Fake it 'til you make it

Welcome to Friday.  A day of new adventures. Of new experiences.

I had physical therapy this morning.  Slow progress on draining the swelling, but my body is healing bit by bit. Today I was face down for part of our session.  Interesting experience.  I had to put a soft, squishy pillow over my feeding tube so it didn't dig me and the face cradle had to be tipped up high.  Even like that, gravity works and the drool was a bit out of control.  Still, it can be done, which is encouraging.

This afternoon Karissa had to go to the dentist.  This was my first visit back to the office since May. The office staff was very warm and thankful to see me.  The dentist was kind, but more reserved.  I'm sure there is some guilt and/or fear involved.  In all fairness, he always examined me thoroughly and referred me whenever he saw something questionable.  In fact, that last visit he sent me for a biopsy on a lesion on the front part of my tongue.  Asking questions about Karissa's care was difficult because I am hard to understand.  After some trial and error, I did get my questions across and answered.  We need to go back to the orthodontist to figure out Karissa's teeth.  Always something, always something.

Perhaps I came across too hard on medical and dental professionals yesterday.  I must say I have had some amazing doctors.  I have had treatments that could not even have been imagined in the past.  Medical professionals have helped me navigate the barrier that insurance can sometimes be, as well.  It certainly is not that I am not thankful for all of the help and care I have received.  I just stayed with bad doctors/dentists sometimes past my own good judgement.  I did not complain when my care was shoddy.  Even when I left a bad practitioner, I did not make my concerns known.  That was probably a mistake.

No further progress on the purging today. We did get the feeding pumps packed up to go back, so once we get rid of the IV pole, we will have all the medical equipment out of the living room at last.  It might not be a bad idea to keep the IV pole for gravity feeding, but I hesitate to do so because it feels too much like how I ended up with so much other weird stuff in the house.

Speaking of feeding, it continues to be a battleground with Karissa.  I have tried getting her involved in the food preparation process.  I have tried giving her a choice of parts of the meal.  I have really tried to not make this into a power struggle.  However, it is so frustrating!  Food she gladly eats at other people's houses or eats at a restaurant is not acceptable at our house.  Nearly every night we are told that what we are having is yucky and she isn't eating it.  Tonight I left her sit at the table for a very long time.  Finally, I took her plate and dumped the food.  I said if she wasn't going to eat what we were having, she would have an empty tummy for bedtime.  She looked horrified.  After about twenty minutes, she asked me to make her something else.  I told her I would warm up leftovers from dinner, but nothing else.  Suddenly she could eat what we had for dinner just fine.  Why does it have to be a battle royale every night?

The staff at the dentist's office marveled at my good attitude.  Several others have commented that I have an amazing attitude.  That is not true all the time.  There are hard times.  Last night I wanted to take a bite of spaghetti desperately.  Tonight the stir-fry looked so beautiful in the pan, but not nearly as attractive once it was all whirred up. There are times trying to get what I'm saying across makes me feel like banging my head against the wall.  However, all of this is better than being dead.

The other night I was in my fall-back position, guilt.  I feel guilt that I have inflicted this on my family, even though no one in their right mind would volunteer for this.  I was tearfully apologizing to Kelly for ruining our lives.  He said, "No, if you had died, that would have ruined our lives." I need to keep reminding myself of that fact until it is my default setting.

What makes this the most bearable is that it is far easier to experience this myself than to watch someone I love and care about endure it instead.  If there is a 'payback' for this experience, hopefully it will be that those I love will be spared such experiences.  Of course, the number of people I love and care about it pretty high.  I hope for good health and happiness for all of them!

Until tomorrow, hug your loved ones!