A Sweet End to 2017!

As I was trying to come up with a clever title for this post (which as you can see, did NOT end up happening), I was thinking about the different happenings of the past couple of weeks, and honestly, I am thrilled to report that things have been going really well! Lots of positive things to report, academically, interpersonally, and health wise.
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.

Updated Beads of Courage

The GRE!
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.

A part of the Jewish Christmas Gang 

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! 

Finals Season, 3 Weeks Epi Free & IVIG Update

I can't believe it is already the end of the semester! These past couple of weeks really flew by. But, I am happy to report that I am officially done with classes for my second to last semester of college! I have 2 finals-- one on Monday, one on Tuesday, then I'm done! All of my other final papers and assignments are turned in, with the exception of one that just needs to be fine tuned. I have also been doing my online tutoring when I am able to as well. To be totally honest, I am still pleasantly surprised with how things have worked out academically this semester (but granted, I did put a LOT of effort in too).

I have been having to "hide" at school a lot this week. We are about 30 miles away from the closest fire, but the air quality is awful. Also, everyone seems to be sick, which is really not an option for me. I don't see or smell smoke at school, but I tried to go without wearing my mask, and boy, did I feel it. Yesterday (Friday) and today (Saturday), I tried to go without the mast on my limited excursions outside, but still was having some trouble. My parents' house has been more affected, as they are pretty close to multiple fires, but luckily, far enough away that nothing was at risk. And I'm sure my brother enjoyed the time off school.

My school is on the semester system, so I will have a month off-- a nice break. Nothing too exciting is planned, but I would like to try to make a trip back up to Northern California at some point during the break.

I double checked my calendar, ant it has been three weeks since I last had to use an EpiPen! That may  not sound like a lot, considering most EpiPen users don't have to use them (or have to rarely), but for me, that is the most time I have gone without having to use it in the last 5-6 months or so. That isn't to say that things haven't been rough physically, and I still have reaction symptoms daily, but the fact that it hasn't escalated to that point is great.

Now, for figuring out why my reactions have not escalated, so I can keep the trend going for as long as possible---- could be a fluke, or could potentially be the IVIG that I received at Children's. I thought I remember my doctor saying that the IVIG would take a few treatments to see if it is working, so I don't know if it is even possible that it is the reason why I haven't had to use the EpiPen. But in the mean time, I'll take it and not question what the source may be.

As I discussed in my last post, getting insurance coverage for IVIG, particularly when it is not being used in a "traditional" way, can be a challenge. This is especially true for me, as I have a separate immunodeficiency which can increase the risk of anaphylaxis to blood products (more info about it here). My body doesn't produce the antibody igA. Since IVIG is a blood product, it contains igA. The type that I received in the hospital either had low or no igA to minimize the likelihood of reaction. My insurance approved IVIG, but not the lower/no igA version-- I have to try the other version first.

To minimize the likelihood of a reaction, they are going to run it very slowly over the course of two days, for 6 hours each day, at an infusion center closer to my parent's house. I will also be given some additional medications before and during the treatment. It was not a particularly pleasant experience last time, even with the low/no igA version, so I am not looking forward to it, but I know that it will help in the long run. I have been told that it is pretty typical for IVIG to be somewhat uncomfortable. And, I always remind myself that it could be a LOT worse. I plan to distract myself by cramming for the GRE, which I am taking the following Monday, and maybe catching up a little bit on my favorite fall TV shows. And maybe binge watching some new shows too :)

I have started submitting grad school apps, which also feels so weird! I still don't know if I want to go right away, or work for a bit first, but I want to keep my options open. I'll start looking for job opportunities in the early Spring as well. Now I should probably stop procrastinating and get back to studying....

The (Metaphorical) Roller Coaster Ride & IVIG

Good afternoon everyone! I'm sorry that it has been quite a while since my last post, things have been busy! Since being discharged a few weeks ago from CHLA, I was working really hard to get things back on track physically, and to regain my strength and stamina. Any time that I am hospitalized, it is a major setback. I have to "start everything over" to a certain extent.

One of the hardest aspects of recovery after a hospitalization for me is weening off of steroids. The steroids make me feel ok and able to function physically, but long term, the effects of toxicity are not pretty. This is why I have been working so hard with my team to find other "steroid sparing" medications-- this is things like the immunosuppressant (CellCept), oral chemotherapy (Gleevec, which I am non longer on), antihistamines including the IV Benadryl pump, etc. Since starting the CellCept, I generally have been doing better, and after the hospitalization about a month ago, I was able to reduce the steroid dose faster than I am typically able to do. Regardless, each time the steroid dose is dramatically increased while in the hospital, it is rough to decrease the dose-- I get swelling, nausea, fatigue, episodes of anaphylaxis, wheezing, etc. It also makes my face swell with chipmunk cheeks, which I am really self conscious of. They are a mixed bag to say the least.

