1 year Post-op Update

 Finally....A whole year behind me, I can hardly believe one year has passed...I made it!

        My one year mark couldn't get here fast enough, I have been anticipating this day ever since I woke up from surgery last year. I had high hopes and had envisioned almost a complete recovery by this time. Over the last couple of weeks my emotions have been all over the place. I'm feeling extremely grateful for the progress that has been made, yet I know there are obstacles to overcome that still lie ahead of me. It's a little bittersweet...I'm not exactly where I had hoped to be, but I'm so thankful I'm not where I used to be.
 
      It's hard to believe that a year ago my husband and I were in Istanbul Turkey for the one and only surgery offered of it's kind in the world. With everything I know today, this would still be my first and only choice for pudendal nerve decompression surgery. I have no regrets and I'm happy with our decision to travel half way around the world for this surgery. I knew deep down this surgery would lead me down a new road, a road full of hope, new beginnings, and endless possibilities. I feel extremely grateful for Prof. Tibet Erdogru's dedication and expertise with this rare nerve condition. I hope one day the option for laparoscopic pudendal nerve decompression surgery will become available in the United States as well as other countries in our world. I know surgery is not the answer for everyone who suffers with chronic pelvic pain, but I can only imagine how this advancement in medicine could impact the hundreds and maybe even thousands of people who are suffering with pudendal nerve entrapment or PNE.

      Looking back over the last few months I've had many ups and and even a few downs. Although at times I've dealt with some set backs, I've made progress, and to my surprise I even celebrated some major milestones during this last year. Overall I'm doing much better than I was a year ago, and even 6 month's ago for that matter. My progress may seem slow at times, but it's starting to add up, and is still continuing...which I am so thankful for!
 
     In the beginning (over two years ago), my experience with PNE put me on a path of one devastating let down after another. Just as I thought things couldn't become any worse, life would prove me wrong and come along and knock me down at every turn. I thought I would never enjoy this life again, I felt robbed of so many things, I can't even begin to describe the intensity of despair I felt as my weeks turned into months. I began questioning my value and worth, I was unsure if I could carry on. The physical pain was one thing, but even more so was the anguish and heartache that followed. I was so devastated and heartbroken, it was all I could do to look in the mirror at myself, all I could see was this sad, broken person starring back at me. I hated what I had become, the pain had practically consumed every little piece of me, and was overshadowing all that I had ever known, desired, and wanted.... all that I was.

     Pain and sorrow has a way of blinding us from all the things that are good and true in this world. I was lost and I needed to find myself through the dark shadows of PNE. I didn't want PNE to define me as a person, I knew there was so much more to me than PNE itself. It was up to me to look at this experience differently, once I started to focus on the finer things in my life, I began to find the happiness and joy this world could offer to me. It took some time, but little by little I began letting go of what had been lost to this devastating condition and began to see that there was so much around me to be thankful for in my life. Once I realized how truly blessed I was, I turned the corner, and life no longer seemed so dim and difficult. Feeling grateful for even the smallest of things restored my hope and hope changed my entire outlook.  Despite the extra challenges and burdens, I've managed to find hope when hope seemed lost, and I've learned that life doesn't have to be perfect to be happy. I have come a long way,  just as I have been physically healing this last year, so has my spirit and mind. I don't talk a lot about my spiritual progress and experiences, but it has been equally as important for my healing, if not more. I have a few drafts written up that details my spiritual progress and growth, I'm just trying to work up enough courage to post them. I guess stayed tuned...I might surprise myself and surprise you too.
 
So are you wondering where I'm at in my recovery at this point?

     I have my own thoughts and opinion of where I'm at, but I was curious what my husband would think about this question, so I asked him. His response was 30%-40% improved, honestly he wasn't that far off from what I was thinking, it was a fair answer. Then I wanted to get my physical therapists input on my recovery, after all she has been working with me for close to a year, and her opinion was also important to me. Her response really shocked me, she didn't even have to think about it, she quickly answered 75%. My jaw dropped wide open and I said "wow, really? You really think I've made that much progress?" She shook her head up and down and said "yes." I didn't realize we weren't on the same page, and of course I  asked why she felt that way, because I didn't feel like I had gotten quite that far in my recovery yet. In my opinion I feel like I'm somewhere between 40%-50% improved, so we discussed our opinions with one another and compared the differences. Because there is so much more to this condition than just the pain, we broke down my progress into specific groups, we came up with a new number that we both compromised on. We concluded that my "overall" progress is for sure 50% improved and is possibly pushing 60% at times. What a difference this has made in my life and with my family, things are starting to run a little more smoother around here and it's been really nice!

      The most noticeable improvement for me has been with my pain, my pain levels have decreased significantly. Probably the only way I can compare the pain in a way most of you can relate to is by imagining the difference between a headache and a migraine. For anyone that has ever suffered with a migraine you understand how debilitating this pain is, it's intense, you can't focus or think, noise, light, and movement magnifies the pain. I'm talking pain so bad that you have no choice but to lay down and you lose touch with everything that is going on around you. That's where I was before traveling to Turkey, spending a big part of my day in bed. Now, the only time I spend in bed is at night (just like a normal person). I get up and get through the entire day and can do most day to day activities on my own without suffering the consequences of my actions. If I'm careful my pain stays fairly steady on most days, and I don't experience too many flares anymore. In this aspect I am 75% better, but my issues with sitting is not where I thought it would be, this still makes things challenging at times. I still avoid sitting as much as I can, if I sit for too long, sitting does increase the pain . Usually an hour is my tolerance, sometimes two hours...it depends on the chair. But, with that said I do find myself enjoying things that requires sitting more often. Like right now I'm actually sitting at the computer desk, I can sit on my couch again, I can go out for dinner and not scan the restaurant for bar height tables to stand at, I've been to the movies, I love sitting on the glider on my front porch again, and driving around with both bum cheeks resting on the seat, this makes driving so much easier.

     The issues I'm still working on and hope will change eventually is first, that my pain will continue to decrease and sitting will become more tolerable. Next, is my strength. Building my strength back up and getting my muscles to fire and work properly, so things like walking, climbing up and coming down the stairs, and moving becomes more natural and hopefully my speed will increase as well. Last, intimacy with my husband. I'll spare the details, but yes, this would be a huge milestone for us. I haven't completely given up on this, some small progress let's me know that there is still hope in this department. And if not, it's not the end of the world, I think we'll be okay.

