Discussing the OPEN ACT with Congressman Bilirakis
I am so excited to share with everyone my trip to DC for Rare Disease Week. It was a wonderful opportunity to meet with other rare advocates as well as healthcare industry leaders and political figures to discuss important legislation. Personally, it was a life changing experience where I finally felt that everything I have gone through in the last 313 days can have a positive outcome. While my situation is unique and I have a rare disease, my decisions can be used to trigger the changes necessary to allow all rare patients a chance at a better life.
Check out my guest feature on Everyday Health. I discuss what led to my decision to use Rituxan to treat Immune Thrombocytopenia.
President Obama announced the Precision Medicine Initiative to a room full of doctors and representatives from the healthcare industry. While this is an exciting time for patients dealing with various forms of cancer and other conditions, noticeably absent from the plan was the rare disease community. In fact, I have yet to really encounter anything from the PMI that focuses on researching rare diseases despite all the rhetoric with understanding genetics and how medicine can taylor treatments to suit an individual.
If you told me in May 2014 that I would complete a 5k nine months later, I would be shocked. In fact, I would probably think you were crazy. I thought that because I was diagnosed with immune thrombocytopenia, my life was over. There was no hope, only an endless battle with needles and platelet counts. Today I proved myself wrong, and it felt so good! Continue reading
I imagine many of you can relate to this e-card. I never really understood insomnia until I became sick. I was always very fortunate to enjoy a great sleep pattern. Sure, one night every few months I might not sleep well, but it was rare. Now I face a nightly struggle to get 8 hours of shut-eye. Continue reading
Let’s be honest, we have all heard people say things that make us want to punch a wall. I can recall a few situations in particular where I am not exactly sure how I kept my cool. Especially during the times I was experiencing roid rage. But how do you respond in these situations? I look at them as a chance to educate the ignorant. Continue reading
The number on the scale predicts my mood each morning. The less I weigh, the happier I am. If that number goes up, I generally start my day off disappointed. I’m fighting every hour, every meal, to get rid of the weight prednisone gave me. Since it situated in my midsection, I feel 1000 times larger than I am. A nice daily reminder of how much I hate steroids! Continue reading
When I was diagnosed last May with ITP, I had no idea I was about to be tossed out of my job by my employer. When I was hospitalized, I wrongly assumed that the company I worked so hard for would back me up. So when I was laid off, I felt like my world was crumbling around me. How would I pay my bills? What about my health insurance? Could I qualify for disability? There were few real answers for me. Continue reading
I officially gained a whopping 25lbs after all my treatments from May through December. For many people, this may seem minor, for others it is shocking. I am surprised at how my body reacted to repeated increases in prednisone. The weight was not evenly distributed. It ended up sitting around my stomach, love handles, butt and thighs. For a size comparison, I went into the hospital a 4. I am now stretching a size 10! Weight issues seem to go on the back burner for rare and autoimmune disease patients, but I want to bring attention to it. Continue reading
