I've Moved! Go to StephDodson.com

As of September 1, 2012, I will no longer post on this blog site. It is my sincere pleasure to send you to the next phase of my journey:

www.StephDodson.com

What can you find at StephDodson.com?

1.       Encouragement if you or someone whom you care for has a disability or chronic condition.

2.      A plethora of ways to assist those in your life that are affected by Invisible Disabilities, Diseases and Chronic Pain.

3.      Helpful information regarding the beginning stages of Disability and other Organizations that provide for those affected by disabilities.

4.      Easy access to my blog, as well as other useful links and articles.

What can you do on StephDodson.com?

1.       SUBSCRIBE! Your email address will NOT be shared with anyone. By subscribing, you are simply allowing the website to send posts and website updates directly to you. You will not be contacted by outside parties nor will your contact information be shared with anyone besides me - Stephanie Dodson.

2.      SHARE: You can SHARE: Posts, Pages and Links from the website on all of your favorite social media outlets, such as Facebook, Twitter and email.

3.      COMMENT: You can COMMENT on Posts and utilize the new website as a forum and chat room to discuss your thoughts and questions with others who participate in the website as well.

As of September 1, 2012, I will no longer post on this blog site. To continue to read my blog, and for SO much more, please go to www.StephDodson.com  I cannot wait to see you there!

Writer's Block

Are you the type of person who when someone asks, “Tell me a joke!” is quick on your feet? Do you have them belly-laughing and eating out of the palm of your hands?

I am not that person… I am not good with commands and performances.

I am supposed to be working on the book. My book. “Taking Me Back” the semi-autobiographical journey of learning how to live with and help those affected by Invisible Diseases.

I love to write. Writing is not only my passion, it is therapeutic. Why, then, can I not sit down to work on those last three chapters?

 

Steph working on her latest writing project.

Throughout this journey of becoming an author (and disabled), I have most enjoyed the connection with others. This experience has allowed me to open myself up to the world, primarily through my blog (so far). The result has been that you, the reader, has opened yourself up, too. Where do you think most of my book material is from? It is not just MY story – it is: Tara’s and Mike’s and Melissa’s and Stephanie’s and Devon’s and Jessica’s and Erika’s and Michelle’s and Lisa’s and Steven’s and MANY MORE!

In the book, I am honored to tell your story. I connect with your story. My PURPOSE for writing the book is to make sure that your friends and family and spouses and colleagues and other loved ones get a better glimpse into your life so that they can better relate to your condition, needs and so they can love you greater…

These last three chapters have been a challenge for me. Their tentative-titles are:

• The Grieving Process
• The Difficulty of Getting Diagnosed
• Being More than Your Disability

As you can tell, the words “grief” and “diagnosis” and “disability” are typically scary and involve a rough roller-coaster of emotions. I thought I was ready to share those emotions in my book. I have the stories to tell – both mine and those who I interviewed – but I have Writer’s Block. Or, maybe I have Avoidance Issues…

What I have found recently is that no matter how much you attempt to educate others on a disability, there are always those who are uncertain (or disbelieving) and there are those who are over-protective.

I am the over-protective type.

 

Encouragement goes a LONG way!

I was working on my new website yesterday and, while it was “live,” a Scoliosis doctor hopped on my page. He found one of my posts and left a comment. In this comment, he told me that I should have done more “scoliosis-specific exercises” and I should not have had the surgery; in fact, if I had seen HIM then I could have avoided surgery and I’d be healed. Then, he referred to his Scoliosis treatment center.

 

"Greedy Doctor" from: grinningplanet.com

I was infuriated! This doctor obviously did not read ANY of my posts – nor did he bother even skimming over the new “About Steph” page that gives a quick timeline of the events leading up to my surgery and, unfortunately, my DISABILITY. Even worse, he tried to get FREE advertising on my website by feigning concern over my “situation” and misleading YOU, my readers, into thinking that THIS was a doctor who cared enough to comment on a “poor girl’s blog…”

DISGUSTING!

One of the main reasons that Brandon first approached me to create my own website was so that I could control the advertising content on my page – not Google or Blogspot or any other blogger-domain. Me. I could control who I would endorse and who I would delete. Months ago, when I attempted to allow advertising on my blog, Brandon was outraged when he saw an advertisement for a “laser spine surgery that would fix anyone’s back problems.” This ad made my disability seem irrelevant. It acted as if my ENTIRE life’s story was a lie – that if I would ONLY buck-up and have THIS magical surgery, I’d be “all better…” Immediately, we decided to forbid any external ads on the current blog. Next, we concluded that we would design a website that allows me – the administrator – the opportunity to endorse the companies that want to HELP people and not just turn profits.

