The Scleroderma Chronicles: World Scleroderma Day, 2022

Wow, it is that day of the year again. The Niagara Falls will turn teal, Scleroderma organizations around the world are sending out messages and videos, and patients with scleroderma like me are wondering how best to showcase our conditions in a meaningful way. Here in the US the theme is Know Scleroderma. In Australia it is Shine Like a Sunflower.

The whole idea is to educate the public about this rare disease that pretty much flies under the radar to help secure support for patients, funding for research, and awareness of treatment options. Patients are encouraged to tell their stories and to do what they can to expand scleroderma awareness in the public eye.

Well, shoot. I do that all the time! I wrote about World Scleroderma Day last year and I kind of like what I wrote. I talked about what was going on in my illness and the progress that I was making in getting diagnosed and treated for the significant organ damage that was underway in my lungs and heart. I also mentioned the similarities between Covid-19 and systemic sclerosis (the type of scleroderma that I have), and the fact that people like me are still dealing with lockdown. You can read that post here.

So, what has changed in the last year and why am I typing away on my computer once again about World Scleroderma Day? Well… awareness and support are the messages that I’ve been urged to put out, but I’ve been reflecting on what I’ve learned this year and how it might be useful to others. This was a huge year for me… I was diagnosed with pulmonary arterial hypertension, a complication of systemic sclerosis that is developed by about 15% of patients, and I was also diagnosed with interstitial lung disease, another complication of systemic sclerosis that is also developed by about 15% of patients. These serious complications develop so routinely around the 15% mark that there is now a rule of thumb about it in treating patients with systemic sclerosis. There are other conditions that fall into the 15% rule, and I have two more of them: Sjogren’s Disease and diastolic dysfunction.

MacKenzie and I from a posting a few years ago.

So, I am getting a lot of experience in dealing with being sick in a way that is not visible to the public and is not the first thing considered when you head into a doctor’s office seeking help for debilitating symptoms that have no obvious cause. I have been successful this year in becoming an active participant in my own health care and I love my team! Here are my lessons learned:

  1. Physicians tend to diagnose with the most common condition that matches your symptoms. You know, if you are struggling with fatigue, it must be depression or sleep apnea…
  2. They also tell you to stay off the internet.
  3. That works great up to a point. Get onto the internet!!!! Look up the symptoms and treatment options for the condition/illness that your physician is talking about. Do they really fit? Go ahead with the testing that your doctor orders but continue to educate yourself. Get the full text of any testing reports (those are your tests on your body, so do insist… nicely…) Look up crazy words that you don’t understand.
  4. I should include here…DON’T PANIC… about any crazy-ass, scary condition that you run into on the internet that you think you might have. I mean, what could happen? You already are sick, and you won’t get magically worse overnight once you get a name for it. You might, however, get some really helpful treatment that could turn things around for you. That is, if you have that crazy-ass, scary condition that you really, probably, don’t have. DON’T PANIC!!
  5. What if you get test results that say “you are fine” and your doctor pretty much is ready to stop there? Um… go right back to specific test results and symptoms to reset the conversation. You know, “my face is still blue, and the latest CT scan showed that I was losing tissue in my lungs. What other testing can we do to figure out what is going on?” is exactly where you should redirect the conversation.
  6. Make a list of your symptoms and track them in a journal or on a calendar. Document stuff and then contact your health care provider (email works great!) with your concerns and the symptoms that you are noticing. Specific data helps a lot, and the written record makes you more credible and your health provider more accountable.
  7. Do not let a medical health professional dismiss or disparage you. Kick them to the curb and get another. On the other hand, don’t go doctor shopping to get the diagnosis that you want; that is not productive for you or anyone else involved in your daily struggles.
  8. Ask your physicians to communicate with each other and make sure that they include your primary care physician in any messaging.
  9. Remember to be kind to others: your doctors, the nurses, your family, your friends, and yourself.
  10. DON’T PANIC!!! at any time. Remember, feeling powerless and not knowing what is happening is stressful. Learn everything that you can, do everything that you can, and then sleep well at night. Hugs to anyone who finds this meaningful.
More lavender for my garden!

There. Those are the best, most excellent lessons that I learned this year. Today I am out of the serious flare of the winter and feeling pretty darn great. I am on steroids, and my immunosuppressant drug’s dose has been doubled; I feel more like myself than I have in a couple of years. I headed out on errands this afternoon, bought a Starbucks, and signed up for a Tour de Fleece team at my local yarn shop. I bought some new lavender plants that I am going to put into the ground this evening and I am cleaning up the spinning wheel to see if I can get some paco-vicuna spun next month before my steroids get stopped.

