4/30/14: had a tough time sleeping last night. My foot was pretty upset when I went to bed, so I applied some more cream. It took some time to kick in, but it finally calmed things down enough for me to fall asleep, at least for a little while. It was just one of those nights, though. I may not have slept much, but I did solve most of the world's problems.
This morning we packed up the car and headed out for Mom's first chemotherapy visit. Between the three of us, it looked like we were going on a three-day camping trip rather than a six-hour doctor visit. (I'm sure this surprises none of you at this point.) First blood work, then a visit with the doctor, then down the hall to the infusion center to begin the chemo.
Today was a learning experience for all of us. We learned about the regimen, which consists of several different drugs infused into a port that was inserted under her clavicle last week. At the end of the session, a pump is attached to the port for the final drug, which is infused over a two-day period. We also learned a lot about the potential side effects of the different drugs and the order and timing of the infusions. After all the learning, we finally got to the doing.
All went well, at least as well as chemo can go. We got the patient home and she declared she would like some guacamole, which we took as a good sign. She has had a few minor side effects, but nothing unmanageable. We go back to the doctor tomorrow for a test to be sure the pump is working correctly. Hoping tomorrow goes as well as today did.
4/29/14: I know I said I wasn't going to post today, but a couple of things happened that I wanted to share before I forget. This morning was a continuation of the recent theme - woke up in in the 5.5-6 range and did my PT. As I stood in my closet deciding what to wear to work, I remembered one of the dresses I rediscovered after the lost dry cleaning episode. Great idea! A pretty black sheath dress with a black and ecru embroidery overlay. I had to dig around to find the belt, and it looked a little different than I remembered, but I haven't worn the dress in almost a year, so that is not surprising.
Then I remembered the shoes that go with it. Some of my favorites! Black sandals with embroidery, a peep toe, and a wedge macrame heel. A high heel. But it's a wedge and the shoes go perfectly with the dress. I put them on and admired them. And then I took them back off and wore my sensible prescription shoes instead. Some day I will wear them again, but not today. I hoped that this exercise of good judgment would result in a few more days without pain level spikes.
I went to work a little sad about the shoes, but happy to be wearing my "new" dress. As I sat in my office chair, I looked down and realized something was amiss. You know that belt that looked different than I remembered? It looked different because it was the wrong belt. And by wrong, I mean that it was, in fact, navy blue and not black. Rats. So much for my great fashion day. Frankly, I don't think anyone else noticed. But I knew.
Today was yoga day. It has been going pretty well and I knew I would miss on Thursday so I decided to go. All was going well until the reverse plank pose. For those of you who are not familiar, imagine you are doing a push-up, but your back is facing the ground and your stomach and feet are facing the ceiling (hence the word "reverse"). One of the goals of the pose is to have your feet as close to flat on the floor as possible for maximum stretch. My well-meaning yoga instructor, who was not aware of my issue, came by and "helped" me by grabbing my feet and pushing them toward the floor. Before I could stop myself, I squealed, "Please don't touch my feet!", startling her. And everyone else in the gym. And probably a few people passing by the gym. Yep. I officially just became "that weird girl." I explained myself to the instructor after class, but I suspect I may be banned for life.
So anyone meeting me for the first time today at work would refer to me as the girl whose belt and shoes don't match her dress and who doesn't want her feet touched. And my foot has felt worse ever since the yoga incident. Maybe I should have just worn the good shoes after all.
4/28/14: woke up at about a 6 again. I seem to be settling back into a more familiar pattern again. This is going to sound ridiculous, but I was too busy to use my foot cream until after work today. Applying the cream is more complicated than it sounds. It involves a lot of hand and foot washing, in addition to a prescribed amount of time spent rubbing it in and and letting it dry. Even without using it and taking into account my new morning PT and a decent amount of walking at work this morning, I stayed pretty steady. I have to admit that it made me wonder if the cream was really helping, or if I just happened to start using it during a "good" period.
As I mentioned before, my insurance authorization for PT appointments runs out on Wednesday and my request for an extension was denied, so it looked like last week's appointment unexpectedly was going to be my last one. Or at least my last affordable one. My only available time before the authorization ran out was this afternoon and they were booked. But this afternoon, my phone rang. They had a last-minute cancellation and they could get me in if I could be there in 20 minutes. When I got the call, I was at work, wearing a business suit, with no workout clothes handy. I quickly did the math. Ten minutes to my house (in good traffic), five minutes to change clothes, five minutes from my house to their office. Going today rather than waiting until my authorization expires would save me $100. "I'm on my way."
I made the world's quickest exit from work and walked in the door of the PT office 22 minutes later, ready for action. In addition to the usual drill, he talked with me about how to keep it up on my own, gave me one last pep talk, and encouraged me to come in every now and then if I felt like I could. (I probably will go in periodically, despite the expense. Like I said before, it's only money, right?) He also told me I could call or email him if I needed help or had questions. Physical Therapist-1, Insurance Company-0.
