Back to Back

Forgive the title of the blog post-- I'm running out of cheesy back related puns :P

Since my last blog post, I had my Disneyland 24 hour mini vacation, which was amazing! It was a welcome break from my back to back appointments, treatments, and such that seem to go on and on. I wasn't able to go on some of my favorite rides, which was disappointing, but I was really pleasantly surprised that there were rides I could safely go on and enjoy. I used my own wheelchair in Downtown Disney, but had a hard time propelling myself, so I rented a scooter to go into California Adventure. It was great to spend time with my friend Brittany and her mom, who live in Seattle, that I rarely get to see, and to hunt down all my favorite Disney food finds. I may or may not have brought home a giant Jack Jack Cookie Nom Nom, on top of a safe Mickey Ice Cream bar, a nut free pasta dish... Disney certainly knows how to do allergy friendly food right.

Disney!

After the fun in Disney, I was quickly back to my back to back appointments and not-so fun stuff routine. I was nervous for my two appointment with the orthopedists because I have been getting some scary muscle spasms in my right leg, plus the back pain, and the finding of the compression fractures in my MRI that I mentioned in my last post. The first appointment did not go well. It seemed like the doctor was trying to be nice, and felt bad that he couldn't explain my pain, but just said that from the one view of my MRI that there were no explanation for my pain, no compression fractures, just some degeneration from my osteoporosis. That would be absolutely lovely if that was the case, but I found it very hard to believe that 2 radiologists, a hospitalists, my primary care doctor, and a neurosurgeon were all wrong about the fractures in my thoracic spine at T11 and T12. I left the appointment upset, not because he told me that there were no fractures, but because I felt completely confused and defeated. I was really upset leaving the appointment, but taking a glass staining class that I received for Hanukkah from my dad and step mom was a good distraction until the appointment the next day.

I actually almost canceled my second opinion appointment because I was so frustrated from the first one. I'm glad I didn't (ha ha get it-- another back to back day of appointments). This doctor took 3-4x the amount of time with us in comparison to the other one. He went through my MRIs vertebrae by vertebrae, and from multiple angles. The doctor the day before only looked at one angle, and only looked at the vertebrae in question. The second doctor pulled up tons of dimensions of images form the MRI and immediately identified and showed us what the fractures at T11 and T12 looked like, and in addition, found a third fracture at T6. The fracture at T6 is considered to be an "acute" fracture, as it still has fluid around the fracture. Neither radiologist caught it, but even my dad and I were able to very clearly see it once the doctor scrolled through the MRI.

It may seem silly to be happy that there is a third compression fracture, and a more noticeable one, but in my mind, I felt so relieved that there was now a very clear explanation for my pain. It explains why my pain is so severe (because it's a newer fracture), where my pain is, and also gives us hope that once I am out of the "acute" phase, the pain will dissipate, which should take about 8-12 weeks. In the mean time, I am keeping up with heat, IV tylenol, a numbing gel, and I was able to start physical therapy today. He was hopeful that the new injected osteoporosis medication I am on should help prevent my osteoporosis from progressing, and that he has seen really fantastic results from this particular medication in other patients. For now, I have enough room between the fractures and my spinal cord. However, I have to be VERY careful to avoid future injury. He also believes that the scary leg spasms are electrolyte related, so hopefully supplementing those will prevent any future spasms.

Having a third fracture also adds more evidence to our existing concern that the steroids are absolutely destroying my body. My steroid dose has been decreasing over time, which the Rituxan has helped with, but they don't feel like it is decreasing fast enough. In fact, the Rituxan has been making a HUGE difference-- I have been having a lot fewer angioedema episodes, and my steroids are the lowest they have been in a while. However, to continue to decrease the steroids (and to decrease them faster), they decided to switch my Rituxan to a more "nuclear" one, which is more similar to the protocol they use to treat cancer. This means that I am going to have 2 8 hour infusions a week apart to completely nuke my immune system. The first one is this upcoming Friday. I'm a little nervous for the infusion, because of the side effects, risk of infusion reaction, and the consequences of being very immune compromised, but I know these are all risk that have to be taken if I want to avoid further rapid progression. Thankfully, CHLA was able to make an exception to allow me to do these infusions there in case there are adverse reactions or if the speed of the infusion needs to be slowed down.

