Hey
friends!
Here’s an
update from my appointment yesterday!
I'm going
to give you a little background on this pump so you fully understand what I've
been going through the past few months even I would say a year!
Now if
you know me well especially my mother she would tell you that I am NOT someone
that complains about how they are feeling unless I feel like crap.
I was
diagnosed with CP at the age of 2 and that in a wheelchair ever since and use
the Walker until I was 18.
Started
using a motorized wheelchair my senior year of high school because the pain in
my arms was just unbearable.
In
October 2009 I was dealing with headaches in the back of my head it were just
unbearable and spasms in my legs that I've never experienced before.
I tried
and I tried to just deal with the pain with the medicine that I was taking but
it just got too unbearable.
I got
online one day and I started researching different things that could maybe help
my pain.
Now my
mother would also tell you that I'm not a person that likes to take medication
at all and I would rather deal with it with Tylenol or Advil something low key
like that this pain was unbearable and Tylenol and Advil were not helping.
So I was
online and I came across this thing called a baclofen pump.
This pump
looks like a hockey puck and it is placed under the skin of my stomach so from
the outside if you're looking at my stomach you cannot even tell it’s there.
I decided
to have the pump placed now I'm already on baclofen oral pills so I thought it
was a good idea since I'm already on the same medication that way I don't have
to stick another medication into my body which I completely hate doing.
Now with
the pump I have now I've had every complication that you can possibly have with
having a baclofen pump.
The
catheter has moved 3 times so they went in and surgically placed the catheter
so it could not move.
I could
go into details as to what happened when it moves 3 times but I'm not going to
do that because it's not something I want to re-live.
The pump
flipped over so the port is on the bottom and the bottom is on the top which
means I had to go back in for surgery so they could flip it back over. Then they surgically placed it onto my
stomach wall.
I've been
through withdrawals which means I puked on the doctor shoes several times.
Because I
wasn't getting enough medicine it was making me sick.
Now I
guess I have to explain that a little bit more so that you understand.
I am so
sensitive to medication it’s not even funny.
With this
pump if there is not enough medication in the pump I will get sick and if I'm
getting too much medication I will get sick.
And if
the machine is not pumping correctly I will get sick and I have to deal with
spasms and headaches that are just unbearable.
So that
is what I've been dealing with in the past 5 years.
Now I'm
not blaming anything on anyone nor is it anyone's fault.
God
chooses who he gives things to and he just chose me to deal with all this pain
and all these surgeries that I've had since I was 2.
And even
though it's been hard friends I would not have it any other way because this is
who I am and although it sucks at times I love Who I am and I don't think
anyone else could handle it as well as I have.
So yes! In May
before the 28th which is my next pump fill I will need to have surgery again to
have a new pump placed.
I need to
meet with the surgeon first and then I will know what day the surgery will be.
It’s a
huge relief to know that all the pain and all the spasm and all the sleepless
nights that I have had in the past few months is not my imagination all the
pain headaches in spasms are there.
The pump
that I have now is not working correctly and the alarm set I've heard in the
past few weeks are there and it has actually going off.
So my
doctor has decided do not put me through any more tests and just go ahead and
let me meet with the surgeon to have a new pump placed.
Now I
just want to say a big thank you to my family and my friends who have been by
my side for the past 5 years.
I love
you all so very much you just don't know how much!!
Now as I
get set for the surgery as I always say to my mama.
I will
see you when I wake and Mama I will be ok and if I don't wake up that's OK too.
Mama that
just means that it was my time to go so I can watch over all of you and keep
you safe!
If
everything goes as planned I will be in the hospital a few days I would say up
to a week or so. The doctor wants to
make sure the pump is working and NO complications happen before sending me
home!
Misty we
want to give you a fresh start with a new pump and leave the old one behind!
So it'd
be really cool to have some fun craft things to do.
So I'm
not sitting in the hospital bored out of my mind.
Out of
all of this that is what I hate the most sitting in the hospital I hate being
in the hospital where I can't move and do my own thing so if you get to the
store and you see something I might like please send that my way before I leave
so I can take it with me so I have something to do while I'm sitting there
recuperating and when I'm at home healing and getting back to my normal routine.
Okay so
this update is getting very long so I think I'm going to go for now and as soon
as I know more the day and the time I will for sure post it.
I love
you all very much and thank you for being by my side through this road ahead
and I will see you on the other side with my smile on my face as always.
Love Misty
Dawn
