Tinsel and Teardrops

This year, we had A Plan! A plan that would get me through the holidays pain-free. Due to the excruciating pain caused by the horrific Holiday Seasons for the past three years, my PT Team and I devised a sure-proof strategy that would allow me to experience both Christmas Eve and Christmas day with family. However, as I have said time and again, “We plan, God laughs.”

Nancy, my case manager, determined that although I have an every-other-day restriction policy, I would likely be able to manage a small gathering at my own home on Christmas Eve and a few hours out of the house on Christmas Day. Additionally, I stocked the house with bath salts (which ease muscle spasms), charged my infra-TENS machine (which helps decrease inflammation) and had my orthopedic cushion packed and ready to go anywhere we went. Also, Gage attended Physical Therapy with me on the Thursday prior to Christmas and learned massage techniques to aide in reducing my pain. We were set to go!

On Christmas Eve, Gage and I met our friends at church and enjoyed celebrating The REAL Reason for the Season. We went to the afternoon service so that I would have about two hours to rest after church before my family arrived. The pain was creeping up, but I was able to keep it under control. Gage and I enjoyed a nice evening with my uncle, cousins, parents and grandparents. Everyone laughed the night away, exchanged presents and visited while I was able to relax in the comfort of my own home. Unfortunately, though, after only four short hours of partying, my pain took over and the celebration ended. Thankfully, it was ten o’clock at night and my grandparents were ready to go to bed anyways!

According to The Plan, Christmas Day was to be spent at home with my husband. Late afternoon, we were to join my parents and Bonnie & Shay for our family gift exchange and then my mom’s side was to join us for dinner and another party. Again, the events did not quite happen as expected…

The pain from Christmas Eve only worsened throughout the night and exacerbated on Christmas Day. Gage and I were still able to enjoy our Christmas breakfast, exchange presents and tease the dog with treats; however, Gage also helped me through two TENS Treatments, a bath-salt soak and a massage using PT techniques. Pushing through the pain, I went to my parents’ house.

What should have been a fantastic holiday celebration was yet another Christmas party where I practiced my Biofeedback breathing to make it through presents, food and visiting with family. I wanted to stay; I wanted to jump from cousin to cousin, from room to room; I wanted to listen to stories about everyone’s Christmas day, to help my mom clean up after dinner and to play games with the family. That, however, did not happen. Through the pain, I managed to stay until eight o’clock. Gage helped me to the car and finally I let the tears fall.

Once we arrived at home, Gage (again) helped me set up my TENS machine, massaged the mangled muscles and settled me down with a heating pad. Then I cried some more while resting in my husband’s arms. It was that moment when we both realized that, despite ALL of the amazing progress that I have made through PT Bootcamp over the past four months, I am not healed. I still have limitations. I am still Disabled…

The day after Christmas, I was bed-ridden. The pain did not decrease until I finally saw my Physical Therapist on Tuesday and then reduced to a more manageable level after seeing my Acupuncturist on Wednesday. Two days of Christmas Celebrations, again, led to about a week of agony.

It is difficult to expect my family and friends to repeatedly accommodate my disability when even my husband and I sometimes forget that my restrictions rule my life. It is even more challenging to live my life day-after-day, holiday-after-holiday, praying for a pain-free day when all of the Specialists in my life tell me that “this is just the way that it is.”

During Physical Therapy this week, I was told that next year, I should consider only celebrating Christmas on one day instead of two. Yes, that is a possibility. However, while talking to my dear friend, Megan, I was reminded that I cannot lose hope. Megan reminded me that she was still praying for me – that there are MANY people who are still praying for me. She also reminded me that there are twelve more months of Treatment and Healing ahead of me that could be the miracle God has waiting for me. Megan also encouraged me, reminding me that my family and friends will support me through this discouraging time in my life; they will not only “mind” accommodating me to support my Disability; but they will happily do what is necessary to keep me free of pain and give my disabled body the same chance of happiness during the Holiday Season as their healthy ones.

Regardless of the Christmas Tears, I am entering the New Year with hope. We are scheduling another Team Meeting to determine a new set of goals at my PT Facility and I have already worked with Lori and Nancy on starting a new Treatment Plan, which I am very excited to begin in a few days. Most importantly, I have decided that although Christmas of 2011 was sore and sorrowful, I will hold onto the faith that 2012 will be better!

Where is the Faith?

About a month ago, Gage and I visited with friends, Faith and Jeremy after church. Like many of you who are reading this blog, Faith and Jeremy have been keeping up with my recovery and have been praying for my healing for a long time. They were ecstatic with the Performance Review from November and anxious to hear what other types of miracles had occurred since my latest Physical Therapy reevaluation…

Unfortunately, I had hit a brick wall with my recovery & Faith and Jeremy had caught me on a particularly pain-filled day. As Gage and I tried to celebrate the successes of my recovery with Faith and Jeremy, I finally admitted to Jeremy that I was having a difficult time remaining hopeful in regards to receiving complete healing. Jeremy reminded me “We can pray for your healing and we can pray that God also restores your faith, too.”

Last night, Gage and I met with our Pastor Jay. Walking with Jay into the sitting area, he noticed that I had a slight limp. “How are you feeling today, Steph?” He asked. “Okay,” I replied. Jay wanted more. “On a scale of One to Ten, what would you say was your pain level?” “Five,” I said without giving it much thought. “That is higher than usual, isn’t it?” he asked. “Yes,” I admitted.

Pastor Jay went on to talk to Gage and I about my disability. During our discussion, I finally admitted that I was losing my belief that I would one day fully recover. Jay has known Gage and I for quite a while now. Jay knows about my constant array of doctor appointments; he knows about how my disability affects our ability to make it to church weekly and consistently join Community Groups; and, Jay knows that my disability has greatly affected not only my life, but Gage’s as well.

Last night, I confessed to Jay, “People undergo surgery every day and it makes them better, but it made me worse… I can’t help but ask, ‘Why won’t God heal me?’ I can’t help but lose faith when the pain that I was promised would disappear has only gotten worse since my surgery. Why not me?”

This is a common question to Pastor Jay. He agreed, “Why not? Why is God choosing not to heal you right now when we all know that He has the power to do so?” Then Jay reminded me, “God has plans for us that we may never know or understand. God allows things to happen in our life that we may not like or want; however, it is not up to us to question God. To God, these years of pain, trial and tribulation are a blink according to God’s timeline.”

Like Jeremy, Pastor Jay reminded me to keep praying. I also confessed to Jay that I was finding prayer difficult lately. Jay encouraged me, saying, “Steph, you do not need to thank God for the pain you feel every day or the disability that you have. BUT, you can thank Him that you have a husband who loves you and wants to help care for you when you hurt, that you have made progress in your recovery, that you are provided for during this time off of work so that you can receive Treatments without balancing work, too, and you can be thankful that you have many friends and family members who recognize your limitations and support you through them.”

Today, I prayed that God strengthen my faith. Today, I thanked God for the many people in my life who have encouraged me and who have gotten me through this debilitating time in my life. Today, I am thankful for the people who read this blog with the intent to pray for me, for Gage, for our health, for provision and for the miracle of my recovery. THANK YOU!

This blog has been a great outlet for me to share with you my battles and my victories. Many of you who read it send me emails and comments, which I appreciate more than you could know… Can I ask you to take that support one step further? Please take a few minutes to sign up as a Follower on this Blog – seeing your names next to my journey will remind me that you are by my side, encouraging me along the way.

Thank you my friends!

My First Performance Review

If we were considering my Physical Rehabilitation this year as a job, one could say that I had my first Performance Review yesterday. If we were to stick with the “student” theory, then one could say that I had my first exam… AND I PASSED!

My first Team Meeting was held on August 30, 2011. If you recall, the members of that Team were: Dr. Julie (Facility President), Dr. Mark (Vice President and Biofeedback Specialist), Nancy (PT) and my husband. To note, since that meeting, my Team has grown even larger: Lori is my Exercise PT (aka “The Exercise Guru”), Molly is the Office Manager (aka my Insurance Advocate) and occasionally, we bother Leslie (aka the Women’s Health Specialist). I could NOT be blessed with such a responsive and proactive Team!

