The Big Announcement & Scripps Clinic Follow Up

In my last blog post, I hinted to some major upcoming transitions on the horizon for my family and I. Drumroll please.........

We are relocating to Southern California! For those of you familiar with the area, we will be moving in August to the Thousand Oaks/Newbury Park area. I know this is going to come as a shocker to most, as my dad has always said he would never move back to LA, and we are so well established here, but its true! I PROMISE that if one of us has not told you personally, we honestly haven't gotten a chance yet because of how quickly things are moving. This whole scenario is shocking to us too, and has moved incredibly quickly. My dad, who is an incredibly hard worker, has been experiencing burn out, and it was clear that we needed to change things, and quickly. Two weeks ago, when we were in Southern California for a family event (literally 2 days there and back), we stopped at some homes in Ventura County along the way home to evaluate neighborhoods of possible businesses my dad was interested in investing in. At the family event, a rabbi spoke about going after your passions, and that since life is so short, you have to go for it.This message really resonated with my dad, and as a family, we realized that relocating to an area which is less expensive, closer to my school, and closer to more family was the best option for our family. Within 2 days they already had found a house similar to our current home, in a fantastic neighborhood with good schools, resources, and literally a block away from one of Beth (my step mom's) closest friends (that part was actually by total coincidence, we figured that out after the fact). My dad was able to find a sustainable and less stressful solution to keep his current job, but modify it to better meet our family's needs.

Cody, my brother, reacted surprisingly well. He will obviously have to change schools, but this neighborhood has its own public K-8 school. Since he is going into 5th grade, he normally would have to start at an elementary school for a year, and then transition to a middle school. This school is walking distance from the new house, and will allow him to stay all the way through 8th grade. Additionally, Beth still has lots of friends in the area with kids around his age or a little bit older, who he is excited to see more often.

Although this move is going to be positive in the long run, it is incredibly difficult to be moving away from all of our friends, neighbors, and support systems here. We have such a great network here, and the best neighbors anybody could ever ask for. I am not sure it has fully sunk in for me yet, or really for any of us, but we are trying to spend as much time with everyone here as we can.

This move is also going to be a little technically challenging for me. They are moving the same weekend that I am moving back to school to start my summer job. For packing, in theory, I am just doing separate school and new house piles. However, I am physically not able to do too much of the packing. Additionally, chemicals used for house repairs and cleaning aggravate my mast cells, as well as all of the dust that comes up from deep cleaning. Being kicked out of the house for open houses on flare days could be problematic, hiding medical supplies, etc. I will have to transfer all of my home health care and specialty pharmacy companies switched for my benadryl pump, in addition to a a new primary care doctor, specialists, etc. since its not something I can go without for even more than an hour.

I will figure things out as we go, but it certainly has added a significant level of stress and anxiety, which is part of why I haven't posted sooner. I have regressed a little bit in terms of my ability to control my anxiety and comfort with eating, but I am working on getting back to a better baseline.

This has also affected my mast cell symptoms. I have been having to use more medications than I would like to keep symptoms under control. I had my follow up with my mast cell specialist in San Diego on Monday.  This was my first time flying on the pump. On the way there, I had a problem getting a wheelchair, and a service agent who was extremely rude. On the way back on the plane, a woman thought it would be funny to pass around peanuts, make peanut jokes, etc. after she overheard the gate agent hand me a peanut dust allergy slip. Luckily, everything was fine, but it was frustrating and discouraging. My "twin" (another MCAS patient who also sees the same doctor) was nice enough pick me up from the airport and spend the entire day with me. We checked out SDSU, where I am interested in attending grad school, went to my appointment, and then stopped at Nordstroms on our way back to the airport.

The appointment itself went well. We agreed that I need to get off steroids ASAP, so in order to do so, we added in another medication to try, and reduced my chemo dose slightly as it was causing some additional side effects. I had a steroid decrease yesterday, and it has been pretty brutal the past 36 hours. The steroids really suck-- I still have a major moon face, difficulty regulating hunger and temperature, and my hair is falling out even faster than before. However, I know that by tomorrow things will start to improve, until the next dose reduction. Another perk of moving to Southern California is that I will be closer to my mast cell specialist (and where I hope to go to graduate school). I have been making a lot of progress with physical therapy, the stairs are getting easier for me. I am walking less outside because of how hot it has been, but the ultimate goal is to get me back to school with as much functionality as possible. All of this packing has ended up being physical therapy in itself.

Last thing, as a stress reliever/fun thing for me to do, I am going to start selling some of my IV cap art per request. I attached a picture below of an example. Each letter is made to order with the colors of your choice, and I am currently selling them for $8. If you want one, send me a message on here, or email me at arielle@davisfamily.cc.

I feel like I am forgetting something major from this post, which will probably occur to me the second I hit publish. Anyways, I hope you all have a great week, and enjoy the last few days of June!

Exploring, 21st Birthday and One Month on the CDI!