I won't be able to post tomorrow. After work, I will make the drive back to my parents' home so I can be with Mom and Dad Wednesday morning for Mom's first chemotherapy appointment. We are officially in uncharted territory and it will be an adventure. We've picked out some movies to watch and some recipes to make using the officially approved ingredients she was given by the nurse today. I'll check in later this week with movie reviews and recipe critiques.
4/27/14: used the cream again just before bed and by the time I woke up, any relief it may have provided was long gone. I did sleep pretty well, though, so I'll have to presume it worked to some extent.
I knew it was going to be a hot day, so I got up and did my homemade version of PT before church. A slow walk around the block, then 10 minutes on the bike, then my core-strengthening exercises. I am not supposed to shower after using the cream, so I waited to apply it until just before I left for church. I've used it one more time since then and the pattern seems to be the same. Takes a while to kick in, then a little relief for about an hour or so. Unless it is coincidence, I think I can tell when it wears off because my foot turns bright red and feels worse. Unfortunately, that happens after about one and a half or two hours, and by my calculation, I shouldn't use it more than about once every four hours.
Still, it appears to be doing something. Which is more than I can say for the over-the-counter creams. Or the Aleve. Or the anti-inflammatories. Or the Lyrica. Or the four nerve blocks. I'll give it a solid C and keep using it. Today was a relatively restful day for me - a small calm before the storm that is the week ahead. We'll see if the cream gets as good a grade on a crazier day.
4/26/14: woke up in the 5.5-6 range again, which was fortunate because there were a lot of chores on the agenda today. We were whirlwinds of activity and knocked out a bunch of things that had been on the to-do list for way too long. We even put my bicycle on the trainer so I can use it inside as an exercise/PT bike. It was really nice to ride my very own bike again, even if it was only for a few minutes while my patient, long-suffering husband adjusted the trainer.
I also took a slow walk around our block to see if it would be a feasible do-it-yourself PT option. When both your street and your neighborhood have the word "hill" in their names, finding a flat surface for walks is no easy task, but my house happens to be on the only flat block in the neighborhood. One round trip didn't feel too bad, but one was definitely enough.
At my last appointment, my doctor had a few ideas that he thought might give me some short-term relief while I consider the longer-term option he recommended. (Sorry I'm still being mysterious about the long-term recommendation. I figure there's no point going into detail about it until I'm sure I want to do it.) One of the short-term options was a prescription for a cream to rub on my foot. I've tried several over-the-counter analgesic creams with zero success, so I was skeptical, but I figured it couldn't hurt to give it a try. It is a compound of several medications, so it had to be ordered from a pharmacy in another city and it arrived in the mail today.
I decided to try it this afternoon. I was hoping it would be magical fairy dust that would give me total relief, but expecting it to be a total bust. The truth was somewhere in between. For about 30 minutes, I couldn't feel any difference. Then I felt some improvement for about an hour. Then my foot turned bright red and felt significantly worse for about 15 minutes. Then, it was back to normal. And by "normal", I mean the way it felt before I applied the cream.
While I wouldn't exactly call it a success, it was promising enough that I intend to try it again tonight. I used the minimum recommended amount the first time, so I'll use a little more tonight. I can use it up to four times a day, so I'll give it a fair shot tomorrow and sees how it goes. Who knows, maybe there's a little fairy dust in that bottle somewhere.
4/25/14: yesterday was especially busy, so no time for posting. I had a good PT visit and did yoga on the same day, without any apparent ill effects, and got a particularly cute haircut, if I do say so myself. I felt a little better than I had the previous few days - back in the 6 range, even down to 5.5 at times.
As you know from my constant complaining, we've had a run of bad luck recently. Today started off no differently. While getting ready for work, I tried to install a new software update on my phone, causing it to completely implode. The only way to revive it was to restore it to the factory settings. In case you are wondering, this is not a good thing. Although it could have been worse, I spent much of the morning trying to restore apps and make my phone look like it looked before. Without a lot of success.
When I finally got my phone restored enough to check for voice mails, I had two messages from the PT office. Hmm. What could that be? Bad news, that's what it could be. My insurance company denied my request for additional visits. My authorization was good until April 30 and they wanted to try to get me in for one last visit so my PT could put together a home schedule for me, but my work calendar would not cooperate. Looks like my options are to fight my insurance company or pay out of my pocket for one last visit. It's only money, right? (As much as I feel like the PT visits are doing me good, I have to admit my calendar has gotten out of control, even for me, and maybe a little break will do me good. As long as I keep up with my PT exercises. Which I will.)
Not a good start for a Friday. It felt a little like a final straw. I felt that long-awaited meltdown coming on. But I hadn't even made it into work yet. And I had a lot of stuff to do. Not to mention a couple of personal appointments to fit in. I promised myself if I got through the day, I could have a meltdown tonight. And all weekend, if necessary.
