Out of the frying pan, back into the fire

I’m finally out in the free world again after an all-too-long stay in the hospital. I’m quite certain that I could have been released after three or four days, but got stuck there for a week and a half largely because of the holidays — the relevant specialist doctors were on vacation, in addition to the pharmacies running on limited hours and limited staff making it difficult to get my frustrating narcotic regulation-crippled prescription set in motion. I have a nice pile of stories to tell and comments to make, but I’m going to sit on the majority of them for a little while because they’re still unfolding and I need to give them more thought to figure out what the “moral of the story” may be, and also I feel I need to respect the privacy of the other people in the stories (primarily my fellow patients) making me vague on some stuff anyway.

Officially I was in the part of the hospital that specializes in “medical de-tox”, but I was the only patient (of six on my floor and maybe a dozen and a half total) who had arrived via the pain management channels and was thus there to stabilize and then increase the amount of medication in my system. Everyone else was there because of difficulty with addiction and abuse, mostly some form of opiate but also a few who were struggling with heavy-duty alcoholism. Of course there was more than enough anxiety and thin nerves to go around, but everyone was very nice and we all got along great, with the exception of one complete scumbag user — as in user of people — who I’m pretty sure was just there for a free place to crash after she got in a fight with her [perhaps imaginary] girlfriend and got kicked out after being irrationally rude to everyone (especially after we all turned down her begging us to hook her up with heroin) and being high the whole time she was there. She’d snuck in a stack of fentanyl patches, which are a powerful opiate pain killer — or in her case, narcotic — that work sort of like nicotine patches. They are supposed to release 100µg/hr over 72 hours, but instead of leaving them on her shoulder where the nurses had put them she was tearing them off and chewing them. This can release as much as 7,200 µg into your system in a short period which is enough to kill many people. She didn’t drop dead, but she was nodding off the whole time, falling over, dropping face first into her food, and walking into walls. This might sound funny, but it’s actually very unpleasant to be around, profoundly ugly behaviour, and I’m guessing that it was quite upsetting to those patients who were recovering from opiate abuse.

When she eventually got kicked out — and it took a week of complaining about her even though she’d broken pretty much every rule she was capable of breaking — it took the nurses a good six hours to get her packed and out the door. She spent the last hour asking everyone if she could borrow a towel, and when everyone told her no, using the excuse that our towels were dirty, she pushed to borrow our dirty linens. Still met with refusal, she eventually found the cleaning staff’s supplies and I saw her walking into her room clutching some fresh bedsheets and towels. I’m sure that it will come as no surprise when I tell you that when the nurses walked her down to her cab that her beer belly had somehow morphed into a cubic shape. A few minutes later they returned and she’d mutated back to her scrawny trucker body with a round gut and the nurse was not-so-inexplicably carrying a stack of linens as our nemesis angrily whined, “they’re for my friend Bruce!”

Eventually they got her into the cab, and we watched out the window as it drove off the hospital grounds. To our amusement and horror it stopped half way down the driveway and she got out, and we suddenly feared we weren’t rid of her. She went and popped open the trunk of the cab and spent a couple minutes rummaging around until — surprise, surprise — she’d found her fentanyl. She couldn’t even wait to get off the hospital grounds before getting high again. For all I know she’s dead of an overdose now. It wouldn’t surprise me. I hope she gets help, and I understand that being an addict is a terrible illness because everyone — including yourself — blames it on you and you get very little sympathy, but wow, of all the ill people I’ve met, I don’t think I’ve ever met someone who it’s harder to wish well for.

But other than her, everyone on our floor was very nice, and very genuine about whatever healing they were there for. We all got along and — with the place being so boring to be in with so little to do — spent a lot of time talking and watching movies and a few of the nights ordered food. Stating the obvious, the hospital food was insanely horrible. I mean, I don’t think I could cook food that bad if I was trying to. Just awful stuff that I’m sure has a detrimental effect on recovery, so as I’m sure you can imagine, ordering comfort food like pizza was truly sunshine from heaven. Naturally, on the day we ordered pizza, the above-mentioned scumbag — who of course hadn’t offered to chip in for the pizza, but we were still naïvely willing to share it to try and help her through a rough time — walked over, picked up a piece, spit out “it’s fucking cold” and threw it back down on top of the rest of the pizza and stormed off. Real nice. A few days later when we got Thai food at least she didn’t contaminate our dinner, but upon seeing us finding a moment of happiness as we enjoyed it, she yelled “if you like it here so much why don’t you just move in” before slamming her door.

