4/18/16. The post where I make a fascinating discovery.

4/18/16: wow, I didn't realize how long it's been since I've posted. I guess time flies when you are having fun.  And I have been having fun.  Except for the last two weeks, which have been decidedly not fun.

I've been sick. I mean really sick - eight prescriptions, no work, emergency room kind of sick.  The "official" diagnosis? Some kind of insidious respiratory virus resulting in "haze" on one of my lungs. Not pneumonia, not bronchitis.  (Also not a heart attack. How I know that is a story for another blog...)  Just lots of coughing, sore throat, chest pain, and fatigue. With the help of friends, family, and my patient, long-suffering husband, I've been able to rest and am finally starting to feel better.  

It has also rained quite a bit, and my foot has tried to fight for attention. But it's been fighting a losing battle for the most part.  With the exception of one fascinating discovery I've made.

As part of his nursing duties, my patient, long-suffering husband has been making me soup.  In most homes, when you are sick, you get chicken noodle soup.  But as you know, my home is different, and in my home when you are sick, you get Thai hot and sour shrimp soup. It is spicy, delicious, and great for opening your sinuses.  Guess what else it does?  Causes an RSD flare up.  Seriously.

I've had the soup three times in the last two weeks and had a flare up each time.  The first time, I attributed it to standing up for too long helping prepare dinner.  The second time, I attributed it to the incoming storms.  Tonight, I had to admit it was the soup.  I don't know if it is a specific ingredient in the soup, or the general heat of the soup, but my foot immediately turned red, shiny, and swollen, and the pain level ratcheted up multiple levels. The good news? It didn't last long.  Within an hour, it had calmed down quite a bit.

I've read quite a few articles about how diet affects RSD and it usually boils down to eating an anti-inflammatory diet.  I'm not aware of any inflammatory ingredient in the soup - in fact, it should be just what the doctor ordered.  But experience tells me otherwise.  This doesn't mean I will stop eating it.  I guess I am just stubborn that way.  It is delicious and the flare up never lasts long. And did I mention it is helping with my virus?  The flare up is a small price to pay.

2/22/16. The post where I talk about the new normal. And purses.

2/22/16: a little backstory about myself.  While my love of shoes is well known throughout the kingdom, that love does not extend to purses.  I see purses as a necessary evil - a way to drag my stuff from point A to point B. (And as you may recall from previous posts, I drag a lot of stuff from point A to point B.)  It pains me to spend money on them, so generally you will see me carrying whatever pleather or vinyl bag came as a free reward with my shoe purchase or was on the best sale at the local outlet mall.  

My Christmas gift from my parents-by-love changed all that. For the first time in my life, I am carrying a real, grownup purse.  One I actually fear might get stolen. Not for what is in it, but for the purse itself.  Fortunately for me, it is monogrammed, so only someone with my initials would steal it.  Why am I telling you this, you ask? Well, keep reading...it will make sense at some point.  I hope.

Now, back to my foot.  I feel like I have settled into my new normal over the last few months.  In terms of pain scale numbers, I'd say I spend about 85% of my time at a 2-3, 10% at a 4-6, and 5% at something greater than a 6.  If you had told me two years ago I would be feeling this great, I would not have believed you.  (Of course, if you had told me five years ago I would consider this "great", I also would not have believed you.)  The only real issue recently has been the alarming frequency with which HAL seems to turn itself off these days. After a few days in a row of mysterious shutdowns, I decided to do something about it.  

I contacted my assigned technician and she was stumped, so she referred me to the people who handle "tech support" for my device.  (Yes, I officially have "tech support" people.) The person on the phone listened to my story, did a little research while I was on hold, and then started troubleshooting.  Do I have a mechanical bed? Nope.  Have I bought any new appliances or electronics recently that might be interfering? Nope.  Have I been carrying around the magnet that was provided to turn off the device when the programmer isn't working or available?  Nope.  Have I started spending a lot of time in a new location that might have a magnetic security system?  Nope.  He was just about out of ideas, and we were starting to discuss the possibility that too much scar tissue had built up on the lead wires and was shorting out the device. (Sort of the equivalent of corroded battery cables, except that a surgical procedure would be required in this case. Not something that is covered by AAA.)  Then he thought of one more possibility. Do I have a purse with a magnetic closure? Nope...I mean, yes. My fancy new purse does in fact have a magnetic closure. A pretty heavy-duty one, now that I think about it. I got off the phone and did a little experiment. And yes, I can turn HAL on and off using the magnet on my purse.  Mystery solved.  In the interest of full disclosure, it happened a few times before I got the purse, but it has certainly been much more frequent since I started carrying it.

So I've learned a few lessons.  I need to be a lot more careful around magnets.  I need to always carry my new purse on my left side. And in the future, no purses with magnets.  Maybe those free pleather bags weren't so bad after all...

2/14/16. The post where I talk about smells.