     Physical therapy has been a huge key in my progress. I do not think I would be where I'm at today without it. It has become like a part time job for me, it's hard work and a lot of dedication, but thankfully it's paying off. I'm happy my PT has not given up on me, her willingness to work with me even when things seem to be moving slower than we hoped means everything to me. She is just as dedicated to my recovery as me, and is always just as excited about my progress as I am.

     I'm so grateful for each new day and all that life has to offer. I am truly blessed and so grateful for so many of my friends, neighbors and family. I appreciate so many of you who continue to check in on me and give me strength through your love, words of encouragement, prayers, fasting, and keeping my name on the temple prayer roll. Everyone has been so kind and understanding throughout this journey. I can't even begin to express how much this means to me...thank you from the depths of my heart. Sending all my love!

11 Month Post-op Update

11 months...wow it's hard to believe my 1 year mark is just around the corner!

     I'm doing much better since my last post. I'm not exactly sure why...? But, I'm not going to question it, but rather enjoy it while it last and hope it last for a little while...scratch a little while, how about forever...that sounds even better! The last week of August my piriformis muscle finally decided to cut me a break after 7 long weeks. I walked into PT feeling one way and walked out like whole a new person. For almost three weeks I've managed to go without one flare, I'm feeling extremely grateful, especially considering everything I had going on the last couple of weeks.

     By the end of August I was beginning to feel overwhelmed. My fourth child was turning eight on Sept. 1st, and turning eight is big deal around here. Ever since he could remember he knew eight meant getting baptized and becoming an official member of our church, The Church of Jesus Christ of Latter-Day Saints...i.e. Mormon. All I could think about was this pain that had been holding me up for the last few weeks and how in the world was I going to be able to prepare everything for this special day. Plus outside of this was his actual Birthday celebration, which this year included a friend party. Honestly, I thought we may have to postpone all of it, it just didn't seem possible to pull all of this off. I was having a hard time just walking, driving, and even laying down, how was I going to plan a Birthday Party, and prepare my house and all the food for 40 plus guest for our traditional luncheon after the Baptism.

     With a lot of prayer and patience, one perfect little miracle occurred. The Tuesday prior to his Birthday was the day I walked out of PT like a whole new person. Not only was I able to pull everything off, but I pulled it off without one flare. This was huge! I can't even begin to tell you how happy I am, and just how blessed I am feeling. I partied with eight year old's all day, cleaned like I haven't cleaned in over two and half years, I shopped and shopped, then I cooked and baked for two days, next I celebrated his special day with him and our family and friends. And the best part...I did all of this without one single flare...not even ONE!

     I am not by any means completely recovered and healed, but I am making good progress, it might seem slow at times, but all these little steps of progress are adding up. I'm still dealing with pain on a daily basis, but the pain has decreased significantly, especially if I limit my sitting. I'm a lot slower than I use to be, but I'm finally at a point in my recovery where I'm starting to work on strength. It feels good to be building my strength back up, as I become stronger, so should my energy and speed.

Things are definitely looking up...things are getting better...and everything is going to be okay!

10 month Post-op Update

     Well, I'm not going to lie...the last few weeks have been hard, much harder than I would have ever anticipated at this point in recovery.

     I've been struggling with increased pudendal nerve pain and now lower back/gluteal pain issues as well. Over the last two and half years the pudendal nerve has reeked havoc on many of the muscles in my pelvic area. As a way to protect the pudendal nerve my glute muscles stopped firing properly, and as a result my pelvic muscles are over worked and stressed, they have become very weak or atrophied. The glutes have essentially been inactive for a very long time and as I'm trying to build my pelvic strength back up, it's made this part of my recovery a little more challenging and difficult.

     For those who don't know much about the pelvic muscles, I'll give you a brief anatomy lesson. The glutes are a large group of muscles that make up the buttocks area of the body. The glutes are some of the strongest muscles in the body, they help us walk, stand, and sit. Many of you might be wondering what happens when the glutes don't fire properly? Let me explain, the other muscles surrounding the glutes take over and become overworked. My hamstrings, quads, hip flexors, and adductors muscles have now taken on the additional stress of helping my body move. I've been working with my PT to retrain my muscles how to fire properly, which is good in every way, except it's hard work and painful...so painful! When I get the motions right I know it, because at first it really hurts, it is starting to get better, but it's been a slow process. Over the last few month's my right side seems to be catching on a lot faster than my left. I see a clear distinction between my right and left side now and I often think to myself if my left side felt anything like my right, things wouldn't be too bad.

    My left side is and has always been the most affected from the hysterectomy. My biggest issue over the last few weeks has been coming from my piriformis, a muscle in the gluteal region. The piriformis muscle controls almost every motion of the hips and legs. When the piriformis becomes aggravated it tightens up, in turn the tightness puts pressure on the sciatic nerve...ouch, the sciatic nerve has a mean bite! It's a vicious cycle of sorts, the less pain I am experiencing the more I feel like I can sit and do, the more I sit and do, the more the pudendal nerve and now piriformis muscle acts up, then the sciatic pain starts in on all the fun, which puts me straight down. With rest I always feel better and then I get up to start the whole vicious cycle all over again...who has time for this? This has been happening almost everyday over the last few weeks, it's a terrible feeling, once the piriformis starts to act up I feel stuck. No matter which way I move my leg I experience a sharp stabbing pain right in the middle of the left butt cheek, then it's not long before the pain starts shooting down my leg. I've been working on stretches, but the motions of the stretches are very difficult to do with sharp shooting pains. On occasion I've gotten lucky and caught the vicious pain cycle just in time to work it out, but too often it hits me without warning.

     It just goes to show, that even though a couple of months ago as things were finally starting to feel somewhat normal, my body is letting me know I'm not completely ready to jump back into the swing of things quite yet. It's hard to find the right balance. For me balance is a fine line between feeling great and being productive, and simply over doing it without even being aware. When I'm feeling "somewhat normal" it's easy to get carried away and cross this fine line. Some days I wish this little fine line had a buzzer or an alarm to warn me that I've gone too far and to stop doing whatever it is that I'm doing. But...my figuratively speaking fine line has no such thing. Clearly my body senses when I cross the line, but unfortunately the alarms of pain seem to work on a delayed timer. I really hate feeling this way as if I'm tip toeing around my pain as to not make it any worse. My days have become very unpredictable and it's hard to get many things accomplished, on these unpredictable days I feel extremely worthless.