So I went to work and got my stuff done. And went to my personal appointments. And realized that not everything was going badly. I got a lovely manicure and pedicure. (Fingers - "I Eat Mainely Lobster". Toes - "Can't Find My Czechbook". Yeah, I know, the names don't give you much clue about the color, but they sure are fun.) I had a really nice coffee break in the afternoon with my dear doctor friend, who has an uncanny ability to reach out when I hit treatment crossroads and need to talk. He also told me some things I needed to hear about "rightsizing" my treatment expectations. Things I probably already knew deep down inside, but needed to hear out loud from someone I trust.
Another good thing about today? I came home to a cool house for the first time in several weeks. My patient, long-suffering husband shepherded the installation of the new AC unit, as well as other related upgrades that were required to meet new city codes because we were getting a new AC unit. (Don't get me started...) I rewarded him for his hard work by making tuna melts for dinner. Because I'm fancy that way. In case you are wondering, Chablis is the perfect wine pairing for tuna melts.
By the end of the evening, I realized I didn't need a meltdown after all. I just needed to keep on truckin' and remember all the good things. Like the fact that my day did not include doing this:
4/23/14: had a great Easter and a wonderful visit with my family. I know it's been a few days, so I won't go into too much detail playing catch up. My foot has felt particularly bad the last few days and I'm not sure why, because I haven't done anything different. Except bake all day Saturday. And wear heels for five hours on Sunday. And spend 14 hours in a car. And walk for three hours at an outlet mall. And forget to do my PT exercises. On second thought, maybe I am sure why.
I woke up this morning ready to turn over a new leaf. We are six weeks away from a once-in-a-lifetime vacation and it's time for me (and my bank account) to go on a diet. While getting ready this morning, I started scheming. This evening would involve carefully planning meals and an exercise schedule (within my limits, of course) for the next six weeks. No splurging, no eating out, no drinking. If I stick with the plan, I should have just enough time to be trim enough to wear a swimsuit, and just enough money to enjoy the trip. What could possibly go wrong?
I went to my doctor this afternoon to discuss the nerve conduction study results and next steps. I have spent the last week trying to convince myself, without success, that this was just inflammation of a nerve I damaged nine years ago and an epidural would do the trick. My doctor did not appear to be any more convinced than I was. He talked in more detail about the nerve damage and Type 2 CRPS. Based on my history and the failure of the nerve blocks to provide any relief, he did not see any use in trying an epidural. He advised me that any treatment will be palliative, not curative. (In other words, it can't be "healed", but they can try to treat the symptoms. I was not terribly surprised by this because of the research I'd done and the information he'd already given me, but it's still not what I wanted to hear.) I'm not going to talk in detail right now about his recommendation for the next treatment step, because it is pretty complicated and I am still doing research to decide if I want to do it. In the meantime, though, he has a couple of ideas that might provide temporary relief while I figure out a long-term plan. And for that I am grateful. I'll share more in the next few days as I start to make decisions.
Great news, part two: we have to buy a new air conditioning unit. Our AC has been on the fritz for the last two weeks and after much detective work, the repair company discovered the issue today, and it is fatal. Mere months after the warranty expired, of course. And we are forecast for highs of 97 this weekend. For those fans keeping score at home, in the last month we've had to do major repair/replacement work to the AC, garage door opener, garbage disposal, elevator, and security alarm. Oh, and my car. (I know, I know - first world problems.) Everything seems to be broken right now, including me.
When it rains, it pours. We celebrated our misfortune with cocktails and sushi. I guess the diet will start tomorrow.
4/19/14: in the middle of a brief stay at home for Good Friday and Easter services before returning to my parents' home (accompanied by my patient, long-suffering husband this time) to spend a little more time visiting with the whole family. Now, to catch you up on the previous trip...
While the nerve conduction study was extremely unpleasant, the pain was transitory, so as soon as the test was over, I felt well enough to make the drive to my parents' home for Mom's first visit to her oncologist's office, where she will go for her chemo treatments. As I've probably mentioned before, I have a brother who lives in the same town as my parents. Since my other brother was also in town visiting, our entire clan accompanied Mom and Dad on the visit.
The employees at the cancer center are probably still wondering what hit them. Any time our family is together you can bet it will get loud, with lots of witty banter and laughing. (At least we consider ourselves witty - others who have the misfortune of being around us when we get rolling may disagree.) We were cognizant of our surroundings and so were careful to be considerate of others, but once we were alone in the lobby, we created what could probably best be described as a "ruckus" while Mom waited to be summoned for her appointment. Because that's how we roll. The nurse found a larger exam room so we could all be in the room with Mom during the visit. Or maybe it was so she could get us out of the lobby.
The visit went well. The oncologist wasn't phased by Mom's entourage. He answered all our questions and proved he could keep up with us when it came to witty banter. She will start chemo treatments in about ten days, and I think we all have a good idea of what to expect. We feel very fortunate to have found a wonderful oncologist and what appears to be a really good treatment center within 20 minutes of Mom and Dad's home.
