The best scleroderma caregiver knows when to just love me

We toasted to 18 years as a married couple while looking out over Tampa Bay, Florida. My amazing husband, Ross, had planned out every detail, from the surprise dinner reservations in the city to the romantic sunset-watching at the park. If you know me, you know pulling off a surprise is nearly impossible. Ross endured a week of grilling questions and still kept the itinerary under lock and key.

Although it was a beautiful night, we had to accommodate my blue-toned hands, a result of Raynaud’s, and sit indoors. But we moved forward with the evening and didn’t pay my disease much attention. And even when my gastroparesis limited my options on the menu, we chose to ignore it for the night and focus only on the happy memories we’ve built together.

I even drank wine without worrying about the insufferable inflammation it would cause the next day. Because every now and then, it helps to take a vacation day from scleroderma.

Recommended Reading

January 18, 2023 Columns by Amy Gietzen

Finding Love While Living With Scleroderma

Sometimes this disease gets the best of me

After dinner, Ross and I began our walk to the park. Holding hands and carrying on about our dreams, I noticed it was getting harder to breathe. To calm my short gasps, I stopped talking and immediately started doing diaphragmatic breathing exercises. I took slow breaths in and filled my stomach like a balloon.

The feeling of suffocation didn’t stop, so I checked our pace. But we were already walking slower than snails. A tiny moment of panic set in and I knew I needed to stop before I passed out. I set my sights on a bench a few steps ahead and pushed toward it.

Ross could tell I was in duress, so he continued to talk about happy memories without asking questions. He rubbed my back gently to let me know he understood.

When you’ve lived with scleroderma for nine years, you develop strategies that help you through the challenging moments. And this is how we’ve learned to cope. We don’t panic right away. We take it easy and let time decide our next steps.

Once my breathing stabilized, I looked around at my surroundings. The “hill” we’d walked up was such a tiny incline; I think my flat Florida driveway is steeper! Yet my lungs were acting like I’d run a marathon up a mountain.

I looked up at the park and began to cry. No matter how hard I’d tried to leave scleroderma at home, it had followed me to our day of celebration. And that felt like defeat.

I looked at Ross and cried, “I’m sorry. We need to go home now.”

He smiled, wiped my tears, and said, “Good! There’s a movie I think we’ll like and I’ll stop and grab dessert on the way home.”

How did I get so lucky?

Caregiver or loving spouse?

Ross has an exceptional talent. He knows when it’s time to be a caregiver and when it’s time to be a loving spouse. It took many emotional conversations to get to this point, but we’ve learned what I need when my body fails.

In my toughest moments, he knows I need to feel seen and heard. I can relax when he recognizes my symptoms, knowing I’m not alone in the struggle and that he’s on standby. It’s the simple back rub while I catch my breath.

Ross knows not to ask if I’m OK. Because the truth is, I’m not! No one feels comfortable while struggling to breathe. No one should have to suffer from a disease. When my symptoms hit, I don’t know what the end result will be, so asking if I’m OK is pointless.

Another way Ross helps me through my challenges is by making decisions. Instead of asking me what I want to do, he comes up with a game plan and executes it. More importantly, he makes me believe it was his plan all along. He doesn’t make me feel like I have to apologize or that he’s missing out.

On our anniversary night, I didn’t need anything except a change of plans to accommodate my symptoms. He empathized with me and helped us continue the celebration with last-minute adjustments. I didn’t need a caregiver, so he gave me love instead.

The gentle back rub and movie cuddles were a gift far greater than a sunset in the park. But if I had focused on what I couldn’t do, I would have missed out on the magic of being loved.

I don’t know why it’s getting harder to breathe. My doctors are still running tests. For now, all I can do is live in the moment. With eyes wide open, I’m able to experience the greatness that can shine through my disease.

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.