EDS Bracelet

So a newer friend of mine who has EDS is a big advocate for EDS and did bracelet give aways during May. I recently met someone in person who is close with her at a concert and they wanted me to take a picture with the bracelet on for her website and the girl ended up just letting me keep the bracelet. I just really love it for some reason & now I never take it off.

PT & Work

So recently I started physical therapy AGAIN and I got a job. I am pumped for both and doing fairly well handling them the last two weeks. The first week was really hard with being really sore and being in a lot of pain, but this week I am feeling a little better and a little stronger. I am hoping that this trend will continue and I wont get any really bad joint flare ups that get in the way of my progress. I just want to feel better. I really need this strength too. I am getting way too weak and that is a problem. I also just want to get fit and feel good about myself. Physical therapy isn't a miracle worker but maybe it'll help. And working is giving me a good mental state. I like getting to work towards something. Yay for jobs. This is senior year starting and I am really trying my hardest to make it rock and to not fall apart. High hopes.

Here is to strength, whether in small or large quantities.. I am feeling it today.

My Life Up Until This Point

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.