We celebrated the successful visit by gathering up the rest of the family and taking Mom out for her first restaurant visit since before she went to the hospital. The ruckus continued at the restaurant, with the addition of the two year old and six week old grandchildren to make things even more interesting. We capped off the night with cupcakes, at Mom's request. Our family visits are entirely too infrequent these days and even with the circumstances and a nerve conduction study earlier that morning, I'd say it was a very enjoyable day.
The only thing missing was my patient, long-suffering husband. Which is why I'm taking him along for round two. He and I will head back tomorrow after Easter services and a celebratory lunch with his family. (When you are the music director for a church, making it though Easter services without collapsing is something to celebrate.) No doctor appointments or nerve tests this time. Just a continuation of the ruckus. Let the witty banter begin...
4/18/14: a lot has happened since I posted two days ago, so for today's post, I will concentrate on yesterday morning's nerve conduction study. It was a two-part test: the first part tested different nerves in both legs using conductors that sent electrical impulses through the nerves. The second part tested various muscles in my right leg using thin plastic needles similar to acupuncture needles. I was dreading the second part of the test, but the allure of possibly getting an answer convinced me to try it.
I should have been dreading the first part of the test. How the doctor described it to me: like walking on carpet in bare feet and getting a static electricity shock. How it felt: like walking on carpet in bare feet and getting Tased. By the time she finished my left leg (the "control" leg, done for comparison purposes), I was ready to feign an emergency and run (or limp) away. But I figured I'd have to do it eventually, so I stayed.
Most of the second part of the test (aka the "pin cushion" portion of the event) was actually not as bad as the first part. The only bad moment was when there was a needle in the tendon that moves your big toe and then I had to activate the big toe, which already hurts 24/7. That was when the cursing happened. Fortunately I had warned her prior to the test not to take personally any cursing that happened, and she did not. In fact, she congratulated me at the end of the test for not cursing more than I did. Apparently she had taken my warning seriously. The experience was generally unpleasant and I hope never to do it again.
But it may have been worth it. She found clear evidence of chronic nerve damage in the nerve that emanates from the L5-S1 vertebrae. News flash - those are the vertebrae I had to have fused together surgically 9 years ago. She hypothesized I could have arthritis at the site of the surgery that is irritating the nerve and causing the entire chain reaction and suggested an epidural might provide some relief.
Wow. I am trying not to speculate too much before I meet with my doctor on Wednesday, but of course my head is swimming with questions and I have already done more Internet research than is probably advisable. Maybe I would have been better off without the sneak preview. I certainly hope the nerve damage turns out to be the cause and not just an interesting coincidence, but given my medical history I am not going to bet the farm on it. In any case, it is a new lead to follow and more concrete information than I've had in months. So I forgive yesterday's doctor for putting me through the nerve conduction study. I just hope she forgives me for cursing.
4/16/14: what a difference a good night's sleep can make. I spent most of yesterday in the 7-8 range, but I got to bed at an early hour (for me) and woke up this morning at a 6. While a pain level of 6 may not sound that great (and doesn't normally feel that great), in comparison with the previous day it was awesome.
I had a fairly normal day. Since I am going to be out of the office for the next three work days, I was quite busy tying up loose ends. After work, I went to PT, where I did the usual treadmill and exercise bike. My PT complimented me on my good attitude compared to other patients with similar issues and told me it would go a long way in aiding in my healing process. Gold star for me! I ended the day with choir rehearsal, our last one before Good Friday and Easter services. By the end of rehearsal, the pain level had started creeping up again, but all in all it was a pretty good day.
Tomorrow, in contrast, will not be a normal day, although I hope it will also be a good one. It starts with the nerve conduction study I mentioned yesterday, then a three hour drive to my parents' home to accompany them to Mom's oncologist appointment. It will be an important appointment, where we discuss her treatment strategy and schedule. (Many of you have asked for an update on her progress. She is recovering from her surgery like a champ and preparing for the next chapter in her own saga. Gold star for her, too! I came by my good attitude honestly.)
One more reason tomorrow won't be normal - I will meet my new niece for the first time! She is nearly six weeks old and she made her first visit to see my parents today, accompanied by my brother, his lovely wife and my two year old nephew. I'm looking forward to seeing them all and hearing about their travel adventure, which I can only imagine must have been interesting.
I should have lots to report the next time I check in. In the meantime, I'm hoping for another good night's sleep. Because I suspect I'm going to need it.
4/15/14: you may recall me saying that stress can aggravate RSD. Do you want to know what is stressful? Being awakened multiple times in the middle of the night by your home alarm going off (despite the fact that it was not turned on) because of a mechanical malfunction. And then being called by the alarm company each time it goes off to tell you that it is malfunctioning. Just in case the screeching, high-pitched siren didn't clue you in to that fact.
