I had the joy of personally interviewing our guest contributor, Marg K, a few weeks ago. I picked her brain on how she lives well with chronic illness and walked away inspired. She, like so many of you, is an unsung hero. Marg is a kind, warm soul living with scleroderma, pulmonary fibrosis, pulmonary hypertension, fibromyalgia, RA, antiphospholipid syndrome, AFIB and MCTD. When she agreed to pen a guest post for me, I was thrilled.
You’ll read more about our interview in the coming weeks, but first, take a peek into Marg’s inspiring journey.
My Scleroderma Journey by Marg K
I’m an optimistic person. I appreciate the beauty in simple things. I believe that the glass is always half-full, not half-empty.
I live with my husband, who is my caregiver and our adorable grey cat. Our beloved daughter is a fifth grade teacher in another state. Our daughter, my sisters, and our many nieces and nephews are great about staying in touch with me. We look forward to gathering together on Thanksgiving each year.
In 2002, I was diagnosed with scleroderma, pulmonary fibrosis, and Raynaud’s disease. In the months prior to my diagnosis, my fingers had become very red, swollen and stiff. They hurt and I could not make a fist. I went to an internist, and he recognized this symptom of scleroderma even though he’d never seen a case before. He had only read about the disease. Fortunately he made the connection between my case and the disease, and I was properly diagnosed. However, looking back I now realize I had various symptoms of scleroderma and Raynaud’s years earlier that were significant and were not addressed. I even had one doctor dismiss me, stating “You don’t seem that sick” although I felt very unwell.
I live with the added challenges of pulmonary hypertension, mixed connective tissue disease, fibromyalgia, and rheumatoid arthritis that has caused severe contractions of six of my fingers. I am antiphospholipid syndrome positive. I’ve recovered from cardiac and pulmonary effusions that caused AFIB, leading to heart failure and a two week stay in Cardiac Intensive care. I’m a bionic woman, though! Due to loss of cartilage in my joints, I now have a fabulous titanium hip and elbow.
After a thirty-year career in publishing, I retired on permanent disability in 2008. I’m expertly cared for by specialists; including a Rheumatologist, Pulmonologist, Cardiologist, Gastroenterologist, and a Social Worker who has expertise in living with chronic illness challenges.
I’ve sought and offered support in a Scleroderma Support Group that has been meeting for over two years. We’ve covered a number of topics ranging from useful, adaptive devices we use throughout the day to medical topics that include talks from a pulmonologist, gastroenterologist, physical therapist, dentist and oxygen equipment providers. Our meetings provide a confidential place to get together and share questions, successes, and challenges. I also attend a local Pulmonary Hypertension Support Group.
Scleroderma is a chronic disease that can be very challenging. I’m attentive to what my body is telling me. I’ve learned to really slow down. When I need to rest, I do. I also do not worry about what may never happen. Life is a gift and each day is meant to be lived.
Marg’s Nuggets of Wisdom on Living Well with Chronic Illness
- Be comfortable with your physicians, specialists and rheumatologist
- Enjoy life
- Don’t assume that everything that happens with scleroderma is going to happen to you; everyone is different
- Keep up-to-date on your medical appointments
- Participate in support groups
- Don’t sweat the small stuff