Saturday, September 8, 2012

Reconciling the Old Me and the New Me

So I have to wait until Tuesday to see the spine specialist to get his interpretation of my spinal MRI from last week, which showed a lot going on that had not shown up in previous x-rays, though I have been in fairly acute pain for a couple of weeks now. Summary:

Impression: 1. At L5-S1 there is a broad-based disc bulge with large superimposed disc extrusion causing severe canal stenosis and severe left neural foraminal stenosis. The disc has a rim of different signal which may represent blood products associated with an acute herniation.
2. At L2-L3, there is a on broad-based disc bulge with a left far foraminal protrusion causing moderate left neural foraminal and far foraminal stenosis.

Since the MRI, I've not been cleared to drive, and working (or blogging for that matter), requires almost more concentration than I can bear to muster. The acute pain that sent me to the ER -- shooting, electrical feeling pain down from my low spine to my left hip and down my leg to my foot, which feels almost completely numb 24/7 now is merely "under control" -- but that requires ibuprofen, aspirin and painkillers to keep from going nuclear again.

I feel pretty useless -- type A person that I normally am -- especially when on Thursday, I was reduced to the point that simply taking a shower left me so sore and exhausted that I required a nap just to recover.

The ritual of getting up, showering, and before getting dressed applying all the topical pain salves and liniments on my back, legs and feet makes me think I've crossed the threshold into senior citizenship early (after all, I don't turn 50 until next July, I haven't even received my AARP invitation yet!).

The Old Me. The New Me.

I remember all too well when I'd manage to make to work by 7AM on a regular basis, stay all kinds of long hours, putting all of my energy in to my job, stay up all night writing 7-9 posts for PHB. Now I'm like a candle burned down to a stub.

If I can get my sorry @ss together and to work by 9 it's a miracle. Once there I have to think about how much "pain points" is it going to cost me to go to the copier down the hall multiple times, how many trips to the bathroom or up the stairs is "worth the pain effort", preserving energy for meetings where I have to lug equipment or my laptop (which now feels like it weighs a ton when of course it's only about 5-6 lbs.) down to a remote meeting room.

Of course that was when I was going to work. After the ER episode I've spent most of the last week and a half out of the office, I now have to cancel a business trip that would have been involved a lot of walking, lugging bags and my computer around, standing around talking to vendors, stuff that is a no brainer if you're able-bodied and not in acute pain. For those "re-adjusting" to the law of diminishing returns when dealing with chronic pain, it's a real morale killer, but a reality one has to accept on a timetable that is often out of your control.

I actually did put in a few hours of work last week (telecommuting), but that was able all I could handle. I certainly couldn't even handle sitting in a chair at my desk most of the day. While I am medicated out of acute pain while in this holding pattern, I refuse to overmedicate to the point of "comfort" because it zones you out. I hate that feeling. I discussed the dysfunctional health care system (and the epidemic abuse of pain meds in society) in dealing with patients with genuine chronic pain, "When the system fails you: living (or is it just existing) with chronic pain." You have to weigh the benefits of less pain vs. less clear-headed.

So in this crap holding pattern I feel useless, sometimes despondent, alone (not for the lack of great support and care -- and great wheelchair service -- by my wife Kate). I just want 1) relief, 2) competent medical care, 3) news about my options -- which will set off another series of events -- researching for second or third opinions and making a decision about surgery. The MRI sounds bad enough to suggest a surgical option might be the best way, but I'm open to what brings the best chance of lasting relief. That's relative, of course.

Today was another futile attempt at normal. I took a dry Swiffer around the house, did some light dusting, and now I'm in pain typing this. Why did I do it? Because I had to do something normal. I was tired of being useless. I'll probably try going to the grocery store and seeing how far I can make it before giving up.

Yes, I'm hard-headed.

Messages of kindness...and uncomfortable cluelessness

I'm thankful for all the well-wisher messages, but for obvious reasons, "get well soon" is not particularly uplifting to me, not because of the sentiment behind it, but because I know that 1) it won't be soon, and 2) with rheumatoid arthritis and fibromylagia on top of what's going on now, you don't "get better", you at best get into another holding pattern of whether or not you find medications you can tolerate that MAY slow the disease and moderate the pain, but they can also make you very sick.

I think it's hard to know what to say to a person facing a future that is not the "normal" that they experience every day (after all, you "get well soon" from a cold or even a broken leg) and take that physical state for granted. I know because I would be in the same position if I were not the one facing what's happening in my life right now. I now more keenly am aware of the fact that despite the Americans With Disabilities Act, most of the accommodations in public arenas leave a lot to be desired, and most Americans see someone in a wheelchair, or limping, or using a walker or cane as "slowing them down." You see the disdain and impatience on people's faces.  Heck, when I had to do voice rest for a week, my eyes were opened about how incapable and impatient most people are at handling someone who cannot speak as their primary form of communication ("People -- I can't speak, but that doesn't mean I can't hear or think...").

Humans are pitiful, discriminating creatures when it comes to accommodating differences, and don't often extend themselves very well without "retraining" to be aware of their biases to react differently. They'd rather just avoid dealing with people who are different (or differently-abled) at all than deal with the extra intellectual effort (or emotional vulnerability) required.

But here is where I can gripe and moan. For now. It still beats being six feet under. I have to keep saying that.


  1. Pam, I've been a reader and FB follower for years, but haven't commented much on PHB. I am where you are to a degree, chronically ill with little or no prospects of getting "back" to where I was.

    The big difference for me is my disability is of my own doing - COPD - but it brings the same feelings of hopelessness and dependence that we shouldn't have to deal with yet at our age.

    My best to you and may we learn to continue to be somewhat productive through it all.

  2. Remember when I did this posting and the encouragement you and others gave me ?

    What applied to me then applies to you now.

    A postscript on the posting for those who read it. In the posting I mention giving myself anti-blood clot shots.

    Well four months after the surgery discussed in the posting I had a heart attack caused by a blood clot.

    But I have survived that too and, although there are still "down days", I continue to march on looking forward to the "up days" which are more in number than the former.