Until Friday, I have been working on starting up a local chapter of Sick Chicks, which is a non-profit that is focused on empowerment for young ill and/or disabled women (Sick Chicks Website), tutoring, and baking. My mom also was in town for 24 hours, which was a blast-- we were able to go to some of my favorite restaurants, shop in a warehouse of a designer I like, and hang out. I'm looking forward to seeing the final result from the glass class I took last week. I'll make sure to post a picture once it has been fired in the kiln!

A New Form of Patient Insight and Fighting Against a Broken Immune System

Oh boy-- the daunting task of attempting to describe was has transpired over the last few months....  A good way to sum it up is two step forwards, one step back, a lot of frustration, and navigating a broken healthcare system. A few people have reached out to ask why I haven't written a post in a while, and to be honest, I haven't simply because there are so many questions, and frustrations that accompany a lack of answers. That does not mean, however, that things have been all bad-- we have made some progress, and I'm hopeful that we are starting to go on the right track.

 For those of you who are friends with me on Facebook, you may have seen that I was hospitalized in the Pediatric Intensive Care Unit (PICU) at CHLA not once, but twice. And for how I ended up there-- I'm too old to be a CHLA patient, but I do work there one day a week at a Family Resource Coach (actually in the PICU too). The UTI that I mentioned in November that I had 2 recurrences of came back the first week of December, only a few days after finishing the second course of IV antibiotics. I had been in a flare for a few days, which I later found out was because of another recurrence of the infection, and had a few really frightening swelling attacks that was not responding to medication. I was at our department Holiday Lunch, and started swelling (no, it was not from the food, my body was just already in "fight mode." I told my boss that I may need to call into a meeting we had scheduled later that day, and when she saw the swelling in my face, she immediately took me to the ER.

Even though it was just down the hall, by the time I got there, I was a mess. I received upwards of 5-6 doses of epinephrine, starting an epi drip, steroids, additional benadryl, and breathing treatments, and was still in respiratory distress. Because CHLA has inpatient/in house allergy, an allergist was at the ER within 5-10 minutes of my arrival, which was really really helpful. She was able to see exactly what happens during an attack, and my medication response. My specialists outpatient have seen pictures, reports, talked to ER doctors, etc, but never have seen my worst attacks. The swelling in my tongue was severe, and the ER doctor didn't think that she could intubate me because of it (placing a tube in the throat to take over breathing), so she called anesthesiology and ENT. They told me that they were prepping a OR because they were thinking they were going to have to intubate, and if they couldn't get the intubation, to place a tracheostomy. They had me sign consent and all-- it was petrifying. The ENT placed a scope through my nose to look in my throat to see if there was an obstruction in my throat or if it was primarily in my upper airway. Thankfully, the swelling was all in my mouth and upper airway, so they did not have to take me to the OR, nor intubate me. The combination of the epi drip and epinephrine shots started to kick in, so they moved me to the PICU.

The allergist who was in the ER with me was fantastic, and was able to take care of me throughout my stay, and consulted with my outpatient team since she did witness everything. There was a lot of difficulty at first weening me off the epinephrine drip. After I was weened, they kept me on the step down unit for a while to reduce my steroid dose as fast as possible, because I am having so many complications from the steroids (osteoporosis, scoliosis, cataracts, you name it).  I also completed an additional antibiotic dose (and meet Carly Rae Jepsen at the same time too :P) I spent almost all of Hanukkah in the hospital, but had my parents bring in an electric menorah, and I converted a plastic Christmas tree that a non profit organization distributed into a "Hanukkah bush." .Click here for a cool video of what the LAPD did for the Holidays.

The Hanukkah Bush

When I got home, I was ok for a few days, but still struggling. I started having daily attacks again that weren't responding well to meds. We called the on call CHLA allergist, who told me to come back into the ER (an age exception was made because I was just discharged a few days prior). We did a mad dash to the CHLA ER, which is an hour and a half away, and made it just in time. By the time we got there, I was in full blown anaphylaxis again, with severe angioedema (swelling). My blood pressure was something like 86/65, and I was placed back on an epinephrine drip.

