Readjusting

I can't believe I have been back at school for almost three weeks! Time has flown by, and classes start this coming Tuesday. Over the last three weeks, I have been working in the housing office at my school, which was the perfect job for me, because it was regular, not overly physically demanding, and my coworkers and supervisors were more than accommodating. It has helped build my confidence that even when I am feeing pretty crummy, I can still be pretty functional.

Health wise, I wish I could say that my health cooperated with this adjustment. I'm not sure if it is the change in evnerionment, stress, or my body just being pissed off, but I can't seem to get things to calm down. We still could not reduce my steroid dose without significant complications, so I was started on an immunosuppressant, Cellcept. Cellcept is typically used as a medication to prevent organ rejection. As a result, the side effects and precautions I have to take with it aren't pretty. Getting sick could be detrimental to my health, so I have to be even more cautious than I was before about not getting sick- wearing a mask in crowded public places, staying home when bugs are going around school, constantly wiping surfaces, etc. I also started an antibiotic which I will have to take indefinitely to try to prevent some types of infections. I take my second dose tonight, and that I take three times a week.

In addition, my POTS has been flaring as well. My heart rate has been going pretty high, and I get dizzy after standing for more than a minute or two. To try to help that, we increased one of my medications, and I am doing infusions of saline at home. On top of that, my insurance decided that they no longer want to pay for my oral chemotherapy medication, Gleevec. I have been off of it for four days now-- days one and two were ok, but now I am having increased reactivity, bone pain, and fatigue. I am hoping that as the Gleevec wears off, the Cellcept may start to work. I was not having to use any EpiPens or nebulizers for a while, but now I am back to needing them every 3-4 days at a minimum. Assuming that my blood counts are ok, the Cellcept is supposed to be increased soon.

I'm really hoping that transitioning back to classes will go smoothly, and that the lack of Gleevec don't have any detrimental effects. I am trying to distract myself, but its hard when I'm feeling consistently pretty crappy. I have been trying to maintain my physical condition by doing my PT exercises (stationery bike, resistance exercises) both in my room and in the on campus gym, but the gym is kinda a germ pit, so I have to be careful.

Socially/emotionally, it has been great to see people who I haven't seen in a while. I have some great friends and support networks here, and it is really nice having my family close by. I was able to go home last weekend for a break. But being back on campus is a major adjustment-- a lot of people see my port or the pump and kind of treat me like an alien. Its hard not to feel like people are staring, but I know there is not much I could do about it. Sure, I could wear super high cut tops and try to hide everything, but I don't think that I should have to wear uncomfortable clothing when it is super hot out for other people's comfort/lack of understanding. I think over time people will be able to see beyond it, but in the mean time, I feel a little bit like an outcast.

For this semester, I am taking a full course load, and I plan to work in the on campus Writing Center. I have classes starting Tuesday, and training for the Writing Center next weekend. I am not going to lie, I'm feeling kind of discouraged about everything, but I try to keep reminding myself that I was successful in my job the past three weeks, even with all of the stress and adjustments. I am kind of reconsidering my career goals too- I'm thinking of maybe doing something along the lines of education, and maybe holding off on grad school for a while. Part of it is because I feel like if I don't know how much I'm going to be able to work,  I don't want to build up debt to put myself through grad school. Another part of it too is if I'm not 100% set on what I want to do, grad school may "trap me" in a sense.

Anyways, I will update as I can, hopefully with better news! Until next time.

I'm Back!

Wow, I can't believe that it has been almost a month since my last post! I apologize for being MIA-- the stress from moving and going back to school, in addition to the heat, steroid tapering down, the loss of a family member, not so fantastic news from the doctors, and just life in general, things have been pretty insane. As a result, I have been in a substantial flare up for a few weeks of my Mast Cell Activation, as well as my POTS (Postural Orthostatic Tachycardia). As I discussed in my last post, leaving the old neighborhood was heart wrenching, and added to the stress, but I know that in the long run, it is the right move.

Last week, my family relocated, and yesterday, I moved back into the dorms at Pitzer for my senior year! I can't believe that it is my last year, I still feel like a freshman. I moved in much earlier than normal because tomorrow morning, I start my job as a Summer Housing Office Assistant, which lasts until the time that school starts about 3 weeks from now. I will be helping check students in, inspect rooms, etc. I figured that this would be a good opportunity to give both my body and my mind to readjust to a normal work/school schedule, and adjust to the allergens, change in environment, and "adulting." Moving in this year, I couldn't do nearly as much as I have done in the past physically due to my limitations and to prevent a flare, so I was incredibly appreciative of my parent's help, and one of Cody's friends (a neighbor from our hold neighborhood who drove to the new house with us to help us unpack, seriously amazing).

