More Than Enough

Can this last forever?

I experienced life with LESS PAIN for five days in a ROW!

I often forget what it feels like to feel good. I have chronic pain. Chronic pain means CONSTANTLY… ALWAYS… WITHOUT STOPPING…

Once, Gage told me that what he finds saddest about my circumstance is that I do not pray for no pain; I pray for less pain. I guess that, as a special education teacher, I learned long ago to set obtainable goals. Gage knows me well and he is correct. Given my past, and my current circumstances, I did not see “NO” pain in my future. But, I do pray for greater hope. And, what I whole-heartedly hope for is to wake up tomorrow being in less pain than I am in today.

My friend (and Pain Nurse), Chris, reminded me that my expectations are too low. She said, “Stephanie, God wants to give you more than enough! He wants to bless you exceedingly and abundantly!” In this regard, I truly need to work on my faith. “Enough” is what I have become accustomed, so “more than enough” often seems out of reach for me, my health, my finances and my circumstances.



Chris was right. Gage is right. I need to work on my Faith. One thing that God reminded me was that I need to keep looking to Him to provide. I explained in my last blog that recently, Gage and I were terrified that, come August, we would be out of Disability income and we would also have to take over the costs of my health insurance payments. Disability was approved for 12 months. During that time, my employer, Special School District, was also paying for my vision, dental and, most important, health insurance. In one week, I learned that both were expiring at the end of summer and my world was spinning.

What was I to do?

What were WE to do?



Gage is already doing everything he can to provide for our family. He got a new job with less travel (aka spends less money on gas) and he earns a higher salary. He also is teaching Summer School this year (and probably will for years to come) and is participating in as many extra Professional Development opportunities as possible. He is currently working towards getting his National Board Teaching Certification which, once completed, also qualifies him for an additional raise. What a hero!

As a family where one of the adults is disabled and unable to work, I believe that we are doing our best. Unfortunately, without Disability income and with the looming healthcare bills approaching, Gage and I were at a loss. I did everything I could to ensure that I would get an extension on Disability. I completed all of the paperwork before the due dates. I followed up with emails and faxes to ensure that everything had been received. I contacted all of my physicians and helped them complete the paperwork to send to Disability. I participated in the last of many physical evaluations. All I could do next was wait. And pray.

At first, Gage and I prayed for the $600 a month that we need to pay for health insurance. When I mentioned this to Chris, she said, “Stephanie, don’t just pray for that! God wants to give you more!” I shared this thought with Gage. He agreed. The Word says, “Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.” (Ephesians 3:20-21). We started praying that God would provide. Instead of waiting the estimated 45 business days to learn whether or not my Disability was approved, I was given the Good News within three days. The Disability Provider approved another 12 months of supplemental income. This income will allow for Gage and I to pay and save for two years worth of health insurance!



Sometimes, it just takes one blessing to be reminded that life can be better, that God does listen, that He does want to provide and that, one day, everything will be okay.

I wish I could write that I am on day six of little-pain. Unfortunately, today the pain is back. However, today I have more hope. Today, I do not pray for less-pain. Today, I pray for a future without pain.

FAQs #4: What Does Permanent Mean?

What does Permanent Mean?

Different words have different meanings depending on their context. Gage and I celebrated our Wedding Anniversary on Monday. Regarding our marriage, Permanent means, “Til death do us part!” For my wonderful husband and I, permanent means FOREVER!!!

However, in terms of my Disability, the phrase that my Medical Team and I have created is, “Permanent means For Now.”

When I told everyone that my Medical Team labeled my disability is Permanent, I received countless worried (and even angry) responses. Loved ones did not like the idea of doctors deeming me, a young, thirty-one-year old as permanently disabled. They wanted the doctors to do more. They want me to see more specialists. They encouraged me to get fourth, fifth and sixth opinions – hoping that my disability would change.

I understand this heartache and desire more than anyone! However, in this case, Permanent is the BEST “label” for my circumstance. I cannot return to work. I am currently unable to manage my pain. I do not have a firm grasp on what my body can tolerate, especially since I can often endure one activity one day and I will crash doing that same activity two days later. Right now, the pain is unexplainable. Right now, the Medical Team and I are dealing with the consequences of my surgery. Right now, we are learning what makes me “different” from other people who have had a Spinal Fusion and, even more so, why I am not recovering.

