Losing Invisibility

Good afternoon everybody! No real updates at the moment. I started classes, and for my bioethics class, I wrote this short reflection, which I actually felt proud of, so I figured I would share it here.

As someone who has long identified as having an invisible disability, and having served as an effective self-advocate in the past, I did not anticipate that returning to college with an “invisible disability gone visible” would be so difficult. Although I have worked to try to keep my identity separate from my disabilities, some of my physical and cognitive limitations end up shaping everything I do, both consciously and unconsciously. For example, as a result of my difficulties with auditory processing, I tend to take notes on the computer, which sometimes has differentiated me from other students, particularly in courses that don’t allow computers. It is something that I know works best for my style of learning, and my “go-to” notetaking method. But outside of classroom situations, my auditory processing problems generally remained invisible, as well as my physical health conditions.

            However, as my Mast Cell Activation Syndrome has progressed, and now require around the clock intravenous treatments, my disability is not only visible, but pronounced. Most individuals, especially twenty-one year olds, don’t walk around with a pump that clicks every two minutes. Nor do they have facial rounding, bruising, tremors, and all of the other side effects which come as side effects of the steroids and other medications that I am on. Initially, this took some getting used to even around the house and my family, but returning to school, I am more conscious than ever of the effects of my condition and its associated treatments. I am constantly aware that I am different from “the norm,” and not able bodied. Although it is rare for this to be stated to me explicitly, the stares, pity glances, and silence that consumes a room when I walk in is telling enough.

            I suppose that I am more conscious of other individuals’ behavior changes because my disability was one somewhat invisible. I was fortunate enough to be “invisibly disabled” for most of my life, up until getting sick in college. Reflecting upon this idea, I wonder how individuals who are visibly disabled from birth cope with others noticing their differences. Do they also feel self-conscious about it constantly, or is that something that is “the norm” for them? I believe that young women in particular suffer the most from the problems associated with being “invisibly disabled.” Something that I have experienced personally and seen in many of my peers is the assumption that any physical symptoms is psychosomatic until proven otherwise. I do believe that there is a deep connection between the mind and the body, which creates a constant feedback loop, but it is important to differentiate correlation and causation. Just because someone has an anxiety disorder doesn’t mean that their pain or nausea is simply from nerves, and can be cured from “just calming down.” Although anxiety may be a contributing element of their physical symptoms (and sometimes the cause of it), doesn’t mean that one should assume that it is psychological.

            A saying that I have heard from others in the chronically ill community (which is particularly strong online), is that doctors are told in medical school a quote coined by Dr. Theodore Woodward, “when you hear you hear hoof beats, think of horses, not Zebras” (1940). However, from someone who is a zebra, and was labeled as a horse for most of my life, I think that it is critical for medical professionals to think of horses, but also keep in mind that zebras are out there.

References

Sanchez, A. (2012, November 13). When you hear hoofbeats, don't think zebras. Retrieved from

https://www.digitalistmag.com/lob/sales-marketing/2012/12/06/when-you-hear-hoofbeats-dont-think-zebras-022309

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!