IVIG Day #2, TPN Day #4

Thanks again for everyone's well wishes and support over the last couple of days! It certainly has felt like a bit of a time warp, which I guess is kind of to be expected when you're in the same room for a while. Since my last post, I had my first three days of Total Parenteral Nutrition (TPN), and two days of IVIG (intravenous immunoglobulin).

For those of you who have been following my story for a while, I have been receiving IVIG monthly, and then bi-weekly since November. My first admission of the past couple of weeks occurred after an adverse reaction to my standard IVIG infusion. IVIG has helped immensely, so we were not ready to give that up unless there was really persuasive evidence that I could no longer tolerate IVIG. To test that, we have been doing 1/3 of my usual IVIG dose each day, with the third and final day tomorrow. With the high dose IV steroids I have been receiving for almost 2 weeks, these infusions went smoother, which overall is a good sign. I still react to the infusions, but have responded well to the meds to treat the reaction symptoms.

Awesome surprises!

The first 24 hours on the TPN was kind of rough. I felt even more run down/beat up than usual, almost as if I had the flu, and some reaction symptoms. My body seems to have adjusted well to it, and now that I'm actually getting the nutrition that I have been so short on for so long, I am already noticing a difference in my strength, energy, and thinking. When I came into the hospital, I could barely walk because I was so weak, and experiencing arrhythmias from low electrolytes, which have now almost entirely resolved.

We are still working my way up to a "full" daily dose of TPN. Because of how malnourished I was, they have to slowly add in nutrition to avoid what is known as Refeeding Syndrome. Refeeding Syndrome occurs when the body is overwhelmed by nutrients if they are introduced too quickly after extended periods of malnutrition, and can cause issues with electrolytes, metabolism, etc. They watch for it closely through daily labs, and adjust the "cocktail" of vitamins, minerals, calories, and electrolytes in the TPN accordingly.

My labs are still showing significant issues with electrolytes, which again, is absolutely no surprise because of the levels I was starting with and the continued auto-immune process impacting my kidneys and gut. In addition to the TPN, I have been getting additional infusions of potassium and phosphorus.

Yellow= TPN, White= Lipids, Clear = Benadryl

I haven't gained weight (supposed to take time, not overnight), and my electrolytes are improved but certainly not resolved, which means that the plan is to continue TPN after I am discharged. I mentioned this in my last post as well, but usually TPN is used for individuals with little to no ability to consume food or use their GI tract. In my case, it is being used as a supplement to get me closer to a healthy weight, maintain electrolytes, and a minimum of 1,000 calories a day of intake. The hope is that over time, we will wean me off the TPN in a few months. I still have concerns of infection, practicality, and the impact on the rest of my organs related to the TPN, but at this point, it's what we need to sustain me in order to even explore other treatment options down the line.

After the final day of IVIG tomorrow, the plan is to over the weekend to slowly start decreasing the IV steroids. I'm still on a higher dose of steroids than I was re-admitted on, so that also is going to take time and patience. Real conversations of discharge haven't started yet (other than confirming that the TPN is sticking around), so realistically speaking, we are looking at mid next week.

For those of you who are curious what goes into TPN. Lipids are a separate bag.

I'm of course still majorly bummed about graduate school and the overall conversations about treatment options and such, but I'm glad we are at the very least seeing progress. My def The team here that is part of the UCLA network has been amazing, compassionate, patient, and realistic about the situation at hand. They have taken the time to listen to us/our concerns, and helped me continue to maintain confidence when I bring about concerns or questions. I am a little irked that nobody was more aggressive about nutritional support up until this point, but there's not much that can be done about it.
In the mean time, the snacking/Netflix/coloring/sticker book/tutoring saga continues. I am SO appreciative of the visitors, messages, gifts, food deliveries, and support over the past few days. It really does help pass the time and keep me occupied. I'm hoping for a very uneventful weekend with the steroid decrease so I can make my jailbreak (a much longer one) next week!

Another reminder that 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!

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.

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!

Operation LA or Bust: Success

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

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

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

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

Good bye and good riddance!

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

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

(Photo Creds to Andrea)

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

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

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

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

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

Celebrating Mother's Day....

Celebrating Serena's birthday..

Reuniting from near and far!

Thankful for the love and support for these awesome deans!

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

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

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

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

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

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

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

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

Delicious looking dinner, am I right?

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

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

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

Decisions Decisions....

I can't believe how quickly the end of my last semester of my undergraduate career is approaching! I also have lots of good news along with it. I am excited to announce that I will be working at Children's Hospital Los Angeles starting at the end of April part time as a Peer Health Coach, where I was a former patient! It is really cool to be able to go back NOT as a patient, to be able to help other patients and make a difference.