At the August Meeting, the Team presented me with a list of Six Goals. When they handed me this list, I was mortified. I did not think that I could meet even half of the goals. I was wrong! The following is the list of goals, along with my current progress on those goals (time to celebrate):

1. Stephanie will be consistent with keeping a daily pain log to monitor pain and activities.
Not only was I consistent with the daily pain log, but I kept the pain log that required me to record my activities and pain levels EVERY TWO HOURS for six weeks in a row (not missing one period, let alone day). Through these pain logs, the Team was able to determine which exercises and activities triggered pain in my body and which decreased pain. The pain logs also helped encourage me to continue my Acupuncture Treatment. With the Treatment Plan at the PT Facility and my Treatment Plan at the Acupuncture Facility, my pain levels went from an averaged Level 6 (Distress)/8 (Horrible) to an average Level 4 (Uncomfortable). What does this mean? The pain logs encouraged me by showing me that, with the help of the Plans, my pain has been CUT IN HALF in the past 3 months!

2. Stephanie will be independent in her home exercise program, completing her exercises three times a day.
At first, the word “independent” was the trigger-word for the Team. I was my typical determined, stubborn self. I wanted to do everything that I was doing at the Facility at home; however, The Team wanted to make sure that I exercised under strict supervision. It took about 6 weeks, but after steady Strength-Training Exercises twice each week with Lori, the Team finally agreed to let me exercise at home. Yes, this added a great deal to my at-home schedule. Daily, I walk up to 2 miles (which takes about 40 minutes), and each set of exercises take about 10 minutes (another 20-30 minutes per day). Additionally, 2-3 times each week, I complete a 30 minute (modified) Circuit Training Exercise and on days when I rest from the Circuit Training, I use my neighbor’s Elliptical Machine.

The best thing about expanding the Plan to my home is that I am very motivated to exercise there! These activities make me feel better! They reduce my pain (despite what one would think that they would increase my pain levels) and they stretch out muscles that tighten or spasm from “sitting around” too often. Plus, I have proven myself to The Team that not only WILL I do my exercises at home, but I will go above and beyond to strengthen my very weak body!

3. Stephanie will have a good understanding and show good judgment with pacing activities and have a good activity to rest balance.
I am working on this… I have a much greater understanding as to which activities hurt my body and what I can now do that I once could not. In my last blog, I listed ALL of the activities that I can now do that once were restricted or limited. It has been so wonderful to feel “normal” again – or at least closer to it!

My greatest struggle is that when I feel “good” I push myself. My adrenaline kicks in and I am the Energizer Bunny – I keep going and going and going! I don’t want to stop! The downside is that once I stop, by body starts screaming. However, in the past 3 months, the number of times I “over-do-it” has greatly decreased. The entire Team works on helping me stay on-track when it comes to maintaining an appropriate pace and encouraging me to rest – especially my husband. I still have stern restrictions regarding which activities I can tolerate, how often I can “play” and when I should rest, but when I adhere to such restrictions, my body is rewarded.

4. Stephanie will be independent in her nutrition and have a caloric intake of 2000-2400 calories/day for adequate weight gain of 5lbs.
On August 30, 2011, I weighed a ghastly 94.5 lbs. Since I had first hurt my back, I had lost a total of 30 pounds! At 94.5 pounds, I was dangerously underweight and my Team helped explain to me that if I did not gain weight, (since I have such little body-fat) my body will “eat” the muscle that I have been working so hard to build.

Currently, I am ½ pound from away from my (first) goal weight, weighing in at 99 lbs. According to my nurse, the lowest Ideal Weight for someone of my height and body-frame would be 101 lbs. According to my Physiatrist, the ideal weight for me to get pregnant would be 105lbs-110lbs. While I still have a ways to go, my metabolism is (slowly but surely) finally catching up with my increase in activity and is allowing my body to gain the weight it desperately needs!

5. Stephanie will understand the importance of adequate sleep for a good rehab potential and get at least 8 hours (8-10) of sleep per night.
I have ALWAYS understood the importance of sleep (to the extreme, in fact - ha); however, I was not always able to make it through a night without extreme discomfort. My body was not able to stay in one position for too long without spasms taking over. With the help of my amazing Acupuncturist, Maureen, my body has been able to maintain sustained positions (sitting, standing and lying down) for much longer than ever before!

Even though I require a low-dose of Ambien and a Muscle-Relaxer to make it through the night without waking, my body has finally developed a scheduled sleep pattern. With or without my alarm, I awake on my own after about 8-9 hours of sleep. I rarely wake in the middle of the night due to pain and the increase in my steady, scheduled sleep has helped me be more ready and able to endure the activities of the day!

6. Stephanie will be independent with an exercise program at The Facility that she initially performs before or after therapy, with time increasing as she tolerates and therapist determines.
The Team has teased me the most in regards to my Strength-Training Exercises because, when I finish, I have a very visible endorphin “high!” As stated above, twice each week, I work with Lori for at least 30 minutes prior to my pain-management PT sessions with Nancy. I can now easily complete a difficult Circuit Routine, I can maintain endurance on the Exercise Bike for at least 12 minutes, I am steadily increasing the weight used for exercises and we are now working on ways that I can learn the Equipment so that I can join a “regular” gym and increase the frequency of strength-training exercises that I complete (independently, outside of the facility) each week.

* * *

As I said, I met with Dr. Julie yesterday for the reevaluation. Dr. Julie had me complete four activities, four “bursts” (sets) of each. The activities tested my ability to: lift from below the knees, pull at shoulder-level, push forward (again, at shoulder-level) and push/lift above my head. After calculations, Dr. Julie determined that I was strongest when lifting and weakest when pushing. This type of reevaluation provided The Team with quantifiable data that allows them to not only determine areas of weakness (to target during Treatment), but it also gives The Team measurable data to compare when I complete reevaluations in the future.

As always, after the reevaluation, Dr. Julie and I had a consult. She told me that she was “thrilled” with the results and “very impressed” with the incredible progress that I have made on The Plan in less than three months!

After such a wonderful reevaluation, Dr. Julia and I talked about “what the future holds…” Last month, Lori and Nancy braced me with the hypothesis that I will likely not be able to return to work full-time in August; however they felt confident stating that I would be able to maintain a part-time job. After talking to Dr. Julie, and her review of the reevaluation results and progress that I’ve made since the last Team Meeting, Dr. Julie said that there is a strong possibility that I CAN tolerate and sustain a full-time job. However, Dr. Julie fears that my role as a Special Education Teacher may be too difficult for me to withstand given my physical limitations and the severe increase in expectations and requirements that a Special Education Teacher faces on a daily basis.

To explain, Special Education is not “what it used to be.” My role as a Resource Teacher in a Public School has changed greatly in the last five years (even more). A Resource Teacher was once known as a Case Manager/Teacher for students with minimal disabilities. Now, the school system is moving more towards inclusion and less towards dividing the students with disabilities based on needs and support. In terms of inclusion, this is amazing! In terms of creating learning environments that are beneficial for all students, my personal opinion is that, while there are great benefits to including students who have severe disabilities in a general education environment, I have found (in my own personal experience) that students who require a substantial amount of Special Education services would best have THEIR educational and emotional needs met in an environment designed specifically for those individual needs. That environment is not always in the Resource Room or the General Education setting. (Again – this is just my personal opinion based on my total 9 years of experience in the educational setting.)

How does this affect me? Dr. Julie feels that, due to the increase in demands in the world of Special Education, I would NOT be able to meet all of the needs and job requirements as a Resource Teacher. Granted, I still have NINE MONTHS of recovery so completely ruling-out returning to my job a Special Education Teacher is very pre-mature for now. Nancy, my case manager and confidant, assured me that it is WAY too soon to start thinking about what I will or will not be able to do as a career woman almost one year from now. She also is a believer, and encouraged me to continue to pray – pray over my body, pray over my recovery, pray over my role as a wife, pray over my future children (and ability to have them) and pray as to where God will lead me in terms of my career and future.

