7/30/15. The post where I spread myself too thin.

7/30/15: yes, I know, the title of this post could apply to just about any day of my life.  But this week was classic Valerie.  Here's what I've been up to since I last posted:

Monday - work, rehearsal for acting class

Tuesday - work, happy hour (to see friends who are on a brief visit back to town after moving to Germany about a year ago), acting class

Wednesday - out of town all day on business (four hours of driving, six hours of meetings), back home just in time for a late night video shoot for our music series

Thursday - work, grocery shopping, cooking and prep work for a party we are having tomorrow

Yes, I know, other than work, all the busyness is self-imposed.  And yes, I know, the first step on the road to recovery is admitting you have a problem.  I'm a pro at the first step, I just never seem to make it to the second step, whatever that is.  While I firmly believe all this activity didn't cause my most recent flare-up (because I was also this busy while I was feeling well), I'm sure it isn't helping, either.  

Nor is the lack of sleep.  I haven't managed to spend enough time in my bed this week, but more annoyingly, the time I have spent in bed hasn't been very productive.  Right now, the freeway near our home sounds a construction zone, because...well...it is a construction zone.  In theory, I appreciate them doing the work in the middle of the night to lessen the impact on traffic, but since I don't travel on the freeway during rush hour, it doesn't really benefit me. I feel like I'm taking one (or five) for the team. You're welcome.

I've tried three or four different stimulator programs this week and none of them have matched the magic program.  Less pain relief, more irritating vibration patterns.  Not a winning combination.  Still, I held it together pretty well for most of the week.  Tonight was the worst I have felt in a long while, and unfortunately, it was both feet.  I'm hoping they will feel better tomorrow.  All I have to do is work half a day.  Oh, and entertain about 60 people.  No worries - I've got this.

7/26/15. The post where my luck runs out.

7/26/15: it was a good run.  And I knew it wouldn't last forever.  For the last few days, I have had some brief periods where I felt like the dam was about to burst.  And today, it burst.  I went to the grocery store after church, and when I got home my foot was red and swollen.  Worst of both worlds - pain plus pins and needles.  Time to change the program.

I changed the program.  A few times.  But the magic is gone.  I shouldn't complain, it's still only about a 4.  I have this brilliant vision where I change programs for a few days and then go back to the magic one.  And in my vision, it works again. We'll see...

7/22/15. The post where I walk faster.

7/22/15: prior to my blogging hiatus, I had just started really working out again for the first time since my surgery.  I continued the trend during the hiatus, with a few breaks for flare ups and nerve blocks.  I even rode 20 miles in a charity cycling event.  I was very happy to ride and proud that I made it to the finish line, but I'm not anxious to do it again, at least in the near future.  It felt like my pedals were covered in metal spikes.  (#terribleproductideas)  I decided I'd better concentrate on walking for awhile.  

I have returned to walking two miles every morning and I'm walking my previous, hilly route rather than on a flat track.  My speed, however, has not increased significantly.  In fact, my walking has been more like this:  https://m.youtube.com/watch?v=XYoBOhZvBEw. So this week, I decided it was time to do something about it.  I understand that I will probably never get back to my pre-RSD fitness level, but I'm going to keep trying.

The first step (Get it? "Step"? I kill myself...) is to concentrate.  While some people listen to music when walking or jogging, I use the quiet time to solve the world's problems.  Which may be good for the world, but it's not so good for my stamina.  The more I think, the more slowly I walk.  Guess multi-tasking is not my thing.  But for the last four days, I have spent my walks concentrating on increasing my speed and heart rate.  And it seems to be working.  I've taken two minutes per mile off my walk and my heart rate is staying consistently higher.  Sorry world, you are going to have to solve your own problems for awhile.

Does walking faster hurt? Yes, it hurts. But not any more than walking slowly. Or sitting.  And my pain level has continued to be mercifully low over the last few weeks, so I am taking advantage of it.  I feel certain that at some point my current stimulator strategy will cease to be effective, but so far, so good. For a brief period this afternoon I thought about turning off the stimulator for awhile to give myself a break from the pins and needles, but I lost my nerve.  I'm going to keep riding this wave for as long as I can.  And no lollygagging.

