Wednesday, January 1, 2014
A New Year And A New Me
Hallelujah! I'm so happy that today officially marks the beginning of a new year filled with brand new opportunities and experiences. Although 2013 has come to an end, I will surely never forget it...what a year it has been.
At the beginning of last year I felt hopeful, deep down I knew things would get better, I just needed to be patient. One problem though...patience and pain don't exactly get along. This made for a very long and challenging year as I waited, and waited to see how this damaged nerve of mine would recover and heal. Patience has taught me so much. What a difference one year can make. I can look back and see that I have come a long way. This last year I overcame obstacles that I didn't expect, I grew and discovered new things about myself, and I've healed in more ways than one.
As the holiday season quickly approached this year, there was a stark comparison from two years ago, to last year, and this one. This comparison has taught me that no matter how difficult life may get at times, never give up, look forward, have hope, and most importantly have faith.
Don't under estimate the power of faith, it is through faith that we are healed in more ways than one. Faith blesses our lives with the tender mercies that get us through each and every hardship we are faced with. Faith has blessed me with an indescribable amount of strength and patience. Faith has guided me, comforted me, pushed me forward, showed me a new way, brought happiness, inspired me, humbled me, and reminded me time and time again that everything would be okay.
This time two years ago I was in a complete state of despair. I had spent close to a year living with chronic and debilitating pelvic pain. Even after traveling out of state to consult with a specialist, there were still so many unanswered questions, and too many unknowns. I was overwhelmed and heart broken from the limitations and restrictions this damaged nerve had caused. I couldn't drive most days. I couldn't leave my house to run errands and shop by myself. I couldn't lift and bend to clean the house and decorate for my favorite holiday. I couldn't stand in the kitchen to bake and prepare holiday dishes. I couldn't comfortably sit, at all, anywhere, not even for a minute. If I attempted a normal everyday task, it would land me in bed for days at a time. Most days I was confined to my bed as the sounds of life continued to flow and echo throughout the house. I felt like my entire life had been destroyed from PNE, and that I would never find or feel happiness again. Chronic pain steals so much, I felt miserable, and lonely, everyday was a constant struggle. In my mind I had been sentenced to a life time of pain. Life seemed dim, it took everything in me to get through my days that first year, and I didn't know how much more I could take before I'd have nothing else to give. It was a year about surviving and desperately clinging on to what had been lost in hopes that it would all be restored again.
Last holiday season, although I was still suffering with the same pain and some, I found myself on a whole new path. After 20 long and exhausting months, I was relieved to have found a surgeon that could help me. Even though this meant traveling to the other side of the world, I knew it was my only chance of regaining a life of normalcy. I truly believed with time things were going to get better for me. I still couldn't do many of the same traditional holiday things last year, but my spirits were high and I enjoyed every last minute of Christmas. My hope had been restored, things were looking up, and I felt happy despite the challenges I faced. Last year was a year about hope, exercising my faith, happiness, healing, and thriving.
This holiday season was truly a gift. Who knew this year's path of faith and healing would have brought me so far. I would have never believed two years ago I would be where I'm at today...it seemed nearly impossible. I am doing more and more, and feeling grateful for the progress that's been made. I am feeling less pain and getting stronger with time. I am no longer spending my days in bed. I am, for the most part, actively involved and spending time with my family again. I carried totes of Christmas decorations in from the garage, I decorated to my hearts content, I baked, and shopped, and pushed heavy shopping carts around, as I drove from store to store gathering gifts for my family. Sometimes my pain would creep up, but nothing that a few stretches and a good night's sleep wouldn't cure. Everything has drastically improved for me. This year was about having faith, patience, strength, accomplishments, milestones, feeling humble, and yes, more healing.
As this new year begins, I am once again finding myself on a new path. This time the path seems more familiar, one I know all to well and feel more comfortable on. It's a path that brings me joy, and a sense of contentment. My heart is full of gratitude as I look forward to what this year will offer. I am confident this year will give me exactly what I need and want. My deepest desire for this year is to feel carefree again.
This next year the PNE chapter of my life will continue, the story has not ended...it will go on. But I'm choosing to change the focus towards me rather than PNE. I'm no longer seeking answers, waiting months at a time to consult with only a handful of PNE specialist in the U.S., enduring painful procedures, appealing insurance claims, researching experimental treatments, deciphering between the limited surgical options offered as a way to ease the pain, traveling out of the country for surgery, and waiting to recover. I've been there, and done that. I'm in a better place, and I'm ready to move forward and leave it all behind me.
For almost three years PNE has robbed me of a carefree life. My life has been anything but worry and problem free. I'm not talking flat tires, and lost keys, spilled milk on a laptop, or opening the dryer to realize someones pockets weren't emptied, and finding gum stuck to the inside of the dryer and every single last piece of clothing kind of problems. In comparison these things, while annoying, seem so little and silly now. I'm talking about completely unexpected, life altering, and I have no clue what to do, I can't do this, make this go away, kind of problems. I'm ready to break free and just be me again.
I'm trading the tears and heartache for more smiles and laughter. I'm trading Dr. appointments and PT appointments for a clean house and days at the park or shopping in my favorite stores. I'm trading medical expenses for vacation expenses. And, I'm trading what's been lost, for a I'm thankful for what I still have attitude. It's time to move on, it's time to live and enjoy life again. This year is not going to be a "me and PNE" kind of year any longer. It's consumed me for too long, this year will rather be about me...just me, and me easing back into a carefree kind of lifestyle again. Free from troubles... free from heartache...free from worries...free from PNE.
I'm letting go and I'm ready to be carefree!
Wednesday, October 9, 2013
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!
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!
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