On the "Calm Down" Mom Panel

Last weekend, I went with Molly, the friend who was at CHLA with me, to the FARE (Food Allergy Research & Education) Teen Summit in Newport Beach. Although we felt like we were a little old for some of the programming and a little out of place, it was great to network, get off campus, and take some excursions in Orange County. We went to Downtown Disney (which was NOT a pleasant experience-- we were told that 'people with disabilities stand in line all day'), got to find fun food allergy safe foods at Whole Foods, found some safe chocolate at a local candy shop (putting some links at the bottom for anybody interested in our favorite finds!).

Sunday afternoon *before* things started not going super fantastic. For individuals with POTS like Molly and I, we are supposed to eat a high salt diet, hence the double shaker action.

I think both of us may have slightly overestimated our stamina going into the weekend-- by Sunday, we both felt pretty awful. All day Sunday, I was feeling "off" from my latest steroid reduction. I tried everything I could to avoid the hospital-- breathing treatments, running extra IV fluids, taking extra medication when appropriate, etc. By the evening, I started running out of options-- I had already exhausted all of my at home treatments, and still was showing signs of minimal improvement. I called the clinic, and was told that because it was impacting my airway, I needed to go in immediately.

Molly was also not doing well as the result of complications from their POTS and Ehler-Danlos and associated complications, and my team was reluctant to send me to the hospital closest to school because of how poorly they had treated my case in the past. After speaking with both Molly and myself, and because Molly is trained in using EpiPens, we ultimately decided that it would actually be safer to go back to CHLA, to ensure that they would be equipped to handle my care. Molly was going to need to return there in the morning anyways, so the doctor asked us to go out to CHLA ASAP, and that they would call ahead to be anticipating my case. Although this may sound unusual, given the situation, I was better off getting to a place that was equipped to handle my care.

We loaded into an Uber right away with 9 EpiPens-- we felt horrible for that Uber driver! Luckily we only had to use 2, but it was quite a relief when we actually made it to the hospital. In the ER there, the team also tried everything to be able to send me home, but ultimately, it was back to the PICU. They restarted the epinephrine drip and cranked the steroids back up. Molly was also readmitted, but to a general medical/surgical floor. It was weird both being back there again, but I think that it helped both of us stay positive/optimistic to have each other there, particularly for the experiences that were painful both literally and figuratively. Given how crazy it was that we were trying to make it to CHLA, we have officially (jokingly) named ourselves the "hot mess express" (which Molly modified a graphic novel to document).

The "hot mess express" book

Throughout this week, I have been kind of MIA on social media/blogging just because, as I am sure you can imagine, this is very frustrating. Even when I try all of the right things/try to be proactive, it is not always enough. In order to help channel my energy/focus, I have been working really hard all week on Graduate School Applications and school work. I am still not 100% sure what I want to do after graduation, but I figure that I should at least apply to some different opportunities and programs to keep my options open. I am caught up, but I want to make sure that it stays that way. I think Thanksgiving will also be a good break to make sure that I can get even further ahead. I am all registered for my final semester of college!

I was on the epinephrine drip until Wednesday, so a total of about 3 days. On Tuesday night, the team at CHLA decided to give IVIG a try (part of the reason why it was important to go to a specialty hospital, to be able to try new treatments). IVIG, or intravenous immunoglobulin, is a blood based product made from blood donors, that is a concentrated version of antibodies (this link describes a little more about it). It is typically used for autoimmune disorders or immunodeficiencies. I have an immunodeficiency, but it is not one that IVIG is typically used for. We also suspect that my mast cell may be caused by something autoimmune, but there has not been any confirmation of that yet. While I was inpatient, they decided to give it a shot. Because of my immunodeficiency, I have to receive a special, more highly purified version of IVIG. Since it is a blood product, it is certainly not the most comfortable procedure--- they gave me some premedication ahead of time, like Tylenol, Extra Benadryl, and steroids, but I still had some discomfort. It ran for a little bit over 6 hours.  I am appreciative of the CHLA team for taking me on, even though I technically am a little old for the place, until I get a more solid team established closer to my parents house. There were some rough moments this week, and their staff was extremely supportive, and willing to work with my primary mast cell doctor (who also has gone above and beyond).

It will take a few IVIG treatments to determine if it will have a positive effect, but my mast cell doctor collaborated with the CHLA team, and was really happy that they got this started. The fact that I didn't have a negative reaction is at least encouraging that it did not make anything worse. The next hurdle is insurance-- because this is somewhat of an "off-label use," and because IVIG is so expensive, I may not be able to get it covered. We are trying to get it covered for a treatment every few weeks. Each dose of IVIG requires pulling components of donating blood from a few thousand donors, so if you can donate blood, do it!! It is not any sort of directed donation, especially since it is processed significantly to make the IVIG itself, but having a healthy supply of donor blood helps make the treatment more accessible.

