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: