Politics, Politics… Should I Stay or Should I Go Now?

In my February 17th Blog Entry (Back-Breaking Miracles), I talked about how during my latest PT evaluation, I threw out my back. I rejoiced in the fact that after being bed-ridden for 4 days, I was up and walking and almost back to normal. Almost…

Six weeks later, I was still almost back to normal. Now, as you know, normal to me is not normal to the typical 31-year-old. My normal consists of daily pain, daily medical treatments and extreme limitations regarding any sort of “normal” activity of daily living (aka: things that you do every day without thinking and that cause you no pain).

Six weeks later, I was frustrated. I was in severe pain and it wasn’t getting better. More than that, trouble was brewing at The PT Facility. Six weeks had gone by and every visit, every week, I was given excuse after excuse as to why the Team had not met to review my reevaluation. What was going on? I was told that one week, the Evaluator was on vacation. Another week, my exercise PT had taken off of work. Another week, one of the PTs openly admitted to me that the Team had “started talking about my results, but got distracted…” Another week, my Case Manager was, also, on vacation. I listened to excuse after excuse, nodding my head and accepting the apologies, but what about the pain? There was no excuse for that…

During week six, my Case Manager encouraged me to contact my Pain Management Doctor. When I did, I was asked, “What did the PT evaluation results show?” I wish I could answer that… One thing led to another and I eventually had to contact the PT Facility for answers; answers which were supposed to have been given to me at least a month prior.

If you have read any of my previous entries, you are well aware that I have grown VERY fond of this particular PT Facility and the entourage of PTs and Specialists who work with me on a regular basis. I have tried applying grace and patience to my given situation, for I thought of several of these professionals on a personal, even friendly, level. What happens, then, when one thing leads to another and no one is held accountable for a patient in need?

Before I knew it, my Pain Doctor was requesting necessary information from the PT Facility. The PT Facility looked bad. It looked very bad. I tried to explain to my Pain Doctor the excuses that were given to me by the PT Team, but he asked, “Were they just going to let you remain in pain for over a month without altering your treatment or making changes to help you?” Frankly, I did not have an answer for him. And I also found myself feeling cheated. Why weren’t the PTs making more of an effort? Why didn’t they have the promised Team meeting? Was it acceptable for them to delay such results and treatments?

My Pain Doctor did not think so and he directed me to speak to my liaison, the Office Manager at The Facility. As politely as I could, I explained the situation, specifically that I was concerned regarding the severe pain that I had been in since the reevaluation and the confusion that I saw between the PTs when it came to communication. When I had first started attending The Facility, the Team decided to be a Team – to have a Team Approach – with my Treatment. The President suggested that she conduct every-other-month reevaluations for data-driven treatment purposes and the Vice President then suggested that the Team reconvene within two weeks after the reevaluation to review the data, make appropriate changes to my program and provide necessary information to assisting physicians.

After several months, we decided that neither Gage nor I needed to attend these meetings. The Team could review the data when they had the time, and I could discuss my concerns and thoughts with my Case Manager, who I saw weekly, during our scheduled visits. This plan sounded amazing, didn’t it?

Unfortunately, at the Round Table, when we all had our first Team Meeting, not even the President nor Vice President thought about the non-billable time that it would take to gather anywhere from three to six Team Members together for a non-paid Team meeting…

Does this all boil down to money or what is best for the patient?

Today, when I attended my first visit at The Facility since the stand-off between The Facility and the Pain Doctor, I learned that it came down to the money. My Case Manager was told that the PT President did not “warrant” the need for Team Meetings, because they were un-billable; therefore, unjustified.

Tears in my eyes, I left feeling defeated. My Pain Counselor reminded me that I have a choice: I can leave The PT Facility. I can try to find a new PT or Team of PTs to help. I can find a new Pain Doctor…. I do have choices…

But why do I feel so trapped?

It has taken about two years for me to build the relationship that I have had with the PT Facility. I thoroughly enjoy most of those relationships! Most importantly, for six months, we all saw progress, REAL progress in my recovery. Then, the progress stopped. It reached a “plateau” as they explained it. They "needed the evaluation results to base the next phase of Treatment," they said. They had excuses for waiting to review the reevaluation results – I mean, everyone deserves a vacation, right? Right?

What now?

What would you do?

Would you stay at a place where you have hit the inevitable, political “bump” in the road (it all boils down to money in the end) or would you ask for your chart and go down the street to another PT facility, starting from scratch and praying that it would be different, knowing that every PT has a boss and every boss has a deadline or a budget or a designated number of billable hours in which every PT much fulfill?

