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Hi my name is , I usually don't post that often, but I think I'll be doing

it more often even do I'm very shy. I apply for SS and they denied my benefits,

so I'm going to appeal. Do you believe my doctors said that I could lift weight

up to 50 pounds, that's crazy! If I'm bromine or moping my arms start hurting

allot imagine lifting up all that weight. So I'm really upset. With my health

I'm sore of my legs and really tire. I have appointment with my reumatologist

until December. I don't know if he is going to start me in a new medication.

What I'm starting to have is allot of allergy in may face, and sometimes I feel

like my face is burning. Hopefully it goes away when I wash my face and

lubricated. But sometimes I feel my face so super dry, I don't know if this

happens to any one else, and what do you do about it. Well good to have post

thank you. 

________________________________

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>

> Hi my name is , I usually don't post that often, but I think

I'll be doing it more often even do I'm very shy. I apply for SS and

they denied my benefits, so I'm going to appeal. Do you believe my

doctors said that I could lift weight up to 50 pounds, that's crazy! If

I'm bromine or moping my arms start hurting allot imagine lifting up all

that weight. So I'm really upset. With my health I'm sore of my legs and

really tire. I have appointment with my reumatologist until December. I

don't know if he is going to start me in a new medication. What I'm

starting to have is allot of allergy in may face, and sometimes I feel

like my face is burning. Hopefully it goes away when I wash my face and

lubricated. But sometimes I feel my face so super dry, I don't know if

this happens to any one else, and what do you do about it. Well good to

have post thank you.

>

>

> Hi , i don't post hardly ever myself. But in reply to your

situation, i recently applied for ss disability myself. I used Allsup,

you can google them to find out if you want to use them. They manage

just about everything & are trained in how to phrase your situation to

benefit you. I know i can't handle the stress of everything they need to

prove what i need. Also, i have had a rash everywhere but my face. The

dermatologist did testing on me & still isn't sure what it is. But i

itch all the time, so he gave me hydroxyzine pills (they help the

itching) & i have to bathe with cetaphil & wash clothes in detergent

without dyes or perfumes. He also gave me some ointment that's like

smearing really thick vaseline verywhere to rub off on my clothes &

linens (yuck). I get small patches that they cut a plug out of me to see

what they are, those burn like they're on fire & when they heal they

leave a hard dark spot (those i have all over my chest & mid section) .

Long story around i know what your going through.

> ________________________________

>

>

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Share on other sites

>

> Hi my name is , I usually don't post that often, but I think

I'll be doing it more often even do I'm very shy. I apply for SS and

they denied my benefits, so I'm going to appeal. Do you believe my

doctors said that I could lift weight up to 50 pounds, that's crazy! If

I'm bromine or moping my arms start hurting allot imagine lifting up all

that weight. So I'm really upset. With my health I'm sore of my legs and

really tire. I have appointment with my reumatologist until December. I

don't know if he is going to start me in a new medication. What I'm

starting to have is allot of allergy in may face, and sometimes I feel

like my face is burning. Hopefully it goes away when I wash my face and

lubricated. But sometimes I feel my face so super dry, I don't know if

this happens to any one else, and what do you do about it. Well good to

have post thank you.

>

>

> Hi , i don't post hardly ever myself. But in reply to your

situation, i recently applied for ss disability myself. I used Allsup,

you can google them to find out if you want to use them. They manage

just about everything & are trained in how to phrase your situation to

benefit you. I know i can't handle the stress of everything they need to

prove what i need. Also, i have had a rash everywhere but my face. The

dermatologist did testing on me & still isn't sure what it is. But i

itch all the time, so he gave me hydroxyzine pills (they help the

itching) & i have to bathe with cetaphil & wash clothes in detergent

without dyes or perfumes. He also gave me some ointment that's like

smearing really thick vaseline verywhere to rub off on my clothes &

linens (yuck). I get small patches that they cut a plug out of me to see

what they are, those burn like they're on fire & when they heal they

leave a hard dark spot (those i have all over my chest & mid section) .

Long story around i know what your going through.