I may not know what the future holds, but I believe that it is bright. The entire Team is amazed at the tremendous amount of progress that I have made in less than THREE months. Can you imagine what NINE more months has in store for me? Please continue to pray that this is just the beginning of the miracle God is working in me! I know that he has not forgotten me! I know that God has not left my side; He is at every appointment, in every pill and speaks to me through every person in my life who supports and encourages my healing!

Your Prayers Worked!

Matthew 7:7 (NIV)
7 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.

I do not know how to thank you for all of your prayers... God heard them! Within 48 hours of writing my blog and asking for your prayers, I got a call from the Insurance Department. I was told that I received authorization for an extension for Physical Therapy appointments. I get 20 ADDITIONAL appointments to cover the months of November through the end of December. Starting January, I also have 60 PT visits to use during the next fiscal year.

I have been told by my medical team that this truly IS a MIRACLE! Your prayers were not in vain, friends. I promise to continue to work hard on my recovery and to continue to be the example of God's healing on earth!

Thank you for believing with me!

Miracles and Mistakes

Hello Prayer Warriors,

I am in desperate need of a miracle... To keep things as simple as possible, I will start by explaining that my employer, SSD, made a HUGE mistake. In August (when the new school year started), I contacted the Insurance Department to let them know that I was on Long Term Disability and; therefore, I was unable to attend the Beginning of the Year Orientation. I asked a woman in the Insurance/Benefits department to specifically tell me when the GHP (Insurance) plan started and ended for this “plan year” (which has always been different both from the fiscal year and different from the school year). I was told (in writing) that I had 60 Physical Therapy (PT) visits to use until NOVEMBER 1st - the start date of the new plan.

Unfortunately, the woman with whom I spoke was new to the department AND SHE GAVE ME THE WRONG START DATE. When my PT Provider called GHP this week to get Authorization for my PT visits for the month of November, she was denied. GHP told her that the start date is JANUARY 1st, NOT November 1st and that I was out of visits until the new plan started.

Basically, if a miracle does not occur, that means that I will have to go TWO ENTIRE MONTHS without any PT treatments. Currently, I participate in 4 PT appointments each week: 2 strength training and 2 pain-release treatments, which I attend back-to-back twice each week. The PT Team with whom I have been working has been amazing; they have gone above and beyond to work on my body and with all of my restrictions. Against many odds, they have been able to help me achieve a GREAT amount of progress.

Since I started my new Treatment Plan, I have made SO many gains! I have:
- gone from walking 1/10th of a mile to walking up to 2 MILES each day
- I can complete a 30-minute Circuit Training routine several times a week
- my endurance for "activities of daily living" has increased from 20 minutes to 2+ hours at a time
- my pain levels have dropped from an averaged level 8/10 (HORRIBLE) to a a level 4/10 (UNCOMFORTABLE); I have not felt this much pain relief in years!
- I have gained almost all of the weight required of me for my 8-week goal (I am 1 pound away from my first goal-weight)
- I am sleeping throughout the night, rarely waking due to pain
- I can now exercise on a stationary bike AND an elliptical
- I went from using 0-weights to now up to 10 lbs of weight-resistance during my weight-training exercises
- I can walk my dog by myself
- I can clean most of my house without feeling incredible pain afterwards
- I can do some laundry
- I have more energy lately than I have had in years
- My serotonin levels have returned to their original levels, which means that my appetite has increased, my sleep is healthier and my mood has greatly improved
- I have completely stopped taking Narcotics and Gabapentin (the two main medications that my gynecologist told me would harm a baby in my womb if and when Gage and I are ready to get pregnant)
- I have also been able to decrease additional, non-narcotic or controlled pain relievers
- I can sit through an entire church service – my stamina for sitting and standing is improving as my body is getting remarkably stronger
- I can literally see the gains that my Treatment Plan has done for me – physically, emotionally, even spiritually.

Prayer Warriors, I want to share with you an experience I had last week… This is an excerpt from a letter that I wrote to my mother-in-law, Sandy, who has been one of my greatest supporters throughout this journey to healing:

Dear Sandy,
…
This week, I have been surrounded by opportunities to heal - and to learn about healing. The Women's Group that I met on Wednesday night devoted time for prayer, and I know that my healing was definitely prayed over by the girls throughout the week. Then, my friend Megan called me Saturday morning (after leaving The Journey, our church, for a women's bible study) to tell me that this weekend's service was dedicated to healing. Megan and I have talked several times about whether or not I feel comfortable requesting prayer at the alter-call at a service. Up until this past weekend, I did NOT feel comfortable with it. I can't explain why - but mostly, I can say that I was probably just scared... scared that I would draw more attention to my pain... scared that I wouldn't get better and that my pain would only test my faith... scared to draw attention to myself. That night, Gage and I went to church with not only Megan & her husband Steven, but with our across-the-street neighbors, Jen & Brandon. For some reason, my heart was beating outside of my chest throughout the entire service!

Pastor Darrin talked about the church's stance on healing - The Journey believes that miracles can still happen today, and that healing is one of many gifts that God still gives to believers. He went on to say that not everyone will be healed... Hearing that made me really, really sad. I thought about myself; I thought of my mom's best friend, Gracie (who has known me since birth and who I am very close to) who the doctors are telling us that she doesn’t have much time left here on earth before cancer takes her to heaven... I thought of Danielle's brother, Mark, a 29-year-old, who just had a bone-marrow transplant to help get rid of his cancer... I thought of your (Sandy's) knee injury... I thought of Buzz' heart attack... I thought of my friend, Tara's, back problems... I kept thinking of SO many people whom I wanted God to heal and I was overwhelmed with such SADDNESS thinking of all of the "broken" bodies out there with perfectly good hearts wanting to LIVE LIFE!

But then Pastor Darrin re-defined the need for healing today... He explained that God wants to heal his children. He taught me that I need to keep my faith that I will be healed. Pastor Darrin also taught me that I need to look at EVERY measure of recovery as a way that God has already worked to give me physical peace. He encouraged me to pray over every pill I take, every treatment I receive, every doctor or specialist who places hands on me... I agreed that was my new mission! I will pray over every aspect, pill and person in my life; I will believe that God will use them all to heal me!

After the sermon, Darrin left time for communion and there were many, many elders and prayer leaders available to pray for people who wanted to receive healing. During the sermon, Gage whispered to me that if I wanted to get prayed over, he would go with me. I was so overwhelmed by the sermon and my thoughts that all I could do was nod my head, not committing to one way or another… After communion, I didn't even think - I felt that God was leading me to the alter. Without my knowing it, Gage, Jen & Brandon followed. As I reached the prayer leader, I couldn't talk. Gage told me (later) that God spoke to him and told him that he needed to speak for me when I reached the alter. I didn't even look at Gage, he just extended his hand to the prayer leader to greet him and introduced me, saying, "This is my wife, Stephanie. She has suffered from back pain for many, many years. Last year, she had a spinal fusion surgery and it actually made her pain worse than it was before the surgery. She is currently on disability and she is in pain every day. We are believing for her healing." Before I knew it, I had pairs and pairs of hands placed on my body and I was surrounded by whispers of prayers, loved ones agreeing with the prayer that the church elder spoke aloud. I didn't even try to stop the tears that fell from my eyes, and when the prayer finally ended, I looked to see tears streaming down Jen's face, deep emotion in both Gage & Brandon's eyes and, when we got back to our seats, Megan embraced me in a huge hug, crying just as hard as I was and comforting me with her words. It was one of the most intense experiences I have ever had with the Holy Spirit!

Before that prayer session, I didn't realize myself how alone I feel in this; in my pain and in my circumstance.... I suddenly saw that I have been so caught up in my new PT Boot Camp schedule that most days, I just follow my routine and don't allow much time for either fear or, while I hate to admit it, faith...

As if that wasn't enough, Gage and I had our first Reike appointments on Sunday (the day after the healing prayer). Gage and I made an agreement on the way to the appointments that if, in any way, we felt the treatment was going "against" our Christian beliefs, we would stop our individual treatment and get the other person from his/her treatment, too. We walked into the building and both felt immediately at ease. An older couple, Evelyn and Jim, were scheduled to work on us. In my room, I explained to Evelyn that I was a Christian. I continued to say that what I knew about Reike was that it had some Buddist roots. I politely asked her if she prayed to Budda during the treatment. Before I could ask another question she raised her hands towards heaven, jumped, smiling and clapping, saying, "Honey, I AM A CHRISTIAN!' I use God's diving power and energy to reach you. I am just HIS vessel!" Her testimony really put my mind, body and spirit at ease...