7/19/15. The post where I talk about my stimulator.

7/19/15: still hanging in there with my current stimulator setting.  A little background, since it's been awhile...the stimulator sends vibrations down my affected nerve in varying patterns and amplitudes, depending on the setting I choose.  The vibrations are meant to drown out the pain signals and keep my brain occupied.  I've had the stimulator since last September and I've had varying degrees of success, partially because I'm not that crazy about the sensation caused by the stimulator.  It's like the "pins and needles" you get when your foot falls asleep and then you stand up and walk on it.  Admittedly, that is a lot better than pain, but I have resisted it.

The stimulator is also "positional."  I will probably date myself for a second time this week, but the best explanation I can give is that it is like the static you hear if you bend a wire on your stereo speaker or radio antenna.  (Oh dear...only Gen Xers and hipsters will have any idea what I mean by that.)  Any time I change positions or shift my weight, the amplitude of the vibration changes, sometimes exponentially.  This is very disconcerting for a person who values being in control at all times.  But after a tough winter and spring, I decided a few weeks ago to go all in.  After all, having the stimulator implanted was an ordeal - physically, mentally, and financially. I might as well get the most I can out of it.

My previous strategy was to turn the stimulator up to a point where I could barely feel it, which meant that when I changed positions, it sometimes shocked me.  My new strategy is to find a setting I can live with and turn it up to a point where it shocks me constantly, which means that when I change positions, it sometimes stops shocking me.  And guess what?  It seems to be working.  Other than a few brief moments, my pain level is the lowest it has been in recent memory. 

RSD is a serious diva.  I know it is waiting, just below the surface, for a chance to be in the spotlight again.  Just this morning, while I was still in bed, I purposely moved into a position where the stimulator stopped vibrating, because every now and then it gets overwhelming.  Within ten minutes, the pain was back.  Guess the vibrations are not so bad after all.  

p.s. In the category of "things that really matter," yesterday the South African team (dramatically and improbably) won a stage of the Tour de France on Nelson Mandela Day.  And Mom has finished her first week of radiation, with very few side effects.  One week down, five to go. 

7/16/15. The post where I have an unexpected victory.

7/16/15: today was the first day of my annual continuing education class.  At the risk of dating myself, this is the 22nd year I have taken this particular class.  (Yep, I just dated myself.)  However, the location changed two years ago.  And when I walked into the room today, I made a surprising discovery.

The room is laid out like a modern college classroom - an auditorium style with long tables that stair-step down to a stage in the front.  The top row of seats, closest to the entrance, have a sign saying they are reserved for the "mobility impaired."  Two years ago, the first time the class was held in this location, I was wearing the "long" boot to recover from what my doctor thought was just a broken bone in my foot.  So I sat in the mobility impaired row.

Last year, the class started a day after I had a surgical procedure to install the trial spinal cord stimulator for a week to see if it would provide any relief.  I had two incisions in my back with wires coming out that attached to the stimulator on my belt.  And...oh yeah...I almost forgot...unbelievably horrific foot pain, which was why I was trying out a stimulator.  So I sat in the mobility impaired row.

This morning, I walked into the classroom and headed straight toward the mobility impaired row. And suddenly I realized, I don't have to sit there! I can sit anywhere I want.  So I proudly walked down several steps and sat in the middle of the room.  Sometimes it's the little things.

7/15/15. The post where I share random thoughts.

7/15/15: I am too tired tonight to come up with a coherent post, so here are a few random thoughts to enjoy:

- I walk two miles every morning before work, and at this time of year I see a lot of deer on my walk. Right now, I regularly see five fawns with their moms...two sets of twins and a single.  I am always surprised that our small, fairly urban area can support so many fawns each year, but it certainly makes my walk more interesting.

