1/30/14. The post where I explain the blog name.

January 30, 2014:  another fairly good day.  My foot started swelling again last night and was swollen all day today.  I hoped that would end when I quit taking the Lyrica, but apparently it is RSD-related.  I had a pedicure today, which felt great while I was having it, but caused some issues later.  Rats.  On the plus side, my toes look great.

Between my reduced clothing and shoe options and the need to dress warmly, I look a little less put together each day.  If I were a celebrity, I could pass it off as "eccentric", but on me it looks a little more like "vagrant".  Looking forward to the warmer weather this weekend.

A couple of housekeeping items - I added dates to the titles of all my posts to date on the request of a friend who reads diligently every day and wants to make sure she doesn't miss any posts.  Advance apologies if my editing results in all the posts being sent again to the people following via email.

Also, some of you have asked about the name of the blog.  It is named after my response to a well-meaning but socially awkward co-worker, whose question to me the first ten times she saw me after I returned to work was, "Does it still hurt?"  Yes, it hurts.

One of the reasons I bring up the well-meaning but socially awkward co-worker is that I had an interaction with said co-worker today that was frustrating, but also made for interesting research into my disorder.   The co-worker (let's use the term "she" for purposes of the story) cornered me today.  After asking me again if it hurts (yes, it hurts), she asked if it would make me feel better to hear a story about someone else going through a rough time.  I said "no, it wouldn't", and she said, "well, I'll tell you anyway because it's an interesting story."  She then proceeded to tell me about a relative who is dealing with the effects of a very serious injury.  While I tried to chew my leg off and escape, she continued with a story about a relative who also has RSD and why I was lucky my situation was not like her relative's.  She finished by giving me advice on how I should deal with RSD, based on a text message exchange she had with her relative.  Did I mention that she has a particularly distinctive accent and loud voice?  And that the entire time she was talking, I was standing awkwardly in the door to my office holding the lunch I had just heated in the microwave?

One of the things I've learned in my research is that because the sympathetic nerve system is responsible for the "fight or flight" instinct, stress and loud noises can trigger the symptoms of RSD. Guess what?  They can.  Next time, I guess I'll have to pick either fight or flight.  Option C (aka standing there imagining chewing my leg off and escaping) was not effective.  Fortunately, I did not choose Option D (aka throw my lunch at her and slam my door, which I guess includes fight and flight).  I still have some self-control.

Another PT appointment tomorrow.  I'll try to talk them into taking a photo so you can see what the harness looks like.  It's the least I can do to entertain you on a Friday.
 

1/29/14. The post where I read a scarier blog than mine.

January 29, 2014: much better day today.  Slept remarkably well (once I got to sleep) and woke up feeling a lot better.  The weather is still unseasonably cold, so I made sure I dressed warmly today and wore thick socks.  It definitely seems to make a difference.  My patient, long-suffering (and incredibly sweet) husband assures me I am still cute wrapped in multiple layers of clothes.  I'm not so sure.

Made it through most of the day at no more than a 6, even after a full day at work and two hours of choir practice.  Woo-hoo!

As you all know, I've been doing a lot of Internet research to try to educate myself about RSD/CRPS.  I also "follow" an RSD association on Facebook, and they periodically post interesting articles, research, questions, etc.  They posted a link to a blog published today by the father of a teenager with this disorder.  (You may remember from an earlier post that right now, the mean onset age of RSD is 42, but it is beginning to be diagnosed more often in children and teenagers.)  

I really struggled over whether to share this link with you.  Today was such a good day, and I wanted to write a light, funny post.  Ultimately, though, I decided it was important to share it.  Sorry.    

http://www.huffingtonpost.com/jim-moret/personal-health-_b_4682631.html

I can't imagine struggling with this as a teenager.  Being a teenager is hard enough as it is.  While yesterday was a new low for me, after reading this, I feel very fortunate.  I have 45 years of experience as a happy, optimistic person and a strong support group of friends and family to get me through bad days.  My story might be very different if this had happened 30 years ago.  While I will probably never write a blog that is published in the Huffington Post, I also will probably never write a blog as dark as this one.  That's not how I roll, and I hope it never will be.  

Now, if you'll excuse me, I'm off to enjoy a glass of wine and savor the last few minutes of a good day. Here's hoping tomorrow is as good.  Cheers.

1/28/14. The post where I tell you about the lamest snow day ever.

*Spoiler alert - this is going to be a long post.  You may want to grab a snack or something to drink before settling in to read it.*

January 28, 2014: late last night, I got an email from my employer saying the office will open at 10am due to expected icy roads.  Sounds like I get to sleep in.  Excellent!  Then I check my calendar - PT appointment at 8am.  Bummer.  At least I won't have to take sick leave.  I settle in for a fitful night's sleep, as the cold weather appears finally to have lived up to my expectations and ramped up the pain.

