Zona's Zone

It's No Big Deal (??? !!!)

2011-06-16T00:57:00.000-07:00

So it was one of those moments that make you go "AAARGH!". I know we've all had them. I was on the phone with a friend who has FM. I assumed she understood about these dumb diseases though her FM is mild compared to many people's. So what does she say to me ?? "well, cfs does go away". WHAT??! Did she really say that? hmmm Yes, that is indeed what she informed me. I said, "since when? Funny I've had it 31 yrs now."

So she proceeds to tell me that she's known two people who had CFS and both 'got over it'.

I quickly informed her that either a. they never really had CFS or b. she must have known two very rare souls who had miracles because that certainly is NOT the usual course for things with CFS. !!! Certainly not for all of you and more that have suffered with this dd for years and years.

Did I tell you this friend always knows everything about everything?

It's been one of those weeks...

New MCS & CFS T-shirts and Buttons!

2011-05-05T01:01:00.002-07:00

Take a look at the new shirts and buttons up in Zona's Zone Cafepress Shops! Go to Zona's MCS Shop and to Zona's MCS2 Shop.

I will be adding more shortly so do check back!

Also if you have something you'd like to see put on a t-shirt or button (bags, labels etc too) you can send me your idea or leave it in a comment here!

Don't forget May is CFS

Left Foot, Right Foot, Feet, Feet, Feet...

2011-05-04T23:35:00.002-07:00

Went to the store today and Dh parked the car at the other end of the parking lot,about 100 feet away. Me, thinking in some ways (though not others) I'm not as bad as I once was could walk those feet and it would be good for me to do. Not!

The first twenty feet or so INTO the store wasn't so bad. Then there was the standing in line. Not so good for someone with MCS! And then high tailing it out the door to the wide outdoor air
and then to the car.

Ten feet later I'm telling myself "left foot, right foot", "keep going you can do it!". Huff. Puff. Legs becoming lead. "Left foot, right foot". But self retorted, "Hey! Wait a minute there! I don't even know where my feet are at this point! How do you expect me to keep moving them?!" Huff, Puff, pant , pant.

Half way across that parking lot and still no car in sight. At this point I knew just how bad I really am. Funny how we can fake ourselves into believing other wise until challenged.

And yet it ISN"T out of shape muscles that's the problem. It's endurance. It's energy. It's lack of air power too. And nerve power. How does one explain nerve power?

Zona

Long Hybernation but Now It's Spring!

2011-04-03T16:00:00.002-07:00

Yes it has been a long hybernation season this year and my finger is still bothering me enough when I type to not want to do too much of it. But here I am, at last!

I've not been just laying around though. No, I've been busy working away on a new project which I hope to post link to here soon. I'm making miniature buildings to be used for different things, model train sets, match box cars, big boy games like war gaming, Little House on the Prairie types for the girls...well whatever suits your fancy. I've been throughly enjoying getting back in the architectural design/drawing phase of my life even though they won't be full sized buildings and I have always loved miniatures too! So this seems to be a good match for me :)

Actually I am recreating buildings of my youth, old homesteads and other places of interest I've seen and it's quite nice, all that nostalgia! Soon I hope to make a scale set up of a mini farm I lived on during a large portion of my youth, a place where we had horses and chickens and collies. Ah! Those were the days!

Do you have a place from your youth that would please you heart to look at in miniature? Grandma's house ? ..."over the river and through the woods.."

Cool Christmas Gift !

2010-12-27T21:48:00.002-08:00

Check out my cousin's Christmas gift she got. This is really cool!

Jewelry by Lynette

zona

Christmas Cards To Print !

2010-11-30T00:02:00.001-08:00

The christmas cards are up again for anyone who wants to d/l and print them off to use

http://members.shaw.ca/zonas_ink/xmas/christ1.html

Broken/cut off finger has kept me from adding new ones unfortunately

zona

Asparagus -- Who knew ? (fwd'd msg)

2010-07-26T01:09:00.002-07:00

[I remember reading many years ago that asparagus contained some things that only a few other foods do, things that are good to prevent cancer. I'm forwarding this intesting article today to bring it to your attention - Zona]

Asparagus -- Who knew ?

This is from a friend

My Mom had been taking the full-stalk canned style
asparagus that she pureed and she took 4 tablespoons in
the morning and 4 tablespoons later in the day. She did
this for over a month. She is on chemo pills for Stage 3
lung cancer in the pleural area and her cancer cell
count went from 386 down to 125 as of this past week.
Her oncologist said she does not need to see him for 3
months.

THE ARTICLE:
Several years ago, I had a man seeking asparagus for a
friend who had cancer. He gave me a photocopied copy
of an article, entitled, Asparagus for cancer 'printed in
Cancer News Journal, December 1979. I will share it
here, just as it was shared with me: I am a
biochemist, and have specialized in the relation of diet
to health or over 50 years. Several years ago, I learned
of the discovery of Richard R. Vensal, D.D.S. that
asparagus might cure cancer. Since then, I have worked
with him on his project We have accumulated a number
of favorable case histories. Here are a few examples:

Case No. 1, A man with an almost hopeless case
of Hodgkin's disease (cancer of the lymph glands) who
was completely incapacitated. Within 1 year of starting
the asparagus therapy, his doctors were unable to
detect any signs of cancer, and he was back on a
schedule of strenuous exercise.
Case No. 2, a successful businessman 68 years old
who suffered from cancer of the bladder for 16 years.
After years of medical treatments, including radiation
without improvement, he went on asparagus. Within 3
months, examinations revealed that his bladder tumor
had disappeared and that his kidneys were normal.

Case No. 3, a man who had lung cancer. On March 5th 1971, he
was put on the operating table where they found
lung cancer so widely spread that it was inoperable.
The surgeon sewed him up and declared his case
hopeless. On April 5th he heard about the Asparagus
therapy and immediately started taking it By August,
x-ray pictures revealed that all signs of the cancer had
disappeared..
He is back at his regular business routine.

Case No. 4, a woman who was troubled for a number of
years with skin cancer. She finally developed different
skin cancers which were diagnosed by the acting
specialist as advanced. Within 3 months after starting
on asparagus, her skin specialist said that her skin
looked fine and no more skin lesions. This woman
reported that the asparagus therapy also cured her
kidney disease, which started in 1949. She had over 10
operations for kidney stones, and was receiving
government disability payments for an inoperable,
terminal, kidney condition. She attributes the cure of
this kidney trouble entirely to the asparagus.

I was not surprised at this result, as `The elements of
materia medica', edited in1854 by a Professor at the
University of Pennsylvania , stated that asparagus was
used as a popular remedy for kidney stones. He even
referred to experiments, in 1739, on the power of
asparagus in dissolving stones. Note the dates!
We would have other case histories but the medical
establishment has interfered with our obtaining some
of the records. I am therefore appealing to readers to
spread this good news and help us to gather a large
number of case histories that will overwhelm the
medical skeptics about this unbelievably simple and
natural remedy.

For the treatment, asparagus should be cooked
before using, and therefore canned asparagus is just
as good as fresh. I have corresponded with the two
leading canners of asparagus, Giant and Stokely, and I
am satisfied that these brands contain no pesticides or
preservatives.
Place the cooked asparagus in a blender and liquefy to
make a puree, and store in the refrigerator. Give the
patient 4 full tablespoons twice daily, morning and
evening. Patients usually show some improvement in
2-4 weeks. It can be diluted with water and used as a
cold or hot drink. This suggested dosage is based on
present experience, but certainly larger amounts can do
no harm and may be needed in some cases. As a
biochemist I am convinced of the old saying that `what
cures can prevent.' Based on this theory, my wife and I
have been using asparagus puree as a beverage with
our meals. We take 2 tablespoons diluted in water to
suit our taste with breakfast and with dinner. I take
mine hot and my wife prefers hers cold. For years we
have made it a practice to have blood surveys taken as
part of our regular checkups. The last blood survey,
taken by a medical doctor who specializes in the
nutritional approach to health, showed substantial
improvements in all categories over the last one, and
we can attribute these improvements to nothing but
the asparagus drink.
As a biochemist, I have made an extensive study of all
aspects of cancer, and all of the proposed cures. As a
result, I am convinced that asparagus fits in better
with the latest theories about cancer.

Asparagus contains a good supply of protein called
histones, which are believed to be active in controlling
cell growth.. For that reason, I believe asparagus can
be said to contain a substance that I call cell growth
normalizer. That accounts for its action on cancer and
in acting as a general body tonic. In any event,
regardless of theory, asparagus used as we suggest, is
a harmless substance. The FDA cannot prevent you
from using it and it may do you much good. It has
been reported by the US National Cancer Institute, that
asparagus is the highest tested food containing
glutathione, which is considered one of the body's
most potent anticarcinogens and antioxidants.

Please send this article to everyone in your Address Book.
The most unselfish act one can ever do is paying forward
all the kindness one has received, even to the most
undeserved person.

Stink Balls !

2010-07-21T01:36:00.003-07:00

Yesterday I kept smelling mothballs and wondered where the smell was coming from. Turns out the new neighbor has placed them all over his yard, hundreds of them! YUCK! No wonder my legs have been tingling, heart skipping, feeling whoozy and feeling that 'chemical sore throat' (a type of sore throat I get when exposed to things like frags and chemicals) has been bothering me for days! Haven't been able to sleep either.

My husband has been vomiting and feeling very bad in other ways too. Another symptom of benzene /napthalene toxicity! YUCK.

Seems he placed these all over his yard to keep the cats out. Seems to me there are safer things one can use to do that! These stink balls aren't safe for humans either and I thought most people were savvy to that fact. Besides, who ever would want their place to smell like mothballs?! You can smell it a block away and I'm not kidding. I also live right next store to the smelly place. YUCK.

I tried to tactfully talk to him about this and let him know how we were all sick from it. You think he cared? Ha. He was more concerned about how I was bothering him by talking on the phone on my back porch. Seems he has supersonic hearing...

YUCK and ARGH

Moth balls are environmentally unsafe!
Benzene can irritate the eyes and nose and cause severe headaches, nausea, vomiting and diarrhea. Prolonged or repeated exposure can cause liver and kidney disease. Store mothballs in a tightly sealed container well out of reach of children and pets. The fumes from mothballs can cause respiratory problems, and the U.S. Department of Health and Human Services identifies benzene as a carcinogen

Sprung Like A Warped Spring (aka Spring has sprung?)

2010-05-11T23:31:00.003-07:00

I've been not doing very well since about christmas when I got that virus. A lot more pain in a lot more places all the time it seems...and a bunch of other symptoms driving me up the wall including that (argh) overwhelming fatigue along with some other frustrating stuff I can't figure out ... Stomach/gut problems much worse etc (whine whine). Some of it might be from pollens...some years i am bad all spring so that's a possibility.

I guess I've been a bit more overwhelmed by it all than I realized. Stress of any kind can sure take it's toll huh?

So.... yesterday the plumber was here downstairs. I had told him last week that I had MCS when he said he was going to put stinking stuff down the drains. Ended up he didn't need to do that... er...or was that part of the fumes last week?? So the other day dear husband and I are laying in bed while he's downstairs when dear husband thought he smelled electric burning! Boy talk about dashing around the house trying to find what was hot! Turned out it was the plumber downstairs--- burning plastic!! When I opened the door down there I was greeted with a cloud of very stinky smoke. Of course it had come up thru the vents and the whole house reeked. We couldn't leave the house til he was gone...and where i usually sit outside on the deck was right above the bathroom window downstairs so it reeked there too. argh.

Well... my brain immediately went south for vacation along with dizziness. And dh's old terrible coughing fits kicked in. Soon as that plumber was gone we got out of here! yikes! Since then everything's been kicked up, including pain, spasms, stomach etc. ugh. Who knows if that is why but i suppose so. My brother, the contractor, said that plastic is ABS = baaad stuff. yuck!

Finances continue to be a major problem. Sadly that is too common for most of us who are disabled with these horrid illnesses.

I Have A Brainful

2010-03-12T00:03:00.004-08:00

I have a brain full of thoughts today. Lots of various things. It's so full perhaps it's falling out my ears?

I've been thinking about thinking. Now isn't that a strange thing to be thinking about? Basically I've been thinking about what we think about, those of us who are ill. Actually even the sorts of things those who aren't ill think about too. Probably the word which would describe most of those thoughts is "fussing". Yup, I fuss about things. Bet you do too.

Part of the reason I've been thinking about thinking is from a scripture in the Bible in Phillipians. It's instruction on what things to think about. Imagine that! "think on these things: ---". Funny how all these years later we're now talking so much about neuroplasticity and how the brain can rewire itself, and how many of these new "treatments" some PWC's are finding some help from have to do with getting in a stress loop and techniques to break that loop. What are we thinking about? When the stress handler/interpretor of the brain gets stuck in "tilt mode" doesn't take much to trigger yet more stress.

I'm sure I'll be blogging more along this line in the future. Neuroplasticity is a fascinating subject and I am most curious about these various treatments people are trying that sometimes bring some improvement to their lives. At the moment that's what I'm aiming for, improvement. I don't expect 'cure', at least not from the medical profession.

Before I sign off here I'd like to share an old friend's blog with you. I confess I'm a bit jealous! I just love her stuff. She's so creative! Take a look for yourself -Dianne's Blog

[PS Yes, I did mean to write this a bit circular to entertain you and it illustrates how my brain works most days! LOL]

Real Free Market Health Insurance?

2010-03-01T00:27:00.002-08:00

Wouldn't it be grand to be able to pick up a phone book and find as many health insurers to choose from as we can auto insurance companies? Ones that actually offer a plan to fit your needs and desires, like coverage for accupuncture and chiropractic or other alternative med? Or lower monthly cost, paying for regular GP office visits out of pocket (or billed by Dr like the old days)? Sort of a smorg of items to choose from except for major med.

For instance, you must have car insurance (laws), sure. But you have a choice of companies to pick from how do compete because you can pick and choose companies, what features you want, how much deductible etc. Truely free market health insurance would offer the same.

Most of us couldn't afford a catastrophic health event out of pocket so wanting everyone to carry some kind of major med/catastrophic illness policy would seem to be a good thing. At least it would be a good thing for the tax payer who ends up picking up the bill. But beyond that it seems to me if there weren't so many 'requireds', like one I read recently where a company of male workers were required to carry coverage for disease of the female organs,-required by law- insurance might not be so much. Of course then if the health insurance companies actually had to compete against each other for your business, across state lines even then----

Off the top of my head the only other thing I can think of that would need to be addressed is getting dropped once one has a 'pre-existing' condition. I realize that things like being able to sell across state lines and form different types of pools is partly the same as this. However, a real free market system would go beyond those two and make for some real competition.

Certainly there is some way of having a free market and still address this problem and not resorting to a compete revamping of our health care system right down to stealing our personal choice and liberty?

Viva Liberty!

Valentine's To Print!

2010-02-09T21:44:00.003-08:00

I didn't get done what I had hoped to but here are two cards and a sheet of Valentines you can download and print! :)

Zona's Ink Valentine Cards

Enjoy!

Zona

I Should Name That Thing

2010-02-09T00:23:00.003-08:00

Either time must fly lately or I'm getting lazier? Seemed like I just blogged here but I see it's been a while. Hmmmm...

I had a doozy of a reaction for the first time in quite a while tonight. Took my daughter to work and had to grab some catfood. Did I tell you I don't do much shopping? I can't walk far and can't tolerate all the chems and fumes etc. But for the last couple of years at least I've been able to do a quickie dash style shopping, which is a huge difference from the days when I couldn't do absolutely any. Now I'm wondering if the old days are coming back!

There I was minding my own business when I ran smack into a cloud of the smelliest junk I'd smelled in a while. I mean you could have cleared the entire store with that cloud. I just can not fathom why anyone would/could douse themselves so much and still breath! My head went into a tailspin (or is that a headspin??) and went out to lunch leaving me there alone to figure out how to find the front door and get out of there fast. As the seconds past I could feel that invisible hand grasping my throat and squeezing hard. THAT is the one symptom that hadn't visited me in a while and one I was soooo glad to have gone--- until tonight. I prayed I wouldn't need the cortisone shot to stop it this time...

Well, I tried to keep calm - fretting only adds adreniline rush and makes it worse - and sip lots of warm, soothing to the throat stuff. I had done this by instinct in the past and found it helped some. Then some years later I actually tripped across the suggestion in an article which pointed out that doing so washed the chems off your throat and the warm helps relax the throat muscles. Ok, I buy that. Thankfully
the swelling didn't progress.

Tonight I'm still feeling 'off' a bit. And some unkind thing is jabbing me hard in the side between my ribs and won't stop doing it. Ok, it's not a thing or a someone. It's a symptom. Ugh. Just in time for bedtime...

(I'm soooo curious about that Gupta treatment. Quite a few people are trying it these days... If only I was a bit richer I'd buy those cd's...)

Suffering Succatash!

2010-01-15T00:56:00.003-08:00

I disappeared, but here I appeared again. Well... momentarily.

Dear Husband, otherwise known as "dh" and I caught some virus thingie and have been down since Christmas. The bird, turkey that is, is still in the freezer. We weren't well enough by New Years Day to fix it then either. We've both been sweating buckets! Seems this bug really likes to dehydrate you like crazy. We're making the bottled water company rich I think. I'm better a bit that way but Dh isn't. This thing seems to hang on forever! Ugh.

I was so full of good intentions. Was making stuff for my grandkids and printed off a few of my own Christmas cards. Both are still sitting here. And I was going to post some kind of New Year's Resolutions but that I didn't do either. Just as well, I don't usually make those and hey, would I do them anyway? Well, if I were to make them I'm make just this one--- I resolve to do something to my living room this year to make it more habitable, more comfortable, less of an eyesore and add some color to entertain my eyes. Beige has gotten too boring. (beige was NOT my choice. It is what was here when I came...)

So that's it for now. I think of tons a things to post here but looks like I don't actually write them. Would I bore you anyway???....

Hmmmm....

Zona

Whacked and Got Unkinky

2009-11-28T00:49:00.002-08:00

Hope everyone had a nice Thanksgiving (you Americans :) )

Well, I made my second trip to chiropractor. I hadn't gone for years because I couldn't afford it. (still can't really but have partial coverage for a few visits a year). I knew I was whacked out. In the past I went often and tho it didn't cure me it did seem to keep some things from getting worse, helped headaches etc and helped keep me more on a plateau, ie not getting worse all the time.

This Dr is trained to do A.R.T. which I found helpful for the shoulder I had frozen shoulder in for a year. He helped that the first time. This time I complained about pain under outer edge of collarbone near shoulder (a FM location??) and on the side of my body between ribs I'd been having for a week! (argh!). He adjusted the very top of my back in ways I'd never had done before and I felt a rib move a lot! As I had this problem years ago and my myopractor had explained to me that area can cause skipping heart and/or rapid heart beat I asked him about that. He informed me that anywhere from T2 to T7 affects the parasympathetic nervous system that includes heart rhythm. Later I remembered that is what my brother's chiropractor said about his reflux too, and it totally disappeared when his rib was put back into place. I need that too as reflux has been bothering me bad lately!

You know how it is when you have horrid pain and are soooo happy when it settles down but don't realize the lower level of pain that is ongoing until that goes away? That's how I was. Couldn't ignore the severe pain I get but really didn't realize how much pain I was experiencing constantly (in my upper back) until it was gone! wow! I was soooo relieved with the relief I felt in my back! Unfortunately all afternoon today it felt like it wanted to pull back out of place again... still much better than it had been but I wouldn't be surprised at all to need repeated treatments to get the muscles etc to behave and get used to being where they should be. It's been whacked out for a very long time I think.

It's just too darn bad (and very upsetting) that medical doesn't cover it all and that I can't afford to go as often as I need to :( (this is one of my big objections to universal health care btw. The very things that help me the most are not and would not be covered! ie alternative treatments. AMA practices do nothing for me.)

Anyone else try chiropractic and other natural type treatments?

Hope you are all recovering from Thanksgiving dinner :)

And Just As It Was Getting Average

2009-11-17T22:10:00.002-08:00

Every now and the my symptoms seem to roll into a lull. Though they may vary still, from hour to hour, day to day there gettings to be a sameness about it, an 'average'. I can only hope it stays that way for a while as it is easier to cope with. But then it happens. I get knocked off my average.