     A couple of month's ago my days were more predictable, I knew my limits and if I stayed within my limits my pain stayed low throughout the entire day. As my days turned into weeks I started to feel more confident about testing the waters. I stepped outside of my comfort zone and started adding in some of the things that had been lost to PNE, and I'd missed doing for so long. I went to the movies, took a couple of road trips with my family, and gave sitting a try more than usual. It appears trying to step through the door of normal was too much for my nerve at this time and over the last few weeks I've been paying the consequences.

     The new plan is to cut back on the sitting and hope I can get back to where I was. This doesn't mean I'm not going to attempt the movies or a road trip ever again, it just means I won't cram so much of it in all at once. It's good to test the waters every now and then. I know this attempt didn't work out exactly as planned, but I'm not going to let it discourage me and keep me down. I'm going to keep pushing along and keep trying!

Nothing ever stays the same, it will get better...it will!

9 Month Post-op Update

     Hello...I know it's been a while, and this update is a little over due, but I'm still here. I took a little break to spend time with my kiddo's during their summer break. They only get three weeks, (no thanks to year round school) so I have to make the most of it.

     Since my last update I've had one unexpected and not so fun flare, a slight set back with pain, and (I have good news too) more milestones to share. So as you can see a lot of ups, and some downs as well the last few weeks.

     I'm starting with the milestones, exciting and good news is always fun to share. I sat through not one..., but two movies this last month. I could hardly believe it, I made it through the entire show! Both times!! My last attempt at going to the movie theater was last fourth of July, and after 20 minutes I ended up standing in the back for the rest of the movie. Fast forward one year later, and the impossible is finally possible. I definitely felt some discomfort, but it was manageable. The feeling of one foot inside the door of "normal" feels so amazing. For the last two and half years I could have never imagined enjoying something as simple as going to the movies, yet this simple pleasure has been given back to me and I'm feeling very blessed.

     Next milestone, one more successful and fun filled road trip. For the fourth of July we headed 4 1/2 hours down south to hot, hot St. George, UT.  Temperatures hovered around 110-114 most days, but despite the heat we had a blast. My 4th grader was assigned Washington County for his county fair project this year, St. George is a city in Washington county. With our summer break finally starting just before the 4th of July, we were brainstorming on something fun to do. We/he thought it would be fun to go to the county he had just studied in school. He also knew we had some good friends that lived outside of St. George in Cedar City and he had been begging to go see them for month's. He had the perfect trip planned out in his little head, so we went with it. We had an amazing time visiting with friends, a lot of swimming, a little bit of hiking, watching one of the best firework shows ever, and kayaking in the lake. Outside of the long drive there and back, I did all of this without experiencing an increase in pain. My friend even commented about everything that I was doing and seemed very surprised and so happy for me. I'm really happy about the direction I'm going...I think I can get use to this!

     Wait...hold that thought...I may have spoken to soon. That pudendal nerve of mine has a funny way of reminding me that it has a mean bite if I try to forget about it. I had a couple of really good month's and then out of no where my pain shot up. I mean this is bound to happen, but usually it's for a couple of hours or a day at most, not for 8 days in a row... at least not anymore, I thought I was past all of that. I'm not exactly sure what happened, but clearly I was dealing with a flare.

     Oh the dreaded flare, it's my bodies way of screaming at me that I'm having too much fun and it's a harsh reminder that I can't always do everything that I'd like to do. Nerves are funny like that, completely unpredictable and unforgiving. Then just as my flare is calming down my feet start acting up, keeping me up at night, throbbing , burning, aching, just trying to stand up is painful...how am I suppose to walk? Then a week later my lower back starts in on all the fun, it's so odd! My feet and back hurt so bad I forgot about the pain in my in-betweens, ya, it was that bad!

     I told my PT last week I think I'm having a set back, she reassured me and said "I wouldn't call it a set back, just a little bump in the road." I left for home and later that night my back seemed to get all bunched up and it felt like it was catching on something deep inside...ouch! So this week in PT we focused only on my back, it seems the catching and twinging and twitching is finally gone, but now I'm left with a very sore feeling. I hope I'm over this bump in the road...it's been a long couple of weeks...I'm tired!

      Even with this "bump" in the road, overall I've made progress along this road of recovery. I'm really enjoying the feeling of  life's simple pleasures seeping back in and giving me a second chance at "normal" again.

   

   

8 Month Post-op Update

 
     Here I am...at my 8 month mark already. I am so happy to share that I accomplished a BIG milestone in the world of PNE this last month. A year ago I never could have imagined taking a road trip with my family and enjoying it, just the idea alone seemed out of the question and completely impossible. Over Memorial Weekend I did just that, and it's the closest I felt to "normal" in a very long time.

     Last June my family and I did attempt a 4 hour road trip. We planned a trip to the Dinosaur National Monument with my husbands parents. My kids were so excited, it was too hard to say no, I did not want to disappoint them. I was extremely miserable, I hurt so bad and felt so discouraged with my bodies inability to perform and work like it use to. It was some of the most difficult pain I had endured, and one of my worst flares along this journey. It took 9 full days to recover from our 2 1/2 day get away. I spent the first 4 days laid up in bed after returning home, and it was about another whole week before I felt back to myself. After that experience, I didn't see myself going on very many road trips in the near future and I definitely didn't expect I would ever enjoy one again.

     I'll admit, back in March when my husband first told me that his family reunion was going to be in Idaho over Memorial Weekend, I was not in a position to give a definite answer on whether I'd be going or not. On the upside, I hadn't totally dismissed the idea all together, and the fact that I was considering the possibility of even going was huge all in itself.

     I had finally reached a point in my recovery where the things that I had missed out on for so long were starting to feel closer in reach and more of a reality rather than a distant memory or dream. For over two years now I'd stay home as my family walked out the door and pulled out of the driveway to enjoy various activities without me. It was in those moments that I despised PNE the most. I wanted nothing more then to be with my family enjoying life, but my physical limitations made this too difficult for me.

     On Mother's Day I decided that I was going to do it, I was ready to step outside of my comfort zone and go with my family to Idaho. With my pain levels beginning to develop into a new pattern I thought what a great opportunity, I couldn't think of a better way to try out my new and improved broken sitter than on this upcoming road trip. My kids were so excited about the news, there was no way they'd let me change my mind even if I wanted to. We would be traveling 4 1/2 hours to Miracle Hot Springs, which is located just outside of Twin Falls.

