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
positivemolecules@sbcglobal.net
tomorrow i'll have my 1000th freaking pain pill since july
and THANKS !!!!! to the Food Angels .
Friday, January 30, 2015
Tuesday, January 13, 2015
Ding !!! really
a few blogs ago i asked for good vibes for the Social Security agency. You guys poured them on . thank you.
i've been waiting for a call from them , hoping for approval, but expecting a denial. Some people messaged me with their horror stories about being denied and then all the appeals. This took months and in one case years. I was not ready for any of that. Most people said to be ready to wait a long time.
friday, i look at my bank account and notice it's more than i thought . I scroll down and see that SSI has deposited $$.. Holy Shit!! Its was after 5 , so i had to wait till monday to call them to see what was up. Well, super fantastic news kids - i 've been approved.
Great for me , but now i'm one of those "suckers leaching off the government". well , that's the way it is.
so this is some happiness for me, !!! yay!!
i know the casual observer might be envious of a guy "who doesn't have to work" , but there was / is a trade-off. i'm very altered, and have a chance of cancer returning. I'm in pain , big time, and it hurts to eat. Imagine eating being the most painful thing you are gonna do. it sucks horribly, and i like to watch the food channels.. bummer
So thanks again for the positive vibes!!! they worked. another miracle for me.
health report :
weight 142
strength 48%
attitude good
pain very high at times
outlook superfantastic
email me direct
positivemolecule@sbcglobal.net
blast from the past ......
go go go go goodby
go go go go goodby
GO GO GO GO GOODBY !!!
Thursday, January 8, 2015
update, cold as hell
Happy new year, lets hope this one is all of our best ones yet. My year of last wont be hard to beat. I did make it , so that's pretty good...
No facebook - it's the way to go.
my health is very slowly returning. i still am low on stamina, i've doubled my walking and bike riding but i still wear out quick. my mental state was getting pretty low, the time line of return to work / out of money was closing in. I'm not near healthy enough to go back to work, and if i do, i get eliminated from possibly getting SS Benefits. I called out to my family for financial help and they did instantly. I am so blessed to have them.
My jaw is not getting better, my face is numb as hell, on the right side. Im not sure if it's just swelling from the jaw repair, or the disease has already come back. That would suck - big time. Today was the last day of the Ensure protein / nutrient drink. That stuff has 20 grams of sugar per bottle X 7 a day, is a shit load of sugar. Im not proud that it took so long to get off that stuff, it took less time to get off the Percocets. I did re-up my pain med script - 4 per day if needed -for the jaw pain. Different things makes the pain spike - the Ensure was one of them, i think there is an anti-sugar spot in my mouth, and if something has sugar in it -- WHAM !!! pain thru the roof. So i'm very happy to be on only real food again, but it hurts pretty bad.
This is week 4 after the SS Benefits appointment, so maybe next week i'll get an answer. Honestly, i do not want to return to work. I'll be one of those "people living off the government", which would be fine with me. The SS fund we all pay into on each paycheck, and i've payed in about $45,000 , so if the government has to pay my way for a few years ( they bet your cancer will return ) , they will still be ahead . I will not be a burden to your $, just what i've payed in. You've seen the Social security lawyer commercials ? When i called the SS office, just to get an appointment, 45 seconds after i hung up , Michael , from the Hensley Group called and gave me the speech you hear on TV. they must have a robot that monitors the phone lines, incredible.
i'm not a fan of cold weather, man am i lucky i get to just stay in. The dog walks are great , they are good therapy, but we don't go if it's near zero out, and these last few days have been way too cold. So Bella's bored , you can only sleep so much -- . I used to tell Bella , i will gladly swap lives with you ( before i got cancer) , as i was leaving for work. She was sometimes grumpy that i had to leave for work and she had to get in her "house".
i miss being ON stage, but not all the other crap involved. the juice from the audience is the best dope ever.
ok here's the health report.
weight 143
strength 47 %
attitude relieved, i was freaking out
pain jaw-when eating can be explosive
outlook positive
i see my dentist next week, and i'll get to see if my jaw is off, or it's my dang imagination
e mail me direct if you want
positivemolecules@sbcglobal.net
stay healthy
No facebook - it's the way to go.
my health is very slowly returning. i still am low on stamina, i've doubled my walking and bike riding but i still wear out quick. my mental state was getting pretty low, the time line of return to work / out of money was closing in. I'm not near healthy enough to go back to work, and if i do, i get eliminated from possibly getting SS Benefits. I called out to my family for financial help and they did instantly. I am so blessed to have them.
