Wednesday, May 28, 2008

So was it worth it?

Was it worth it? That is the obvious question that no one has yet seemed to ask and yet surely must be on people’s mind. Elizabeth goes to graveyard in the sun, spends over an hour to get dressed up, knows she has a fever, plays in graveyard has attack and ends up sick for many, many days. Indeed a slight fever has returned tonight but I believe that only indicates a weakened state in general. So, is that REALLY worth it for a few pics, all that pain?

Well no. Except with chronic and degenerative conditions there is not A+B=C, there isn’t even always A+B=Gorilla on your chest! I take Echinacea twice a day to help make sure I don’t GET a fever. And I haven’t had one for over two years. I take aspirin every day to ensure I don’t have TIA or seizures. But if I went and did,,,..Ice sledding and had a seizure, the question would be...WOULD IT HAVE BEEN WORTH IT? But I think the question should be: “What is the value of a life, if after ALL the precautions you have taken, you are still too scared to LIVE IT?”

I took what I believed to be reasonable precautions against infection. I now believe that I got a cold which started ended sometime Sunday, ending on Monday. That is what the PHYSICAL evidence of how colds progress demonstrate: Sore throat, slight fever, feeling better, nose fills, sinus cavity feels as if it will explode, cavity drains, person better. That all occurred, and finished by Monday...well except the last one. Because it seems that in pushing my body, myself, I learned a “new trick” that my body can do. After a 14 hour medical appointment without rest where a nerve conduction test is performed up to six times in succession, and I get no sleep, that pushing some more a few days later creates what I term an “unbalance.” Or rather, instead of ME having X amount of spoons, to spend on what I can do, it seems my central autonomic system has a certain number of spoons and when pushed, it just sort of lets go of certain things, like my heart getting lots of erratics (we knew about that). And now, during periods when the temperature is hot already the ability to maintain function over my body temperature (which occurred once for two to three days early on last year actually). So yesterday I get a fever at 1-2:00 pm and I wear the ice vest but I am not as burning hot like the previous night and don’t need extra ice. Tonight we will see if I need the vest at all and how long. And we will see if the fever, which returned at 8:30-9:00 pm returns tomorrow at 11:30 pm or not at all.

That’s the boring medical stuff that I have devised because I REALLY don’t want to do this all over again and again and again. But more importantly should I take risks and what are “reasonable risks?” There isn’t anyone around with a big book saying, “This is how you should change your lifestyle and these are the benefits.” To be honest, the medical advice I have been getting is more along the, “Try to keep yourself out of hospital long enough so that we can do more tests on you.”

I will say it plainly: I do NOT have control or a clear idea how to maintain my condition. I used to, then my fingers changed colours, then I had a bunch of TIA's, then I got a long fever, then I got heat exhaustion all the time, then I got heat stroke, then I went into shock three times in 24 hours. I DO NOT KNOW. And so far, no one else seems to know either. Linda was on the phone today working with the people on the medical alert bracelet to put the “most important” things that would likely kill me. That’s the phrase they and Linda used, “Kill her.” Turns out they didn’t have enough room. So we had to make a choice, then realized we forget to put “heat intolerant” so called back (now ever more things NOT on the braclet, should I get two?).

I want to get better. I went for a wheel down to the video store on Tuesday because medical journals say that total rest during an cold or flu isn’t the best, light exercise can help. Except my cold was over, and I was just stressing my autonomic system, using up a “spoon”.....maybe. See, that’s just a working theory. I want to figure out how to get my system to have more spoons so that I don’t go into heat exhaustion (I think having an indoor area where I don’t strain my body 24 hours a day to regulate me WITHOUT sweating would be a start). I want to do things. I want to write, to wheel, to get outside, to get into a vehicle for a reason OTHER than a medical appointment. And yes, every single one of those desires is a risk. I want to take trips, I want to last LONG enough to take some trips this fall. And yes, pushing myself like I did in Japan WILL, no question, WILL, make me too ill to continue. So I have to figure how much to push. Those are all risks. I take risks very lightly, and I take them very seriously. Because one the one hand, what is the worst that could happen: I could die? On the other hand, if I don’t balance this correctly, the party is over! I guess it depends how much I want to do something on how willing I am to bend that envelope and find out, in my current state, what the result will be.

