besides cancer, i usually have things "go my way". i've been Mr Lucky since i was a kid.
my operation was a success, i have some permanent alterations to my body, but that's ok with me. my right shoulder is very different than before, but my arm still kinda works. my right hand is normal, but the motions my arm can do are limited. It's hard to do certain movements, but i can still play guitar. I can't use my fat hollowbody, because it wont fit "under my arm", so the Tele is getting all the music for now.
my Jaw is very painful. ouchie!! i wake up at pain level 3 or 4, and it feels like i've been to the dentist everyday. It's like a really bad case of TMJ. my teeth feel like tuning forks that are vibrating. i can open my mouth now 90 playing cards wide, the progress is slow but still improving..
from a distance, you'd think i've got it made... i don't have to work, i get to just stay home and goof off . i wish..
the pain has become a nightmare. i don't like drugs - i've been a drug addict ( always will be ) , but im proud to have kicked many years ago. i'm on year 26 clean, that's something...
now i'm in the pain pill situation which really blows. i needed them when the tumor became painful in July. i needed them after surgery, and was so proud to wean off them in december. It took 5 weeks, i was still in lots of pain, but wasn't taking them. My pain doctor was surprised that i was able to get off them. Then my jaw problems became apparent . I needed to have "some" so i could knock down the pain spikes and rest / relax / sleep.
eating and talking escalates the pain. it's brutal. If i talk for more than 10 minutes, later in the day i'm a basket case. It really hurts to chew, not strength, just the movement. It takes over an hour to eat what used to take 8 minutes. if i'm on enough pills to be pain free - then im a zombie, no pills - and i'm a wreck. where's the happy medium? i asked for 4 per day after weaning off them , so i could have some when needed. The 4 a day wasn't enough. my jaw is screwed. the dentist confirmed that. So i had to go back to 6 a day ( if needed). when the doctor hit 6 in his computer it chimed. He turns to me and says - "they are gonna drug test you"...
drug test me ?? yep. since my amounts went from ( per day ) 2, 4, 6 , 8, 8, 8, 4, then 6 - they want to make sure i am taking them and not selling them.. what a crock of shit... so i'm getting drug tested to MAKE SURE I'M ON DRUGS.. yeah, that's the government... so my next visit i get tested at his office AND another site by the state. Blood tests.. i was hoping to wean off this batch, but forget that. My jaw hurts too much anyway, i need these creepy things.
he said make sure they find nothing else...if they do. i can loose my SS benefits. yeah - oh joy...
another SS deal that's all screwed up is they are scrutinizing my finances. if i have too much $, i loose my SS I benefits ( is it possible to have too much money? ). the magic number is $2000. they think if you have 2 K , you are rich and need no help . even if your expenses are $1400 a month , the 2K is too much. Go over 2000 and you must report it so they can delete their amount. Don't report and you get suspended for 12 months. They want to know if you eat alone or with other people, because sharing food is income. Win a $20 scratch off ticket - you must report that so they can delete that amount. Anybody gives you $ , you must report. ( loans are kind of ok, but don't go over the 2000)
If you sell some of your stuff, like an extra guitar or clothes, that's income and must be reported. If you don't report, they suspend you. How can a person survive without help? Ya can't work because of physical limitations, but you can't get help financially .If ya get suspended , they stop your $$ , and you can't work because that gets you kicked off the system.. They got ya by the balls for sure. Get arrested, your done.
That's what's been on my mind for the last few weeks. You all are so nice to care about me and HELP me like you have, and i don't blog enough to keep you updated. Well it hurts to blog. My face gets all numb typing. Why - i can't figure it out.
i've written a couple blogs and hit the wrong button on this (new to me) laptop and deleted hours of work. Then i'm frustrated as f^%K and give up for a few days - or weeks.
the first batch of feeding tube food had lots of sugar in it.(20 grams per 8 oz) I gained all my weight back (145), but lost some in the last few weeks from the painful eating situation. I did find a different protein drink with only 1 gram of sugar per 11 oz. with 160 calories, and use that in addition to eating as much as i can painfully stand.
ok that's all i can take - you guys are the greatest!!! without your support, love, positive vibes and prayers i would for sure be dead. I like being alive, i don't want to die.
health report :::
weight ................. 133, too low
strength ............... 50%
pain .................... 6 - 10 average
attitude ............... trying hard 2 b +
i'm trying to stay away from faceboogie, but i get too much good loving vibes to completely dump it.
im in the running for NUVO magazine's Best Cover contest. i dont have the link here. my cover date was 10/9/2003 if you go to the magazine, it's in the Best Of NUVO 25 years section. there's a link on my facebook page . you can only vote once.
e-mail me direct if you want
tomorrow i'll have my 1000th freaking pain pill since july
and THANKS !!!!! to the Food Angels .