I am The Voice of Chronic Pain - Part Two: Friendspectations

In my last blog, I explained that: What many people do not realize is that when one person in a family has a chronic condition, the family has a chronic condition. This plays true for close friends and well-known people in your community, too.

I have been very blessed with having a plethora of family members and friends encourage me all along my journey. However, this particular blog is difficult for me to write…

One of my closest friends once said to me, “...humans have a tendency to measure people up to their own standards OF THEMSELVES. And if that person ‘fails,’ we feel slighted in some way - that they didn't meet our expectations.” I am the first to admit that I have admittedly unrealistic high expectations for myself. That being said, I also have impractical and idealistic expectations for those around me, too. This has undoubtedly caused me to feel insult throughout many stages of my disability – these expectations that I place on those around me have ultimately caused me to hurt myself…

My wise friend continued, “It's not someone else’s job to meet my expectations of myself. It's my job to learn each as a person and appreciate the goodness in each of them. So even though you feel that someone is not as good of a friend to you as you are to them - you can't hold that against them. That is not the standard they hold themselves to (obliviously). You can show them how to be a good friend by example... but [if] every time they disappoint you, you hold that against them, THAT IS YOU not being a good friend to them.”

Hmmm….

I had to learn a lot about myself the hard way throughout my disability. When I first had surgery, I literally expected the world to stop; I assumed that because I was undergoing The Knife, every single family member and friend in my life would stop their lives to help me (and Gage) with our new challenges. I NOW understand that those expectations were completely naïve; however, that was my truth. That also led to many of my heartbreaks over the past few years.

I will write about how family and friends can better support, help and encourage their loved one who is in chronic pain, but this blog is specific towards expectations, or Friendspectations. Life would be wonderful if every family member and friend loved us the way that we wanted to be loved. But, that does not always happen. Conversely, it is important that we ask ourselves: How often do we actually meet the expectations of our loved ones?

When I first threw out my back, I expected my loved ones to be considerate, sympathetic and patient with me. I do not think that these are unrealistic expectations. However, as my condition worsened, my expectations for those around me amplified. I definitely created a hierarchy in my mind regarding who would help Gage and I and how. I realized that I divided those close to me into Tiers – and each Tier had a particular level of expectancy.

Family Members were on the Top Tier. I literally expected them to STOP EVERYTHING to care for me AND Gage. I believed that my parents and sister should call me daily as well as for Gage’s family to do the same (to support him and to see how I was recovering). I expected intense levels of help from all family members. I expected their world to reflect my disability. I expected generous amounts of care, sacrifice and assistance. I expected Gage and I to be the center of their universe.

Close Friends were the Middle Tier. These people in my life were given many of the same duties as Tier One; however, I relinquished them of daily support. I anticipated phone calls, cards, food and concessions – our social life ultimately revolved around my disability.

Other Friends, Close Co-Workers, Neighbors, Church-Friends, etc. were the Last Tier. I counted on these people for support in the environments where I saw them most – work, church and my community. They were supposed to take care of me when I was not at home and when Gage was away.

In a perfect world, ALL of those who love me would do everything that they could to care for not just me, but Gage, too. And, most everyone DID! But, my expectations were inappropriate and I realize that now. However, they stuck with me through the first several months of my surgical recovery and every time a family member forgot to call me or Gage, I cried. Every time someone offered to stop by the house and cancelled, I was devastated. Every time a social event could not accommodate my physical needs, I was offended. Every time the phone did not ring when Gage or I needed comfort or encouragement, I felt insulted. Here we were, a newly-married couple living the life that most people who have been married fifty years do not have to endure, and I expected everyone in our life to stop and help us.

I can only assume that while I was offended, my extreme expectations offended others, too. For that, I am whole-heartedly sorry. I should have been grateful for every single kind word or gesture Gage or I received. I should have been surprised and appreciative for ANY good deed aimed at me and my husband. Please do not misunderstand, I did appreciate EVERY act of kindness we received; where I faulted was that I expected them all…

Unlike what was promised to me, I did not recover after eight weeks. As you know, I was part of the 5% of patients where my spinal fusion surgery made my condition worse. Every day beyond the two months, I was angry. I demanded the recovery that was sworn to me. And, I believe that I often took out my anger and pain on those closest to me…

What I learned months later, and continue to learn every day of my disability, is that any act of compassion is a gift. It is not my family’s or friend’s fault that I am disabled or in chronic pain. It is also not their “job” to care for me and make my life better. When they bring me food, I am grateful. When my cousin gives up his seat so I can sit down, I am honored. When my parents schedule a holiday around my pain-restrictions, I am humbled. When my friend makes a 45 minute drive to my house so that I do not have to sit in a car for an amount of time that could trigger pain, I am thankful.

