Chronic Illness Or Syndromes : LUSENET : notestoall : One Thread

Even though I may not end up diagnosed with it, my Mom still has it so it is still of interest to me. I know how hard it is for her to get up and move around sometimes and it didn't help when she looked at me the other day and pronounced that I would probably end up on disability because of it. Thanks for those great genes I said.

-- Renee (, March 22, 2001


Like everyone else, I have to live and cope with the genes given me by my ancestors. Horrible hay fever in my early years, years of shots and a bit of relief therough adulthood. Now allergies to a certain extent and disposition to be affected to bronchitis and other respiratory ailments. Living with a bad back which, of course, gets gradually worse. Cope is the code word for me . . . .

-- Denver doug (, March 22, 2001.

You mean other than growing old? How about undiagnosed for years intersystitial cystitis--go look that one up-- bulging neck disks and lower back ones now gathering arthritis, chronic shoulder bursitis, both of them.... I'm in great shape!

What is hard for me is accepting the fact that things won't heal or go away no matter what you do.

btw I had a female hmo that got real lazy and now I have a male one who wants to do stuff inhouse.. who doesn't think WelMed means a workup so he can follow a new patient...

Medicine prevention.. HA!

-- Bonnie (, March 22, 2001.

I don't have any chronic illnesses to contend with, but I have the genetically handed down dentinogenisis imperfecta which will cost me about 50 g's before all is said and done. Not only do I have to have my mouth revamped, including a bone graft from my hip in May, complete with implants and crowns on all the remaining teeth, but my son has it as well. My genes were not nice to him either.

I hope all goes well Renee. I can't believe you've not had a female doctor. I generally only go to female doctors.

-- Athena (, March 23, 2001.

I was diagnosed with a disease call Focal segmental Sclorosis, Nephrytic syndrome about 3 years ago. It is a scarring of the kidneys and there is no cure. No one knowes what causes it or anything. It is treated with diuretics and blood pressure meds and eventually my kidneys will go into renal failure. It't not something that is hereditary so no one in my family has the slightest idea about it. I have no pain,I just get really tired at times, but thats the breaks and as long as I can maintain, then I'm Alright. But ya know, sometimes I get to thinking about dialysis and transplants and kind of wig out.

-- Lucy Lee (, March 24, 2001.

Well, they've been predicting I'll end up on disability at some point since I was 19... best to just prepare for the worst as well as you can, and then don't waste too much of your time today worrying about what might be happening down the road. "Sufficient unto the day" and all that. If you have any auto-immune disorder - and it definitely sounds like you do - excessive worry can worsen the symptoms.

The toughest part is learning how to rethink what you regard as 'normal' - learning to accept that you can't overdo unless you want to spend a few days recovering from it, canNOT engage in high- impact activities unless you want to hurt yourself, and that no matter how tough you are it's not laziness or any other self-blaming quality you gripe at yourself about if decide to rest. Chronic disease DOES affect your outlook on life and your sense of control, so getting a handle on that and finding ways to keep yourself rested, at peace and rejuvenated is a critical part of managing your health. If you don't, depression sets in, and that worsens both the physical symptoms and your ability to deal with them. (Not to mention what it does to your loved ones)

FMS is one of the newer ones the doctors are mentioning in regard to me - everytime I go in there's a new name they're bringing up and as near as I can tell, they're all just words for 'some kind of auto- immune disorder', with the varieties describing a certain set of symptoms, and a lot of people having symptoms that cover more than one label.

(I've so given up - I no longer care what they want to call it, unless it means something different in regard to treatment.)

-- Lynda B (, March 29, 2001.

I am 21 and at the age of 18 I was diagnosed with Syringomyelia.

Syringomyelia (sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord. Since the spinal cord connects the brain to nerves in the extremities, this damage results in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

Its hard to be so young and have this. I take pain medication (heavy) and medicine that is given to people with epilipsy. It is to deaden some of the nerves so there is not so much pain. I try not to let it get in the way of things, but it has. I had to change my major from nursing to teaching.. Because i would never be able to lift the patients and do things that are expected of a nurse. I can't lift heavy things or strain myself. Its the small things that get in the way.

But like anything else you live with it and learn to deal.

-- Shelley (, March 29, 2001.

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