Living With Scleroderma Requires a Good Game Plan
Preparation and self-advocacy have made a difference for this columnist
Anyone living with scleroderma knows it is a difficult disease to manage. As patients, we are constantly flustered by a disease that seems to have no boundaries. Symptoms and treatment strategies vary from person to person, and scleroderma has no cure.
Because of this, every scleroderma patient has the unfortunate task of becoming their own self-advocate, which entails learning through lived experiences. Patients must learn how to keep up with treatments, manage symptoms, and cultivate resources, which include people I refer to as “reliables,” or those I trust, along with medical specialists and others in my support network.
During the first few years after my diagnosis, I had an extremely difficult time finding the appropriate managed care, treatment combinations, and other resources to help me manage my symptoms. Where I live, in Buffalo, New York, treatment and care options were limited and weren’t as advanced as those in even bigger cities. I discovered early on that “scleroderma” was mostly an unknown word in my local medical community. It was like playing sports without a coach.
Not one to sit idly by as my health deteriorated, I mustered up the wherewithal to create a playbook of medical options and other available resources. The following is how I pursued a “W” after my diagnosis.
Preparation is key
I knew I needed to reduce my travel time and costs when medical emergencies happened, so I created a game plan. This was a play-by-play list of what I needed to accomplish to acquire specialized care. I listed my wants and needs in order of importance, and some of them follow.
A million factors come into play during an emergency, so preparing yourself ahead of time can help to reduce stress.
Use your best players
Next, I needed to rally my teammates to help me. I enlisted family and friends to be my eyes and ears. I tasked them with using every available option. Anything that could help us to seek the appropriate location for the best care possible was directed my way. I spent hours on the internet researching doctors, hospitals, and states close to where I lived. The key was finding scleroderma specialists and other healthcare services that were covered by my insurance and fit into my plan.
After months of hard work, I found a good scleroderma center in a major city. I was both excited and nervous about this. But I knew my work wasn’t done yet.
Never let your guard down
Next, I made a list of my “reliables,” or people in my life who could provide me good insight.
I also prepared for what doctors might want from me by obtaining my medical records, which included treatment reports, bloodwork results, and scans. I wanted to paint a clear picture of what my care had been like previously.
Of course, not all doctors and patients work well together, so I needed to prepare for that, too. Sometimes a teammate is drafted that simply isn’t a good fit. Because scleroderma affects so many parts of the body, basic care won’t meet all of my needs. This is why good specialists who work collaboratively are important.
In it to win it
With my parents’ support, I was able to make the journey to Pittsburgh, where I saw a multitude of specialty doctors. Each of these appointments was productive and educational. Both my parents and I were upbeat when we left.
I strongly believe that without a good game plan and self-advocacy, I probably wouldn’t be alive today. The choices I made decades ago may have seemed risky at the time, but I trusted my gut, educated myself, and used the resources that were available.
Endgame
I can’t tell every scleroderma patient how to live with the disease, because each person is different. But I can use my own experiences to provide insight. Some patients, for example, might not have the means to travel long distances for treatment, as I did. But it doesn’t mean they should forgo adequate care.
By working with doctors, patients can find the middle ground. Not every doctor must be a specialist to treat scleroderma. One of my local doctors has been a key player in my wound care and treatment for years. When we started together, he knew nothing about scleroderma. The game changer was that he was willing to learn with me. Use your voice to find what works best for you.
Remember: You are in charge of your body and care.
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.
About the Author
Joy Bobo
I really like your game plan because each of us need to find an advocate to guide us on our journey. You also were able to manage your time effectively.
I told myself that because we have choices in this country it was up to me how I handle my illness. I was given options and chose to go to Virginia Mason in Seattle. I wanted a teacher because this doc would be looking for answers.
I also chose to keep working feeling that keeping up my spirit was very important.
We are our own best advocate and I continue these many years later to remind myself of that as well!! /Joy b
I have survived past the 7 year initial prognosis and feel that the positive lifestyle I have chosen make a difference!!!
Char
I was diagnosed with scleroderma 3 yrs ago. I changed my diet, what I put in my body and what I put on my body. No more make up, hair dyes, lotions, looking for Shampoo and soap that has the less chemicals in it. I make my own lotion, deodorant ,and will continue to search out things that are healthy. I gave up dairy, gluten, things with high fructose, and so many other things. I have learned to cook things from scratch instead of from a box. It was hard to find a doctor that could diagnose me. For two years I felt better. Then it all hit me again. Now I am on medications that help. For a long time I refused medication as I thought they were more harmful then good. Now I know that I can’t live without them. I have done so much research. I have been finally finding doctors that can help and are willing to listen. I live in Montana and not in a big city. I have taken control of my life with God’s help. I don’t sleep well. Only getting about 4 hrs of sleep at night. I’m not able to nap. This is one of my biggest problem, as I believe sleep is when we truly heal. Anxiety is another hard one to deal with. But a lot of that was tachycardia. So now I am on beta blockers. They are helping. Just recently I couldn’t get food to pass through my esophagus. Lost weight that I worked so hard to put back on. They stretched my esophagus again as it was almost closed shut and now food is passing through. Learning to pay attention to chewing food well, small bites, knowing when I am full and not filling my stomach with to much food. There is so much to learn about my scleroderma and what is best for me. I have Reynards disease. So I take gloves with me everywhere and usually a blanket because I can’t take being cold. I deal with Irritable bowel. Been blessed with medication to help with that too. There is so much to deal with when you have scleroderma. It’s exhausting! I have a great husband who is my biggest support. Most of my family choose to ignore that I am sick and aren’t willing to help. Sometimes I feel very alone. It’s hard when your day is consumed with Scleroderma. What I eat, trying to relax and not stress, exercise, taking all my medications at the right time, what medication can’t be taken at the same time as other medications, take this one a hour before you or two hours after you. The list goes on and on and so am I. So know that I am praying for all of us that are dealing with scleroderma.
Amy Gietzen
Way to go Joy! you are kicking butt and taking names. So happy to hear you are doing well and living life on your terms.