We’ve all read Dr. Suess’ book, “Oh, the places you’ll go,” right? Well, unfortunately, this year, Gage and I have started to take inventory of ALL of the places we have been unable to journey, due to my physical condition…
To bring the crowd up to speed, I have now received the official classification of Failed Back Syndrome. I am not sure what this means, I just know that it is the label placed under the Diagnosis portion of my Long Term Disability paperwork completed by my Medical Team last month when we finished the first round of forms (in which we are still waiting approval).
Failed Back Syndrome does not mean that I am still not a Chronic Pain Patient. It does not mean that my Scoliosis has been cured, that my pelvis is now even, that my Degenerative Disc Disease has disappeared, that my legs are now the same lengths or that my left hip is not still sprained… It is merely the new-and-improved brand to my ever-regressing body.
Months ago, Dr. Mark (my Biodfeedback Specialist and Pain Counselor) expressed to me the urgency of grieving all that I have to, for now, let go. Dr. Mark required me to live in the NOW. He wanted – he still wants – for me to have hope in the future, but to not set myself up for disappointment by expecting things of myself or my body that is absolutely, physically impossible. What is on the Don’t Do List?
Oh, Steph, Don’t Go THERE… I cannot:
- Bend or lean forward beyond a 30-degree angle
- Push, pull, carry or lift anything weighing more than 5-10 lbs
- Sit for more than 30 minutes
- Stand for more than 30 minutes
- Go up or down stairs
- Walk, run, jog, or ride a bike
- Exercise (beyond the few PT exercises and stretches allowed)
- When I am sitting, I must have lumbar support, arm/side-support, a cushion under my bottom and a foot stool because my knees are to be at an angle higher than my hips; when necessary, I am only to cross my right leg over my left and I am NOT to lean-in to one side of the chair or the other.
- When standing, I must wear certified tennis shoes with a heal-lift in my left leg; when available, I can lean on a wall for support; however, I cannot lean forward, for that will negate the “do not bend forward” rule.
- When lying down, I must have a pillow under my neck, support pillows (or sensory input materials) on both sides of my body, a pillow under my knees when lying on my back or a pillow between my legs and under the curve of my side while lying on my back; additionally, I was told that I’d “be better off sleeping with a knife in my chest than laying on my belly” at night. Hmmm….
- If I must climb a stairwell, I have to use the handrail and absolutely NO skipping of steps (duh!).
- I cannot go even 1 day without PT – I can receive such therapy from either my Specialist or my husband, whom has attended several therapy sessions and whom my Physical Therapists have taught to manipulate my body “enough” to get me to the next session.
- Close your eyes folks, because I even have a pamphlet of how to “be” with my husband without breaking any of the above or doctor’s prescribed rules.
- If I must walk, it needs be on smooth land, preferably pavement or concrete.
- I must stay-in and rest on a work-night, no exceptions.
- My body requires hours and hours of sleep each night.
- I am required to spend my FMLA days seeking relaxation, NOT finishing up school paperwork, picking up the house, helping with dinner or doing the dishes.
- Traveling has not yet been an option.
- If I do attend a social function – or leave the house – I must continue to adhere to my rules, regardless of the place or people and my aptitude usually expires after about only four hours (upon which I turn into a pumpkin and must be carried home before I break more than my glass slipper).
How is one supposed to survive under such critical stipulations? In my case, I have had to learn to say no…
This year, I Just-Said-No to:
- My 30th Birthday was the first year I was unable to see my parents on the actual day I was born because it was my first day back to work and I was in so much pain we had to cancel my big birthday dinner.
- Gage and I had to stop attending church every week because the sitting in a two-hour service was too difficult on my disabled and rule-bound body.
- My doctor restricted me to a 3-day work week, and would have decreased it even more if it were possible to do so without the fear of me losing my job.
- We could not travel to North Carolina this New Year’s Eve to visit my in-laws, as per our new tradition.
- I did not see my mother on Mother’s Day because my doctor told me that it was too dangerous for me to attend a parade.
- I had to stop meeting with my Women’s Group and my Accountability Partner on a regular, scheduled basis because my body grew too tired to keep up with any sort of an after-work life.
- I could not attend my best friend’s Winery Birthday Bash because the location was about an hour away and that was considered “traveling.”
- Spontaneous plans are not an option, for there is too much prep-work involved in getting my body ready for even just a short visit with friends.
- We made it to one nephew’s baptism but couldn’t stay for the brunch; we had to miss another nephew’s baptism but made it to the after-party.
- I missed my dear friend’s wedding last August because my doctor did not release me to travel so soon after surgery.
- I have missed the Turner Annual Float Trip three years in a row.
- I have missed seeing my family on almost every one of their actual Birthday’s (per custom) this year because each date happened to fall on a weeknight.
- I could not attend a former student’s (and someone very, very dear to my heart) funeral because I was in too much pain after attending the visitation the day before.
- Gage and I had to start saying “no” to Sunday Dinner at the Dodson’s.
- I gave up my ticket to the Fox Theatre last December because I was not able to sit for that long in those theatre seats.