My jaw is not getting better, my face is numb as hell, on the right side. Im not sure if it's just swelling from the jaw repair, or the disease has already come back. That would suck - big time. Today was the last day of the Ensure protein / nutrient drink. That stuff has 20 grams of sugar per bottle X 7 a day, is a shit load of sugar. Im not proud that it took so long to get off that stuff, it took less time to get off the Percocets. I did re-up my pain med script - 4 per day if needed -for the jaw pain. Different things makes the pain spike - the Ensure was one of them, i think there is an anti-sugar spot in my mouth, and if something has sugar in it -- WHAM !!! pain thru the roof. So i'm very happy to be on only real food again, but it hurts pretty bad.
This is week 4 after the SS Benefits appointment, so maybe next week i'll get an answer. Honestly, i do not want to return to work. I'll be one of those "people living off the government", which would be fine with me. The SS fund we all pay into on each paycheck, and i've payed in about $45,000 , so if the government has to pay my way for a few years ( they bet your cancer will return ) , they will still be ahead . I will not be a burden to your $, just what i've payed in. You've seen the Social security lawyer commercials ? When i called the SS office, just to get an appointment, 45 seconds after i hung up , Michael , from the Hensley Group called and gave me the speech you hear on TV. they must have a robot that monitors the phone lines, incredible.
i'm not a fan of cold weather, man am i lucky i get to just stay in. The dog walks are great , they are good therapy, but we don't go if it's near zero out, and these last few days have been way too cold. So Bella's bored , you can only sleep so much -- . I used to tell Bella , i will gladly swap lives with you ( before i got cancer) , as i was leaving for work. She was sometimes grumpy that i had to leave for work and she had to get in her "house".
i miss being ON stage, but not all the other crap involved. the juice from the audience is the best dope ever.
ok here's the health report.
weight 143
strength 47 %
attitude relieved, i was freaking out
pain jaw-when eating can be explosive
outlook positive
i see my dentist next week, and i'll get to see if my jaw is off, or it's my dang imagination
e mail me direct if you want
positivemolecules@sbcglobal.net
stay healthy
Wednesday, December 31, 2014
last blog 2014
the end of the year . and what a year it was..
i'm not gonna sign the new agreement for facebook for a couple of weeks. i get TONS of love from my facboogie friends, but it is mostly a time waster. i don't "use it" correctly.
so please subscribe to my blog, most people get it from faceboogie , but i wont be able to put it on there myself.
year end review
weight 144 !
strength 45%
attitude NEW & improved
pain jaw mild to severe
outlook positive , slowly improving
i want to say THANK YOU to all of you , this year was a doosey, and without your help, i would have died. it was close, those tumors were gonna get me. you all really stepped up in many ways, the fund, the constant "well wishes", the 11:11 gang, and good vibes sent have carried me through this very challenging adventure
you can e-mail me direct if you need to contact me
positivemolecules@sbcglobal.net
the main thing i learned during the last few years is that LOVE is the most important thing ... giving it away is #1, receiving LOVE keeps people alive & well. LOVE beats everything.
ok have a great new year,, i'll be OFF faceboogie for two weeks minimum.. i dont know if my account will go dark .
one last time in 2014 --- thank you!!!!!
i'm not gonna sign the new agreement for facebook for a couple of weeks. i get TONS of love from my facboogie friends, but it is mostly a time waster. i don't "use it" correctly.
so please subscribe to my blog, most people get it from faceboogie , but i wont be able to put it on there myself.
year end review
weight 144 !
strength 45%
attitude NEW & improved
pain jaw mild to severe
outlook positive , slowly improving
i want to say THANK YOU to all of you , this year was a doosey, and without your help, i would have died. it was close, those tumors were gonna get me. you all really stepped up in many ways, the fund, the constant "well wishes", the 11:11 gang, and good vibes sent have carried me through this very challenging adventure
you can e-mail me direct if you need to contact me
positivemolecules@sbcglobal.net
the main thing i learned during the last few years is that LOVE is the most important thing ... giving it away is #1, receiving LOVE keeps people alive & well. LOVE beats everything.
ok have a great new year,, i'll be OFF faceboogie for two weeks minimum.. i dont know if my account will go dark .
one last time in 2014 --- thank you!!!!!
Friday, December 12, 2014
positive stuff for sure
just a quick all positive stuff...
and some things i measure..
weight 136 * up from 125.8 on 10-23-14 ..........PLUS 10
how far i can open my mouth 84 playing cards ,
on 10 /23 i could only open 42 cards .............DOUBLE
strength , many measurements ,
last week i was at about 30 % , this week ~ 40 %.......+ 10
i was doing my weights empty handed, i then moved to 3 lbs, now i'm using 5 lbs, ............................................increase !!
i'm at 30 minutes on the bike,and doing stretches at the same time ........................................................increase!!