 

THEE Brandon of Brandon Wade Visuals

Since the Scoliosis doctor felt that he had the right to write on my website, I followed the link that led to his Facebook page and posted a comment on his wall. I exclaimed my repugnance at his efforts to “use” my blog to gain patients. (Of course, he immediately deleted my comment – as I did his…).

What bothered me the most about this doctor was what bothers me about many physicians with whom I have encountered over the years. This was not a doctor who was seeking a patient in need and trying to help.

This was a physician who was looking at the patient as a profit, not a person.

 

Another Greedy Doctor from:lib_.sfu_.ca-website.gif

Even when physicians are NOT concerned about profit, in my experience, it has been rare that I have found one who cares about the PERSON, the PATIENT, the PAIN or the PROBLEMS…

I am very blessed at this stage in my treatment to now be surrounded by a Medical Team who I feel knows me beyond my disability. My Primary Physician, my Pain Management Specialist, my Pain Nurse, my Physical Therapist and my Pain Counselor all know me as STEPHANIE. I am not “patient number 2200978” or “the one with Failed Back Syndrome.” They know me as a woman, a wife, a daughter, a sister, a writer, a Christian and a friend. They know me as ME!

 

"A Doctor who CARES!" from:copewithalzheimers.com

This mini-feud with the Scoliosis doctor made me more confident in the new website that we are launching on September 1^st.

When Brandon and I sat down to design the website, he had his purposes for it and I had mine. Together, we have created a site where ALL people can go who are affected by Invisible Diseases. This is not a website JUST for the patient; it is for the people who LOVE the person in their life who has a chronic condition. We wanted this site to be more than just a blog. I conducted private surveys and asked regular blog-followers: what do YOU want to see on this website? And, I hope that when you see the site, you see what you asked for: information about disability, more blog posts, encouragement, inspiration, links to forums and chat rooms, ways to help your loved one, updates on my book, helpful links to social security disability sites and MORE.

What you will NOT find is an advertisement from a random doctor who tells you that YOUR life could be different “if only” he treated you.

Don’t get me wrong – eventually, I want to open the website up to specialists who want to provide education or services to people who are affected by Invisible Diseases. However, those specialists will NOT be the ones who say, “It looks like you are all better now” because, as I said, that stupid Scoliosis doctor SKIMMED my posts. As we have learned, a disease is INVISIBLE because the one who suffers typically LOOKS GOOD on the outside. I may be smiling on the outside, but my pain is always torturing my insides!

 

Invisible Disabilities "But You Look Good!" at:redbubble.com

Yes, this post is a bit of a rant… It is a bit of therapy for me… It is maybe even a way to procrastinate from writing the emotional chapter about when Gage and I learned that we should not biologically have children and we had to grieve that terrible moment…

But even more so, this post is to validate that the new website is important. The new website is another way that I can SERVE you – my friends and loved ones – who want to know MORE about chronic pain, disabilities and Invisible Diseases. More so, it is a way for me to protect readers against people like the Scoliosis doctor who want to use and abuse their condition for profit.

 

ADVOCATE from:uwnefl.org

If I have learned anything over these past years of pain and treatment it is to never be afraid to ADVOCATE for your rights as a PERSON – even if you are a “just" a patient…

What Went Wrong?

Refresher: Last week, we remembered WHY I had spinal fusion surgery over two years ago... Here, we recall the phases of recovery in which I endured, including learning that I was NOT recovering as expected.

Recovery following Spinal Fusion Surgery

 

 

Recovery following fusion surgery is generally longer than for other types of spinal surgery. Patients generally stay in the hospital for three or four days, but a longer stay after more extensive surgery is not uncommon. A short stay in a rehabilitation unit after release from the hospital is often recommended for patients who had extensive surgery, or for elderly or debilitated patients.

I was scheduled to be in the hospital for 6 days. The surgery went beautifully (as described by my doctor); what was supposed to take 8 hours took less than 5 due to lack of complications. The surgeon ordered 6 days of in-patient recovery.

By the morning of the day after my surgery, the hospital staff had me sitting up and walking. By day 3, I was (slowly and painfully) doing laps around the hospital floor. By day 4, I was climbing stairs. By day 5, I was so desperate to be home and in my own bed that I begged the fellowship doctor to release me, even though I had fainted that very morning. I wanted to go home with my new husband (we were married three weeks before the surgery).

