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

UCI PTianChem

Member
Joined
Mar 17, 2024
Messages
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
 
Last edited:
Drugbuyersguide Shoutbox
  1. M @ Mokachin0: @hotdog45 check your pms, thanks for your uplifting comment here, prize details in dm!
  2. T @ timyboy: Good Day!
  3. O @ oh be g: xenxra u know way more than me, why so ocnfident?
  4. T @ TheAZMan: @AaronRag sent. Thank you.
  5. A @ Aarfgh: @TheAZMan email admins using contact us button on bottom and ask, if you donated
  6. T @ TheAZMan: Who do I get the password protected forum login info?
  7. xenxra @ xenxra: monero is going to $700 in two-ish months. screenshot this as well.
  8. H @ hotdog45: Just wanted to send some love to everyone on this board. You guys have helped me through some difficult times and continue to. Thank you to everyone
  9. Strawhat7 @ Strawhat7: @xenxra got it! I figured as much but was strange that I could literally find no evidence that he was ever on here lol thought I was going nuts!
  10. xenxra @ xenxra: @Strawhat7 yeah he stopped sending out mags like last november or something iirc
  11. MOD @ MOD: Hi All
  12. LW815 @ LW815: @Mycawesome gotta be proactive(aka fiscally irresponsible[borderline retarded]) and way overstock the library. While the preferred genre may not always be in stock always sure to have sub-genres or at the very least another genre to stay entertained while awaiting the next edition of the favorites.
  13. T @ timyboy: Happppy 4th!!
  14. T @ timyboy: Good day ya'll!!!
  15. Mycawesome @ Mycawesome: @tiquanunderwood yeah you're right. Also its my falut I should have seen this and made contacts sooner. I remembered at the last minute on sunday to put in with everyone. So i have only myself to blame... I was hoping for some Kelloggs to eat during the fireworks show. Oh well ill just take a rest day and watch some monty python from a deep hole ha im my bed
  16. Mycawesome @ Mycawesome: Edit error
  17. Mycawesome @ Mycawesome: Government holidays are such a pain my ass. Everything takes twice as long...
  18. tiquanunderwood @ tiquanunderwood: Yessir. It's a bummer.
  19. Mycawesome @ Mycawesome: Government holidays are such a pain my ass. Everything takes twice as long...
  20. tiquanunderwood @ tiquanunderwood: sry i know we all go through this to varying degrees, but we all need some llove! <3
Back
Top