Curves in all the wrong places

I am a spoonie. I know you are probably thinking, “What the heck is a spoonie?” and before we go any further I will assure you I do not have some strange obsession with spoons. A spoonie is someone who has a chronic illness or disability, they measure their daily tasks in spoons. You are allotted a certain amount each day and each task you accomplish takes away a certain amount. Essentially like a battery being drained of energy. This theory was the brain child of Christine Miserandino, and frankly it is totally on point.

I have S curve scoliosis. I know when you hear scoliosis you think, oh my friends sister had that and she is just fine. Well I am very happy for her but mine is a severe case. It affects my every movement. I am in pain every moment of everyday, from a minimal amount to hysterical tear inducing pain. It affects my breathing, my ribs, my ability to walk or be mobile, my hips, my back, my neck, it causes headaches (daily), numbness and tingling in my hands and feet, nerve pain in my legs and arms, knee and joint pain, and severe exhaustion. My PCP has preemptively diagnosed me with fibromyalgia and I am soon going to be tested for dystonia.

My last x-ray in 2016

I am 30 years old. I have been in and out of doctors offices since I was born. I was born with 2 VSD’s, these are holes in my heart. I saw a cardiologist until I was 18 and they were assured I was okay. I started having severe migraines at the age of 7 and had my first MRI then as well. They found my scoliosis at age 10. I was diagnosed bi polar depressive at age 27.

I have tried everything so far short of major spinal surgery for my scoliosis with no relief and it has only gotten worse. I have tried bracing, physical therapy, massage, and seeing a chiropractor. Medications don’t touch my pain, I still take them with hopefulness but they just don’t work. Heating pads, rest, not being active, pain relief creams, etc help to mask the pain for a bit but it is a never ending battle.

I am starting to actively search for a plan for the rest of my life in reference to my spine, my body, my pain. I have a neurology appointment in December and new scans coming up soon. I want help, I am tried of the daily pain I have been fighting for most of my life. So that brings us to the reason for this blog and me sharing all of the above with you. I deal with this everyday and have for almost 20 years, if even one thing I say can help someone or allow someone to realize they are not alone then I will be happy. I plan to share my life on here, the good, the bad, the pain, the doctors, the experience of being a spoonie.

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13 thoughts on “Curves in all the wrong places

  1. I too had issues with my spine curving, had surgery and it wasn’t fun. Even today with the surgery correction my back still is not the best, it’s straight but it definitely still hurts most days. I can understand the pain you probably deal with. I don’t have any answers but I hope you find some!

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  2. I cant imagine the daily pain you suffer. As Doctors progress with new medications and technology, i hope there is something that helps you and others who suffer daily as well.
    Keep us updated!

    Xoxo D

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  3. Hi Heather! I want to thank you for sharing your story. I have followed you for some time now. I work as a neurosurgery nurse, and I can understand your pain. I hope you have seen specialists at Emory. And as for your VSD’s – what’s the scoop on them?
    If I could recommend anything at all – I would suggest you swim. There is zero load on the axial spine, and it is great cardio exercise. Please feel free to reach out. You likely know more about congenital spine issues than I will ever know.

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    1. Thank you Patrick! That means a lot. I will definitely check into my local swim centers and see about open swim times. I do so enjoy it and I think that would be an excellent way to exercise.

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  4. Hi Heather
    I know the daily routine of living with pain and the one thing that most people don’t seem to understand is that it (pain) dictates what and how you do normal every day stuff. It becomes all you think about.
    I get what you are going through.
    A few things that have helped me in this fight are aqua therapy, yoga and meditation.
    I wish you all the best in your journey.
    I will follow in hopes that I might learn a thing or two.
    Best wishes.

    Liked by 1 person

  5. Hello there….
    So I too had scoliosis and it was never tended to so have always had some back discomfort. I have done heavy construction so now I also am dealing with degenerative spinal issues which becomes quite painful if I work, and if I lay around too much. Seems like an active lifestyle, good diet, meds only as needed…
    My issue now is cervical pain, stiffness and headaches. Am having nerve ablation therapy next week on the right side, left side weeks ago. Results have been good thus far…don’t know what the future holds as we all deal with the physical changes associated with aging…I’m 67. Best to you….☮️💕

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