4 sets of P.T. for both my neck and mouth ......feels great
crunches - used to do 200 / up to 150, from 25 ......... + 125
weaned off the narcotics, from 8 + a day to zero, it took 5 weeks,, the zombie effect is wearing off ............... SUPER !
the feeding tube is removed,, it took 3 seconds, no pain ! now i can get back to my core exercises and gain some muscle weight ........ been waiting for this +++++++
the SS Office sent me a letter saying my application is moving forward. they included more papers to fill out.. so not denied ......................... this is fantastic
started juicing carrots & apples again yesterday , now that my throat works.. i still can't chew, so the VitaMix is making everything into a soup..
the BILLS are coming in, health insurance is covering about 96 % so far, i will have a specific blog about this when they all are in..
no bad events have happened since the operation,,
my skin graft area on my leg is about 75 % completely healed
the skin graft area on my neck is turning the same color as my neck, and the blood crustys are almost all gone
i'm setting realistic daily goals , and getting them done
i went to the movies for the first time in 14 years, the theater had big ass lazyboy chairs, and the movie was entertaining, i was invited out by one of my superfriends.... big fun!
i was able to sell my "too heavy" fender amp, and found the "one" i was wanting all along.. .............Y A Y !!!!
i am staying calm,, not like those annoying t shirts,, yeah stay calm ............ i'm trying to stay positive, you guys are really helping me with this.................. thank you !!!
have a super holiday also
and some things i measure..
weight 136 * up from 125.8 on 10-23-14 ..........PLUS 10
how far i can open my mouth 84 playing cards ,
on 10 /23 i could only open 42 cards .............DOUBLE
strength , many measurements ,
last week i was at about 30 % , this week ~ 40 %.......+ 10
i was doing my weights empty handed, i then moved to 3 lbs, now i'm using 5 lbs, ............................................increase !!
i'm at 30 minutes on the bike,and doing stretches at the same time ........................................................increase!!
4 sets of P.T. for both my neck and mouth ......feels great
crunches - used to do 200 / up to 150, from 25 ......... + 125
weaned off the narcotics, from 8 + a day to zero, it took 5 weeks,, the zombie effect is wearing off ............... SUPER !
the feeding tube is removed,, it took 3 seconds, no pain ! now i can get back to my core exercises and gain some muscle weight ........ been waiting for this +++++++
the SS Office sent me a letter saying my application is moving forward. they included more papers to fill out.. so not denied ......................... this is fantastic
started juicing carrots & apples again yesterday , now that my throat works.. i still can't chew, so the VitaMix is making everything into a soup..
the BILLS are coming in, health insurance is covering about 96 % so far, i will have a specific blog about this when they all are in..
no bad events have happened since the operation,,
my skin graft area on my leg is about 75 % completely healed
the skin graft area on my neck is turning the same color as my neck, and the blood crustys are almost all gone
i'm setting realistic daily goals , and getting them done
i went to the movies for the first time in 14 years, the theater had big ass lazyboy chairs, and the movie was entertaining, i was invited out by one of my superfriends.... big fun!
i was able to sell my "too heavy" fender amp, and found the "one" i was wanting all along.. .............Y A Y !!!!
i am staying calm,, not like those annoying t shirts,, yeah stay calm ............ i'm trying to stay positive, you guys are really helping me with this.................. thank you !!!
have a super holiday also
Wednesday, December 10, 2014
this guy is always asking for something
i know i ask for lots of help, and you wonderful people have all stepped up and kept me alive.
i'm asking for more help. i applied for S.S. benefits on monday.
if you could please send some positive vibes to the social security administration to help me get approved
if you repeat this out loud or just in your mind, i think they will all add up and get me that extra push to approval
here's the mantra
-- social security administration- please approve otto for his disability claim --
i've launched that thought, and if we all add to it , i think it will land in the right place
the gal on monday said she "thought " that i'd be approved,, so we need to push that thought all the way to positively approved
cancer seems to be the magic word,, and i'm not faking it.
it's a fund we all pay into each paycheck, i've been paying 38 years..
ok !!!!!! thanks for helping me again
i'm asking for more help. i applied for S.S. benefits on monday.
if you could please send some positive vibes to the social security administration to help me get approved
if you repeat this out loud or just in your mind, i think they will all add up and get me that extra push to approval
here's the mantra
-- social security administration- please approve otto for his disability claim --
i've launched that thought, and if we all add to it , i think it will land in the right place
the gal on monday said she "thought " that i'd be approved,, so we need to push that thought all the way to positively approved
cancer seems to be the magic word,, and i'm not faking it.