About two months ago I got some kind of respiratory virus. I spent weeks sneezing and coughing, headaches, aching, blah. In a wierd kind of way it actually felt 'good'. Yes, I know. That sounds nuts! But I assure your it's really not...because 'normal sick' feels better than this crud. At least with normal sick there's a blah tiredness that matches. With this crud the horrid fatigue is often accompanied by an underlying restlessness, sometimes jitteriness that's hard to describe.

The virus seemed to finally abate, yet not for I have had continual coughing and sinus stuff every since. Yuck. Now I have been attributing this to seasonal allergies, either from mold or the fact that the furnace is now running. However I have been hearing the same thing from several friends, none of whom live anywhere near me and have different weather conditions. Hmmmmm....

Anyway, like I said this has been happening for weeks now, so it's begun to feel 'average'. Not fun mind you, but average.

Until yesterday. Yesterday through me into a tailspin. A change. Not a pleasant change either---and the coughing etc. is still there too. My average world has been turned up on end by terrible back, neck, shoulder and ribcage/chest pain, not quite the same kind I usually get (and I have the usual type much of the time too). That and tingling and numbing. Now tingling is not at all a newcomer to me either but this has been. First it was my hands. Then my foot. That is very unusual for those aren't typical locations of tingling for me much less numbness! Makes you wonder "what's up with this?!".

And if that wasn't enough, along with the difficulty sleeping though it all, today I woke up feeling like I had crashed and burned. Zero strength. I felt like either I was coming down with something awful, which I was hoping for reasons stated above, but I didn't believe, else here comes the extreme of CFS exhaustion again- "the I-Hardly-Have-Enough-Energy-To-Breath" like of fatigue. Ugh.

Does NOT make resting easy let alone trying to sleep.

Waaaaa!

I'm Alive But Sneezing

2009-10-21T18:42:00.003-07:00

I realized how long it has been since I posted and I have so much to tell---but just not up to writing it all out at the moment. I've had some 'bug'. Nope, not the Hini flu I don't think but miserable enough. Meanwhile I have a new grandbaby who has been in NICU and other stressful things keeping me busy (ie a husband whose had migraines for a week!).

Soon I hope to post here about the flu vaccines, the discovery of XMRV retro virus in patients with CFS and other things...

So please do check back. Meanwhile my plans are just to sack out until I'm feeling some better!

Zona

The Chore That Just Won't Get Done

2009-09-16T00:12:00.002-07:00

For four years now I have started the same chore over and over and never gotten it done. It's one of those domino chores. You know the type? In order to do what you want done you have to do something else first. But before you can do that one there's yet something else that has to be done before it! And so on.

Tucked back in the corner of my room was a broken video dresser. I've been hoping to remove it all these years. The problem is there's a pile of stuff in front of it that has no home, ie no closet to get put in. In front of the pile sits a wooden tv tray that holds my laptop when I'm not using it. Thankfully it folds and is easy to move.

Then there's a small cabinet that I planned to use as a make shift night stand until I can get a better one. That, however, is also full of stuff, husband's junk, that needs to be placed somewhere else... but where? We're so lacking closets and storage space that the whole house has become storage for things that we need but not every day. Argh!

So I began this job one after noon. Move the pile from the floor to the bed after moving the tv tray and laptop. I vaccuumed the now empty space. At this point I'm wiped out. I need to lay down before I fall down! But alas, the bed is piled high and there's no Zona sized space left on it. Argh!

This is the point that I have reached at least four times before and ended up just moving that, now 'bed pile' back to beging a 'floor pile'. Argh!

This time I figured I'd rest for about a half hour and at least gather all the stuff out of the video cabinet and put it in boxes that I could put in the hallway or some where until later. Well--- a half hour later I'm still wiped out. Totaled. But I'm determined!

I went and brought the boxes in the room and ever so carefully placed my imporant junk in it. (hey! This junk was paperwork and stuff I have to get my hands on quickly when I need it!) By this point I'm reeling from fatigue---

Dear husband wasn't in much better space but I begged him to move that old video cabinet out of it's corner spot. Did I mention there's only a 12 inch space to manuever around? Finally! A bare spot in the corner--- but---

At this point I realize I have a problem. I don't want to put these boxes of important junk out in the hallway. Where to put them? Ok, ya, they went back in the spot where that old video cabinet had sat. By now I'm breathless and dizzy. I was about to collapse on the bed for a few when it dawned on me that I had another more serious problem!

You see my wireless router had been sitting on top of that old cabinet and now it had no resting place. The cables were too short to move far in either direction and it sure couldn't just hang there. And there was no place to put my lamp. ARGH!

Sometimes we can get a bit ingenious dispite mal-functioning brain cells? Or perhaps It's more from being in a desparate situation and just plum to tired to think too far.

I grabbed another empty box, placed it on top of the boxes of precious stuff and made it into a temporary table. Voila!

---problem is--- now I have to move all three things in order to rifle through those boxes to find the papers I need...

...and I still need to move it all again when I finally do find a night stand.

Oh well. At least that video cabinet got move.

Now I wish my body would.

Did I mention that was three days ago and I'm still unable to do much more than breath?

[*people with chronic fatigue syndrome should NEVER use up more than 80% of their energy. But then how the heck do you judge that? Or ever get something finished in less than four years?!]

Zona

Give It Some Thought

2009-08-24T02:19:00.003-07:00

There's a lot of controversy about the proposed health care bill, often called "Obamacare". I know that many in the disabled community are impressed by the words "universal health care" assuming they will have more care and many have been burnt by insurance companies. However something that could have huge impact on our lives (as well as our family's, children's and neighbors) and debt, something that will not only change health care but the basis of how we divide what is private personal business and government's control of our lives really deserves careful thought and pondering, much much more thought and discussion than this has been given so far.

Not only should those representing us have to read AND understand what it is they are voting on, but we the people ought also be know more than a few things before it is decided. Don't you want to know how you can expect to be treated for these illnesses you have that haven't even been given decent attention, research or acknowledgement? What if they deem them not serious enough to have multiple doctor visits about? What if tests you need are deemed unnecessary and a waste of resources?
What if they continue to preach that CFS, for instance, is a stress illness and decide it should only be treated with anti-depressants?

Yes the health care system needs some tweaking for sure. And yes, insurance just doesn't work for those who are unable to work. We do know of many things that need to be addressed. We need discussion. We need to be able to give our input, to share what our needs and problems are. Before anyone votes for a massive switch in how we do things that will not be easy to change again there is much to know and think about first!

I will post things I come across them and more of my thoughts as time goes on.

As for me, at this point I vote for some kind of healthcare plan that will cover alternative Doctors and treatments as that is what works best for me :)

Dirty secret No. 3 in Obamacare

2009-08-24T02:18:00.001-07:00

An interesting read on the health care bill...

Dirty secret No. 3 in Obamacare

Shared via AddThis

You should see this!

2009-08-10T01:57:00.002-07:00

A must see video on healthcare on youtube from CSPAN on what the plan will do.

Where There's Smoke...

2009-07-21T22:06:00.003-07:00

For the last several days we've been sitting in smoke. There are four fires nearby and the valley is full of yucky air. About 17,000 people were evacuated, and from what I've heard, four homes have burnt down. The first day the winds were crazy which made the fire terrible to fight. At one point they had it contained, but then days later it was only 40 % contained. I'm not sure how contained it is now but I heard they allowed about 6000 people to return to their homes.

This is not as bad as the BIG fire of 2003. But for those of us with Multiple Chemical Sensitivity and other chronic illnesses any smoke is bad! Whenever there is a fire any place the valley fills up with smoke as it gets bottle-necked in here. That's true even for some fires down in Washington.

Since the big fire in 2003 they have changed the way they measure the air quality. So it's real hard to know just how bad it is.It doesn't seem like it's as thick as it was then.. that fire was much bigger. But it seems like it must have burnt into some new kind of trees etc yesterday because it started bothering me much more and the smoke smelled a bit different.

For the last few days we've been confined to the bedroom, the only room with an air purifier and window air conditioner. (It's been in the 90s and the house is hot) Surprisingly Dh hasn't had the awful coughing fits. But he can't leave the room without having his lungs hurt and feeling miserable. Neither can I, though I've ventured out long enough to throw in the dishes and get supper.

Exposures like this can cause all kinds of symptoms for those of us with MCS: headaches, dizziness, fatigue, fuzzy-brained, brain spin, achiness!, breathing difficulties, focusing problems, blurred vision, sore throat --- and more, all of which we've had.

Last night I was awake more than asleep. I couldn't breath and it was too warm. Tonight the AQ number is higher alreadythan it was late last night. Late nights seem to always be worse than during the evenings. Soooo... looks like we might bein for a trying night again. Daughter has to be at work at 10 am and I am hoping that hubby-pooh will be up to driving her because I know I won't be able to!

I Could Have Had A Nice Little Rest...

2009-07-14T02:23:00.003-07:00

Off and on since last week I've had a sore throat, keep loosing voice, and feeling really cruddy otherwise. I've been miserable and not up to doing a dern thing .

A few days before my friendly worker at Timmy's had told me I looked horrible and asked me what was the matter and I unloaded my tale of sore throat woe. This was one time when my feeble condition was visible apparently, something I have sometimes wished was the case on other occasions when I've felt dead on my feet and some kind soul gives me one of those "but you look fine!" comments.

So yesterday when I was out running around, or rather dragging around on a couple of errands I stopped in to grab a cup of coffee. Ms Timmy's worker ducked back and about gave me the exorcist's sign of the cross with her fingers begging me to stay back from her. Then she informed me to three gals there were off due to some spreading bug with the same symptoms I'd been having.

So--- what I've had is something going around? ! So it's not just the usual junk it seems (didn't feel quite like it was).

As typical in these situations I say ..."If only I had known! I would have just been excused to sprawl out here on my bed guilt free of the dishes in the sink and thefloors that needed vacuuming!"

Seems we are always pushing ourselves along ... somedays right off the old cliff!

Zona

Sofa Surfing With Sally June

2009-06-29T20:36:00.006-07:00

Click toon to see a bigger version :)

Told you it was coming soon! The new CFS toon series, "Sofa Surfing with Sally June". A continuing comic strip of the life and times of a 30 year CFS veteren. Hope you enjoy it as much as I hope to. (PS not all will be quite as political in nature... ) - Zona

Modern Inventions?

2009-06-29T15:49:00.002-07:00

Although I love my laptop and couldn't live with out it - I'd loose all my great friends and contact with family and being in touch with the world outside - sometimes I find that it takes as long to do something on it then it does to do it the old fashioned way. This includes drawing comics.

Would someone get me one of those new big wacom boards that you draw directly on and see it under the pen? Pleeeeease !

I'm getting a kink in my neck ...

Zona

Life Outside The Box- New "toon' by Zona

2009-06-24T02:05:00.005-07:00

(Click on comic to pop-up a bigger version, or go to Zona's Zone site. Link to your right... or click here)

Stay tuned for new comic strips and inspiring stories of the life of a slightly eccentric PWC (Pmcs too!).

My Theory - The Quickie Version

2009-05-31T23:12:00.002-07:00

Lest it disappear when I hit submit again I'm going to post a very condensed, "quickie" version of my theory of the cause of CFS.

I came to this belief back in the '80s after a bit of observation. Now I will remind you that my first dx was "pesticide poisoning" due to tests and symptoms. I shortly realized that PS causes EI (environmental illness, as we called it back then) , MCS. However it was a couple years before I met one other person who had MCS. She introduced me to friend #2 with MCS. Those two were the only ones I knew until 1995 when I got on the internet. As for CFS, though I had it from the earliest part of my illness I had no clue about that until I was dx'd in 1989, the same year my son who was 15 at the time got CFS too. Back then the Dr. called it "CEBV", Chronic Epstien Barr Virus. Other than my son, who didn't get his dx until four years later, I knew no other soul with it until I got the internet in '95.

However I did begin hearing about GWS shortly before I acquired the net. My sister worked on the registry at the VA for GWS and reported to me that the guys returning had the same symptoms I did! That only confirmed my suspicions.

So here is my theory :

Long term or traumatic stress causes various biological changes in your body PLUS
2) a virus or vaccination (I had a rheubella shot...my son had a weird virus)
AND
3) an exposure to a toxin (toxic chemical)
that all happens within a short timeframe.

Now, In 2009, almost thirty years after I came to form my theory I see that Dr Gupta has come out with one of his own that is similar. The main difference is that I see a combination of the three things conversion during a short period of time, while his theory only combines two. I still believe I'm right.

Looking at the GW vets-- they had multiple vaccinations AND exposure to such things as Sarin (similar to the pesticide I was exposed to btw) WHILE in war time and separated from family, friends and their usual jobs, ie stressed. Though often people aren't aware of toxins they are exposed to they are present in most people's lives.

Next post I'll share with you the rest of the post that disappeared, my theory of accidently brain connections/ memory ties and some symptoms, possibly even the reason for some sensitivies!

Zona

Another Night ...

2009-05-25T02:57:00.003-07:00

Here we go. Another one of those nights, you know the ones? Stupid wierd symptoms want to show up just when it's time to hit the hay and keep you awake? UGH ! I'm a bit nauseous- ok that's not terribly unusual but it is starting up at this time of night. The slight tingling-numbness (not quite numb) around the mouth isn't usual for me either. But the sudden hip-thigh ... hmmm not quite sure how to describe this... not quite lame but sort of - uncoordination for sure which showed up first and was immediately followed by the rest, including the severe bunching up of the muscles in my shoulder is.

(and coming here I remembered that last post I wrote went into the great oblivion when i hit publish and I guess I never remembered to come back and rewrite the thing again. The site went down just as I had submitted it the last time. And the post was sooo good too! Honest!)

Looks like it might not be a very good night here.

(but at least maybe this will publish this time?)

Zona

Would You (Not) Be My Neighbor?

2009-05-15T21:19:00.002-07:00

Once upon a time in Mr. Roger's neighborhood there was a sense of community in the neighborhood. People knew each other and acknowledged one another from front porch across to front porch where they sat sipping lemonade. Ah, what a nice place to live, huh?

I don't live in such a neighborhood. Today we rarely know our neighbor's names, let alone their stories. However, I do know the names of a few of my neighbors. A few of them have been good to my daughter. As I can't get out much she knows them better than I do.

Today I was greeted by one neighbor. Ok, I'm being polite. It wasn't exactly a greeting. It was more of a scolding zone. It seems the neighbor is a bit displeased with the current state of our front lawn. He was in no way interested in the fact that we had to borrow a lawnmower, and that our car has been out of commission so we couldn't pick it up yet. Nor fact that we are both disabled, which I thought he already knew, much less that we've both recently been laid low by some virus. He also seemed to be under the impression that two folks who are unable to work should still be rich enough to dash out and hire help if they are unable to push a lawnmower. Oh, and most significantly, Mr. Neighbor said, "Everyone's got their story." Sigh. Obviously Mr. Perfect never had one of this own.

You know I'll bettcha that out there in Lake Wobegon and Mr. Roger's neighborhood if a neighbor saw danderlions springing forth in your a-smidgeon-too-deep grass some kind, compassionate neighbor would have come over and chatted about making "dandylion wine" and another one's son would have showed up with a lawnmower and made that yard look like a park. Yup, they probably would have had the Lady's Fellowship cook up a nice basket of their best recipes and sent them over with the lawnmowing son.

As I said, unfortunately I don't live in that neighborhood. The only thing neighbors seem to want to help with these days is helping to pile the stress load higher.

---off for long weekend. (It's going to be a very loooong weekend in this neighborhood)

Zona

ARGH

2009-05-14T00:49:00.003-07:00

I wrote a nice long post here last night explaining a theory I had years ago about what causes these dumb diseases. It was good. Yup, it was actually great! I was telling you all about my theory and why I believe it and what I had come across during these almost 30 yrs of illness. I was also telling you about things I have read about resently and how they might relate. I was a very nice if rather long post.

My brain function was off enough that I kept having this arghy old typical laptop typing problem. You know the one where the cursor jumps to another location as you're typing because your hands are dangling over the touch pad ? That requires back spacing and figuring out what it is you were saying and typing it all over again. That happened several times.

So where is it? you ask. Well... You see... I had it all done and went to hit submit only to find it went "POOF!" Gone. Done for. Vanished! Vanished into the dark oblivion of cyberspace somewhere lost between my computer and the blog server that just happened to go down at that very moment for maintenence, or so the message said. But I wondered if the net grimlins weren't at it again.

Sigh.

Well, I guess you'll just have to come back later when I have recollected my thoughts, and my mind, enough to rewrite the thing once again and get it posted.

Meanwhile--- have a nice day.

Zona

Time To Revolt! It's A Veggie Revolt

2009-04-11T19:47:00.004-07:00

Been wondering what I've been doing? In between hearing the evening news and dealing with the flu and of course usual CFS, FM, MCS stuff... I'm giving you a sneak peak--- :)

These cute Steamed Veggies and their friends occupy a three piece print set for framing you can order to go on your kitchen wall. Go to my site, Zona's Zone shop section to look at them and while you're there take a look around the rest of the site! I have some free to download and print greeting cards, bookmarks, doorknob hangers etc.

Gotta run. Got more fruity things to do!

Zona

Dear Readers/Commenters--- Zona Is Sooooo Sloooow !

2009-04-04T00:48:00.002-07:00

Just wanted to apologize for taking so long to approve the comments left here. It seems they were hidden so got overlooked for a looooong time. Now I'm going to have to figure out why they were not seen and hopefully not have this happen again!

Zona

This Touched My Heart

2009-04-04T00:38:00.002-07:00

Pray for this family and this little boy. They touched my heart so much. I became ill about 30 years ago now, when I was pregnant with my fourth child, my son Matthew. He, like this child had hypoplastic left heart syndrome ...and only lived six days. He was only 2 lbs 12 oz. Medicine has come a long ways since then and I pray God grants a miracle for this boy -and his family.

Will you keep them in your prayers too?

Zona

(When you're really bored...) Journalism gone bad?

2009-03-27T23:38:00.004-07:00

My new hobby? Spotting journalism gone bad, ie. news articles on the net with reaaally wierd wording or grammar or, ya, even bad spelling sometimes. Here's a dilly of an example for today taken from breitbart.com.

Quote:

Loubier pointed to the planned acquisition of Arctic patrol vessels, construction of a deep water port and eavesdropping network in the region, annual military exercises and boosting the number Inuit Arctic rangers keeping on eye on goings-on along its northern frontier

It just kind of goes on and on and on.

(This is what we do when we've come down with the flu? Or when we are reaaaally bored??)

zona

One Of Those Dreaded Things

2009-03-14T03:30:00.002-07:00

One of the things most of us with this DD's (dumb diseases) dread most is having to find a new doctor. It is no picnic believe me. It often ends up being this "go back to Go" things where we find ourselves right back at square one after years of poking and proding and pleading and explaining and reexplaining and educating and ... ya, sometimes whining too. As I said it is NOT fun.

In case you don't know there are still many doctors out there who don't even have a clue what these illnesses are, nor that they are 'real'. I've often wondered what a not real illness is. Is it a non-illness? Obviously what they really think is that we're just mental and if only we'd stop complaining and thinking about these imaginary symptoms and go do something we would be just fine. Other doctors do realize they are 'real' but discount them as being rather trivial compared to say, cancer or ... you fill in the blank.

If the first time you walk into the new doctor's office they don't even look you in the eye or pause long enough for you to say something you know you are in trouble. RUN for the door! If they do listen for a minute and get that glazed over look in their eyes, RUN for the door! If they have a prescription pad already drawn out in front like a quick draw outlaw, RUN for the door! If you are really lucky you might just get one of those old-fashioned type doctors who not only actually listen to you but use their own eyes, ears, nose and touch to observe and assess your curious state. Once upon a time I was lucky enough to have one of those doctors, but alas it was pre-illness and he was past retirement at that time already.

One of my sons also has CFS/FM. Because he moved too far away from his beloved doctor, and he indeed have a terrific one, the envy of many PWCs, he had to do the dreaded thing today. I really felt for him.

The name was drawn like a bingo draw out of the list of doctors who were on his insurance plan. It's typically not much more than that is it?

Eeny Meeny Minie Mo
to which Doctor's name do I go?

---and which one is concievably close enough to crawl to if I need to see him when I'm really bad off? Can't be across town.

