Living with CRPS

Batteries are a must.

2011-08-02T18:01:00.000-04:00

I don't often have to change the batteries in my stimulator's controller. The display is supposed to warn me when the batteries are getting close to the end of their lives. Well, last night it did not warn me. This is when the importance of keeping backup AAA batteries hit me.

It's been a crazy week. I've been overloaded at work because a coworker is on vacation. My birthday was last Friday so we went out to a winery Saturday to celebrate. Sunday my sister and I went on a little road trip so she could set up a big surprise for my parents. It's been insane and I've been spending more time on my leg as a result. So let me fill you in a bit here.

I'm still getting the hang on figuring out which SCS programs to use at any given time. I have figured out the most comfortable setting for when I'm trying to sleep, and I vary my work settings a little bit depending on how I'm feeling. However, when it comes to standing for long periods of time I still don't have it all figured out.

On Saturday my husband brought me to a cute little diner and to the winery that makes my favorite wine. We arrived and walked around the gift shop for a few minutes. Eventually one of the employees showed up in the tasting room and we paid to do a round of samples. It was supposed to be 6 samples but the guy was feeling generous and gave us 10-12. The whole time we were standing. When we arrived I set the SCS to a program I thought would be sufficient. It wasn't. By the time we got home my ankle was throbbing, but I made the best of it. We had a blast so it was well worth it to me.

On Sunday my sister and I drove about 2 hours from home. We walked about a half mile setting this Scavenger Hunt/Picnic thing up. After our parents arrived they decided they wanted to do some of the activities in the area, so that meant more walking. I adjusted the SCS a few times throughout the day. Again I was in a lot of pain by the time we got home.

Monday I went to work, came home, and made dinner. I must have adjusted my SCS at least 5 times in the process of making dinner. Not once did the remote tell me the batteries were getting low. Then all of a sudden I tried to turn my SCS down, since it was at a very high level, and the controller turned on, only to immediately shut back down.

I was freaking out. I wasn't entirely sure it was the batteries. There were no AAAs to be found anywhere in the apartment. It was too late to make a trip to the store for new batteries so I grabbed my "emergency shutoff switch" and turned it completely off. I could not sleep last night! Of course the first thing I did this morning was get some more batteries, and sure enough, that was the issue.

What did I learn from this? Probably nothing, but I'm going to try really hard to keep spare AAAs on hand at all times now.

My poor kitty :-(

2011-07-13T16:39:00.000-04:00

I don't mean to brag, but I have the best cat in the whole world. He's the sweetest thing you could ever meet. All he wants to do is to make more friends and find more people to love him. However, that having been said, he's had medical issues galore most of his life. I suppose that kind of makes him perfect for me, huh?

Last week he had a major problem. On Tuesday we brought him to the vet, thinking he had a Urinary Tract Infection. They sent him home with antibiotics, and all was good until Wednesday night. All of a sudden we knew it wasn't just a UTI. He spent all night at the Emergency Vet and my husband and I stayed up all night waiting for them to call and tell us he was okay.

Thursday we picked him up from there and transferred him to our local vet, where he stayed until Saturday morning. The husband and I didn't do much in the way of eating or sleeping until he came home. I missed him so much and was so worried about him. He's home now, and well on his way to recovery (YAY!!!), and we're still trying to catch up on all we missed.

How does this connect to my CRPs you may ask? Well, the lack of sleep, and the stress when he was gone, are killing me. I hadn't been doing well in the sleep department before this whole thing happened, but now I feel so far behind. With lack of sleep comes more pain. I have had the SCS turned up as high as I can handle it, but there's still pain.

The need for air conditioning lately hasn't helped. They have the temperature at the office set right around frozen snot and teeth chattering level. I have to keep my leg wrapped up loosely in a blanket and wear a sweater all day. When I hit the air outside, it's roughly the temperature of hell, so it's not a good contrast. I really do love summer, but it certainly has it's downfalls. Thankfully we've gone from hellishly hot to wonderfully mild today. Let's hope that sticks around.

Summer fun

2011-07-06T16:54:00.000-04:00

I meant to post this a while ago, but once again life grabbed me by the balls (ovaries?) and refused to let go. So, there are a lot of things to talk about. I'll try to keep it fairly brief.

The husband and I went to see the Blues Travelers in concert a few weeks ago. They were amazing (of course they were. They're always amazing). We went with another couple. We got there a few minutes early, and took our places up front and center- standing only. We stood there for about an hour before my husband noticed me fidgeting. This is a sure sign that I'm in pain and need to find a seat immediately. I was going to ignore it because I didn't want to ruin anyone's night (I know, I know, but I like to accommodate people), but my husband told the other couple we were finding seats and directed me toward the section of open bleachers. I found me a good husband :)

When we sat down the woman we were with said she was grateful we found seats because she had to sit down. She explained that she has a chronic pain condition, and had reached that same point that I had reached. From that point until the end of the night we discussed the trials and tribulations of dealing with chronic pain. It was nice to have someone to talk to that really understood my pain, and she was right there in front of me! We had a blast.

I paid for it the next day, but the concert was well worth it.

I had a cousin that graduated in June. We went to her party and had a great time hanging out with my family. One of my cousins and I have a long-standing feud where we try to do mean things like push each other in pools and stuff. I pushed him in a pool once years ago and he's never really made me pay for it... at least not yet. I fully expect to be thrown into a pool any time he's around. He could easily pick me up and throw me.

So, I was joking around with him and he was picking on me at the party. Finally I got annoyed enough to try and get him to stop. I ran up to him and tackled him to the ground. That was all well and good- until he took me down by the bad ankle. I'm grateful he was properly trained to perform that move, because I would have been in a much worse situation had he not been, but it HURT! I know I deserved it, and I don't blame him in the slightest for doing it, but it took at least a week for me to be able to put weight on it again. UGH! What can I say? It's the summer!

Showers and Baths

2011-02-23T23:10:00.000-05:00

Allow me to begin this post with a triuh about me I'm not sure I've ever shared here. I am a dummy. I do things sometimes, knowing they're a bad idea, and end up hurting myself.

Monday, February 14 started out in this way. I got into the shower, the one we've jury-rigged with shampoo bottles to hold down the curtain so you're not wearing it the whole time you're in there, and began my routine. As I reached for the soap I had a moment of clarity and knew what was about to happen. Unfortunately for me I was powerless to stop it.

One of those shampoo bottles jumped right off the side of the tub and dropped right on to the top of my foot. I swear, it jumped. I did not knock it over and I did not drop it (okay, I may have knocked it over a bit). Immediately the pain coursing through my body made me want to vomit. I looked down and noticed my foot was already swelling and turning black and blue. That's always a good sign, right?

That's when my shower became a bath :( I couldn't stand on the foot anymore so I sat down to complete my shower. I went to work that day and came home to look at my foot. The black and blue was gone, replaced by a deep reddish purple. The swelling remained.

At this point we'll fast forward a week and a half. I'm still stuck in the bath because I can't stand on that foot and I'd rather not fall over doing the one legged hop all through my shower. The swelling has gone down some and the black and blue have returned.

So now I ask why did I reach for the soap in the way I did? I knew that was going to cause problems, as it usually does, so why did I do it? Oh that's right, I'm a dummy.

It was 2 degrees out there today, before windchill. The pain today is incedible. On a scale of 1-10 I'd say it's easily a 9. I'm popping the Aleve and staying off it as much as possible.

A Mexican Fiesta!

2010-12-26T10:43:00.000-05:00

Allow me to begin by saying Merry Christmas to those who celebrate it. My husband and I do not, but it was still a crazy day. Since I had a long weekend I told him I'd make him anything he wanted for dinner Saturday night. He said he wanted a Mexican Fiesta. So a Mexican Fiesta it was. Thursday night I compiled a list of recipes, and on Friday I headed to the store. Big mistake.