I’m off shortly to get Nefarious at the airport, which I’m very much looking forward to, so let me begin wrapping up here. I scheduled the hospital stay while she was off visiting her mom for the holidays. I do however want to briefly add a public thank you to all the nurses and doctors at the hospital. I was treated with respect and kindness the whole time, and even flattered by a few who treated me like a celebrity (and knew quite a bit about me after some googling I guess), and even though I was completely dreading the experience of being “locked up”, other than the first few days where my pain level was very high (thankfully though I never went through even a moment of withdrawal as the medications changed), it was a good experience. I got a mountain of reading done, and in addition to television and socializing, I fiddled with the limited art supplies they had there to pass the time.

Unfortunately the place is radically understocked in all ways, not just food. I’ve already dropped off a couple cases of soda and other treats for the patients, and I’m going to think about some other ways that I can help the place out (other than donating cash to the hospital’s foundation which is lower on my charity list than direct action).

But before I get rambling on other stories or politics, I must report that although it’s a little early to say too much, from a medical point of view the visit was worth it. It was only to get my pain management on a new path and didn’t do anything for the underlying disease, but now I’m on methadone which the doctors tell me is the very best medication at their disposal for the type of chronic pain that I have. For those that don’t know, I have a rare genetic disorder that’s causing a grid of tubular shards of calcium to slowly shred and destroy my skeletal muscles, leaving useless junk tissue in their place. In addition to eventually leaving me completely paralyzed (and possibly blind), it’s extremely painful, and the pain is constant, relatively consistent, and never goes away. The pain gets worse and the condition accelerates the more I use the muscles, so I can probably minimize it (but not reduce it) if I spend most of my time in a wheelchair, but the reality of my life is that I prefer to be as active as possible, which may not be so good for me but is a trade I’m willing to make. I’m currently on a medium dose of methadone, and I’m expecting that it will still double or triple from where it’s at now (it behaves very differently from person to person, and I tend to be extremely drug tolerant), but it’s already more effective than Oxycodone, Dilaudid, and any other opiates I’ve been on with the exception of diamorphine/diacetylmorphine by a significant margin. For the first time I’m hopeful about this medication’s ability to help me, and I’m looking forward to being able to start focusing on treating the disease rather than just its symptoms. It’s not going to be easy but the future is definitely a little brighter.

By the way, let me make a standing offer to anyone reading this in the future who’s considering similar treatment (methadone pain management) or has a similar disorder (tubular aggregate myopathy) that you’re welcome to email me if you want advice from someone who’s been through it. I’m at snowrail@gmail.com and if you don’t get a reply, just email me again. I get a load of email and sometimes stuff gets missed in the bulk or falsely auto-filed as spam.


  1. Sarah wrote:

    Glad you’re out!!

    I know pain management blows, they still have yet to figure out exactly what’s wrong with me but I’m on a steady dose of dilaudid..

    I’ll keep you in my thoughts as always <3

    Thursday, December 30, 2010 at 1:40 pm | Permalink
  2. Pamela wrote:

    Wow! I wish the best for you and your family. I am sure Nefarious will learn great strength from your battle.

    Thursday, December 30, 2010 at 2:16 pm | Permalink
  3. Matte wrote:

    My ex-wife is on a methadone pain management regiment as well. They have also started her on a new drug called Nucynta. It has helped her quite a bit and may help you as well. I hope you are doing better now and I hope you have a great new year.

    Thursday, December 30, 2010 at 3:47 pm | Permalink
  4. Shannon wrote:

    Thanks Matte, I’m going to do some reading on that… The more I know the better. It’s been really good and very reassuring to hear from others who’ve had success with methadone for pain treatment.

    Thursday, December 30, 2010 at 4:26 pm | Permalink
  5. Ashleigh wrote:

    I’m so happy to read this! Welcome home!

