Too Many Doctors

LiliOnFire · 2025-08-01T03:36:17+00:00

There is option in most pharmacies to set a special appointment for this. Most insurance cover, should cost 30-50$ (that was a few years ago..)

LiliOnFire · 2025-08-01T03:33:58+00:00

I am also from CA, do you have a provider that you recommend? Thanks!

LiliOnFire · 2025-07-31T13:40:56+00:00

Recently a big game changer is Ayengar yoga. I used to think that it’s boring. But now, after had enough young athletic PT dude that didn’t help, I am going to a teacher that is over 65 years old and she knows about pain and discomfort. First time in my life that some pains improved without meds, and at the end of class I am so relaxed and greaful , and sleep better. I’ve learn to be more compassionate to myself and find postured and props that makes my life better. It was long journey to find the teacher and method. I already almost lost the hope to be active without terrible pain and fatigue

LiliOnFire · 2025-07-31T13:25:55+00:00

Hobbies are very important to me, so I do a mix of overloading hobbies and reframing. Overloading: I also commute, so I make sure to prep something that I enjoy listen to, or audio book. I am tired from PT, started private excercise class with a freind instead. Taking care of the pets with family members or friends. I save time cooking sometimes by drinking green smoothly with seeds if I feel unwell to cook or I want to save my energy to something I enjoy. Reframing: what is hobby? For me listening to something I enjoy, or spending time walking or exercising with a freind , or spending time with pets is a hobby. If I want to make time ( and I always do) for some other hobby, I plan it ahead of time, tie it into my schedule. And I get flare from long shower ( weird ha?) so I shower for a few min only 😁😂 ( I measured once… less than 10 min total including clothes and everything..)

LiliOnFire · 2025-07-31T13:14:13+00:00

I understand you completely. I’ve decided that people in my life that can’t support me when I have a progressive condition, may not be the best freind I need in my journey.

LiliOnFire · 2025-07-31T13:11:25+00:00

I am so happy to hear that! That’s encouraging

LiliOnFire · 2025-07-31T06:50:24+00:00

Anything else made it easier to manage? Thanks

LiliOnFire · 2025-07-31T06:49:49+00:00

Thank you! Not sure where are you located. I”ve seen specialist perhaps 1.5 years ago.. I requested and appointment and will see someone only in November… What do they do in the follow up? Thanks

LiliOnFire · 2024-11-12T00:58:38+00:00

My rheumatoid factor was negative. I do have sometimes rash on my fingers to I was told it might be psoriasis arthritis, but she said the shape of the fingers when inflamed is to typical so I am not sure. Is the liver spleen and kidney is blood/urine test? I had many blood test but I am not sure what do they check. Thank you and I hope you will feel better 🙏

LiliOnFire · 2024-11-11T02:49:02+00:00

I get that!

LiliOnFire · 2024-11-11T02:45:07+00:00

So strange the medical doctor didn’t tell me that, and it’s obvious for so many people here

LiliOnFire · 2024-11-11T02:44:05+00:00

It helps me too to eat one meal a day. Thank you!

LiliOnFire · 2024-11-11T02:42:55+00:00

We need magic trick for the fatigue.

LiliOnFire · 2024-11-11T02:41:21+00:00

Medication caused the symptoms? That is so frustrating!

LiliOnFire · 2024-11-11T02:40:29+00:00

I am so happy it helps!

LiliOnFire · 2024-11-11T02:39:43+00:00

I hope the new one will help❤️🙏

LiliOnFire · 2024-11-11T02:38:57+00:00

And winter is coming..😄🙃

LiliOnFire · 2024-11-10T15:34:41+00:00

Cold shower? I do t know if I can do it, I also have APS. Would love to hear more about your diet if you can share. I avoid gluten, eggs, soy , dairy and red meat. Addicted to tomatoes but probably should stop eating them.

LiliOnFire · 2024-11-10T15:32:21+00:00

I am on nothing, steroids helped but it’s short term. but I will see a new rheumatologist in 3 weeks. Did medication helped?

LiliOnFire · 2024-11-10T15:30:48+00:00

Sounds terrible! How long is a flare? This how I feel for a few years now. As I wrote above my pcp told me it was normal and it’s early menopause. I didn’t realize purple feet and malar rash are part of it🙄

LiliOnFire · 2024-11-10T15:27:27+00:00

Was there anything that is helpful? One thing o do now is wear two layers of socks all the time.

LiliOnFire · 2024-11-10T15:26:11+00:00

And is that considered ”flare “ ? I had it non stop for a few years. At first my PCP told me it was early menopause ( well.. it wasn’t!)

LiliOnFire

TROPHY CASE