 

It also takes longer to return to a normal active lifestyle after spinal fusion than many other types of surgery. This is because you must wait until your surgeon sees evidence of bone healing. The fusion process varies in each patient as the body heals and incorporates the bone graft to solidly fuse the vertebrae together. The healing process after fusion surgery is very similar to that after a bone graft.

In general, the earliest evidence of bone healing is not apparent on an x-ray until at least six weeks following surgery. During this time, the patient’s activity is generally restricted. Substantial bone healing does not usually take place until three or four months after surgery. At that time activities may be increased, although continued evidence of bone healing and remodeling may continue for up to a year after surgery.

The length of time required for a patient to take off of work to recover depends on both the type of surgery and the kind of job one has. It can vary anywhere from approximately 4-6 weeks for a single level fusion in a young, healthy patient with a sedentary job to as much as 4-6 months for more extensive surgery in an older patient with a more physically demanding occupation.

 

Prior to the surgery, The Surgeon anticipated that I would return to work at the beginning of the 2010-2011 school year, which would have been five weeks post-surgery. He explained that since I was a healthy, young patient, and because there were no complications during the surgery, I would have a fast, successful recovery. However, during my four-week check-up following the surgery, my pain was still so severe that I required the use of a walker, bed-rest and large doses of pain medication. The Surgeon altered his original work-release, allowing me to return to teaching by working only half-days for two weeks (opposed to full-time). The Surgeon still thought that I could return to work full-time at week seven. My body told me otherwise...

Following spinal fusion surgery, a postoperative rehabilitation program may be recommended by your surgeon. The rehabilitation program may include back strengthening exercises and possibly a cardiovascular (aerobic) conditioning program, and a comprehensive program custom designed for the patient’s work environment in order to safely get the patient back to work. The decision to proceed with a postoperative rehabilitation program depends upon many factors. These include factors related to the surgery (such as the type and extent of the surgery) as well as factors related to the patient (age, health and anticipated activity level.)

The Surgeon did not prescribe me any physical rehabilitation outside of the occupational therapy and physical therapy treatments that I experienced during those five days I stayed in the hospital. I returned to work without the skills to walk, sit, bend forward or climb stairs with my new body….

Failing to Recover: Four Months Post Surgery

At my 4-month check-up, I was in excruciating pain daily and I was still unable to return to work full-time. I required the use of the orthopedic walker, which “typical” patients abandoned after four weeks. I also continued to need prescription pain medication and muscle relaxers. Every day, life was unbearable. My pain was undoubtedly WORSE after the surgery than before. My mobility was brutally limited and my pain intolerable. However, the x-rays revealed that there was nothing “wrong” with the spinal fusion itself. The rods and screws were in their appropriate places. The bone graft was successfully taking. The Surgeon told me that I was "an outlier" and that he “did his part” when he successfully completed my surgery. As often happens to people who have Invisible Disabilities or Chronic Pain, The Surgeon then told me that “Maybe the pain is in my head.” He recommended that I contact a Biofeedback Specialist. The rest, according to The Surgeon, was up to me….

The Six Month Mark

On Christmas Eve of 2010, I reached my 6-month mark of recovery. I continued to only work three days a week, which daily caused me insufferable agony and stress (physical and emotional). I still required pain medication and muscle relaxers, prescribed by The Pain Management Specialist, as The Surgeon refused to acknowledge my pain. Through a Physical Therapy consult at The Surgeon’s office, I was told to walk three miles a day – WITH my WALKER – outside, in the snowy streets of Saint Louis in December, which I did daily. Despite all of my efforts, I was still restricted from "normal" life because the pain was so relentless...

 

Trying Anything to Get Better

To give The Surgeon the benefit of the doubt, as well as to prove him wrong, I began the process of Biofeedback Therapy with a wonderful specialist named Mr. Mark.

Biofeedback Therapy works primarily through machines that monitor your condition and report them back to you in real time, like your blood pressure, heart rate, skin temperature, your sweat and your muscle tension. The theory is that by being able to see what it is on a machine, you can train yourself to understand the feelings you receive. It is also a form of alternative medicine, in that people train themselves to know their individual responses to activities that tend to trigger pain. One result of being able to know your body's systems, through Biofeedback Therapy, is that you can end up controlling more muscles than were previously thought to be uncontrollable. You can see what happens and are able to gain control over such things as your own heart, temperature and even muscle tension.

