It is no secret that since I became sick and was stuck on prednisone for months that I began to hate my body. After all, I’m up about 30 pounds from where I was nearly two years ago and I lost a lot of muscle that I had worked so hard to gain. I never acknowledged to myself how much I hate my body until I was out for a walk tonight. My hatred isn’t just for the weight gain or loss of muscle. It comes from a feeling of betrayal: my body tried to kill me. My immune system malfunctioned and for some miraculous reason, I survived months of physically challenging work in heels without internally bleeding to death.
Kona wanted to make a special holiday appearance in honor of our call to action for the Senate over the 21st Century Cures initiative. I sincerely hope that when I arrive in DC in a few weeks, progress will have been made. There is no time to waste when 30 million Americans depend on Congress to take action.
My blog is a road map of my rare disease journey, starting last year when I decided to take a chance and use Rituxan off label. It is not approved for ITP patients. Why? Because we don’t have enough information and research on ITP to conduct a comprehensive clinical trial. One of my goals for 2016 is to change that. Through my research, I have been able to isolate a population of ITP patients who can and will benefit from use of the drug. Simply put, this drug is a life saver and the people who achieve remission from it enjoy a few years of a fairly normal life. There is absolutely no reason why this should be denied to people like myself.
Tomorrow is December 18th, which happens to be the one year anniversary of my remission. I truly believe this gift was bestowed upon me to give me a chance to fight for others. I have lost a few friends in the past year to ITP, it doesn’t get any easier and it makes me realize just how fortunate I am.
I’ve spent the last 365 building my new normal, now it is time to change medicine.
I want to congratulate the following people on winning a signed copy of How To Heal A Bruise!
Thank you to everyone for posting your ITP Awareness Day photos! Remember that awareness and advocacy is important every day of the year.
A wonderful platelet pal, the owner of ITPandMe.com has published a book! I am so excited to be giving away three signed copies of the book.
Contest begins on Wednesday, September 23, 2015 at 11am EST.
Three (3) people will be selected to win a signed copy of How To Heal A Bruise by sharing a social media campaign message to raise awareness of ITP.
**Make sure you put Meg & I in the tweets so I can see them!**
Also, I will accept bonus submissions if you tweet using #ITPAware and link to How To Heal A Bruise on Amazon!
Take a photo holding a sign discussing life with ITP, the 21st Century Cures Initiative or how much you hate Prednisone and you will receive TWO (2) bonus entries!
Note: you’re giving me consent to use your photo on social media to continue to raise awareness about ITP. Get creative and have fun! Make sure you tag me on Instagram and Twitter: @RareCandace
Winners will be announced Thursday, October 1st at 5pm EST (if I am late, forgive me as law school and my new autoimmune issues have been kicking my butt lately).
In the last few months as I slowly get to know professors and administrators in my school, I have noticed a trend. I wouldn’t say it is an academic thing, or law school related, rather it is just ignorance. When I express my motivation (or insanity) behind deciding to go to law school such a short time after being diagnosed with my rare disease, I’m met with a strange reaction. Everyone says the same thing except in different ways. It boils down to, be passionate but focus on your studies. Continue reading
With two weeks of law school completed, I am physically drained. It isn’t due to the work, I have worked longer and harder hours doing physical and mental labor that was nothing short of torture at times. The difference now is my health. I cannot sustain myself for extended periods of time because my body has to try and fight off germs from the hundreds of people I encounter at close proximity every day. I almost exploded this week because people can’t respect personal space and therefore were making me worry that I might become sick. Up with a scratchy throat at 8am on a Saturday, I’m afraid that my concerns were justified. Continue reading
September is ITP awareness month, so it is only fitting to start off with a list of the things that I have come to discover about life with low platelets. It has been a challenging, difficult and frustrating journey. However, I would be lying if I said I wasn’t a better person because of it. Continue reading
Imagine having blood drawn via a finger prick, downloading an app to your phone and the results in your hand within 24-48 hours. On top of that, you knew exactly what you would pay for the blood tests you wanted and you didn’t need to get orders from your doctor. This isn’t an idea, it is reality for those lucky enough to live in Arizona thanks to a company called Theranos. Continue reading
It seems we spend more time in the waiting room than actually interacting with our doctors. That’s why as patients we must consolidate as much information as possible and leave out unnecessary details. Given the prevalence of health data trackers like Fitbit and Jawbone, it is critical that we focus on important symptoms and side effects. Continue reading
I’ve been rare for about 14 months now, enough time to start noticing things within the space that aren’t so fabulous. I’m pretty disgusted by the actions of a few people and organizations that are treating rare disease advocacy as some sort of popularity contest.
News flash: If you’re popular with fellow rare disease advocates, you’re doing it wrong!