     Traveling to Idaho turned out to be more difficult then I had expected. We weren't even an hour into our trip when I had hit my sitting quota. When I hit this point I usually can't take anymore siting and it's time to get up. I thought to myself  "it can't get much worse than this", and I kept telling myself that "I can do this, if this is as bad as it's going to get, then I'll deal with it." I was wrong, after 20 minutes I had completely maxed my sitting limit, and before I knew it I had squirmed out of my seat and was down on my knees hunched over on the front seat. My knees can only take so much, so after a 1/2 hour I attempted climbing back into my seat. By this point we are only half way there...ay yi yi! It's going to be one very long and uncomfortable couple of hours riding in the car.

     Once we arrived in Twin Falls it was close to bedtime, I was glad because my pelvic muscles were tight and stiff, and my  broken sitter was on fire. I was so happy to climb into bed and let my body rest for the night. Surprisingly I woke up feeling great the next morning. After breakfast we finished the last 40 minutes of our road trip and finally arrived at Miracle Hot Springs. My next two and half days were filled with very little pain and I was able to experience life just like a normal person again....it was unbelievable!...it was a miracle! Hehe!!! I couldn't help myself....I had to throw that in.

This is where we slept...in the sleeping dome 

The view from the front door of our Dome

Complete with a queen bed, heat and air conditioning too

This was his favorite part about our whole trip

 

Interesting chair outside our door

We played and relaxed in the hot springs....

Playing a game of checkers

hanging out with the fam...catching up and relaxing

We even reserved a private hot spring for the afternoon  

 We drove about an hour away from the hot springs to visit a place called Mammoth Cave. I unexpectedly tolerated the drive and the short hike down into the cave. I was feeling extremely overwhelmed with happiness, I was living life again and enjoying every last minute. Wa Hoo!

All of us just outside of the cave entrance

12 and older were given there own lantern 

That was the temperature inside the cave

Favorite thing to do with grandpa...geocaching!

 

     Coming home we stopped in Twin Falls to a look at the Shoshone Falls. It's a beautiful waterfall located on the Snake River in Idaho. We were lucky enough to arrive just at the right time to witness this spectacular sight complete with a rainbow...breathtaking!

Wow! It was so beautiful!

A view of the Snake River

here we all are

The people I love...my family

     The drive home went much better than driving there. I think the lesson I learned is to start out a long drive after a good nights sleep versus running around like a crazed mom all day getting everything ready and then expecting my body to endure a 4 hour long drive like most normal people could.

     I really expected to return home and more than likely pay for the consequences from our weekend getaway. But, luckily it never happened. I got up Tuesday morning feeling like I always do and I just shook my head in disbelief. I still have bad days here and there, but I am really feeling good about where things are going in my recovery.

     As Memorial day approached it was evident as I  looked back over the last couple of month's that I had made it to a new phase and started a new pattern. My new phase in recovery is that my pain levels are staying down more regularly, and this has helped me with getting back into a routine with my family. It has been nice to have more predictable days more frequently, and my progress has left me thinking that I AM going to be okay.

   

7 Month Post-op Update

     Today is my 7 month mark, and looking back over the last month I haven't seen a whole lot of improvements. It's all good though...I'm still continuing to have lower pain days and this is HUGE!

     I have been experiencing a couple of new issues this last month, one old symptom has returned, and a brand new symptom has decided to join in and make things a little more interesting. I'm not too concerned yet, but I do have a couple of thoughts that may be contributing to these new daily annoyances. At six month's some of the areas down there in my in-betweens were still numb from the surgery, it seems like more of the sensations are finally coming back. While this is a good sign, regaining sensation is not always the most comfortable at first. Imagine when your foot has fallen asleep and is trying to wake up, now imagine that feeling in the most private area of your body, see where I'm going with this...a constant prickly needle feeling. My physical therapist and me both think this will go away eventually, at least that's our idea for now. The old symptom that has come back involves bathroom visits, I'll spare the details, but it has been a good reminder of how bad it use to be. I sure hope this is only temporary and not my new normal. The sensations felt while the nerve has been waking up is very irritating for me and my in-betweens, it turns the pain up a little, but is more aggravating if anything.

     My spirits are still high and even though this has been a slow recovery process, I truly feel like I'm heading in the right direction. I'm moving forward and keeping one foot in front of the other. At one point in this journey PNE had taken total control over my life. I am thankful to have pushed through all the pain and devastation and be on the other side of despair. I refuse to allow PNE to define me. I am so much more than PNE! Everyday I make a conscious decision and a choice, I choose to look at the broader picture...I choose happiness over despair. Life still has so much to offer and I choose to be grateful for all the many things I am blessed with despite PNE.

6 Month Post-op Update

     Well friends and family, today is April 9th, and I finally made it to my 6 month mark, HOORAY! At this stage who knows, this could mean I'm half way through my recovery based on my surgeons opinion, or a quarter of the way based on other's experiences with decompression nerve surgery and the opinions of the United States specialists. Either way, it is a mile stone worth celebrating, and the way I look at this is there is still plenty of time for many opportunities of improvement over the next few month's. I'll just remind you that nerves really do take a long time to recover and heal, and even though 6 month's ago I envisioned my six month mark so differently, I am very thankful for the progress that has been made.

     I knew when I decided to travel to Turkey for my surgery that there were no guarantees. I also knew this surgery would not cure me of  PNE, because as of now there is no cure for this rare nerve condition. But, what I did know was that this particular surgery's success rate was between 60%-85%, and that a 50% improvement in pain reduction was considered a successful surgery. After 20 month of living with excruciating and debilitating pain I new this was my only chance of regaining some type of normalcy. And, even though I knew PNE would more than likely affect me for the rest of my life in one way or another, the thought of  having a 50% or more reduction in pain filled my heart with happiness and restored lost hope.

     Looking back over the last 6 month's of my recovery, I can honestly say that physically I've had my fair shares of up and downs, but emotionally and spiritually, I've amazingly managed to stay strong and this has been a true blessing during this long and very slow recovery process. It's not easy to see the progress that has been made from day to day, but compared to this time last year, and even compared to the first couple of month's post surgery, I can see and feel the differences.