After four months of weekly Biofeedback Therapy sessions, Mr. Mark was NOT convinced that my pain was psychological, as determined by The Surgeon; therefore, he did not see a need for Biofeedback Therapy. Rather, Mr. Mark suggested that my pain was, in fact, physical or mechanical. To be sure, Mr. Mark conducted a physical evaluation. The evaluation revealed that there were mechanical problems with my low back as well as my left hip. Mr. Mark recommended that I get another MRI and that I schedule an appointment with the leading Physical Therapist in his office. The MRI revealed that my left hip was sprained. The Physical Therapy evaluation revealed that I have Failed Back Syndrome-Post Spinal Fusion Surgery and Chronic Pain Syndrome.

According to Spine-Health, Failed Back Surgery Syndrome (also called FBSS or Failed Back Syndrome) is a generalized term that is often used to describe the condition of patients who have not had a successful result with back surgery or spine surgery and have experienced continued pain after surgery. Unfortunately, back surgery or spine surgery cannot literally cut out a patient’s pain. It is only able to change anatomy, and an anatomical lesion (injury) that is a probable cause of back pain must be identified prior to rather than after back surgery or spine surgery.

I immediately began physical therapy with multiple PTs at Mr. Mark’s office, where I have continued treatments 1-2 times weekly. The PTs determined that the Spinal Fusion actually restricted much more than just the bulging discs in my back; rather, it was the cause of severe immobility of multiple joints in my body. This immobility is the primary source of my pain. Additionally, due to the Spinal Fusion, my body will remain immobile indefinitely. Upon learning this information, I consulted with The Surgeon, who refused to comment on the findings of the Physical Therapists. I then saw a Second Surgeon who explained that my Spinal Fusion had “took” – which meant that the rods and screws were now a permanent part of my body – and that there were no more surgical options for me. He told me that I needed to “find ways to learn to live with the pain.”

Besides weekly physical therapy, I continued to see Mr. Mark for Chronic Pain Counseling. I also spent a year getting Acupuncture Treatments and added weekly Manual Therapy to my treatment regimen. Additionally, Mr. Mark was one of the many people who encouraged me to write this blog.

This is my story of getting diagnosed with a disability and learning how to live with my painful and invisible disease.


Information from:
WWW.SPINE.ORG
http://en.wikipedia.org/wiki/Spinal_fusion
http://www.biofeedbacktherapy.net/
http://www.spine-health.com/treatment/back-surgery/failed-back-surgery-syndrome-fbss-what-it-and-how-avoid-pain-after-surgery

Why Spinal Fusion Surgery?

It has been over two years since my surgery and yet it is so easy to forget how it all began...  This is a "refresher" post to better help you understand what led to my spinal fusion surgery.

What is Spinal Fusion Surgery?

Spinal fusion is a surgical technique used to join two or more vertebrae. Supplementary bone tissue, either from the patient (auto graft) or a donor (allograft), is used in conjunction with the body's natural bone growth (osteoplastic) processes to fuse the vertebrae. This procedure is used primarily to eliminate the pain caused by abnormal motion of the vertebrae by immobilizing the vertebrae themselves.

When I finally found my way to The Orthopedic Surgeon's Office, I had experienced low back pain for over 10 years; that was over 1/3 of my life....

What does Spinal Fusion Surgery Treat?

Certain types of spinal deformity, such as Scoliosis, are commonly treated with spinal fusion. Scoliosis is an “S” shaped curvature of the spine that sometimes occurs in children and adolescents. Fusion is indicated for very large curves or for smaller curves that are getting worse.

I was diagnosed with Scoliosis in 1994. I saw a Scoliosis Specialist for 3 years; however, I was never treated beyond consultations. My primary curve was in my low back – at about 38-degrees – and my secondary curve reached my upper back, in-between my shoulder blades. A curve is considered severe at 40-degrees or greater. The Scoliosis Specialist said that my curve was "moderate" and that it was not severe enough for further treatment....

Another condition that is treated by fusion surgery is actual or potential instability. Instability refers to abnormal or excessive motion between two or more vertebrae. It is commonly believed that instability can either be a source of back or neck pain or cause potential irritation or damage to adjacent nerves.

During my Junior Year at college (2001), I first began experiencing severe back pain that greatly impacted my mobility and lifestyle. I was prescribed 12 sessions of physical therapy. After the 12th visit, the PT explained that I "knew how" to execute the exercises and as long as I "kept it up" the pain would be minimized. The pain decreased, but it never disappeared….

In 2003, I was the victim of a drunk-driving accident. While my car was totaled, my back was "only sprained." The driver did not have insurance. I was young and did not know to pursue appropriate health care. I was treated by a chiropractor for a few weeks then was released. The pain, however, never ceased….

In 2007, a series of x-rays revealed that I had bulging discs along my vertebrae. I was diagnosed with Degenerative Disc Disease and Annular Tears….

