I changed up the formatting a little for this post so you can skip/scroll down to what you are interested in (basically, more fun stuff at the top and bottom, health updates in the middle).
Finishing Finals
In my last post, I was finishing up finals-- I had two, and although they were both tough, I got one grade back, and I aced it! It's official, graduation date is May 12th! I am going to miss everyone in Claremont and at Pitzer, but I also feel like I'm ready to move on (Pitzer pals I promise you aren't chopped liver!). After my second final, I was so ready to go back home, and it was great to be able to be back in time for the first night of Hanukkah. My little brother, Cody, still had a few days of school left before break. My dad and step mom truly went above and beyond this year and got me some great stuff to make me more comfy in the new house. We went to an event in the shopping center located in our new development where they carved a menorah out of ice, which was pretty cool to see! We are certainly getting some smoke from the wildfires, but thankfully, we are far enough from the largest fire currently winding down (the Thomas Fire in SB/Northern Ventura County).
First Round of Outpatient IVIG/Two Patients in the House
A day later, I had my first outpatient round of IVIG (also discussed in last week's post). I anticipated that it would be rough, because the first round that I completed inpatient was rough and had the antibodies removed that I didn't have. This round was pretty tough, more so than the inpatient one. It was run over 2 days for 6 hours a day. It can't go through the port in my chest, because it is chemically incompatible with the Benadryl, so it has to go through a normal IV in my arms. Most of my veins are either scarred or don't cooperate from my EDS, so I went through 6-7 IV attempts, and 3 actual IVs over the course of the 3 days. Side effects were also brutal-- dizziness, nausea, fatigue, migraines, and overall pain/weakness. I was given premeds and fluids, which is standard for anybody undergoing IVIG, but it still was no fun. Luckily, the side effects subsided after a couple of days, and I tried to distract myself in the mean time with studying for the GRE. My stepmom and aunt also came sat with me for a few hours each day, also nice to break up the time.
Even though the IVIG itself sucked, it seems to be doing it's job-- I am now 4 and a half weeks epi free! This is my longest streak since the summer. Like I said in the last post, I'm still pretty symptomatic, but the fact that the symptoms haven't escalated is awesome. Although it is a little early to tell if it is a fluke or the IVIG starting to work, I'll take it either way. I will have to continue to do the IVIG every four weeks (the same 2 days, 6 hours a day), so my next round will be the second week of January.
That weekend was a little crazy due to family gatherings, me feeling crummy, and on top of that, my dad needed to have surgery on the second day of my IVIG, as he fell off a ladder while trying to land Hanukkah lights (he jokes that God was smiting him for being Jewish and still putting up Christmas/Hanukkah lights, but at least these lights are blue and white). Luckily, he didn't hit is head or do anything too awful, but he did tear his bicep off the bone and break his toe. That sounds SUPER painful, but we have all been really impressed that he has been a trooper throughout the whole experience. He is on the road to recovery and working on PT, but will take a while to fully recover.
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| Updated Beads of Courage |
The following Monday, I took the GRE-- although I am not sure if I will be going to grad school right away or attempting to enter the work force, one of the programs I am applying to required the GRE (of course, only one). I was pretty nervous to take it because I had been working through a practice book which was pretty tricky, but I was pleasantly surprised to see that I had done much better than I anticipated, which was also a moment of pride!
Follow Ups in San Diego/Current Game Plan
The next day, I went for follow ups in San Diego with the doctor who manages my mast cell care and a new doctor who specializes in POTS, the autonomic disorder I have that accompanies the Mast Cell. We discussed where I am at, and what the future game plan is-- the IVIG is supposed to take a little longer to work, so it is agreed that it could potentially be a fluke that things have been doing better, but nevertheless, forward progress is great, and if it is from the IVIG, I could continue to have more positive effects, since it can take up to a year to gain the full effects from it. The cardiologist/electrophysiologist agreed that the IVIG is a good idea-- although it is not a "traditional" treatment for mast cell, my situation has been far from "typical" or "traditional," and it has shown promise in other patients, and also is supported by the most recent research that shows that most cases of Mast Cell Activation and POTS are caused by some autoimmune source, although that exact cause remains unknown.. The way it was described to me was the idea of which is the chicken vs. the egg- the POTS causing mast cell symptoms or vice versa (explained really well in this webinar). I was told that the side effects from the IVIG are very standard, so if it continues to be really uncomfortable, the doctor may adjust the premedication regimen, or slow down the infusion. They also said that it does get easier over time, likely from a combination of the body habituating to it/getting better at and refining the premedication regimen.
With the IVIG, the plan is to try to continue to reduce, and (hopefully) discontinue steroids, which will ultimately depend on whether or not my body is able to produce cortisol on its own. This will take in itself at least 6 months to a year, assuming there are no major set backs, and if my body is still able to produce cortisol. I'm really hopeful that the IVIG will help. After that, the plan is to try to reduce some of the other medications that suppress my immune system, since they are risky medications in terms of long term effects, and because it becomes quite dangerous if I do get even a simple virus (so love me from a distance if you have cooties). From there, we work on the Benadryl pump, probably a year or two down the line. Although I want to get off all of this stuff sooner, my body has proven time and time again that it can't be rushed, or I will just end up right back where I started. So, the current plan is to try to very slowly reduce the steroids, and maintain status quo otherwise.
After a long afternoon of appointments, I met up with two other young women who see the same POTS specialist at a local restaurant/brewery. It was great to meet them both in person, and we had a lot of fun, even if it was only for an hour or so! I'm looking forward to seeing them again on my next trip. I am really grateful to have made some amazing friends-- although we all wish we were meeting/talking under different circumstances, it is amazing to have a support network who "gets it." (shoutout to MC who made me a new pump bag/her Etsy store, Molly for the "hot mess express" keychain, spoonie alliance group texts and the lovely notes/holiday cards from the Mast Cell Crew!).
Other Winter Break Fun
As you can see, I have been pretty busy since my Winter Break has started, but I should hopefully have some more down time over the next couple of weeks. Although hectic, there have been other positive/fun developments too! My lease was almost up on my car-- although I have been financing my lease since I got my first car at 16, this was the first time that I entirely financed/negotiated/arranged for the car, and I LOVE it (well like 80%)! I was a little worried about the color, but it looks perfect, and I love the way that it drives. It is also a little higher up, which makes it a lot easier to get in and out of, and also helps with these crazy LA drivers. I am continuing to submit grad school apps, and taking a peek at what job opportunities are out there. It is a little tricky because the opportunities that are listed now are different from what will be available when I graduate in May, but it at least gives me some ideas on where to look.
My mom drove all the way down from Northern California to spend a few days with me, which has been awesome, and today on Christmas Morning, we had some other Jewish friends over for bagels & lox and movies (we tried the Chinese food thing, but it was a 3 hour wait and they would no longer take any orders). I baked some cookies this evening to nosh on too (I probably overdid it today, but it kept me busy). We saw Cavalia, which is similar to Cirque de Soleil, with one of Cody's friend's family on Friday evening. I went with my new next door neighbor to see Pitch Perfect 3 as well (plot line was predictable, but the music was good).
My little brother is doing well, he wrote an amazing short story about me and is kicking butt academically! He also is enjoying the extra time off and reduced electronic restrictions over the break. I have another 3 weeks until the next semester begins, so I hope to come back to Northern California for a few days at some point over the break as well.
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| A part of the Jewish Christmas Gang |
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| My mom and I are big fans of Halo Top, a protein ice cream-- we checked out their new Scoop Shop in the mall, this was her concoction which looked amazing! |
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