On Thursday night, the primary team that was caring for Molly (GI), ultimately decided that it was best for Molly to head back home to DC and be admitted to the Children's Hospital there first thing Friday morning upon landing. Molly is planning on returning in the Spring for the next semester. Of course, I am bummed that Molly had to head back, but I am glad that they have their home team/family/support network there as well. These experiences have been "unique" to say the least, but I am incredibly thankful for their support and friendship.

I was discharged last night, and I am SO thankful that my family now lives closer by. Beth, my step mom, was able to visit me once earlier in the week and pick me up last night. I am not going to lie, I'm feeling pretty crummy today, but it is good to be home.  It will also be great to see my dad later this afternoon, who should be landing (any minute) from a business trip to India. Cody wrote a story about me for school, which I absolutely LOVED, and he certainly has a talent for writing! I won't post it here since it is his masterpiece, but you should ask him about it if you're curious....

I am planning on staying here for another night, and hopefully heading back to school tomorrow for classes Monday and Tuesday, and then returning for Thanksgiving. If I don't "bounce back" by tomorrow, then worst comes to worse, I go to school Monday for my home health appointment, and then drive back that evening. Thanksgiving weekend should at least give me a good enough break to be back on my feet a little bit more the following week.
For the rest of the weekend, I am planning on continuing to relax/work/write/etc. I have a bit of recovery ahead of me, but I am trying to remain as optimistic as possible that I can bounce back quickly from this episode as well.

On a happier note, if anybody is curious about some of the fun recommendations from the Food Allergy Conference (not anything promotional, just some favorite finds).....


Cookie Dough Do Bites- these were probably our favorite find, chocolate chip cookie dough that you are SUPPOSED to eat raw, and they are top 8 allergen free! They do have one product with coconut in it, but they take precautions to prevent cross contact.

Sugar Rush Sweet Shoppe- cute family owned candy shop in Irvine. They carry Vermont Nut Free, which makes AMAZING skippers (M&Ms that are nut free) and fudge! You can also order directly from Vermont Nut Free, but since I am on the west coast, it is pretty pricey to ship.

Enjoy Life Foods Chocolate Chip Crunchy Mini Cookies- I have always been a fan of Enjoy Life's mini cookies and chocolate chips especially, but I hadn't had these ones before the conference, and they were pretty delicious!

Spokin- a great app for anybody with food allergies/restrictions/intolerances/etc. You are able to review and read reviews on food products, restaurants, bakeries, doctor's offices, etc.

Free!

Sorry it took me a few days to come up with an update! Things were a little bumpy for a bit, and I was not feeling great to work on writing a post. Between my last post and yesterday, the PICU team at CHLA worked on getting me off the epinephrine (adrenaline) drip, and off of IV steroids, so I could get back to school as soon as possible. It took a couple of trials and errors to get the drip off, but after a few days, it started really messing with my blood pressure overnight on Monday night. They turned off the drip early Monday morning, and yesterday switched me to oral steroids.

Once I hit the 12 hour mark off the epinephrine drip without requiring any additional EpiPens, and they were able to get my blood pressure down, they let me go home last night! For the most part, my meds are similar. Unfortunately, they had to give me a HUGE steroid blast to keep me from swelling up, which, as I have talked about before, is not fun. The side effects are unpleasant, and the long term effects aren't great. The doctors made me a new taper schedule, which we are hoping will help me reduce the dosage faster than before. They also placed a patch on my chest to help control my heart rate better. I'm still on the continuous Benadryl pump, so nothing new there.

Since I was there for about 5 days, and on epinephrine for most of that, it did dramatically impact my strength again. It is going to take a few weeks to get back to some sort of baseline. In the mean time, I am resting at my parent's home. Although any hospitalization is super unpleasant, this experience was significantly better than my previous experiences. The team at CHLA was absolutely incredible. They went above and beyond to make sure that I was as comfortable as possible given the situation, listen to me, and "cover all of the bases." They had a plan, and stuck to it. Everyone took a genuine interest in helping me feel better and back on track. They also knew that I REALLY wanted to be discharged, and made sure that I had anything and everything I needed to do so. Having my dad and step mom close by was also immensely helpful, and I am also super appreciative of everyone who came to keep me company for a bit!