Fortunately, my patient, long-suffering husband had the presence of mind to disconnect the power supply. Because the next step was going to involve a hammer and a bill for new alarm equipment. As usual, my foot decided that as long as I was already awake, it might as well let me know that it was hurting. A lot. Not that it was complaining, of course. Just thought I would want to know.
I finally managed to get back to sleep and woke up in time to drag myself to my early morning doctor appointment. In retrospect, the haggard look on my face probably helped convey a sense of urgency to my doctor, so maybe the late night alarm episode was fortuitous. In any event, it was clear to him that I am nearing my wit's end.
As you know from previous posts, I have been calling this disorder RSD even though the more "modern" name is CRPS (Complex Regional Pain Syndrome). There are two types of CRPS: type 1, which used to be called RSD and is usually the result of an injury, and type 2, which used to be called causalgia and is usually the result of nerve damage. The vast majority of CRPS cases are type 1 and because I had a previous foot injury, my doctor started treating it like type 1, which tends to respond better to nerve blocks.
Since the nerve blocks did not work, he now suspects it may be type 2. There is a diagnostic test called a nerve conduction study that is used often to distinguish between types 1 and 2. (The test can also diagnose other potential nerve issues.) Another doctor in my doctor's office performs nerve conduction studies and she agreed to come in early Thursday morning before her other appointments to perform the test so I can get results as soon as possible. While it is not critical to get the diagnosis quickly in an medical sense, they know it is critical to me. I don't meet with my doctor until next Wednesday (due to my scheduling conflicts, not his) to officially discuss treatment options based on the results, but he said the doctor performing the test may be able to give me a sneak preview, or at least tell me whether the test indicated anything unusual.
I'll try not to get my hopes up for an early answer. At this point, I don't even know what I want the result of the test to be. While an answer would be nice, a diagnosis of type 2 CRPS is not exactly something to which I aspire. At least we're moving forward. I think this is the start of the next chapter in my little saga. I wish I could flip to the last page and see how it is going to end. Guess I'll have to read the whole book, though. And so will you.
4/14/14: whew! The last 48 hours have gone quickly. Sunday evening we hosted our Lenten group's season ending movie night. The movie we selected was Big Night, set at an Italian restaurant in 1950s New Jersey. So of course, my patient, long-suffering husband (and former professional chef) and I teamed up and spent Sunday afternoon cooking an Italian feast to accompany the movie. Other than the main course taking a little longer to cook than anticipated, all went well and I hope no one went home hungry, in either a literal or figurative sense. I enjoy getting together with our group each year and am always a little melancholy after the last meeting. Which is ironic now that I think about it - there probably aren't very many people who are sad when Lent is over.
If you've never seen Big Night, I highly recommend it. How does it relate to Lent? You'll have to join our group to get the answer to that burning question. Here's a little sneak preview to whet your appetite (in both a literal and figurative sense):
I followed our big night with a big day at work. Or at least a long day. My employer would not like me telling you what I did today, but I can tell you this much: it included 4 hours in a car, 3 hours on a single engine plane, an hour in a helicopter, and an hour on a speed boat. You know, just a typical day at the office. I made it home just in time for handbell practice. A lot of loud activities in one day. My ears may never stop ringing.
And speaking of activity, I have asked a lot of my foot in the last two days, and it has fared better than I expected. I've managed to stay in the 6-7 range both days, which is probably better than I deserve given my activity level. Back to the doctor tomorrow morning. While I don't expect to have a solution, I'm at least hoping to have a new game plan. Because the current plan won't work indefinitely. Maybe that's because it isn't really a plan. More of a trial and error exercise, with an emphasis on error. I have resisted making lifestyle changes in the hope that this is temporary. Some day, I may have to confront the possibility that it is not temporary, and that will not be a very good day. Today is not that day, though. Nor is tomorrow. So I will continue to have big nights and big days, because that's how I roll.
4/12/14: my last post was late, so this is the second post of the day. Which means it will be short. I spent a very pleasant Saturday with my patient, long-suffering husband. He played at a going away party for a local DJ who is moving to Europe. It was a beautiful, catered affair held on the grounds of the home of a supporter of the radio station and our music series. Any morning that begins with mimosas and a beautiful outdoor concert can't be bad.
The rest of the day was spent running errands and preparing for tomorrow evening's Lenten group dinner, which we are hosting. I wore sensible shoes and tried to take it slow, but I never really recovered from yesterday's fiasco. Hopeful for a better night's rest tonight and improvement tomorrow.
4/11/14: slept pretty well and woke up Friday morning in the 5.5-6 range. It was going to be a beautiful spring Friday. In addition to a relatively light work day, I had manicure and PT appointments, and we were having some friends over in the evening for a wine tasting. I was looking forward to a pretty fun day and my foot appeared to be cooperating.
