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August 23, 2012

A neck story, ridiculously long

Filed under: Chronic illness, Personal — Tags: , , , , , , — llcall @ 9:25 pm

Monday, August 20

  • 2:00pm Tweaked while getting out of bed; try to keep moving
  • 2:30 Twinge of pain getting worse
  • 3:00 Movement = torturous
  • 3:30 TENS unit
  • 3:50 Rub
  • 3:53 Change positions, every 3.5 minutes
  • 4:20 Ice
  • 5:00 TENS unit
  • 5:30 Can’t move down, up, or to the right
  • 5:35 Warm shower, rub
  • 6:00 Ice
  • 6:30 Rub
  • 7:00 Rub some more
  • 7:03 Keep changing positions
  • 7:30 Fresh squeezed lemonade (unrelated to my neck, but my mom tends to make me my favorite drink when I’m really down and out)
  •  8:00 Repeat the foregoing all evening and half the night

Tuesday, August 21

  • 9:20am Rub, moan, sigh
  • 10:00 Walk around the block, slightly faster than tortoise-pace
  • 10:20 Lay down, moan
  • 10:23 Change positions
  • 10:30 Mope about missing last pool party of the summer
  • 11:00 Moan, rub
  • 11:30 Rub, moan
  • 12:00pm Ice
  • 12:30 Warm shower, rub
  • 1:00 Lay down
  • 1:03 Change positions
  • 1:10 And again
  • 2:00 Make appointment for therapeutic massage and medical evaluation
  • 3:00 Rub
  • 3:30 TENS unit
  • 4:00 Protect neck from Addison’s exuberance
  • 4:10 Put “Mulan” on to avoid excessive interaction and movement
  • 6:00 Rub, moan
  • 6:30 Breathe easier as pain begins to subside
  • 10:30 Fall asleep at a reasonable hour

Wednesday, August 22

  • 1:30am Jerk up to see what Neal is yelling about
  • 1:31 Realize that Neal is sleep-talking (this is not unusual)
  • 1:32 Realize that every nerve in my neck is screaming in pain from hasty movement
  • 2:00 Moan loudly enough to wake up Neal, as punishment
  • 2:10 Realize that moaning is fruitless, sigh
  • 9:20 Wake up  in extreme pain
  • 10:00 Walk, rub
  • 10:30 Put on neck brace to immobilize
  • 11:00 Wander aimlessly, thinking about pain
  • 11:30 Rub with numbing gel
  • 12:00pm Warm shower, rub
  • 12:30 Count the minutes until massage
  • 1:00 Mope about missing second last pool party of the summer
  • 2:30 Medical tests of muscle inflammation and symmetry
  • 3:00 Deep, deep tissue massage, FANTASTIC!
  • 4:00 Cry (inwardly) because massage is over
  • 4:10 Results of testing: left side of C1-C7 = jacked up
  • 4:30 Praise massage therapist, enjoy renewed range of motion
  • 5:00 Mope about renewed pain, expense of treatment
  • 5:10 Rub
  • 5:30 Lay down
  • 5:33 Change positions
  • 6:00 Persuaded to dig into my secret stash and take narcotic pain reliever (prescription, of course)
  • 6:30 “I feel funny . . . Why is this happening to me?”
  • 6:33 Remember I just took an opiate
  • 7:00 Feel awesome, move my neck up, down, to the right just to prove I can
  • 7:05 Cook eggs, toast bread in the oven
  • 7:10 Call Neal down to show him I used the oven, proclaim myself “Superwoman”
  • 8:00 Sit up without pain
  • 10:00 Narcotics wearing off
  • 10:30 Rub
  • 11:00 Lay down
  • 11:03 Change positions
  • 11:30 And again
  • 12:00am Rub
  • 12:05 Take sleeping pills
  • 12:30 Get up, take more opiates
  • 1:00 Blog about taking opiates, remind myself to stop taking opiates
  • 1:30 Go back to bed
  • 2:00 Minor hallucinations, or else Neal was repeatedly whispering my name just to mess with me

Thursday, 23 August

  • 9:20am Pretend I’m still asleep to avoid breakfast duty
  • 9:30 Rub
  • 10:00 Read to Addison
  • 10:20 Lay down, moan
  • 10:23 Change positions
  • 10:30 Think about taking opiates again (disregard 1:00am note to self)
  • 11:00 Rub
  • 11:30 Ice

Laying it all out like that, I realize I haven’t changed a diaper in four days. Definitely a record.

