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.

So Much To Be Thankful For

     On today, the day of Thanksgiving, I truly have so much to be thankful for. Me and my family have been through quite a bit. We have gone through some drastic changes that has significantly impacted our life the last 22 months. Although there has been a lot of adjusting, and learning to cope with all the obstacles that come with PNE, there has also been so many good things that we have been blessed with while on this difficult road. I thought what a great day to share and express my gratitude for everyone that has been on this journey with us.

     First off, I am most thankful to my husband, he has stuck by my side in the most difficult of circumstances. I'm not going to lie, this has been very difficult on us, but with time we have grown together and not apart. I am thankful he has stayed so strong and has been so supportive through this journey.  He has stepped up and taken on so much more of the responsibilities for our children and around our home, while continuing to work full-time as our main provider. I am very thankful we have found our way through this together.

     Of course my kids have been so resilient through all of this, they have adapted to the restrictions and limitations that keeps me from doing the things that most moms do on a day to day basis. I have had days that I think "how in the world am I suppose to care for my kids", when I am struggling myself to get through the day. But on most days my kids are the ones that push me along and keep me moving forward. They Love me no matter what, and for this I am very thankful.

     I am thankful for our parents. Without their help while away in Turkey, I wouldn't be where I am today, which is the road of recovery, and hopefully soon a pain free life. Since returning from Turkey, my mom has been here every day taking care of me and my kids, and our home. She has stepped in and helped me in any way possible, so that I won't over do it, and can give my body a chance to heal and recover. So thankful for parents, especially moms.

     I am so thankful to Prof. Erdogru, and his laparoscopic technique. I am thankful for finding this remarkable doctor, who has so much passion for what he does. He is so much more then a Prof. of Urology, he is a healer of hope, and of pain. I can't thank him enough for all the hard work he has done in helping the sufferers of PNE.

     I am thankful for amazing friends and neighbors. We have been very blessed with the kindness and service of other, especially over the last 2 months. I am thankful for our friends and neighbors that helped with the kids while we were away. I am not talking just for a night or a weekend, but for over two weeks they stepped in and helped out. I am thankful for the numerous neighbors that brought meals into our home, while we were away in Turkey and once we had returned home as well. Even our old neighbors and ward stepped in to help. Two of my sweet friends from our old neighborhood showed up shortly after returning home with a large cooler full of  about a weeks worth of frozen dinners. They went out of their way in organizing and delivering the meals for my family. Thank you Julie and Stacie! I am thankful for neighbors who just show up unannounced with gardening gloves and her sweet kids in tow, to do the fall clean-up in our yard. Thank you Leeanne! And, so many others that have dropped off a plates of goodies and notes to let us know they are thinking of us. And, all the phone calls to check-in on me and to offer help. We are so blessed!

     I  am thankful for the PN support groups. Everyone has been so kind and supportive. I am amazed with the connections and new friendships that I have made because of this debilitating condition. I am thankful for everyone's words of encouragement, it has really been instrumental in getting me through this recovery.

     Something completely unexpected, that I am now having a hard time writing because of the tears in my eyes. We have been blessed with family who's way of helping has been through sharing the financial burden with us. We have received a couple of very generous checks, one by mail and one in a personal delivery. We are extremely thankful for this, Thank you, from the bottom of my heart!

     I am thankful to my Heavenly Father, and for my faith. I have faith that I will overcome this. I have faith that one day I will have a full understanding of why I needed to go through this, and in the end I will be grateful for the lessons gained. There are so many lessons to be learned when faced with adversity,  life lesson that only come when faced with such trials and tribulations. In the end I will become a much stronger person and for this I am grateful.  For now, I enjoy the closeness that comes from relying on my Heavenly Father, every single day, as I get through this hard time. I am thankful he shares in my burden and lightens my load with the many acts of kindness from the people in our lives.

Thanks to so many of you who have reached out and touched our hearts! I hope you all have a wonderful Thanksgiving!! Much Love, Shirlayne

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.

Surgery Progress Nov. 7th, 2012

     Hello friends and family. I am four weeks post-op, and a couple of weeks ago I imagined this post as one with lots of exciting news to share. I almost didn't post this week, because unfortunately, I feel that I have nothing very exciting to share. My last week has been filled with lots of pain and disappointment. Mostly due to my foot and leg. It has been almost two weeks since the pain set in, and it seems like nothing is letting up. After two weeks I feel worn down and exhausted, the pain keeps me up at night and I am getting by with very little sleep. I'll will try to put into words the pain I am experiencing. The top of my foot and the outside of my calf still feels numb. My foot throbs with a deep ache continuously, it feels like all the little bones on the top of my foot and in my toes are broken. When I shower, the water falling onto the top of my foot feels like shards of glass. Blankets and sheets running across my foot feels like something is slicing right through the top. I walk around holding my pajama bottoms and pants leg up, because I can't stand it resting and rubbing across the top of my foot. A silly fluffy stuffed animal that was accidentally set on my foot, felt like a thousand needles piercing through. So crazy, and so not normal. Because it is my right leg I am unable to drive, this has been the most frustrating part. I want nothing more then to wake up and have everything back to normal with my leg and foot. Something to look forward to, is I have a neurologist appointment tomorrow. I hope we get to the bottom of the type of damage my peroneal nerve has, so we can get started on a treatment plan. I am ready to move forward and put this all behind me, I hope I get some relief soon.

     As far as my PN pain goes, I can happily say that I have gone more then a week without any burning. Just one of the many issues I can check off the list. It's a start, and I'll take it! I'm not very comfortable with sitting yet. I'd say that 75% of the numbness is gone in the in-betweens, but everything feels very raw and sore. Too sensitive to sit quite yet, I'm sure with a little more time the soreness will calm down enough to where I will feel ready to give sitting a try. I will be able to start physical therapy in two weeks, and oddly, I am counting down for this to begin. Not because it's fun, because there is nothing fun about physical therapy, but because it puts me on the road to recovery, and I am anxious to get to the end of that road.

     Sorry I have very little progress to share at this point, I hope things will soon get better. I look forward to the day when I can share my successful outcome. I still think with time I will be in a much better place, and will soon be living a life free of pain.