- Last night, I made a cake and frosting from scratch for a get-together after work today.  I don't do that very often, but I'm always glad when I do.  I won't win any cake decorating contests any time soon, but it tasted great and everyone seemed to enjoy it.

- I am in a continuing education class for the next two days.  It's the same class I take every year and frankly, it's not that interesting, but after a tedious and tiring work week, I am looking forward to it.

- The Tour de France continues to be fascinating.  If you've never seen it, you should watch at least one stage.  Lots of crashes, injuries, surprise finishes, and unexpected turns of events.  In my wildest dreams, I can't imagine riding it.  It's amazing what crazy things human beings will do.  And I'm just talking about the spectators.  

- I feel like I'm finally getting the hang of my stimulator.  But it could also be the fact that the weather has been consistently hot and sunny for the last week or so.  I'm still getting a lot of crazy color patterns, but my pain level has been very manageable, so I can live with the colors.  

- And speaking of colors, apparently a lot of people have missed knowing what color nail polish I am wearing. (And the really interesting part is how many of those people are men.)  For those inquiring minds, I am currently wearing The Thrill of Brazil from the OPI Brazil collection.  You're welcome.

- Any day that ends with a photo of your three year old nephew wearing underwear on his head is a good day.

7/14/15. The post where I am prescription-free again.

7/14/15: my neck did not heal as quickly as I had hoped.  Monday morning I was still in a lot of pain, so I made plans to go back to the doctor to talk about plan B.  The pain medicine my doctor had prescribed did not appear to be doing anything (other than making me loopy, which as you know is my usual reaction), so I quit taking it.  I went to work, resolving to call the doctor's office as soon as it opened.

And then a funny thing happened.  I got really busy working and when I finally looked up, it was lunchtime and I realized I felt exponentially better.  So, I didn't need a plan B after all. I was really surprised, because I expected it to improve gradually, not in a sudden burst.  But I'll take it.  And the really good news is that I'm off the pain medication and I feel like a human again.  A sleepy human, because after a week of medication-assisted sleep, I didn't feel much like sleeping Monday night, but it was a small price to pay.

Mom started her radiation treatment Monday and so far, all is well.  (We were a little disappointed to learn that it was not enough radiation to give her superpowers.  Fortunately, she kept the receipt for her Spiderwoman suit, so she can return it.)  Two treatments down, 28 to go.  For the rest of us, it will be over quickly, although I know it seems like an eternity for her.  But she'll deal with it like a champ, because that's how she rolls.

I'm still having fairly good luck with my foot.  As I mentioned earlier, I have found a comfortable setting on my stimulator, where I can turn it up to a higher amplitude without going nuts.  Eventually, it will stop being effective and I'll have to change it, but for the moment it ain't broke, so I won't fix it.  The only real issue I've had in the last week was after a grocery store trip this evening.  For some reason, grocery store trips are always an issue.  But after a bit of rest on the couch with a glass of champagne to celebrate Bastille Day, I feel much better.  Vive la France!

7/12/15. The post where I rest.

7/12/15: today was a day of rest.  My neck and shoulder aren't healing as quickly as I had hoped, so I decided to take it easy.  You already know, so I don't have to tell you that I worry at the first sign of an injury, because it is important to heal quickly before the CRPS spreads. So I rested.  My only activity today was attending a friend's pool party.  I spent the afternoon dipping my feet in the pool, chatting with friends I haven't seen in awhile, and snacking.  The next week is going to be filled with activity, so it was nice to have a quiet, restful day.  

My foot has felt surprisingly good for the last week.  The weather has stabilized, I have found a comfortable setting on my stimulator, and I am taking pain medication for my neck. Not sure which is the cause, or if it is a combination of several things, but I am not asking questions.  No point in looking a gift horse in the mouth...or a gift rabbit...  https://m.youtube.com/watch?v=yMyQJAuiYSw

7/11/15. The post where I tell you about my foot tent.

