Wednesday, January 4, 2012

LEARNING TO EAT AGAIN - NOT EASY

Learning to eat again

SPECIAL NEEDS:
(1)  Glucerna snack drinks (need three a day, way too expenses at $3 a drink)
(2)  Diapers, size 5-6, boy, day and night time
(3)  Boys panties, size 3-4 years. Potty training is slowly moving forward
(4) High calorie, no bulk, non dairy, non carbonated beverage

Just to make sure everything is clear.  I received cancer surgery.  THIS IS NOT A CURE.  This is merely an extension on the short life span I was offered.  Instead of 2-4 months to live I now may have 2 years or more.  It just depends on when the cancer returns.

Struggling with the new menu for people with only one-third of a stomach and little to no esophagus.  Most people may not have a problem but our limited budget and inability to choose foods is a problem.  My NO foods are bulky foods (cereal, fresh veggies, fresh fruits, beans), no breads, no dairy products, no high sugar, no carbonated drinks, no stringy foods, no steaks, no spicy foods, no popcorn, no fried foods, no nuts.  On food bank foods there’s not much eat.  I had tortillas this week, mash potatoes and gravy, hummus spread, some small hamburger patties (wee chewed to pulp), Glucerna drinks, teas.  That’s it.  Now in addition to this, no smoothies.  I’ve been drinking lemonade Koolaid for something tart, sweet teas, hot teas but that’s about it.  I need to maintain 1800 calories a day and it’s just not happening.  Plus the nutrients have a lot less space to travel in order to absorb them which is bad.

I have a J-tube in my stomach, which is sore around the opening all the time preventing sleep on the stomach or right side.  It can be hooked up to a nutrient bag. Nutrient bags are very expensive and are not covered by the system.  So it’s more of “a beg” for almost out-of-date ones and hope I don’t get sick from them.  I’m so burned out on begging.  Finding enough food to cover 1800 caories with out being able to use dozens of disallowed foods is just not working.

On top of all else, I was helping cut up cheeses and sausage from a Pepperidge Farm gift for dinner and cut my left hand forefinger to the bone across the knuckle.  Now that’s bandaged up with a Popsicle stick.  Probably needs stitches but I can’t afford it so the stick and tied on cloth with half to work.

To top this disaster of a day off:  I had my first primary health visit with a County Doctor.  You cannot make an appointment by phone.  You have to drive in in-person.  If you mention no one answers the phones, you get waved off.  I had to wait a month to get the appointment.  We showed up 15 minutes early for paperwork.  Waited an hour and we were finally called back.  When we arrive in the back, more paperwork, and then we are told our doctor left yesterday for two weeks away.  So now we have no appointment and they will squeeze us in.  We’ve been here two hours now and I ask how much longer “squeezed in?”  I was told a long while.  There were over 50 people in the waiting room 2/3rds were walk-ins.  We were told that now we were in the walk in category.  I said screw it, and walked out.  I’m just out of surgery and can’t sit for five hours in a waiting room. I instead opted to set an appointment with my oncologist.  On the way out we were discussing this and a woman interrupted us.  She said she was told the same thing but had a different doctor.  Her opinion was the clinic does this on a routine schedule just to get the people to walk out and open up more walk in appointments.

I may have had my surgery.  I may still be here for a while longer, but life gets more and more sucky by the moment.  I get the same crappy life, only now I get pain daily on top of it and still have the opportunity to starve to death.