Would you stay or would you go?

But You Look Good!

I recently went to the InvisibleDisabilities.org Website and discovered that their slogan reads, “BUT YOU LOOK GOOD!” That is why these disabilities, or illnesses, or conditions are all invisible. From the outside, you cannot see them, but just because you cannot see them does not mean that they do not exist!

As you know, I have been carrying my own Invisible Disability for almost half of my life. When I started writing my blog, several of you came to me and said that you, too, suffer from chronic conditions that greatly affect your lives. When I started asking YOU questions, I learned that those conditions – YOUR conditions - have these names:

Delayed Sleep Syndrome
Seizure Disorder
Meniere’s Disease
Fibromyalgia
Depression
Chronic Fatigue Syndrome
Arthritis
Chronic Pain Syndrome
Anxiety
Osteoporosis
Kienbock’s Disease
Irritable Bowel Syndrome
Migraines
Insomnia
Borderline Personality Disorder
Diabetes
Degenerative Disc Disease
Neofibromatosis (Genetic Tumor Disorder)
And MORE!

These diseases live inside of people who you know. These conditions are carried by your friends, your family members, your spouses, your patients your co-workers, your neighbors and other loved ones whom you see everyday!

According to the survey I sent out (which many of you responded to), these Invisible Diseases affect your lives in many ways, such as:

Loss of Sleep
Constant Fear or Anxiety
Severe Daily Pain
Depressive Thoughts or Tendencies
Feeling Unaccepted by Loved Ones
Loneliness
Worry regarding when the next Episode or Trauma will occur
Loss of Faith
Exhaustion
Decrease in Sex Drive
Fear of Rejection
Inability to Perform Daily Job Functions
Burdened by Continued Treatments
Decrease in Appetite
Infertility
Frequent Changes in Mood
Increase in Appetite (over-eating)
Inability to Perform General Activities of Daily Living
…. And Much, Much MORE!

To give you a greater picture of this epidemic, according to www.depressionperspection.com, a survey conducted in 2009 revealed that, “Approximately 18.8 million American adults, or about 9.5 percent of the U.S. population age 18 and older in a given year, have a depressive disorder,” (2009).

According to an article in Time Magazine, “More than a quarter of Americans suffer daily pain…” (2008).

Think about your life and the people who are in it….

Who do you know who suffers from one of these invisible diseases?

How can you help?

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.

I am the Voice of Chronic Pain - Part Three: How to Help

Just as there are different levels of severity to a disability or condition, there is also a hierarchy of help that can be available to each individual with a chronic condition.

Last year was one of the worst years of my life – of our life. My promise for recovery was broken, so was my spirit. Prior to my surgery, I was physically limited for about eleven months as my back was injured and never healed. I was allowed to be a Newlywed for only three weeks, then the early Joys of Marriage were stolen from me, too. Gage and I were not even living together for a month before my surgery changed both of our lives. We did not know what to expect of my rehabilitation, for everything that doctors foretold of my recovery was wrong (aka, never happened). I was not getting better; however, because I was told that I would be healed and return to work eight weeks after surgery, my employer, my family, my friends – everyone – expected me to recuperate and show improvements. Due to the fact my condition actually regressed, Gage and I were not prepared. We did not know how to ask for help. We did not know who would help us – or how. We did not know what we could ask for from others. We did not even realize what we needed at the greatest time of need in our marriage because we were so consumed with just getting by…

The summer that I injured my back (July 2009), I also was forced to quit my position as a Homebound Instructor for a boy, Bryan O’Hare* who had a chronic illness that prevented him from attending school. I had worked with this boy and his family for years before I developed my own disability and during my time there I constantly noted the intense support that this family received from their family, friends, church, neighborhood, community, hospital staff, strangers and more.

As I stepped into my own disabled life, I was aware of the types of help and support that were offered to the O’Hare family; but, I was unaware of their availability to Gage and me. I had seen the customary Acts of Courtesy & Kindness given to families in need, to grieving persons, to cancer patients, to others immediately after undergoing surgery – you name it! However, I had no idea what would help me – or others with chronic illness. To me, my pain was my life; my restrictions were my new reality; my marriage was structured around my condition and Gage and I thought that that was “normal.”

Countless people have approached me and asked, “What can I do for my friend who has a disability or who is in pain?” The following is a list of Acts of Kindness that I have seen bestowed upon the O’Hare and other families, including my own, that have made a world of difference:

- Laundry Fairy – The O’Hare Family would weekly set baskets of dirty laundry on their front porch and people from their church and community had a rotating system set up so that someone would come, pick up the laundry and return it clean and folded a few days later.