> ________________________________

>

>

Link to comment
Share on other sites

>

> Hi my name is , I usually don't post that often, but I think

I'll be doing it more often even do I'm very shy. I apply for SS and

they denied my benefits, so I'm going to appeal. Do you believe my

doctors said that I could lift weight up to 50 pounds, that's crazy! If

I'm bromine or moping my arms start hurting allot imagine lifting up all

that weight. So I'm really upset. With my health I'm sore of my legs and

really tire. I have appointment with my reumatologist until December. I

don't know if he is going to start me in a new medication. What I'm

starting to have is allot of allergy in may face, and sometimes I feel

like my face is burning. Hopefully it goes away when I wash my face and

lubricated. But sometimes I feel my face so super dry, I don't know if

this happens to any one else, and what do you do about it. Well good to

have post thank you.

>

>

> Hi , i don't post hardly ever myself. But in reply to your

situation, i recently applied for ss disability myself. I used Allsup,

you can google them to find out if you want to use them. They manage

just about everything & are trained in how to phrase your situation to

benefit you. I know i can't handle the stress of everything they need to

prove what i need. Also, i have had a rash everywhere but my face. The

dermatologist did testing on me & still isn't sure what it is. But i

itch all the time, so he gave me hydroxyzine pills (they help the

itching) & i have to bathe with cetaphil & wash clothes in detergent

without dyes or perfumes. He also gave me some ointment that's like

smearing really thick vaseline verywhere to rub off on my clothes &

linens (yuck). I get small patches that they cut a plug out of me to see

what they are, those burn like they're on fire & when they heal they

leave a hard dark spot (those i have all over my chest & mid section) .

Long story around i know what your going through.

> ________________________________

>

>

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  • 6 months later...
Guest guest

That is horrible you are in my prayers!

 

jamie123tech@...

 

 

________________________________

To: stillsdisease <Stillsdisease >

Sent: Tuesday, May 1, 2012 10:10 PM

Subject: update

 

Howdy...I've been living in hell again for the past few weeks. I had to

have my morphine pump implant replaced as the battery was dying after 7

years. I can't complain about that as it allowed me to stand up without a

walker and all of that good stuff and my battery actually lasted 2 years

longer than average.

My problem started 3 days prior to the surgery as one of my F******

headaches from hell decided to start up. Well, long story short it jest

kept ratcheting up day by day after the surgery to the point where I

couldn't in good conscience take anymore pills. Than the teeth in the upper

right part of my mouth started to literally all feel abscessed all at once,

than my right ear started to cause me unbelievable pain. I had to call in

my Dentist after hours yet my teeth (although they are all broken/shattered

from the roids and the headaches...not to count my younger years with fist

fights/wrestling etc.) so I tried to call my PCP as I felt I could take it

no more and I had to go to the ER/resort. Well, my luck has not changed, my

PCP was not on call and the answering service would not do anything for me

other than to tell me to take tylenol and go to the ER. I swore after the

last time I had to go to the ER without a Dr calling ahead that I'd never

do it again. Once they see my medication list and morphine pump implant

they automatically label me a drug seeker and treat me worse than an abused

dog.

I have had it. Today is the first day the headache has dropped at all,

from a 10 to maybe a 9, and that may be generous. I was able to get into

see my PCP today and he is going to see if there is a way he can have

something inserted into my records for the ER exclusively so that they

don't ever do what they always do to me again. I layed in agony for 12

straight days. I had to force myself just to get up to go to the bathroom

and stuff like that. Te pain was indescribable.

Anyone know of a way to nail these " Holier Than Though " ER people who

treat many of us like shit??? I literally can not go without my Dr calling

as I know that I will KILL at least one of those SOBs the next time they

give me the " ATTITUDE " they love to show people they don't want to deal

with.

I swear a they have a requirement that you have to be a miserable

arrogant a**HOLE to work in an ER.

Just venting. My PCP wanted to know how I was able to stay out of the ER

and I was honest..I doubled my HYDROMORPHONE dose, placed ice packs on my

head and repeatedly smashed my head off of one of the 8x8 wooden supports

in my basement. I really am glad I had the original bars removed and the

8x8s installed so that my regulation billiard table ( 9' x 4.5' ) as

smashing my head as hard as I can off of those actually helps. Not by a

great amount, but enough.

He begged me to never do that again and never tell anyone in the ER that

as they'd stick me in the wacko-ward! What a life we get to live! I guess

that has to be looked at through rose colored glasses to be able to call

what some of us do as " Live " .

Later, Kirk.

--

Everything in life sucks except things that should!

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Guest guest

That is horrible you are in my prayers!

 

jamie123tech@...