The Controversy behind Spinal Fusion Surgery

Spinal fusion is sometimes considered in the treatment of a painful spinal condition without clear instability. A major obstacle to the successful treatment of spine pain by fusion is the difficulty in accurately identifying the source of a patient’s pain. The theory is that pain can originate from painful spinal motion, and fusing the vertebrae together to eliminate the motion will get rid of the pain. Unfortunately, current techniques to precisely identify which of the many structures in the spine could be the source of a patient’s back or neck pain are not perfect. Because it can be so hard to locate the source of pain, treatment of back or neck pain alone by spinal fusion is somewhat controversial. Fusion under these conditions is usually viewed as a last resort and should be considered only after other conservative (nonsurgical) measures have failed.

In October of 2009, I saw The Surgeon for the first time. He sent me to my third physical therapist that year. After working diligently with this PT for months, The Surgeon finally agreed to a pre-operation procedure conducted by an Anesthesiologist called a Discogram. A Discogram is a diagnostic procedure that determined whether I was a candidate for Spinal Fusion Surgery. Lucky for me, I was....

Before my surgery, I made an appointment to get a second opinion from a Spinal Surgeon at my Pain Specialist’s office. This Surgeon told me NOT to get the Spinal Fusion Surgery. Instead, he suggested that I get another type of surgery where he would insert an electrical stem product attached to my spine. This product would help decrease my back pain. When I asked the Second Surgeon if his option would potentially “fix” the problems with my spine (the mobility and bulging discs) he said, “No.” When I asked the Second Surgeon if his surgery was a permanent solution to my chronic pain, he said, “No, you would need to have this surgery again EVERY FIVE YEARS.”

My Decision to have the Surgery

In 2007, the intense pain that was once in mild remission, resurfaced. I saw a chiropractor who asked me, "Do you want to have surgery or do you want to try alternative methods?" Of course, I said, "I do not want to have surgery!" What the doctor failed to tell me was that upon reviewing my x-rays, he saw that I had bulging discs on multiple levels of my spine. He withheld this information so that he could "fix me" himself. I saw this chiropractor for over two years. At my first appointment, the doctor told me that, “Had I seen a chiropractor when I was first diagnosed with Scoliosis, my curve could have been mostly, if not entirely corrected.” However, because I was an adult, we could only hope for some mild correction of my spinal curve. During my two-year treatment with the chiropractor, there were weeks when the pain was so great that I was required to attend three appointments a week; other times, I saw him once every three weeks for maintenance. Despite the appointments and the adjustments, he never "fixed me.” My curve remained the same degree, my pain persisted and my discs continued to bulge out of my spine….

In June of 2009, after a family vacation where my back pain was so severe I was greatly restricted from many of the group activities, my mother-in-law, Sandy, (who is a physician) encouraged me to call my primary care doctor and to get an MRI. The MRI results revealed that I had Degenerative Disc Disease (in addition to Scoliosis) and Annular Tears on multiple levels of my vertebrae.

During the year following my new diagnosis (Degenerative Disc Disease), I saw a Pain Management Specialist in addition to my primary physician. The Pain Specialist started my treatment with cortisone injections. The shots did not work. He then referred me to a Radiologist. At the Radiologist’s office, I received three rounds of Epidural Steroid Injections. I still had no difference in pain. That year, I was also prescribed medication after medication which only masked the pain, never finding a solution to stop the source of pain. The Pain Management Specialist then prescribed another round of physical therapy. I went dutifully to PT every week for months. After no significant changes were made, my physical therapist and my Pain Management Specialist recommended that I finally consult with an Orthopedic Surgeon. They agreed that I had tried ALL appropriate, non-invasive options without success.

Weighing my options I reviewed that: my Primary Care Physician, my Pain Management Specialist, The Surgeon, The Anesthesiologist and three Physical Therapists all agreed that I should have the Spinal Fusion Surgery. They agreed that the surgery could potentially correct the instability in my spine, for at least the next twenty years of my life, if not forever. Alternatively, The Second Surgeon recommended a surgery that would mask the pain and would need to be repeated every five years.

Using the information that we were given, along with a great deal of prayer and consideration, Gage and I decided that I should move forward with the Spinal Fusion Surgery.

I had surgery on June 24, 2010.

Stay tuned... In my next post, I will recap what went wrong with my recovery.