The first clue that this doctor was probably not the right one was that she didn't see him. Her partner did. I didn't hear the inbetween parts but definitely got the impression from him that the inbetween bits were rather rapid and didn't amount to anything. The finally and most impressionable clue was that he went home carrying a prescription. I'll bet that doctor had his pad quick drawn when he first walked into the room. Once at home he got online and looked up the drug.

Yup. This doctor's a dud. The prescription was for an antidepressant. Now I know some doctor's still think this is the proper course of action for these DD's because they read about it maybe, fifeteen? years ago. In my honest opinion he must have been a dasterdly dud too, because hearing dear son say he looked it up I knew the doctor hadn't told him what the drug was. I'd even go further and say he was a triple dud, a full blown milk-chocolate duds dud (made from artificial chocolate and chemically arranged to decieve the taste to thinking it's real sugar, but not) DUD. I say this because had he bothered to discuss anything with my son he would have learned that previous doctors had tried this routine with him more than once and he reacted badly to those kinds of meds and swore he'd never take one again. Obviously he must not have discussed anything at all----

Time to once again do that dreaded thing and go find a new, new doctor.

I feel for him.

I haven't had my very own doctor I see for CFS/FM/ MCS for years myself.... and I'm not to keen to go looking for one either. (I've yet to hear of one in this town who even acknowledges there are such things as one of these DD's!)

Crashed Toon

2009-03-03T00:01:00.004-08:00

(This toon will be available soon as a greeting card at Zona's Zone ---that is when I'm feeling better... -Zona)

Stimulated Right Off The Deep End !

2009-02-15T01:05:00.008-08:00

Well they did it. Congressmen and Senators (in the good ol' US of A) voted for a 1100 page "stimulus" bill they didn't even bother to read. Can you believe it? And boy am I stimulated! (which isn't such a good thing for those of us with Chronic Fatigue Syndrome who often suffer from being over stimulated by ordinary sensory input.) I want to scream---- so I'm going to scream right here to you and hopefully someone will hear me, though, sadly it's a bit late.

Did you know that hidden in there somewhere between saving the mice and keeping toilet artists funded (of the National Endowment for the arts type--- hey, I'm an artist and yes of course I'm for artists. Real artists. Not toilet painters.) is a section on health. But wait! Don't get too excited for it is NOT good news, especially for those of us with these wierd, misunderstood, under researched chronic conditions that are hell to live with. You see besides setting up electronic medical records it also calls for setting up some kind of Big Brother Health Overlord who will determine when a treatment is not in line with their opinion of good value for the buck spent.

We already have a dickens of a time affording those 'alternative health aids/treatments', like the suppliments that help some, various types of therapies like chiropractics, massage therapy, muscle testing etc. which typically come out of pocket. I know many people with CFS, FM and MCS who are like me and react to most prescription drugs and survive off these alternatives. Some people are lucky enough to have a doctor who prescribes or recommends, at least, using some of these. With the lack of decent research it's no wonder that all these years later they're (the medical doctors) are still wandering in the dark. But then of course we have the wonderful CDC still intent of pushing the "it's all stress" theory.

Now think about that for a minute. For twenty years the government agency has move at rocket speed from denying this is a real illness to acknowledging there are these sets of symptoms, but they are caused by not being able to handle stress. And now the government in their supreme wisdom believes that they are better able to manage the whole health care industry by supervising what doctors are doing for their patients AND determining when what they're doing is too expensive, not correct etc. Much like they run medicare and the post office. ARGH.

Here's a hint of what might happen to our health care. Ruin Your Health With the Obama Stimulus Plan: Betsy McCaughey and Health Care That Kills . While some may say this is just bloviating I think those of us familiar with what has happened, or should I say what hasn't happened in all these years in acknowledging these illnesses, let alone treating them, by our dear governments wouldn't doubt for one moment that it's not going to get any better now!

Makes me think about those $50 "do it yourself suicide" pills they're now handing out in Oregan. It's pretty pathetic that they're so worried about patients getting addicted to pain meds that doctors are intimidated, but seem not at all concerned about prescribing DEATH. Hmmm let's see... addicted or dead... hmmmm. Ya, right. We can't have people running around out of pain. I fear this may become the way of thinking with this new board too, considering after all this was placed in a 'stimulus package' aimed at our economic situation supposably...

Some folks out there who have heard about this are worrying about Grandma and what this may mean for her in the near future. And yup that's ugly. Take a gander at this quote for the article---

Daschle says health-care reform “will not be pain free.” Seniors should be more accepting of the conditions that come with age instead of treating them. That means the elderly will bear the brunt.

Do you think there would be any difference in attitudes towards chronic illness/conditions?

For the life of me I can't believe that any sane "representative" of we the people would vote for a bill they didn't even read. But worse yet, I can't believe that any sane voter would reelect the buggers either! (yet they probably would). Heaven help us!

Not A Great Race

2009-01-28T01:47:00.003-08:00

(A greeting card similar to this toon will be availabe on Zona's Zone soon! Look at the link on the left menu. Once there go to the SHOP and click on CARDS. Many more cards, posters, doorknob hangers and bookmarks are available and more going up weekly! - Zona)

Some Days It Just Helps To Whine... (or keeps our brains from exploding maybe?)

2009-01-20T01:26:00.003-08:00

Here we are again. And yup, I'm still up. I'm in pain. Big pain. I often do have some kind of aches and pain happening but not to the extent I've had this week nor lasting quite so long. I'm thinking it must be contagious. It hopped through the phone lines! I say this because my son, who also has CFS/FM told me he was having bad spasms this week.

Ok, no. That does NOT mean I'm mental, nor that CFS/FM is just all in our heads. Well, it might be in our heads - they say it is a brain-central nervous system thing (my own theory is that it's connected to the vestibular /sensory system and we are constantly on overload...) - but it most certainly is NOT imaginary. Oh, I wish it were. Imaginary things you could imagine disappearing and staying away permanently! We aren't quite that lucky.

For those of you who are curious, or care, the terrible spasms are mostly in my upper back and shoulders which isn't so unusual for me. But they've also been across the area of my diaphragm, and that is different, and annoying! Along with that I've also had tingling in various places, my gait feels off, my left leg heavy, and my brain seems to have taken a vacation and is as foggy was the skyline has been. I am not having fun.

Stress doesn't help anything, including these conditions. It does not cause them regardless what some make think, but it sure can make it worse. Like so many others these days income is sparse, to say the least. Money wouldn't cure all that ails me, but hey, a winning lotto could sure make me much more comfortable! Got one you'd like to share?

Should I mention the humidity and how I discovered that it is the culprit causing my coughing and sputtering for days on end? Ugh. Of course that doesn't help chest and back to relax much either...

When you're ill like we are small things matter. We're so limited in where we can go and what we can do. For most of us our laptops or pc's are our most prize possessions. They connect us to our friends, allow some of us to work and let us play even while in bed. Unfortunately I'm finding that using one is also compounding my back and shoulder problems too though. .

Some days just seem like this...

Economic Strategy

2009-01-06T08:24:00.002-08:00

Ya, I've been missing again, and very slow. i I'm busy planning my economic survival strategy. Another words, I'm trying desperately to figure out a source of income here...

I'll let you know if I find one.

Besides, It's snowing. Again. Ugh.

My Free Printable Christmas Cards !

2008-12-13T23:49:00.002-08:00

Ok So I am late this year...but here it is once again, my free printable Christmas cards for your use. http://members.shaw.ca/zonas_ink/christ1.html E-cards are great but sometimes you just need to have a nice real paper one to give to someone dear to you. I hope you enjoy them.

Check out my shop on http://members.shaw.ca/zonaszone for some other goodies and cards for other occaisions (after the holidays).

Zona

Missing! Alert - Zona's Missing???

2008-10-19T11:34:00.001-07:00

This is a Missing Alert! We here at Sunnydale Funnyfarm are searching for the patient in Ward C, Bed 3 -- Zona. She last posted here a loooong time ago, looks like she hasn't posted since August? ! (sheesh). She was last seen on her way to Dr. W's weekly therapy session, but she never arrived.

The patient in Bed 4 said Zona had muttered something about all these things she had to go take care of first. ---

She's about yea high, dirty blonde hair, washed out complexion and typically has a dazed and confused look on her face. She likes to wear scrubs or sweats, and is usually barefoot.If you happen to see her please tell her to get on over for therapy. She's long past due.

Dr. W's assistant

2008-08-28T01:09:00.000-07:00

Our weather here has been so wacky. Hot then cool, warm then cool again etc. Also been having thunderstorms and lightning which is strange for around here. That alone has done a number on my head causing earaches and dizziness etc (the storms and weather changes). But I've been managing so so til tonight.

Tonight I suddenly just bottomed out. You get that? I'm sure you do. I don't know where the little energy i had vanished to. Seemed to flush right out the bottom of my feet all of the sudden. Ugh. Then I started feeling yuckie all over, yada yada.

A couple days ago I once againi noted that perfumes can cause acid reflux REAL bad. My daughter had a friend who dropped in, walked past me outside and whammo blammo, first the nose and throat followed later by big time acid burn. Who ever would think reflux could be caused by frag exposure?! It took me a long time to put that two plus two together but I've noted it several times now. MCS is fun too. NOT!

Well... summer's nearly gone already -----

Zona

I Keep Hoping---

2008-07-29T20:06:00.003-07:00

It was be so nice to be able to post a real good report one of these days. If you're like me after I while you just don't think you should talk about being sick anymore. You know how it is? People will ask you how you are feeling and you hesitate, wondering if you should tell the truth or fake it? Just about the time you go ahead and say , "Well, it hasn't been the best week...I feel lousy" they will respond with something like "Are you STILL sick? Have you seen the doctor?", as if that will solve everything.

Of course you've been seeing the doctor for 28 yrs now and they just don't have an answer. The average person out there consuming all those commercails for pills to cure everything from bad moods to zits to anal itching just can't seem to fathom that there is no miracle cure for these illnesses. Sigh.

And so sometimes when they ask I refrain from saying much---but I don't want to lie so I don't say I'm well. I've contemplated about the "I'm fine" bit. What's fine anyway? What does that mean exactly? When I think of fine I think of fine art, beautiful paintings, a fine piece of furniture, a fine ---- Well... It also sometimes brings to mind "a fine mess", seems that's the title of a movie. Then there's fines you pay. I'm not fine. I'm ill. I'm tired, incredibly tired.

If I do say I'm fine will they next expect me to skip down the road or do a whirlwind cleaning through my house? Probably.

Perhaps my husband, who also has these illnesses, has the right reply? He says, "I'm average." Hmmm.... Yup. I think that will become my new standard reply too.

In case you're wondering I'm not feeling so on top of the world today... doo da doo da and no zippity.

Zona

Lapsed in Space ??

2008-07-21T23:13:00.001-07:00

Oh my! Where does time go? I noticed the date of my last post here and about fell over! Here I thought I'd posted just a bit ago and there I found just how wrong I was. Sheesh! Well that means either I've been very busy or very ill... hmmm.... seems it's been a bit of both??

So where do I begin? How to catch you up? Can I even remember that far back? I doubt it with my memory lapses. I've been lost in space, the space of time out there that seems to fly by when:

you're wondering about money source aka how to get some income
you're wondering what these symptoms mean, are they really new ones? or just old ones
with a slightly different bent
you're spouse is ill too
you've got a teenager with typical teenage angst
you're shoulder is frozen and hand numb and you've forgotten how to type one-handed

I'm not sure which of these constitutes the biggest excuse...er um... reason. Take your pick? I've been having all of the above.

So there you go, my reasons for lapse of appearance here. I will try to do better.

Oh, P.S. In between all of the above I have also been working on some new bumperstickers and t-shirts which are up on my cafepress sites (see my website link to the left there to find the shops) and a few more to come soon! I've also been trying to reteach myself how to use some of the software programs I haven't used for a while. My brain melts down memory if not repeated often enough it seems...

Zona

Weird Brain Hiccups?

2008-04-30T23:51:00.001-07:00

Ok ya so I know i have cfs (fm and mcs too) but boy does my brain tilt sometimes.

Have you ever been sitting there not thinking of a thing when some phrase of a song comes floating through your head? Well I do that frequently it seems. So tonight what do I hear in my head???

-------(hum along) "Get out the way for Old Dan Tucker , You're too late to come for supper ..."

What gives with that? I doubt I've heard that since we sang it when we were kids! Ha.

So for your convenience I have posted the words :)

Old Dan TuckerI come to town the other night I heard the noise and saw the fight
The watchman was a-runnin' roun' Cryin' Old Dan Tucker's come to town

Chorus
So get out the way for Old Dan Tucker
Get out the way for Old Dan Tucker
Get out the way for Old Dan Tucker
He's too late to come for supper

Old Dan. he went down to the mill
To get some meal to put in the swill
The miller swore by the point of his knife
He never seen such a man in his life

Repeat Chorus

Old Dar Tucker was a fine old man
Washed his face in a frying pan
Combed his hair with a wagon wheel
Died with a toothache in his heel

Repeat Chorus

alternate version verse and chorus

Tucker was a hardened sinner,
He nebber said his grace at dinner;
De ole sow squeel, de pigs did squall
He 'hole hog wid de tail and all.

Gran' Chorus.
So get out de way! Get out de way!
Get out de way! Old Dan Tucker.
Your to late to come to supper.

So do weird songs come floating through your head? What was one ?

zona

Only when I'm wasted?

2008-04-07T00:17:00.002-07:00

I got to thinking today. I was thinking about posting here again, talking about how it is to live with Cfs, FM and MCS in hopes that the world out there may better understand what it's like and for those fellow sufferers, so they know they're not allow in the weirdness of these symptoms. Yup, that was my intent in having this blog here.

For the last three days or so I've been totally wasted. I'm so weak and tired - no, not sleepy tired so much as absolutely wiped out wasted not one drop of energy to be found exhausted - I could cry. In fact when I get this exhausted that is exactly what happens. I have no energy to scream. I feel like crying. And I rarely ever cry.

And so here I sit telling the whole world (well, the few readers here anyway) that I feel like a total basketcase. It's funny how a few days of this can feel like an eternity. It feels endless, like it's not only been going on forever but will never come to an end, and yet I know that a mere few months ago pre-"the bug" I wasn't feeling this exhausted.

I've also been in incredible pain. It seems my back and ribcage problems are becoming chronic instead of up and down as it had been. And when it's hurting it is right through the roof pain these days. And me who can't take narry a drug including pain meds. Thank God for heating pads and dear friends to whine to, to keep me a bit sane. (I think I've moved past sane today).

Can someone breathe for me? I'm toooo tired...

I really need to discipline myself to post here on days when I'm not feeling so rotten...or so I told myself as I sat down to write this tale of woe...

(ps ... I did manage to design a couple new tshirts this last week which I hope to get added to my shops soon. Bills don't pay themselves and for some reason just refuse to wait!)

zona

That Bugger Bug

2008-03-22T22:27:00.002-07:00

I can't believe how fast time goes by when it's dragging! Looks like it's been a while since I posted here again and yet I haven't a clue what it is I've been so busy doing!

For the last week plus both dh and I have had the Bugger Bug. You know the one going around that gives you the three day headache from hell? It wasn't a brainthrobber but rather one of those 'my heads screwed on so tight it might explode' ones but this one caused pain in my face and numbing of my fingertips! At that time I wasn't sure it was a bug. Wondered if I had gotten yet some new malody to worry about. But after consultation with other Bugger Bug victims and comparing notes of sore throats, earache, faaaatiggggue and body aches we concluded it was indeed the dasterly bug.

This menace has a bad habit. It rebounds. And from what I hear, sometimes more than once. ARGH. Yup, it did just that here too. Just about the time I thought I was getting over it, and did the usual stupid thing of over-doing it one day trying to catch up on a week's worth of non-housekeeping it conked my over the head again. Ugh. And so I sit here tonight writing this post to you....

Did I tell you it is ummmm, interesting to have two people in the same house who are ill all the time? :P

At least my daughter is having fun. She's off on a trip with her youth group for spring break. This will be the first Easter without her. Feels kind of strange. She told me I could go on her trip with her vicariously. She's taking lots of photos...

And before I forget.... Happy Easter!

Zona

I hate Pre Spring !

2008-02-29T20:49:00.002-08:00

What is it about this time of year? I can't breath. I'm cranky. I feel miserable. It's a bit later this year than most but hey, I would have been very happy if we just could have skipped this part of the year! Seems we did last year maybe as I don't recall feeling miserable like this last year.

But I can at least say Praise the Lord! I havn't gotten that awful flu I hear has filled all the ER's across the country. Arizona's been badly hit I'm told.

So to all your wheezers, sneezers, (I'll be polite here and say...) tummy achers, and generally yuckers you have my sympathies!

Zona

The Little Guy and The Giant - Some "new" things aren't so new

2008-02-05T19:58:00.000-08:00

Today there was an article on the Drudge Report titled "New Way To Kill Viruses: Shake Them To Death" . Something sounded vaguely familiar and when I went to read the article it jogged my memory. A year ago I had read an article about a man named Rife who had invented not only specialty microscopes but a way of killing viruses using radio frequency. So how is it that this is a new discovery?Actually Rife made his invention in the 1930's. Talk about not new!

So why haven't we heard more about this until now? Why hasn't it been used? Would it surprise you if i gave you a three letter hint? AMA That's it. Just like modern our researchers today you won't get very far if your notions don't follow the prescribed and approved path and Rife's sure didn't. Is it any wonder that so many of these new conditions, MCS, Cfs, FM haven't had much attention let alone much progress in terms of treatment? !!! Have you read Osler's Web? It's enough to cause the hairs on your neck to rise right along with your ire.

If you're curious about this old discovery you might want to check out these sites:

http://en.wikipedia.org/wiki/Royal_Rife
http://www.theseekerbooks.com/articles/cancerconspiracy.htm
http://educate-yourself.org/cn/cancercurethatworked1997.shtml
http://www.essense-of-life.com/info/rifefaq.htm
http://www.braintuner.com/lakhovskymwo.htm
http://educate-yourself.org/be/lakhovskyindex.shtml
http://www.rife.org/

I wonder if the creators of Star Trek didn't know of Rife's device? Hmmmm....

Zona

The Little Guy and The Giant - Some "new" things aren't so new

2008-02-05T19:37:00.002-08:00

Today there was an article on the Drudge Report titled "New Way To Kill Viruses: Shake Them To Death" . Something sounded vaguely familiar and when I went to read the article it jogged my memory. A year ago I had read an article about a man named Rife who had invented not only specialty microscopes but a way of killing viruses using radio frequency. So how is it that this is a new discovery?

Actually Rife made his invention in the 1930's. Talk about not new! So why haven't we heard more about this until now? Why hasn't it been used? Would it surprise you if i gave you a three letter hint? AMA That's it. Just like modern our researchers today you won't get very far if your notions don't follow the prescribed and approved path and Rife's sure didn't.

Is it any wonder that so many of these new conditions, MCS, Cfs, FM haven't had much attention let alone much progress in terms of treatment? !!! Have you read Osler's Web? It's enough to cause the hairs on your neck to rise right along with your ire.

If you're curious about this old discovery you might want to check out these sites:

http://en.wikipedia.org/wiki/Royal_Rife

http://www.theseekerbooks.com/articles/cancerconspiracy.htm

http://educate-yourself.org/cn/cancercurethatworked1997.shtml

http://www.essense-of-life.com/info/rifefaq.htm

http://www.braintuner.com/lakhovskymwo.htm

http://educate-yourself.org/be/lakhovskyindex.shtml

http://www.rife.org/

I wonder if the creators of Star Trek didn't know of Rife's device? Hmmmm....

Zona

Working From Home

2008-02-04T00:40:00.000-08:00

Seems to be no matter what kind of work you do if you work from home people assume things...
like

*it's a hobby
*you just like working
*you'll work for free
*you work cheap cuz you don't need any money
*you probably don't know as much as a 'professional' ...working from home means you're an amateur??
*ANY hours are work hours (they can call you day and night)
*they might 'help you out' by referring friends who also think you're cheap, doing a hobby, don't need money
*they think it's alright to complain more

That's my assessment for the week...

I've run into all of the above. I'm sure it is worse when you're ill and they know you're ill. The assumption is that if you are THAT ill you get disability or something of course!

