PICCing and Choosing My Battles

I am just now realizing it has been 2 months since my last blog update-- whoops. Since my last post, I have been working hard on recovering from my last hospitalization back in May, continuing my work as a Family Resource Coach whenever possible (and loving it), and even got in a VERY much needed vacation!

We left at the end of June for Disney World and a Disney Cruise to celebrate my college graduation and my little brother's fifth grade graduation. My doctor was a little reluctant to let me go because I have been having some electrolyte issues (see boring medical update below if interested), but I was SO thankful that I was able to. I have always loved cruising, particularly Disney, so the opportunity to go on an 11 Day trip on an itinerary that is only offered once a year was too great to pass up. This trip was certainly complicated by more health related logistics from previous trips, like IV medications, pumps, coordinating lab timing, etc., but everything fell into place really well. We flew in two days early to have a "buffer" for shipments and lab work before getting on the ship, and time to adjust to the time change and recuperate from traveling. We got on the ship in Port Canaveral, Florida, spend some time at sea, followed by Aruba (checked out coral reefs in a submarine), Martinique (wheeled around the immediate port area), Barbados (stayed at the in-dock shops), San Juan, Puerto Rico (my personal favorite), and Castaway Cay in the Bahamas (I went to a shore side store then hopped back on the boat), which is Disney's private island.

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The food on the cruise was absolutely amazing, and I certainly would recommend it to anybody with food allergies. Everyone really went above and beyond to find me safe, delicious food so I could indulge like everyone else! Some of my favorites included the top 8 allergen free molten lava cake, a cookies and cream sundae made with Enjoy Life Cookies, Udi's muffins, and Katz brand donuts. I also had the opportunity to meet another young adult with the same conditions as me, which was shocking since the conditions are so rare. I really enjoyed getting to know and spend time with her, and I was also thankful to meet a new friend who "gets it!"

After coming back from the cruise, I also got an opportunity to meet my friend Brittany for the first time in person. Brittany and I have been talking for a couple of years now about our common academic and social interests, in addition to the fact that she is also impacted by the same conditions. We both weren't feeling 110% physically, but we still had an amazing time, and certainly stayed occupied! We figured out how to get into the pool at least up to our waists with central lines, tie dyed hospital blankets to make them more homey, explored the various FroYo shops with allergen friendly options in the area, crafting, and did some baking. The time really flew by, and we are already working on ideas for another meet up!

Now, the health update. Since my last blog post back in May, health wise, things were improving, but very slowly. I have still been having issues with gut/nutrient absorption, and particularly a loss of electrolytes, which can be a problem because a) it makes me feel crummy and b) electrolytes (or a lack there of) can cause cardiac complications as well. After lots of lab work, it appears that there is an autoimmune process (probably a component of the Sjogren's, Hashimoto's whatever) that is going after my kidneys and/or parathyroid that is throwing things off, but we are still waiting for a full interpretation of those results. My GI track seems to be joining the party as well, as my labs look like I am not absorbing my immunosuppressants, which also impacts nutrition. This obviously poses a major issue and complicates treatment.

This past Friday, I had my regularly scheduled IVIG infusion. I was already having some signs of a flare up, but was hoping it would help. This reaction just didn't respond to meds like it should have, so the infusion center sent me to the ER. There, things kind of went down hill, and I ended up in the ICU on an epinephrine drip. They weren't able to get a vein that would hold the additional IV needed for the drip, so it took a whopping 10 tries (which was absolutely miserable) to get an IV that only lasted for a couple of hours. I am still in the ICU, but supposed to be getting moved to the step down unit this evening. I'm a little concerned about how step down will go based upon my last hospitalization in San Diego, but certainly am excited for more privacy and have to give the team here the benefit of the doubt. This is my first time at this hospital close to my parent's new house, and there have been some issues so far (including being served cake with coconut on it), they are trying and have been responsive.

The next morning, they decided to place a PICC line in addition to my port to provide additional reliable IV access without having to dig for veins. I have had them before-- it is a tunneled IV that is placed in my arm and leads to my heart. The current plan is to keep it in place until my single lumen port can be switched to a double, because IVIG, Epinephrine, and another new infused medication the team is hoping to try are not compatible with the Benadryl that is infusing 24/7 through the port. They de-accessed (removed the needle) from my port in the mean time and are using the PICC line instead to reduce the infection risk that would arise from using both the port and PICC at the same time. If my arms heal before they can get me in to place a double lumen  (lines/separate tubes) port instead of my single lumen, then they will pull the PICC line out early. I'm really uncomfortable with the idea of having more than one central line because of the infection risk, but I also understand why it makes sense to keep it in until we have a better back up plan.