Information from:
WWW.SPINE.ORG
http://en.wikipedia.org/wiki/Spinal_fusion

The Birthday Blues

Birthdays have always been a big deal to my family. I am sure that they are a big deal to everyone’s families, but my family always made me feel like our Family Birthdays were a much BIGGER deal than anyone else’s. Part of the tradition was that we always celebrated each other’s birthdays on the actual day. When we were young, we did Dinner and a Movie – and of course the birthday boy or girl got to pick the flick and the restaurant. As we got older, mostly due to our work schedules, the movie part faded away, but we always had that Birthday Dinner on our birthday; of course, it was followed by cake and presents.

Since my spinal fusion surgery, birthdays have been… complicated. My birthday is on August 11th. I had my surgery on June 24, 2010. On August 11, 2010 – about six weeks post-surgery – I turned the Big 3-0. August 11th also happened to be the first day of school for teachers. Because I was in SO much pain from my first day back at work post-surgery, and I was a newly-married woman, my 30th birthday was the first birthday of my LIFE where I did not see my parents.

Now, there were many reasons behind this – none of which were my family’s fault. They would have jumped over the moon to be there with me on the day their oldest turned 30! I was confused... Gage and I were newlyweds and I thought that once you got married, you stopped seeing your entire family for everything and you shared those “special moments” with your spouse. That’s (mostly) what Gage’s family did – his mom lives in North Carolina, and most of his siblings live out of town - and they always celebrated birthdays through phone calls and cards in the mail. That’s what I was supposed to do now that I was a married woman, right?

On top of my newlywed nonsense, I was a teacher and August 11th was our first day back in the building for the school year. At that point in my recovery, we thought that I would be able to work, even though I required an armful of pillows, a mouthful of pain pills and I used a walker to get around the building. I had been struggling with immense pain since the surgery, and when my mom and dad and sister and brother-in-law offered to take me and Gage out to dinner ON my birthday that year, I had to say “no.” That first day back at work was so incredibly painful for me that as soon as I got home from work, I laid down on my couch and sobbed in agony. When Gage got home from work a few hours later, he did his best to treat me to a wonderful 30th birthday. He eventually convinced me that I would enjoy going to my favorite restaurant down the street. He promised me that if we went early enough, we would beat the dinner rush and I would be home in an hour. Gage was right. I made it through my birthday dinner. I enjoyed the time with my husband, but I really missed the rest of my family.

Of course, my Birthday Dinner was merely postponed. My dad’s birthday is on August 17th, so a few days later, all six of us (Kathy, Bruce, Bonnie, Shay, Gage and I) went to my favorite place then had cake and ice cream afterwards. But, my mom and I vowed that – as long as our family lived in the same city – we would NOT miss another birthday… EVER!

A year later, on my 31st birthday, my parents and Gage threw me a 30+1 Party. Since I was not well enough to celebrate turning 30 like most people my age, we just waited a year. I wanted to be sure that ALL of my family was there, so I invited my parents, my in-laws, my cousins, my aunt and uncle, my close friends and my neighbors. Gage serenaded me with the Karaoke machine, we played games that revolved around 30+1 (think Baskin Robins and 31 Flavors) and we enjoyed huge amounts of food and drinks. It was a wonderful party! The only problem was, I still did not know my pain tolerance and after only a couple of hours, my back was throbbing beyond comprehension and I spent the week following the party in full recovery.

My 32nd Birthday is this coming Saturday. At the beginning of the summer, my mom suggested that The Turners (we still refer to this group as “The Turners” even though there are technically only 2 Turners in the group) go to The Botanical Gardens Lantern Show. Since my birthday is on the weekend this year, and the Lantern Show only comes in the summer, we thought it would be the PERFECT celebration! My parents as well as Gage and I are all members of The Botanical Gardens. Gage and I typically go during the week, in the afternoon when it is less-crowded. That way, we can take our time. I can sit and rest when necessary. There is ample parking and not a large crowd pushing into us. However, we recently learned that The Lantern Show is not the typical day at The Gardens. It was estimated that over 15,000 guests attend The Lantern Show EVERY SATURDAY.

Immediately, we started strategizing when we learned of The Show’s popularity. My parents had already been to The Lantern Show this summer, and they explained that I would, without a doubt, require a wheelchair. They described the event “like a cattle herd” where there were bodies and bodies pushing into each other and prodding one another along. They said that there was nowhere to sit, either. The chair would be multi-functional. It would transport me when walking was too painful. It would release me when I needed to sit down but no bench or chair was available. And, it would protect me from the crowd.