Which means, I will do what I do. And yes, that may not be things you would do. But then again, isn’t that what people first consider almost EVERYTHING that I do?

So was it worth it? I have a picture of me as the sexy wanton wheelchair girl. How could it not be worth it?

See, the only different between ME doing things and YOU getting on a plane is that you know your chance of dying, needing medical intervention or having something horrific happen is 1 in a million or higher while MY chance is about 1 in 5 or less. So do I do five things, and have five memories and try to figure out what NOT to do next time, or do I have ZERO memories, and live in a little shell. I dunno, I kind of think that I would want people to know whether I am alive or dead, and if I ACT like I am dead before I am, then how would they tell?

26 comments:

SharonMV said...

Hi elizabeth,
I understand a little of what you're talking about. About having to find out how much you can push your self. For me, the consequences are not as high (unless I get a resistant infection). For years, I've had such terrible fatigue & pain from my undiagnosed Lupus, constant infections from & fevers from my undiagnosed immune deficiency that i had to "push" to do the simplest things, to take part in life at all. Almost any time I went out among people i would catch a cold, & then get a sinus infection. But I had to keep going. I had no way of knowing how ill any activity or outing would make me (just that no doubt, there would be payback). Trying to rest & save up energy (didn't know about spoons) for an event didn't work. I could wake up the next day sick from Lupus or an infection from bacteria already in my own body. One of the criteria I used to judge "was it worth it?", was if my memory of the day was shadowy nightmare of pain & misery or did I remember the fun of sitting on the floor with my nephew as well as remembering the awful joint pain I had that day.

Only you can chart your course. You have to try and balance the risks & try to live your life. It's hard I know. The risk for you is great. We love you & don't want anything to happen to you, or for you to endure more pain & sickness because of your choices. You must fly (and pose for sexy pictures in grave yards). Take all that you learn, use your mind &judgement as well as your heart to make your choices. And also listen to Linda. She is on this journey too.


Sharon

Neil said...

We know that you don't sweat naturally, so you have to engage in vigorous exercise to force your body to sweat. But the exercise stresses you, and can cause seizures and other undesirable events. So, I realize, you're basically risking killing yourself to stay alive longer.

Is this a catch-22 or not?

But if you're going to die anyway, why NOT live until you do take the big trip?

So, Elizabeth, if you do things that we wouldn't, I'll understand. I might not approve! But I'll understand.

May I suggest, however, that you make your risks as safe as possible? Badminton, as great as it is, requires no air conditioning, and that's a bad thing for you. So could you find another activity that would allow air conditioning and not cause blunt trauma to your head? Yes, I think you shouldn't box. But I know it might not stop you.

What about Tai Chi? It's an exercise that can go slow or more energetically, depending on how you feel.

Perhaps you could go mall-walking/wheeling in summer when it's too hot to wheel very far outside.

I'm tired, so I'm going to stop, hopefully before you decide to wheel over here and smack me for my impudent suggestions.

I love you, Beth, in an avuncular sort of way, and I want to keep loving you and your writing, and Linda, for as long as possible.

And meanwhile, I'm learning to live a little more than I have been too. Thank you for teaching me, Frau Professor!

Zen Hugs for a healthy Elizabeth!

yanub said...

Was it worth it? It never occurred to me to ask that. Now, going to badminton, that would have been not worth it, what with their being adverse to having any ventilation during the summer. But fun with dead people? If you can do that every week, and be laid up two days afterward, it would still be worth it.

Is there any chance you can avoid going to get poked and prodded for what seems to be only the morbid curiousity of specialists? I mean, wouldn't it be reasonable to demand to know just what benefit you are to expect from whatever the hell the specialists want to do, and decide whether or not that is worth the physical cost you will have to bear? I don't think most doctors ever consider that what they want to put us through costs us in terms of being able to accomplish anything else. It's why I won't do PT anymore, even though supposedly that would be helpful. I can either have a life, or I can do what the doctors say to do. Can't do both.

