Wellness

[Noel7]

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@mistriTsquirrel wrote:

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@Noel7 wrote:

One of the hardest things for someone who has a chronic illness to deal with are people who belittle them or repeat obnoxious and untrue claims.  Ignorance hurts. Unfortunately, a lot of people seem not to care.

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Boy, isn't that the truth.  A lot of people seem to assume that whatever "your problem" is could never be their problem.

I'm sorry you have to deal with this, @Noel7.  It's not a good hand to be dealt, that's for sure.

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Thank you @mistriTsquirrel

[Trinity11]

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@Noel7 wrote:

The physical pain of AI can be severe, the pain from the ignorance of others can be even worse.

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Hi @Noel7. Lately, I visit here less and less. Nothing annoys me more than the myth that if we just go on some kind of specialized diet we suddenly will be cured. When I read a post here about how breast cancer can be prevented by eating a certain way, I decided enough already. It gets tiresome... Now a thread here is stating somehow Alzheimer's is preventable. My MIL was vegetarian, never drank or smoked and suffered greatly from Alzheimer's before it took her life. 

Hope you are doing well and your husband is on the mend..

[AlleyCat]

I have an AI condition called Behcet's.  It is very rare and there is currently no cure.  The symptoms are awful and the only options that have been presented to me are strong immunosuppresants that I am afraid of taking so I currently just live with the pain.  According to my Dr. I have a mild case so the only time I am in extreme pain is during a flare but they can last weeks.  I feel I have become either depressed or have just given up at this point.  I just don't really care about much anymore.  With Behcet's, as with many AI diseases, no one knows that you are in pain because you look fine on the outside.  What they don't realize (at least for me) is I am screaming with pain on the inside.  My mouth and throat full of ulcers to where it is excrutiating to eat or even swallow at times.  The constant fatigue, all I want to do is sleep.  The fact that there is no cure for Behcet's and knowing that I have only pain to look forward to for the rest of my life is very disheartening.  

[JaneMarple]

I'm so sorry @AlleyCat that you suffer so much from your illness. Do you belong to any support groups that have the same illness as you do? I found a few on fb that helped me realize that I'm not crazy and have legitimate concerns.  There are people from all over the world that share information, maybe this can help you get through your bad days.

All the best to you. 

[SilleeMee]

My rheumatologist once said to me that one day it will be discovered that most diseases are autoimmune in nature and that the degree to which we get sick is directly related to our very own immunity. She went on further to say that the immune system we were born with gets damaged throughout life naturally and it's our ability to heal that part that will determine how healthy we will be until the end. 

[ReggieRagu]

@Noel7

Unfortunately, she passed away at that time which I probably should have added.

She was 13 years older than me and was like a second mother. She bought me my first Barbie Doll in 1959 and it was a just because present. I could go on and on about the beautiful person she was but I won't.

At the time of her death, I was pregnant with my first child and it has always pained me that she ever got to meet my children. I gave my daughter her name as a middle name and when my daughter gave birth to her daughter she did the same. Thanks for listening

Reggie

[Noel7]

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@AlleyCat wrote:

I have an AI condition called Behcet's.  It is very rare and there is currently no cure.  The symptoms are awful and the only options that have been presented to me are strong immunosuppresants that I am afraid of taking so I currently just live with the pain.  According to my Dr. I have a mild case so the only time I am in extreme pain is during a flare but they can last weeks.  I feel I have become either depressed or have just given up at this point.  I just don't really care about much anymore.  With Behcet's, as with many AI diseases, no one knows that you are in pain because you look fine on the outside.  What they don't realize (at least for me) is I am screaming with pain on the inside.  My mouth and throat full of ulcers to where it is excrutiating to eat or even swallow at times.  The constant fatigue, all I want to do is sleep.  The fact that there is no cure for Behcet's and knowing that I have only pain to look forward to for the rest of my life is very disheartening.  

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I'm so glad you posted here @AlleyCat . I was not familiar with Behcet's so I did a little reading on the illness.  What you go through is horrendous.

I can tell you this, probably most AI includes depression, so many illnesses do.  I'm not talking about sadness, but clinical depression because of chemical changes in the brain.  I fight it often, too.

There is one basic medicine for Lupus and my body can't tolerate it so I have nothing to take. either.  I did say no to the cancer causing drugs, why trade one for another is what I think.

I hope you have a support group, family to help perhaps.

Thanks for bringing our attention to Behcet's, you will be in my thoughts.

[AlleyCat]

Yes, I did find some support groups on Facebook and they have been very helpful. It is comforting to know I am not alone in this. Thank you. <3

[JaneMarple]

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@AlleyCat wrote:
Yes, I did find some support groups on Facebook and they have been very helpful. It is comforting to know I am not alone in this. Thank you. <3

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[Noel7]

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@SilleeMee wrote:

My rheumatologist once said to me that one day it will be discovered that most diseases are autoimmune in nature and that the degree to which we get sick is directly related to our very own immunity. She went on further to say that the immune system we were born with gets damaged throughout life naturally and it's our ability to heal that part that will determine how healthy we will be until the end. 

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Hi @SilleeMee

The first SLE (Lupus) MD I had was one of the leading experts on the study of Lupus, and a research doctor. 

She told me they were sure there was a definite genetic component to Lupus.  According to her, it's actually a couple of genes that produce AI but what kind of AI plays out for each person can be different.  My grandmother had RA and my father showed signs of it.  We assume that's where it came from for me.