Misery... Loves Company

I met Jamie when I was 14 years old. She has known me for OVER HALF of my life. She helped me get my first fake ID when I was seventeen. She and I got matching tattoos after we graduated high school. She visited so often while I was at Mizzou that she was an honorary roommate in my college house. She was with me the night I got Saved and helped me dedicate my life to God. I moved in with her once I graduated from Mizzou and decided to start working towards my Teaching Certificate. She led me to the first church in which I became a member. We shared clothes, make-up, secrets, even ex-boyfriends. Jamie is the type of friend who you forget that she knows you as well as she does; she is the type of friend who knows parts of you better than you know yourself…

Jamie and I had an hour and a half phone-date last week. We only live about thirty minutes away from each other, but with her two babies and my disability (and the million other demands in our lives) we talk to one another on the phone more than we see each other. However, Jamie is the type of friend with whom you can go months without speaking and pick right up as if you spoke yesterday.

Those are the best kinds of friends…

Jamie likes to “get real” with me. While we chatted last week, I told Jamie that I had decided to write a book about people who suffer from various conditions, such as chronic pain, chronic conditions and other “invisible disabilities,” as I discussed in my last blog. Jamie is one of my greatest cheerleaders. She said, “Stephanie, you were meant to be a writer! You have been writing since before high school!” she reminded me and I laughed at her memory.

I told Jamie that even though I was excited that I was finally living one of my dreams – to be an author – I was sad. The only reason I am able to write a book NOW is because I am not able to work and I am on Disability. Ever since I decided to become a teacher, when I was twenty-one years old, I told myself that during my summers OFF, I would write my books. I taught for five years and never once wrote those books…

Jamie, being bold as she always is said, “Steph, this reminds me of the Stephen King novel, Misery. The main character literally tied the author to his bed and broke both of his feet so that he would write his book.” I waited for Jamie to explain to me her point… “Steph!” she called my attention, “Maybe God is doing this for you!” she said with excitement. “What if God has taken everything else, ALL of your distractions, even your health, away from you so that He could use you to finally write that book?”

Jamie left me speechless. Was she right? For years, I have asked God, “WHY?” Why did I hurt all of the time? Why did God lead me to be a teacher only to give me a body that can’t teach? Why, God? Why?

As ridiculous as I thought that Jamie’s analogy was at first, I started to re-think it…
I may not be happy that I am disabled and that I cannot teach, but the idea of being a writer very much thrills me!

I have been going through my physical pain trying to keep a smile on my face and showing others the silver lining in my life, but there are days when I am miserable inside.

Is my current misery God’s way of making my dreams come true?

Maybe one day, I’ll find out…

Name YOUR Invisible Disease!

As I have written this blog, and lived my life sharing my disability with others, for the past two years, I cannot tell you the number of times that YOU, those who read this blog, contact me…

You encourage me along my own journey…

You ask me questions specifically about my condition…

You ask me how you can help me and how to help others who you know who also suffer from what we call INVISIBLE DISEASES…

You tell me your stories... YOUR STORIES ENCOURAGE ME!

What I have learned, is that there are more of you who have an Invisible Disease than there are those of you who do not.

Recently, I began research on YOU and on YOUR STORIES. I started by sending a few friends who I knew had a story to tell an email and I asked them some basic questions. As I began receiving an influx of responses, I realized that I have an entire GROUP of people for whom these questions could be asked. Please read & respond to the following questions:

1. What is the name of your condition?

2. What age were you first diagnosed?

3. How does your diagnosis affect your daily life?

4. Can you describe the pain or most difficult part of living with this condition? (What hurts the most? What does that hurt feel like? etc.)

5. If this project becomes published, can I use your first name? If not, can I use your information with a fictional name?

To be fair, I will answer these questions, too. If you would like more details, feel free to scroll down the right side of my blog and learn more about my journey with chronic pain.

