Promises broken to myself.

So last year at this time, I decided to promise myself something. Since New Years Resolutions always go bust, I just made a simple statement about how I was going to do something big the following year (2014).

Well I had all these great writing/photography gigs set up and thought this was my breakthrough year. I had a comic script I was working on, a novel and a host of other projects that would fulfill my definition of big. Well EDS and other mysterious illnesses foiled me along with my ineptitude. .

As my main talent these days is writing, I thought it was gonna be a cakewalk. Well enter unknown, bone eating whatever the fuck. Suddenly my hand, well pinkie but hand sounds better, was having its bones chomped on, and it hurt. I went to my ortho doc and he thought it was some arthritis shit. He goes in, fuses finger joints and tests to see what it was. He couldn’t find out, it was some anomaly. So I am laid up for months with some Wolverine, metal rod stuck in my finger. Typing is hard one handed people.


Then concert gigs! Yay! I got to see the last Motley Crue tour, go backstage and meet the guys, but no press. The freaking venue didn’t allow it. Fuckers. After bragging that I would have a huge scoop, band after band PR people started… not calling me.

So this past year sucked. I have some personal plans for next  year, but I am at the fuck it stage right now. Money is tight, gotta pay for medical shit and get the hell out of debt. That is why I am selling my most prized possessions, stuff Nikki Sixx and Crue signed. I am even including the signed copy of The Heroin Diaries that has kept me clean all these years. Here is the link to the eBay auction.

As for next year? I have no clue.

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.



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.


Still nothing


So I have fought a bout of depression this week, but I am doing OK now.I got all hyped up on the possibility of talking about EDS on television, then crash and burn.

 The reporter needed meat for the story, because EDS is not sexy. If EDS gave women perfect, elastic bodies, then the would have me on cam 2 seconds top. He wanted to talk to doctors about it, um, there are NO DOCTORS in this area that specialize in EDS let alone know what it is.

 Then the clincher, they wanted my mom to go and talk about how she has to take care of her grown son in front of the city. Yeah  city, because this would only be run locally and no one who could raise awareness would see it. I would not put her through that.

 Went and reviewed Sum 41 the other night, man that singer dude it TWEAKED! He kept sniffing and twitching, but all in all a good show. Read about it in next issue of Rock ThiZ Magazine.

 So, if you are or KNOW a star who is willing to support an invisible disease, help me.

Thanks all.

Ed is getting restless. Help us Six

So after the barrage of positive messages I have received about my article at , Ed is getting kind of jealous. He is like a puppy, he wants ALL of my attention today, so I am going to build him a custom T.A.R.D.I.S. so he can ride in style. A Cylon in a T.A.R.D.I.S. ? Yeah I know, but Ed wants this.

What I REALLY need for you, people in interweb world, is to try and contact some of the following stars so we can get the ball rolling. Tricia Helfer is a must, as she is the Cylon. I figure she could get Katee Sackhoff and Edward James Olmos. Wil Wheaton is a must for geek cred.

We really need one of the Doctors from Doctor Who. Ed and I prefer David Tennant, but Matt Smith is growing on me.

The whole plan in a nutshell is…


Help him please.

Ed travels the world with his journal. Each star has a photo with him and writes something about EDS in it, then they send it on to the next person of fame. Once his trip is over, I will auction off the Journal and [possibly Ed to raise money for an EDS related charity. As there are so few, I am going to research heavily into charities before committing to them.

You can all see below that I need money, well Ed will not be used for me. If you want to give money to me and make my Christmas brighter, use PayPal .

So get out there, tween, G+, Facebook or however you know to reach this small list of people, and feel free to add anyone but try to keep it in the sci-fi area. Here is my list…

@trutriciahelfer @kateesackhoff @wilw @NikkiSixx @edwardjolmos @JeriLRyan

Add More and send to this link Ed The Golden Cylon for EDS

Point them to my article HERE

And info on EDS HERE

THANK YOU ALL and may we bring EDS out of the shadows.

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