The Scleroderma Chronicles: Rolling Dice with the Reaper

I’ve been collecting new diagnoses over the last year like an out-of-control yarnaholic shopper at a fiber festival. Yeah, that bad. That’s how my yarn stash got so out of control… I mean, you never know when you will need that fabulous color in the future, it is one-of-a-kind, and it’s cashmere… Anyway, let’s get back to the topic at hand. The last year has been really eventful, and the new tests, diagnoses, and drug interventions keep rolling in. Here’s the chronicle of events:

  • An early summer echocardiogram last year showed that I had developed a type of heart failure called diastolic dysfunction. Scleroderma is causing scar tissue to form in the muscle of my heart.
  • On September 1st I had a right heart catherization that showed that I had a hole in my heart that was disrupting the flow of oxygenated blood to my body. Oh. That explains those blue lips I’d been sporting around town.
Remember the BLZ?
  • Follow-up testing showed that I had exercise-induced pulmonary arterial hypertension. I was started on drugs to treat the condition.
  • I went into a flare of my systemic sclerosis (scleroderma) symptoms because of the increased blood flow due to the drugs.
  • Testing in February to hunt for the cardiac shunt (hole in my heart) revealed that there was something going on with my lungs. A subsequent CT scan in March showed that I had developed autoimmune pneumonia in both lungs, a condition called interstitial lung disease. The cause of the ILD was confirmed by a lung biopsy in May. Yep. It is scleroderma related, but I was still forced to get rid of all my down products in the house. I miss my down comforter…
  • All summer long I have gone through a staggered course of drug interventions as my doctors worked to get my lung disease under control.
This sunflower is a pretty good metaphor for how I’m doing at the moment. I’ve taken a beating, but I’m still blooming, by golly!

So, I’ve been taking a lot of drugs, and all of them carry some side effects. I became dizzy from one, my blood sugar zoomed up, and my vision became foggy. Another is causing hot flashes. One of them causes muscle pain, and a couple of them are seriously interfering with my sleep. Two drugs cause edema, so I’m taking another drug to combat that. Two weeks ago, I started the last drug on the list, Ofev, which has a list of side effects that made me pause a few days before taking the first pill.

Nausea, diarrhea, vomiting… well, okay. That’s stuff that I deal with all the time because of scleroderma…

Liver damage, heart attack, stroke… say, what? Seriously?

I had to go through a 30-minute phone interview with a pharmacist before the first 30-day shipment of the drug could be sent to me. I will need to get blood work done every single month to check my kidneys and liver before I can receive the next 30-day shipment. I need to be vigilant about watching for bruising and the symptoms of blood clots, including heart attack and stroke symptoms. One of my sons is checking in on me daily.

Time for a baby bunny picture, don’t you think? One of the best parts of the summer. 🙂

So, here’s the deal. I’m in a lot of online support groups where people are afraid to take drugs to treat their systemic sclerosis (scleroderma) because of the side effects. We live in a world where people are afraid to get vaccinated because of possible side effects. We live in a world where people are resistant to wearing a mask because of… well, they will tell you. They have more reasons than I have time to list, quite frankly.

This is kind of nuts, in my opinion. Did you see that list of diagnosed conditions? Yikes. Not good, little BLZ, not good. I’m facing down some really serious stuff here, and I will take these drugs, get through the side effects, and fight this like the hail-battered and grasshopper-savaged sunflower that I am!

Two weeks ago, I gulped down the first Ofev capsule. All those nasty GI symptoms arrived and had their way with me for several days, and then I was through it. I’m now on the final doses of all my drugs, and the sleep disruption is improving, the dizziness is gone, and the muscle pain is receding. I’ve learned to never, ever drink elderberry juice, and that green chili actually improves GI inflammation. I can do this, yes, I can!!

My niece referred to my battles with my disease and the drugs that I take as “rolling dice with the reaper”. I guess that is a one way to look at it. The other way is… you have to play to win. I chose to take the drugs; I chose to play. Hand over those dice, reaper!!

Last week I went to get my first follow-up CT scan of my lungs. “You can take off your mask, if you’d like,” said the technician. Nope! No one with a list of diagnosed conditions like mine should take off their mask in a diagnostic facility attached to an urgent care center. I roll more dice than I should as it is! Grumpy, the technician did my CT scan while I kept my mask on.

The message from my pulmonologist came last night. My lungs show improvement, and there is no new fibrosis.

Take that, reaper! I win this roll!!