Sure enough, the infection was back, again.  I was moved from the PICU to a stepdown unit after a few days. They started more aggressive antibiotics, and I completed another course in the hospital. We began discussing what treatment options are still available because I've exhausted so many, and obviously what we were doing wasn't working. The allergy team at CHLA spoke with my outpatient team, and were deciding between plasmaphrereis, a more invasive procedure similar to dialysis which I mentioned in my last post, and Rituxan, which is a pretty nuclear immunosuppressant that is used to treat certain cancers and severe cases of autoimmune disease. They ultimately decided on Rituxan because of the invasive nature of plasmapheresis with minimal data to support it, and the hope to preserve my quality of life as much as possible.

What happens when you spend Christmas in a Children's Hospital...

Once the antibiotics were done, they moved me to the Bone Marrow Transplant unit to receive my Rituxan infusion, because the PICU was full, and the BMT unit is the unit that uses it the most. Rituxan is notorious for causing infusion reactions in a lot of people, even those who are not prone to reactions in any way. Infusion reaction and over "nuking" my immune system were the biggest risks/concerns. Its an incredibly fragile balance between immune suppression to prevent the autoimmune issues from progressing and avoiding infections. I received the dose on the BMT unit, and thankfully, had no major issues.

On the day of discharge, New Year's Eve, the UTI symptoms returned again. I asked them to do a repeat culture, and then they could call me if it was positive. They reluctantly agreed. 3 days later, on 1/2, I got the call that those cultures were positive-- again. Now the concern was escalated because I had just received a really potent immunosuppressant drug, in addition to the fact that I was already pretty immune compromised.

I started another two week course of IV antibiotics at home. I was still having pretty severe kidney pain, and we didn't know why the infection keeps coming back. My primary care doctor had me get a renal ultrasound. During the ultrasound, the tech was like, "well, I see why you're in pain." The pain from them pushing the ultrasound probe was so bad I literally had to use an EpiPen mid ultrasound because I was reacting to the pain. She said that I had 6 kidney stones, including one I was currently passing. I recieved a call from my doctor the next day confirming this. I was having pain, but not what I would expect with kidney stones.

They referred me to Urology, who said I would need to have surgery to both blast and physically remove the stones, because one was larger than 8 mm, in addition to one or two stones that were around 5 mm. She had me get a CT to confirm stone location prior to surgery. I got the CT, and got an email the next morning-- no stones. Half of the doctors I have spoken to who have seen the ultrasound photos have said that I absolutely had stones, and passed them, while the other half said that what they measured on the imaging was shadows. Regardless, there are no stones there now, but I am retaining some fluid in my kidneys, which could be causing some of my discomfort.

I was so confused and frustrated. Of course, I was thrilled to not have kidney stones nor need surgery, but at least having kidney stones would explain both my pain and why the infection kept coming back. I was told my repeat urine culture was clean, so I stopped the oral antibiotics the urologist gave me to take for a week to ensure the infection was gone. The urologist never personally called me to explain why the ultrasound was misread, or how the stones passed with pain, but not excruitiating pain. Thus, I never was told to continue the antibiotics.

After only 2 days off antibiotics, the infection was back, again. I was so frustrated that nobody from the urologist's office had followed through. My doctor even called their office, to see what they suggested in regard to the infection coming back again, and they didn't even respond to my doctor. The oral antibiotics were not absorbing, which I told them was a concern, but nobody listened. My doctor was waiting to start IV antibiotics until they heard from Urology.

I called my doctor because by day 3, I felt awful. I was weak, nauseous, had an insanely painful headache, and literally crying in a ball on the couch in pain. I don't know how to describe it beyond that, other than the fact I literally felt like I was dying (I know it sounds melodramatic, but that's how bad I felt). He said to go to the local ER for blood cultures, and that he would call ahead so they didn't panic.

I got to the ER, and per protocol, they called "Code Sepsis," which basically means that you are seen immediately, get an immediate chest x ray, EKG, and blood cultures. They were expecting me already. The doctor at the local ER was fantastic. Unfortunately, the local hospital is not able to handle my allergic issues/angioedema, simply because they aren't adequately equipped, but they were able to treat an infection.

