D.I.Y. Management of E.D.S.
1.) Put your big girl panties on and deal with it. Two words: Lethal Weapon.
2.) Keep a “Dislocation Survival Kit” with you at all times. It should contain a sling, ace bandages of various sizes, instant cold packs, and duct tape (for stubborn limbs that won’t stay where you put them).
3.) When traveling by airplane, consider bringing a carry-on physician with you. This ensures that any in-flight mishaps will not result in the embarrassing “Is there a doctor on board the plane?” announcement; you can simply tell the flight attendant, “No thanks, I brought my own.” An added benefit of this arrangement is that you can be sure the doctor will not make any silly recommendations to the pilot, such as landing the plane at the closest airport--which would earn you death threats from your fellow passengers.
4.) Unless you have an ambulance fetish, $1500 you really need to get rid of *, or you really need an ambulance (i.e., both arms and both legs are dislocated and you were absent the day they taught limbless driving in driver's ed), prevent bewildered bystanders from calling 911 at all costs. Use bribery, lies, begging, crying, or any combination thereof to get them to put away their cell phones.
5.) If you fail at the above, or if someone calls 911 without your knowledge (jerks), do not despair. Deny, deny, deny. (e.g., “Dislocated knee? What dislocated knee? Who me? Nooooo, I always walk like this. . .") Sign anything the paramedics want if it will keep you out of their ambulance.
6.) Always know the location of the nearest ER so that it won’t be necessary to approach a total stranger to ask for directions with one of your limbs hanging out of its socket. It tends to disturb people, and could lead to them calling 911 on you.
7.) Practice driving exclusively with one arm and perfect the technique of driving with your left leg so as to reduce the chances of being pulled over to take a sobriety test while driving yourself to the ER.
8.) If you had just followed the advice in #1, you would have saved yourself a lot of trouble.
Please note this is in fact a substitute for medical advice**. Do not consult your physician because he/she has probably never even heard of EDS, and will likely conduct him/herself in a dishonest, incompetent, and unprofessional manner.
*I can help you with that
**No it's not. I lied. By all means consult your physician; I don't feel like being sued.
Posted by Girl, Dislocated at 10:24
10 Comments:
your blog is terrific. after reading it and then looking back at the eggs, i laughed my ass off.
all the best to you, luck too.
zonko.
By 
, at
20:37
Thanks, Zonko! :)
By 
Girl, Dislocated, at
04:01
Amazing blog with complete honesty yet that lovely twist of humor that keeps people like us going. I love it.
Ever hear the constant, "you need to get over this" or the inevitable, "let it go"? Those are statements I could do without...
By Cat, at
19:09
That's so incredibly nice of you to say :)
Yes I do hear those lovely pieces of advice: "you need to get over this," "let it go," and many other variations that expose those people's ignorance. Wouldn't you love the tables to be turned for a day to see how good they are at "letting it go" or "getting over it"?
By Girl, Dislocated, at
08:05
I am so glad that a friend told me about your blog.
I really needed to have someone who understands what this is like.
You explain our plight with such humor while still being honest.
Thank you!
My brother died almost 11 years ago from an aortic dissection (I think they called it). David had no idea he had this and neither did we - no one did. An autopsy was done to determine the cause of death and the results were a connective tissue disorder like Marfan Syndrom. None of us knew what was going on or that my kids and I would soon have his same diagnosis.
I have since seen many geneticists and doctors so I know what you mean by blank stares and denial... . My geneticists tell me what to expect so I think "Cool, at least I know that much and what to avoid... . Then an issue will come up - I go to a doctor and they say "Who told you..." and "It's all in your head..." and so on.
I had a mini stroke a few years ago and couldn't even get the ER to check anything UNTIL I told them about my brother. Then all they checked was my heart. It wasn't until about a month later, while I was at the Cleveland Clinic, that a doctor there said that It seemed like I may have had a mini stroke, but without the proper tests *that were not done* he couldn't write it up that way.
So now, I have a slight stutter and slurring and I walk crooked and I know some people think I'm just tipsy or something.
My right foot is flat now after a very painfull year of "falling" and now my left one is following suit. My hands are becoming more and more useless + all of the "normal" aches and pains from this crazy disorder.
My son doesn't have the dislocations and other aches and pains that my oldest daughter and I have. He has more signs of these disorders than my brother did, but not the pain.
My oldest daughter and I fall and hurt ourselves all the time. It has almost become a joke to us. After a fall, we all say "I'm okay!"
My youngest daughter so far is only loose jointed, but not severe enough to do any damage yet.
It is very odd. All the research says that you can't have 2 disorders like this in the family, but my brother and my son seem like Marfans and my girls and I seem more like EDS.
Sorry to have gone on Soooooo long, but it feels good knowing that the reader (you) know what in the world I'm talking about.
Thanks again,
Diana
By Diana, at
13:48
Where did you get your ID bracelet with the brief explaination of EDS?
I'd like to get a few.
Diana
By Diana, at
13:55
I have never actually "met" anyone else with EDS! In fact, after 36 years on the planet I still find myself having to explain what EDS is to doctors! I like the title of your blog ... I spent most of my teen years and twenties in a similar state of dislocation. Cheers to you!
By Solanaceae, at
19:44
I've never met anyone with EDS either. Same deal with the doctors too. I really want to know what's normal for this disease. Basically all I know is pain and flexibility that make's one look freakish. I'm addicted to Aleve and I spend most of my time horizontal. I'd like to get to know people who can understand me more then myself (aka someone who knows a bit about and has eds) Up until about a year or so ago I thought i was normal to be able to bend most your joints backward. So anyone who would be willing to talk to me send me an email. Becky60126@yahoo.com
Just so I'm not some random stranger: I'm an 18 year old girl living in Illinois. I'm also an art freak. http://psycosinger.deviantart.com/
By becky, at
17:21
Girl... your day has made my year. I have suffered from EDS for a long time... and I have to say your attitude and wit are something I really enjoy. I too have learned to laugh at my problems... and yes I have gone Mel Gibson on my shoulder in a night club to pop it back in much to my friends horror. I have only had 3 surgeries thus far, but the list of painkillers and other meds goes on and on. Thank god for a great rheumatologist! I just wanted to thank you so much for sharing our daily trials with the world... and I look forward to reading it all! ~Christa
By Christa, at
01:10
thank you so much for making me laugh until i hurt (and perhaps popped a rib!) - this post was amazing. :) nice to meet you. i have eds type 3 and blog about it too, please check me out if you have a chance: danielledavisEDS.blogspot.com
have a great day and keep up the humor - it helps all of us! xoxo dani
By Vegan Danielle Davis, at
16:36
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