Scleroderma: Shine like a Sunflower!

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.

23 thoughts on “The Scleroderma Chronicles: Rolling Dice with the Reaper”

  1. I’m sorry that you’re going through such a rough patch(es) and I admire your stance to fight back.

    It’s great news that your lungs show no recent scar formation 🙂

    Can you replace down comforters with woollen ones? Wool is pretty lovely too. It’s naturally termoregulating, anallergic (mites don’t like it) and very cozy. I sleep better with a wool duvet and on a wool mattress – although it might not be suitable to all, of course.

    All the best ❤

    1. It has been a rough patch; now that I am through it two of my doctors have told me that they were concerned while I was in the ICU. All water under the bridge now. 🙂 I think that the luck in this is the fact that this came on so quickly, and was picked up within weeks of the onset, so we are ahead of the fibrosis curve. Then there is the impact of all the drugs. Yay!

      I sadly bought a down alternative comforter to try out for now. Wool is tempting, but I live in terror of wool moths after dealing with an outbreak about 10 years ago. Right now it is 100 degrees outside, so no rush. 🙂

    1. Oh, I’m just trying to represent for all the others who are dealing with the flaming bags of sh*t that life has sent their way. The truth is, I don’t blog on the days when I’m struggling or feeling sorry for myself, so you hear from me when I’m at my best.

      If I convince even one person afraid of drug side effects or a vaccination, this will have been a good post. 🙂

    1. 🙂 I have discovered that most people struggle with facing reality when it comes to a chronic, progressive illness, so they focus on the side effects of the medication and overreact to any positive gains. So many people in my support groups are trying to go “natural” with diet and supplements to control their illness and talk about cures. I represent where I can. In my opinion, this is a “go big or go home” situation, so I encourage people to do a pro/con risk analysis as there is no escaping all risk for patients like me. It’s easy to stop a med, but reversing heart/lung damage is another issue.

  2. Very happy to hear your lungs have no new scar formation! So difficult your fight. I wish so much you weren’t going thru this.

    I was just told my pulmonologist he believes my RA is attacking my lungs. Nothing showing up on CT scan but I have a couple of big red flags for lung issues since pre-Covid and they have not really recovered from Covid. Waiting on another RA med to see if that works to tamp the inflammation. I know people with RA who refuse to go on meds and try the “nutrition” route but with an autoimmune disease that is a huge risk and I think they’re crazy. Yeah some of the side effects are truly awful and toxic with a lot of the meds, but hey it’s the chance we take and the alternative is not better.

    1. Oh, no. I hope that it is leaving your lungs alone, but it is always better to get diagnosed and on treatment as soon as possible. The type of CT scan that I get is a high-density CT scan (HDCT) without contrast. I guess the absence of contrast is important. Also, they can pick up on lung disease with a pulmonary function test. I have inhalers, and the rescue inhaler does nothing for me, but the steroid inhaler did help for a while.

      Not only do I know people who are going the nutrition route, but there are others who are trying antibiotics protocol, and then the “natural” medicine people who rely on naturopathic providers. I think that it important to distinguish between symptoms that are making your life miserable (like muscle/joint pain or GI issues), and hidden things like scarring in your heart muscle or the loss of lung tissue. It is just crazy to think that you can get an autoimmune disease into “remission” with essential oils. The side effects are miserable some days, but they are better than the alternative. I have noticed that there are people in the online forums who really regret stopping meds as they were impacted by severe complications down the road. It is hard to balance misery today against unknown misery in the future that you were spared by taking the meds, but that is the game we play.

      1. I have restriction in my lungs on my PFTs, and lung nodules on my CT, two big red flags with RA, so he’s keeping an eye on things. What it really acts like is a very severe asthma which I think both Covid and RA can do. Hopefully nothing will develop and it’ll eventually settle down, thanks I’ll remember that about the CT!

        Omg some of those people are nuts lollll… yeah if essential oils could do it all of us would be using them!

      2. I have a lot of lung nodules. 😦 They have been pretty stable since I started treatment, so yay! I do hope that you aren’t developing ILD, but I have to say that the treatment is getting much better!

        Yep, they are clutching at straws (well, essential oils, actually…) in the hopes that all well get better. Yikes!

    1. I’m a fan of go big or go home… and to be as cheerful and positive as possible while I’m at it. It really helps to have the cats, the knitting, and my garden. I would be going crazy if I was trapped in a little apartment with no cats!

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