Yes, there are MANY things that family members and friends of a chronic pain or disabled person would appreciate. I will get to those in my next blog. Today, I wanted to remind myself, and anyone else living with chronic pain, that expectations can hurt just as much as a failed surgery.

Stepping back, I can see that my support system was amazing those first days and weeks post-surgery. I wish I could actually remember more of it. I was taking so much medication, many of the memories I have from those days were given to me from my husband. I have vases to prove I got flowers. I saved all of the cards that I have received for those days when I find myself still feeling alone; those cards remind me that I have many people who are praying for me. I have Tupperware toppling out of my cabinets from all of the food brought to us. But, I asked Gage not to take any pictures. Why would I want evidence of one of the worst experiences of my life? Why would I want visuals of the most painful event in my life? When I do have a flashback, I try to calm myself with the good and wonderful things that my family and friends did to help Gage and I through those dreadful days.

The greatest things that I recall my Support Network doing immediately after surgery were:

- Food and Flowers: Immediately after I had surgery, Gage wore his Nurse Hat more than any other. He did not have time to cook me a meal, let alone himself. My parents and Gage’s parents brought us food more times than I could count! And, my family and friends filled my hospital room with flowers – my favorite Cheer-Me-Up gift!

- Pillow Talk: I still cannot get enough pillows! Immediately post-surgery and now – COMFORT IS KEY! I had people help me get comfortable around the clock. I even had a cousin make me a special pillow cover which I still use regularly to this day! And, my loved ones understood that when the pain was SO unbearable, I needed alone-time. If you have never had major surgery before, it is not only painful, but it is EXHAUSTING! One minute, I was up and chatting with a room full of amazing visitors, the next, I was screaming and begging for the room to empty so I could die to my pain by myself.

- My mother-in-law brought me pajamas to the hospital. That was one of my favorite gestures. It was practical. It was sweet. It was soft. It was the perfect gift for the moment!

- Also, my mom and dad took care of my dog so that Gage could stay with me at the hospital around the clock. I know that to those of you who are not dog-lovers, this may not mean anything to you, but our dog is our baby. Taking that burden off of Gage’s plate – on top of him taking care of me – was a wonderful gift!

- I was in the hospital for about 6 days. I needed medical care. Gage needed physical and emotional support while he supported me at the same time. My parents and sister were with us around the clock and other family members and friends rotated in and out of the hospital door more than I could count. Those were an excruciating six days and I will never forget the importance that our support system played during those days.

Prior to writing this blog, I admitted to my friend, Steven, who asked HOW our friends can help me (and Gage) that this particular blog would be difficult for me to write. I am ashamed at my selfishness. I am also saddened by the memories of the struggles that Gage and I endured that first year post-surgery. However, I pray that this blog serves its cleansing purpose. Yes, Gage and I are still in need of support. Yes, I am still in constant pain and I can offer many suggestions to friends and family members who WANT to support their loved one in chronic pain. Today, though, I thought it important to remind myself – and anyone who wants to reflect on their own journey in life – that expectations can either shape or break a relationship. I am thankful that my eyes were finally opened to the fact that I AM GRATEFUL for any love and kindness bestowed upon myself and my husband.

Stay tuned to learn HOW Friends and Family can help a loved one who is in chronic pain in Part Three of this multi-part series!

I am The Voice of Chronic Pain - Part One: Spouses

I said to Gage when I started my blog, “If this blog helps even one person understand chronic pain, then I will feel complete.”

I have not helped one person. The wonderfully amazing fact is that since I started this blog, I have been contacted by COUNTLESS people, some telling me their personal testimonies and battles with pain, some asking for help, some wanting more information as to how to help a loved one with pain, some seeking medical advice and so much more. Through this blog, I am honored to say that I have helped many!

I started this blog because my Pain Counselor said that it would be therapeutic. When the President of my PT Facility “happened” to read it, she encouraged me to keep writing. She told me that “People with chronic pain need a voice. You should be that voice.”