The Reike was amazing! I explained to Evelyn that I, on average, can typically only lay on my back for up to 15 minutes without spasms and having to adjust my body. However, she was able to work on me for the entire 55-minute appointment without one spasm. As soon as the treatment began, I felt immediately connected to God. I went into a DEEP trance, praying in the Spirit and unaware of anything besides the healing that was taking place in my body and the peace that was granted to my mind. It was truly AMAZING!!!

The funny part was that since Saturday, Gage continued to ask me, "Are you healed yet?" "Are you healed yet?" I laughed and told him no, but with Gage's remarkable, innocent belief, I am waiting expectantly for my miracle...


Prayer Warriors, God started something new in me last week. I know, without a doubt, that God wants to heal me. I believe that what I am going through with SSD and my insurance company is the enemy trying to steal that healing from me. I will NOT stand for it and I ask that you take a stance with me!

I am working very closely with my PT Team to try to figure out a way to get authorization to continue my treatments without the two month break. My PT Team honestly told me that if I was forced to go two months without treatment, I would likely regress from all of the progress that we have seen; my body won’t just “sit and wait,” without treatment, I will, undoubtedly, get worse. I cannot physically afford to go backwards in recovery; I cannot face that pain again. However, I cannot financially afford to pay for the full cost of the PT treatments without the help of Insurance. I have come too far for something to stop my healing because of some clerical error!

Please pray that we find a way to continue my Treatment. Please pray that my healing will only continue. Please pray with me that the enemy is bound from my body and from any part of my recovery. Please believe with me that my miracle has started, and that God WILL finish the work he has started in me! If you have any words of encouragement or wisdom, please email or share them with me. I need your love and support more now than ever.

Thank you for your prayers and your love!

Being ONE

I’ve realized something the past two weeks: I don’t have a job. Technically, my PT Boot Camp is my job. I have received Long Term Disability this year so that I can have this time to spend in rehabilitation and I am using this time as “wisely” as I can. I attend at least six appointments each week: Acupuncture 3 x week, PT 2 x week and Biofeedback 1 x week – all in addition to the 2-3 exercise routines that I perform at home each day, the 1+ mile that I walk each night and the four forms I fill out every two hours of EVERY DAY… But, for some reason, well, for many reasons, it doesn’t “feel” like it is a job…

Recently, someone said to me, “Steph, you can do fill-in-the-blank; you stay at home.” The person who said that obviously did not know me very well, nor know my weekly schedule!

When working out my updated exercise schedule with my PT yesterday, she asked me how I was “emotionally” handling all of these changes. How am I handling this??? I’m conflicted. When I feel burnt-out from running to appointment to appointment, I try to motivate myself. There are those days when I feel like a lab-rat, someone who is just put into a room, poked, prodded, and talked at instead of talked to; however, a majority of the days, due to the amazing people who are on my Boot Camp Team, I am a part of a process leading to a better body and recovery. Many days, I can focus on the positives: since I added Acupuncture to my regimen, my pain levels have drastically dropped! Since I have completely weaned off of Narcotics, my pain levels have finally leveled-out! Since I have started my walking routine, I am able to walk almost a mile and a half every day! Since my Team Meeting a month ago, my endurance has drastically increased! Life is good! Right! Right???

My husband has been my hero through this entire experience. Just three weeks after Gage asked me to marry him, I threw out my back. On our 1-Year-Dating Anniversary, Gage was in the shower and I was in my bedroom; I bent over to get dressed and he could hear my scream over the sound of the running water as I fell to the ground in excruciating pain. Gage ran to me as fast as he could, helped me up and held me while we called his mom (aka Dr. Mom) to determine what to do next. Even though Gage had a day filled with romantic surprises for me, he spent the day caring for me and making sure that my body was comfortable. Back then, we never realized that that one day was just the beginning to many, MANY days where Gage would take care of me.

Even through the pain, we managed to plan our wedding. Three weeks after our wedding, my husband got up with me at five in the morning to take me to the hospital to have Spinal Fusion Surgery. On the first night of the hospital, there wasn’t an open bed in which Gage could sleep, so he found an open area on the floor in the lobby, placed a sweatshirt under his head and curled up with the vending machine illuminating the room. He refused to leave me.

We were told that I would be 100% recovered in eight weeks. As described in my Blog Summary, it has been 15 months (60 weeks) and I am still waiting for the recovery that I was promised. My hero, my husband, has never once blamed me, blamed the surgeons or wished regret for marrying a “broken” woman whom he would have to care for possibly for the rest of his life. Instead, he told me that he will always love me, always care for me and always be there for me – through sickness or health.

A few weeks ago, when reality hit me that my PT Boot Camp was my job for the next year of my life, I suddenly felt completely isolated. I came from being a Resource Teacher, where I was part of something Big; I was a part of a Team; I was surrounded by students, co-workers (and dear friends), parents and administrators – and I went to being a One-Woman Recovery Zone. Even though I see Nancy, Maureen, Dr. Julie, Mark and others every day, I am the patient and they are the professional. Even though I have cried to each of them, laughed with each of them, shared stories, even sympathy, with several of them – they are not my colleagues.

Upon this realization, Gage helped me grasp the idea that instead of referring to PT Boot Camp as my “job” – he told me to think of it as my Education. My Team Members are my Teachers and I, obviously, am the student. This philosophy has helped me separate the idea that I had co-workers and re-focus on the idea that this is my year to LEARN – about my body, about my healing and about how to turn my disability into just a part of my life, not to make it my identity.

Being the wonderful teacher that he is, Gage decided that I needed an Incentive Plan. When a Teacher has a student who struggles with motivation, there are many ways to reach that student, but the most effective approach is to: first, conduct an Inventory Assessment (what motivates the student?), then turn that information into a Plan where the Student is in control of her motivation, her actions and her rewards.

Last night, on our daily walk, Gage spent the entire walk determining what motivates me. When we got home, he hopped on his computer and created a Motivation Menu for me. He determined that my Motivation to attend each appointment would be helped by a Positive Incentive Program:

After 12 appointments, I can (pick one):
• Get a new song off of iTunes
• Pick out the movie (even a chick-flick)
• Download a new Kindle book
• Celebrate with Starbucks
• Enjoy an extra-long Back Rub

After 18 appointments, I can:
• Have a Free Day (have a day FREE of Pain Logs, Exercises, Appointments, Calorie Counting, etc.) Everyone deserves at least one day off a month, right?!?!

After 24 appointments (About 1 month of PT Boot Camp), I can (pick one):
• Enjoy a Manicure
• Relax with a Pedicure
• Shop for “something new” to fit my “new” body.

Not only did Gage spend his evening creating this amazing Motivation Menu (a "visual" in teacher-talk), every time I asked him, “Are you sure that this is okay?” or “Are you sure that I deserve these rewards?” or “If you tell me that I just need to suck-it-up and find my motivation internally, I will,” he INSISTED that since I did not have a colleague or even other “students” during this next year, HE would be my partner, my motivator, my colleague, my study-partner and he will be there by my side through it all. Our pastor recently told us, “Stephanie and Gage, you are one. If Stephanie is disabled, you, Gage, are disabled. When she hurts, you hurt.” I did not consider that Gage would take this declaration so literally and become my greatest motivation of all, but he did!

Last night, I realized that I need to change my mind about how I view this next year. I can be the student instead of the Teacher. I can make each of my appointments. I can continue on this path to healing. But most importantly, I have a husband who is my partner, my Team-Mate, my confidant, my inspiration and my HERO!

RESTORING HOPE

“Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all,” (Dale Carnegie).

