Anyone here with AutoImmune disease?

[Vilas]

I think the doctors are getting close to figuring out what is going on with my body and why I'm sick all the time. One doc suggested Lupus or Rheumatoid Arthritis. Because I've been feeling like a slug all the time, I know I'm neglecting my bird at times. Of course this give him time to learn snoring and other weird sounds, while I'm asleep on the couch.

I was wondering if there was anyone here with a health issue?

[Jag]

Yes.. .I have several. I took a nasty downturn in Nov. 2005, but wasn't diagnosed until late fall/winter of 2007. I was born with immune problems, and recently found out why some of the 'tests' they did came back normal. I have an IGM deficiency, which is needed to make tests like an ANA come back positive. I have a wide spread connective tissue disease (probably Lupus or systemic Rheumatoid), as well as a handful of others including Graves. It has turned my life upside down. My heart was permenantly damaged after having back surgery in 9/07. I was undiagnosed at that time, but when I came out of surgery my heart was racing and wouldn't slow down. I had a small heart attack several months before that. They finally put me on prednisone nearly a year ago... and it's at least made my knees bearable again. However, after going into the hospital again this past April, they found fluid around my heart and some calcification of my valves and my heart is enlarging. My kidneys began getting chewed up prior to me starting the prednisone.
I'm an RN... and went back to work in ICU doing 12 hour shifts again. Let me tell you.. .there are days when all I can do is cry for the exhaustion and pain. My pharmacy bill is outrageous! I still have issues with short term memory, as I apparently had some clots 'shower' causing blood to not get to certain areas of my brain. It's amazing what you can still do while feeling like crap all the time!! Unfortunately, with my medical background, I know what my future holds. I looked at the lifespan of my conures. They have a good chance of outliving me... or we may all go about the same time. The rapid progression of the heart damage was a hard pill to swallow when I first found out. However... no one is promised a long life. I have a mission while I'm here, and I'm doing that. I have had people ask me why I'm doing the job I'm doing when I'm so sick. All I say is 'Do you want to pay my bills? Or do you think I should be at home lying in bed crying for myself?'

Still, it's nice to find others going through the same. I've had new areas of connective tissue failure, though... and if I think about it, it does bother me a little. So... I don't think about it!! If you want to discuss more I'd be more than happy to. Autoimmunes can range from an annoyance to a death sentence... but either way you can't 'unring' the bell. Hopefully your docs will be faster about diagnosing yours than mine. I also hope if they do find it's autoimmune, they will suppress you well enough to slow the damage.

[magdalena]

They don't know what I have yet but have ruled out lupus at least (or had the last time around), possibly it is MS and it's been on and off since 2000. I just got 9 (!) big vials taken for labs Monday and am back to a neurologist next Monday to start all of those tests again, the last time in 2000 they didn't find anything so suspected MS if it were to come back, which it has. MRI's are ok, spinal taps not so much. Fun fun.

I think I have been living with the random neuropathy and pain for so long it doesn't affect me, maybe I have a high pain threshold, not that I don't feel like I am climbing mountains most days but stress seems to trigger it and keeping birds has actually helped in that regard. Whatever 'it' is seems to latch onto the anxiety GABA receptors in my head (I have severe ptsd, panic disorder and agoraphobia) because if I am not on heavy anxiety meds (enough to put a bull elephant to sleep just makes me feel normal and able to go out and actually talk to people) I am curled up in a corner feeling like I am in a hostage situation the 20 hours of the day I am awake.

Hope these doctors can give me some sort of diagnosis, not knowing is the worst really. I am starting my social security disability paperwork because even though I am relatively young I worked crazy high stress, high paying jobs since I was 16 so should get at least 1500 a month now, have been out of work (except a little consulting here and there) since 2002. Thankfully medicaid is paying for all of my tests/medication or I don't know what we'd do. I am lucky my fiance is understanding and knows he may take care of me through this even if I cannot contribute financially.

Sorry you two are going through this, it is horrible. Jag, you are going through so much right now my heart bleeds to hear your health issues on top of it! :(

[birdiemommy]

So many people are undiagnosed. My rhuematologist told me that in 10 years they will be able to tell me what is wrong with me. I get chronic bursitis but I get it in matching joints, and then other joint problems. It started when I was 12, and I'm in my mid-30s now. This week my son was diagnosed with the same thing that started my problems, and he turns 12 next month.
I do have to ask something that has been on my mind.... Do any of you find your birds being really helpful when it comes to emotional/physical pain? I seem not to even notice my joint pain when I am caring for them. It has been great therapy

[magdalena]

I absolutely do. I can be busy hauling cages and moving furniture like I am a triathlete and won't even notice I shouldn't be walking at all, because it's for them. And when I'm just hanging out in the bird room stress free watching them or interacting I completely forget about any pain or anxiety. Definitely good medicine.

[usamma]

So sorry for those of you who struggle with difficult health issues. I hope you have more good days than bad days.

[Jag]

I think that it's hardest on the loved ones of those of us with chronic illness/autoimmune disease. Not only because of limitations that we may have that push more responsibility on them, but the emotional stress as well.

My fids make me happy... and happiness is a good stress reliever. I don't find it helps with pain much, but it does help with relaxation and another thing to look forward to!

usamma... did you get into that nursing program?

magdalena... don't feel bad...it has given me an insight into my patients and their families that not a lot of nurses have. Also it has made me really think about not only what I want to do with my life, but how to enjoy what I do with my life. I no longer put off things I want to do or have for 'later in life'... I do it now, because 'later' may not be there. It caused me to decide to get Rayne at that time, and my wife to get me Rico... and now the boys... friends I would have put off for many more years if it wasn't for being sick.

[Greycloud]

Ah, the magic question. My autoimmune is Crohns Disease. Absolutely horrible. It infects your entire digestive tract from mouth to bottom. I can't tell you how many endoscopeys and colonoscopeys I have had. I have rhuematoid arthritis as one of its' side effects. They have to drain my knees and elbows at least once a yr. 15 medication 3x day. Steroids, AH! I go every 8 weeks and get remicaide I.v. treatment. This helps to keep symptoms controlled. How ever the large dose I was on cause me to have medicine induced Multiple sclerosis. They dropped the dose and symptoms went away. Remacaide can cause lymphoma and tuberculosis. I have been on it for 7 yrs. I get very week and have had bowel surgery several times. I was forced to rehome several of my birds due to my sickness. I only have 2 now. I am on fulltime medical disability but my prescription plan sucks! I hope all of you find good health in the future and it's good to know we have eachother to talk to.

[hiddenagenda]

You mean aids?

[Jag]

Originally Posted by hiddenagenda

You mean aids?

No, it's not the same thing. Autoimmune diseases vary widely, but they all have one common thing, the body 'attacks' itself as if it were attacking something foreign. If you do a quick google search, you'll get more info than you want...