National Rare Disease Day

Good afternoon everybody! I am sorry this update came a little later than usual, I figured I combine my weekly update with a post about National Rare Disease Day. The three main diagnoses I have, MCAS, POTS, and (suspected) EDS, are all considered rare diseases. MCAS is the most common of them all, and is still incredibly misunderstood, with only 3-4 doctors in the world who are considered to be "experts" in the disease. Therefore, National Rare Disease Day means a lot to me-- care about rare!

I have included a few resources in this week's blog post in honor of National Rare Disease Day. One is an infographic about the lack of funding and awareness of rare diseases. The next one is a photo collage which just shows a glimpse of my life with a trio of rare diseases. The last link is a video, made by another Mast Cell Warrior, Taylor, which me and a few friends are in. Please take a look at these resources and share on social media!

Now, for this week's update! Things are still going really well on the Gleevec. I am not reacting to the medication anymore, and I have been functioning! I was able to get out of town for the weekend, which was absolutely incredible. I haven't been able to go on vacation since August, so it was a welcome break and change in pace. It is affecting my potassium and my red blood cell count, so I am making sure I am getting my blood counts monitored every two weeks, and adding in some additional supplements.

At Monterey Bay Aquarium, one of my favorite places!

In addition, I had my appointment last week at the Dysautonomia Clinic at Stanford. The first hour and a half was autonomic testing, which was not a pleasant experience. The testing showed, that even with skipping only one dose of my medication, I have POTS, which is no surprise. Luckily, the testing only showed mild elevations, so it wasn't too torturous for me. This means that the medication I am taking for my POTS is working! More good news from that-- I am going to try to switch from IV Hydration three times a week to oral hydration, 2-4 L a day, plus a high salt diet and salt tablets. It will require a little extra effort on my part, but will allow me an extra 4+ hours a week of free time. This will be helpful, given that I am going to be increasing the amount of online courses beginning Mid-March.

Lastly, I got some questions about the photo above because of the lovely boot on my left foot. Well, thanks to the lovely suspected EDS, I sprained my ankle at the grocery store just walking. I got it checked out today, and got upgraded to a fancy air cast. Ironically on Rare Disease Day! I will be stuck in it for about 4 weeks, then a brace and physical therapy. A small cost to pay, I am still just overjoyed with the fact I am having some relief of my mast cell symptoms.

Nothing else too exciting in this upcoming week, I have my follow up with the Mast Cell Specialist in San Diego March 10th. Have a great week everybody, and Happy National Rare Disease Day! Care about rare, and spread the word!