For now, Permanent means:
- Until I can find the right doses of medication or treatment to successfully manage my pain SO THAT I can lead a better life.
- Until I have a better understanding of my pain tolerance and physical limits.
- Until we find a career path that does not cause my body to experience more pain.
- Until Gage and I are able to be foster or adoptive parents.
- Until surgeons, doctors or scientists determine another treatment that will “fix” what the spinal fusion did not.
- Until there are further medical advances to aid chronic pain.

People assume that the word Permanent is going to keep me from hoping that one day, I will heal. That is NOT the case! For now, the permanent label is allowing me the time off of work to dedicate to my recovery, to attend as many doctor appointments as necessary, to decrease the stress in my life and to have a supplemental income that provides the means for my medications, co-payments and insurance.

Praise Report: Because my Medical Doctors all agreed that my disability is permanent, my Disability Provider agreed to extend my Disability until June 2013. (A month ago, I was told that my disability approval would STOP in August – which terrified me). Gage and I were so worried that, without the supplemental income, we would not be able to afford private healthcare, my bi-weekly main management treatments or my new, expensive pain medication. This news is MUSIC to our ears! What happens next June? The Disability Provider will work with both me and my Medical Team to determine if, based on my experience and education, there is a job for which I am qualified and can physically work. I am excited about this! If there is a career out there that I can actually do, I want to know about it! And, if I am in the same, incapable position as I am now, then we will determine that and I can (hopefully) continue to focus on my recovery and working towards a less-pain-filled life.

Book Update: I am having the best time working with two of my best friends, Melissa and Stephanie, on my book! Melissa and Stephanie have graciously agreed to be my Editors. I have finished seven chapters, have three in-progress and three more outlined. We are conferencing every few weeks to brainstorm and edit. These two ladies are encouraging me to enjoy the JOURNEY of writing this book, not just the finished product! I will blog more about my book SOON! Stay Tuned!!!

This completes the “FAQs About My Surgery” portion of the blog. If you have any more questions, leave me a comment or email me! I thank you for encouraging me to realize that, despite my disability or “label” – my pain does not define me and that I can celebrate everyday successes WITH you!

FAQs #3: Another Surgery?

FAQ #3: Can I Have Another Back Surgery?

You may recall that I was told by The Surgeon that it could not be determined whether or not the Spinal Fusion Surgery actually “worked” until a year passed. Part of my surgery entailed The Surgeon adding a Bone Growth Protein, which is like playing Dr. Frankenstein – NEW bone literally grew in my back.

What does this mean? The NEW bones created their own fusion. With or without the screws and the rods that were inserted into my body, there are also NEW bones that are now “fused.” My body is literally STUCK in this fused position because of the new bones.

After the year was up (July of 2011), the pain was even worse than before I had the surgery (June 24, 2010). The Surgeon said that, “because the bones grew and the fusion was not rejected, the surgery technically WORKED.” Can you believe that? I was in MORE pain, but The Surgeon was taking credit for a successful surgery?

You may also recall that I made a deal with The President of the PT Facility that I would get a second surgical opinion from a surgeon of her choice. (Look for “Sweet Dreams” in my blog archive – dated August 17, 2011.) I made an appointment with Surgeon #2 in August of 2011. Surgeon #2, kind as he was, told me that, because of the NEW bones, I can NOT have another surgery. My body is now changed. I have new bones. My spine is fused – STUCK – in this new position. The only way to “un-fuse” the Spinal Fusion Surgery is to literally BREAK MY BACK. ALL of the bones around the Fusion would need to BREAK. Then, IF I healed “correctly” from a BROKEN BACK, then I could possibly have re-constructive surgery and THEN I would need to wait and see how my back would heal from THAT.

Is breaking my back actually an option? Not a chance in hell! (Sorry for those of you with sensitive ears!) Surgeon #2 was being facetious. It was his way of letting me down gently…

Long Story Short… Until there are Medical Miracles or Advances, another surgery is NOT an option for me.

