The first post is always the hardest (and the longest)

The first post to a blog reminds me a lot of your first kiss. No matter what you do, it's never going to feel right and it will never feel quite right, but it's a necessary evil.

Right now, I'm excited about it. I'm in the pre-kiss stage. I'm working on redoing everything: new blog, new Instagram name. I chose the name because it's what I want to embody. A fighter. An athlete. Healthy choices. Alive. Living. I'm no longer looking for a diagnosis. I have a diagnosis. The hardest part is accepting that it is never going away. In fact, it may only get worse. This may be the best I ever get. I need to stop waiting for things to end and start living again.

My story

For as long as I can remember, it's always been something with me. I used to complain, but I quickly learned that no one wanted to hear it. I took that as a sign that the pain I felt was completely normal and I was a complainer or a wuss.

As a baby, I was born blue. Sleep apnea. I spent the first two weeks of my life in the hospital. Then came asthma and allergies. Other than that, I was fine. Right?

I remember often rolling my ankles or randomly hurting myself. The injury was either in my head or I was just a klutz. I've always has those hilarious fingers that look like they are flying away. I was always double jointed and could do weird tricks. My knees always bent backwards. I always rocked at the flexibility part of any fitness test. What could be wrong?

As a kid, I was always a perfectionist. I had trichotillomania. I was sometimes depressed and even a self injurer. I was an anxious kid that was always on edge. Dramatic, worry wort, shy, clumsy, awkward, you name it.

I want to say that my first time really subluxing a joint was in Drill Team in high school. I swore on everything that I dislocated my hip. I remember something popping and me popping it back in. I told my mom and she brought me home crutches. Again, just suck it up. More than likely I was being ridiculous or a drama queen. It was probably just me overreacting, like always.

I went on like anyone else would. I pushed through high school, college, graduate school. I got sick a lot, but I figured that was normal. I gained weight easily because working out literally hurt. I slept a lot, but that was because I was fat and lazy. I had my body quirks--shoulders that popped out, wrists that always hurt, ankles that always rolled. This was all normal, right?

I moved to Alaska for college. Things started drastically change.

While in college, I was also in a few really bad car accidents. First I was hit by a suburban while biking on my awesome pink bike. About a year later, my friend ran a red light and I face planted into the windshield with my face and my shoulder (if you look carefully, that is my faceprint on the windshield). I hated going to the hospital and physical therapy. One PT told me that my hips just wouldn't stay put. I was also diagnosed with TMJ and myofascial pain syndrome. I was told my neck didn't stay put either. I had a small tear in my shoulder but that couldn't be causing the amount of pain I was in. I also broke a few toes over the time. I just wrapped them and moved on. I fractured my radius. Ace bandage and move on. I was determined not to be a wuss or a complainer. Just move on.

So I moved to DC for graduate school.

In graduate school, I was diagnosed with diverticulosis. I was hospitalized with diverticulitis for two weeks. In the hospital, I has a weird flare up of just immense pain. Couldn't treat it, couldn't figure it out. The hospital gave up. Maybe I was drug seeking or just afraid to go home. No big deal.

In April 2014, while getting my second graduate degree, I hit a tree with my bike while on the Mount Vernon Trail. Apparently they don't get out of your way. Once again, just a slightly separated shoulder. No big deal. The doctors couldn't understand why I hurt so much. I went back to work the next day, but something felt wrong. I didn't feel like myself anymore.

As time went on, nothing changed. I pushed on a put on a happy face, but inside I was dying. The pain wouldn't go away. It just felt like everything had changed overnight. I was exhausted all the time. I still worked out like crazy and pushed through, but something was wrong.

I started noticing little things. When I was lifting weights, I has to wear so many braces or else I swore things were becoming dislocated. I could no longer type for hours or else I was in insane amounts of pain. I tried to ignore it, but it started affecting my work, my life in general. I started hermitting, missing out of social situations and started sleeping more.

Eventually in November I lost my job. I was told it was because of my lack of productivity at work. I was immediately hired by my school to be a teaching assistant. In January I started that job, but something became really really wrong.

I fell ill and I fell ill quickly. Suddenly I wasn't able to eat. The pain was exponential. I pain was pinpointed. I honestly thought I was dying.

My first hospital stay resulted in no progress. They couldn't find a reason for the pain. They also couldn't control it. Once again, they thought I might be pain seeking.

The second hospital stay was worse. The internist decided I was depressed, anxious, and fat. She dismissed everything I said.

I immediately got an amazing PCP. He was determined to figure out what was going on and immediately started me on pain control. In March 2015 I started a blog while I was searching for a diagnosis.