However these things also apply to others who aren't ill but work out of their house. My brother got laid off and is now going to go into business for himself. He's running into the same stuff. I could have warned him about this...

Time flies! And it's Christmas already?!

2007-12-21T23:02:00.000-08:00

Boy am I sloooow! Just saw how long it's been since i posted here. I have sooo much to catch you up on... but for now I'm just going to post this update:

Hi all

What a week! Somehow we always end up trying to do everything all at once before christmas. That isn't the plan, it's just the way things seem to go.

We finally got the tree up...that took some doing as lots had to be done first... And i'm finding that even with the tree up i'm still really not in a christmasy mood...

Then there was 101 other things to get done or interupting which i have forgotten about now... save for making calls to someone who owed us from back in nov that STILL hadn't paid us! I've been sitting here worried about utility bills etc for weeks (still am) much less trying to figure out how to do something for christmas for my dd, and you know teenagers! How do you find a cheapie gift for a teen that will tickle them as much as it would a toddler? obviously that has kept me quite stressed...

then dh started having those horrid coughing fits again. Nope still no results from tests and still waiting for MRI to be done. All we know is he has a hiatal hernia and the med they prescribed for that cost $57 a month. Got 10 days supply but it hasn't made any difference. Of course he wasn't having heart burn so how would he know if it was helping or not???

Along with that dd first had some respiratory thing which i prayed dh and i didn't get ! I got a touch but seems no more and dh hasn't PTL...but, we seemed to get something stomach/gut instead. Still dealing with that a bit but thankfully it's not been real bad like my friend here in town has been!

So how do you do any shopping when 1. you really shouldn't be out in stores with the stinky stuff and 2. cfs- no energy! and when 3. we BOTH have that?? LOL. oh and of course not to mention 4. no income! But thanks to a generous friend I had a bit to get something for dd. So like crazy people that we are we decided best thing to try was going to wallyworld at 2:30 a.m. since they're open 24/7 now. Figured NO ONE would be shopping at that hour! Well... there wasn't as many as last year. yup we did that last year too! But there was a few and it just happened that a guy was mopping the floor right in the area i needed to go with , yup, stinky stuff! oy vey!

I NEVER do shopping malls and rarely ever ever do wallyworld (walmart for those of you who haven't heard that LOL). On the rare occasions i have tried wallyworld it is always during 'off hours' and only the first front 1/4 of the store near the door. That's all the oomph i have on a GOOD day. Makes it hard when what you're there after is in the back corners! Dh can do those sometimes but you know men. Some things it just takes a woman to pick out huh? LOL

Well 20 mins in wallyworld and we were both crawling...zapped.

Came home and dear hubby he fell right off to sleep. Me? Oh no, not me. Wallyworld did something to my brain and i was buzzing for hours, couldn't sleep. Sometime after 7:30 i finally dozed off...until the phone rang around noon and woke me....

did i mention i couldn't find anything for dd at wallyworld???

So today we're beat...

and tonight i got one of those sudden headaches. I just started getting those in the last several months. Didn't have them before. Somehow tonight i have a feeling the weather is playing a part in triggering it...don't ask my why cuz i don't know LOL. Then i started itching on my forehead. That is something else i only recently started getting! Have no clue why that either except maybe it's just too dry in the house?? no rash etc just itchy...and annoying.

So that's what i've been up to.

How about you?

zona

Those Little Awful Men Again !

2007-11-09T23:15:00.000-08:00

I guess tonight is one of those nights, though this is a tad different than usual. Someone has snuck in and
pounded spikes down into both of my shoulders! Youch! He must have whistled and invited his friends over because
as the night has progressed I'm hurting in more and more places :(

It could be the weather? It's cooler and feels damp tonight.

It could be stress! Because I've sure been stressed all week with one thing after another! But I suspect it is not
just stress that has produced this amount of dis-ease.

I'm sure it is CFS/FM ... because I'm so weak and weary tonight I feel like a wrung out sponge. . Blah.
A cozy bed sounds good about now, but I have the feeling it's going to be a difficult night for sleeping...

Zona

an inconvenient heavy truth?

2007-10-16T22:55:00.001-07:00

I think there's been a gravitational shift that no one's told us about. My legs feel like they weigh 100 lbs a piece and there's an anvil on top of my head! I feel like lead...

Pass the helium!

Zona

Web Seminar - I shudda told ya before

2007-09-17T00:45:00.000-07:00

Ok I admit it. I'm waaaay behind in posting here on my blog. I should have told you weeks ago that I was going to be a guest speaker for Rest Ministries annual seminars. Well, it's over now...

It seems lately I've been so busy doing nothing! Ok, I've been doing something. Surviving! And taking husband dear to doctor appointments and for tests etc etc all of which has thus far resulted in nada. They still have no clue what is causing his awful coughing fits and now ear pain and hearing sensitivity. (more on this another day). I know its at least partially due to MCS stuff. But then who listens to me?

But back to the seminar...

I was asked to speak on "Raising kids while sick". At first I really bulked at the topic. I thot, what the heck do I know about raising kids?! I've only had four and now 7, soon to be eight grandkids and still don't know much. Of course I did raise them during the 27 yrs I have been ill so I guess that did qualify me to speak on the subject. I could write a book! Ha! But don't expect all those swell little tips and tricks on entertaining Susy because on that topic I have little clue anymore.

So the week was swamped with getting daughter settled into school and listening to dh (dear heart? dear hubby?) moan, groan and growl from every little sound in the room. Poor guy, he hurts. Poor me...he's grumpy. And then there was the usual "where'd all these dirty dishes come from! Did we have company during the night while I was sleeping?" and "who made this mess in my living room?". Sigh. Housework NEVER stays done!

I sweated and moaned over a blank screen for weeks trying to determine what to say that would sound half way estute, if not down right impressive. Blank screen. I so wanted to have a marvelous, entertainingly funny speech. But all I kept thinking of was one serious message and that dear friend is what I ended up giving.

Oh but there was some amusement! I've forgotten all the things that sidetracked me all day thursday. I only remember that fifteen minutes til the time I was to begin the speech we still hadn't gone to get the coveted cup of Timmy's decaf coffee i had planned to treat myself with during that hour talk. So I sent dh out to get it alone. After all I couldn't show up late!

Daughter dear accompanied dh to Timmy's (Tim Horton's for you canadians). Here I was setting up my windows, it required four open windows, readying for my talk when at one minute until start time the doorbell rang!

No one here but me, the cat and my laptop.

I glanced out the window to find dh's friend standing by the front door and no one to let him in but me. I neglected to tell you that dh was going to help me during this one hour presentation in case I needed to slip away from the computer for a moment. I looked at those four windows. I looked at the clock... 45 seconds to start... And I looked at that fellow standing at the door.

I yelled out the window for him to go around back, made a mad dash to the back door to let him in and as I turned my back to him dashing back to the computer I said "you'll have to entertain yourself for a few minutes. I have a conference...!
Did you know your fingers don't huff and puff? But they sure can fumble over keys!

I can tell you that it requires just a bit of coordination and brain power to cut and paste from one window into another, hit buttons and read and then repeat that process again. I believe my eyeballs were spinning.

Half way through this wonderful speech on what a great calling and ministry it is to raise children my dear daughter bursts into the room and just HAS to tell me right then how upset she is about something. No, it couldn't wait until after the seminar I was leading she said. This was an urgent annoyance that just had to be expressed right now!

Ah yes. Kids are wonderful. And like the terrific mom I am I kept cutting and pasting my text about the joy of motherhood while my daughter stood there griping and crying about her latest upset.

And I was asked to speak on raising kidlings? Ah Huh.

Well... I was glad to hear that my guests had been encouraged and appreciated the message. Even got some applause! :)

Maybe they would have really cheered if they'd known I had solved my daugher's world crisis in the middle of that speech?

Zona

It May Feel Warm and Fuzzy But...

2007-08-08T11:19:00.000-07:00

We're all concerned about the current state of health care costs in America, especially those of us who have serious chronic conditions. That concern is being ramped up like bellows blasting hot air on ambers in the fire by thoses who really think we'd all be better off having Nanny take care of it all for us, and infer, "for free!".

But how free is free? We already have to deal with a CDC who have finally just come around to admitting CFS is a 'real' illness---only took them how many years? And you know what that lag accompanied by the suggestion of being "all in our heads" has meant in terms of treatments, research monies much less how ignorant it has kept our neighbors and families. Just what makes you think that the government will be any better at handling our health care?!

I will keep attempting to awaken you to the dark-side of socialistic medical until I am blue in the face, not because I'm a glutton for punishment but because I fear what it will mean for my kids and grandkids one day, particularly if they get some dreaded chronic illness like we have.

[HINT - My canadian husband's doctor scheduled him for several tests and to see several specialists way back in April. It is now August and to date he has finally had two tests done, one just yesterday and one was just a blood test that didn't require scheduling, and seen one specialist - an allergist (the wait time for the allergist alone was three months!). We still haven't heard when they can get him in for the remaining tests and specialists....]

In the meantime here's a link to an article I just read that points out that one of the reasons our insurance costs have risen is legislature's intrusion into private contracts. An interesting point I hadn't thought about yet.

I pray that everyone will at the very least STOP and truely debate - listen to both sides/discuss/ponder/ evaluate/think - before blindly following the sheep who are driving us over the Socialistic Health Care cliff!

Achy Breaky Feelin'

2007-06-27T02:08:00.000-07:00

I have been surprised at how well I was managing health wise over the last several weeks esp considering all the stress etc we've been under here. In ways I was doing better than I had for a long time! It was a good thing because I had to do all the driving and most of the errand running and often alone too, which is something i hadn't been able to do for years. With dh totally incapacitated it was sure a good thing!

Then, this last week I got the crud, cold-flu thing, probably same as my daughter had two weeks ago. I blamed my sister for giving it to me over the phone! LOL She's been real sick too. I figured sooner or later I was going to hit the wall cfs-crash wise. Instead of slamming into it, it seems more like I deflated into it slowly....like it snuck up on me. I did notice that I was feeling more and more off each day when i had to drive somewhere.

Funny how that has caused me to notice that some of that feeling I have some time which feels like struggling to stay conscious is actually fatigue... because as tired as i am I rarely feel sleepy. Odd huh? Well for a couple of days now I found myself waking up 5 mins after having nodded off while reading email etc and hadn't even realized how tired i was! It's like my switch is missing? or at least that part that goes between wakefulness and sleeping... that groggy, drifting off stuff normal people feel.

So tonight I'm tired and very very achy and still sneezing, coughing and that sort of thing. I sure hope dh is getting better because it's not going to be much fun if neither of us is fit to go get groceries and the other things we need to do ! When we're both bad at the same time it gets to be a bit much and that does happen----

Part of the reason I've been so quiet is because we've been working on a new phase for our business. ...getting certified to sell and service a business-accounting system software. Tons of stuff to do to get this going. Honestly I'm finding it to be a bit too gruelling for me ....but as I have to get an income somehow this hopefully will be another option to go along with our computer business. I don't think it's really the type of thing we should be getting into for health reasons... but working from home under these circumstances sure narrows the choices a lot...

Oh btw... more and more I'm attributing part of the reason for managing so well (before) to the lower temps we have had. It was between 50-70F, usually in the mid to upper 60's which felt soo much better to me than when it hit 80. I am just NOT handling heat at all these days....

Call Me Not Irresponsible

2007-05-08T00:56:00.000-07:00

I was thinking about Job's friends today, wondering if I perhaps had a few of them.

Have you ever wondered "is it me? or is it them?". I'm sure you have too. Today that's what I asked myself. A couple of people I know seem to think I'm being irresponsible because i've not done anything to solve a problem I can't do anything about. One also seems to think that *I* should be talking to the relatives involved when there's a family member who's place it is to do, more than mine. Hmmmph.

Well I decided I'm not going to do that this time. As for the DOing part of it, the physical stuff... well these friends do know i'm ill, some of them are ill themselves so you'd think they'd understand, right? Nope. And as far as having a resolution to this problem...well what can I do about it? I don't have a magic wand to make something that isn't. I can't change the facts.

I find it very frustrating.

Recently a PWC friend of mine and I were talking about being ill and needing to take care of ourselves too. We tend to put husbands and kids and everyone else's needs first. We also tend to feel like we're being selfish somehow if we put our own needs on the list there. The perpetual doings and givers, that's what we're supposed to be. Who told us that? Somehow we both suspect that it's partly from our upbringing and how we have thot about some scriptures...which makes it mighty difficult to do otherwise. Along with that goes being responsible. We're big on being responsible, this friend and I. We've had that pounded into our heads and we ourselves would probably endorse that too. And yet thinking that way has put us both in the seat of being expected to be responsible for everything including things you just can't do anything about!

So I still sit here in a quandary unsure of just what i really *should* be doing in order not to be the bad, lazy, wrong, guy. Hmmm. It's tough being ill. It's really tough when something needs to be done and you just can't do it and some would like to think that therefore what happens is thus all your fault.

But somehow I'm sure we're not to neglect ourselves either...

(EvenJob had one true helpful friend. Thank God for those! The others will drive us nuts!)

zona

Spring has sprung and so have I ?

2007-04-23T22:07:00.000-07:00

My how time flies when you're dashing off to bed! Unbelievable! And here I thot I'd posted not that long ago. Ooops!

So I dropped in just to post a reminder that May 12th is about here again. I hope you all will remember to let people know that is CFS Awareness Day...and FM Awareness and MCS Awareness Day too. Yes, somehow they put them all together on the same day. I suppose that makes sense since they do seem to overlap symptoms and many people have more than one. Some think they are all one and the same. Which one depends on who you talk to.

I had planned to make Doorknob hangers and small downloadable posters you can print off and stick in your windows, hang on your front door etc but unless I get to feeling better real quick and find some time I might not get that done this year. I will post here and announce it if and when I do. Meanwhile do take a look at the other things that are already available on my site including the t-shirts ! http://memebers.shaw.ca/zonaszone !

Zona

It's Easter Soon !

2007-04-03T16:42:00.000-07:00

Easter time snuck up on me this year ! Here I thought we were weeks away yet only to find out it is this sunday already. How time flies when you're laying in bed, huh?!

I could easily whine about the tremendous brainfog and fatigue I've been having these last several weeks but instead I wish to think about spring, and Easter...

Besides bunny rabbits and cute little chicks, eggs all decorated in pretty shades of pastels I think of children's giggles as the hunt eggs and chew on jelly beans.

I think of the newness spring brings. Flowers poking their noses through the soil. Birds chirping in my trees. Mostly I think about the new life our Saviour gives, the reason we celebrate Easter - His sacrafice and Resurrection.

This year I wish to stop a few minutes and ponder not only the spiritual aspects that salvation brings but also what that means to our bodies and souls. How thankful I am that I do not have to be perfect in myself. I don't have to carry the weight of the world on my shoulders. And I don't even have to carry the weight of my own failures, shortcomings and sin. He daily carries my burdens.

Because He lives I can face tomorrow----

How happy I am for I know that My Redeemer Lives !

Sometimes The Best Intentions Hit Fans

2007-03-16T20:13:00.000-07:00

My daughter's on a spring break trip with youth group this week. I had so many ideas of what we'd do these ten days alone. There's plenty of work to get caught up, a teens bedroom to sneak in a clean, and hey, time alone with hubby - we should have some fun too, right?! Well---

Getting her ready and off for her trip ended up requiring 4 hours of shopping to stores I normally avoid. I didn't stay in these stores for more than a few minutes. Apparently though, it was one of those days when every man, woman and teen seemed determined to wear as much scent as possible. Compound that with smelly products, floors and counters cleaned with stinky stuff and you get the picture. It reeked everywhere!

There are some things in life that just seem to require mom's input. Hunting down these things and determining how much of the bank they were going to break was one of them. I was stuck. I devised all kinds of plans - waiting in the car while she held them up at the window, but many stores have no windows... waiting until she found what she needed making a mad dash inside long enough to nod my head one way or the other and then sending dear husband in to make the purchase. Even the best laid out plans can fail when solid walls and indecision attack you.

Of course it didn't help that we needed to find shorts when the temperatures outside were still reminiscent of snow flurries! I learned that there are at least 10 locations in town that have no such thing this time of year.

While moving like a snail down the aisle I resigned myself to one last store. If they didn't have the required goods it was 90 degree weather in jeans. It would have to do. Crawling out the door to the car should have given me a clue that that was a bad idea. I recogized the signs of hitting the wall, sure. But i was determined. Afterall she has no other mother.

Now I never "do" Wallyworld. The lighting, the frags, the mob, all of it affects me badly not to mention that usually what I need always seems to be in the back corners! I felt thrilled when I saw the woman's clothing near the front. (shows you how familar i am with Wallyworld these years?). I pointed at one rack instructing dear daughter to shake a leg all the time knowing that the old lady looking shorts wouldn't meet with her approval. I scanned to my right looking for some a bit more hip but only saw winter wear.

It was just about that time that I started having a funny feeling in my head, followed by a fuzzing of the horizan where everything slowly fades to gray. I muttered to my daughter to take me to the door. I'd almost forgotten which direction the door was. I didn't think she heard me but I couldn't wait any longer. The floor was beaconing and I knew if I didn't scoot I'd be laying on it any minute.

By the time I got to the car I was shaking head to foot. The cooler air that I'd hoped would snap me out of the fog didn't help. Putting feet up on dash and slouching back in the position that dear hubby finds so embarrassing to find his wife in out in a parking lot, I hoped for a mini revival. But even that didn't help. I knew right then and there I had gone over the edge head first into a real good crash. I try to avoid those severe crashes....

So here I sit, seven days later. Those chores I thought I'd do are still undone. The laundry pile is growing. Dear husband (who also has cfs/fm and mcs) and I have pretty much been sacked out on the bed like two snails in suspended animation wishing we could teleport groceries in from the store. Obviously we didn't do anything special together this week other than breath and watch TV.

I'd like to take this moment to thank those broadcasters of good classic movies, (not that the movies were all that great this week), of classic sit-coms shown late at night when I can't sleep, and the creator, writers and director of the new show, House - as in Dr. House.

I'd also like to thank all my online list mates for their patience with Yahoogroups burping and for those who've posted to me through this blog. Sometimes sanity is at stake.

I thank the Lord for being with me. I thought of Tom Hanks in Castaway saying "you just breath". And I'm still breathing.

Sometimes the best intestions hit the fan and blow up all over you. This was one of those times.

And So It Goes...?

2007-02-15T23:25:00.000-08:00

Well... To say it's been a week would be an understatement maybe ? Between news of my daughter's condition, the youngest one's pain, dh still trying to recover from the last virus (and me too), plus trying to work through all this---well... yup, it's been quite interesting! Ah hum!

I thought I was finally recovering, save for the remaining cough and lung congestion a bit. But I found myself nose diving into that negative energy hole, each day becoming more and more exhausted. Ugh. (It hasn't helped that either Yahoo or my isp has been eating some of my email! My poor confused brain has enough trouble trying to follow things.)

One day I noticed the tips of my fingers felt numb, both hands. Ok, so maybe I had a pinched nerve in my shoulder or neck? Made sense. Then the next day after walking a few short paces I noticed my feet felt numbish and my legs felt like lead. Hmmmm, haven't had that for a long time. I've been this way for days now.

I did the mental inventory. Have I been around anything? ie toxins, triggers? Did I eat anything different? Why's up with this?? I haven't come to a suitable answer yet.

Tonight I've been laying here trying to stay awake, got to finish that Literati game with my sister and at least attempt to beat her once! Little gremlins have been strutting across my body pinching and causing muscle cramping in various locations at random. Boy this is a weird illness!

Zona

Sick...sick sick

2007-02-04T01:14:00.000-08:00

Ok ya i've been slack and you haven't heard from me for a while. What can I say? I've been sick. As a matter of fact it's taken me 5 mins to type this with sneezing interuptions. I'm achy head to toe. Stuffed up and irritable. Did I mentioned I feel miserable??

I had some 'bug' a couple weeks ago that lasted almost two weeks, started feeling a tad better only to turn around and get this crud. (maybe from having a daughter in the house? but SHE's not sick). It's funny that we usually FEEL like we have some bug or virus thingie yet many PWC's actually don't get regular colds and sometimes flues. Our lovely scrambled immune system! This has been sooooome year for illness.

