The Scleroderma Chronicles: My Second Year Report

Well, here I am at the end of my second year since my diagnosis of systemic sclerosis, a life-threatening form of the autoimmune disease scleroderma. Last year I blogged about my illness: I had come through the worst of the grief and horror at the initial diagnosis, had made my way through some scary incidents that sent me flying across town to emergency centers, and was pretty upbeat about where I was in the progress of the disease.  I was sick, but I hadn’t developed any of the most serious, life threatening complications. My heart and lungs were fine. I had just been started on some serious immunosuppressant drugs (the same ones that are given to kidney transplant patients), and while they are risky, I had been told that they could really make a difference in my 10 year survival rate.

Hey, you roll the dice and you take your chances.  No sense worrying about the unknown future. I drugged up and slept like a baby at night.

Star Trek Meme
The Kobayashi Maru test, as all Star Trek buffs know, was a no-win scenario;  it was meant as a test of character. Systemic sclerosis, an incurable,  progressive, disabling and potentially fatal disease, can  also be considered such a test.

Ready to hear about my second year? Let me give you a hint: buckle your seat belt, because we are in for a bumpy ride.

  • November-December: the drugs begin to kick in and as they beat my immune system into submission my skin starts to harden up. I hurt everywhere!! I can hardly bear to comb my hair. The place where my flu shot went in hurt for weeks afterwards.
  • January: I caught the flu. Talk about insult to injury! Here’s the short version: antibiotics, off the immunosuppressant drugs so my body’s immune system can fight back, and then trouble breathing, chest pain, heart palpitations, and a partridge in a pear tree. What a mess! The month passes in a blur.
  • February: I’m still pretty sick and struggling to breathe. I get bounced back and forth between doctors as the debate about the root cause of my symptoms rages. I begin to pressure my doctors for answers and there is much testing. Oops. All is not well with my lungs and my heart is accruing damage. I get sent to a pulmonologist and she give me an inhaler to help me breath. She also tells me I am in serious trouble and refers me to palliative care. The doctors increase my immunosuppressant drug dosage.
  • March: Why, hello, Sjogren’s Syndrome. We forgot all about you! In the concern about my systemic sclerosis, the bad boy of my autoimmune twosome, everyone forgot that I also have Sjogren’s Syndrome, another serious autoimmune disease that causes dry eyes and mouth. As it turns out, it can also cause small airway disease (think never-ending asthma attack) and it has pushed me into chronic respiratory failure. Hello oxygen machine. You are my new best friend.

    Oxygen machine
    My new best friend!
  • April: new lung scans are back, and while I am diagnosed with interstitial lung disease, it appears that it is only mild. Huge sigh of relief!! There is also consensus that my pulmonary hypertension has not advanced. Both of these diagnosis, while still early and mild, are very serious, and the decision is made for palliative care to continue to follow me. Bummer!
  • May-July: Sunshine! Heat! Burning muscles, aching joints, gastritis, dizzy, dizzy, dizzy, and I notice that my lips are blue. I’m on oxygen 24/7 by the end of July.
  • August: my internist changes my meds to bring my heart rate up, and suddenly I have enough oxygen. The heart palpitations stop and after more testing I come off the oxygen. The 6 month Sjogren’s-driven asthma attack is finally over.
  • Quilt and socks
    Summer quilt and socks for my poor hurting feet.

    September-October: why does it hurt to walk? What is up with my feet? And this whole barfing in the middle of the night is getting downright annoying… My internist tests me to see if I have an H. pylori infection.

  • November: Well, doesn’t this beat all. The H. pylori test came back negative and I am diagnosed with gastroparesis. The muscles of my stomach are too damaged by systemic sclerosis to work correctly; the damage is irreversible. I start eating a very limited diet of soft foods and dairy. Ironically, I can now eat jelly donuts, but not fresh baby carrots. I’m losing weight anyway.
Little Greenhouse
The gastroparesis diagnosis hit me hard even though I kind of  knew it was coming. I stopped to get a little cheer-me-up on the way home.  Check out the little greenhouse I put together for the kitchen window. As always, MacKenzie had to help out with the picture.
Flowers
Here’s the flowers. Aren’t these cute? They were sold at the local nursery to put into “Fairy Gardens”
cat
and how could I resist adding the little cat and the mushroom? Those plants are miniature Kalanchoe that should eventually bloom again.