     Today this is where I am in my recovery, my pain levels have significantly come down, most days I hang out in the 4-5 range, sometimes it can creep up to a 7, but not very often, and even better, I've had days where it goes as low as a 3, and I've even experienced a 2 a time or two also! It's been a long time since I've depended on the use of ice, and lately, more days than none I can go my whole day without needing to lay down to relieve the pressure and pain. Keeping the pain levels down is half the battle, so this is a HUGE accomplishment so far. Sitting is still an issue, although, since surgery I can now sit flat rather than tipping up on my hips, which has been a nice improvement. Socially, standing up in a sit down kind of a world is not my idea of fun. I'm limited to 30-60 minutes of sitting and then I'm done, the amount of time really depends on what kind of day I'm having, and what type of seating is available to sit on. My everyday challenges are vacuuming, mopping floors, and grocery shopping. Vacuuming was my favorite chore before PNE, now it's become a difficult task, some days I can get through a couple of rooms, but most days I rarely finish the room I started in. Mopping is impossible, now my kids argue over who's turn it is, and I feel my floors are only as clean as their ability, or willingness to do so. And the shopping, this is no easy task, we are a family of 7 so rarely is a trip to the store for just an item or two, it's always a full basket, and pushing a heavy basket around is really difficult and creates a lot of pain, not to mention the loading and unloading of the cart and the car...extremely exhausting all around! I usually have to bring one of my older children along or I wait until the weekend when my husband can tag along to help. The good news is that when my pain increases due to my activity, it's not long before it settles down. Before surgery once my pain hit high levels it would stick around for the rest of the day, even if I layed down, and sometimes depending on how much I over did it, I found myself dealing with a two or three day flare, but...not anymore! I love that my bad days are more like what my few and far between good days were before surgery, and that is progress worth celebrating.

     The most exciting news is...I find myself entertaining new ideas, the main one is the possibility of going to a movie with my family, and even better, just my hubby. I have only been to the movies twice since PNE found it's way into my life, the first time I literally squirmed myself out of my seat because it hurt THAT bad, and watched the movie kneeling on the nasty theater floor...eww! The second time I stood up in the back, and our two year old thought this was the greatest thing ever, he spent his time running up and down the isle between me and my husband...very annoying! With these two attempts of going to the movies I realized that it was not worth my time, it's hard to enjoy a movie while kneeling on your knees or standing in the back all by yourself. I had come to terms with the fact that going to see a movie at the theater was something I would never do again, but now this milestone is seeming more and more obtainable as I improve. All the things that once seemed lost, feels like they're in such close reach, that I'm even more determined to totally kick some PNE butt!

     I thought I'd used this post to answer some of the most commonly asked questions since returning home from my journey to Turkey for laparoscopic pudendal nerve decompression surgery. Are you ready? Let's get started!


Do I regret going to Turkey?

This is my most frequently asked question, and my answer is...ABSOLUTELY NOT! If you only knew how many doors this experience has opened for me, then you would understand why I have no regrets. (this is a post all of it's own)


How am I doing, am I better, did it work?

I think this post sums up a lot of these question, but if you're looking for a number, I'd say I've seen about a 25% improvement at this stage in recovery...YAY!


Do I take medication for the pain?

Nope, not anymore. I had terrible side effects on the medications suggested for reducing nerve pain, I have been off all my meds since last June. On occasion I use a  valium/baclofen suppository after an intense PT session, but I think I've only used three in the last 4 months that I've been doing PT.


How's my back?

Ha ha...Love this one! Ummm, it's not my back.


Do I stay in contact with the surgeon fromTurkey?

Not so much anymore, he is one of my FB friends, and if I needed anything I'm sure he'd help in any way. He's just that good!


How's my foot and leg?

My motor function is 100% improved. I still have sensation issues with some numbness on the top of my foot, but overall the sensory issue is 90%-95% improved.


What are the things I'll never do again?

This is a loaded question, because really anything is possible. But, even if I make a full recovery and it may seem like I can do anything, there are some sure things that I should avoid as to not re-injure this nerve.
Riding a bike or anything that requires straddling, horse back riding, snow mobiling, wave running, and so on. It's possible that I would not have the opportunity to work full time at a sit down job, this may or may not be too difficult. You see, I guess time will tell, and I really don't know the answer to this question quite yet.


      What I do know is that there are worse things I could be dealing with, I feel blessed that this is not a life threatening disease, I do have a choice to live, where some people don't even have that option and are literally fighting for their life everyday to stay alive. I feel blessed that I have the freedom to get up and walk, it might be hard and I may be slow at it now, but if given the choice of never to walk again or never to sit again...I'd definitely take no sitting for sure. I also feel blessed to have such amazing family and friends and for their amazing support during this trying time. I'm in a very good place and I'm still hopeful that good things are to come with some more patience.

 Thanks to everyone that has followed along during this journey, for your kind words of encouragement and endless support, it really does mean so much!

Surgery Progress April 5, 2013

     Hi everyone, I know it's been a while, in fact March managed to sneak right on by without one update, sooo sorry. In a way this really is a blessing of sorts, March proved to be an amazing month with lower pain days which means I'm up and more involved with my family for the first time in two years. So you see, as thrilled as I am, I just haven't had as much down time which in turn means very little screen time anymore. I'm very excited to share some highlights in March, so let's get started.

     I'm still tolerating PT fairly well, and strongly believe it is worth my time and hard work. I was able to start pool therapy and I'm loving this part of PT. It feels so good, it's like stepping into a very warm bath, and after all the manipulation from the regular session it's perfect for stretching and relaxing my muscles. We still do our regular session and then I do a 1/2 hour session in the pool after, all together it's two hours of therapy, but only once a week. I was finally given permission to start working on kegels to strengthen the pelvic floor, this is huge, as most who suffer with this condition know, this is a BIG no, no in the PNE world. Currently we're working on retraining my glutes to fire, I know kinda silly right, but it's my bodies way of protecting the nerve. My hamstrings have literally taken on the task of supporting and moving my core when I move and walk, and over the course of two years my hamstrings tire very easily and become very weak, especially on inclines and stairs. I have also started walking on the treadmill, I'm so pathetically slow, because the motion of walking tends to irritate everything in-between, but I'm hoping with time I will build up speed and distance. It just feel so good to move again, before surgery walking was very difficult, not only did it irritate my in-betweens, but also my pelvic floor muscles would become so tight that my stride would get shorter and shorter until I was stuck and couldn't move one leg in front of the other without experiencing severe pain. My pelvic muscles are much more relaxed now, and when I feel the tightness coming on I can simply lay down and do some stretches to calm everything down. Overall I'm happy that I'm able to start working on strength exercises, it's a good place to be in my recovery.

     The best thing about March was that it was a month full of more good days than bad. There were several days that I was completely shocked and pleasantly surprised by my pain levels. I've finally reached a point where I can get through my whole day (most days) without thinking to myself  "this really hurts, I just can't do this a second longer, and I really need to go lay down." Good days leave me feeling overwhelmed with a sense of joy, and relieved that things are slowly turning around for me, and during these times I feel so happy I could cry. I'm feeling very grateful, and with everyday that passes I'm gaining new ground, I just feel very content in so many ways, it's unbelievable!