But there's real irony in all this. It's like another PWC and I were talking about the other day... In some very bizarre difficult to explain way sometimes feeling sick from a 'normal' type of illness almost (but certainly NOT quite!) feels good. NO I DO hurt and I am miserable! It has more to do with HOW the symptoms feel. When you have a normal bug often you just flop out and wait it out and sometimes even sleep during the day. Like I said, it's hard to explain...

zona

Silent Miracles

2007-01-18T21:06:00.000-08:00

I was sitting here last night wondering why, with everything going on in my life I wasn't feeling real despair. Granted I'm worried, stressed and feeling overwhelmed but I can't say that I was feeling necessarily unhappy or terribly distressed.

Obviously, I'm sick. I just went through a horrid respiratory viral thing that lasted a couple weeks, not to mention the typical CFS, FM and MCS stuff I deal with. Then there was the typical pain, problems sleeping and stomach problems. My one and only vehicle is biting the dust and I can't afford to replace it right now, not even sure if we can afford to fix all that needs fixing on it. My teenager isn't the perfect female angel I had wished she was (ha!). She's not inspired about school or helping with chores. (where did i fail?!) The rest of my family is way too far away to visit, especially in my condition and my home is decorated with many piles of stuff that I'm too tired to deal with. And that's only the beginning of my complaint list!

So surely with all that I should be distressed! I have every right to wallow is self-pity, sigh, moan, groan and scream to you. Right? Right! But last night I didn't feel like it.

Sometimes I wonder why the Good Lord seems so very far away and why on earth can't He do for me what I see Him doing for others, or so it seems anyway. Why me? What did I do? Where's my miracle?

Then it struck me. This 'out of mind', oblivious to distressing factors IS my miracle! Duh! How many days go by where I know my circumstances better than anyone else, know the reality of the struggles and obstacles yet happen to notice the smile on the cat's face, hear the birdies sing, and enjoy watching my husband groan as I tell him a very bad joke?! Many. Oodles! Probably at least 90% of the time!

Wow! That's pretty dang amazing considering ----- ! This scripture has always meant a lot to me. I didn't think I'd reached there yet though...

Philippians 4: 12 I know what it is to be in need, and I know what it is to have plenty. I have earned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13I can do everything through him who gives me strength.

That was last night. Today my heart's been flippity flopping in my chest, my nervous system is wacked and on tilt and I'm feeling quite distressed.

Well...sometimes I guess I'm in that 10% of the time moments. Still I'm thankful for those silent miracle moments...

zona

Truth or Consequences

2007-01-11T02:26:00.000-08:00

Being sick on top of being sick is the pits. For the last several days I've had the flu, the whole body, head to toe aching, stuffy headed, sneezing, sweating, vertigo producing too. Sacked out right next to me in the bed is hubby who's also feeling quite cruddy. Actually it was he who gave this unwanted gift to me! I feel miserable!

Called a relative tonight to see if I could beg a ride for my daughter to youth group explaining we had the flu. "What? I thought you had it last week", she said.

"No, this is the REAL flu," I said. "The over-a-week, coughing, sneezing, aching, sweating, queazy, dizzy, influenza type flu". I wanted sympathy in my misery and it was the truth! I was also hoping for some help with transportation.

Somehow I suspect that she figured that a. I had lied last week in order to get out of a command invite, or b. I must always lie because no one can have the flu that often! or c. I lie all the time and never have anything at all physically. That was the tone I heard in my ear anyway.

The fact of the matter is that the symptoms of CFS/ME are often very much like a virus, flu, and it's often just plain difficult to know for sure if it is a bug or just more of the same until other evidence somes along, like the symptoms disappearing or reports of others in the area having the same symptoms around the same period of time and THEY say they have a bug. However this time there was no mistaking this was something different that usual and much worse than the garden variety of 'bugs' that usually go around, even with CFS/ME.

Now I would have thought that as sick as I am I sure wouldn't need to convince anyone this time. Just listen to me! One peek at my face tells the story...but then it was over the phone I guess. Maybe I should have sent over the pillowcase still damp from my waking up soaked with sweat! Or the box of spent tissues next to the bed?

Daughter managed to find a ride with someone else. I could quip that I wonder what would happen if there was a catastrophe like a bad fire or something and we needed help, but I already know the answer to that one. Three months worth of smoke filled skies and two adults with MCS plus CFS/FM, one of them with horrid uncontrollable, wheezing cough that required an inhaler and no one to pick up the inhaler for us... Been there, done that already. I know the answer----

til a better day-
Zona

Christmas is Coming ! Cards & Doorknob Thingie For You

2006-12-15T20:28:00.000-08:00

I just put up a doorknob hanger that is for the christmas/new years season you can download and print off.It also has a Friendship bookmark on same page :)

go here http://members.shaw.ca/zonas_ink/misc.html and click where it says NEW blah blah at the top. It's a pdf file.

Also you can go here to get printable Christmas Cards I've designed...http://members.shaw.ca/zonas_ink/christ1.html

Merry Christmas !

Zona

Hey I'm still a Pro !

2006-12-07T21:44:00.000-08:00

Perhaps many people don't realize that some of us can't get disability, not because we're not that ill but because we just aren't eligible to apply for it in the first place. At least that is what I've noticed over the years. I won't even go into another observation, the attitudes that reflect this notion that if you can't work you don't deserve and should stop complaining and whining and be happy you have anything at all... That's a topic for another post. Right now my mind is more on the whole matter of working from home while feeling too ill to be working at all... and the general public's false notions about that.

I've been ill for over 26 yrs now and during that time I have worked from home, owning and running various types of businesses, whatever I can manage. Those businesses ranged from fixing computers and networking, to architectural design and drafting to sewing and graphic arts. Yes, I'm lucky to have a variety of skills to fall back on that are do-able from home, well mostly do-able from home and I realize that isn't the case for many who have these illnesses.

Currently I have a computer repair/networking/administrator business. Do you know how difficult it is to compete when you can't leave your home? But that's only part of the problem. The bigger part is that somehow people believe that if you do something from home you're doing it as a hobby and therefore shouldn't expect to get what the 'pros' get. Well excuse me, but I've been messing with computers since I took programming back on a main frame univac with keypunch! (one of the few advantages of getting older is being able to make claims like this LOL). I AM a pro! I can build you a computer, set up the thing, network it and ---well whatever you need. I can't say that I LIKE doing this much. I'd rather be painting, writing or doing something really creative but we do what we have to do.

Why people think that way I don't know. Every week there's some guy on TV with long hair and blue jeans that some super duper big shot who does something that pays a lot of money who has his own business and he works from home and everyone's in awe and willing to hand him the big bucks. Me? Well they figure I should be thrilled to get what their teenagers geek friend gets even tho said geek friend is more talk that knowledge.

And seems everyone has a friend who's a computer expert these days---

--until their 'friend' goofs up and accidently deletes all their important files and then in the process of fixing that 'goof' manages to wipe out their operating system---

Then they call me. But still the next time they run into a problem the still figure somehow that same teenage pimple faced geek can fix them right up, else they'll have to go to some 'pro' who has a shop downtown and a half page yellow page ad to pay for each month.

Maybe if I had a Mercedez Benz in the driveway they'd think differently???

O Give Thanks For Family and Friends

2006-11-19T21:15:00.000-08:00

I had the pleasure this weekend of seeing my brother whom I hadn't seen for ten years. I was thrilled he was coming. I was stewing over him coming. Yes, as with many things about CFS, FM, MCS it is quite possible to have two emotions going at the same time.

You see we're a close family so of course I was absolutely besides myself over the thought of landing my eyeballs on his face again! I was so looking forward to catching up on everything, though we do talk on the phone a lot. But I had to do the CFS thing first...

What's the CFS thing?, you ask. Well it has to do with surveying the house and realizing how it takes us a hundred times longer to accomplish a task than the normal person and wondering how the heck you're going to dispose of the piles in time without ending up majorly crashed just in time for your visitor to arrive! It is a MAJOR problem and one that often causes a slight nervous breakdown. I am no different from the rest of you with CFS. I contemplated that breakdown...

...and I wondered how I would manage to have a day and a half conversation with someone, no matter how much I like them, when even on a good day I can typically only handle about an hour at best. Sigh.

Then there's the MCS thing. What if they arrive stinking of Au De La Pew? Can I toss their clothes out in the rain? Dare I ask them to walk around the house in my silk nightie or strut naked? Oh, so many complications to what for everyone else is no problem at all.

Then there's the more hidden things, the ones that we don't usually think about and if we do have a very hard time admitting even to ourselves let alone anyone else --or in a blog! Hermititis! When one is homebound the majority of the time, having been isolated from family and friends, abandoned by many once they figure out that you can't go out and play with them anymore, one can loose their social grip -- forget what it's like to have a living, breathing, talking person in the room with you at the same time. And you wonder just what you do with them.

I hear others talk about this too, when they dare to mention it. Because we all know how much effort the "researchers" and CDC et al have put into 'proving' we're all just mental cases no one EVER wants to even ponder anything that might remotely be tagged non-physical. And is it any wonder?! If the public had a clue just how much time and money has been poured into proving we are NOT ill, wasted years while people suffered from pain and lack of helpful treatments, they'd understand just how far we would go to avoid these kinds of discussions! But I will venture out and mention it here.

It IS difficult for many reasons, some of them very much physical, biological, like the problem of sensory overload so many of us have, cognitive function, and reactions from fragrances etc. It is also difficult mentally and emotionally in ways too. They say it takes 28 days to form a habit. How many days does it take to break one? We observe how toddlers develop in social skills. It takes a while. Well let me tell you! When you spend the majority of your time alone (save for those who share your abode)you begin to wonder if you even remember what social skills were! You WANT to socialize --- well in ways you do.

For some that desire goes right out the window with cognitive ability and pain-free living as if some area of your brain that carries the 'want to be a part of it' gets skewed at the same time. But ya, some of the time at least I still wish to socialize. But do I remember what that's like? Most of the time when someone is in the same room with me I'm subconsciously trying to look normal, act 'normal'. That takes a lot of effort, effort I don't realize I'm spending at the time. It requires a ton of energy. And so is it any wonder that afterwards I'm wiped out? No. To a "Norm" that might sound ridiculously exaggerated but I assure you it is not. Visits ARE tiring even when you love the person dearly.

And there is one last thing about it too. GOOD stress is just as draining as bad stress. Adreniline pumping from excitement ends up making you feel like you've run head-first into a brick wall.

Epilog:

My brother's gone now and I'm very much missing him already. I'm also missing the rest of my family terribly, particularly the ones I haven't seen in years and those are some of my closest family, my kids and grandkids. Yes, this was indeed a very happy, yet at the same time very sad weekend. Contemplating my brother's visit caused me to contemplate what it would be like to be able to see the rest of my family. Those thoughts brought back in full force the reality of my condition and the consequences of my condition including financial ones. It caused me to recall a time past when visiting was never a problem. When you did things without thought - when you were able to do things without thought. When life was soooo much simpler and sooo much less complicated. When I was a "Norm" who would never have even thought one second about any of this. Well....not about most of it anyway.

I'm so glad he came. I'm happy. I'm sad...

Zona

O Give thanks unto the Lord for He is good and His mercies endure forever!

What Does It Matter?

2006-11-06T00:48:00.000-08:00

Being ill for so long with an illness that isolates you from the world, separates you from the mainstream and away from the hustle and bustles of what we call life can sure give one a different perspective of things.

Some may call it rebellion, I choose to call it having a better view! :) So many things have changed, yet many remain the same, just more exposed like freckles on an unpainted face. I suppose I've always seemed a bit 'different' to my friends. Perhaps that's because I walk to a different Drummer and His beat isn't quite the monotonous march like everyone else's but more a rhythm syncopated by the rhythm of a timeless day.

I suppose until one is yanked off of the assembly line you can't see how automated our lives have become. It's only when we can't do a thing anymore and get hassled about it that we just might stop and question the value of the thing to begin with! And so it is that I've been watching the world out there with a different pair of eyes.

I've been homeschooling my daughter. Strike one. Actually "unschooling" her. Strike two. I don't have a credit card. Strike three. Nor do I get up with the birds, or shop til I drop. I'm not impressed by initials after names. My, that must count at least a whole inning right there! But I don't care. :)

I've watched my kids get older and raise kids of their own. It seems like everyone is so busy these days working, working, working that no one has time to live anymore. And I can't help but question what kind of life is that?! I've seen some go way in debt to acquire a few initials only to work for the following twenty years to pay it back. What good is that? And before you know it we're all topped with gray and all that we've acquired is sucked away, too often due to the abuses on the old bod' from all those years of push, push, push, on medical bills and/or nursing homes...

I've come to view 'education' as the result of curiosity and need to know. I see occupation as something that usually only occupies the majority of your time but I think it should really be something you do to put food on the table, then end, or if you're very lucky, something you enjoy doing. At the very least it shouldn't take up all your time, unless you're an artist. (LOL)

We don't do 'normal things' in this household much anymore, or at least we don't do them in the normal ways. What does it matter really? To some people out there it seems to matter a lot. I know because they're sure let me know it! But really, what does it matter? If our days and nights are a bit skewed does it matter as long as we're getting enough sleep? If my daughter chooses to learn something she enjoys first and hopefully gets good enough at to feed herself with, what does it matter?
And if I don't define living in the same way you do does that make me wrong? After all doesn't this life belong to me? And just perhaps my reason for living, my purpose is not the same as yours.

Someone once refered to God's kingdom as the Upsidedown Kingdom for it seems upsidedown from the way the world opperates. The last are first. The least is the greatest. What the world sees as having no worth the Lord sees as having great value. The older I get, and just perhaps because of my CFS/FM/MCS glasses, that upsidedown kingdom looks more rightside up to me. So much depends on what your vantage point is--- Chronic illness can give one a heck of a view out above the mainstream!

So next time someone comes along and grills me about my daughter's schooling methods or our odd hours or wondering why I'm not panicked to have my clothes smelling like a fresh spring rain of an irish morn like theirs do (stinky is a better description of it)don't be surprised if you see me doing a little syncopated jig while singing "What does it matter?"

Well I've never been to heaven
But I've been in Oklahoma
Well, they tell me I was born there -------(not really)
But I really don't remember
In Oklahoma or Arizona
What does it matter
What does it matter

Zona

I'm Just a Lil' Yo Yo

2006-11-01T23:25:00.000-08:00

brrrrr it's gotten cold ! Last year i felt warm when it was this cold but not this year. I'm freezing!

still very busy here. FOund out my brother might be coming out to visit me in a couple weeks! EEEEK! not enough time to clean...not at my pace ! If he gets to come it will only be for two days. I haven't seen him in 10 yrs so i'm excited!

you know how it is when you're ill? I have mixed feelings about all this. On one hand i'm very excited and elated yet on the other thinking about him being here reminds me how ill i am. I know i won't be able to do much with him...which is an understatement because i spend most of my time on my bed these days and can't do that when trying to visit with him. It's not that he won't understand but more that ...you know how it is...subconsciously we're always trying to behave 'normally' when others are around and that often requires more energy etc than what we have ...esp me anyway.

I've been having weird head pain ... doesn't exactly seem like a headache but maybe is.... off and on for days which is driving me nuts. Think my neck might be tweaked along with my sinuses but not able to get into a chiropractor. I can only dream that that would help! The cold front is making both of us ache a lot. and the stomach/gut problems go on.

So today i don't know if i want to jump in jubilation or have a good cry....

Blogger's Slow Down - Typically CFS

2006-10-23T21:53:00.000-07:00

For weeks now I've been thinking about posting a blog here. As you can see it took me until today to do it! This is typically CFS. We start out with enthusiasum on new projects, something to take our mind off symptoms and boredom. It's so nice to have something to look forward to and there isn't much we have to look forward to while laying in a bed inside four walls. And so I thought blogging was IT. Something fun to do ---

But symptoms lag on and time seems to fly by like mollasses. [I'm still trying to figure out how time can seem to slip by like it does, not finding enough time to get things done I wish to do, yet at the end of the day seeming to have accomplished nothing! I think it's because it takes me ten times longer to do simple tasks.] Somehow all that mollasses seems to cause forgetfulness and damper whatever enthusiasum I had.

A few days ago my daughter announced to me that she lacked motivation. Not really unusual for a teen I suppose. She figured it should come in a bottle the same way happiness and calmness come in bottles prescribed to her friends. I had to inform her that they don't sell motivation anywhere and if they did I might just want to get a bottle of it myself! Ha!

...but I'm full of good intentions!

Knock Out Smell ?

2006-09-26T22:05:00.000-07:00

Well i didn't really think it was possible but today i've been even more flat out fatigued (as in weak exhausted from cfs) than i was yesterday. Didn't get that room finished... ah well another day...

...it could have been made worse by gum. Yup gum. My daughter was chewing some of the stinkiest gum... yuck and it caused a sore throat and felt it in my lungs. I think it was that same green apple smell that some shampoos have which also bother me... and dh. I sure wonder what chemical they use to make that smell because it sure is potent!

Smoke Cleared Now Why Won't My Brain?

2006-09-21T23:36:00.000-07:00

Stopping in just to tell you that the smoke is finally gone. Thank God! But it seems it took my brain and energy with it for I haven't had any in weeks (did I ever? no!).

I'm dreaming of all the things I had hoped to do this summer that I didn't do and wondering just how long it will be til winter. Wintertime here is a time where it is dreary for months. Many overcast days. Months worth! And the days get shorter and shorter until by Christmas the sky is dark around 4:30. It's hybernation time as far as my body's concerned. And so I'd better get some energy soon or I'll be sitting here with the same undone house, undealt with mess in the garage and piles of other undone things. I had so hoped to paint my bedroom when I could leave the window open and blow it out with the fan. Alas that isn't going to happen now. It's already getting too cool at night.

Ah well. I can dream?

Now this made me laugh !

2006-09-13T23:27:00.000-07:00

You Are 52% Healthy

Your diet is healthier than the average American diet - but that's not saying much!
You already know what's good for you. Just eat more of it.

How Healthy Is Your Diet?

Am I Disabled?

2006-09-13T00:51:00.000-07:00

I've been trying to figure out just how we can be two people at once. The reason being that it seems that we're expected to be two totally different people at the same time.

We're told that if we were really that ill we'd be going to the doctor's office much more often. The first thing out of most people's mouths the minute they ask "how are you doing?" and you give them an honest reply is "have you seen the doctor about that?", as if of course the doctor would have some magic bullet to fix you right up instantly. Of course we might be able to avoid those people. But for those who are receiving any kind of disability there is the perpetual mounds of documentation they're after as proof, despite the fact that you've already been diagnosed twenty some years ago and there is no cure nor any real treatment that works.

There's been more than one of us who've run smack into the royal guardians of disability benefit funds who seem to be paid by the number of people they deny, or dump off the rolls. They absolutely will not believe you're still ill, it seems, unless you've dashed to the doctor frequently and had yet one more test to prove it --- though in the case of CFS/ME, FM and MCS there really is no test. So it seems that it's repeated trips to doctor's and his notations on your chart they're after. And all this at a time when we're told the health care systems are overburdened?

On the other hand -- and here is where the need for split personality comes in ... How many times has it been implied to us that we're just hypochondriacs who whine about every little symptom we have? -that very list of symptoms upon which the diagnosis is based. How many trips to the doctor does it take once one is diagnosed to realize that there is really absolutely nothing that the doctor can do for us but take up his time? (and possibly get another one of 'those looks' for bothering him again about a weird symptom which he may have concluded is just lunacy? --which might indicate it's time for a new doctor by the way) We're looked upon as being mental if we run to the doctor too often. What is too often?

How can we be both at once? Because we sure seem to need to be!

But perhaps I have the supreme question of all yet to ask here. The question is, Am I disabled? Is one disabled if a doctor hasn't labeled you as such? And why would a doctor give you that label if there was no one to show that label to? In other words, if one has no disability benefits program to apply for there is no paper. And if there is no paper, are you disabled? (seems one needs a doctor's note to declare such before it's taken as fact)

I wonder about this sometimes when needing to explain to some new person why I can't do thus and so, ever. After twenty-six years of ongoing illness (I use the term illness with CFS/ME in mind because it is a chronic illness) , many of those day spent mostly in bed, barely being able to care for myself, I definitely haven't been able to work consistently enough nor enough hours to earn what anyone would consider a livelihood... and it seems it is by that measure that most define being disabled. Or is it rather that if you're not disabled or dying they think you should have a job and/or do something?