See, a bumpy ride that is still going, but a year that was also rich in gifts. Palliative care forced me to face the future with more courage and to make end-of-life decisions for my family and to start cleaning out my house of junk. I talked to family about my medical power of attorney. I enlisted one of my doctors to manage the medical team and I began to feel more in control of my basically out of control disease. I began to knit gifts for those I love with a purpose: everything now is a piece of me. In my mind the shawls that I am making for everyone I know are the “Good-bye Shawls”. I am on fire to make as many fingerless mitts for other scleroderma patients as I can. At the end of the day, this year was not one of struggle and heartbreak as I dealt with the endless march of a disease that has no pity or remorse. Rather, it was one of care, giving, creative fire, good friends, and the meditative peace of knitting.

Okay, I do get cranky at times, and there has been some crying.  I get short with annoying salespeople because it is so hard for me to shop. I told my ex-husband I was tired of hearing about his “stupid-ass”  motorcycle. I yelled at the cats. I hate when people say, “Well, you look great!” in a way that suggests that I’m not really all that sick at all. I wish that they were there to hold my hair when I hobble to the bathroom at 2am to throw up that nice meal that I hopefully ate but couldn’t digest. There. I got it off my chest, and I feel much better. Aren’t you relieved to hear that I can be petty and mean from time to time?

Tomorrow is Thanksgiving Day. You know, it is easy to focus on the day: travel, turkey, family and the descent into wild Christmas shopping. Sometimes we forget the history of this national holiday; thanks for a good harvest and the blessing of probable survival through the coming winter. It is also a time to reflect on the bounty of the last year and to be grateful for the gifts it brought.

In spite of all the bumps of the last year, I am grateful for all of the gifts I have received.

Happy Thanksgiving everyone!!

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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.

17 thoughts on “The Scleroderma Chronicles: My Second Year Report”

  1. I love, love the fairy garden. I have enjoyed our friendship this year. I will continue to be a listening ear and shoulder of support and promise to stop telling you how great you look! HAPPY Thanksgiving to my new friend. Hope it is not too stressful so I can see you Friday at knitting.

  2. A poignant post but I recognize alot, dealing with auto iminue diseases myself for years now. I am in a pretty good place now and hope to keep it that way. You are very brave and I wish you a much better year next year! Love your fairy garden and your sweet cat. Happy Thanksgiving with Love and Peace, Johanna

  3. I have followed your blog for over a year.Wishing you a good year moving forward. I love seeing your knitting projects . As a cat lover I enjoy the pictures. I have learned about your medical issues and wish you well. I truly hope that you have many more blogs to post in the future.

  4. I’ve just now gotten to read your post. Thank you for sharing so many of the details of your year. Like the poster above, I’ve been following your blog for just over a year and remember when you made the last update post. I hate thinking that when we don’t hear from you for awhile it’s probably because you’re having to deal with health challenges. It’s that much nicer when you do post, though. Your little garden is absolutely wonderful, and of course, MacKenzie is purrrrfect!!! 🙂

    Sending lots and lots of good vibes your way. XOO

    1. Thank you. I do tend to fall into a posting abyss when I’m doing poorly. Partly it’s due to fatigue, but I also wonder if I’m being selfish to take other people on my journey if things continue to go poorly. It’s a dilemma.

      Then I get projects done, the sun shines, MacKenzie provides me with good pictures, my energy surges and I post again. 🙂 I’m so grateful to be connected to people through the blog and the positive energy helps so much. Thank you.

  5. That a way Midnight Knitter. Positivity is the key. So what if you have down days , where you cranky, and miserable to be around. It’s called “being human!” I allow myself 10 minutes to have a pity party and then I move on. I have had Systemic Scleroderma for 15 years now so hear me when I say this” yes! You have a potentially fatal disease that limits just about every aspect of your life, but YOU and only you are the drive in your life journey Scleroderma maybe in the car but his butt is in the back seat. Take care ❤❤-A

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