What a double lumen port looks like under the skin. My current port only has one clear bubble.

As all hospitalizations are, this stay has been difficult, but even more so because of the length of stay, and honestly, frustration. We know that everything is this autoimmune sh*tstorm, but there really isn't a way to stop it. I am genuinely concerned about what my future holds, and how this disease progression is going to go. There are a whole lot of unknowns and not a whole lot of answers, even from the "best of the best" in the field. I don't know what long term quality of life holds, nor what is going to happen next. It honestly is a horrible position to be in at my age, but at this point, there's also not a whole lot I can do about it. I am sick and tired of being sick and tired, and also frustrated that even when I do everything I am supposed to, things still progress.

This cascade is making me nervous about graduate school. There have been some snags in the process of getting accommodations and field placements sorted out. I am trying to avoid it, but I may need to defer enrollment for a year to get a better handle on things. I have to ultimately make a decision in the next couple of days, so I'll see how things go here, and I'm continuing to speak with disability services to ensure that everything falls into place. On the bright side, my health insurance finally approved my custom ultralight wheelchair. Although we were not able to secure power assist in time, it will be helpful to at least have the chair.

In terms of my hospital jailbreak, it is yet again boiling down to an inability to come off IV steroids. We tried once already to no avail, so we are going to try again tomorrow morning. I have appreciated having some visitors while I have been here, and food that is more edible than what they serve! :P  One new oral medication was started this morning, although I was told it likely won't have much of an effect, and if it does, will take 3-4 months. They may try one other infusion while I am inpatient, which still takes 3-4 weeks to work, but is better than 3-4 months.
We are hoping for discharge later this week, so keep your fingers crossed!

Operation LA or Bust: Success

I am very happy to announce that "Operation LA or Bust" was a success, and that I am resting back at home! I was discharged yesterday late afternoon, and my dad and I got home around dinner time. I'm so relieved to be back in my own house and bed, but each time when I do get discharged, it is unfortunately a reminder of how much strength or energy I've lost during a hospitalization. It's really frustrating to feel that I'm doing so well, and have made so much progress health wise, yet can't get around even in my own house. It almost feels like I've been in some sort of time warp for the past couple of weeks. I have my 22nd birthday to look forward to in a little over a week, although my brain isn't quite there yet.

I'll get my my strength back, the never ending steroid taper will resume, and the moon face will come and go again. But in the mean time, any progress is progress, and I just have to continue to remind myself (again) that slow and steady wins the race.  I've lost a lot of body mass, including muscle, which will take time, physical therapy, and lots of super yummy nutritional shakes to build up :P I'm hoping to try to work for a day or two this week to help get "back in the groove."

Between now and July, I am participating in the virtual "Denim Dash," a 5K for rare disease awareness, something that is obviously quite near and dear to my heart. This race is something I can complete from home-- walking, wheeling, pedaling, whatever. If you are interested in donating or joining the team, sign up here: https://www.crowdrise.com/o/en/campaign/the-mast-cell-crew?utm_campaign=oc&utm_medium=facebook&utm_source=crowdrise

I get food cravings on steroids, but once they're actually in front of me, I'm uninterested. This was an ongoing point of light hearted conversation between my dad and I and the medical team-- "Cookie Mountain." They kept bringing them to me and I decided to try to have some fun with it. 

Good bye and good riddance!

Well, I’m a College Grad! (But Mast Cells, Autoimmune Stuff and Life can Still Rain on the Parade, Stuck in San Diego)

It’s official, I now hold a Bachelor of the Arts degree in Psychology and Sociology from Pitzer College! I still can’t believe I’m done. I have to admit I have been neglecting the blog a bit, but things have been quite the whirlwind since April when I began working at Children’s Hospital Los Angeles (CHLA), which has been amazing so far! Between final papers, orientation, and wrapping up my college career, time has flown by. Nevertheless, I managed to graduate with a 3.83 GPA (technically a semester early), which (selfishly) I am proud of. I also made my decision for graduate school…… I will be attending UCLA starting at the beginning of September to pursue my Master’s in Social Work (MSW).