Although I'm not a "kid" anymore, I honestly felt like their support programs helped-- they kept me busy, distracted, and feeling semi normal-ish. They brought me things to keep me busy since I wasn't allowed to leave the PICU, therapy dogs who came by usually once a day, and even silly things like making sure the blinds were open to get some natural light. Having Molly there was also quite an experience-- I am lucky to have such an amazing friend. Even though I kind of ended up there by coincidence, without Molly, I would not have been "in the right place at the right time," and likely would have ended up in a much worse situation than I was.

Molly is still at CHLA, and we are working on an elaborate helicopter escape plan :) In the mean time, here is a link to send a (free) halloween card to CHLA-- they will be distributing them on Halloween, and for every card submitted, they get a $1 donation! I do NOT want to land myself back there, but I can certainly say that they are amazing people doing amazing things.

https://secure1.chla.org/site/SPageNavigator/Halloween2017.html?utm_source=in1&utm_medium=social&utm_campaign=hall17&s_src=hall17in1

I am hoping to head back to school this weekend, and the doctors said I can start going to classes again next week, taking it easy as need be. Once I am back on track, I'll be able to actually investigate the whole grad school situation a bit more, but until then, back to sleep for me~

Representing Team Taylor @ CHLA.

Well, THAT was unexpected...

When I was trying to come up with a title for this blog post, that was all I could think of-- in a strange turn of events, I actually ended up landing myself back in the hospital. I talked about in my blog post last week that I was kind of struggling to figure out my post grad plans. On Thursday, I heard about a Grad School Fair happening at USC. After my class on Thursday morning, I headed out to see if there were any particular programs at any of the schools that caught my eye.

And, I have to say, it was actually pretty awesome. There were at least 60-70 grad schools there. It renewed my hope that even if I can't really work too much, I can at least stay in academia for a bit, or do a bit of both working and school. One of my professors has been telling me for a few weeks that they strongly believe I should go into scientific writing and/or journalism, since I understand the topics, and have personal experiences with it. Since I had my previous interest in social work, I found a couple of programs that would allow me to get a combined MPH (Master's of Public Health) and MSW (Masters in Social Work) at the same time, and possibly even with an online/on campus hybrid through a few different schools.

I still don't know if this is something I want to do immediately after graduating, but I am going to see if I can at least start working on the application process. With those degrees, and even with an MSW alone, I could do a lot of different things-- school social work, hospital/medical social work, consulting for corporations and HR, private practice, etc.

On my way back, a close friend of mine who I have been talking to on campus was in the hospital at Children's Hospital LA. She also has POTS and EDS, and is also Jewish, so we have met each other at a few different Hillel events, and she is a member of Spoonies Alliance, the club I recently founded at my school. They have been having some complications potentially associated with the POTS and EDS, and although I am not supposed to visit anybody in the hospital, I really wanted to swing by, and figured it would be ok if I made sure to wear my mask, constantly sanitize, not stay too long, etc.

When I went to visit, I was going to leave shortly, and I was showing her some of the materials I picked up from the grad school fair. One of them was a lip balm. I was putting it away, and figured I would use it. I read the label-- I saw grapeseed oil and wheat germ, but I read it twice, and it had noting about coconut. As I was putting it on my lips, I got a smell of it, and my lips started to tingle. It smelled coconutty.

I handed it to my friend, and immediately got the, "yep, that is DEFINITELY coconut." By then, my lips already swelled up like a balloon, as well as my tongue and face. I immediately started following my emergency protocol-- EpiPen, extra Benadryl, and my inhaler. Normally, since I have been on the Benadryl pump, 1, maximum of 2 epi pens is ok, and I can control it in my dorm with my nebulizer and IV fluids. However, since I was an hour and a half away from school, and the emergency meds weren't cutting it, I knew I needed to have at least EpiPen for my way back. I felt worse, so I went to the nurse to ask for a dose.

Things went down hill pretty quickly, so they called the emergency team, and before I knew it I was in the ER. They have been absolutely incredible here. Immediately they started protocol, 5 doctors in the room, respiratory, 3 nurses, and got my doctor on the phone for instructions. Even though I am not under 18, they are still able to care for me because I am close enough in age, and I was in their hospital after all.

I got 4 more doses of epinephrine into my muscle, and 2 rounds of inhaled epinephrine, and still wasn't great, so they decided that they needed to admit me to the PICU on an epinephine drip through my port, the IV line in my chest. I was worried that since I was over 18, they would have to transfer me to county, but given the circumstances, and that my issue isn't uniquely adult, they could take care of me.

Originally, it was supposed to be a one night ordeal- turn off the epinephrine in the morning, out by afternoon. But since I am not on the oral chemo anymore, and my steroid dose went down, I am stuck in that multiple day reaction cycle that I used to get into. It is now Saturday, and I'm still on the epinephrine drip, AND they are blasting me with steroids again (which as I have talked about before, I absolutely hate). I was finally starting to figure out my appetite, lose the moon face, etc, but now its coming all right back again.