7/11/15: just returned from a quick visit to see my parents.  And this time, we made it back without wrecking my patient, long-suffering husband's car.  Mom starts her radiation on Monday and she's ready to put it in the "done" column.  Five days a week for six weeks. Her doctor is very confident the radiation will take care of the issue - so confident that he used the word "definitely." (Note to Mom's doctor: if you are going to use the word "definitely" when talking to her about treatments, you'd better hope you are right, because her memory is excellent and she will never let you forget it if you are wrong.)

Since it was a very brief trip, I didn't need to pack much, but I did forget one important thing...my foot tent. What is a foot tent, you ask?  I had the same question two months ago.  Those of you who were reading before my hiatus know that I was having a lot of trouble sleeping because it hurt my foot to have the covers touching it.  The odd sleeping positions I found myself in trying to keep anything from touching my foot while still trying to keep it warm would be great practice if I wanted to join a traveling carnival as a contortionist, but they weren't so great for getting a good night's sleep.

As usual, my patient, long-suffering husband saved the day.  He decided he was going to make some kind of frame that would attach to the end of the bed and shield my foot from the covers.  Fortunately, he decided to check the Internet first, because apparently I am not the only person to ever have this issue.  There are multiple products available for sale on the World Wide Web, so he ordered one as a surprise for me.  And what a great surprise!  Here are a couple of photos to show you what it looks like and how it works:

The bottom end of the metal piping fits between your mattress and box springs.

Then you put the top sheet and cover over the rest of the piping. Voila!  Couldn't be easier.  When I get into bed, my feet stay warm because they are under the covers, but nothing is touching them.  I love mine so much that my patient, long-suffering husband got me a smaller, collapsible version for travel.  I took it on our Italy trip and it was a lifesaver.  A lifesaver for my family, because it kept their tour guide from being grouchy and irritable every day.

While I forgot to take it to my parents' house, I still slept pretty well.  Maybe because I am taking medication right now that makes me sleepy all the time.  Just the same, I am happy to be reunited with  my foot tent tonight.  

7/7/15. The post where I learn a lesson in pain management.

7/7/15: for the most part, it was a really nice holiday weekend.  The only issue?  Somehow I managed to strain my left trapezoid muscle on Friday.  Not quite sure how or when it happened, but I suspect I was doing something heroic, like taking dishes out of the dishwasher or putting on my seatbelt.  Welcome to middle age.  

As you know, I'm accustomed to living with daily pain and I feel like my tolerance is pretty high, so I decided to give it a little time to heal on its own, much to my patient, long-suffering husband's chagrin.  But a few days of heating pads and aspirin didn't do the trick, so I gave in and went to the doctor's office this morning, where I got an official diagnosis and a couple of prescriptions.  I have to admit that while it is a relief to deal with a medical issue that looks like it will be resolved in a matter of days, it is still frustrating.

Watching the Tour de France is certainly giving me perspective, though.  The cyclist in me loves watching the Tour every year and I nearly always pick a favorite rider early on.  This year I picked Fabian Cancellara from Switzerland, who is riding his last Tour before retiring.  He's a great cyclist and seems like a nice guy, and it appeared he had a good chance to win in his final year.  (The fact that he is not difficult to look at had nothing to do with my decision, I assure you.)  In fact, as of stage 2 of the race, he was the overall leader and got to wear the yellow jersey for stage 3 yesterday.  

Stage 3 didn't go so well.  Midway through the stage, there was a huge crash involving multiple riders who were riding at approximately 40 mph.  (For comparison purposes, on my very best day on completely flat surfaces, I'm lucky to average about 13 mph.)  http://www.theguardian.com/sport/video/2015/jul/06/tour-de-france-crash-riders-injured-video. In the video, you can see Cancellara (wearing the yellow jersey) fly over his handlebars.  After receiving a bit of medical attention, he got back on his bike and rode another 40 miles, in obvious pain, to finish the stage.  After he finished the stage, he went to the hospital, where doctors discovered he had two broken vertebrae.  He had to withdraw from the Tour today, as did several other riders who were also injured in the crash.  When asked why he finished the stage yesterday, he said he wanted to "honor the yellow jersey."  Wow.  I suppose it wouldn't kill me to get up off the couch and do a load of laundry.  