I did not put too much thought into The Chair until yesterday. Gage called The Botanical Gardens to reserve a chair for me for this Saturday evening. Because I am so limited on how much time I can physically spend at The Gardens, we planned on arriving closer to sunset. The Lantern Show opens at 5:30pm but the lanterns are not lit until after 8:00pm. On average, my body can handle any social activity for no more than 3-4 hours. Keeping that schedule in mind, if I arrived at The Gardens at 5:30pm, then I would need to leave at 8:30pm. Very likely, the sun would not even be set by then! Unfortunately, The Gardens would not reserve a wheelchair for me. They recommended that we get there as soon as it opens to guarantee that I can use one of their chairs. Even when Gage explained to them my “situation,” they told Gage that they could not reserve me a chair. Gage started researching where else he could rent a wheelchair for me. He found a place that charged by the day. Gage and my mom worked out how they would get me the chair so I would have it at The Gardens, even if we did not get there until just before sunset. Then it hit me: I would be spending my 32nd Birthday in a Wheelchair.

I could not accept that fate. For some reason, borrowing a wheelchair from The Gardens after I had arrived, “in case” I needed it during The Lantern Show was something I could swallow; but renting a wheelchair for the weekend, loading and unloading it in The Botanical Gardens parking lot and wheeling it around the entire time was just too much for me to cope with.

My best friend told me “Don’t make it about the chair!” She instructed me to USE the chair as a means to enjoy The Lantern Show. She tried to encourage me that no one cared about the chair but me. And, she is right. But, I do care. This birthday, the chair wins.

For people who don’t have a disability, the concept of a wheelchair or other handicap support is simple. And even though I have come a long way with the acceptance of my condition, I am not prepared to be labeled or gawked at, especially on my birthday. I can remember how, before my surgery, I would have loved to have a handicapped parking sticker for those long shopping marathons. Today, however, I am going to my Pain Doctor to pick up my handicapped parking forms, and it makes me sad. Yes, I may get Spot #1, but at what cost? Similarly, if I used a wheelchair at The Botanical Gardens I would likely receive special treatment. But, even though it is my Birthday, I just want to be like everyone else…

We decided that on Saturday my family and I are going swimming. Even though I cannot technically swim, I can lie in a lawn chair and I can float on a noodle. My scar is almost invisible now, even in my bikini, and I can do (almost) everything that my family can do, too. It will be just like any other summer day at the pool, except we’ll have a good excuse to have ice cream afterwards.

Checks From God

“Blessed Be Your Name”
Matt Redman

“Blessed be Your name
When the sun's shining down on me
When the world's all as it should be
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name…

Blessed be the name of the Lord
Blessed be Your name…

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name”

They played this song in church a few weeks ago, and my heart swelled. Every time we sang the words, “You give and take away,” the last three years of my life flashed before me. We all know what has been taken away from me. But, did you know that I have been blessed as well?

First of all, I am coming to terms with my disability. Just as important, I believe that my loved ones are coming to terms with my condition as well. This is SUCH a blessing to me! The numbers of people who are willing to make accommodations to allow me to visit with them more often and with less pain are incredible. This makes life so much better.

Secondly, I am definitely being provided for! With a LOT of research, I finally understand the Disability System. Starting in September, I will be receiving partial benefits from not one but TWO Disability Providers. I am also awaiting approval from a third. Additionally, I am applying for a Student Loan Disability Discharge Program. Once I am approved, my loans are monitored for three more years. After the 3-year monitoring process is complete, then the balance of my loan – from the initial date of my disability – is FORGIVEN.

Thirdly, Gage and I are comfortably learning to living within our means. There have been times since I stopped working when we have felt like we were broke. But, we never once had to borrow a penny, put an item on the credit card or postpone a payment. We never went without food; we never risked the roof over our head. We put our money where our faith is and never went a month without tithing or giving to charity. For this, we feel very accomplished and our new lifestyle has become less and less of a sacrifice and more like a new way of living. It is like a debt-diet. Just like any nutritionist will tell you that “There is no such thing as a diet, just an alternative way of life,” I believe that any financial advisor would tell you the same thing about spending and saving money.

My mom taught me the phrase “Checks from God” when I was young. She used the term to refer to those unexpected extras that greet you when you least expect it. Whether it was a refund from an over-paid bill, a belated Birthday check or an At-A-Boy gift card from your boss, these generous surprises were always acknowledged and a special “Thank You” was raised in prayer. I believe that the two Disability Providers are my monthly Checks from God. This is also true for the Disability Discharge Program that I found and for the endless opportunities that arise where we are able to add to our Nest Egg. We are often surprised with gifts that we receive in the mail from our loved ones, for the $20 items that we sell on Amazon or the unexpected gas that a neighbor puts in our car (yes, this has happened!).

