Senior Year

It is finally here. The year I have been waiting for. My final year before I can get out of this too big yet too small town. I've been waiting all my life to get out and make my life into something more, with passion and full of everything I love.

Yet before school even starts tomorrow I am scared. Completely terrified.

Last year was rough. I was sick every day, missing classes, sad all the time, and having a hard time keeping up with myself. Since the end of the school year things have gotten better. I got new friends, new medicines, new everything that have been making me feel better. School has always been an adjustment. In summer I can go days of doing heavy activity and then pull back and rest at my own pace because of EDS and POTS. At school I cannot do that. I have to get up everyday and go no matter how bad everything is. With the occasional sick days, its really hard. I am so scared how my body is going to take being thrown back into school. I am so scared its going to destroy me. I should not have to worry about these things, yet here I am.

Brace advice?

I need to get wrist braces to sleep with on. When I wake up my hands are always in horrible positions and it makes them hurt a lot so my OT suggested wrist braces. I've been looking at cheap ones at CVS but I don't know exactly what to look for. I want something comfy but with support since I will be sleeping with them on (I don't want something uncomfortable that I'm going to hate having on).

Anyone have any suggestions or have any brands I should look into?

Rough Week

I'm having a rough week. I can't do anything about it. I have had all this stuff that needs to be done and working extra hard to get it done but its just all crazy. I'm done all my summer homework except for reading and outlining. I have work. I have this thing I am running for school which has taken up all my attention this week, last week, the week before, etc. The last two days especially I have been on my feet moving all day. Its really hard. Its even harder to see these other people around me doing it just fine.

Its just all too much. My shoulders are falling apart, my back is as bad as ever, and my legs I don't even talk about them anymore. PT isn't helping. I don't feel any stronger. Its just not even fair or right. I have no idea how my body is going to take being back in school in a week and a half.

And I get my wisdom teeth out wednesday...yippie.

weight weight weight weight

All my life I've struggled with weight. I can fluctuate like 10 sometimes more pounds a day. I go through periods of time when I am underweight and really unhealthy. Whether my stomachs acting up, I have no fluid, or I'm getting really sick every day from low blood pressure my weight can drop very fast and for long periods of times. At other times my medicine makes me hungry constantly, everything seems alright, and suddenly I am on the heavy side. There is no in between, there is no feeling good about myself. Its always too much or too little, and it drives me crazy. How can you accept yourself and be happy if its so easy to pick out your flaws? When you add chronic pain, chronic illnesses, and health complications, it makes the struggle even harder. Last year I was in such a bad place with my health I wasn't eating and sad all the time because I would just get sick and everyone thought I had an eating disorder because I was so underweight. It is so easy to be judged, even when people have NO idea what really is going on. Now I am eating and a lot healthier than I have been in a while but I can't help but be unhappy as a teenager struggling with body issues and not feeling good about myself.  Now I know I am not fat, but I am not skinny either. Its just hard to feel good. Its a back and forth never ending tug of war. Trying so hard to be happy with who I am.

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.