EDS… KCCO


I was just on The Chive’s charity site filling in an application for help. I got stuck at the part where I had to show proof of my diagnosis and doctor info. Well my diagnosis is from one doctor, I have an orthopedic doctor, pain doctor and general practitioner. I can only use one doctor and some I haven’t seen for years!

I have this thing called Ehlers Danlos Syndrome. It affects people in many ways, but my hay is pain and hyper-mobility combined with severe fatigue. The connective tissues in my body don’t grow back. Joints dislocate daily and it does not feel good at all. That is me and I am gonna stop harping on it now.

I try not to ask for charity, but things are getting tough. At first I thought a cool therapy pool would work. Then I started thinking. The bane of my life… thought. I thought about how my room is a disaster area. I risk falling and dislocation a random joint every night to pee. Mom is going on 70 and taking care of her 45 years old son. Our house is falling apart because I can no longer work on it.

My father was a Vietnam vet, Purple Heart. We were lifers in the military. I joined up with the USAF, but my then unknown condition led me to an early medical release with a blown knee. These days, everything is blown.

I am in a good place right now, mom got me plane tickets to go visit home, Germany, in April and I couldn’t be happier. Who am I kidding? I spent ages 5-23 over there. I am ecstatic. I just hope my body holds up for this one last journey. I plan on having my first script finished when I return.

Reading all these inspirational letters on The Chive, seeing people set up gofundme.com accounts for people they don’t even know warms my soul. I read about a sick kid, reach for my wallet… only to remember, Government disability only pays me $635 a month.

I don’t want pity. I want a home, a safe hope. One where a 70-year-old doesn’t have to rake leaves. I want the pain to stop, it wont, but one of those hot-tub/swimming pools sounds like heaven. I am not asking for someone to start an indiegogo or gofundme page. I just wanna get out of bed once in a while, talk to mom and not worry about the house falling.

What is EDS?


I received a comment on my “Open letter” that asked some questions about my condition. So without Google to help, I am going to answer the questions from my perspective.

1. How does one contract the disease? Well it is genetic thing, a cool ass mutation like an X-man, that will make EDS‘rs the perfect space explorers. So no worries, it isn’t contagious.
2. What is the disease? It is a genetic defect that affects the connective tissues. Now that is not all, there are 3 types of EDS (Erhlers Danlos Syndrome). I have the hyper mobility/ vascular type that is 2 types blended. In my case the disease manifests as severe joint pain and major fatigue.
3. This is actually a summation.
I get very tired easily, mornings are the worst time of day. As far as treatment, well there is no cure. I rely on pain medication and warm soaks in a bath or hot tub. For myself, I have been advised to stay away from any high impact exercise. I try to get to the Y and use the exercises I learned in pool therapy. When I go out, I have a great pair of leg braces that keep me upright and able to go to events I might be covering. I also have a great support system at home, that is the best thing for anyone with EDS.

If you have anymore questions, feel free to ask.

Deadpool

Can the Mighty reddit help me?


