9/5/16. The post where I celebrate an anniversary of sorts.

Today is a special day. No, I don't mean Labor Day, although that is pretty cool, too. It is my anniversary.  Not my wedding anniversary.  My patient, long-suffering husband and I celebrated that back in June along with around 75% of the other couples in this country.  

I became bionic two years ago today.  Approximately two weeks after my patient, long-suffering husband had back surgery, I had HAL (my trusty spinal cord stimulator) implanted.  In some ways, I am surprised that it has been two years, but in other ways, it seems much longer ago than that.  I re-read my blog from that day and it is amazing how far we have both come since then.  My patient, long-suffering husband has very few back issues these days, although he won't be joining the Olympic gymnastics team any time soon.  As for me, the 5-6 pain level that "didn't feel too bad" the day of the surgery is now fairly rare, thanks to HAL. While I would say the last month or so has been unusually painful for my foot, it's probably a good idea to go back and read about my pre-implant days every now and then so I have a better frame of reference.  Suddenly the last month seems downright pleasant, at least in comparison.  

Before I opted out of most of my online RSD/CRPS support groups, one of the things that caused me the most consternation was the number of people who were suffering through symptoms worse than mine because they were terrified of having surgery. As many of you know, I have had plenty of surgeries in the last ten years, and the stimulator implant was one of the easiest.  While I know not all surgeries go as well as mine and not everyone gets the degree of relief I have gotten from my stimulator, I would have the surgery ten times if it meant feeling like I do now compared to how I felt two years ago.  

And it's a good thing I feel that way, because I may have to have the surgery ten times. The battery life on HAL is estimated at 3-5 years. I use HAL at a relatively low level, but I use it 24/7, unlike many other people with stimulators.  I hope the technology will continue to improve with time, but I can live with an implant surgery every 3-5 years if necessary.  So, while friends are having us over for dinner today to celebrate Labor Day, I will also be celebrating my anniversary.  I hope HAL is getting me something nice.

8/26/16. The post where perhaps I made a bad decision (or two...or more).

8/26/16: the last two weeks have been a little tough. Between the nearly constant rain and a couple of very stressful situations, I've had to push HAL to its limits. But today the sun was out and things seemed to be looking up.

My patient, long-suffering husband is away on business for a couple of days and, as I always do when he is gone, I tried to make the time pass quickly by planning a lot of activities. I am way behind on chores, so today I made a mental list of all the things I would accomplish this evening after work.  I got home and checked the first thing off my list.  Then I carefully considered what chore to do next...and decided to have a glass of wine and watch some baseball instead.

Soon, it was dinner time. I've been back on my healthy eating regime for most of the week and had planned to make something sensible for dinner.  So I can't explain why I decided to spend the evening snacking on leftovers.  Most of which may or may not have been past their expiration dates.  In my defense, one of the chores on my list was "clean out the refrigerator."  Mission accomplished.

As I mentioned earlier, HAL has been overworked the last couple of weeks. To the point that I have started getting some pretty serious cramps in my calf, which is a new and rather unpleasant sensation.  It struck me that I had no obligations tomorrow and I was feeling brave, so I decided to give HAL a break and turn it off completely. Which was a great idea.  For about five minutes.  After an hour, I gave up on the experiment and turned it back on at about half the amplitude. While it is helpful to turn it off periodically so I can check my progress, in retrospect I think I should have stuck with the calf cramping.

I have a four year old nephew whose amazing parents have taught him to communicate on a very high level.  When things go awry for him, as they inevitably do when you are four years old, his go-to response is that "perhaps he made a bad decision."  As I contemplate my Saturday, which is likely to be filled with foot pain that could have been avoided, undone chores, and food poisoning, all I can think is...at least he comes by his decision-making skills honestly.

8/15/16. The post where I run out of spoons.

8/15/16: things have been normal lately.  Which means crazy.  A lot of work and a lot of play, in very hot and humid weather.  And for the most part, my foot has cooperated, thanks mostly to HAL.  In fact, it's been a long time since I've had a really extended flare up and my spoon drawer has stayed full. 

Some of you have probably heard me talk about spoon theory before, but if you've never heard of it, here's the origin.  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ It's a common theme with people who have chronic pain illnesses.  But over the last few months, for the most part (if you don't count that tiny ligament tear), I have felt so good that I haven't even thought about spoons. Which is why I didn't think twice about the aggressive weekend schedule I planned or the storms coming in.

