Transverse Myelitis: My Feet Are Baked Potatoes!

This is my story of Transverse Myelitis.
Hint: The floor is lava!

If you’re a regular reader -crickets- you know that on August 11th of last year I was diagnosed with a very rare spinal/neurological disease called Transverse Myelitis. ‘TM affects approximately 1 person in a million. Yes, I AM one in a million but that goes without saying.

House MD Vicodin ad

I’ll accept the Oxy instead. Thanks Doc

If you’ve never heard of Transverse Myelitis it’s not surprising. It’s the kind of thing Gregory House would diagnose.

My primary care doctor had never heard of it. A neurologist in a small or medium-sized city may come across one case in their lifetime. It’s a wicked disease with a sudden onset and 80% of the time no forewarning. If a TM sufferer does have severe unexplained weakness in their legs it can be shrugged off with ‘Jesus I need to get more exercise’ or if they pee themselves before getting to the toilet on two or three occasions consider ‘Fuck I’m getting old fast.’

Don’t ask me how I know this.

I was on disability for a completely unrelated illness before the TM onset. Usual story; A mild-mannered writer, musician, Veteran Burner of 8 years and dangerously fast downhill skier. Okay, not so much the mild-mannered.

One day I was running errands with a friend and slowly became disoriented.  I insisted on making a bank deposit. It was Sunday and no banks were open but why let reality get in the way of a swelling brain? My dear friend TK pulled up to a random building, gave a hobo $5.00, and pulled away from the curb back into traffic. Seems this cunning plan satisfied me. He then drove directly to the hospital. I opened the car door, and  stepped out. On to my face. Seemed my legs were no longer listening to my brain.
Next thing I remember is being in the emergency room with a morphine, then Fentanyl, drip. The pain was worse than:

  • a) 29 Hours of Labor and Childbirth
  • b) Passing a Kidney Stone As Big As The Ritz
  • c) Lumbar Fusion and Recovery
  • d) Rupturing Gallbladder
  • e) All of the Above. Combined

There was a barrage of questions which I answered cogently yet have no memory of. Followed by MRI’s, lumbar puncture, blood work and finally neurologists jacking me up with steroids. By the next morning I was paralyzed from the waist down. Screw that! During my two month hospitalization  I went from all wheelchair to sometimes using a walker in the halls, stopped drinking coffee with my forehead, and ditched the catheter. Unexpected and inopportune releases of natural gas still occur and I have to schedule bathroom visits to make sure my bladder isn’t full, but it beats the hell out of a colostomy bag!
The first two weeks in the hospital were also spent with psychosis and hallucinations. This was a side-effect of the steroids. Didn’t make many friends during that time. At one point I briefly came out of it and was chained, with what looked like dog leashes, to a wheelchair. Remember yelling about contacting attorneys, the police and possibly the Better Business Bureau.
Found out later that my restraints were there for my safety. Not the nurses. Whoa.

TM has other dandy symptoms besides paralysis. Chronic pain. Forever. Nerve damage that causes, in my case; electrical shocks, twitches, balance problems, overwhelming fatigue, nerve pain manifesting as molten lava running from hip to foot, ripping into the tops of my feet with what feels like a dragon’s claws. There are a host of bizarre and ever-changing indications. Hell, my blood pressure permanently dropped 20 points. Went from severely hypertensive and on Lisinopril to having an attention-grabbing low B.P. Told you that the cigarettes would never kill me.
I walk on stilts and my feet are baked potatoes.
Right? How the hell do you describe this shit.
In the future I look forward to brain lesions, respiratory failure -told you that the smoking would never kill me- and a possible slide into MS. The latter scares me as there are a few people in my Facebook support group who have faced it. We TMers wake up every morning not knowing what symptoms will occur that day. It makes us braver, more careful of our health, and perhaps a bit more neurotic.

The Grateful and Positive Scale:  I am NOT tied to a bag for the remainder of my life. The lesion is at C4 and my arms work pretty damn well. Bonus: I did not die within 48 hours of a misdiagnosis. Lots of people with TM are quads or remain permanently paralyzed from the waist down. Too many are not diagnosed quickly enough. The paralysis gets to the chest and they die of organ failure, gasping for breath,  before anyone realizes what has happened.
I’m one of the lucky ones. Two neurologists were on staff that night and both had treated a Transverse Myelitis patient.
It’s called Transverse Myelitis as the lesion crosses the spinal cord. The lesion transverses the spine. Myelitis is an inflammation of the spinal cord. For an unknown reason your immune system decides to attack and destroy the mylan (the sheath surrounding the spinal cord), instead of sitting in a corner or working itself up over a flu shot.

