Chapter 3
Week 8
A week ago today, I was in the hospital. Seems that the inflammation is
abating as I had no pain yesterday and last night. I did feel a bit of fullness
and very slight soreness in my spine, mid-back, center. In the afternoon, I
went to the health club with a friend, walked, and sat in the whirlpool.
I still feel a little agoraphobic—almost like I am in rehab after an injury. I
continue to not have much appetite. Good! But last night, unmedicated,
I awoke with a “sprong” feeling in my spine when I turned over. Light
sciatica ran down the tops of both thighs. Woke up twice more with this
sensation, and took two Zanaflex to ensure that I wasn’t tensing my muscles
and distorting my spine. When I got up off my floor pallet, I felt some mild
“disconnect” with my legs and sciatic. Took one Vicodan.
So, from feeling more back to normal and hopeful
yesterday, I am pensive and worried this morning, wheelchairs looming in
my mind. I am reading a wonderful travel book about an American couple who rehab
a presbytery in
Burgundy
.
It is such a wonderful escape. But I am worried that I will not be able to
travel easily. I wonder about being able to teach on Monday nights in the fall.
I am also thinking about how to live the rest of my life with this new entity in
it. Like a new family member. Permanent. How do people cope at my age? I imagine
its not unlike having diabetes or a heart condition or even a mental illness.
What do I tell other people? Do I introduce my condition? We are supposed to
have dinner with friends tomorrow night, and I haven’t even dared to be out at
a restaurant yet. I know I will need to push on through this and not retreat,
hibernate, and withdraw.
As
I sat in my lounger on the deck this morning, I thought about how beautiful the
garden has become. I have spent 15 years tending it to this point and wonder if
I will ever be able to work in it again. Vines intertwining with each other
across the tops of the fence. Shades of green from emerald to chartreuse to deep
aqua. Textures galore—lacy, ribbed, bowing seed heads. A slight breeze rustled
through the oat grass and the grape ivy, reminding me of the reason I love
grasses. They appeal to my senses in many ways--through color, texture movement,
and even sound. No flowers, except the pink shrub roses and the black-eyed
Susan’s that punctuate the plantings along the
north fence. There is one volunteer cleome in the rose garden—sturdy
and white, a reminder of gardens past. I will distract myself with this image
today. Have an MD appointment this afternoon. I do not look forward to it.
Week 9
Had a tearful, panic-filled few hours before my MD appointment on
Thursday. I think my heart was racing due to the medication, but, also, as I
cried on the phone with my husband, I was feeling like an abandoned child...left
in the dust to suffer by the medical field. My husband, of course, provided
comfort and reason. I do have excellent medical care. I can be my own advocate
and ally as I coordinate MD appointments and recommendations. Actually, my
internist was empathetic with me, which was a surprise. We reviewed the
medications I had been prescribed and talked about the next three weeks.
I have remained pain-free and even went out to dinner on Friday and to a wedding
on Saturday evening. Had some stiffness last night and this morning in my arms
and hands and feel disconnected from my legs….MD says that is likely the
medication. But I am sobered. I feel stopped in my
tracks. Preoccupied and
vigilant. Withdrawn. My self-esteem has taken a dive, too. I feel overweight,
middle-aged, unattractive. I wouldn’t’ say depressed, exactly. But I will
need to learn to feel joy and satisfaction about myself and about others and the
world in different ways. In some ways, I feel like an outsider looking in. I see
young people full of energy and am envious. I look at middle-aged women and
wonder if they have any physical limitations or conditions. I am afraid to go
out for a walk, afraid to not have my phone or my medications. It is as though I
am poised for a crisis to reoccur. But I will say that my empathy for people who
face limitations or disabilities is greatly increased. Little did I realize that
coming face to face with my limitations would come at such a price. I have
little motivation for much of anything. But I need to get back to an exercise
plan.
Recently, on a tearful phone call to my parents, they reminded me that both of
my grandmothers had arthritis. My mother also has arthritis in various joints of
her body, including gout. Her mother, the Irish grandmother whom I never knew,
bore 5 children and died of a heart attack at the age of 48 when my
mother, her youngest, was 18 and just married, and
“never complained”. My French-Canadian grandmother, who raised three
children and worked as a nurse’s aide until her retirement, had chronic
“neck problems” and arthritic pain. My father remembers rigging a traction
device over a door in her apartment that helped to stretch her cervical neck
discs apart. My father’s sister also has had chronic and serious cervical neck
problems and has had numbness in her hands for years. I remember her wearing
white cotton gloves to keep her hands warm.
I have had a lot of time to read this summer and fall. Lately, I have
been reading a lot of books about
Ireland
although, sadly, if this condition does not improve, I can’t see how I can
ever travel to
Ireland
,
tromp around to see the sights, and sleep in hotels with uncomfortable beds. I
am rarely far from my nightly warm baths or my gel pack which gets cold in the
freezer in 30 minutes, takes the flame out of sore shoulders, and distracts me
from pain. Or my rice and lavender filled tube sock, sewn at both ends, which
warms to a toasty and comforting 110 degrees in the microwave. Laying the sock
over my shoulders and down my back increases circulation and feels like a
tender, reassuring hand. I love the smell and hold it close to my face
sometimes, like a child. If I travel on a plane, would the attendants agree
prepare these for me in their cabin kitchens? Would the tiny packs that we
tucked into our ski gloves for warmth work if I strung them together and snaked
them across my shoulders and down my back? I can understand how people in pain
become ritualistic as a way to ward off potential flares of pain. I have become
studious and superstitious about my condition. My husband has to pull me from
the internet late at night. It is as though I am on a mission for
salvation…from pain.