it's a fund we all pay into each paycheck, i've been paying 38 years..
ok !!!!!! thanks for helping me again
Tuesday, December 2, 2014
i found some blogs i started
it's been almost a month, sorry for the absence . i am slowly healing. it's only been 40 days since surgery, and compared to what happened to me , and how i look now it is a miracle. the surgeon did a great job. I've had 3 re-checks, and am healing ahead of schedule..
as a kid , you become friends with your shadow, some kids are scared, i always enjoyed having mine around.. then it got real crazy, the months before surgery..check it out.., i could not get away from the tumor ..
the knob was gruesome,,i can barely remember having it now..
and i've gone from this --
the staples are still in, neck patch still on, to this
neck starting to look normal, almost all the blood crustys have fallen off, and the skin graft is starting to change color like my neck. staples scar is healing really nice, i weigh 131..
i am 4 days into NOT using the feeding tube. after 2 weeks of not using it, i can have it removed. i can't do my "core" exercises with this stuck in me.
my restrictions about mobility and weight lifting have been removed. so now i can get as fit as possible as soon as i can ..
the new challenge is eating.. you take it for granted, just popping something into your mouth and chewing away.. so do I .. what i have started doing is making a bowl of food like i used to,, throw it into the VitaMix, and turn it into a soup.. this takes about 2 hours to eat, and some bites are pain off the chart!! i don't have anything else to do , and this is a "must do" physical therapy. when i left the hospital, i could only open my mouth as wide as 40 playing cards, yesterday i was up to 70, a hard boiled egg is wider than 2 decks of cards, so i've got some work ahead of me.
i wasn't expecting such a painful new deal. before all the pains were from the outside moving in. now , i'm in no real pain until food time.It's inside my face, back by my right jaw.. it can be minimal to 12+ , i don't know , there is one super sensitive spot, and how the food passes over this area can differ from minute to minute. i haven't chewed anything since october 15th, and then didn't swallow anything until october 28th. So now i have to get back to eating 5 big ass bowls of food a day again. this is not gonna be easy. my face nerves are on fire frequently also.. the skin graft area on my leg is doing great.
my only "real job",besides healing, is actually writing this blob,, keeping you all informed.. without you all , i would not be doing this well. My sister set the fund up, and it hit the goal. i am LOVING not working. i have another 6 weeks off if everything gos right. not having to go to work in the winter is really nice.
in the upcoming blobs, i will tell of my hospital stay, and other stuff we haven't talked about.
health report
strength 30 %
pain spikes when eating, jaw is numb
attitude new month, new agenda , A+
weight 132.. i am adding "real" food daily
as a kid , you become friends with your shadow, some kids are scared, i always enjoyed having mine around.. then it got real crazy, the months before surgery..check it out.., i could not get away from the tumor ..
and i've gone from this --
i am 4 days into NOT using the feeding tube. after 2 weeks of not using it, i can have it removed. i can't do my "core" exercises with this stuck in me.
my restrictions about mobility and weight lifting have been removed. so now i can get as fit as possible as soon as i can ..
the new challenge is eating.. you take it for granted, just popping something into your mouth and chewing away.. so do I .. what i have started doing is making a bowl of food like i used to,, throw it into the VitaMix, and turn it into a soup.. this takes about 2 hours to eat, and some bites are pain off the chart!! i don't have anything else to do , and this is a "must do" physical therapy. when i left the hospital, i could only open my mouth as wide as 40 playing cards, yesterday i was up to 70, a hard boiled egg is wider than 2 decks of cards, so i've got some work ahead of me.
i wasn't expecting such a painful new deal. before all the pains were from the outside moving in. now , i'm in no real pain until food time.It's inside my face, back by my right jaw.. it can be minimal to 12+ , i don't know , there is one super sensitive spot, and how the food passes over this area can differ from minute to minute. i haven't chewed anything since october 15th, and then didn't swallow anything until october 28th. So now i have to get back to eating 5 big ass bowls of food a day again. this is not gonna be easy. my face nerves are on fire frequently also.. the skin graft area on my leg is doing great.
my only "real job",besides healing, is actually writing this blob,, keeping you all informed.. without you all , i would not be doing this well. My sister set the fund up, and it hit the goal. i am LOVING not working. i have another 6 weeks off if everything gos right. not having to go to work in the winter is really nice.
in the upcoming blobs, i will tell of my hospital stay, and other stuff we haven't talked about.
health report
strength 30 %
pain spikes when eating, jaw is numb
attitude new month, new agenda , A+
weight 132.. i am adding "real" food daily
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