Check out my guest feature on Everyday Health. I discuss what led to my decision to use Rituxan to treat Immune Thrombocytopenia.
Tag Archives: ITP
How Washington Can Change Rare Disease: Part Four
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.
From Fearing To Facing My Rare Disease
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
Becoming Your Own Detective
I document every blood draw with photos for comparison. Strange documentation, but I hope one day I can use the data to benefit other ITP patients.
The question rare disease patients ask all the time, WHY? I started reflecting over the holidays about everything I went through last year. 2014 was the final time I would ever define myself as ‘healthy’ until being diagnosed with ITP. 2015 will be my first full year being ‘sick’. While it may seem silly, these things really struck a cord with me. It boiled down to ‘why me’? Why did I get sick? Why did it happen at 27? Incidentally, I started to become a detective. I started researching genetics, immune disorders, rare diseases, etc. I was relieved to find out I’m not the only one!
What “Being Rare” Has Taught Me
Two weeks before diagnosis.
They say ignorance is bliss, and I would have to agree. In the weeks leading up to my hospitalization and being diagnosed with a rare disease, the last thing I thought about was anything health related. I was more focused on work and the daily stresses of life. Then when my world came crashing down, my focus was forced to shift. All of the sudden, I had to live day by day. I was no longer working for the weekend (be honest, you started singing that song in your head), the things that take up my time had to be carefully considered. These last 7 1/2 months have given me some interesting lessons. Continue reading
Rare Disease & Relationships: Challenges
There are a lot of topics that aren’t covered when it comes to rare diseases. One of which is relationships. Exactly what happens when one person becomes sick? Is the relationship complicated based on time spent together? Martial status? Which person gets sick? There are so many dynamics, it is impossible to discuss every possibility. I can only speak from experience on this. Bottom line, it is the most extreme challenge that any couple can face.
Diagnosed With A Rare Disease, What Now?
Cinco De Mayo in the hospital, my mom won a gift basket!
I see this question all over the internet. I was just told I have a rare disease, what do I do? Who do I turn to? What medications should I take? Am I going to die? There is no step by step guide to how to handle these issues. We don’t even have a set course of treatment for most conditions, everyone is different! And yes, you can die. At some point every single one of us will. You just cannot live in the shadow of that fear because it will not help you excel in your day to day activities. Continue reading
Healing Power of Pets
Happy Holidays From Kona!
I have always loved animals, but the bond I’ve shared with my dog is extra special. Kona is sort of like a small child, she requires constant attention and loves to be right next to me no matter what I’m doing. When I got sick, all I wanted was to get out of the hospital and see her, so when the therapy dogs came around each day I was very excited! It made me realize just how great of an impact animals can make in the healing process. Continue reading
Rituxan Finale!
I am happy to report that I completed my final round of Rituxan yesterday. My platelets were at an impressive 193,000, a nice number considering I am continuing to drop off the prednisone. I should be off that completely by next Thursday. Then I will wait for my adrenal glands to start working again, after a nice 7 1/2 month vacation. In addition to that, there are further challenges ahead. Continue reading
Prednisone Gift Guide
If you’ve ever had to take Prednisone for any length of time, you will connect with what I’ve posted and tweeted about. The side effects are awful, there is really no way to avoid them and they linger long after you’ve taken your last pill. With the holidays just a few weeks away, I wanted to make a list of things that help me cope with it all. I high suggest everything I am about to show you, it has been tested by me with roid rage!