The Max Murdok Program

Kind of literally. It’s time for one of those bitchin’ about my health posts including my Crohn’s situation, my heart developments, and just the general state of feeling like shit. This is by no means a pity post. The best way sometime to see results is to put this kind of stuff out there and see where the chips may fall. I do so at the risk of getting some well meaning but not really helpful suggestions. Trust me, I’ve heard most of them. They are like a bad penny,…um whatever the hell that means.

They're out to get me!

Some of you ( and I thank you ) have read my previous posts on my many hospital stays. This post is not about that stuff. This post is basically to share the fact that I am at my wits end with this disease. I know for a fact that many people, unlike me, lead very productive lives with Crohn’s. My situation is different. All those with Crohn’s have different situations and I understand that. I’m posting to get the message out that I need to approach this thing a different way. I am willing to travel to any part of the planet just to have a day where I don’t feel like ass.

So lets back up here and explain a few things, like what I deal with. I always wake up with gut pain. I take meds before bed and I do get OK sleep, sure that could be better too. But my day starts with pain. So the pills are popped and the morning ruined as I wait for things to kick in. Kick in enough for me to be able to sit upright. Thats an accomplishment. Some days when I get past the start of my day one would see me and think I am 100% healthy. Partly I put on a good game face but sometimes, yeah, I feel OK. But at some point that will fade away. I still have blood in my stool. I still run to the head 6 – 10 times a day. When I do have a doctors appointment, other than with my G.P. Dr. Scheeler ( who at least gets some things rolling in the right direction ) it’s usually radiating me in some diabolical machine that, thanks to 6 years of testing, give me a fear – claustrophobia that is off the scale so I have anxiety and usually can’t go thru with the tests. Physically I get sicker. Its lame, I know that. I try to endure it. It doesn’t work and usually my protests fall on deaf ears. Dr. Scheeler already thinks I have had way too much radiation as it is. I joke and I say “Cure me before you kill me – yes, its on a T-shirt now! ) but it’s true.

Dr. Sabel at South Denver G.I. has basically thrown his hands up in a matter of speaking. You know he’s at his wits end when he’s the one suggesting I get a second opinion, and he’s the best in the Denver area. I’m proud to have him as a doctor and since we’ve known each other so long I can call him friend and know he’s giving it to me straight, and he really doesn’t know what to do with me at this point. He suggested The University of Chicago’s Gastroenterology Department. I’ve also looked at Penn State Hershey Gastroenterology – UCLA’s Digestive Disease Center – Hell even the Royal College of Physicians & The British Society of Gastroenterology in London. I wouldn’t rule out Gastroenterology in China for Christ’s sake! Like I said, I will go to ends of the earth to find some kind of relief. For more babble, continue reading… “Gettin’ Tired of Having my Ass Whooped.” »

Or how health care, being sick, hospitals and doctors tend to suck.

Around the very end of July, last day I think – not sure because I was sick as hell. I had been sick the week prior but thought I was getting better. When I say sick I mean a Chrohn’s flare. Most of you know me and know I have no problem telling it like is. I was shitting so much, so fast I wasn’t digesting my pain medication what so ever. It just so happens that my GI doc wanted “samples” and yes, sick and all I was saving my shit and found a god damn pill, the 20mg still readable on it. Happy thought.

So, I’m not only sick and in pain but as I try to reduce my pain meds during this, I’m not getting enough and going through withdraws. Things reached the peak when nothing would stay down, and all my meds and what food I could eat came up. I began to fade in and out of consciousness and my wife had to call an ambulance. ( Once again, thank you to my friends at Elk Creek & Park County Sheriff ) What happened between then and admission to Littleton Hospital I have no idea at all. BUT that is where a lot of things happened, none of them good – some of them insightful – all of them quite shitty.