Oh, I thought I'd share what Google thinks I'd be interested in when I'm reading Screw Bronze comments in Gmail. Among today's offerings are Screw Compressor, Vegetarian Meat, and High Temperature Furnaces.

Anonymous said...

Good to read your post Elizabeth (and Linda;-))

Inma Seiden

Victor Kellar said...

In order to access risk you have to define what is "safe" and what is "dangerous". The definition is your particular challenge. It seems everytime you think you learn what is potentially dangerous (badminton, trips to Japan, trips to the graveyard) a new wrinkle is introduced; a new spoon may be taken away you just don't know which spoon and away. Its a learning process and you are learning but there may be a clock on this particular study session and the reference materials are somewhat arcane ...

Slow and steady, one step at a time that is my brilliant, cliche advise for you

On a brighter note I've finished the Weekend Adventure Video. You can find it directly here If people are interested in some of the thought processes behind the creation they can visit my blog. Hope you enjoy it

cheryl g said...

I didn't even consider the "was it worth it" question. We went and had fun and made memories so I assumed it was worth it.

I want you around for as long as possible but parking you to sit quietly in an air conditioned room for all your waking hours would strip you of important parts of yourself. While you live you have a need to live, to fly.

All of life is a balance but someone keeps randomly moving your tipping point. Guess we'll just have to continue having adventures with the caveat that sometimes we will need to shorten those adventures.

Gaina said...

I think those test took spoons away from that you would have otherwise been able to use for your afternoon at the cemetery. How bloody dare those doctors do that to you!

When I was a child I had a lot of operations that, looking back didn't actually do me any good and a lot of them were experimental. I can't tell you how angry it makes me to think of all the summer vacations from school I spent in hospital for 1 week then in plaster for another 6. There was a definite inequality between the treatment other kids with SB got in terms of corsets to keep the spine straight and various other things that makes me feel like called those the 'guinea pig years'.

Don't be anyone's guinea pig darling. If they can do something for you that will alleviate a symptom to a level that makes the process worth the discomfort, then go for it but otherwise I say put your happiness and comfort before their curiosity.

Everyone thought Ranulph Fiennes was crazy when he did the Eiger Challenge recently because if his heart condition. What they all failed to understand was that climbing is the great love of his life and I can understand if he thought 'Well, if I'm going to die I'd rather do it in the most beautiful place on earth'.

It's time to start playing with your spoons and telling the 'professionals' who grab them off you to take a hike!

Tai Chi sounds like a good idea, especially since it teaches you to slow your breathing.

laurie said...

Hi Elizabeth, Found you through Sara.
I just wanted to say how moved I am by this post and your blog. I totally get it - everyone must take calculated risks every day (although the risks are much bigger for some than for others). And you are right, choosing to take no risks, means not living at all. And there are still no guarantees of sticking around...
Thanks so much for writing so well and so openly. Take good care, L.

FridaWrites said...

I agree that it might have been the stress of the prolonged medical appt and witchy dr rather than the cemetery visit.

I also continually try to figure out how to get more spoons, but often lose spoons for the day or week in trying to do so, which is exasperating.

As far as my own no badminton comment, I meant for the one day, to give your body a little more time to recover, though only you can no your actual condition and inclination.

I would be living much as you do. I stay in a lot, but not because I want to! Getting out makes me happier than anything.

Lene Andersen said...

That's the thing about having family - all of a sudden, people start having opinions about your life! ;)

Only you can decide what's "worth it" in your life (hopefully Linda gets a vote, too). Because it is YOUR life and yours to live the way you want - more meaningful for you than most of us because we don't have a best before date staring us in the face. What makes me worry is the part where living has such large consequences for you, but I'm doing my very best to quietly bite my nails instead of getting all bossy. Don't always succeed, but I try.

