Developing Coping Mechanisms

Happy Friday / Shabbat Shalom! I can't believe another week has already gone by. I have slowed down a bit this week, but things finally are starting to feel like they are making sense. I have gotten much more used to the pump, and my anxiety level has come down significantly. I realized that writing things down either on my phone or on a piece of paper (but particularly on paper) was helping reduce anxiety and stress, so I wrote down everything I could think of that was possibly contributing. I felt immediate relief, so I continued the habit, in addition to writing out a daily schedule. That way, I had something to adhere to, and not be adding in additional tasks thinking that I was feeling ok, when in reality, I was just trying to get things done. I have been doing this since Monday or Tuesday, and psychologically have been feeling better. I have been trying a planner for a while, but that was too much pressure and was heavy to carry with the pump, so I switched to just a little spiral notepad that I can even fit in my pump bag. Knock on wood, I haven't had any other pump problems with the shower or changing the bags, things like that, but I know I am still very very new to this all.

Physically, the past few days have been pretty rough. My steroid dose was reduced again, and it looks like it was pulled a little too quickly. The past two days I have been extremely uncomfortable with itching and burning, some throat symptoms, and the return of facial swelling. After playing phone tag with the doctor and the pharmacy on both days, we have adjusted my baseline dose and my bolus dose on the pump (bolus dose is the extra boost I give myself if my symptoms are not relieved). The baseline adjustment didn't seem to help much, so my bolus dose was adjusted today. That seems to actually be helping more, because the swelling is reduced. Additionally, we added back in a couple of milligrams of the steroid to get me through the weekend, and will continue to lower the dose very very slowly. Although I am/was uncomfortable, this is still mild symptoms in comparison to what I was experiencing previously. I have only had to use my inhaler twice since starting the pump, no nebulizer, and no epinephrine, and even with these dose adjustments, I am still taking less Benadryl than I was before.

I had another productive week. Although I didn't have any school work since it is between terms, I was able to take care of some paperwork-esque things, do some more Zentangling, make some IV flip top flowers, and tutor. I have gotten really hooked on the Zentangling, so I have been trying to do that for stress management as well. Some friends are back from school, so I have been able to be a little more social as well. A physical therapist comes to my house twice a week to help me with my stamina and the stairs. Home health is currently twice a week, but will be reduced to once a week. Food still remains a struggle, so I am trying to work that all into my daily schedule, and add in a protein shake and lots of potatoes for potassium. It is weird being on a high salt, high protein, high potassium, medium-high calorie diet, but whatever works.

One of my highlights of the week was that yesterday, I decided that it was a good time to go visit the nurses at the infusion center I used to go to three times a week, the telemetry unit I was on for most of my hospital stay, and the ICU. I was swollen from the steroid change, but needed the distraction. I went on Groupon and got one for 10 dozen donuts- yes, you read that right. For those of you who know me, I can't resist a good deal, and I combined the Groupon with eBates, so I only paid like $35 for 120 donuts. I already had another groupon for 2 dozen from a few months ago, so I figured I could combine them and stock all three units for at least 2 shift changes. I headed over to Krispy Kreme and picked up twelve dozen donuts. They thought I was a little crazy, but when I told them what I was doing, they helped me load up my car. I went to the telemetry unit first, and dropped off the majority of them. The nurses were really excited, and the doctor who started the pump was also there, and started crying. Selfishly, it felt great to see everybody and how happy this made them-- I was doing it of course as a thank you, but I found it really fulfilling too. I went to the ICU next-- I wasn't really able to see more than one or two of the nurses, but I knew they would see the note from me later. The last stop I made was the infusion center, where I also brought some of my IV cap art, because they had collected the most caps for me. They were shocked to see me, because I had abruptly stopped going there once I was admitted, and they had never really heard what had happened. It was fun to catch up with them, and they still had caps collected for me!

I am not sure how long it will take to hit the "magic" number in dose, and it can always change, but I still have enough wiggle room that it can be increased if need be. However, I want to keep it as low as possible to facilitate weening off of the pump later on. In the mean time, we are continuing with the one change at a time method. Many people have suggested different diets, medications, or treatments to me, and although I appreciate the suggestions, right now we are strictly changing one thing at a time so we know what actually works and what doesn't, and right now, it is to get me off of or on a minimal dose of the steroids.

