Circling Fully

Circling Fully

 Barefoot Baroness

Finding out that you are sitting through life on a brick wall that you’re going to tumble off anytime is dis-heartening in a lot of ways. Some people may even find it earth shattering, especially if they happened to be an athlete. I’m blessed in that I am not an athlete and the diagnosis of the condition of the mechanics of my body being in such poor shape has actually been validating. For the first time in two years someone is not just listening to me but is being proactive.

It’s not that my other medical providers have thought I am malingering. In fact my pain specialist and I have a great friendship even. One of her colleagues who I have seen for second opinions told me a few weeks ago that just looking at the x-rays of my shoulder, neck  and mid back he can see why I am in pain. As he added “You’re a mess!”

Meeting with the Occupational Therapist was exciting as it turned out. Despite some news that my body has been developing its own way of handling things I have discovered that there is a lot I can do to maybe make things better. It sounds like tremendous work, some of it sounds utterly ridiculous to the everyday situations. But because I am at my wit’s end and the options I am looking at again to make things better involve more steroids, laser burning of the nerves involved. Or surgery. None of these are attractive options to me.

Having surgery on my neck in 2000 to have a titanium plate to be part of the fusion between my blown out discs.It was an implant, I was freaked!

After much research, a sensitive surgeon who gave me him home number and said call him whenever with whatever concerns I had, and pain and dis-function I decided I had no choice.

It was a major surgery; I was in surgery for close to 12 hours, recovery for 18 and in the hospital for seven days. It was not the picnic it sounds like being in a hospital for a week to those who have never been and think it is a vacation. I had people  tell me how wonderful the weeks vacation must have been, a whole week in bed being waited on.

Really? Not so much!

The surgery was declared a success by my surgeon, my internist, and even my physical therapist then. My recovery was about 14 weeks and then a year in physical therapy after. Three times a week. I did really well, was doing awesome for close to 10 years!! My fusion still looks great, the hardware is solid and in place. My problems are below and above it in the spine and broadcast throughout the brachial plexus. I have serious spinal stenosis and spondylosis. Along with all these things I have I also have good old osteoarthritis.

According to my Occupational Therapist I have been working with; this body has been broken for so long that what I’m doing just feels normal to me.  For instance I have a real issue with keeping my shoulder’s up around my ears. I am in permanent shrug. It was something I never even realized I was doing until it was pointed out to me and it’s something that despite 12 years of being mindful of it I am still not good at keeping my upper body as relaxed and limber as it would better serve me. I remember the first time I was told this. I looked at the therapist and said, “So. I see it but so what. It’s what I do” Right?

Wrong! What I am doing to myself by not getting a better handle on this even over the last 12 years is cause further damage. Maybe when I was in my 20’s this would have not hit so hard. I hope it would have some effect on me but I kind of doubt it. I have been trying for 12 years to get a grip on relaxing my shoulders and unless I am constantly mindful of it I am constantly blowing it. Driving (when I drive) with my shoulders wrapped up around my neck and tugging on my ears is how I drive. To do anything else takes such concentration that I lose focus off the road. Scary! Trying to tell myself to relax those shoulder muscles, to just breathe into my core and sink into it is not something that comes natural to me at all. I’m not sure it ever has. I even wonder if all the years I was in gymnastics and if I had this peculiar body posturing why my coach never said a word.

There have been doctors, nurses, therapists throughout the years that hinted at something but maybe they felt my aversion to doing anything that involved life changes. I thought I was so smart, I thought the life I was leading was healthy and wise. I’m learning now at age 57 that a huge part of what I believed I had figured out, I have little accomplished.

The therapist will be teaching me the difference in nerve and muscle pain. This is something that never even occurred to me that it would serve me to know the difference. I’m not sure I even realized there is a difference. But there is, and learning to know the difference is one of the first things I will be working on.

The technique in this new program that I am engaging in is called Desensitization. It’s just like it sounds. My body’s nerves are hyper sensitive to any stimulus that it’s exposed to. And one of the ways I’ll learn the difference between muscle and nerve pain will also teach my body that it needs not react and be so hyper vigilant when exposed to pain stimulus. Because the wiring of my nervous system is all louse up any time my body is exposed to anything that is stimulus it can trigger and be perceived erroneously as exaggerated pain. Pain that if someone healthy felt the same thing they may not feel it at all, or only mildly.

This treatment or program is going to help my brain relearn what is normal and what is not.

If it sounds confusing, It is. But one of the things I was told that I found incredibly comforting, ironically, is that I do not need to understand why or how this is going to work to begin. That’s not something normally I would accept. I am an analytical person by nature and it is not like me to just say “Oh Okay, just do it. You don’t need to have it figured out for it to work”

But this time for some strange reason I don’t feel the need to know. It’s enough for me that this person who has been studying and working with the body for almost 40 years knows what she is talking about. And she has testimonies from patients that have graduated, if you will, from this program that they are doing, and doing really well.  Clients like me who for half a century have been carrying their body a certain way, unknowingly all that time that they were causing damage and bad habits. Who knew?

Not me.

