Hi everyone, hope you enjoyed your Christmas. I am excited to share that since my last post I had one of the best weeks since the on set of this terrible condition of PNE in Feb. 2011. Unfortunately it was followed with the worst week and half since returning home from Turkey. Tomorrow marks 12 weeks from having nerve decompression surgery in Istanbul, and December has proven to be my big turn around month. I am feeling back to my pre-op self, and I have even had some of my best days since developing this condition.
Well let me share the details of my best week. It started Sunday afternoon, I sat on the floor, yes, you read right, "SAT", no laying on my stomach. I spent about an hour cleaning the dusty fireplace out so we could get the fire going. Wasn't too bad sitting there, however when I got up, oh boy did I feel it. I created a flare, the good news was that when I got up the next day, everything was calmed down. So calmed down that as I went through the day I had noticed that most of day had gone by with very little pain. I was amazed that first, my flare didn't last for a couple of days like it would have done before surgery, and also that my pain levels seemed to stay down. So, now it's Tuesday and my daughter has a Christmas concert choir performance. Usually by night the pain has reached it's highest level, but just like Monday my pain stayed really low again. Where I was feeling most of my pain was in my foot. My foot still gets irritated from wearing a shoe, and it had been a long afternoon of walking around in my shoe. When I put my shoe back on to go over to the middle school, my foot was screaming at me with big shocks of pain. Once I got there I thought I'd try to sit, so I could kick my shoe off to get some relief. I was surprised that I had made it through most of the program before I started to get uncomfortable. There were only two more songs needing to be sung, and then the program was finished. I couldn't believe it, I made it almost a whole hour. Between my oldest son and my daughter, this was my fourth concert choir program I had attended in a year, but this was the first one I was able to sit through. Not completely pain free, but definitely manageable. My husband had his annual work Christmas party on Thursday night, and I was feeling pretty good once I arrived, even after a 35 minute drive. I sat during dinner and never once thought "I really need to get up, I can't do this a second longer". Not bad, right? It seems I am making some progress. Some other things that made my week so great, I scrubbed a couple of bathrooms and vacuumed. I could never get very far into a bathroom cleaning before a flare would kick in, not this time. I was on my last step of wiping the mirror, when I realized there had been no change in my pain level. I waited for it, and even sometimes flares can come on the next day, but it never came. And, when I vacuumed, the flare, wait for it, wait for it, IT NEVER CAME!!! I was 9 weeks post-op and completely shocked with what was happening.
Here's where the good week turns bad. It is Saturday, and I still had a lot of Christmas shopping to do. I know, I know, cutting it a little close, but hey, give me a break, I had just finally started driving again just one week prior. Anyway, me and my husband had planned to go out and get it all done. We left at 6:00 and got home at 11:00. Five hours proved to be a little too long, not only was my foot fired up, but my in-betweens were angry as well. I went to bed thinking, oh man, what have I done? When I got up the next morning everything was still pretty annoyed. It was Sunday, which means church. This would be my first Sunday going without my leg brace. Only problem, wearing my Sketcher's to church was not exactly appropriate. I struggled finding a shoe that I could wear, and I refused to put on my leg brace, after all, I had gone 9 whole days without it, and I was so over it. Only minutes after arriving at church I was ready to rip my shoe off. I chose to sit with my family even though my pain was higher than the last few days. I thought maybe since I had gotten through the concert choir program and a Christmas dinner, maybe I could give sacrament a try. I did do better then I thought but after 40 minutes I was done. I looked at the clock and I thought 30 more minutes, I can do this. That thought turned out to be a wrong choice. I dealt with a painful flare the rest of the day, pain so bad I just wanted to go to bed. This carried over for the next few days, and by the time I had gotten to my PT appointment for pelvic pain, I was not doing so great. PT unfortunately made things worse, I came home in more pain, and I am still waiting for everything to calm back down.
I am glad that I was able to experience a low pain level week, but clearly I over did it somewhere. When you feel good it is easy to get carried away, and I think testing my limits is good. Funny how I feel like I can conquer the world when I feel so good. And, how fast pain can take you down, and the desire to do anything vanishes. I just need to find the right balance and this can be tricky at times. The flare is coming down, but I am not back to where I was a couple of weeks ago. It seems that I was getting through my days and getting more things done around the house than ever before, all while keeping the pain levels down. But, sitting is still an issue. I'm not worried though, on the nerves timeline I'm still in the beginning stages, and I think sitting will come with some more time.
