24 days and counting.....

My apologies (again) for such a long gap between posts. Granted, I have a fair number of excuses that I could use to say why I haven't posted, but in all honesty, I've been kind of dreading trying to sugar coat my current situation to avoid sounding like I'm whining. For those of you who are friends with me on social media, you may have seen that I have been inpatient at USC Keck---- for the last 3.5 weeks. And as much as I would love to report that I'm seeing really dramatic improvements, feeling better, and on my way out of here, I would be lying.

Since my last post, I had another 2 recurrences of the stubborn UTIs, and was inpatient yet again at work after another IVIG reaction. In between admissions and more rounds of antibiotics both at home and inpatient, I was trying to still manage all of my mast cell and angioedema (swelling) symptoms, my online patient advocacy certificate classes, my work at CHLA, and just life in general. My dad, stepmom and brother had a long planned trip to Israel planned, and we all had made ample preparations to ensure that I had a "backup" plan in case my immune system continued to go rogue while they were gone. I did ok for like 2 days, and on day 3, started to have a dramatic increase in my symptoms and stubborn swelling in my lips, tongue, mouth, throat, and eyes. My uncle Marc did a fantastic job of taking care of an monitoring me, and we went to the ER, but stayed in the parking garage because all of my medications finally started to work, and then went home.

The next day, the swelling came back with a vengeance. Yet again I tried all of my home emergency meds, called the doctor, and tried a more aggressive regimen-- nada, so it was off to the ER we went. This time, I was having a really difficult time breathing from the swelling, and they couldn't manage it either. Usually, an epinephrine drip (adrenaline/what is in EpiPens), makes a pretty substantial difference in conjunction with other medications, but similarly to my episode in April in which I had to be intubated (breathing tube placed/on a ventilator), it simply wasn't enough. They were concerned that they would lose my airway, so the ER doctor frantically was calling to larger hospitals in the area with more abundant resources to try to transfer me out. Both of UCLA's ICUs were totally full, and I'm too old to be transferred into CHLA, which ended up being a blessing in disguise. They called USC, but were told that the ICU was full, so the doctor himself called and begged them to take me, and they found a bed in their medical ICU.

I was transferred to here (Keck USC) via Critical Care Transport on the epi drip at about 2 AM on 6/26, and I am STILL here. As the title states-- that makes my stay 24 days so far. I was so scared to be at yet another new facility with physicians I wasn't familiar with because of so many of the traumatic experiences I have had before. Although this is my longest admission yet, with the most treatment-refractory symptoms, pain, and swelling, the care that I have received here has been nothing short of phenomenal, knock on wood. All of the staff and physicians here have been incredibly kind, compassionate, thorough, humble, and willing to go the extra mile to make sure that I have what I need.

First set of lights

However, little progress has been made. Nevertheless, this is not due to a lack of effort by any means. We still have no idea what could have caused this episode, and why it has sustained for so long. The longest I have ever been on an epi drip is about 5-6 days--  I am STILL on the epi drip, which is unheard of for non-heart patients. The rate is down, but we have been at a stalemate at the current rate. Same on IV steroids, which cause the horrible side effects like the osteoporosis, compression fractures, cataracts, etc, but again, no luck in reducing the dose without potentially threatening my airway.

Got pumps?

In the mean time, we have tried additional rounds of IVIG at an even slower rate
before, replaced my extraordinarily low iron, started continuous Pepcid and Ketamine drips on top of my existing Benadryl and epi drips, started a course of oral antibiotics to ensure that there is not any bacterial overgrowth in my gut causing my malabsorption, and found a formulation of the oral chemotherapy med (Gleevec) that I was on a few years ago that doesn't have ingredients I'm allergic to in it. We are continuing all of these treatments, but still, no luck so far. My PICC line in my arm, which is one of the two more permanent central lines/IVs that I had cracked (I also have a port, which. is in my chest under my skin), so I had to have a new one placed in my other arm. They are planning on placing another Hickman next week, which I have had (and posted about) before, so they can remove the PICC.