Since it was Christmas Eve, and they weren't open on Christmas Day, the place was a zoo. I may as well have walked from my house with how far back I had to park. I waited in line to get a cart and then went to the produce section, where there was enough room down each aisle for a single cart. I parked my cart at the end of the aisles and ran down to grab the produce I needed. After about half an hour in the produce section I went for meat, where for some reason people were parking their carts and gabbing. Yay for bottlenecks!

After I got the various meats I needed, I went toward frozen foods, and was on the lookout for international foods, and baking. International foods had food stuffs for nearly every country except Mexico. Yay! I must have missed baking in the gigantor store, and after grabbing frozen corn, I made a bee-line for the registers. I'd had enough of impatience, being slammed with shopping carts, and screaming children.

Then I headed for my friendly, local grocery store for the rest of my ingredients. All around the store were complaints of the place being a madhouse, but had they been through the hell I had just endured they would have been grateful for the semi-peaceful store they were in.

That night we went to my Mother-in-Law's for dinner. It was nice and relaxing, and my husband invited them over for our Fiesta. They agreed.

Fast forward to Saturday morning and there I am, realizing our place is a mess, and with a list of 8 dishes to make. AAAHHHHHH!!!!!!! The husband had to work at 8, so from about 7:45 on I cooked and cleaned like a mad woman. He got home from work around 4 and I still had 2 dishes I hadn't even started on, but the apartment was clean as a whistle. The In-Laws never arrived.

We scratched the last 2 dishes, and sat down to our Fiesta. Well, he sat down. I continued to cook all while we ate. Everything was delicious, and well worth the work. By 8:00 we were serving dessert and the day had finally come to an end. I laid down on the couch for a breather and could see my ankle swelling like crazy.

Within a few minutes I was asleep, pain or not. We didn't even do any cleaning up until this morning. As I type this the dishwasher is running it's fourth load in 2 days and all I want to do is go back to sleep. Today will be a mostly lazy day, though, so that will be nice.

My ankle is still quite swollen, and very painful. The current pain level is an 7/10, which is to be expected, I suppose.

Ugh, winter :(

2010-12-11T08:30:00.003-05:00

I used to love winter. It used to be my favorite time of year. I remember playing King of the Mountain atop the skyscrapers of snow left at the end of our driveway with my family and friends. Skiing and sledding were some of my favorite ways to pass the time. Who can beat coming inside after making a snowman, dripping with melting snow, to a waiting fire and a big cup of hot chocolate? Ah the memories.... but not anymore. I can't go out and make a snowman anymore. There's no more snowmobiling, skiing, sledding, snowmen, snow angels, King of the Mountain, or snow dripping from everywhere (even off the hat on my head). The Winter wonderland I remember from my childhood is now far out of my reach. At least there's still waiting fires and hot chocolate... well sometimes.

Now those wonderful winter memories have been replaced with constant pain that keep me firmly seated in the present. I can never warm my leg up. I have layers of blankets on my bed, I wake up in the middle of the night sweating, but still the leg is chilled to the bone. I HATE winter now. Don't get me wrong, my stimulator helps a great deal, but even with the stimulator the pain never goes away. The warmth never returns (not that I would expect that to happen), and I'm left longing for the winters of my childhood.

All I can do now is to find indoor activities to keep my mind off the cold and pain. Like tonight. The family is having a murder mystery dinner, and as of last night I'm in charge of running the game. It should be a ton of (warm) fun, and hopefully the pain will stay away.

Current pain level: 6/10 :(

Thanksgiving

2010-11-26T10:37:00.003-05:00

I'M ON VACATION!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yes, that absolutely required yelling and all of those exclamation points. I'm so very happy that I have a full 4.5 day weekend. Oh, did I not mention I also got out of work early on Wednesday which gave me that extra half day? It's going to be great.

So Wednesday night we went to a concert. My husband's coworker's band was playing their first show so we went out to support them. I hadn't slept well Tuesday night and the show didn't start until 10 pm, so by the time we got there I was exhausted and in quite a bit of pain. I turned my stimulator way up, and sat back to enjoy the show. We made it to the end, made a quick exit, and were back home by 12:15. Then I went directly to bed, and slept until about 9 the next morning. By the time I woke up I was still exhausted, but I certainly got a full night's sleep. It was wonderful and worked wonders for my leg.

We went to my Mother-in-law's for Thanksgiving dinner. It was nice to spend time with the family. It was really relaxing. Then we went to bed early again last night. My leg barely hurts at all this morning. I'd say the pain level is right around a 2/10. I can't remember the last time it was this low. This is going to be a great vacation!

HAPPY THANKSGIVING, EVERYONE!

The PAIN!!!!

2010-11-09T20:08:00.000-05:00

I do not get it. Not at all. I'm used to pain- very used to it, but only from the knee down (and even then that's not constant. Sometimes the pain is located just in my ankle. Not today. Today my leg hurts from the hip down to the tip of my toes :(

I tried soaking in a warm bath, I took some pain killers, and I've been laying on the couch with my leg elevated for 4 hours now. Nothing! No relief! I just want to curl into a little ball and cry but curling up would require movement of the leg, which will not happen.

So let's recap. Why does my leg hurt so much today? Obviously the seasons are changing. My car is frosted over every morning when I get up and I have to drive about halfway into work before the heat finally seems to be penetrating the skin on my leg. Now to be clear, I let the car warm up for a while before getting in. It has more to do with how quickly the cold penetrates the skin when I go outside.

So there's the fact that winter's around the corner, and then there's stress (we're not going there today because I'm doing my damnedest to relax right now in hopes that will decrease the pain). And lastly there's the lack of sleep. This darned cat of mine has taken to making as much noise at night as possible. That combined with stress is killing my sleep schedule. I need to get that back on track.

So I'm right back up there with the pain level today. I'd put it right around an 8/10. This is worse than the best pre-stimulator pain :(

Winter :(

2010-10-27T17:17:00.000-04:00

I'm really, really bad with titles. I'm always trying to come up with a title that properly summarizes the general idea on the subject of my blogs and I'm always really bad at it. I'll admit that it has prevented me from posting in the past, but I'm determined not to allow that to happen, so if you see strange titles that's why.

The weather here has been going between beautiful, sunny, and hot to cold, rainy, and a bit snowy. Winter is not far off :( I'm not prepared so I think I'll protest. If you see some crazy lady, walking with a limp, and holding a sign to the effect of "WINTER, GO AWAY!" it may or may not be safe to assume that's me. If snow is falling assume it's someone else.

So on to the pain. The CRPS has been flaring quite a bit lately. Work has been stressful, and again I haven't been sleeping well. Winter is likely to make the sleeping aspect worse. Thankfully there may be a light at the end of the stress tunnel at work. We've brought on some help, and hired some people that needed to be hired. That means there's a bit less work on my plate, or at least there will be soon. Yay for lights! It's been awfully dark in that danged tunnel lately.

I'm going to try to relax a bit tonight and hopefully by the time I go to bed the pain will have decreased a bit. Then maybe I'll get some sleep. That would be nice.

I've decided that considering this is a chronic pain blog, I should probably share my pain level at the time of my writing, so I'm going to try to do that and keep up with it. Right now my pain level is at a 6/10. That's better than even my best pre-SCS, but is pretty high for having the SCS.

Things are going well

2010-10-23T10:25:00.000-04:00

There's a light at the end of the tunnel. My company is finally bringing in some help. I might be able to breathe soon :) Just knowing this is coming has helped my stress levels immensely.

We went apple picking last weekend. It was a lot of fun. I haven't been in years (not since long before I got my stimulator implanted). It was so nice to walk around, enjoying the chilly autumn weather, picking apples, and just generally having a good time with my husband. My leg was really sore afterward, but I came home and made a delicious apple pork loin in the slow cooker for dinner. It was the epitome of a beautiful fall day, made all the better by the fact that I was still able to stand at the end of it. However, we picked way too many apples. We still have a ton left over and I've almost run out of things to make with them.