After about a month of preparation, we finally had our Team Meeting at my Rehab Facility. Around the table sat: my regular PT, Nancy, Dr. Julie (the Facility President and my first PT), Mark (the Vice President and my Pain/Biofeedback Counselor), Gage (my husband) and myself. I came with a page filled with questions and a mountain of prayers; however, I had no clue what to expect. Even with clueless expectations, I do not think that anything could have prepared me for what happened next…

Nancy sat to my left and passed out two pages to the Team: one was an Agenda and the other was a list of six goals for me to accomplish over the next eight weeks. As we discussed each point, Gage sat to my right, intensely taking notes. I went into the meeting hoping for clarification more than anything. The summer had led the Team (including me) to a stalemate and, mostly, I wanted to know: who was In Charge of me (aka my Case Manager), what were my Treatment Goals and how would my Treatment Plan be reevaluated to show whether I was making progress? Needless to say, I received much more than a little clarification at the meeting; what Nancy and the Team handed me was the Ultimate Plan for Extreme Recovery.

We easily soared through the clarifying questions. Nancy will assume the role as my Case Manager, as she sees me twice weekly; however, Julie will see me every-other-month to conduct an FCE (Functional Capacity Evaluation) in which she will administer the first one in a week to gather baseline data and then compare each FCE that follows against the first, and previous, to monitor progress. (As the former Data Team Leader at my old job, this information was music to my ears!)

Additionally, I was told that I would be required:
- To keep a Pain Log that recorded my activity and pain level EVERY TWO HOURS. I am to log this information daily for the next four weeks. The Team explained that by doing this log, I will be helping them determine the function of my pain, my triggers, and my levels of endurance (and pain) during activities.
- To keep an Exercise Log that will hold me accountable to complete the given PT exercises daily to ensure that I am adhering to the Treatment Plan outside of the Rehab Facility.
- To gain 5 lbs over the next eight weeks; to do so, I am required to keep a Food Log and show it to Nancy every few days so that she can see that not only am I eating more calories each day, but that the calories are coming from healthy foods. The Team explained to me that I am very much underweight and this is a detriment to the Treatment Plan. Right now, my body is “eating my muscle for energy, as I have no fat left for it to use.” This is extremely counter-productive, as the purpose of treatment is to GAIN MUSCLE; without it, my body will not be able to rehabilitate.
- Starting October, I will be adding weekly Biofeedback Therapy to my regimen. Mark would like to teach me to better recognize my muscle-activity and how to control the over-use of muscles; he will also use these strategies to instruct me in multiple ways to manage my pain without medication.

I agreed to the above logs & Biofeedback, even though I knew that they would take some time to get used to completing them and to stick to their guidelines; then Nancy proceeded with some tremendous expectations:
- In addition to my PT exercises at home, I am to start adding extra exercises to my list while I am at the Rehab Facility. I will start next week by going to the Facility early and riding on the stationary bike for 10 minutes prior to my PT appointments. However, the Team would like for me to constantly add-on to these extra exercise; they want me to build-up to coming to the facility daily to do these additional exercises, and each week, they would like to add to the exercises. (To break this down, in addition to my 3 sets of at-home PT exercises, which take a total of 45 minutes daily to accomplish, and the 1 mile each day that I am currently walking, I will also be working-out at the Rehab Facility several times each week, if not daily, possibly working out up to 2 hours each day).
- (LONG-TERM GOAL:) Following the above program, by THIS SPRING or THIS SUMMER, the Team would like to see me spending 2-4 HOURS EACH DAY at the Facility (in addition to my PT appointments and at-home exercise plan). They explained to me that it would be like a simulated Vocational-Rehabilitation program, for how can they accurately determine my stamina for returning to the workplace if they do not see how much I can endure on a daily basis?

The last two parts of the program were the most overwhelming to me for many reasons. First, I have been told my so many physicians and surgeons that I would NOT be able to return to work NOR would I “get better” that it is enormously difficult to imagine that my tired, aching body would actually be able to attain such lofty goals. Second, THEY BELIEVED IN ME! The Team continued to believe in me even when I gave up on myself. I did not think that I would EVER be able to put in that much effort into a day’s span ever again, but The Team believes that I can – and they are willing to work very hard with me every step of the way to see that progress is made and that rehabilitation will be a reality for me. Yes, it will take a considerable amount of time and effort on my part, not to mention dedication and a severe mind-shift; and no, 2-4 hours each day is not full-time, but it is at least a start. This is the start of the rest of my life…

When Gage and I returned home after the meeting, I was still in shock. I was still in the “I cannot possibly do ALL of those things” phase. However, Gage showed me another side – he said that the meeting gave him hope. He said that hearing their goals for me made him believe that I could achieve them, that I could get at least “a little better” than I am now. Gage promised to help me every step of the way, even if it meant helping out more around the house if I put in a “long day” at the Facility, exercising at home with me when I had to do my daily routines and sacrificing financially so that I can attend all of the PT appointments ahead; Gage even signed up to the online Fitness Website that I found to log my daily calories so that I didn’t feel like I was “all alone” in my tasks.

With so many people believing in me, it’s hard not to start having faith in myself, too! Most importantly, I was reminded that God hadn’t forgotten me. For so long, I had felt left behind… I had felt as if all of my faith had gotten me “nowhere” and that I was a “broken” human being. Yesterday, with so much hope surrounding me, I was reminded that God has a plan for everyone – and he will use anyone he can to carry his plan out.

Nancy’s exact goals for the next eight weeks for me are:
1. Stephanie will be consistent with keeping a daily pain log to monitor pain and activities.
2. Stephanie will be independent in her home exercise program, completing her exercises three times a day.
3. Stephanie will have a good understanding and show good judgment with pacing activities and have a good activity to rest balance.
4. Stephanie will be independent in her nutrition and have a caloric intake of 2000-2400 calories/day for adequate weight gain of 5lbs.
5. Stephanie will understand the importance of adequate sleep for a good rehab potential and get at least 8 hours (8-10) of sleep per night.
6. Stephanie will be independent with an exercise program at The Facility that she initially performs before or after therapy, with time increasing as she tolerates and therapist determines.

Friends, loved ones, believers, please pray with me that I will accomplish these goals. Right now, more than ever, I need your strength and encouragement. Thank you for not giving up on me; thank you for your hope.

Sweet Dreams

Last night, I had a dream… It was as dreams are, fuzzy and out-of-sequence. I was at a hospital and I realized that I was on a waiting list. The list was short, and I was anxiously praying that my name was the next to be called. One name rang from a nurse’s mouth and a woman rose from her chair and disappeared from the room. I noticed my heart beating faster. Another name was called and again, a woman arose and was gone. I was heart-broken…

Next, my dream took me, floating, in an operating room and hovering along the ceiling. Three bodies lay on surgical beds, draped in paper sheets and surrounded by monitors and people in scrubs. The body in the middle was new; she was not on the waiting list. She was a car-crash survivor, although she was barely surviving. The two bodies on either side of her were the two women from the Waiting Room. As I drifted above them, I realized that each woman was undergoing back surgery. The survivor was receiving parts of spine from the other two women; however, at the end of the surgery, all three women were healed. All three women were better. But not me… My name was not called. I was still in pain…

* * * * * *
This dream could be analyzed to pieces; however, there were two distinct things that I realized when I awoke, breathing heavy and heart beating out of my chest. The first was that I dreamt that I was in pain. This was highly unusual for me. Even though I threw my back out over two years ago (being partially crippled since then), my dreams are my escape. In my dreams, I can run, I can play tennis, I can do anything you can do…. And, I am NEVER in pain. Secondly, I awoke sad, really, really sad…

* * * * * *

To bring you up to speed, instead of returning to duty on Monday, August 8th, with the rest of my Special Education colleagues, I had finally gotten an appointment with one of the (other) top spinal surgeons in the nation. This surgeon was referred to me by Dr. Julie. It was her very strong recommendation that I get a second opinion regarding my fusion. Dr. Julie wanted the Fusion OUT; she felt that it was “too restrictive” and that if removed, she could manually manipulate my body through strenuous Physical Therapy and exercises and, hopefully, decrease the pain the I felt every second of every day.

My “bargain” with Dr. Julie was that, if I was granted Medical Disability, I would get a second opinion from HER Surgeon (aka “The Surgeon with the Heart”) and consider another surgery. I never break a promise.

Because I work with several people in Dr. Julie’s office, I regularly update each of them on my current progress, needs, pains, improvements and status. The following is the email that I sent them after my appointment:

Hello Wonderful Team!

