Posts tagged Ehlers Danlos

Left shoulder

Left knee

Right sacroilliac/hip

Three fingers on my right hand

…and these aren’t even all the injuries I’ve had THIS WEEK.  This doesn’t even include my arthritis and carpal tunnel and…and…

I need better collagen.  Now.

I am a 24 year old with an unspecified type of EDS. I am totally disabled by it as well. I have had arthritis since I was nine, problems with allergies and nervous system function, Chiari and other neck/brain issues and a tethered spinal cord causing me symptoms similar to a spinal cord injury. My EDS also severely affects my eyes and I am legally blind. I was only diagnosed because I learned about EDS on the Internet…and after I was diagnosed, my mom and sister were diagnosed as well. I still fight with people and doctors regarding my condition and my EDS IS VERY VISIBLE. I can walk a bit but it’s unsteady and I wear braces on my ankles, knees, wrists, fingers and neck. When I am not in my wheelchair I must walk with crutches or a walker because of the spinal cord problems and lower body dislocations. I had to move into a community for physically disabled people and I am on Social Security while my friends start families and go to graduate school. Worst part is, my best friend died from some of the same EDS complications I have and she was only 22. I wish I could have her back but the best I can do is keep fighting for myself and for others. Don’t lose hope. ♥

Life goes on…I get up, take meds, go to appointments, hang out with friends, eat, sleep, do crafts and life is pretty even.

Then I find out that a kid I talk to, but am not particularly close with…might be flirting with the Grim Reaper again.  London has had bowel perforations and resections and never got to meet his mom because of EDS (she died in childbirth) and he’s now 16 and being flown to Shands with a possible tear in his aorta.

Why am I thinking of Alexa now?  It’s like that wound has been ripped right back open.

Is it not bad enough that we give up our lives, our mobility, our families, our independence…but have to give up our LIVES and the lives of the ones we love?

I have resigned myself to the fact years ago that if I have a vascular/organ tear that I’m pretty much a goner.  I was in the ER a year and a half ago after a simple fender bender that with my EDS left me with a neck injury.  The car was stopped and the car that hit us couldn’t have been going more than 20mph.  But I have subluxed vertebrae now and always will.

NO ONE in that ER that night knew what EDS was, let alone Chiari.  They only understood the Dysautonomia.  They were willing to learn about the EDS from me and my mom but I was conscious and my mom was there to validate my info.

BUT IF IT’S THE “OTHER THING”…I DON’T HAVE TIME.  WE DON’T HAVE TIME.

This scares the shit out of me on so many levels.  I hope London’s okay and I really like his aunt and he’s a good kid…

No more angels…PLEASE.

That moment when the hand that holds the toothbrush slips whilst you’re brushing your teeth and you manage to take off several layers of skin in your mouth and make it bleed.

I can’t possibly imagine how I should be beginning this post because frankly I should not have to write a post dedicated to someone who lost her life at only 22.

Today, six months ago, the world lost a truly beautiful person.  My friend Alexa suddenly passed away from secondary complications of Ehlers-Danlos Syndrome.  She had developed, over many years, severe Dysautonomia, Chiari, Pseudotumor Cerebrii and many other problems.  She had a shunt inserted to decrease her intercranial pressure which was working…she began to tell me that she wanted to enroll in college for the Spring of 2012.  A few weeks later she died of a blood clot in her lungs while recovering from another bout of bacterial meningitis.  Yes, I said again.

I met Lex five years ago through a Dysautonomia organization we later both got expelled from.  Meeting her was one of the few good things DYNA ever gave me.  I was intrigued by her intelligence and spunk and she saw me through family issues, dating drama, psych hospitalizations and a Chiari diagnosis.  She was one of the very few people I could be frank with about the fears I had about my EDS.  We both knew our lives could end at any moment from one of EDS’s many monsters.

Funny thing is, she always thought it would be me.

The night she died I was finishing up an essay for school…I had turned my phone off so I could finish my work and go to sleep…I’d worn my zebra shirt for a dinner with my sister.  The next morning I turned on my phone before I went off to school and there was a voicemail from her mother.  I couldn’t finish listening to it…I later did and her mom had a hard time even leaving the message.

I haven’t worn those clothes since.  For some reason I can’t.  I don’t know why.  I found a birthday card I almost threw away from two years ago while I was packing for my move.  I graduated from school and finally got an apartment.  I am doing things Lex is also supposed to be doing and sometimes I get this pain right in the middle of my chest because I miss her so much.

I wish I could tell her about the news exposure that EDS is starting to get…things that are more positive…that people are actually beginning to listen to us.  Hopefully, by hearing our stories, more doctors will become more educated about the dangers of EDS and its comorbidities and will be able to formulate treatment plans that result in a better LIFE for us.

I’ll never stop carrying Lex with me.  I will be telling her story until the day I die and probably after too.

I love you girl. ♥