As far as my foot goes, it is still showing improvements. After 10 weeks of dealing with excruciating pain, I can safely say my worst days are behind me. Constant pain is long gone, my only issues now, are wearing a shoe, showers, occasional pants or pajama bottoms resting on top, and something as silly as the sheets while trying to sleep. I only use the ice machine a couple of times a week, I am at a point now that it is more annoying to deal with the cords and cuff than the actual pain. When I first go to bed it's not too bad, but after some time I start to feel the tiny shocks coming on. I have learned I can just stick my foot outside of the covers and everything will calm down. At the end of this week the ice machine is due to get picked up, and I can happily say I am ready to finally part with it.
Over all with a flare and all, I feel much better than I did a year ago. And I am looking forward to what this New Year will bring.
Monday, December 31, 2012
A New Year And New Hope
Hello to all my friends and family. I hope everyone had a wonderful Christmas. Christmas day couldn't have been better, fresh white snow covered the ground, the kids slept in until just after eight, and grandparents stopped by to visit, eat yummy food, and play a little too. Tomorrow starts the New Year, so good bye 2012, and hello 2013.
Last year started out with so many unanswered questions, I felt so lost in the world of PNE. It seemed no matter which road we went down we found ourselves more confused and frustrated. Nothing made sense and the unanswered questions just grew and grew. Though one thing for sure was, that I was very determined to beat this. I did not want to accept the couple of answers we were getting, and I was not going to give up until the right answer came along. At first, I didn't know how long I'd need to wait, but after a lot of patience and prayers the right answer finally came around in the middle of the summer. I discovered that the surgery I needed was available through a laparoscopic approach, only down side, the surgeon that offered this was located in Turkey. Even though we traveled so far, everything about our decision felt right, and for the first time I felt a sense of relief, and that everything was going to be okay. The end of this year has been filled with hope and a new appreciation of life. What a difference one year can make. I can already tell this new year is going to be filled with lots of accomplishments and hopefully some little miracles too.
So many things that were taken for granted two years ago, will be given back to me as this new year moves forward. So, with more patience being the key, here are some of the bigger things I hope will happen for me. Sitting through three hours of church, going to the movies again, taking a road trip, making it through a promised, and now overdue Disneyland vacation, and the ability to reconnect with my husband (in a behind closed doors kind of a way). I know, a shocking last remark, and probably TMI, but unfortunately, it's one of the ugly truths of this condition. Of everything lost in dealing with this devastating condition, this is the one I personally struggle with the most.
So what do you think? Too much to ask of my damaged nerve? I really think with some more healing and regenerating time for the nerve, I am going to have a very memorable year, and in a good way. Everything is slowly turning around, and I truly believe this is going to be a year filled with new opportunities. I am looking forward to posting these accomplishment, and I hope you all stick around to celebrate my milestones.
Wishing everyone a Happy New Year! To a brighter year, filled with hope, happiness, and good health!
Last year started out with so many unanswered questions, I felt so lost in the world of PNE. It seemed no matter which road we went down we found ourselves more confused and frustrated. Nothing made sense and the unanswered questions just grew and grew. Though one thing for sure was, that I was very determined to beat this. I did not want to accept the couple of answers we were getting, and I was not going to give up until the right answer came along. At first, I didn't know how long I'd need to wait, but after a lot of patience and prayers the right answer finally came around in the middle of the summer. I discovered that the surgery I needed was available through a laparoscopic approach, only down side, the surgeon that offered this was located in Turkey. Even though we traveled so far, everything about our decision felt right, and for the first time I felt a sense of relief, and that everything was going to be okay. The end of this year has been filled with hope and a new appreciation of life. What a difference one year can make. I can already tell this new year is going to be filled with lots of accomplishments and hopefully some little miracles too.
So many things that were taken for granted two years ago, will be given back to me as this new year moves forward. So, with more patience being the key, here are some of the bigger things I hope will happen for me. Sitting through three hours of church, going to the movies again, taking a road trip, making it through a promised, and now overdue Disneyland vacation, and the ability to reconnect with my husband (in a behind closed doors kind of a way). I know, a shocking last remark, and probably TMI, but unfortunately, it's one of the ugly truths of this condition. Of everything lost in dealing with this devastating condition, this is the one I personally struggle with the most.
So what do you think? Too much to ask of my damaged nerve? I really think with some more healing and regenerating time for the nerve, I am going to have a very memorable year, and in a good way. Everything is slowly turning around, and I truly believe this is going to be a year filled with new opportunities. I am looking forward to posting these accomplishment, and I hope you all stick around to celebrate my milestones.
