Health Care CRISIS

I just spent the last two days on the phone with insurance company after insurance company. My employer has been generous enough to cover my insurance benefits for the last year. This ends on August 31st. After August, I have a decision to make: do I continue to keep my current health care plan, paying a very large amount of money each month, or do I look for a new, individual plan and hope that it is more affordable?

In order to keep my current plan, I have to get approval from the school board to ALLOW me to pay them $517 each month. Yes – I have to pay over $500 a month just to keep the health care that I currently have.

I know that this is the way the cookie crumbles. Nothing is free. Everything has its costs. Health is no exception.

I began my journey towards finding a new, independent insurance company last week. I got a few quotes that were significantly less than my Group Plan; however, there is always a catch. One company said that they would accept me – which I’ll get to that in a minute – however, they will only allow 20 physical therapy visits a year and the PT copay is DOUBLE my current plan’s copay. Last year, my plan covered 60 visits, and I got an extension for 20 ADDITIONAL visits because my pain management required it. If I chose this new plan, I calculated that I would pay $1,200.00 in copays PLUS an additional $4,000.00 out of pocket JUST to get the same number of visits that I received this past year for $900.00. This does not count the $1,000 deductible. That is a total of $6,200.00 CASH for Physical Therapy visits ALONE!

But, I need it. I cannot go a week without physical therapy. I am not a person who can “get by” without health care.

I thought to myself, “There have got to be other options for me!” So I kept searching. One insurance company actually told me that I am “un-insurable.” Because of my (you all know this word, say it with me,) “PRE-EXISTING CONDITION” I am a liability to the company. They refused to cover me.

I could not help myself; I started crying. It felt like they told me that I was not WORTH insuring – as if my health and happiness is not worth their coverage.

I started looking into government healthcare. I researched Medicare, which is supposed to be for people who are under 65 years old and are disabled. That’s me, right? Finally, coverage I can afford! But wait, there’s a catch. There is always the fine print: my household needs to make less money to get more affordable healthcare. Oh wait, there's more! There is the SPEND-DOWN PLAN that the government encourages for "people like me." This plan requires that Gage and I spend every cent in our savings accounts, sell our cars and any property that we can liquidate and then, when we do not have another penny to our name, apply for government assistance. Of course, we must prove that we spent all of our money and sold every one of our belongings first. That makes sense, doesn't it? The government is now ENCOURAGING us to spend rather than save before we can get disability assistance. And, the government expects for my husband, who makes a teacher’s salary and supports his household on one income, to be able to afford independent health care which costs as much as a house payment every month. To me, there is something terribly wrong with this picture!

Gage has said this again and again, “Health Insurance should NOT be a company that is allowed to make a profit.” But, in America, billions of dollars are made each year on peoples’ diseases, cancers, pains, illnesses and even deaths.

To me, that is just WRONG!

Unfortunately, I do not have a choice. I need health care. I cannot afford NOT to spend money on insurance. I am in pain every day of my life. I am certified as a Disabled American. I take up to 12 pills and 5 supplemens a day to manage my condition. Regardless of all that, to me, it is the health care system that is making me sick.

The Dream Team

In January, I decided to see if I could turn my dreams of “one day” being an author into a reality. I sent a simple email to a few friends, asking if they knew of the steps towards publishing a book. Of the five friends I emailed, one man, Brandon, responded, “I happen to be in the business of making dreams come true!”



My friends and neighbors, Brandon and Jen, told me that they wanted to embark on my journey with me. Being a Filmmaker, Creative Director & Designer, Brandon had big ideas for my project and he and Jen wanted to help. Within a month, Gage and I had our first meeting with Brandon. We discussed the book-project as a whole, including: creating my own website, reviewing publishing options, designing marketing strategies and establishing a working timeline. The next step: BEGIN WRITING.



I wanted the book to speak to more than just those who suffer from back pain. Through the blog, I received countless emails, comments and Facebook messages from people who wanted to share their similar stories, too. Not only did I learn about others’ health-scares and situations, but people started asking me questions: How did I know to apply for disability? What types of alternative interventions are there for people who suffer? What is an Invisible Disease? How can I help my loved one who suffers?

I took these questions very seriously. Not only did I address them in my blog, but these questions became a starting point for me to begin independent research for my book. However, my journey wasn’t enough for me. My story did not encompass everything that I wanted to share with the world. I wanted to add your story, too. So, I drafted a survey, asking people to share with me their accounts with chronic conditions. I received more responses than I ever expected! I realized that what I was doing was not just telling my story; I would be telling your story, too. The project transformed from my desire to write a book to actually becoming an Advocate for People with Invisible Diseases.