I am SO sorry it has been so long since my last post, but things have been a little crazy around here to say the least! Lots to cover in this post. My 21st birthday went a LOT better than I had anticipated. Every year, there has kind of been some major catastrophe on my birthday. This year was the first year that was catastrophe free! Well, it wasn't totally free of problems, but overall, I had an amazing day. It turns out that I was actually getting Benadryl in my pump for the 2 weeks prior that I was allergic to, causing problems with my dosing (I didn't even know that you could be allergic to Benadryl, supposedly it was loaded with preservatives). That was straightened out a few days after my birthday, but caused me to have chipmunk swollen cheeks on top of my steroid "moon face" on my birthday. I'm not too happy with all the pictures, but an awesome day makes up for it :) I went to lunch with my step mom, got my nails, hair and make up done, and a close friend from school came down in the afternoon to spend my birthday with me, and then to dinner. Thank you all for all of your birthday wishes and making it a special day as well :) Some pics below:

Ordering my first drink and getting carded (which I couldn't actually drink)

My friend and I who shlepped out to me to make my day special!

I am continuing my online ASL class, and it is a lot harder than I thought. However, I seem to be doing really well so far, and I am pleasantly surprised with how much I am learning given that it is an online class. The formatting of the class is kind of wonky-- we only have 24 hours once a week to complete a 30 question quiz and a 100 question exam, in addition to weekly online lectures and videos. It is a 6 week course, so that will take me through late July. Tutoring has slowed down significantly since most people are on summer break, but I am keeping it up in the background. That has given me a little more time to do some more IV cap art, but I am still managing to way over do things, particularly the last two or three days. I made the cap art which I will include in a picture below, and cookie monster cupcakes. I am continuing to work on slowing down, getting nutrition, and navigating all of these transitions.

Last weekend, I finally got the opportunity to travel away from home for the first time overnight since starting the CDI, or Continuous Diphenhydramine/Benadryl Infusion. It was certainly overwhelming and very taxing physically and emotionally, but overall was a very positive experience, and totally worthwhile. It was great to see lots of friends and family, and to get to put my feet in the sand for a couple of minutes (and congratulations to Daniel and Asher!).  Additionally, it was the one month anniversary of being on the CDI, which has dramatically improved my quality of life. I am excited to see what the future brings! There are lots of transitions and changes coming up, so stay tuned!

Finding a Balance, A Clean Start

One of the greatest things about birthdays is the hopes and wishes you bring into the next year, and feeling like you have the opportunity to improve yourself and your life. This year in particular for me is a big one. Not only have I just undergone a major medical transition and decision period, but it is also my 21st Birthday, which is more of a big deal for others. Because of the CDI (Continuous Diphenhydramine/Benadryl Infusion), I can't drink, but any milestone like this should call for a moment of reflection and celebration, because my health has been so precarious. I have had many close calls this year, transitions, decisions, and accomplishments that I probably should give myself more credit for. Some big ones I can think of are maintaining above a 3.75 GPA, holding a job (even though it is online) in and out of the hospital, managing my health situation, maintaining sanity and mostly a positive attitude, fighting for what I believe in, obtaining a scholarship to obtain a conference (that I unfortunately won't be able to attend), and becoming more active in general decision making. My anxiety finally has decreased-- it is still high, but I see improvement.

Grades from Online Classes (sorry, I know I am bragging)

My birthday itself is on Monday. I have plans for dinner with a friend and my immediate family, but nothing else planned yet. I tried to look online for some ideas of things to do but everything seems to involve drinking, smoking, or gambling. I am hoping I will feel better by Monday too because the past few days, I have been trying to figure out when to give myself a bolus (extra) dose of Benadryl. I was told that I was not bolusing often/early enough. I don't like to do it, because that is when I do actually experience some drowsiness. Over the weekend, I have been tasked with giving myself the extra dose with any major symptoms, so hopefully by Monday, I will have a better hang of it and have less fatigue. In an attempt to do a "clean start" for my birthday, I have been staying up too late cleaning up my room and desk. I also end up cleaning or organizing things around the rest of the house because I feel guilty, even though nobody has asked me to actually do any of it. This has NOT been helping matters, which is another thing I need to manage better. It feels good to have everything cleaned up, but it is not helping me feel better physically.

Otherwise, things have been going well. Unfortunately, my primary care doctor is moving, so that is another transition happening at the same time that we are hoping to get sorted out this week. Tonight I change the tubing on my pump by myself for the first time. Academically, I started my American Sign Language course. It is all online, and I found it to be a little overwhelming at first, but things seem to be more manageable now that I actually understand how the course works. I have my first test either tomorrow or Sunday. I am lucky to have multiple friends who know ASL if I need help, and I can take the course pass/fail if necessary as well. Food wise, I feel like all I have been doing is eating, but I have noticed that I am getting less energetic around meal times, which I think means that I need to be eating more or more protein, both things I have been working on.

I certainly am ready to go back to school sometime soon-- the plan is the beginning of August. With my clean up, I am sorting some items out for school as well. I have checked with home health and my pharmacy, and they said that they will be able to help facilitate the transition when the time comes.

My plan for the rest of the evening is to watch Live PD, a favorite Friday/Saturday night tradition, and do my tubing change for the first time. For the weekend, Cody has a baseball party tomorrow, and I would like to finish up some of my cleaning. Thank you all again for your love and support, and I will post again soon!