There's a Baked Potato Inside Each One

There’s a Baked Potato Inside Each One!

I had to leave my home in Nevada (because I shot a man in Reno, just to see him die), gave away more than half of my possessions, and moved in with -gulp/shudder/eeeek!- my mom. Life is lived in a small bedroom at the back of her house. I only get out for numerous doctor appointments, and now Physical Therapy. P.T. is awesome by the way. Painful, but awesome. The first positive feedback on a miraculous recovery that I received, from anyone, in 6 months, was from one of my P.T. therapists. He said I was serious and making great progress. Whoop!

Unfortunately there is no one in this town that I know. Can’t drive a car so it feels like I’m a prisoner. My boyfriend of 3 years came to visit me during the 5th week of my hospitalization, my legs were still paralyzed.  He said he’d met someone new.
Honestly, I wish I were dead most days.
Between pain and loneliness, being fairly certain that no man will ever want me again, and no longer having a home of my own, life can be a bummer. Okay it sucks.

It took six months for mom to admit that her eldest daughter would be mainly wheelchair-bound for the remainder of her life. My mom is awesome, but she’s the poster for ‘We’ll Simply Ignore it and it Will Go Away Syndrome’. Finally this week she took me to Cripples-R-Us, and we made the leap to reality.

Those bastards wanted $300.00 for the cheapest manual wheelchair model, on sale. Yeah right.
After getting back home I spent close to fourteen hours researching all kinds of chairs online. Actually found the one I test drove and ordered it yesterday. $166.00 fully assembled. I rock. Plus, there’s money left over to pay on the collection accounts with various physicians and hospitals, and two chocolate bars. 70% Dark with Sea Salt.
The chair should arrive on Tuesday. This has cheered me immensely today. I’ll do the daily at home P.T. regimen for the rest of my life, but there’s no way I will walk more than a few steps, with a serious gait weirdness. Can do about 5 minutes in the house, with the Cadillac (a cherry-red walker with brakes and a seat) before the pain skyrockets, feet go completely numb and legs give out.  You better believe I’ve been working it though. ANYTHING to get better and get my life back.

Still, there are situations that most everyone with a spinal cord injury faces. Mainly, I don’t know what the fuck I’m doing. Haven’t saved enough to afford the 20% co-pay for the power wheelchair prescribed by the neurologist. The nerve problems in my hands and arms sometimes cause them to cease functioning correctly. A manual chair is just fine with me now though.
Hey baby, can you give me a little push? -provocative wink-
Where do I go for help? Is there any? If it were not for my mother I’d be homeless. How many people do not have this opportunity? What happens to them? Questions pound my head every waking hour.

Worried about transportation in this very rural area. Worried about finding a place to live. Worried about a motorized wheelchair. I’m too young for everything from low-income senior housing (jesus that sounds depressing eh?) to meals on wheels.
How do I get to the barrage of doctor appointments that TM brings? They’re all in Folsom and El Dorado, a half hour drive. The neurologist, Dr. Mengle, sorry Dengle, is in Sacramento. An hour away.

Force my head to consider the progress and good things. Never did purchase AFO braces for my feet and legs.It’s too late now. I can stand on a foam cushion for 20 seconds, and once, on the floor with my feet together, eyes open, for a full minute.
The Lyrica helps with the electrical shocks and best of all I hardly ever twitch now. Words no longer fail me, unless it’s in response to a surreal utterance by my daughter.
Continue working on getting the pain meds balanced and fine tuned. Right now I’m a walking DEA raid. It’s gonna stay that way. Considering a large stock purchase in Milk of Magnesia.

Found a cool psychologist (makes a stylish bookend to the psychiatrist) here in Hangtown. He’s helped convince me to start a screenplay (been thinking of this for a few years) and use this to begin a new direction of life. As with the Transverse Myelitis, I DON’T KNOW WHAT THE FUCK I’M DOING! Learning though. Outlining the story, reading scripts, trying to take the director outta my head and remember my only job is to write. For now.
Beats watching Wheel of Fortune and eating Pringles all day.

Get Up. Get Out. Get Better.
Brilliant isn’t it?
These are the words of Lynne Murray, the nifty guy who rolled up and introduced himself to Sandy and I a few weeks ago, as we sat sipping coffee and making a scene at the Cozmic Cafe. Lynn heads a group called the Placerville Mobility Support. There are meetings the 4th Monday of each month. I can hardly wait.

TM sexy~Miss R

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46 thoughts on “Transverse Myelitis: My Feet Are Baked Potatoes!

