Part two of my series on how Washington can improve the lives of rare disease patients is discussing the Affordable Care Act, aka Obamacare. There has been a lot of controversy surrounding the legislation. While some good things have come out of it, there are numerous revisions that need to be made in order for it to truly help rare patients and their families.
This is the first of a four part series leading up to my trip to Washington DC for Rare Disease Week. I want to highlight some issues in the rare disease community with regards to STEM education in the United States and how it can impact our lives. It is obvious to say that scientists, engineers, mathematicians and technology experts are important for our country. However, they are vital to the rare disease community, and we need to encourage people to explore STEM related occupations. Continue reading
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!
Besides a lack of information for rare disease patients, caregivers of those Rare Warriors have even less guidence. I remember leaving the hospital, no one gave any advice to my parents on what to do with me. You know what that created? A giant, nasty monster! All of the sudden my life was controlled down to the minute, I became “bubble girl” and their fear got the best of them. That awful experience inspired this post. As someone with a rare disease, I want to tell you that there are things you CANNOT control. It takes time to accept that, and when you do everyone will benefit. Continue reading
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
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.
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
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
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
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!