- Dinner Fairy – The O’Hares were also blessed with regular meal drop-offs. My brother-in-law also was blessed with Dinner Fairies when his wife passed away last year. His community set up a Dinner Schedule and we supplied our cooler; his Dinner Fairy would stop by and place the family dinner in the cooler so that when my brother came home from work, dinner was waiting for him and the kids.

- Car-Pooling: For anyone who is restricted in driving (or cannot drive at all), it is such a blessing to have someone else offer to drive them to an event! This is also a huge help for families with multiple children who have a loved one with a condition – it eases the burden of “who will pick up the children from school while I stay home with my sick child?” Additionally, it is helpful when friends offer to meet half-way or to come to our house instead of having us pack up all of my medical devices so that I can be somewhat comfortable in your home.

- House-Cleaning: Before I got married, my mother came to my home once each month and cleaned my house for me. Her help was paramount – my disability restricted me entirely from such simple Activities of Daily Living and her physical act of kindness allowed me to have a home where I felt comfortable and organized.

- Grocery Shopping: Since I am still unable to push a cart full of food, friends have offered to go grocery shopping for me OR to take me, pushing the cart, reaching items on the lower shelf and loading/un-loading the car.

- Running Errands: If you live close to your loved one and are headed to a store, call and ask if there is something that you can pick up for them while you are out – my next-door neighbor, Danielle, did that when she knew I was sick or in severe pain last year and whether I needed something or not, that phone call meant the world!

- Sponsorship: Many people with health problems also have financial problems. Healthcare – even with insurance – costs money! Gage and I have received donations (and offers) from loved ones to help pay for: Physical Therapy, orthopedic shoes, Nutritional Counseling, Acupuncture, Massage Therapy, Prescriptions, etc. Additionally, we have worked with our regular doctor offices and applied for Scholarships. I have received scholarships (that reduced the costs of my co-pays and deductibles) at my PT Facility and with my Pain Counselor; additionally, Gage and I have exchanged work (aka “bartered”) with my Acupuncturist for reduced costs on visits. Last year, we would not have been able to make it without the financial support and scholarships from both our family and those organizations!

- Emotional Support: To me, the most valuable offering I have received from my loved ones has been emotional support. I need those around me to ask, “How are you?” I need people to believe me when I say that I am in pain. It is such a blessing when friends offer me pillows or offer their comfortable chair to me when I walk into a house, acknowledging that I have physical needs and showing me their interest in my comfort and health. What helps us most is having flexible, understanding relationships with others. Unfortunately, we can never 100% commit to an invitation. Ultimately, my disability determines whether or not I (or we) leave the house. I sympathize with the disappointment felt when we have to cancel or decline, but guilt-trips are unnecessary and understanding of our circumstances is what will ultimately keep our relationships strong. My best friend, Melissa, even researched "How to help a person with a disability" and blessed me with many wonderful acts of kindness and encouragement. The fact that she took the time to do such research filled my heart more than words can say!

The above are what I consider Extreme Measures of Provision. One thing to note is that the Laundry Fairy and the Dinner Fairy are quick and often unseen. I know that when I am in extreme pain – enough to keep me from even making myself a bowl of cereal – the last thing that I can handle is small talk at my front door. Most days like that, I cannot even stand to open that door in the first place. If you chose to be someone’s Dinner Fairy, consider setting it up so that it is a simple exchange of the gift. Set aside another time with that family where you can sit down and visit – that is a different type of support all together! For example, after my surgery, my mom set up weekly dates where Gage would stop by her house on his way home from work and she would send him with a meal or two. Also, my dear friend and co-worker, Dina, went to a Catering Company and brought us several frozen meals that greatly helped us on evenings when I tried to work a day and came home unable to move and when Gage had the weight of the world on his shoulders. I admit, it is still very difficult for Gage and I to ask for help – but these particular acts of kindness really made a difference in our life last year!

For Friends and Family of Gage and I, I am trying to push my (and my husband’s) pride aside to express what would help us most during our current stage of Disability:

- PLANNING: If you wish to see us, please send us or extend an invitation with as much notice as possible. Many people assume that since I am not working that I have an open schedule. This is not true! I regularly attend 4 appointments each week, I also complete 2-3 additional independent PT sessions that same week and I typically have a Specialist appointment added to that schedule, averaging up to 8 physical appointments or treatments EACH week – not counting social events already on our calendar and the start of my Vocational Rehabilitation! I am also REQUIRED to rest. And, I am still physically unable to withstand back-to-back social functions. In order for Gage and I to say “yes” to an invite, we need at least a week’s notice so that we can coordinate my appointments with my rest and then find a way to add the fun Social Event to the calendar. As chaotic as it sounds, we are getting very good at coordinating all of these events, but without notice, we usually are forced to say “no” because our lifestyle does not allow for the type of flexibility in which people without a chronic condition are blessed.