    • Awwww Paul you’re an awesome guy. Trying NOT to dwell on the negative now and find a way to work with this new life. Figure I fell down a lot when learning to live the first time around heh.
      Best wishes are welcomed. Especially from you. Be well and get ready for Spring!

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  1. Despite the horrors of all this, it sounds like you’re starting to make a new life for yourself, and turn in some new directions.
    Wouldn’t expect anything else from you, Miss B.

    Rock the hell on!

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    • Hi Gorgeous! Just thought about you yesterday. Settled in to read the screenplay for MASH -excellent stuff- and ‘Kill The Director’ by The Wombats came on the playlist. Started laughing at the irony, then thought of your eminence; the godfather of terrific tune-age and one of the only people I know who digs The Wombats.
      Hmmm am I the fairy godmother of terrific tune-age?
      Not even going to keep going with that one.

      Thanks for the big thumbs up and encouraging words. I always love them, and will always need them.
      Hugs to you my dear friend, and…. ROCK AND ROOOOOLLLLLL
      xxx

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  2. That all sounds like far too much fun for one person. Maybe you should share.

    Life can take such an unpredictable path. We truly never know what might be in store for us, and it’s not as if anyone asks us. You get what you get and somehow you have to find a way to deal with it. I guess some people just never can, and you can’t really blame them. The good thing is you’re better off that you could be, though that’s not a lot of consolation. You seem to have been making some pretty good progress lately, though.

    I used to write screenplays. Never sold any despite having a few agents. Do you know about Francis Ford Coppola’s http://www.zoetrope.com/ ? It used to be a good place to network and get reviews of your work.

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    • Binky! Did Peter tell you I’m interested in a rocket-powered pimped-out Wombie Wheeler for Burning Man this year? Hope you find the time to tinker about with the idea.
      Had no idea you wrote screenplays! Am impressed. Very impressed.You never cease to surprise me, and it’s always with a smile πŸ™‚
      How did you learn? Did you have story ideas percolating and then learn to express them in a screenplay format? Or, did you get the standards and composition rules down the work on a story?

      Haven’t tried the Zoetrope site. Thank you for the tip. I remember when Coppola started Zoetrope studios.
      Have you ever seen ‘The Kid Stays in the Picture’? It’s about Robert Evans, head of Paramount in the 70’s and early 80’s. Lots of great stuff about Coppola and The Godfather. No love lost between the two -grin-.

      Funny, as a teen I spent every last dime on going to the movies. Even spent solid silver 1940’s coins from my coin collection/ That’s how much movies meant to me. It helped to be one of the ostracized and bullied kids in school; what else would I do on the weekends?! I even loved the cheesy crap-fests that were 1970’s B flicks, always second on the afternoon bill. First at the drive-in ha.
      In those days I dreamed of writing the musical scores for films, being a movie star myself (hey, kids are resilient in their dreams) and spent week-day evening performing and working in community theater.
      By junior year of high school it occurred to me that I couldn’t act for shit heh. Took the eggs from the Acting classes and put them all in one basket: music.
      It’s been 30 years since reading a script.Do you have any personal suggestions?

      Why don’t I know about your screenplays? You are a quiet Wombie when it comes to personal achievements. We should get Andro on board to film one of your scripts! Deb can do the story boards.
      Tell me more!!!!!!

      xxx

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      • I think Binky’s secretly working on a rocket-powered escape velocity rocket for you. Oh wait, he’s me! So I guess I am. Don’t tell anyone. You know, in case it doesn’t actually work out.

        I learned just by reading. I had many ideas. Most never went anywhere. Finished maybe 5 or 6 scripts, I don’t remember. I guess I was inspired by the power of movies, and also by the fact that the story behind so many of them is very poor. And I thought I could do better.

        Read every script writing/screenplay book they had at the library. Read the old column in Writer’s Digest when it was being written by an unknown J. Michael Straczynski. Back then Syd Field was god. Don’t know if his theory is still valued, but his analysis of a script was quite good. Didn’t buy all of it, but his Screenplay & The Screenwriter’s Workbook are a very good start. And I kept up with Weekly Variety at the lib. I’m sure you know all that though since you were in the biz.

        Don’t think I saw the Robert Evans picture. Did read George Lucas’s bio, Skywalking, I think it was. There were some unkind reflections on Coppola.

        It’s too bad you didn’t have some of those coins now! And all those other things from our youth that are now worth a fortune. Acting certainly wasn’t for me. And I have no musical talent. But writing I could do.