So my feelings are more hopeful than they have been for some time. It’s going to involve lots of life changes but I’m so ready to start.

My first sets of homework instructions seem simple enough. Get a shoe brush, a soft one meant for buffing. I am going to be brushing my body with it. Really! It’s all part of the desensitizing that I am beginning to teach my brain and body. Also I need to ice several times a day, get a vibrator that  I will not even lie on my body, instead It will lie just next to my neck on a pillow.

Pillows are another life change. This one will be easy though as I already am a pillow addict because ironically I am doing what my body naturally wants me to do. Support my arms and shoulders with pillows under them which in return will also support my neck .This will help the whole upper body to relax. I use pillows but carrying them with me outside the house or in the car will be different. Such as this very instance; I am sitting in a medical clinic’s lobby waiting for D, my husband who is having a procedure done. I knew if I was going to type to grab a table and chair. But did I remember pillows to use here? No….

Another thing I am going to need to purchase are about 10 of those foam pads that are for knees in gardening. They are meant to soften the hard ground that you’d be kneeling on while gardening. I’ll not be using them in my garden or for my knees.  I’m told that I also need to sit where my feet can touch the ground. I am short and short-legged. So adding some height under my feet by using these foam pads makes so much sense. I could tell yesterday when I tried them at the OT office just how much more secure I felt while sitting. I never realized before that when my feet don’t touch the ground my body is left to dangle. No support. I was shocked by how much security I felt by just adding the 12 to 14 inches more for me with foam knee pads to rest my feet on.

So my shopping list for tools looks like this:

•     10 to 12 Foam Garden Pads

o    A Soft Shoe Brush for Buffing Shoes.

o    A Vibrator

o    A Couple New Pillows that I can carry with me

I’m really excited to get this going. I am so tired of this deep radiating pain that feels like it goes into the very nerve centers of my spine. The massages and cervical traction three times a week are not doing a thing. Don’t get me wrong, I adore massages. I want massages. But I need the therapy I’m paying for to be something that is resolving my issues, not just putting a band aide on them for a couple of hours.

The most hopeful I’ve felt in sometime and when I meet with the neurologist next week I am talking with him about that I am waiting to do anything more invasive. I’m willing to take the risk of this therapy taking a bit longer than a more invasive type of treatment would. But there is not a guarantee that having a more invasive procedure is going to help. I also do not want to confuse therapies. I want to try one at a time. This way knowing what is working, what is helping, what is doing the trick, this will be accurate information, not muddled because we’ve thrown two or three treatments at one time at my body.

That’s it for now. I’ll try to keep this up.  Documenting this is so important. Giving my doctors my blog wed site should prove very interesting.

Don’t you think?

tjhelser 2012

9 thoughts on “Circling Fully

  1. I can only say i wish you all the luck going. Your documentation was well written and meaningful. It is quite surprising these days with medical issues, I found their favourite word is ‘Inconclusive’ covers rather a lot. 😉

    • Thanks so much Gerry. For reading my looooong post and for taking the time after all that to comment so thoughtfully.
      Your words of encourgement mean the world to me, I wish I could could express how much. You are so right about what the Doc’s favorite answer for everything they don’t have an answer for is. I’d much rather have them tell me they just don’t know. A little bit of honesty and humbleness goes a long way with this Baroness.

  2. I like the non-invasive techniques. I know our stories are way way different, but I’m so for the natural way of healing and learning better healthier ways of doing things that will fix our bodies. I sure wish we lived closer I would run some energy (energy medicine) and that would help you out so much.

    There is a huge difference between nerve and muscle pain. I’ve learned that muscle pain aspirin and pain relievers helps, if only a little depending on how intense the pain is. Nerve muscle, nothing pain meds don’t work. Relaxing and resting seems to help the best.

    I’m pulling for you my friend!!

    • You and although from different bases have much in common regarding our health. I so wish we lived closer too. For a variety of reason but least not being I’d be happy for some eneergy medicine. Although I’ve no idea exactly what that means I trust you.

      Thanks so much Cee, for being there for me, for supporting now both blogs. You are a keeper, Chris is very blessed to have you. As you are to have her.

      Thanks again so much.

  3. Oh Toni, you have my empathy. There is much in this post to which I relate; the “permanent shrug” especially.

    As someone who has had shoulder surgery, and disc replacement with fusion, you have my heartfelt best for a solution.

    Blessings to you and D – Maxi

    • Maxi thank you, This means a lot to me that I have your support here at this blog too. Maybe even especially. I’m doing everything I can to avoid another surgery. I know I’m a bit of babay but the cervical fusion was enough to make me want to run. But on the other hand the pain left me lifeless.

      I want to say I don’t know how you do it but realize it’s not a choice. You just have to come to terms with it.

      Have an awesome day my dear friend.

  4. It’s a great idea that you gave the Drs. your url, Toni. There is much that I can relate to in this post, especially the “permanent shrug.”

    As someone who has had shoulder surgery, and titanium disc replacement w/fusion; you have my empathy.

    Keep us posted on how things go, my friend. Blessings to you and D – Maxi

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