Tonight we're going bowling, which is yet another activity I haven't done since getting the stimulator. I'm hoping I'll be able to find a good setting on the stimulator so I won't have to continuously adjust it all night, but even if I do that's still better than the pain.

I'm tired

2010-10-13T08:28:00.001-04:00

I'm tired of thinking negatively. I'm tired of not sleeping, I'm tired of being in pain (This wasn't supposed to be a consistent thing anymore :( ). I'm just tired in general.

Last night I didn't sleep very well at all. I finally fell asleep shortly before my alarm clock went off. When it went off I groggily got up and got into the shower, hoping washing my face would wake me up a bit. It didn't, so I groggily took my shower. Just before I was done I leaned over to pick something up and knocked the conditioner bottle right off the ledge. We buy shampoo and conditioner in bulk. Doing this saves us a ton of money, but it means big objects to fall on the foot. Maybe that's something to rethink? Anyway, sure enough the big bottle of conditioner landed directly on my right foot. The pain is incredible.

The funny thing about this stimulator is that it helps immensely with RSD pain, but the moment there's an actual injury it doesn't do very much. So here I am, stimulator jacked up to 11, and still in pain. Cross your fingers this will be a short day.

When I get home tonight I'm going to try soaking my foot and hope that helps some with the pain. Then I plan on spending the rest of the afternoon with my foot propped up on a pillow. Hopefully I'll get some sleep tonight and tomorrow will be a new day, with much less pain.

Beer, Engagement Party, and Tears

2010-10-04T08:31:00.001-04:00

On my way home from work on Friday I got a ticket. I was stupid. I should have known better. It was the first day of a new month and my inspection had expired a while ago. I never should have pulled on to the highway like I did. I should have taken the back roads. But no, I wanted to take the highway so I wouldn't be late getting my husband from work. STUPID, STUPID, STUPID! Now I need to get my car fixed and get a new inspection before my court date and just kind of hope they throw the ticket out :( So the weekend started on a bad note. I was already exhausted and in pain so that was the last thing I needed.

Saturday we went to the beer festival that I talked about in my last entry. We had a blast. I turned on my stimulator as high as it could comfortably go, and off to the festival we headed. It was nice to see some old friends that I haven't caught up with in the longest time. We stayed around there for a few hours and then headed home to get some rest before a friends' engagement party.

Later that night we went out again and hung out with friends at the party. Again I managed to stand the entire time without too much pain, although I was hurting by the end. I'm glad we went and it turned out to be a good time.

Sunday morning it all went to hell again. For some reason the husband decided to start a fight. I "slept" on the couch last night. For the second time in a row I cried the whole way in to the office. Not cool.

No sleep + added stress = terrible leg pain. It's going to be a long week.

Rainstorms and Television

2010-10-01T08:42:00.001-04:00

We had a ton of rain yesterday (we're talking about 4 inches). That combined with the stress of work, and lack of sleep recently, caused quite the flareup. I spent the afternoon and evening last night on the couch in severe pain. I'd say the pain levels easily reached pre-SCS levels. So my awesome husband sat with me and watched TV. So there we were, watching NCIS and watching the rain fall and I started feeling bad for msyelf again. I'm too young for this to happen to me. Then House came on. I'll admit to feeling a pang of jealousy as I watched him pop those Vicodin pills and could see the pain melt away enough to be able to function. I found myself wishing that I could take just one of those pills without being sick for days afterward.

That's not right, though. I don't like pills. I took myself off of them all because of that. What was I thinking? Even the thought of taking them made me feel sick. I just want the pain to go away.

So I "slept" with my leg propped up on some pillows and with the SCS jacked up as high as it could go. It didn't do much for the pain, and here I am again. It's a new day, complete with severe pain. I thought these days were behind me :(

I found myself feeling bad for myself again this morning. I started crying on my way in to work because "it hurts so bad and it's just not fair" but you know what? Life isn't fair. This is a lesson I was forced to learn a long time ago. It would be nice if the playing field were evened up a bit, but I wouldn't wish this on even my worst enemy, so I'll take it, and I'll try to make the best of it. It's times like these my high school friend's words echo in my head "Bad things happen to good people because bad people can't handle the stress." Maybe this is evening the playing field a bit?

Tomorrow is my town's annual beer festival and I plan on attending with my husband. I have no doubt the SCS will be on full blast, and hopefully I'll be able to stand up the whole time we plan on being there, without being forced to hide out in the car. Wish me luck.

I'm neglectful :(

2010-09-15T19:44:00.000-04:00

Don't hate me! I'm seriously terrible at keeping up with this blog and for that I apologize. However, my husband is at work tonight so here I am.

I'm not going to go into the work crap because I'm trying to pretend it doesn't exist. Yes, dear readers, this is my denial face. Isn't it pretty?

So my leg has been acting up because of that thing that doesn't exist, but I'm dealing. I've been trying out more programs on my SCS lately. I know, it's been freaking forever since I got the thing, so you'd think I would know all these 6 (ONLY 6!!!!) programs inside and out, but I don't.

When I first got the stimulator I found programs that worked for me when I was trying to sleep, when I was sitting stationary, and when I was walking. Until now the tried and true always worked, so why deviate?

Lately, though, the pain has gotten pretty bad so I've been forced to experiment. I'll admit that part at least has been kind of fun. I've been learning a lot about how these programs feel and I have opened up a whole new arsenal of potential pain killing buzzes!

I would go on, but my head hurts so I'm going to lie down. Thanks for reading, and I'll try to update again before the apocalypse ;)

Energizer Bunny

2010-08-12T19:50:00.000-04:00

I'm like the Energizer Bunny in that I keep going... and going... and going...

Life has been crazy, with no end in sight. Work has been incredibly stressful. I've been working crazy hours. I really do just work for the weekend. It's a sad state of affairs.

Of course with stress comes pain. I've been keeping my stimulator turned up as high as I can tolerate it, but I can't sleep at night with it on high enough to block the pain signals, so sleep hasn't been coming very easily either.

I took Benedryl last night and got some sleep (although medicine induced sleep is never very restful), and when I woke up this morning my ankle felt almost disconnected. It's hard to explain, but it was like there was space in the joint. This happens sometimes after I take something that knocks me out, but I always hate it :(

Still going...

The Pain!!!

2010-07-27T20:51:00.002-04:00

It's official. I have gone back to being a total wuss about pain. Before I got my stimulator dealing with insanely high pain levels was nothing to me. It was a walk in the park. In fact, in college my physiology professor ran a few tests with me and we found out my body reacted in the complete opposite way to pain than it should (when my pain levels went up my heart rate and breathing decreased, which we figured was something of a coping mechanism for my body). Now my leg starts hurting even the slightest bit more than normal and I want to curl up and cry. What happened to me?

A friend of mine passed away Friday July 16, and then a second friend passed away on July 23. I was on vacation last week but ended up spending a good deal of it either dealing with those deaths or dealing with whatever stomach bug I had Wednesday and Thursday. Not fun. The calling hours for the second friend were yeserday and the funeral was today. It's been stressful.

By the time I got home from work today I realized how much pain my ankle is in. It's incredible. I can't remember the last time I've felt pain this severe. OTC pain killers aren't touching it and my stimulator is having no effect :'( I miss that wonderful coping mechanism I used to have.

So how am I coping today? For now I'm laying on the couch with my leg elevated, watching TV. Hopefully I'll be able to get a bit of sleep tonight and the pain will have decreased a bit by tomorrow. If not it's going to be a long way until Friday.

Someone tell the world to stop turning!

2010-06-24T20:02:00.000-04:00

I'm ready to get off! Work has gotten nothing but more insane since my last post. We had some more people leave which added a couple more jobs on to my list. My boss coninues to assure me we will be bringing in more people to help me out (he actually told me the other day that it's unreaonsable of my company to expect me to ge all of this work done, so that's encouraging), but good help can't come soon enough. We did get one new person, but we need more.