1. What is the name of your condition?
I was first diagnosed with Scoliosis. Years later, I was diagnosed with Chronic Pain Syndrome – due to Scoliosis. After an MRI, I received the diagnosis of Degenerative Disc Disease. The following year, I had a spinal fusion surgery (which made my condition worse) so I received the diagnosis of Failed Back Syndrome – Post Spinal Fusion Surgery. After almost two years of intense pain, I was re-diagnosed with Chronic Pain Syndrome. I am currently in the process of receiving a legal Disability Diagnosis because I am “unable to complete activities of daily living.”

2. What age were you first diagnosed?
Scoliosis = 13 years old
Chronic Pain Syndrome (1st Time) = 19 years old
Degenerative Disc Disease = 28 years old
Failed Back Surgery – Post Spinal Fusion Surgery = 29 years old
Chronic Pain Syndrome (2nd Time) = 30 years old
Disabled = 31 years old

3. How does your diagnosis affect your daily life?
My condition is considered severe. As stated above, the “unable to complete activities of general living” part is entirely true. The most difficult part of my diagnosis that I deal with daily is that I am unable to work. But, the little things that are affected daily are: I need accommodations to do EVERYTHING (sit, stand, walk, exercise, shop, sleep, bathe, do chores – you name it!). I am currently in the state where my disability affects every part of my day…

4. Can you describe the pain or most difficult part of living with this condition? (What hurts the most? What does that hurt feel like? etc.)
It is very difficult to pretend that I have a “normal” life with my condition. I have very specific requirements that I must follow; and if I do not, then I am guaranteed to have pain. My left QL (back) hurts the most; however, because one thing leads to another, I have daily pain in my entire low back; I constantly have a sprained Left Hip, my SI joints are regularly inflamed and hurt and I have slight, daily pain in my neck and right shoulder.

The best way that I describe my pain is this: Have you ever slammed your finger in a door? Do you remember that intense feeling that goes STRAIGHT to your finger? You see red. You also almost “see” the blood rushing to your finger. Then you feel the “Thump…. Thump…. Thump…” in your finger. It’s as if your heart moved from your chest and now lives in that poor, hurt finger. The word “throbbing” does not describe this feeling of pain! THAT is what my back feels like every day…

5. If this project becomes published, can I use your first name? If not, can I use your information with a fictional name?
My name is Stephanie and I have an (actually, many) Invisible Disease(s).

I'm trying to get an idea of what other conditions people I know deal with and how those conditions affect their lives. Please help me by participating in this questionnaire or passing it onto someone you know! You may hit “reply” on your email, email me at: steph2teach@gmail.com or leave your answers in a Comment on this blog. Don’t be afraid to share with me – or others – what your life is like living with an Invisible Disease.

Thanks so much for taking the time to share YOUR story!

Back-Breaking Miracles

Last Wednesday, I had my PT re-evaluation. The purpose of these re-evaluations is for my physical therapists (and I) to see how much progress I have made since the last evaluation. My last evaluation, held in November 2011, was AMAZING! I showed SO much growth and improvements in my physical recovery that my future looked very promising. This evaluation, however, was not so great…

Since I began participating in PT Bootcamp from September to present day (about 5 months), I have made incredible improvements. My pain levels have overall decreased, I am completely off of any narcotic or “harsh” medications, I require less sleep each night, my appetite is recovered and I have gained some of the weight that I had lost from the surgery and overall, I am able to attempt many activities of daily living that I could not do before starting PT Bootcamp. However, at this particular reevaluation, my body was not responding to the directions given by The Facility President, Dr. Julie, and before I knew it, I was crumbled on the floor, screaming in agony. Unfortunately, I ended up leaving The Facility in excruciating pain. I threw out my back… again. Dr. Julie was not sure which exercise was the culprit for my relapse; regardless, I spent the next four days bed-ridden and praying for God to take the pain away.