Not going to lie, I'm pretty frustrated-- but at the same time, this is still not as bad as it has been. I have had to be on even higher steroid doses before. It has been 5 months since my last hospitalization, the longest gap between hospitalizations yet-- for those of you who have been following for a while, it used to be every two weeks.

The angle of this is awful, but we honestly look pretty ridiculous between the kid's PJs, unicorn balloon, IV poles and tubes. Hospital gowns are still gigantic even in kid's sizes.

The care team here has been absolutely incredible. I honestly have not encountered a single individual who has not gone out of their way to make sure that I am as safe and as comfortable as possible. Since I am immune compromised, I have my own room with a view of Downtown Los Angeles. And, since it is a Children's Hospital, they take a lot of extra steps to help cope with the emotional elements of being in the hospital, and to try to prevent more long term damage. For every painful procedure that I have had done, which has really just been extra IVs or needles (with the meds they are giving me, they have to use the port AND IV lines), they are so cautious about not aggravating the situation. For the epinephrine injections, they would rub the spot first for a while, then pull the skin, to minimize the sensation. For an IV line placement today, they brought in an ultrasound machine to visualize the vein, numbing spray, and a gadget called the "buzzy" which is placed above where they place the IV, to "distract" the nerves in the area. It still took a couple of tries, but it was a lot easier than normal.

"Buzzy," helps numb the injection sites.

The doctors and nurses actually listen to me, and although we all are just trying to get me out ASAP, are being very cautious to make sure that they don't just discharge me to where I turn around and come back. Once they turn the epinephrine off, they hope to have me out within 24 hours max. Since it is the PICU, the doctors come a few times a day, so they are going to reassess if they can try to turn it off later this evening.

I have been trying to get some schoolwork and tutoring done, but being on the epinephrine drip makes it REALLY hard to study or be productive. There is a Child Life department here, who came by and brought some craftsy stuff for me to do in order to pass time, and it has actually helped a lot. I'm not allowed to leave my room since I am immune compromised, so they brought me some painting supplies, coloring books, puzzles, and clay.

Honestly, the weirdest part of it all is being here at the same time as my friend. Its one of those things that as I just said in a text, "is pretty comical in a really terrible way." I am not allowed to leave my room, but they are allowed to, so we have been hanging out a few times a day-- FaceTiming friends at school, playing a game, talking about weird crap going on, etc. Everyone is REALLY confused when they see us together-- the nurses who don't know us have said, "Wow, you look great for being in the PICU.." "Oh, I'm actually a visitor...." Today they brought me a giant unicorn balloon to add some fun to the room, and the chaplain at the hospital yesterday brought us a Shabbat kit with 2 pretzel challahs, kiddish cups, spices, cards, and electric candles, so we got to do a little baby Shabbat together. Everybody seems to think that Molly is trying to sneak in and/or out, and when people come by, it takes them a minute to be like, "wait, you're the patient? and you are too?"

School has been incredibly supportive too. The Rabbi at Hillel, as well as the Dean and residence directors have gone above and beyond, to say the least (shoutout to rabbi Danny, Dean Hirsch and Nick!). Rabbi Danny was visiting Molly, my friend, right after I crashed, so the Hillel group actually bounced back and forth between our rooms, and made sure I got some food. Pitzer has arranged for things to be brought to me that I have needed twice during evening traffic.

Basically, its a crummy situation, but at least I was in the right place at the right time, and I just have to be as patient as I can. I don't feel great, and I'm ready to get out of here, but I know I can't push things. I will post updates as possible.

Keep On Keeping On.....

Wow, I am already at the halfway point of fall semester-- fall break! The time has honestly flown by. I have enjoyed being busier, and the intellectual stimulation, but not going to lie, there have been some hiccups and challenges. Health wise, not much has changed-- still on the immunosuppressants, the Benadryl pump, and all other meds as usual. We are still continuing to try to reduce the steroids. I have made progress, but I am still at 2-3 times what would be considered  a "replacement dose" of steroids, which is what my body should naturally make. My "moon face" is starting to come down a bit,. There are good days, bad days, and ok days. Some days I feel ok, other days I feel like I it hurts to just move, etc.