I agree with Neil, though - try not to take risks in the noonday sun or a hermetically closed gym with no A/C. There're risks that might lead to badness and then there's the ones that will most definitely take you there. Weird questions - when I was a kid, we played badminton in the street/backyard/park. Could you do that on a cool day?

KateJ said...

You had us all really worried there, but now you're sounding more like "you" again. Not having chronic illness or a disability myself, I know I can't even begin to understand what it's like for you, living on the edge day after day. But I can imagine - I think - how taking the risks you do is what helps you feel human and confirm to yourself that you are alive. Some people choose to take risks, and some have little choice about it -

I was reminded just now, hearing the air ambulance go overhead, of a young man called Iwan who lived near me and sadly died a year or so ago, just turned 30. It was usually him the air ambulance came for, as he had Cystic Fibrosis and also a kidney transplant. He lived with CF all his life, doing everything he could to live a "normal" life, working on the farm, taking part in sport, even being prepared to jump out of a plane to raise money. He was forbidden to do the sky-diving (a friend took his place and the money was still raised) but he did climb Snowdon, Wales' highest mountain, and various other challenges. It wasn't that he was trying to prove anything to the rest of the world, he just needed to keep proving it to himself.

rachelcreative said...

As someone who lives in a little shell most of the time I'd say it is possible to be happy and fulfilled without lots of DOING. It's not an easy adjustment to make for an active, motivated, physically minded person but it is possible.

Just reminding you that "resting at home" and "as good as dead" are not quite the same thing.

However, each to our own and no-one, no-one but you can say when a risk is worth it not. And even you probably don't really know before or even after sometimes!

Never doing anything is just as much a risk as going out and doing stuff but maybe for different reasons.

No-one gets a manual to life no matter how straightforward or complex that life plays out to be. You just got to keep on living.

For me I am learning love and happiness are the most important things to me - so family and friends and doing good deeds and listening and my art and my blogging are the things that fulfill me the most. The simple things.

I don't know how you can let go of some of the physical stuff if the spoon cost is more than is practical, or even whether you consider life without physical stuff as not worthwhile.

I for one love you for who you are and not for what you do.

I love your mind and your words and your character and your soul and the way you see life. I have no first hand experience of you as an athlete - yet I still come back time after time to connect with you.

There's so much more to you than the spending physical spoons and I hope you can embrace that too. But I'm never going to disapprove of the way you choose to live your own life and to die your own death.

Veralidaine said...

If it makes you feel that flying feeling even briefly, it's worth it. The more stories to tell, the better.

em said...

Well, first of all your post card got here today and it was a miracle because I spent the morning crying on April and just wishing that we could make it work between April and Bob and I and then feeling so wrong about still wanting that. Oh, I was miserable. And then I got out of bed and there was your postcard and I read it and it totally made me smile which means that your plan worked! You are my miracle today and I'm still smiling, so thank
you!

Second of all, I second what Neil said, I am learning to live a little more and I'm grateful to you for your help.

I think the tai chi thing or maybe yoga could be good. There is still competition, but it is more within yourself. I don't know if you would like that or not. But I swear, yoga makes me sweat shocking amounts, and I don't sweat a lot. It's like you can feel it building a fire in your core and it works it's way out.

Also, when I read Yanub I was practically cheering. I had a friend who had a very aggressive form of cancer and I watched the experimentation that went on with her, and it makes me VERY ANGRY to think that someone's life is being reduced to a vehicle for someone else to gain knowledge without them having some commensurate benefit. I was mad when I read about your testing, and... sometimes I back off from saying stuff because as Lene so eloquently put, it is *your* life and I don't want to feel the right to barge in just because I care. But dammit, What Gaina Said! Unless there is a benefit for you, don't let them waste your spoons. And I mean a serious benefit like actually being designated disabled so that you can have some more help.

The great truth is that we have to live our lives in our own way and we all die in our own time. Thank you for writing that truth, so that I can remember to look at it.

Neil said...

Victor: That video is WONDERFUL!!

Em's lady bending over the roses, with only the flowers in colour is great; and Tayi's thistle turning from B&W to colour is truly (oh, crap!) inspired.

