Chillingly hot

I said in my last post it seemed summer might be coming to an end.  Well lately it seems like it.  It's been cold here at night and hot during the day.  This week we were in the 50s (F) every night but today, for example, it was in the mid 90s during the day.

These dynamic temperatures make it hard to determine how to dress in the morning.  Do I dress for the 50 degrees outside when I leave the house, or the 90 degree when I leave work?  It's nearly impossible to decide.  I usually opt for dressing to the heat and wrapping a blanket around my ankle when I'm in the office.

On top of the weather there's been a bit of stress in my life the lat few days.  Swimming last night helped me release some of the stress, but my ankle is still bothering me a bit.  I'm trying to relax right now (I'm sitting back with a glass of Pinot Noir and watching my favorite movie- The Princess Bride).  Hopefully after a good night's rest my ankle will be more cooperative.

Summer's almost over

Pardon me while I pour one out for summer.  I love you, summer.  I loved you more when I was young and had vacation when you were around, but I still love you as an adult.  You just don't bring me the unexplainable joy of being completely lazy for two and a half months anymore.

I being up the impending end of summer because as summer comes to a close the weather begins to cool.  However, my office doesn't turn off their air conditioning for months.  It was 50 degrees F the other morning and my office was freezing.  I'm so glad I have a space heater that I can put right behind my chair and a blanket to wrap around my leg.  I also brought soup to help keep me warm.  The next day it was warm again in the morning.

As much as I'll miss summer until next year I'm excited for Autumn.  I love the fall.  Unlike the summer, I love you more as time passes.  When I was younger you signified the end of laziness and the beginning of classes again.  Now you mostly stand for all the fun things I loved about you as a kid.  The leaves turn beautiful colors, the apples are ready for picking, the haunted hay rides start, and of course there's the beer festivals in my area.  All of that means walking.  It's almost walking season again.

I think it might be helping

I really do think swimming might be helping my ankle.  Don't get me wrong, I'm still in pain, but I find the smallest things aren't exacerbating it as much.

I got the idea that I needed to start working my ankle out more when my husband told me about his friend who has CRPS.  She plays guitar to help stave off the symptoms (and oh boy can she play guitar!), and it really seems to work for her.  I decided I had to start doing something and see if that made a difference in my pain levels.

But what?  I always liked to run, and that's definitely out.  There's working out and then there's being downright dumb and in my case, running would be downright dumb.  That's when the cards fell into place and my swimming buddy asked me to start swimming with her.  I had been on the varsity team in high school, despite suffering from undiagnosed CRPS, so why can't I swim now that I have my SCS?

I'm so grateful everything came together like this.  Swimming makes me feel better in so many ways.

I forgot to turn on my stimulator!

And boy did it make a difference.  We went swimming last night.  At first I could tell something was off but I wasn't sure what.  It wasn't until about 15 minutes in that I noticed I didn't feel that comforting buzzing in my back and legs.

Within minutes I couldn't kick with my right leg anymore and even dragging it behind my body, water rushing by, was very painful.  I knew then I was doomed.

HOW COULD I FORGET?!?  I need the stimulation to carry on even close to a normal life.  It should be second nature to me by now, but of course it's not.

I ended up swimming for only 40 minutes or so and then I had to get out.  It hurt too much and I was beginning to see some swelling.  My very understanding friend understood why I had to leave, and I got out, took some Aleve and headed home.  I could barely even stand in the shower.

The pain has started to calm now.  I'm looking forward to swimming again tonight.  I do think it helps with the strength and the pain related to the CRPS.

Swimming again!

I'm going swimming tonight.  NO EXCUSES!  But let me tell you something.  My leg hurts.  I'm not sure what it is.  I was sitting at my desk today when all of a sudden it started hurting a lot more than it has since I got the stimulator.  I did everything I could think to do to get it to stop but nothing helped.  I'm hoping getting into the water tonight will help.

Hopefully there aren't too many people there tonight.  I think that might be part of the reason it hurts. I had to kick my legs a lot harder lats night to keep myself going in a straight line last night because of all the people, which means there was more pressure on my ankle.  Hopefully some Aleve and a nice slow night will do the trick.  If not I'll have to bow out early.