I picked out a casual spring outfit that would get me through the work day and evening activities. Then it was time to make a decision on shoes. Since it has gotten warmer, I've quit wearing the cowboy boots to work and gone back to the prescription shoes I bought last summer. They are comfortable and fairly stylish, but I've already gotten tired of rotating the same two pairs of shoes all week. That won't surprise any of you who know me well. I am a collector of shoes. When we moved into our current home, my patient, long-suffering husband designed a wall in our closet with custom shelves for my shoe collection. I commissioned a painting of some of my favorite pairs, which hangs proudly in our powder room. Rotating between two pairs of work shoes for the next six months is not going to work for me.
So I scanned my collection for some alternatives and a pretty pair of platform sandals caught my eye. In the past, they have been one of my go-to pairs for comfort. With the platform heels, they feel like flats, and they are made of very soft leather with nubuck heels. When I slipped them on, they felt pretty good. Just the thing for a day like I had planned.
Or so I thought. By mid-morning, they were really starting to irritate my foot, although I convinced myself it wasn't any worse than my prescription shoes. Nevertheless, I resolved to go home and change shoes after my lunchtime appointments. I had my manicure (Taupe-less Beach from the OPI Brazil collection, in honor of the warm spring weather) and went to PT, where I rode the exercise bike for a full ten minutes and upped my treadmill speed to a whopping .8 mph. Then I went home and...did not change shoes before returning to work.
I kept the sandals on until about mid-way through the wine tasting Friday evening. I can't explain why, I just did. When I finally took them off, my foot was red and swollen and generally unhappy with me. I went to bed at an 8, hoping that a night's rest would resolve it. No such luck. I slept poorly and woke up early this morning, still in the 7.5-8 range. On evenings and weekends, I have a lot more options for appropriate footwear, and I'll be much more careful today.
I'd like to say I've learned my lesson, but I probably haven't. Within a day or two I will have convinced myself that the issue was not the shoes. Maybe I was just on my feet for too long, or ramping up the PT irritated my foot. In any event, this probably won't be the last post where I admit I made a poor shoe decision. But you have to admit, they are pretty cute sandals, right?
4/10/14: slept through my alarm for nearly two minutes this morning, which is huge. It's been a long time since I failed to wake up before my alarm, let alone sleeping through it. If I didn't have a big day at work, I would have rolled back over and tried to sleep some more. I was at about a 6 this morning, as usual. Mornings are always better than evenings. I guess having my foot elevated all night makes a difference.
While getting ready for work this morning, I thought of a dress I wanted to wear for Easter. I realized I had not seen it when making the big spring clothes shift in my closet last weekend. It must be in the dry cleaning pile. I'd better get it to the dry cleaners so I can get it back in time for Easter. So I searched the dry cleaning pile. No luck. Then I realized I was actually missing several spring dresses. And two sweaters. Uh, oh. Did I lose an entire order at the dry cleaners? I could not rest until I had unraveled the mystery of the missing clothes. Nancy Drew, eat your heart out.
A frantic search of the guest closet turned up no spring dresses, but I did find the two sweaters. Back to our closet, where I noticed my patient, long-suffering husband had a lot of dry cleaning bags on his side. Score! I found most of the spring dresses, as well as a suit, several pairs of Capri pants, and a few skirts I had purchased late last summer and didn't even realize were missing. The only thing I didn't find was the original dress I wanted to wear for Easter. Bummer.
At this point, I realized I'd better dress for work if I had any hope of being on time. The detective work would have to wait. So I turned back to my side of the closet to pick out some work clothes. And found the dress that started the whole hide and go seek episode, exactly where it should be. I was slightly annoyed by the whole exercise, until I realized I had just gained about 8 spring outfits and now had a clothing plan for Easter. Just like shopping, only better, because it didn't cost anything. And I still made it to work on time.
The rest of the day was good and I had a lovely dinner outside on a deck with my patient, long-suffering husband and his family. I love spring. My foot is pretty unhappy tonight, as usual, but the rest of me is happy. And as of tonight, I can account for all my clothes. If only the mystery of RSD were as easy to resolve...
4/9/14: the yoga didn't seem to make my foot worse today. I woke up in the 5.5-6 range and went to physical therapy. My PT gave me the go ahead to continue yoga to the extent I can tolerate it, and he stressed that I needed to make that decision on a day-to-day basis. And as I suspected, he had a good pep talk ready for me. (I'm beginning to wonder if he is secretly reading my blog.)
The first thing he did was tell me not to get down about the nerve blocks not working. He opined that the nerve blocks were still useful as a diagnostic tool and the fact that I didn't get any relief just indicated that the nerves themselves were not the part of my nervous system sending the rogue pain signals to my brain. I don't know if my doctor will agree, but it certainly sounded plausible and made me feel better.