I have some really serious conditions that carry a significant risk of a poor outcome. And yet, I feel a little like an imposter as I laugh and interact with other people that I encounter. The man at the drive-through window at Starbucks traded cat photos with me. The lady at the yarn store and I laughed and talked about spinning wheel misbehaviors; are the wheels worse if you name them? Behind the mask, I am still me, the old me; I may have scleroderma, but it doesn’t have me. I am kind of the poster child for what an invisible illness looks like, and that’s why there is this campaign today to “Know Scleroderma.”

Those serious conditions that I mentioned… they are complications of scleroderma, but they happen for other reasons, too. Some are rare, but some are not. Knowing about scleroderma can help with research efforts into these other conditions (sadly, some are now more common because of Covid long haulers), and perhaps the lessons I have learned will help others in their efforts to secure empowerment and medical treatment.

This is World Scleroderma Day.

Shine Like a Sunflower!

Hannah and the CoalBear: Caturday, 6/25/22

Hi. CoalBear here.

I’ve been entertaining the Mother of Cats all day because, frankly, she is in a slump.

Well, now that I think of it, she should be in a slump. The only day this week she was frisky was Tuesday and look at what she did to me!!

She took me to the vet!!!

People, this was the most horrible thing that has ever happened to me. I got stuffed into the carrying crate and before I knew it, I was in the car. We ended up in a strange building with other people and DOGS and I kept crying, and the Mother of Cats just ignored me and took me to a little room where I had to COME OUT OF THE CRATE!!!!! I got weighed, physically cathandled by a strange lady, and then there were the SHOTS that I absolutely did not deserve because I am the best boy ever. You want to hear the worst thing about all of this…. Hannah exercised her right to refuse and didn’t have to go the vet. I think that she was laughing when we got back home again.

Okay, back to the week. The Mother of Cats is taking lots and lots of new pills now and parts of her don’t feel good because of the side effects (let me tell you about the side effects of those SHOTS!) so I am doing my best to be cute.

She finished her little quilt and hung it up on the wall behind her knitting chair.

The Mother of Cats used clear plastic push pins to secure the tops and corners of the quilt. I have been pulling the pins out of the bottom of the quilt and taking them upstairs to play with. I left both of them on the bathroom floor where she would be sure to find them this morning so she can put them back into the quilt again. Wasn’t that good of me?

I’ve also been trying to help her with her knitting, but she seems to be in a slump. She isn’t knitting much, and the stuff she has going is… boring.

Do you see how boring this knitting is? The pink blob is a sweater… maybe. The blue is going to be a pair of socks someday, and that pastel smish of funny colors will someday be a hat. Where are the cat toys? Hello? How can I be cute and entertaining if I don’t have all the toys in the world…

Although, I think that I am pretty darn cute with the toys I have now!!!

Well, I guess that is all for now. It is almost time for the baby bunny to come out in the back yard. Show time!

Mateo the CoalBear

Notes from the Mother of Cats:

  • I did get Hannah into the crate at least three times, but she was too strong for me and managed to push her way back out before I could get it zipped closed. She has another appointment next month and I’ll try some new strategies.
  • I’m in the middle of a big drug push to get my lung disease under control; I am breathing much, much better and I have more energy by far than I did a couple of months ago. The downside is… side effects. My doctors are running frequent blood tests to monitor my progress, adding more drugs to control symptoms that are concerning, and so far, things are going well, but I am pretty much homebound with pain, blurred vision, and dizziness. Two more weeks of the steroid push to go and then I start to get tapered off. Yay! I’m dealing with a lot of tendon pain as my immunosuppressant dose is doubled, but that has happened before and I’m hopeful that there is an end in sight.
  • What type of side effects, you ask? I gained 12 pounds in two days and my blood sugar soared into the high 100s. Opps.
  • I am getting out into the garden a little and there is a new rose bush waiting for me to plant it. Someday soon, little guy.

The pictures above are my morning pills, the braces that I now am back in because of tendon pain, and my new, beautiful rose. The name of the rose is… Easy Does It!

Just the rose that I needed for the week.

The BioGeek Memoirs: Sunflower

Okay, I need to be complete upfront about this: this is a crossover post. It is going to be a total amalgamation of the Scleroderma Chronicles and The BioGeek Memoirs because I just couldn’t come up with anyway to make them separate posts. Hey, I’m a biogeek with scleroderma. It was bound to happen eventually…

So, let’s get this ball rolling by talking about bean plants. That makes a lot of sense, right? When I was a biology teacher struggling to make plants interesting and to help students understand experimental design, I came up with the genius idea of letting the students design an experiment looking at the effect of fertilizer concentration on the growth of bean plants. The students had solutions with different concentrations of Miracle Gro fertilizer available to them, and then they had to struggle with planting and growing 6 bean plants while holding all the other variables constant. The plants grew, the students measured their growth, and then they charted the growth to make decisions about the best fertilizer amount.