I must confess that I'm rather proud of the shot of my love's hand threading the loom. She wanted to take a photo of me digging the garden while wearing a kilt, but it ws far too cold and wet for such a shot. Maybe another time...

Elizabeth: Back in January, you asked for a family to adopt you. Well, you appear to have gotten your wish, in an Internet sort of way. NOW you get to put up with all the unwanted sadvice (hmm, that was a typo, but I think I'll leave it in) and contradictory orders from all your distant uncles, aunts and big and little brothers and sisters.

However, seeing Victor's video, I'd say all the crazy relatives are worth having. So, a TOAST to the WHOLE FAMILY!!

Hugs to all!
And Beth, go boxing tonight if it's worth the cost in spoons. Just, no head shots from the opponents, okay? One of my high school teachers had been a golden glove boxer in his youth, and he was quite obviously slightly scrambled as a result.

Victor Kellar said...

Ok, I made a mistake with the video so I've deleted the blog and deleted if from Vimeo. New version forthcoming

saraarts said...

Okay, but I still don't think you should be playing badminton in an airless, suffocatingly hot gym just yet, if ever again. And that's based strictly on what you have told us that you DO know.

(Isn't there anywhere to play it outdoors during the hot months? We used to play it outdoors in Southern California. So a breeze snags a birdie and shifts its trajectory a tad. So what? Randomness injected occasionally by nature is part of the game.)

But of course it is absolutely none of my business, and you should please yourself and Linda.

Elizabeth McClung said...

Sharon: it is the "undiagnosised" that saps the spirit, and makes one feel, ug, I am not good company as I just came from another (or should I say my final) specialist.

To have the level you have without a name would have produced both anger and dispair in me. But life MUST go on, I believe that, and I think you descriptions show that too.

I think we are both currently the best experts of our illness, and that is a terrifying statement becuase at no time have I known so little when making decisions.

Neil: Yes, that is correct, and becuase I have not been able to do that or sweat for more than three weeks, I am very surpressed right now.

If I knew a course that would guarentee a certain level of function in October or say Jan 09, I would take it, if I can change my eating my sleep and all other habits, I can change what needs to be changed, but no one can tell me that.

My boxing days are just about done if not already over - I am just too weak and too many nerves destoyed to box with the speed needed to keep me from injury, and with an unknown level of bone and muscle break point, a very high risk there to. Which of course, means I am likely to go tonight.

Sports that interest me at this moment:

Sword fighting,
Charging the gates of hell
Tilting at windmills
Leading attacks on the barricades

and perhaps hang gliding, Judo and wheelchair racing. If I crossed the finished line unconscious, that would be the type of balance I want.

Yanub: I am definately going back to badminton, I mean, they just made it a bit CHALLENGING, put a few extra obstacles in the way, that need to be overcome, maybe play with my vest and a misting spray bottle?

Simple life threatening heat isn't ALONE going to stop me!

I agree with you, having seen another specialist, I currently feel that most specialist could be shoved up their own rectum and still produce the same quality level of product. Or perhaps they know how to help and save the 75% of people....just not me! Not FUCKING ME! (sorry, SMALL anger issues today).

Inma Seiden: Uh, thanks!

Victor: I really enjoyed the video but I can understand the obsessive need to get it "perfect" - I hope you will let us know when a product you are HAPPY with arrives.

As for life, if I don't act, I die faster, if I act incorrectly, I die faster - seems a bit of the lady and the tiger.

Cheryl: yeah, and record all the new symptoms so we have some idea of when to limit things - I do think that the temperature in most places including, well, outside, and inside, are a heavy factor in lowering my resistance or extending the cost of going boom!

Gaina: Well, I am with on the general uselessness of the medical profession, which is odd since they turn out many but SO many are SO bad - I don't know of anyone who says, "My first GP was PERFECT, then the Neuro I was sent to was ALSO PERFECT, and the Rumitologist was PERFECT, and they all completely listened to and respected me"

Well, I tend to think someone climbing mountains IS a little odd but if it is the love of his life, then go for it, I mean, the MOUNTAIN won't care, but obviously he does.