I know that we briefly chatted yesterday, but I wanted to give you the official "low-down" about how my appointment with The Surgeon-2 went on Monday (August 8th).

Dr. Julie, as always, you were right - he was "a surgeon with a heart!" Gage couldn't get there until 3:30 pm, so The Surgeon-2 extended his office hours (by 30 min) to see us, and we never once felt rushed out the door!

X-Ray Review: Surgeon-2 agreed with Surgeon-1 that the Spinal Fusion looked "solid and secure" and that it appeared as if the fusion "took." He said that, according to the x-ray, the surgery was successful. He also said that the bone around the fusion did appear to be growing, so with or without the "hardware" the fusion had "taken;" therefore, was permanent.

The Screws: Gage and I explained to Surgeon-2 that we were unaware that I was getting "additional" screws in my body (in addition to the fusion) and asked him about them. Surgeon-2 explained that there are two ways in which a surgeon can "go in" for Spinal Fusion Surgery: through the front (stomach) and through the back (spine). Surgeon-1 chose to go in through the back because "biologically, it made more sense to use this approach." According to Surgeon-2, when doing a Spinal Fusion through the back, Surgeon-1 has been a "leading surgeon" to promote and implement adding the iliac screws. Surgeon-2 further explained that the iliac screws were designed to support the S-1 part of my spine. He said that, mechanically and structurally, I needed the screws to support the Fusion and that if they were to be taken out, the Fusion would not be supported and it would likely lead to dangerous problems.

Can the Hardware be Removed? Yes it can, but Surgeon-2 highly did NOT recommend doing so; Surgeon-2 also informed us that Surgeon-1 had written a paper on the dangers/risks of removing any hardware after a Spinal Fusion has been done on a patient. Furthermore, Surgeon-2 explained that "even if I were to remove the rods & screws, because the fusion was a 'success' and the bone-growth has occurred, the fusion itself would still be set; therefore, I would still be Fused." He explained that the Extreme Case would be for him to remove ALL of the hardware AND "break" my back to "start over" - but he would NEVER do that; it is too painful and the risks are too great.

After a physical exam, Surgeon-2 explained that the only thing he would even consider taking out was the right iliac screw IF it were protruding from my back and very tender/painful to the touch. It is not; therefore, he would not do the procedure.

Other Surgical Options? Surgeon-2 told us that he does not feel that there are any other surgical options for me. He spent a lot of time reviewing Surgeon-1’s notes. He saw all of the non-invasive and invasive treatments that I had tried prior to surgery, including the discogram. Surgeon-2 explained that the discogram clearly showed that the discs that were "likely causing the pain" were the L-4 & L-5 and that he supported Surgeon-2’s decision to proceed with the fusion. Unfortunately, it did not reduce my pain; it actually increased it.

Why do I have pain? Surgeon-2 does not know... We discussed my scoliosis. He explained to us that because I have a rotated spine, my muscles and bones are rotated, too; however, he does not think that this "should" cause me pain. Surgeon-2 explained that just because someone has scoliosis (or Degenerative Disc Disease), does not mean that they are in pain - even though I have both and I am in pain.

I then told Surgeon-2 about "the knot" (the notorious trigger that you all know about on my left back/side); he examined it and said that he thought it was just "rotated muscle" and that it "should not be causing pain." I told him that it (the trigger) is, to me, the greatest area where I feel pain, yet he did not have an explanation as to why...

Non-Surgical Options: Surgeon-2 and I discussed my current Physical Therapy & Pain Management Treatments. I explained to him, as best as I could, that Dr. Julie wanted me to see Surgeon-2 to look at Plan A & Plan B.

Plan A: Have another surgery to remove the hardware and then work with PTs for rehab.

Plan B: If surgery was NOT an option, Dr. Julie & The Team would help me "re-wire" my body (muscles and nerves) to reduce the muscles that are over-compensating for the muscles that are, for some reason, not working hard enough.

Surgeon-2 said to go for Plan B and to focus on Physical Therapy and Rehabilitation.

What about the pain? Surgeon-2 did not deny that there was a lot going on with my back and that, unfortunately, I am in a great deal of pain - even more now than before I had the Fusion Surgery; however, he did not have any answers as to The Source of the pain. He told me that I need to "learn how much (physically) my body can handle and then learn how to live with the pain."

Now What??? Team, I need you now more than ever! I am discouraged and I need reassurance - I cannot live the rest of my life "getting by" and in this much pain! I believe that, with all of the great minds working together at this office, you CAN help re-train my body to help me find a New Normal. I promise to put in the work - I just need your dedication to create a Treatment Plan for us all to follow....

Mark (Pain & Biofeedback Counselor) and I talked about creating a Treatment Plan that would help me physically and mentally throughout this process. I have discussed this plan with Dr. Julie and the other PTs. Yesterday, my regular PT, N, said that she would meet with you two (Mark and Dr. Julie) to discuss this further. I am anxiously awaiting your thoughts!

Please let me know if you have any questions about the information that I have given you. I will also try to get a copy of the dictated notes from Surgeon-2 to share with you. You are a wonderful Team of people - thank you for dedicating yourselves to helping give me the hope that one day I will have less pain and live a somewhat-normal life!

Thank you!
~Steph

* * * * *

My appointment with Surgeon-2 was “bitter-sweet” (as my husband called it). Sweet: because I was absolutely terrified at the thought of having another surgery. We now know that surgery is not an option; therefore, hopefully, Dr. Julie & the Dream Team can create a plan to rehabilitate me without a knife… Bitter: because I have seen two of the TOP Surgeons in the nation (literally, thanks to many strings being pulled in my favor) and yet neither of them have any clue why I am in so much pain or the source of the pain itself.

Thankfully, my Dream Team is not giving up. We have a Team Meeting (my 2 PTs, Mark, Gage and I) in a few weeks where we will create and discuss expectations, goals and a Treatment Plan. Additionally, N and I have a new PT plan to “tide us over” in which I have a daily, rigid regimen of exercise, stretching, massage & a short walk (along with additional physical activity) to complete in addition to going to the office twice each week for myofascial release.

* * * * * *
Before last night, I thought that I was “okay” with not having surgery again… Am I? Is some part of me desperately seeking a quick-fix? Do I fear that I will “never get better?” I guess I’ll just have to continue to put my faith in God, in His Plan, and see where it leads me… Sweet Dreams…

It Comes in Threes...

The past two months have literally been a blur and it is difficult to know where to begin… Most importantly, I apologize for not writing sooner. I appreciate more than anything those who read this blog, who pray for me and who support and encourage me through this battle I have fought for way too long. I recently learned that my journey has been helping an old friend’s mother who has been dealing with her own fight with physical pain. I told Gage when I first began this blog that if I helped at least one person, my purpose for taking the time to share my story would be complete… I hope that my journey somehow, someway helps you as much as your support has helped me!

I ended the school year with packed-boxes and tear-filled good-byes. I could not (and, technically, still cannot) announce that I am “officially” not returning to work next year until the paperwork through the school district goes through. I have given my personal contact information to those parents whom I have been a part of their lives for at least the last three years, helping them diagnose their child with a disability and then teaching them that special education is merely a new way of life (just as I have learned with my physical disability). Despite all of my efforts to fast-track the Human Resources process, the HR Department has a rule that I cannot apply for a Long-Term Leave of Absence until 30 days prior to the next school year. The process continues…

On the other hand, I have received official word that my Long Term Disability has been approved – Praise God! I have to admit, I was terrified that it would not… Friends who have had family members with serious health problems filled my head with horror stories of having to “fight the system” and were refused Disability the first (or more) times in which they applied. I thought to myself time and time again, “why would I be any different?” However, I was approved the first time I applied! And, not only was I approved, but the woman who handled my case at the Disability office knew of my Intermittent, Short-Term FMLA leave and was able to BACK-DATE my disability so that I am able to receive some compensation for the days that I missed work yet went without pay. When I learned this, I realized that those days that Gage and I spent hunched over the budget, digging deeper and deeper into our savings to “make-up” for all of the days that I HAD to take off of work would be over… God was providing for us!