I need a vacation so I'm taking one. I'm so excited! I put in for a week toward the end of July. My husband and I are going to be off together and although we don't have solid plans, it's nice to know I won't be in the office for an entire week.

And starting tomorrow night... Mini-vaca! We're going on a trip out of state and I'm so excited. We'll only be gone for the weekend but it should be nice and relaxing.

I really need this. My allergies have been going crazy with all the pollen in the air, and the stress of work has been making my ankle flare like crazy. That's been leading to little sleep, which makes my ankle flare more, and the vicious cycle continues.

Life is crazy

2010-02-02T18:35:00.001-05:00

I know, I know... I haven't updated my blog in a long time. I kind of suck at this whole blog thing.

I'll start with an update on my ankle. I am now off crutches. It feels nice to be "walking" again. I still have quite the limp, and the pain can still be intense at times, but it has gotten much better. My pain levels have gone back down to a 4 or 5 when I first wake up, and only get bad later in the day. The doctor gave me a clean bill of health the last time I saw him. Eventually I'm sure the pain and limp will decrease. I just need to stay on it and keep working it.

My mom bought me Wii Fit Plus a few months ago and I was finally able to start using it in the beginning of January. I can't begin to express how much it has helped in the rehabilitation of my ankle. I told my orthopedic doctor about how I've been using it, and he gave his stamp of approval. He said it should aid in my recovery. He also clued me in to a new game for the Wii, which I'm excited to try at some point. It's the Wii Resort, or something like that. I'll have to look in to it.

Work has been insane lately. My boss brought in some help, and both of the new hires are great. Hopefully we'll be able to catch up a bit. I'm in the process of training one of them now, so hopefully soon she'll be able to pick up some of the slack.

It's Christmas...

2009-12-25T22:00:00.000-05:00

I'm home alone tonight (my husband has to close, so he won't be home until 11:30-11:45). This morning we went to my Sister-In-Law's house for Christmas. It was really nice to spend a few hours with the family. My niece is adorable when she opens gifts.

We'll start with the good news. My ankle seems to be progressing quite well. I can limp on it for short periods of time now. That's a huge milestone for me :) I'm continuing the the PT, and slowly putting more and more weight on it as I walk.

Then to the bad news. I'm able to give a bit of a forewarning this time. I may not be able to post any updates for a while. Work is picking up again. We reach a huge milestone recently, and lost a major part of our department, so I'm going to be insanely busy there for a while. Hopefully the stress doesn't set back my recovery.

A light at the end of the tunnel?

2009-12-16T18:39:00.000-05:00

Shortly after my last post I broke my ankle (yup, the one with the RSD). It's been a long 4 weeks. I hadn't used crutches in such a long time I had almost forgotten how to use them. I've gotten the hang of it since, though.

I've been trying my best to keep it mobile and keep up with my PT, as per the doctor's instructions.

I had my check up with the orthopedic doctor today. He checked out my ankle, had me stand on it (which I managed to do for about .5 seconds), and told me it looks good. He said it seems to be healing, and it doesn't seem as though I've done any more damage than they had originally expected :D He scheduled a follow up for 6 weeks from now, but he said that if I'm walking on it in a month or so, I could call and cancel it.

It's nice to get some good news :)

Oh the stress of life...

2009-11-16T17:23:00.000-05:00

It has been incredibly stressful around these parts lately. The stressors have just been piling on top of the work that I've been talking about for a while now.

The week before last my grandfather passed. He had cancer, so we knew for a while that he was going to die, but once it got bad he just deteriorated so quickly. Before we knew it he was gone.

Then on the way home from the funeral on Thursday I started coughing this hacking cough, and sneezing. It didn't let up all weekend, so I went to see the doctor today. Yup, you guessed it, I have H1N1.

I just can't seem to catch a break lately.

Flare ups...

2009-10-25T21:13:00.000-04:00

I've been very busy lately. I've been working a lot. I've been working almost 10 hours of overtime every week :( It's really stressful. It's been causing my RSD to flare quite a bit. It's peaking at about 6/10, so it's not as bad as before the SCS, but it still sucks. Hopefully before to long my company will find a way to get me back on my regular 40 hour a week schedule.

In my last post I mentioned my husband was sick. He's feeling much better now :)

Busy as a bee

2009-10-19T19:53:00.002-04:00

The last time I posted an entry we were moving. We're done with the moving, but we're not really unpacking unless we need something. We're so sick of it all at this point.

We've been so busy. My husband has been working long hours at his job. He usually works late into the night, which doesn't really jive with my early morning schedule, but we're working though it. I've been working overtime at work again. There's so much to do at the end of the quarter.

A couple of weeks ago a local brewery had a beer festival. We had plans for a bunch of people to come over afterward, but only our families ended up showing up. We still had a great time, though. We made chili, pulled pork, mulled cider, and this delicious buffalo chicken dip. Everyone had tons of fun.

Then this week my husband got sick. It's nothing serious, and I think he's on the mend, but I've been taking care of him. I had been planning on using Friday night to unwind. Instead I sat up until 3:30 with my husband becase he couldn't sleep. It was a long weekend...

It's been kind of stressful, so the pain level is a bit higher lately. I'm thinking of taking a vacation coming up in the next few months. I really need to talk to my boss about that.

Ah....Summer

2009-07-31T18:50:00.002-04:00

I can't even begin to describe how busy I've been lately. My husband just got a new job. I'm so excited for him!

I've been busy with work. There's a lot going on at the company I work for.

We've also been in the process of moving. We finally have our own apartment! It's been a long time in coming and I'm so glad it's finally here.

Because of the move leg has been in a lot of pain. I've been moving things in and setting them up. Sometimes it's a few hours before I can finally sit down and just relax for a few minutes. Even then I need to get right back up and back to work.

It's times like these I'm glad I have the stimulator. The last time we moved I was completely useless. I was still in recovery from the implantation so I couldn't bend, lift, or twist. All I was allowed to do was sit on the couch (I also couldn't sit or stand for more then 20 minutes at a time) and direct people. I'm so glad I can actually be useful this time.

This was a big week for me. Not only did my husband start working last week, and we got an apartment, but it was also my birthday this week. My husband planned such a great couple of days for us. The night before my birthday we met some friends at the hibachi grill. It was so much fun and the food was delicious. I even managed to escape embarrassment because no one called birthday on me :D

On my actual birthday my husband brought me to an amusement park. It rained the whole time we were there, but that actually ended up being for the better. The rain wasn't heavy, but since it was raining the park was pretty much empty. We got to do everything we wanted to and only had to wait in 2 lines the whole day!

I will say that ever since then, though, my leg has been screaming at me. I've spent way too much time on my feet in the last week. Hopefully this weekend the move will be over and my husband and I can just relax for a while.

Florida

2009-06-06T20:11:00.002-04:00

My husband and I recently travelled to Florida with my family. We had a great time. We went to Universal Studios, 3 of the Disney Parks, and we saw the Blue Man Group. It was so much fun.

Each day that we went to the amusement parks we were walking around all day. This is the first time in years I've gone to an amusement park and didn't have to rent a wheelchair. Although I was in some pain by the end of each day, it was so much easier to cope with than it has bene in the past (even when I had the wheelchair). It was incredible.

Again way too long....

2009-05-07T16:14:00.002-04:00

Wow, I never seem to have time to update this blog now. My husband and I are always on the move. We've been so busy lately doing things I never could have done before the SCS was implanted.

On April 21 we went to see the remaining members of the Grateful Dead perform live in Buffalo. It was a great show! They played a bunch of songs I know and love, and then they played a few songs I had never heard, which I also loved! I didn't think I was a dead fan until I saw them live.