Another question I have been asked is why I am not symptom free with so much Benadryl and medications. There are over 200 mast cell mediators that are known, and more are being discovered regularly. Mast cell mediators are discussed at this link. They are the chemicals produced by mast cells when they are unhappy. Benadryl only treats one, histamine. I take other medications to treat some of the other mediators, like Leukotrienes, but there are not medications available for most mediators. And although histamine is the primary mediator, there are still the other ones at play which aren't treated by these medications, which is what makes mast cell disease so complicated to diagnose and treat-- lab tests also only cover 4 or 5 mediators, and must be handled cautiously, why most mast cell labs come back negative for most people.

I added some additional links to the links page, for anybody who is interested. Also, over the past week, I have seen many people with the same condition as me suffer from abandonment from their family and friends as a result of their diagnosis. I know you all are amazing and patient, but it still is so sad and scary to see. Please, please, show your appreciation of loved ones, and know that when someone gets chronically ill, or worsens, that the best thing that you can do is to reach out and show your support, because so many people distance themselves out of discomfort and fear. When you already don't feel well, and your support system crumbles, it just leads to a vicious downhill cycle. Nobody wants to be sick, and nobody can pray these diseases away, but a combination of medicine, faith, and time can all contribute to the healing process, and this requires other people to do so. I again am so incredibly fortunate that I have my support system which has gone above and beyond to support me, and I hope and pray that you all stick along with me for the ride. 

Coming up, my next class starts on the 30th, and is an online ASL course. I learned the hard way that I do need to apply for accommodations, even for an online class. My 21st birthday is coming up a week from Monday, which feels like it came up really fast. I can't drink, which kind of sucks, but maybe I will order one just so I can say that I can. There is also a family event over the long weekend that I am attending a part of that should be fun.

Oops, I kinda ended on a somber note, but in all seriousness, stick with your loved ones! I hope you all have a great long weekend, and thank you again for all the love and support.

Overdoing It

I am so sorry that I haven't posted in a week! Things have been crazy-- mostly in a good way, but I am exhausted to say the least. I am still getting used to everything, and every day brings something new. It is the small things that are totally different- like using a public bathroom being attached to the pump-- where do I put my bag to where it reaches me, but isn't sitting on the floor? Super random, but it is a small detail that has to be worked out. I owe a lot of gratitude to the online Mast Cell community who has been answering literally 20 questions from me every day about these little things, they aren't things that you can just google!

Mother's Day was a lot of fun, my grandparents and mom came over to celebrate over brunch. I am incredibly lucky to have two amazing mothers, who both get along and allow me to spend the day with both of them together. Of course, it didn't go off without a hitch and panic before hand-- I have been talking about how the shower is a challenge, and I had my first scare right before the brunch. Since then, my dad installed a handheld shower head, which has helped a lot. The paper portion around my port dressing got wet, and I totally panicked, and an antibacterial disk that goes between the needle and my body slipped, adding onto the fun. I texted my nurse in a panic, who reassured me that it was ok, but I was still very on edge when everybody got here. I was able to help out a little bit here and there with cooking and cleaning, and I had my first outing from the house. Other scares of the week include my dressing coming loose, being worried about the premixed bag of IV meds sitting out for too long, the list goes on and on. I have never had such severe anxiety before, but it is improving every day.

By Monday, I was pretty much back to business as usual. Monday itself was a little rough, the home health nurse came and we had some complications changing the needle on my port, and peeling the dressing off was pretty painful for me. We also struggled with the pump itself, but thankfully that was resolved. On the same day, I had the nutritionist and therapy as well, so it was a long day.

I am feeling a million times better physically, but I way overdid it this week. I am paying for it today with some swelling, and trying to get some rest in. I am averaging about 5,000 steps a day, which is close to the amount of activity I was getting while at school. Healthwise, I followed up with my primary care doctor, which was really helpful and a relief to have her in the loop. A physical therapist came to my house to do an evaluation because I lost a lot of strength and muscle mass in the hospital, so I am still struggling with going up and down the stairs. She will be coming twice a week to work with me, and then down to once a week. The home health nurse came out again and I learned how to change the tubing on my pump.

On the school front, the first couple of nights, I was up all night with anxiety about logistics, but I realized that if they were able to set up the pump the first time around in 24 hours, they can do it again when I go to school. I was able to finish up my third out of four online classes that I am taking while I am on leave last night. This week, that required me to do classroom observations, write 4 papers, and take an online final. I was having problems with this professor and accommodating me, so the fact that I have a guaranteed B and likely an A in the course is a miracle. It is amazing what a doctor's note that mentions ADA can do..... My next class starts in 10 days, and I have my textbook ordered, but this time I learned the hard way that I will need to apply for formal accommodations, even though it is an online class.

