In
late May 2016, I underwent total knee replacement surgery, and thought my
troubles were just about over. That’s
when life threw me that inevitable curveball that changed the entire course of
my life.
I
anticipated that after recovery and PT, I’d be back enjoying everything I had
been missing because walking had been too difficult: trips to the zoo with
future grandchildren, walks thru the park, in-person Christmas shopping, hiking
thru a parking lot to stand in line for a concert, leisurely trips to the grocery
store (OK – short agonizing ones…my walking and standing ability would change –
not my temperament.) Boy howdy, was I in for a surprise.
I
didn’t expect PT to be a walk in the park but neither did I expect it to be the
start of the most difficult journey of my life. While strengthening and
retraining the muscles surrounding the 20-30 year bionic right knee, my left
leg got weaker to the point that while doing some standing exercises, I would
actually start sinking to the floor. I would come home completely wiped out,
barely able to get up the stairs to lie down. Then my bladder failed me. I don’t
mean the laugh/sneeze accidental squirt all women of a certain age who have
carried a child face. I mean FAILED. I was 65 and wearing Depends. It was humiliating.
Deep
depression set in approximately two months after surgery. Crying jags, total
lack of interest in anything, inability to concentrate, and lost time where I
sat in a chair and the next thing I knew it would be an hour later. The
previous summer, my hands and fingers started getting numb and tingly, which my
previous health care provider attributed to carpel tunnel. (by now I was with a
different practice and never thought to bring it up to my physician.) My new
doc prescribed anxiety and depression meds that summer, but I was too
embarrassed to bring up the incontinence issue, even though she was my doctor,
for pity’s sake. My mental and emotional state was a wreck
Between
Christmas and Thanksgiving, things really started going to hell in a
handbasket. My problems sleeping intensified, I could not control my body
temperature, the “heebie-jeebies” drove me to take more and more anxiety meds,
my left leg started to drag and was difficult to lift even enough to get into a
shoe, falls were frequent and unexplained, vertigo started plaguing me, my
shins became so itchy that I often left deep scratches in them, the toes on my
left foot curled under to become more like claws, making it impossible to stand
long enough to take a quick shower without leaning heavily on the shower
wall. There were times that it felt like
lighting was going down my left leg as it would straighten and spasm for a few
agonizing seconds. Calf, foot, and ankle cramps left me in tears at night. My
energy and give-a-damn left completely, my handwriting began resembling that of
a 15 month old toddler, and on and on and on.
Eventually,
I dictated all these symptoms into my phone’s notes, and made an appointment
with my doctor and handed her the phone. After a complete physical, she watched
me attempt to walk (I could only use a walker by then), and ordered an MRI of
my spine and cervical column. A month later, she went over the results and made
an appointment with a neurosurgeon. A
couple of weeks later, he went over the MRI, checked me over, and told me there
was good news and bad news. The good
news was that there was no injury that needed his surgical services. The bad news was that I needed a neurologist,
and that appointment sometimes took months, but that he would see what strings
he could pull with a colleague. A couple
of weeks later, I saw the neurologist, went thru a battery of office tests, and
he ordered an MRI of my brain.
On
July 17, 2017, I was back in his office and was handed a box of tissues immediately.
I was given the diagnosis…Relapsing/RemittingMultiple Sclerosis. Over time,
something (no one yet knows what) started attacking the myelin surrounding my
nerves. Think of how the rubber coating over an electrical cord can break/wear away,
and how it causes shorts and possible fires.
My nerves, no longer insulated, were misfiring in my brain, telling different
parts of my body to go haywire. Unfortunately, there is no electrical tape for
the nervous system. Damage done cannot be fixed, and all the knowledge and drugs in
the world can only help alleviate symptoms and maybe slow down the degenerating
progression of this auto immune disease. Remember Annette Funicello? It’s the
same disease she had, only before the modern drugs that can help with symptoms.
Teri Garr also is an MS warrior as are Ann Romney, Clay Walker, Walter Williams
(the O’Jays), Richard Pryor, two Osmond brothers, and a host of others.
Since
my diagnosis, I have started on two different oral meds that have helped my
bladder return to normal, and have given me a little more mobility with the left
leg. In August, I was approved for three time a week injections that are
designed to slow the relapses to maybe one or two a year – we won’t know until
another brain scan months down the road shows a decrease in the number of new
lesions.
Meanwhile,
we have decided that since I can no longer get back up fifteen very steep
stairs to the bedrooms (8” risers), I am living on the second floor of the
house. We have turned one of the four bedrooms into a kitchen/sitting room of
sorts, with a dorm size fridge, microwave, toaster oven, and Keurig. We are
having a master suite added to the main level which will allow room for
maneuvering a wheelchair in coming years, if it comes to that
I
am slowly coming to terms with everything, and while I am still overwhelmed
with everything, I am slowly learning this disease, and what I can do to help
myself. The biggest thing so far is to learn to communicate my needs and ask
for help. I’m a mom - I’m supposed to solve and do it all. Everyone is supposed
to depend on me, not the other way around. I have had more than a few talks
with the Man Upstairs, asking for His help and guidance. I have had a few with
Garageman, being honest in how helpless and inadequate I feel.
I
am trying to remember every day that I have not failed, and neither has my
body. God chose me for this life for a reason, and my purpose is to discover why
and do with it what He intends. Meanwhile, I’ll just keep on keeping on, and if
I ever get too morose or whiney, please feel free to call me on it. All in all,
my life is very, very blessed, and I have nothing to bitch about.