At 5am, my phone alerts me with some frantic vibrating that the battery is about to die.  Looks like the charger either came partially unplugged or died.  If my phone dies, a) my alarm won't go off, potentially causing me to miss PT or, b) I miss the call from my PT cancelling my appointment and brave the cold and ice unnecessarily.  I don't like either option, so I find a new charger, plug in my phone and ensure it is charging, and climb back in bed.  The pain in my foot was not bad enough to wake me up, but now that I am awake, it is bad enough to keep me that way.  I huddle under the covers, cursing Apple and climate change, until it is time to get ready for PT.  As I am bundling up to leave the house for my appointment, the phone rings. It is my PT - she's stuck on the road trying to get in and wants to reschedule me for 10:30.  I decide to have a leisurely breakfast and take care of some work from the comfort of my couch.

Mid-morning, I get another email from my employer.  Conditions continue to be bad and the office will not open until noon.  So, other than not getting to sleep in, I'm in just as good of shape as I was last night.  Or so I think.  About 10am, I get another call from my PT.  She is still in traffic - can we reschedule for 1pm?  At this point I am glad I am not her, so I readily agree.  I can still be in the office by 2:30, 3pm at the latest.

Finally get to my appointment at 1pm. She begins by taking measurements to check my progress since the last session.  Using what looks like a protractor (and maybe is, in fact, a protractor), she determines that I have more mobility in the right foot than last time.  She also uses a tape measure to determine that the foot is 3cm less swollen than last time.  Woo-hoo!  (Must have been the Lyrica.)  She has me do some fairly simple exercises and watches me walk, gently reminding me that my strides are still too long and I'm still walking too fast.  I feel like a charm school reject.  She also massages my foot and leg muscles for awhile, which doesn't feel as good as you would imagine.

Then the real fun begins.  We go to the treadmill and she begins to fit me into the harness to keep the weight off my foot.  This is what it feels like:

But I'm pretty sure this is what it looks like:

She sets the timer for four minutes at a very low speed and I begin walking.  At about two minutes in, I get an unpleasant surprise - my left knee starts catching.  She stops the treadmill for a minute and I stretch it out.  She starts it again, and I make it another minute before it happens again.  She decides three minutes is sufficient.  We go back to the table and she works on my knee for a few minutes until there is a loud crack, which she claims is a good thing.  I bundle back up and head home to change clothes for work.

By the time I get home, it is obvious I won't be going to the office today.  The combination of PT, cold weather, and driving has done me in.  I snuggle up under a blanket on the couch with my warmest slippers on and finish working from home.

I'm pretty sore from the PT exercises and my knee isn't too happy with me, but those things are to be expected and I can live with them.  What's scaring me is the continuing pain in my foot.  I joke about the 1-10 scale, but there are times like tonight when I honestly don't know how to categorize it.  I'm just going to use 9+.  Right now, I'm determined not to use any pain medications that will affect my ability to function in a way that I consider normal.  I only have a week until the nerve block, and I'm banking on it working.

My other fear is the increasing pain in my left foot.  For the moment, it's confined to my big toe and there is no discoloration, so I will chalk it up to cold weather, arthritis, and PT.  If it doesn't improve when the weather warms up this weekend, I guess I'll have to come up with a plan B.

And I just swallowed my gum.  http://movieclips.com/nM9aq-the-sure-thing-movie-i-have-a-credit-card/

1/27/14. The post where I talk about control.

January 27, 2014: finally, some relief.  Woke up at around a 6, and stayed there much of the day.  A very busy day.  If you had told me six months ago I would appreciate a day spent at pain level 6, I wouldn't have believed you. But here I am, and it was a good day.  I'm fading tonight, but I expected worse with my activity level and the cold front that has blown in today.

And that's what's freaking me out.  I am used to being in control, and this is not something I can control or predict.  I don't know how I'm going to feel from one minute to the next, let alone from one day to the next. This had better not be some sort of metaphorical life lesson about letting go and facing fears.  But if it is, I hope they make a movie out of it.  A real movie, not one of those Lifetime TV movies.  And I hope Sandra Bullock plays me.  

Physical therapy in the morning, road conditions permitting.  They're going to have me walk on a treadmill while in some sort of harness to keep the weight off my foot.  (I'll pause a moment to let that mental image sink in.)  I already feel ridiculous, and I haven't even tried it yet.  At the very least, I should have a good story to tell tomorrow. 

