Learning to make tradeoffs

People suffering with chronic pain, in whatever shape or form it comes, learn to make choices, tradeoffs. Each comes with its own special brand of guilt and that “kicking myself” feeling, among others, worst of all regret, but sometimes relief. Here are a few of some classic tradeoff decisions:

1) Do I enjoy myself now at the expense of doing something for a loved one later?
2) Do I do something for a loved one now at the expense of pain later?
3) Is the pain to reward ratio worthwhile?
4) How far in advance does the ripple effect go when I can or can’t do something/when I do or don’t do something?
5) How long will I be paying for this? And will it be worth it, still?

I plan my days under the rubric of these questions. If I have 5 tasks to complete, I know I can usually only tackle 1 or 2 a day and still be able to walk at the end of the day, so I plan accordingly. For a person with a schedule that looks like not much is going on, I assure you, if I have 5 things to do, my week is booked!
It reminds me of some Spoon lyrics:

“….And that's the way we get by
Way we get by
And that’s the way we get by
Way we get by…”

PS

Postscript to yesterday’s posting: I woke up this morning feeling like I got hit my a truck (not that I really want to every really get hit by a truck and know how it feels).

But last night I went to sleep after laughing about everything, and I really hope you laugh, too. When I told Ed, he laughed really hard, hugged me, and kept laughing. I laughed. So if that was your first response, cool.

Pride Goeth After A Big Fall

I fell again today. It was so embarrassing. I was walking back into my class tonight, holding my bag, phone, and chai latte, and I wiped out. I landed on my left knee, did a total roll over on my left side, let out a giant fart, and got up to my knees when a nice guy in scrubs had managed to save my over-priced chai, which was the first thing I asked about. “Did I lose my chai? I’m okay, but did I lose my drink?”

My knee is messed up and my back is none too happy, but my pride was severely wounded. But then I remembered a few things that got me through it. Here’s an example:

July 16, 2008 – I crawled to my phone to call 911 because I could barely move and was in the most pain of my life. My PJs had managed to make their way clear down my butt and I was in too much pain to pull them up. I mean it was impossible. I tried valiantly. As paramedics, firemen, police officers, you name it came into the house, they were all exposed to my bare ass.

This isn’t the first time I’ve fallen. It’s actually like the third or fourth time recently. It bothers me beyond the whole pain factor. I don’t like to think about what’s causing it and when t could happen again. I also don’t like thinking that I’m doomed to wear flats and trainers indefinitely.

How I Fall Asleep at Night

At night I fall asleep listening to my iPod, and I think about all the things I am going to do when I “get better”. Among these things are physical therapy, walk my dogs, get some cardio, take some hikes in the foothills, ride bikes... lots more.

But way, way up on the list is dancing. I am going to go out on the weekends and dance until I can barely move my feet home. There will be tango lessons and salsa dancing and just general booty shaking deep into the night! Aw, yeah.

Spinal Cord Stimulation

Here’s what I hope to try next: spinal cord stimulation. Just click the title for a link to a very informative website.

Why I'm Happy to Be off Pain Killers (but still in pain)

It has been about two months that I’ve been completely off narcotic pain killers. I still take a drug called Neurontin at night, but it works differently as isn’t a narcotic. So why am I happy about it? Here’s a list:

1) Lucidity! For the first time in a long time I remember conversations and can THINK! I got my first A on a test since I started school again a year ago (and just to brag, I didn’t even have the textbook).

2) Being present. My husband feels like he has his wife back, like he has his companion back, not just some mostly comatose chick drooling on the couch next to him.

3) Making decisions & choices. I can actually make rational, pragmatic decisions for my life and think beyond just the day before me. It’s amazing to have a little bit more of a long term perspective again.

4) Loving my dogs. Being able to see how much my dogs love and need my attention has been wonderful. Just to see their reactions to me waking up in the morning and being able to look them in the eye and connect with them has been so rewarding. Smacked-out drug-girl could never do that.

5) Pain. This may sound counterintuitive, but it is true. I feel everything. The pain killers never took it completely away unless I really took a lot of them (sadly, as prescribed). And in feeling everything, I’ve been able to isolate where the pain is and what kind of pain it is. I have learned more in the last two months than I had in the past year.

This whole thing sounds a little Pollyanna. But I am grateful to be making informed treatment choices again and not just going along with doctors with overflowing caseloads to which I’m just a number. Don’t get me wrong, I am in pain all the time and I feel it always. I am more limited than ever, but I do my best. Some days are better than others. But in feeling it, feeling all of it, I feel alive again.

Migraine follow up note

Just a note of follow-up: the drug that works best for my migraines is called Treximet. But even with my insurance, it costs over $300 for only 18 pills! So I’m going to try a different medication and hope it works nearly as well. Insult to injury, or just injury?

Migraines

I haven’t posted in awhile, but for good reason. First, some history. I have a pain pump. It is currently turned off as it only helped me during the trial, and not in the year of adjustments made after. Post pump surgery I got a spinal headache (it took a month to get rid of it, even with a blood patch). Awful, horrible, terrible. Since then I have periodically had migraines. Recently a neurologist diagnosed me. For the past week, exactly one week, I’ve had these evil headaches every single day. And I can’t help but wonder, are they all related somehow back to the spinal headache?

Running on empty

I once read that having chronic pain is like running a marathon everyday for your body. Apt.

The List Goes On and On

Today I had a contrast-dye CT on my lumbar spine. The technician asked if I’d had any other imaging performed since the onset (car crash April 7, 2006). Oh yes, I’ve had imaging. Here’s a list:

3 X-rays,
3 MRIs,
2 CTs,
countless fluoroscopy.

If I were to start to detail the many procedures and diagnostic tests I’ve undergone, I’d been up all night. I’m sure my numbers can be beat. I just hope they don’t go any higher.

PS Contrast-dye makes you feel like you are peeing your pants!

Phenomenon: A racing heart

The first time it happened I was terrified. I thought maybe I was having one of those really bad reactions to a medication… or worse. At the time I was in a significant amount of pain. I could feel my heart start to race, and it felt as if my own heartbeat was bruising me from the inside out. My pulse was as fast as when I ran my first 5K.

Then it became a fairly standard occurrence. Whenever my pain ratcheted up the pain scale, my heart would reaction as adrenalin kicked my body into fight or flight mode. But as so many of you know, there is no flight. There is only fight. I practice deep breathing techniques learned in yoga. I listen to soothing music on my iPod.

But sometimes I just listen to and feel the crashing of my heart in my chest and the deep pain accompanying it. A heartbeat means you’re alive after all.

American Chronic Pain Association

Support via website... just click title.

First Post

So this is my first posting. Let me explain the point of this blog. It’s not to (a) bitch about my sufferings, (b) whine and complain, or (c) burden the world with my troubles. It’s just there are many of us dealing with chronic pain and we deal with our issues largely in silence. We deal with unbelievers and skeptics. We deal with people who just don't understand (but maybe they pretend they do...) I wish to only chronicle what I’ve dealt with over the past (nearly) three years and maybe someone can relate, feel validated. I must warn you: I may not be very consistent and I may not always have nice things to say. But maybe you won’t either. What I do know is we will get through this, alone or together.