Then I woke up this morning and checked my body's utensil drawer...and discovered I was completely out of spoons.  I looked everywhere.  I would have been satisfied with a ladle, or even a couple of measuring spoons. I spent about 15 minutes trying to talk myself into believing I had a couple of spoons before I gave up and went back to bed.  Fortunately, my work calendar was pretty light and I was able to stay home without too much guilt.  Tomorrow is a different story, so I have to get it together, and I feel like I can.  While I can't say my foot feels any better, a rest day is just what the doctor ordered. As is the delicious, rainy weather soup my patient, long-suffering husband made for dinner. 

Remember that old Alanis Morrisette song "Ironic"?  One of the lines in the song is, "It's like 10,000 spoons when all you need is a knife."  Having 10,000 spoons doesn't sound ironic to me. It sounds awesome.  

8/8/16. The post where I reward your patience.

8/8/16: this post has nothing to do with RSD. You've stuck with me for awhile. I subjected you to a picture of my foot.  You deserve a break. So I am going to tell you a silly story instead.  After which you may wish I had posted another picture of my foot instead.

Flashback to two years ago.  I would have sworn I told you this story, but I can find no recorded evidence of it.  While we were vacationing in Cinque Terre, I bought a beautiful handmade wrap skirt in a local shop.  In a combination of English, Italian, and Charades, the shopkeeper showed me how to wear it and it made sense. Until I got home and tried to wear it for the first time.  Few things will make you feel less intelligent than not being able to figure out how to wear a skirt.  I had several false starts and then I put it away.  On one of Mom's visits, she and I pulled it out and cracked the code, at least in theory, over a bottle of wine. But I was never brave enough to try it in the heat of battle.  

Back to the present.  Our house is on the market and I am contemplating the requisite downsizing that accompanies any move.  The first step in cleaning out my closet is an evaluation of my clothing.  I am trying to wear things that are not in my normal rotation, and at the end of each wearing I decide to either discard it or add it to the rotation.  Eventually, I made it to the wrap skirt.  Sunday morning I had plenty of time to get ready in a calm, collected fashion, so I decided to give it a try. It felt a little like this: https://youtu.be/-yqfUhc4FQY

And I did it. Basically.  I think it looked as good as you could expect for a three-yard long piece of fabric with random slots and sashes that was handmade in a small fishing village in Italy.  I can now say I am as smart as a wrap skirt.  And it stays in the rotation.

Unlike today's dress.  I spent all day wishing I hadn't worn it, and when I got home, I announced to my patient, long-suffering husband that I was discarding it.  He was supportive, as always.  A little too supportive.  So I asked his opinion.  His response? "Well, it makes you look like you are 50."  (Editor's note: while my patient, long-suffering husband is north of 50, I still have a decent amount of breathing room before I get there.)  He tried to soften the blow by suggesting that I shouldn't try to dress too young, either.  "I'm not saying you should wear jellies and a mini-skirt."  Jellies? And a mini-skirt? Is that what the kids are wearing these days?  I didn't think so.  Bottom line - the dress goes away.  But I am not replacing it with jellies and a mini-skirt.  And now I am seriously questioning my patient, long-suffering husband's sense of fashion.

8/6/16. The post where I have an accidental muse.

8/6/16: I think I can officially say my ankle is healed.  I am wearing normal shoes again and I have been back on my walking schedule for a week.  My foot was not especially happy about that development, but we had a talk and I made it clear it was non-negotiable.  It appears I have dodged a bullet and the RSD is not going to spread to my ankle.  I feel relieved and I am trying to be more careful these days, because I am not good with suspense.  

Which doesn't mean everything has been perfect.  It has been really hot the last few weeks. And while hot weather is better on my foot than cold weather, it has also been humid.  Like, I-Love-Lucy-in-the-steam-cabinet humid. And my foot hates hot, humid weather.  Know what else it hates? Grocery stores. I have no idea why, but walking in the grocery store will trigger a flare up in a heart beat. And Friday afternoon was a perfect storm.

After work, I got into my steam cabinet...I mean, car and drove to the grocery store.  Even though I qualified for the "10 items or less" line, it was enough to send my foot into a small tantrum. While I waited in line, I decided to take a photo for scientific/medical purposes. 

Note to self - don't take photos of your feet in the grocery store. Unbeknownst to me, the man in front of me noticed what I was doing and suddenly he was examining my foot. "Wow, that looks bad. Are you okay?"  I was mortified and it took me a second to think up a response.  Which consisted of a sheepish grin and a "Yes, sorry, I just have a medical issue and I have to take photos to update my doctor."  To which he responded, "No worries. These days people do all kinds of things - you could have a website or something and just be showing off your feet to your fans."  And I immediately thought, "Well that wasn't my plan, but now that you mention it, this would make a good post."  But I decided that was more information than he wanted to know, and he'd already had to look closely at my feet in a place where you purchase food. Instead, we exchanged a few pleasantries and went our separate ways.  