BUT - one of my dear friends (and a blog-reader), Paula, sent me this link: http://www.cbsnews.com/8301-3445_162-57428677/a-new-hope-for-back-pain-sufferers/?tag=contentBody;cbsCarousel
(cut and paste it into your browser). CBS did a Sunday Special on NEW ADVANCES in back pain treatments for people who suffer after spinal fusion surgeries. The FDA is expected to approve this drug/procedure in 2015 - I just need to be patient!

Still wondering what exactly “Permanent” Means? I’ll explain in my next blog – keep reading!

Fun Stuff: The book is going great! I have written 8 out of 13 chapters! I have two terrific editors! The website is coming along nicely! Things are looking good!

FAQs #2: Why Spinal Fusion Surgery?

FAQ #2: Why did I have surgery in the first place?

I was diagnosed with Scoliosis when I was 13 years old. Certain types of spinal deformity, such as Scoliosis, are commonly treated with Spinal Fusion Surgery. Scoliosis is an “S” shaped curvature of the spine that sometimes occurs in children and adolescents (adults do not "out-grow" Scoliosis). Fusion is typically recommended for very large curves or for smaller curves that are getting worse.

I was diagnosed with Chronic Pain Syndrome in 1998, when I was 18 years old, due to the persistent pain in my low back. From 1998 – 2005 I saw physical therapist after physical therapist to help relieve the pain. When PT wasn’t enough, I saw a chiropractor for three additional years. Nothing seemed to help. The pain was always there.

In June of 2009, my (then future) mother-in-law suggested that I get an MRI. The results revealed that I have Degenerative Disc Disease. For a year, I saw the Pain Doc. We started with cortisone injections. They didn't work. Then, I saw a Radiologist and received 3 rounds of Epidural Steroid Injections. No difference in pain. I was prescribed medication after medication which only masked the pain. The Pain Doc then prescribed another round of physical therapy. I went dutifully every week for months. After no significant changes were made, he recommended that I consult with an Orthopedic Surgeon

In October of 2010, I saw The Surgeon for the first time. He sent me to yet another physical therapist. After working diligently with her for months, The Surgeon finally agreed to a Pre-Operation (diagnostic) Procedure called a Discogram which would determine if I was a candidate for Spinal Fusion Surgery. Lucky for me, I was...

The rest is history…

For more information, look at my blog titled: "For You Doctors Out There" in my Blog Archive (July 5, 2010).

Still wondering if another surgery can “fix” me? Keep your eyes peeled for the next blog!

Fun Stuff:
I’m still working on my BRAND NEW WEBSITE, so keep your fingers crossed and ideas coming!

Frequently Asked Questions

FAQs about my Disability

There have been so many suggestions, questions and recommendations regarding my disability and the “latest news” that I thought it would be easiest to break it down and clarify what-is-what:

Frequently Asked Questions:
Have you gotten a second opinion?
Why did you have surgery in the first place?
Can you have another surgery?
What does Permanent mean?
Frequent Comment: You are not Your Disability…

FAQ #1: Have I Gotten a Second Opinion?
To assure all of you that I do not take ANY first opinion lightly, you can rest that I have, in fact, gotten SEVERAL second opinions.

On Thursday, my visit to my Primary Care Physician, Dr. Scott, was as expected. He agreed with the other opinions of those on The Team: It is time to move towards Permanent Disability. Dr. Scott explained that “because of the persistence of the symptoms [aka, pain], it is time to pursue a more long-term decision.” Dr. Scott is one of the greatest physicians with whom I have seen! He is caring, gentle and thorough. He ordered labs (blood-work) so that, when all of the “weaning” stops, I can make sure that my liver is safe, along with my cholesterol, calcium levels, all of that fun stuff. Most importantly, I trust him.

To assure you even further, I have not only gotten the opinion of my Pain Doc, but from: The President, The Exercise Guru, my Case Manager & now my Primary Pain Doctor. Now I have gotten five opinions – all in agreement that I need to switch from Temporary to Permanent Disability. This is not “good news” it is merely the truth. The facts. (Please know that I greatly appreciate all of your concern regarding this new development!)