In addition, about two weeks ago, the Mast Cell community lost a huge member of the team, who was truly a friend to all-- Taylor Nearon. Taylor was 20, and had the same diagnoses as me. She was really helpful for me when I started the CDI (Benadryl pump), and always seemed to know the right thing to say. Taylor fought a long and hard battle, and passed away peacefully after complications. It was so hard to hear about Taylor's passing, and it is scary, but I am comforted knowing that she is no longer in pain. Her legacy and how so many people are affected by her passing is a testament to her character and strength. She founded a non profit to help individuals with Mast Cell Activation and raise awareness. My thoughts and prayers are with her family and close friends. A great article about her, appropriately titled The Battle Ends, the Story Continues: The Battle Ends, the Story Continues

October is National Disability and Dysautonomia Awareness Months. Dysautonomia is dysfunction of the Autonomic Nervous System, which is largely responsible for the "fight or flight" response, and may of the body's most basic regulatory symptoms. There are many different types of dysautonomia, Postural Orthostatic Tachycardia, or POTS, affects me, and is common in patients with MCAS and EDS. For me, this leads to fatigue, a high heart rate, dizziness, anxiety, blood pressure changes, blood pooling, etc. I use additional fluids and salt to help control the condition non pharmacologically, in addition to meds. More information about POTS is available on my blog under the "Links" tab. In honor of National Dysautonomia Awareness Month, I, alongside a club I recently founded, Spoonie Alliance, painted a mural on a "free wall" at my school, which is essentially a wall that you can paint on at any time without any sort of formal clearance/approval process.

I am looking forward to more "Spoonie Alliance" events in the future, and creating a more accessible community at the Claremont Colleges to help decrease stigma and increase cohesion amongst students with disabilities or differences. The term "spoonies" relies to an idea that I *think* I discussed in other posts, known as Spoon Theory. The idea behind it is that individuals with a chronic illness, disability or difference have a limited number of spoons, which is essentially a metaphor for energy. Although most people have a lot of spoons, and can "regenerate" them by resting or doing something relaxing, "spoonies" run out of spoons faster, and have difficulty replenishing them. Tasks that may seem simple could be really hard for a spoonie. Here is a link discussing Spoon Theory: Spoon Theory- But You Don't Look Sick

And a link to my Pinterest board about Spoon Theory and Chronic Illnesses for comedic relief: Pinterest

Tying this into the idea of National Disability Awareness Month,  I would encourage everyone to be aware of how you go about everyday tasks, and how others may experience difficulties going through these seemingly "easy" tasks. I find that for me personally, it is some of the easiest things the most people take for granted that end up being the hardest or more exhausting. A great way that you can help a friend or loved one is to ask how you can help-- often times it is the most trivial things that may be the hardest to ask for help with, or the things we might be most embarrassed to ask about.

Another important note is on the mural we painted, that not all disabilities are visible-- although my disability has become more visible, as I have discussed in other posts, there are often situations in which people don't understand that things may be more difficult and/or inaccessible. Just because someone doesn't look sick doesn't mean they aren't-- I am always reluctant to use my handicap placard because people will say things, or sit down in public places when I am really dizzy.

I am starting to become more ok with these things, but it is a journey. Since Taylor's passing, and as thoughts about grad school and life after college come up, I have been feeling somewhat apprehensive. A lot of the things I imagined myself doing before-- teaching, working as a social worker-- are simply not suitable environments for someone who is immunocompromised, and I don't know how much and in what capacity I will be able to work. Sure, I could stay totally stable where I am, improve, or decline but nobody really knows. There is no timeline, no sense of stability. There aren't any great treatments for any of these conditions, and treatment is a lot of guesswork, trial and error.

A common misconception (of the general public) is that the CDI, or Continuous Benadryl Infusion that I am on, is a "cure"-- although it has allowed me to not live in the hospital and become more functional, I still experience symptoms on a daily/nearly constant basis. It was only done as a life saving measure to prevent me from living my life in the hospital (for those of you who are newer followers, I began this treatment after exhausting most other options, and being hospitalized for about 2 weeks with no improvement). I did know this going into it, and I have discussed this in previous blog posts. Depending on the day, it can range from itching or nausea, all the way to deep bone and muscle pain, fatigue, dizziness/syncope, swelling, cramping, yada yada. I have a pretty high tolerance threshold at this point. I do still have to use an EpiPen one to two times a week. Some days my symptoms impact my functioning more than others. I am not trying to discount that there has been a lot of improvement in my condition over the past 6-10 months. There is NO way I would have been able to do anything that I am doing right now a few months ago. It is absolutely doing it's job. I am having more "better" days--but, I still wish there was a magic wand.

It's frustrating. And as many individuals with chronic illnesses know, it is hard to feel unpredictable, and to not know how many "spoons" I will have 20 minutes from now, let alone 2 weeks from now, or 2 years from now. And it can change any minute--- one minute I feel ok, and the next I feel absolutely awful. But in those situations, I just have to take a step back, and try to take care of my needs. It's a learning process, and is going to take time, as well as physical and emotional healing. I have to become more ok with not being ok. One of my doctors calls me a "super coper"-- I try really hard to hide when I am not feeling great, I know all the coping mechanisms, and all the distraction techniques. But, its not a sustainable way to live.