Week 12
The past two weeks have been difficult. Ten days ago, my husband and I
went back to the neurosurgeon to set a
date in December for surgery. I will have a myelogram in November so that the
doctor can more precisely view the structure of my cervical spine and where the
nerves might be compromised. “There is a 50-60% chance that you will
experience significant relief. The odds would be better (more like 80-90%) if
you had significant pain or numbness down one or both arms.” After that visit,
I experienced a roller coaster of emotions...from empowerment that I was now
taking an assertive approach in my pain management to acute disappointment that
there may be no clear hope for me and that I would be living this pain-centered
life forever. I cried a lot. I had also begun to cut back on the Neurontin and
Zanaflex because my pain had lessened. My husband has observed that my feelings
are intense when I change medication. He also believes menopause has become
entangled with this whole process for me because I sometimes swing into such
deep depths of despair, sobbing with disappointment, frustration, and pain.
Last Saturday, I felt an
indescribable soreness in my upper back and shoulders and extreme fatigue which
made it difficult to function. However, we had plans with friends to have dinner
and go a movie so I decided to fight
through the fog so that we wouldn’t have to cancel our plans….a regular
occurrence in the last few months. The compromise was to forego dinner with them
because sitting in a restaurant with my neck unsupported has kicked off major
flares of shoulder pain in the past. I made it through the movie with a soft
neck collar that I bought at the pharmacy, fighting through the soreness which
lasted for about 45 minutes at the beginning of the movie and then dissipated. I
was relieved. Sometimes I worry that I have become agoraphobic.
In the last two weeks, I have had two cortisone shots under x-ray, returned to
the physical therapist for ultrasound treatment of my right shoulder for
tightness and inflammation, and have visited a therapeutic massage therapist
twice. I have also scheduled an appointment with an orthopedic back specialist
for a second opinion about my shoulder pain and the upcoming surgery and with a
chiropractor who comes with high recommendations from a meticulous doctor friend
of ours.
On this Sunday morning, I am in some moderate distress, following three pretty
good days which have likely been the result of the cortisone. Last night we had
a dinner party at our home for 17 people for my husband’s 50th
birthday. Because I have been somewhat housebound, getting ready for the party
has been a nice distraction. We had a wonderful time. My husband has been such a
support to me during these months of medical crisis, despite an incredibly
stressful time at work. This party was the least I could do to give him some
much needed attention and to thank him for his steadfast love of me.
I have learned to do lots of things ahead of time just in case I have a flare of
pain that might ruin plans at the last minute, so we were well prepared for the
party before Saturday with help from my mother-in-law and friends. I had a
pain-free day yesterday and low inflammation so, luckily, I functioned well and
had a wonderful time last night.
The pain started up again at about
2am
.
This made sleeping in our bed difficult so I moved to my pallet in the den so
that I could lay flat on my left side and lean my back against a pillow next to
the wall. This arrangement keeps me from moving and shifting too much during the
night, which seems to kick off pain events in my shoulder, disrupting sleep.
Today,
the pain is very localized, starting
at and running over the top of both shoulders (the right much more than the
left) and slightly down my arms between the tops of my biceps and triceps. I
have soreness in the muscles under my right shoulder. Oddly enough, I feel happy
that the pain is only at level 4 or so and has improved with ibuprofen. It also
feels like nerve pain, confirming my resolve that surgery is going to give me
relief because the nerves to the shoulder emanate from between the C5 and C6
vertebrae of the cervical spine. I will wear a collar for much of the day, rest,
and use the cold pack. I will probably spend most of my time sitting on the deck
preparing for the class I teach tomorrow night. Hopefully, the pain will
dissipate, because we have a weekend trip planned in 5 days to see our oldest
son at college. The plane trip is two hours long with an hour in the
Baltimore
airport in between flights. I am frightened and worried that I will have a flare
between now and then, or during the two day activities on campus for Parents’
Weekend.
Was lying out on the deck and had a repeat performance of symptoms a few days
ago-sudden feeling of mild nausea, weakness, like I might pass out. Drank water,
had something to eat. I am so frustrated. Is it a drug side effect (Zanaflex,
Neurontin Ativan) or do I have some kind of blood sugar disorder? I am also
having tremors and what feels like a purring or fluttering in my heart at about
5am
most mornings. I wonder
if it is the drugs or if I am having tremors due to spinal chord compression. It
is scary.
I am just taking 300 mg of the Neurontin, so I think I can just stop
that. Also taking just 4 mg of Zanaflex in am and pm so I should be able to cut
this out shortly. The Ativan is another story. I take about a half milligram a
day if I am particularly distraught or tense or feeling short of breath. I have
been feeling absolutely awful off and on for the past few weeks, so lets
eliminate this poison and go on to the next round of tests to see if I do have
some borderline diabetes or some other crappy thing.
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