The Scleroderma Chronicles: Days of Wonder

The last time I chatted about my systemic sclerosis status I had just seen my doctors and I was doing great. I had sustained very little additional damage to my lungs and heart, I was taking a new supplement (tart cherry) that was an anti-inflammatory that my doctors thought I could tolerate, and I just flat out felt great. I could walk without pain, I had energy and I woke up most mornings feeling *normal* which was pretty darn amazing.

At the end of June I headed off to the clinic for my usual blood tests, joked with the man who draws my blood every 60 days, and bought myself a Starbucks on the way home to celebrate another successful outing. Two days later I was wondering why my blood results hadn’t been posted to the online portal. I was outside drinking my morning latte with the cats and the roses when the call came; my liver results were fine, but my kidney function had dropped dramatically. Oops. No more tart cherry for me!

Maine Coon cat with a bob tail.
Yellow Boy hanging out with my squash plants. Amazingly, he did not run away when the call came.

That’s when the days of wonder began. Wonder as in: “I wonder what will happen next?”, “I wonder what this is?”, “I wonder if I should call this into the doctor?” , and “Good grief, what now? I wonder when this will end?”

As soon as I went off of the tart cherry extract icky symptoms came back with a vengeance along with some new ones. It’s like they all made new friends while they were gone and couldn’t wait to show them off. Here’s what has been happening over the three weeks.

  • I woke up one morning with pitting edema in my arms and face. I looked like a chipmunk. I also had shooting nerve pain in one side of my face. Fabulous.
  • Two days later the edema was gone, but my knees hurt so bad they woke me up at 4am, and that was it for the night. Ugh! They also had swollen lumps on them!! In desperation I smeared medical marijuana cream (from a neighbor – this is Colorado and we have this stuff!) on them to see if that would help. The pain shut off within moments! I need to get me some of this stuff!!
  • The next day I slept through the night, but when I woke up in the morning the skin across my knees was so tight that I couldn’t bend them until I warmed things up with a heating pad. They itched and were warm to the touch. Maybe marijuana cream isn’t such a good idea after all. I’m losing patience, I tell the cats, who have piled onto my legs too since there is a heating pad in use… When will these cats learn how to make a morning latte?
  • Shooting pains start in my lower abdomen the day after my knees stop hurting. Diverticulitis, says the internet. Seriously! I wonder if I should call this in? I wonder if I should see that gastroenterologist after all…

Over the next several days I experienced scary low blood pressure episodes, chest pain, fevers, itching, more joint pain, and to top things off I started losing my balance and falling over without warning a few days ago.

Days of wonder, indeed. Nothing lasts; it appears that I’m on a roller-coaster of symptoms that will provide my summer thrills and scares until the ride ends (hopefully soon!). My repeat blood work showed that my kidney function had improved, and my rheumatologist isn’t saying scary things to me any more. My blood pressure is again stable, the chest pain and edema are gone, my balance is restored, and the pain in my face has vanished.

Cinco de Mayo rose.
This is one of the roses in my garden. It is called “Cinco de Mayo“, and I planted it in memory of my mother, who loved roses, who died on May 5th many years ago, and who remains the benchmark for all time for patience, grace and courage in the face of adversity.  Of course this rose has been blooming beautifully during these days of wonder.

This could be a really bad time, but I’ve discovered that it is best to just go with the flow and to focus on the ridiculous side of all of this; lumps on my knees, my chipmunk face, and falling over without warning. Really, don’t you just want to bust out laughing at the thought of all that? Thank heavens I didn’t develop a rash! It is also important to notice all the wonder around me. The beauty of my garden and the flowers, the days in bed reading new books, great dinners produced in the crock pot, the antics of the cats, and the joy of putting together a new knitting project. Wonder is endless, easy to find, and costs nothing. Okay, let’s be honest. Binge watching shows on Netflix helps too.

Today I feel a little dizzy, but much better. Hopefully I’m coming to the end of the tart cherry withdrawal. That’s right. Best to stay positive and cheerful.

I wonder what will happen tomorrow?

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.

16 thoughts on “The Scleroderma Chronicles: Days of Wonder”

  1. Keep knitting, and maybe, just maybe, the doc will recommend tart cherry juice in small doses…I don’t know if that will work. I wish you the best as you find something that does help…and the funky weed (while fully legal), doesn’t help as much as people think it does. It can make some conditions worse…(usually mental ones, which yours certainly is not). Best of luck and healing thoughts sent your way.

    1. My docs won’t let me take any NSAIDs, and now tart cherry is off the table too. I’m pretty motivated to stay off of dialysis, so it okay. I know people who swear by marijuana for pain relief, but like you I’m concerned by mental impacts; brain fog is so bad already, why risk worse? Since the lotion caused a reaction I won’t do that anymore either.

      Im still on my major disease altering drugs, so I’m still good. 😀

  2. Keeping your sense of humor intact is vital. Also enjoying the beauty around you including the heat-loving cuddly cats. I hope you feel better and the symptoms fade away:)

  3. Oh, Marilyn! Thank you so much for sharing this. I don’t know if it helps to hear that you are an inspiration or not, but YOU ARE!! Again – thank you, thank you! Sending loads of good vibes and good wishes your way. ❤️

    1. Thank you. My neighbors have been just wonderful and I really have great friends; it’s easier to be positive when I have such good support. Today I got things done and I feel like I’m coming to the end of the flare; the monsoon has arrived and I think the cooler weather with rain is helping.

      I’ve started some fun knitting projects. I should be able to show some stuff off next week. 🙂

  4. I’m sorry to hear you’ve been so miserable. What a scary disease. The symptoms seem so random, too, at least to an outsider. I have heard wonderful things about medical marijuana cream. I wonder if there is another ingredient causing the reaction and not the Cannibus itself? If it helped your pain immediately, that would be a hard thing to give up. I’m glad you have your garden, your handsome kitties, a heating pad and your sense of humor. Sending healing thoughts your way.

    1. I checked out the label… I think that all the other ingredients are ones that I’ve been exposed to before, so I am back to the THC. Lately my knees are bothering me more and more; I have the sense that the skin is tightening up and making it harder for my joint to bend. It could be that the cream just magnified that effect. Anyway, the pain is much better, so I’m sleeping just fine, and that’s what’s most important. 🙂

      Thanks for the good energy. The cats, garden and I are having a pretty good week, so it must be working.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: