In addition, about two weeks ago, the Mast Cell community lost a huge member of the team, who was truly a friend to all-- Taylor Nearon. Taylor was 20, and had the same diagnoses as me. She was really helpful for me when I started the CDI (Benadryl pump), and always seemed to know the right thing to say. Taylor fought a long and hard battle, and passed away peacefully after complications. It was so hard to hear about Taylor's passing, and it is scary, but I am comforted knowing that she is no longer in pain. Her legacy and how so many people are affected by her passing is a testament to her character and strength. She founded a non profit to help individuals with Mast Cell Activation and raise awareness. My thoughts and prayers are with her family and close friends. A great article about her, appropriately titled The Battle Ends, the Story Continues: The Battle Ends, the Story Continues
October is National Disability and Dysautonomia Awareness Months. Dysautonomia is dysfunction of the Autonomic Nervous System, which is largely responsible for the "fight or flight" response, and may of the body's most basic regulatory symptoms. There are many different types of dysautonomia, Postural Orthostatic Tachycardia, or POTS, affects me, and is common in patients with MCAS and EDS. For me, this leads to fatigue, a high heart rate, dizziness, anxiety, blood pressure changes, blood pooling, etc. I use additional fluids and salt to help control the condition non pharmacologically, in addition to meds. More information about POTS is available on my blog under the "Links" tab. In honor of National Dysautonomia Awareness Month, I, alongside a club I recently founded, Spoonie Alliance, painted a mural on a "free wall" at my school, which is essentially a wall that you can paint on at any time without any sort of formal clearance/approval process.
I am looking forward to more "Spoonie Alliance" events in the future, and creating a more accessible community at the Claremont Colleges to help decrease stigma and increase cohesion amongst students with disabilities or differences. The term "spoonies" relies to an idea that I *think* I discussed in other posts, known as Spoon Theory. The idea behind it is that individuals with a chronic illness, disability or difference have a limited number of spoons, which is essentially a metaphor for energy. Although most people have a lot of spoons, and can "regenerate" them by resting or doing something relaxing, "spoonies" run out of spoons faster, and have difficulty replenishing them. Tasks that may seem simple could be really hard for a spoonie. Here is a link discussing Spoon Theory: Spoon Theory- But You Don't Look Sick
And a link to my Pinterest board about Spoon Theory and Chronic Illnesses for comedic relief: Pinterest
Tying this into the idea of National Disability Awareness Month, I would encourage everyone to be aware of how you go about everyday tasks, and how others may experience difficulties going through these seemingly "easy" tasks. I find that for me personally, it is some of the easiest things the most people take for granted that end up being the hardest or more exhausting. A great way that you can help a friend or loved one is to ask how you can help-- often times it is the most trivial things that may be the hardest to ask for help with, or the things we might be most embarrassed to ask about.
Another important note is on the mural we painted, that not all disabilities are visible-- although my disability has become more visible, as I have discussed in other posts, there are often situations in which people don't understand that things may be more difficult and/or inaccessible. Just because someone doesn't look sick doesn't mean they aren't-- I am always reluctant to use my handicap placard because people will say things, or sit down in public places when I am really dizzy.
I am starting to become more ok with these things, but it is a journey. Since Taylor's passing, and as thoughts about grad school and life after college come up, I have been feeling somewhat apprehensive. A lot of the things I imagined myself doing before-- teaching, working as a social worker-- are simply not suitable environments for someone who is immunocompromised, and I don't know how much and in what capacity I will be able to work. Sure, I could stay totally stable where I am, improve, or decline but nobody really knows. There is no timeline, no sense of stability. There aren't any great treatments for any of these conditions, and treatment is a lot of guesswork, trial and error.
A common misconception (of the general public) is that the CDI, or Continuous Benadryl Infusion that I am on, is a "cure"-- although it has allowed me to not live in the hospital and become more functional, I still experience symptoms on a daily/nearly constant basis. It was only done as a life saving measure to prevent me from living my life in the hospital (for those of you who are newer followers, I began this treatment after exhausting most other options, and being hospitalized for about 2 weeks with no improvement). I did know this going into it, and I have discussed this in previous blog posts. Depending on the day, it can range from itching or nausea, all the way to deep bone and muscle pain, fatigue, dizziness/syncope, swelling, cramping, yada yada. I have a pretty high tolerance threshold at this point. I do still have to use an EpiPen one to two times a week. Some days my symptoms impact my functioning more than others. I am not trying to discount that there has been a lot of improvement in my condition over the past 6-10 months. There is NO way I would have been able to do anything that I am doing right now a few months ago. It is absolutely doing it's job. I am having more "better" days--but, I still wish there was a magic wand.
It's frustrating. And as many individuals with chronic illnesses know, it is hard to feel unpredictable, and to not know how many "spoons" I will have 20 minutes from now, let alone 2 weeks from now, or 2 years from now. And it can change any minute--- one minute I feel ok, and the next I feel absolutely awful. But in those situations, I just have to take a step back, and try to take care of my needs. It's a learning process, and is going to take time, as well as physical and emotional healing. I have to become more ok with not being ok. One of my doctors calls me a "super coper"-- I try really hard to hide when I am not feeling great, I know all the coping mechanisms, and all the distraction techniques. But, its not a sustainable way to live.
Academically, things are going well-- I am doing well in my classes, and having no problems keeping up. Still debating the whole grad school/going right into the field thing-- I think I am going to just have to evaluate things as they go, and reassess.
Tonight, I did some baking to try to do some "self care." I am trying to find things that I enjoy, which honestly has been harder than I had hoped. Our Fall Break means that I have this Monday and Tuesday off school, so I am enjoying a long weekend at my dad and step mom's house. Until then, I am hoping for some good sleep, maybe more baking and craftsy stuff, and a little R&R. The house still smells like chocolate meringue cookies, so maybe I will just have to make them again :) Also sending my love to all who have been affected by some of the tragic occurrences the past few weeks- Vegas, the wildfires, earthquakes, etc.
I also have included some fun graphics below about Dysautonomia for Dysautonomia Awareness Month:
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