The provision didn’t stop there, however! Another thorn in our side for the last 14 months was our empty, Kirkwood house. The house had been on the market since the month before Gage and I were married in 2010. In those 14 months, we only had one nibble from a buyer (who, obviously, did not buy the house). As each month passed, Gage and I asked ourselves and prayed to God that either a buyer would come our way or that God would grant us the wisdom as to make a decision as to what moves to make regarding the house. We considered taking out another loan and adding an upstairs to the house (which is barely 700 square-feet and is half of the size of the home we currently rent). Knowing that Gage and I want to “expand” our family as soon as I am able, we strongly believed that living in that house (in the condition it was in) was not an option for us. After researching the cost of construction and weighing our options, we also realized that no matter what we did to add to the house, it would never be our Dream Home. Furthermore, we also realized that we could not afford to let the house “sit” empty in Kirkwood any longer; however, the idea of being a Landlord was not something that interested Gage nor I… Despite our reservations, we finally felt that our last and only option was to rent the house. Thankfully, both Gage and I have dear friends, Nick and Danielle, who are in the “business.” Both Nick and Danielle took the time to walk us through the process and help reassure us that not only would this be a strong investment for us, but it will not be the terror we anticipated. After two weeks on Craigslist, we finally found the perfect person to live in the house and to take the burden of those mortgage payments off of our shoulders. More Praise!!!

They say that “bad things come in threes;” however, I believe that God knew that I needed a miracle – and I needed it BAD! In the time-span of less than one week, we had three wonderful things happen in our life: I received approval from Guardian, we rented our Kirkwood House and we began to start a “new life” with our family members and friends, thanks to the freedom of less-work (aka “less stress).

Even though things are looking much brighter, I admit, I did face a few physical battles to face along the way…

About one week after school finished for the year, I began noticing abnormal numbness in both of my arms as I slept. The numbness was isolated from my shoulders to my fingertips and, at first, they felt like my hands were “asleep.” Unfortunately, the strange condition only got worse. Within a week, the numbness had turned into stabbing pain. And, my two Physical Therapists (whom I turn to for everything) were both on vacation. Despite the efforts of my substitute PT, she actually threw my back out in an effort to try to help me with my new problem-areas. At that point, I had gone three weeks getting barely any sleep and the numbness/stabbing pain was also happening during the day as well as throughout the night. I had to forfeit PT for three weeks and make an emergency appointment with my Primary Physician to further investigate the pain and seek relief.

Fortunately, I have the highest regard for my Primary doctor and he helped both calm my fears and treat the problem. According to him, I have a pressed nerve in my neck which is causing the problems with my arms at night. After pin-pointing the nerve (C7), the Doc then ran a series of strength and neurological tests on me and determined that the problem (pain and pinching) should decrease within the next six weeks. To help with the pain, he prescribed a very specific nerve medication (to be taken at bedtime) and told me to check back with him in about a month. Within a few days, I was already sleeping more and more throughout the night and, thankfully, I have slept throughout the entire night for the past three evenings.

I admit, I was very worried when these new symptoms (and the new pain) started showing its ugly face. I could not imagine life with yet another physical problem! Nor, could I continue with the sleeplessness pattern that was developing. As with my back and hip pain, the more arm-pain I endured throughout the night, the less I slept. The less I slept, the less serotonin that my body created. The less serotonin, the more agitated I became and the less I was able to eat. I found myself terrified and trapped in the same vicious cycle that I finally felt I had finally overcome months before! I cannot be more thankful for the quick and precise resolve I received from my Primary doctor!

I have my first Physical Therapy appointment with my “regular” therapist this afternoon and my back cannot wait – three weeks without my PT has wreaked havoc on my back! Even though I knew that I had to prioritize my pain and treatment, I have had to suffer from massive knots in my left side, throbbing pain in my left hip and aches in my left oblique. My poor husband has had to extend his daily massages from 45 minutes to, some days, up to two hours (due to the extent of the myofascial pain in each area – in addition to neck and shoulder massages before bed to help relieve the pressure from the pinched nerve). We are both praying that after today’s PT appointment, he can take a break from “treatments” – at least for today!

Regardless of the pain and new problems, there have been some physical positives to my time off of work! I have increased my exercises that I do at home (at least 30 minutes of core-training, hip rotation and multiple stretches) daily – and I have even added a small amount of hydrotherapy to the regimen (and am looking into acupuncture – if I can afford it)! One of the exercises that I have missed the most has been walking with Gage and Lady around our neighborhood. I have finally gotten permission to add a VERY small amount of walking to my routine. Unfortunately for Gage, due to the hot weather, most of these walks have taken place at our local Target (but I think he secretly enjoys them – he did get a new summer wardrobe out of the deal ). Additionally, before she left for vacation, I had a special appointment with Dr. Julie who told me, “Steph, when I first saw you in January, I honestly only thought that we could get you to recover 50% AT BEST. However, I was wrong. Having not worked directly with you for three months, I can step back and truly see your progress. Your trigger spots are much smaller; your sensitivity has decreased; your stamina is much greater than I anticipated and your fluidity & mobility are impressive. I firmly believe that with this year off to recover and rehabilitate, you can and WILL get better.” Just to clarify, Dr. Julie further explained that “better” did not mean maintenance-free for the rest of my life; better can be defined as: one day, I will be off of daily pain medication, I will not require physical therapy daily at home and twice weekly at the Rehab Center, I may not be running marathons but, hopefully, I’ll be able to run across the street… Physical maintenance will always be a part of my vocabulary, physical restraints and (some) limitations may be an intermittent part of my life, but, one day, I will live a life that is not Pain-Centered.

Thankfully, and I believe with all of my heart that it is God’s doing, I am getting better! I also am grateful that, along with the process of healing, I am gaining a LIFE back. In the past four weeks since school has been out, Gage and I have: joined a church (weekly) Community Group, seen his family & mine several times, spent time with friends (both as double-dates and on our own), gone on a few dates of our own, we have planted a vegetable and flower garden (also winning the Turner Tomato Contest of the Year), I have finished a scrapbook and, most importantly, Gage and I are in the process of working with both my counselor and a marriage counselor on finding a “New Normal” for our life – one that meets my physical needs as well as BOTH of our emotional needs for a balanced well-being and marriage.

For now, the Journey to recovery continues… And even though I have had a few minor set-backs, I feel like I am, day –by-day, gaining a sense of “life” back.

Oh, the Places I Didn’t Go…

We’ve all read Dr. Suess’ book, “Oh, the places you’ll go,” right? Well, unfortunately, this year, Gage and I have started to take inventory of ALL of the places we have been unable to journey, due to my physical condition…

To bring the crowd up to speed, I have now received the official classification of Failed Back Syndrome. I am not sure what this means, I just know that it is the label placed under the Diagnosis portion of my Long Term Disability paperwork completed by my Medical Team last month when we finished the first round of forms (in which we are still waiting approval).

Failed Back Syndrome does not mean that I am still not a Chronic Pain Patient. It does not mean that my Scoliosis has been cured, that my pelvis is now even, that my Degenerative Disc Disease has disappeared, that my legs are now the same lengths or that my left hip is not still sprained… It is merely the new-and-improved brand to my ever-regressing body.

Months ago, Dr. Mark (my Biodfeedback Specialist and Pain Counselor) expressed to me the urgency of grieving all that I have to, for now, let go. Dr. Mark required me to live in the NOW. He wanted – he still wants – for me to have hope in the future, but to not set myself up for disappointment by expecting things of myself or my body that is absolutely, physically impossible. What is on the Don’t Do List?

