30 August 2018

Life/Health Update (Summer 2018)

Sorry for the long hiatus! It's been a busy summer between working and doctors' appointments. Here's a little update on where I've been and what's changed for ...

Hey so I probably should have,um, made this sooner. *clears throat* I had I got a new camera and then

I... um, I guess I messed something up. I don't know what I did with the camera that was wrong... But it was wrong and I can't figure out how to use it and then I never posted the video that I did, that I took back in like July and then I got more updates so um I guess what I'm trying to say is, Hi! Sorry it's been a while I have a lot of ideas and things I want to do and I just haven't gotten around to filming any of them but what I really wanted to say is... so this is a bit about like life update health update Um...You can see I'm sunburned Um, so I'm back at school so I'm like my room you know is a little different but I'm really glad to be back I really love my school my friends so my first week of classes is just now finishing up, um, and it's really good to be back it's been really hot but it's summer my heat intolerance has been getting worse but anyway I wanted to back up to - so in July I was diagnosed... I went to go see a geneticist, a new geneticist because the one I had seen, um I just wanted to get a second opinion and the.. you know the one I had seen, um, a couple other people in the community had had bad experiences with her too and she's pretty dismissive, um, but anyway so I went to go to a new geneticist to get a second opinion because, um, for my hypermobility and all my pain and whatever issues, um, to figure that out so I went and so I was formally diagnosed with um, benign joint hypermobility spectrum disorder which is a bit of a misleading, um, name because it makes it seem like there's nothing wrong with you but it's, it..benign... I looked it up because um I was confused how could it be benign joint hypermobility spectrum when the doctor also said that, um, so you know like for the spectrum there's like there's on the end of the spectrum is

Ehlers Danlos hypermobility type and there, but there's like this like space that's a little gray right now with diagnostic criteria where there's a lot of overlap between that hypermobility, hypermobility type ehlers-danlos,um and joint hypermobility spectrum disorder and I'm in that sort of grey space and the doctor said that in my case to treat it as if it was hypermobile EDS, um and that just with all of the other, um like parts of my systems that are involved and like my histories, um, and all of that it just it it very much seems like that but because I don't quite meet enough of the minor criteria I believe. I'm not entirely sure. I have the hypermobility spectrum disorder diagnosis and it's interesting because we got she wanted to genetic testing to rule out vascular EDS, um, before I get my top surgery done, um, and what was interesting is, um I didn't have any of the genetic mutations that they were worried about but I did have one, um, of unknown significance, um, the.. I forget the name of the gene The COL1AF I believe it's called, um, it's the one that's associated with classical EDS um, and it has, um, it's the type 5 collagen, um except for my mutation is, um, unknown so they're not sure if it's symptomatic or not at this point, uh, with that so that was interesting and I wasn't really expecting that so hopefully in the future as more research is done more and more and more is known about EDS maybe we'll find out more about that but it was just something that was you know huh that's interesting I wasn't really expecting that another thing is I had um we went um I finally got to go see I we drove two hours to go see a cardiologist who specializes

in fainting and Dysautonomia and I.. have, I've had basically a working diagnosis of POTS with my primary care and different ER docs and the hospital docs when I stayed overnight basically saying that my symptoms and, um, history points to POTS um I had never been had never been formally diagnosed um until this August I went to go see a doctor that specializes and he didn't even order a tilt table he just took my sitting and standing and laying down heart rate and it changed enough just in that that he said yeah this is POTS also with my history and because I have my Fitbit and I've been able to keep track of my heart rate just looking at my patterns it's like points to it um the funny thing is of course the one, the one day that your symptoms aren't so bad and your heart rate doesn't jump super high when you stand up is the day you go see the doctor I mean to be fair I had ended up in the at Urgent Care that weekend to get fluids so I was feeling a little better that week but it was just like it didn't jump as high as it usually does, my heart rate, which is good but also like *sighs* because you're at the doctor and you want it to do the symptoms for once but anyway I still got a diagnosis and he put me on Midodrine so for the past few weeks I've been taking five milligrams of Midodrine usually three times a day unless I'm just going to be sitting all day and then I don't have to take it as much really because I mean it's it raises your blood pressure which hopefully helps with POTS and it has been helping a, mostly somewhat um you know I still have been falling I have recently been having an issue where I fall worse that I had been, usually I collapse onto my knees but more and more I've been having like where I fall more flat and I've now had three falls where I've hit my face including one last night I um and and it's it's scary um and I'm concerned about it but I'll see where my journey goes he also wants me to start on the Levine protocol but I'm working with my physical therapists to make sure that we get on a program that is

okay with my um hypermobility spectrum disorder as well because we don't want to accidentally hurt something trying to fix something else and once it gets cooler I'll start wearing um compression socks I didn't realize I really had blood pooling I just I I because I didn't think I had it cuz I don't know cuz I've seen like pictures and heard and about stuff and I guess I do I'm just really pale so like my sunburn because you can see that like the transition from this to this you can see that I'm sunburned but when I'm sunburned I usually don't turn so red so I guess maybe I didn't notice it and he said I had a little bit of blue in my legs um so that was interesting to find out like that's actually a thing and my blood pressure had actually dropped a little bit when I stood up which I didn't think it did and again and I don't know these things that you find out and you're like huh um and what else Oh also the geneticist wanted wanted me to go see a genetic eye doctor because I wear bifocals I don't know if you can see that line and I knew that it wasn't super common for people my age to um need them um but I I have myopia pretty badly um but which is nearsightedness but I um also have started to become a little bit farsighted and I'm young enough that I guess that was a weirder than I thought it was um so I have an appointment set up in November to um talk to that specialist also I'm getting custom orthotics for my feet because I found out they're too wide in the front and like I... wide in the front and they're really short in the back so hopefully that'll help with um walking and pain and maybe my gait will be a little bit better I also just got my SI belt yesterday I started using it in physical therapy the other day um the other week and it's really great um I didn't realize how far my hips went out when I

walked until I started using this or just putting it on I could feel like keeping my hips in place and my legs don't turn in as much um which is a great feeling um I started using a cane over the summer and I recently decorated it with zebra tape and I'm gonna do a little bit more when I get a chance I'll share it with everybody when I'm done uh my GI symptoms have been getting worse which has been a little scary um I have really sharp belly pain nausea and I haven't been able to eat as much um like I'll like get full sooner or I won't be hungry enough to really want to eat and I have to force myself to eat and it's been getting worse I ended up in the emergency room for that a couple months ago I realize I had just been ignoring it um so that was a little something so I have to go back to see the GI doctor ina few weeks I had an endoscopy done and luckily that came back normal I just feel like my life is a lot of doctor's appointments but there's other things in my life um I'm gonna start the process of getting a service dog it'll be really I know it's a long process but my doctor was super onboard with it I love my primary care physician I am so lucky to have some so understanding for that but ow my jaw keeps popping and so it's been a really full summer with all the doctors and diagnoses and just answers like I went seven years with POTS symptoms the first symptoms started when I was in sixth grade uh I'm a soph (cut off) I just started my sophomore year of college um that's a long time to go without a diagnosis I saw a cardiologist who told me POTS didn't exist at at CHOP Children's Hospital of Philadelphia so at that point it was like well this doc doesn't think there's anything wrong there's not we shouldn't worry but it's just so good to

have words to put to things and then I know some diagnoses might change or new information will come out or my symptoms will get better or worse but for now it's really really good to be able to say for sure this is what's going on with me and this is what I need um so yeah thanks for being patient with me hopefully I'll get more stuff filmed in the future faster I really need to get more in the habit of it but that's it for now bye