So, thanks to my accidental muse, you now have to look at a picture of my foot.  If you don't like it, you can thank the random grocery store guy.

7/22/16. The post where I am cautioumistic.

7/22/16: I have gone a week without wearing the air cast.  I was a little wobbly for the first few days.  I think I looked a little like this:  https://youtu.be/s3womp1b1I4  But by Thursday, I was getting around well enough to take a short walk before work.  It didn't feel great, but it didn't feel terrible, so I did it again today.  I am also finished with physical therapy.  Okay, technically, I wasn't released from physical therapy.  I just snuck out of the office on Tuesday without making another appointment.  I think I've gotten all I can out of the appointments and I feel confident in my ability to keep up with the exercises on my own.  I've had a couple of RSD flare ups over the course of the week, but nothing I can't handle.

The rest of my week has gone in a similar fashion.  Yes, some scary things have happened in the world. But I also had some fun times with my patient, long-suffering husband and some great friends. I found out today that Fabian Cancellara, the cyclist I've been rooting for the last two weeks, withdrew from the Tour de France.  But it is not because of an injury - he just figured out he can't win and needs to rest up so he can participate in the Olympics, which are only two weeks away.  So I have another chance to root for him.  My mom, who continues her own medical journey, had an uncomfortable procedure this week, but one that we hope will give her some relief from the even more uncomfortable situation she's been in for the last few months.

An awesome woman who has been my hair stylist and friend for more than fifteen years taught me a word that describes how I feel right now.  She calls it "cautioumistic" - an abbreviation of cautiously optimistic.  I'm not sure if that's the right way to spell it, but that is the beauty of a made-up word.  I am cautioumistic for me, for my mom, for Fabian Cancellara, and for the world. And I hope you all will be, too.

7/15/16. The post where I am reminded to keep pedaling.

7/15/16: my ankle has been improving over the last week.  My physical therapist is fascinated by RSD and continues to ask a lot of questions, which I am more than happy to answer.  I am going to try to jettison the air cast this weekend - while four weeks of flip-flops has been fun, I am ready to move on to more interesting footwear. Those summer shoes aren't going to wear themselves.  

My attitude, however, did not improve as much as my ankle.  I was able to get through much of the last week by imagining that my patient, long-suffering husband and I could sell all our things and move to one of our favorite spots in the world, Villefranche-sur-Mer.  It is a small village in the South of France on the Mediterranean Sea where we spent one of the happiest weeks of our life together. (And when you can call a week in which your patient, long-suffering husband walked through a plate glass window one of the happiest of your life, that is saying something.)  We have long dreamed of retiring there and last week, moving up our plans seemed like a great idea.  It is the best of all worlds - small enough to get away from it all, but conveniently located eight kilometers from Nice for those times you need the big city.  

We were reminded again last night that you can't escape the world.  We found out about the tragedy in Nice as we were leaving to celebrate Bastille Day with friends.  The celebration was a little more subdued, but also much more meaningful.  Since we are all cycling enthusiasts, we watched yesterday's Tour de France stage, where I learned another life lesson.  To set the stage, the finish line had to be moved at the last minute because of high winds, which resulted in more spectators crammed into a smaller area that was not sufficiently barricaded.  Chris Froome, the cyclist who was currently in first place (the yellow jersey, or "maillot jaune"), was with a group of riders near the front of the pack and was poised to retain his lead.  With less than one kilometer to go (for those of you who are metrically challenged, it was approximately half a mile) to the new finish line, the throng of spectators was so large it blocked the route and the motorcycle cameraman in front of the riders had to come to a sudden stop.  And then all hell broke loose.  

https://www.theguardian.com/sport/video/2016/jul/14/chris-froome-forced-run-up-mountain-stage-12-tour-de-france-video

A rider crashed into the motorcycle, causing a much larger crash. Froome's bicycle was not functional and the team cars carrying extra bikes were behind the crash.  Froome began running toward the finish line while the team cars caught up. (Editor's note: no, you can't win the race by finishing on foot.) When the cars caught up, the first bike he grabbed did not have pedals that matched the cleats on his shoes, which meant he could not clip into the pedals. He threw the first bike to the side of the road, grabbed a second bike and pedaled like his life depended on it.  He crossed the finish line, but lost most of his lead.  (Never fear.  The Tour has a long history of fairness to its participants and they froze the stage results at the time of the crash, so he did not lose the yellow jersey.)

The lesson I learned was not that fans can be real jerks sometimes. (That is a post for another day.)  No, the lesson was that you may not be able to escape trouble, but you have to keep pedaling. Or running.  So I guess I will postpone my retirement plans and put on my big girl bicycle shorts.  And hope the cleats match the pedals.