 

 

________________________________

To: stillsdisease <Stillsdisease >

Sent: Tuesday, May 1, 2012 10:10 PM

Subject: update

 

Howdy...I've been living in hell again for the past few weeks. I had to

have my morphine pump implant replaced as the battery was dying after 7

years. I can't complain about that as it allowed me to stand up without a

walker and all of that good stuff and my battery actually lasted 2 years

longer than average.

My problem started 3 days prior to the surgery as one of my F******

headaches from hell decided to start up. Well, long story short it jest

kept ratcheting up day by day after the surgery to the point where I

couldn't in good conscience take anymore pills. Than the teeth in the upper

right part of my mouth started to literally all feel abscessed all at once,

than my right ear started to cause me unbelievable pain. I had to call in

my Dentist after hours yet my teeth (although they are all broken/shattered

from the roids and the headaches...not to count my younger years with fist

fights/wrestling etc.) so I tried to call my PCP as I felt I could take it

no more and I had to go to the ER/resort. Well, my luck has not changed, my

PCP was not on call and the answering service would not do anything for me

other than to tell me to take tylenol and go to the ER. I swore after the

last time I had to go to the ER without a Dr calling ahead that I'd never

do it again. Once they see my medication list and morphine pump implant

they automatically label me a drug seeker and treat me worse than an abused

dog.

I have had it. Today is the first day the headache has dropped at all,

from a 10 to maybe a 9, and that may be generous. I was able to get into

see my PCP today and he is going to see if there is a way he can have

something inserted into my records for the ER exclusively so that they

don't ever do what they always do to me again. I layed in agony for 12

straight days. I had to force myself just to get up to go to the bathroom

and stuff like that. Te pain was indescribable.

Anyone know of a way to nail these " Holier Than Though " ER people who

treat many of us like shit??? I literally can not go without my Dr calling

as I know that I will KILL at least one of those SOBs the next time they

give me the " ATTITUDE " they love to show people they don't want to deal

with.

I swear a they have a requirement that you have to be a miserable

arrogant a**HOLE to work in an ER.

Just venting. My PCP wanted to know how I was able to stay out of the ER

and I was honest..I doubled my HYDROMORPHONE dose, placed ice packs on my

head and repeatedly smashed my head off of one of the 8x8 wooden supports

in my basement. I really am glad I had the original bars removed and the

8x8s installed so that my regulation billiard table ( 9' x 4.5' ) as

smashing my head as hard as I can off of those actually helps. Not by a

great amount, but enough.

He begged me to never do that again and never tell anyone in the ER that

as they'd stick me in the wacko-ward! What a life we get to live! I guess

that has to be looked at through rose colored glasses to be able to call

what some of us do as " Live " .

Later, Kirk.

--

Everything in life sucks except things that should!

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Guest guest

That is horrible you are in my prayers!

 

jamie123tech@...

 

 

________________________________

To: stillsdisease <Stillsdisease >

Sent: Tuesday, May 1, 2012 10:10 PM

Subject: update

 

Howdy...I've been living in hell again for the past few weeks. I had to

have my morphine pump implant replaced as the battery was dying after 7

years. I can't complain about that as it allowed me to stand up without a

walker and all of that good stuff and my battery actually lasted 2 years

longer than average.

My problem started 3 days prior to the surgery as one of my F******

headaches from hell decided to start up. Well, long story short it jest

kept ratcheting up day by day after the surgery to the point where I

couldn't in good conscience take anymore pills. Than the teeth in the upper

right part of my mouth started to literally all feel abscessed all at once,

than my right ear started to cause me unbelievable pain. I had to call in

my Dentist after hours yet my teeth (although they are all broken/shattered

from the roids and the headaches...not to count my younger years with fist

fights/wrestling etc.) so I tried to call my PCP as I felt I could take it

no more and I had to go to the ER/resort. Well, my luck has not changed, my

PCP was not on call and the answering service would not do anything for me

other than to tell me to take tylenol and go to the ER. I swore after the

last time I had to go to the ER without a Dr calling ahead that I'd never

do it again. Once they see my medication list and morphine pump implant

they automatically label me a drug seeker and treat me worse than an abused

dog.

I have had it. Today is the first day the headache has dropped at all,

from a 10 to maybe a 9, and that may be generous. I was able to get into

see my PCP today and he is going to see if there is a way he can have

something inserted into my records for the ER exclusively so that they

don't ever do what they always do to me again. I layed in agony for 12

straight days. I had to force myself just to get up to go to the bathroom

and stuff like that. Te pain was indescribable.