Even though those four days were spent in misery and distress, with the extensive amount of rest my body received, by Saturday, I was able to walk on my own and decrease my medication back to my regular dosage. By Monday, I re-visited The Facility and saw my regular PT, Nancy. I was able to exercise on the stationary bike and then spent the next 45 minutes filling Nancy in on the pain and working on my sore muscles. Nancy felt responsible for what happened at the re-evaluation. She wished that she would have been at The Facility that day to help monitor my activities and then work on my muscles once my back gave out. It wasn’t Nancy’s fault. It wasn’t Dr. Julie’s fault. It wasn’t my fault. As the saying goes, “it is what it is….”

Even through the pain, Dr. Julie was able to notice some improvements from the last evaluation; however, they were not as significant as she expected. Out of all of the exercises, I only scored Proficient in: kneeling and crawling. I could not: bend forward, walk, stand, reach, maintain balance, squat or sustain appropriate hand-eye-coordination. Dr. Julie determined that, at this point, not only am I unable to return to the Special Education Classroom, she also needs to determine a specific condition for which I will qualify as “disabled.” Even though I receive Disability Provision from my employer, Dr. Julie concluded that I require an official disability diagnosis because I am “unable to perform necessary activities of general living.” Additionally, I legally require the diagnosis so that I can qualify for healthcare and other benefits if I do, in fact, have to officially quite my job with Special School District due to my inability to work in the classroom.

I felt as if someone was stabbing me in the heart in addition to the torture aimed at my back. Was I always going to be “this way?”

That question is still unanswered. When I explained the results of the re-evaluation to Nancy on Monday, her eyes filled with tears. “Oh, Steph," she cried, "You’re so young! This just isn’t fair!”

Nancy is right. THIS IS NOT FAIR! But, this is life. Today, I went to Acupuncture with Maureen. I had to cancel my Acupuncture appointment last Friday due to my condition. When Maureen saw me this afternoon, she was very cautious; however, I convinced her that I felt much better than I had last week. Maureen said, “That is a miracle, Stephanie!” She explained, “For your body to go through such extreme anguish on Wednesday, then bounce back almost completely just a week later, is rather remarkable…”

It was a miracle! As much as I cursed God and begged for recovery earlier last week, I had not noticed that God was listening. I was so consumed by the throbbing torture in my back and the soreness that circulated through my body that when I finally started walking four days after the re-evaluation, I did not think of it as a miracle. When I rode the bike at The Facility on Monday, I did not consider that activity as part of God’s Plan. When I exercised for 30 minutes on Tuesday, I did not acknowledge the strength suddenly given to my formerly-incapacitated limbs as exceptional. When I was able to go to the gym this morning, I did not recognize the recovered body that God had provided to me this week. No, He did not heal my body from its disability… But, He did take away the pain from last week and perform His own miracle by restoring my back to its pre-re-evaluation-self. In the grand scheme of things, I’d rather have this body than the one which could not get out of bed any day!

I have heard that God performs miracles every day; I just never before realized that people often over-look them because they are too busy looking for something else instead.

What miracle happened to you this week?

Don't Worry, Be Happy!

"Don't wish me happiness - I don't expect to be happy, it's gotten beyond that somehow. Wish me courage and strength and a sense of humor - I will need them all." - Anne Morrow Lindbergh

Someone asked the other day, “Are you happy?”

Are Gage and I happy that we have a disability? No. Are we happy that I endure pain daily? No. Are we happy that our lifestyle has drastically changed due to the drop in our household income? No. Are we happy that we are not allowed the simplicity of life without chronic pain? No.

But… Are we happy people? YES! We have much to be thankful for and we give thanks daily for the love in our life, the friendships that brighten our hearts, the provision from Our Father, and the little things that make us laugh ALL throughout the day – even during days that are filled with pain or discomfort.

For years, Gage has said to me “Happy Day!” For years, I assumed that this phrase was Gage’s way of saying, “Have a good day!” I was wrong. Months ago, on a lazy Saturday morning, Gage said the familiar words to me, “Happy Day!” I smiled and scooted closer to him, resting my head upon his shoulder. The night before had been a battle for us: The Dodsons vs. The Disability. Thankfully, my pain usually reaches its peak just before bedtime and, thankfully, the morning usually brings to me a new, reduced-pain day.