He also talked more about finding the right level of activity - enough to distract my brain from the pain, but not so much that it aggravates the pain. For instance, he started me on the treadmill at a speedy...1 mph. Yes, you read that correctly. After a few minutes, he asked me if it felt any better and I said it wasn't better, but it wasn't any worse than when I was sitting a few minutes earlier. Wrong answer. He slowed it down to .7 mph. (I wasn't sure a treadmill could even be set that low.) He said if he does his job correctly and finds the right level of activity, I should actually feel better when I am doing the exercises than when I am not moving. And he was right. I'm not going to win any races at .7 mph, but it did feel better at that speed.
He then shamed me into resting a few times during the treadmill exercise. Apparently he has me figured out pretty well, because he said he could tell by looking at me that I felt guilty about stopping to rest. He reminded me (once again) that I was working to my body's current capacity and that I was not doing myself any favors by trying to exceed my limits. He may be getting tired of reminding me, but he's certainly being a good sport about it.
In addition to the treadmill, I spent 8 minutes on the exercise bike (at a speed so low it did not even trigger the automatic start) and did mirror therapy. Now that I am back on a regular PT schedule, maybe I will start to see some improvement. Hope springs eternal.
My speed was not any better in the car today than it was on the treadmill or exercise bike. Due to some sort of utility work, the road between work and home was nearly at a standstill this afternoon. I'm no math genius, but 39 minutes to drive 3.2 miles doesn't seem like a very good average to me. Apparently I was not destined to get anywhere fast today. Another lesson in patience.
As a little reward for playing along with me every day, here is the long-promised picture of me in the harness on the treadmill today. If you squint just right, it looks like I'm moving faster than .7 mph. At least, I hope it does.
4/8/14: slept better last night and woke up at a 6. My foot appears to be back to normal. And by "normal", I mean pre-nerve block normal. The tingling is mostly gone, so it's just the usual RSD pain, which is actually a bit of a relief.
My employer recently started up free lunchtime yoga classes again after a long hiatus. While I wasn't really sure if yoga is a sanctioned activity right now, I've missed it and I woke up this morning thinking about it, so I decided to give it a try. Another attempt at living my normal life. I promised myself (and my patient, long-suffering husband) that I would take it easy.
How did my foot feel doing yoga? Terrible. But frankly, not that much more terrible than sitting at my desk for the rest of the day felt. How my foot feels tomorrow after doing yoga today will be the real test, I think. I go back to physical therapy tomorrow morning. I intend to 'fess up about my yoga experiment and if my PT advises against it, I will comply. And if my foot feels much worse tomorrow, I won't go back. But I certainly enjoyed it and it did wonders for the rest of my body, not to mention my attitude, so I hope I can continue. As do all the people who have to live and work with me. As do all of you who are patiently listening to me complain day after day in this blog.
In other good news, the weather has gotten sunny and beautiful again and I ate dinner outside, one of my favorite things to do. Maybe this week will be okay after all. Namaste, y'all.
4/7/14: not much sleep last night, but I can't blame it totally on my foot. My patient, long-suffering husband got home very late from a rare Sunday night out-of-town gig. What do you get when you cross a gigging musician and an attorney? About five hours of sleep. (Good one, huh? I'm here all week...) The last thing I wanted to do when I woke up this morning was go to work, but I am determined to have as normal a week as possible, so I went.
Fortunately, it was a busy day at work and it went quickly. I also made it through handbell practice. Normal Monday? Check. Except for my angry, screaming foot. I've officially passed the 72 hour mark with no relief. I'm ready to start using pain level numbers again, and it feels like about an 8 right now. And thus ends the Great Nerve Block Experiment.
My next doctor appointment is a week from tomorrow and I guess we'll talk about plan C. I have a busy schedule between now and then and I don't intend to miss anything if I can help it. Maybe a return to physical therapy on Wednesday will help calm my foot down. I hope my PT is rehearsing his pep talk, because I'm a little short on patience at the moment.
4/6/14: slept amazingly well last night despite my foot feeling miserable when I went to bed and when I woke up. (I've given up trying to use the pain level system for the time being. It's a little too complicated with the addition of the tingling sensation.) The second day after the nerve block is always the day I regret having had it, and today was no exception.
I tried to take it easy most of the day, but by mid-afternoon, my inner organizational demon got the best of me and I sprung into action. When it was time to leave for my weekly Lenten group evening get-together, I had reorganized the linen closet, finished the laundry, ironed about three months' worth of clothes, and moved all my spring and summer clothes into my closet from their winter hiding place. I don't know if all the activity was a good idea or not, but it kept my mind occupied and made the time go more quickly. It also convinced me that I was in good enough shape to drive and interact with other humans.
I may be too easily convinced. I had a great meal and enjoyed the discussion with the Lenten group, but I still didn't feel like myself. Maybe the effects of the sedation hadn't quite worn off. Maybe I was just a little off after a quiet weekend. Or maybe I'm just sick and tired of nerve blocks and cold, rainy days. (The weather has been cool and rainy since yesterday evening, which hasn't helped my foot or my attitude.) My post-procedure instructions said it could take up to 72 hours to feel the effects, so I'll give it another day before I admit defeat on the nerve block, but it's not looking too promising for the good guys right now.