Honestly I've been real tempted... One of these days when someone starts the grilling I just may retort, "Oh! Well I'm independently wealthy, lazy, and just do what the heck I want to!"

Do you think they'd respond the same way?

:)

Is the CFIDS Assoc. just stressed or snoozing with the CDC?

2006-09-05T17:50:00.000-07:00

Recently the CDC came out with a new study that has been talked about quite a bit on most CFS/ME lists and groups. Many of us were urked, to put it mildly, because after misusing the monies tagged for CFS research and finally having to produce something that something turned out to be merely a study which, apparently, was done to prove someone's pet theory. Some have gone so far as to name who that someone is.

While CFS/ME did get some media attention the attention it got probably caused more bad than good as the message that went out implied that those of us with CFS can't handle stress. That's the very short version of it, and isn't it only the short version that people hear and remember?

If that weren't bad enough it seems that at least one large group that is supposed to be advocating on our behalf is now marching down that same rail - like a train on a dictated track. I admit I was a bit surprised to learn about this, but then not. After all the CFIDS Assoc. has been around for quite a while and supposably had a bit of political input yet what have we seen done in the past ten years?

A Hummingbird's Guide To M.E. (an excellent site by the way) has a good article by Jodi Bassett on this subject which is well worth your read.

Just try not to get too stressed about it all --- after all, stress just does us in. Right?

Zona

Twiddling Thumbs and Polka Dot Dreams

2006-09-01T20:44:00.000-07:00

I had intended to post here more often than I have been. But then I do have CFS. That means I'm full of good intentions but right down on zero energy.

I hesitate to post sometimes. After all, I ask myself who wants to read someone's whine? But then one of the reasons I started this blog to begin with so that others with CFS (FM and MCS) could see that they're not alone... or, if you're one of those who have unbelieving family or friends you could drag them in, point defiantly at the screen and pronounce: "See! I told you I'm not the only one!". And so it is that I'm writing here today. : )

This week has been the pits. Ok, ya, I did say that the last time I posted. I know. But it was the pits then too. Seems I've been choking on a lot of pits without the peaches lately. I can understand why Norms have a hard time understanding the fatigue we get. I can't even comprehend how anyone can be sooo very wiped out, weak, tired and still be breathing. How could I expect anyone else to know? Twenty-six years I've been ill now and each time I sink to this level of exhaustion I'm still stunned by it.

So what do I do when my eyes are too tired to stay focused properly? I can't read much. Can't work on art work. And then there's the numb, tingling hand and pain in arm that has stolen my ability to use the keyboard much. So even writing posts to my elists becomes difficult. What I do is play solitary, Spider Solitary to be exact.

Well, I thought I'd try to find another simple game to play, some word game as I do like word games. It frayed my mind. Loose nerve endings tangled up in knots and sizzled until steam arose. I quit and went back to my old familiar, repetitious solitary.

There's something comforting about solitary, all that repetitive, brainless placing card upon card over and over again. I recently heard that they've found that simple things such as opening jars with the opposite hand you normally use is good for Alzheimer's patients. Something about the brain, probably patterning and forcing a different area than normally used to do the same function.

So I've decided that playing solitary is good for my brain. It's relaxing. It requires little energy and maybe, just maybe by playing it over and over again I'm rewiring my head ?

the god of health

2006-08-23T13:42:00.000-07:00

I listened to an interesting radio show today where they guy talked about how we worship the god of health. He made several interesting points, talking about how what they are doing today reminded him of old U.S.S.R techniques. The zealots today are erasing cigarettes from all images, including famous photos and cartoons. Now he wasn't pro smoking by any means. That wasn't his point. The point had more to do with how we're being indoctrinated. How easy it is to move people in whatever direction you wish them to go using these techniques. And he's right.

As I listened I couldn't help but see how this relates to those of us who have invisible illnesses. Yes, indeed. Our society does worship a god of health, that god not to be confused with our God who is The Healer and the God of Life. There's a huge difference!

This cultural god of health causes us to view health as something to be worshipped and coveted. It causes us to point fingers at those who are overweight, still smoke, don't jog, and worse, to somehow assume that someone is to blame for any health problem, often their parents be it due to environment and habits or genes or the sick person himself. Those who worship the god of health believe that it is for the good of all society that those with 'defective genes' don't have babies, even when it's after the fact (after conception). We call it 'irresponsible' or 'a tragedy (that could have been avoided)'. They also believe that it is compassionate to shorten the life of someone who's health brings troubles...

We all sure wish to be totally healthy. And those of us who have MCS surely know how important it is that our environment be free from toxic chemicals and pollution. I'm not arguing that at all! [that is a subject for another post]. What I'd like you to ponder for a moment is how this focus on health, from jogging to dieting, gene manipulation to 'magic bullets', has caused us to be a society that almost views sickness as a choice. Some even go so far as to believe that it all begins in your head - what you think/ believe causes your body to be ill. Mind over body stuff. It's surprising how far that has crept into every day thinking be it ever so subtly that even we, ourselves, have been duped at times.

None of this is to negate personal responsibility for practical care for you body. Eatting nutritiously, exercising if/when possible, sleeping enough etc. Certainly we need to do that. From a Christian standpoint that relates to taking care of the temple of the Holy Spirit, our bodies, which we should do. The main focus for Christians, however, is on the Lord. Health is a blessing. Sickness is the bi-product of living in a fallen world. [a bit simplified but...]

The connection is how our views on health have been warped by subtle brain feeding. We adore Adonis and loathe The Hunchback of Notre Dame. It's about how we can go so far as to rewrite history by airbrushing the cigar from Churchill's hand and some old cartoon while at the same time shrug off alcohol, behavior that leads to STD's or over indulging in pizza, coke and eclairs. It's about looking back and watching the grand march down this anti-smoking campaign path and seeing not only how quickly and entirely we were convinced but to what extents we will go to remove it from human history. Question is what else did they cause us to believe along the way?

Once upon a time the weak and frail, the disabled and those who were ill were seen through compassionate eyes and with a soul that said "there but by the grace of God go I". We didn't see health solely as something one deserved or wasn't worthy of. We didn't point fingers at someone who got Scarlet Fever or Spanish Flu. We had compassion for them and felt it was community's virtue to assist them in any way we could. We didn't look at them in disgust and loathing. We surely didn't believe they brought it on themselves somehow nor 'thought themselves unwell'.

It seems that today unless one can identify a particular germ as culprit these new illnesses don't exist -----

or worse--- somehow you just want to be ill....

There's Always Tomorrow?

2006-08-16T20:18:00.000-07:00

I can't even begin to tell you how awful I've been feeling this week. Too tired to even see straight and that's no overstatement! We got my daughter sent off to camp for the week and here I thought it would be a terrific time to do some things while we were alone. Right.

It seems that in all the 'getting her together' for camp mom got all un-together and been three days now of recuperating from that packing etc. Not another thing done. Not one. Ok. Yes. I did do dishes a few times, but they looked blurry.

I heard myself say "oh well, I'll do it tomorrow". Somehow when you're younger it's a bit easier to think of loads of tomorrows ahead of us. After 26 yrs of illness and being, ah hmmm, over the hill (ok no, I don't think I am but my kids do?) it gets a bit harder to believe that there is this day called "One Day".

It occured to me that each day I wake up (or, like today get woken up waaay too early!) and before I blink twice I'm thinking of what all hasn't been done that I need to do. Believe me that is a very long list! Of course by afternoon I note I hadn't gotten but maybe one small chore on that list done and I'm already wiped out. "Later, after I rest a bit" I say to myself. Then later I'm assessing what I did and groaning that the list of "need to do's" is still just as long as it was when I woke up! Today I realized that I do this every day without thinking about it. No wonder I feel like the day was wasted!

So today I decided it was time for a new course of action. A new treatment, if you will. Ah yes. That is what I need. A plan! So here's my objective. As a friend recently said we need something to look forward to. What I'd been looking forward at was piles of chores to be done. Yuck! Nope. No more! As to tomorrow I'm going to think up one ENJOYABLE thing to do and look forward to doing it. One thing a day no matter how small. I do enjoy a few small things now, talking to husband, playing solitary on the computer to relax---but I don't look forward to them, I just do them. Tomorrow I'm going to think of something I CAN do and DO it !

Perhaps maybe yet this summer I will get to go on that short ride in the car. Maybe I'll get over to the store I've been wanting to get to for three months now. Just maybe I'll win the lotto too and then I can completely tear up that chore list if I wanted to! I'll hire the Brady's maid and Mr. Bellvedere! Oh and Godfrey, as in My Man ! And Mr. Clean, and the Tidy Bowl Man, and Frank Bunker Gilbreth, Welby, Kildare, House, Who, Wisenheimer,Hawkeye & Trapper John, Hullihan, & McCoy ! I'll hire Boy R D, Julia Childs, Chef!, and Cary Grant---

--hey! How did he get in there?? ...

Zzzz ZZzzzzzz Zz

A Few Little Numbers Might Help

2006-08-09T01:05:00.000-07:00

What a difference a few numbers might make. Just the right numbers. I don't need too many. Just enough and just the correct ones that match the winning lotto numbers will do.

Recent research pointed to stressors being a very bad thing for PWC's (people with CFS). Now we know they were referring to physical stress as much as to mental/emotional stress - such things as virii and infections, car accidents and such but hey, ok, I won't argue, emotional stress wrecks us too.

Now what I'd like to know is how one can not be stressed when they have an illness that prevents you from earning an income, and if one is so fortunate to recieve some sort of disability benefit never is enough even to maintain the basic necessities let alone all the extra medicimal stuff that one needs to perhaps feel better if not flat out survive? ! (ps I don't get disability benefits of any kind)

Money is a constant worry. Not having enough, that is. Forget the special diets, heating pads, chiropractors or physical therapists, suppliments, comfy beds, proper clothing, fragrance free cleaners, and whatever else one might require. Somedays food and lights are difficult enough to afford.

I could write a book on this subject alone. But for now, I just mention it here as something 'norms' should ponder ... Being ill is not cheap.

One winning lotto ticket might not cure me but it sure couldn't hurt me either. Care to buy me one?

In The Good Ol' Summertime

2006-07-31T22:15:00.000-07:00

I know many CFS/FM folks say they feel much better in the summer. Not me. Not in recent years. I don't know if it's the heat intolerance or the pollens or the air pollution. Whatever it is my body doesn't like it much. And yet I don't exactly like winter either. Winter's just really not that pretty---well, okay, when the trees are all laced with frost maybe it is.

(and nope, I didn't forget it could be from MCS too)

A week ago we had neighbor's asphalting driveway and a stinky teen times two and something else I've now forgotten, any and all of which could have thrown me into these weird symptoms. For days my legs were like lead and weak--how can they feel like both at the same time?? --and tingling intensely. The tingling isn't new for me at all. In fact it was one of the first symptoms I had 26 yrs ago. But the intensity, weak-lead legs and duration were.

Tip- [I have no clue if any of these made one wit of difference of if one of them were the reason the problem had subsided a lot the next morning]

I had my husband adjust my hip sort of like my old myopractor used to do
Had him tug on my legs like myopractor used to do
I laid with heating pad under low back for a while

---or it may just have been a reaction that finally wore off... or a shift in the direction of the breeze...or that old Fairy Fluke that seems to wave her wand and rotate symptoms faster than a Nascar pit crew rotates tires.

I got up the next morning minus the intense tingling, able to stand for thirty seconds without my legs feeling they'd go out from under me. However--- the old rumbling, girgling gut thingie complete with bubbling feeling in chest had taken it's place! ARGH!

Sometimes it seems like there's a very mean old crone out there somewhere with a lot of very looong pins and a doll fashioned to look like me, else a renegade virus with a very baaad sense of humor!

Did I tell you it was a pretty trying week?

Time to play Literati with my sister. That's one sanity saver ....

It's Hot !

2006-07-23T18:56:00.000-07:00

A whole week has past since I posted last during which time I had a neighbor asphalting their driveway, kids show up stinking, other annoyances and a not so fun time with teenager. And it is hot!

Today the thermometer on the back porch said 104F. No igloos here I assure you. I melt down when it goes over 84. Been a little puddle here in the only room of the house that has a/c, my bedroom. The rest of the house is uninhabitable, therefore the housework is piling up. Daughter dear is inhabiting the rest of the house though I sure can't see how! (and yes, I did invite her to hibernate in here with me).

For days now I've had a terrible headache, not typical for me, especially not this type of headache. Who knows if it's the asphalt, the heat, stress or dumb ol' CFS/MCS/FMS. I'm too wiped to care to figure it out. But then it could also be a resurgance of the crud I had a week ago as the earaches, sore throat etc are back too and my friend told me that is what would happen. Her family had it the week before I came down with it...

I had wanted to post something else but for now this is what I did...LOL Just too tuckered..

Fumed ?

2006-07-14T20:30:00.000-07:00

I had planned on writing something uplifting and cheery next time I posted. Well, it ain't going to happen. I guess it's just been one of those months. Between the bad fall, and 'bugs' and now ... well... the air ... I guess on a positive note I could claim I'm still alive?

It began with an unexpected visit from a stinky teen. I hibernated in my room after exiling him to the backyard with my daughter but the smell had made it's home in my living room by then despite the fans and air purifier.

The next day I was standing out on my back porch when the wind kicked up and suddenly my legs started to tingle, which used to mean pesticide exposure but these days seems to come from a variety of things I think. Who knew what this time?

Then yesterday my neighbor asphalted his driveway which goes all along my side yard. I knew this was going to happen but had hoped for a pre-warning so I could again hibernate in my bedroom. For some reason the smell wasn't as strong as when they did the road nearby a few years ago--- but then the other road is all dug up and about to be repaved too sometime soon. argh.

I woke up feeling horrid and felt short winded all day. Sometimes CFS can cause that but this time it seemed more linked to the ongoing bloating from a few days ago, most likely compounded by the exposures. Usually if I wake up that way it will go away in a short while. Not today. Today it has been all day along with crushing fatigue and weariness...

Then I picked up the newspaper and read the headlines: "Acid spill alarms city". Turns out the waste treatment plant a half block upwind away that we've long suspected to be a source of air problems here reported a high amount of phosphorus in the water. It was high enough to suspect a spill though the culprit has not been found.

I looked at the date this happened and wondered if it was the explanation for my tingling legs and other things these last few days?

Fun and games on the home range...

My uplifting blog will have to wait until another day!

Life Happens

2006-07-10T18:13:00.000-07:00

I had to procrastinate posting here as both dh and I have had some 'bug' going around...still do it seems. So I'm late here with the news...

I'm a grandma! (again) My grand-daughter was born July 6th, the same day as another grand-daughter of mine. How about that?! Of course this blessed event is exciting...but yet too a bit brought a bit of sadness too, as my kids live so far away from me I haven't been able to see them for a long time including the last baby who is now 5 yrs old already. I'm wondering how old this one might be by the time I get to see her too?

I have the unusual situation of having a grand-daughter (the oldest one) who is just three years younger than my youngest child. Did you follow that? My youngest, now a teenager has been like an only child with the number of years between her and the next oldest. Back when I first started getting these grand-children we did all live in the same town and often I found myself with six kids all under the age of 6 in my home, typically three of them still in diapers!

Obviously with CFS, FM and MCS even one young child was enough to manage. Can you imagine six?! Even though I lived close by I found it difficult to play grandma and mom at the same time and eventually had to ask my kids to not deposit them at the same time. Now I'm days away and can't see them at all except via the net. Thank God for the internet and webcams etc. !

So today I sit here both filled with joy and a bit of sadness. Events like this too often brings it home just how much being ill affects our lives in soooo many ways.

Sunnydale Funny Farm - Open to visitors !

2006-07-02T01:30:00.000-07:00

Announcing the opening of Sunnydale Funny Farm, home of the looniest bunch you'll ever met! Come hear the latest antics of the patients on Ward A, Ward B, C, D... well you get the drift. Under the oversight of the renouned Dr. Wolfgang Wisenheimer himself (on the right with Quackers the Duck) our Head Shrink and Chief of Staff.

Come over and see what's happening with this wackie gang. Perhaps one of the therapy sessions will help you too? You never know ya know.

I can tell you that it really helped me. I found the underwater basketweaving therapy to be one of the best around. There's nothing like a little weaving to unwind your day. I will confess that Quackers is my favorite, though he doesn't talk. Kind of like the old proverbial invisible friend.

You'll find the link over there ----> on the right under Links or just go to http://sunnydalefunnyfarm.blogspot.com from here : )

Cheers!
Zona

Dr. Wisenheimer's Confident Goes Down For The Count?

2006-06-25T21:55:00.000-07:00

Heat and I do not get along very well. It seems as the thermometer goes up I go down. I ache bad head to toe, feel totally wiped out, drained. Did I tell you I don't like heat?

So what do you do when you're still hurting from a bad fall and then aching from heat on top of it? That's what I've been trying to figure out all week. To make matters worse my normal nightly distraction has been missing too. Most every night I play Litreati online (yahoo) with my sister---but her pc bit the dust this week which has left me sitting here bored out of my head. But that's nothing too new...

[Just now, in a hair-brained moment...ok well maybe it was a CFS moment? ...I took a swig of coke which tasted funny and realized it was my husband's cherry cola which doesn't quite agree with me - or so I discovered when I got an instant headache and swelling lower lip! (I've yet to figure out just what it is that sometimes causes my lower lip to feel like it's swelling and feels funny when I try to talk. I've suspected things like a coffee cup that was too hot but never have been able to coorelate it to any one particular thing!) So here I sit/lay blitzed out. But I digress---]

What I did to break the boredom, since I'm not quite with it enough to do anything really productive, is to create the cartoon above to illustrate just how I've been feeling. I thought it just might entertain you a bit and make this blog a bit more endurable! Ha!

Now if only I felt as good as Sigfreid up there.... !

Nightcrawlers

2006-06-20T18:50:00.000-07:00

Am I the only one out there who's days and nights are flipped? Don't think so. From what I've heard from other PWC's this is a typical problem. Are you one of them? Our body clocks are wound wrong it seems. My sister-inlaw works in a sleep clinic and tells me FMS tales... :) Seems the old alpha intrusion problem strikes particularly hard sometimes...

Zona ---" Zzz Zzzzzz z zZ Zzzzz "

I'm the expert

2006-06-18T01:46:00.000-07:00

I was sitting here feeling rather blue because it's been a week since I fell, I'm in pain and very, very, tired and watching piles get higher and higher in the house. The laundry is piling up too. It dawned on me that it is as if I expect "Them" to arrive. You know "Them" - the 'Others' out there who would make judgements about me based on some assumed rules of proper standards and conduct of living ?

Then I realized how down I am and that made me recall all the comments I've heard Them say over the years that are meant to prod you out of this state. "Stop whining." "Stop feeling sorry for yourself." "Don't think about the bad things." "Suck it up!" Of course these generally aren't said to the person who's feeling that way now, but rather in converstations when talking about someone else that reveal what They really think.

And there are piles of articles out there about how being blue is a bad thing, something that requires counseling or pills or something because we all should always be in a state of perpetual happiness, or that's how it seems sometimes. I've heard and watched many fellow pwdds (people with dumb diseases, as we call these) put on fake smiles because they're tired of being told that they're only depressed, not sick, so they dare not let one when they're blue. In addition Everyone knows that whining is a terrible thing to do, you have to keep a stiff upper lip and show bravado. We have a real problem with weakness in our society. Is it any wonder that there would be such negative reaction to an illness that screams "you're so weak!" ?

Why is it that Everyone is an expert? Do you really know everything from reading a book? A book that someone else wrote based on what they heard or read that someone else said? Ya, I've been contemplating this whole 'expert' thing lately. Seems somehow we've come to view alphabets listed behind names as 'all knowing ones'. I don't begrudge acknowledging that someone may have sat through a few more lectures or read a few more books or even sat and pondered or wrote a few more papers, but I have come to realize that that doesn't necessarily mean anything much. Having an illness/s that little is known about or understood has a way of causing you to observe that there are many other things in life that are equally not really understood, yet we see doctors and researchers, hear friends and family and talk show hosts all talking as if they know more than we do.

Today I'm declaring I'M the EXPERT !