Socially and responsibility wise, I have been able to go out to dinner with a friend (twice!) and to Target, a store, etc. I haven't been out of the house this much since coming back from school. Heck, I even got my car washed! Connie, whom I met through a mutual friend, is an artist who teaches a meditation/art method called Zentangle. She was kind enough to come to me with a whole starter kit while I was in the hospital, and came back again yesterday to teach me some more. I really enjoy it, and I'm looking forward to practicing it more. I SUCK at drawing and I am not artistically talented, and every time I make one of the tangles, I am really impressed with how they turn out. She is starting to teach classes and stuff too, so if you are interested, here is her link: Just Tangle No, I am not being paid or doing any sort of promotion, she just is an amazing person who has helped me cope through this crazy week!

My favorite Zentangle (so far)

 At the same time as all of this, I have been trying to keep tutoring to make money. My to do list seems to be growing greater and greater, which is very overwhelming, and adds to my already existing anxiety. It is all stupid, small stuff, but it adds up. Birthday wish list to make, thank you notes to write, needing to stop at the post office, transfer notes from a notebook to a smaller notepad, organize the closet, etc. This is at the same time as daily medication bag changes, battery changes on the pump, etc. Add on three meals a day, 3-5 liters of water, physical therapy exercises, and snacks. Never ending stuff to do. But, I have to realize that all of this is actually extremely positive, because it means that I have the energy to do so. I just REALLY need to slow it down. So, if you see me, remind me to slow down! I am going to try to stick to at least weekly updates, but hopefully I will be posting more often, because this is therapeutic for me too.

Getting Adjusted

Any transition is tricky to navigate, but I am happy to report that things are continuing to be moving in the positive direction! I have now been on the CDI at home for 3 days, and I have been driving everyone who I know who is on the CDI NUTS for the entirety of those days, 24/7. I am incredibly appreciative for all of you! Everything is so new, and my questions aren't things you can just look up on Google since this treatment is so rare. I got out of the house for the first time yesterday for a routine doctor's appointment. No problems there, I just don't have my walking/stair climbing stamina back yet.

For those of you curious about the actual challenges themselves: I am still trying to figure out exact dosing, when to give myself an extra "bolus" dose (extra push of Benadryl), how to mix the medication, and change the bags. I had one "oopsie" last night when I was mixing the bags for the weekend, where I ruined a bag and hit my finger, but luckily there was an extra bag to last me through Monday and my finger is totally fine :) This all is a HUGE learning experience, and it will continue to be. Monday we learn how to change the tubing, and the nurse will change my needle and port dressing. I seem to have figured the shower thing out, Glad Press N Seal with some waterproof tape for my peace of mind. I didn't know that I was supposed to stay connected in the shower, so I stick the pump bag outside of the shower, and let the cord go in the door- it is thin enough that the water doesn't come out of the shower. Sleeping, I have gotten used to the cord and the pump noise.

This morning, I was able to watch the Pitzer graduation- congratulations to the Class of 2017! I am excited to be up on that same stage next year :) I have a professor for one of my online classes that is making my life more difficult, but after this class and a course in ASL over the summer, I am still planning on graduating on time, and returning to school in the beginning of August to work in the Summer Housing Office.

I will continue to keep you guys updated through this whole process, and have an awesome rest of your weekend!

Home at Last

I am finally home and back in my own bed! This was my longest and most trying hospitalization-- 14 nights of little to no sleep, poking, prodding, beeping, testing, etc. I feel a LOT better on the CDI physically, but I am physically and mentally exhausted to say the least. Today, the home health nurse and pharmacist came to the hospital to deliver my pump and first round of supplies. They are all super friendly, knowledgeable and supportive, but things are certainly overwhelming. My step mom, Beth, has been amazing through all of this. She is being designated as my primary caregiver beyond what I can do for myself, so she is going through all of the training with me. They sent us home with a big box of supplies, the pump itself, and a bag I wear that holds the pump and medication. In the house, I will carry around the smaller bag, and I have a backpack I can use to carry the pump and use as a purse when I leave the house. The pump itself is pretty small, probably about 4 x 5 inches. I get a continuous lower dose of Benadryl 24/7, which is actually less Benadryl than I was taking before. If I have breakthrough symptoms, I push the button that says "dose," and I can get an extra boost up to every 2 hours. Again, the idea is that I am getting the same amount of Benadryl or less than I was taking before, just at a consistent dose to prevent symptom breakthroughs and decrease fatigue. My steroid dose (oral) will decrease over the next couple of weeks, but in the mean time I look like an oompa loompa with a rounded moon face.

