Attempting to Keep Up the Forward Momentum

Hello again! I hope you all have had a fantastic week so far, we're more than halfway there! I apologize for not posting an update since my San Diego trip. I had two friends visit me on their Spring Break, and got the opportunity to grab lunch with another friend, which was awesome! I loved getting to see and spend time with everybody.

Last Wednesday, I went to my doctor's office to receive a routine vaccination, the TDAP (Tetanus, Diphtheria, Pertussis) vaccine. I anticipated that I would be a little sore afterwards, since the vaccine is notorious for causing that, but I was not anticipating that I would have an anaphylactic reaction to it. Luckily, I was in the right place at the right time, and my doctor was right up the hallway. It was my first time using an EpiPen (injectable Epinephrine/Adrenaline that is used in severe allergic reactions) in a while, and it resolved the symptoms enough that I could go home.

I hoped that using the EpiPen would be the end of that fun, but unfortunately, my immune system wasn't too fond of the idea to calm down. I am not going to lie, this past weekend was pretty miserable-- I went through another 2 doses of epinephrine, and a bottle of liquid Benadryl. I used the new Auvi-Q for the first time, which was SO much less painful than the traditional EpiPen (thanks Kaleo for covering out of pocket expenses for commercial patients). There were many close calls of debating whether to go to the Emergency Room or stay home. Most people are instructed to go to the emergency room after just one dose of epinephrine is administered. However, because I know my body and the way it tolerates the drug well, I am allowed to "wait it out" at home after one dose. In all honesty, I probably should have gone to the emergency room, but I am glad that I was able to wait it out at home. We are trying really hard to ween me off of Prednisone, which is a steroid that I discussed in my post last week, because of all of the negative side effects and potential long term consequences. Going to the ER would have made that difficult, if not impossible.

I got my Xolair dose on Monday, which helped things calm down significantly. I am still pretty reactive, but nothing that isn't responding substantially to Benadryl. Again, thank goodness for antihistamines, Xolair and Gleevec. It is easy to see that I am reactive now and was to the TDAP, and start to think that the Gleevec isn't working, but I know that there is absolutely no way that I would have been able to stay out of the ICU this past weekend had I not been on the Gleevec. It still seems to be making a positive difference, and my Potassium and RBC finally seem to be settling down as well.

With my new "Care About Rare" Mast Cell Disorder awareness shirt.

For those of you interested in learning more about Mast Cell Activation Syndrome (MCAS), my primary diagnosis, this video (click me) is an amazing video put together by BBC, who features another person with the same diagnoses as me, Brynn. She is on a CDI, or continuous diphenhydramine (Benadryl drip), through her port. I have a port as well, but luckily we have been able to avoid having to do a CDI since the Gleevec has been helping me. It is an intense video, but informative and important to share.

Also on Monday, I started physical therapy on my ankle and for my POTS. We are going to work on learning ways to exercise without triggering POTS or my mast cells, positions that are beneficial to POTS, etc. I am looking forward to continuing my work there. Also, sometime in the next couple of weeks, my Beads of Courage should be coming! I will post more about that when they come, but they essentially allow me to document my experiences through a tangible method, where I get a bead for each triumph I encounter (needle poke, anaphylactic episode, etc). Thank you so much to my grandparents for their donation to BOC so I could get off the waitlist before I age out of the program.

Lastly, another reminder to sign up for the Superhero Showdown Virtual 5K! To join my team, click the "join" button next to my team name, Arielle's Mast Cell Milieu. You do NOT have to walk an actual 5K, nor be physically present at any race! All you have to do is walk for 30 minutes or a 5K, and send the race organizers documentation to get your medal and T-shirt. If enough people sign up, I may organize an informal walk in the park so we can do it all together. This raises money for Super T's Mast Cell Destruction Foundation, which helps people like me who are experiencing financial difficulties as a result of complications from Mast Cell Disease.

I am confident that over the next couple of days, my body will continue to calm down and get back to more of a baseline. It's frustrating to have these hiccups, but I have to keep reminding myself that it is still an improvement, and take things one day at a time. I hope you all have a fantastic week!