No one knows my body better than me. No one knows what's in my head or how it works better than I do. Know one knows what I need. No one knows exactly how much sleep I need, what foods I need, what lifts me up or brings me down. I AM the expert on me! And you know, I am unique! (and proud of it!).

Mind you I appreciate it when my husband makes his best guess about what I want, and when a friend attempts to hit the bullseye for something that will sooth me. I'm sure not saying we shouldn't try to understand one another, far from it. What I am saying is that I think it is high time that we all realize that there is no standard mold that we all popped out of nor is there really as great of need to be Bobsie Twins as we've been lead to believe (and coerced to become). While it is desireable to have expected standards of behavior when interacting with one another, within family and community so that we don't have chaos and lawlessness, somehow we've gotten it all mixed it up. God's commandments are absolutes, right versus wrong, yet those we shrug off and call gray areas. Meanwhile things that are not detramental we treat as if they are absolute rules we must abide by. For instance we must all be up in the morning and go to bed by such and such an hour at night. Funny how that is, huh?

I'm the expert on Me. There is only One other who is more expert than I, and I consult with Him regularly. That helps because He actually knows me between than I do and He's also the expert on you - and sometimes clues me in about things I have only best guesses about. The rest of the so-called experts out there.... well... I'll weigh their opinion against my own observations. Sometimes I might glean a few things, most of it I toss out with the trash.

On the news last night I did hear about some "expert's" study that did coincide with my expert observations. They were just slow in discovering what I've known for years (ok, I admit I started paying attention to this due to a comment my Uncle made to me years ago). The report was about the connection between injured immune systems and white-glove cleanliness re: anti-septic homes. It seems that all this cleanliness has lead to weakened immune systems, particularly in children. See? Not only isn't it necessary to be pile-less but it may actually healthier to have a few dishes in that sink overnight!

I knew it !

Sick with Kidz??

2006-06-14T18:49:00.000-07:00

For years I talked with others who also have CFS, FMS and/or MCS about the ramifications on our kids. There are so many ways that they are affect right along with us. When we are homebound they can become a bit homebound too, as things like transporting them tend to be a problem. Here's a short list on some of the things I've found or heard or thought about:

1. Kids can be afraid that their sick parent may die. (something they rarely confess until they're grown up).
2. Their friends and friends' parents might tag us as 'lazy' or 'crazy' or 'neglectful', or worse, maybe even 'abusive' and our kids may take those labels as family labels that reject them too.
3. Financial difficulties - Often our kids can't be in many things because of the expense. Being ill doesn't come cheap! Loss of wages plus additional expenses strains most budgets to the max. Extras for the kids are often 'out'. Forget Little League, after school events etc.
4. If our kids start having symptoms themselves and we haul them into a Dr too often the Drs assume we're just projecting our illness onto our kids.
5. The kids may fear they will become ill too.
6. Sick parents can not predict, can not commit in advance, can't promise to be somewhere, do something etc. Some sick parents never see Little Suzie's Christmas programs or Joshua hitting that homerun. Birthday parties?? How?!

These are just a few examples of ways our kids are affected. These don't even scratch the surface of things we run into daily. What do you do with behaviour problems when you can barely sit up for five minutes? What happens when Katie starts sleeping on your sleep cycle?

I have set up a Christian e-list for parents who have CFS, FMS, MCS (or any chronic debilitating illness) who would like to share tips, chat, vent, compare notes and encourage one another. If you're one of those parents or know one go to:

Christian MCS-EI w/Kidz http://groups.yahoo.com/group/CMCS-wkidz/ and join us !

We'd love to have you : )

Zona

Singin' the flat down blues

2006-06-11T22:18:00.000-07:00

It's weeks like these when I wonder how many ways are there to count spots on the ceiling. Like a clutzy ballerina gliding on a banana peel during an earthquake I felt the floor slide under my feet as my body tipped backwards meeting the floor squarely on my backside with a thundering thud. I knew right then this was not going to make for a very good week. I was doubly sure when I needed help getting up off the floor.

The rest of the week has been mostly spent trying to perch on the bed without mattress coming into contact with much injured tailbone-back. I had no idea how many muscles are used in coughing and sneezing. Yes sir re, your talebone is definately engaged in doing those things. Forget manuvering from a laying to standing position. I also discovered how many things it is possible to pick up off of the floor with your toes. Bending just won't do!

Days before this happened I started experiencing a bit of stomach upset complete with nausea. Slapping backside into floor does not help stomach. I decided to try suffering in silence - ya right! - well sort of silence anyway. I mean just how much and how often can one sob and whine anyway? The real problem though was what to do with myself during this down time. Everything hurts.

I got the bright idea that I'd think of some more ideas for a couple cute comics. Somehow my creative humor evacuated as the black and blue appeared. My husband suggested I'd injured my 'thinker' as he always suspected. Ha. I pondered drawing a toon of him with a black eye. I guess being creative will just have to wait until another day.

So what do you do when you can't do anything? Can't even sit at computer. Heck can't even lay at computer - laying hurts! Turn on the tv and pray some grand oldie is on, you know that type that you can watch over and over and never get tired of it. Nadder with husband. Watch the cat find weird positions to sleep in on the bed. Dream. Ya that's the ticket. I'll be a director of some terrific script I write in my head as I go and pretend I'm Howard Hawks ! Lights! Camera! Action!

...only in MY film I'm going to make sure I have a body double to take the spills!

2006-06-03T20:54:00.000-07:00

World premiere of the very first Zona's Zone Toonz!

**Check back for more in upcoming days! :) I need to know I'm terrifically lovely, cute and wonderful... well anyway I would love to hear your comments so please leave them below.

Zona

Do I need a Doctor's Note here??

2006-05-31T12:42:00.000-07:00

I wish I could say that I've been absent for a bit because I've been so busy having fun in the sun, taking a trip to those magestic Rocky Mountains that I used to call home, or planting a beautiful flower garden but alas that's not why I've been gone... I'm sure you could guess in one guess what I've actually been doing?

I woke up one morning a while ago and found the path to the kitchen was a verrrry long distance, even further than it is on most days. Assuming it would lift a bit later on I poured myself a cup of coffee (decaf- doesn't exactly get you going but I can't handle caffeine much at all!) while propping myself against the countertop to stay upright. I'm still can't figure out how your legs can feel both like jello and lead at the same time. As I shuffled back to the bed thinking about calling a friend I thought, 'how on earth can I describe the difference between how I'm feeling today and most other days? It's the same, sort of, yet oh so much more intense.'

Three days later and still moving slower than a snail on Valium I assumed I was in a major crash. I ached all over. My eyelids were puffy, something that is a telltale sign that I'm not doing well. By the fourth day of same I was beginning to wonder if I'd ever see the living room again.

After throat got sore and ears started aching I started wondering. Then a friend called. She's one of those work til you drop sorts that will go to work when she's sick as a dog and is proud of it. Turned out her whole family had been home sick all week with, guess what? the exact same symptoms I had! I went "oh doh me!". Who can tell the difference between being ill with CFS and 'regular junk' ??!! Maybe the earache and headache should have tipped me off ? but then I have allergies and MCS too...

I took the opportunity to point out to her how those of us who have CFS are ALWAYS pushing ourselves. We get up and throw the dishes in the dishwasher when we can barely stand. Yes, it may not seem to others like we are accomplishing much, but hey, if they resided in our bodies and realized just how difficult loading that dishwasher was, how much effort it took and the fallout afterwards perhaps they'd understand a bit more. Meanwhile I had a lesson to learn from Miss Superwoman too. SHE went to bed guilt free when she couldn't stand up. We might be laying but we're seldom feeling okay about it.

I wrote in the blog titled "Who's in charge here anyway" how I'd read about a guy whose CFS improved and how he learned that rest was a requirement of healing. Specifically I learned about viewing resting as something I need like a diabetic needs insulin and not just think of it as something you do when you have to (which is indeed much of the time), or what you do after you start collapsing. I think I need to reread that again! Apparantly I haven't taken my own advice very well...

[I thot I was finally over 'the bug' but today I'm not quite so sure. I don't feel quite so weak but my head, sinuses? ... well... my whole body is still in the dumpers.]

I doubt I'll ever be able to discern when I have "a bug" from when I'm having a crash..

Ps 127:2 In vain you rise early and stay up late, toiling for food to eat--

for he grants sleep to those he loves.

Two Eyed Purple People Eater

2006-05-16T02:31:00.000-07:00

I'm surprised to see that it's been a while since I posted a blog here, but then again I guess I shouldn't be. I've spent the last several days in a brain-blitzed fog with keel-over, jelly-kneed, weakness type fatigue to go with it not to mention the assorted other lovely symptoms like tingling, pain, sinus, and the feeling of wearing sox when I'm not wearing sox at all.

I've had moments when I found myself falling asleep in the middle of the day which is totally untypical for me despite my usual fatigue. It's not the these symptoms were unfamiliar but rather the intensity, duration and combination of them which told me something was different.

Like many other times like this I started going through the mental check off list---Is there flu going around? Is this like other (cfs) crashes I've had? Have I eaten anything new-different? Have I been around anything different? Having CFS and MCS and FM it's often difficult to sort out what causes what.

You might think it doesn't make any difference what the cause is, but to me it does because SOME things I've learned little tips and tricks to do that help, and I sure want to know if it's something I can avoid or need to get away from!

Then I recalled a succession of things that happened several nights back. I'd gone to ask my neighbor something and when she answered her door I was greeting by a mushroom cloud of fumes! She doesn't apply perfume inside her suite but of course no matter where she's put it on it's in her clothes, hair etc and therefore weasels its way into her apartment where it can come up my air vents.

I hadn't run into that strong of 'fumes on her before (tho ya she's been a stinker sometimes) and so wasn't expecting it. I backed up the stairwell a few steps thinking I could complete my mission and after a few moments no longer noticed the smell ---but---suddenly I noticed the sound of my voice was changing! Kermit had appeared! I started sounding froggier and froggier until I was sure I was croaking. Sure enough I started feeling that horrid, scary feeling of throat tightening. Then I was coughing...

Oddly I hadn't had this happen for a long time. Years ago I had had several episodes when exposed to perfume which sent me rushing to the Dr. who gave me a cortisone shot. I was becoming convinced recently that my reactions had changed over the years as my "early warning alarm" seemed to have disappeared. Back in those early days when exposed to perfumes I would first get a very sore throat, like I'd drank acid. That would tell me to EXIT FAST! If I lingered too long or if the 'fumes were especially strong the swelling throat would follow. Several weeks ago it had occurred to me that I hadn't had that for a long time but wondered if I hadn't developed a more delayed reaction of a different nature.

I made the great escape from the stinky stairwell and tried to 'air out' a bit praying the tightening wouldn't progress. Sometimes that helps if I move fast enough. After a short 'airing out' on the back porch I decided I felt as good as I was going to for a while and went into the house.

About an hour later I went outside again, only this time I was slammed by air thick with someone's laundry soaps! Laundry smells often drift through the air but wouldn't you know, that night it was ten times thicker than usual. Yucko! I shake my head in amazement wondering how come people really believe that super-stinky laundry is somehow cleaner than laundry with no smell. There must be a bunch of them convinced of that as they all seem to use the most awfully stinky stuff out there. It's not a pleasant smell, more like one that sticks a bony sharp finger up your nose and twists. Phooey! Needless to say I quickly turned back into the house.

Now I'm really not a glutton for punishment but perhaps more a creature of habit. I often go out and sit on my back porch for a few minutes throughout the day. The house can get to feeling rather stuffy. So a while later I ventured towards the back door again. I barely had it cracked when I noticed yet another horrible smell - burning plastic!

I'm really not paranoid but the fact is that plastics are NOT a good thing for people with MCS to be around much less molten, burning plastic! Shudder! It made me recall burning electrical wires I once had the misfortune to experience which quickly made me holler for husband to come take a whiff. Why is it that when we think we smell something that we know will cause us trouble that we always seem to require a second whiff to make sure?! ???

Husband came out, took one whiff (he has MCS too but doesn't react to as many things as I do - but enough he shouldn't be whiffing anything toxic and neither should any other sane human being!) and pronounced "burning styrofoam". YUCK! Did you know that two people can not squeeze through one screendoor opening at the same time?

And so it was earlier tonight that I recalled that night of stink and wondered if perhaps that is what lead to these days and days of dysfunction. Problem is that at this type I can't recall if I was already feeling so dysfunctional before that stinky night or when it all kicked up. Argh. Some detective I am huh? ---but I figured it was possible...

...or perhaps it is 'a bug'?? I was feeling a tad warm earlier today, feverish without a real fever and my daughter's friend who was here a bit over a weekago came down with the flu the day after...

...or maybe someone had sprayed a lawn???

...or maybe it's some combination of junk ??

Then the front door opened and in walked my teenager after a weekend of overnights with a friend. She promptly pranced into my bedroom to show me her freshly done "pink" hair which was more a shade of pink-magenta! It seems the friend she'd gone with earlier tonight has aspirations of being a great hairdresser and figured this was the perfect color for daughter dear.

Well--- it didn't look to bad on her---not the sort of color one would assume one was born with--or that elderly ladies might approve of--- but it reeked! --- or perhaps it was the smathering of hair wax the friend had used to make it ruffly looking?? ---or the hairspray they'd added as the final 'fix' ??? ...

Regardless, all I know is that I've been done in by my two-eyed purple people eater! ...or perhaps more accurately I should say "finished off". Yuppers I'm now totally done in, as if the last few days crash hadn't been enough.

So from the confines of my closed off bedroom I bid you goodnite.

...wonder how many days it will take for the smell to wear off her hair?? I did turn the hepa on full blast, opened up all the windows and turn a fan didn't I ???? ....

...have to make a note to self to have husband take a whiff and see if the air is clear in the morning...

Me and My Shadow

2006-05-03T00:04:00.000-07:00

Many years back I applied for SS disability. I didn't have insurance when I became ill so after the first several years of many visits to the doctor I only went periodically. I had a diagnosis of 'pesticide poisoning' the first year but it was another 9 yrs before I was told I also had CEBV (later called CFS). In those early years I doubt any doctor knew the names for what I had. Incline Village wasn't to hit the news until several years later. No doctor doubted I was very ill. They just didn't know what to think of my symptoms. Once I had the CEBV diagnosis I applied for SSI. SS sent me to their medical doctor. He took my pulse, listened to my heart and lungs and sent me out the door. A while later I got a letter telling me to see a psychologist.

Now I had the suspicion that if I told this psychologist that I had 'environmental illness' he'd be sure to think I was nuts. I knew I wasn't nuts but I wasn't planning on mentioning EI to him. Instead I focused on CEBV and 'allergies'. I also wasn't planning on mentioning the pesticide poisoning for I'd learned long before that was a topic that was sure to win you the raised eyebrow of disbelief.

The doctor asked me a series of questions which I answered honestly. Finally he asked "Are you depressed?" I paused for a moment then said "Well, let's see. I can't do much with my kids these days. I can't attend their performances at school. I can't take them out to do physical things. I can't work, therefore I deal with constant money worries. I can't plan ahead because I never know how I'll feel hour to hour. I can't do many of the things I used to do but most of my old friends and even some family members have a hard time understanding that." My litany to him was a bit longer than this list... and then I said "Hmmm--- yup, I guess you could say I'm depressed" and watched him carefully figuring I just earned myself a diagnosis of depression (which by the way is not something I wanted... little did I know at the time that it is easier to get disability due to depression than it is based on CFS, at least at that time.).

He looked at me and retorted, "You're not depressed... You have circumstances that would make anyone depressed!".

Oh how right he was ! (He also told me he was going to recommend that I get disability but for some reason the SS office thought differently). Then he told me the reason he'd asked me those questions is because the SS M.D. had diagnosed me as depressed- based on my pulse, lung sound etc of course! Later he and I did end up having a discussion about pesticide poisoning and all my sensitivities to chemicals that resulted in. Seemed he perfectly understood because he had equally bad reactions to bee stings!. I asked him to tell me I was certifiable (sane) so I could officially make that claim : )

Why was I afraid of being thought of as nuts? And why didn't I want to be tagged as depressed? There are two reasons. If I took a survey of all my fellow pwc's, pwfm's and pwmcs's (read "people with---") and asked them what the most difficult thing they have to deal with aside from the symptoms at least 99% of them would say "the stress of having to explain and re-explain and explain again to others that I have a real physical illness that requires me to do certain things. Most don't understand, are misinformed, jump to wrong conclusions or worse---they doubt me and assume I'm faking it." I could write a whole blog on this and someday I will!

The second reason is very simple. The things I need to do to avoid having 'crashes', 'reactions' and getting progressively worse are not the same things one would need to do if the cause was depression or mental illness. More to the point, being pushed into doing those things most often recommended by the all-knowing-misinformed know-it-alls typically would be detrimental to my physical well-being. Things like "Oh you just need to exercise more!" and "You need to get out more often!". "You just need to take thus and so and force yourself to do things.." "You think about your symptoms too much" -- blah blah. Little do they realize that many of those things they suggest might kill me (some reactions can be life threatening). Worse still is if it is your doctor who has this opinion - 'its all in your head'- even when they won't come right out and tell you so. Having to put up with these people can be very stressful and take up a whole lot of the little energy we have... and can actually make us sicker.

Undoubtably anyone who has any of these chronic invisible illnesses get depressed. Who wouldn't? They totally disassemble your old lifestyle and like Humpty Dumpty you're left to pick up the pieces and reassemble them again, but what you end up with is but a warped reflection of what it once was. Life is never the same. Your definition of what is living changes too. Sometimes Humpty Dumpty now looks more like green eggs and ham. Mind you that is mostly from the mirror's view.

While we do change on the inside too (especially over time) it is mostly what our lifestyle looks like to others that is most obviously drastically changed. We're in bed a lot. We don't care so much about make-up and fashion. We now go for comfort over beauty. We become recluse instead of outgoing. We avoid Wallyworld... (for some reason Wallyworld is one store that makes many of us feel sick/react, perhaps the lighting and sensory overload caused). Our bank accounts dwindle with no new funds coming in and the things that might help us feel a bit better remain on the shelves unpurchased.

What many people don't realize is that we operate in survival mode. Day in and day out we are dealing with symptoms that are hard to just ignored, difficult if not outright impossible to distract ourselves from, though we try very hard. It's not like having an sprained ankle that you just stay off of for a while or a cold you can keep working through. Brainfog makes it impossible to think straight like living with a head stuffed full of molting cotton balls. You can't occupy your mind with crossword puzzles when your mind won't focus. You can't read books when you're so exhausted fatigued that your eyes won't focus let alone won't track down line to line and hope you can remember what was in the previous paragraph. And survival mode dictates that you don't think much or often about those things that are depressing. Perhaps in that area more than anything else we can be the world's biggest fakes. Survival requires hope. It requires lots of humor, laughter and distractions. The best prescription for survival is found in Philipians 4:8 :

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.

It's best not to dwell too long on the problems and losses or on all the judgements of others heaped on our heads. To do that would be to bury yourself in a pile of dung you can't crawl out from under. Survival mode.

Yesterday my coping sheild failed me for a while. I saw a picture of a rustic restaurant in the mountains that reminded me of one I'd been to in Idlewild, California many,many years ago. For a moment I recalled the smell of fresh pine trees after a shower, remembered the crispness of clean mountain air of Colorado and oh so many places I've been in my lifetime. I'm a mountain country girl at heart and detest city life, which is where I live now. For a while I felt heavy grief and my soul yearned to stand there on some mountain again, gather up my earthly belongings and snuggle into some nice rustic cabin and call it home again. How I miss the mountains and small town life!

Then I stopped myself short before the tears fell. I can't afford the luxury of reminiscing things I can no longer do. I didn't want to start pondering all those things I long for and most likely will never be able to have. I need to stay forward looking and finding joy in those things I can still do. Lowering the survival shield might open a floodgate of sorrow that would take more energy to gather up again than I have.

If one day I win the lotto and get a bit of health again I will go live in the place of my dreams, attend a family reunion, see my grandkids and kids, travel a bit and have Christmas in May!

Until then reminisces and those dreams will remain with my shadow.

Survival mode engaged.

Who's got the button ?

2006-04-26T20:56:00.000-07:00

It's been one of those weeks, the kind where I'd just like to crawl under the sheets and forget there's a world out there--including friends and family! It's not that my friends and family are bad guys, they're not. It's because I feel absolutely horrible and feel like putting out one big ARGH and say, "BUG OFF!".