The Pump

Pouch for medication bag

Case for both pump and medication, drawstring backpack/purse in the background. The entire bag is a little larger than a normal fanny pack.

For today, we went over just the pure basics to get me home- what to do if the pump alarms, and how to pause it or start it. Showering was interesting, as the port has to stay dry, and they are having me stay connected in the shower-- supposedly Glad Press N Seal is the way to go to cover my port, and the pump sat in a bag outside of the shower door, connected to me through the door. Tomorrow, the nurse will come back to show us how to mix the bags of medication, and connect it to the bag, which has to be done daily/every day and a half. The medicine comes in vials which need to be added to bags of saline, but can't be done in advance due to the stability of the Benadryl itself. We also need to learn how to change the tubing, batteries, flush the tubes, etc. They have assured us that it will become second nature, but right now, it is hard to follow along, especially with the exhaustion. The nurse will come about once a week to change my port's needle and dressing, as well as run any labs that my doctor needs-- actually saves me trips to the clinic since they can do it all from home. My potassium is still an issue, so we are trying to figure out the best way to keep those levels up. The medication and saline will be delivered to my house, as well as any additional supplies like alcohol wipes, tubing, etc. I was pleasantly surprised with how helpful my insurance company has been through this entire process, they have been taking care of everything- supplies, pharmacy, home health, doctors, etc. Everybody has worked hard for everything to fall in to place, and things seem to be going really smoothly.

Although the next few days are going to be a challenge, I already feel a positive impact from the CDI-- no swelling, itching, and I don't feel as sedated on the pump as I did relying on oral benadryl before. I can tell the difference between the Benadryl fog and just straight up fatigue, and right now, it is a lot of the fatigue. I am having some trouble getting up and down the stairs at home, but I know this is just a matter of lost strength and will come back with time.

Thank you all so much again for your kind wishes, love and support. I will continue to post periodic updates when I am feeling up to it. For now, I am happy to be home, and excited to get some sleep!

SUCCESS!

Finally, good news to report! The CDI seems to be making a HUGE impact so far. For the first time today in 3 months, I woke up with NO swelling in my lips. We have been playing with the doses throughout the day to try to hit the "sweet spot." Regardless, I didn't have any swelling today except for some minor cheek and lip swelling an hour ago, which is a miracle, considering I have been swollen non stop since the routine shot that set me into a tailspin back in March.

Since nothing is airway related, I get to go home tomorrow! At some point tomorrow, the home health management company is going to bring the pump to the hospital, and show my step mom, Beth, and I how to use it, change out the medication, cover my port to shower, and all of the technicalities involved with the CDI. At least once a week, a nurse will come to change the needle in my port, deliver the "cassettes" of medication, and generally check in. Tomorrow will be a learning curve, and an exhausting day, but I am ready to get out of here and work on having a more "normal" life. I am currently waiting to be moved to step down, and hopefully get a good night's sleep. Today I was fortunate enough to be visited by Connie, a Zentangles teacher, and my neighbor, which were a welcome break and much appreciated. Thank you all again for all of your well wishes, let's keep the positive momentum going!

Pulling the Trigger

So, it is official-- I am now on a CDI, or Continuous Dipenhydramine Infusion. Last night, we decided to give oral steroids another try with the increased Gleevec dosage, as I discussed in last night's post. I immediately noticed a difference, but we wanted to hold out on the hope that my body wouldn't notice the switch. Unfortunately, it did (again), and I had an episode at about 5 AM this morning. This one was scary, because in hopes of not having to use injectable epinephrine, we used inhaled epinephrine, IV Benadryl, and another breathing treatment, albuterol. This was a little more than my body was equipped to handle, so I had some chest pain and an excruciating headache. The worst of it resolved itself within about 20 minutes, but it was NOT a pleasant experience.

