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The Chronic Illness Village

I firmly believe that it takes a village to get through life with a chronic illness. You need people to help you through the worst, to share the best moments with, to get opinions from when needed, and to help give life more normalcy. My life isn’t close to normal right now. I’m in a unique situation with school, I have gastroparesis, and a lot of other things too. Some days like this past week it took a village and a half to get me through. Making decisions is one of the hardest parts of my life with gastroparesis. Medication choices come with a laundry list of scary side effects that you never want to really think about. But I am at a point where I want a treatment because I am sick and tired of feeling like this everyday. Plus I just finished a 3 month round of pantoprazole in an effort to get rid of my gastritis and ulcer. So this is prime time. However, added bonus is being a side effect magnet, especially those neurological side effects like lightheadedness. So that puts Reglan out of the running immediately. Botox isn’t covered by my new insurance even it is the ideal treatment after a successful administration in June. So we are left with pesky old Erythromycin. Now I would be fine with this, except there is a little warning about long qt syndrome that jacks up my anxiety a lot. So here is where my village comes in. They helped me maintain normalcy and reminded me of other things, keeping me distracted enough to not worry about it until I had a chance to talk with my doctors. At which point I had an EKG and found out I was in the best spot to be starting and that I would get repeat EKGs. My medical team is full of caring superstars.

Beyond that I go to school with a group of 118 other people. 59 are in my class and 59 in the year above. We all rock grad school together and help each other get through. This group of 118 has helped me get through these first 8 months of the program. They provide joy, share the same goals (which is huge), help motivate me to be better, and give a space in which to vent. It is a definitely a team effort at points. I am also super lucky because some of the second years who we don’t interact with as much, have seen me at my worst and have helped remind me that I will get through. This happened on Thursday when I had abdominal pain that was my first symptom of my ulcer/gastritis and hadn’t felt since before the diagnosis of those 2. I was waiting for a review session to start when the pain hit and all of a sudden my emotions flooded and I went into a panic and was a minute away from bawling. A second year came up and asked how I was and my voice started to crack and she talked with me for a minute, calming me down enough to get through that review. Without her, I would have cried for over an hour likely. It is people like that who are in my village that make this whole thing just the tiniest bit easier. They are my flickering candle and sunlight when everything else seems dark. This is why I share my struggles, because I could never in a 1000 years get through this alone.