Merry Christmas! The Late Edition

It’s been a crazy few months. Wanted to dash off a Merry Christmas and Happy Holidays to you all. This is my favorite gift, from Peter of Wombania

My Christmas Card from the delightful Wombies

My Christmas Card from the delightful Wombies

Taking steps to regain my life back, literally. Really not steps so much as generic ambulation. It’s a start and it’s cooler than bow ties and a fez. The fatigue from the disease is akin to being hit by a truck every single day. The pain too. I ask you all to forgive my absence. The only thing I want for Christmas? A cure for Transverse Myelitis and for all of those who suffer far worse than myself.

Was accepted to the Johns Hopkins Transverse Myelitis program. All set to buy the plane ticket and check in for the first appointment. After much back and forth on the phone it was decreed at the last minute: Β there is no housing for out-patients in clinic programs.
What the hell? Don’t they know who I am? Will work for treats.
Rents in Baltimore? Out of my league. Assisted living options in Baltimore for six months? Throw that in the ‘Brother Can You Spare A Dime’ pile as well. Tried everything possible to find funding. Nothing could be done. No charities for TM, no way to set up a fund or charity for myself. It’s still a dream.
Hell, I still don’t have an electric wheelchair, but I’m saving the gelt up.

Making strides far beyond the original prognosis -rim shot-. Hard work makes for amazing results. I lay about the house all day and exercise. It’s possible in Rachael Land
Was given a roughly 10% chance of walking again. Really? Don’t tell me what to do. I’m better off that way.

May you all have a wonderful, fattening, laughter-filled holiday iced with love and joy. If you don’t see me much it’s because I’m working on a new project, the most important one ever. Crafting a new life, learning to walk and talk and shake it baby.

Tripping the Light Fantastic. With no net.
Walk like an Egyptian? Never!
Dance like a Rockefeller? Hell yes.
Puttin’ on Riiiitz!

Putting on the Ritz

Merry Christmas to All and to All a Good Night!
~Miss R

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28 thoughts on “Merry Christmas! The Late Edition

  1. Rachael, it’s only at these kinds of moments when i wish i were wealthy so i could just pay for the housing in Baltimore. please keep up the hard work – it will pay off. i offer my sincere wishes for a healthier new year. i want you to know that you are an inspiration. this comes with love. continue…

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    • Tony, your words always mean a lot to me. You’re intelligent, twisted and honest. Think we can agree that these are core building blocks of a good person. Going to keep on workin’ it. Barkinginthedark always jumpstarts my inner imp. Good thing you’re around to keep me focused on the outside world, prompt a wicked grin, and let me know that there are good guys still wearing white hats. Nice try wearing black; your superhero tights still shimmer underneath.
      Thank you for the thoughts and always for your words.
      xo

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        • Walter: have looked into the top 3. They all cost money and the one site which had a section geared to raising money for medical bills and expenses runs about $50.00 a month. If I had $50.00 a month extra there wouldn’t be any problem heh.
          Have yet to find one that is viable. Grrrrrr

          Thank you though!

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    • Merry Christmas Dave!
      Damn, a double whammy of Cool; Tony and Guap back to back.
      Hon, I got 99 problems but a lack of incredible people around isn’t one of them. Bobble heads? I’m thinking wood chips.
      Placerville, California: Fargo of the West
      xxx

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    • Awww thank you Don. This is a fantastic line-up. I was lucky enough to meet you, Guap and Tony at about the same time. It’s been a few years and we’re all still here fighting the good fight. With sarcasm. And music!
      Hope you had a beautiful holiday my friend ~Muah!~

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      • You and Tony are just some of my favorite bloggers. If I could help you out financially, I would do it in a heart beat. Anyways, I’ve been to Baltimore a few times, and its a city you would really like. I do hope everything works out for you, and when you can, please keep in touch… πŸ™‚

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        • You bet Don. Funny thing about friends, even those we haven’t met in the flesh, is our unfettered willingness to give them everything we have. This is what makes us who we are. The boost of our own joy at seeing a loved one smile!

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    • Frank you shouldn’t have! Opened my present a bit ago. Have yet to make a comment on your page but it’s coming.
      Just about hit the floor laughing when I saw the owl shirt. Your Christmas post was the most original idea I’ve seen in forever. Forever is a long time.
      As far as spunk? Meh. It’s the

        moments

      when the anger and fear turn into action that get us through. Fighting the battle of self-pity is good exercise πŸ˜‰
      You just don’t see me on the whiny days. Stupid straightjacket.

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  2. Your strength of will is inspirational. You have the empathy and compassion to think of others worse off than yourself. Amazing! Why isn’t there a charity for this condition or at least for you? Proposed app games over on Kickstarter are getting more resources. We should brainstorm this.

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    • You’re fantastic. There’s nothing inspirational about me. If you were to observe the day to day progress and thoughts you’d say…jesusfuckingchrist she’s off her meds!