This is when I officially said that it was time to start the CDI. This constant yo yo of high doses of Benadryl, Epinephrine, and steroids is taking too much of a toll on my body. I can't live in and out of the hospital, and constantly a benadryl zombie. Although you would think that one would be more of a Benadryl zombie on a constant drip, the CDI actually will give me about half of the benadryl I was taking before, allowing me to drive, function, and hopefully dramatically improve my quality of life. To give you an idea of dosing, the target rate we are working up to is somewhere in the neighborhood of 12-15 mg/hour of Benadryl, when at home I was taking around 75 mg every 4 hours, and crashing before the next dose. Now, if I am symptomatic, I will have a button I can press where I can give myself an extra boost if needed, but a much smaller dose, likely 10-20 mg.

It was a rough day. Since my episode at 5 AM, I wasn't really able to go back to sleep. I missed Cody's birthday, the doctor who I had been working with moved rotations, and the doctor who was supposed to take on my case changed their mind. Without the IV steroids I was feeling pretty lethargic and weak. I wasn't really able to tutor, get any work done, or do much art. An art therapist came by, do we colored for a few minutes, but even that wiped me out. I am hoping to get some sleep tonight and have a better day tomorrow.

At about 4:30 today, they moved me back to the ICU to start the drip. I don't actually need to be in the ICU out of medical necessity, but it is hospital protocol since the CDI is so rare. We are very slowly increasing the dose to a therapeutic level, and using additional IV Benadryl in the mean time to bridge that gap. The drip is going to run through my port, which is the implanted IV in my upper chest that was placed in November. Before, it just hung out most of the time, but it will now be accessed (have an IV in it) 24/7. This is the biggest concern with the CDI, because it does our me at risk for an infection. I have to be extraordinarily cautious to not get it wet or dirty in any way, shape or form. I am not going to lie, I am TERRIFIED of sepsis (infection). But, at this point, its again a concern of quality of life. The hope is that once things calm down, we can stop the CDI, and switch back to oral Benadryl only. But first, I want to go back to school in August! Originally, reports had said that nobody has been able to successfully stop the CDI, but there are now reports of people who have been able to stop it successfully. My goal would be to get me back to school, stable, and then work on weaning it off. This is something I will discuss with my mast cell specialist at my appointment in early June.

We are all doing our research since this is new to everybody involved. The pharmacist and doctor here printed out a whole bunch of articles that we are all passing around. Based off of what I am reading, things should really mellow out in the next 24-48 hours as we fine tune the dose. Then, once the steroid is figured out, I can go home! Not sure how long that will take, but I am guessing Wednesday/Thursday. My unsteadiness on my feet has resolved, so now we work to make sure things stay that way, as well as learn home care measures, and they also would like me to gain some weight and increase protein intake to ensure my body has what it needs to maximize the benefits of my medication.

This link is from a blog written by another person with MCAS, EDS and POTS, Cheyanne, who has been on the CDI since September 2015. She does an amazing job explaining the CDI and how it works. I am also happy to share the more scientific articles as well, just let me know and I can send them over email.

Therefore, I am cautiously optimistic about the CDI. I am confident it will help, but I am really scared about infection and logistics. These are things that we will work on sorting out over the next few days as we get prepped to send me home. I'm not normally the type to ask for prayers, but if you can PLEASE cross your fingers and toes for a safe, successful treatment experience, I would appreciate it. I want to go home!

Moment(s) of Truth

Sorry for skipping yesterday's update! Yesterday and this morning were better days, thanks to IV Steroids. We decided to keep things status quo for another 36 hours to give my body a chance to rest and the Gleevec (oral chemo) to kick in. This evening, we are giving oral steroids one final try. If I "fail" this trial in the next 24 hours, we have decided that it looks like it is time to start the continuous Benadryl infusion. However, this requires admission to the ICU for monitoring If I pass, we will try to continue to ween the medication, and see if I will be able to come off of IV Benadryl. Fingers and toes are crossed.

As many of you know, Mast Cell Activation Disease causes symptoms which mimic food allergies, in which foods are triggers for these episodes of Anaphylactic shock. My known food triggers are peanut and coconut, potentially Almond as well. We refer to them as food allergies since it is food that causes allergic reactions, although it is not through the typical food allergy process. May 14th to the 20th is Food Allergy Awareness Week, and I have two favors to ask you all, and ways that you all can help an individual who has personally saved my life. My friend Madeleine Camille was the individual who reached out to me and told me about Mast Cell Activation, Ehlers Danlos, and POTS. When she first reached out to me, I honestly thought she was crazy, all of this was just a food allergy. But, she was right-- about EVERYTHING. And right now, she is in desperate need of help. Madeleine Camille has the same conditions I do, but more severe. She is currently in such a tight financial situation that she is being forced between health insurance, her prescription/compounded medications that insurance won't cover, safe food, and a wheelchair. She has two campaigns going to help her keep her home. One is called "Ninja Nuts" for food allergy awareness week- she hand designed these shirts, and are available to order:
 https://www.booster.com/ninja-nuts
Madeleine Camille is also triggered by peanuts like myself, hence the "Ninja Nuts" design. She has more info on that page.