The doctor came in and said that my lactic acid was really high, causing acidosis, where the blood literally turns acidic, and is one of the most telltale indicators of sepsis. That explained why I felt so sick. I was admitted to the Cardiac ICU (where they had a bed) to start aggressive antibiotics and fluids. Initially, I was told that it was urosepsis, but later, different doctors said different things on whether this episode was actually sepsis, or just a severe kidney infection and UTI. Regardless, I was on antibiotics yet again. In the hospital, they gave me a small dose of IVIG (Intravenous Immune Globulin) divided over three days to try to give me some immune system to fight the infection on top of antibiotics. I used to be on IVIG for about a year, which was helpful-- it has the antibodies from thousands of blood donors in one dose to help build an immune system. I had to stop it because it was causing swelling and reactions. This admission, by dividing it up over three days, giving me a ton of pre-medication, and insanely slowly, they were able to give me one dose. However, it wouldn't be sustainable to do that regimen outpatient.

I'll finish up that round of antibiotics in 2 days. I already did a culture Friday to see if the infection is still there. Because of the infection, I haven't been able to receive the next dose of Rituxan although I'm long overdue. I also saw an angioedema specialist since my previous 2 admissions, who said that my bloodwork is indicative that I have autoimmune acquired angioedema, which is extremely extremely rare (even more so Than the other rare conditions I have). There also are little to no cases documented of individuals who have both MCAS and the autoimmune acquired angioedema as I do. I was placed on two new angioedema meds, which I don't think are really doing anything, but at least aren't hurting.

Because of this cluster, CHLA allergy can make an age exception to continue to see and follow me under the premise of a rare condition. They are working on spearheading the Rituxan, and starting SCIG, which is a different form of IVIG under the skin that they hope that I'll react to less. However, they are limited because I'm too old for any of the other specialities or auxiliary services there, including being transferred there in an episode. The local hospital isn't well equipped to handle angioedema, and usually transfers me out, but UCLA, the other option, has been an absolutely nightmare. That basically means we have to mad dash to CHLA when Im in a swelling episode.

I have had follow ups since these admissions back at the Mayo Clinic in Arizona, and San Diego. Everyone is very much in support of continuing the Rituxan once the infection is gone, and staying SCIG. Since the infection seems to have been fueling the angioedema, we hope that once the infection is gone and stay away, that the angioedema may calm down. We still aren't sure why the infection keeps returning other than the fact that I have little to no immune system right now.

So, as you can see, there has been a LOT of back and forth, which has required extensive navigation efforts, and caused an immense amount of frustration. I've been trying really hard to keep a positive attitude about it, but it is really frustrating when I have been telling providers that there's an issue, or that there's a potential issue, and I'm blown off, or told to "watch and wait." Clearly, the "watch and wait" has been costly. They literally have been waiting till I'm in really critical condition before someone steps in, which has been traumatic not only for myself, but also for my family.

I thankfully was able to work one day last week, and it was great to be back on the "other side" of things. I have continued my online tutoring, and I've also been doing some online health literacy material review for CHLA, since that is a specialty of mine, to keep busy. Having these experiences as a patient at CHLA have provided me with new ideas and insights into programming. I've also been doing some "diamond art" to keep myself busy. If the cultures from last week come back clean, I should be able to get the next dose of Rituxan soon if insurance approval works out.

I've also been able to have some non health related fun, which has been a very very welcome break. A couple of weeks ago, I got to go to a Kelly Clarkson concert with my step mom, which was absolutely amazing. This past weekend, I stayed with a friend who also has MCAS/POTS/etc, and we went to a Gluten Free/Allergy Friendly Food Expo, which we both really enjoyed. I got to spend some quality time with my aunt and grandmother while I was in Arizona for my appointments, and met someone in person with similar struggles who I have been talking to online for a while, but never met face to face.

Over the next few weeks, I'm hoping to see continued progress, improvement, hopefully clean cultures, and getting back into the groove at work. I'll work on making my next post not as long and not as overdue!

Meeting up with online friends!

Checking out the Gluten Free/Allergy Friendly Expo

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.

Hickman is In

Good evening! Quick update-- I had the Hickman catheter placement procedure this morning under general anesthesia to manage any complications in case they arose. Thankfully, no complications arose during the procedure, and they successfully placed the Hickman in my left upper chest! It's a little hard to describe, so I stole this fancy graphic from Google for a visual.

Coming out of the procedure, I did experience more pain than I had anticipated. My neck and shoulder were extremely sore and stiff both along the incision and up my neck, so as the anesthetics wore off, I was a very unhappy camper. Getting upset and pain both trigger mast cell reactions, so I did have a minor reaction, but thankfully, it responded to Benadryl. They were able to give me Tylenol, heat/ice packs and a one time very very small dose of pain medication, which helped (although I was super frustrated that it took 3 hours for even that to happen). Tylenol and a heat pack seem to be doing the trick for now. 

