My last flare started sometime in the depths of December and dragged on for almost two months. It’s hard to begin to describe what is happening to me as my illnesses (systemic sclerosis and Sjogren’s Syndrome) intensify and the walls of my world gradually close in as I descend into the ever-deepening abyss of escalating illness. Always unpredictable, it starts before I am even aware that I am in trouble and before I know what’s up I’m a hot mess. Even now, as I write this, I can’t recall what the first true symptoms are, but I’m pretty sure that in the middle of my usual challenges with pain, fatigue and dryness the other problem children creep in the door and take me down before I even know they are there. As the flare builds momentum new symptoms erupt daily including:
- Shortness of breath – I literally start panting every time I move
- Gastritis that makes my stomach burn whenever it is empty, and
- Gastroparesis that makes my stomach hurt whenever I eat
- Intense itching and eruptions of eczema
- Hair loss
- Crushing fatigue
- Sleep interruption
- Swollen joints that won’t bend in the morning, and
- Burning muscles that are too sore to touch
- Brain fog and disorientation that makes me afraid to drive and unable to read
Flares are a test of patience, but they always do come to an end for me. Somewhere towards the middle of February, for no reason that I can put my finger on, I slept soundly through the night. Wow. That was great, I thought. A couple of days later I realized that my energy was coming back and that my stomach didn’t hurt any more. After a week I took a shower and there wasn’t a wad of hair deposited in the drain. My thinking became clear, my driving fearless, and my muscle pain and swollen joints receded to background levels. The itching stopped, the eczema disappeared, and I stopped using my inhaler. It was over; the storm had passed.
When I mentioned to my rheumatologist last month that I was having these flares things suddenly took a left turn and my whole appointment went off the rails. She first told me that there wasn’t any treatment that was more effective than what I was already receiving. (I know that, my systemic sclerosis is pretty stable, and I am grateful. I think that it is Sjogren’s causing all the trouble, but it has to ride in the treatment back seat since it probably won’t kill me.) Then she reminded me that I always mentioned my fatigue and muscle pain, and that maybe I should be tested for sleep apnea or given antidepressants. Suddenly, instead of talking about the conditions for which I was already diagnosed, we had to talk about depression and sleep apnea. I was defensive and almost in tears. It took days to process what had happened there.
It all boils down to two essential truths. I am a Zebra. I have been betrayed by a medical system designed to treat commonly occurring conditions when I suffered from a rare disease. I have had my symptoms dismissed, disparaged, or ignored for literally decades. For my rheumatologist, who I like and trust, to do this suddenly threw me back into a defensive, victim-like posture. I will not let this happen again.
The other essential truth is that it is insulting and counterproductive to cherry-pick out a couple of symptoms from the entire package that I call a flare, concentrate only on them, and then build a diagnostic hypothesis that addresses only those isolated symptoms. Yes, I do have muscle/joint pain, fatigue, and sleep disruption, but let’s not forget about the gastritis, itching, hair loss, edema and shortness of breath. Once I am out of the flare, my sleep is pretty good and my fatigue is much reduced. I know that my rheumatologist wants to help me, but I’m going to insist that we stick to the data and that logic and reason are employed as part of my treatment plan. Even if that plan includes a clause that says… you are currently receiving the best care available and there is nothing else we can do for you because scleroderma and Sjogren’s sucks. Well, all right then. Give it to me straight, because I can handle that, but don’t hunt for ANOTHER condition that you can medicate without better data.
Because I don’t have sleep apnea. I’ve been tested twice in the last three years. I wear a Fitbit that shows that I’m in deep sleep for 1-2 hours a night and that I’m almost motionless all night long. It is time to put that hypothesis to bed and to spend more time talking about things like this lupus-like rash that has appeared on my face…
I’ve also been checked for depression and I’m fine. Yes, I am aware that MOST chronically patients need help with depression, but that doesn’t mean ALL patients require additional drugs.
After all, I’m self-medicating every day with knitting!
I finally decided to write about this experience in my chronically ill life in case it could help someone else. Okay, I also needed to vent a little!
Should I perhaps knit a little something for my rheumatologist? It must be hard for her to treat patients every day who are dealing with painful, progressive and incurable diseases; no wonder she sometimes grasps at diagnostic straws hunting for a way to help.
But if she does it again this Zebra is ready to deal with that nonsense!
22 thoughts on “The Scleroderma Chronicles: Flares and Zebra Nonsense”
I have two main responses to this. The first is to begin to understand the awful consequences of your condition; the second, overriding, one is to continue to admire your spirit. Keep up the self-medication
Thank you. It was hard to be diagnosed with a condition that carries a 50% fatality rate, but harder yet to manage the day to day illness. All things come with a silver lining, however. Its amazing how my priorities realigned after my diagnosis, and how my ability to advocate for myself emerged, although sometimes it takes me a few days to process. Through all crisis, as Elizabeth Zimmerman said, I find it best to just knit on, until I am calm and centered again.
A sound philosophy
I also live with chronic illness and have experienced my fair share of frustration and degradation. Which is so unnecessary and only does more harm. I love Elizabeth Zimmerman’s quote as I often weave for the same reason. Thank you so much for sharing. Mary 😊❤
I’m sorry you can identify with this, but aren’t you so grateful for fiber crafts! I’ve been thinking that I should get my loom dressed now that warmer weather is here. Think how much yarn I would be able to get out of my stash!!
Knitting is the best medicine! Glad you’re feeling better and I hope the next flare is far, far away!
Knitting is the best!! I’m feeling so good lately I even took the spinning wheel out. 🙂 I’m totally making hay while the sun shines,,, or in this case, spinning in the flare-free days of springtime.
I’m sorry you’ve had a flare. I’m more sorry about the way the medical professionals react. Treating your symptoms with knitting is best because you know it works:)
I think that it is a defense strategy on their part; they can’t do more so they discourage the whiny complaints. I’m over it. You are right, the zen-like peace of knitting, the creative process, and pride of achievement are invaluable components of my treatment plan.
So is blogging:)
Ugh. It is so frustrating when they do that. I mean, I totally understand it is frustrating for them too. But as patients in flares, we can become desperate for any help.
Exactly! Her reaction made me feel that I shouldn’t mention ongoing symptoms that are really impacting my quality of life like swollen joints. I asked my physical therapist if I could do pilates, and he said NO! Not with joints this swollen! I felt validated to be told I shouldn’t attempt yoga either. 🙂
After that last flair I’m having trouble bending my elbows: the skin is getting smooth, shiny and tight. I should have mentioned that to the rheumatologist but everything went off the rails. I hate this illness!
I am so sorry you are having these difficulties! Also sorry that your doctor that you trust threw you for a loop – that is always difficult to handle. Stick to your guns and keep doing what works for you!
Thanks! She is a good doctor, and I am doing really well under her care. I won’t be caught off guard next time now that I understand why I got so defensive.
Sometimes stuff just pushes our buttons and we react before we know why.
Sadly, this is true!
Thank you for sharing this, Marilyn. Your ability to step back, process these set-backs, and move on with new resolve never ceases to amaze and inspire me. I am out here rooting for you every single day. ❤️
Thank you Melinda. That means a lot to me! 😻
Glad you are on the other side of a flare up! Sometimes, doctors just don’t think about what the words coming from their mouths sound like. They ought to watch out…you have pointy sticks and you know how to use them. 🤣 Thank goodness for knitting and squishy yarn in all the colors of the rainbow. ❤
What a good idea; next appointment I’ll take my knitting with me so I’m weaponized! Thank you for the laugh!
Weaponized 😂 That doctor better watch out