“Happy Day!” Gage said again, sincerely and with a smile. “Happy Day,” I repeated. Gage looked at me with a suddenly serious expression. “Do you know why I say ‘Happy Day?” he asked. “No,” I told him, speaking honestly. “I say ‘Happy Day’ because every day that I wake up next to you is a day that makes me happy.” I never knew the meaning behind his made-up phrase, and his words melted my heart.

When Gage and I had been dating for six months, he asked me, “When do you think it is too soon to get engaged?” We knew that we were meant to spend the rest of our lives together, but we did not want to rush into anything. On the night of our six-month Anniversary (yes, we celebrated each and every month that we were together), after taking me to dinner, Gage took me to a jewelry store and we picked out a promise ring. Gage is a traditional man. My father gave my mother a promise ring when they were dating, and Gage wanted to honor the tradition of my family. He also wanted to ask my father for my hand in marriage before we got engaged. However, we were so in love that he could not wait to put a ring on my finger, so that night we picked out the first piece of jewelry that would symbolize our lifelong commitment to each other.

When Gage and I discussed my soon-to-be married name and initials, S.A.D. (Stephanie Anne Dodson), I grew scared, wondering if we discovered a sign that pointed to how our life would become. However, I quickly realized that the only sign that I saw was that I would be a fool to walk away from the love of my life because my initials spelled something… sad. Without a doubt, I knew that Gage was my future husband. Without a doubt, I knew that Gage was the man who would stand by my side, through good times and bad; the man who would raise my future children and who would help make my life better. Without a doubt, I knew that I would do anything for Gage and that being with him was a gift from God.

When the promise ring came in, Gage surprised me by having it engraved. On the inside of the ring, he wrote, “Be SAD.” We found humor in the irony of my initials, for we both knew that there would be nothing SAD about our life together.

When someone dear to us asked, “Are you happy?” Gage responded, “Yes! I am very happy!” He meant it. He still means it, and so do I.

I realize that my last few blogs have encouraged friends and loved ones to reach out to Gage and me for both physical and emotional support. Today, I want to explain to you that even though we have a difficult life, our house is filled with laughter, we praise God every day for countless blessings in our life, we celebrate the improvements that my body has made since PT Bootcamp began this summer, we hold on tightly and with joy to the love that we share and to the love that satisfies our emotional and spiritual needs. We ARE happy.

It is important to recognize that a person can face challenges – even a lifetime of challenges – and still find reasons to smile. Life is filled with choices. Gage and I may face more tests and trials than the average thirty-something-year-old couple, but we choose to look for the good in our life and to NOT focus on the bad. When times are hard, we reach out to one another – and to our family and friends – for encouragement. We want to be that encouragement to our family and friends, too! We want to share our happiness!

I may be S.A.D., but I would not ask for it to be any other way.

Matthew 5 – The Sermon on the Mount (ESV)
1 Seeing the crowds, he went up on the mountain, and when he sat down, his disciples came to him.

The Beatitudes

2 And he opened his mouth and taught them, saying:
3 “Blessed are the poor in spirit, for theirs is the kingdom of heaven.
4 “Blessed are those who mourn, for they shall be comforted.
5 “Blessed are the meek, for they shall inherit the earth.
6 “Blessed are those who hunger and thirst for righteousness, for they shall be satisfied.
7 “Blessed are the merciful, for they shall receive mercy.
8 “Blessed are the pure in heart, for they shall see God.
9 “Blessed are the peacemakers, for they shall be called sons[a] of God.
10 “Blessed are those who are persecuted for righteousness' sake, for theirs is the kingdom of heaven.
11 “Blessed are you when others revile you and persecute you and utter all kinds of evil against you falsely on my account. 12 Rejoice and be glad, for your reward is great in heaven, for so they persecuted the prophets who were before you.