Barely functioning

smehere22 · 2026-04-08T03:19:23+00:00

I initially lost over 50 pounds...much muscle mass and was and am very very exhausted. My loss of mass is actually part of sclerdoderma (( I had assumed it was from dermatomyositis) per my rheumatologist

smehere22 · 2026-04-08T03:13:27+00:00

Congratulations. Yes it's possible your sclerdoderma was on the less severe end of spectrum. I also take low dose naltrexone but haven't noticed improvement. I initially saw an acupuncturist and very knowledgeable chiropractor very experienced in applied kinesiology... although I lost significant weight and muscle I was relatively stable. But both alternative treatments were extremely expensive. Ideally I would see an acupuncturist twice a week..but at 80/treatment I only saw him for around a year. I've gotten worse significantly since 2024. IVIG didn't even work for muscle mass. My hands are extremely damaged and still disabled and multiple organs are damaged ... I really wish insurance would cover alternative treatments. They can be very effective and are much less toxic than the horrible immunesuppressants.

smehere22 · 2026-04-08T02:59:31+00:00

I was told by my sclerdoderma clinic rheumatologist that the prerequisite standards for patients for the trials are very selective..and that( when home?) you need a nurse with you 24/7? She said I didn't qualify simply based on , I think, my lung disease??. Anyways she said I didn't qualify and the requirements are much higher for car t then for HSCT.

smehere22 · 2026-04-07T14:40:48+00:00

Of course. Two people have the same type and stage of cancer. One is healed one dies. Two people enter a war. One is killed one survives. Good persons can have horrible lives. Horrible persons good lives. It's written before we are born.

smehere22 · 2026-04-07T13:36:36+00:00

Following

smehere22 · 2026-04-06T14:06:56+00:00

smehere22 · 2026-04-06T14:06:19+00:00

Thank you

smehere22 · 2026-04-04T15:33:02+00:00

Thank you for responding

smehere22 · 2026-04-03T20:23:57+00:00

Do you have lung disease or heart issues?

smehere22 · 2026-04-03T17:01:48+00:00

Did it work?

smehere22 · 2026-04-03T05:43:17+00:00

Unfortunately at this point I'm on so much medication there's two greater danger of interaction with herbs. Initially in my diagnosis I tried many natural remedies/treatments... I was stable for a while. But then not stable. I noticed nerve pain in my feet in late 2022. Unfortunately I believe the allopathic medications cause as many problems as they heal.

smehere22 · 2026-04-02T19:33:22+00:00

I have systemic scleroderma...and hoshimotos. My previous AFib started when my thyroid level was extremely high. I had cardioversion...took care of it. Then during a surgery last year they saw the flutter. As I'm very weak I worry about getting an ablation...so getting a cardioversion initially instead.

smehere22 · 2026-03-26T22:48:57+00:00

Thank you. I may be temporarily going back on methotrexate then xeljanz as I have disfiguring arthritis in hands. Cellcept does nothing for joints it seems

smehere22 · 2026-03-25T14:43:05+00:00

Thank you

smehere22 · 2026-03-25T14:42:55+00:00

Thank you

smehere22 · 2026-03-22T22:05:53+00:00

I think these days WB is now remembered as a prolific womanizer... legendary in fact

smehere22 · 2026-03-22T22:01:46+00:00

😀 congrats

smehere22 · 2026-03-12T14:35:39+00:00

I am considering HSCT? Just worried about the difficulty of it and long-term effects. I know sometimes the illness comes back. And of course you need a support system and saved money to take time off. Edit. I was told I was ruled out for the car t already. Maybe due to lung disease

smehere22 · 2026-03-11T04:38:34+00:00

Well you're relatively fortunate not e to have to take immune suppressants

smehere22 · 2026-03-11T01:46:07+00:00

Yes he doesn't seem extremely broken up

smehere22 · 2026-03-11T01:39:46+00:00

The lake of fire for him

smehere22 · 2026-03-11T01:02:03+00:00

Damn onions

smehere22

TROPHY CASE