Oh, Steph, Don’t Go THERE… I cannot:
- Bend or lean forward beyond a 30-degree angle
- Push, pull, carry or lift anything weighing more than 5-10 lbs
- Sit for more than 30 minutes
- Stand for more than 30 minutes
- Go up or down stairs
- Walk, run, jog, or ride a bike
- Exercise (beyond the few PT exercises and stretches allowed)
- When I am sitting, I must have lumbar support, arm/side-support, a cushion under my bottom and a foot stool because my knees are to be at an angle higher than my hips; when necessary, I am only to cross my right leg over my left and I am NOT to lean-in to one side of the chair or the other.
- When standing, I must wear certified tennis shoes with a heal-lift in my left leg; when available, I can lean on a wall for support; however, I cannot lean forward, for that will negate the “do not bend forward” rule.
- When lying down, I must have a pillow under my neck, support pillows (or sensory input materials) on both sides of my body, a pillow under my knees when lying on my back or a pillow between my legs and under the curve of my side while lying on my back; additionally, I was told that I’d “be better off sleeping with a knife in my chest than laying on my belly” at night. Hmmm….
- If I must climb a stairwell, I have to use the handrail and absolutely NO skipping of steps (duh!).
- I cannot go even 1 day without PT – I can receive such therapy from either my Specialist or my husband, whom has attended several therapy sessions and whom my Physical Therapists have taught to manipulate my body “enough” to get me to the next session.
- Close your eyes folks, because I even have a pamphlet of how to “be” with my husband without breaking any of the above or doctor’s prescribed rules.
- If I must walk, it needs be on smooth land, preferably pavement or concrete.
- I must stay-in and rest on a work-night, no exceptions.
- My body requires hours and hours of sleep each night.
- I am required to spend my FMLA days seeking relaxation, NOT finishing up school paperwork, picking up the house, helping with dinner or doing the dishes.
- Traveling has not yet been an option.
- If I do attend a social function – or leave the house – I must continue to adhere to my rules, regardless of the place or people and my aptitude usually expires after about only four hours (upon which I turn into a pumpkin and must be carried home before I break more than my glass slipper).

How is one supposed to survive under such critical stipulations? In my case, I have had to learn to say no…

This year, I Just-Said-No to:
- My 30th Birthday was the first year I was unable to see my parents on the actual day I was born because it was my first day back to work and I was in so much pain we had to cancel my big birthday dinner.
- Gage and I had to stop attending church every week because the sitting in a two-hour service was too difficult on my disabled and rule-bound body.
- My doctor restricted me to a 3-day work week, and would have decreased it even more if it were possible to do so without the fear of me losing my job.
- We could not travel to North Carolina this New Year’s Eve to visit my in-laws, as per our new tradition.
- I did not see my mother on Mother’s Day because my doctor told me that it was too dangerous for me to attend a parade.
- I had to stop meeting with my Women’s Group and my Accountability Partner on a regular, scheduled basis because my body grew too tired to keep up with any sort of an after-work life.
- I could not attend my best friend’s Winery Birthday Bash because the location was about an hour away and that was considered “traveling.”
- Spontaneous plans are not an option, for there is too much prep-work involved in getting my body ready for even just a short visit with friends.
- We made it to one nephew’s baptism but couldn’t stay for the brunch; we had to miss another nephew’s baptism but made it to the after-party.
- I missed my dear friend’s wedding last August because my doctor did not release me to travel so soon after surgery.
- I have missed the Turner Annual Float Trip three years in a row.
- I have missed seeing my family on almost every one of their actual Birthday’s (per custom) this year because each date happened to fall on a weeknight.
- I could not attend a former student’s (and someone very, very dear to my heart) funeral because I was in too much pain after attending the visitation the day before.
- Gage and I had to start saying “no” to Sunday Dinner at the Dodson’s.
- I gave up my ticket to the Fox Theatre last December because I was not able to sit for that long in those theatre seats.
- Gage and I had to miss Christmas Day with our families because I “over-did-it” hosting Christmas Eve at our house the night before.
- I was unable to travel to my Nona and Papa’s house for their Holiday at the Lake party.
- Date-Night at the Dodson House actually means Blockbuster and take-out, served on the couch and in pajamas.
- We stopped going to the movies unless it was an afternoon show (aka vacant) where I could bring a pillow and literally lay across a row of seats.
- The list is endless…. Baby showers, game-nights with friends, coffee with the girls, shopping with my sister, annual winery trips, graduation parties, birthday parties, double-dates… I’ve missed them all…
- This year, I have sat at home, alone, many-a-nights while my husband attended house-warming parties, Birthday gatherings, Men’s Group Meetings and family dinners without me because these events fell on my “no” nights…

I am not a woman who comes from a place of NO… However, to protect my body, I have had to adhere to these stern restrictions. What happens if I “break” one of the rules? PAIN. STOMACH-CHURNING, GUT-WRENCHING, BODY-THROBBING, TAKE-ME-TO-THE-HOSPITAL PAIN…

Unfortunately, not everyone in my life has been understanding of my limitations. Some people are in denial. Some do not grasp the magnitude of my situation. Some prefer to pressure their own agendas, perhaps to see if I can be swayed or even, dare I say, bullied into committing to an attendance even though my doctors have advised otherwise…

Recently, someone close to us expressed to Gage, who regretfully denied an invitation on our behalf, that he was “enabling” me. Merriam-Webster’s Dictionary defines enabling as “to make possible, practical, or easy,” (2011). Looking at this definition, one could assume that this person meant that Gage was trying to make my currently, physically-limited life less, well… limited. One could suppose that this person wanted Gage to allow his wife to live a somewhat-capable life even though her body was constricted. One could even presume that this person admired Gage’s commitment to the “for better or worse” part of his vows and respected Gage’s selflessness in such an inconvenient and suppressed situation. This person, however, did not describe Gage in such an endearing way…

To honor both my husband and the person whom claimed Gage to be my Enabler, I immediately discussed the accusation with two of the Specialists on my Medical Team. I had never thought myself one to take advantage of others, nor had I believed myself to hibernate from a social life. However, hoping that that charge against my husband came from a place of love, I investigated its claim with those who have been working both with me and on my body for the past seven months.

Upon hearing my concern, my primary doctor replied, “The attitude expressed by that person is one that I have to deal with on a regular basis,” she began, “As I said, this is an attitude – one in which many, many people have toward patients and people with chronic pain…. The issues here are complex and difficult. It is sadly common for health care providers (and others) to discount pain, and even more common to discount chronic pain.

By definition, chronic pain is that which has outlived its usefulness as a signal of tissue damage. Chronicity creates more pain and actually changes the physical structure of the ascending pain pathways which alters the endogenous pain modulation system (the system that helps you manage your own pain). Unfortunately, currently, we are not smart enough to measure this, so even more unfortunately, many physicians think that if they do not know what the source of the pain is, that it must not actually exist.

This is a problem with the limitations of medicine. Then, if you cannot measure it, and you cannot effectively treat it, it becomes much easier to deny its existence or to "blame the patient" which is what it sounds like the person in your life is doing.

There are a number of studies about this. One found that the higher the pain-scale rating the patient reports, the less likely they are to be believed, and the higher you go on the medical 'food chain’ (surgeon versus therapist) the less likely the patient is to be believed, even in light of a known, extremely painful condition (this is why cancer pain is so under-treated). This makes it very difficult for other-treating professionals (like physical therapists or other specialists) to effectively treat patients – and it is devastating for the sufferer. Furthermore, it is unfortunately not uncommon for those that are trying to support the patient to be labeled Enablers,” the doctor explained to Gage and I.

When I then asked my doctor what the most appropriate reaction to such an accusation would be, she explained, “What might be more helpful to you is to deal with the reality of this; to do so, you are going to have to find those who are supportive and to try not to expect much out of those who are, for some reason, not. I understand that this is not fair – and is very difficult – but it is the sad reality. I wish that I could offer you something more helpful, but my experience with this is consistent. My job is to help you as much as I am able, to help you get your needs met within a sometimes hostile medical environment.... this is why I want you to write about your experience. The system is very broken, to the detriment of decent patient care…”

Even though Gage and I were validated by my brutally honest Team of Medical Advisors, our hearts still ached… There is someone, possibly more people, in our lives who do not only understand the physical pain in which I endure every day, but who deny its existence and; therefore, disagree with the way in which Gage and I are advised to manage our circumstances.

Gage, my beloved husband, lives with me daily and only understands pieces of my pain; however, he never denies its existence nor does he deny me help, patience or kindness. As a Christian woman, I have learned that I cannot make others believe in God as I do – for that takes individual faith that only comes from the Lord and from within. I just wonder what it will take for those important people who are in our lives to believe in Gage and I enough to not just walk away from us during this desperate time of need, but to stand by our side through it all…