(Photo Creds to Andrea)

I wish I could say that everything has been rainbows and butterflies, but I think there is a consensus that those sorts of expectations are unrealistic. In the early hours April 21^st, my grandmother, Shelley Balonick Davis, passed away after a health decline that ended up taking a more rapid turn for the worst. This was a devastating loss for the entire family and quite frankly, most people who knew her. I thankfully was able to spend the last couple of hours with her in the Bay Area. While we were in the Bay Area, a few of her nature pals were hanging out around their house. Probably a coincidence, but I’ll take it as a sign that she was checking in on us. Despite this loss, and certainly far from ideal timing, I know that my grandmother would have been so proud of me for my academic, career and personal endeavors, and was at my graduation (and all of our recent happenings) in spirit.

At the funeral, I got a voicemail that I was able to get an appointment with a physician at Mayo Clinic in Arizona that specializes in using IVIG for dysautonomia (POTS/Postural Orthostatic Tachycardia), Mast Cell, etc. I had been waiting for 2 years to get in, so I can’t help but think that maybe there was a little message from Grandma hidden in there. The appointment went really well, and he had some suggestions on how to better fine tune my medication regimen. He also asked me to repeat all of my autoimmune antibody panels. These have been repeated a few times, but he said he wouldn’t be surprised if they started showing up positive at some point.

Met Erica of Celiac and the Beast at the airport waiting for my flight that was 4 hours delayed to Arizona!

Sure enough, this round of labs now showed autoimmune antibodies for Sjogren’s Syndrome and that I appear to be developing Hashimoto’s Disease. These are both autoimmune conditions which can explain why my POTS and Mast Cell Activation Syndrome (MCAS), particularly when combined with Ehler Danlos Syndrome. I never thought it would be a good thing to add yet another term to the ongoing diagnosis list, but it does help explain my symptoms and why they respond to the meds they do. It doesn’t change treatment much either, but again, can maybe shed some light on new developments in the future.

Graduation was shortly thereafter, and also a really positive and celebratory experience. I was a little nervous about the logistics of standing and waiting in line, etc, but I am very appreciative that Pitzer staff as well as friends and family made things work. I was also really appreciative for everyone who came out to support me from near and far. It meant a lot to me, and I was so happy to be able to catch up!

Celebrating Mother's Day....

Celebrating Serena's birthday..

Reuniting from near and far!

Thankful for the love and support for these awesome deans!

On Tuesday, I drove down to San Diego with two friends from school and part of my POTS “crew” for outpatient follow up appointments. We went to dinner when we got into town, and I seemed to have a reaction to a muffin—despite the fact that it at least was not supposed to have anything I can’t eat in it. I used my EpiPen and other emergency meds, but I felt a fluttering in my chest that I have had before, but typically isn’t a super fantastic thing. That component resolved pretty quickly, but I was still reacting, so my friends took me to the ER. I absolutely avoid the ER/hospital at any and all costs, so I refused to get out of the car for about 40 minutes. Eventually I reluctantly agreed to go in, but only for a dose of steroids, then go home.

At least Molly and Serena were having fun in the ER?

Unfortunately, that didn’t go as planned either. By the time I went in, it was kind of to the “point of no return.” I was admitted to the ICU for observation. I began to improve, so I was transferred to the Telemetry/ICU stepdown floor. When I got there, there was a series of unfortunate miscommunications and challenges. I wasn’t able to get my emergency medications as quickly as I needed them. When I need the meds, I need them almost immediately before things begin to spiral. There were also 2 vital sign checks missed, a breathing treatment, and 1-2 doses of my immunosuppressant. 

I can’t even begin to say how fortunate and lucky that two of my friends, Savannah and Molly, were with me in that room. They noticed all afternoon that things were declining, and asked for a re-evaluation, but they were told that someone would be coming soon, or it was the middle of shift change. 

By the time the appropriate team did arrive, I desperately needed epinephrine. My memory from there is more foggy, but from all of the accounts, the doctor asked for Epi. We had already used the EpiPen next to my bed, so the nurse tried to call down to the pharmacy to get another. The nurse stated that she didn’t know that the crash cart down the hall contained epinephrine, which is a MAJOR issue, because that is considered to be standard knowledge in any healthcare environment. I was turning blue at this point, so the doctor, Molly and Savannah used Molly and Savannah’s EpiPens. Those thankfully worked, and I was transferred back to ICU, but most certainly in worse shape than when I arrived.

I was told that if Molly and Savannah had not been there or had their EpiPens, I literally would have died, because there was no crash cart in the room. Even if there was, I didn’t have enough of an airway, which would have meant they would have to attempt a surgical one (but that equipment wasn’t there either). Molly, Savannah and the rapid response physician undoubtedly saved my life.