I am really excited that the plan is to go home tomorrow! I am still a little loopy and weak from today, but I am confident that getting some sleep will help. I was supposed to have my next round of IVIG Thursday, but my outpatient doctor decided that to be safe, we should wait till next week so I have more time to recuperate. I'll post an update from home later this week, and thanks again for everyone's well wishes! <3

No Infection! But Still Stuck

Good news-- there is no infection in my PICC line! This means that a) IV antibiotics were able to be stopped b) no concerns of sepsis and c) they were able to resume my TPN (IV nutrition). Although the PICC is operational and useable, now that we know that there is no infection, it still is really poorly located, and still has not fully healed. As a result, we are planning on proceeding as planned to place a Hickman line in my chest, and remove the PICC.

Originally, we planned for that procedure to happen today. However, I have continued to have swelling, and one particularly bad episode, so the team decide that they want to use general anesthesia (knock me out) instead of local anesthesia like they usually do for the procedure. This gives them control over my airway in case I react to anything during surgery. That is scheduled for 8 AM tomorrow morning, so fingers crossed that it will be smooth sailing, and then I would go home mid week.

The other part of the procedure plan that was slightly changed was that they are no longer planning on removing my port tomorrow. Since the port is fully operational, gives blood back, etc, they decided that they would keep it, but de-access it (no needle), as I have been doing since I got the PICC. This means that tomorrow's procedure will be slightly less invasive than planned, and provides access in the event of an emergency where the Hickman is not working, or if infection concerns arise. Once I am able to get off TPN, they can remove the Hickman, and I still have the port without having to go through another surgery.  I am still a little uneasy about having 2 central lines, even though one is not accessed, but having the port resting under the skin as backup only isn't a terrible idea since it is functional.

Yesterday, we did the weekly Methotrexate (low dose chemo) shot, and started TPN late last night. For today, we are waiting on the dietician to refine the TPN regimen. Since I have been here, I am continuing to have issues with losing electrolytes, so we may need to tweak the "cocktail" that goes into my TPN. I'm glad that we were able to resume it, because I really noticed a difference not being on it (which I honestly didn't anticipate). We are also keeping anybody wearing fragrances far away from my room to avoid another mishap :P I'll post an update when I have one!

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!

The Waiting Game

Although I would LOVE to say that I am back at home catching up on sleep, I am stuck in the ever so familiar holding pattern- the waiting game. Since my last post, I was able to tolerate the final day of of IVIG, which we were hoping would provide enough of a boost to see an improvement in my symptoms, and as always, to decrease the ever-so hated steroids. Each round of IVIG doesn't necessarily make a difference independently, which was true in this scenario. High dose IV steroids have now been building up for almost two weeks, which should mean that we able to decrease the dose slowly- yet, again, my body doesn't seem to be a fan of the agenda.

The IV steroids work. But that's also the problem. Although they help reduce my symptoms, reduce the severity and frequency of reactions, there are countless side and secondary effects that make them dangerous long term. I have already developed osteoporosis from them, and long term use increases the risk for metabolic issues, diabetes, advanced bone degeneration, and a whole host of other issues. 

To try to make up the "gap" that the IV steroids fill, I have been on multiple immunosuppressants for a few years. Now that we know for a fact that my gut absorption is close to nada, we discontinued two of my immunosuppressants. Instead, we have now added Methotrexate, which is another immunosuppressant and chemotherapy medication. Although its technically a chemo, I am on a low dose, and side effects are supposed to be minimal, and primarily related to mouth sores, hair loss, and issues with blood counts. It is an injection that I will receive once a week.

I have received one dose of the new medication, but unfortunately, even if it is helpful (which we have no guarantee of), it can take 3-4 weeks plus to see a difference. In addition, like the other immunosuppressants I have taken, it is "broad spectrum," meaning that it impacts my entire immune system, but may not be specific enough to address the particular autoimmune process that is happening for me. I'm hoping that over time, as that does builds up, and because it is an injection instead of an oral medication, that it can help with the steroid reduction.

