Tag Archives: autoimmune disease
Undiagnosed, What Do I Do?
I can’t believe the amount of pain I have been in recently. It travels around my body from my knees to my shoulders and back to my ankles. I knew something was wrong so I went to see my doctors and explained my symptoms. The pain on a scale from 1-10 is about 6.5 to 7 so I needed to be proactive.
The Fear of Remission Ending
When I was finally done with my Rituxan treatments and my doctor declared it a success, I was so relieved. Finally I felt like I had some control over ITP. Then I inquired about how long my remission would last. I was warned that after about 9 months, my body will start to produce new working cells that Rituxan had disabled. I referenced my calendar and saw that it would be close to my 29th birthday. Now every day I wake up, I think about this upcoming date.
Fitness Tracker Data, Support for Rare & Autoimmune Diseases
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
Treatment and Weight Gain: The Saga
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
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
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
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!