More FAQs to come, so keep reading! Share your thoughts – and your questions!

On a fun note, I had a meeting with my Creative Director, Brandon, last week (in addition to all of the not-so-fun doctor appointments). Brandon and I have been working on my up-coming Website Launch, along with my book. The website is coming along and I cannot wait to share it with all of YOU!

What would you like to see on the new website?

The News

I am sorry to have kept you in suspsense. Rather than re-write history, I will share with you the letter that Gage and I sent to our family last weekend:

Hello my Loved Ones!

I wanted to update you with the latest news about my back & Disability...

On Friday, I saw my Physiatrist, The Pain Doc, whom I have been seeing for my pain for over 3 years. Up until now, he has been "on board" with me trying different Vocational Rehab trials, pain management techniques to maximize improvements and even been in agreement that - if my ob says I can one day get pregnant - he'd help me get through the pain of pregnancy. He, like my entire PT Team had hope that I "could" get better; that I "might" return to some form of work; that we "could," one day have children and that the pain, "perhaps," could reduce through interventions. However, Friday was "The Day of Truth."

As most of you know through seeing me, talking to me or by reading my blogs, my pain has been spiraling out of control for the past few months, and even more severely over the past 3 weeks. Seeing The Pain Doc was part of the "What Now?" Process. On Friday, The Pain Doc regrettably informed us that this is, indeed, a "PERMANENT" situation.

That being said, he wants to start a more "aggressive" pain management treatment (stronger meds), he agrees that we should not biologically pursue having children and that he will, from the medical doctor's standpoint, support the process of filing for Permanent Disability. He wants me to continue my other treatments, too (Physical Therapy, Acupuncture, Chronic Pain Counseling, Biofeedback, etc.).

Also, on Thursday, (while preparing me for The Pain Doc's appointment) my Physical Therapist Team says that they fear I might be moving in another direction (aka - "not foward"). The fusion has now caused a trigger of side-effects, one in which they explained is "the surgeon did not fix the curve of your spine, and now that your lower-back is fused (aka 'stuck') the Scoliosis has no where to go" (so it is affecting/hurting other parts of my body). They are working on "respiratory-re-setting" (because my diaphragm is "compromised" from the Sciolisis) along with other types of alignment and traction treatments so they can work on the new pains in my: hip, upper back, right low-back, neck and both shoulders). Fun stuff to hear, huh?

Even though Gage and I have discussed this (the possible "permanency" of pain and a lifetime of being disabled) for the past year, the reality of our/my situation hit us both very hard - in shifts - over the past 72 hours...

We knew I'd probably NEVER teach again... We thought I might not be able to bear children phyically (and have even shared with some of your our thoughts on adoption and foster care), we discussed that this could affect a lifetime of: holidays, vacations, family-gatherings and even weekends. But, when a doctor agrees that I do, in fact, have a PERMANENT Disability, it stings. It hurts... It is downright devestating... (to BOTH Gage and I).

I talked to my mom and dad Friday Night when I got home from the appointment. So lovingly, they said, "We'll get through this together!" and "We know you will one day have a family - and we will love and accept anyone in that family!" and "We'll work harder on organizing the holidays so that we can all be together" and things like that. We recieved an exceptional amount of support from that!

Gage and I know that you will respond the same way. For that, we are so thankful and so blessed to have each of you in our life!

I pray that this does not truly affect the rest of my life - that one day I will be healed. We are open to finding new treatments, going to other hospitals, seeing new doctors, looking for alternative healing methods, and waiting for medical advances. We are also hoping that "permanent" is not exactly our "forever."

But, for now, if I (or we) have to tell you "no" because of my pain, or cancel last-minute, or re-arrange something due to my disability, I wanted you to know that these are not things done lightly or without love. I know that you all love us and want the best for us - and for that, Gage and I are so thankful! I love each of you and I know that you will support Gage and I down this long road ahead of us.