I started writing. The brainstorming went smoother than expected and within the first few days, I had a solid Table of Contents. Then, the chapters started flowing. I met with Brandon for consultations, photo shoots and website reviews, but I needed to add to the Team. I needed an editor.

If you have ever considered yourself a writer, you understand how vulnerable writing can be. You are opening yourself up to another person, sharing deep thoughts and experiences, revealing parts of yourself in your story. You are also opening yourself up to criticism and you pray that the one reading your work understands the phrase: HANDLE WITH CARE.



Once I had written six solid chapters, I prayed for the right Editors to add to the Team. After careful consideration, I asked two of my closest friends, Stephanie and Melissa, to participate in the project. I knew that, without a doubt, each of these woman were talented, intelligent and capable for the role. I also knew that they understood the emotional responsibility of the task, as well as the analytical components. Without hesitation, the ladies agreed and thus began the next phase of the writing process.



This process takes time. What humbles me the most is the dedication that this Team (Gage, Brandon, Jen, Melissa & "the other" Stephanie) are all devoting to my project. Without them, I’d be just a girl with a disability and a dream…

And here we are. I have nine chapters written and the remaining four outlined and in-progress. I devote several hours each week to writing drafts, editing and researching, and I set additional time aside to consult with my Editors and my Creative Team. We all have timelines in which to work and goals to meet. We all work cohesively and as a team. Together, we are making a dream come alive!



Over these past five months, I have had the absolute pleasure of pursuing my life-long passion. Over the last five months, I have been blessed with an overwhelming amount of support and encouragement from friends and family. Not only do you want me to heal, but you want my dream of writing this book to become a reality. Thank you for believing in me. Thank you to YOU, the loved one who emails me with questions and comments, the friend who sends me “Get Well!” cards in the mail, the buddies who tell me they can’t wait for my book to come out, the people who leave me posts of encouragement & cheer on my Facebook wall, the Survivors who completed my surveys & shared their stories with me – And the people who are reading THIS BLOG. Thank you for being a part of this Dream Team!

You’re writing a book?

How did all of this begin? Those of you know me have remarked, “It’s about time!” when I told you that I was writing a book. About two years ago, I remember my former-college roommate, Jessica, saying to me, “Steph, I miss the way you would write a poem or short story and [make me listen while] you read it to me!”



In grade school, I became obsessed with story-telling. I was always the girl at the slumber parties who got in trouble for keeping the other girls up too late talking. I was always the head-chief at campfires, spear-heading all of the other campfire tales. I “published” my first book when I was in Kindergarten and have piles of journals and notebooks, chronicling my entire elementary and high school careers. By high school, my passion turned into an all-consuming activity. In fact, I was so fanatical about writing that I stopped cheerleading in the middle of my senior year because I wanted to devote more time to my journalism hobbies. By then, I was the Editor of the School Yearbook and on the Newspaper Staff, writing my own, regular column. I contributed to the Marquette Writing Club and I actually looked forward to all of my Honor’s English classes. I even got so carried away with a short-fiction writing assignment that I turned a two-page story into ten and my teacher entered me in a Writing Contest at Stevens College – which I won!



By college, I had my heart set on turning writing into a career. I did not know how “real” authors made any money, so I decided that, given my high school experience, I would be a Journalist. I was accepted into Mizzou’s School of Journalism (then, one of the top three Journalism schools in the nation) and started my studies. The Program was challenging, but I loved it. What I did not love, however, was the structure of journalism. I could not write what I wanted; I had to write what I was told. I could easily create a news-worthy story, but my heart wanted to dive into fiction and, more importantly, to tell a story that would inspire others. Then, a tragedy made me question everything. Early in my college career, a few friends of mine from high school got into a fatal car accident. When I returned to Saint Louis to grieve with my friends, we were attacked by paparazzi who were all trying to get a story. I knew then that I did not want to be the person with the pad of paper, prodding into the lives of others just to get my Big Break. I wanted to help people, not bring them more harm or discomfort. I decided that the best transition would be for me to change majors; however, I never stopped writing.



Whenever I could, I took a writing class at Mizzou. One semester, I was taking both a Women’s Studies and a Poetry class when I learned of a Women’s Studies Scholarship Contest. Without telling anyone, I entered three poems – and I won! Not only did I win the contest, but upon accepting the scholarship, I also had to accept the responsibility of being a Guest Speaker for the Women’s Studies Program. This was when I first realized that I could write the way that I wanted and I could advocate for others at the same time. I was shy about my award, but honored at the same time. I did not picture myself as an Advocate, but all that was about to change. Embracing my role, I spoke at and read my pieces at numerous events led by the department. That contest re-ignited my love affair with story-telling and I once again started to believe that my writing could have a future.

