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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  1. st1ckyf1ng4z @ st1ckyf1ng4z: @eswen444 might be a little more difficult and involve a little more planning, as well as price increases on certain items, but all of those will still be available, trust.
  2. st1ckyf1ng4z @ st1ckyf1ng4z: @MorfineOrfan i’m sure they made good money off of it and took the shit off the shelves, but I bet you it’s still available if you ask for it upon request especially if they know your regular buyer. I, like you, just bought kilos online to save money back in the day. I would only buy your shit from the smoke shops if I was that desperate.
  3. st1ckyf1ng4z @ st1ckyf1ng4z: @MorfineOrfan like I said before I’m a recovering opiate addict so I choose not to touch the shit at all but I’ve been to smoke shops because I buy disposable vape products and other accessories, but every smoke shop I’ve been to over the last few years have had kratom “front and center” and easy to see. About 2/3 years ago 7oh products began appearing and it got completely out of control. I remember telling one of the owners of my regular shop that 7oh it’s not gonna end well
  4. E @ eswen444: *or post here. Holy spelling problems....but also for everyones info what im told is as of 8/1/2026 7oh, MIT, MGM, and other concentrates will be scheduled 1. Its an emergency schedule which lasts TWO YEARS and they can request an additional if needed. I feel horrible for all the homie/homettes who have to deal with this.
  5. E @ eswen444: @MorfineOrfan do you have a link to the chems the DEA blans to emergency schedule? If so please pm it to me or lost here. From what im told from my corporate over seers everything BUT raw leaf, and capsuled leaf will be removed from shelves 7/31/26
  6. MorfineOrfan @ MorfineOrfan: We made it to another Friday ladies and gents. Hope everyone has a wonderful weekend, be safe out there.
  7. MorfineOrfan @ MorfineOrfan: @st1ckyf1ng4z i have no clue what the supply and demand is like for brick and mortar shops, i havnt been in a smokeshope in 15-20years and back then none of them had or even knew what kratom was. Ive always bought kratom from vendors online, back in tge day we would use babel fish translator to haggle with vendors on kilo prices lol. But you dont need to worry mit will always be available if leaf is.
  8. MorfineOrfan @ MorfineOrfan: @nameofuser11 its not just 7/mgm/psuedo and sr, the dea has a huge list of compounds its banning with this ban. Odsmt is one, all the orphines and a ton more.
  9. MrFuszy @ MrFuszy: Lole onion sites?
  10. MrFuszy @ MrFuszy: @eiffraffca what ya mean
  11. R @ Riffraffca: Has anyone used and markets on the Dark Web?
  12. st1ckyf1ng4z @ st1ckyf1ng4z: @nameofuser11 Lol, happens to the best of us my friend. I think plain leaf will remain pretty easy to access, and prices shouldn’t fluctuate too much. Read up on how to use btc if you don’t know already. It’s not rocket science :)
  13. nameofuser11 @ nameofuser11: I donated and I forgot how to get the password. I am a moron. Don't worry I have no plans on becoming a vendor with my stupidity
  14. nameofuser11 @ nameofuser11: @st1ckyf1ng4z you're right of course. But being able to purchase with a debit card on a clearnet site with quality labs and low prices will be gone.
  15. st1ckyf1ng4z @ st1ckyf1ng4z: Especially if they’re using mitragynine as the parent alk to make substitutes. I think it will affect plain leaf too at the very least it will not be as available as it’s been.
  16. st1ckyf1ng4z @ st1ckyf1ng4z: @MorfineOrfan @nameofuser11 That’s wild. But basic supply/demand tho, right? In my area all the leaf has been pulled off shelves,
  17. J @ j00ciiez: It sucks they're banning sr17. It seems to be a holy grail for many ppl.
  18. nameofuser11 @ nameofuser11: To clarify plain leaf kratom is not a part of this ban. Mitragynine might be fine. 7, psuedo,mgm15 and sr1708 are what are on the table to be banned most likely but hopefully just regulated.
  19. MorfineOrfan @ MorfineOrfan: @st1ckyf1ng4z and yes , there are already indole alkoloids with tweaked scaffolding ready to take the place of 7/mgm, all with mitragynine as their parent alkoloid. The game of wack a mole starts the minute 7 is officially banned. Its 2013 K2 all over
  20. st1ckyf1ng4z @ st1ckyf1ng4z: @MorfineOrfan Also, it’s just a matter of time before another alternative pops up on the market anyway….
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