PICC #6

I still can't believe that I have been in here for more than three weeks. It is so incredibly frustrating and disappointing to see my body totally betray me over and over again, but I am also extraordinarily thankful for the quality of care that I am receiving here, and the fact that I'm able to place confidence in that care is a rarity. I have been continuing to work on my online classes, many many crafts, and other things to pass the time. Both my mom and uncle were extraordinarily helpful while my dad, stepmom and brother were out of town, and continue to do so now that everyone is back. I have also loved having visitors, and appreciative of those who have made the "schlep" out here to see me, since I'm a good hour and a half to two hours away from home. My mom got me some string lights to decorate the room, and I have been adding my crafts around the room when I can too. I have continued to do my diamond art, started some string art, and have been making animals out of the IV vial caps to pass the time. There also has been quite a few other MCAS patients here that I have gotten to meet, which has been cool as well. I also got the fun of being in the hospital for a 7.1 and 6.7 earthquake (which was insane, by the way),

Vial cap art for staff

Pet therapy with fellow zebras

While we continue to do trial and error, we're working on trying to improve my nutrition when possible, and going outside at least once a day to help maintain sanity, and I'll post updates when I can!

For those of you who haven't seen me swell, this is considered to be mild lip swelling.

Thankful and Bye Bye TPN!

Although my last few blog updates have been relatively negative, I wanted to start off this post (which is finally more positive) acknowledging the fact that I have so much to be thankful for. The past few months have been absolutely positively brutal, but the past couple of weeks have served as a reminder to take a breather and count my blessings.
 In my last post, I mentioned the severe anemia and admission to UCLA in Santa Monica for the blood transfusion, iron infusion, and PICC line replacement. That seemed to help with my energy, and the new PICC line they placed seems to be agreeing with me more than the Hickman and my last PICC did. It turns out that what we kept thinking were infections were actually a reaction to the material that the actual line is made of. It is currently being used for the continuous IV Benadryl, fluids, Pepcid, and steroids.As we anticipated, the GI scopes/biopsies and genetic testing didn’t reveal anything helpful, although as more is understood about MCAS and the other conditions that impact me down the road, it could come in handy for me or other patients.
 All of the central line frustration and concerns raised the urgency to get me off TPN even though I am not up to the goal weight yet. My oral food intake has been up, so we decided to cut my TPN in half for a week, and monitor my weight and electrolytes, and then reassess. They both seemed to hold for the week of half TPN, so we cut it entirely. I have now been off TPN for about 2 weeks, and so far, my weight is holding (thing to be thankful for #1). My electrolytes have been borderline a couple of times, but not to the severity they were before starting TPN. I am still supposed to work on gaining more weight, but as long as I’m maintaining or gaining, and not losing, I should be able to stay off of it! It certainly is nice to cut out that prep work from my nightly routine.
 I have been also trying my best to work one day a week for both my sanity and a change of environment. My boss has continued to be extraordinarily supportive, and I love what I do (thing to be thankful for #2). The commute is brutal, as it can take up to 2 hours each direction with traffic, which is absolutely exhausting for me but one day a week is worth it. Having that day where I am NOT the patient is refreshing.

Dogs dressed up for Thanksgiving at work! 

