10/21/15. The post where I go back to the future.

10/21/15: a lot has happened since my last post.  Mostly business trips and rehearsals.  I made it through my annual charity musical with no major snafus and spent most of last weekend recuperating. Just in time to start a two-city, eight-day business trip.  The night before I left, I had a mini flare-up that I feared was going to cause a serious disruption to my travel plans, but by the next morning things were much better.  So far, autumn has been unseasonably warm, which is a bummer for my awesome sweater collection, but great news for my foot.  Things change tomorrow, though.  A massive storm front, followed by travel to a city where temperatures are about 40 degrees colder.  Wish me luck.

This week I have been seriously contemplating the future.  Those of you who know me personally know I have a big job.  And it's about to get much bigger.  I've spent the last two days attending training that has brought home to me just how big it is going to be.  Which means some changes in my personal life, one of which is that I am disconnecting from social media.  I know it doesn't sound like a very big deal, but currently it is how I stay connected with friends and family, as well as several RSD/CRPS support groups.  Although frankly, I have been disconnecting from RSD/CRPS support groups slowly over the last few months already.  While the medical advice I have received and my own Internet research have stressed the importance of emotional support, I don't think most of the online groups I've joined have been very helpful to me.  I've been very fortunate so far to be able to live as "normal" a life as possible, and it's hard enough to ignore the little voice in the back of my head telling me things might change in the future without daily reminders from social media.  So it's time to strike out on my own journey and see where it takes me.  

I won't be totally alone, though.  As I've said before, you guys are my support group - my safety plan. I will continue to protect my privacy, and that of my family and friends, as much as possible when posting.  But you know who I am, and I know who you are. And I thank you.  Here's looking to the future...  http://youtu.be/JwL0HZSc2Sc

10/2/15. The post where I don't step on a piece of glass.

10/2/15: since the last time I posted, HAL seems to be on and functioning properly.  I guess I won't know for sure until we play a game of chess, but the malfunction seems to have been an isolated incident.  

While it is obvious that HAL provides significant pain management benefits, it is not a cure, and my life continues to be unbalanced.  One of the most confounding things about RSD is the unpredictability.  You would think pain is pain, but that is not the case. There are infinite variations on pain, and RSD is determined to introduce me to all of them.  In the beginning, each new variation would take my breath away and leave me curled up in a whimpering ball.  But I am becoming a pro. My reaction these days is more like, "Huh. That's interesting. I've never felt that before."  While I continue to walk across the parking lot in my 3-inch heels.

I had an experience like that this morning.  I had just begun my two mile walk when I stepped on something on the sidewalk.  Probably an acorn or a rock.  No big deal.  But a few minutes later, I got a sharp pain in the bottom of my foot, like I had stepped on a piece of glass.  I felt certain that I had not stepped on a piece of glass. And certainly, a piece of glass had not gone through the sole of my tennis shoe.  But still, it was hard to shake the feeling.  And then, my sock started to feel wet.  I know that unusual sweating is also a symptom of RSD.  But it sure felt like I was bleeding.

This isn't my first rodeo, though.  I was not going to stop and check my foot.  I continued the rest of my walk, thinking, "I'm not bleeding. I'm not bleeding."  But I was not entirely convinced.  When I got home, I took off my shoe gingerly and looked at my foot.  And sure enough, I was not bleeding.  My sock was soaked and my foot was beet red, but I was not bleeding and I had not stepped on a piece of glass.  I felt vindicated.

It made me stop and think, though.  What happens some day when I actually do step on a piece of glass? Or break a metatarsal? Or set my foot on fire?  I have no idea.  Guess I'll cross that bridge when I come to it.  In the meantime, I will appreciate my good fortune. And avoid playing chess with HAL.

9/28/15. The post where my stimulator gets a nickname.

9/28/15: last week was a blur.  I had two out-of-town work obligations, approximately 400 miles apart from each other and from home, which meant I logged more than 800 miles in the driver's seat in a week. Why didn't I fly, you ask?  There was not a flight schedule that could accommodate the timing of the two events. And as you know, flying (not to mention getting through security to get on a flight) poses its own set of pain issues for me, so driving wasn't so bad.  I also logged more than 10,000 steps nearly every day, according to my trusty health monitor watch.  Not too bad for a girl who was still recovering from stimulator implant surgery this time last year.

Friday signaled the end of the work week, but not the end of the work.  The first concert of the music series season was Friday night, and I made it home just in time to make the last frenzied preparations.  My patient, long-suffering husband was playing in the concert, as well as housing, chauffeuring, and feeding one of the musicians, which meant that his week was a blur, too.  With the help of friends and family, everything went off without a hitch.  The concert was beautiful and we hosted a reception afterward.  Then we collapsed into bed, relieved at the thought of a relaxing weekend.