Surgery Progress Feb. 28th 2013

     I am happy to report that February is ending on a much happier note than it started. I've regrouped and I'm focused on healing and being thankful for the small steps of progress that's been achieved at this stage of recovery.
    
     My biggest accomplishment for February has been with physical therapy. I've had a big breakthrough, it seems we've reached a point where the sessions have become less intense and much more tolerable. Me and my PT are noticing progress that was not obtainable prior to nerve decompression surgery. At this point last time there was not much more she could do for me and I had to stop treatment. Now we are entering a phase of new and exciting opportunities and I can hardly wait to see where I'll end up this time around.

     I'm still having issues with pain and difficulty with sitting, but overall my pain is becoming more easily identified to specific areas whether than so widespread. My pain levels have also evened out, most days I'm hanging out in the 4-5 range with a few exceptions. I almost hate to say this with fear of speaking out too soon, but it appears that my days of  having pain in the 8-10 range may be long behind me.

Not much else to report on at this time, just waiting for all the small steps of progress to add up to some of the bigger mile stones I've been patiently hoping and praying for.

Surgery Progress Feb. 5th 2013

     ARRRGGHHHH!!! Well, that pretty much sums up my mood the last couple of weeks, super frustrated and a little down. I have been patiently waiting, for something, anything, to indicate that this surgery was my saving grace from the constant pain I endure everyday. I know nerves take a long time to heal, but I really haven't seen much improvement over the last 7 weeks. I mean c'mon, 7 weeks is a long time to go without any noticeable changes, I feel stuck, like this is my new normal, and I need to just learn how to carry on as I am. Except, I have no desire to go on like this, I just don't see this as my future, I envision my life so differently, like "ahem" without PAIN!

      In this stage of my recovery, I have two contributing factors to thank for my not so upbeat demeanor. They both just happen to be wrapped up together this upcoming weekend. First, the 9th marks 4 months from my surgery in Turkey, and second, the 10th marks two years from the day that drastically impacted and changed my life as I once knew it. My emotions are running high. Last week, I felt like I was on the verge of crying at any moment, this week, in quiet moments, my thoughts easily brings me to tears. I thought at this point I would be in a different place, I had painted a very different picture in my mind than what I am experiencing now. Perhaps my expectations were too high in this stage of recovery, and now I'm dealing with the let down, and I feel incredibly discouraged. I didn't expect my two year mark to be so similar to my 1 year mark. I thought I would be enjoying so many things that have been lost, like going to the movies again, and many other silly things that I use to take for granted. I just want to fully enjoy life again, without any restrictions.

     I suppose it was my time to have a little breakdown, it's been a very long time since I've felt this discouraged and overwhelmed on my journey with PNE. This is my first "woe is me" pity party since last July, and for that I am proud of myself for staying so strong through all of this. I couldn't have done this all alone though, I have been very blessed the last few month's. For the longest time my heart was full of sincere faith, bursting with hope, and filled with overwhelming amounts of support of love. This has kept my spirits high, and my outlook clear and bright. I haven't ran completely out of hope and faith, it's still there, I feel it deep down. I still feel so much support and love from so many of you. Thank you for your continued prayers and compassion. I'm really in need of "one" just one, little tiny sign of improvement, so I can climb out of this ditch I've recently found myself in.

     Although I feel like I have had enough of this, I guess I'm still learning a thing or two about patience. If  by chance I figure out how to embrace patience wholeheartedly, I'll gladly share the secret! But, for some good reason, I'm sensing deep down, that it will take a lifetime of experiences before I'll completely master this quality for myself? In the meantime, nobody is perfect, and as my patience are being pushed to new limits during this time of despair, I'll refocus, and do my best to pull out some of the core values that encompasses patience in the first place. I'll take a deep breath, and come to terms with the fact that I have no control over this particular circumstance, absolutely NONE! In fact, this is a golden rule of most situations, when life unexpectedly throws chaos and turmoil our direction, it's completely out of our hands. Our job is to stay strong and keep focused on the bigger picture, and trust or have faith that all will be well in time. I know, a lot easier said than done, but I am giving it my best foot forward, because it's all I have right now. So, I will pull myself together, sit back (ha, ha I wish), relax, and wait for all the good things to unfold in it's own time, not mine. I truly believe time is the key, I know good things will happen sooner than later. I just need to remind myself to wait "patiently" and we shall soon see that having a little patience can go a long way!

Surgery Progress Jan. 19th 2013

      I have made some great progress the last couple of weeks, progress that's worth posting. But first, I want to share a few lines of one of my new favorite songs. The song itself doesn't really pertain to this issue, but these couple of lines totally jumped out at me. The words and the rhythm run through my head all day, everyday, over and over again, for the last couple of weeks. It Pink's new song called Try, and here are those magic words that I can't get out of my head.

But just because it burns
Doesn't mean you're gonna die
You've gotta get up and try try try
Gotta get up and try try try
You gotta get up and try try try

These few words of this song have pushed me along and has given me an edgy attitude of not giving up. I guess I owe it to Pink for getting me through the this stage of recovery. For some funny reason it's worked for me, and I'll take it.

      Okay, now I'm ready to share all the good news. A couple of weeks ago I went from having PT 4 times a week to only 2 times. What a difference this makes, I love having more free days. Because everything is going so well with my foot, we were able to cut back to once a week. On the other hand, my pelvic floor PT was cut back, for the opposite reason, it was too much and was creating more pain. I now only have "ONE" more PT appointment for my foot, and then I can continue on my own with an at home program. YAY!!!  After 14 very long weeks of suffering with peroneal nerve damage, the nerve is about 85% healed. I have said goodbye forever to the walking brace and the ice machine. I am able to get in most of my shoes and can walk around for a few hours with very little irritation. The water falling on my foot from the shower actually feels like water now, not sharp glass or needles. And, my foot really doesn't mind sleeping under the covers now either. Certain things running across my foot still sends shocks across my foot, and I get quick zaps or stings a few times a day. I apologize in advance if you see me with a funny expression on my face like furrowed eyebrows, or wide eyes, or gritting my teeth, I'm probably just experiencing that unpleasant shock which catches me off guard at times. It's hard to believe that I went 10 weeks straight with that intense pain, and now when it comes on for a few seconds, I get lost somewhere in between the tense muscles and forgetting to breathe. I'm so glad that the worst part is all behind me with this whole peroneal nerve issue. So, the next 15% of improvement that I'm waiting on, is sensation, and building up strength. For now I have been very happy with my progress, and I'm sure with a little more time my foot will be back to 100%.

