So my name is Emily and I am 17 years old. I have two chronic illnesses that go hand and hand with each other, EDS and POTS. For as long as I can remember I have had problems with getting hurt all the time, with my stomach, and just being sick a lot. In October 2008 I messed up my hip and it started causing me really bad pain around the clock. I tried PT many times, medicine, injections, and nothing helped the pain. In March 2011 I got surgery to correct FAI, which is pinching of the misshapen hip socket. I spent a week at CHOP recovering and 2 months out of my freshmen year of high school recovering. When I finally was feeling better with my hip, my knees and back started bothering me a lot. My knee doctor told me I had hyper-mobility and that was probably why I was having trouble with my joints. When I talked to my physical therapist about it he put together my other symptoms of stomach, weakness, migraines, and dizziness and told me about Ehlers-Danlos Syndrome. I scheduled an appointment to meet with a metabolic clinic that specialized in EDS at CHOP and after long months of waiting for the appointment, I was diagnosed with it on December 5th 2012. That day I also got to meet Ed Sheeran at the Ryan Seacrest Foundation at CHOP. Bad news came with the meeting of my music love/idol/hero. I was recommended to see an OT and PT at chop and a cardiologist.
OT & PT got me set up with home programs and adjustments with everyday life such as sleeping, being able to type at school among other things. The cardiologist diagnosed me with POTS and soon became my regular doctor who has helped me in so many ways. After a POTS flareup I was put on something for blood pressure and it fixed problems I didn't even realize were there. I'm being treated for my stomach, migraines, and low blood pressure and overall have been feeling better than I have been in a long time. I am still working on dealing with all the pain and problems that come with EDS and POTS but I am in PT again and weighing pain control medicine as an option.
Right now I am trying to juggle being a high school student, teenager, and applying to colleges while waking up everyday feeling different and not sure what the day has in store for me. I created this blog to let out my feelings because some time its really hard to handle everything. I'd keep a diary, but yeah writing hurts a lot. Plus hopefully I can meet some fellow friends dealing with the same things I am.
I understand the uncertainty of disease. It is never a fun or predictable thing.
ReplyDeleteThanks for checking out my blog, I'll certainly be stopping by here to see how you're doing!
Feel free to follow me on twitter: @chronicbeauty12 :)
Yeah definitely not fun or predictable. I think I just followed you the other day, mine is @emksky. Thanks for commenting!
DeleteHi Emily, thanks for stopping by my blog :) I can totally relate to everything you've written here and it's good to know sometimes that it's not just me feeling like this. Take care xx
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