Healthcare is Diabolical

First off, this is with out a doubt the worst hospital stay at Littleton Adventist Hospital I ever had. I don’t know if it was an administration change, or policy change, or both but what a god damn train wreck that place has turned out to be. The nurses and CNA’s were great as usual, but their hands are tied when it comes to medications and what not, often that puts them in the middle. In the middle of, in my opinion doctors who don’t effectively communicate or worse flat out do not give a flyin’. I’ll discuss that part in a bit, I’m not just talking out of my ass on that.

So. Crohn’s is doing its thing, making me feel like shit but within a day or so it’s brought under control. Slowly I start to feel better and it looks like I’ll be going home. Suddenly and without any heads up, the charge nurse comes in and says “Actually, sorry – you can’t leave, we have found an infection in your blood.” That is actually when it, everything, takes a turn for the worse. One of the doctors from South Denver GI, ( Dr. Kugelmas ) whom I do not see at all, only in the hospital – apparently doesn’t read my chart or at least the part about my high level of pain meds and STOPS all of my pain meds right then and there. I spent at least 12 – 14 hours in so much pain and withdraw that I don’t even remember that day other than the level of pain and agony that I can’t even put into words. Minutes seemed like days, literally. I have not decided yet, what to do regarding that. I have a great relationship with my doctor ( Doctor Sabel ) , and his nurse Candy – they call me, they check on me, and go above and beyond when it comes to getting my crohn’s controlled. This associate, this $#@&^% Kugelmas put me through a living hell and as you can guess, I’m not too pleased with what went down. Now, the on call doctor did eventually catch the error and fixed the med issue, going so far as to say “He ( meaning me ) can’t be pulled off his pain medication!” Also, surprisingly Doctor Al-Tamimi, on a Sunday, got involved somehow. I am not sure how or what, but I believe Dr. Darcy called him for me. She’s my regular doc and in my desperation, I sent her a TXT message telling her that in effect, Littleton Hospital wasn’t doing shit and that I was in a living hell.

For more babble, continue reading… “My Rotten Health and more…” »

Quick post here, 1st of course I was shocked as everyone was over the death of Bernie Mac. I guess alot of people have been searching Sarcoidosis now as a result of Bernie’s passing. I was shocked as well and want to offer my most sincere condolences to Bernie’s family and thank Bernie for the years of comedy, he was one of my favorite comedians ever! I was of course blown away by his untimely death, but even more so by the reports of him suffering with Sarcoidosis for years and years. It’s unclear the role this disease played in his death, but I’m to assume it had some role or else it wouldn’t be reported. I am watching CNN at the moment and they have covered Bernie’s death extensively referring often to the Sarcoidosis.

Scroll down a bit on my blog here, theres more on my Sarcoidosis and the technical definition/links. I don’t want to dwell on it again with this post but for those of you out surfing and found me and my site, I do have a little information you may find useful, mainly links. But certainly not the Sarcoidosis resource online. I have enough crap going on, my Sarcoidosis is just a very annoying bonus to my healths anti-lottery I won.

It’s a kooky disease and I have to be honest, I didn’t know it was this severe. I’m going to guess that Bernie didn’t know either. All this comes at a time too, when for the last several days I have been suffering through a pretty strong bout of Sarcoidosis pain in my chest. So it all hit home for me today. Luckily I have an appointment coming up with a pulmonary doctor to get started doing whatever, something, with my disease. As far as I know, which is little to nothing since this is such a new diagnosis for me, is there are no treatment options. It comes and goes, runs it course.

Figures.

If anything happens with that, my appointment I’ll be sure to post about it. I don’t expect anything to happen so,… maybe I’ll post some poetry in yiddish.

Oy!

So, the day after I posted the blog entry below. The one where I’m giddy with joy about my hip working again, I find myself now writing this post from Littleton Adventist Hospital Room 502.

What happened you say?

They don’t know yet. All I know is I felt swell the morning of April 17th. I had walked around, thats right punk – you read that right, I walked. All unaided and such. And then I yawned. The deep breath about knocked me out with this off the scale pain – a stab under my armpit on the left side.We called the surgeon and his office said get to an E.R. right away.

