My letter to Appeal BCBS for my Intercept Procedure. I post it here, because it chronologs my life the past two years, with a quick scan of emotions and family details. I want to remember it, even though I want to forget it. I want my kids to know my heart for them, and my desire for living fully with them. I want to remember the kindness of my husband, his persistence for me, his courage when I had none, and his stamina when I was weak. Still praying for this procedure, and that it helps, but posting this as part of the legacy of these two years, when the highs were very high and the lows were very low.
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June 4, 2022
To Whom It May Concern:
I sit to write to you on a special cushion, that I have been
using for almost two years. While writing this, I will rotate to my knees,
stand at the counter, try a different chair, lay in bed, and then rotate back
to the cushion again. All for one
letter. I’m already in pain after waking
up in the night in pain and its only six am.
I went to bed with Gabapentin, trying to relax the nerves but need to be
moving today to be the mom I need to be for my two children. The weight of our hope for a full future
depends on you, the reviewer of my case.
I am a dedicated wife, loving mom, and friend to many. Ask anyone in my circles and they will tell
you the hinderance that my back pain is to everyone around me. I have canceled plans, winced through dinners
in pain, propped myself up with cushions in church, and avoided most social
events because of my pain. I have missed
out on children’s birthday parties, trips to the zoo, and dinner dates.
The life I was living two years ago, and the life I’m living
now are so different because of my back pain.
I am not the woman I want to be, and the emotional toll of that on
myself and my whole family is massive.
The mental health aspect of my pain is a constant fight for joy and
against depression, fight for hope and against despair, and fight for pretending
I’m okay when I am not. My husband sees
some of this and see the tears and hears the hurt in my voice. He knows the quiet sobs from my room when I
look at photos of who I was before the back pain, while lying in bed feeling
crippled by flaming nerves now instead.
My children have cried countless times at the dinner table, the top of
the stairs, and next to me on my bed because they see my pain and feel so
helpless to help.
And yet, you as the reviewer of my case, have the ability to
help. You have the ability to give my
children back their Mama in my full, capable self. You have the ability to shift my time with
husband from us being always contingent on my back pain, to being able to out
to dinner and movies or shows or activities, and infuse our marriage again with
joy and life. You have the ability to
broaden my social life again and change my relationships with my extended
family and friends and church.
Last June (2021) we were supposed to see my family in
Michigan, a 12-hour drive. I was in
tears the week before because of excruciating spinal pain. We had to cancel that trip. Which means, we had already had to cancel the
Christmas trip (2020), and now another trip, and then because of my inability
to be in the car for any distance, we did not make plans for this past year’s
holidays or this coming year. That
means, because of my pain, my whole family has not seen their family in two
years! That is keeping children from
their grandpa, kids from their cousins, and me from friends and family that
were once home. The physical toll of
this is so painful, but I am sure you can understand the emotional and mental
toll of this, all falling on me, because of my spine.
And yet, you have the ability to change this: reuniting
family, by approving my Intracept Procedure.
If this isn’t enough evidence, then let me continue.
My five-year-old son played basketball and T-ball this
year. The cutest thing ever. And yet my memories of these seasons instead
are haunted by my pain. I tried walking
around the field, laying on blankets wet from rain, standing on one leg, taking
piles of medicines, leaning on my walker, and yet found myself laying in back
of the truck from pain, or not being able to attend at all for weeks at a time
because of the excruciating nerve sensations.
The pain stole my memories with my son and my family.
Another memory that should be sweet but instead leaves me
typing in tears was from last summer (2021).
We had rented a cottage close by and thought it would be relaxing and
beautiful for our family. Instead, I
remember laying on the bed, crying and tears running down my faces, while my
husband and our children were fishing off the dock. Not only was I missing out on this cherished
time, but I was in such pain that I couldn’t even walk down the grass to get to
them. So much for our bonding, there I
lay writhing alone.
Things that are simple for most people are painful for
me. Or if they seem simple at the time,
it agitates my nerves and the next three days I will have to cancel any plans
and call my in-laws to do everything for me.
Here are a few examples – my son’s birthday was special celebration with
just our family. I got my on the floor
to help him open presents, avoided the chair, and went from standing to the
floor , rotating repeatedly… And yet, in sharing his joy by helping him open
gifts, it triggered the nerves so much the next day I was clenching my teeth
and rolling in bed in different positions, trying to relieve the intensity of
the pain, simply from wanting to help my son have a wonderful birthday at home.
This same situation happened at Christmas, simply opening
gifts as a family turns into an ordeal for me – where to sit, how long to try
to stay in that position, how to cover my pain so my kids don’t see… You can’t
even imagine how tainted my experiences are because of my nerves.
And yet, once again, I remind you that you have the ability
to change that by approving the Intracept Procedure.
If all this seems dramatic, trust me, these are only a few
examples. I can highlight a whole bunch
more. We literally canceled our family’s
Disney trip because I couldn’t stand in lines, or make the commute down
there. We tried to drive three hours to
the beach instead, but I laid under my kids feel on 3 cushions and 2 pillows in
order to get there, then found I can’t sit up comfortably next to them or build
castles because I can’t bend over or be in one position more than a few
minutes.
I was a teacher at my children’s school until this
winter. I have a Masters in Education,
and I was working one-on-one with middle school students in a tutoring type
setting, helping these children with reading, writing, organization, etc. And yet, I had to resign from this position
because I couldn’t sit long enough to get through a teaching session. This not only hurt me, but it also spun the
school into the problem of finding a new qualified teacher mid-year, and really
interrupted those students and families who had grown to trust me with their
children and education.
Heart-breaking. Because of my
spinal pain.
