susanashephard (@susanashephard) published a blog post · August 26th, 2011
Living With Myelofibrosis (Part 3 of a 4 part-series)
Thanks for sticking with me! In this entry, I’ll be talking about what is involved in being your own advocate. I believe that for myself, I would not be alive to write to you now had I not realized that I am in charge – not the professionals whose help I seek.
Initially, I looked for information at my local library. Everything I found on the subject was brief and grim. Eventually, I found a small online support group. We were all in the same boat: we didn’t have knowledge of our disease, how to treat it, or who could help us. In comparing our situations we began to pull together some of the answers. As the support group grew, we even developed an internal list of the doctors we trusted.
The group, MPD-NET, has now grown to several thousand members and its archives go back to its beginnings in the mid-1990s. Its founder, Joyce Niblack, has since passed on but her legacy continues through the group’s current leadership and through bi-annual conferences. As for me, had I not reached out to fellow patients through this I would not have learned the things that would later keep me alive. On occasion, it was difficult to read the sad stories. However, it was essential for learning of new developments that could affect my quality of life, or very life itself. Also, it helped me when I could share my own experiences with others.
Over the years since my diagnosis, I continued to research medical journal articles for the latest studies and treatment approaches. I used these with doctor visits, and changed doctors whenever I felt I could receive more competent care elsewhere. Not living near any of our experts, I flew annually for a consult and bone marrow biopsy. I then asked a local hematologist to implement the treatment plan prescribed by that expert, and to regularly monitor my status. If my local hematologist was uncomfortable with this, I sought another.
I am now fortunate to have one of the foremost experts on Myelofibrosis as my local hematologist, Dr Ruben Mesa of Mayo Clinic in Arizona. Under his care, I’ve switched my treatment from regular Interferon to Pegasys, a time release version of Interferon, and the side effects from medication have been reduced for me.
Regarding the issue of chronic fatigue: I have learned that there are no pills and no pep talks that will solve this. Only exercise does!
In my case after years of MF, I needed 12 weeks of physical therapy to get me into good enough shape to even attempt a 10 minute daily walk. Now I depend upon regular exercise to free me. Until you can achieve this, you will have to pace yourself. For me, pacing meant having only one activity per day, interspersed with several days of total rest.
For me, it has also helped to simplify my diet. I’m not alone in finding health benefits in keeping processed foods, grains, sugar and dairy at a minimum. I look for organic sources where possible. Who wants to add toxins to a body which already has enough to deal with? And who wants to invite further health problems such as diabetes, obesity, high blood pressure or high cholesterol? Not only am I avoiding these complications, but improving my ability to cope with myelofibrosis.
To read "Living with Myelofibrosis", Part 1 and 2: