How do people react to your illness?

[planetofthevapes]

Originally Posted by seminolewind

Planetofthevapes, I hear you. It's a sad thing, and I hope it goes away for you. I'm sure you've tried everything including coal tar. Just like some people don't understand chronic vs acute, they don't even understand that you saw doctors and they couldn't do anything because docs cure everything and save all lives.

Are there things that exaserbate your condition, like stress or worry or weather?

Seminole...wouldn't you know it that coal tar is helpful when the going gets rough. Of course, the best kind is denorex (the put cooling ingedients in it and it really feel very nice) but I cant get it around here, I can only get the wal-mart brand coal tar, it doesn't foam very well and is hard to get good coverage. My husband doesn't like the smell and sincit alone isn't all that effective, I only useit on really bad days. Actually nothing in itself setsit off, more like everything does, even water. Its wors in stressful situations, but it's always there and it's usually pretty bad, night is the worst mostly because my meds wear off about then.

I can't imagine how horrible those cluster head aches must feel! I wouldn't be able to cope. A tiny 5 minute headache will send me to bed...so those really piercing ones...oh I just can't even imagine! Hope they find something to help (I can't recall who said hey have those and my comp is being a pain, the keyboard is going out and my internet connection is the pits in this room). Hell, I just wish we could all be cured of our ailments. Do you ever sit back and wonder "why me?". I'm not saying I'm a great person, but I have a pretty big heart and I try to get along with everybody...and I can thinkof at least 10 other people that deserve an ailment such as ours more than we do! Though if I had to personally go and hand the ailment over, of course I wouldn't!

-Sue

[seminolewind]

Planet, LOL, I remember an old friend of mine who had psoriosis, and used coal tar when it was real bad, I guess I said that because on reading your post, I thought of you. You would think that they could come up with something for you.

[planetofthevapes]

Originally Posted by seminolewind

Planet, LOL, I remember an old friend of mine who had psoriosis, and used coal tar when it was real bad, I guess I said that because on reading your post, I thought of you. You would think that they could come up with something for you.

Well, even though nothing is really known about it, i have noticed more info in the last month or so just pop up. 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. I would hope that when the year renews and we are willing to start searching for answers again (because we will start at the BEGINNING of the year with our $3000 deductible, so that we don't pay that all out in vain just for a new year to start)...maybe I can find a doc that will give me some. I know they are dangerous, but I gotta tell ya, I'm willing to take that risk. I fantasize that I could take them for a couple of months then wean off and reboot my immune system...like a computer. I know that is probably impossible, but hey, we all dream right?

[taz3cat]

Marykay, i know how mad these doctor can make a person. You can even tell them what is wrong with you and they will ignore you until your almost dead. I have met a few nurses just like the one you did.

I get situational diabetes when I am real sick. they gave me a medication for diabetes that made me crave sugar, now can that be helpful to a person. I have never craved sugar in my live. I have aways liked salty foods best. I am still getting over the sugar craving but the diabetes is gone.

Marykay, I hope you have found a doctor that is helping you now.

Bigeyes, You don't have to look sick to be sick.

I don't drink, and I read one report by one doctor that I was a heavy drinker.

Planet, the doctors act like predisone is worse that illigal drugs. Methotraxtate is worse.

[MaryKay]

My Dr. and I are butting heads right now. I want HRT and she doesn't want to give it to me. I will go to the street corner and get my fix if I have to!
But other then that all is well. Thanks

[bigeyes]

Originally Posted by taz3cat

Bigeyes, You don't have to look sick to be sick.

I don't drink, and I read one report by one doctor that I was a heavy drinker.

Don't I know it.

I had one doctor accuse me of taking drugs to try to make myself sick. I wanted to punch her. Now I comfort myself with the knowledge she was pregnant with her first child and many women come down with thyroid disorders after childbirth. Karma's a bitch.

[Jules22871]

I was in a bad motorcycle accident almost 5 years ago. I came home from the hospital with an external fixator on my knee along with a huge splint on my lower leg, no casts, to many open wounds and incisions to be put in cast of any kind. The first thing someone would say is "Did you break your foot?" I can't walk without crutches, and I hear this one all the time "I was on crutches for 6 weeks when I stubbed my toe so I know just how you feel." They have no idea how I feel. I have been on crutches for almost 5 years now and I will never get off them. How dare they think they know how I feel.

If I don't wear my knee brace and my AFO brace for my drop foot when I go shopping, I get the most awful stares from people since I don't "look" like I need to be in the electric wheelchair. People honestly have no clue what another person is going thru. I wish that I would never here the " I know how you feel" mantra ever again.

Here is a something that I found very interesting and I often refer people to it when they question me about what I'm going thru

http://www.butyoudontlooksick.com/na...poonTheory.pdf

[Flitzanu]

wow, i'm going to have to come back and read these closer!

i can't really say that i'm "bad off" with anything, but i wanted to throw out a few thing that i have that are unusual

as with a lot of people, i do tend to have stress, GAD, and depression, and bounce back and forth on meds.

i have a malformed ribcage, my ribs are grown downward at an angle instead of vertically.

it's strongly believed i have Osteogenesis Imperfecta (my older brother DOES have it), i break ribs by being hugged. i'll have to tell my arm breaking story later.

i've had my tonsils removed twice (yeah, grew back...inconsequential really, but no one believes me)

i have Sleep Paralysis.

i have as spasmatic esophagus. really just an annoyance, sometimes i can't voluntarily swallow while drinking because my throat doesn't want to cooperate.

but otherwise, i know it isn't a comparison, but i don't have anything to make me that unhealthy, so i don't want anyone thinking i'm comparing or belittling.

[taz3cat]

Flitzanu, this thread is about illness, so we expect to talk about your and ours. Glad you feel your doing ok.

Julis22874, even if I had the same problem as you do I still would not know how you feel because mine may be better or worse than yours. We're unique individuals and our illness are not always exactly the same.

One other problem, I am not you. I can only see the world threw my own eyes.

I will say that most people mean well by what they say. Some times their well meaning words hurt. When my child died, welling meaning people told me all kinds of kind (they thought) things, they were not bad people, just people that had not been there, done that.

[Jules22871]

Originally Posted by taz3cat

Flitzanu, this thread is about illness, so we expect to talk about your and ours. Glad you feel your doing ok.

Julis22874, even if I had the same problem as you do I still would not know how you feel because mine may be better or worse than yours. We're unique individuals and our illness are not always exactly the same.

One other problem, I am not you. I can only see the world threw my own eyes.

I will say that most people mean well by what they say. Some times their well meaning words hurt. When my child died, welling meaning people told me all kinds of kind (they thought) things, they were not bad people, just people that had not been there, done that.

Taz, that is very good advice you have given to all of us. I usually don't sound so bitter about it. Most times it doesn't bother me at all. I've never said anything back to people because I know that any pain that anyone else has felt cannot and should not be compared to mine. Like you said, we are all different. I have a very dear friend that has a problem with her neck and she is always saying "it can't compare to what you've been thru" I have to tell her to never minimize what she is feeling because you think what I've had happen is worse. Pain is not something to be trivialized. There is no such thing as good pain.

The one thing this has taught me to never say to someone is " I know just how you feel" I can't possibly know how anyone feels. Thank you for your very wise words