In addition, she has a YouCaring set up as well, which explains her full story. I know its weird for me to be asking for help for a friend on here, but Madeleine Camille has truly been my rock, and I hate to see her suffering as well. She is also in the hospital right now as well. The second favor is that if you don't want a Ninja Nuts shirt for food allergy awareness, to contribute anything you can to her YouCaring. https://www.youcaring.com/madeleine-684635

It would mean a lot to me to have my friends and family also help out Madeliene Camille. I am fortunate enough to have all of you, as well as the financial support of my family, but not everyone is quite as fortunate in that regards. Please let me know if you have questions that I can answer or pass onto Madeleine Camille herself.

I will keep you all posted on the steroid trial.

Still No Luck

My mast cells truly have a mind of their own. As I discussed in yesterday's blog post, today was attempt #3 to switch me from oral to IV steroids. After last night went pretty smoothly, I was more confident that the steroid switch would be successful. However, by about 1 PM, I required another dose of injectable and inhaled Epinephrine, so we resumed IV steroids. Of course, I am disappointed, frustrated, and amazed at how stubborn my immune system is being. This is truly a testament to the strength of the immune system, and the fact that my body needs a LOT of time to make any adjustments.

This afternoon, I was fortunate enough to have a friend come visit me to play a few rounds of Finding Dory UNO, as well as visits from my dad, step mom and mom. I worked on two assignments for my online course today, did a sheet from a coloring book, and finished a page in my "painting by sticker" book. I am incredibly appreciative for everyone's love and support through this hospitalization. This is my longest hospitalization yet, and I am still at least 48 hours from potential discharge. I am still really hoping that I will get discharged in time for my little brother's birthday. This has been a very physically and emotionally exhausting week, and my body doesn't seem to really want to give me a break. I had the IV steroids this morning, but I am still having widespread flushing, discomfort, and got another round of breathing treatments. Nevertheless, the only thing that we can do is continue to try again, and eventually, have a successful outcome. My understanding is that we will try again tomorrow, crossing fingers and toes. Hopefully the increased Gleevec will start to kick in and make a difference too.

Stupid Steroids!

Hi everybody,
I hope you are having a great week, it's almost Friday! I really wish that I had great news to report, and that I am going home tomorrow. I didn't post yesterday as I had an extremely difficult time with the switch from IV to Oral Steroids. Although the dose is quite similar, oral steroids are not absorbed as well, particularly in my scenario in which inflammation from mast cells affects my ability to absorb nutrients and medications through my GI tract. I was ok in the morning following my dosage.

However, as the day progressed, things started to slip. Nutritional Services came by and told me that they want to increase my calorie intake to maintain/gain weight and make sure my body has enough fuel to heal. We were trying to think of things that I would find appetizing since the steroids affect my appetite so dramatically (one extreme or the other). I had been craving baked goods, and the nutritionist found a brownie that should have been safe. It was fully sealed and packaged, no cross contact warnings, or questionable ingredients what so ever- we look over it thoroughly. I had a bite of the brownie, and it tasted spicy-- that is often how I know if the food is a trigger. We immediately started extra Benadryl and breathing treatments, but the swelling progressed too quickly, and they had to give me a dose of Epinephrine (same thing as an epi pen, just in the hospital they use a normal syringe as opposed to the auto injector). It seemed to work for a little while, but I still had a lot of swelling, and discomfort on my face and lips, as well as the widespread itching and burning. I had an additional wave of symptoms a few hours later with no clear cause, which again didn't respond to breathing treatments or IV Benadryl, so they had to give me an additional dose of Epinephrine. By this point, I was absolutely miserable. It again provided me some temporary relief, but I was up most of the night fighting the swelling.