Here I am, a disabled, thirty-one year-old newlywed (kind-of) who has a story. But, I have learned that I am not the only one with a tale to tell. Recently, a close friend came to me asking for help. She, too, was diagnosed with a chronic pain condition. She, too, is young. She, too, is married and a hard-worker and highly involved in a multitude of extra-curricular activities. At the beginning of this New Year, she emailed me AND her husband, begging for help. She did not want to live another year with the type of pain she had the year before, but she did not know where to begin. She did not know how to get help. She did not understand her choices. She did not realize how having a chronic condition would affect not only her life, but the lives of those around her. And, most importantly, she did not know how to involve her husband.

What many people do not realize is that when one person in a family has a chronic condition, the family has a chronic condition. I have written before that our Pastor said to Gage and me, “Gage, if Stephanie is disabled, then you are disabled. You are one.”

I have learned that it is not just my husband’s job to know about my pain – his role in my life is much greater than that! He is my Partner. He is my Team-Mate. He is my Other-Half. If half of me is broken, then all of US is broken.

Since July of 2009 (when I attained my back injury that never disappeared), Gage and I have been forced to recognize that he may be my husband, but he will also wear many hats. He will be my husband, my protector, my provider, my best friend, my nurse, my advocate, my errand-runner, my chef, my maid, my dog-walker, the person I turn to first with upsetting news, the person I turn to first when I make improvements, the person who encourages me when I do not want to do my PT, the person who dries my tears when I am sobbing in bed because I do not to wake up to another day of pain, the person who speaks on my behalf when I do not have a voice. When a wife (a spouse) has a chronic pain condition, the man is no longer just a husband (which is a large role to play in anyone’s life).

I have been asked time and again: What does Being One look like to a spouse?

Granted, I recognize that every marriage is different and may be built on belief systems different than those of Gage and me, but this is what it looks like in our marriage and what I would recommend for any married couple dealing with a spouse who has a chronic condition:

- When you are in chronic pain, you need support - physical and emotional. You can't get that by yourself. You need to involve your family and friends. You need to learn to advocate for yourself and, when you cannot, your spouse needs to learn to advocate for you.

- What is an advocate? In this case an advocate is someone who has your best interests in mind and is ready to fight for them – whether you are capable or not. I use the word Advocate a lot when I plan my medical appointments. A very wise woman (also a chronic pain patient) said to me, “Stephanie, NEVER go to an appointment alone. You will be emotional. You might not be able to hear what the doctors are telling you. Your emotions may take over and you may forget the questions that you prepared or the concerns that you have. Take someone with you who will advocate for you – someone who will not only wipe your tears when you hear bad news, but someone who will do that with one hand and write down notes with the other.” Since that wonderful woman shared her wisdom with me, I have not attended a single Specialist or Doctor appointment alone.

- Your advocate can help you outside of the doctor’s office, too. Gage knows my tell-take signs of pain. He keeps track of time when I don't. If I've been out-and-about for more than three hours, he checks in with me to see if I need to leave or if I can stay longer. Last Tuesday, he even lectured me for both cleaning the house and working on the budget for hours in the same day. Before Christmas Gage attended my PT appointments with me so that he could learn from Lori, my exercise PT, how to "spot" me at the gym; then he learned some myofascial release techniques from Nancy, my pain-management PT, so he could treat my muscle pain at home. We even used some of our Christmas money to buy a folding massage table so that Gage can help me with my trigger-knots at home without hurting HIS body. Your advocate is your PARTNER. When I feel better, Gage feels better. When I hurt, Gage hurts. Whatever your advocate can do to protect you, he/she must do it! Being an advocate is the greatest honor one can achieve – it is the honor of being the hero to the person you love most in life.


- One of the greatest things that Gage does is he has learned to not take my emotions personally. When my pain levels increase, so does my bad mood. This is a known given. Recently, after an incredibly painful day, where I admit, I was a bit of a witch, I apologized to Gage for being so awful. He smiled, wiped my tear and said, “No apology needed. I know it wasn’t you being cranky, it was your pain.” This is patience. This is mercy. This is God’s grace here on earth! As a spouse, you have the ultimate gift of grace that you can give to your beloved. Don’t keep that gift all to yourself!

- A husband should always validate his wife’s pain and avoid denying it. Saying “You’ll feel better soon” makes me want to scream! Saying, “It must be awful to hurt this much,” makes me want to melt in his arms. A colleague once said to me, “You never know how difficult it is to live with chronic pain until you have to live with it.” Boy was she right! Unless you live with pain, you cannot understand. You also, therefore, do not have the right to judge or criticize it. If you have ever had a migraine, broken a bone or threw out your back, try to remember that pain, multiply it by 100 then take away its expiration date. That is kind of what chronic pain feels like… Husbands, it is not your pain. Yes, you are put in the position of caring for the pain, but you do not have the right to define, quantify or measure it. You must trust your wife that when she tells you she is in pain, SHE IS. She does not want this burden – why would she lie about it? Trust her and support her. Chronic Pain is one of the most misunderstood diagnoses to bear – the greatest act of love is to help your spouse and share that burden in any way possible.