- ACCOMMODATIONS: As I mentioned before, I am always touched when my condition is taken into account by others. I often bring my orthopedic cushion with me wherever I go, but the offer of comfort, pillows, a stable/supportive seat, etc. truly helps me feel both physically and emotionally at ease.

- HELP WITH HOSTING: Gage and I often find ourselves in a catch-22 situation. My house is the most comfortable place for me to be; it holds my specialized pillows, my heating pads, my medication, my body wraps, my back brace – all of my essentials. HOWEVER, being the Hostess with the Mostess is difficult when I am in pain and trying to maintain a comfortable position so that I can enjoy my company for as long as possible. Gage and I have found that Easy-Hosting works best for us; ordering food instead of cooking it ourselves, making part of a meal and having our guests offer to bring the other part of it, telling our company that “our home is your home” so that they are comfortable getting their own drinks, silverware, etc., playing Musical Chairs – I often cannot maintain one position for more than 45 minutes, moving from the dining room table to the couch, switching from one place on the sectional to another – you name it, I am a squirmer and if you come into our home, please be aware that I may be all over the place or I may be tucked into a corner and not move all night long!

- WE NEED ENCOURAGEMENT: In all honesty, my disability scares me. I have questioned my faith, I have gone through bouts of depression, I am working through the steps of the grieving process as I face the reality of my condition… AND SO IS GAGE. This was not the life I signed up for and it is not the marriage that Gage thought he was entering. My heart gets light every time someone emails or leaves a comment after they read my blog; happy tears fill my eyes every time I get an Encouragement Card or Care Package in the mail; my loneliness dissipates every time someone close to me calls me after a “big” doctor appointment to see how it went. If you are praying for me, please tell me this! If I come across your mind, please text me! I cannot even put into words how much the support of family and friends lift my spirits and remind me that I AM NOT ALONE… I AM LOVED…

- REMEMBER MY HUSBAND: I say this again and again – My husband and I are one. Gage is disabled as I am disabled. He hurts when I hurt. His heart breaks every time we go to the doctor and receive “bad” news just as deeply as my heart breaks. OUR WORLD is on his shoulders when I am put on bed rest and it becomes his job to take over EVERY aspect of running our household. Gage needs to be loved. He needs his friends and family to call him and ask him how HE is doing. He needs to know that people know what he (we) endure through our life of disability. He feels as if his burdens are lifted when his friends ask him how I am doing; ask GAGE how Gage is doing, too! He feels protected when friends tell him that they are praying for me. PLEASE pray for Gage, too! Above all, recognize that Gage believes in his role as my husband; he does not mean to put others “second” – he wishes to be respected for the sacrifices that he makes when he chooses to care for his wife, not handed a guilt-trip or expected to give explanations for why he has to say no or makes the decision to aid his disabled wife rather than go out with his friends. (Please note, I am speaking for Gage right now based on what I have seen him go through and heard him say over these past three years, if you would like to discuss this with him more, call him…)

Currently, Gage and I are not in the same, terrorized-stage of life we were prior to my current diagnosis of Failed Back Syndrome and to me qualifying for Disability. I can now help Gage with a majority of the household chores and I can attend many social functions with him! Yes, we still have our struggles, but this blog is not a passive attempt at getting someone to clean our house or bring us food (not many know how to cook oil-free, vegetarian meals anyways – LOL!). Gage and I are learning to take care of those things on our own through trial and error and a lot of forgiveness for each other and laughter on both of our parts. If you take anything away from this blog, I encourage you think of ways that you can help your loved one who has a chronic condition and then DO IT! I am never offended when someone asks me what I need – do not be afraid to ask your loved one what he/she needs from you. Also, just as I explained that last year, Gage and I did not know what we needed or how to ask for it, I recommend that if you see a need, act on it without waiting to be asked! Lastly, if you have additional ideas of ways that you have helped others in the past, share them in a Comment on this blog!

I pray that this blog helps you better understand the life and needs of a family with a chronic condition or disability. It may not be your duty to help anyone, but if it is put on your heart, I hope that these suggestions lead you to a place where you can be someone’s Fairy or Blessing.