Since I had to use more epinephrine, and still was experiencing difficulties, the oral steroid trial was most certainly a  failure. I was extremely frustrated and disappointed (and still am). So for today, I had IV steroids. Once they gave me the IV steroid dose, things were a LOT better, and I was a lot more functional today, although exhausted from a lack of sleep. When I was feeling better today, I made some more things for the nurses out of the IV bottle caps (Cookie Monster, Elmo, Emoji, Duck, PacMan, Daisy)

Assuming tonight goes ok, we are going to try oral steroids again in the morning, and continue to adhere to the same timeline- 24 hours of oral steroids, then 24 hours of oral benadryl.

The hospitalist here has been really amazing in staying in touch with my mast cell doctor. We decided that the current plan is to get me out of this flare first and foremost. We want to try to give the increased Gleevec dose a week or two, and if that fails, then we are likely going to have to initiate a Continuous Dipenhydramine Infusion, or CDI. This is a IV pump that goes through the port that is implanted in my chest that I would go home with, that would give me a small, continuous dose of Benadryl 24/7. Obviously, this is far from ideal, as not only is there a significant infection risk from being on an IV 24/7, but there few (if any) individuals who are on a CDI who have ever been able to come off of it. However, if episodes like this keep happening, it is a matter of quality of life. A CDI would dramatically increase my likelihood of being able to return to school in August, and functionality in the mean time. Again, we are still hoping that the Gleevec will do the trick, but the doctor is having the pharmacist here investigate the logistics so it is available if I need it.

Because yesterday was so horrendous, I am not going to lie, I am nervous for tomorrow. I hope 24 hours was long enough for my body to hit the "restart" button, and tolerate the change in steroid dose. My fingers and toes are crossed, so I could get out of here on Saturday.  Luckily, my doctor will be here through the weekend. This is my longest hospitalization yet, and I REALLY want to go home, be more comfortable, and sleep. However, It has to be a delicate balance, or else I will just end up back here. It is my little brother Cody's birthday on Monday, and I would be heartbroken to miss it. I will post tomorrow, hopefully after a successful day!

Maintaining Status Quo

Good evening everybody! Today has been a day of keeping things where they are at. Last night, I had two minor flares, but they both responded to IV Benadryl. However, because I was still having the swelling, we decided to keep the IV steroids going for an extra 24 hours to err on the side of caution. In theory, I shouldn't still be having rebounds, but we all know that my mast cells don't like to take a break. Additionally, we increased my Gleevec (oral chemo) dose, to see if that may help. I was a little surprised to see that I was noticing some side effects today, but they are still very minimal in comparison to any standard chemotherapy regimen-- just some bone pain and additional fatigue. If the increase will have a positive impact, I *think* it may take a week or two. Physically, I am not the most comfortable, as I still have burning/flushing/itching of my skin, in addition to the bone pain and feeling of fullness, but it is unfortunately all part of the mast cells wreaking havoc everywhere. The medications help, but I am still far from symptom free.

Therefore, everything is kind of a waiting game at this point. If things go well tonight, the plan is to switch me to oral steroids, wait 24 hours, then switch to oral benadryl, and wait 24 hours. Assuming all goes well, that gets me discharged on Friday. Fingers crossed that my body can handle the steroid taper better this time. I am so ready to go home!!

When I get home, I'm pretty sure I am going to sleep for a solid two weeks :P Although I certainly am much more comfortable on the telemetry unit, it still is the hospital, so noise is constant. Fortunately, I have a private room due to my immunodeficiency and being on any form of chemo. Regardless, it isn't easy to sleep with all the beeping and wires attached. Although I could theoretically nap during the day, there are always people coming in and out for one reason or another. Now that the nurses here are getting a better understanding of my med routine, they are trying to combine visits where they have to wake me up so I can get some additional rest.

Today to keep myself busy, Beth, my step mom came to visit in the morning, and we played Finding Dory uno-- you are never too old for Disney, especially Finding Dory! Afterwards, I tutored and did some reading for my online class. Today there were two nice surprises-- one was the therapy dog visit. A Portuguese Water Dog named Mulan came and visited me for 20 minutes or so, and I was having some swelling before hand, so it was nice to have a furry friend to sit with. Shortly thereafter, volunteers came in with a beautiful bouquet of flowers, something they supposedly to every few days to cheer patients up. It appears the organization doing it is called Random Acts of Flowers-- super cute idea. I attached a photo of the flowers. Great way to brighten up the rom, and a pleasant surprise.