There are countless other things that a spouse can do to help the person with chronic pain. Some simple ideas are:
- Offer to help run errands or do the things around the house that are known pain-triggers to the one suffering.
- Ask – and ask often – How are you?
- Hug her (him) when she cries and feels controlled by the pain; don’t just say things to make her feel better, show her…
- Understand limitations – When I have to say “no” to an invitation because I am in pain, I already am upset. I already feel trapped. I already feel (unnecessarily) guilty for my restrictions. Giving me a guilt-trip on top of my own will not help either one of us, or change the fact that I am physically unable to go somewhere.
- Most important, celebrate my successes! If I went an extra hour without needing medication, CELEBRATE that with me! If I enjoyed dinner and a movie instead of just a quick drive through meal, CELEBRATE that with me! If I share with you that I was able to clean the entire house by myself without causing myself more pain, CELEBRATE that with me! If we are able to have a fun date night that is not cut short by the chronic pain curfew, CELEBRATE that with me! Find reasons to celebrate with each other – seeing the good as often as possible will soon start to outweigh those moments of excruciating pain – even if those moments never stop.

To the person with chronic pain reading this, I have learned that my husband needs encouragement, too! NEVER forget to say thank-you. ALWAYS acknowledge the sacrifices he makes on your behalf. TRY not to let your relationship revolve just around you; even though your Pain is a main determining factor in your life, there are other factors to keep in mind, too. When you are strong enough, say “YES!” When you are not strong enough to attend an event, but also not in debilitating pain, tell him to go places without you. When he has to stay home and care for you, acknowledge his huge sacrifice. Tell him how much you appreciate his help. Find ways to treat him, to honor him, to love him and to make him feel special.

Lastly, The New York Times published an article titled, “Disabled Spouses Are Increasingly Forced to Go It Alone” that cited that couples who are married where one partner has a disability are more likely to divorce (Kilborn, P., 1999). What ever happened to the “Through sickness and in health” vow taken on that serendipitous wedding day all those years ago? To remain a Team, to continue Being One, BOTH parties need support. Gage and I meet with our Pastor on a regular basis to discuss how to better strengthen our marriage that is under such stress, how to ensure that – even through the tough times – we continue to BOTH put one another’s needs first and how to carry each other’s burdens. My Pain Counselor has suggested that spouses need as much emotional support as the chronic pain patient. That support can also be found through: counseling, support groups, a good friend/confidant, online chat groups, your church, your family, your community. Whatever avenue is chosen, it is essential that both spouses recognize the need for help carrying these burdens that have been handed to them.

There are many ways that a person with Chronic Pain can be loved and helped by family and friends. Stay tuned for what friends and family can do in this multi-part blog series!

Stephanie and the Terrible, Horrible, No Good, Very Bad Day

Have you ever had one of those days? Of course you have. Who hasn’t? There is no reason why my day would be any worse than your bad day, but I’m going to cry about it anyways because today I had a terrible, horrible, no good, very bad day!


I wish I would have woken up to the soothing sound of a waterfall on my sound-therapy alarm clock, but instead I sat up in fright after dreaming about demons all night. To trick my mind from recalling the nightmares, I jumped straight onto the computer. Today was budget-day. The bad day started small with a miscalculation of the Visa bill. But the small, irritating battles wouldn’t stop: then came the inability to delete a recipient from my Bill Pay Account, an error on the Charter bill, not being able to receive the gas bill, an incorrect balance on the car insurance and an error on my end of a transfer – all in one hour!

Bills were finally finished and I moved onto the next productive item on my list: scheduling appointments. As I was on the phone with the vet, the phone died. Instead of Charter disconnecting just our cable, the maintenance man was informed to turn off ALL of our equipment. There goes the phone and internet, too!

I attempted to text my husband to see if he could call Charter on his lunch break to fix the problem. Having a limited number of minutes on my cell phone, and knowing through MUCH experience, the average length of a phone call with Charter is at least 30-60 minutes long, I needed his help. Of course, he did not get my text messages. Of course, the cell-service in his building was restricting his texts. Of course, I couldn’t get his help and I had to use the last of my minutes on a phone call with the cable company that is my all-time nemesis.