November 8^th was a challenging day for my family and community as a whole. For those of you who don’t know, my dad, step mom, brother, and I live in Thousand Oaks, CA. A little after midnight on 11/8 I was woken up by Facebook emergency alerts stating that a shooting had occurred at Borderline Bar & Grill, a restaurant close by, which actually shared a parking lot with my infusion center. I had not been there before. Information was just coming out since the shooting had only occurred an hour before, but by the time I woke up in the morning, the details of the atrocity began to emerge. It felt surreal to be seeing Thousand Oaks and buildings that I recognized on CNN. I did not know anybody who was injured or lost their life during this incident (thing to be thankful #3), but I know many people who did. One of the umpires for my brother’s baseball league that him and my father recognized was one of the victims.
 That morning already felt like a time warp, and I was scheduled to go to work that day. I left early because part of the freeway was still blocked off, and I would have to pass the shooting scene on the freeway to get to work. When I did drive past on the freeway, it was eerie—the parking lot was still full of cars from the night before, cars that I knew belonged to the victims. My thoughts were with those who had loved ones there, and I could only imagine the pain they must have been experiencing.
 I was at work, and by the early afternoon, I was experiencing symptoms of a mast cell flare up (itching, swelling of my lips and tongue, hives, etc.). I gave myself additional Benadryl, inhaler, etc, but the episode didn’t seem to be fully responding. I was terrified of having an episode in a patient’s room or not being able to make it to a reliable medical facility if I needed emergency medical attention since I am not supposed to use the one at Children’s. I decided it would be best to head home early so I would have access to more of my emergency meds if needed. My step mom texted me to let me know that I should wear a mask when I got home because there was a fire on the other side of the freeway, but I didn’t really think twice about it.
 I was approaching the 101/405 interchange when I got a call from my dad saying that our neighborhood was just placed under mandatory evacuation orders, and that they were packing up the essentials and needed to leave now. The fire jumped the freeway, and we received emergency notifications saying that we needed to immediately evacuate. This was the Hill fire that started while I was at work, the Woolsey fire had not started yet.
 Before I got this call, I was already debating pulling off the freeway to use the EpiPen or go to an ER because I wasn’t feeling well, and I still wasn’t responding to my other emergency medications. I decided to get on the 405 instead because I have family who lives close to UCLA, and I figured I should be close to where I could receive medical care if I needed it. I was on the pass and still couldn’t control my symptoms. I looked to find a place to pull over to use my EpiPen and call 911 if that didn’t work, but I didn’t realize there aren’t many places to pull over on the pass (don’t try this at home kids). There were only 2 exits until the exit for the main UCLA hospital, each a couple of miles apart. If I got off the freeway there, it would have taken longer for EMS to get to me. Traffic was moving on the freeway, so I tried to get as close to the hospital as I could before I pulled over. I got off the freeway, and of course, still no where to pull over. I ended up having to use the EpiPen at a red light. I finally found a place to pull over, but by then, I was 0.25 miles away from the hospital, so it was faster for me to just keep going. I had a friend on the phone who knew my location the entire time in case something happened.
 The entire drive was absolutely terrifying to say the least, but I was so thankful (reason #4) that I got to the hospital safely, and that things didn’t hit the fan until after I got there. I tried to wait a few minutes in my car in the parking lot, trying to convince myself that I didn’t need to go into the ER, but things were worsening, so I went in. I’m glad I eventually did because even though they didn’t even triage me before pushing me back to the trauma bay, my oxygen saturation was in the 80s while my heart rate was around 150. They immediately gave me additional epinephrine, fluids, medications, etc. A cousin came to sit with me which was much appreciated, because it was scary to be going through the ER with the trauma I experienced at that hospital the last time while literally watching my home town burn on live TV.

What I was watching on TV...

This reaction was stubborn—I ended up getting a total of four or five doses of epinephrine, which landed me back in the MICU. They mixed an epinephrine drip to have on standby, but thankfully (reason #5) they didn’t have to use it. This hospitalization was a lot better than my previous ones there. It COULD have been related to the complaint letter that I wrote and received the response/investigation findings from the day before I was re-admitted. Regardless, I was glad that this experience was slightly more positive given how much stress was involved both in the hospital and with the wildfires and the shooting all on the same day.

Meanwhile, my family evacuated, and had to re-evacuate 2 more times, as each place they were evacuating to was evacuated as the mandatory orders spread with the Woolsey fire. They returned home on Saturday evening. Thankfully (reason #6), our house was totally fine, which was a HUGE relief. With the whole idea of giving thanks/thanksgiving, seeing the devastation from the shooting and the fires all around our area has been sobering. The damage everywhere is extensive, and although the fires are gone, the smell of smoke is still strong at times. We are lucky that we have our home to seek refuge in, but hundreds of families weren’t that lucky, made worse by the fact that this all happened right before the holiday season.
 I was discharged late the next Monday evening (11/12), because we had to wait for the reaction to calm down, the air to clear up a bit, and I ended up developing a UTI that was causing some kidney pain while I was there. I was home in ample time for Thanksgiving, and I have been able to return to work twice since that admission (thing to be thankful for #6).
 Despite the immense amount of stress and chaos Thousand Oaks has had over the last couple of weeks, things seem to be returning to status quo. All schools re-open tomorrow for the first time in about 2 and a half weeks (my brother is NOT excited). Roads are re-opened, and most people have returned to work. The signs (picture to the right with mention of the Borderline 12, a reference to those who passed in the shooting, are no longer on all of the major thoroughfares. As I said earlier but will say again because of the gravity of the situation—I am THANKFUL that our family is able to return to our status quo.

