My Story Journal

F*ck the American healthcare system

Warning: really long chapter with a lot of cursing agead.

For a bit of context to this entry because I don't think I've ever mentioned this before, I have been in chronic pain since I was in 8th grade. I think that was either the year before or the year I started this journal/log of my life. My knees cause, and have been causing, me horrible pain and now it's progressed to my hips and ankles over the past couple of years. I use a set of forearm crutches that I bought with birthday money to get around on my own and they have been helping for the most part. Once I move out away from my family, to a friend's or college depending on the timing, I plan on investing in a wheelchair for myself because I think that's the best option for me. I have been seeing an orthopedist for a while now and have been working with her to get to the bottom of this. We suspect it's a hypermobility related condition. About 3 or 4 months ago I had an MRI done on my knees to rule out a structural issue. This leads us to last Friday.

Last Friday I went in to the office only to be told that my doctor had a family emergency. Whatever, right? Things happen that you don't really have much control of. So, I just reschedule and the earliest they could fit me in was today at 10 am. This leads us to today.

I wake up this morning and it's already a rough start. I wake up early because my sleep schedule is ass and get a mini apple pie from the fridge to start my morning on a pretty good note. I open it and start eating the bad tasting crust around the edge, because if you haven't figured out already: I'm weird as fuck. Accept when I stab into the pie to make sure it's an apple pie (really the only pie I like besides pumpkin) I find out it's a cherry pie. Which is disappointing for me so I bring it up and offer it to my dad who had just gotten up for work. He takes it and I go back to eat another pie, this time it was actually apple. After a while I go back to sleep for a bit before going upstairs (bedrooms in the basement) to say goodbye to my mother. Turns out, my mother is running late for work and my brother missed the bus for school because I went back to bed after my alarms. There was no point in me going into school for a couple hours and do nothing (most of my classes are actually studyhalls/free periods since I'm a senior). So it was planned that I woul stay home. When I went up to say goodbye to my mom before work, I tell her the time and it turns out that she forgot to wake up my brother so he didn't get up until after our bus already passed. So that was another bad thing to add to my list for the day. Now skip to about half an hour to an hour ago.

My father calls the home phone (yeah we still have one, why I couldn't tell you) twice before texting me and telling me to call him. So I go upstairs, again basement dweller, and call him. He tells me that our family friend, who works at the office I go to, called to tell him that my doctor wouldn't be in. I ask if he rescheduled for me and he said no so I called them to reschedule, now I'm at my limit at this point. So I call the office and am on hold for a very short amount of time before someone picks up and helps me. I explained what was going on and they tried to reschedule for me. Key word: tried. The computer was slow and they apologized but I was at my limit at this point and near tears. They tell me the earliest they can get me in is April 22nd. I ask if there is anything sooner as I've waited about 4 months at this point for an appointment to go over my MRI and finally get answers as to what to do next and probably a definite diagnosis and have been in pain since I was in the 8th grade. They feel bad and look again for me as well as telling me they'll put me on the cancellation list, a list that means I will take priority for an appointment if any appointments up until my appointment are canceled. They look again and even a third time for me to be sure there isn't an appointment sooner, there wasn't. I, at this point, am near crying over the phone as I make the appointment for whatever doctor can get me in soonest and end the call. I don't blame the receptionist for this nor do I blame the doctor. At this point I blame the healthcare system in this damn country for not taking me seriously in the damn first place.

Further back, about my freshman year, I forced my father to take me to urgent care because I was in pain with my knees. My father, being my father, blamed me for "not wearing the right shoes". I saw a doctor there and was misdiagnosed with patella femoral pain syndrome and was sent for physical therapy. I went to therapy all that summer and it didn't do much if anything for me. After a year or two of that I went back to my orthopedist to try to get a real diagnosis, at this point I had done my own research and found out I'd scored and 7-8/9 on the Beighton hypermobility scale, a nine point scale used for diagnosing hypermobility disorders. She took one look at me and said that yes, I am hyper mobile. That day, to my memory we did an x-ray and I went up to have blood drawn at the lab upstairs. At the next appointment, about a month later, we went over the results that showed absolutely nothing and made an appointment for the MRI, after this appointment I went to make one for the next time but was told not to worry about it and they would call us when they had my MRI results. We trusted that and went in a week or so later for my MRI. I had the MRI last fall and we waited until February to call and make the appointment, having trusted that they would have called us, which they did not. Which loops us right back up to last Friday.

I want to thank all of you who made it this far in reading this. I understand it's longer than my other chapters but I had to both get this off my chest and felt like you all deserved an update. Most of my time right now is spent fighting with the healthcare system in America and trying to get a job since I won't be going off to college until fall 2023 because of my gap year. Thanks for listening to my ramblings and I hope your days are better than mine.