My son just had his Kindergarten graduation, and I was an
embarrassment to myself. I wanted to be there for him but it was so
hard to not draw attention to my pain, while letting the students themselves
shine. So I stood, sat, crouched, stood
on one leg, leaned on my husband, everything to get through it. Parents around us were offering other chairs
or positions to see if it could help.
This is horrible, and I wish it could have been different. There are
other school functions like this that I have either missed out on altogether or
winced to make it through and left early – Field Day, Kindergarten Fairy Tale
Ball, Second Grade Easter Party, and the list could go on…. I wish the shadow of my pain wasn’t cast over
this precious time with my son, my daughter, and my memory of these events.
These are the joys of life, but even the mundane is
impossible. The carrying and bending and
twisting to do laundry leaves me incapacitated.
We had to hire a house cleaner because I can’t do any of that anymore. My children’s school doesn’t have buses but
sitting in carpool has me shifting and grimacing, not the way I want to greet
my children, so my in-laws are often called upon to help with that. Interrupting all our family’s lives. People bring us meals because I can’t stand
in the kitchen long enough to cook, or even simply making it out to the grocery
store for days. I struggle if I try to
unload the dishwasher, carry groceries, or sweep the kitchen. I have given up gardening all together, the
weeds over grow what could be flowers.
I walk out of church weekly because I can’t be in the
sitting position long enough to make it through a sermon. I leave lunch times
with friends because I can’t bear it anymore. And I haven’t sat for a whole cup of coffee in
almost 2 years. I’ve finished shopping
at the grocery store, leaning over the cart for support in the check outline,
and having my husband carry me, crying, out of the car back into our home as
the pinching nerve sensation overtakes all my limbs. Gestures of life that are necessary,
important, and pertinent to the functioning of my family, leave me tense,
weeping, and in despair, therefore physically upending my family, as well as
emotionally and mentally.
I have not sat on the couch with my children to read them in
book in 18 months! I can’t sit to watch
a family show, or a movie with my husband.
I can’t sit to read a book and must rotate sitting and standing and
leaning awkwardly to get through meals.
This is ridiculous and honestly, embarrassing.
I’m 39 years old and I own a walker. Two years ago I water skied. All because of my spinal nerves. I want to get back to who I was, not who this
pain has crippled me to be. And yet, you
have the ability to give me my life back, my family back, my friends back.
If this seems extreme, let me tell you, it’s not. And my
desire to fully invest and be part of my family is so strong that I have tried
everything to get better and “fix” it.
I went to a chiropractor twice a week for six months
straight. Only a portion of this was
covered by insurance. Then I went to
Charlotte Neurosurgery and Spine and had an MRI and PT through them, plus had
injections in my back two different times.
When none of this worked, the doctor literally said: “You have a life of
pain ahead of you.”
And yet, the Intracept Procedure is the hope against
that. You get to choose my life of pain,
or life of hope.
I then went for seven months to a Soft Tissue Specialist,
who does not take insurance, Mike Dannenberg at Performance Therapy. I saw him twice a week as well as a Personal
Trainer/Physical Therapist to work through my pain. And yet still, the rollercoaster of the
nerves persisted.
I take Cymbalta; I’ve tried a round of Amoxicillin for modic
changes, done 800mg Ibuprofen with 1000mg Tylenol together, 3 times a day. I’ve tried a million other meds from muscle
relaxers to nerve blockers to intense pain management meds. I’ve been incoherent to my children at times
and forgotten things friends have said simply because I’m dosed on meds trying
to survive. And yet, none of them have
helped. I know where the alcohol is in
my house and fear it becoming a crutch to use to relax the nerves, help me
sleep, or calm down my whole tense system, all fighting the nerve pain.
We went so far as to buy a new mattress, and an entirely new
car! Not exaggerating. It hurt so bad in my Explorer; it was the
worst. We literally tried new vehicles
only based on back support and bought one with 8 different lumbar setting,
simply to see if I can sit in the car long enough to pick up my children from
carpool. It helps a little but doesn’t
fix it. And its brand new, and yet I
still can’t get through the carpool line most days.
I have tried swimming laps to strengthen the muscles, and
water therapy. I have done multiple
rounds of physical therapy, with the most renown of physical therapist! My last PT was Chris Doctor, who is so good
that he has 40 years experiences and trained other PTs and spends half his time
researching spinal therapy. Yet, even he
sent me back to the surgeon to get more help.
I’ve tried laying flat for days, tried walking miles, tried
sitting more, sitting less. Tried
hiking, tried floating. A new cushion
style, a new chair position, new tennis shoes, and not wearing shoes. Literally, I have tried everything. Everything!
Except the Intracept Procedure.
As you can tell from my words, reading my heart and my
story, my spinal pain has hindered my pain and cast gloom on my future. And I live in the current tension of waiting
on you, the one who holds the ability to give me hope, or leave me squandered
and homebound, writhing in pain and canceling another event or saying no to
another book with my children.
This is who I am, and where I am in this journey. I want the hope of sitting on the floor
building Legos with my son, reading next to my daughter, and going on a date
with my husband. I need the hope of volunteering
again in school, using my gifts in the community, and someday being able to
pick up and hold my grandchildren.
You hold the ability to ensure this hope, to bring back dead
dreams, to shine a rainbow on my future.
You hold the ability to approve this Intracept Procedure,
dulling the excruciating spinal nerve pain that flows over into my grimacing
face and spilling tears… or release me to be on the beach with my family, cuddle
on the couch with my children, and be part of our extending family and friends
again.
Please choose this hope for me. Please choose this hope for my husband, my
daughter, my son, my in-laws, our school, our extended family, and our
friends. Please choose hope.
Please approve the Intracept Procedure for me.
Sincerely with all my heart,
Christina Stone
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