Please give me some advice: How do you cope with not having an immune system?

U

UCI PTianChem

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Joined
Mar 17, 2024
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8
Hi,
I am 40 years old, and I have come to terms with the fact that I might not make it until my 50th birthday (8 years ago I thought that about my 40th birthday).
I have Magic Johnson'd the f*ing sh*t out of this disease but I'm not winning. I let my wife divorce me years ago before we had children. I haven't told anyone in my parents' family including my siblings, but I'm sure a couple of them are suspicious that this is possibly the reality that I have kept to myself.
Now I found out I have to start taking Erythropoietin to combat anemia probably permanently and until I do I just am so tired. I had been Rx'd antibiotics so much that I became allergic to a few of them. Then about 2 years ago my allergies ceased to present; see an allergy is an auto-immune reaction, and for you to have that reaction you have to have an immune system and by that point I no longer had one.
How do you cope? I may have a 205 IQ but I can't seem to answer this question anymore. My ex-wife started contacting me again after 6 years of radio silence; she wants to see me. In fact she is doing well, she even wants me to move in with her so she can take care of me. But instead of feeling happiness I can't think of anything before that has caused me this much sadness. I mean I took care of her in the beginning, we parted amicably. Now it is a complete 180 degrees from the relationship I remember. How do you cope; how do I cope?
 
You live your life the best you can. You join support groups for people like yourself. What is your diagnosis? It’s not lack of immune system. There can be treatments, depending on what it is you are missing. Are you missing IgG, IgA, or IgM?
I’m not trying to be rude, this is something I actually know a lot about.
 
There are Facebook groups you can join, depending on your deficiency. There are groups on Inspire. You don’t mention what you have- what is your deficiency? There are treatments depending on what you’re deficient in.
I would recommend meeting others like yourself. You can learn a lot from others who have the same disorder.
 
My wife starts retuxen infusions in 2 weeks. Hysterectomy last Thursday ovaries and all. Confirmed vasculitis amd small fiber neuropothy. We believe it's what they used to call churgg Strauss. Egpa now. She had Brain legions since 2020 wink. Now has a cane and handicap parking and pain from the time she gets to till she goes to bed if she does. Shes 46.

Had mri's for 20 years due to a prednisone induced adenoma. Chicken. Or the egg I don't care about conspiracies or rabbit holes.

I'm trying to understand what you have going on. Autoimmune? Or immunodeficiency?

I've been steeping myself in potential solutions and info fron the uk, aus and nz. Some of the best doctors I can find. Self pay and some not. It's important because the self pay and concierge guys don't have to bite their tongue.

Tik-t0c had been a good resource. Barbara 0'neiL and others
 
Be your best and most vocal advocate and don't let them ignore you, don't accept waiting on call backs. I'll be right up in the office fuming being just extra enough to not get le called when I have to. The medical industry has changed. We gotta help ourselves as much as we can. It's our lives not a Doordash. I'm way beyond over it and since everybody is too busy burning books and chanting parental rights, we sure aren't addressing Healthcare or patient rights or med shortages or our system of lining pharmco pockets while people still have to use the e.r as a free-clinic perpetuating the problem. Healthcare should be a human right
 
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