See, I should probably take Yoga and Tai Chi, it is just, my problem is NOT slowing my breathing, often my problem IS breathing, or rather I have MASTERED slow breathing to the point where I cannot be surpassed, which is what displeases people, since it turns out the body actually WANTS you to breathe (or at least the oxygen you breathe in).

Laurie: Thanks for your comments and though they are for me, not pointing a finger, that is just how I am, if I am alive, I want people to hear the noise of it!

A Bear in the Woods said...

I'm all for living until I die. Half living and hoping for the best kind of sucks.

Victor Kellar said...

The video lives again. See it at http://vimeo.com/1089424 or on my blog

SharonMV said...

Yes, Elizabeth, the undiagnosed thing was hard to deal with. I mean I had DXs - fibromyalgia, chronic infections, idiopathic immune deficiency. My primary doctor & I knew i had an autoimmune disease, but bllod results at the time did not impress the rheumatologist. When I got the idiopathic immune deficiency dx, it was from a doctor doing a clinical trial teating people with interferon alpha. He diagnosed a defiiciency in Natural Killer cells and I was among those who actually got the drug during the trial. It was the only thing that ever helped diminish the infections, before IVIG. but of course, after the trial, my insurance co. refused to pay for the interferon as it was an off-label, experimental use.

After years of this, I finally reached a point where I didn't care about diagnosis - having an answer, a name. I only cared about trying to find treatments that would help me. Then I got worse & finally got an ANA positive enough to venture going to another rheumatologist which led to my Lupus and CVID diagnoses in 2006. And now, this year i find out I also have adrenal insufficiency (which has also been going on for some years). And I may have a few more dxs soon. As I was right about the adrenal problem, my doctor will probably test me for anything else i ask.

But although untreated infections could have done me in, or the adrenal failure if it had gone undiscovered much longer, most of my illnesses just make me miserable & steal living away while life remains.

But you definitely need a faster road to diagnosis and some treatment, even if it is only for symptoms & improving your quality of life.

Elizabeth McClung said...

Ahhhh! I can't do all the comments tonight becuase I have to get to sleep but I needed to say very quickly (I will come back and comment tomorrow morn, I promise!) - oh, and yes, I went boxing and yes, I had four bouts and shadow boxing and now I Am in MONGO pain - and yeah, people noticed that I am well....fading, not in spirit, just not as much muscle, not as big, fading:

Rachelcreative: though you are in a fixed location, I do not think of you as "good as dead" indeed when I was sick, I kept thinking, "How does she take a picture when I can't even support my own head, much less eat"

You produce, and produce, and produce. Okay, you are not like me with the need to wheel down the road INTO traffic, but your collection of work over the last year alone demonstrates a life lived; or that is how I see you. True, maybe there might be some "adjustments" for me to do the same style (like Hammer to the HEAD adjustments). Thank you for loving me for who I am. When my grandfather died he was humming the tuneless song which meant that in his coma he was out working, doing those little jobs that men who live in the woods do; which is how he defined himself even in retirement (doing jobs for the whole apartment building). I knew then that my grandfather died in his moment of LIFE. Since ironically I have the same disease, I want to know that when I go, I will have left no frontier unbroken, no adventure unchallenged that was possible to me. And if I go out growling, because I see something, and all I need is to WANT it MORE, that will be enough. I like doing things for others and making people happy. And sacrifice. I'm sorry, that's as much as I can explain with the words I have now.

Em: I am really glad the card came and that it made you smile. That was the purpose so mission accomplished.

I don't know, I feel today, abandoned by "medical science" that sometimes you don't die in your own time, sometimes that time is taken away from you, or withheld. And that makes me angry. But not at you.

Victor: yah! I liked this one and the last one - I liked them all!

rachelcreative said...

In other words - it's worth it. Every time.

:o)

Elizabeth McClung said...

Fridawrites: I think the limitation of the "spoons" analogy is the implication that it is math, it is SCIENCE, when more often it seems like weather forcasting - if I do this and plan for sun (aka lots of energy) why then does it often RAIN (loss of energy) - dunno, gravitational belt around the earth..haha.

