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Sunday, February 18, 2018

83 Days and Counting!

I can't believe how quickly this semester is going by so far! It feels like I just got back on campus a few days ago, but we are already approaching the middle of the semester, which means... 83 days till graduation! It is starting to become more real, but it still is crazy to think that I have been in college for four years, and that I'm almost done. It is also very bittersweet-- I am "ready" to be done with college, but it is also hard to look back on the last four years and see everything that has happened. Although I am a hell of a lot more confident in my self and my abilities, it is also sad to think that I wasn't "sick" four years ago, and how dramatically my life has changed as a result of that.
Pitzer Class of 2018! (I'm on the right, second row from the bottom, photo credits to PZ)
IVIG is still a godsend-- with the exception of one ER trip back in mid January rom the needle going into my port cracking which caused a reaction because my continuous infusion was stopped for those couple of hours, and one other incident, I have not needed to use the EpiPen, and my steroid dose is the lowest it has been in years. The moon face is finally going away! I actually feel like a normal, functional human being-- sure, I don't have much stamina, and I still have a lot of symptoms, but I'm functional, and respond to treatment when I need it, which wasn't the case before. The IVIG days in itself still sucks. The past few times, I have gotten really severe migraines, body aches, dizziness, some nausea, and a low grade fever with my infusions, but I also know that I will feel better 3-4 days later. I can also tell when it is starting to wear off, as I get more fatigued, and I know that I am "due." My next round of IVIG is at the beginning of March.

This month, February, is also rare disease awareness month! I have included some infographics made from the Mastocytosis Society below. Not only are they fun and colorful,  but I think they provide some quick insight into the basics of mast cell disease, and how there is so much variation even amongst individuals with the same diagnosis in terms of triggers, tolerances, response to treatment, etc. I am working on planning an event at school for the first week of March to close of Rare Disease Awareness month, so stay tuned!

A reminder/PSA-- IVIG, which I get once a month, is made from blood donations. So if you can, please please donate blood! Not only is it important in the wake of recent tragedies across the country (and globally), but there is also a need for it day to day for a variety of diagnoses and treatments.

This weekend I have been working on a bunch of readings and essays to get ahead for this upcoming week. My core group of grad school apps are submitted, and now I just apply to jobs, and wait to hear back. I head back to San Diego on Friday for my cardiology follow up. My most recent labs were a little wonky, so we're making sure that I am still getting enough nutrition. I also am really excited because we are doing a get together for other young adults with POTS, MCAS, and other related conditions this weekend in San Diego, which I think is going to be a lot of fun! I have made a lot of really great friends online who "get it," so getting to see everyone in person in special. I am actually doing research for one of my courses this semester with one of those friends, which should be cool as well (but if I talked about it, then it would eliminate you from the potential participant pool :P).

So, long story short, things are pretty status quo, which is a very good thing (and a nice change)! I'll post updates as I figure out more of my new adventures over the next few months.