I could focus on everything that has been taken away from me since I first threw out my back three years ago on July 24, 2009. I could focus on everything that I do not buy when I go shopping or all of the extras that we have cut from our budget and lifestyle. But instead, I want to look at everything that has been given to me. Every time I post a blog, I am humbled by the influx of support that you show me. Not a single email, comment or Facebook post goes unnoticed. Thank you for being a part of the blessings in my life!

Toilet Paper

When I first moved out on my own, I adapted surprisingly well from living with my parents and roommates to being completely independent. The week I signed my Teacher’s Contract, I immediately scouted apartments. I knew exactly which part of town I wanted to live in and I was confident I could afford the rent as well as all of the living expenses. I made sure to have the basics: utilities, phone, water and I could even afford cable! I was not fazed by the cost of groceries or laundry detergent. However, it was toilet paper that always made me cringe. Was the expensive brand really worth it? What was the big deal about 2-ply? Can I get by only buying a 4-pack or do I need to stock-up?

For some reason, no matter how much I spent at Target on toothpaste, baking soda or Windex, it was the cost of toilet paper that I could not accept. However, eventually I submitted to the fact that TP was as a necessity. Eventually, I stopped cringing. Finally, I agreed that the “good stuff” was worth it.

Health Care is my new Toilet Paper.

I explained to you that, as a retiree, I can keep my current insurance on my group health plan by paying the monthly premium of $517 to Special School District. When I first heard that number, I was appalled! How could one person be expected to pay that for health care each and every month? Then, I continued my research. I called various insurance companies and requested information for private insurance. Immediately, one company told me that I was uninsurable. Another company hesitated, then sent me a detailed application. Upon completion of the application, I was again rejected. Frustrated, I reached out to my PT Facility’s Office Manager and asked for direction. She suggested that I contact her insurance broker. She assured me that, out of all of the insurance companies available, there had to be at least ONE who would accept me and my preexisting condition.

After contacting the broker, I received this email:

Stephanie,
Unfortunately, you would be an automatic decline for individual health insurance, based on your previous medical history. Since you have the option for COBRA after your group coverage ends, you would also not be eligible for the Missouri Health Insurance Pool. I am sorry that I wasn't able to help you! After your COBRA runs out, I would be happy to help you obtain MHIP coverage.
Please let me know if you have any questions.
Thanks,
Ashley

Seriously? I was rejected again – but this time, by THEE agent of all agents. That settled it. Private Insurance is NOT an option for me.

We contacted Gage’s school district, praying that their Group Plan would me more affordable that SSD’s plan. WRONG! His district charges $590.00 per month for spouses.

As I said in my previous blog, Medicare and Medicaid were no longer options, either. Either we were above the poverty line (Thank God!) or we had too much in a savings account or I did not have the “right kind of” disability according to their eligibility requirements.

I then got out my calculator. $517 each month is $6,204 per year. Would I save money by just paying for all of my doctors and appointments out-of-pocket? Since I require weekly PT visits, I started with that office. Because I have such a strong relationship with The Facility, the Office Manager and The President offered me a deal: Instead of the regular $200+ cost per visit, they would offer me a cash discount of $50 for the first 30 minutes and $25 for each additional 15 minutes. My visits are 45 minutes long = $75.00 each week. That is about $375 per month for PT alone. Okay – that is cheaper… Maybe I’ve got something here. Then, I looked at my last doctor’s bill. A 20-minute check-up with my Primary Care Physician costs about $150.00. And, a visit with my Pain Specialist is the same, without the cost of any injections, which are an additional $200 dollars. This does NOT count my prescriptions. For one medication alone, without insurance, the cost is $80.00. I currently am on 5 prescription medications each month. If each cost an average of $80, then that is an additional $400 per month. During a busy month, where I saw each doctor, PT and filled my prescriptions, I would pay a minimum of $1,275.00.

After all of the calculations and options, SSD’s Group Health Plan of $517 per month was starting to look a lot more appealing than venturing out without any insurance at all.

Bottom line, I need health care – and right now, I do not have choices because of my disability. I can pay my district $517 or I can pay Gage’s district $590 each month. Both offer the same options: health care, vision and dental with 60 PT visits and comparable co-payments and deductibles.

Thankfully, God is finding unexpected ways to bless me and the incredible cost of monthly premiums is not as terrifying as was when I first discovered the amount two months ago. I cannot wait to share with you exactly what these blessings are in my next blog – so keep reading!

For now, it looks like as of August 25th, I will be taking over my monthly payments and shelling out over $500 for health care. Health care is about 100 TIMES the amount of toilet paper, but hopefully, one day, I will adjust to this new expense just like, years ago, I came to the realization that you cannot live without TP…