After the fourth scuffle of the month with Charter, my phone and internet were finally restored. Lady’s vet appointment was made and so was my dentist appointment. As I finalized my Google calendar, I receive an email from some stranger at Guardian (my disability provider), telling me that “after several attempts, she still has not received my waiver for premium life insurance.” I sent that waiver LAST MAY from my school’s fax machine. There began the string of back-and-forth “are you sure you didn’t get it” and “you just need to fill out this form again” I found the evidence. I found the original ALREADY competed document and original fax. Once this was scanned to the stranger, she forgot to apologize for the inconvenience or the fact that I spent hours rifling through my accordion folder of paperwork and documents to find the stupid form – she actually did not respond to my email at all.

Then followed my mountain of appointments. This month has been insane! I have had appointment after appointment since 2012 began! Ironically, though, my PT Facility has been unable to schedule my reevaluation. Without the reevaluation, the Team is unable to determine my progress. If the Team is unable to measure my progress, there is nothing to base new goals upon. If there is nothing to base new goals upon WHAT IS THE POINT OF GOING TO THESE APPOINTMENTS AT ALL???

Granted, I understand that everyone makes mistakes. I listened to a Focus on the Family podcast a few months ago where the hosts were interviewing a husband and wife author-team who wrote a book about how to have a successful Christian marriage. When the host said to the wife, “It must be easy to live with your husband and practice these ideas, considering your husband is a pastor,” to which the wife responded, “He may be a pastor, but he is a human first.”

My PT facility may be the best PT facility I have EVER been to; nonetheless, it is a facility built by humans and operated by humans. I expect perfection from them and I am disappointed when they are not perfect. (Lucky for them, I feel the same way about myself.) Why am I bringing up my PT facility? Because even THEY made my day worse than it already was!

I have been trying since NOVEMBER of 2011 to schedule my reevaluation with them. Each week, I am told by the Office Manager, “I’m working on it,” and “Check back with me in a few days.” Today, I was tired of waiting. I was not just in a bad mood – which I admit that I was – but I had already been hounded by Guardian once today and I did not need to be attacked by them at the end of the month because they did not receive the results of the PT reevaluation that was promised to occur in January. When I arrived for my appointments today, I was told that the “only appointment available is for 7AM on February 2nd.” Really? It took TWO MONTHS to get the world’s worst appointment? Really? My doctor who created a goal for me to get at least 8-10 hours of sleep each night and knows that I set an alarm to wake up at 8:30am each morning is telling me that the only time she will see me is at 7:00 IN THE MORNING TWO WEEKS FROM NOW?

Unfortunately, the Office Manager got my wrath. Unfortunately, my Case Manager got what was left of it. Then, she had the nerve to try to convince me that I needed to start eating meat even though I have been a vegetarian since 2002 and have gained the 5lbs she required for me to gain. Following the No-Meat discussion, she informed me that there may need to be a Team Meeting without me, because there are “things going on at the office that are keeping everyone from being able to get together.” Not my fault nor my business – all I want is the next set of goals so I can have something to work towards other than adding another song to my Dance Central routine or two minutes to my cardio count at the gym.

By the time I saw my Biofeedback Specialist, I was already in tears and there was not a lot that he could do to get average Baseline Data on a Non-Stressed-Steph, because after the day I had, I could not deny the stress piled on my plate, so I had to make yet ANOTHER appointment to see him in a week.

Many people think that just because I am on Disability, I sit at home, paint my nails, take long baths and get massages for the pain. WRONG. It is 6:15pm and I am just sitting down for the day. I haven’t yet put away the laundry, fed the dog or started dinner. My husband is stuck at a PTA meeting and so he is not around to help and my back is hurting from the activity and anxiety of the last 10 hours. My day consisted of a list of to-dos longer than most people’s grocery lists and I had two two-hour doctor appointments to attend on top of it! I thought that when I took the year off of Special Education, the usual amount of paperwork that I completed each week on emails, data collection and Individualized Education Plans would be a thought of the past, but now thanks to Social Security Applications, Guardian Waiver forms, Physicians Statements, Pain Logs, Medical Updates and MORE, I wish I had an IEP to write!

Most of my blogs are about my medical and emotional journey throughout my disability. Most of my blogs have a happy ending – or at least a hopeful ending to tie my misery with a little smile. Today, I had a bad day. Just like you. Just like any person with or without a disability. Today, I guess you could consider me “normal” because I was not given a break just because my back is literally broken. Today, I am not looking for a silver lining or a happy quote to help transition into a peaceful evening at home… Today, I am admitting that I had a TERRIBLE, HORRIBLE, NO GOOD, VERY BAD DAY.

