Posts tagged personal

1. What are you diagnosed with? 

Ehlers-Danlos Syndrome, Rheumatoid Arthritis/Autoimmune Connective Tissue Disease, Dysautonomia, Mast Cell Activation Disorder, Chiari Malformation and Craniocervical Instability, Tethered Cord Syndrome, Severe Vision Impairment, Bipolar Disorder, Asperger Syndrome (and little doodads from the above)

2. What has this illness taken away from you?

My independence, hopes, dreams, life, future, friends, family, opportunities, comfort, relationships, sanity…the ability to make comprehensive lists :P

3. What are 3 positive things this illness has brought you?

People who love me despite my shortcomings, a better appreciation for life, a greater capacity to help others

4. Did you have to change any goals you had because of this illness? Are you happy with those changes?

I was lucky enough to be able to finish a bachelors degree but not in the subject I wanted (I opted for library science instead of French) but I still wanted to get to France for my masters degree but that’s not happening.  I wanted to go to medical school or be a translator but I wound up on disability at age 21.  I’m not happy with these changes in the slightest but I still have to accept them because the alternative is NOT the way out.

5. What is your favorite quote?

My friend Blaze wrote this once: “Perhaps we are like race horses - one of the old traditions was to ‘handicap’ the greatest horses so that they would not run away from the pack. They would pile on lead weights, whatever was needed to get up to the amount of weight the handicapper said they should carry. We’re handicapped because otherwise the world could not keep up with us. “

6. What things do you do when you are not feeling well to help keep your mind off of the pain?

Listen to music, pet a dog, play with my dolls, watch Law and Order SVU, look at pictures, play a game, hang out with friends, eat ice cream, cry, read if permissible

7. Are you in remission?

EDS doesn’t have remission…there are times when it’s better than others.  The mental health stuff is much better than it used to be and I don’t need all the intensive therapies anymore but I do still need meds.  The Dysautonomia is better in the winter.  My arthritis is flaring up right now and the mast cell disease is much better this week but there hasn’t been a remission from that either.  Basically sometimes things are better than other times.

8. Do you have a good support system to help you through?

I have a really great Internet support system and my mom’s spiffy…but she now lives an hour away from me.  I feel I’m really lacking an in person support system and that’s been hitting me hard because I had a pretty solid one when I was in college and still living on campus.  I’ve been housebound recently which is causing depression to rear its ugly face.  My doctors where I lived last were great and I’m having to start over (abeit slowly) with that which causes me a ton of anxiety but I can’t keep traveling hours for appointments.

9. How do others react when they hear what your diagnosis is? Do they know about your illness?

Most people have not heard of EDS…they’ve heard of autism/bipolar/RA but not so much the mast cell disorder, the Dysautonomia and the structural problems with my spine.  People either think I’m exaggerating or that I’ll die if they touch me.

10. Have you ever been judged by your illness?

Every fucking day by someone…even by myself.

11. Have you ever been told, “But, you don’t look sick”?

I used to but now I can’t walk far without something to hold on to and I wear a plethora of braces just to get through the day and night safely.  People don’t assume my vision is as bad as it is because I’ve never walked with a white cane (although I do use my forearm crutches in that regard sometimes)  There are days I have to use a wheelchair.  What is tough though is how my needs change from day to day and I find that to be the hardest thing to explain.

12. What is your favorite song to listen to in order to get you in a better mood?

Right now it’s “One More” by Superchick…if I want something funny, “Wet Dream” by Dr. Demento is giggle worthy.

13. Do you have something special that you carry around to help you reflect and get you through tough times?

One of my ball jointed dolls named Macchiato…she’s five inches and travels in a little eyeglass case :D

14. What is your “comfort food”?

ICE CREAM.

15. Imagine there was a cure for your illness, what is the first thing you would do/say?

Cry.  I would think it was a cruel joke.

16. If you had an entire day with NO pain, what would you do?

Go for a jog in the woods and probably go to work for my mom :)

17. Do you think making jokes/laughing about your illness has helped cope with it at times?

Definitely…I can’t be serious all the time with this…I’d suffocate.

18. What are some things you do for fun?

I collect dolls and I like making jewelry for them and taking photographs.  When I was living with my parents I’d hang out with our five dogs.  I watch TV quite a bit now especially police shows like NCIS and Law and Order.  I also enjoy reading and surfing on the Internet.

19. Since being diagnosed, have you done anything for the cause (walks, etc.)?

I did the Arthritis Walk one year and was on the committee with my mom.  I’ve worked with Ehlers-Danlos Network CARES and used to be a member of DYNA.  This past summer I got to go to the EDNF National Conference which was really cool.  I try to raise awareness via my blog and on Facebook.  I’ve used Macchiato to raise awareness as well!

20. What is a word of advice you can give others who are chronically ill?

When you’re first diagnosed it really does feel like your world is over and that you’re not a person anymore.  But over time you’ll find yourself again, I promise.

Sometime last week my WiFi decided to crap out on us…my roomie’s hardwired computer was still operational but I really didn’t want to run Tumblr on it.  Of course, it died when I was stuck in bed/recliner with a swollen tailbone, then an injured wrist and a bunch of other shit :/.  But I’m back online and I’m so incredibly grateful.

About two months ago I moved into an independent living community for people w/physical disabilities and I really do like it here even though I miss my mom and my dogs.  It’s much calmer here which I totally appreciate.  Suckish thing is, I can’t go out much because I have a manual wheelchair and I can’t wheel myself without dislocating my shoulders/hands/wrists and getting a powerchair takes MONTHS.  I fill my days with the computer, Law and Order, and books and crafts when I’m up to it.  I still putz around with the dolls but not as much as I did when I was living at home.

I’m really not sure what else to say…so I’ll end this for now.  If you want to know something, just put it in my Ask.

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.