Welcome to My Personal Page
Welcome to this year’s Virtual Pump It Up For Platelets Fundraiser!
Unfortunately, we won’t be getting together in person again this year, but we’re still determined to do our best to continue spreading awareness about ITP. I greatly appreciate all of your love and support throughout my journey since I was diagnosed in 2006*.
*I had been feeling exhausted for months, and knew it had to be more than just being a mom to my four busy children. I had always been very healthy, so I was shocked to be diagnosed with SLE (lupus) and ITP, not just one, but two, autoimmune diseases. My days became filled with doctors appointments, labs, a bone marrow biopsy, treatments, infusion centers, and research. I've been hospitalized twice (with platelet counts under 10K), and have had many different treatments over the years...Rituxan, IVIg, Imuran, Cellcept, Dapsone, Prednisone, Myfortic.
As I reflect on my journey, I know it hasn’t been easy...the beginning was definitely a whirlwind of emotions and lifestyle adjustments. At the 10 year mark, I hit a low point...I was tired of dealing with my diseases. But, after I got over the “why me?!” moment again, I decided it was time to make changes. I worked with my hematologist/oncologist and rheumatologist to taper off all ITP and Lupus medications to see how my body would react with no treatments. Having tried so many different treatments, some concurrently, I really didn’t know what was working. I longed to be drug-free! This journey has been difficult, stressful, and tiring, but also, interesting, inspiring and amazing. I know that my journey is not over, and I remain hopeful.
2021 update: I am still on Myfortic, an immunosuppressant drug. In the past year, my platelet count has had its ups and downs, dropping down to 18K a few weeks ago, but, for the most part, has remained pretty stable around 50K (normal 150,000-450,000). I’m still extremely careful when I go out, but I’m hoping to get back to more traveling and foodie adventures again soon!
Discovering PDSA, and attending my first conference in Las Vegas in 2010, had such an impact on me. My husband, family, and friends were all so supportive, but here, I finally felt that I wasn't alone dealing with ITP. It was an incredible experience to be surrounded by others who understood, and were personally experiencing similar issues. I am so grateful to the amazing PDSA staff and medical advisors for their wealth of knowledge and involvement in this organization. PDSA held their second virtual conference last month. They did an amazing job delivering new information and updates from the medical advisors. Hopefully, we’ll be able to attend in person next year!
Thank you to PDSA for raising awareness and supporting people with ITP. I am so fortunate to have met so many strong, amazing people, and to be part of our local PSDA networking group in Orange County.
I hope you can support me by donating to my Virtual Pump It Up for Platelets birthday fundraiser, and help us to continue spreading the word on ITP awareness and PDSA! We can all make a difference!
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