But I'm too nice for that .

It began a few days ago when I greeting the morning - ok so it was very late morning - sun, the blooms of spring with a smile and immediately got a horrid pain in my neck that sprang forth as a headache followed by weak knees, wobbling legs, a bit of dizziness and that very unsettling feeling in stomach that warns you something might just come up. Ugh! The suddeness of this development may have explained why I also found my heart racing a bit. I felt sick! And here for those two minutes after I got up before my brain had checked in to see how my body was doing today, I thought it just might be a better day. Ugh!

All day long I had that headache and other symptoms though some of them abated a bit as the day wore on. They continued for the next few days as well, which is why you haven't heard from me until now. I've been overwhelmingly wiped out flat tired. (Ya I'm still feeling yuckola but my fingers can hit keys a tiny bit more accurately tonight). This sent my brain doing it's usual mental exercise for such occasions - "Have I been around anything?". "Has someone sprayed something - it is spring afterall." "could it be pollens?" , "allergies?" ... "has anyone near me had the flu???" "or have I developed some new horribly bad condition like brain clots or terminal wry neck syndrome?" I never can quite figure these things out. But I did recall a few days earlier waking up with a very badly kinked neck ---- I settled on best guess it's "a bug" based on the unusual stomach-intestinal factors.

So what's this got to do with family and friends, huh? Well ---- As I wrote a while back I'd been reading about the guy who got a better from CFS and was planning to give some of his tips a shot. That was MY idea. Apparantly it is NOT most other folks notion of a good treatment regime ----

A bit of train-of-thought-interuptus ---- During this interum, that of my desired bed surfing, I found an article in my inbox about the new proclaimation from a recent CDC study. Tucked into several major newspapers, Washington Post, LA Times etc, was an article who's typical headline declaired something like "HEY ! THEY"RE NOT REALLY JUST MALINGERERS AFTERALL !". (take your pick - http://news.google.ca/news?hl=en&ned=us&q=CFS+wichita+CDC ) Most gave very slice and diced reports which boiled down to "CFS study of Wichita subjects by the CDC finds that some of their gene expression is goofed which makes stress more difficult to deal with", sort of thing. I had to read several articles before I came across one that gave enough details to figure out how many were tested and what the results were more specifically. I think that was the Washington Post article.

I can't say I celebrated. I can't even say I was very thrilled. They talked as if this was the first tangible evidence that we truely do have an illness that isn't just between our imaginations yet there's been many test outcomes that have shown that we're far from normal healthy since way back in the Incline Village epidemic times (mid 80's). I also suspected that most lay people who read these articles wouldn't understand that "stress" does not just mean unpleasant emotional situations but also refers to physical stressors and even exuberant times. It's not all about being unhappy. The other factor I figured may well be assumed is about the messed up genes. Most lay people think of genes and assume that means something you're born with - it's all your mother's fault. Only one article contained the word mutated.

Now perhaps I'm not a scientist but hey, how about some common sense? And common sense curiosity? Thus my questioning mind had this question - "How does this explain why four people all working in the same hospital lab becomes ill at the same time? And another four all working in the same office become ill at the same time? And what about all those who lived around Incline Village? Thus I concluded that this one question disposed of any notion that these genes were something you're born with necessarily -- more likely they're something you acquired - the mutations anyway. Where are toxins in this picture? And hmmm, since all the people in the test were from Wichita isn't it possible that they may all well have been exposed to the same 'thing' ? Seems there might be this one little missing factor in the equation....

So two days ago according to the media and the CDC it's now officail. I really am ill, physically ill.
Hmmm--- yup especailly these last several days when I've been flattened and yuckie I can confidentally say I am sick and point folks to the news. Somehow this did nothing for my plight.

The problem with this whole routine is figuring out how to get across to people that I do not need encouraged to 'get up and out'. Exercise will not cure me. It might even kill me. I don't need prodding and pushing, nudging or coercing to get out of bed. What I need is some energy and absence of symptoms. What I need right now, this minute is rest. R-E-S-T rest. I don't need reminded how the dishes are stacking up and the kid is running out of clean looking laundry. I don't need voice alarms telling me how long I've been in bed and how the days are ticking by. I don't wish to be conjoled into a more positive attitude, trying the latest and greatest wonder drug nor do I need a heaping dose of guilt. What I need is rest. R-E-S-T rest as in 'leave me alone!'.

I'm glad I read the article by the guy who improved his CFS condition. It's gotten me to think more about the benefits of resting from a treatment angle instead of just a "no choice I gotta lay here" angle. That guy tripped a button in my head which said "hmm--- sounds like a good logical idea! R&R, give my body some time to heal itself a bit".

The real question I guess is, "Who's got my button?" !

Not quite a time machine but a traveling machine?

2006-04-23T17:40:00.000-07:00

Hey! I got to go to the Grand Ol' Oprey the other night and hear Roy Clark! Those of us who are stuck here at home have to get out sometime huh? And what a better way to travel than this ---- my dear brother happened to be in Nashville and happened to be at the Oprey. He called me up when Roy Clark was playing and let me hear one tune. He thought I'd like to be at the Oprey and this was one way of going :)

On another occaision my sister called me from a Cardinals game and let me hear the crowd roar as they scored. On other occaisions my dear family would video tape events I couldn't go to like school functions my children were in.

Sometimes you just gotta get out of the house and what better way to do it than to have some helpful travel coordinators with cell phones! I wonder sometimes if people realize just how much those of us who are homebound need this sort of thing on occaision? Too often it seems most people assume I LIKE being homebound or that I must have agoraphobia (I can sure see how one could develop it if you became ill every time you tried going anywhere! conditioned response) and don't realize that the reason I seem content with this lifestyle is because I need to be content in order to stay happy and sane.

Recently I posted about seeing the part of the glass that was still full and being willing to adapt your life around your illness. I'm still so surprised to run into folks who figure that is just 'giving up'. Would a diabetic who avoids sugars being tagged as "giving up" I wonder???

So I've adapted my traveling and vacations a bit now. I have them from home. The cell phone travels are great and I'm thinking that perhaps adding some post cards and digital pix from friends and family, hey I could go a lot of places by proxy huh? : ) Sometimes dear husband and I watch a travelogue on tv and there we are, in Ireland or watch a show like the one on the Amazon. Next on my 'great ideas to try' list is planning ahead a bit and touring via TV with accompanying cultural foods from whereever it is we decide to 'go'.

Have you been on a trip lately??

Zona

Happy Easter!

2006-04-16T15:45:00.000-07:00

I woke up this morning realizing that it is Easter Sunday and this year we have no plans for a special dinner, no youngster to dispense chocolate bunnies to, nor lilies to view. Dispite the lack of the trappings of the day that we so often mistakenly think of this day the one thing that always resides is memories to reflect back on. Those days of long ago when mom made us girls Easter bonnets (yes they did wear those back when), when we'd all go to church and hear those Easter hymns...

"I know that my Redeemer lives ! What comfort this sweet sentence gives..." The tune has been on my mind since last night ...

How ironic perhaps, that those words that everyone associates with Easter Sunday, the resurection of Our Lord and Savior and rejoicing the victory from bondage always makes me think about Job.

I think many of us who are this ill identify with Job. Poor Job. He watched everything he had be ripped away from him. This children, his material things... all but his nagging wife. What we think about most however is how he lost his health and sat suffering with terrible boils.

It wasn't enough that Job was in agony from pain and suffering. Instead of comfort and encouragement his wife keep coaching him to curse God and die, get it over with. I can't help but wonder if she was an ancestor of Kavorkian or Shavio, those who figure it's better to pull the plug or deny nourishment than to leave it in God's hands. How many have told us they hate seeing us suffer so... or more abstractly hating seeing the ambiguous sufferers out there adding that it would be better to put them out of their misery? As if life itself isn't important enough, only perfection and 'happiness' is.

We also identify with having Job's friends, you know the ones that come along and ask you an assortment of questions thinking they're 'helping' you? "Haven't you seen a Dr yet? Surely he would fix you up if only you'd ---". "Are you following your Dr.'s instructions properly?" "Are you eating right? Sleeping right? Living right? blah blah" Or having some other philosophy they're sure is right like "You're depressed! If you'd just ___" or "You gotta have a positive attitude". "Just ignore it! You focus on the symptoms too much." "You'll never get better until you (fill in the blank) _____ -start doing something, get out of the house more, do some gardening, make new friends, see yourself as well, blah blah". And then there are those who scold you for whining as if you're making too much out of it. And so on. Job's friends offered all kinds of advice, all of it wrong. They prodded and pushed him, coaxed him and scolded him. We all seem to have friends like Job's.

And so we sit here feeling a lot like old Job. Most of our friends don't understand and some family members don't have a clue. They all have this goal of getting us well but too often it's as much that they don't want to see our lives dominated by illness rather than actually stopping to ponder what it must be like to live with these DD's (dumb diseases). They mean well - some of them, but they're not much help. Sometimes they're a detriment. Sometimes a major pain --that straw that broke the camel's back.

Job had all those friends too. But one day another fella came along with a different message. He said "Who are you?" "Did you make the mountains? The whales? The sunsets?...." And so he sets out demonstrating the magnificence of the Lord.

I wonder if Job's world had become like ours? We've rating by how tall our pile of wealth is, how much we own. We've valued by our title, and not really by who we are. We judge by extent of happiness, which we define as how much fun we have, how much we entertain and are entertained. We have so many things that we have come to define as 'life" and "living". Is it any wonder then that some would think that a life without those things would not be a life worth living? When we use that cup to measure our life we always focus on how empty it is, not by how full it is.

You see Satan had come along and complained to the Lord that he couldn't touch Job because God had surrounded him with a hedge of protection and foolish Satan must have figured that part of that thing that kept him from getting Job to turn from the Lord was those things Job was blessed with, his wealth, his relationships and his health. So he stripped all those things away from Job. Yet Job didn't curse God...

Job did complain. He whined. He cried. He sought shoulders of comfort, ears of wife and friends just like we do. But these friends of his, they remind me of how easily we all get caught up in defining life with everything but what matters, our relationship with the Lord. Who God is.
What is a man's life? What is his value? Is it how many degrees he gets? Is it how much money he makes? How big a house he owns? Is it how good he looks? And even more pointedly, is it how perfect or stressless it is? We've come to believe that life shouldn't have any problems. We should never be depressed or unhappy. We shouldn't have struggles or hassles. Afterall man, using his mind and knowledge should be able to solve everything and avoid the pitfalls. If you don't think we've come to think this way look at our children and think about what things we all thought was normal life in our childhoods that they now can't fathom how to live with. We think we can legislate and regulate everything to protect everyone from everything from accidental injuries from sharp edged toys to spilling hot coffee in their lap while driving! We can't allow any boo-boos! And we surely don't want to have any owies. Grab the bottle of _____ , that will take away all your pain. Now it's psychotropic drugs that is suppose to fix us all. We'll never feel sad again!

But alas that is not life. As I tell my daughter, "God never promised you a rose garden, especially not one without thorns!". Having lost and mourned my mother how much more can I rejoice the birth of a new grandbaby? Having known the depths of misery how much more do I appreciate absence of pain? These are all "life" and "living" and yes, indeed, normal. Many times these days I think society has come to expect too much and because of that we are so disappointed when it's not all perfect. Not only do we expect it for ourselves we also expect it of others. The news is full of woes these days. It seems to be increasing. Ironically at the very same time we keep setting the bar of expectation even higher. No one should ever be hungry. No one should ever be poor. Everyone should own a ----, everyone is entitled, has 'rights' ... We all "deserve" blah blah...

Job had nothing left ... except his wife and a collection of 'friends' and one young wise man who pointed out something that lead Job to say ---:

"I know that my Redeemer lives!"

It may be bad with my physical body, but how is my soul? Can we say "It is well with my soul" in the midst of not being so well in body ? Can we step back and take another view of life and rethink our expectations and definitions of what is really important ? Can we stand firmly on our new found observations and conclusions having now, through terrible illness, discovered that yes indeed there truly are other things besides all those things we can no longer do that are still very valuable, worthy and important? (most with DD's do come to realize that so much of what we believed was so crucial to us really wasn't but things we took for granted like friendships and family, appreciation of beautiful sunsets, simple things are. We are not our job, our money, our title etc.)

Oh I wish I had the words and time to go on because there is much on this subject that I wish I could convey! ...but it's difficult to put in few words here... especially without sounding trite or condemning or trivializing... So many difficulties plague us, weigh on us alongside the physical issues.

And here I sit on Easter Sunday without ham or turkey or bunny shaped cake with coconut hair and jellybean eyes. Without the obvious - ability to attend Easter services at a church, the biggest missing thing today. Without laughing children with chocolate clown mouths. Without any visible indication that today is a day different than any other day this year... But in my heart a melody plays "Jesus Christ is risen today, Allelujah!" and "I know that my redeemer lives! What comfort that sweet sentence gives" because my comfort, my contentment can not come from a painless body, an easy life with no stress.

When I look around at the world today and see all the troubles brewing, the attack on families and liberty, threats of pandemics and wars and rumors of war and contemplate the devastation of hurricanes and earthquakes; I think about how much we still do have compared to how bad it could be and I wonder how society would handle more tribulation with our expectations. Will we be angry? Will we protest and demand? Will we shrink up in a ball and give up? By what measuring cup will we measure?

I hurt. There's a lot of things I can no longer do. I'm pretty much homebound. I have a lot of symptoms and no energy. I could make a long list of my woes that may cause you to think my glass is almost empty but oh how wonderful is the part that is filled! Some of my acquaintances are like Job's, but some friends and family are worth more than their weight in gold. That is only part of the contents of my glass ---

Today we celebrate finding that grave empty. He is risen! He is alive! Though the things of this world may confound us and weigh upon us we have a Lord who knows our sorrows, has felt our pain and who has sent a Comforter. One day all the things of this world will pass away. Things we thought mattered much. But even in that day we will say, "I know that my Redeemer lives! and nothing in this world can separate us from the love of the Lord."

In the end Job had double what he had in the beginning...but even more importantly, he understood that his happiness, security and salvation was not in those things but in the Lord.

Hey, Who's In Charge Here Anyway - Part 2

2006-04-06T23:47:00.000-07:00

I wrote part one as a prelude to this part - two. If you haven't read it then go do it now because you need to understand just where my head's been the last couple of weeks in order to really appreciate what I'm going to say next !

I have a headache again tonight. I usually do not get headaches but seems this is the month for them. Pollen season? I'm not sure, daughter is sick too - cold? or allergies? Argh. Besides the bone-tired fatigue I'd had for such a long time (it seemed like forever) I've also been having stomach/gut problems, reflux, backaches and an assortment of other symptoms.

[***I started writing this part two, the above paragraphs, days ago and just now getting around to complete it. I've had a lousy few days here as well as many interuptions and other things that demanded my attention... like helping clients fix their computers over the telephone. Yup, I fix computers amongst other 'from home' businesses. I have to. I don't get any form of disability, not that I'm not that ill but that I simple am not eligible for any. So I've been wiped out...drained, zapped and kaputzed. But meanwhile I've been pondering how to write this part two because there's a lot I want to say and you know me, I'm not real short on words! ***]

Who's in charge here anyway? You would think it would be me, huh? I wish. After I wrote that first part, which was after a couple of days of actually having a few good moments in the afternoon for the first time in over a year, I thought I'd take the opportunity to share my rejoicing over that fact with a few friends and family members. Maybe a big mistake! Of course, after over a quarter of a century with MCS and CFS as my constant companions, I knew that the improvement wouldn't be permanent, but hey, we grab on to those moments when once again we feel hopeful, feel excited and jubilent having a few hours of no pain and less fatigue. I also had been feeling rather, hmm... well, like I had turned into a whiner and complainer and probably was a real drag to listen to during this last year of great travail and suffering. And so I thought for once I had an opportunity to say I felt better. So I did. I told everyone who would listen as well as posting it to a few lists I'm on. I was elated! (and I so needed a change!)

Needless to say it didn't take too many minutes for that crushing fatigue to sweep in again and knock me right off my feet. I'd over done it. During those minutes those two afternoons I'd done the stupid thing of trying to catch up on a year's chores I was behind on. All right, I'll admit it, I did the dishes, swept the kitchen floor and mopped, quickly top cleaned the bathroom and vaccummed the livingroom but hey, to me that was more work in one day than I'd been able to do in many years even if it doesn't seem like much to you. Prior to that I would stack the dishwasher and go lay down before I fell down. Vaccuum part of the floor and then have to stop etc. Housework sure does pile up a lot that way you know ? . So ya, like someone who can never grasp getting smarts no matter how many times I paid the consequences, I had done it again -- over done it. Obviously no one stopped me either. Hmmm...

So there I was sacked out in bed wondering if I had enough energy to breath with, wondering why I'd done such a stupid thing especially after having read that article that had emphasized pacing and resting even when feeling better. It was one of those 'duh me' moments or rather "oy vey!" perhaps ? But it was worse than that even....

I felt so bad AND sooooo discouraged! All the momentum I'd gained from those few minutes of 'betterment' towards hope and encouragement was zapped in a flash - crash! I wanted to pout and I reaaaally wanted a shoulder to pout on. I wanted consoling and someone to understand and share just how bummering that was. But alas! I had just announced my glee and ... Ok I'd better stop right here and insert that missing part of the story ?? ---

It didn't take terribly long after reporting my minutes of betterment before i began recieving psychotherapy. A couple people informed me that it was about time I felt better. Some said they were so happy to hear how I'd changed my attitude. Others told me that I had been focusing on my symptoms too much. And still others implied that now that I'd started thinking more positive I would be healed. Everyone seemed to assume that this meant I was finally better -- as if it were a permanent thing. Some family members thought it was about time I had done SOMETHING. It seemed everyone seemed to think it was high time I stopped being ill. And some of this came from other people who are also ill.... Some meant well, others just wanted to dump whatever burden they thought I had been to them... I began to regret that I had said anything to anyone.

It stunned my how quickly it seemed that how well or not I was doing, seemed to be more about other people than about me. It seemed as if illness was like a volleyball that you could just bat away if only you wanted to-- as if to have symptoms and feel lousy was somehow something one chose to have. And as most of us have complained about, as if all chronic illnesses must be more mental and attitude rather than real physical, or at least as if they are controlled by emotional outlook. Hmmm.

At first glance that may lead one to assume that the bottom line is that others think WE are in control of our illnesses, as if we possess some sort of switch that we can just flip on and off at will controlled by our thinking. Oh to have such control huh? But after second thought it becomes more apparant that it is really that THEY want to control our illness or at least to control how we deal with our illness, in particular how it affects THEM. Yet even that is not an accurate statement. Underlying the whole thing is that somehow we, society at large, have come to unconsciously believe that anyone who has lost their physical health to a major condition also has lost the ability to make wise decisions about what to do about their bodies. We somehow believe that only the Whizard of Medical Oz knows what we mere mortals can't begin to grasp. We think that only those with initals after their name possess the knowledge and skill to guide our minds to the correct treatment and/or therapy course "for our own good". And those who are degreed in the tinkering of the mind to explain to us what proper thinking is. Even Oprah knows more than we do ! She's a celebraty at least. We are mere ailing mortals devoid of the wings we once could fly with.

It was some decades ago when I noticed there was this mass concious thought that said "your can't trust your mind, it can lie to you"... and we all heard that "I'm O.K. - You're Ok too". Now apparantly we can't trust our bodies either. It lies too. We surely can't follow our instincts in what our minds and bodies need. They lie. Only "THEY" know what's real (true).

What's my bottomline? Well, I'll tell you. I choose to believe that I know what is best for my mind and body and I know what course of treatment I will follow. It will be MY decision because I am in control of my own life, thank you. ---

---and if you don't believe that now then I ask you, how on earth will we be allowed to control our own lives when we are elderly yet too? Will we agree that you loose your reason as you age? That somehow getting old means you need to be treated like a toddler and have all the decisions made for you --- even the decision on when you've lived long enough? Afterall haven't we all begun to buy into this notion of "quality of life" being the upmost point to base medical decisions on???

Pray. Pray real hard!

Zona

Alouicious MacDoogle ??

2006-04-06T23:41:00.000-07:00

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Zona the hermit writer