Saturday did not disappoint.  I never left the house, nor did I put on a pair of shoes.  We spent the morning visiting with my parents, who had come into town for the concert. For the rest of the day, we cheered on our favorite baseball and college football teams.  We were too tired to leave the house for dinner, or even to order out, so we decided to scrounge up something to eat from the meager supplies in our pantry and fridge.  Of course, the word "scrounge" takes on a different meaning when you are married to a retired chef.  Saturday night, it meant homemade pizza.  I love nights when we scrounge up dinner.

While I expected to feel the effects of the week on Saturday, I was surprised by how bad my foot felt.  As the day progressed, it was obvious that something wasn't right, but it took awhile to figure it out.  Finally, it hit me that I couldn't feel the stimulator. I know, that sounds ridiculous.  But as you know, the vibration is positional, which means the intensity changes (sometimes drastically) as I move and shift.  In addition, sometimes I still have "phantom" vibrations for quite awhile after I turn off the stimulator.  But here's the weird thing...I never turned off the stimulator.  As you know, there have been times I've turned it off and forgotten to turn it back on.  But not this time.  I am 100% certain I did not turn it off.  And I know I could feel it Friday night.  But I got out the remote control to check it, and it was definitely off.  I turned it back on and started feeling better within minutes.  

I have no idea what happened.  It has worked as expected since then.  All I know is that my stimulator finally has a name...HAL.  http://youtu.be/7qnd-hdmgfk

9/20/15. The post where I talk about gate control theory.

9/20/15: not many changes since the last time I posted.  I continue to stay busy and my flare up continues, although it hasn't gotten worse.  One thing that has changed? I have retired from playing handbells. (In case you are wondering, the pension for retired bell players is not great.)  I've had increasing physical difficulty playing over the last few seasons and we finally rounded up enough new players for me to make a graceful exit.  While I will miss my fellow players, I'm not sorry to have gained a free evening every week. Which I have currently filled again with rehearsals for the musical, but that will only last another month. After that, who knows what I'll do with my free time? Probably something crazy and decadent. Like laundry.

I know what some of you are thinking. Maybe I could stand to do a little less and rest a little more.  So, let's talk about "gate control theory."  I will save you the trouble of looking it up. I tried to find a link to a simple explanation, but everything out there about it on the interwebs is too nerdy, even for me, so here's my version.  Gate control theory is a pain theory stating that there are "gates" controlling pain signals to your brain, and you can close the gates (temporarily) by sending conflicting signals.  My spinal cord stimulator works on this theory.  By flooding my brain with motion/vibration signals, it keeps some of the pain signals from going through.  (As you know from previous posts, the trade off is feeling like my foot is stuck in an electrical socket.  Frankly, it's a pretty good trade off.)

I think my lifestyle takes gate control theory to its logical (some would say absurd) conclusion.  Staying physically and mentally occupied helps me block out pain signals.  That's my story and I'm sticking to it.  Sure, there are times where my pain level gets high enough that it doesn't work.  But right now is not one of those times, so I am taking advantage of it.  

For instance, last night my patient, long-suffering husband and I went to a concert. As spectators, not participants.  A modern concert in a huge hall, complete with flashing lights and pounding bass, where we stood on a concrete floor with 2,000 other people for three hours.  If only it had been outside in an ice storm, it would have included every possible trigger for a flare up. Most people would agree that it wasn't a wise choice for me.  Fortunately, I am not most people.  Because we had a great time.  Did it hurt? Yes. But not any worse than it would have hurt if I'd spent the night sitting on the couch instead. So, maybe there is something to this gate control theory, after all.

9/12/15. The post where I insist on having a good day.

9/12/15: the long-awaited "cool front" finally came in last night.  The temperature only dropped ten degrees, but more importantly, the humidity is gone, which made me do my happy dance. While the front was strong enough to make the humidity disappear, it was not strong enough to make my flare up disappear.  At least not with the same speed.

Both feet were in a bad way this morning, it was a rare Saturday with almost nothing on the calendar, and all I wanted to do was stay in bed all day and whine.  But I didn't.  I know from experience that doesn't really do any good.  So I got up and fixed myself a decadent breakfast.  Then I resolved to stay busy and enjoy the beautiful day.  I walked two miles.  (Which, I assure you, felt miserable physically but great emotionally.)  I ran errands in the convertible with the top down. I did a bunch of household chores. Then, when I'd had enough, I sat on the patio with a glass of wine and looked out at the city, reminding myself how lucky I am.

