1. < Autoimmune Diseases

there is no hope for me

Posted by ariza9110 @ariza9110, Jun 17 5:37am

so 4 years ago i lived in a moldy place and since then to this day i developed hypersenstivity to mold, where as a reaction to it i get brain fog, this condition is chronic, debilitating and constant, and the worst part is that medicine doesnt recognises it and there isnt enough reaserch about it so im litearlly doomed to suffer, i cant see myself living my whole life with this brain fog because of it, i also have other health conditions and baisically i suffer all day everyday but with this problem it is the worst because i know you cant get better, the only "treatments" out there i found where psuedoscientific quakeris about "detox" i better be dead at this point than keep living misrebaly with all my chronic illnesses (which this one is the worst since theres no treatment)

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kobe2026 | @kobe2026 | 1 day ago
In reply to @jw9 "What I see here is how people living with disabling chronic illness have learned to cope..." + (show)
@jw9

What I see here is how people living with disabling chronic illness have learned to cope by changing their perceptions, their health regimen. @ariza9110 I would like to share that I became ill when I was 31 and now I'm 67. I can tell you that I had extreme chemical sensitivities when I was in my 30's. In addition to 4 autoimmune illnesses, I had cancer. I lived in an old apartment with terrible black mold while going through radiation treatments.
Here's what I've experienced; brain fog was initially very difficult, but it didn't last. I had gluten sensitivities and was gluten free for 10 years, then that cleared up also. I have 3 decades of dealing with chronic problems that I learned (somehow!) to cope with, then things change.

I understand feeling hopeless. But following suggestions by folks here sounds like a good place to start. My feeling is there have been symptoms coming and going , the most important thing for me has been creativity. People are creative with their approach to their illness, they are learning natural medicine to help others (@rainerhans). I became a certified chair yoga therapist because I couldn't find a good yoga therapist when I moved here. Now I offer free classes for seniors and the disabled.

When I turned 60 and realized half my life I've been disabled, I was very surprised to learn that if I had to do it all over again, I wouldn't change a thing. I've become a published poet in this time. I love the natural world. I love baseball...

Find even one thing a day that brings you joy. That's how I got through my depression in those first 10 years. Gradually, I looked forward to that one thing and built on it. Even with illness we can have passions for love, joy and creativity.

This is hard won advice.

Jump to this post

VERY TRUE MINDSET IS THE MOST IMPORTANT FACTOR IN YOUR TREATMENT.

DIAGNOSED IN 2021 WITH CLL/SML DID TREATMENT AND IN 6/2022 DECLARED IN REMISSION PHASE
HAD A PET LAST SATURDAY AND IT SEEMS IT'S COME BACK, I'LL FIND OUT TOMORROW WHEN I SPEAK TO DOCTOR.

SHIT HAPPENS

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1 reply
jw9 | @jw9 | 1 day ago
In reply to @kobe2026 "VERY TRUE MINDSET IS THE MOST IMPORTANT FACTOR IN YOUR TREATMENT. DIAGNOSED IN 2021 WITH CLL/SML..." + (show)
@kobe2026

VERY TRUE MINDSET IS THE MOST IMPORTANT FACTOR IN YOUR TREATMENT.

DIAGNOSED IN 2021 WITH CLL/SML DID TREATMENT AND IN 6/2022 DECLARED IN REMISSION PHASE
HAD A PET LAST SATURDAY AND IT SEEMS IT'S COME BACK, I'LL FIND OUT TOMORROW WHEN I SPEAK TO DOCTOR.

SHIT HAPPENS

Jump to this post

@kobe2026
That's a reality check! Shit happens... Hope your remission continues and let us know how you're doing after the PET results are back.

REPLY
kobe2026 | @kobe2026 | 13 hours ago

Just got off phone with my doctor, CLL/SLL is returning again, remission started 6/22. Latest Pet scan shows returning lymph activity. At present it's not super serious but starting with Zanubruntinib after genetic blood test,
thank God not infusions this time around.

ONWARD

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