 In terms of what I’m up to, things are still pretty up in the air. I had a consultation with a hematologist who specializes in MCAS in Orange County a few days before the chaos. She agreed that I likely have a hereditary angioedema (swelling) or secondary angioedema component to my symptoms. The angioedema is usually what keeps me in the hospital since it has the potential to block my airway. I was started on a medication for hereditary angioedema just to see if it makes a difference, even though we aren’t confident that my angioedema is specifically hereditary. My insurance has not approved the medication, but the manufacturer covers the first month.
 Because of the additional hospitalization, the hematologist and my primary mast cell physician told me that they feel it is now time for me to start plasmapheresis, which is a treatment in which the blood is filtered to remove auto-antibodies. Unfortunately, this would dramatically change my routine, as it starts off at 4-6 hours 5 days a week, and no facilities close to home are properly equipped. I am waiting to hear about what the logistics of this will be, and then I’ll post an update explaining more. In the meantime, I had the first dose of the angioedema medication, and am trying a liquid iron supplement to see if I can absorb it in hopes of avoiding more blood and/or iron transfusions in the future. I also am supposed to go back to Mayo for a follow up in December to see if they have any additional suggestions. I also need to make a decision about graduate school somewhat soon-ish, so I’m working on looking into my options and access to accommodations to see what is feasible. I am back on IV antibiotics now because this UTI doesn't want to go away, and is still causing some kidney pain. This week I also have follow ups in San Diego, which should be relatively uneventful.

 In summary—I have a LOT to be thankful for. In addition to the reasons explained above, I can think of countless more—having a 15 year old lab who made it through the evacuations (heck, the fact that she’s still living it up is a miracle in itself), to have the financial means to access healthcare and live comfortably, a house that is still standing, to have access to food, water, shelter, supportive family, some of the top medical experts in country (with some exceptions :P), etc. The list could go on and on. I have very many long and treacherous journeys ahead, but I knowing that I have a support system means the world to me. Happy belated Thanksgiving everyone!

PS- If you have not already, PLEASE sign this petition here! There is current a national IV Benadryl shortage which not only threatens my access to this life saving medication (I receive a 24/7 infusion of it) and others with MCAS, but also many others using it as a pre med for chemotherapy, treatment for allergic reactions, etc. It takes just a minute, and every response helps! There even is a video about the shortage featuring yours truly :)  Petition Link

 Video about the Dipenhydramine Shortage

Signs for first responders on the entry sign to our neighborhood.

View from our house the morning after I came home.

Escape Plan Initiated

Finally I get to report that I should be on my way home this evening! Thank you again for all of you who have reached out, come to visit, dropped a note, it means a lot to me!

Part of the "weight gain" care package from my friend Molly (and this wasn't even half!).

 We were able to lower the IV steroids a hair more last night without any major episodes, and most of today was spent going back and forth between the pharmacy, home health/nursing agency, regular outpatient pharmacy, and my outpatient team to orchestrate everything. My situation is far from typical in terms of complexity and discharge, but we all can agree that virtually living in the hospital is not a very solid quality of life, nor would really change much long term. I'm incredibly thankful and lucky to have a support system at home to help me through this.

My cousin Maya drew this page free-handed for me to color!

Assuming everything falls into place, the pharmacy is delivering the TPN (IV nutrition) and other medications to my house later this evening, which my step mom will bring to the hospital, connect me to, and then head home. The new home health agency is supposed to come tomorrow to do a dressing change on my PICC (IV line), and make sure that I'm confident in preparing medications. including administering and preparing the Methotrexate injections. I have labs and follow ups with my primary care physician on Monday, and I also need to follow up to see if switching my port is still an option, since ports typically have a lower infection risk than the PICC line (and mine already seems to have some issues with blood return). I have follow ups in San Diego at the end of the month with allergy/immunology and cardiology. The hospital dietician also came by last night to confirm that the current plan is to still get as much of my nutrition as humanly possible by mouth, and also keep me on the TPN, most likely for a couple of months, until my body weight is up. After that, we work on weening off of it, or at least reducing the frequency. The cocktail that constitutes the TPN is regularly adjusted by my doctor and the pharmacist based on my blood tests.

(Warning- paragraph only for those of you interested in the nitty-gritty logistics, otherwise, jump to next paragraph). The Benadryl is the same as it has been before-- I change the bag of medication and tubing that is connected to me daily, and that is attached 24/7, shower, sleeping and all. For Pepcid and the IV steroids, I draw them up into syringes ahead of time, and they have to stay refrigerated-- the Pepcid being twice a day, steroids three times a day (while also titrating the dose down and keeping track of those numbers). The TPN runs for 14/24 hours of the day. Before I can start that, I have to add vitamins and folic acid to the mixture, which ends up being a pretty massive bag. While the TPN is running, I'm carrying the TPN itself, a pump, plus the Benadryl and another pump (which ends up being a solid portion of my entire body weight).