Last weekend I worked an 8 hour convention for my company. It was 8 straight hours of standing on concrete floors. I won't lie, my leg was killing me afterwards, but I wouldn't have made it through even an hour before I got the SCS.

Very soon my husband and I will be starting our search for our first house. It's so exciting! I can't wait, because I know that now I'll be able to walk through the house and not be in terrible pain the whole time. So I guess you can all take that to mean that my updates will still be fairly rare. Hopefully once things settle down a bit I'll be able to devote a little more time to my blogging.

Oh the stress...

2009-03-31T16:21:00.003-04:00

I realize it's been a very long time since I last posted. I've been meaning to update this, but haven't had much time lately. I'm happy to report that my stimulator is still helping a great deal with my pain. Now on to the bad news... the stress:

My coworker left today. He's going to live out his dream and I couldn't be happier for him. A few weeks ago I offered to take over his job, as it's a much needed position in the company. Today they tell me I'll be doing it temporarily until they can find a suitable replacement for him. I got all of 15 minutes of training. The job that he does really required about 3 full weeks of training in order to do it properly.

The job is in technical support. I'm supposed to be dealing with emails more than phones, which is a good thing, because I have a fear of phones. I used to work as a telemarketer and ever since I've had serious anxiety surrounding phones. I rarely even answer my own phone.

I'll be doing this job on top of my regular work, which also has gotten more complicated recently. I really hope they find a good replacement soon.

On top of all of this, I have barely been sleeping. Our cat has been keeping me up at night. I also have been dealing with tension headaches recently.

Yesterday was my mother in law's birthday. My husband and I made dinner for her and I could barely even eat because I had a headache. I made dinner, picked at it a bit and then got in bed around 7:00. I took some muscle relaxants and slept a bit, so that was good.

Although the stimulator is helping with my pain, it's not getting rid of it entirely when I am this stressed out and sleeping so poorly.

I'll try to update again soon, and hopefully will have better news.

Headaches

2009-02-28T09:18:00.002-05:00

UGH! I've had a headache now for 2.5 weeks. It's terrible. I went to my doctor, thinking it might have something to do with some medications I am taking and they put me on Ultram for it. She said this should get rid of the headache. It's been about 5 days and nothing yet :-( I'm getting really sick of this. I'm calling her again this week if it still hurts.

I had an appointment with the pain clinic doctor yesterday. I've been so out of it because of the headache that I completely forgot. We were sitting in Friendly's when my phone's alarm went off. I called the doctor's office, and sure enough I had an appointment about 10 minutes later. I told the receptionist that I might be late, but I was leaving right then. She told me not to rush and rescheduled for Tuesday.

I feel like such an idiot. The appointment was only a checkup before I go back to work full time, which I start doing on Monday. I just can't believe I forgot.

UGH! No sleep

2009-02-13T09:21:00.003-05:00

I've been really stressed about work lately. There have been some not so cool things going on. So last night the stress was really getting to me and I couldn't sleep. My stupid leg hurts again :( It's not as bad as it has been in the past. My pain level is about a 5/6 instead of being a 10, but it still sucks.

It was rainy/windy yesterday and there's a layer of snow on the ground this morning, so I'm sure that's not helping to much, but hey that's what I get for living in NY.

So yeah, that's my update for the day.

An awesome, yet emotional weekend

2009-02-09T08:35:00.002-05:00

My husband and I went on a wine and chocolate tasting tour this weekend. It was at a wine trail about an hour from where we live. The wine and chocolate were both awesome at every winery we went to. It was a 3-day event, but we only went on Saturday and Sunday. We were too busy on Friday to attend.

I have to say I had tons of fun, and now I truly know how much the SCS has changed my life. 4 months ago, I would have been able to go to one or two wineries before I had to call it quits. My CRPS just would not have allowed me to stand for that period of time. The first day we hit 5 wineries. As we were leaving the 5th winery, my husband turned to me and said "I'm tired. Are you okay with going home now?" This was the first time since we met that I wasn't the one who had to call it quits first. It meant so much to me!

Day 2 we hit 6 wineries. By the end of the 6th we were both ready to go home, but it wasn't my leg telling me I was done. We were both in tears on the way home because of how much it meant to both of us for me to be able to do these things and not be held back. Although my back was sore, it wasn't enough to make me stop.

In the last 7 years I've never been able to just enjoy myself. It was a huge weekend for me. I know there will be many more to come. I'm so excited!

Today is the day!

2009-02-06T08:23:00.002-05:00

Today marks the 3-month point from when I had my SCS implanted. I'm so excited. Beginning today I can be much less careful about what I do. Of course I'll be starting it slowly, but I can now bend, lift, and twist without worrying about the lead in my spine moving. I'm so excited.

My husband and I are going on a wine and chocolate tasting tour this weekend. It should be lots of fun. I'm a little worried about my back, because I still can't sit or stand for more than 3-4 hours without being in some serious pain, but I guess we'll see how it goes.

My recovery is progressing well. I'm still only working part time until the end of this month, so I'm going to be doing more in hopes of getting my back used to me being up and about before I go back in.

As for the pain levels in my leg, they are still very low. I'm so happy to report this is actually working for me. I was beginning to think I'd never see relief from this beast.

Again, I'll do my best to update this more often now. I really suck at this blogging thing.

Seriously stressed

2009-01-13T19:57:00.001-05:00

I realize it’s been a very long time since my last post. I decided it was time to update my blog. We've been going through some things lately, and they have been taking a toll on my ability to recover.

We had some housing issues, and those have yet to be resolved. We’re looking for another place to live after being displaced from the house we recently moved into (there’s way too much to go into here).

I’m back at work part time, as I said in my last entry. There is a lot of work to catch up on, but thankfully I have been offered some help in that area. It’s a huge relief.

As for the good news, I’m on my way to recovery. It is very slow going, but I will get there. I have a little under a month left until I hit the 3-month mark. That’s pretty exciting. The pain in my leg is still on the low end compared to before the operation. It has gotten worse lately, but that’s most likely due to stress and the constantly changing weather we’ve had lately.

I’ll try to be better about updating my blog, but I can’t make any promises. With all that has been going on lately I have very little time to post. I’m working on that.

FINALLY!!!!

2008-12-16T14:06:00.006-05:00

So I finally got to take pics of my back. These pictures were taken today, so they are about 6 weeks post operation. Please ignore the mess in the background of the first pic. We really are working on getting this place cleaned up, but like I said there's a ton of work to be done.

The vertical incision on top is where the leads were placed. The horizontal incision on the bottom is where the battery pack is. As you can see it's stil slightly discolored. In person it looks kind of bruised.

I'm still working on getting my cell phone to hook up to my computer properly. If I ever get it to work I'll post the pics from right after I had the trial put in.

The timing couldn't have been much worse...

2008-12-13T09:04:00.002-05:00

Like I've said in previous posts, I'm so glad I went through with having the SCS implanted. It was one of the best decisions I've ever made. That having been said, the timing couldn't have been much worse.

My grandfather is dying of cancer. We thought he'd have more time, but it's not looking good now. He's on oxygen and pain killers constantly now, and hospice workers come in frequently to help him out. Of course it's important that I go visit him before he passes. The only problem is he lives about 5 hours (by car) from my husband and I. I simply can't ride in a car for that long of a time period.

We were going to visit him this weekend, but I don't think I'll make it. My husband says we can go up next weekend, but what if I can't ride in a car then, either? I don't think I'm going to be able to see him before he passes. It's heart-wrenching. My mom tells me not to worry about it, and that grandpa would understand, but that doesn't make me feel any better. This totally sucks.

Long time no post

2008-12-12T05:12:00.002-05:00

I've been very busy lately, so I haven't had the time to post. We moved at the end of last month, and we haven't been able to get settled yet. This house is in total disarray, and needs to be cleaned before we can unpack anything. Once that's done, we need to start fixing it up to make it more livable. We'll get there, but it's going to take some time. I feel bad because I'm not really able to help out. Darn this SCS!