        Funny, but I was into cartooning long before screenplays, but screenwriting took me to Zoetrope, which introduced me to wombats, which, well, you know.

        I have a number of produced script files. Can you still find scripts on the web, or have those sites been all taken down? I found reading real scripts of the type I was interested in writing was quite helpful.

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        • Binky (and Evil Twin PDM), sounds like you followed the same path as I’m taking. When writing for The Frog, then that other network, my scripts were basically shooting scripts. Everything I produced, and/or worked on was a short piece of film or video. No need for intensive character development or worrying about the 2nd act heh.

          Am getting scripts off of script-o-rama. Huge collection. Anything film in particular you’d recommend?
          Someday you’ll have to explain that connection between Zoetrope and Wombats hehehehe

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          • Most of my script reading was from the 80’s or early 90’s, so most of those probably aren’t even considered relevant these days. And I can barely remember which ones I read.

            In a general sense, I’d recommend something that was successful and close to the type of story you’re thinking of writing. It might help you with seeing the structure they used, how the characters developed, how they used subplots, etc. I don’t know how you write, but it does help to have a good basic plot and structure worked out before you actually start writing the script. I would usually start with the plot, and then the main characters that are needed to express the plot. Once the characters come alive for you, the actual writing part isn’t all that hard, I found.

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  3. Umm..I’m Paul Holland; of my friend Jim O’Sullivan’s- Gingerfightback site.
    He’s kind enough to post my poems and you were kind enough to post your sparking comment, about my last posted poem.
    My fingers are Stiff and Sore With The Cold
    Sounds like you’ve been picked up and shook as a ragdoll by a puppy. But also you’re now giving some puppy training.
    Not that the wee bastard isn’t going to chew on your slippers for a while yet but at least he’s beginning to realise who’s boss.
    I’m looking foreward to your first film.
    Paul

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    • Paul, you are a kind-hearted, and deeply thoughtful guy. Promise this information won’t get out.
      Everybody has good days and bad days. It’s the sum of the equation that tells the story. My story has a happy ending. This should shock and surprise friends (readers and acquaintances) who know me as Queen of the Misanthropes.
      Let’s face it, there’s nothing like a surprise party!

      Many thanks for your insights, they’re spot on. I’m ready to wag the dog πŸ˜‰
      Here’s cake in ‘yer eye!
      xoxo

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  4. I think I saw the last picture on the mudflaps of a semi with handicapped plates πŸ˜‰ … man, this sucks to hear about it. After being blog friends for a few years now, I understand how this might beat the shit out of you, but I think you are a strong enough person to beat it back. I think you can fight the mental part of the disease better than anyone I know. .. best wishes dear.

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    • Hi Sweets! How are you? Read one of your posts a few weeks back. Trying to keep up with all the great writing out there is stressful on it’s own. Ever feel that? Overwhelmed by the WP subscription alerts that fill up the mailbox?
      You KNOW what I mean πŸ˜‰ We should hit an N.A. meeting… Neurotics Anonymous.

      I think you’re right about the mental part. Those of us who have fought to simply stay alive have developed some tools. Some days we’re actually healthy enough to pick the fuckers up and use them!
      Thank you for the reminder.
      Seems we both have the strength to make it though. All that scar tissue has to be good for something right? Hope you’re not only hanging in there, but kicking ass and taking names as well.
      So good to hear from you.
      Love, Lithium and Lyrica
      ~R
      .

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  5. Rachael, you blow me away. I knew all of this, but reading it start to finish… unbelievable! You are a rock star: your humor, your bravery, your honesty, your ability to connect with others… did I mention humor? I know you’ve struggled with depression, and who could blame you… BUT, no more talk of suicide. We would all be worse off without you. (let me clarify: if you need to talk about those feelings, email me doll baby, but don’t get serious about it. I’d kill you). πŸ˜‰ ((giant hugs))

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    • Ha! Hi Dawn it’s ALWAYS great to see you. Appreciate you taking the time to read the post.
      Have had some wonderful feedback from others in the TM community. We have an epic and lively support/bitch/hysterical laughter/information page on Facebook. Seems that everyone who has this damned disease must be on there lol. Many were happy just to see someone write about TM. There is so little information available on Transverse Myelitis that anything we come across is gobbled up.
      The darkest days I try and remember to sign on to FB and hear from everyone else. There’s nothing like following the amazing progress of a 4 year old girl with TM, or reading from the mom of a 24 year old who recently passed due to this damned thing, to make me feel like a fucking whiny fool.

