General

Adventures in Chronic pain: You are NOT just what happened to you

Let’s start this post like a mullet. BUSINESS UP FRONT THEN PARTY IN THE BACK! First:

SRS BZNZZ:

I am FACE DEEP into putting the final touches on Intervention 7, which you should register for and come out and hang with me this Sept. 16-18 in Rockville, MD. Here is what we are doing overall and this is my main panel this year:

REAL TALK: Oni Hartstein’s Guide to Marketing Your Work Online (New for 2016)

Oni has been talking about Marketing in its various forms since Intervention started, but this year it’s radically different. Today’s political climate, changes to social media, and how people’s habits have evolved has drastically changed how you should be marketing your art, film, book, music or other creative work. Oni will talk about what works today, what no longer works and will give you a breakdown of where her financial earnings come from. She’ll give an overview of how to work with the press, sponsorships, and will prepare you for what happens when you begin to achieve a level of success. (SPOILER: Your life actually will get harder.) This will prepare you to leverage what you’ve built and not crash and burn under the pressure of haters and sabotage. This is the updated Real Talk about how you can shine when others have a multimillion dollar budget but you do not. Panel ends with an open Q&A.

I’m also going to be sitting on panels talking about chronic pain and disabilities – especially important since I am no longer blind and STILL adjusting to that. :/

Times will be forthcoming soon.

NOW PARTY:

OK maybe that metaphor didn’t work because chronic pain is the opposite of a party unless an Asshole Convention is in town.

DON’T CARE. STILL GOT COFFEE.

I hadn’t had the ability to see doctors that much when I was younger because I was poor. Our society has collectively decided that no one is entitled to healthcare by default, not even children who were born into poor households. I was one of those poor kids that had either no medical care or a family friend would ask a bottom-feeder doctor to see me on the cheap. I also had a weird thing with my situation where I didn’t exist for 12 years because I was abandoned by my parents and had no paperwork. But that wouldn’t have changed much – as soon as I did get papers I saw a doctor about why my feet were hurting all the time.

That’s how I got mutilated.

do_you_want_ants

I didn’t walk until I was 4. I tried, but my feet would not work. I have ligament laxity, so all of my bones have collapsed because my ligaments do not hold my skeleton together.

This doctor thought that the best way to fix this was to do a midfoot fusion and 3 other disgustingly invasive procedures (that included an amputation and reattachment) without trying a non invasive tactic first.

It was a bad idea. But my family had no money and we didn’t have google yet to cross check anything. Doctors should be trusted, right?

I am today “making up” for medical care I didn’t get (or the stuff that I sadly DID get that went bad) as a child. I put “making up” in quotes because you can’t. Scar tissue has healed. Some injuries are permanent mutilations that I can only try and lessen the severity of. I can’t make bones that were removed reappear, and I can’t close the drill holes in my bones nor can I prevent my joints from rubbing which has made arthritis set in in about 4 of the joints in my feet. I till did MMA and everything that I was not supposed to be able to do because I don’t subscribe to what I “can’t do”. If you tell me I can’t do something I will tell you to go fuck yourself and I’ll do it.

“You are extremely bio mechanically unsound.” my current doctor said to me. That’s the size of it.

However, I am hopeful. I went back to one of the 11 doctors I’ve seen in the last several years who seemed to know more than most. He’s got a plan to at least try and reduce some aspect of the pain.

I can’t concentrate because of the pain. I am struggling to write this and have been putting all of my energy toward working on Intervention 7. I get tired faster. It’s hard to work, go home and work my second shift, then do my third shift of art. That’s one reason why art hasn’t happened lately.

I get annoyed with people quicker. I see stars sometimes just because I woke up that day and stood up. It’s miserable. I’ve always been this way yo an extent but I think it slowly gets worse. In winter I have to sit in a bathtub of hot water and occasionally I actually burn my feet or injure myself otherwise because that takes my mind off of the usual pain and oddly provides at least a distraction. I am not meant to live anywhere that snow happens.

For the next week I’ll be taking anti inflammatory pills and writing down how they affect me. This will help us diagnose how much if what is here is inflammation and how much is scar tissue and it will give the doctor some information on what, if anything can be done. I’m also being screened for fibromyalgia, whatever that is.

I don’t even listen to doctors when they tell me things are impossible. 10 of them said they had no idea and I was beyond help or this was too hard for them to deal with. I just kept researching and kept trying people.

Basically FACE DOWN ASS UP never give up on anything, ever.

But it’s been hard lately to get time to create on my own. Because ants.