I had the hot idea of using an Excel spreadsheet to display the student data to the whole class. That worked great! I then combined the data from all 5 classes together and… it was a huge mess. The plants were all different heights depending on which class was collecting the data. The students weren’t making any errors; the bean plants were raising and lowering their leaves each day in circadian rhythm. Depending on the time of day, the plants were a different height. Oh. Plants can move!

Sunflowers have been on my mind a lot recently. Beautiful sunflowers, whose faces turn throughout the day to follow the sun. My cousin grew enormous sunflowers one year that towered over the other plants in the garden. Sunflowers are the symbol of Ukraine. The sweater that I am knitting right now is in the colors of a field of sunflowers with their faces in the sun.

Those aren’t sunflowers, but the colors remind me of all the “Support Ukraine” knitting that is going on right now.

There are enormous fields of sunflowers near the airport in Denver that are just spectacular in the late summer. Early one morning in late August,2014, I drove past them on my way to my first appointment with a rheumatologist; my primary care physician had referred me to a specialist after some concerning bloodwork results. I was pretty sure that this morning was going to be a turning point in my life, and I was nervous and kind of fighting off tears. Behind me the rising sun poured light onto the glowing faces of sunflowers ahead of me as far as I could see; the sight was just thrilling, and I settled right down. An hour later the rheumatologist explained that I had limited systemic sclerosis (a form of scleroderma) and Sjogren’s disease. I was prescribed medication, sent for more testing, and told to stay off the internet. I looked for the sunflowers as I drove home that afternoon, but I couldn’t see them; the fields were too far from me as I drove east. Still, just knowing they were there sort of helped. Sunflowers. They were kind of a symbol of hope and the promise that I could handle anything.

Are you ready for this? The sunflower has been chosen as a symbol for scleroderma by Scleroderma Australia. Shine like a Sunflower is their campaign this June to bring scleroderma into the light of awareness.

Just like that the sunflower became an international symbol for scleroderma. I swiped this shirt image off of Amazon.

Why a sunflower? Well, like sunflowers, we scleroderma people follow the sun. Strong sunlight is actually a problem, but the warmth… bring on the warmth! For the last few weeks, I have been recovering from surgery and waiting for my biopsy results. I have been sitting outside on my deck out of the direct sun, soaking up the heat and light. Day by day, I have been improving and no longer need daytime oxygen support. My cardiologist has restarted the medication that was halted while I was in the hospital, and it hasn’t even caused a bump in my recovery. Heat and sunlight are really making a difference.

My biopsy results arrived on the first day of June. I have developed a type of interstitial lung disease that presents as hypersensitivity pneumonia. I also have the characteristics of what the report called a vascular/collagen autoimmune disease, which is pretty much a descriptor for scleroderma. Yep. What my pulmonologist prepared me for. This is interstitial lung disease associated with system sclerosis (SSc-ILD) and I am going to get started on an increased dosage of immunosuppressants and a new drug to prevent scarring in my lungs called OFEV. This drug is really new; it has been developed in the years since my diagnosis, and now it is here just when I need it.

June is Scleroderma Awareness Month. Here in the US the theme of the campaign is Know Scleroderma. Oh, I know scleroderma, and so do some of you through my blog. Let’s put scleroderma aside for the time being and go back to sunflowers. And science. Remember that this post started with a little story about doing a science experiment with bean plants and my students? As simple as that was in my classroom, the heart of that process, curiosity, scientific experimentation, and data manipulation, is serving me well now. Ironically, new therapies and treatment approaches are being developed because of the lung scarring caused by Covid-19. Science. It rocks!

Today I planted these sunflowers along my side fence.

This afternoon I am once again outside in the warmth and light, knitting on my new sweater in the colors of sunflowers against the sky, admiring my beautiful newly planted sunflowers. They have their little faces angled to the southwest, following the sun as it starts to dip towards the Rocky Mountains.

Beautiful, tough, follow-the-sun sunflowers, reminding me to also follow the sun and to shine when I can. They remain a symbol of hope and a promise that I can handle anything.

Shine like a Sunflower.

June is Scleroderma Awareness Month. You can learn more about scleroderma at these links.