Scleroderma News ​columnist, Amy Gietzen, shares her thoughts on chronic illness and relationships

I’m a lot of work, even on a good day. Living with scleroderma requires me to spend a lot of time and energy on maintaining my health. Because of this, I often wonder if a potential life partner would think I am worth the emotional and physical effort a relationship would require of them.

Sometimes I feel lonely. I’ll wonder “what if” — what if someone loved me for me? I’m not talking about a parent’s love for a child, or even that of a friend. I’m talking about mind-numbing, all-consuming, once-in-a-lifetime romantic love. I’m envious of those who’ve found their person in life.

I know it sounds like I live in a fairy tale. But sometimes I get stuck in the thought that I’ll miss out on romantic love for the rest of my life.

After living with scleroderma for over 20 years, I have a good idea about what it would take to be a partner to someone who has it. When I imagine my own partner, there are some traits I think are important.

A romantic relationship with a chronically ill person is marked by ups and downs. If you’re starting a relationship with someone who has scleroderma, you should be prepared for the fact that it won’t be easy. It requires patience, communication, and understanding by both partners.

 ​When I'm frustrated with myself and my body, I see my biases at work - by Lisa Weber from Scleroderma News

I sat on the shower floor in complete exhaustion, a scrubbing brush in one hand and a natural disinfectant in the other. Physically, I was at my breaking point. But the shower was only half-done.
It’s tough throwing in the towel, but my body sometimes just doesn’t cooperate long enough to complete certain tasks. And if I push past the pain and exhaustion, I risk a major flare-up with unrelenting inflammation and fatigue.
So I did what was best for my body. I tapped out and crawled out of the bathroom. I managed enough strength to plop myself on my bed to rest and brainstorm a solution. Failure only happens if I quit!
​Finding tools to adapt to my limitations
​Did you know the internet has a wealth of results for the search “disabled cleaning tools”? Accepting disabilities caused by my scleroderma doesn’t make me weak. Strategically planning ways to stay independent gives me power over my shortcomings. It takes emotional strength to be unstoppable, and that’s what I strive for each day.
One search turned up a power scrubbing brush, a hand-held pole with a spinning brush to make scrubbing surfaces easier. I was so excited about this new purchase and couldn’t wait to clean the rest of my shower with no effort!
And when that box showed up on my doorstep, I acted like a kid on Christmas morning. I tore open my package, gave it a full charge, and dashed straight to the bathroom to test it.
It started out fantastic! Cleaning bubbles coated each tile, and the brush spun around like helicopter blades. I could clean all day with this nifty tool! I even imagined my future self sipping a glass of wine while nonchalantly moving the pole around.
But there was one problem: The motor died before the last wall was finished. Perhaps I received a defective product? Perhaps my definition of “clean” is too exhausting for any tool or person in this world? I’ll definitely try another brand before giving up, but this experience taught me an important lesson.

How to cope when even a well-meaning phrase can cut daggers by Amy Gietzen from Scleroderma News

“Wow, you were just discharged from the hospital? You look healthy to me.”
I can’t remember a time when words have hurt me more.

According to the U.S. Centers for Disease Control and Prevention, more than 53% of Americans are living with a chronic medical condition. As startling as that statistic may be, chronic illness, especially scleroderma, tends to create an extremely isolating way of life.

Scleroderma has a way of singling you out, maybe because no case of scleroderma is like another. This uniqueness can include symptoms both usual and unusual, and some of them are invisible to an onlooker. This leads to misconceptions about our physical complaints, one of the more upsetting aspects of living with scleroderma.
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These misconceptions are often packaged in scornful condemnations and accusatory statements of laziness, forgetfulness, or well-meaning ignorance. The reality is that just because we look OK, it doesn’t mean we are OK — physically or emotionally.

Researchers study high levels of the ADAR1 protein in macrophages by Margarida Maia, PhD

The protein ADAR1 occurs in great amounts in macrophages, a type of immune cell that appears in the early stages of systemic sclerosis (SSc), making the cells more active and stirring up a “turmoil” of inflammation, a mouse study found.

Researchers also observed that mice in which the disease was induced by injection of a chemical — bleomycin — developed fewer symptoms in their skin and lungs when engineered to have ADAR1 deficiency in macrophages. Their macrophages also made fewer certain inflammatory molecules.

The findings suggest that “targeting ADAR1 could be a potential novel therapeutic strategy for treating sclerosis,” the researchers wrote.
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The study, “ADAR1 promotes systemic sclerosis via modulating classic macrophage activation,” was published in the journal Frontiers in Immunology.

Case study highlights option of a second stem cell transplant for relapsed SS
by Patricia Inácio, PhD 

A 42-year-old man with scleroderma responded well to a second stem cell transplant after experiencing a disease relapse with lung involvement following his initial transplant, according to a recent report.
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Improvements in skin thickening and lung function were quickly seen, and the patient was still in remission two years after the procedure.

The study, “Case report: A successful second autologous hematopoietic stem cell transplantation in refractory systemic sclerosis, with positive effect on skin involvement, pulmonary function and microcirculation,” was published in the journal Frontiers in Immunology.

As 2022 comes to an end, I’m reflecting on the year and trying to look forward to all 2023 might offer.

Many adults are probably excited to ring in the new year in style by going out on the town or enjoying a few drinks with friends. Sometimes I envy people who can spend a fortune on lavish outfits and expensive bottles of Champagne, and eat filet mignon and lobster tail in celebration. I long for the days when my only problem was deciding what to wear when I went out at night.