  

7/2/15. The post where I tell you a crazy (and disgusting) story.

7/2/15: today was Thursday, but it felt like Friday because I have the day off tomorrow.  To celebrate the upcoming three day weekend, I went to lunch with some colleagues.  And we saw a crazy thing. (Those of you with weak stomachs may want to quit reading now.) 

We were eating at a local pizza joint and our table was right beside a full-length window, looking out onto the outdoor patio.  A man was sitting at a picnic table just a few feet from me, separated from me only by the window.  There was a pitcher of beer on his table and he was drinking beer from a glass while he talked on his cell phone.  My colleagues and I were eating our pizza and chatting, when suddenly I saw something out of the corner of my eye.  I looked out the window and saw him (brace yourselves) projectile vomit all over the pavement.  And that was not the crazy thing. The crazy thing was that after he finished, he immediately put the phone back to his ear and continued his conversation.  I'm not sure the person on the other end of the phone even knew what happened.

My colleagues and I sat at our table, stunned.  I got a takeout box for the rest of my pizza.  There would be no more eating for me after that.  (In fact, I could barely eat dinner tonight.)  We stayed at the restaurant for another twenty minutes, marveling over what we had just witnessed and when we left, he was still there.  In fact, he was chatting with the occupants of the table next to his, who arrived after his episode and appeared to be unaware of it.  I have to give him credit.  If I suddenly found myself staring down at the former contents of my stomach in a public place, it would be game over.  I would be curled up in a ball in the ladies room in a combination of agony and embarrassment, calling my patient, long-suffering husband to come pick me up. (At the very least, I would have immediately ended my call and started searching for a damp paper towel.)  But it didn't seem to phase this man at all.  I'm going to guess it isn't the first time this has happened to him.

I fully intended to write today in more detail about some of my experiences during my hiatus, but frankly, I can't get this out of my mind.  And now, neither can you.  Sorry.  Some of you who encouraged me to start writing again are probably regretting that right about now.  But look on the bright side.  At least I didn't post a photo.

7/1/15. The post where they pull me back in.

https://m.youtube.com/watch?v=UPw-3e_pzqU

I haven't posted in more than three months.  And boy, has the time flown by.  So many things have happened since my last post. I spent three weeks in Italy with my entire family.  Mom finished her second round of chemo, just in time for the aforementioned Italy trip.  My patient, long-suffering husband started eating real food again, just in time for the aforementioned Italy trip.  I bought new shoes, just in time for...well, you get the picture.  It was a once-in-a-lifetime opportunity for our family and we made the most of it.  We're all still speaking to each other and no one died, so I'd say it was a success.

What else has happened since my last post? Doctor visits, and lots of them.  I had let a lot of things slide while I struggled with the initial search for a diagnosis and the subsequent treatment.  I have been tested, poked, and prodded by every specialist recommended for a woman my age and I can now say that I am completely healthy.  As long as you don't count that incurable nerve disorder, of course...

The one bit of bad medical news I got was an official confirmation that the CRPS had spread to my left foot.  This was not a surprise, but I had hoped I was mistaken.  The good news? Since I caught it much earlier this time, a couple of nerve blocks have kept it almost completely in check for the last month.  And I hope it stays that way.

My right foot has had a series of ups and downs.  In most cases, the "downs" have been related to weather changes, or intense periods of walking and standing, or a combination of the two.  For instance, three hours in the Vatican museum as a huge thunderstorm rolls into Rome will definitely create a "down."  I also learned the hard way last week that accidentally turning my spinal cord stimulator off for three days is not a good idea.  (Don't ask...)

I needed the break from blogging, but over the last few weeks I have been contemplating a return and coincidentally, I've had several requests from friends and family to start it up again, so here I am.  Not sure I can keep it up every day, so I'd recommend subscribing by email if you want to know when I have posted. (I have no way of seeing who has subscribed, so no need to worry about me selling your email address to strangers.)  Thanks for sticking with me. Ciao!