Academically, things are going well-- I am doing well in my classes, and having no problems keeping up. Still debating the whole grad school/going right into the field thing-- I think I am going to just have to evaluate things as they go, and reassess.

Tonight, I did some baking to try to do some "self care." I am trying to find things that I enjoy, which honestly has been harder than I had hoped. Our Fall Break means that I have this Monday and Tuesday off school, so I am enjoying a long weekend at my dad and step mom's house. Until then, I am hoping for some good sleep, maybe more baking and craftsy stuff, and a little R&R. The house still smells like chocolate meringue cookies, so maybe I will just have to make them again :) Also sending my love to all who have been affected by some of the tragic occurrences the past few weeks- Vegas, the wildfires, earthquakes, etc.

I also have included some fun graphics below about Dysautonomia for Dysautonomia Awareness Month:

Follow Ups and New Routines

It has already been three full weeks of classes! The time has simply flown by. I am already rapidly approaching my first sets of midterms and papers. I am currently enrolled in 4.5 credits (in which 4 is a full course load)-- Psychology and Law, its corresponding lab course, Bioethics, Gender Theory, and Sociology of Health and Medicine. Although all of my classes have been really interesting thus far, the bioethics and sociology of health and medicine courses have been particularly interesting wince they are relatable to so many of my day to day experiences.

I am getting into a new routine with class, homework, studying, and (attempting) to take care of my health. Unfortunately, I did have my first ER trip for a reaction last week. Luckily, introducing myself to the fire department paid off, and they knew what to do. I had gotten stressed out because my ride from one class to another was late, so I tried to fast walk to my next course during my difficult time in the morning. Eventually I was picked up, and I tried to go get a water before going to my class because I noticed I was dizzy, but I passed out, and then had an anaphylaxis episode. I was armed with a note from my mast cell specialist, so once everything stabilized, I persuaded them to release me, and I pushed myself to go to class later in the evening.

I have classes Mondays through Thursdays, with Mondays and Wednesdays being my longest days. By the time Thursday mid day comes around, I am totally wiped out. I have been able to go home every other weekend or so, which has been amazing, and I was able to go home for my dad's birthday. It has been great having them close by, and its helpful to know that my family is there if I need them.

Socially, things have improved, but still have been difficult. I just don't have the stamina like I used to, and it has been harder to distract myself. I am not finding as much enjoyment in some of the things that I used to do. Nevertheless, I am incredibly thankful for those friends who have reached out to me and stood by me in this transition, and I have been trying to reach out as well, which seems to have been helpful.

Last weekend, before going home for the weekend and my dad's birthday, I went to San Diego for a follow up appointment with my mast cell specialist at Scripps Clinic.  I was able to go down to San Diego a little early, and check out a top 10 allergen free bakery (which was SUPER cool and delicious), and see a friend who has the same conditions as me, and visit her at her school for her birthday. My dad met me there, and we had my appointment, then drove home. Magically, after my ER trip, the rejection for the oral chemo was reversed (although that may be unrelated). However, because I had already kind of went through the withdrawal from it, and we know that I was allergic to some of the excipients (other ingredients) in the medication, and it is still a form of chemo, we are trying to avoid going back on it. Instead, since the immunosuppressant is showing signs that it may be working, we are doubling that dose, and may double it again. We also adjusted some of the settings on the Benadryl pump to see if it provides a more complete coverage of my symptoms. Unfortunately, everybody is kind of "flying blind" in our situation, but I was extremely relieved that he was not giving up on me (something I had been worried about). I am still using EpiPens at least every few days, which is not ideal, but if it keeps me out of the hospital, then I will do what I can.

Not going to lie, I am worried about the immunosuppressants and school. From the steroids that I am still on (although we are going to try to ween it down very slowly) and the immnosupressants, as well as my existing immunodeficiency, I CAN NOT get sick. If I do, it likely would crash my adrenal system, and require hospitalization, which comes with its own host of infection risks, and I don't trust the hospital here. I am trying to do what I can in terms of hand washing, cleaning off surfaces, etc, but I am on a college campus after all, so I can only do what I can do. I am working with some other students to start a club called "Spoonie Alliance" which will be a highly accessible/fun event group that plans substance free alternative events on some weekend evenings.