For moments, brief windows of time, I would catch glimpses of who I used to be; flickers of the me that is fighting so deep inside. I get these momentary bursts of how life was before getting sick, smiles and laughter, hard work and accomplishments. These moments seem so much more cruel when followed by utter exhaustion from something as simple as doing dishes. Will I ever recover? Will that happy, productive me ever come back? I keep holding on to hope, but my grip is starting to fail.

All the tests kept coming back negative. Everything was going nowhere. 

And then we looked outside the box.

We looked at my joints. At my knees. At my fingers. I simply asked if this was normal, and bent my pinkie back. Suddenly we were looking for Ehlers Danlos Syndrome specialists. Suddenly we had a possible diagnosis. 

Fast forward to countless specialists. So many recent injuries. My wrists. I fainted and hit my face on the bathroom counter. My knee was hurt by a doctor wanting to see just how hypermobile it was. And I'm still trucking. 

The diagnosis? The list is still growing. So far it's Ehlers Danlos Syndrome, Fibromyalgia, TMJ, Diverticulosis. Possibly POTS/dysautonomia. Possible Chiari Malformation. 

I have an appointment on Monday, June 8 for a Cardio for the POTS. An appointment in July for the Chiari. We're still waiting on the genetic test to determine which type of EDS. We're also planning a sleep study. Everything is falling into place.

I, so far, have let everything control me. 

No more. 

This is my new start. This is the new me. I am learning to accept my EDS. I am learning to accept everything. 

It's just all so much. It's way too easy to stay down when you have a chronic illness. You have to accept that today may be the best you're ever going to be. It's not going to go away. It may never even lessen. 

At some point you have to come to term with the simple fact that this is pervasive. It's forever. It very well be what kills you. At some point you wake up and realize you're not the person you were before and never will be. 

Honestly, the chronic pain and the painsomnia is really one of the hardest parts. With the chronic pain and the painsomnia comes unpredictableness. I miss my friends, a lot. I rarely go out. I rarely have the energy to do anything. I miss a lot of people in my life, but not everyone has made an effort to stay. 

To those who stopped calling me, please don't blame me for the lack of contact--the phone works both ways. I'm okay with not being a priority in your life. I'm okay that you have had to move on. It's okay. I wish you the best in your future endeavors. I know it's not your job to understand what I'm going through, nor do I expect you to, so I completely understand you giving up. And I'm telling you that it's okay. Sometimes people take different paths in life. Maybe it's our time to go different ways. 

To those who have stayed, to those who keep calling and keep inviting me to things, thank you. Please don't give up. I do miss you. I truly do. Please understand I have to be a priority in my life right now. I have to be selfish. I'm sorry I haven't been open and able to confide in you, this is something I needed (and still need) to go through this on my own. Please understand. If I can't go out, I can't. I have to listen to my body. Please don't think it's anything against you. Right now it just has to be about me.

To my new friends, thank you so much for your support. Though we're just online friends, you are really priceless in my life. Some of you have changed my life in ways you cannot even fathom. 

Finally, to my amazing boyfriend (who probably won't read this), thank you. You've been there the entire time. You've believed me the entire time. You go to the doctors. You hold my hand. You got angry when they didn't listen. You held me when I needed it. You pushed me when I needed it. I don't know if I would've been able to do this without you. Thank you for going out and becoming a personal trainer to help pay for the doctors. Thank you for understanding I haven't been able to work--and not questioning it. Thank you for understanding that some days I just can't sleep because it hurts or need to sleep countless hours. Thank you, so much, for helping me find happiness again. Thank you for being you. I appreciate you more than you will ever know. 

As for me, now I am trying to learn to be the positive person I pretend to be online. I'm trying to figure out what I'm trying to do. I'm trying to discover who this new person is. I'm trying to rediscover myself. The one thing I do know is I'm going to live life to it's fullest. I can't keep hiding and being scared of what these disorders may hold for me. 

It's time for me to live again. And the first thing I want to do is get to the gym and find that happiness I had before. I've even managed to do a full workout. I even went beyond the workout and threw in my favorite--the leg press. 

I'm going to get back to working out. I'm going to get back to martial arts. I'm going to bike. I'm going to hike. I'm going to kayak. I'm going to do the things I love. Maybe not everyday, but I'm going to at least do them. I'll leave it at the gym and find myself again. 

So today marks the birth of the EDS Athlete. 

She who will be stronger than EDS. 

Stronger than any disorder.

She who is strong enough to live.

Welcome to my blog.

Welcome to my new life.