I am sharing my medical story in order to provide background for other posts where I share pointers from my own experiences. In late 2008, I began having a lot of health problems. Prior to that I had been healthy. I was active: hiking, biking, running, fishing, etc. I began having shortness of breath walking up even one flight of stairs. I was always exhausted no matter how much I slept. I had a lot of gastrointestinal issues. I spent 6-7 months seeing lots of doctors and undergoing numerous tests: x-rays, CT-scans, sleep study, broncoscopy, surgery of an open lung biopsy, blood tests, endoscopy, swallow study, gastric emptying study, colonoscopy, and MRI’s. No part of my body seemed to go untested. Finally, a couple of specialists: a Pulmonary specialist and Rheumatologist were able to order the right tests and put all of the pieces of a complicated puzzle together.
In the fall of 2009, I was diagnosed with Systemic Sceroderma with Interstitial Lung Disease. Scleroderma is a rare, chronic (never goes away) auto-immune disease. Basically, my immune system, which is supposed to fight off illness, went haywire and started attacking the other systems of my body instead. Systemic means that it is across multiple systems of my body. The disease caused scarring in my lungs (Pulmonary Fibrosis) in the areas where oxygen is supposed to pass through (Interstitial), resulting in lowered lung capacity and function. Because of the reduced oxygen from my lungs, my heart tries to compensate, resulting in an increased pulse (heart rate) which can be 100 beats per minute at rest and quickly jumps to 125 beats per minute with some activity.
Additionally, I have scar tissue at the bottom of my esophagus, where food enters my stomach. Normally there is a valve that allows food into your stomach, but not back up from your stomach. My valve area is stiff from scarring causing it to always be open, resulting in significant Reflux issues. I can never lay completely flat. My stomach/intestines were also damaged, in that it they do not move food along for digesting. It just sits there. This is called Gastroparesis. Between the disease and the many medications I take to combat symptoms, I also have ongoing problems with Constipation.
Scleroderma has also caused a condition called Raynaud’s. When my body thinks it’s cold (it doesn’t have to actually be cold), it significantly cuts off the blood flow to my fingers and toes, to the point that they turn purple/blue/white and go numb. This makes fine motor tasks challenging. I can also develop ulcers if they spend too much time with reduced blood flow. My bladder has some stiffening which results in always feeling like I have to urinate.
In addition to the above problems, I also struggle with insomnia and depression. While these are not directly caused by Sceroderma, they are likely caused by side effects of medication and the stress of dealing with all of the health issues’ daily impact on life.
There is no cure for Systemic Scleroderma. Since my diagnosis, I have taken medication to suppress my immune system. I took Cytoxan (a chemotherapy drug used to fight cancer) for the first two years and have taken Cellcept (a drug used to prevent rejection of transplanted organs) for the rest of the time. Both of these drugs require ongoing bloodwork and monitoring. These drugs have slowed the progression of the disease. Taking immunosupressants also has increased my susceptibility to getting sick from other people and things in the environment, meaning infections!
After 7 years of living with all of these health challenges, I have figured out systems to take all of my medications, keep my gastrointestinal system moving, get sleep, eat, see my doctors and even just get out of bed each day (which is still sometimes a problem as anyone with depression knows). And when we are living in our RV, I have adapted to accomplish these things while living in an RV.
Under the category, “Travel & Medical” I will be posting my strategies and systems for dealing with particular health/medical issues that can be used by anyone with chronic health issues.
