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!