- Gage and I had to miss Christmas Day with our families because I “over-did-it” hosting Christmas Eve at our house the night before.
- I was unable to travel to my Nona and Papa’s house for their Holiday at the Lake party.
- Date-Night at the Dodson House actually means Blockbuster and take-out, served on the couch and in pajamas.
- We stopped going to the movies unless it was an afternoon show (aka vacant) where I could bring a pillow and literally lay across a row of seats.
- The list is endless…. Baby showers, game-nights with friends, coffee with the girls, shopping with my sister, annual winery trips, graduation parties, birthday parties, double-dates… I’ve missed them all…
- This year, I have sat at home, alone, many-a-nights while my husband attended house-warming parties, Birthday gatherings, Men’s Group Meetings and family dinners without me because these events fell on my “no” nights…
I am not a woman who comes from a place of NO… However, to protect my body, I have had to adhere to these stern restrictions. What happens if I “break” one of the rules? PAIN. STOMACH-CHURNING, GUT-WRENCHING, BODY-THROBBING, TAKE-ME-TO-THE-HOSPITAL PAIN…
Unfortunately, not everyone in my life has been understanding of my limitations. Some people are in denial. Some do not grasp the magnitude of my situation. Some prefer to pressure their own agendas, perhaps to see if I can be swayed or even, dare I say, bullied into committing to an attendance even though my doctors have advised otherwise…
Recently, someone close to us expressed to Gage, who regretfully denied an invitation on our behalf, that he was “enabling” me. Merriam-Webster’s Dictionary defines enabling as “to make possible, practical, or easy,” (2011). Looking at this definition, one could assume that this person meant that Gage was trying to make my currently, physically-limited life less, well… limited. One could suppose that this person wanted Gage to allow his wife to live a somewhat-capable life even though her body was constricted. One could even presume that this person admired Gage’s commitment to the “for better or worse” part of his vows and respected Gage’s selflessness in such an inconvenient and suppressed situation. This person, however, did not describe Gage in such an endearing way…
To honor both my husband and the person whom claimed Gage to be my Enabler, I immediately discussed the accusation with two of the Specialists on my Medical Team. I had never thought myself one to take advantage of others, nor had I believed myself to hibernate from a social life. However, hoping that that charge against my husband came from a place of love, I investigated its claim with those who have been working both with me and on my body for the past seven months.
Upon hearing my concern, my primary doctor replied, “The attitude expressed by that person is one that I have to deal with on a regular basis,” she began, “As I said, this is an attitude – one in which many, many people have toward patients and people with chronic pain…. The issues here are complex and difficult. It is sadly common for health care providers (and others) to discount pain, and even more common to discount chronic pain.
By definition, chronic pain is that which has outlived its usefulness as a signal of tissue damage. Chronicity creates more pain and actually changes the physical structure of the ascending pain pathways which alters the endogenous pain modulation system (the system that helps you manage your own pain). Unfortunately, currently, we are not smart enough to measure this, so even more unfortunately, many physicians think that if they do not know what the source of the pain is, that it must not actually exist.
This is a problem with the limitations of medicine. Then, if you cannot measure it, and you cannot effectively treat it, it becomes much easier to deny its existence or to "blame the patient" which is what it sounds like the person in your life is doing.
There are a number of studies about this. One found that the higher the pain-scale rating the patient reports, the less likely they are to be believed, and the higher you go on the medical 'food chain’ (surgeon versus therapist) the less likely the patient is to be believed, even in light of a known, extremely painful condition (this is why cancer pain is so under-treated). This makes it very difficult for other-treating professionals (like physical therapists or other specialists) to effectively treat patients – and it is devastating for the sufferer. Furthermore, it is unfortunately not uncommon for those that are trying to support the patient to be labeled Enablers,” the doctor explained to Gage and I.
When I then asked my doctor what the most appropriate reaction to such an accusation would be, she explained, “What might be more helpful to you is to deal with the reality of this; to do so, you are going to have to find those who are supportive and to try not to expect much out of those who are, for some reason, not. I understand that this is not fair – and is very difficult – but it is the sad reality. I wish that I could offer you something more helpful, but my experience with this is consistent. My job is to help you as much as I am able, to help you get your needs met within a sometimes hostile medical environment.... this is why I want you to write about your experience. The system is very broken, to the detriment of decent patient care…”
Even though Gage and I were validated by my brutally honest Team of Medical Advisors, our hearts still ached… There is someone, possibly more people, in our lives who do not only understand the physical pain in which I endure every day, but who deny its existence and; therefore, disagree with the way in which Gage and I are advised to manage our circumstances.
Gage, my beloved husband, lives with me daily and only understands pieces of my pain; however, he never denies its existence nor does he deny me help, patience or kindness. As a Christian woman, I have learned that I cannot make others believe in God as I do – for that takes individual faith that only comes from the Lord and from within. I just wonder what it will take for those important people who are in our lives to believe in Gage and I enough to not just walk away from us during this desperate time of need, but to stand by our side through it all…