Love,
Steph and Gage

For some of you, this may not be "news" - but to us, the transition from "TEMPORARY" to "PERMANENT" was a huge one. Gage and I needed time to digest & process the information before we opened it up to others. Many of you, I know, also have permanent conditions. I applaud you. I applaud you for living your life and for showing me how to LIVE ON - with a Permanent Disability.

I have already gotten a second opinion; however, I am still scheduled to see my Primary Care Physician this Thursday to bring him up to speed. After that, we are looking at a great deal of paperwork as I begin the steps for applying for Permanent Disability (please pray with me that it gets approved so that Gage and I can receive some sort of financial support) and then I need to let the school district know whether or not I am completely resigned... Lots to do. Stay Tuned!

I Survived!

I was so touched by the responses I got in regards to your prayers and your encouragement as I prepared for the PT Reevaluation this week. Thankfully, it went very, VERY well!

I showed up at The Facility in a great deal of physical pain and exhausted due to the change in meds. One look at me and The President and my Case Manager (CM) said, “We can’t test you today! That would be human cruelty!” They laughed, I smiled and realized that I was holding my breath, so I sighed in relief, and we all walked together into one of the patient rooms.

I handed them the update that I had created, explaining to The Facility all of the changes in my medication, along with the Pain Doc’s Recommendations and Diagnosis. The President asked me how I was feeling. Before I answered, she said, “Let me guess, nauseous, exhausted, jittery, feel like your skin is crawling & like you are losing your mind…” I nodded my head ‘YES’ to all of the above.

“What about your pain?” CM asked.

“Well, I actually have been feeling like I have the flu, because of the medicine, so I cannot tell if my pain is better or not yet...” I felt stupid, but both CM and the President nodded their heads in understanding, as if it made sense, so I felt better.

CM had to leave to see another patient, but The President stayed with me for over an HOUR. We discussed how to best detox off of my medicine and help my body better adjust to the new meds. She validated that she agreed with the Pain Doc's choice in medication. She explained that, “A person who has chronic pain builds up a tolerance to medication, so a good doctor recognizes when his patient is at that point and helps the patient switch to another medication that will better manage the pain.” Makes sense.

We discussed The Pain Doc’s New Diagnosis (to be revealed to my Blog Readers soon, I promise). She agreed.

She then said, “I will complete the forms that your Disability Provider needs that says that: Stephanie was unable to complete the Evaluation today due to severe acute pain. [And] Stephanie was unable to remain static positioning during the appointment." (I was unable to sit still the entire time; so The President started documenting HOW often I “squirmed” so that she could use it for “observable data” confirming that I require restrictions when it comes to maintaining positions for extended periods of time).

Reevaluation Complete! She did NOT make me even try one activity! I survived! Through my pain, I was not asked or expected to do anything AND the visit was still documented as an evaluation. Thank you, Lord!!!!

Then, we discussed faith.
The President said, “Stephanie, I survived cancer, which I had for 10 years. THAT will take the narcosis out of anyone!” She laughed and continued, “The Bible doesn’t say, “I will make you sick and this is my plan for you,” the Bible says that God will BE BY YOUR SIDE – through WHATEVER you are going through. Tears filled my eyes. It was refreshing to talk to The President like this. We spent another ten minutes just talking about faith and life.

THIS was the woman whom I had met a year and a half ago. THIS is the reason I decided to stay at The Facility. THIS is what makes The Facility “different” than other PT places in which I have gone. The staff, despite our few bumps, knows ME. They know what I need to hear – and what will encourage me to keep going. They want me to get better. They know me as a person, not just as a patient.

For those of you reading this – Thank you for your prayers! Before I went to the appointment, I sat down and just bowed my head. I gave the visit to God and prayed that I would get through it… He listened. I am not healed. I am still going through a rough time, physically and emotionally, but at least I know that my friends, my family, and God are with me.

For those of you reading this who also experience chronic pain, I encourage you to think about The President's reminder: God is With YOU!

I have one last appointment with my Primary Care Physician next week. After that visit, I will share with you the consensus of the New Diagnosis and what our (me and Gage’s) next steps are. Keep Reading – I promise to share more soon!