Very excited to ditch this view and the never ending wire tangle.

When I initially started the continuous diphenhydramine/Benadryl infusion (CDI) last May, I wrote a lot about a new normal, adjusting to being connected to the pump constantly, and so many new (and scary) considerations. I certainly am feeling that way-- it is pretty overwhelming and scary to have to track and care for everything. I know I'll get through it, just as I did before, but at the moment, I'll let myself go through the anxiety-- and being at HOME will help with that too!

Well, that was fast--Tough Decisions.

Usually I can come up with some clever introduction to my blog posts, but for this one, I'm kind of at a loss. After my last blog post, I was discharged Saturday afternoon with the IV steroids to be able to continue the steroid taper from the comfort of home, and eventually gradually switch to oral/liquid steroids while also trying to get my weight back up to a healthy level.

Yesterday I was going to a follow up appointment with my primary care doctor, and prior to leaving, I started experiencing the same weird feeling in my chest/arrythmia that I have been feeling intermittently. It came and went, but it was enough to make more really dizzy, nauseous, and short of breath. I got to my doctor's office, and at that point, it seemed to fuel some sort of mast cell reaction. They called 911, and I was back off to the hospital.

When I got here, they gave me the usual anaphylaxis protocol, and also took blood work. Those labs indicated what we already knew and had been seeing in my labs for weeks, severe malnourishment and failure to absorb medications and nutrients. They admitted me back to the ICU Stepdown Unit/PCU Unit that I had been on for the latter part of my last admission, and gave me IV electrolytes overnight.

After speaking with the team here and nutritionists, they decided to start me on TPN, or Total Parenteral Nutrition (LINK). TPN is a cocktail of vitamins, minerals, lipids, fats, etc. that provide complete nutrition via a central line, like the PICC that was placed last week or my port. It takes the GI tract out of the equation in terms of what is getting absorbed, since it bypasses the GI tract entirely, which is why they elected for TPN instead of a nasal or surgical feeding tube. It runs for 12-14 hours a day and provides an entire day's worth of calories and nutrition. While inpatient, they take labs daily, and build a "cocktail" based upon whichever nutritional deficits they are seeing. On an outpatient basis, these labs are usually once a week.

In theory and in the short term, TPN is literally life saving. However, the long term risk profile, risk of complications, and impact on quality of life can be challenging. The current plan is to use TPN for a week + to get my weight up out of the danger zone, and provide a buffer. We suspect that at this point, the autoimmune process that has been ravaging my system is partially fueled by the fact that my body is trying to attack tissues for energy sources. Once we have gotten me out of the danger zone, then we will work on getting me off TPN as soon as humanly possible.

In the mean time, I am supposed to eat as much and as frequently as possible to make sure that my GI tract doesn't take an even more extended hiatus than it already has. I am trying to nibble throughout the day, use supplements like Ensure, etc, again to try to avoid TPN complications and hopefully need it as minimally as possible.

That being said, I was supposed to move into graduate housing at the end of the month to begin my MSW program. In light of recent events, the shift in what our plan going forward is, and the timing of everything, I had to make the extraordinarily difficult decision to defer enrollment in my Master's program for a year.

To be entirely honest, I'm pretty heartbroken. I know grad school will wait for me, and that I need to be focusing on my health, but as I mentioned in my last post, I'm naturally frustrated. I am confident in my team's ability to manage things and to anything and everything necessary to get me back up to speed as soon as possible. I'm also scared of TPN complications, but I know that at this point, I don't have any other choices. While I'm here, we also are going to continue to ween down on the steroids whenever possible while trying to also avoid any more major mast cell episodes.

Once I'm discharged, depending on where we are at with TPN, I"ll either get my port swapped to a double lumen (2 part), or a line called a Hickman, which is similar to the PICC line that they placed in my arm, but in my chest. For TPN, it sometimes is less of an infection risk to use a PICC or Hickman in comparison to a port. My educated guess is that I'll be here at least a few days to a week, but it seems to depend on whether my mast cells cooperate with the agenda. In the mean time, I'm working on snacking, tutoring, coloring, and whatever else is distracting and minimally stressful. b

I also feel the need to apologize for the "Debby Downer" kind of post, but for right now, I think writing everything out is helpful for processing. I hope to have a more positive update soon after they start the TPN overnight.

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.

!

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!

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.