Monday, September 22, 2008

cowboy wisdom

My husband also deals with a lot of pain. It seems so odd to me that we have ended up with a lot of the same symptoms, the same weaknesses. There are pains that he has that I do not (his toe where the surgery he had in May seems to have been unsuccessful) and vice versa (my skull base where I broke my C1 and my skull broke loose from my spine), but it's amazing none the less. He is 11 years older than I am. It is just odd that we ended up somewhat close to the same debilitation.

I mentioned this to my cowboy husband yesterday over lunch. We've been married 35 years this year and we worked most of those years, up until the last year and a half, together on western ranches.

"Isn't it strange that we both have a lot of the same pain and debilitation, and you are 11 years older than I am?" I asked.

He answered, "Same lifestyle."

Seemed profound to me at the time.

The Pain Scale

Everyone I know who deals with pain and doctors hates the "pain scale."

You are asked "How is your pain on a scale of 1 to 10 with 10 being the worst pain you have ever felt?"

First of all, this makes the scale completely subjective. What if the worst pain someone has felt is a hangnail, and another person's is a Csection with no anesthesia?

I was asked this question 3 times last week. First, by an orthopedic surgeon. Next, by a neuropsychologist and lastly, but a neurologist. All were part of a team of "agreed upon medical examiners" for my workers comp insurance and also for my attorney.

[I want to mention here, without segue, that I have experienced such horrific pain. The worst, I suppose, was when I broke my neck. I had natural childbirth without any anesthetics, and my son was born "face up" and it was a difficult birth. I've fallen off of a lot of horses (I'm not accident prone, it's just that my livelihood of training unbroke horses for 35 years just sort of lends itself to an "e-harmony" relationship between one's face and the hard, rocky surface of the ground).

I suffered a dislocated and fractured ankle up in the wilderness while moving cows up into the high country. I just went through a very painful surgery with my tethered cord operation. That was almost 11 months ago and the pain is worsening.

I've had some wicked dental issues with one time being, I had an upper molar and a lower molar abscess the same weekend, our dentist in our little town was away for the weekend and I had no pain meds. I wished for death, as a sweet release, until Monday when the dentist immediately took me in and gave me a big ol' needle and I thought maybe life was worth living again.

One of the worst pains I've ever experienced was food poisoning last year. Also, stupid as it sounds, a particularly bad bout with constipation a few months ago made me longing for fusion surgery and a halo, things I've dreaded.

I woke up from anesthesia sooner than I should have when I had "invasive cervical traction" done last November. I remember feeling the pain, the kind of pain where "pain" is just not sufficient a word, from where they were tightening the screws of the halo into my head and now that I'm writing about it, perhaps that was the worst amount of pain I've known. Later on, I likened how I felt for those moments to what it surely must feel like in Saddaam's torture camps, pure pain, the kind that allows for no words, only utterances.

So, I do know what #10 on a pain scale feels like. And this morning, once more I got up in agony. At 3:45 am, I finally succumbed and arose from bed and hobbled with hurting feet to the kitchen and to decide if I should risk taking a Perocet or not (I did risk).

So, Mr. Doctor, or Dr. Doctor? Ask me to answer the rate of my pain 1 to 10 with a 10 being the worst pain I've ever felt. What do I say? when I woke up a half hour ago, I sat at the computer screen to divert myself, monitor screened darkened to almost black, holding my glasses up with my left fingers so that I can look through my bifocals at the right angle in order to focus (I do this all the time since cranking my chin up to focus thru the bottom part of the bifocals is something a bit insulting to someone with a broken the mornings when I first look at a computer, my eyes are so painful! I'm sure it's because the retinas are not closing very well and I end up each night with eyes that feel like I've just had those drops from the opthamologist to widen the retinas (you know the kind and the pain you feel from any sort of light).

So, I'm sitting here in a lot of pain but thinking, hey, compared to when I broke my neck; when they screwed a halo into my skull and I was awake; when my teeth abscessed, the pain today is more like a "4." But, how misleading is that.

Everyone, most likely, reading here knows what I mean. Pain Scales suck and are useless. And here they are, an incredibly caveman-type (sorry Geico guys) of technology, being used by neurologists, neurosurgeons, brain surgeons, neuropsychologists.

What do I answer? Does it make a difference? I've chosen to just answer 9, by eliminating the worst pain I've ever felt from the equation, and the least pain I've ever felt, like they do in scoring ice skaters. Thus, I envision a judge from the old days, pre-computers, holding up a white sign with a rounded number sketched in with black, heavy markers: 9.5! The crowd goes wild, I jump up and down in the "kiss and cry" booth, hug my coach, knowing if I practice really hard next time, I might get the elusive "10!"

Right now, I'm on morphine 3x a day with Percocet to be taken for breakthrough pain, which means I'm taking it every 4 hours.