When I started this blog two years ago, I did so because my Pain Counselor, Mark, suggested it. Mark knew that I loved to write, but I was not journaling “as much as I should” given my situation. I had never blogged before, but Mark filled me in on the advantages: I could chronicle my journey with pain-management; I could use the blog as an emotional outlet; and, most importantly, I could inform my family and loved ones about my recovery, progress and diagnoses. When I started the blog, I did not expect for people from all over the globe to read it. I did not anticipate that my passion for writing would open the doors for me to advocate for people who are in chronic pain, like me. I did not realize that there were so many people whose lives were affected by Invisible Diseases, looking for someone to guide them, speak for them and encourage them. But, this happened; it is happening.



When I learned that I would not be returning to work as a Special Education Teacher, I decided to take the blog to the next level. I had experienced such intense and inspiring interactions with Blog Readers that I realized that there is more to the story. And I want to tell it…

Keep reading – there is more to THIS story and I can’t wait to share with you my experiences while writing the book, “Taking Me Back!”

Permanent without a Plan

As you know, recently I learned that my disability was permanent. I have realized that the term “permanent” does and does not have value. For example, because my doctors have told me that my disability is permanent, the Disability Provider agreed to extend my approval for another 12 months. To me that is valuable. Where the label loses its luster is when we look at the future. The next 12 months are “taken care of” as much as they can be given the circumstances. But, what about the future? What about my future? What about Gage’s future? What about OUR future?



Those of you who know me know that I want children – somehow. However, no matter how many times I shake it, the crystal ball does not reveal whether or not the pitter-patter of little ones will ever enter The Dodson hallways. Realistically, I know that I need to be pain-managed for some time before we consider adopting, fostering or re-visiting biologically having children. Realistically, I also know that we need to have some sort of financial security before we also adopt, foster or give birth. The first part (if I can actually learn to manage my pain) is, without a doubt a wait-and-see situation. The latter (whether we are financially capable of providing for children); however, should not be. I am thirty-one years old. I have two degrees, three minors and two teaching certificates that never expire. I am a highly-qualified career woman who is unable to physically hold a career. Because of my disability, I truly do not have a clue as to if I should get excited and hopeful about children, or whether I should grieve the loss and move on…



Those of you who know me also know that I really want to move into a house. Don’t get me wrong, I love where I live. My two-family-flat is beyond adorable. I have lived here long enough that every wall has the perfect picture and every piece of furniture fits nicely in its own space. I adore my neighbors. I love the location. I am a South City gal all the way! Realistically, there is not a rush to move until we make the decision about to have or to not have children. Realistically, our current home houses enough space for Gage, Lady and I. However, the largest thing holding us back is that we cannot move forward in purchasing a house until we can apply for a loan and actually have the answer to the question: What is your annual household income? In 12 months, I may not have Disability Provision. In 12 months, we may not be able to afford a house at all. Or, we could, and we would have waited these 12 months to house-hunt for nothing…



I was talking to a good friend, celebrating the good news about the Disability Approval when I also realized its trap. I already spend hours and hours each week attending doctor appointments, completing evaluations and filling out “continuing approval” paperwork. Just today, one of the key medications that have helped me towards this “pain-managing” journey was almost NOT approved by my Insurance Company. After two phone calls yesterday and FOUR calls today, I finally got it approved. But was all that really necessary? The Disability Provider also keeps demanding that I contact the Social Security Office to see if, even though I have been a teacher all of my adult career-life (therefore, I have NEVER paid into social security), SS will supply some supplemental income (then The Disability Provider can provide me less money - Good for them, right?). Because I am an honest woman, I am on the hunt for this information from SS. I also am applying for Medicaid and researching independent insurance companies, applying for those as I find them. With all of these daily have-tos, it is as if I have a full-time job being on Disability!



While I do not deny that getting the 12-month extension and approval for Disability has been a huge blessing and relief, today as I sat on the phone for over sixty minutes with one call, I realized that this gift came with a price. I wish I could just close my eyes, shake my crystal ball and see my new home with my babies. I wish I knew if either of these dreams will ever be my reality. I wish upon a star that this June was next June so that I could start the real first day of the rest of my life. Until then, I know that I will do what I can to enjoy these next 12 months. I will work on my book. I will continue to write my blog. I will soon enough figure out my health insurance for August and the Social Security question. I will soon enough be approved or denied for Medicaid. And, if I am patient, one day I will own a house. One day I will either be a mother, or a really good aunt. Until then, I’ll keep juggling this crystal ball…

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.