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.

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.

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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.

I wanna be Halestorm’s tour guide!


ReAmimate 2.0I gather from my last post, you can probably tell I want to go back to Germany, right? I do, I very much do! One thing I would love to do is visit all my old houses, or the spots where they once stood at least. It has been a long time and I know things have changed, they always do.

Well the other day I got an email announcing Halestorm‘s German tour dates ( I don’t know if they are public knowledge yet, so I will stay mum ) and got a great idea. I have tried to get a major interview with Halestorm, well any big name artist really, but mainly Halestorm. So I thought to myself, “Why not pitch the idea to Atlantic records and my contact  the idea of me traveling with them?”! I could be a tour guide, I have lived all over the country. I could be a translator, well not a pro translator as my German has faded in the years. I could also be a journalist, like a reporter embedded with the troops during wars ( This would be much safer ). It would be a win situation for all parties.

I will not accept or ask for a salary, just pay my way. Plane tickets, rooms, maybe a per diem for food? I would sign a waiver absolving them of anything horrible that could happen, and I would have the story of a lifetime. I am clean, quiet when need be, don’t take up much space and eat very little.

If you think that this would be a great idea, please contact Atlantic records, let them know I am a fan, reporter, vet, EDS sufferer and this would make my dreams come true. I would love you all long time and do a little dance maybe? Would love this to really happen.

Thanks,

Deaderpool AKA M.S.H.

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

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.