Baby Fever

Can a woman who had spinal fusion surgery from L/4-L/5 to the sacrum – that FAILED – and is now diagnosed with Failed Back Syndrome and is on Disability – have a child?

When Gage and I got married on May 28, 2010, our timeline included:
- Honeymoon June 3th – 14th, 2010
- Spinal Fusion Surgery June 24, 2010
- 8 week Recovery
- Return to work on August 8, 2010
- Get Pregnant during the summer of 2011.

Perfect, right? Wrong. I never recovered from my surgery. I never returned to work full-time throughout the entire 2010-2011 school year. My body was not ready to get pregnant in June of 2011. Our timeline shifted… again.

Last June 2011, Dr. Julie knew about my dreams of being a mother; however, she wanted me to research my options. Dr. Julie’s main concern was because my body is fused to the sacrum, I may not be able to physically expand in the pelvic region and carry a baby. She feared that if I were to get pregnant, I may have a higher chance for a miscarriage once the baby grew to a point beyond what my body could stretch. Dr. Julie was aware that I had an upcoming appointment with my Obstetrician, Dr. Ann, and she coached me with questions to ask that would better determine if it was physically possible to get pregnant and be a mother. Dr. Julie wanted me to be prepared for the news that I would very likely not be able to have children.

When I left Dr. Julie’s office, I felt defeated. By that point, I had already received Disability and was considered a disabled person. Gage and I knew that having a baby was not something we were going to pursue immediately; nonetheless, we wanted to know our options. When Dr. Julie warned us that pregnancy may not be in the cards, I was devastated. I wanted to be a mother of FOUR! I wanted to have a natural birth! I wanted to be a stay-at-home mother while my kids crawled through the first years of their lives. I wanted to give a family to my husband. Were these dreams possible?

Gage attended my appointment with Dr. Ann. We had our list of questions and information to pass onto her regarding my surgery and restrictions. As we waited in Dr. Ann’s office we were terrified! The fate of our family rested in the words that Dr. Ann was about to speak.

After reviewing all of the information regarding the specifics of my fusion, the medications I was currently taking and the amount of pain I endured daily, Dr. Ann gave us her recommendations. The great news was that Dr. Ann determined that I very likely would not have a High-Risk Pregnancy, even with the fusion. She explained that oftentimes, women who have fusions are unable to receive an epidural and that there may be a higher chance of having a Cesarean Section. She reviewed my list of medications and warned that while ideally I would not take any medications during pregnancy; her main concerns were with the Narcotics (for pain) and Gabapentin (which I was taking due to numbness down my legs and arms). Apparently, the low-dosage of Valium that I took to control muscle spasm, the Mobic, which is an anti-inflammatory drug and the Ultratram, which is a non-narcotic pain reliever, were not harmful to a fetus. Regarding the position of my pelvis, Dr. Ann told me that a woman’s body naturally stretches, moves and basically does whatever it has to in order to make sure that a baby will survive during pregnancy. Even with my fused sacrum, my body will find a way to carry a child. Lastly, she explained that due to my small size and fusion, there was a high probability that I would require bed rest during a majority of my pregnancy, as the larger my belly grew, the more pain I would endure. Dr. Ann assured us that she would take care of me during the pregnancy; she even said that I could get pregnant that day and have a healthy pregnancy and baby!

Gage and I were very thankful for the news that I could get pregnant. The additional information was scary, especially to my protective husband who makes it his responsibility to keep me out of as much pain as possible. However, after a deep discussion and weeks of prayer, I told Gage that if our goal is to have a family, I was not only willing, but I wanted to take on the risks of bed-rest, less medication and the increase in pain. After all, I was accustomed to daily pain. If that pain would one day lead to a child, I would suffer for the outcome. I would happily suffer for our baby, for our family.

On the other hand, Gage and I agreed that we would push back our Timeline. We knew that at the end of the summer of 2011 I was going to start my PT Bootcamp, which was promising to rehabilitate my body, make me stronger, decrease my pain and prepare me to return to work and start a family. I also made it my mission to stop taking the “harmful” pills so that I could be as drug-free as possible. Gage and I decided to set more realistic goals. We would start a family when:
- My pain drastically decreased.
- I was on little to no medication.
- My body was noticeably stronger.
- I gained some of the weight that I lost from the surgery.
- I could take care of myself without Gage’s help.
- I could lift/carry a child without pain.
- Our relationship was in a healthy place that would allow for us to start a family without Gage constantly worrying about my pain AND when I could care for a child without needing Gage to care for me at the same time.