2/14/16: wow, it's been awhile since I've posted.  It's not that I haven't had anything to say, it's that I haven't had any time to say it.  Work, family, and friends have kept me hopping recently, and for that, I am grateful.  Sometimes I think back to the advice my PT used to give me about "consistently moderate" activity.  I am a pro at the "consistent" part.  It's the "moderate" part I need to work on.  My right foot has largely behaved this winter, although HAL has been turning itself off with increasing regularity in the last month.  Magnets can turn the stimulator on and off, and with all the magnetic doors, security systems, and other devices out in public these days, it looks like I will have to monitor it more carefully. The nerve blocks I had last May for my left foot have lasted quite awhile. I am starting to notice an increase in the frequency of the nerve pain in my left foot, but the duration is still very short when it happens.  I have convinced myself I am two bad days away from scheduling another round.  Here's hoping that won't be any time in the near future.

Right now I am more concerned with allergies and upper respiratory infections. I'm working on the second infection in about two and a half months.  The weather has been beautiful recently, but where I live, "beautiful" usually translates to "allergen-filled."  And I can't help myself. I love to eat outdoors and drive around with the convertible top down in this weather, even though I know the consequences.    

It could be worse, though.  Until about six years ago, I spent every winter in a fog of sinus infections, bronchitis, and pleurisy.  Yes, people still get pleurisy.  At least, this person does.  Then I had surgery to repair a deviated septum and several other related nasal issues. Probably the result of too many foul-tips to the face from my days as a catcher.  From the moment the splints were removed from my nose (and trust me, you don't want any additional details about that), I have had a superhuman sense of smell.  Which, as it turns out, is not always a desirable superpower.

For instance, on my morning walks. I live on the edge of a neighborhood and a commercial district, so my morning walk is always an interesting mix of sights.  And smells.  On my last walk, I encountered the following smells:

- dryer sheets from a home on my route that was already doing laundry at 6am.  Not sure exactly what the scent was called, but probably something like "spring lavender mist with a hint of citrus".

- a clean-cut college student with a book bag waiting at the bus stop who smelled of...no, "reeked" of is the proper term...pot. Mary Jane. Weed. Maui Wowie. He wasn't smoking anything when I saw him, but based on the smell I'm guessing he had been smoking within five minutes of our encounter.  Have I mentioned that it was 6am? 

- fresh baked doughnuts from the grocery store down the street.  You'd think that would have been the highlight of the morning, but it was more a combination of doughnuts and the grease in which they were fried.  Enough to make me swear off doughnuts for awhile.  And last, but not least,

- gasoline, from the tanker that was refilling the pumps at the gas station on the corner.  Good thing the pot-smoking college kid wasn't nearby, or there might have been an explosion. 

On second thought, I may not have an upper respiratory infection at all. My nose may just be rebelling against the olfactory assault it endured on my last walk. I don't blame it at all. Frankly, I'm a little relieved not to smell anything for a few days.

11/24/15. The post where I win.

11/24/15: my foot and I have had an uneasy truce for the last couple of weeks.  It has been daring me to give it a reason to act out, but so far I haven't taken the bait.  Other than a few brief flare ups due to weather changes, I have felt surprisingly well.  But the holidays are coming and I am switching into full-on action figure mode. Which never goes over well.

This Thanksgiving is a special one. For the first time in our relationship, my patient, long-suffering husband and I do not have a three day music festival to produce the week after Thanksgiving.  Which means we can actually celebrate, instead of racing to a family member's home, scarfing down a meal, and racing back to work.  So this year we are hosting a dinner.  A small dinner.  I'm talking small. http://youtu.be/YYtTb23PIAs  

But even a small Thanksgiving dinner requires a large trip to the grocery store and a lot of space in the fridge.  And neither one of us was looking forward to cleaning out the fridge or braving the crowds at the store, so we had already put off both tasks several times.  Unfortunately for me, my patient, long-suffering husband thought more quickly than I did.  As I walked in the door after work, he met me with the news that he had already cleaned out the fridge.  And reminded me that he had a meeting tonight.  So, maybe I could do the grocery shopping? Well, crap.  

I finished putting together the list, had a little liquid courage, and steeled myself for the crush of humanity at the store.  I knew I would have a long walk in from the parking lot and then a long trip through the store, so I put on a comfortable pair of shoes.  Then I got in the car and drove to the store, where I found...a ghost town.  Seriously.  The parking lot was nearly empty and I pulled into the spot closest to the door.  I checked my phone to make sure I hadn't missed the end of the world.  I walked in and sped down the aisles, exchanging furtive glances with the few other shoppers in the store who also could not believe their good fortune.  I went to the checkout, where nearly every lane was empty and the bored cashiers were practically begging me to pick them.  Best.  Shopping trip.  Ever.  Within 45 minutes, I was back home and all the groceries were in the freshly cleaned fridge.  While part of me wanted to keep my patient, long-suffering husband in the dark about my lucky evening, the urge to gloat overcame me.  Looks like I won this round of the Thanksgiving chore wars.

It wasn't a total win.  Even with my unbelievably short trip, I came home with a foot that was red, swollen, and generally unhappy.  My foot hates grocery stores.  After thirty minutes of rest, though, it bounced back pretty well.  Considering the fact that I expected to still be at the grocery store at that time, it still felt like a win.  Here's hoping my luck continues for the rest of the holiday week.