That's not to say I'm not glad I have it. I certainly am. It has been helping a lot with my pain. That's a wonderful feeling. Although my back is still pretty painful, I'm glad that I had the operation done. I know there will be an end to this pain, which I didn't know with the RSD.

I started back at work part-time on Monday. I work for 3 hours a day from the office, and then I come home and usually put in a few more hours. I have been working 7-9 hours a day most of the week. I think I've been overdoing it so yesterday I just came home and relaxed. I think I'll be doing the same again today. I've been taking 800 mg of Aleve (Sodium Naproxen) every 4-6 hours for the pain. It doesn't seem to be helping too much so I know I need to slow down a bit.

I've been playing with the stimulator settings a little. Most of the programs are pretty comfortable for me. I don't think I need to have them adjusted at this point.

The Representative from the company warned me that when I move I might feel sudden increases and decreases of the stimulation. For a while I didn't notice these changes, but just recently I started feeling them as I sit or stand, turn my head, or move in other normal ways. This is not going to go away, so I'll have to get used to it. I have to admit it is somewhat annoying, but I'm sure it won't take me long until I barely notice it is happening.

The Great Exodus

2008-11-29T09:41:00.002-05:00

We're moving today. It sucks because I can't bend, lift or twist. I've been trying to help out with packing, but I'm not much of a help. My husband will get worried about me after a few minutes and make me sit back down so I don't overdo it. That's certainly a good thing, but I feel bad for not being able to help more. We have until Monday to be out. Thank the lord for our friends and family who are helping us out. We really can't thank them enough.

My back seems to be healing well. I didn't think I would need a full month off of work, but I can see now that the doctor was right about that. It's almost been a month, and I'm just starting to get to the point of feeling like I could go back soon.

Well, here we go....

The road to recovery continues

2008-11-23T19:58:00.002-05:00

Today is 17 days post-op. I figured it was time for a new post updating my status.

My headache is fully gone now. It's such a relief. My back is still sore and I'm having trouble sitting or standing for extended periods of time. I may have overdone it a bit yesterday, so I've spent all day today laying on the couch. It's pretty sore right now. I can tell, however, that I am recovering. The scars also seem to be healing pretty well.

My RSD pain has increased a bit from the first week post-op, but it's still very low in comparison to the level it was at pre-op. I can't describe how it feels to finally be relieved of some of that pain. I've been walking (well kind of walking... the pain in my back doesn't allow for me to walk as easily as I did pre-RSD) without a limp since the surgery. It's amazing! I can only hope this trend continues.

I have been noticing the battery pack more and more as the days progress. In the beginning I barely even noticed it was there. Now it hurts when I lay back, or lean against anything that presses against the area. I know as I recover that pain will decrease as well.

Now to my sanity level.... I'm going crazy lying on my couch all day. I can't wait until I'm able to sit up long enough to get back to work. I'm going to talk to my boss about working from home starting tomorrow. I think if I have something to occupy my time a little bit it will help avoid my impending craziness.

For my good friend, Pat

2008-11-18T06:01:00.002-05:00

It's been snowing here of late. I got up at about 5:00 this morning, and this is what it looked like outside my window. My good friend Pat rarely gets to see snow so I figured it might be a nice treat for her to see this, so this picture is for you, Pat. Please forgive the blurriness of the image. I'm still quite weak and my camera isn't the best.

10 days down...

2008-11-16T14:41:00.002-05:00

This is the first time I've been able to post since the surgery. It went well, and I am now the proud owner of a Spinal Cord Stimulator :)

There is good news and bad news associated with the latest surgery. We'll start with the good news, because I like to be optimistic. My pain levels are so low right now. I couldn't have imagined this kind of relief from the RSD pain. My pain level is down to about a 2 right now.

Then comes the bad news.... this is not meant to scare anyone away from SCS. I hope it will enlighten anyone considering a permanent implant, though. Keep in mind that everyone's experience will be different.

I didn't feel entirely prepared for the post-op experience. I knew it would be painful, but not as bad as it was. The first day I fainted from the pain twice. The doctor didn't warn us that this might be a problem, so the second time it happened (at 1:30 in the morning); my husband was on the phone to talk to my doctor. I have to admit this was terrifying. The doctor assured us that the fainting was due to the pain, and was nothing to worry about. I just needed someone with me 24/7.

By the afternoon following my operation, I was beginning to get sick from the Vicodin I had been put on. I was vomiting from it, but was unable to lift my head, so that was quite an experience. We called the doctor and asked what we should do, and he prescribed morphine to get me through the pain. Within a day I was vomiting from that as well, so I stopped taking the pain killers. That definitely was not conducive to pain relief.

3-4 days after the surgery my back started feeling a little better. The pain levels had gone down to a level I could at least tolerate. Then the headache started. The doctor says it may last from a few days to a few weeks. It’s still not gone, but I’m beginning to feel better.

My back is still sore. I can’t sit for very long before it gets too sore and I need to lie down. I can’t wait until this pain is gone. It shouldn’t be long now, although the doctor wants to write me an excuse from work for the next month. He said if I feel ready to go back sooner he can write me a release, and I’m sure that will happen.

So all that having been said, I feel the need to say that I do think it is well worth it. I’m ecstatic to be able to walk without a limp. It’s amazing. Before long I’ll be back to normal, but I won’ have to deal with the insane pain I was feeling before the operation. I can’t wait.

Today's the day

2008-11-06T05:46:00.003-05:00

I wanted to sleep in this morning, becuase of the whole no eating after midnight thing. At 3:30am the cat knocked a bunch of stuff over and scared the crap out of me.... I'm now fully awake.

I have to admit.... I'm terrified of the week ahead of me. I'm almost 100% sure it's going to be worth all the pain, but I'm definitely not looking forward to the next 7-10 days. I almost don't want to go through with it, but I'd never forgive myself if I didn't take this opportunity.

The day before D-day

2008-11-05T16:30:00.003-05:00

So tomorrow is D-day. I went in for my appointment today. I decided on the rechargable battery. He told me that if I went with the nonrechargable I'd most likely only make it about 2 years before they would need to replace it, so yeah.

He explained the procedure to me, and then asked if I had any pain killers at home. I told him I have some Vicodin and he asked if I had enough to last a week. I told him I wasn't sure and he said I should check and let him know tomorrow when I get there if I need another perscription, because I will definitely need to take them for 7-10 days.... then he warned me that I will be in severe pain for at least 3-4 days after the surgery. Oh yay! This will be fun!

At least it's almost over, though. I can't wait for my pain levels to decrease again.

I'll update as soon as possible after the surgery. It may take a while, though.

I got an appointment

2008-11-04T22:55:00.003-05:00

The doctor's office called me today. They got approval from my insurance company to implant the permanent SCS :-D I have an appointment for this Thursday (as in the day after tomorrow). My doctor, the rep. from the company, and the surgical center all happened to have an open appointment, so they put me in.

When I had the trial removed, the doctor told me I would need to wait at least 3-4 weeks for the permanent. He said my back would need this amount of time to heal. It's only been 2 weeks. The receptionist said he gave it the okay, though.

I have a pre-op appointment with him tomorrow. I'm going to verify that the timing isn't an issue, becuase I have to admit I'm a little worried about it. He was very clear from day one what the time-frame would be.

I'm so excited. I can't wait until my pain levels go back down. These last 2 weeks have been terrible for my pain.

It's been a while

2008-11-03T20:20:00.002-05:00

So I haven't posted in a while. I figured I might as well post an update. I’m still waiting for the doctor to call me back. They are waiting for approval for the permanent SCS from my insurance company. I'm waiting impatiently. I can't wait until I can finally get rid of this pain.

It has snowed on and off for about a week and a half now. In between days that it's snowing, it's between 50 and 70 degrees. The fluctuating weather is wreaking havoc on my leg. It hurts terribly right now.

