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!