Although it SUCKS that things have to move this slowly, I know that if I don't let my body have the time to calm down, I will just end up right back here in worse shape. The steroids suck side effect wise, but that and high doses of IV Benadryl seem to be the magic combination. The problem is that high dose steroids are not sustainable, and wreak havoc on the body. That is where we are hoping the Gleevec will come in and help bridge the gap. The Gleevec still had kept me out of the hospital for the longest time in a while, so I am really hoping that this increase does the trick, and that the steroid reduction goes off without any "speed bumps."

I am incredibly thankful for all of your support, and the doctor and nurses taking care of me. I stand out here like a sore thumb, I am at least 20+ years younger than anybody else here, and when the steroids are doing their job, I look relatively healthy, other than half of a swollen face (yes, it is really bizarre, the right half of my face is almost constantly swollen while the left side comes and goes). I wear my own clothes to try to feel semi human. They all have been working really hard to get me to STOP working (which I really need to get better at doing), to sleep, and to eat. Those are all part of the goals of the next couple days while I am stuck here. I am going to try to force myself to get off the computer tutoring and doing school work a little bit more, and instead do my sticker book, sudoku book, rug hooking, or a novel for a movie coming out soon (yes, it is the book about a girl who is allergic to the world, but don't be deceived- it is NOT about Mast Cell, and the movie actually is about her mother's Munchausen by Proxy). I am also incredibly thankful for all of the individuals who I have met online who also have MCAS. I talk with people who have severity levels more advanced and also more mild than mine, and it helps to know that I am not the only one going through this type of experience. For those with more severe cases, I fear that I will progress to that point, but I know that the earlier that we can get things under better control, the less of a likelihood that things will progress to that point.

So, for tomorrow, all of my fingers and toes are crossed that my body starts hating the steroids as much as I do, and is ready to come down in dosage. I will continue to keep you all posted.

Two Steps Forward, One Step Back

Hi everyone,

I hope your week (and new month) is off to a smooth start! Today has had some ups an downs, but I am remaining optimistic. Last night after I wrote my blog post, I unfortunately required an epinephrine injection due to some stridor (noisy breathing indicating swelling). Luckily, I responded to just one dose quickly, so I was able to stay put on the telemetry unit. However, since there were no new triggers, this was an indication that my steroid dose was being reduced too quickly. Today, the hospitalist I had from my last stay two weeks ago returned. She is on top of her game, and has consulted with my mast cell specialist. Since she is familiar with my case and symptoms too, she is able to identify when I am not at my baseline. 

In addition to the small hiccup last night, this morning I woke up with a lot of discomfort, mostly burning and itching of my skin. I am still on around the clock Benadryl, and will be likely a few days past discharge, but these symptoms are relentless, confirming that I needed the higher dose of IV steroids. The hospitalist decided to re-increase my steroids, to prevent anything from worsening, and to keep me more comfortable. It was clear that my body needs more time to calm down. This of course is extremely frustrating, because I really want to go home, but this obviously is something that can not be rushed. We have to let the mast cells wreak their havoc, and do so safely. 

As a result, I will be stuck here for another couple of days. We still need to switch me to oral steroids, and ensure that I don't have any more "rebound" reactions. In the mean time, it is just a waiting and resting game. In addition, we made the decision to increase my Gleevec (oral chemo) medication while I am here to monitor for side effects and see if it helps. Luckily, Gleevec is a targeted chemo drug, and this is only a dose increase as opposed to a new medication entirely, so I shouldn't experience many negative symptoms.I am still trying to force myself to relax more, but I also use my productivity to try to distract myself. Since I was so uncomfortable this morning, I worked like crazy and finished off one of my two online courses I am currently enrolled in, tutored, and finished revising a reflection paper for my other course. It felt good to get all of those things done.

Even though this has been a bump in the road, things are still moving in the positive direction overall. My mobility issues have finally resolved (mostly), so I am taking regular laps around the unit. Physical therapy will continue to work with me to make sure I don't lose too much strength while I am here, and ready to handle the stairs at home without over exerting myself. I also am able to shower on this unit, which really helps me feel more human throughout this whole experience. I put in requests for a therapy dog visit and art cart visit, so I am hoping that those will help as well. I am keeping track of the experience in my Beads of Courage journal, which I have discussed in earlier blog posts. It sucks to have to add any beads at all, but again is something that helps cope with the more emotional elements of this whole experience. 

Heading off to try to get in as many hours of sleep as I can. Thanks again for all of your love and support.