The office is also very cold right now. It's a good thing I keep a blanket in my desk just in case I need to keep my leg warm. All I have to prop my leg up, however, is my trash can. It's not very friendly to my legs. That's something I'll have to continue working on.

I was thinking about how working is going to be during the 3 months that I have to keep my spine straight. My chair is not very conducive to having a straight spine. That's one of the main reasons I didn't work during the trial. It's a very comfy chair, but not if you need support for your back. I should probably start looking into finding a new chair tomorrow.

One last thing I need to address: Someone posted an anonymous comment to me asking for me to help them find a doctor in the Albany area. In case that poster is reading this, I wanted to let you know that I did try to contact you. I tried sending you emails from various accounts and all my emails were returned to me. If you are still looking for help, I can be reached at LMT at USARSD dot org. Email me and I will reply. Maybe it will work that way.

Removal/The pain is back

2008-10-23T20:15:00.004-04:00

One thing I learned through the trial: My posture sucks horribly. I need to work on that. The slightest of movements would change either where I felt the stimulation, or the strength of the stimulation. When I slouch (as I've been in the habit of doing my entire life), it increases the strength of the stimulation.

UGH! My doctor wasn't very gentle about the way he removed the sutures to remove the stimulator. He just took a needle and plucked at the sutures until they frayed and broke and then kind of just pulled them out. It wasn't the most pleasant of experiences.

He showed me the lead that was in my spine. I thought it was pretty cool. So my back hurts again, but only because of how the doctor pulled the sutures out. It didn't hurt at all when he actually pulled the lead out. After he removed the stimulator, we discussed having the permanent one implanted. My husband and I have decided that I'm definitely going to do it.

After that, my doctor left and the company rep came in. He showed me the battery and the remote that I will have, and explained the procedure to me. I'll be going in for the implant in about 4 weeks. It will be an outpatient procedure, so I will be able to have it in the same hospital as the trial.

They are going to make a small incision in my lower back and place the leads. They then fish wires down to another incision in my upper buttock (they will have to clear out some tissue there for this), where they will place the battery. They're going to use the x-rays from the trial placement to help them place the permanent stimulator, so it should be pretty easy to get it in the right spot.

I'm going to go with the rechargeable battery. That means they will have to open the incision in the buttock once every 6-10 years (according to the rep, with the settings I used it would most likely last 8 years) to replace the battery. He said unless there is a problem with the leads, they wll not reopen the incision in my lower back.

I left the office with a slight buzzing sensation in my leg still. It was about 40 degrees fahrenheit out, and the cold was definitely affecting my pain levels again. Within a few hours of being home my CRPS pain was back with a vengence. I can't wait until I have the permanent one implanted.

And so the trial comes to an end...

2008-10-23T06:11:00.003-04:00

I'm having the stimulator removed today at 10:50. I have decided to go with ther permanent one. I've gotten some amazing relief over the last week, so I think it's worth it.

I'm so excited to have it removed, though. My back has gone from really painful to extremely itchy. I want to scratch it so bad, and in a few hours I may be able to do just that... and take a shower, which is really what I'm looking forward to.

Over the last week I have narrowed it down to 2-3 programs that I like. The company rep said I might not be able to fully narrow it down until after I've had the permanent for a while. I'm so excited at the thought of seeing permanent relief :-D

Day 4

2008-10-20T20:16:00.002-04:00

Today is the fourth full day that I have had the stimulator. The RSD pain is still decreased :-D

My back pain is still pretty bad. I think I may have overdone it today. I was feeling somewhat better this morning, so my husband and I went to my office to pick up some work, an then went to visit his sister for a little bit. We were gone for a total of about 3 hours (although not continuous time). Sitting in the car for the hour-hour and a half was pretty bad, and then I had to sit on the edge of a chair for an hour, as well as stand for about 30 minutes.

The good part to all of this is that normally my RSD would have flared considerably by this point. Those pain levels are still quite low.

I hav been playing around with the settings on the stimulator. I really think this could help me.

The operation

2008-10-18T08:03:00.002-04:00

The pain in my back has subsided enough that I think I can post about the operation.

I got there at 1:00 PM on Thursday, October 16. I got there and they asked me to fill out a bunhc of paperwork about my health history, etc. I found that a bit wierd, since they had called me about all that stuff on Monday. I filled it out and handed it to the nurse who was to bring me back to my pre-op room.

We get into pre-op and she looks at my wirst and asks what I'm allergic to. I told her that I had seasonal and environmental allergies, but beyond that none. She asked a bunch of questions about allergies and then said "well they should have given you a blue wrist band instead of a red one." That kinda wierded me out too.

They got me all set up and my husband came in and stay with me while the doctors came in and explained the procedure. Come to find out they had my paperwork mixed up with someone else's so they had to have me re-sign a bunch of papers and fill them in again.

My husband left and they started wheeling me into the operating room. I have to admit I was terrified. I wasn't looking forward to the pain I knew I was going to have to endure. I get into the operating room and move over onto the operating table, face down. That's not the most comfortable position when you have an oxygen tube hanging out of your nose.

I remember the anesthesiologist putting some opaque, white fluid into my IV, and thinking "OUCH! couldn't you have pushed that in a bit slower?" and that is it. The next thing I remember the doctor was saying "That's the fastest this has ever gone" and the anesthesiologist assuring me that was a good thing. During the operation they gave me a light sedative and they woke me up and put me into a deeper sleep as needed. I was in that room for no more than 20 minutes, because 30 minutes after my husband walked out of the room they were calling him back in to sit with me.

Immediately I noticed that my RSD pain had decreased. My pain levels were about 60% less than they were when I went in to the pre-op room. The rep. from the stimulator company worked with me to find out which programs I should try over the week. I start playing with them, and recording what I like and dislike about each, on Monday.

So to the good news (keep in mind this is only after a couple of days):
I went in with CRPS pain that I rated at an 8-9/10. I came out with a pain level of 4/10.
I can touch my leg without causing myself any extra pain.
The color in my right leg has returned to normal.
The pain in my leg doesn't seem to increase with the cold.

I have pics of me pre-op and of my bandaging on my back. When I find the cable for my cell phone I'll post them here.

Post-op update

2008-10-17T05:46:00.003-04:00

I'm home from the surgery. My back is really sore, so I'm not moving much. This post will be short as a result. The doctor said by Saturday night the soreness in my back should be gone, so I anxiously await Saturday night.

So far my RSD pain has decreased by about 50%. If this continues, I am going to have the permanant stimulator implanted.

I'll write more later.

The big day

2008-10-16T07:32:00.002-04:00

T-minus 5 hours and 30 minutes until I have to be at the office for my operation. I had my "last meal" last night. It was delicious. My husband made chicken breasts with bacon and melted cheese on it. Mmmmm.. soo good. I was allowed to eat until midnight last night and I can drink clear fluids (water, apple juice, black tea, or black coffee) until 10:00 this morning.

I got my hair cut last night. I got 6-7" taken off. It's really short now, but I figured I might as well make my last shower for a week mean something. LOL! Sponge baths for me from here on out :-(

They want me to bring my inhaler in with me. I've been searching for it and I can't find it (like I told them, I haven't used it in months. I honestly think the last time I used it was last winter). I'll have to call in a few hours to find out what I should do. I'm pretty sure even if I found it it would be expired anyway.

ARGH! I'm so hungry (you know only because I can't eat)... more water for me.

Getting nervous...

2008-10-15T05:29:00.002-04:00

I get the trial spinal cord stimulator inserted tomorrow. I'm starting to get really nervous. I found the spinal blocks to be incredibly painful. When I had the block in epidural form, it hurt the entire time it was in (come to find out they were pumping way too much medication into my spine at once). When I started seeing a pain doctor again, I swore I'd never get a block again. Now this?