My POTS (postural orthostatic tachycardia) symptoms have been particularly debilitating lately. Even with following all of the doctor's recommendations such as a high salt diet, fluids, etc, I can't stand in line for more than a couple of minutes without feeling faint. If I walk around, I am ok, because my circulation keeps going, but standing in lines is a no-go. I am trying to exercise and do my physical therapy to help as well, but it doesn't seem to be making much of a difference there. So at the dining halls, in addition to the food allergy request, I sometimes ask for help with getting food from the back, since it is safer with the food allergy anyways, and people have been pretty accommodating. Since I am closer to Scripps Clinic now than Stanford, I have an appointment with another POTS specialist at Scripps the next time I follow up with the mast cell doctor to make sure that we have all the bases covered.

Over the next few weeks, as the stress levels continue to climb, I keep reminding myself that I need to implement  more self care, but naturally, that is easier said than done. Leaving the weekends to kind of "crash" ensures that I can make it through my Monday through Thursday classes. I only missed one class so far (when I was in the ER), so I am staying caught up on my work, and trying to stay ahead of the game as much as possible, but at the same time, I do need to occasionally let myself take a break, because I know that if I don't tone things down, I am going to end up crashing again. I suppose it is just difficult seeing everyone around me with higher levels of energy, going out, exercising more, and doing other things that are beyond my capabilities, and that leads to guilt. I try to just redirect that energy towards being productive. My normal is so different than others-- heck, in my class the other day, I started having shock symptoms, went outside, did the epipen, and came back in. Again, probably not the best self care, but I got through it. It is hard to convince myself to engage in more self care when I know I got through it, but at the same time, I have to be more aware of my needs in the first place to avoid these situations.

The immunosuppressant was increased today, so I am crossing my fingers and toes that it kicks into full gear sooner rather than later. I was hoping to travel with my family after graduation in May, but if things continue at this rate, the doctor said it was unlikely. But, it is a goal (in addition to actually graduating itself). I appreciate the love and support, and ask that you please continue to bear with me!

Losing Invisibility

Good afternoon everybody! No real updates at the moment. I started classes, and for my bioethics class, I wrote this short reflection, which I actually felt proud of, so I figured I would share it here.

As someone who has long identified as having an invisible disability, and having served as an effective self-advocate in the past, I did not anticipate that returning to college with an “invisible disability gone visible” would be so difficult. Although I have worked to try to keep my identity separate from my disabilities, some of my physical and cognitive limitations end up shaping everything I do, both consciously and unconsciously. For example, as a result of my difficulties with auditory processing, I tend to take notes on the computer, which sometimes has differentiated me from other students, particularly in courses that don’t allow computers. It is something that I know works best for my style of learning, and my “go-to” notetaking method. But outside of classroom situations, my auditory processing problems generally remained invisible, as well as my physical health conditions.

            However, as my Mast Cell Activation Syndrome has progressed, and now require around the clock intravenous treatments, my disability is not only visible, but pronounced. Most individuals, especially twenty-one year olds, don’t walk around with a pump that clicks every two minutes. Nor do they have facial rounding, bruising, tremors, and all of the other side effects which come as side effects of the steroids and other medications that I am on. Initially, this took some getting used to even around the house and my family, but returning to school, I am more conscious than ever of the effects of my condition and its associated treatments. I am constantly aware that I am different from “the norm,” and not able bodied. Although it is rare for this to be stated to me explicitly, the stares, pity glances, and silence that consumes a room when I walk in is telling enough.

            I suppose that I am more conscious of other individuals’ behavior changes because my disability was one somewhat invisible. I was fortunate enough to be “invisibly disabled” for most of my life, up until getting sick in college. Reflecting upon this idea, I wonder how individuals who are visibly disabled from birth cope with others noticing their differences. Do they also feel self-conscious about it constantly, or is that something that is “the norm” for them? I believe that young women in particular suffer the most from the problems associated with being “invisibly disabled.” Something that I have experienced personally and seen in many of my peers is the assumption that any physical symptoms is psychosomatic until proven otherwise. I do believe that there is a deep connection between the mind and the body, which creates a constant feedback loop, but it is important to differentiate correlation and causation. Just because someone has an anxiety disorder doesn’t mean that their pain or nausea is simply from nerves, and can be cured from “just calming down.” Although anxiety may be a contributing element of their physical symptoms (and sometimes the cause of it), doesn’t mean that one should assume that it is psychological.

            A saying that I have heard from others in the chronically ill community (which is particularly strong online), is that doctors are told in medical school a quote coined by Dr. Theodore Woodward, “when you hear you hear hoof beats, think of horses, not Zebras” (1940). However, from someone who is a zebra, and was labeled as a horse for most of my life, I think that it is critical for medical professionals to think of horses, but also keep in mind that zebras are out there.

References

Sanchez, A. (2012, November 13). When you hear hoofbeats, don't think zebras. Retrieved from

https://www.digitalistmag.com/lob/sales-marketing/2012/12/06/when-you-hear-hoofbeats-dont-think-zebras-022309