      I belong to a group of other folks with TM. On FB of all places. It’s EASY to have empathy upon meeting and listening to others in a similar boat. I WILL walk, even if it’s not pretty and there’s a constant probablity of falls. Even if I need a wheelchair to go shopping. The majority of TM patients don’t even have a hope of this. Too many lively, deeply kind, highly intelligent, and smiling people are trapped forever in unending pain and weakness, chained to a bed and a colostomy bag, seeing themselves develop MS and rapidly deteriorating. My case really IS mild in comparison.

      Few doctors are familiar with Transverse Myelitis and when I moved to Cali a few months ago the new primary care doc had to do some research. She’d never heard of it. Luckily my Reno pain management doc had treated two other cases. You’ll find it listed and described on the Chrisopher Reeve Foundation website, and the Wiki page is a direct copy and paste of that information. Mayo and Hopkins both have a web page devoted to the disease as well. So yeah, it’s pretty rare but it’s vicious enough to at least make researchers take note.
      The first case was descibed in 1882, or thereabouts. It isn’t ‘new’.There’s no money in it for Big Pharma or other money-making machines, so it isn’t a priority.

      Unless you’re a celebrity or a cute little kid no one is usually interested in your plight. Humanity as a whole isn’t as caring and concerned as we are. For this reason I’m happy as hell that you said what you did.
      Thank you Tom. Your hysterical Tweets make my morning coffee that much tastier. Your compassionate heart makes me tear up.
      Ya really.

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  3. Oh Rach, I’m so sorry! If I could, I would pay for you housing in Baltimore too!
    When I think of what you must be going through my heart breaks. If there is anything I can do for you just let me know.
    Love and hugs xxx

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    • Deb, just keep me happy with Wombie art! I’m lurking in the shadows and try to keep up with you delightful pieces. It may not be possible to comment, but know that your imagination and virtuosity are appreciated πŸ™‚

      We take obstacles one minute at a time, or we’d be overwhelmed and lose hope. There are several bad scary things that could very well develop as a reuslt of this disease. To dwell on them would kill the spirit of healing. If it were not for beautiful people like you, that dark path would be way too easy to take. I never expected the kind words that have come to visit the comments section today.

      I feel guilty for even mentioning the TM now, it was just a kind of update as a few peeps have emailed me.
      It’s difficult to accept compliments or kindness from other people. Maybe as creative souls we all have this sore point. What is the old saying about art and pain? -grin- I believe a generous dose of crazy goes into the mix too!

      Love you hon. Let me know if I can do anything for you okay? My shoulder may be unsteady but it’s there

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  4. I’m glad you liked my card, but I wish it could bring you more than a smile. Maybe you could rent out your Wombies to entertain rich senors or something. It’s lousy that you couldn’t get any affordable housing near the clinic when that treatment could be life changing.

    I’m so glad you’re making progress with your walking, though.Hopefully it does mean your case, however bad it is, is better than it could be and that you will be able to continue to improve. Slow and steady and you’ll get there!

    Hope your holidays are as much fun as they can be with TM! (Hey, TM also stands for Thomas Magnum from the old Magnum P.I. show. I bet you could have a lot more fun with that TM!)

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    • Binky! Happy New Year my friend.
      You’re so right about the the TM. I AM so much better than even a month ago. Many days I cry and other days the anger boils over. The truth is I’m a lucky little wench πŸ™‚
      I always had a crush on Tom Selleck as a kid -wink-
      xo

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  5. Now if the clinic was in Australia you could stay with the Loon. Sheez Rachael 2013 was a bummer. i think you need to do some video clips and post them on YouTube about this atrocious disease. Use your creative genius to make them go viral and get this baby walking. Hello, easy to win the TM keyword and just think of all the suffers you could cheer up in the process. Hows about a Carole Bayer Sagaesque dtty for starters …… this song needs a make over.

    I have every finger and toe crossed that this is just a minor hiccup in your world.

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    • I LOVE this song. Loon you’re a genius. Adding it to my ‘Happy’ playlist.
      Hmmm haven’t worked with making ‘home’ videos. Andro has it down to a science. May have to visit the crypt and get some pointers.
      Have a great holiday Loon. ~HUGS~

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  6. Hey Rachael it is nearly midnight here
    and I wanted to swoop over to yours and
    give you one πŸ˜‰ Hey a big hug cheeky πŸ™‚

    I have some sticky chocolate muffins and
    a new barch of juicy wine gums too so get
    ready to indulge in everything I say πŸ˜‰ lmao

    Yes the handcuffs are novelty ones but they
    can easily be adapted for you know what πŸ˜‰

    Okay I am being good again, have a wonderful
    evening with lots of hugs, kisses, cuddles and a
    load of scrumptious chocolates and Champers πŸ™‚

    Be good, or wicked, and naughty or nice, or else? πŸ˜‰

    HAPPY NEW YEAR 2014 RACHAEL πŸ™‚ πŸ˜‰

    Andro xxxx

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    • You always make me smile and feel so wickedly weird -grin-!
      Been thinking of you Andro and sending you smiles and dreams of stiletto shoes, women in chains and things that go bump in the night .. hopefully they’re delightful and not deranged xxx

      Like

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