How do people react to your illness?

[Mary Kay]

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]

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]

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.

 

[Mary Kay]

Debi, Welcome! Please feel free to move about the plane..wait! Wrong greeting! Anyway as you can see, we are pleased to have you here.

 

[DebiDoes2]

Thanks Mary Kay. Ummmm, the question is "How do people react to your illness?"

They think oh no she's nuts!! And I tell them yes I am, I am certified!!

 

[Jules22871]

Thanks Mary Kay. Ummmm, the question is "How do people react to your illness?"

They think oh no she's nuts!! And I tell them yes I am, I am certified!!

Hi Debi and welcome to the nuthouse! When people question my mental health I just tell them I have papers, I'm registered,lol

 

[Bunni]

Hi all,

I'm new here too. Found this discussion in Today's posts, and was like wow, now there's a group for me!! I'm a little concerned about posting this as my first post, but I guess this is the discussion!

I have depression (medication resistant), arthritis, and fibromyalgia. It's the last one that really does me in on reactions. I was diagnosed with FM in 1991, and since then have heard about all the well-meaning advice, snake oil, and alternative therapy known to man. I have weight issues as well...same thing...they think I have food in my mouth all the time when in fact, I forget to eat! I have symptoms of thyroid issues as well, but my TSH falls within range so my Doc won't treat me.

I had a wonderful rheumatologist once who was very supportive, gave me medication as I needed it, didn't treat me like an addict. When he died, my Primary care doc told me not to worry and that he'd take care of whatever I needed. When I ran out of pain meds, and asked my primary doc for a prescription, he said: " I never told you I'd give you pain medication! " Only thing that changed was the other doc died, I was still in pain. I guess when he died I should have gotten better! This same doc told me I needed to lose weight, come back and see me in two weeks...I came back and he said, I thought I told you to lose weight!

My mother-in-law gives everyone self-help books for Christmas presents. She has a field day with me.

As of late I've had alot of edema in my legs which led to a nasty bout of venous stasis. I also get recurring cellulitis in my legs. I'm kinda falling apart.

My family has to help around the house alot, and I often have to miss doing things with them, like the party my husband is at right now. I was stung by something yesterday, naturally my leg. It's red, hot and swollen and I have a fever...sigh. It will either get better, or I'll need antibiotics again. Regardless I couldn't go out. I'll miss going with him to a family dinner tomorrow night as well. My mother in law upon hearing this, started to advise me on what I should eat to lose weight. *cry*

I sorta just feel like I live a parrallel life to everyone else; I'm watching friends and family go about there business..I do what I can for them so they can do that, but I get left in the dust.

Hugs to all fellow sufferers!

Bunni

 

[Mary Kay]

Bunni, Welcome, I seem to be saying that to you a lot today..lol!
You need to kick that doc to the curb! You deserve better.

You sound like you have some serious problems, I bet one aggravates the other. Just deal with it one thing at a time and do look for a good Dr.!

Your Mother in Law sounds like she could use a muzzle. Maybe your hubby could talk to her about "helping" so much. If not find something you can advise her about.

 

[Bunni]

The old doc is long gone, I have a new one now, but no medical insurance so I pick my battles. You're right, one does aggravate the other.

My mother-in-law really is a sweet lady, and I know she is only trying to help. But honestly ya gotta wonder why would people ever think any of us would choose to be sick, in pain, or disabled if we had a choice.

Hugs and thanks for the welcome

Bunni

 

[tescela]

I have symptoms of thyroid issues as well, but my TSH falls within range so my Doc won't treat me.

Welcome, Bunni!

Thyroid test that is normal should not -- by itself -- lead to the conclusion that thyroid function is not problematic. Do some online research on the thyroid blood test methodology, and you will understand why. You might want to print out some of what you find and take it to your doctor with the key points highlighted.

 

[Bunni]

Yup, I know, and i have been reading. I just can't waste to much time with the Doc because I don't have insurance and it costs me to see her. I'm fulla symptoms, but the symptoms overlap with other stuff like the fibro. It makes things very convoluted and hard to get a doc to understand that no, this is different. She is new to me too..which is always hellish; trying to explain to and educate a new doc is just so frustrating.

 

[Jules22871]

An Open Letter To Those Without Invisible Disability Or Chronic Illness …

 

[DebiDoes2]

Thank you Jules. That was perfect