The last time I went out for New Year’s Eve, I was 20 years old. At that point, I had recently been diagnosed with scleroderma and was in denial about my disease. So I behaved as if I were unaffected by symptoms, brushing aside the pain and discomfort and forcing my body to continue as normal.
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I made plans to go out with close friends to celebrate at a local bar. Sounds normal, right? Unfortunately, my evening was anything but normal. I ended up getting sick after one sip of my cocktail and had to leave immediately. I became sick several times on the drive home and had to pull over to vomit.
I couldn’t understand what was wrong with me. In my mind, I was fine, when in reality, I was having a serious scleroderma flare-up.

A dash of humor often helps me get the reaction I want from concerned others by Lisa Weber

Scleroderma knows how to be a Debbie Downer. I can be enjoying a moment and BAM! Some debilitating pain or body malfunction pops up to ruin it.
I can’t control when I’ll need to hit the pause button on our fun, but I can control how I approach the situation so I don’t become the equivalent of the lights going out at a party.
Having become a pro at living with pain and limitations, I’ve learned that if I share why I can’t do something, people understand. But they also show pity — which makes me feel even worse!
I discovered that if I use colorful, silly descriptions to share the why behind my limitation, I cushion the negative impact it has on the company I’m with.

Explanations require careful thought
My husband and kids were so excited to be at the Tampa Bay Lightning hockey game. We walked endlessly around Amalie Arena looking for an elevator to take my broken lungs to the top floor. With the game about to start, I could see their excitement shifting to frustration.
My youngest sighed and said, “Can’t we just take the stairs?” I know I should’ve taken a moment to explain how that could backfire, but I have a toxic trait: I think I can overcome any challenge.
Without hesitation, I turned toward the stairwell and braced myself mentally for the battle ahead. My husband sounded the alarms and did his best to discourage me. But stubbornness is my other toxic trait.
I made it up the first flight of 30 to 40 steps, but it didn’t feel good: burning lungs, pounding heart, shock waves of pain, as well as complete disorientation while my vision spun around and around.
It was no surprise that I needed to take a break. Without question, my family huddled around me while I leaned against the wall in full concentration, practicing mind control so I wouldn’t panic.
“Are you ready, Mom?” my teenage daughter asked, with anxiety in her voice.
Here’s where I could’ve said, “I just need another minute.” But if I know teen girls, I’d probably get a quick eye roll. And if I shared the truth, “I just need a minute or I’m going to pass out,” I’d get those uncomfortable, concerned looks of worry.

The holiday season is often a happy time. Giving gifts, spending time with family, and celebrating with food and conversation bring joy to many people. But for me, the holidays bring longing and envy.

Christmas has always been significant for my family. While we’ve always held parties on Christmas Eve, Christmas Day, and the following Saturday, we tend to celebrate throughout the entire month of December.

​Growing up, I really enjoyed this. What’s not to love about baking cookies, having gift-wrapping parties, and decorating the house inside and out?

It wasn’t until I was diagnosed with scleroderma in 2001 that I started to find the holidays unenjoyable, exhausting, and lonely.

Feeling like a Scrooge
The first Christmas after my diagnosis was complicated. I knew nothing about scleroderma or what my future might entail. Everything was new and scary.

That year, I decided not to share the details of my illness to avoid the pain of telling my loved ones that I was sick. So I zipped my lips and tried to fake my enjoyment of Christmas.

By the next year, my entire family was aware that I had scleroderma. For the most part, they acted as if nothing had changed. No one asked me about my health or how I was coping, and I was thankful for that. I felt so awkward and uncomfortable in my skin that I was glad my family decided to avoid the topic.
Unfortunately, I wasn’t so lucky moving forward. Every Christmas thereafter seemed to be worse. One year, a young relative asked me why my fingers were “broken” and if they hurt while we were all eating Christmas dinner. Another year, I was gifted a pair of gloves that didn’t fit because my fingers were so contracted.

The final straw was when I contracted shingles on Christmas Eve. I ended up isolated in my room while my entire family gathered to exchange gifts and eat dinner.

As the years ticked by, the season felt more and more different. Cousins grew up, married, and started their own Christmas traditions. Older uncles and aunts passed away. My siblings moved out and stopped spending so much time at home for the holidays.
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I know people change and grow, and families expand and evolve. But I began to feel lonely, cemented in place and stuck living a life where nothing changed. Scleroderma was constantly raining on my seasonal parade. Christmas had gone from being a joyous occasion to a holiday I couldn’t care less about celebrating.

Blood levels of the periostin protein were associated with the degree of skin and cardiac involvement, but not lung or blood vessel involvement, in people with systemic sclerosis (SSc), a study found.

Levels of the protein also were higher in patients with diffuse forms of SSc, those living with the disease for a shorter time, and in male patients.

Findings overall suggest that periostin may be a useful biomarker for predicting disease severity, particularly cardiac complications, in SSc.

“To our knowledge, this is the first study to show that periostin is elevated in SSc cardiac tissue,” the researchers wrote, noting that “future work will need to prospectively investigate periostin levels in SSc patients.”
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The study, “Periostin overexpression in scleroderma cardiac tissue and its utility as a marker for disease complications,” was published in the journal Arthritis Research and Therapy.

People with systemic scleroderma (SSc) who test positive for cyclic citrullinated peptide (CCP) antibodies are more likely than those who test negative to develop interstitial lung disease (ILD) — when the lungs become scarred — and have worse lung function.

​That’s according to data from a South Korean study that included people with systemic lupus erythematosus (SLE) or myositis, disorders with symptoms that sometimes overlap with scleroderma.
The study, “A retrospective analysis of the relationship between anti-cyclic citrullinated peptide antibody and interstitial lung disease in systemic sclerosis,” was published in Scientific Reports.

A CCP antibody test looks for anti-CCP antibodies in the blood. They are a type of autoantibody that wrongfully turns against healthy tissues in the joints.