This
friend is not a nice and happy post. This is all about this horrible ugly life
ruining disease called LUPUS.
I
am beyond exhausted and beyond fatigued.
I
can't walk without crying or crumbling in agonizing pain and my life is
shattering right in front of my eyes.
I
could just end the pain I feel and quit. Everything in this life, just give up and
sleep, not eat who does much of that anyways Right? Wither and wilt away.
But I just can’t. My family is my life. My
husband is my world and I just can't give up.
But
tbh today, tonight of all days where I can't hold up my own head, keep my eyes
open, or manage pain to be slightly comfortable. What is the point?
Hell
writing this post is taking everything out of me. But this needs to be said so I am pushing
through.
My
boys are frustrating me more than normal every lil thing they do is irritating me.
I know it's because of these steroids I take
right now.
Right
now I am unable to walk, not just for a long stretch. I mean walk, as in put
pressure on my leg, hold myself up and walk. I can’t do this without collapsing
to the ground shaking, sick to my stomach and uncontrollable tears.
Prednisone,
you are the devil.
I
can't sleep, I am irritable, my body hurts, and I am an emotional wreck.
F-
This disease and all that can't be done. No cure No relief who knows if the
medicines I take now will kill me?
I never believed this could be a death
sentence for me or a normal life.
What
life?
Honestly,
I don't have one. I can't do the things I use too.
I am too exhausted to care.
I
know these feelings will pass and I will overcome these emotions, challenges
and fight yet again another day. But right now it all sucks there is no bright
light at the end of my tunnel, There is no cure for me and I will be in this
pain every day until I die.
That is the truth and no one can tell me any
different. I am not giving up But
I sure just wish to end it all. Every
day is something new and undiagnosed and with every new symptom you learn
something new about yourself that
your strength inside is there hidden in a tiny space and that you can do this. You
have done it! Just yesterday as a matter of fact and the day before that.
The
blank state of staring into space from the immense pain,
That soulless look in your eyes while you are
doing the best to hide your pain and fear, the tears you can't cry because you
know that you will just fall to pieces and will you be able to recover? That is
not what your family needs to see. The stomach aches from eating and or not eating.
Waking up every morning feeling like you have the flu. Not being able to last a
day a min or even second without your body forcing you to sleep. The utter
depression you feel no matter how happy you are it just takes over and consumes
you.
You
have to stop and realize that this is what your family is going through as well.
They are also going through this life each day with you in their own way.
My
husband is my rock through this all he has known what to say to bring me around
every time I have hit rock bottom (which is a lot) He has helped me get the rest I need and always there
for me even when he should be sleeping .
I
am truly blessed and yes I know this. I am grateful for what I can do, what I have,
and who is in this fight with me.
My husband went and did the most amazing thing
a few weeks ago and I have to share,
He is into tattoos and has one well now 2.
He
has always wanted to get my name tattooed on his chest and he did that and so
much more.
I
have always been huge into the Egyptian culture. My next door neighbor growing
up had a bit to do with this as well. She had this necklace in ancient Hieroglyphs
with her name and I wanted one so bad. I thought it was the coolest thing and
so One day in Lonnie’s many travels all over the world for the USMC.
He did just that he got me a real cartouche
with my name.
Made in Egypt by a craftsman he was in a
layover there and had it done. It’s gold with black onyx and spells my name.
I
wear it all the time. Well as his gesture to my name he had my cartouche
tattooed on his chest.
(Now
that is how you add your wife’s name)
He
went one step forward and added the Purple awareness ribbon to his idea. Every time I see this it makes me smile and
push one more min, sec, hour, day harder.
He
is constantly showing it to me on a daily basis sometimes 12 -20 xs’s a day
(LOL)
I
am writing today to let you know it’s okay to have those horrible, angry,
depressed and uncontrollable screaming and crying days, as long as you pick
yourself up, keep fighting, move along to push forward through another day.
I
know you may not feel like you can but take it from me it is a possibility!
If
you ever need anyone to talk too. I am here for you.
As always
Stay strong and Keep fighting
Misty
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