    Thursday, December 30, 2010 at 5:01 pm | Permalink
  6. Tiffany wrote:

    Shannon, I’ve been a fan of yours (and BME, too) for probably a decade now. I’ve enjoyed reading about your day to day life and am always inspired by your never-ending drive to create and do good in the world. I feel like you’ve helped me a lot in my own life to create and to strive to be my true self. I am happy to hear that this medication is helping you and I hope it continues to do so. Thank you for being you and for sharing the sometimes not-so-wonderful parts of life with us. Best wishes!

    Thursday, December 30, 2010 at 5:24 pm | Permalink
  7. starbadger wrote:


    Thursday, December 30, 2010 at 9:32 pm | Permalink
  8. DIYer wrote:

    Welcome back.

    It’s a selfish thing, of course. But I think the world is a better place with you in it (yeah, trite, I know).

    I have been a fan of yours since usenet days. I wasn’t active but used to lurk on rab.

    Thursday, December 30, 2010 at 10:05 pm | Permalink
  9. MissJanet wrote:

    Sounds pretty good for a start, hopefully you can now find the optimal medication to reduce your pain as much as possible.

    It’s great that you are back home and back online :)

    And a happy new year to you and your loved ones!

    Friday, December 31, 2010 at 7:12 am | Permalink
  10. Zandelion wrote:

    Glad to hear your home for new years! Hope its an excellent one with your daughter!

    Friday, December 31, 2010 at 11:24 am | Permalink
  11. john wrote:

    glad your back….. enjoy

    Saturday, January 1, 2011 at 2:35 pm | Permalink
  12. Em Bem wrote:

    Hi Shannon.

    Welcome back!!

    It’s so nice to hear from you. :-)
    I’m happy for you that this experience wasn’t too horrible!!

    Good luck to you and Caitlinn for 2011. :-)

    Saturday, January 1, 2011 at 2:51 pm | Permalink
  13. Dara wrote:

    so glad you are back and in less pain

    Saturday, January 1, 2011 at 3:14 pm | Permalink
  14. starbadger wrote:

    Dear Son

    Perhaps lost in all you wrote – you wrote one sentence of perfect clarity.

    “I’m currently on a medium dose of methadone, and I’m expecting that it will still double or triple from where it’s at now (it behaves very differently from person to person, and I tend to be extremely drug tolerant), but it’s already more effective than Oxycodone, Dilaudid, and any other opiates I’ve been on with the exception of diamorphine/diacetylmorphine by a significant margin.”

    I appreciate as I believe most of the readers here do that there is 1./ your case 2./ the big picture 3./ science

    I applaud your account of your hospital stay and your dropping off pop and games at the ward – it’s human-all-so-human to do so – whether it helps or harms

    which brings me to the 2nd point – why not the drugs more freely

    the ans. to why not is as near as
    “I am addicted to Aston Martins”

    but you are not an addict and does a review of the last century not support putting the drugs

    Sunday, January 2, 2011 at 1:10 pm | Permalink
  15. starbadger wrote:

    back on the market beginning with the real Classic Coke.

    It must be apparent that just as prohibition created a criminal population of net harm to America the current ban on the good stuff funds global terrorism etc. Everyone knows this. There is a free market price for heroin and the sooner it is a legal for profit substance the better – big pix wize,

    As to the long term effects of life time usage – something we just don’t have the numbers for today as street drugs are dangerous just by being “street” – like bad moonshine –

    since i mentioned long term effects i’ll close on one of my addictions – demon rum

    the russian men dying in the millions today at 57 is all the data we need in a statistical yet it says nothing for all right it was as fuel for men and tanks at the gates of Moscow.

    Sunday, January 2, 2011 at 1:26 pm | Permalink
  16. starbadger wrote:

    It all depends!

    is usually the right ans.
    the question notwithstanding.

    Sunday, January 2, 2011 at 1:30 pm | Permalink
  17. peteD3 wrote:

    you continue to impress the heck outta me.


    Tuesday, January 4, 2011 at 12:47 pm | Permalink
Wow Shannon, that's really annoying! What is it, 1997 on Geocities? Retroweb is NOT cool!

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