Then the unthinkable happened in July of 2011, just one month after that trip to Dr. Ann. We thought we were pregnant. My period always came like clockwork and suddenly, I was late. Not only that, but I was experiencing early pregnancy symptoms: unexplainable nausea, heightened emotions, food-cravings and I was exhausted all of the time.

Gage and I were terrified and uncontrollably exhilarated all at once. This was NOT part of the plan. We basically held our breath for weeks. We wanted this baby more than anything, but we also knew that my body had a ways to go before I could feel confident carrying a child and then caring for a baby.

We finally submitted to the idea that we were pregnant; that being pregnant was going to be difficult. Painful. Stressful. We could be judged. We could lose my disability approval. We would both have to give a lot to get through it… It was going to be exciting. Magnificent. Fascinating. The best thing to happen to our marriage.

My 31st birthday was approaching and we did not want to tell anyone our secret. We also were not ready to take the actual pregnancy test. The fear of the risks related to the pregnancy was nothing compared to the happiness that the idea of growing our family brought us. We did not want to know the truth. We, even me, the perfectionist, the planner, the organization-freak, wanted to NOT know for sure…

Just before my Birthday Party, I met my sister, Bonnie, for dinner. I could not keep this secret from her. When I told my very protective younger sibling, she smiled and hugged me. She did not judge me. She did not berate me about the difficulties a pregnancy could bring to my recovery. She told me that she was happy for me.

My sister’s response was just what I needed to finally know the truth. The eve before my Birthday Bash, Gage came home with a pregnancy test.

It was negative.

Gage Googled – he did not believe it. He even learned that a test could show a false-negative, just not a false-positive. We wanted to believe that the test was wrong. We were also partially relieved, thinking that the test was correct. So, we waited.


The next day we received the official answer. Mother Nature brought me my monthly gift and our baby-bubble was shattered. We cried. We laughed. We determined that it was for the best and we said we would move on with life. But, we did not give up on the idea that one day, I will get pregnant. One day, we will have a house filled with children and the battle-wounds to prove it. Just not that summer…

A few months ago, after my wonderful Performance Review of November 2011, after I successfully weaned off of all Narcotics and Gabapentin, after my endurance improved and my pain decreased, we were asked to babysit our friends’, Steven and Megan, adorable baby, Judah. For the first time since at least a year before the surgery, I could take care of an eight-month baby! I could easily and freely hold him, I could bend forward and scoop him into my arms, I could crawl next to him on the floor, I could lay down on the carpet and I could feed him and change his diaper. I could do it!

I was so excited, I told my PT, Nancy, about the experience. She, too, was elated! This real-life practice was just the news she needed to feel more comfortable with the idea of me one day getting pregnant. Nancy was not worried as much about the pregnancy as she was of the baby. Could I take care of a child alone without hurting myself? That October 2011 night, I proved that I could. Yes, I was a little sore the next day from all of the bending, carrying and playing… But it was worth it.

Since then, Gage and I have started taking a more pro-active approach to pregnancy. Yesterday, we went together to see Dr. Wayne, my pain management doctor. Months ago, during an office visit, I mentioned to him that Gage and I wanted to get pregnant possibly that year. Dr. Wayne, like many of my other Specialists, was leery of the idea of me having a baby. He was mostly concerned with whether the medication would affect the fetus; he wanted to make sure I would gain weight before I got pregnant and he wanted to find ways to help my small body carry such a large frontal load during the final months of pregnancy. However, at yesterday’s appointment, Dr. Wayne was very positive about the experience! He congratulated me for independently stopping the Narcotics and Gabapentin and for gaining the recommended six pounds. He happily reviewed my PT information and noted that I have made great strides in my recovery. Then, he started making suggestions about baby-corsets (or baby belts) that I could purchase that would help me shift the weight of the fetus off of my spine and center it with my body during pregnancy. Another doctor was on the baby board with Gage and me!

While this news is wonderful, Gage and I continue to be realistic. We still have our goals. We still know that right now, we are limited. We understand that a few nights of babysitting is nothing compared to the trials of raising a child. We are not fooling ourselves into believing that I will not have painful days, that I will “glow” all of the time during my pregnancy and that having a baby will be just as “easy” for us as it is for all of our non-disabled friends. (I say “easy” with sarcasm, my parental friends). However, what we do have is hope.