To avoid these incidents in the future, the hospital is conducting a thorough investigation, including re-training, documentation, stocking more epinephrine autoinjectors, etc. Many managers, supervisors, etc. have come by to debrief. I am at the hospital where my specialty care team is in La Jolla, which has helped facilitate communication as well. 

My dad has customized the info board in my room to be jailbreak themed.

Delicious looking dinner, am I right?

Since then, things have been improving, but I have now been in the ICU for more than a week. The physicians and staff have all been fantastic, with the exception of that one floor. We are making progress- I got an extra dose of IVIG, we doubled my immunosuppressants, and increased the rate of my continuous infusion. We are hoping to get out of here tomorrow, but it may have to be Saturday. I have been blessed to have had lots of awesome visitors while in San Diego (shoutouts to Kara, Gabriela, Julie, Savannah, Madison, Molly, Serena, Willa, Aviva) and my dad has been bedside since the incident last week. Nevertheless, it is still frustrating, and disappointing. I am so thankful for the progress that I have made over the last year—I finally have my life back. And this one hospitalization does NOT jeopardize this progress by any means. I just have to remind myself that slow and steady wins the race. All that is left is the final push to oral steroids (instead of IV).  I am also VERY excited to have non-hospital kibble (the food being nasty is a dramatic understatement).

I’ll keep posting any updates as I have them but hope to jailbreak soon!

Last, but finally not least, I will be fundraising for the Denim Dash this summer, which is a virtual 5K for rare disease awareness. It allows me to fundraise for a cause that is near and dear to my heart (and I can walk/roll, bowl/whatever): https://www.crowdrise.com/o/en/campaign/the-mast-cell-crew

83 Days and Counting!

I can't believe how quickly this semester is going by so far! It feels like I just got back on campus a few days ago, but we are already approaching the middle of the semester, which means... 83 days till graduation! It is starting to become more real, but it still is crazy to think that I have been in college for four years, and that I'm almost done. It is also very bittersweet-- I am "ready" to be done with college, but it is also hard to look back on the last four years and see everything that has happened. Although I am a hell of a lot more confident in my self and my abilities, it is also sad to think that I wasn't "sick" four years ago, and how dramatically my life has changed as a result of that.

Pitzer Class of 2018! (I'm on the right, second row from the bottom, photo credits to PZ)

IVIG is still a godsend-- with the exception of one ER trip back in mid January rom the needle going into my port cracking which caused a reaction because my continuous infusion was stopped for those couple of hours, and one other incident, I have not needed to use the EpiPen, and my steroid dose is the lowest it has been in years. The moon face is finally going away! I actually feel like a normal, functional human being-- sure, I don't have much stamina, and I still have a lot of symptoms, but I'm functional, and respond to treatment when I need it, which wasn't the case before. The IVIG days in itself still sucks. The past few times, I have gotten really severe migraines, body aches, dizziness, some nausea, and a low grade fever with my infusions, but I also know that I will feel better 3-4 days later. I can also tell when it is starting to wear off, as I get more fatigued, and I know that I am "due." My next round of IVIG is at the beginning of March.

This month, February, is also rare disease awareness month! I have included some infographics made from the Mastocytosis Society below. Not only are they fun and colorful,  but I think they provide some quick insight into the basics of mast cell disease, and how there is so much variation even amongst individuals with the same diagnosis in terms of triggers, tolerances, response to treatment, etc. I am working on planning an event at school for the first week of March to close of Rare Disease Awareness month, so stay tuned!

A reminder/PSA-- IVIG, which I get once a month, is made from blood donations. So if you can, please please donate blood! Not only is it important in the wake of recent tragedies across the country (and globally), but there is also a need for it day to day for a variety of diagnoses and treatments.

This weekend I have been working on a bunch of readings and essays to get ahead for this upcoming week. My core group of grad school apps are submitted, and now I just apply to jobs, and wait to hear back. I head back to San Diego on Friday for my cardiology follow up. My most recent labs were a little wonky, so we're making sure that I am still getting enough nutrition. I also am really excited because we are doing a get together for other young adults with POTS, MCAS, and other related conditions this weekend in San Diego, which I think is going to be a lot of fun! I have made a lot of really great friends online who "get it," so getting to see everyone in person in special. I am actually doing research for one of my courses this semester with one of those friends, which should be cool as well (but if I talked about it, then it would eliminate you from the potential participant pool :P).

So, long story short, things are pretty status quo, which is a very good thing (and a nice change)! I'll post updates as I figure out more of my new adventures over the next few months.

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.

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