Stuck for Good?

“And still, I wait in the Void between an in-breath and out, snared and tangled like a Shade who sees life all around but cannot touch or sob or walk back into her life.”

As I read this description of the main character in Gail Strickland’s fantasy, “The Night of Pan”, I felt like someone was finally describing me.   I’ve been stuck for 6 1/2 years with my Cervical Dystonia diagnosis.  However, since my appointment at the Mayo Clinic in August, I have never felt so lonely.    A prisoner in my  body and in my own home.

Why would I feel even more trapped now than I did before?  On that fateful day, the neurologists said they weren’t sure that I had been diagnosed correctly.  While this really shouldn’t surprise me, since many of us hear these words at one time or another, it really hit me hard.  If Mayo Clinic doctors don’t think I have Cervical Dystonia, what have I been suffering with all this time?  What if the treatment of my symptoms back in 2010 actually created my “disorder”?  Grappling with the possibility that I may have been robbed of these vital years of my life due to a misdiagnosis, it knocked the wind right out of me.

In order to help them make a proper diagnosis, I was told to do two things:  take 3 tests (an MRI of my neck and 2 EMGs) and taper off all my medications.  With the help of my U of M doctor, I’ve been slowly weaning off my prescriptions.  And that’s exactly what has turned my life upside down, making me feel like I’m not anywhere close to living a life I once cherished.

So what happened?  I got myself off the Klonopin without significant withdrawal symptoms.  But once I started removing Tramadol  and completely stopped taking the medicinal cannabis, my days became a life sentence.  You see, when I was taking all 4 of my painkillers and muscle relaxants, I had to nap in the morning and afternoon because I was so tired each and every day.  Now each minute drags out.  What am I supposed to do with all of this time on my hands?

My neck pulses with a burning pain.  That same pain sears through my shoulders and upper back, with no medications to help manage the pain.  I thought living with an average pain level of 7/10 was difficult.  And that was with 4 medications!  Hating the site of my bedroom, I twist and turn after crawling into bed, unable to find a “comfortable” position. Every night since I stopped taking medicinal THC and Tramadol, the pain has woken me. So I do what we’re not supposed to do.  I continue to lie in my bed, hoping that I will eventually go back to sleep.   Waiting.  Wishing.  Praying that  I’ll finally be able to stop hoping and start sleeping.   Yet, I don’t.  Do you know how frustrating it is to not sleep at night or during the day?   This pain and inability to sleep is compounded by having daily headaches that are different than they were before.  But just as painful.  While this insomnia caused by my chronic pain isn’t a new issue as I’ve already seen 3 sleep disorder doctors, I’d started getting 7 hours of uninterrupted sleep during the month I was taking the Medical Cannabis.  So I’m left waiting.  Again.

I long for things to do.  For people to interact with.  For Someone to be with me so I can be a better mom to my furry kids.  For someone who can give me some answers. For the ability to yawn.  For a life with purpose. If each one of us has a purpose, I’m dying to know what mine is.  I can’t imagine it’s constantly trying to figure out what to do with my time.  Read, go outside, listen to the radio, watch TV, repeat.  This isn’t the life I wanted, nor is it a life I’d ever wish upon someone.  If anyone thinks this sounds great, I’ll gladly trade places with you. I’d give anything to have my life back.

This may all sound depressing.  It is.  I don’t have a lot of hope right now.  Two-thirds of the tests I can’t have done until October because all of the Botox from my July injections has to be out of my system.  Given the fact that Fairview and my insurance company won’t approve a return visit to Mayo, how am I supposed to move forward once I have the results back from my tests?  More waiting until I can change my insurance plan?

Instead of my usual hopes, I’ll leave you with this, a song I’ve been listening to a lot these last couple days.  I truly hope each of you is living in the light because I’ve had enough darkness to last a lifetime.

Help Me Find the Way

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14 thoughts on “Stuck for Good?

  1. There is nothing I can say to help you feel better. I suspect it doesn’t help to hear how sad your situation is and how disappointing it must be for you. You are in my prayers. Please, God, help her find the answers she needs.

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  2. Oh no! Wow. I’m amazed you could even write with all of that pain. The time must go so slowly for you waiting until October! If it’s not CD, I wonder what it could be. I’m optimistic that they can find a way to help you and that this difficult weaning off of drugs period will be all worth it. You are in my thoughts. Call me when you’re feeling well enough to talk. I know that writing can be hard.

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  3. You are not alone. Perseverance and hope are the answers. You have already shown amazing resilience facing this situation.

    Here is a nice poem by Maya Angelou: STILL I RISE. I hope you like it.

    STILL I RISE

    You may write me down in history
    With your bitter, twisted lies,
    You may trod me in the very dirt
    But still, like dust, I’ll rise.

    Does my sassiness upset you?
    Why are you beset with gloom?
    ‘Cause I walk like I’ve got oil wells
    Pumping in my living room.

    Just like moons and like suns,
    With the certainty of tides,
    Just like hopes springing high,
    Still I’ll rise.

    Did you want to see me broken?
    Bowed head and lowered eyes?
    Shoulders falling down like teardrops,
    Weakened by my soulful cries?

    Does my haughtiness offend you?
    Don’t you take it awful hard
    ‘Cause I laugh like I’ve got gold mines
    Diggin’ in my own backyard.

    You may shoot me with your words,
    You may cut me with your eyes,
    You may kill me with your hatefulness,
    But still, like air, I’ll rise.

    Does my sexiness upset you?
    Does it come as a surprise
    That I dance like I’ve got diamonds
    At the meeting of my thighs?

    Out of the huts of history’s shame
    I rise
    Up from a past that’s rooted in pain
    I rise
    I’m a black ocean, leaping and wide,
    Welling and swelling I bear in the tide.

    Leaving behind nights of terror and fear
    I rise
    Into a daybreak that’s wondrously clear
    I rise
    Bringing the gifts that my ancestors gave,
    I am the dream and the hope of the slave.
    I rise
    I rise
    I rise

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  4. I am so sorry you are having so much pain and no relief., your Mom told me you had been to Mayo and your struggles, wish I was closer to give you support and hugs, I pray for you every day much love, Aunt Janice

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      1. Dear Pr,ahantsDo you really believe that IPO got inspired by your post(s) and requested the GOI to get the Avasthagen Patent invalidated under section 66 and decided on its own to review all its TK related Patents

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