I too stay in a lot and often can only go out when accompanied by Linda or a volunteer, I am fortunate in that I spent the time to get a volunteer match who LIKES activities and that Linda so often accomadates my odd wishes. And yes, I come to the eve and go, "Oh no, not badminton" but then I think, do I want to have spent FOUR days inside tomorrow, or should I go now? So yeah, I spend lots and lots of time inside, wish I didn't, but oh well, it is what it is, right?

Lene: I don't have a problem with opinions, I think I have one myself...haha.

Yes, I know this is the difference between you, who is the disability marathoner and me who seems to be the 800 meter dash. I mean, could I do Japan now, in my condition? No. Not like I did. So that is passed. And that is always reminding me, like a freaking tell-tale heart, saying, "Use it or lose it baby!" (okay, maybe Poe wouldn't have used THAT phrase!).

I think, for the summer, I need to take it slow, just breathing in the heat is going to be hard work. I too need to focus on what little I may be able to do and on what is important: people, caring nabout people and the first is Linda. Spend time with her, spend time online with people I care about.

Veralidaine: totally, the more stories the better. I want to go out in a blaze, but this is not how the world ends....

Kate J: Thanks, I think for other people there is like a lot of choices and for me, I have to have overwhelming drive to get out and do ANYTHING, to get past the energy it takes to dress, to eat, to get ready to go, to get the medical gear prepped and then to DO SOMETHING, and yes, then to try and recover. So it isn't just, "I'll pop round the butchers and get some sausage for supper" - I wish those days were back, but now, I guess I really do live life deliberately (when I am sane, conscious or not fevered).

I think, I understand that guy, because when so many, many people and organizations and even medical establishments write YOU and your life off as over, then there that is something which needs (for someone like me, and hime) to be opposed, that very idea needs to be opposed.

Neil: I really liked the video too! I liked the loom pics.

I did go boxing, I had four bouts and I did block MANY head shots but yes, as my coach says, "every Tap-tap-tap to the head is more brain cells dying" - but then I think every time I stop breathing or my heart doesn't beat, or a TIA, that's a few brain cells dying too..?

Saraarts: No, they don't play it outdoors, while the boxing they do with the doors open and fans going. I will find a unusually cold day and return, but yes, too much risk and too little return. Or I could wear the "cool vest" (shudder, oh do I want it THAT badly, no, no, no!)

A bear in the woods: you said it, exactly!

Victor: thank you so much, I will post this tonight (Friday night) in case people miss it - I really like it and am now wanting your editing software badly).

SharonMV: yes, I can see that after a while, the whole, "Let's actually LIVE and not suffer" would drown out the need to know the name. And that is what I want, a heads up on what is coming and how to deal with it. And when specialists are going, "So I THINK we are about ready to admit you have autonomic failure", I am like, "I don't have TIME for you to be a year behind, you need to catch up and get ahead of this or I will have even LESS time than I have" - I am glad they caught the adrenal thing. Was it from the 24 hour urine test, the small cancer which shows up.

I am glad you have IVIG, but SCREW the insurance companies. Interferon, huh?

SharonMV said...

Hi elizabeth,
No It's not the that adrenal thing (can't remember how to spell that one!) My adrenal cortex has stopped making enough cortico-steroids (hormones you need to live). For me it's probably another autoimmune disease - Adisson's (like JFK has), or from my Lupus attacking the adrenal cortex. Some people get it from being on prednisone (a steroid) for long periods & in that case function might come back. But although I'm on a low dose of pred. now, I wasn't at the time I first started having symptoms (3-4 years ago). What - worse fatigue?, now why didn't I know right away that was another disease?
Sharon

Dawn Allenbach said...

You sit in your house and fritter away watching DVDs, or you do things to make you happy in the time you have. So, you push yourself too far -- you decide, "Six hours at graveyard not good. Maybe four? Three?" There are too many things to enjoy.

However, light exercise with cold applies to people WITHOUT autonomic failure. Keep that in mind.