The Scleroderma Chronicles: June is Scleroderma Awareness Month

I plan to shine like a sunflower this month.

My local garden center had sunflowers for sale.

I am still thinking about resiliency. I went for a drug infusion a couple of weeks ago, and the lady in the chair next to me and I talked about what resiliency means. She is a liver transplant recipient, and she is also taking the immunosuppressant that I take to control my systemic sclerosis. Like a lot of patients in my scleroderma community, she has had to roll with a series of escalating complications tied to her original liver disease. We both now have osteoporosis, walk with canes, struggle with anemia, and are on a lot of drugs. We laughed about the canes and drug side effects: we’re still here, we crowed. Unlike me, she never checks for drug side effects or interactions; if she knew about them, she figured that she would just worry and imagine she was developing them. Instead, she just cruises along and if something comes up, she contacts her doctors.

Resilience.

Welcome to Scleroderma Awareness Month. I’m spending the month organizing my thought about resilience into some type of logical order. I have a Word document going with an organizational table, a ton of links, and everything scleroderma in it. It will be good for me, I think.

This is a pygmy sunflower. How cute it that!

By the way, my new friend also wants an emotional support chicken.

Welcome to June.

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Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

20 thoughts on “The Scleroderma Chronicles: June is Scleroderma Awareness Month”

  1. That’s nice you’ve made a new friend you can have a giggle with and understand what each is going through. I suspect I’d be like her, I can be a little hypochondriac when I read side effects on prescription.

    1. That’s exactly what she was expressing: being a hypochondriac. I have reached the point where I need to know what those effects are so I can start making good decisions when I start a new med or struggle with difficulties. One of my meds raised my risk for a heart attack or stroke about 10%, so I read up on those symptoms. You can’t have any nitrates when taking my pulmonary hypertension drug, but I know that they give you nitroglycerine right away when you are having a heart attack, so I bought one of those medical alert bracelets also. I think that since my drugs are rarer it empowers me to stay on top of side effects and warnings.

  2. The mini sunflower is as cute as the pot it’s in, Marilyn ! 😀

    New topic: what’s with Americans using the word “resiliency” ? I see you use “resilience” also: so why not that all the time ? I yam puzzled by this.

    You are most definitely going to shine throughout June; but then, you shine nearly all the time. And that’s the truth. As Chelsea Brown always said (remember “Laugh-In” ?).

    1. So once again MR, you have forced me to google something. Evidently resiliency and resilience are pretty much interchangeable and have the same meaning. I am reading a book that is set in Ireland right now and lots and lots of the language confuses me. And what is up with whilst? That’s a word?

      Forgive me. I was raised in California, and we are practically language barbarians compared to the rest of the US.

      I do remember Laugh-In!! And that’s the truth.

      1. By now you should know what a pain in the (_|_) I often am, Marilyn ! 🙂

        Ignore anything I write regarding language: I always overreact because it’s my last … erhmm … talent (?).

        But I’m happy that there are others out in the land of the living who remember things like “Laugh-In”. It’s not that those were wonderful times so much as that they were times when fun for its own sake was readily accepted.

    1. I would kill for a greenhouse!! This week I was woken up by a weather alert at 11:30pm that there was a thunderstorm on the way with BASEBALL sized hail. It was only marble sized when it got to my house, but the cats were still not happy at all. Anyway, I saw a car at the store the next day that definitely was hit by huge hail and that’s why I don’t think I can have a greenhouse. But I want one!! Like, a lot!!!

      The pygmy sunflower is safely growing in a pot on the deck.

  3. Love your pygmy sunflower. I’m going to have to look for that. I’d love a potted sunflower!! They are so happy aren’t they. I simply cannot imagine the strength you have to deal with your disease. How blessed those receiving your chickens are!

    1. I’ve been very lucky in my role models, and my life up to now has been good training to NEVER PANIC and just keep working the problem as you go. Did I mention that I was a high school biology teacher? Talk about learning to manage rolling crisis on a daily basis. Oh, we have a fire? How did that python get in here? Carrie is having a seizure? Grace under fire is second nature when you have 30 young people with you, and you need to exude calm while dealing with nine degrees of crazy! Now that serves me well.

  4. I’ve never seen a potted sunflower. In such a delightful pot!! The only ones I’ve ever had were volunteers out by the back fence and birdfeeder. Six feet tall.

    We had hail up here in Thornton, too. About nickel-sized and smaller. No real damage aside from shredded leaves. My trees look like Al Capone and his boys were testing their newest toys.

    1. My poor trees took a pounding too but it could have been much worse: the roses hadn’t bloomed yet. 🙂 This little sunflower should only get up to 18″. I think that it needs a bigger pot, but the bee one was so cute I started out with it anyway.

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