I also realize how far I’ve come since that fateful day in April 2006 when my neck first got irreparably jacked up.

This is where said neck-jacking-up occurred, on a highway in Tennessee. Despite this being arguably the most pathetic picture of me ever taken (I’m collecting my belongings in a boot for crying out loud! — a very cute boot, I should add, given to me by Rach, of course), I love it. It just cracks me up to think about. Did someone (Neal or his dad) just snap a photo? Or did I kneel down and pose, saying, Hey, someone should definitely take a picture of me since I just got out of the hospital, haven’t showered in a couple of days, have vomited multiple times in the last several hours — actually there’s probably some in my hair, better get a close-up too! Sounds implausible, which is probably why it’s pretty close to what actually happened.

These last few days have made me remember those days when my whole life revolved around my neck. Braces and medicine and physical therapy and more medicine and x-rays and MRIs and no sleep and rubbing, always rubbing. And later a surgery or two, or seven.

In the spring of 2008, I had what was supposed to be my last surgical procedure for a long time. They were going to go in and burn some nerve branches, and they said at my young age there was a good possibility that this would be a permanent fix. But in just six months I was both pregnant and in pain. There wasn’t much to be done because most of the treatment I had received was not compatible with pregnancy; my doctor told me I had permanent arthritis in my cervical spine and I needed to start thinking in terms of liveable pain. (Now I know liveable pain, but still, with each new ailment, it is hard to accept that you are now at the liveable-pain stage: there is no cure waiting in the wings to be discovered.) He said I should come back when it was either no longer liveable or I was no longer pregnant.

A couple of months after that pregnancy didn’t take, I met with the other (more aggressive) doctor in the practice and he had his own treatment plan. So in February 2009, I had what I now know was a fantastically successful surgery. After the initial period of recovery, I had such good pain relief that I started to wonder if my neck might have really healed (mostly), rather than just be temporarily numb.

Then just a few months ago, in May, I was finally feeling better after nearly three months of overwhelming fatigue when I started to notice some tell-tale signs. Rubbing. Tossing and turning. Trying to get the pillow in just the right position. Headaches. More rubbing. I had thought if the damaged nerves were regenerating it would be a gradual process, but in under two weeks I hit “the point.” I was pushing Addison in the stroller on my way into Home Depot and thought, Wow, my neck doesn’t even hurt right now. That’s always a tipping point — when I start to notice the times my neck doesn’t hurt rather than when it does. I could tell that without intervention I would be in unliveable pain territory pretty quickly. I read Relief at Last to overview the latest research since I had last been on the hunt for pain relief. I started walking five or six days a week. I got back in touch with my Utah doctor to discuss the feasibility of having a repeat procedure — he was ready to go this summer on my trip up there, but I opted to try gentler (and cheaper) measures first with the possibility of surgery next winter or spring. He kind of thinks me and my “gentler measures” are lame, but since he gave me 3+ years of a better quality of life than I could have expected, I can’t fault him too much.

And then Monday happened, a minor “tweak,” and I’ve been darn near unliveable pain ever since. I barely get up, even though it is at least as painful to lay down. I wince at Addison’s every exuberant hug, even though she’s trying to help: “I kiss you neck, then feel BETTER!” I would kick myself for not just having had the surgery this summer except that my current pain is on the OPPOSITE SIDE of my usual pain. How maddening is that, right?! The doctor I saw yesterday said the muscles on my left side are seriously inflamed and asymmetrical (pulling too far left — as in, muscle pull should be no more than 50% one way or the other, and my C5 left side reading was at 758%. [Even though I don’t totally understand all the tests, it is good to be able to tell Neal that I am 758% less capable of changing diapers than I was four days ago]). The poor test results were clear enough that the doctor wanted to get some immediate x-rays to see if/how my spine was being affected. But of course, while he was talking and showing me graphs and diagrams, all I could see was dollar signs: $$$$.

What is the moral of this ridiculously long neck story? My neck may be as jacked-up as ever despite tens of thousands of dollars worth of tests and treatments? Opiates would be my best friends if not for that pesky addiction thing? I should get an extension on my revise and resubmit since non-neck-related thoughts have no place in my brain right now? I need another pair of cute (and serviceable) boots?

