Clinic

Dear Charlie,

I wish I was writing you from some far off land, in an outdoor cafe, drinking local fire water. sorry to say I'm just in Brooklyn, having out-sized fantasies. my sisters have been here, two, one from Santa Monica and one from forestville, northern California. not being able to be understood well really cuts down on conversation -:) it was maybe more frustrating to see them than wonderful. but here's my big question- how do you like your hospital bed? what do you like and what don't you like about it? 

Really, Peace in the Middle East, and 60. 

Blue Skies

______________________

Dear Blue Skies,

I just had my clinic appointment. It went a little ragged. They all looked a little worried as each one saw me. My doctor told me I didn't seem like my self. He hugged me. So I cried. That sympathy (empathy?) response always makes me ball. The doctor gave me a prescription for anti-depressants and hugged me again. I told him I'd be fine -"it's the weather, the snow has been brutal". He told me I was his only patient not on an anti-depressant.

Part of it's my stomach. I do not like the formula. I changed it today and am looking into making my own. Gas and gurgling, constantly.

I know how you feel about being frustrated around family and friends. I have completely stopped talking. I use the iphone. For me it's fine with one but bad with two.

Today I wheeled down to Soho. Getting out on the Hudson is my daily salvation.

At night I struggle with the vent. And i want to begin night feeds but I'm worried about the alarm going off and not being able to shut it off (since I live alone). Do you have any problems with it?

The hospital bed.

I really use all the different up and down positions to help me stay comfortable. I use a satin bottom sheet which helps me move around. I bought a blanket lifter, a sort of cage that goes over my legs and i put the blanket over that so I can move easily. I use a clapper remote to turn off the lights. I sewed some ties and put them around my knees so i can tug my legs around in bed. (I have an extra pair if you want them). I use the gait on one side to pull myself over so I can sleep on my side. (This is why I have trouble with the vent because I need to sleep on my side).

I adore my old bed. It was the best purchase I ever made in my whole life. After I bought it, I would lie on it at night and not believe my good fortune. But If i were still in that bed, I wouldn't have many options for positions.

The hospital bed mattress is terrible. Card board. There must be away to rectify it, I just haven't had the time to figure it out. ALso, I do not like sleeping in a single.

mine came free from medicare. I can send it back whenever I want to.

I bet you can buy a really nice full size motorized bed with a good mattress with your own money.

It's not bad though. It does make life a little easier.

Oscars were a bore. Charlie Sheen is mental. And the middle east is unglued. Things change.

2011 could be the year that we find cures. So don't forget that.

Peace (60)

Charlie

(my old bed)

Nimbus

Charlie,

I should be mad that it snowed today but the snow in the trees looks so beautiful I can't be. your mother looks so young. she's beautiful. and you have on a cape cod sweatshirt -and goofy, and child like. where did all the years go?


Where do you get your aides from? it seems like ive gone through ten of them. as soon as I get them trained, they leave. is it me -:) yesterday was beautiful. I envisioned you sitting in the park by the water and was jealous. how I wish I lived in manhattan. when the weather gets warmer I'll start going over the Brooklyn bridge again.

- Blue

__________________________

Dear Blue Skies,

I called a strange agency in Brooklyn, last summer. Strange because I think their aides are people who can't get legal employment, illegal immigrants, etc. I never signed anything, they didn't ask me any questions, I gave them my address and Mary showed up. $12 an hour. We've become good friends. She confides in me about her troubled marriage , I gave her an unused iphone. Her nephew just started nights. It's good because as I've lost my speech, she's been here and can understand me better than anyone. When I get Medicaid, I'm hoping to keep her.

After the peg operation, medicare gave me additional aides. And just like with you, they would quit on me. Two men from Ghana (who were great!) A sour black woman who napped and talked on her cell phone (my mother described her as a thug) and two men from Russia. One from Uzbeckistan had such an inscrutable countennance -I texted the agency 'no thank you".

I'm sick of wheeling about my neighborhood but i make sure to get outside every day anyway, even in the cold, cold. Right now, getting outside is my only goal.

I AM WITH YOU ON THE TEDIUM OF THE FEEDINGS!

I can no longer speak words. But, I'm still somewhat idependent. On Thursday, I wheeled to Chelsea and got a haircut at the same barber I've been going to for years.

Oh. My new aide just noticed my haircut and tells me I'm angelic and glowing. Perhaps ALS has given me a nimbus of wholesomeness.

- peace and 60,

Charlie