Saturday, October 15, 2011

Where's Bill Been Hiding?

I actually haven't been hiding, I was on the endangered species list.

I have been sliding down a slippery slope for about a year now and seem to be finally recovering.


It all started around the beginning of the year when my doctor gave me a new drug that after about a month appeared to be causing a mild rash. We didn't stop the drug at the time because it also seemed to be working incredibly well, doing a good job. Bad idea, should've stopped the drug immediately. However, what I've learned about these kinds of drug rashes since,, it probably wouldn't have made any difference in the outcome if we stopped right away as it was probably too late to stop what had already been put in motion.

Just some redness and a few blisters up around my shoulders, that was all it was when it started. Next thing you know my entire torso is covered in this crap. By April it was a big old mess and I was in trouble. It spread over my head, all hair gone, beard, etc. POOF! It spread down my back, eventually the arms and last but not least, it slowly spread down my legs until it reached feet. Head to toe, I was covered in compromised skin with no real treatment options except time to let it heal.

Time my ass, it's been many months and it's still fucked up.

My skin then started cracking, bleeding, making sores, etc. so needless to say I became home bound for about 6 months. Eventually other weird shit started like edema, most likely a long-term side effect of the prednisone I was taking. The edema got so bad I couldn't sit at a computer more than an hour or so a day before my arms and legs puffed up to the point I couldn't take it and had to lay down. That basically took me offline for quite some time and then other fun things started to happen like my fingernails started falling off which made it almost impossible to type until they were fucking gone altogether.

Then the real fun happened, the edema got so bad the doc tried taking me off the prednisone but did it too fast and just about killed me. My skin had been actually getting better but while being weaned off the prednisone too fast it went in reverse and the next thing you know I'm 50%(or more) compromised, can barely sit or get out of a chair because it's all raw. Real fun stuff.

In a short period I went from being completely ambulatory to using a cane, a walker, and finally being pushed around in a wheelchair when I went out because I couldn't muster enough energy to walk more than a short distance.

I was fading fast, it was not looking good, so I finally got them to admit me to a burn unit about a month ago since they specialize in wound care to get my skin problems stabilized. The first couple of days I spent in the burn unit I was practically bed ridden. Honestly, I didn't think I was ever walking out of that place. However, after spending close to 2 weeks in the burn unit, with new medication and expert wound care, I started to bounce back and walked out on my own.

Currently I still have skin being treated with drugs and bandages but the edema is gone, as well as the wheelchair, walker and cane!

After 6 months of being stuck in the house I finally managed to go out to restaurants a few times, a couple of stores, and even drove the car! Might not sound like much, but trust me, when you've been stuck indoors in the same chair staring at the same TV for 6 months, it's HUGE!

So that's where I'm at, better but not totally healed which could take months, but I'm now online and posting a lot so that should give you a clue I'm bouncing back and well enough to be taken off the endangered species list, or so I hope!

No clue if I'll ever be the same again, but it sure beats the alternative!


Liam said...

Long time reader, first comment.

Wish you all the best Bill. Glad to hear you're on the mend. I've missed you posts (rants) :)

Tony Mach said...

So good to hear your on the mend!

On the danger of sounding awfully nosey, were the side-effects of the meds not worse than the condition they were supposed to treat? And did the meds at least help like they were supposed to?

cpu said...

Hope you continue to get better! I have missed your posts as well!

I actually thought you stopped posting because not enough people were interested in alpha testing LinkScrubber!! :-)

Thanks for sharing your experiences. If nothing else, it should remind us all that those little warnings on the meds we take that say, "If you experience ____, contact your doctor or pharmacist immediately" isn't just legal mumble-jumble.

As Liam said, all the best to you, and we'll be here when you're back to randomly ranting.

danielro said...

owh man... this was a difficult read :( fuck was that ugly and scary, real glad you pulled yourself together and didnt give up.

But why didn't you go to the burn treatment place in the first time? :(

All the best to you Bill!

IncrediBILL said...

Thanks for the kind thoughts.

re: burn unit

First, you have to be pretty messed up to get in the burn unit to start with, a certain percentage of compromised skin and I don't mean just a rash, real nasty stuff like the cracking, bleeding, peeling off and so forth. Took a while before I truly qualified and my doctor recommended it.

Second, there are only 2 burn units left in the SF Bay Area. One in SF, and the one I went to in San Jose which only has 8 beds and was full and within an hour after I started to checkout when they let me go my room was already taken by someone incoming. You have to wait for an opening and I had to have a doctor get me into the damn thing. It wasn't easy.

Staying in a normal hospital room was an open invitation for infection so that wouldn't work either.

I was a bit worried.

Joe said...

I'm glad you're on the mend is the baby duck :)

RLT said...

Wow!!! Glad to hear you are on the mend. You must have one hell of a great woman helping you out!!! ;-)

Adam said...

I just checked in for the first time in a while to find your Firefox post (still the greatest rant on a browser I've ever seen) and read this.

Glad you're feeling better, man. That Prednisone is one of the worst drugs I've ever come across. One of my clients took it as an experimental treatment and had serious back issues as a result. Maybe if the drug companies actually tested properly and did their homework as opposed to lobbying the FDA to criminalize weed, this stuff wouldn't happen.

Anyway, I miss you, you big cuddly teddy bear, you. ;)