As I write this, the pain is steadily ramping up.  Maybe the long day and cold weather are affecting it after all.  Which means maybe I am starting to be able to predict it.  Sandra Bullock will be very disappointed to hear that.

1/26/14. The post where I try to stay positive.

January 26, 2014: wow.  Today was a rough day.  I'm not sure I can use pain scale numbers anymore without getting into multiple decimal points. (I told you I was terrible at this game.) There were a few times this afternoon I thought I might throw up.  I also had an interesting new sensation tonight where it felt like I stuck my toe in an electrical outlet.  I'm going to have to look that up later and see whether it's a normal symptom, whatever "normal" means these days.

My first nerve block is scheduled for February 4.  That seems like a long way off right now.  Hoping for at least a few better days while I wait.  Otherwise, it's going to seem like a long way off for everyone else, too, especially for my patient, long-suffering husband.  I'm doing my best to stay positive, but that's easier some days than others. So let's go through the positives:

1.  The choir sang a beautiful, moving piece in church this morning and then my patient, long-suffering husband played another beautiful piece.

2.  Had a nice lunch with family and a musician friend who was in town for the weekend.  

3.  Saw a fun opera featuring some great performers.

4.  Have heard from lots of friends this weekend with positive messages of love.

5.  Today was a beautiful, sunny, warm day.

6.  My foot doesn't look like a sausage.

There. I feel a little better now.  

1/25/14. The post where I show off my mad hosting skills.

January 25, 2014: slept a lot better than the previous night and woke up feeling better.  It was still cold out, but my body had adjusted.  This was a day I had been looking forward to all week - we were having some friends over for a wine tasting.  I was also a little nervous, as it was the first social event we had hosted since my diagnosis, and it has become clear that I can't predict how I am going to feel at any given moment.  It was a fairly simple event - all we were providing was the venue and a few food items.  A good way to dip my toe back in the social pool.

Started the day by bundling up and going to breakfast with a friend who is going through a rough patch and needed a little company.  (It's not always about me, remember?)  So far, so good.  Back home to meet up with my patient, long-suffering husband to make a grocery list and accompany him to the store.  About half-way through the trip my foot began to protest loudly.  Apparently grocery stores, and society in general, frown upon you lying down in the middle of an aisle to rest, so I slogged on and made it back home to rest.

For the rest of the day, I helped when I could and rested when I needed to.  Fortunately for me and our guests, my patient, long-suffering husband (a former chef), had things well under control.  Despite my lack of assistance, everything was ready when guests arrived.  And by "everything", I mean myself as well.  I was wearing two matching shoes and looked like I was ready to greet company.

The right shoe made it about 20 minutes into the evening.  Hoping to look more like a casual host and less like the tipsy bride in Sixteen Candles, I soon removed the left shoe as well. By the end of the evening, I was sprawled out on a chair with my foot up, letting my guests bring me food and refill my wine.  Not my finest hosting gig, but all went well and a fun time was had by all, including me.  

1/24/14. The post where I quote "This is Spinal Tap".

January 24, 2014: big weather change last night.  Temperature dropped from 80 degrees on Monday to the lower 20s Thursday night.  I had read that cold weather can aggravate RSD.  Guess what?  It can.  I thought that staying inside in my warm, cozy home would keep it from being an issue.  Guess what?  It didn't.  (Apparently it's more of a barometric pressure issue.)  Looks like I will now be an amateur meteorologist.  The pain gradually increased in the night, resulting in very little sleep and a very unhappy me today.  Luckily for my co-workers, the temperature drop was accompanied by enough ice that work was cancelled today.

Today, the pain was up and down, but consistently in the 7.5-9 range and a few times I would have called it a 9.5, which is the worst it has been so far.  I'm beginning to think that I have been miscalculating my pain levels on the scale.  I'm also beginning to fear that the scale goes to 11.   (In case you've never seen This is Spinal Tap, here's a link that feels very appropriate today: http://www.youtube.com/watch?v=4xgx4k83zzc.)

I have also resigned myself to the fact that I will not be riding in the charity bike ride I do every April.  I had been harboring a secret hope that I might be able to start riding again soon and could at least do the shortest distance.  I even went to my PT appointment on Wednesday prepared to ask if I could start riding again.  (What can I say?  I'm an optimist.)  After an hour of being told to slow down to keep from aggravating it further, I decided they might question my intelligence if I asked to start cycling, so I refrained.  Guess that will have to be more of a long-term goal.

In better news, the side effects from the Lyrica appear to be completely gone, including the water weight.  I'm not cancelling that muumuu order just yet, because I am still about 12 pounds north of my pre-RSD weight, but I have increased the number of clothing items I can fasten while continuing to breathe.  Small victories.