First of all, Luke is doing better today. The highest his temperature has gotten today is 100.1!!! Wesley took such good care of him while I was gone all day long and Anna was gone to class. Wesley is such a good son and brother! Thank you for all of your prayers for Luke!
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My favorite college
team color will always be Duke Blue.
However, I bled State Red blood today as they tried to get my IV started
(there are always multiple attempts due to my lovely, hard to access
veins).
And I was under the Carolina Blue
umbrella of UNC’s Chapel Hill Hospitals when I heard some good news today.
Today was my appointment
to review whether or not I have Multiple Sclerosis.
For 3 years now,
we’ve been monitoring my brain. Rob died
10 months into the 1st year. During
the 1st and 2nd years, there were SO MANY tests. I’ve had at least 10 MRI’s of my brain, my
cervical spine, my thoracic spine, and my lumbar spine. I’ve had a spinal tap. I’ve had eye tests to see if there were
vision changes at the brain level. And
plenty of neurological work-ups by a general neurologist and then the
neurologist at UNC who specializes in MS.
I really like her.
After the 2nd
year, the doctor said I did not need to come back for an entire year.
That appointment was
today.
Following the MRI of
my brain this morning, the doctor delivered the news that everything is the
same – the same 2 to 3 lesions are still there but have not changed at all and
there are no new ones – and nothing else in my brain has changed since 2010.
So we stay the same
for another year…
Not enough to completely rule out MS.
But not enough to diagnose me with it either.
That is good
news! No, that is GREAT NEWS!
So, as I said before,
Duke Blue
will always be my favorite college team color but I was smiling as I walked out
of Chapel Hill's UNC Hospital
Photos from today…from sun-up to sun-down.
This photo is so appropriate for the way I feel today after finding out my good news today that nothing has changed. It reminded me of a Scripture that I love. If you look closely at this photo or at the next photo where I zoomed in on it, you'll see why!
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Isaiah 40:31
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
For those of you who
are new to my life or new to my blog, I’m copying into this post a letter I
wrote to family and friends in November 2010 to explain why MS was suspected to
begin with...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sunday, November 28, 2010
Hi All,
I had thought I would wait until
I found out more information, but since I asked for and received so many
prayers for Rob during this trying time for him and it has been such a blessing
to us, I have decided that I covet your prayers as well. So I am asking that you do the same
for me. I have been told
that there is a high likelihood that I have Multiple Sclerosis. And, of course, I’m hoping and praying
that I don’t.
As I got out of bed on Sunday,
November 14th, I discovered that my left side would not support
me. As I tried to walk, I
basically staggered through the house to go get Rob (he had fallen asleep w/
Luke after Luke had a bad dream in the night). Even though I was very cognizant of my
surroundings and (according to my eyes) I was walking through doorways, I really was stumbling
and falling to the left and hitting
every threshold on the way
from our room to Luke’s. My
equilibrium was so “off.” After
waking Rob and standing there for a couple of moments, it started to subside
but never went away. Thinking
I was just not really awake yet and/or thinking it could be a back related
thing (nerve damage from my lower back issues), I didn’t even mention it to Rob
(after all, it was a Sunday morning
and I certainly try not to add any drama to life BEFORE church). I went back to bed and Rob left for
church during this time. After
getting back up, the weakness was still there but not as intense. From my experience with Daddy’s
mini-stroke, I knew the quick assessment tests about a stroke. My smile looked even, I was having no
problems with slurred speech, I was not having visual problems, and I could
hold out my arms evenly (even though I did notice my left arm felt heavier). And since it was getting better, I continued on with my
normal morning routine but continued to have weakness on my left side. As I started my make-up, I realized
that the numbness extended all the way up to my face. It was feeling heavier, like I’d had
dental work and the shots had not worn off yet – like the top half of my face
(left side only) was sagging over the bottom half. But even so, I went on to church and
for the most part, was okay – except I couldn’t hold the hymnbook with my left
hand and I had to steady myself each time I stood up. After church and a short visit to
someone, I came home and took a nap. After
I slept through Urgent Care’s Sunday hours, I
decided to go to the doctor the next morning. I am a very fast typist and I noticed
later on that day that I was having a hard time typing – my left fingers were
& are sluggish and my left pinky finger keeps “flying away” on me and not
staying on the keys. When I
went to the doctor on Monday, the office sent me straight to the
ER.
I was admitted to the hospital on
Monday, November 15 and discharged on Tuesday, November 16, 2010. I so did not want to spend the night
there – facing the unknown with God alone. Psalm 46:1 has always been a favorite
verse of mine and it was thought of that night often – “God is our refuge
and strength, a very present help in trouble.” God was ENOUGH that night and He will
always be ENOUGH, but having Rob there would have been comforting as
well. However, since we
didn’t want to alarm the children, Rob had gone ahead and taught Bible Study
that evening, he had come to see me after that, and then had gone back home to
the children. Our children are so familiar with Rob being in the hospital for
pneumonia but ending up okay that it really wasn’t a big deal to them for us to
tell them I had to stay in the hospital for some tests the next morning. And I was released in time to get
Wesley to his basketball try-outs the next night so it was pretty much business
as usual as far as the kids were concerned. So here I was, in the hospital alone
with God, thinking about what all could possibly be wrong with me and thinking
about what all I needed to do. It’s
so hard to just stop and be still with so much going on in our lives at that
moment. The last stanza
from Robert Frost’s poem, STOPPING BY WOODS ON A SNOWY EVENING, came to mind
---“The woods are lovely, dark, and deep, But I have promises to keep, And
miles to go before I sleep, And miles to go before I sleep.”