I also have heard back from half of the graduate programs I have applied to-- and I got into both! I'll keep the universities I have heard from nameless for now, but I'll give you a hint. They are two major universities in Southern California with a long standing rivalry. I am still waiting to hear back from the last two before I make my final decision, but I think I have my decision made. The two programs that I did hear back from are the most competitive out of the bunch, so it is very encouraging that I got into them both. I am glad that I will be able to stay semi close to home, and I can't believe the progress that I have made from almost a year ago, where I spent most of my time in bed or in the hospital, too sick to do much.

Health wise, things have been going really well. The rest of this post may not seem like it, but I promise, I am really feeling a LOT better. I had another three appointments in San Diego, one about 2 weeks ago, and two at the end of last week. I met with my POTS doctor, a gastroenterologist, and my allergist/immunologist. All of them told me how I look like a different person from a few weeks ago. In my last post, I also mentioned there were some difficulties with my GI system and nutrition. It's still been pretty finicky, but I met with a new GI, who started me on a new medication this week. So far, it seems to be helping, so fingers crossed!

"Moon face" is almost gone!

The IVIG has still been very helpful. As I said to my doctor, "I feel like a new person." I have been having some trouble with having reactions to the infusions themselves, and their side effects, so we are working on trying to get the brand switched. Yes, the brand-- although IVIG is a human blood product, there are multiple "brands," which have different filtration and constitution methods (go donate blood people!). I believe I mentioned it in a previous post, but my body does not make igA, which is the antibodies that line mucosal tracts throughout the body, which contributes to my not-so-fantastic immune system. I have been on a low igA brand, but since I have been having a hard time with it, we are going to try to get my insurance to approve a no-igA formulation, and also add in a small dose of IV steroids before the infusion. Regardless, the IVIG has helped enough so although I have had more reactions and episodes, I still have not been hospitalized, and I am WAY down on my steroid dose. No more moon face! We still have a few more milligrams to go, but we're close. It seems to be relatively agreed upon that I won't ever be able to get completely off steroids, but if we can keep them at a super low dose, that is really great.

Steroids have icky side effects in addition to the "moon face," which is why we have been trying so hard to get me off of them. I had a DEXA (bone density) scan over Spring Break, which did show that I have developed osteoporosis in my spine. Luckily, my hips look good for now, but it is something that will be monitored. I'll be meeting with my endocrinologist again in a little over a week to decide if we want to try any medication for it. I have been having some trouble with dizziness, and "greying out," but only if I am standing up (if I am sitting, it's not an issue). Unfortunately, this is very common with POTS, and luckily, doesn't affect any activities that don't require standing. However, in conjunction with the osteoporosis diagnosis, and preparing for my job/grad school, I am using a wheelchair part time to help increase my stamina in terms of being able to be out and about for longer, and actually allow me to do the strength and physical therapy work. Being able to use it just on bad days or for an hour here and there allows me to save my energy for when I really need it, and to be able to do more than I would if I had to sit down every few minutes. I bought a used chair to use temporarily, but I have evaluations this week for a chair that actually fits me, and is super lightweight to make it easier to get around. We tried taking me off one of my POTS medications, to see if it was making my blood pressure go too low, which totally backfired-- so for now, we're keeping things the same there. I'm not going to lie, I have been very hesitant to proceed with the wheelchair, because of how people respond/react to it, and associated stigma. However, being able to use it when I need it has showed me that it's worth it to prevent any complications, and that those who truly matter see through it.

My trips to San Diego have also been fun because I have gotten to spend time with so many amazing people that I have met online who have similar health situations to me. Although we may have met from having the same or similar diagnoses, we all have so much in common beyond that, and I truly appreciate their friendship and support (and letting me crash with them when I'm in town).

Just a part of the San Diego "crew"!

Checking out the Abilities Expo!

Another fun part of Spring Break was that I drove up to the Bay Area for a last minute trip to surprise my mom, see my old neighbors, and a quick lunch with my grandparents. I caught surprising my mom on video:

Also incredibly thankful to my old neighbors for helping me make that happen! I miss them dearly and love any opportunity to spend time with them. And, being able to see my other cousins when I got back to Claremont was an awesome surprise too:


Once I finalize my grad school decision, I will post it here as well :) I am looking forward to my next set of adventures!

A group of us with POTS at the Claremont Colleges meet for lunch once a week. We Skype in whoever can't come in person, and today's set up was pretty comical :P