I was going to wear one of my dresses today, which would have meant heels.  I'm glad now I opted out of it and them.  I was also supposed to work on the wine I'm making with my family.  Thankfully it's not quite ready for the next step yet.  Things worked out pretty well for me today.  Hopefully by the time the wine is ready my ankle will be feeling better and will be able to stand as long as I'm needed.

Working out

I've been on a search for a workout regime that worked with my RSD.  I have to admit this has been rather difficult for me.  I was looking for something low impact that I could do at home, and that wouldn't hurt either my leg or my back (because of the SCS).

I'm happy to report  I had simply been looking in all the wrong places.  I didn't need something I could do at home, on account of my laziness.  What I needed was a friend to push me to go work out with her, and who I would do the same for.  Said friend and I have started swimming together.  It's been years since I've been in the pool for anything other than fun, so this required a little pushing.

We've only swam together twice so far (yesterday and the day before), but I already feel better about myself!  We're going swimming again tonight and I can't wait.  There might be something wrong with me.  I might be sick.  I can't ever remember being excited to exercise.  What is going on up in that head of mine?  I don't know, but I'll take it.

My husband suggested I come up with a goal to help keep myself on track and we decided a good goal was to swim 1,600 miles (the shortest distance across the Atlantic Ocean).  If you want to track my progress check out the link to my other blog above.

So how does swimming affect the RSD?  It certainly does have en effect.  If I kick too hard my leg is in a lot of pain afterward, but the great thing about swimming is that when I feel like I'm overdoing it I can stop kicking altogether and just pull with my arms.  After a few days my leg hurts no more than  I did before starting swimming.

Okay I'll stop now.  Like I said I'm way too excited about exercise.

On the other hand, I bought some new clothes this past weekend and wore high heels for the first time in.... oh... almost ever.  That is not so good for the ankle.  I'll have to keep heel wearing to a minimum.

I'm back from Boston!

What a trip!  We had a blast.  The husband was kind enough to drive most of the way to the hotel.  It really gave my ankle a rest, which was much needed.  The hotel we stayed in was unique.  It was basically a really old house.  It had a lot of character.

Thankfully the weather while we were there was near perfect.  The pollen was flying like crazy, it was a little over 70 degrees and sunny the first 2 days.  The day we left it rained, but not hard enough that it made our trip home difficult.  It was perfect driving weather.  We decided since it was so nice the second day we were there we would walk down to get lunch.  It wasn't far from our hotel and the area we were staying in was so beautiful.  Since my ankle was already acting up before we left, the walk didn't help.  We got back to the hotel after lunch and I took some Aleve.

That night we went to the beer festival.  Our cab driver on the way there was a trip.  He got lost, and I'm pretty sure he had some medical problem, on account of his constant fidgeting and pulling at his bum.  He got us there a bit late but that worked out fine for us.

We walked around the festival for a few hours, sampling beer and just generally having a good time.  We met some fun people and had some delicious beer so the night turned out to be just what we were hoping for.

Then we made our way back to the hotel.  The cab driver on our way back didn't have nearly as much... character... as the first cab driver, but I think that's alright.  He got us back to the hotel really quickly and was very friendly.  I took some more Aleve the minute we got back to the hotel.

I didn't get much sleep that night, partly because of the alcohol and partly because of the pain in my ankle, so the next morning I took more Aleve and we headed out for brunch with some of my friends.  Then we made our way back home, and once again the husband did most of the driving (how did I get so lucky?).

It truly was an excellent trip.  A few days later, my ankle still hurts but I wouldn't trade it for the trip for one second.  Some great memories were made that weekend.

On an interesting unrelated note, I recently found out someone else from my tiny town has RSD.  For the number of people in our town, this is quite the coincidence.  I have yet to meet her but I have to say I can't wait.  My husband met her a few weeks ago and from everything he tells me about her I can tell already I'm really going to like her.

Vacation!

I'm on vacation!  It feels so nice :)  The husband and I are heading out to Boston for a Beer Festival.  It should be a lot of fun.  I'm really excited.  There's going to be a lot of walking involved, and my ankle is already in a lot of pain because I did a lot of walking last week, but I think it'll be worth it.  I may have to have him drive most of the way there though.