My day isn't over. My patient, long-suffering husband has a gig tonight, so I am going to a concert.  Afterward, we and our musician guest have a date with college football.  Thank goodness for DVR.  This is the worst I've felt in awhile, but it's also the nicest day I've had in awhile.  What a difference ten degrees make.

9/11/15. The post where I wish it would rain...until it does.

9/11/15: I've spent the last few weeks ramping back up to whirling dervish mode.  In addition to work, the music series, rehearsals, and other commitments, it's time for the annual charity musical.  Which I agreed to do, of course, because I don't always exercise good judgment when it comes to my calendar. On Tuesday, I ate all three meals at my desk at work.  I am going to try not to make that a habit.

The skies have been threatening rain for almost two weeks, which has resulted in a mini-flare up.  While it has been manageable, I've been wishing for the rain to hurry up, in hopes of getting rid of the humidity.  Every day I have checked the forecast, only to be disappointed.  Finally, it rained a little on Wednesday evening.  Which just made the humidity worse.  So much for my little theory.

Thursday was a busy day.  I was having a few friends over after work, and then we had a musician staying with us for an upcoming concert. This isn't my first rodeo, so I knew exactly how much time I needed to prepare.  I just needed to leave work 30 minutes early for a quick run to the grocery store and I could have everything ready before anyone arrived.  I was able to make my getaway on time and I knew exactly what I needed at the store. So far, so good.

As I stood in line at the checkout, I heard a thunderclap.  Uh, oh.  Then another.  Then the heavens burst open.  By the time I checked out and pushed my cart to the store entrance, it was jammed full of people watching the storm. People who weren't expecting guests at their house in 20 minutes.  After a few minutes of hesitation, I hiked my grocery bags onto my shoulders and prepared to brave the deluge.  At least I had an umbrella in my purse.

Or should I say, half an umbrella.  It has been so long since it last rained, I forgot that my umbrella had suffered a disfiguring accident.  Several of the ribs were bent and the fabric was torn on one side.  Oh well, it would have to do.  As I stood just under the awning, in my work clothes and heels, with grocery bags on both shoulders and a mangled umbrella over my head, I asked the crowd to wish me luck.  As most people laughed or wished me luck, someone helpfully said, "Don't try to run!"  Excellent advice, actually. I stepped out and slogged through water higher than my shoes across the parking lot to my car.  By the time I loaded my bags and got into the car, I was soaked, the inside of my car was soaked, and most of my groceries were soaked.  But I made it.  As I left the parking lot, I flashed my onlookers the V for Victory sign.  In my mind, they were all cheering me on. But more than likely, they were shaking their heads and posting pictures of me on their social media. #lunatic

I made it home, dried off myself and my groceries, and still had things ready(ish) by the time everyone got there.  The storm only lasted long enough for me to drive home, so my guests were dry when they arrived.  A fine time was had by all.  And guess what? It is still humid today, and my flare up has not abated.  I'm done wishing for rain.

8/26/15. The post where Mom reminds me how to fight like a girl.

8/26/15: trying to get back into the swing of things.  We got home from our vacation Friday night and immediately shifted back into panic mode.  Houseguests, hosting a charity wine tasting event, and then beginning final preparations for our upcoming annual music series fundraising gala.  After a whirlwind weekend, going to the office Monday morning was almost a relief.  Almost. 

My foot hasn't been any happier about returning from vacation than I have been.  A combination of wearing "real" shoes, daily workouts, humidity, and frenzied activity has caused a fairly decent flare up. But nothing I can't handle. Because I am my mother's daughter.  

Mom finished her last radiation treatment today.  We didn't know until yesterday that today would be the last one.  You may remember from my last post that she'd had a setback. I didn't share any details then, but at the end of what was supposed to be six weeks of radiation, her medical team discovered they had not been radiating exactly the right location, so the tumor was not gone.  They gave her the option of taking a break to recover while they worked out plan B.  But taking a break is not what she had in mind.  She didn't miss a day of treatment.  They recalculated the radiation points and she muscled through.  Which was a good decision, because the new points worked like a charm.  And today, we got an email with a subject line that said, "We got it!"  Best email ever.  Maybe not the end of the story, but the end of a chapter.  And what a great way to end it!

You're never too old to learn a life lesson from your mom.  You're also never too old to learn a new song from your mom.  You may know it already, but here is a link for times when you need a fight song:

http://youtu.be/xo1VInw-SKc.  (Sorry you have to watch an ad. Guess it's the price we pay for all this fancy technology.)  Bring it on, RSD.  'Cause I've still got a lot of fight left in me.