I haven’t written much about my health the last few years on der Stonegauge… Mostly because Stonegauge is syndicated on the ever-so-excellent Tampa Blab where some of my blog colleagues (who know me better from my endeavor at Boltsmag or my participation at Sticks of Fire) can get wind of this stuff and start fussing and worrying about me. So can my critics as well with anything personal I write about on here. I’ve had private stuff published on this domain before and had it come back to hurt me. But that’s what happens when you blog, ain’t it?

I’m getting away from the fact that I said I haven’t talked about my health much at all on here lately. For the uninitiated, I suffer from a rare genetic disease commonly referred to as NF2. It’s a nasty little gem of a disease that doesn’t get much attention (besides an odd mention on House M.D. every-so-often). It causes benign tumors to grow mostly on nerves in the body. One of said tumors were the reason I began to lose my hearing as a teen and was rendered deaf 10 years ago last December.

It also gives me the supernatural abilities like super-intelligence, telekenisis and empathy along with…

Wait a minute, that was a John Travolta movie. Never mind.

Seriously… The last time I really brought up (bitched, moaned, vented, etc) my health was the summer and fall of 2003 when I hit a couple of hard patches and was frustrated, scared and just flat out torn up (to put it lightly). Blogging things publicly helped me get my frustrations and worries out in the open… or at least out of my head for the moment until the next panic hit.

It’s 4 years later and I’ve got problems again. Problems in my head this time that get the doctors attention. Now, from the smart-ass perspective, you’d quickly quip “Yeah, anyone who (inserts a thought, political idea, interest, etc) would be classified as having problems in the head!” but it’s a little more serious than that. About 5 centimeters worth of serious. Between-my-ears, behind-my-eyes serious.

I’ve been operated on twice up there before. Both times I had the operations in question out west with one of the top doctors in the world. This time around, I’m sticking in Tampa Bay and trusting a doctor who’s been heralded to me as one of the best in the world. He’s got books and awards and all that jazz. He’ll have some of my old friends along with him to make sure my ABI doesn’t get fudged up and what not.

Still, there are risks and even if they aren’t substantial — what they are is a worst case scenarios. So I worry about that, even though it’s almost like thinking about worst-case stuff when you go out and do day to day things.
“The worst case scenario while driving to the Supermarket to pick up milk is that an out of control mack truck with a drunk at the wheel, plows into my car and explodes…. Oh, and I don’t die instantly on impact!”

Rosy, cheery stuff like that.

So part of my mind (ha — the cause of all my problems) keeps wanting me to be responsible and at least report this upcoming operation, make arrangements for the “just in case”, “worst case scenario” type things. Every other part of me wants the status quo to remain — though that status quo is a deteriorating personal conditions where the changes in my health are more or less subtle until I get to a tipping point and things really get messed up and my life hangs in the balance.

Rosy, cheery stuff like that.

I don’t want to face the idea of things — out of my control — go bad and yet with responsibilities to friends and loved ones, how can I not?

It’s been a while since I was concerned about my health. It’s also been quite a while since I’ve overcome the last obstacle on my path of life. That being said, next week before I interview for a job, I’m supposed to talk to a doctor again and what the focus is on, is something that is affecting me and my day-to-day feelings.

Something’s got to be done in the near future and at the same time – the consequences if something goes wrong are immense.

About a year ago I was in real bad shape…

I can’t convey how bad it was – I thought i was going to spend the rest of my life in a wheelchair. I thought I wasn’t goign to be able to physically perform with someone, I thought i wasn’t going to be able to go out and aout and more and would be at the mercey of someone who cared for me – or didn’t really but felt a responsibility.

At one point… exactly a year ago within the last few days — I got that wheelchair I worried aobut and my mom got upset… Telling me that if I get in one, I’m never getting out. Why would she say that? Basically it’s something that you see with elderly people who give up or who have their lives fall apart. Why try any more? It’s not like they will recover that well.

Meanwhile things continued to go down, get worse for me… It came to the point where physically trying was redundant because my body would fail onn me, int eh attempt.

Now it’s been a week since I got back from LA and it hits home every day when I think about how much things have changed in the past year. I didn’t give up, I didn’t stop fighting… I didn’t stop sticking my neck out either (but that’s a different story). The difference si night and day. Where I was doing physical rehab to try to keep some strength, now I am trying to use that strength I’ve regained to live my life agian.

