Scleroderma

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Scleroderma
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Relationships & defeats where do we discuss that?

Hello, I’m new here and I’m dealing with some really rough relationship issues that I feel have a lot to do with my health. Where do people discuss these challenges on The Mighty? I will admit that tim struggling with the relationship and it’s a 10 year relationship and we love each other very deeply yeah I feel like my medical condition. Makes it too scary or risky for someone to take a chance to be with me based on the numerous systems have been affected by my systemic connected tissue and auto immune disorder. The person I was dating for 10 years that we’re about to be engaged is a physician had a kidney transplant and I think understood too well how much risk I’ve had recently with several near death medical crisis according to my present medical history, my trajectory is not going upward at all. In fact, my immune system has attack more organs systems and now I’m not a surgical candidate, major spinal deformity or hammertoe/bone spur injury.
Im still here. My bf broke up w me. We were supposed to get engaged shortly. Hard week. I think it’s too late I missed my chance. I was in a to me and my kids which took me 15 yr marriage that was destructive to me and my kids. It took me ten years to get a divorce. I’m still dealing with the fallout from that. Dating# #mixedconectivetissuedisease #PrimaryImmunodeficiency #DemyelinatingNeuropathies #MultipleSclerosis #CrohnsDisease #AutoimmuneDisorder
#Epilepsy #Arthritis #DegenerativeDiscDisease #ChronicFatigueSyndrome #Arthritis #DiffuseIdiopathicSkeletalHyperostosis #seronegativearthritis #Scleroderma #Endometriosis #Gastroparesis #ChronicVestibularMigraine #Migraine

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I’m so happy to be here… a refuge for my refuge

In the midst of, drama and chaos lies art. The refuge for my spirit and soul. What makes this time so special is that my daughter and I I spend time on the weekends and weekdays for thirty minutes or three hours. She’s the color in my world. She makes all the appointments, surgeries, treatments, hospitalizations worth it. She’s been the reason why I get up every day. I’m a single mom and both my daughter and son developed about 7 -10 of my diseases. I have severe systemic disease, autoimmune and connective tissue, causing Crohn’s endometriosis, demyelineating syndrome, degenerative spine disease, primary imomunudeficiency disorder, epilepsy, localized scleroderma, migraines, interstitial cystitis, and DISH. Art allows me to process and find a place of sanity amidst much disorder. When I see beauty in the world, like a sunset or piece of artwork, it is my reminder to stop running and appreciate the beauty and that it is a miracle. No matter how bad my day was I always knew I had the sunset. And if I wasn’t going to appreciate the sunset and leave the world a little better than I found it, then why was I here. I thrive on color. I’ll use any thing I can get my hands on a pen to draw or a needle for needlepoint.

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New to Stiffperson and not sure what to do

Hi - I lost my thyroid functionality due to toxic chemical exposure while serving in the Army. I don't regret my time in the military at all, but it is what it is.

It seems the thyroid was a doorway, and without it being shut anymore, many unwelcome visitors came in and set up their new home. Besides the thyroiditis, I now have pernicious anemia, Raynaud's syndrome, scleroderma, and the newest and most nefarious invader, Stiffperson Syndrome. I never would have tested for it without Céline Dion's announcement, and I am grateful for her courage every day.

Stiffperson, however, has made it very difficult to hold down a steady job. It has made the cold winters here painful to my muscles. It has changed my idea of my future and my plans. I took my health seriously and used to feel I could do anything. Now I feel limited and that has taken a difficult mental toll on me.

I live in the northern part of the state of Utah, in the US. I appreciate the advice here and am looking forward to learning from the experience from people here. I want to thank you in advance for your help and your insights.#StiffPersonSyndrome #PerniciousAnemia #Scleroderma #RaynaudsPhenomenon #thyroiditis

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I'm new here!

Hi, my name is All4babies. I'm here because
I have Lupus/SCL. I have a Rhem but All he suggest is meds meds meds. While I understand some are essential, I just feel like thats all he knows to do.I'm so frustrated and of course stress, confusion and worry are definitely not helping.#MightyTogether #Fibromyalgia #Lupus #Scleroderma

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Diagnosis

As some of you know, I have really been struggling with my hands lately. I have cerebral palsy and have had chronic hip pain for the last 7 years.

My rheumatologist thought I had fibromyalgia, but I don’t. My rheumatologist worries that I might develop scleroderma. My ANA is extremely high, but I do not have rheumatoid arthritis. I have progressively been losing function in my hands and my knuckles turn purple at times. (The high ANA and pain in my hands are not related to cerebral palsy.) My rheumatologist said this could be consistent with arthritis.

It hurts to write, type, and do many other things. The hip pain was bad, but my mentality has gotten worse as my hands have lost functionality.

Has anyone else experienced anything like this? At times I want a diagnosis so this pain could be treated.

#Undiagnosed #CerebralPalsy #ChronicPain #Arthritis

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