Tomorrow is supposed to be warmer and sunny. Sounds like a good day for a breakthrough. In any event, at least it sounds like a good day to wear freshly ironed spring clothes. Which I just happen to have handy.
4/5/14: didn't sleep as long as I would have liked, but I slept well when I was sleeping, so...yippee! I was groggy through the entire day. My foot is really tingling and buzzing, with periodic pain - kind of what I expected and nothing unbearable.
For insurance-related reasons, yesterday's nerve block took place in a surgical center (aka tiny hospital) rather than in my doctor's office. As a result, it felt a little more serious. There was a lot more paperwork, a lot more monitoring before and after the procedure, and a lot more post-procedure instructions. Not to mention a lot of additional fees, which made me hope even more that this is the last one.
I had a very low-key day. I did a little vacation planning and a friend took me to lunch. As long as I am concentrating on something, I am pretty lucid. But if I get distracted for a moment, I start feeling spaced out again. My post-procedure instructions included not making any "important or legally binding" decisions for a day or so. I guess that hostile takeover bid will have to wait another day. It was hard enough reading the menu at lunch. I'll have one more day to rest before what I'm hoping is a fairly normal week. No travel or medical procedures planned, other than a return to PT after a nearly four-week hiatus.
If this nerve block works like I hope it will, I can kick into a higher gear at PT (and in my life), which was the purpose of the series of nerve blocks. It's time. It's spring and there are bicycles to be ridden. Trails to be walked. Wildflowers to be viewed. Vacations to be taken. (And swimsuits to be worn.) I have a lot of things on my to-do list, but sitting around the house is not one of them. Fingers crossed...
4/4/14: sorry I've gotten behind on posting again. I'm still playing catch up and the last few days have been a whirlwind of activity.
My brief business trip was not as brief as I intended and I ended up staying an extra day. It was worth it, as I got some important things accomplished. But note to self: always pack one more pair of clothes than you think you will need. (I know, you are shocked that packing additional clothes is not part of this prepared girl's routine. However, my packing philosophy is an exception: pack as light and economically as possible for ease of travel. I don't always succeed, but my ideal packing job involves coming home with every single thing in my bag dirty, which means I didn't bring anything that was unnecessary.) Fortunately, I was meeting with a group of people who generally wear uniforms every day and therefore did not appear to notice that I wore the same suit two days in a row.
The last time I posted, I was optimistic that things were turning around after the most recent nerve block. Unfortunately, the improvement didn't continue like I'd hoped and the balance started to turn back to the usual pain. Advantage: evil. The second night of my business trip was pretty rough and I saw 8 and then 8.5 for the first time in awhile. It eased up enough yesterday for me to competently conduct my business and make it back home.
This morning I woke up closer to a 7 with my foot a little discolored and swollen, again for the first time in awhile. I put in a morning at the office and then went for my fourth nerve block. It had been postponed from yesterday to today, which means my patient, long-suffering husband was out of town rehearsing for a gig and missed out on one of his favorite activities: sitting in the waiting room while I have the nerve block. A very sweet friend acted as a last-minute stand-in and made sure I got home and in bed safely afterward. I think she deserves one of my now-famous fried egg sandwiches. (She deserves more than that, but it's a start.)
I took my standard post-nerve block nap and am now resting as the fog slowly lifts. I feel like I'm lucid enough to write a coherent post, but I'll let you be the judge of that. (Friends don't let friends post while under the influence of sedatives.) I hope this will be the last nerve block for awhile. Either it will be the one that tips the scales in favor of good over evil, in which case I won't need another one, or it won't, in which case I don't want another one.
In fact, I boldly declared as much (in much more emphatic terms) this morning to my patient, long-suffering husband, who tactfully suggested that perhaps this should be a decision I make in consultation with my doctor. He and Dad are probably ready to form a support group for spouses of stubborn, self-diagnosing and self-treating women. (While Mom and I prefer to think of ourselves as endearingly determined and self-reliant, we are willing to concede that we might sometimes benefit from the advice of competent medical professionals who have dedicated their lives to health care. The first step on the road to recovery, you know...)
It is way too early to know whether this nerve block will be "the one", so in the meantime, I will settle in for what I hope will be a restful weekend. I promise to do a better job of checking in the next few days. I'll leave you with a clip from a movie I have referenced in previous posts that does a pretty good job of summing up where I hope this is leading.
Spoiler alert - pause the clip at the 15 second mark if:
a. you have "Stand Up Guys" on your Netflix list, because the last few seconds give away a fairly major plot point, or
b. you object to seeing a bad guy get shot in a fairly quick but graphic manner.
Ed. note - if you can't see the video, it is probably because you are on a smartphone or device that doesn't have flash player. I will refrain from any incendiary comments regarding the major provider of smartphones and tablets that has determined individuals do not need flash player.