      You give me too much credit my friend. Oh sure, I’ll take some. My ego runneth over, Yea though I walk through the valley of dolls…

      Thank you for the kind and positive words. We all need those. I LOVE them πŸ™‚
      If you want to kill me get in line. Just heard someone call C402… It will be a while until my number is up
      Love you toots!!
      I will get ahold of you when the sky is dark, I promise.
      ~MUAH!~

      .

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  6. First of all we will grab that asshole boyfriend of three years and tie him to a trolley (one we prepared earlier with spikes sticking in his butt) remembering to gag him with six month old hobo underpants, then as we give him a really hefty push we will rush down to the bottom of the cliff, where, if we are lucky enough might just see him as he hits the point of no return 😦 Yes well you can imagine the scene and unlike Roadrunner he won’t be so lucky πŸ™‚ Yaaaay. How do you mean no bloke will want you? I mean come on… You’re awesome and don’t forget it πŸ™‚

    You’re one of the bravest ladies I know, lovely with it and if that last graphic is anything to go by, naked in a wheelchair and still very naughty then wow, nothing to worry about at all so no more of that blokes won’t fancy you stuff from now on or else? And don’t think that I won’t give you a good thrashing (paddle in hand) if you mention it again, because you know that I will πŸ™‚ Yes a smile, and there is nothing like thrashing a nice bottom is there? πŸ˜‰

    I will have to start calling in here more often, I never get the updates but that’s no excuse, so how about I pop over here whenever I feel like it, I won’t bring the Zombies with me though as they tend to eat people 😦 You get busy with the screenplay, perhaps a thriller or something incredibly kinky, there will be plenty of readers for the latter one that’s for sure, I mean when I add a blog with a mundane title I get about ten followers turning up, but then add something with a sexy twist and bloody hell it’s a stampede πŸ˜‰ Anything you can think of, well with your wicked nature I can imagine all kinds of adventures, and Casanova with a Pinocchio twist could be something to think about, I bet the characters lady friends will be telling lots of lies in that orgy-fest πŸ™‚ Well I only said πŸ™‚

    Hey Rachael I am and will be thinking about you my sweet and dear friend, keep that beautiful smile and know that we all love you πŸ˜‰ πŸ™‚

    Andro xxxx

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    • Andro, you leave those creepy creatures at home! I shall keep your fighting words close to heart. Burning Man is only 5 months away; who knows what delightfully delicious young men may crave the company of The Rambunctious Miss R?
      As your the ex-boyfriend, I hear the Karma Bus coming and the driver is pissed. Death by Karma! Okay, perhaps a nice maiming. Death is pretty harsh.
      Saw pictures of his new girlfriend. Yikes. Kill It With Fire!
      It has taken me 6 months to get my head around the limitations of living with TM and at the same time deal with being abandoned, and used. So be it. Think of the scene in the Lion King. After being hit over the head by Rafiki, Simba asks why?! Rafilki answers, It doesn’t matter. It’s in the past! hahaha just love that bit because it’s full of truth.
      Thank you for your support Andro. Your dark and whimsical wishes mean tons to me. Big smiles for YOU, and a hug for the smiles and strength your comment has brought to me.
      xxx

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      • You are welcome my sweet and dear friend, and as for Burning Man you will get there, just make sure the Spankometer is up-to-speed when you arrive so that you can give those guys a really good thrashing πŸ™‚ You know they enjoy it when you have a whip round πŸ˜‰ lol Naughty πŸ˜‰

        Andro xxxx

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    • Bearman! Just yesterday I was wearing a green wig and oddly, thought of you heh. 20% down will be somewhere between $300.00 and $600.00. Medicare has included El Dorado County in their competitive bidding program. This means I cannot use either of the local family owned hospital/medical supply companies. No, a huge faceless corporation in Sacramento won the contract. So, my choices are very limited and all must be done through them. Another topic for another post I think.
      Placerville DOES have a special needs short bus. No comments. After your application is approved you can get transport within the Placerville area, with 24 hours prior notice, for only $5.00 each way.
      El Dorado County doesn’t have a comprehensive bus service. Right now my source of transportation to doctor/medical appointments is mom.
      Hope to move into my own apartment within a few months. There’s a waiting list for the three low-income apartment buildings in the county.
      Life is topsy turvy! Learning to roll with the changes is a must. For now, I’m grateful to have the manual chair. It’s amazing!!

