I Have a Disease Round 4 (sign up closed send out 10/12/09)

[guineverefree]

Mine is not rare, okay, if it turns out to be what they think it is, it's not rare but seems to be a pain to get diagnosed.

They think I have Endometreosis. I've had problems with endometrial polyps in the past but those are very easily dealt with.

If I look back I've probably had symptoms for 10 years, but everyday symptoms for two. Reading up on it, my doctors have done a lot of treating symptoms but not looking too much for the cause. I just figured I had dumb reocurring problems.

yeah, it's kind of been a long road for me but it's not rare.

[Ladycakes]

Signed up last night- my first swap, so exciting!  I have wrist pain related to carpal tunnel syndrome (yes, i wear a snazzy [ugly] brace at times), supraventricular tachycardia (annoying and scary but thankfully not damaging), and ADHD (hyperactivity, anxiety, forgetfulness, short attention span and raging insomnia).

I'm so looking forward to crafting to help someone feel better! 

[Faren]

*snort* Yeah, I think that would be enough to be getting on with!    I have Chronic Daily Headache, which means  I've had a headache for 5 years. Sometimes better, sometimes worse, but it has never totally gone away in 5 years. Because of that I also deal with depression(I think everyone with a chronic disease deals with it sometime or another!) and insomnia. Side effects include inability to think, make decisions, or deal with noise.

[babalina58]

Oh heck..while we are sharing all of it...I have Sarcoidosis in my lungs,femur bone, liver, spleen, kidney, eyes and skin ROTFL..I has surgery several years ago and now cant absorb food correct so I am on some foolish bout of IV vitamins and minerals, I am deaf in one year almost all the way now, I got fibroid in my ovary's WHY CANT THEY JUST TAKE THEM gash....I have rheum. arthritis and other things but these are the big ones...I am so grateful to have them as I look at it if I have them then someone else was spaired...I know odd but that is what gets me thought the day...
   I had a long battle to get DX..I was in the center for disease control locked in a room and told I had the Ebola virus.I was belleding from my tear ducks and other things with a 104 fever......WTF really that is the best they could do?? WOW..I had a guard and lived in a bubble room for weeks...It was not that but damn sure odd when my body would morf symptoms to something else and they would say Oh it is this and Oh it is that then MRI CT and tons of labs and 2 surgeries for that and part of my lung taken out I had a hell of a time getting my DX...Then the damn surgeon cut my main artery in my neck and thank god there was a vascular surgeon in the next OR...She cut my vocal nerve and I had to learn to speak all over again...I ended up in the hospital a total 3 months on that deal AND my lawyer blundered the case and she got away with it all....
to beat the band I asprated food into my lung because my vocal cord did not work soooo I got to stay 3 weeks in the hospital with pneumonia...that is not the bad part...I went in the day before we were to fly to Cancun...This has all been going on for the past 9 years...
Sounds like a damn movie huh...

[aada]

Sounds like a damn movie huh...

i think that too most of the time!
i say that i sound like a hypochondriac's romance novel...

[hotgluegert]

This swap is already making me feel better sometimes I feel so alone and nobody can understand the pain and the depression that can't be helped when your mind wants to do so much and here I lay crying cause my feet are on fire .... My family is great but my husband couldn't take it and left ... most of it started after a bad car accident although my diabetes has been a life long thing ...I was t boned by a young girl driving and talking on her cell phone to her boyfriend I had to be cut outta my car and broke my pelvis my hip seven ribs and there was no part of me that wasn't bruised argh this was in 2004 I had to relearn to walk and nothing seemed to heal (the diabetes) soon they diagnosed me with firbromyalgia  I think doctors use this disease as a catch all when they don't know why you hurt everywhere  . It took them 3 years to do a spinal tap and realize i had multiple sclerosis and the only reason they tested for that because i nag them to figure what to do . It really is true you are your best advocate. I think it's a bit easier after you finally get diagnosed properly ,,,, but we must go on ,,,lol,,, hope everyone has a Great night and lots a sleep !!!!!!!!!

[Velvetdragon]

Just because I didn't see anyone reply to the question, MJ had non-segmental vitiligo (vitiligo universalis) and lupus. (Recently someone said that he started wearing the glove because of the onset of vitiligo, to hide it.)

I think this is an awesome swap. My disorders are nothing on you guys, so I won't sign up for the swap, but I totally understand how it is to have an attack or flare up and just be super stressed about getting things done like a swap. I am making myself not sign up for more swaps right now because I know I'm going to be struggling in the weeks to come. I think you're awesome for arranging this and you guys are awesome for signing up.

[Songs4Drowning]

Goodmorning everyone !!!!!    well it's actually almost noon but I had one of those up down awake every hour nights too . Night sweats that leave you totally exhausted in the morning . I am trying to pack I finally gave up my home and am moving in with my daughter ...I have lived all my life in this house was actually born in this house 52 years ago my ex and I bought the family home cause my mom had the same thing as me and couldnt live alone. I am looking forward to the move but know I will cry when I leave but it's a good thing only bad part is my dog can't come they wont alllow Beagles in the place we are going . I am hoping to find him a home but not  many people love beagle the way I do . So I am praying a rescue with no kill policy will take him ... he has seizures so he is a special needs like his momma .... ouch I am babbling sorry
everyone have a GREAT Friday !!!!!!!

I'm so sorry to hear about your dog! I've had to leave behind a pet before because of a big move, and it's so hard.

Oh wow, you guys are all amazing and I'm really happy that this is helping you out. I can't even imagine trying to deal with all of that on a day to day basis. 

I just got diagnosed early in June with diabetes, and so far I'm doing alright with managing it. The doctors never came and told me anything in person but my discharge paperwork says it's type one, and I'm quite angry at my pancreas for being a lazy freeloader in my body. >:O

I've been struggling with depression since the diagnoses because I have my class A commercial driver's license. I'd been looking for local trucking work, but always had the intention of going back out over the road. I spent a few years driving cross country and it was the happiest time of my entire life, and because of legislation stating that diabetics who require insulin cannot be truck drivers, it just kind of looks like I'll never get to do that again. There isn't much support here. My friends and boyfriend try, but they really just don't get it.

[hotgluegert]

Just a quick note my ex is diabetic and an over the road truck driver you can apply for a special paper that lets you drive if you want I can ask him for the specific imformation on it . I know it took about 6 months to get the clearance but it can be done your doctor has to fill out paper work saying your well under control though ! let me know I would be more then happy to help.

[Songs4Drowning]

I had heard of that before but had also heard that it's super difficult to get the clearance, especially since I've just been hospitalized with some crazy out of control diabetes. That is really encouraging, though, that he got it! The last I'd heard only about 11 people a year actually are considered in control enough to get the waiver.