Wishing everyone a Happy New Year! To a brighter year, filled with hope, happiness, and good health!
Wednesday, December 12, 2012
Surgery Progress Dec. 12th 2012
Two weeks has gone by and I'd have to say I am starting to feel better and do more and more around here. I am getting through the whole day without feeling the building pressure and deep ache, and even at night I can manage to make it through until bed time. My days are full between taking care of my family and most importantly myself right now. I am glad that for the most part I am up and involved with my family.
What a busy time of the year, although I enjoy this season, I find that I have too many things to do for Christmas. On top of all the Christmas prep, I am also spending a lot of time at physical therapy. Not just one, but two PT's, one for the foot and leg, and the other for my PN issue. This has been taking up a big chunk of my week. But, enough of the small talk, I have so many things to share...
On my last update I was just about to get started back up with physical therapy for pelvic floor and PN issues for the first time since my surgery. I was very anxious for this appointment, because no one really knows the pelvic floor like my PT. I knew she would be able to distinguish any changes good or bad. Like always, the first appointment is an evaluation to determine the plan for the next few month's. I had went in for an evaluation prior to surgery so we would have a base line of of my condition, and a way to compare the pre-op and post-op concerns. Before surgery, even though I had worked with this PT for over 4 month's, some of my bigger issues never responded to the PT. And actually, sometimes PT would create a big flare and I would feel worse for a couple of days. We had finally reached a point where there was not much more we could do, with no improvements in certain areas I stopped PT. However, at my first appointment after surgery my PT noticed a big change in some of the problem areas. All I can say, is that my PT was impressed with the areas of concern, she seemed hopeful and we were both all smiles. I guess time will tell, and in the meantime our focus will be on minimizing the scar tissue that forms naturally after surgery. Scar tissue can create new issues later down the road if not treated properly, so this is a very critical part of my recover and healing of the nerve.
Big news on my foot and leg. If you remember, the last time I posted, my foot wouldn't even budge, my toes or foot physically could not lift up while standing straight and trying to balance on my heel. I was so shocked, after just a couple of days of practicing my foot finally flexed up and lifted up off the ground, it wasn't very much but it was definitely coming up. And, by the end of that week, which I just happened to be at my physiatrist follow-up appointment, (and of course I had to show off my new regained motor function.) Well, then something better happened, I wasn't even expecting this, but he had me try and just flex the toes up while standing straight. I had been trying to do this as well with no luck, and to my complete surprise it happened! I wouldn't call it a lift but more of just a slight movement of my toes. We both said "whoa did you see that"! at the exact same time, it was funny and also very exciting. I had a PT appointment later that day and I couldn't wait to show him what I could now do, and all in a weeks time. PT has been filled with one accomplishment after another, all in about two weeks of time. We have shared lots of high fives and big smiles. Every day my foot would flex higher and higher, and my toes would just follow behind within days. Now that I could control the way my toes flexed I could try putting a shoe on. There was two issues with getting a shoe on, first the top of my foot is having a lot of hyper sensitivity issues, meaning nothing could touch it without creating crazy pain. Second, when I would try and put my foot in a shoe my toes would automatically curl under, and no matter how hard I tried I could not get my toes to straighten out, this makes wearing and walking around in a shoe very difficult. So, now that I had regained the motor function back in my foot, my PT said to bring my right shoe in at my next appointment.
Last week I was able to get my shoe on, and for the first time since Oct. 8th I was walking around in shoes on both feet. YAY!!! Now, my right foot obviously feels very uncomfortable with a shoe on, but I'd say that the straps that hold my leg brace on are very bothersome too. Wearing my shoe feels very prickly and feels like I'm wearing a size to small, the shoe feels like it's on way too tight even though I know it's not. I can only tolerate the shoe for so long before I need to rip it off. It's a good start and soon I should adjust to this new sensation. After a couple of days of learning to get around in my shoe, I told my husband that I think I am ready to give driving a shot. He didn't even bat an eye, he said okay, and threw me the keys. It was such a great feeling to be back in the drivers seat and have the ability to drive around again. The first couple of drives my leg would tire out fast by pushing on the brakes at a stop light, so I would just put the car in park, but already after a couple of days it's not even an issue. Getting my independence back changes everything...I am so happy!
Remember my beloved ice machine? Well my four weeks was up on the 7th of Dec. There was no way I was letting my ice machine go. I called the company and said "PLEASE can I have it a little longer, I still need it"! After a few phone calls to my doctors office and our insurance, I now have it for another 4 weeks. Whew! I'd much rather manage my pain with ice cold water circulating around my foot then all those wacky nerve medicines any day.
