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.