The War in Me

You know that pain you get in your neck when you’ve twisted it or slept on it the wrong way?  When it’s so stiff and the pain is so unbearable that you don’t have the willpower to move at all?  Well, that’s what I’ve been experiencing the past two days.  Yesterday, I thought maybe it was just a fluke and I would be back to my “normal” pain level today.  But when I awoke, there was no such luck.  I knew I would be seeing my doctor this afternoon; all I had to do was make it until 3:00 p.m. when I would be searching for some pain relief by receiving Botox injections.  Seven hours seemed like a long time, but I had a busy day lined up.

A friend picked me up this morning to go to our class on “A Course in Miracles” out in the western suburb of Wayzata.  I made sure I had my neck pillow with me, a sweater in case the retreat center was cold, my ice water, and my ice pack to help soothe the increasing pain on the left side of my body.  By this time, it felt like a hammer was pounding nails into each and every vertebrate, and I couldn’t hold my head up.  We always arrive to class early enough so that I can snag my spot on the couch.  You see.  I know exactly where to sit so that I experience as little pain as possible.  The right end of the couch provides the most support for my head.  Plus, it allows me to see the facilitator and the rest of our group when we are discussing each topic.  I’ve sat in this same spot every time for eight weeks, except the one week I wasn’t there.  And wouldn’t you know it?  Today, one person had gotten there before us, and she was in my spot!  I sat at the other end of the couch, thinking, “This end can’t be that much different.  It’s still at the end.”  But this change in variables did make a difference.  My head was pulling in all directions.  I couldn’t get comfortable for the life of me.  There was no place to stretch my legs to help me support my head better.  Well, I learned my lesson the hard way.  Next time I will listsen to my inner voice, and just ask the person to switch with me.  

Now this may not seem like a big deal to any “normal” person, but for someone with chronic pain, you have to plan out in advance exactly what you need to be relatively comfortable at the venue where you are going.  And what you need does change, based on the location.   The most important piece, though, is to listen to your body, and position yourself in the most possible comfortable way.  Or, like with me today, I guarantee you will be feeling the brunt of it later.

After our class, I had three hours to go until my appointment.  On the one hand, I was dreading the Botox injections.  I fondly refer to my physical rehabilitation doctor’s office as The Torture Chamber.  On the other, hand, I needed something, anything that would make this pain go away.  Initially, I made the appointment so he could fill out the forms that declares I am still unable to work, in addition to getting the form for requesting a handicapped parking placard.  But by the end of my appointment with my physical therapist last week, she ordered me to get the Botox injections on the right side of my neck and back because she hadn’t been able to calm my spasms down for weeks.  Botox, sadly, was our only hope.  

Have you ever experienced a Botox injection?  The idea is that this poison is injected into the areas that are spasming the most, so that it will eventually provide relief for the spasming for a period of time. When the needle goes in, you can hear the static on a machine it’s hooked up to.  The louder and faster the static, the more active the spasming is.  My body was already telling me it was bad, simply based on what I felt.  And at 3:10 p.m., the static machine confirmed my pain level, which had risen to an 8.  

After four years of injections, today was definitely the most painful.  My doctor is awesome, and we joke around a lot, which helps when you’re experiencing intense pain.  Before each injection, he’ll say “Poke” so I know it’s going in.  Flinching, wincing, moaning, groaning, often swearing, loudly faring…Each surge of this deadly weapon is like a bomb exploding in my body, only I don’t have time to find shelter before the next one blasts off.  After each one, he’ll always ask me if I’m doing okay.  “Do you need any water?  Do you need to put your feet up?  How ’bout some money?  I think Lori has some in her pocket.”  Because we are able to laugh together, I am able to withstand the 10-20 pokes I get each time.  Today, there were 14.  

By the time I left his office, by body was screaming inside and I could barely turn my head.  Good thing I only live 10 minutes from my appointment because I knew I was not going to be able to look both ways when driving very easily.  If only there was a road that would lead straight to my house.  No stops. No turns.  How is it possible that in the year 2014 we still don’t have the modes of transportation the Jetsons had?  I miraculously made it home and immediately curled up on the couch with my cold gel pack.  There was no stopping the pain, but I had to at least try.  Agony controlled my body for two hours.  

Now it’s 10:20 p.m.  I am feeling better at this very moment.  But the other thing you need to know about Botox is that it takes one to two weeks for it to work.  Your body resists this poison because it’s not supposed to be there.  It’s like having two samurai warriors battling it out.  Sometimes the Botox wins, providing some temporary relief from the pain.  And sometimes your body wins, which means it didn’t get any relief from the Botox whatsoever.  I prefer the former, especially if I’m undergoing the torture anyway.  This is what it’s like to get a Botox injection.  

I don’t understand why people willingly pay to have Botox inserted into their bodies.  Perhaps, they don’t feel the pain because their muscles aren’t spasming like mine?  I just don’t get it, and to be honest, I don’t want to.  Any time I hear those dreaded words, “Michelle, I think you should see Dr. D. about some Botox”, it’s always too soon.  This last time I was lucky because it had been 8 months since I’d needed it.  I just pray that today’s injections did some good so that I am once again able to manage my own pain.

My Hope:  My immediate hope is that the Botox provides my body with a welll-deserved break.  Not only from the pain but also from the spasming.  This is the only way my physical therapist can actually work her magic on the right side of my body.  

I also hope you, the reader, have learned something about this toxic drug being used on way too many Americans for managing pain.  Up until Jill, my physical therapist, and I decided to do the case study by having her use dry needles on me, the only option I had for treating the pain was Botox.  If the public is educated about how toxic and painful this is for all dystonia patients, remembering the purpose of the drug is solely to manage the pain since it does not cure it, I am hoping there will be a public outcry…finally, someone will stand up and demand that research be conducted to find a cure.  Funding included!   My dream is that one day there will be a cure.  And I am doing everything I can to help make that a reality.

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2 thoughts on “The War in Me

  1. One of the problems with chronic pain for me is that it turns me inward. I am sorry I haven’t been paying attention to your blog. All I have is excuses. That is another aspect of chronic pain is that I always seem to have excuses. I am so weary of excuses. Yet…there it is. Sigh. I will be reading all of your posts and commenting in better ways, but this is all I have right now.

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  2. I hope you didn’t think I was calling you out on this, T. I am just interested in your story, whenever you have a chance to share. I learned so much from you over the summer and loved the collaboration aspect too. I know what you mean about turning inward. I’m hoping that by writing this blog, I’ll be able to release some of my stress. It can’t hurt, unless I put pressure on myself to do it, right? 🙂

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