Anyone know of a way to nail these " Holier Than Though " ER people who

treat many of us like shit??? I literally can not go without my Dr calling

as I know that I will KILL at least one of those SOBs the next time they

give me the " ATTITUDE " they love to show people they don't want to deal

with.

I swear a they have a requirement that you have to be a miserable

arrogant a**HOLE to work in an ER.

Just venting. My PCP wanted to know how I was able to stay out of the ER

and I was honest..I doubled my HYDROMORPHONE dose, placed ice packs on my

head and repeatedly smashed my head off of one of the 8x8 wooden supports

in my basement. I really am glad I had the original bars removed and the

8x8s installed so that my regulation billiard table ( 9' x 4.5' ) as

smashing my head as hard as I can off of those actually helps. Not by a

great amount, but enough.

He begged me to never do that again and never tell anyone in the ER that

as they'd stick me in the wacko-ward! What a life we get to live! I guess

that has to be looked at through rose colored glasses to be able to call

what some of us do as " Live " .

Later, Kirk.

--

Everything in life sucks except things that should!

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  • 2 months later...
Guest guest

I've known for close to 10 years that my luck really and truly sucks,

but it is getting worse....I think. Back in April I had to have my morphine

pump implant replaced as after 7 years it was at the end of its' life. The

surgery went very well at the time, but a hair over a week later I was back

in with a viscous headache. Not much new there, but this was in May, a time

when the headaches usually start to diminish until the cold weather

returns...which after spending countless amounts of money and driving all

over the Eastern seaboard the best diagnosis anyone could come up with is

" New Daily Persistent Headache " which was diagnosed by Dr. Wm Young (great

DR!) but no one has a solution for them other than incredibly strong

narcotic type of meds that I have no choice to use as little as possible if

I want to be in control of my life and mind, which I do.

This summer we had planned our 1st major vacation since we married 16

1/2 years ago. We were taking the kids to burg,Va. to go to Busch

Gardens, Water Park USA, Historic downtown burg etc.....Roughly 3

weeks prior to the vacation I bumped the area where the morphine pump

implant was and felt horrendous pain. I lifted my shirt and almost shit

myself as it was as red as an apple, swollen and hot. I immediately

contacted my Neuro Surgeon who saw me the next day. They drew a lot of

blood and put me on Keflex. Nothing showed up in my blood work or on the

cultures. They wanted to rip it out at that point but I convinced them to

let me take my family on vacation..so they gave me another few weeks worth

of Keflex and written orders in case anything happened while I was away.

I wasn't able to enjoy much of the vacation, but the wife and kids had a

blast, which was good enough for me. Than roughly 10-12 days ago I knew I

was in trouble as it was starting to get ugly again. I had an appointment

and was to be admitted and have it removed but I never mad it that far as I

wound up with fevers, chills, a blinding headache and in my

absolutely least favorite place to be, which is the ER!! I've come close to

slugging a couple of assholes that work there and love to look at my

med list and assume I am a druggie, which is about one of the worst thins

I've ever been accused of yet have never, ever been nor do I plan to be. I

had enough friends that I grew up with go down that road enough to know

that one would have to be as dense as hell to even think of trying any of

that shit.

The first day+ was absolute HELL on earth, again but luckily my neuro

surgeon was working this past weekend and it was removed on Sunday. It is

frightening how good death looks like when you're in that kind of agony.

After 2 days I started to feel somewhat human again, but they had yet to

break the headache. One thing that caught me off guard was severe diarrhea

and of course when they did a culture they found C-Dif. OUTSTANDING!

I know I need to lose a bunch of weight but this isn't how I had

envisioned beginning it. Once they found that out I was placed in isolation

which compounded matters as when my back would start to kill me I'd walk

the halls for a few minutes at a time (well, what I call walking at

least.... cane and all..which still beats the walker I had to use for 16

months earlier in this disease.

Now I've gone 8 days with a total of about 14-16 hours of sleep as I

can't get comfortable as my back and neck kill me when I lie down. To

make matters worse they found the cause of the infection, which was a staff

infection.....more damn meds! The worst part is that they have to wait at

least 2.5 months before they can implant another due to the increased risk

of infection.

So much for me getting to enjoy my summer, which is what I look forward

to each and every year as it is the only time of year when I feel halfway

decent. I'll still coach football, but won't be able to be as hands on as I

like to be which is going to kill me.

Oh well. Just thought I'd give this update/rant. I also figured out that

I should never, ever gamble due o this shit luck I have.

Kirk.,

--

Everything in life sucks except things that should!

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