I CLEANED AND EDITED THIS UP A BIT.


An open letter to those without Ehlers Danlos-Syndrome.

 

Having Ehlers-Danlos Syndrome means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Not to be mean, but please don’t tell me you know how I feel.

You don’t.

I don’t want your pity. But please do offer me your support and understanding. I will appreciate that more than sympathy. Please don’t tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed tonic. Please don’t suggest a remedy, I do appreciate the thought, and I really do want to get well. At first I tried them all, but then I realized that I was using up so much energy trying things that didn’t work, I was making myself sicker, not better.

There is NO cure for EDS.

(And until they find the exact genes, technology and medication there will be no cure), only some of my symptoms and pain can be treated.

If there was something that helped, someone would know (this is part of the reason I am a member of the online communities I am a member of). There is worldwide networking between people with similar but 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. 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. This is not a drug-company conspiracy.

“But you did it before…”

I want you to know that the pain, instability and almost all of my symptoms from EDS moves around. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes. 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 a 100 meter dash instantaneously either. Imagine the above exchanging standing for, “sitting up”, “walking”, “thinking”, “and being sociable”, it applies to EVERYTHING that I do. I am dealing with invisible pain and a great deal of fatigue. Even on a good day I feel like you would with the flu times ten.

Please keep that in mind.

Understand the difference between “happy” and “healthy”. If you say “Oh, you’re sounding better…” I am not, I am sounding happy. Happy because this is a good day with friends. EDS and its symptoms may fluctuate suddenly, meaning I may need to cancel an invitation at the last-minute. If this happens please do not take it personally. Know 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 but it is not the cause of my depression.

Telling me that I need some fresh air and exercise is not right and probably not appreciated – if I could feasibly do it then, I would. Please keep inviting me to places, I may not join in, but I will be there in the stands cheering you on.

Again, please understand…

If I say I have to sit down/lie down/take these pills now, then I have to do it right now! It can’t be put off just because I’m doing something else more stimulating. EDS does not forgive its victims easily. A major part of having a chronic illness like EDS is dealing with the awareness that you have to spend energy on having a life while you’re disabled. This doesn’t mean I’m not trying to get healthier and I haven’t given up. It’s just how life is when you’re dealing with EDS, or any chronic illness for that matter.

As you can see EDS really sucks…

To wrap this up, please remember that I am the same person I was before I was diagnosed with this; EDS doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am yours truly, I am not my disease. Please continue to love me just as you did in the past. I need plenty of love, understanding, support and embraces.

But most definitely, I need you to understand.

 

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.

 

I have another article printed.


Another magazine and site, Occupy Healthcare really supports me has posted an article I did on EDS! Yay! You can go to this link and read it and PLEASE comment so I get invited back. They also link to this blog and Ed the Cylon’s hopeful upcoming journey.

My Article

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

Inspire


I found a new cyber-home. Well more like a place that has a community of people with the same condition as me, Ehlers-Danlos Syndrome. I have a little badge down on the right that goes to my page there, you will not find it interesting unless you have some disease and want to talk to others that have it as well, who knows though?

It is great to be able to talk to people without having to explain everything. So if you have a condition of some kind, head over to Inspire and talk it out, or don’t. I’m not the boss of you.

Your home page – Inspire.