Decisions Decisions....

I can't believe how quickly the end of my last semester of my undergraduate career is approaching! I also have lots of good news along with it. I am excited to announce that I will be working at Children's Hospital Los Angeles starting at the end of April part time as a Peer Health Coach, where I was a former patient! It is really cool to be able to go back NOT as a patient, to be able to help other patients and make a difference.

I also have heard back from half of the graduate programs I have applied to-- and I got into both! I'll keep the universities I have heard from nameless for now, but I'll give you a hint. They are two major universities in Southern California with a long standing rivalry. I am still waiting to hear back from the last two before I make my final decision, but I think I have my decision made. The two programs that I did hear back from are the most competitive out of the bunch, so it is very encouraging that I got into them both. I am glad that I will be able to stay semi close to home, and I can't believe the progress that I have made from almost a year ago, where I spent most of my time in bed or in the hospital, too sick to do much.

Health wise, things have been going really well. The rest of this post may not seem like it, but I promise, I am really feeling a LOT better. I had another three appointments in San Diego, one about 2 weeks ago, and two at the end of last week. I met with my POTS doctor, a gastroenterologist, and my allergist/immunologist. All of them told me how I look like a different person from a few weeks ago. In my last post, I also mentioned there were some difficulties with my GI system and nutrition. It's still been pretty finicky, but I met with a new GI, who started me on a new medication this week. So far, it seems to be helping, so fingers crossed!

"Moon face" is almost gone!

The IVIG has still been very helpful. As I said to my doctor, "I feel like a new person." I have been having some trouble with having reactions to the infusions themselves, and their side effects, so we are working on trying to get the brand switched. Yes, the brand-- although IVIG is a human blood product, there are multiple "brands," which have different filtration and constitution methods (go donate blood people!). I believe I mentioned it in a previous post, but my body does not make igA, which is the antibodies that line mucosal tracts throughout the body, which contributes to my not-so-fantastic immune system. I have been on a low igA brand, but since I have been having a hard time with it, we are going to try to get my insurance to approve a no-igA formulation, and also add in a small dose of IV steroids before the infusion. Regardless, the IVIG has helped enough so although I have had more reactions and episodes, I still have not been hospitalized, and I am WAY down on my steroid dose. No more moon face! We still have a few more milligrams to go, but we're close. It seems to be relatively agreed upon that I won't ever be able to get completely off steroids, but if we can keep them at a super low dose, that is really great.

Steroids have icky side effects in addition to the "moon face," which is why we have been trying so hard to get me off of them. I had a DEXA (bone density) scan over Spring Break, which did show that I have developed osteoporosis in my spine. Luckily, my hips look good for now, but it is something that will be monitored. I'll be meeting with my endocrinologist again in a little over a week to decide if we want to try any medication for it. I have been having some trouble with dizziness, and "greying out," but only if I am standing up (if I am sitting, it's not an issue). Unfortunately, this is very common with POTS, and luckily, doesn't affect any activities that don't require standing. However, in conjunction with the osteoporosis diagnosis, and preparing for my job/grad school, I am using a wheelchair part time to help increase my stamina in terms of being able to be out and about for longer, and actually allow me to do the strength and physical therapy work. Being able to use it just on bad days or for an hour here and there allows me to save my energy for when I really need it, and to be able to do more than I would if I had to sit down every few minutes. I bought a used chair to use temporarily, but I have evaluations this week for a chair that actually fits me, and is super lightweight to make it easier to get around. We tried taking me off one of my POTS medications, to see if it was making my blood pressure go too low, which totally backfired-- so for now, we're keeping things the same there. I'm not going to lie, I have been very hesitant to proceed with the wheelchair, because of how people respond/react to it, and associated stigma. However, being able to use it when I need it has showed me that it's worth it to prevent any complications, and that those who truly matter see through it.

My trips to San Diego have also been fun because I have gotten to spend time with so many amazing people that I have met online who have similar health situations to me. Although we may have met from having the same or similar diagnoses, we all have so much in common beyond that, and I truly appreciate their friendship and support (and letting me crash with them when I'm in town).

Just a part of the San Diego "crew"!

Checking out the Abilities Expo!

Another fun part of Spring Break was that I drove up to the Bay Area for a last minute trip to surprise my mom, see my old neighbors, and a quick lunch with my grandparents. I caught surprising my mom on video:

Also incredibly thankful to my old neighbors for helping me make that happen! I miss them dearly and love any opportunity to spend time with them. And, being able to see my other cousins when I got back to Claremont was an awesome surprise too:


Once I finalize my grad school decision, I will post it here as well :) I am looking forward to my next set of adventures!

A group of us with POTS at the Claremont Colleges meet for lunch once a week. We Skype in whoever can't come in person, and today's set up was pretty comical :P