How do people react to your illness?

[MaryKay]

Flitz, welcome! It's half support and half rant! But better we rant in here where it's safe (Thanks Kate) then on some poor shlub who thought they were being nice. (Right Taz?)
When my sister died I had her cremated because we talked about it. I had a girl tell me she was appalled by the cremation and she "knew" what my sister wanted! needless to say I was upet...even more.
Bigeyes..I just love Karma..she often takes care of people I can't "get" myself!
Jules, The frustration must drive you crazy. My hubby has a heart and back condition. He has a hard time walking sometimes and has a handicapped sticker. We don't use it unless he is feeling bad and that seems to be more often lately. A customer of a store start a rant about us parking in handicapped, He was saying that we didn't look handicapped and we had no right taking space from a real "needy" person. I said a few rude things and grabbed Mike's hand and started walking. All I needed was for him to start fighting and fall over from a heart attact. What do you say? I wasn't going to explain why we had a sticker to a complete stranger. In Mike's younger days he would have taken that guy apart in 2 seconds, might be able to do it now but it would cost too much in pain later.

[Jules22871]

MaryKay, yeah we have the handicapped parking placard too. The only time we use it though is if it's just me and my husband (he was badly hurt in our wreck also) If one of my kids takes me, we dont' use it because they drop me off at the door. If I don't have a brace on (like I'm supposed too,lol ) unless you notice my leg is on crooked you would never know I was handicapped. I have had people try to make me get off the wheelchair before while I was waiting for whoever brought me to go and park our truck. It can become quite a scene if you let it get to you. My whole family, including my little Corgi, are very protective of me,lol I try to just smile and think like you do, that karma is something you can run from for only so long.

[Kate51]

They are kinda starting to think about maybe possibly coming to a conclusion of it being autoimmune. If they ever decide on that, it would be great. There have been a few docs out there that have given immunosuppresants with great results. However, I have only read about that happening maybe twice.

Just a note about immunosupressants: Careful here. I have Rheumatoid Arthritis. I almost started a string of treatment with them until I saw a lady sitting in the waiting room with RA soooo bad. She was getting the "treatments", but just came downstairs from the hospital to the clinic, where she had been in for SEVEN weeks for double antibiotic-resistant pneumonia. I've already had that 4 times in 12 years.
Oh, yes, she said, that's one of the side effects. I went back in and asked the Doc, what about this. WEEEEELLLL, there are side effects, but we usually have to treat any symptoms as they come up. ??????????????
Also, by the way, it was NOT helping her RA one bit, not at all. It won't ever go away, maybe just slow down the progression. What a crazy world this is. The cure can be more dangerous than the disease. I just said forget it and went home. 2 Ibuprofin 3 times a day, for 6 weeks, then six off. Let's just say I'm in pretty good shape most of the time, but progressing it is! That office call cost me a mint, but I give that over to learning a good lesson. Some of these Docs I think just like to "practice"! I'll go back when they get it right!

[taz3cat]

Kate51, i bet that woman was taking Methotraxate (may be spelled wrong), that stuff damages lungs big time.smokers or ex-smoker should not take the stuff. You have to go into the National Libary of Medicine or Pubmed to the the facts about some drugs. They use thet drug for RA because they say it has less side effect than cortisone (carp).

Some of you may want to conceder a pneumonia shot. I got one, even thou I am slightly allergic to eggs. No dubble pneumonia for me. Bactrial pneumonia may do me in.

[deliza]

I have ankylosing Spondylitis, and have taken methotrexate, in conjunction with biologics (humira and enbrel) in the past. While I would never argue that these drugs should be taken likely, I would point out that when you are actively flaring your immune system is not functioning properly to keep infections at bay either. I was actually sick more often before I was on those meds, than during them. My understanding was that my system was exhausting itself attacking my body and therefore couldn't fight things off. It was actually life changing treatment for me. It is a very personal decision to be sure, and definately not without risk, but I wouldn't change my choice to take them for anything. I am not on anything now, because I had a spontaneous remission for several months. Things are flaring up again, but I am trying to be stubborn

To go back to the original purpose of the thread, I hate, hate, hate, when I have to tell someone what AS is, and I get "oh, I pulled my back last month, I'ts kinda like that right" while wearing a so whats the big deal expression. I just want to go well other than my spine destroying itself from the inside out and the fact that my vertebrae (SP?) will fuse together over time, and that sometimes I can't walk because my sacroilliac joints are so inflamed, oh and yea, the fact that sometimes just for fun it attacks my eyeball as well, yea, its just like that. Geez.... I kinda just went off on a rant, I guess thats part of why I don't talk about it too much, I end up sounding like a crybaby!

[Kimpetuous]

Originally Posted by bigeyes

OMG, that's infuriating, isn't it? I get those horrible puking migraines, and I just love it when someone gives me the old 'it's just a headache' line.

Seriously? You try going about a normal day when you're hugging the toilet with dry heaves and giving serious thought to shooting yourself because it's the only thing that will make your head stop hurting.

I really wish stupidity was painful.

I get puking migraines too and I love it when people tell me THEY have a migraine (like at work) and all I can think is "You wouldn't be sitting there eating Doritos and playing BeJeweled if you had a migraine!!"

I really should learn to be more tolerant.

[DebiDoes2]

Hi All,

I hope I'm in the right place. I am bi-polar, diabetic, have COPD and a few more ailments. I saw the vote post on the main forum and didn't even know you all were here. Mind if I come in and sit awhile?

[Silver]

Hi DebiDoes2 and welcome to Wrecked & Bonkers ! We're all just a bit... well... wrecked and bonkers in here , so put your feet up, have a tea/coffee and some biccies and by all means, join in !

Cheers,
Silver

[DebiDoes2]

Thanks Silver

[Kate51]

Originally Posted by taz3cat

Kate51, i bet that woman was taking Methotraxate (may be spelled wrong), that stuff damages lungs big time.smokers or ex-smoker should not take the stuff. You have to go into the National Libary of Medicine or Pubmed to the the facts about some drugs. They use thet drug for RA because they say it has less side effect than cortisone (carp).

Some of you may want to conceder a pneumonia shot. I got one, even thou I am slightly allergic to eggs. No dubble pneumonia for me. Bactrial pneumonia may do me in.

Am not sure any more what it was, she was in trouble though......the pneumonia shot is a must!!!!
I have had a little breath shortness the last week or so, which went away right away after I started vaping, so am a little edgy about it...could be the hot humid weather is having effect as well (this is the first week for that this year. Coincidence?) Allergies also kick in a bit, but not nearly to the level it was while smoking. This is going to be an interesting summer, keeping a mental note on how our bodies react, whether differently or not with vaping. Still get relief with one occasional Primatine tablet, that is still OTC. Very small dose ephedrin gets me back on track. Deep pursed-lip breathing several times a day very helpful! Don't forget this exercise just because you feel better, keep it up.