So, for now, we wait. I still feel pretty guilty being a "negative Nelly," but reasonably, I'm frustrated. We're all frustrated. The team here has been amazing, and looking into a variety of treatment options, research, etc. We know what's happening, we know the treatment options, but there just isn't a whole lot of targeted therapies that we can try and apply. It is just going to take time for things to mellow out, and to slowly decrease the steroids. Originally, the game plan was to have me out today or tomorrow, but now it is looking like I would be going home later this week if things go ok. I've burned through quite a few coloring and sticker books to avoid going stir crazy from not leaving the unit in more than a week :P There have been some more canine and human visitors which also helps the time go by :)

On the bright side, having nutrition, vitamins and proper electrolyte levels through the TPN has made a major difference, even though I'm not thrilled about going home on it. I am working on trying to eat as much as I can in addition to the TPN to help keep my gut somewhat functional. My electrolytes are finally starting to stabilize, and I'm not having  any more of the weird cardiac episodes. The PICC line in my arm that I am receiving meds through is being finicky, but we are trying to preserve it for as long as possible. I suppose "counting my blessings" is right in this context, that I have the ability to go home with support like TPN so I can avoid living in the hospital. I'm hoping my next post will be one heading home!

Puppies do Make Everything Better

Well, maybe not everything, but they certainly are a fun change of pace! I had a really rough morning with some weird cardiac symptoms, but I saw three therapy dogs pass my room and it totally cheered me up (not that human visitors are not awesome too, shout out thanks for the visits). The highlight-- the dog in this picture''s name is Epi, after epinephrine. The volunteer asked if I knew what that was- I responded with, "that's why I'm here!" Too perfect of a coincidence.

A health update from my last post-- I was moved from the ICU to the Progressive Care Unit (PCU/ICU stepdown) Tuesday evening. It's nice to finally have a room with an actual toilet, shower, and slightly more room, etc., especially since this admission has unfortunately been longer than anticipated. It can be a little logistically challenging because when I need emergency medications, I need them then and there, but we seem to have refined it to a system.

Despite the IV steroids, the addition of another oral immunosuppressant, and additional Benadryl, I am still having episodes of angioedema (swelling) around my lips, cheeks, and tongue. Thankfully I have only had one episode since moving out of the ICU that has required an epi pen, but nevertheless, I'm frustrated that it has been more than a week and things still aren't fully resolving.

I guess I should know by now that my body doesn't play by the rules, but its still disappointing. In light of the difficulty getting off IV steroids, continued issues of malabsorption of both food and medication,  maximize comfort, and decrease infection risk, the team is ok with sending me home with IV steroids and the intention of gradually lowering those and transitioning to oral steroids, but liquid instead of pills. The IV immune-modulating medication will be added once things are more stable a month or two down the line.

There was one more inpatient dose decrease in steroids this morning. If things go ok this evening and through tomorrow, I should be able to go home tomorrow. The pharmacy has been great (as always) and is supposed to meet me at home with my supplies. We had a hiccup this afternoon with home health nursing. I have not always seen eye to eye with the nursing agency since I moved back home, but today, where they were argumentative, asking for cash pay despite insurance coverage, and overall creating additional unnecessary hurtles. This agency is totally independent of the pharmacy, and the pharmacy has their own nursing in addition to contracted agencies, so it shouldn't be any issue, but nevertheless seems like a pointless speed bump.

Once I get out of here, I'll be able to have a better gage of my plans for the near future. In the very immediate future, the plan is to continue the medications at home, the new oral medication, the new IV medication (Rituxan) down the road, another attempt at IVIG in a week, and getting my (currently de-accessed) single port switched to a double lumen so the PICC can be removed ASAP.  Current plan is move into graduate housing the last week of August if things stay stable. My new wheelchair should come in about 2 weeks.

In the mean time, I'm occupying myself with online tutoring and orange is the new black, and surrounded by copious amounts of snacks in the attempt to get my weight back up to normal. I haven't been outside in a week now, so fresh air is going to feel amazing. I'm hoping to be able to binge watch Sacha Baron Cohen's new show over the weekend because I heard some positive reviews :P Plus, the ice cream at home is a lot taster than these damn Ensures!


PS-- If you haven't already, please donate to the Denim Dash for Rare Diseases! It is a walk/roll/stroll 5K (or however much you can) for rare diseases such as those that obviously dramatically impact my life. You do NOT have to participate in the Dash to help out. DONATE HERE!

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!

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