Haven't updated this blog in 6 and a half years - wow! I graduated with my RN bachelors degree in 2012. I currently work doing home health care for SCI parients. It's been amazing. The most difficult part has been doing PT exercises with them - my upper back and wrists especially. I have injured myself several times. I'll gladly update more if anyone is still interested in my life journey!

Wow, I'm actually updating! Life has been rather difficult. I don't go for long walks anymore like I used to. I'm just.. not able to. There is too much pain in my knees. I feel like an old lady some days, and what makes it even worse is that the other students are all about 4 years younger than I am. I'll be graduating college 2 years late.

To anyone who sees this entry: Do you know about where I can find information on EDS and pregnancy?

Still haven't gotten the results of the echo back yet.

Later today I meet with a Boston geneticist who's known for his work with EDS, or so I hear. My PCP referred me to him so quickly - she actually had recognized the EDS symptoms & signs before I had even said a word to her about it!

I feel so scared, and yet almost elated to finally be able to get diagnosed with a type of EDS. I strive for the definitive in life.

I've had my wrist/arm in a brace for three days - I must have injured it while using a wire cutter. Oops. At least it doesn't hurt as much, though.

I am officially signed up for all my classes in order to return to school! You better believe I'm not giving up.

My back hurts so much today. I've been feeling like I want to just let myself slump even further than usual - and rest my head in my own lap. I feel so stupid saying this for some reason.

Tomorrow I have my echocardiogram to find out if my heart is affected by EDS.

I feel so lonely, and I'm tired of having to explain what EDS is to everyone. I think I might join that Boston group of people with Ehlers-Danlos. I hear there are only three members so far, but I really haven't heard anything about it other than that.

Meh, my gums hurt on the right side of my mouth. Maybe I should go floss and rinse with salt water..

Today, my fingers, knees, and especially elbows are absolutely killing me. Yesterday I went to my PCP and was showing her how my flexibility has increased (I never do this normally, mind you, because it stretches out my muscles so much and the last thing I need is to be more flexible). Even my jaw hurts and is cracking, but I don't really have an explanation for that one.

Next Tuesday, I'm getting my first Echo, and so will hopefully find out if I have any heart anomalies or issues pertaining to EDS.

I'm glad that doctors and my own parents are finally taking this seriously. It's scary feeling like you have no grip (literally) anymore. I have trouble opening bottles, writing (oh the hand cramps!), and twisting and pulling in general. Even opening a tupperware container is difficult, and sometimes I can't do it at all. I hate asking for help; I feel like my mom sees it as me being 'weak.'

It's absolutely dismal outside; dark and dreary and wet. I feel like just going to sleep, but I won't. I have more appointments to make and little animals to play with.

Well, as of right now, I am taking time off from school. I'm trying to get a job anywhere as a CNA (certified nursing assistant), but I'm having very little luck in getting interviews. I decided to start a public blog in hopes of helping to raise awareness for EDS as well as to connect to others who can relate. :)

RNs with EDS forum topic on ednf.org