Then, someone calls me up and says, "How are you feeling today?"

I can't blame them, I call people and ask the same thing. Are they like me and say "fine" out of weariness and out of "not really wanting to talk about it?" Imagining the white placards with bold numbers handed out by a neuro-judge? Does the friend really want to know? Won't I just sort of ruin their day?

Perhaps I'm placing too much significance on my score.

Saturday, September 6, 2008

Preaching to a choir of one

I look back not too long ago and I posted something about "No bending, stooping, leaning, okay?"

With nice cool weather and me avoiding the above activities, I experienced a pretty-good, last few days. In fact, there were moments when I felt normal.

There are some reading here who know what I mean. Like a teasing phenomena that visits about once or twice a year, moments hit me when I am aware, "Hey, I feel normal!"

These are exciting, smile-provoking moments because everything is clicking right along in tune with everything else inside my body. Nerves are sending smooth signals without interruption and out of nowhere, I get this sense that tells me that I do, indeed, know and remember what normal feels like.

The fact of writing this tells me that I am still in denial and have not accepted my new normal. You see! I did get something out of the two years of therapy!

Anyway, when I experience those sparse and rare seconds, I also know they will not last. But I revel in them anyway because to me, they prove I am not normal, but I still know what that feels like.

An online friend wrote this to me the other day: "I felt so good yesterday. I woke up without any pain anywhere. I even went for a 20 min walk. Then during the middle of the night my head pain came flooding in. I felt better than I've felt in my 20's yesterday. It amazes me how things can change so fast."

This is exactly what happens when these "so good" moments come around. We overdo. We don't think we overdo. We vacuum the living room or take a harmless 20 minute walk, but the feelings of normal, and the actual life of normalcy are two very different hamsters. One can get on the wheel and spin away obliviously releasing happy endorphins.

The other one lies in the corner in the shavings and gets fat.

Because I had avoided physical activity lately, I felt much better for about two days. I still kept up on my pain meds, still had splitting occipital pain from looking down, still felt weak to the bones, still wore my Lidoderm patch at night, but somewhere in the midst of all that, there was a lessening of how bad it "can" be.

Yesterday, my brain, still addicted to the endorphins I'd run on for 50 years, directed me to do something I shouldn't have. I did some kneeling/bending/stooping, getting up and down type of work for about 45 minutes. The project ended up looking sucky and I tore it all up and put it in the garbage can, so that reward of accomplishing something and creating something pretty didn't happen and, therefore, the resulting pain and suffering were for naught.

Oh yeah, last night was a bummer. Up all night taking pain meds, patches, lying in bed with waist and hips and legs hurting was the reward I got. A lesson learned? Somehow, I doubt it. Judging from my track record, this is a pattern I will keep on repeating. 50 years of addiction will not go away so easily. Four and a half years of trying to kick the habit and I'm still sneaking drags from the endorphin joint.

Maybe I need a 12-step program.

Wednesday, September 3, 2008

Best Laid Plans

My plan to try out my Johnston CTO while watching TV last night did not work out. I tried the CTO, but it is unbearable sitting down. That position shoves the chin bars really UP and that's not good, trying to force my head back!

I tried putting pillows in the recliner but nothing made sitting in that CTO comfy. At least not in a recliner and that's all we have in our living room. So, I took it off and tried the Aspen Vista collar.

Ripped that off pretty quick because shooting pains started in my occipital area.

So, I tried sitting up more straight and that worked until later on, when I started that painful drifting off to sleep again. Went to bed then, and went right to sleep, no problems.

I have found a good thing to really help with my leg problems! I put on a Lidoderm 5% patch on the lumbar area! It helps a lot in the daytime, and it helps a lot in the evening! I'm very pleased. They can only be put on for 12 hour on and 12 off, so I'm choosing to sleep with one on. When I get up at night, my legs are not nearly as painful. They do still hurt, but not as bad.

OR, it could be that I've had less pain because I'm really doing very little. I'm not trying to go outside and garden, and I'm not doing any projects and not much housework.

Surprise Gift

A surprise gift came in the mail yesterday. And I cried.

This is a photo of the small wall-plaque that an online friend sent to me. I love that the woman's face is not detailed, her slight and gentle hand curled up on his jaw, her head pressed to him.
With their faces like this, it feels spiritual to me.

My friend included a lovely card and wrote inside that I would ride again, in that place where we will all be healthy again one day.

Did I mention I cried? It all hit me in a very deep, emotional place. I didn't bawl, I don't do that! Too painful on the back of my head. But a few tears trickled down my cheeks and I burned in my brain a little bit for a while. It was a good thing, though. And such a lovely gift and thought! I just had to share it here!