Last weekend the husband was working a few streets over.  I decided to surprise him with a picnic lunch.  I packed up the picnic basket turned my simulator up and started walking.  A while later I discovered we did not properly communicate the location to each other.  I had no way to reach him so I walked back home.  The ankle has been bothering me ever since.  It's allergy season so I've been taking antihistamines lately so I've been trying to avoid the pain killers.  I'll have to make sure they're packed for the trip tomorrow.  I plan to do a lot of walking over the few days we're in Boston.

I've been fixed!

The stimulation from my SCS is kind of a weird sensation.  The only way I know how to describe it is that it's kind of like being electrocuted but it doesn't hurt.  It's hard to imagine missing that sensation but I have to admit I did.

I met with the rep from the company that made my stimulator yesterday.  She set up my new programmer so I'm back to having stimulation.  She also noticed a problem with the wand attached to my programmer.  She put in an order for a replacement and that arrived today.  I'm all fixed up!

The minute I was able to alter the sensations and strength I felt like a had a long lost friend back.  I missed you, old friend.  You're back just in time.  The weather has been playing games again, as it tends to do in the Spring around this area.  It was almost 90 degrees F a couple of days ago and I woke up to 32 degrees F this morning.  They're calling for rain over the nest couple of days.

The pain levels aren't yet back down to where they had been before, but it's getting there.  Just a few days more.  I'm excited to get acquainted with my newly adjusted programs.

Stockings are the devil

The husband and I were recently invited to attend a ceremony, for which we would be required to dress up a bit.  We agreed.  The day came and it was chilly outside.  It was maybe 40 degrees Fahrenheit (that's about 4-5 degrees Celsius for the foreign readers).  I had to wear a skirt, but I don't dress up very often so I didn't have any stockings to wear.

I called my mom, who has always had an abundance of stockings, to see if she could lend me a pair. She agreed and off we headed to pick them up.  I decided to try them on there, and it's a good thing I did.  I pulled the right leg of the stockings over my right ankle and all of a sudden the pain was so bad I could barely fight back tears.

What had happened here?  I'd worn stockings as recently as a few months ago without a problem?  I assumed it was because my mom is much more petite than I am and I asked my sister if I could borrow a pair of hers instead.  Same result.  I got the stocking jut over my ankle before the pain became so bad I had no choice but to immediately remove them.

I couldn't understand what was going on.

I decided I wasn't wearing stockings.  That seemed the only solution.  I opened the door to leave and discovered that was not a solution at all.  As soon as the cold air hit my leg I was in even more pain than I had been with those devilish stockings on.

I asked my mom if he had anything else I could wear on my legs.  She asked why and I explained the conundrum. It was either severe pain from wearing stockings or severe pain from not wearing stockings.  there was no winning solution.

That's when I got my answer.  My mom had purchased stockings that are meant to "grip" your legs tightly, constricting the blood vessels.  Well, there you have it!  I can barely wear socks because constricting the blood vessels in my leg causes intense pain.  We first discovered this the first time they casted my leg after I got CRPS.  I'd forgotten how much pain that cast caused, but it's vivid in my mind now.

I was eventually able to find a pair of regular stockings, which are still restrictive, but at least they aren't that bad.  The night turned out lovely and although my leg hurt, it could have been so much worse.

My stimulator is still broken.  It looks like Tuesday next week might be the first chance I have to get it fixed, but even then, the Rep hasn't called back to confirm :-(  I'm still crossing my fingers that Tuesday is the day.  The pain is driving me batty.  I can't sleep when my leg hurts this much.

Update to The Downfalls of Heat:
I tried laying off the heat for a while.  It didn't seem to make much of a difference.  Lately I've been using the heat a lot more, trying to ease some of the pain.

My stimulator is broken!

When I said a while back that I was lucky that I hadn't had any problems with my stimulator, I my have spoken too soon.

I went to turn on my stimulator the other day.  I've been doing this long enough now that I don't really pay much attention to the programmer.  I have the motions memorized.  I decided to turn on a program I hadn't used in a long time and got a "program corrupt" message.  Uh-oh.

