It has already been three full weeks of classes! The time has simply flown by. I am already rapidly approaching my first sets of midterms and papers. I am currently enrolled in 4.5 credits (in which 4 is a full course load)-- Psychology and Law, its corresponding lab course, Bioethics, Gender Theory, and Sociology of Health and Medicine. Although all of my classes have been really interesting thus far, the bioethics and sociology of health and medicine courses have been particularly interesting wince they are relatable to so many of my day to day experiences.
I am getting into a new routine with class, homework, studying, and (attempting) to take care of my health. Unfortunately, I did have my first ER trip for a reaction last week. Luckily, introducing myself to the fire department paid off, and they knew what to do. I had gotten stressed out because my ride from one class to another was late, so I tried to fast walk to my next course during my difficult time in the morning. Eventually I was picked up, and I tried to go get a water before going to my class because I noticed I was dizzy, but I passed out, and then had an anaphylaxis episode. I was armed with a note from my mast cell specialist, so once everything stabilized, I persuaded them to release me, and I pushed myself to go to class later in the evening.
I have classes Mondays through Thursdays, with Mondays and Wednesdays being my longest days. By the time Thursday mid day comes around, I am totally wiped out. I have been able to go home every other weekend or so, which has been amazing, and I was able to go home for my dad's birthday. It has been great having them close by, and its helpful to know that my family is there if I need them.
Socially, things have improved, but still have been difficult. I just don't have the stamina like I used to, and it has been harder to distract myself. I am not finding as much enjoyment in some of the things that I used to do. Nevertheless, I am incredibly thankful for those friends who have reached out to me and stood by me in this transition, and I have been trying to reach out as well, which seems to have been helpful.
Last weekend, before going home for the weekend and my dad's birthday, I went to San Diego for a follow up appointment with my mast cell specialist at Scripps Clinic. I was able to go down to San Diego a little early, and check out a top 10 allergen free bakery (which was SUPER cool and delicious), and see a friend who has the same conditions as me, and visit her at her school for her birthday. My dad met me there, and we had my appointment, then drove home. Magically, after my ER trip, the rejection for the oral chemo was reversed (although that may be unrelated). However, because I had already kind of went through the withdrawal from it, and we know that I was allergic to some of the excipients (other ingredients) in the medication, and it is still a form of chemo, we are trying to avoid going back on it. Instead, since the immunosuppressant is showing signs that it may be working, we are doubling that dose, and may double it again. We also adjusted some of the settings on the Benadryl pump to see if it provides a more complete coverage of my symptoms. Unfortunately, everybody is kind of "flying blind" in our situation, but I was extremely relieved that he was not giving up on me (something I had been worried about). I am still using EpiPens at least every few days, which is not ideal, but if it keeps me out of the hospital, then I will do what I can.
Not going to lie, I am worried about the immunosuppressants and school. From the steroids that I am still on (although we are going to try to ween it down very slowly) and the immnosupressants, as well as my existing immunodeficiency, I CAN NOT get sick. If I do, it likely would crash my adrenal system, and require hospitalization, which comes with its own host of infection risks, and I don't trust the hospital here. I am trying to do what I can in terms of hand washing, cleaning off surfaces, etc, but I am on a college campus after all, so I can only do what I can do. I am working with some other students to start a club called "Spoonie Alliance" which will be a highly accessible/fun event group that plans substance free alternative events on some weekend evenings.
My POTS (postural orthostatic tachycardia) symptoms have been particularly debilitating lately. Even with following all of the doctor's recommendations such as a high salt diet, fluids, etc, I can't stand in line for more than a couple of minutes without feeling faint. If I walk around, I am ok, because my circulation keeps going, but standing in lines is a no-go. I am trying to exercise and do my physical therapy to help as well, but it doesn't seem to be making much of a difference there. So at the dining halls, in addition to the food allergy request, I sometimes ask for help with getting food from the back, since it is safer with the food allergy anyways, and people have been pretty accommodating. Since I am closer to Scripps Clinic now than Stanford, I have an appointment with another POTS specialist at Scripps the next time I follow up with the mast cell doctor to make sure that we have all the bases covered.
Over the next few weeks, as the stress levels continue to climb, I keep reminding myself that I need to implement more self care, but naturally, that is easier said than done. Leaving the weekends to kind of "crash" ensures that I can make it through my Monday through Thursday classes. I only missed one class so far (when I was in the ER), so I am staying caught up on my work, and trying to stay ahead of the game as much as possible, but at the same time, I do need to occasionally let myself take a break, because I know that if I don't tone things down, I am going to end up crashing again. I suppose it is just difficult seeing everyone around me with higher levels of energy, going out, exercising more, and doing other things that are beyond my capabilities, and that leads to guilt. I try to just redirect that energy towards being productive. My normal is so different than others-- heck, in my class the other day, I started having shock symptoms, went outside, did the epipen, and came back in. Again, probably not the best self care, but I got through it. It is hard to convince myself to engage in more self care when I know I got through it, but at the same time, I have to be more aware of my needs in the first place to avoid these situations.
The immunosuppressant was increased today, so I am crossing my fingers and toes that it kicks into full gear sooner rather than later. I was hoping to travel with my family after graduation in May, but if things continue at this rate, the doctor said it was unlikely. But, it is a goal (in addition to actually graduating itself). I appreciate the love and support, and ask that you please continue to bear with me!