Tuesday, September 2, 2008

Journal of progression

I use this blog as a journal of sorts for me to reference when I need to know how I was feeling a year ago, what a brainstem compression issue felt like, what symptoms to tell my doctor when I go for a consult or surgery, to compare how I felt before and after surgery. This blog has been a big help to me that way.

So, please bear with me today as I relate how I am feeling these days.

"Bring on the fusion! Bring on the halo!"

What I once feared and shunned, now I wish for.

And Dr. B's words ring in my ears when I remember him saying, "You WILL get to where you will take the risk and wish for surgery." I tried to prove him wrong for several months. How did he get so smart?

Although I had a swallow study that said everything is normal, it doesn't mean that that symptom has gone away. I tried to think like that, but such is not the case. My swallowing issues are back in full force and I'm back to having food in my throat for a long time after the last swallow. I imagine that I was just having a good day when I had the study, and I hear that happens a lot.

In fact, one friend who has had the fusion told me that she and others she knows who have had the fusion all had normal swallow studies, but post fusion, the issues they experienced with swallowing all went away. Since the Tethered Cord (or, hey, maybe it was the Invasive Cervical Traction?) surgery, my TMJ is gone, so it is reasonable to hope that the fusion would help swallowing problems too.

One thing that concerns me is my breathing problems. Especially when I lie down, I breathe very shallow and stop breathing if I don't think to keep it going. This is probably the biggest concern I have. And I realise now this could be related to the weakness I feel, and how badly I feel when I wake up each morning. If I've been oxygen deprived all night, then surely I'd wake up weak and feeling like the proverbial truck had run over me and backed up several times.

I've been very, very weak and having a lot more pain in the back of my head and below the waist. My arms ache all the time and my hands are often painful, burning.

My eyes hurt much of the time, something I realise now is attached to the occipital (lower back of skull) pain I experience so much.

Another pretty debilitating symptom is the fact that I fall into very painful sleeps when I am sleeping and sitting up.

I do not believe this is drug (pain med) related. Oh the fact that I don't sleep well at night contributes to early sleepiness in the evening...and perhaps the drowsy effects of Percocet or Norco adds to the mix.

BUT, if I lie down, my sleep is normal. However, if I am sitting up yet reclined in a chair and fall asleep, that sleep is painful and that pain wakes me up and it's ugly. I believe it's compression related. I go immediately into deep, REM sleep with dreams immediately present, and I feel burning in my brain and burning in my legs and feet and arms and hands. I try to fight it because I don't want to go to bed that early, but when I succumb and do go to bed, those painful symptoms are simply not present whatsoever. Supine position means less compression of nerves.

This happens every night now. It does not happen any more in the truck because I wear the Johnson CTO in the truck all the time now. I might get sleepy, but when I do, that sleep is sweet. As long as I have the vest on. (I am just experiencing the value of using this blog/journal! I will try sitting tonight with the CTO on in the chair while watching TV! A time when I would relish NOT wearing it, it will at least be interesting to see if I do not get pulled into that "long, dark tunnel" which I described a while back. I'd also like to know if I just don't even feel sleepy while sitting in the CTO. The hard part is the position of the TV and the challenge of my bifocals combined with the level that the CTO holds my chin! I'll report later to let you know how this worked.)

Bottom line, I'm hungry now for the surgery. I am wondering if people who are in a halo after a long time of experiencing these symptoms find a lot of relief. Most people are placed into a halo immediately following a trauma and therefore would not have the same sensation of relief.

Yesterday, I was in a grocery store and passed a young man (I was wearing my Johnson CTO vest) and as I passed him, he yelled out my name. I turned and he realised that my name, and the name of his wife whom he was actually calling, were the same. Then he asked me if I'd broken my neck. I said yes.

He told his story of when he was 17, playing football, he broke his C6. He was placed into halo traction for 3 days, then a vest like I was wearing for 4 months, and then a hard rigid collar for months. He said his doctor was a young man who had just graduated from Tufts, and that now, he is the doctor for the Olympic team.

I couldn't help but compare HIS treatment to my own, and my own injuries were so much more life-threatening. One of the professional bullriders broke his C6 this year and he is back riding bulls a few months later.

While this man had traction, CTO, rigid collar, I had a short, small, flexible collar with only velcro tabs in the back (no support at all in the back). And I had (as you all know- sorry) the 4 place C1 frx, atlanto occipital dislocation and rupture of all my ligaments. Sigh...old story...sorry!

Any way, bottom line is, I am looking forward to the surgery. I have journeyed to this point and it has been a travelogue of emotions and doubt. Thinking I could suck it up and not have surgery, just get better on my own and live with what I have. Not any more.

Now, there is also the concern that Dr. B will never feel my bones are good enough for the surgery. Or that he could try the surgery, put the test screws into me and not like the result and so close me up without a fusion. And I would have no hope for something better in the future. But that will be a long, rickety suspension bridge to cross when I get to it!