      Hope all is well in the Cincinnati area. Still getting wacky weather?
      You’re a sweetie for checking in. Big Hugs for my green haired cousin!
      xo

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  7. OMG, lets just start by saying 70% Dark with Sea Salt chocolate is my favorite too πŸ™‚ Secondly, tell those friggin specialists that you would like to make some of your appointments via SKYPE. There is no need in this day an age to have to travel that far to see a specialist with that kind of illness if it isn’t 100% necessary. If he needs to do some touchy feely shit, organise a local doctor to be present and relay the info. Sheez, if they can find a plane in the middle of the ocea…oh wait, never mind.

    Is there anyone doing stem cell research on TM? You should volunteer your services for the good of mankind and Reno!!!!

    I’m really ,really hoping you overcome this simply nasty disease, the world needs a decent super hero .

    Sounds like your mom is really cool. I’m picturing her like the mom from Almost Famous πŸ˜‰

    xxx

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    • Loon baby! You are a paramount example of epicurean delights. Ooooh that chocolate rocks eh?is the damn bomb isn’t it? Naturally I will eat an entire large bar at a time. Let it melt in my mouth which is atrocious for my teeth but the best way.Everything’s bad for you, so throw caution to the wind!

      In the stem cell research YES. There are a tiny amount of researchers working on this The Transverse Myelitis Association, the only national TM organization, uses their donations to fund research.
      As the disease is uber rare the major drug companies have zero interest. No profits so no R&D.

      I offered my body to science -at least THEY accepted- and Johns Hopkins in Baltimore accepted me for clinical trials on an MS drugs and potential P.T. therapy. After checking flight costs Johns Hopkins reveals that they had no housing available. There is no fucking way I could afford to live in Baltimore for 6 months. That was that.

      Mom is the bomb. despite my good-natured yet snarky descriptions, she deals with the bouts of tears, frustration, endless drives to the phalanx of physicians and sometimes brings me coffee in bed. Most morning take two hours f or the meds to kick in and pain notching down for me to get up and function. An unexpected bonus for the bladder retention πŸ˜‰

      The neurologists have to poke and prod you to test reflexes, or lack thereof, and order expensive MRIs. The pain management doctor must be seen monthly because my pain meds are addictive, like I fucking care about THAT right now, and the law requires a written prescription every 30 days. Also random drug tests to make sure you are not abusing the stupid things.

      Stupid medical system is ridiculous., You are so right. Teach me to test the reflexes. Schedule the MRI’s. Mom is a nurse with 40 years experience for crissake.

      Oh, the points you make are so right. Oh the chocolate you adore is so right. Loon, you’re clearly… Right On!
      xo

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        • Great song Loon. Have two counting Crows CDs. Always think of Baltimore by Randy Newman as well.
          Hmmm that city seems to bring out the minor keys and loss in songs and writing.
          No wonder Poe made a home there.

          Listening to your tune again. Apologize for the tardy reply.Should have made a phone call…

          Bad Rachael!
          No Chocolate!

          xo

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  8. You inspire me doll. I know you only as the person who I met online at a TM (Transverse Myelitis) group on Facebook. I was immediately impressed with your smart-ass, honest and witty remarks. I am a fellow sufferer, going on 8 years but my pain levels are nothing compared to yours. That is the fun and fucked up fact of TM. It affects everyone differently. I spent seven months in hospital, nearly died twice and emerged, luckily, with the ability to walk with a cane. I have intense burning in my feet and about 30% paralysis from the waist down. I consider myself lucky, really I do. One cannot emerge from the shadow of TM and it is the typical ‘but you don’t look sick’ condition. For those of you who are long time friends and followers please know this. You know her way better than I do or will. I am in Toronto, on disability and will never get to meet the divine Miss R in person. I can only tell you this. The next time you sit down to write, do me a favour and before you start, try putting your feet in the hottest water you can stand. Then plunge them into ice cold water. Do that five or six times. Then try to remember the worst flu you have ever had and then try to concentrate on your writing. Oh, and do all this while being as depressed as you’ve ever been and in constant pain on a scale of 8 out of 10. This is what TM does to a body. It doesn’t go away, no cure, no known reliable diagnosis and virtually no help from governments who don’t recognize this one in a million disease. You will never meet anyone but her who has it or even knows about it, including most doctors. Miss R will be embarrassed by this but I bet she would be the last person to expect pity. I ask you to Google Transverse Myelitis and see what she is up against. And now back to your regularly scheduled program, the YoYo-Dyne Propulsion System. Hugs Cara Mia,

    Dave

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    • Gomez,
      this may be the best sweetest and most moving reply I’ve ever received to a post.
      It surely takes another TMer to appreciate this peculiar, exceptionally destructive and unknown disease.