Now if only I wasn’t stuck in the suburbs… but again, that’s a different story.

Sore throat, head that feels like bricks, itchy eyes and a nose that leads me to sneeze over and over again….

Oh Nurse, where are you when I need you?

I admit it, I am a junkie. A total, dyed-in-wool junkie…

I want my walker fix, I need my assistive walker fix! If I don’t have my fix, I go crazy! I have a difficult time doing routine things like, well, walking! I need to lean! I want to lean! I want your support walker! UGH!

Seriously though, folks, being a gimp as my medical posts have so often referenced, I’ve been using a walker since last August and I’m starting to get peeved I am still dependent on it. Oh no, it’s not because I physically can’t walk without it any more… It’s that… Well, I can’t LET myself walk without it. It becomes so difficult!

I looked around the Internet and I couldn’t find anything on the psychological dependence patients build towards assistive devices in case they are using them for a long time. I’ve been confident that exists for a very long time after seeing plenty of elderly people, after surgery, insist on continuing to use assistive devices that they no longer need. It’s easier that way. I have to agree with them but at the same time — I’m a 24 year old and walking around as a gimp without something to lean on kills my social life.

Friend: “So, you wanna hang out?”

Me: “Sure, just make sure you drop me off curb side because the pavement is cracked in front of the building. Also help me get to my seat — screw chivalry! — I look like a fool pushing this aluminum walking thing around.”

Fun stuff :rolleyes

SO I gotta try to kick the habit. Be that by upgrading to a cane and making it Swing or by just getting rid of the walker and forcing myself to walk without it. Easier said than don, either way.

Somethings wrong with my old man…

Not only does Dad have a bad back, but something else is up with his arms… He’s at the hospital right now.

I’m pissed and concerned all a the same time.

Rehabbing is fun.

No I am not some muscle bound guy – anyone who knows me knows that isn’t the case… Yet I have been having a hell of a lot of fun working out and trying to get back into shape. I’m impressing everyone who sees me with how I am doing because of how BAD I was doing just a few months ago…
‘
Of course, in case you didn’t see it (and there are plenty who didn’t) you don’t know just how bad I was doing and how incapacitated I was. I’m chaffing at the bit now because I am thisclose to getting out of this oppressive life and DOING something again. Work? Travel? Either or appeals to me.

Now John is stumbling around the house a bit — sans a walker.

For the first time in a very long time I am trying to make some headway around the house without a metal walker clutched in my hands… It’s difficult because I am still leaning against things and still walking with stiff legs for some reason or another but its a hell of a lot better than being certain that I would be trapped as a gimp for a long long time.

Further evidence that I am progressing — going shopping and not using a rinky dink electric cart to buzz around the store on Tuesday. That was fab.

Oh, the life of a walker-bound sports fan…

Last night me, Michelle, her brother Geoff and one of Geoff’s friends attend the Lightning vs. Devils game at Times Palace. The game itself was a bore for the most part but the company was real good.

What sucked was getting to and from the arena.

I haven’t walked through a cityscape with this walker and my first experience with that was last night – it’s tough folks. It’s even tougher getting into an arena without knowing the access points for cripples and gimps… No offense intended towards the disabled.

And leaving the building? Don’t get me started…

Haven’t said very much about me lately and where I stand on a lot of issues — well, not politics and such but me me me…

Selfish? Maybe — this is my web site however so…

Lets see — I did say I felt like a Nowhere Man yesterday and that is indeed the truth to things — maybe that’s feeling sorry for myself as I try to rehab but it feels like the truth. I got nothing going on, no idea where I am going to, etc…

Meanwhile, what’s going on with my writing? I’ll tell you exactly what is going on — nothing. Sadly at that. I can’t get the get-go to write, and I can’t finalize stories. I still have two assignments to do for the Long Ridge Writers Group and I can’t quite do them :sad

I am supposed to start outpatient therapy next week which is certainly a plus – it’ll get me out of the house 3 times a week and help me attain my goal of getting my ass back into shape… The only problem is, when I get back to being a mobile being, I still have both physical and mental obstacles to overcome… And social, can’t forget social…