This flare I have been in has been worsened (or possibly caused) by reduction of my dose in steroids. Like it has always been in the past, coming off steroids is extremely difficult. However, I absolutely need to get on a minimal dose. I had a consultation with an endocrinologist, to get their suggestions on the steroid taper. Steroids shut down the adrenal system, and take over-- the taper occurs slowly to "wake them up." However, when you have been on high steroids for an extended period of time like I have, you get all of the unpleasant side effects that I have talked about in pretty much every post (weight gain, moon face, night sweats, hair loss and growth, bloating, muscle loss), and the organs and adrenal system are damaged. I am covered in bruises, and my body is unable to heal itself. My weight, appearance and water distribution have been dramatically affected- I HATE the way I look right now, and am disgusted with the way I look in the mirror. I was hoping the endocrinologist would say that these effects would go away soon, but that wasn't the case. She told me I still am at a dose of more than 4x what the adrenal system produces on its own, and I'm not stable enough to continue the taper at the pace that is necessary to prevent even more detrimental effects, like osteoperosis, diabetes, bleeding problems, etc. Osteoperosis is a major concern, as if I don't already have it, i am likely to develop it, and the medication that would be given to treat it would make me sterile. There is no point to do a bone scan at the moment, since there isn't much that can be done, but that news wasn't so pleasant to receive. And because the taper has to go so slowly, I am likely to have these steroid effects for months, and maybe even years. My adrenal system likely is so damaged that it may not "wake up," which would require me to be on at least low dose steroids for life.

Therefore, we are still trying to at least get my steroid dose to the equivalent of what my body should produce on its own. However, the taper this past week has effected me so dramatically that I have had to use an EpiPen almost every day (I hadn't used it at all since the hospital), and I have felt pretty miserable. As a result, I started infusions of saline (salt water) once a day, which is also supposed to help my POTS, which has also been out of control. My resting heart rate has been in the high 90s, when it is supposed to be in the 70s or 80s.

I met with a new primary care doctor last Friday to discuss these issues and establish care. We are working on finding another local doctor to manage the Benadryl pump, but we had to temporarily increase my steroids because due to inflammation and my weakened immune system, she thought she heard fluid in my lungs. This has happened to me before, and isn't serious unless that fluid gets infected. I had a chest x ray, and didn't hear anything back, so I am assuming its ok. However, because of how often I have been needing to use the epi pen, and the inflammation that she could see and hear, we likely will need to add another immunosuppressant drug. These are also highly unpleasant, but still have a better risk/benefit ratio than steroids. As a result, I will have to be on constant antibiotics, and if I get sick, it is REALLY not a good situation, so I have to be extraordinarily cautious to not get sick or be around anybody who can be sick. It also can cause a wide variety of other issues, so I will have to be monitored very closely. Hopefully I won't need it, but if I fail the taper again this week, that is what is next.

Dorm Room

So, I wish I had better news to report-- but I guess its a mixture of good and bad stuff. I am happy to be back at school and returning to normalcy, but I am disappointed with the way things are progressing health wise, and how I am feeling. I am hoping that as I get settled, things will improve. I just met the new home health nurse today-- I had to call them to come because my incredibly coordinated self accidentally cut my IV line when I was adjusting the dressing (adhesive). It started leaking EVERYWHERE, and it looked like someone got stabbed in my room. I couldn't help but laugh because only I would have these weird catastrophes, but it all worked out ok after an EpiPen and getting reconnected. I start my new job tomorrow, and will continue to get settled throughout the week. Enjoy the end of your weekend!

Prepping for the Big Move and Frustrations

(Forewarning-- this post contains a fair amount of whining, so bear with me!) It is with mixed emotion that I announce that our house is sold! Thankfully, it only took a week, because I honestly didn't think I could keep up with having to be out of the house for fixed time periods every day, and the constant pressure that someone may show up at any moment and want to see the house, without us in it. This isn't a problem for most people, but it is extremely difficult for me, because I have "good" and "bad" time periods every day, and with the pump and general preparations to leave the house, it takes me about an hour to get out the door. It also is just naturally easier/safer for me to be in the house for comfort, and because my immune system sucks. Also, I was worried that at the open houses, people would bring in things I was allergic to, and be touching surfaces, carrying G-d knows what germs.

