My 2022 Painful Autoimmune Disease Journey! Rheumatoid Arthritis, Lupus, Dermatomyositis

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Autoimmune Disease Rheumatoid Arthritis-Lupus-Dermatomyositis-UCTD

I wanted to share parts of this new Autoimmune Disease journey of mine openly with my friends family and everyone else- anyone really who might be going thru same or similar. I realized over the months as I’ve been searching for pics of rashes etc- that looked like mine that I wasn’t finding black women with Dermatomyositis pics. Lots of Lupus but not the exact rash I have/had.

It is important to me that my pics make it to Google so other women can see and compare. I am going to be the Black Face of Dermatomyositis. When I get a chance to make a post on my website I’ll tag the photos & that should make them searchable.

So- the journey began in 2018 when I was diagnosed with Rheumatoid Disease (Autoimmune disorder). All lab tests, clinical findings, xrays etc- 100% all boxes checked.

Recently after 4 months of rashes on my face and torso, I received a 2nd diagnosis of UCTD-Undifferentiated Connective Tissue Disease (Autoimmune disorder)- which means I have signs and symptoms of multiple connective tissue disorders but NOT ALL THE TECHNICAL diagnostic criteria are met 100%.

It is completely COMMON once you have one connective tissue disease such as rheumatoid arthritis that you will have overlap of others. That is what has occurred with me. The 1st graphic in the pics below reflect the spectrum of UCTD of which I have;

unspecified connective tissue disease, autoimmune disease

-Rheumatoid Arthritis

-Lupus Panniculitis ( Profundus) by skin Biopsy = Lupus panniculitis, also called lupus profundus, is a relatively rare abnormality of connective tissue. It may occur as a separate disease or coexist with SLE or discoid lupus erythematosus Lupus panniculitis occurs twice more frequently as a separate disease than in association with SLE or DLE

-Dermatomyositis (by skin Biopsy) is a rare disease that causes muscle inflammation and skin rash. It’s one of a group of muscle diseases that cause muscle inflammation and swelling. It’s different from other muscle diseases because it also causes skin problems.

I also have Sjrojens- Sjogren’s (SHOW-grins) syndrome elements which is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus.

The Rheumatologist after reviewing the last 4 moths of work-up etc has also pulled several abnormalities into her watch including the “Pneumonia” I was treated for because MOST LIKELY it is Rheumatoid inflammation not any type of bacterial or Viral thing.. She also put under her list a small Kidney issue they saw on the CT Angiogram.

Autoimmune Disease Rheumatoid Arthritis-Lupus-Dermatomyositis-UCTD
heliotrope rash, dermatomyositis
heliotrope rash, dermatomyositis

The Rheumatologist started me on CellCept and Prednisone. Because of the suspected respiratory involvement she said she really wanted me to come in for Methotrexate Injections but that takes abit of preparation and she said I needed something NOW. CellCept they give to organ transplant recipients to knock out the immune system- to stop it from damaging tissues (hopefully in my case)

My next post when I can will be about the decisions I made about my treatment plan and some of the psychological/emotional impact of WIPING OUT YOUR IMMUNE SYSTEM DURING A PANDEMIC etc and facing a chronic PAINFUL condition such as this.

Autoimmune Disease Rheumatoid Arthritis-Lupus-Dermatomyositis-UCTD
Autoimmune Disease Rheumatoid Arthritis-Lupus-Dermatomyositis-UCTD
heliotrope rash, dermatomyositis

New #hashtags#Violaceous #UCTD- violaceous because that is the term or color used describe the Heliotrope Rash that is specific to Dermatomyositis- I 1st believed I had Dermatomyositis after taking the 2nd pic that shows purple (violet rings) around my eyes #Violaceous and btw I also showed the doctors a patch on my knuckles that they ignored that is also a sign of Dermatomyositis.

Autoimmune Disease Rheumatoid Arthritis-Lupus-Dermatomyositis-UCTD
autoimmune disease, lupus, dermatomyositis, , heliotrope rash, dermatomyositis
heliotrope rash, dermatomyositis

This is also part of why I want to share my perspective because the pics on other people skin look different than on my complexion.

Autoimmune Disease Rheumatoid Arthritis-Lupus-Dermatomyositis-UCTD- Heliotrope Rash
Severe Heliotrope Rash on Asian oman

Getting to this point i’ve seen approximately 14 doctors, 4 being specialists. There is a lot to look back on but suffice it to say I’m here now. I don’t know what else to do but write about it. Maybe someone needs to see these images and hear my story to help them in some way

I’m an open book on everything- always have been. I’m going to try and find a way to incorporate some audio or video at some point so follow my channel .

Tags: Autoimmune Disease Rheumatoid Arthritis-Lupus-Dermatomyositis-UCTD