     Well, it seems just as one nerve is calming down the other one has started to act up. I have recently  experienced a whole new issue in my in-betweens. For the first time since having PNE I am feeling all sorts of shocks, zaps, stings and prickly sensations. Thank goodness it's not as intense as my foot, but it's still very uncomfortable. Before surgery, I would get a feeling like tiny bugs were crawling all over in my business, I'd mostly feel this at night and on my bad days it was almost a constant buzz. It wasn't painful, just extremely annoying. Now I'm thinking I'd take that over this any day. Three month's after surgery I have moved on to a new stage of recovery with the shocks and zaps, it only lasts for a few seconds, but happens frequently, and intensifies if I sit. Now stay with me here, because this may sound surprising. When this new sensation began, I actually felt excited, because believe it or not, just like with my foot, this is a very good sign that the nerve is healing. I definitely wouldn't say this is fun, and for the first time in this whole recovery process, I'm feeling a little scared. I just don't know how long this is going to last, and I really don't want it to become any worse than what I am dealing with right now. I really hope I can make it through this stage of recovery, without completely loosing my mind. Nerves are so unpredictable, and at times it makes living with this condition a little "nerve-racking"

     At three and half months post-op, this is where I am with my recovery. I am about 5-10% better. I basically feel the same as I did prior to surgery, with a couple of exceptions. I still have numbness from the surgery in some areas. I can sit flat now, I rarely lean up on my hips when I need to sit. I can't always do this, but I have made it up to an hour with sitting, it's not pain free, just a little more tolerable. Probably because when I do sit now, I no longer feel that pull or stretch like before. The constant burning is better too, I only feel the burning after PT or if I sit for too long. For the most part all of the same issues are still there. I still prefer standing over sitting, the issues with sexual dysfunction is still there, and I have a hard time getting all the things done that I normally could accomplish throughout the day. The pain is very distracting, on bad days I have little desire to do much and it's hard to stay focused, on better days it seems everything takes a lot longer to do, even if the pain is on the lower end, it still slows me way down.

     Do you remember, just over a month ago I had one of the most amazing weeks. I'm so glad I wrote about it, because if it wasn't for that post I would have thought I had dreamt it all up. I'm so thankful for that week, I'm sure this will happen for me again, I just hope it sticks around a lot longer then a week next time. During that week my pain didn't get much higher then a 4 on a scale of 1-10, and since that one amazing week, I haven't been able to get it below a 5. I am a little surprised by this, it has been 5 weeks, and not even one day has come close to where I was then. I've been doing a lot of thinking, and I'm probably over thinking this matter, on trying to figure out what was going on at that time to make everything so much better. I'm going to have my PT go back and review our routine and start with that. Maybe I should just stop worrying about it, because I'll never make sense of what the nerve really is up to. They truly do have a mind of their own.

     Oh ya, one more piece of good news, I gave our two weeks notice to the daycare yesterday. I wasn't sure what to do with my youngest while we were away, and during my recovery time. A couple of weeks before we left for Turkey, we enrolled him in daycare for three days a week to help lighten the load. Once we returned home I thought it was best to keep him enrolled, I was not in the best position to be looking after my busy little buddy all day on my own. Now that PT isn't taking up so much of my time, I'm feeling like I can get back into a normal routine with my three year old. I am so excited to be at a point where I can care for my little guy again, and he is so happy that he gets to stay home and play with his mommy all day long.

     There you have it all. I'm just going to keep on looking forward and hope in the next couple of months my pudendal nerve starts showing some impressive improvements.

Surgery Progress Dec. 31st 2012

     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.

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!!!

Surgery Progress Nov. 27th 2012

     I know, I know,  it has been a couple of  weeks since I have posted about my progress. It was a very busy week last week with the holiday and all, and my kids home. It was so nice to have some down time to spend with my family. I am at my seven week mark today, and I do have some improvements to share...here it goes.

     The PN pain has been tricky, I have had some good moments and some bad over the last couple of weeks, but over the last week and a half I have had moments with no pain. I know, can you believe it! Over the last week or so I wake up feeling perfectly normal. I wish I could lay there all day and enjoy this moment, but I have five kids, so ya, not even an option. Once I get up the pressure starts to build, and as the day goes on the pressure intensifies and everything becomes very sore. Some days I check out of my mother and wife duties a little early, I just can't stand for a second longer. I go upstairs and lay down while my husband takes over for the rest of the night. After a hour or so I feel much better, and WITHOUT the help of ice. I am sleeping really good through the night, which is so important for my body to continue healing. On some days over the last week I have had times when I sit and I feel absolutely normal, I feel fine for about 15 or 20 minutes, and then the pain starts. I would say my pain ranges from a 3-7 while I am up and about. Obviously, as the day goes on the pain increases, but with rest I get relief. I went to Costco the other day, and I was completely worn out after pushing a  full and heavy basket around. My pain levels were pretty high and I thought I was going to have a big flare that would last a few days, after some rest I was fine and the flare never hit. I think this is HUGE! I am so excited for every little step of progress that is happening, every little sign of improvement gives me the strength to keep pushing along. Now touching is a different story, I still have numbness, and everything is very sensitive, mostly it feels raw, and very, very  bruised. I start physical therapy tomorrow, now the hard work will start, but eventually all of the hard work will pay off.

     Now, as far as my foot and leg goes I have seen some big improvements. The pain is still there, and without the thermal compression unit I would be a very unhappy person right now. I use the machine all night long, the constant cool water circulating around my foot helps me to get plenty of sleep. The pain has changed, I only feel that deep burn and ache occasionally. Now it feels like an intense sting or burn. You know when you were little and you had been playing out in the snow for a very long time? And, we would think the best way to warm up our freezing hands would be by running them under super warm water. Can you imagine that sting that is felt when doing this? This is how my foot feels now, with random intense shocks of pain. Sometimes the hyper sensitivity seems to calm down and other times it is unbelievable. Now that it is coming and going some, I think this is a good sign of the nerve repairing. Over the last week I have been getting around my house without the leg brace. I am going up and down the stairs and getting around just fine, meaning I no longer trip over my own toes. This takes me to my biggest accomplishment, which has been with the movement, or range of motion with my foot. Only after 5 physical therapy sessions, we have seen a big improvement. Laying on my back my right foot would fall down, now I can move it up to a neutral position (point the toes up) and hold it without any problem. Now we are working on pointing the toes up while standing. If you stand up straight and raise your toes up on one foot so you are balancing on only the heel, you will see this is no big deal. For me lifting my toes of my right foot up off the floor in a standing position is impossible, my foot acts as if it is glued to the ground. The harder I try the more the muscles in my leg shake. As soon as I can learn to do this I will be able to drive again. My physical therapist is really happy with the progress so far, but reminds me we still have a long way to go. Getting the toes to lift up of the ground is the hardest part, I know with time this will happen for me.