Through MANY tests during those
2 days (CT scan, blood work, EKG, etc.), it was finally determined from an MRI
of my brain that I have “subcortical and deep white matter changes that are
noted to be consistent with chronic ischemia.” In the doctor’s words, there is
significant deterioration of the myelin sheathing of the white matter.
They ruled out a major
stroke. They ruled out lots
of other things. And based
on my symptoms – the most significant one being the weakness on my left side
from head to toe that has not gone away – and based on the MRI they are concerned
that I have Multiple Sclerosis.
The only other neurological
symptom I’ve had is that for the last couple of months, I’ve been saying
opposite words. I will
think and absolutely KNOW that I’m saying “hot” and what comes out is
“cold.” One day, I told my
kids to “Come here right now and DON’T listen.” (They thought it was
funny). I told my dad “No”
to a very serious question one day when I just knew I had said “yes.” Just on Thanksgiving Day, I asked
someone if he was going to cook another ham “recently” instead of “soon.” And the examples just go on and
on. But since we have been
extremely stressed in this house for the last couple of months (thinking my
husband might have lung cancer is just
a bit stressful), I just attributed this weird symptom to stress. The hospital doctors said this may or
may not be related.
I will have my first appointment
with a neurologist on Tuesday, Nov. 30th to begin the process of determining
what definitely has caused / is causing the damage to the white matter in my
brain. From what the
hospital doctors have told me, I may have a spinal tap to help confirm
MS. (I’m going to pretend
that I’m in labor, it’s an epidural, and I’m looking forward to it)!
The damage could end up being
non-specific – which means they may never find out what caused the damage or
why the damage occurred.
The damage could be some other
disease.
But both the ER doctor and the
hospital doctor have told me very bluntly (but nicely) that they think there is
a high likelihood that it is MS.
I am trying to not let this one
break me. There has been a
lot of pain in my life – Osgood Schlatter’s disease in 8th grade (a tendon/muscle disease in my
left knee that I outgrew), arthritis and bulging & hemorrhaged discs
in my back diagnosed 22 years ago that causes 24/7 chronic pain, finding out in
Feb. 2009 why I couldn’t sing anymore (nodules on my vocal chords), and even
going way back to childhood when I was around 3 years old and I distinctly
remember standing on the porch with my Grandma Caviness as we watched my father
drive away. I know from
being told later that Grandma was keeping me b/c my mother was sick at the time
but I completely remember (without having been told) looking up at Grandma and
seeing her looking so sad. I
think it was then that I decided in my 3 year old mind that pain was really bad
but I could choose to not suffer and maybe help those around me not suffer
either. I don’t remember
what I said to my grandmother but I remember trying so hard to come up with
something to make Grandma smile and I remember it working. She smiled, picked me up, and hugged
me tightly as we walked into the house. That’s
my first memory of my Grandma Caviness.
I’m trying to do the same with
this situation. I’m trying
once again to deal with the pain but choose not to suffer. For the most part, I’ve been
successful but there are moments that raw emotion finds its way into my
thoughts. Although MS is
not a death sentence (usually), it is a life sentence – for there is no cure – and
there are varying degrees of severity that could certainly be
life-changing. I know
people with MS and they lead perfectly normal lives between flare-ups and some
who haven’t really had many flare-ups at all. I’m just trying not to worry about
whether or not I have it for sure. I’m
trying not to worry about where the next $40 copay for doctor visits will come
from (together, we have 4 of them just this week) or where money for more
monthly prescription medicine will come from if I need them (we already spend
between $400-600 out of pocket, after insurance on RX for the 3 asthmatics in
our family). I’m trying not
to worry about any of it. I’m
trying not to worry about the fact that my concern for my children has gone
from trying to provide for their needs to wondering whether or not I’ll even be
around and physically able to finish raising them all to adulthood. I’m trying not to worry about how Mama
and Daddy will be taken care of if I’m the one that ends up in the wheelchair.
And for the most part, I’ve not worried – I’m just a little weary. And these are just a few of the
plethora of raw emotions that have surged through my “bad brain matter” over
the last 12 days.
During this season of
Thanksgiving, I have worked really hard to be “INTENTIONALLY” thankful and I AM
so very thankful! I have
been using the phrase “It is what it is” for years. In fact, that’s exactly what I said to
the wonderful nurse who discharged me from the hospital right after the news
was delivered. But that
day, in that moment, I added what my dad is always saying – with new
understanding of what it means. I
said and felt – “It is what it is and I’m thankful it’s as good as it
is.” And then I started
crying again.
Because there was nothing acute
that had to be dealt with as an inpatient right away, the doctors let me go
home the second day. They
knew I wanted to go to Robert Vinson’s funeral and they even okayed the trip to
Ohio Ft. Wayne ,
IN
And we are enveloped in the arms
of God – as always – in good times and bad.
Janna Shelton
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