Gage prays over my body, my future pregnancies, our future children, our future abilities as parents and our marriage EVERY DAY. Whether that pregnancy happens next summer or we end up adopting a child in five years, Gage has given our family hope that we WILL be parents. And, we will be good ones at that!

In June of 2011, I was told by one doctor that I may never be able to carry a child. The following July, we thought I was pregnant. Early that August, we put pregnancy on hold. On August 30, 2011, my PT Team started a Treatment Program that would help make me strong enough to not only get pregnant, but to care for my baby. Yesterday (January 11, 2012), another doctor confirmed that pregnancy is in my future, if I want it to be. Every day, I pray with my husband over our marriage, our household, our family and our future. One day, our house will be filled with a family. I believe that God places desires on our heart that He wants to fulfill. One day, we will announce to all of you that we are pregnant. Until then, please pray with us…

The Best of 2011

2011 could be described as a very, very bad year. I cannot deny that there was loss and disappointment. I cannot pray enough to bring my beautiful sister-in-law, Shannon Dodson, or my dearest family friend, Grace Giebe, back to this earth. I cannot hope enough to change Surgeon Number One or Surgeon Number Twos’ minds that my pain will never disappear and that there are no guaranteed options to ever “fix” my spinal disability. Gage cannot buy enough lottery tickets to deny the fact that our family income has drastically reduced due to my inability to work. Not a single person in the Human Resources Department at Special School District can promise me that I will have my job back in this coming August; in fact, my physical therapists and multiple specialists cannot ensure that despite ALL of my rehabilitation and dedication, I will be physically capable to return to work full-time… EVER. Even though our plan was to start a family, we were advised to put that plan on hold to decrease the dangers of an at-risk pregnancy. In fact, hardly anything that Gage and I planned for this year happened, as usual…

2011 could be described as a very, very bad year… However, when you make a promise to someone, take a vow, swear that you will stick together through better and through worse, you do…. There may have been many “worse” occurrences this year; however, Gage reminded me that we also had many “betters.” Even more so, he promised there are countless more to come - if we choose to look for them.

Great or small, Gage and I agreed to create a list of “Our Top Decisions of 2011.” My positive-thinking husband reminded me that despite our low-points, God has given us a choice. We can choose to only focus on the worst of 2011, or we can DECIDE to look for the best.

Our Top Decisions of 2011 (in no particular order except for their many paths down our memory lane):


- Gage got an amazing new job at MRH.

- Instead of sitting around the house during my recovery/rehabilitation focusing on everything that we can no longer do together, we started several projects, like making candles, scrap-booking, writing-projects, video clips and (the beginning of) learning to sew.
- I took over the budget, giving Gage more time for himself and me more responsibility and ways to contribute to our household.
- We discovered bath salts; not only do they make our baths better, they calm our muscles, too!
- We both participated in a Daily Bible Program to dive deeper into the Word.
- We canceled cable and said “no!” to smart phones.
- I started PT Bootcamp (minus the dangers and stresses of my teaching job).

- We learned how to make amazing foods and preserve them, including an award-winning vegetarian chili, Steph’s Secret Marinara Sauce, Gage’s Holy Ghost Pepper Sauce, Sweet-Potato Burritos, Organic Applesauce and pickling anything that can fit in a jar.

- I began Acupuncture treatments and Gage learned the ancient art of “cupping.”

- We purchased the world’s greatest Aborigine Broyhill sectional.

- We gave into the fad of Shag Carpet.

- We took Dr. Mark’s advice and enjoy weekly Date Nights.

- We scheduled regular meetings with our Pastor to learn to: fight fair, set boundaries, put one another first, love each other unconditionally and learn how to be a TEAM even when one of us has a physical disability.

- Enjoying the Guilty-Pleasure called Dexter.

- Paying-off a majority of our Student Loans.

- Starting the Membership Process at our Church.
- Developing relationships with our neighbors and deepening relationships with good friends.
- Participating in Bi-Weekly Boy’s Bible Study & The Girl’s Prayer Group.
- Praying over our marriage, our future children, our family & our friends daily.




To whoever reads this blog, you may look at our list and see our decisions as petty or insignificant. To you, that may be true. To Gage and I, they were the decisions that helped make 2011 better despite the worst; they were the choices that are allowing us to have hope for 2012.

Happy New Year!
Love Gage & Stephanie

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!