[Kari Dickerson]

I don’t have kids or husband, so maybe that makes it easier? I have been telling friends and family members (the ones I am close to) slowly. I tell them it is an autoimmune condition that tells the cells that produce collagen (scar tissue) to produce too much, resulting in hardening of skin, as well as cells of blood vessels, etc. I very briefly mention the risk of organ involvement and what might develop with the skin (I don’t have skin issues yet), but I focus on what I need now, not how bad it might get. I am in the middle of dealing with the tests, doctors’ visits and trying to do my work while distracted, fatigued and losing time to drive for the appointments. So what I need is support and encouragement. I also have a couple of work friends (we all work remotely) I have given permission to talk about me so if they notice something concerning that I am ignoring they can confirm then address it with me. I decided I would rather those close to me, work or personal, hear from me now when it isn’t as hard or exhausting to discuss as down the road when I am feeling worse or dealing with more challenges. Not sure this is the right approach for everyone but it is working for me so far.

[Kari Dickerson]

Thanks for the encouragement! I meet with the local rheumotologist tomorrow to review the results of his tests, though they weren’t very focused on SSc. I plan to get a referral to a specialist, though it will require traveling a bit

[Kari Dickerson]

I posted details in the forum for newly diagnosed, but the short answer for here – I was officially diagnosed a month ago, still undergoing tests with the rheumotologist. All too new still for me to have tips, other than how important it is to stay present, not think about future days, months or years, just what I have today. I have learned a LOT thanks to the Scleroderma Foundation’s self management resources, but living in eastern Idaho I feel pretty isolated so am looking for connections with others so I feel less alone in this journey.

[Kari Dickerson]

This looks like a new forum/site, but I am eager to break through the isolation and the vision and mission of this looks awesome, so I will take a risk and jump in.

I had a marker in my blood work about 7 years ago that said I might develop CREST (systemic sclerosis), but I had no symptoms at all at the time and nothing else was done. Then several years later I started having difficulties swallowing but hesitated to do anything because I could manage it fairly well by how and when I ate. It might have just been acid reflux at the time, but not sure. Then Raynaud’s started in my fingers in Nov 2019. They dilated my esophagus in Jan 2020 and just wrote it off as acid reflux, no action taken except a prescription for Prilosec. And my primary care doc, when I shared my concern that I now seemed to have 2 of the 5 conditions of CREST, just said he “had lots of patients with Raynaud’s”. But the dilation did nothing to improve the swallowing so I would have had the procedure to test the swallowing except the pandemic shut things down. This all ends well in that a few months ago I moved to a different part of the state and despite being much more rural my doctors are taking it all, including my Celiac disease, seriously. In fact, the new gastroenterologist did a test that uncovered low IgA levels, so I now tell people I am collecting “ologists” – gastro, immunologist, and rheumotologist, in addition to dermatologist and ophthalmologist. The gastro doc is the first to officially tell me I have scleroderma, and the blood work ordered by the rheumo doc seems to have confirmed it, though the visit to discuss the results of his extensive tests is not until May 26th.

Anyway, sorry for that info dump, but it helps to tell the story. I am thankful that so far I have no skin involvement…so maybe it is the systemic sclerosis sine type? But the risk of internal organ involvement is still scary. I am trying to stay grounded, focused on today (which is still pretty good), not on the what ifs of tomorrow, but would welcome any advice or resources. This is definitely a lonely disorder

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