      The description you give of your own pain make me cringe. Funny how we measure what ranks between 1 and 10 on a pain scale after dealing with the forever torment of this crap. 10 is now curled up in fetal position, on a gurney in the hospital, with morphine pumping from an IV bag. A 9 is agony with your hand on the phone to an ambulance. Eating broken glass is a 1 heh.

      We both consider ourselves lucky because we know of many others who are in wretched condition in comparison to ourselves.

      Words cannot express the gratitude for your beautiful, painfully honest reply. One day at a time right? I spent two months in the hospital, you spent 7 and came near to death AFTER immediate onset. Yet we have both read of folks who were released after 3 days! Damn glad you made it through. You’re one of very few in our FB support group who works with the dark humor needed to cope.

      Your words made me tear up. Thank you again. May you have a lovely and pain-free night.
      ~Cherie

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        • Binky,
          yeah Dave’s pretty cool πŸ™‚ His description was vivid and real. It was pretty amazing, and the utmost of kindness, to even check out YoYo-Dyne.
          You know me. My misanthropy is the hard shell covering the tasty marshmallow insides… and my belief in the innate goodness in most people.
          Wombies and Whoopie!
          ~R

          Like

      • Hey Rachael, you should do a Transverse Myelitis machine at the next Burning man? Big hot tub of water, next to an icy bucket . In out, shake it all about. Charge $5 for the experience and get that electric wheelchair you so need. Oh and add the whacking machine in for a bit of light relief πŸ™‚ Just a thought….

        Like

        • Loon, this is an idea who’s time has come! Not to mention I can use the $5.00 to purchase ice. Ooooooh ice is a fine commodity out there.
          Burning Man allows no cash with the exception of ICE and a coffee stand that is located in Center Camp. Otherwise it’s a Gifting Economy, and many times a Trade economy. Gifting is how the majority of us work it. This is the point πŸ™‚

          Am already planning an interactive exhibit to placed on a random spot on the playa.
          It will consist of a washing machine, which will be tweaked to run by riding a bicycle. Inside the washer tub will be a couple of cement bricks.
          I shall call it Make Your Own Techno!
          or
          Two Boots in a Dryer! This would be if I can’t locate the cement.

          Tha thumopTha thump Tha thump.
          Hell you could adjust it for Dubstep without a problem. Will let you know how it goes πŸ˜‰

          Like

  9. Trying to catch up on everything I have missed over the week-end, I read this and think you and I we are a pair. A pair of what, well I am not sure but we are a pair.

    This won’t pass, but new directions? Yes, that might be worth chasing. Talent is only wasted if we ignore the call. WTF, why not, right? We cannot change what is handed to us, we can only suck it up and figure it out.

    I am here, always I am right here.

    Like

    • Val we are two of a kind. To paraphrase your words, I’m not sure what kind ha.
      Encouragement is good. You giving a big thumbs up to a new direction means tons.

      I am here for you as well my dear friend. Much love for taking the time out from your own incredible torment right now, to spend a while here.
      ~Hugs~
      xo

      Like

    • My Philosopher, you are a darling. Speaking of chocolate, that devilish, delicious and divine treat, I have consumed my weight in the stuff during the past 48 hours. No small feat considering the extra 20 pounds already on my fabulous curvy frame.
      So much for resuming the diet today. Ate about 500 calories, without starving, did my full regimen of exercises and stretches and then…Disaster struck!
      Those evening cravings are the worst πŸ˜‰

      Many thanks for stopping by!

      Like

  10. Pingback: Transverse Myelitis: My Feet Are Baked Potatoes! | Blasphemous Rumors

  11. Bummer … absolutely a bummer. But on the bright side, your personality is still in tact, which is helping you deal with it. Well, at least from our perspective, but we don’t witness the toll of the daily grind. Meanwhile, had to check in as I’m trying to get back into the flow after chores of packing and unpacking. Hang in there!

    Like

    • Hi Frank!!
      Glad the horror of the actual move is done. Now comes the Romero version of unpacking all of your stuff ha! Just saw that you’ve posted a few things.
      As usual I’m behind on reading my favorite writers. Of which you are one, of course. Will cruise on by today.

      Thanks for the fighting words! No one can kill an embedded wacky personality. Many have tried. all have failed. Buahahaha
      xo

      Like

  12. Try to get Medicaid. I think you can if you reach 2k in medical bills. Maybe social services can help if you ask. My state has a Special Assistance program for people at risk of being put in a home. Otherwise I couldn’t afford an apartment with just SSI. Maybe you can get Section 8 because you’re disabled and have a kid. They put priority on folks with kids. Good luck!