 I am new here at reddit, so please forgive any flubs on my part. No really, PLEASE
Hello reddit. OK, baring myself to the world and ready for the backlash and/or trollish comments.
 Me= 42, went and grew up in Germany at 5 y/o as an Army BRAT, came back to America at 21.
 Got into the music scene, played in bands, joined the military. When I got out, I started working at strip clubs. DJ, Bartender and finally I was running the joint. I also developed a bad drug habit.
 Had a very bad trip, VERY bad, and went cold turkey. Moved back home and have been clean since 01/11/1997.
 In moving home, that meant being under moms roof. I worked odd jobs as telemarketer, sex shop clerk, gas station clerk and a few others. Things started to hurt as I became “clean”. I had major anxiety attacks and the pain in my joints became increased. I say increased because I found out I have Ehlers-Danlos Syndrome.
 I have had it all my life, and as a kid thought it was cool that I could dislocate my shoulders and bend my fingers backwards all the way. I was like Harry Houdini and would make $5 off all the kids I bet to “tie me up and I can get loose”.
 Now I look back. When I was young, it was new and funny. When I got older I was self medicating and now I am mostly bedridden, my computer and variety of craft and jewelry making materials on the shelves around me. All is not lost though.
 About 3 years ago, I sent out a plea to the internet about a Motley Crue show coming up. I wanted to go so bad as I thought I was beyond going to shows, but being a “disabled veteran” really does not pay as much as it should. Finally Seth Green heard my plea. I am also a former 501st Legion member, TB2942, but had to sell my armor for medical stuff and bills. So Seth gets his PR woman, who is awesome, to hook me up with Nikki Sixx‘s tour manager. Nikki played a huge part in me staying clean by writing his book “The Heroine Diaries”. They treated me like a king. VIP laminate, meeting Nikki, seats I could get to with my cane (I now have leg braces) and swag out the wazoo. It was the first time in YEARS that I had felt so good. The show had me waving my cane and feeling young again. Wow!
 I kept in touch, wrote some things on my site here and life started falling back to “normal. Then I got an offer to write for a small, still in print, rock magazine. I went to as many shows as I could, mostly as press after making some contacts in the music industry. ( See for me, it takes DAYS of preparing my body and mind for the abuse it is going to get ) I wrote a few published articles. I had FINALLY found my calling.
 Not only had my “rock writing” started, but people from the Ehlers-Danlos Foundation read a post I wrote about explaining to others what it felt like to have Ehlers-Danlos. They wanted to publish that and a new article in Occupy Healthcare. They were hits. I have gotten more recognition for my Ehlers-Danlos writing that my music journalism. Things have faded since.
 What I am asking reddit and the internet at large for is a job. I want a job writing articles, reviews and concert stories for a reputable magazine. I want to be the kid in “Almost Famous” minus the cheese. I want to be sent on assignment, go on tour with a band, spend a day with Laura Wilde and see what it is like starting in the music industry.
 MOST of all, out of all the dreaming, I want my mother to know I can be OK. She is supposed to be retired! I sit here every moment just thinking of ways I could get her out of debt. She takes care of me, I am 42 years old and my mom has to take care of me. So please, help me. Helping me helps her, and my mom is the most important thing in my life, but I don’t have a life. I threw that life away on drugs and strippers years ago. I also played the genetic roulette and lost. I TRIED, but now I am just dumping this out into the internet ocean like a note in a bottle, hoping the right person finds it.
 Sorry this was so long, couldn’t make a meme that expressed my words.
Thank you,
Deaderpool
PS I really want Lzzy Hale to take me to the Grammys as her date, but I doubt even the mighty reddit can make that happen.

 

Ed the Golden Cylon


Ed
Help him please.

Meet Ed the Cylon. Ed is a friend of mine, a good friend that knows a lot about me. He traveled a long way to reach me and find a loving home. He arrived at my doorstep one morning and we became fast friends. He was a little beaten up when we first met, but I have carefully fixed him up and gave him a new coat of paint.

Ed is a veteran, and although he wasn’t in any of the wars his people fought. Ed just wasn’t cut out for the military, so he got discharged and began to travel throughout the galaxy. He loves traveling and meeting new people, but since he moved in with me, he hasn’t gone anywhere.

Ed knows all about the disease I have and gets really frustrated when he sees me not doing the things I love. I have a rare genetic condition called Ehlers-Danlos syndrome that keeps me in constant pain. This EDS has no cure and there are very few doctors or scientists working on it. Most doctors don’t even know what to do with someone like me. The typical treatments are painkillers and water therapy. Any heavy lifting or high impact exercise will do more damage than good,

EDS comes in many forms and combinations, I have the hyper-mobility and some vascular traits. If I lift my arm over shoulder height, it will dislocate, and when it does, it really hurts. Most of my joints dislocate or move slightly out-of-place all the time. My pain is never in one area of my body, the pain shifts around and is always present. I also have chronic sleep problems and I get fatigued doing simple things like washing my hair. EDS is my enemy, and now Ed wants to do something about it.

Ed knows I love to travel, but lately it is becoming harder and harder. He also knows that not many people know what EDS is, so he is going to raise awareness. Ed’s plan is to start traveling the world and telling movie, TV, musicians and any other famous people all about it. He will have a journal with him in hopes that these stars will write me and other sufferers of EDS small notes, or draw in it. Anything they want to do with him is OK, as long as he gets his picture taken with you.

Ed knows a few people he would like to visit first and he hopes they will be OK with him visiting them for a day or however long they want. When he arrives at the first persons house, he will have his journal with his home address and contact information in case of emergency. Once he has either filled up the journal or no one will take him in anymore.

The first person Ed wants to meet is Tricia Helfer because he saw and loved a show she was in. He actually saw some of his friends on that show as extras. How cool is that? He would also like to meet Katee Sackhoff, Edward James Olmos, Wil Wheaton (Ed is kind of a geek), Nikki Sixx and so many others.