Luckily, we have amazing neighbors who let me pop into their house for time periods that I needed to lay down. Although it is great that the house sold, it really sucks to leave our neighbors. They are all SO amazing and supportive of our entire family, and we are going to miss having them a lot. Cody has been spending time with the neighborhood kids literally 24/7, and there have been lots of crying sessions amongst us all. Below is a photo of my dad the "sold" sign going up, then one of the neighbors jokingly taking a sledgehammer to it.

All of the neighbors have seen me grow up, and I have seen their kids grow up as well. I'm sure we will be back to visit them soon, but regardless, it is sad to go.

Health wise, things have also been a little rough. The CDI (Continuous Benadryl/Diphenhydramine Infusion) has been doing its job, however, I have been feeling pretty consistently crappy for a few weeks now. My steroid dose is now reduced to a more moderate level, but even with a slow taper, I have been having a lot of steroid withdrawal symptoms in conjunction with my Mast Cell symptoms, which include my hair falling out, nausea, fatigue, body aches, appetite changes, swelling, itching and burning, the list goes on. I am seeing an endocrinologist before we move so we can figure out how to slow down the taper even more, because it is critical that I get off the steroids. I am supposed to stay at my current dose for 2 weeks, and then reassess from there. 

I say that the CDI is still doing its job, because without it, there is NO way I would not have been in the hospital 5+ times since my last discharge, and I am still 20x more functional than I was before. My steroid dose has been cut down by about 2/3 since discharge. Once we are able to cut it by another 1/4 or so, my "moon face" should start to go away. I really want to get to that point not only because the steroids are so terrible, but I honestly hate the way I look right now. I know its the medication, but the best way to describe how I currently feel is like a hippopotamus. This feeds into eating concerns, so I keep trying to tell myself that as long as I am a healthier and more functional hippopotamus, I can be a hippopotamus. If we can't lower the steroids by much more, then we may need to add another immunosuppressive agent (likely another type of chemo), which I want to try to avoid if possible. 

A very common misconceptions with the CDI is that symptoms will be resolved, because it is such an invasive treatment. However, the CDI/Benadryl only blocks one type of receptor/mast cell mediator, Histamine, while mast cells release hundreds of different types of mediators, only a few of them are actually known. I take other oral medications for some of the other mediators, but again, these only provide partial coverage, hence why the Benadryl isn't a "cure all." It also does not prevent the Mast Cell Disease from progressing. I knew this going into starting the CDI, and was given plenty of fair warning, but naturally, I'm frustrated, because I just want to feel better and be a normal 21 year old. I know its not realistic, but I hope that we can get a better grasp on things to get me feeling closer to normal. I think going back to school in a little over two weeks will help as well, since now my full time job is my health, while I am only a part time student and tutor. I have the best of the best in terms of my medical team, but even they say that all we can really do is trial and error and experimentation, and then figure out what works best and go for there. So, I am trying different combinations of timing, medicines, etc. to try to see which patterns are the most effective. Although I appreciate suggestions, I can assure you that my team and I have done our research, and are working on the best solutions for me and my case. It also is tough to have to shift medical teams with this move, but again, I think in the long run it is the right thing.

On a more positive note, I am really looking forward to going back to school and starting my job as a Summer Housing Assistant. I move in about 3 days after we move, so it will be pretty crazy, but there will be lots of hands around to help, which is important since I am not supposed to lift or do much. Physically, I have made a LOT of progress in physical therapy, which is really encouraging. When I left the hospital, I had to crawl up the stairs at my house, and was almost discharged with a walker due to orthostatic intolerance from my POTS, and muscle loss. Now, I can easily get up the stairs, and today, I was able to walk 1.2 miles in the heat, although it probably was too much for me, because it is 9 PM and I'm ready to fall asleep!

I am almost done with my Sign Language class, and then I will be caught up with my graduating class. I am looking into grad school options, and preparing to take the GRE. I am not sure if I am going to be able to handle being a full time student, my part time job, my health, and grad school apps, but I want to have that option available to me if I would like. I think I just have to try to slow down and take things an hour at a time, and constantly assess my surroundings and "spoons" (for those of you who don't know, spoons refers to spoon theory, which is the idea that individuals with chronic conditions only have a given amount of energy, and must space it out). One of the most frustrating things about Mast Cell Disease is it is incredibly unpredictable- literally something can almost kill you one minute, and then be fine with it the next. This is true with foods, medications, routines, etc-- everything is constantly changing. Thus, I can't take anything for granted, and have to expect the unexpected. I know this will take time, and I am getting better at it every day, but it certainly is a long journey.

