Sunday, January 31, 2010

I'm tired

I have rarely used this forum for whining or complaining but today is
different cuz I'm tired of a lot of things all at once. Feel free to
skip this rant if you like - there is no medical news of any kind.

I'm really tired of the pain. I'm tired of waking up several times a
night because my hips or back or legs ache. I'm tired of having to get
up and take more pain medication so I can get back to sleep. I'm
tired of hurting so bad in the morning that all I want to do is take
more meds and sit like a cripple. And then when I stand up I'm tired
of wondering if my legs are going to support me.

I'm tired of this flippin' feeding tube! I'm tired of taking all my
nutrition through a hole in my belly. I'm tired of having to crush
pills and flush them through the tube instead of just popping them in
my mouth. Try screwing around with that at 3 in the morning and you'll
know what I mean. Are you thirsty Ken? Here, have some water.
Wrong! All of that goes through the tube also.

I'm really tired of not having a social life since 90% of what we do
somehow involves food. "Want to come over for dinner?" "Want to grab a
burger for lunch?" "Want to stop for a scoop of frozen custard? Oops
forgot you can't!" I'm tired of watching my wife eat frozen microwave
dinners because it's not worth the effort to cook for one, or because
she doesn't want to make any of my favorite dishes. Although I'm sure
some days she appreciates not cooking.

I'm tired of not working. I'm especially tired of getting knocked back
every time I try to do a work project at home. It seems every time I
start something I have another medical issue or I go through a bad
pain period. I hear many people say they would love to not be working
but what I am doing is not exactly a day at the beach! My self worth
has been intricately wrapped in my company for 20 years. Watching the
company struggle along during the most challenging economic times and
having to sit on the sidelines is a feeling I can't quite get over. I
have a great partner and crew and I know I'm no miracle worker but I
also know my contributions would have a positive effect. No one knows
"my baby" like I do! Everyone else is working for the weekend and I
sit here wondering what day of the week it is.

I'm tired of doctors and nurses and pharmacists and appointments and
medical reports and all the other crap associated with hospitals. I
have no fear or phobia about any of that stuff but I never expected my
life to revolve around them. When's my next scan? What are my TSH and
TG levels? Why did they go up since the last test? How big are the
tumors in my spine? Any new ones? Have the old ones in my hips
grown? What follow up do I need for the brain tumors I had zapped
last year? How many more times do I have to have my throat
stretched? I feel like I should have gone to medical school instead
of dropping out and being a life-long gearhead.

I'm REALLY tired of not being able to drive. Most days I actually feel
like I could but then I read another story in the paper about someone
getting killed by a driver whose system is full of prescription
painkillers. Since I'm on 3 different ones that's enough to scare me
back into the passenger seat. I couldn't live with myself if I hurt
someone else because I was being obstinant.

I'm tired of people who have no business doing so asking me personal
questions about my situation. And then when I give them a half-hearted
answer they insist on telling me about their Aunt Thelma who had
surgery "just like yours" to remove a wart from her ass. Gee Thanks,
I feel better knowing I am not the only one suffering. Don't
misunderstand - I certainly appreciate the concern any of you show and
will gladly answer your questions or try to help out your friends or
family members if they are in a similar situation. What I am
complaining about is the people next to me in the checkout line who
notice a scar or see me using my walker and think that is an open
invitation to dig into my medical history. Ignorance is bliss I guess.

I'm tired of reading the on line forums dedicated to thyroid cancer
and reading story after story of people like me who were diagnosed and
then severely mistreated or undertreated because "Thyroid cancer is
the good cancer to have". Nothing like hearing your doctor tell you he
knows how to treat you only to find out later that you should have
sought out a specialist or 2. That would be like me telling someone I
can fix the space shuttle because I can tune up a Chevy. Stupid
arrogance is all it is! Then years later when the cancer magically
reappears the doctor is stunned. "You must be one of the few with an
especially difficult case". No doctor, you were over your head and
didn't know it. And now it is 10 times harder to treat. When will
the medical community realize that even though Thyroid cancer is
treatable IT IS STILL CANCER! Let the folks who have studied it and
are trained to treat it do so. That is why I am so hyped up about
ThyCa and the good they do. Not only issuing grants to study this
disease but also creating ways of getting information out to the
patients and doctors. As patients we shouldn't have to read online
how to properly treat this disease but I learned things I should have
done 15 years too late. Wake up people!

If you made it this far I thank you for bearing with me. I've been
writing this blog for 2-1/2 years and have had a lot of things
building up. I'll try not to make this type of thing a habit.
As always.......
Be Well - Be Blessed!

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