The Scleroderma Chronicles: Year 3.0

My, how the time flies. Not that I’m having a good time here, but it is hard to believe that it has already been three years since my diagnosis of limited systemic sclerosis (AKA scleroderma). I’ve been reflecting on the last year while planning this post, and decided that I should start out with a little info about my disease, share the highlights of my three years, and then give unpack this year a little.

Butterfly
But first, a butterfly picture! Butterflies have hard skin, and they are doing OK. Be like a butterfly, I tell myself. This little lady was part of a massive migration of butterflies that came through our state in the fall. Seriously, there were so many of them that they showed up on the weather radar and the NWS put out a bulletin asking the public to identify the bird species: not birds, but butterflies.

Scleroderma is an autoimmune disease that is chronic (no cure), progressive, disabling and possibly fatal. It is rare, which is why you probably never heard of it. The name itself means “hard skin”, and that is one of the most distinctive features of the condition. The widespread scarring and buildup of collagen protein that causes the hardening of skin also occurs in internal organs in patients with the “systemic” form of the disease like me. Most of the damage is hitting my intestinal tract, but my lungs, kidneys and heart are also sustaining damage. In the background, hard to see, but never to be ignored, is damage occurring in blood vessels that can cause blood pressure to soar and places me at risk for blood clots.

I have collected several doctors over the last three years as damage continues to slowly accrue in my lungs, kidneys and intestinal tract.

Here are the highlights of my first three years:

  1. My first year was one of shock and horror. I was so worried about tightening skin and the use of my hands that I didn’t ever think about the bigger picture. I was started on drugs, stabilized, and felt much better by the end of the year.
  2. The bottom fell out my second year. I was using my hands okay, but I developed breathing problems, had to be placed on oxygen, and my heart started to misbehave. Adjustments were made to my medications to compensate for my lowering lung volume and to slow the rate of lung damage. At the lowest point I was sent to palliative care and told to make final decisions.
  3. This year, the third, has been one of highs and lows. The new medications kicked in, I came off oxygen and my chest pain stopped. I was discharged from palliative care. I developed gastroparesis and had to move to a very stomach-friendly diet. I stabilized and sailed through the first rounds of appointments in the spring only to develop kidney problems in the summer along with higher pressure in the artery that goes from my heart to my lungs. This blood pressure, which is called pulmonary arterial hypertension, is extremely damaging to the heart and will need to be addressed if it gets any higher. Fabulous. Another doctor.

My summer this year was really hard. I got very dizzy, developed joint pain and sore muscles, and eventually got so brain fogged that I was afraid to drive. My knees were swollen and developed sharp, shooting pains; I will need to buy a new car if this keeps up as I can’t manage the clutch much longer. I struggled on the stairs and my face turned blue on a regular basis. My neighbors stepped in and took over the yard work for me, and my knitting buddies began to drive me to all fiber related adventures as I wasn’t sure I should be trusted on the road. See, highs and lows. My illness is kicking my butt, and the people around me are stepping in to make sure I’m OK.

Early this month I met with my new internist to see if there wasn’t something that I could take to beat some of these symptoms back. OK, I’m going to be honest here. I cried. We agreed that I would start the tart cherry extract again, but at a much lower dose than I took previously in the spring. (Tart cherry has anti-inflammatory properties and is easier on my stomach than NSAIDs. Unfortunately, my kidneys were damaged the first time I tried to take it.) I’m going to have my kidney function checked every month, but I’m already so much better (brain fog, goodbye!) that I’m really hoping that I can tolerate it OK. In the meantime I’m getting lots of chores done in this golden period while I feel so much better. I’ve moved furniture, completed some projects, and have driven to many, many stores that were ignored last summer.

Wizard Hat
And I made a crocheted had for my niece to wear this Halloween. Really, I’ve been a bundle of energy the last couple of weeks.

So, this is the end of the third year. I feel pretty good, I’m getting things done and making plans, and I am making hay while the (tart cherry) sun shines. Next week I get my blood drawn for the kidney function test and after that I see the rheumatologist.

I’ve been thinking about butterflies again. The day after I took that picture of the butterfly it snowed. A lot.  It took a couple of days for it to melt as the temperatures climbed back up into the 60’s and 70’s. I wondered if the butterflies would make it. As I walked out of the office building after seeing my internist (and still recovering from my crying fit in her office…) I found butterflies swarming around one of the shrubs by the parking lot.

Those butterflies. You can kick them, but they come back. Be like a butterfly, I tell myself.

And the fourth year begins.

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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 cats.

12 thoughts on “The Scleroderma Chronicles: Year 3.0”

  1. Wow what a journey it has been for you! Good for you for taking advantage of every moment of this sunshine period. I’ll keep my fingers crossed the appointments go well. Thank you for sharing about this as I had never heard of it.

    1. It has been a crazy journey, and I am still on the road to unknown adventures. I am so lucky in my friends, and I am grateful that I have interests that keep me busy and enough money to buy all the books and yarn that I want!

  2. Yes, be the butterfly! I’m glad you’re doing better than you were. It sounds like a constant adjustment is necessary in all things. I’m so glad you have people in your life who step in and help when necessary:)

  3. I think I have been reading your blog for about 3 years. I am so sorry for your health issues but you are an inspiration with your attitude and handling of all that has been thrown at you. I was so glad the tart cherry juice was helping and then surprised to learn that it was having a negative effect on your body. I hope this smaller dose, which you feel still helps physically, will not be taxing to your kidneys! What a blessing to have a craft which you enjoy and can still do, as well as helpful neighbors and friends. I seldom comment because I really don’t feel that I have much that is worthy to say,but, I wanted to comment on this Anniversary post to say I appreciate your blog and wish you well.

    1. Thank you so much for the kind feedback. I started writing the blog when I was first diagnosed and struggling to find my way; at the same time I started knitting endlessly. Now, three years and many shawls later, I feel like I’m in a good place.

      I’m glad you left a comment. 🙂 I love to hear from people.

  4. Thank you for sharing this, Marilyn. I can’t believe it’s been three years! I love reading your blog and hearing about what you’re knitting, and I’m always holding you in my heart in hopes that somehow that might help with the challenges you’re having to face. I’m so thankful to the internet for letting me be part of your knitting life plus a little bit more. ❤️

    1. I am also grateful for the internet. How did people survive without this essential link to the outside world and an invaluable support system that it can provide. Thank you for letting me share the journey with you, knitting, cats and all! I had the blood work done today and now i’m waiting for results. 🙂

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