So off to Littleton I go, and here I sit as I write this. Could be blood clots, could be pneumonia and could be something squirrelly with my lymph-nodes. These aren’t new things they are all related in some way to the surgery. As far as that goes I’m healing good, its just these latest things screw up any chance of a speedy recovery.

But as the post below reflects, I’m still silly giddy happy about the hip surgery. What bums me out is that this latest turn in my health surprised no one so I have no one to say “see I told ya something would go wrong”.

Ahhhh, my lovely luck.

UPDATE:
Well I wanted to update you all that as of April 19th I was released from the hospital however I have to make an appointment with Dr. Guber for an out-patient procedure. In a nut-shell, I need to have my lymph nodes tested and there is a slim chance that there could be Lymphoma present. The procedure I need done is not very complex. I get knocked out, a tube gets inserted in my neck and fished down my chest to the different lymph nodes and a chunk is taken and tested. Only then will we know if we are dealing with something minor and treatable or the end of the person you know as Max.

I’m not too worried at the moment simply because of a few things. This would of, or may have shown up in the testing I had done prior to surgery and it didn’t…as far as I know. Also, I am healing well – with as far as I can tell, no infections or any complications from the surgery. Hell I am walking unaided now. No walker, crutches or cane. You won’t see me as a runway model anytime soon, but I’m walking. Granted I know shit from shine-ola when it comes to lymph nodes and cancer but it all just seems sudden to have developed this. My hope is that its something minor.

And since coming home, the pains in my chest have lessen. I can take a deep breath with no pain. Some of you have asked why Lymphoma and cancer as well as how it’s related to Crohn’s. Or what brought this on, is it out of the blue. Basically, if indeed I have developed Lymphoma it could be from the Humira injections I receive for controlling Crohn’s. There is a risk from that. Once again, the treatment can be worse than the disease. If this is not Lymphoma I have to then deal with possibly getting off Humira just from the scare alone which then puts me at risk of another flare of Crohn’s. I am yet to be afforded any win – win scenarios. Most are loose – loose. BUT only time and the testing will tell.

So the next time I post, unless something out of the blue happens, it will be the results of the test and we’ll all know if there will be future bloggings and content or if this was yet another bump in the road to my recovery. That’s the latest as of April 20th, 2008.

Quick update on things here in the land of Hobbleshit. I may have mentioned briefly my sleep apnea, and so far so good with that – kind of. I still can not make it thru the night with that thing on my head. I was put on Rozerem which I have to say is really good. Does what it says, puts you out – keeps you out and I don’t feel dependent. I was also put on an anti-depressant which I’m not going to name but it’s not a hard core one as I’m not super depressed, it just helps to have some focus and be positive in an otherwise crappy situation.

Don’t know but plan on asking the docs if any of the new dope I’m taking is cause all my joints to hurt. I mean come on, really. I need this additional pain? Now my shoulders, legs, fingers, toes? I’m worried that it may be the Crohn’s coming back. In the past I’ve had serious joint pain before a flare… not all these joints, just a knee or fingers. Speaking of which,… I’ve never seen any of my fingers “fing” yet.

Yeah – joke. Shaddap, I don’t feel well – maybe my sense of humor is ill too.

Well, yeah – it is and has been.

Alot of you haven’t seen me since I got this sick. I retreated to my house in the hills back in April ’07 and I’ve been hiding there ever since ( cuz I hate being a freakin’ bummer ). I haven’t cut my hair since late last fall ’06 or so, so yeah – it’s pretty long now. I’m going to get it chopped off soon and donate it. I figure there has to be someone out there who could use a few stylish grays. I may shave my head, sounds fun. Fugly – but fun!

Finally, Rizzo ( the rookie Pug ) is growing fast and is very entertaining. He is all of 7 or 8lbs and easily whoops on Dweezil the mega-monster pug who weighs in a whopping 29lbs and swelling! Oh my MAC died too. My trusty mac of many many years went belly-up and hopefully the new one will be here tomorrow.

…and for those of you who asked about my Physical Therapy post,.. as in where did it go. All I can say is it’s gone? Will that do? It’s gonna have to.