     Funny story, on the day before Thanksgiving my dad was driving me home from a physical therapy appointment. He was accidentally going a little too fast, and we were pulled over by a police officer. The officer was a little confused that my dad's name and address on his licence didn't match with the one on my registration. I explained that my dad was helping me out. I lifted my right foot which is in a brace, and told him I am unable to drive, and that my dad was driving me home from my appointment. He responded with "well, I'll tell you what, one good deed deserves to be rewarded with another. I'll let you off today with just a warning".  Whew! The bad leg saves the day. So now I have found one good thing come from this whole leg situation, sympathy equals no speeding ticket, Nice!

     On a side note, I did try out driving with my left foot last week. I thought it would be so much easier then it turned out to be. I don't think this is for me. I had a really hard time coming to a complete stop smoothly. It was a complete and sudden stop, like 20 ft away from where I really needed to stop. And I had a hard time taking it easy on the gas too. On top of the whip lash like driving, I couldn't stop laughing, every time I thought I had it down... I didn't, and I would just bust up laughing. This made for an entertaining drive,  but is no good...I think I'll stay off the roads for now.

Surgery Progress Nov. 14th, 2012

     Well all my friends and family, I have made it through one more week. One more week closer to an end all has been checked off the road to recovery. I've had a lot going on over the last week, starting with doctors appointments, physical therapy, thermal compression therapy, and finally getting some sleep. YAY!

     I'll start with the PN pain, Oh you guy's and girl's, I really don't no what to say about this. I still have numbness, but I've had more pain this week than last. I thought maybe this was due to more areas waking up, but the numbness seems to be the same. More areas seem to be going through what my foot has been experiencing, but not nearly as extreme, thank goodness! However, super sensitive to the touch, like one big giant bruise. I'm a little confused by this, because it seems areas that felt fine are now acting up. Who knows? Nerves really do have a mind of their own, and I give up on trying to make sense of this anymore. I'll tell you all one thing, patience and pain are the worst of enemies, and I just happen to be right in the middle of this battle. Pain is definitely kicking some butt right now (literally)!

     As far as the sitting goes, I sit mainly in the car, going back and forth from appointment to appointment. A few things I have noticed since surgery and riding around in the car the last couple of weeks is, I find myself not leaning or tipping up on my hips to sit anymore. Ya, you heard it right, I sit flat, on both my cheeks, like a normal person. This actually feels better than on my hips. I've noticed that it no longer feels like I'm sitting on a golf ball anymore, and I don't notice that terrible stretching or pulling sensation anymore either. I know, wow, right! I'm wondering if this is because I still have some numbness, or if this is something the surgery has corrected. Now, I just need all the soreness to go away, and I really want the numbness to leave too, so I can get a better idea of what's really going on down there.

     Okay, finally my darn foot and leg. I'll start with my neurologist appointment. It was a good appointment, he was very thorough, but he kinda just said everything we had already been told. He was not able to give us a clear answer on when and if  I would regain the motor function and sensation in my foot and leg. Back to the nerves, you just never know? He said it could be up to 6-12 month's before I regain normal function and sensation, and there's a small chance it may never fully get back to normal. We had some encouraging things come from this appointment. First, he seemed pleased with the slight progress my foot and leg had made in the last 4 weeks. He compared my exam with the physiatrist notes from when we first got home. Second, he felt due to the progress, surgery was not something we needed to do at this time. As long as my leg and foot keeps improving, this will not be necessary, only if the improvement stops will we need to consider going this route. Third, he then wrote out a prescription for physical therapy, finally, someone to help me with range of motion, my foot is pretty pathetic right now.

     Over the last week I have had two physical therapy appointments. I now have daily exercises that I can do at home to help with motion and regaining strength. So far physical therapy has not been terrible and unbearable, everything about it has been good.

     The pain in my foot is still so intense. Last week I had a very good friend of mine brainstorm with me. She is always so good to do this, she hates seeing me in pain, and she's good at coming up with solutions that may not have crossed my mind. Thanks Kate! She knows how bad nerve medicines affected me over the last year, she knew this was not a road I was willing to travel again. I told her how ice was my only relief, but icing the top of my foot is not so easy. I was putting a hand towel across the top of my foot then an ice pack, and then would wrap it up with an ace bandage. Not bad, but it doesn't last all night, after a couple of hours I would remove the hand towel so the ice pack was directly on my foot. This process of too much cold, and not enough cold, to no more cold, was keeping me up all night. She told me about a ice machine her neighbor had brought home after a knee surgery. I knew exactly what she was talking about, because a few years ago I had ankle surgery, and they would hook me up to one of these machines during physical therapy.

     Neither one of us knew the name of this machine, but I thought I would start checking onto it. I called medical supply stores, and ortho supply stores and was not making very much progress. Finally I reached a company that knew what I was talking about, only issue is they did not rent them out, it was for purchasing only. Over a $300 dollar unit, not interested. She told me they use to rent them, but only with a doctors prescription. She told me the one they carry is called the Ice Man, she told me it is a cold therapy treatment unit. I gave my physiatrist a call and left a message explaining what I was looking for to see if they could help. Something very ironic, this was last Tuesday I left the message, she called me on Wednesday to tell me someone had just came in on Monday with this very item I was looking for. She said if it wasn't for that she would never have known what I was talking about. She contacted the company for me and after a couple of days for insurance approval, Matt my man, brought the unit out to my house, and I will get to use it for the next four weeks. His is a little different, his is called a thermal compression unit. No need to feel it up with ice and water it has a built in refrigerator and keeps the temperature at a constant 49 degrees. It has three tubes that run from the unit to the foot cuff. One tube for bringing water in and the next for taking it back, the third is for air that slowly compresses the cuff and then releases. It continuously circulates cool water around my foot and leg. I can wear the foot cuff all night long because it runs for thirty minutes and then rests for thirty minutes. I have finally had a couple of good nights of sleep, it has been so nice.