No, the moral is this: One day (hopefully soon) I will look back on this post and be grateful that my whole life doesn’t always revolve around my neck.

(At least that better be the moral.)

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13 Comments »

  1. Lindsay, that’s HORRIBLE! I didn’t know about your neck trouble. I’m sorry to hear about it and I’m sorry that it flared up. I hope it gets goes away, or at least gets manageable again soon.

    Comment by Genny — August 23, 2012 @ 9:37 pm

    • Thanks Genny! I appreciate the well wishes. I should say that my spirits were lifted this afternoon by a double scoop of Baskin Robbins’ chocolate fudge — works every time!

      Comment by llcall — August 24, 2012 @ 4:04 am

      • I bet you’ll feel even better when we sit down for some fun neck-pain problem-solving. Enough touchy-feely wishy-washy active-listening crap. Let’s problem-solve this sucker!

        We can get more Baskin Robbins today if you want, too.

        Comment by neal — August 24, 2012 @ 2:45 pm

  2. Dang, I can’t believe it’s that bad again 😦 I am so sorry to hear that. I can’t imagine how frustrating it would be to run up against so many obstacles. There is vicodin at my house! Jk. Well there *is* some strong painkiller that I never took after giving birth that you are more than welcome to, but then the whole addiction thing pops up. The day they invent non addictive painkillers is going to be a good day for a lot of people

    Comment by kei02003 — August 23, 2012 @ 9:56 pm

  3. Also I appreciated the (unintentional?) visual poetry of the post. It looked like a craggy neck attached to a body

    Comment by kei02003 — August 23, 2012 @ 9:56 pm

    • Unintentional? You underestimate my visual poetry prowess.

      (No, not really. It was unintentional.)

      Comment by llcall — August 23, 2012 @ 10:10 pm

  4. I’m so sorry it’s so bad. I’ve had a little bit of neck pain before, I can’t imagine what you’re going through being in so much pain. I have some really cute boots, I’m not willing to part with them, but maybe if I wear them they’ll make you feel better 😉 Let me know if there is anything I can do to help with the reunion

    Comment by enelo — August 23, 2012 @ 10:57 pm

    • By all means, wear your boots (but maybe when it’s cooler — it’s not really boot weather around here). I will let you know about the reunion, but I think we’re doing fine in that way. Keepin’ it simple, you know!

      Comment by llcall — August 24, 2012 @ 4:05 am

  5. I was feeling such warm thoughts for you throughout the post that I only barely shuddered at realizing I had just seen photographic evidence of vomit-hair. 🙂 Best wishes, Lindsay! I hope the lemonade and chocolate fudge ice cream continue to find you.

    Comment by Elizabeth — August 24, 2012 @ 6:44 am

  6. I’m so sorry your neck is giving you trouble! Neck pain is no fun. Actually, any pain is no fun. I am sorry it’s been rough. Let’s talk sometime! It’s been crazy this week, both kids trying to hurt themselves; Beth has amassed several goose eggs and Russell cut his eye lid (that one was more traumatizing for me than him, I think). Good grief. It should slow down, I hope, so let’s plan something for either tomorrow, or next week. Love you lots, and hope you figured out at least something you can do to help!

    Comment by Sabrina — August 30, 2012 @ 4:57 pm

    • So sorry to hear about the kids hurting themselves! Let’s shoot for a chat next week!

      Comment by llcall — September 2, 2012 @ 5:22 am

  7. 1—so sorry!
    2—this is why I should never take a break from reading blogs! we could have saved so much time on our phone call if I had been reading these posts
    3—love your timeline! awesome! favorite line: cry: (inwardly) because massage is over. so know that feeling.

    Comment by v. blanchard — September 2, 2012 @ 12:48 am

    • About #2, when we were talking about this topic on the phone, I felt like I was being so repetitive and redundant, like maybe I was sounding really whiny and pathetic…but I wasn’t thinking about the fact that you hadn’t read this post. So it makes me feel better to know that I wasn’t just complaining to you redundantly. And although I think you should do a blog break whenever you need to, I do miss you around here!

      Comment by llcall — September 2, 2012 @ 5:24 am


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