11/12/15. The post where I'm not a super hero...or am I?

11/12/15: after my flare up last week, I gradually improved over several days and I've managed to keep a delicate balance for the last few days.  I can feel it chasing me, but so far I've stayed one step ahead of it.  It's an important week at work and at home and I don't have time for any RSD foolishness.

After a long day at work for both of us, my patient, long-suffering husband and I cooked a delicious, healthy dinner together.  That hasn't happened in...well, in way too long.  And we really enjoyed it.  But by the time we finished, my foot was ready to call it a day, so I settled in on the couch and we watched a movie. What movie, you ask? Avengers: Age of Ultron.   I know, at least half of you are saying, "You know that movie came out six months ago, right?"  But for us, seeing a movie within six months of its release date is a speed record.

As I watched them defy death countless times and save the planet yet again, I felt a little lame sitting on the couch with my foot propped up on pillows.  I don't think I'll be answering any super hero want ads any time soon.  But as I thought back on my week, I felt a little better.  I don't think anyone would have faulted me for lying around all week feeling sorry for myself.  But I didn't. Did I kill a bunch of bad guys?  No.  Did I perform any death-defying stunts?  No.  Did I save the planet from imminent annihilation?  No.  But in my own small way, I made the world a better place.  I completed a major accomplishment this week at work that will help a lot of people, although most of them will never know about it.  And, did I mention I also did a lot of work at home for a big concert tomorrow night?  And I've done all these things with HAL set to 11.  Maybe I'll check the super hero want ads after all.  Although I've never looked good in Lycra...

11/5/15. The post where a day with a flare up can still be a great day.

11/5/15: I've been hanging on all week, feeling like I was on the verge of a big flare up, but never quite there. Until this morning.  I woke up before the alarm went off to heavy rain and burning feet. Yes, feet. Plural. Looks like the nerve blocks in my left foot may have played out.  They were great while they lasted.

I gave myself the usual pep talk and got up to get ready. But after about twenty minutes, it was clear that it was going to take more than a pep talk today.  I checked my work calendar and - hallelujah - no pressing meetings or other tasks I couldn't take care of from home.  So, it was back into bed for awhile until I could muster up the fortitude to walk downstairs and fling myself onto the couch for the day.  I was actually fairly productive.  It's amazing what you can accomplish with wifi and a laptop.  And a patient, long-suffering husband who doesn't mind playing nurse and chef.

But before you start thinking it was a bad day, let me tell you the good news.  Mom got the results today from her most recent body scan.  The one remaining tumor continues to shrink, a residual effect of the recent radiation.  And more importantly, no new spots!  So, not only was it a great day, the upcoming holidays are going to be great as well.  

And speaking of "holidays", you may not have heard, but this month is CRPS/RSD awareness month.  (I'm certainly keenly aware of it right now.)  It is being called "Nervember" on some social media, which I find hysterical in my current addled state.  Happy Nervember, y'all! 

11/1/15. The post where it catches up with me.

11/1/15: if I told you all the things I've done since my last post without a major flare up, you wouldn't believe me.  But I'm going to tell you anyway. I've survived two business trips.  Hours of driving in the rain. Hours of flying in the rain.  Hours of sitting on a tarmac in the rain.  Miles and miles of walking.  Thirty degree temperature swings.  Three major storm fronts.  And through it all, HAL has been humming away and my foot has felt remarkably good. Nothing over a 5, even when I had to turn off HAL to go through airport security, and more often in the 2-3 range.  Yesterday, I felt good enough to walk a charity 5K and go to a costume party.  I was feeling invincible.

Well, it turns out I am vincible.  I woke up early this morning feeling like there was a knife sticking out of my foot.  (Maybe it was the power of suggestion. After all, on Halloween I saw lots of people with knives sticking out of various body parts.)  Surprisingly, my foot color looks perfectly normal.  But recently, I've discovered another method for convincing myself I am not imagining things when I have a flare up.  You probably don't keep up with the symptoms of RSD, but I do, and one of them is fluctuations in body temperature at the affected area.  Recently, my patient, long-suffering husband bought an infrared temperature gun for measuring specific spots in the oven while baking. But guess what it can also measure?  The temperature of specific spots on your body.  And this morning, as I suspected, the temperature of my right foot at the exact point the "knife" is sticking out is more than three degrees colder than the same spot on my left foot and the rest of my body.  While fascinating from an intellectual perspective and satisfying from a mental health perspective, it doesn't make the knife go away.

Fortunately, today is a pretty easy day.  Singing in church, making a dish for the neighborhood block party, attending the neighborhood block party, rehearsing with my scene partner for acting class.  I've got this.  As long as my character in the scene has a knife sticking out of her foot.  

p.s.  Tomorrow (November 2) is Color The World Orange Day, a day for raising awareness about CRPS/RSD.  Various cities, states, and even countries are planning awareness activities, local landmarks will be lit orange, and people are encouraged to wear orange.  Yeah, I know, you just wore orange for Halloween and orange is not your best color.  It's not my best color, either.  But I'm willing to make a fashion sacrifice if it raises awareness and helps in any way to find a cure.  Because pain is also not my best color.