Oh well.  I simply selected a different program and moved on.  Then...

A couple of days later I went through the same motions and when I looked down at the programmer's screen I noticed there was nothing.  It was black.  I had hoped it was because the batteries in the programmer weren't seated properly, or maybe it was a case of the wand not being inserted properly, so a few quick adjustments and we should be back in business, right?  WRONG!

That was okay, though.  I know my programs by heart now.  There are a select few that I use the majority of the time so I could just go ahead and switch programs by memory.

I did put in a call to the company that made my stimulator, though.  It was Good Friday and the office was closed but the very friendly Customer Service Rep I spoke with offered to put in an emergency ticket to get it straightened out this weekend.

I'm sure there are people out there who are in much more dire situations than myself, and since I could still switch my programs by memory I told him that was unnecessary.  He said he would put in a regular ticket and someone would call this weekend or on Monday.

Good, problem solved.  Last night I tried to change the stimulation so I could sleep (my daytime program is much higher than my nighttime program.  There's no sleeping while running the daytime program).  No matter what I did the program wouldn't change so I had to shut the stimulator off entirely.

Since it's the weekend, and I have a lot of downtime this weekend, I can't run my daytime program.  It's simply too much stimulation.  My simulator is now turned off and my leg HURTS.  I really had forgotten how painful the CRPS is until my stimulator stopped working.  My foot is so cold and in so much pain!

Now here's to hoping the technician will call Monday and be able to fix it then.  Otherwise, this upcoming week at the office is looking to be a long, painful week.  Someone get the painkillers and heating pads ready!

Hooray for good days!

It stormed here last night.  I was awakened a few times by the thunder and lightning, which made me very tired this morning.  I got up a little early, and was at work a little early.  When I got there I found out the power was out.  After a little while I was told to come home since the outage didn't have an end in sight.

I have to say, that's pretty darned good timing.  It's been a crazy few weeks here.  Last night, seemingly for no reason, the muscles that sit just on top of my SCS battery started twitching.  I tried laying down to get it to stop and it didn't.  I kept changing my position slightly in hopes I could relieve it.  No such luck.  So it twitched away all night.  It's still twitching.  I'm not sure what's going on, but it is pretty painful.  All that to say if the power was going to be out any day and they were going to send me home, today was the day.  I can't believe how lucky I am.

Speaking of work, like I said, it's been crazy.  We've been busting our butts, since this is one of our busier times of the year, and it's taking it's toll on my RSD.  Of course I'm sure the weather fluctuations aren't helping, either.  It was 73F here yesterday.  It's only March.  I enjoy the warmer weather, but I'm sure winter will be making a vicious comeback in the next few weeks and I'm not going to be a happy camper.

Remember back in February when I talked about the glass lid I dropped on my foot in December?  The bruise under my toenail is still there.  It doesn't hurt any more than the rest of my foot hurts (I don't feel any added pressure or anything), so I have no intention of having it checked out.  However, the husband doesn't like that plan.  He thinks I should have it checked out and drained if that's what needs to be done.  I know that any injuries on my affected foot will take a long time to heal so I figure I might as well wait it out.

The husband and I have really found a fun hobby in home brewing.  We've completed 2 beers (the second is actually bottled and just waiting for the right moment for me to drink it).  I discussed previously how much standing is required, but with each batch we're getting better about how much time I spend in the kitchen.  I'm really having fun with this.  I hope I can keep up with it as time passes.  However, we also tried our hand at wine and I have to say that the amount of standing required with wine making is so much more conducive to me partaking in this hobby, so maybe I will always have something like that I can do.

The downfalls of heat

A few posts ago I mentioned how I could cope with the winter months by using heating pads, hot baths, and other methods of attempting to warm up my foot.  My foot is always cold.  Even when pressed right up against the heat, or submerged in a hot bath I often can't feel the heat.  My foot is just cold -not numb.  I couldn't be so lucky as that.  It's a cold pain- and nothing will warm it up.  It's hard to explain the col pain to someone who doesn't suffer from the symptom.  It's kind of like if you walked outside in the middle of a snow storm, with no jacket.  The snow bites into your skin and after a few minutes the cold permeates to the bone and you feel this deeply painful chill.