I am extremely excited at the prospect of decreasing my long term pain levels, but the procedure itself scares the hell out of me. It's like my wedding. I couldn't wait to be my husband's wife, but the wedding itself terrified me.

The ends justifies the means...

Walking is bad.... walking is bad....

2008-10-12T07:47:00.003-04:00

My husband and I went to a beer festival with his friends yesterday. We were walking around for about 3 hours. I haven't done that in so long. It was tons of fun, but I forgot how much it would hurt. By the time we were 3 hours into it I had to sit down. We grabbed some food, sat and ate. The members of our group trickled in and out, getting themselves more beer smaples, but I just sat. After we ate, my husband decided it would be best for us to leave (I love how careful he is about my condition). By this time my pain level was really high again. I hope it calms down by tomorrow. The pain levels are still quite elevated. Hopefully by tomorrow morning they will have decreased some.

Work & Stimulator

2008-10-10T19:12:00.004-04:00

I work full time. Normally this wouldn't be a big deal, but add in that I sleep an average of 2 hours a night (always in 10-20 minute increments) because of the pain, and you might begin to see why full-time employment is not an easy thing to endure when you suffer from CRPS. By the time I get home from an 8-hour day at work, I'm exhausted. I usually get home and crash on the couch until it's time to go to bed. By Friday I'm completely exhausted. I generally spend weekends crashing on the couch, trying to recoop from the work week.

Well, it's Friday. I made it through yet another week.

Next week I have my trial stimulator implanted. The stimulator is supposed to kind of confuse my brain. It will bombard my sympathetic nerves with electric pulses. The doctor says I will be exchanging the pain sensation to another, which I may or may not like, and will definitely need to ge used to. Nothing can be worse than the pain.

I'll update my progress here.

What is CRPS?

2008-10-10T00:59:00.005-04:00

CRPS is complicated, and there's not much known about it. The symptoms will vary between people, and what works to treat one person will not work to help another.

CRPS was first discovered during the Civil War. Doctors on the field were faced with bullet wounds that, although healed, still caused soldiers severe, burning pain disproportional to the injury. It was originally termed Causalgia, meaning "burning pain." In fact, some still use this term today.

CRPS has gone through a number of name changes during it's history. Some of them include:
Complex Regional Pain Syndrome (CRPS Types I and II)
Reflex Sympathetic Dystrophy (RSD)
Reflex Sympathetic Dystrophy Syndrome (RSDS)
Causalgia
Sympathetic Maintained Pain Syndrome

CRPS is characterized by a burning pain that is dispropotional to the injury that caused it. The pain can be increased with stress, motion, touch (even the slightest touch can cause severe flare ups of CRPS), breezes, cold, etc.

Common symptoms of CRPS include, but are not limited to:
Burning and/or gripping pain
Skin changes (often the affected limb will because a deep red, blue, or purple color. Also, extremely dry, darker patches of skin often times crop up on the affected limb.)
Increased hair growth on the affected limb
Nails becomming brittle and breaking more easily
Limbs feeling cold to the touch
Changes in bone growth

Secondary symptoms include, but aren't limited to:
Depression
Insomnia

So what is causing the pain? This is a subject that's up for debate. One possible explanation is as follows: There are many types of nerves in the human body. Sympathetic nerves carry signals toward the brain, whereas somatic nerves carry signals away form the brain. My doctor explained it to me by saying that at some point the body gets confused. The Somatic nerves somehow get rewired and begin to send signals to the brain. The brain doesn't know how to comprehend these signals, so i translates them into pain. The sympathetic nerves then continue the pain cycle, and it never ends.

I have also heard theories relating to electrolyte balance in the body.

No matter what it is that's creating the pain, there is no physical reason for the pain to be there. It's a matter of the sympathetic nervous going haywire in some way.

Alternative Treatments

2008-10-10T00:49:00.002-04:00

When the blocks stopped working and the epidural was out, we decided to see if holistic practices might help. We tried a number of them. The following are the most memorable:

I went to a Reflexologist for a period of time. She was great. The work she did not only helped a bit with the pain, my asthma, and allergies, but she also inspired me to get my massage therapy license (a license I hope to be able to use someday). I would recommend this treatment for a good number of conditions, but only if you can find a well trained, and licensed if that's required in your state, Reflexologist.

I also tried a therapy known as cold laser therapy. We kind of figured it was a crock to begin with, but ANYTHING to get rid of the pain. Well, I gave the therapist the benefit of the doubt for a number of treatments before deciding this wasn't for me, either.

Being a massage therapist, I learned the importance of meditation. Sometimes meditation will bring my pain level down. Sometimes it doesn't, but it always decreases my stress, which in turn helps with the pain.

The Early Treatments

2008-10-10T00:40:00.002-04:00

We started off trying to control my pain with various anti-depressants and anti-seizure medications. I also started getting spinal blocks once a week. Neither seemed to help much.

We gave the blocks 2 months. The first block worked for a few days. It got rid of much of the pain. The second block worked for a slightly less period of time, and so it went until finally they stopped working. After the 3rd block that didn't work, it was time to move on to more drastic measures.

My doctor recommended an epidural with a stronger concoction of the spinal blocks. It was to be inserted, and then stay in my spine for a week. A few hours after I got home it had already broken. It broke, and I was brought to the ER 4 times before it was removed. I had the epidural placed on a Friday afternoon. By that Sunday my doctor had to remove it. They had too much fluid being pumped into my spine, and it couldn't all be absorbed so it was leaking back out the epidural site.

This was the point where my doctor said to me there was nothing he could do for me anymore. I was 17 years old, and any further treatments were unethical to perform on someone under the age of 18. He gave me a bunch of prescriptions and sent me on my way.

By the time I was 18, and had left for my first semester of college, I was taking 21 pills a day just to try and control the pain. It was too much and I gave up on them.

The beginning of the pain

2008-10-10T00:21:00.002-04:00

The doctors aren't exactly sure how I ended up with CRPS. When I was in high school, I sprained my right ankle a number of times. The last time I inverted my ankle (rolled the foot inward), heard a loud pop, fell, and almost passed out from the pain. This was in May of 2001. By February of 2002 I was undergoing an arthroscopic surgery to remove soft tissue wedged in the right ankle joint. The debate is over whether it was the initial injury or the operation that caused my CRPS. The jury is out on this and may never return.

After the operation, I got an infection at the surgery site. The surgeon was slow to put me on anti-biotics, so that probably didn't help my situation. By the time they removed the cast, the infection was so bad I was put on a heavy course of anti-biotics to get rid of it.

I was slow to walk after the operation. The surgeon said there was no reason I shouldn't be able to walk 2 weeks afterwards. 2 months later he, myself, and my physical therapist were all baffled. Finally the surgeon sent me to a pain clinic. That is where I met the doctor who finally gave me a reason for the pain. He only needed to compare my right leg to my left for a few seconds before telling me he knew what the problem was.

It was a huge relief to finally get an answer. We were so hopeful. Little did we know that a diagnosis was only a small piece of the fight I had ahead of me.

To this day, on a good day I awake in the morning with a pain level of 6-7/10. On a bad day my pain levels will be as high as a 10/10. This pain level, however, can fluctuate by the second.

Intro to Me

2008-10-10T00:08:00.000-04:00

This is my first ever blog, so bear with me. It might take a while to get used to this whole thing, and I can't promise I'll be very regular with my postings.

So why did I start a blog? I was diagnosed with a chronic pain condition known as Complex Regional Pain Syndrome (CRPS), or Reflex Sympathetic Dystrophy (Syndrome) (RSD(S)), in 2002. By the time I was diagnosed I was already in the final stages. I have been pretty bad about tracking my treatments (I used to have a notebook filled with pain levels, treatments, and just the entire saga in general, but it's MIA), and I figure this might help me do that. I would also like to help other people who may have the condition (and may or may not know they have it).