The Risk is Real

I apologize for not posting in so long, the last week has been a bit of an... adventure? As I have posted previously, my biggest fear with starting the CDI (continuous diphenhydramine/Benadryl infusion) was getting an infection in my port (the needle/IV access on my chest). Last week, I was changing the tubing on my pump, and the last step before reconnecting to the pump is to "flush" the IV with saline, or salt water in a syringe. When you do that, you check for blood return, which is where you pull back on the syringe and see if there is any blood there- generally, you should almost always have blood return. When I checked, nothing came back. I called the home health nurse who had to come at 12 AM to change the needle and dressing. This meant I was off the pump for a little over an hour, which was no fun. I gave myself liquid Benadryl every hour to try to mimic the dosing, but I felt pretty terrible and was scared to move.

After that, started having some pain in my shoulder a little bit above my port, as well as a white spot on my skin. I called the home health nurse back again, but this time because of the spot and the pain she told me I needed to go to the ER to get assessed for an infiltrated (leaking) or infected port. This of course was terrifying, and I HATE the ER, but because I am extremely immunocompromised they got me into a private room quickly, and tried to get me in and out as soon as possible. I didn't have a fever, which was good news, but the lab tests they ran were ambiguous. Most of the signs for infection weren't there, and they said the site looked good, but because a couple of the lab tests were off, they decided to give me antibiotics as a precaution.

For those of you who aren't familiar with Mast Cell patients and antibiotics, antibiotics generally don't go over well. This is further complicated by our immunocompromise from medications or other immunodeficiencies (I have both). I was worried I would react to the antibiotic they were giving me, since it is on the Mast Cell "no no" list, but I had tolerated it before, which is the best indicator of future reactions, so we premeditated me and ran the medication very slowly. It was uncomfortable, but I was able to tolerate it, so they sent me home on oral antibiotics until the culture would come back.

I thought I was in the clear, but I took my first dose of the oral antibiotics while my home health nurse was with me, and immediately had a pretty strong reaction. Luckily, I was able to control it with the pump. I called my doctor and got a prescription for a different antibiotic. I tolerated 2 doses of that one, but on the second dose, had to use my emergency nebulizer, so we had to stop. I was also supposed to do a steroid dose reduction at the same time, so the doctor and I decided that we wanted to prioritize the steroid drop over a hypothetical infection, and discontinued antibiotics. I monitored my temperature closely over the weekend, and thankfully, the culture came back negative this morning. By now, I had been suspecting it would come back negative, but it still was a big relief. Regardless, this whole thing was very scary and I hope it won't happen again, but realistically, I know that it eventually will. The holiday week has complicated things since it took an extra few days for the culture and my primary care and or mast cell specialist have been out. This week, they are both out. I am still trying to navigate finding a new primary care doctor close to my parents and another close to school. The mast cell specialist also tried me on a new medication to try to help ease the steroid taper, but at this point I didn't tolerate it, and they are on vacation. This more aggressive steroid taper will be good in the long run, but for right now, it sucks, and I am having 2-4 bad days a week because my dose is changing once a week.

On top of this, I felt really guilty because I had to call out the home health nurse another time, this time because I was making my protein shake into ice cream and it exploded all over me and my dressing. She ended up coming out 3-4 times last week, so I have been super careful so that she does not have to make any emergency visits again any time soon. The mast cell specialist also tried me on a new medication to try to help ease the steroid taper, but at this point I didn't tolerate it, and they are on vacation.

More fun, there was photographs taken of our house, so all of last week, my family was packing and purging, and getting rid of anything personal for the pictures. I tried to help here and there, but theres not much I am supposed to do physically, although a lot of the time I do it anyways. With the potential infection, I had to be much more careful and not use that arm or lift. The next weekend is going to be hard, because we are not supposed to be in the house most of Friday through Monday. This is difficult for most "normal" people, but for me, it is especially difficult. It takes me at least an hour to get out of the house, and it is riskier for me to not be in the house because of my immune system and lack of access to supplies like my nebulizer or other emergency things. I am going to go stay at my grandparents for two of the nights, but the whole process t is still rather difficult and stressful. If anybody is looking to buy a house, let me know! :P

I'm working on the final unit for my ASL class, and then we have a cumulative review. It certainly has been harder than I had anticipated, and I am not sure how well I can actually sign, but I know that I can at least understand a little bit now. I am still planning on heading back to school in early August for my summer job. In the mean time, I am trying to take things day by day, but that is much easier said than done. Today in particular was kind of rough, but I'm trying to keep on pushing through!

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!