Tuesday, October 29, 2013

stepping out onto a path of peace and confidence

living with multiple sclerosis the next path of medication

of all the things people can say they do not like about facebook
one thing they cannot refute is the outpouring of support you can receive in a short period of time with a reach that surpasses that of any other medium
yesterday i was overwhelmed by the show of care by so many of you
by the press of that infamous ‘like’ button
and particularly your heartfelt comments of love and concern

as i promised
i will talk in more detail about the results from mike’s appointment with his new doctor
this multiple sclerosis specialist with his own multiple sclerosis clinic
as you can imagine there are so many details to the results and how they all interconnect and effect our decision to continue down the road with a new medication
i will attempt to explain the most important parts to the best of my ability and understanding

as i explained to my facebook friends yesterday
to summarize our appointment there was some good news 
and some not-so-great news 
but the good news about the not-so-great news is that there is a plan moving forward to overcome some of it and to monitor the really scary parts
one of the most comforting elements of our visit was my continued feeling of peace about the direction we are headed 
and a confidence in this doctor and his staff and the plan in place

so here’s where the details will come
a lot of technical info so hold tight if this is what you came here to read
if not you can skim or skip to the bottom

so some of the good news
is that despite mike’s blurred double vision and tracking difficulties
his eyes are healthy and the myelin sheath around his optical nerve is still thick
with his vision actually at 20/15
which mike proudly declares is actually a step down from his previous stellar 20/10

some not-so-great news
mike is significantly deficient in vitamin D
an easy fix
mike also has high liver function
something i would have thought was a good thing
they will be monitoring this through follow up testing

some of the scary bits
here’s where it gets a little hard to explain
after much research and listening to the input of countless concerned individuals as i’m sure you can imagine
we have chosen a path with a medication that the doctor and we all feel will be the best hope for mike due to the aggressiveness of his disease and symptoms
it is called tysabri
as i type this i realize that by stating this that some of you familiar with this drug may be concerned and feel the desire to warn us of the dangers of its use
we have been made full aware and are continuing to proceed due to this peace and confidence we have felt
allow me to explain to the others
with this medication your chances increase of getting a rare brain infection that causes death or severe disability 
it is called progressive multifocal leukoencephalopathy (PML)
there are a lot of details regarding this infection but as it applies to mike
before you can take tysabri you are tested for the john cunningham virus (JCV) which exposure to increases your chance of getting PML if you have a weakened immune system, which would include those taking tysabri
this test puts you on a scale of negative and positive and then puts you somewhere along that scale to indicate the risk level of you developing that infection
the scary part comes that mike was placed on the scale on the positive side
at a level they would expect to see after a year of already being on the medication
and with mike's history of horrific reactions to medications
this definitely got our attention

so why would we continue to pursue this medication?
here’s where the peace and confidence come in
as i am sure you guessed we have been praying for years about what path we should take regarding mike’s health
we have felt peace with each decision we have made
although some of the peace has taken longer for me to feel than mike
i am so grateful that we have made these decisions together and with our Heavenly Father so that no matter the outcome we know that we did what was best
why now and not then
why this and not that
this is something i have worked hard to turn off and replace with increased faith and trust
not mike, he never asks why
just what am i to learn

our path has brought us to this point
we have been led down the path piece by piece
and if we can learn from the past we would gather that this will not be the destination but a spot along a path going on further
mike has been blessed by a leader in our church with a long life
a life in which he can see his children grow up and serve missions for our church
all of this
in combination with our discussions with doctor and the possible benefits this medication could bring to him
have brought a peace despite the risk
it is possible that mike will have some of his cognitive abilities return
it is possible that mike will have a decrease in his ongoing severe pain
an increase in energy
ability to sleep 
increase mobility in his legs
visibility problems lessened 
increased balance
the disease will be slowed
a decrease in the number of flare-ups
and a myriad of other possible benefits which cannot be measured or observed from the outside
these are the possibilities
there is hope

as our doctor spoke to us about the risks of taking this medication
he did so with confidence in his ability to closely monitor and reevaluate mike along his journey
he gave us a scheduled plan out 186 months and what tests he would receive at each treatment
he too was very hopeful in the possible benefits this medication could have for mike
of course not making any promises
and making us aware of those who have not received benefits
but also pointing us to a large percentage of his patients who have

so although the risk and fear is there
the peace and confidence outweigh them

we now wait for pre-authorization from our insurance for these treatments
and look into financial aid for this costly medication
we have been reassured that there is help available 
it is our hope that these monthly infusions will begin within the next two weeks before i leave for my next Nerium Bash in Long Beach in mid November
the medication will take four months before it can begin to take effect
at which point we hope the relief and progress will come quickly

this was a long one
and i am humbled that so many of you care enough to read it all
so many of you tell me that you pray for us on a daily basis
and i want you to know that i feel it
i have recently thought that i would like to create a ‘faces of support’ board in which i print out photos of you all and put them up in a place i can see you smiling down upon me during those times of loneliness and discouragement
know that i close my eyes often and see your faces in my mind
i feel of your outreach of love
i feel of your thoughts and prayers
and it makes the world of difference in my life
and the life of my family
oh how i have been blessed by a community of friends and family who constantly lift me and plead out to my Savior on our behalf
i love you friends
i can’t wait for the day of one ginormous group hug


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