    Like

    • Lisa, you’ll love this: I have been on SSD for 6 years already. A completely unrelated disease. My income is $1,000.00 a month (note: If you are self-employed do NOT design your retirement around 401Ks, IRAs and stocks. Pay into the damned SS). At my income level the state of Nevada said I made $70.00 a month TOO MUCH to qualify for Medicaid. Nice eh? Oh, and there are 10’s of thousands of dollars I owe in Co-Pays alone. Medicaid is based strictly on income.
      It appears that Section 8 is being phased out. Am in Cali now -living with the parents- and they have not accepted applications for Section 8 in over a year. Neither has Nevada.
      I have 3 applications in for low-income/based on income housing. The waiting lists are at least a year. I’m not 65 so don’t qualify for shit. My daughter is 20 and off at college.
      Some people fall through the cracks. You can tell people you know one πŸ™‚

      Have applied for Medi-Cal, California’s version of Medicaid. Hopefully their criteria are less stringent. Found out that individual states have differing income levels for qualification.

      SO happy you have a place with SSI. I know what the income is for that program. Feel like a Rockefeller in comparison heh. Good luck to YOU.

      Luckily I have amazing, loving friends. As of last night my Spanky’s Wine Bar crew, and people I know ONLY on FB, raised enough money to get me a used power chair.
      I’m stunned and still in tears of shock and gratitude.
      New blog to come.

      Be well Lisa and thank you so very much for the upbeat words, suggestions, and taking the time to stop by
      xoxo

      Like

  13. Hi! Just found your blog through the hop with Adam this week. Wow. I have Chairi Malformation and Syringomyelia which have a variety of things that can go along with them for myself and others, but you….YOU are a warrior. Neurological shit sucks regardless and attitude has so much power. I admire your strength and love your humor.

    And that boyfriend? Yeah, in the words of my sister wives, what a “douchecanoe” who needs to be “dickpunched.”

    Like

    • Deanna,
      first I gotta say that I dig your writing. Secondly, I am going to use Douchecanoe as a proper verb from here on out.
      Yeah, we had been having some problems but I didn’t realize that the majority of them were due to the boyfriend cheating on me. He was simply waiting until the girl he was chasing let him into her bed. Within 24 hours of that I was history. To think I still wanted him after that. Still hating myself for the low self-esteem thing on that episode. eeesh. Live and learn!
      Well, I WAS sick. Sicker than usual. Like a monkey holding on to a tree branch he made sure I was still around until he could firmly grab ahold of a new branch. Hag, I meant hag. Oh and whore. Whore branch. Later claimed she was just a friend.
      Really? When was the last time you had a ‘friend’ of the opposite sex that you spent time with, avoided your lovers’ calls and textxs and weekend plans for? Oh, and you never bothered to mention them? I’m thinking…. Never.
      You’ll be happy to know that the Karma Bus has nailed him twice since this happened. Go Krishna!
      Not that I’m bitter. Instead, I’m better!

      Okay I had to look up Chairi Malformation and Syringomyelia. Have you had symptoms since childhood or did it only manifest later on? Is there hope of surgical help or is that not an option?
      You are SO right about the neurological thing.
      Major suckage isn’t it?

      YOU are the warrior. Obviously your condition began at birth and you’ve dealt with it for years. The humor? Oh we’re two peas in a pod on that one I think., Tje potential future of an early death to makes a person funny or just freaking morose and constantly climbing the cross. the latter I stay away from. Hey if I want morose I can tap into the dark abyss of my neurotic head any morning at 2:00 am.
      I KNOW you know what I mean.,

      Gonna keep up on your posts. Glad to meet another fine human being with an unpronounceable Wheel of Symptoms neuro-disease. We gotta stick together.
      Like spinal fluid and brain swelling. Yeah. That’s it.

      Take care Chicita! xoxo

      Like

  14. Wow!! This is powerful stuff! I am a tm’er. 20yrs last month. It is a horrid way to live each day. Although I had a reasonable
    recovery. Still, all the symptoms plaque me as well. Loved how you have described it all. Chin up, one day at a time, all that crap
    people tell us. It sucks!! Just no two ways about it. It has taught me some things about myself that I never knew. If someone
    would have asked me first, I would have gladly told them that I really didn’t care to know that much about myself..:) You rock on girl!!

    Like

  15. Rachel,
    I don’t know what to say about your illness other than I’m sorry you have to go through this hell. However, I do know what to say about you as
    a writer. DAMN, WOMAN. Please write your screenplay. You have so much talent and you are one hell of a strong woman.

    Like

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