More on Auto Immune - Page 3

Noel7 · ‎03-09-2010

@ReggieRagu wrote:
@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

Oh @ReggieRagu , I was hoping she'd made it, I am so sorry, and for her family, you and her children

JaneMarple · ‎05-23-2011

How right you are @Noel7 concerning depression, I went through it as I'm sure all of you suffering have also. There's so much information that I would love to share and get updated news as well from you all who suffer.

You Don't Own Me- Leslie Gore
(You don't Know) How Glad I Am- Nancy Wilson

Noel7 · ‎03-09-2010

@JaneMarple wrote:
How right you are @Noel7 concerning depression, I went through it as I'm sure all of you suffering have also. There's so much information that I would love to share and get updated news as well from you all who suffer.

@JaneMarple

The depression can be crushing, but it sure is nice to know there are kind other people who understand the struggle.

Noel7 · ‎03-09-2010

@Trinity11 wrote:
@Noel7 wrote:
The physical pain of AI can be severe, the pain from the ignorance of others can be even worse.
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..

@Trinity11

I hear you, my friend. I get angry about it, also. It seems to come from people without a basic understanding of science, DNA in particular. They are looking for a simplistic answer or cure when there most likely is none.

Iluvlucy · ‎03-09-2010

Hi Noel, I "talked" to you a few times years ago! I coud write the book on this, unfortunately. I have Mast Cell Activation Disorder, almost died in January and May(nose swelled shut and throat was closing too)...I live with that possibility every single day and don't even know all my triggers..and they can change on a daily basis. Doctors told me not to even go to a different floor of our house without my epi-pen in hand.

Basically, my immune system is too good(doctors told me I'm too healthy, which is now threatening my life)..lol. It's over reactive...my cells are always releasing histamine, amongst other things..but too much, they never settle down. So my body takes many things as a foreign object that it needs to attack...hence the anaphylactic shock. The cells can also attack your joints, organs, etc. My blood pressure also goes very low...passed out and it was still 50 over 30 when ambulance got me to the hospital.

My son has UC really bad...and I mean really bad. He would die without his meds, but his meds will also eventually kill him. His illness has about killed me...and many people don't get it. He's almost died twice, and I mean to the point where the doctor said, "We might not make it through the night". Being his caregiver after long hospital stays have been some of the darkest days of my life, seeing him so sick and hardly able to walk. He was 20 lbs underweight, his kidneys had shut down...the week he was discharged he had 6 follow-up appts with cardiologist, endocrinologist, etc...because his organs were shutting down and had all been affected...no way could he have driven himself, it was all he could do to shower and even then, I waited out in the hallway to hear a big "thud", so afraid he was going to pass out in there. And someone asked my why I still needed to stay there since he was "out of the hospital". Some people just can't "get it" unless they go through it.

He was just in another flare again, had his infusion on Friday, was just feeling better from that, and now yesterday he's getting sick(bad sore throat) because he takes a daily immunosuppressant on top of his infusion, so his immune system is so suppressed, it makes him not able to fight other stuff off.

I don't even tell most people how bad it's been for me because I know they don't get it...they think I just have allergies. And, no, I really don't have allergies, it isn't that at all, my reactions are allergic in nature. But when it comes to my son, that child is as strong as they come. He's been through hell and back more than once. This isn't something they can give medicine to or do a surgery to "fix"...he's going to live with this for the rest of his life and even he knows he won't live real long. Our lives are forever changed because of it, and it's never going away.

No, people don't understand at all how bad it can be to "live" with these diseases. Mine isn't a "disease" per-say, but it sure is a pain in the rear and a lot to deal with. I can't barely walk during a bad flare, on top of head to toe welts, joint pain, muscles ache, can't breath, etc.

All this to say, I get what you're saying...lol! I'm in a group on FB and they complain all the time about it. One lady said she had Stage 3C breast cancer and living with this was WAY worse than what she went through with that...but friends and family were much better through the cancer and say the stupidest things about this. The other night she said, "With cancer, I was afraid I was going to die...With this, I want to die". That's a pretty big statement.

happycat · ‎09-18-2010

My heart goes out to all of you who are suffering with these horrible and scary AI diseases. You ladies are strong and curageous, and I appreciate your willingness to attempt to educate those of us who are not familiar with all these AI diseases.

haddon9 · ‎03-09-2010

@Noel7 I agree with you.. For some reason many really don't understand the seriousness of some autoimmune illnesses and make inappropiate comments. When my husband first came down with his rare illness I had a friend say to me..."ask least it's not cancer"..Excuse me? He almost died from his illness and though he's better now than back in 2012 when he first got really sick it is a daily struggle and I never know if he will go backwards again or even submit to the horrible disease!

This illness has become a part of our daily lives...it's NOT fun!

Noel7 · ‎03-09-2010

@Iluvlucy

Hello! It's good to hear from you again 😊

Your disorder sounds a lot like Lupus, attacking body organs and joints, I know how terrible that is for you, and how much worse it is as a mother to see your son suffering. My husband or daughter also stays with me when I am in the shower during a flare.

You've taken the time to explain what you and your son are going through and I understand. You are an incredibly brave woman, and your son is also brave.

I also have an issue with my throat closing. I've come close to not surviving a cold twice. The first time was a serious asthma attack and pneumonia as a reaction. The second time was an ER trip with my throat shutting down... terrifying. My MD team tells me to stay away from cold and flu germs, but then we are called names like "germaphobes" and ridiculed by people who have no clue what they are talking about. I cannot believe the ignorance and cruelty.

So good to hear from you, I wish you and your son the very best.

Noel

Noel7 · ‎03-09-2010

@happycat wrote:
My heart goes out to all of you who are suffering with these horrible and scary AI diseases. You ladies are strong and curageous, and I appreciate your willingness to attempt to educate those of us who are not familiar with all these AI diseases.

Thank you @happycat

You are very kind.

Trinity11 · ‎11-16-2014

@Noel7 wrote:
@Iluvlucy

Hello! It's good to hear from you again 😊

Your disorder sounds a lot like Lupus, attacking body organs and joints, I know how terrible that is for you, and how much worse it is as a mother to see your son suffering. My husband or daughter also stays with me when I am in the shower during a flare.

You've taken the time to explain what you and your son are going through and I understand. You are an incredibly brave woman, and your son is also brave.

I also have an issue with my throat closing. I've come close to not surviving a cold twice. The first time was a serious asthma attack and pneumonia as a reaction. The second time was an ER trip with my throat shutting down... terrifying. My MD team tells me to stay away from cold and flu germs, but then we are called names like "germaphobes" and ridiculed by people who have no clue what they are talking about. I cannot believe the ignorance and cruelty.

So good to hear from you, I wish you and your son the very best.

Noel

@Noel7....Good Morning. Yes, that germaphobe thread I wrote a long response to and thought what the heck.. the OP was in denial and that was her middle finger to all of us who need to be more vigilant. Then the responses that followed made me just not post. You cannot change the mind of people like that. They are ignorant.