Everything is turning around and all I have to say is I am so HAPPY, HAPPY, HAPPY!!!
What a busy time of the year, although I enjoy this season, I find that I have too many things to do for Christmas. On top of all the Christmas prep, I am also spending a lot of time at physical therapy. Not just one, but two PT's, one for the foot and leg, and the other for my PN issue. This has been taking up a big chunk of my week. But, enough of the small talk, I have so many things to share...
On my last update I was just about to get started back up with physical therapy for pelvic floor and PN issues for the first time since my surgery. I was very anxious for this appointment, because no one really knows the pelvic floor like my PT. I knew she would be able to distinguish any changes good or bad. Like always, the first appointment is an evaluation to determine the plan for the next few month's. I had went in for an evaluation prior to surgery so we would have a base line of of my condition, and a way to compare the pre-op and post-op concerns. Before surgery, even though I had worked with this PT for over 4 month's, some of my bigger issues never responded to the PT. And actually, sometimes PT would create a big flare and I would feel worse for a couple of days. We had finally reached a point where there was not much more we could do, with no improvements in certain areas I stopped PT. However, at my first appointment after surgery my PT noticed a big change in some of the problem areas. All I can say, is that my PT was impressed with the areas of concern, she seemed hopeful and we were both all smiles. I guess time will tell, and in the meantime our focus will be on minimizing the scar tissue that forms naturally after surgery. Scar tissue can create new issues later down the road if not treated properly, so this is a very critical part of my recover and healing of the nerve.
Big news on my foot and leg. If you remember, the last time I posted, my foot wouldn't even budge, my toes or foot physically could not lift up while standing straight and trying to balance on my heel. I was so shocked, after just a couple of days of practicing my foot finally flexed up and lifted up off the ground, it wasn't very much but it was definitely coming up. And, by the end of that week, which I just happened to be at my physiatrist follow-up appointment, (and of course I had to show off my new regained motor function.) Well, then something better happened, I wasn't even expecting this, but he had me try and just flex the toes up while standing straight. I had been trying to do this as well with no luck, and to my complete surprise it happened! I wouldn't call it a lift but more of just a slight movement of my toes. We both said "whoa did you see that"! at the exact same time, it was funny and also very exciting. I had a PT appointment later that day and I couldn't wait to show him what I could now do, and all in a weeks time. PT has been filled with one accomplishment after another, all in about two weeks of time. We have shared lots of high fives and big smiles. Every day my foot would flex higher and higher, and my toes would just follow behind within days. Now that I could control the way my toes flexed I could try putting a shoe on. There was two issues with getting a shoe on, first the top of my foot is having a lot of hyper sensitivity issues, meaning nothing could touch it without creating crazy pain. Second, when I would try and put my foot in a shoe my toes would automatically curl under, and no matter how hard I tried I could not get my toes to straighten out, this makes wearing and walking around in a shoe very difficult. So, now that I had regained the motor function back in my foot, my PT said to bring my right shoe in at my next appointment.
Last week I was able to get my shoe on, and for the first time since Oct. 8th I was walking around in shoes on both feet. YAY!!! Now, my right foot obviously feels very uncomfortable with a shoe on, but I'd say that the straps that hold my leg brace on are very bothersome too. Wearing my shoe feels very prickly and feels like I'm wearing a size to small, the shoe feels like it's on way too tight even though I know it's not. I can only tolerate the shoe for so long before I need to rip it off. It's a good start and soon I should adjust to this new sensation. After a couple of days of learning to get around in my shoe, I told my husband that I think I am ready to give driving a shot. He didn't even bat an eye, he said okay, and threw me the keys. It was such a great feeling to be back in the drivers seat and have the ability to drive around again. The first couple of drives my leg would tire out fast by pushing on the brakes at a stop light, so I would just put the car in park, but already after a couple of days it's not even an issue. Getting my independence back changes everything...I am so happy!
Remember my beloved ice machine? Well my four weeks was up on the 7th of Dec. There was no way I was letting my ice machine go. I called the company and said "PLEASE can I have it a little longer, I still need it"! After a few phone calls to my doctors office and our insurance, I now have it for another 4 weeks. Whew! I'd much rather manage my pain with ice cold water circulating around my foot then all those wacky nerve medicines any day.
Everything is turning around and all I have to say is I am so HAPPY, HAPPY, HAPPY!!!
Subscribe to:
Posts (Atom)