Friday, September 13, 2013

Bill's Still Banged Up But Fighting Back

If any of you read my post about "Where's Bill Been Hiding" you know I got really sick and just about died a couple of times.

Then I got much better, was almost completely healed, or so it appeared at the start of 2013.

Weaning. So the docs started weaning me off all the medication as it's kind of harmful as well but the disease was still too active it seems and weaning was once again premature. I had just finished getting weaned off all the medicine, didn't have much energy, but that was to be expected. Takes a few weeks or months for all the effects of all those medications to be reversed and resume a somewhat normal existence.

However, nothing normal happens anymore.

Relapse. I was in Florida in Feb, 2013 for a brief vacation and business trip combined when my legs and feet started to come unraveled. It started on the plane ride to Florida when I had some massive edema event. When we landed and I took off my socks it was a 'HOLY SHIT!' moment. Stuff was oozing from my legs and some skin was feeling loose and near peeling. Joy. Wasn't sure if I should panic or not and was three thousand miles away from any doctors that could do anything about it. So stupidly I waited to see if it was just an odd occurrence or relapse. Sadly, it was relapse.

By the time I returned to California there were 2 gaping holes in my ankles, a big erosion on top of one foot, and erosions below the knee all over both legs.

Very painful, excruciating, not pretty.

Medicated Again. The docs put me back on all the medication but lower doses just to try to maintain my status and reverse the damage. The lower doses appear to work well and not have such bad side effects but healing is much slower.  However, that strategy seems to have paid off as everything healed up except one spot on my foot that I know call my "zombie bite". Yeah, I know "zombie bite" might sound stupid at first but if you ask someone if they want to see your wound vs. a "zombie bite" one gets the obligatory "yuck" while the other gets a "hell yeah! let's see it!".

Showers were a screamfest.  I started showering with socks on just to keep water from directly hitting the open wounds. Even with mitigating water access to the wound during the shower, coming out into the open cooler air after the shower was a trauma all of it's own which could take up to an hour to get the foot to calm down in the beginning. It eventually got better and now I shower with no socks.

Socks. Used to be something I wore when wearing shoes. Now it's something worn 24/7 to keep the foot clean and the "zombie bite" from getting cold or dry. Otherwise, I'd be screaming in pain and popping pain pills all day. Luckily the doc finally figured out how to manage the pain because even the socks didn't help when it got cold at night or coming out of a shower.

Pain. Getting the pain managed was a good thing because I was starting to lose my mind. When you start to fear showers and 50F degree weather you know something has to be done. Took a couple of months before we figured out what worked and what didn't but now the pain is under control. Side effects, do those matter as long as you're not screaming in pain?

Numbness and Shaking. My foot feels like a big numb squishy stump when I walk on it. It's almost completely healed, just a little gap left, but I can't feel shit. I feel it if it's touched but the pain was totally squashed with neuropathy drugs. Problem is those drugs make my hands shake. Sometimes everything is fine as I seem to be adapting to those drugs, and then out of nowhere the hands shake like crazy for minutes or hours. My doctor recommended I put them in my pocket. I like the way he thinks!

Electric Carts. First time I've ever used those electric carts at the store but with 3 big holes in my feet I figured it was best to skip walking, let it heal faster, and avoid any additional damage. Some would say just stay home but I was hellbent to maintain some level of normality, just in an electric cart. Strategy seems to have paid off as I wasn't using the carts more than a few weeks before I was healed enough to walk again. Not perfect mind you, just not so painful that I wanted to scream at each step.

Blindness. One of the drugs I'm taking can cause cataracts. My eyes weren't good in Feb. but I could still see well enough to drive. Within 3 weeks of going back on the drugs I had severe cataracts that just got worse to the point I was beyond legally blind. Increased my screen to 120 DPI, had to crank up the font size on my computer, then zoom in the browser 3x-4x, then use the magnifier in Windows 7 to show text like the Times Square Jumbotron on the top of my monitor at 400% larger than all that. It was about as extreme as you can imagine and I was struggling to read even at that.

SmartPhone Salvation. My Android phone was my lifeline for more reasons that you can imagine. The camera in the phone works as a magnifier so I could read stuff out in the real world. More importantly, it allowed me to bring things close enough to my face to see. Prices on a shelf too far down or two high was easy, take a picture of it and look at the picture. People's faces across a room, same thing, look through the camera to bring it close to my face. From across the room things were a big blur but the camera could see it and I could see the camera screen an inch from my face.  The phone could also read out loud using TalkBack so all that tiny text it would read to me and I could reply via voice input. Without the smart phone I'd have been completely lost.

Tablet Triumphs. My Nexus 7 was another great tool for the vision impaired. Triple tapping brings up a big full screen magnifier that allowed me to easily read stuff I couldn't read on the smart phone. Why the smart phone version of Android didn't have triple tap magnification I have no clue, maybe it's the vendor's option, but not having it on the phone sucked. Additionally, I could actually see video on the tablet because I could get the screen close to my face so it was preferred over TV or even the computer for watching video. It also supported TalkBack but didn't support many of the "driving mode" voice activated and text to speech options the phone had which sucked but it was better than nothing.

Cataract Surgery Freakout. When I was finally stable enough I got one cataract removed so I'm not blind anymore. First couple of days after it looked great, I could see everything, then I wake up on the 3rd morning after and I'm having reading difficulty, the next day it's even worse, day after that I can't read shit. Back to the Jumbotron. Went back to the eye doc and he takes a look and tells me my cornea is fucked up plus it's dry as hell. Now I need to put eye drops in all day long to keep it wet and I can see just fine. Think of a wilted plant, you water it, it perks up. My eye is the same, I lose focus, you water it, I get focus, I'm being watered like a fucking plant. But I can see just fine is the take away here, just wet. Looks like I'll get the other eye done in October and that cornea is fucked as well so nothing easy coming my way it seems. The bright side is I found out most people with this skin problem I had end up blind as the corneas are totally fried so I'll take slightly fucked and seeing well vs. fried and blind.

Round Two Complete? The foot has just a sliver of an erosion to heal, nothing much, but it's been 7 months already, enough is enough, again. Now it's been a few years of this shit and enough is really enough. Time to get past it and move along. However, I don't look forward to being weaned off the medicine again as I'm not sure I could handle a round 3 of this shit so I hope it goes a bit smoother than the last time.

Status. One eye fixed, soon to be both, and other than a little bad spot on my foot I'm basically back to normal and working away. Assuming you define normal as no fingernails, no toenails, no hair and watering your face like a plant 6-8 times a day and always carrying eye drops and pills everywhere you go. That's my normal and I can tell you normal becomes anything you have to do day after day for weeks or months, like wearing bandages, it's a little nutty.

However, I'm still here and kicking and isn't that all that really matters?

Being messed up does have it's perks in handicapped parking.

I get all the best spaces.


Michael Clark said...

Whoa! Thanks for the update on your ordeal. I hope your healing continues apace.

Anonymous said...

Hi! I'm a long time reader of your blog. I wish you all the best and hope that you get really well really soon!