Need Some Hope.

People don't know what its like to be chronically sick. They don't know what its like to work so hard to fix just one part of you, while ten more parts fall apart in the mean time. Its so hard and i'm losing motivation and hope. I feel like I cannot confide in any of my friends and nobody would want to listen to me anyway. I feel like I am in such a bad place right now. I can't deal with this high school crap, its just too much on top of struggling to function.

On top of that, my shoulders have been really bad for about three weeks now. This past weekend I got nerve like pain, kinda like what comes from my low back and goes down my legs, but instead it was down my right arm. I couldn't even grip a pencil it hurt so bad and felt numb. I almost went to the ER because I was at my limit of pain and I thought something was really wrong. It was so bad. I am feeling it again tonight. I just don't know how to react or what to do anymore.

PT, life, etc

Today at PT my therapist talked to me about how I am not getting any stronger at all after over a month going three times a week and I am not in any less pain (in fact more). Thanks for that.

Everything is falling apart.

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.

How Do You Deal With Overactivity?

So some weeks everything in life just comes on at once. This week for instance I went to Hershey Park and a concert. 10 hours standing and walking around a park, and 5 hours walking around the concert venue plus the concert is exhausting for a so called "normal" person. When you add chronic disorders on top of it, it really becomes down right impossible. I somehow did it all and enjoyed it, which is amazing, but the problem is really becoming how do i do things like this? I am trying to get in shape with PT, but while shape can get rid of muscular pain, the underlying pain does not go away. It really is frustrating not being able to do what everyone else can and not having the ability to bounce back from big days.

With school approaching it really is becoming worrying. In the summer you get to lay around and do everything. I have no idea how I am going to adjust to this new school year starting. I really want it to be great, especially being my senior year. I've been debating starting medicine for pain (cymbalta) but I really don't know how well that will work and I am against it at the moment. I should not have to worry about something like sitting and walking around school, but yet here I am.

I really wish there was an easy way to do this. I really wish it wasn't so hard. I am trying to stay positive but just the idea of it coming makes me anxious. Shouldn't be this hard to do something out of the ordinary. Just trying to deal and be happy.

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.