So help me reach out to these stars to help Ed spread the words, “Ehlers-Danlos Syndrome”, and show the world people like me, a person with an invisible disease, and get doctors to really start working on this one. I can’t afford to travel as much as I want to, so Ed is going to do it for me. Until I hear from Tricia, who as I mentioned for Ed earlier, Please read the links below and check out my post, “Open Letter To Those Without Ehlers-Danlos Syndrome.” to learn what it really feels like.

Ed and I thank you all in advance, he REALLY wants to get out of the house for a while.

Thank you all,

Ed the Golden Cylon and Michael

@trutriciahelfer
@kateesackhoff
@wilw
@NikkiSixx
@edwardjolmos

A bunch of information on EDS HERE http://www.ncbi.nlm.nih.gov/books/NBK1279/

More info http://www.ednf.org/documents/Pain_and_Managing_Pain_2012S.pdf

Open Letter To Those Without Ehlers-Danlos Syndrome


Excuse me while I whips this out…

An oldie but goody. THIS is ME.

Open Letter To Those Without Ehlers-Danlos SyndromeImage
Having Ehlers Danlos Syndrome means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand…
These are the things that I would like you to understand about me before you judge me please…
 I am scared. I don’t know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones?
 If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.
 I am angry. EDS has taken so much away from me. I can no longer do many of things I enjoy doing.
 I sometimes have difficulty just completing simple tasks.
 If I appear angry please understand it is EDS I am angry with, not you.
Please understand…
that having EDS doesn’t mean I’m not still a human being.
I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. 
I still worry about school, work and my family and friends etc, and most of the time I’d still like to hear you talk about yours too.
 Please don’t assume you know what is best for me.
EDS has affected my joints and mind, but I am capable of making my own decisions.
If I make the wrong decision, it is I who has to deal with the consequences.
I still want to be part of the “gang.”
Please continue to invite me to participate in activities. 
I’ll decide if I am capable of it.
You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me.
Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch.
 Please don’t tell me you know how I feel.
 
 You don’t.
 Don’t offer me sympathy; I don’t want your pity. But do offer me support and understanding, which I appreciate.
 I know sometimes I look perfectly healthy, but looks can be deceiving.
 Please understand…
 
 that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you  have the flu (tired, achy and sore).
 Please keep that in mind.
 Please understand the difference between “happy” and “healthy”.
When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years (EDS is genetic, this means I have had it since birth (even if I was only diagnosed recently, I have been suffering from this since I was born)).
I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy.
That’s all. I may be tired. I may be in pain. I may be sicker than ever.
 Please, don’t say,
 “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
 Please don’t tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another.
At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better.
There is NO cure for EDS (and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated.
If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of).
This is not a drug-company conspiracy.
 
There is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something
worked we would know about it.
If after reading this, you still want to suggest a cure, then do it if you must.
Preferably in writing and accompanied by the scientific papers that prove it works.
But don’t expect me to rush out and try it. I might not even reply.
If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
I want you to know that the pain and instability etc from EDS moves around. 
Please don’t attack me when I’m worse by saying, “But you did it before!”.
If you want me to do something, ask if I can and I’ll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn’t mean I can do it today (or in another hour).
Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later).
Also understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover.
Imagine an athlete after a race.
They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to EVERYTHING that I do.
Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand…
that “getting out and doing things” does not make me feel better, and can often make me worse.
EDS may cause a secondary/reactive depression (wouldn’t you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own) but they are not caused by depression.
Telling me that I need some fresh air and exercise is not correct and probably not appreciated – if I could possibly do it then, I would.
Please understand…
If I say I have to sit down/lie down/take these pills now, that I do have to do it right now! It can’t be put off or forgotten just because I’m doing something else more exciting.
EDS does not forgive its victims easily.
Please understand…
 
That I can’t spend all of my energy trying to get well from EDS, it is incurable (and genetic, so unless I can change my gene’s I cannot change my disease/disorder).
With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well.
But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you’re sick/disabled.
This doesn’t mean I’m not trying to get better. 
It doesn’t mean I’ve given up. 
It’s just how life is when you’re dealing with EDS or any chronic illness/disability.
As you can see EDS really Sucks…
Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; EDS doesn’t change the heart and soul.
I still laugh, I still cry. I still love and I still hate.
I am me, I am not my disease. 
Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.
But most importantly, I need you to understand me.
By,
Michael Hyatt