Then today I ran across this article on MSNBC http://bodyodd.msnbc.msn.com/_news/2012/02/22/10470748-heated-seats-burn-bums-of-2-women and it got me to thinking.  Ever since I got CRPS/RSD I've had some discoloration, and the burning pain comes and goes.  I wonder if using heat as often as I do (in the winter it can be a near daily thing) could be creating more of a problem with my leg.  I wonder if maybe that's part of the reason the winters can be so difficult.

So I think I'm going to try to cut back on using the heat.  I will try not to use it as often as I currently do and I'll see if that brings any improvement.  It's easier to avoid on the weekends anyway, so there's no better time to start than now.

Brewing beer

The husband and I got a home brewing kit.  We brewed our first batch on February 20th.  It was President's Day so both of us had the day off and we decided it was the perfect time to try it out.  I wanted to be right there with him the whole time for our first batch.  I did grab a chair a few times during the process.

Let me begin by saying that brewing beer takes a while.  We made a Brown Ale as our first beer.  It needs to ferment in the fermenting tank (full disclosure- its a bucket, not a tank) for about a week, then it needs to be transferred to another tank for a couple more days.  Then we'll be ready to bottle our beer.  After bottling we can drink some of the beer immediately, but for best results we'll have to wait a few more weeks.  It's a good thing we made so much so we can try it at various times during the final aging process.

In the meantime, we had to make our wort.  This required hours of standing in front of the stove, stirring (and then just watching) a big pot.  After that we had to cool the boiling liquid in an ice bath, which took another 2 hours or so.  Then we siphoned our beer into our fermenting tank and put the tank in our closet to ferment in the dark for a while.  Finally we could sit down for good!

Needless to say we went to sleep early last night.  I'm still exhausted an my leg is screaming at me, but it was well worth it.  We had a blast.

When this batch is done we want to try our hand at wine.  From what I've read the whole beginning process is much easier, but there seems to be more tending to throughout the whole process.  I can't wait!

This crazy thing called life

I got a new computer!  Now I can blog again!  Alright, I probably still won't be updating often, but I have less of an excuse now.  The computer I was using before could barely even load my blog.  It made posting such a hassle.

Life has been crazy and this winter has been driving my leg wild!  It's been cold and then warm, cold then warm, snowy, sunny, rainy, and everything in between.  I wish it would just stabilize.  I wouldn't mind if it were cold.  I wouldn't mind if it snowed.  I just wish it wouldn't get so warm again so soon after.  It's below freezing here today- as I look out the window I can see its snowing- and tomorrow it's supposed to be near 50 degrees Fahrenheit.

Oh well, so goes life.  It rarely bends to our whims.  Space heaters, hot baths, and heating sachets still exist so for now I'll stick to those for what little relief I can find and hope for Spring soon.

I got a phone call from the doctor that implanted my stimulator a few weeks ago.  He was calling to inform me the manufacturer had issued a recall of certain parts of certain stimulators.  From what he said some people were either unable to charge their batteries or the batteries were not holding a charge for very long.  Thankfully I have not experienced this trouble.  It was very nice to catch up with him, though.  He's very friendly and I didn't expect to hear from him again until I needed to have my battery replaced.

I am still so grateful I decided to get this Spinal Cord Stimulator.  As bad as the bad days are I know they could always be worse.  The good days are so much better than they could be otherwise and that makes the bad days so much easier to cope with.

I dropped a glass lid on the big toe of my right foot on December 27th (I keep track of these dates because I suppose I should).  As of today, February 21, the spot is still black and blue.  The spot doesn't hurt inordinately much, when compared to the rest of my foot, and I suppose it kind of blends in when my foot starts getting really cold and turning bluish-purple, but I do wish it would go away soon.  When I catch it with the corner of my eye, there's an immediate sense of alarm.  Of course soon enough I'm reminded of what the spot is, but for that split second it scares the crap out of me.

And now a shout out to all my USARSD friends.  I miss you all!  I hope someday soon we can really catch up!