It is very frustrating not being able
to do...practically anything. Two things help make that fact a little
more bearable. First, I am not and never have been a stressed or
depressed person. Second, I just don't feel like doing anything most
of the time.
To be totally honest, my condition
really frustrates me at times when I go to church. This is nothing
against Jim or the staff--Jim is doing an excellent job. It is felt
frustration that, "I should be me up there preaching, I should
be up there leading the church, I should up there in charge, but I
cannot because of this terrible disease!" OK, I'm human, very
human. I acknowledge my feelings and am dealing with them. I know
the Lord has a plan and purpose in all of this, I just don't know
what it is. Until then, we keep moving forward doing what we know to
do, trusting God for the future.
Through my book, blog, FaceBook, and
other support websites, I have corresponded with numbers of
individuals from all over the world suffering from Myasthenia Gravis
(MG). Each person faces their unique struggle and challenges, but
always against the common enemy of MG. I hope my own journey
provides strength and encouragement for them as theirs does for me.
It is still a journey through sickness and faith for me and I am sure
learning a lot along the way.
I have learned to adapt to the pain,
tingling, tremors, numbness of the small fiber neuropathy. The
weakness of the Myasthenia Gravis is self-limiting. In other words,
it stops you in your tracks whether you want to stop or not. The
breathing and vision problems still plague me greatly. Not being
able to breath because my lung muscles simply quit working is the
most disabling thing of all. Like it or not, I can cope with all of
these issues.
What I have the most trouble coping
with is known as "emotional liability." As mentioned in
previous posts, I may be developing an additional neurological
condition called Pseudobulbar Affect (emotional liability). In
simple terms, it means I have crying spells for no apparent reason.
I am not depressed or sad, I just have waves of crying flood me four
or five times a week. This is so not me! Each episode usually lasts
from a few seconds to a few minutes--but it seems like an eternity.
A trial of medication to treat this condition almost put me in the
hospital over Christmas because it worsened my MG severely. What I
dislike most about the "crying" is feeling totally
out-of-control. On top of all this, "chemo brain fog" has
set in too.
Cathy has been wonderful in taking care
of me. She drives everywhere we go. She cuts grass, does the yard
and house work (I am thinking about renting her out for chauffeur and
lawn care services). She helps with all my medications and makes
sure that I take care of myself. She can even figure out what I am
trying to say when I can't find the right words to speak because of
the brain fog. She is there for me and I really appreciate and love
her. Kerrell and the girls have also been a blessing and help a lot.
Since January 2011, my medical expenses
have totaled well over $300,000.00. Thank the Lord for good
insurance! I have had: 120 grams of IVIG given over eight days of
infusions, twelve plasma exchanges, numerous pulmonary function
tests, echo cardiograms, sleep studies, EKGs, chest X-rays, a HiRes
CT scan, multiple visits to several physicians, three days in the
hospital, one emergency room visit, five Cytoxan chemotherapy
infusions, and a partridge in a pear tree. I currently take fourteen
prescription medications and have one more Cytoxan infusion scheduled
in January 2012. At that time, my neurologist and I will decide the
next best option, which looks like another six months of
chemotherapy. My current condition is about the same as reported in
my blog of Thursday, September 8, 2011.
Thanks again for all your prayers,
love, encouragement, and support.
From Cathy:
This past year has indeed been a year
for transition. Hard? Yes. Uncertain? Yes. Scared? Yes. I play
the game of "What If," which is not a good game to play.
What if the cars have mechanical problems? What if the couch falls
apart when someone sits down? Who is going to help with the little
things around the house that I can't fix since Kerry hasn't the
strength to fix? This game of "What If" will certainly
drive you to distraction, headaches, and emotional trauma.
I feel the struggle of Kerry's need to
be up there preaching, chairing meetings, developing programs,
working on budgets, directing staff, etc. I feel the displacement of
being in a new situation myself. I am no longer the preacher's wife
and do not have the clout I once had (Laugh Out Loud).
With all that has happened this past
year, I needed to reduce my stress level. So at the end of December,
I resigned my position and will look for one not quite so stressful
(whatever that may be, LOL). I am concerned about my availability to
be with Kerry if and when he needs me. Several times this past year
I had to leave work early and come home because of medical issues. I
have been working full-time for a temp agency and will be placed
somewhere again soon, but I may ask for a part-time, or a very
flexible assignment, that will fit with our needs.
I have ready many devotionals books
which reinforce my belief that God is in control and He has allowed
(not caused) this to happen in our family. Why? Only God knows; it
is one of those Kingdom mysteries maybe to be revealed later. Right
now this is where God has allowed us to be. As I told Kerry, "We
don't understand this and certainly didn't want it, but as hard as it
is on us, we know God has allowed us to go through this and He will
see us through."
Thanks to all of our friends and
family. Your concern and encouragement means a lot.
--Cathy
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