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Hi everyone is me , and I just wanted to thank everyone who gave me a hint

of how to deal with this problem I have of SSI. Well I couln't post more sooner,

but I read all the posts. How do you called that , I dont remember o well.

Im doing okey, wright now, the only problem Im having is that everytime that I

walk the next day, my legs get so sore I just dont like that at all. I just dont

enjoyed shopping at all because then my thigh starts hurting really badly, and

the thing is that I dont want to start getting use to get those wheelchair that

they have in some stores;( But if there is no other choice Im afraid I must

start doing that. Okey I must go, take care everybody.     

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Hi ,I know it's hard to use extra things like the electric carts but

sometimes we can only enjoy or do the necessities of shopping if we do. It may

not be recommended by your doctor to do all the time but consider it if you are

in much pain and it will help.I would tell your doctor about the pain you are

having because it could be something is wrong or just damage happening from your

arthritis as the years pass but it is good to tell them everything for your

social security application and approval.Best of luck, to thank everyone

who gave me a hint of how to deal with this problem I have of SSI. the only

problem Im having is that everytime that I walk the next day, my legs get so

sore I just dont like that at all. I just dont enjoyed shopping at all because

then my thigh starts hurting really badly, and the thing is that I dont want to

start getting use to get those wheelchair that they have in some stores;( But if

there is no other choice Im afraid I must start doing that.

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  • 3 weeks later...

Kimber,

What wonderful blessings for your family and the baby. I wish you all the

best there is.

I also would like you to post when you can about how the increase of

medication goes for you. I know sometimes life does not let us stop if we

want to go on living, just remember to take even those 15 minute reprieves

for yourself to relax and calm.

Special hugs for peace, wellness and happiness.

Smiles,

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

MARKETPLACE

Stay on top of your group activity without leaving the page you're on - Get

the Yahoo! Toolbar now. Switch to: Text-Only, Daily Digest • Unsubscribe •

Terms of Use.

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Kimber,

What wonderful blessings for your family and the baby. I wish you all the

best there is.

I also would like you to post when you can about how the increase of

medication goes for you. I know sometimes life does not let us stop if we

want to go on living, just remember to take even those 15 minute reprieves

for yourself to relax and calm.

Special hugs for peace, wellness and happiness.

Smiles,

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

MARKETPLACE

Stay on top of your group activity without leaving the page you're on - Get

the Yahoo! Toolbar now. Switch to: Text-Only, Daily Digest • Unsubscribe •

Terms of Use.

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Share on other sites

Kimber,

What wonderful blessings for your family and the baby. I wish you all the

best there is.

I also would like you to post when you can about how the increase of

medication goes for you. I know sometimes life does not let us stop if we

want to go on living, just remember to take even those 15 minute reprieves

for yourself to relax and calm.

Special hugs for peace, wellness and happiness.

Smiles,

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

MARKETPLACE

Stay on top of your group activity without leaving the page you're on - Get

the Yahoo! Toolbar now. Switch to: Text-Only, Daily Digest • Unsubscribe •

Terms of Use.

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  • 2 weeks later...

Hello Folks!

Ok....update from my email of last Wednesday....by the way, thank you for

your reply and support! 

I went to the ER and the doc thought either blood clot (DVT) or " nasty

infection. "    Ultrasound showed negative for DVT......sooooooooo, Cellulitis is

the correct diagnosis behind curtain number eight!  Uh huh!  Yep, my foot all

the way to my knee is swollen and still hurts like hell.....my pain meds don't

even touch the pain!

The redness has decreased and i am on potent antibiotics.....anyway that's my

story....i hope the rest of you are ok....welcome all you new folks.....hang in

here....this is the best place to be!

Many Blessings.

Larry B. from NC

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Lar,

Thank you for giving us the update. That is a drag to have gotten such a

diagnoses. I haven't read up on it and think I will, but do you know what

causes it?

I hope it clears up without getting further complications.

Stay in touch when you're up to it please. Thinking of you friend.

Subject: [stills disease] Update

Hello Folks!

Ok....update from my email of last Wednesday

Reply to sender | Reply to group | Reply via web post | Start a New Topic

Messages in this topic (268)

Recent Activity: New Members 1

Visit Your Group

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

Ion by any person following the information offered or provided within this

support form.

MARKETPLACE

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the Yahoo! Toolbar now. Switch to: Text-Only, Daily Digest • Unsubscribe •

Terms of Use.

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Lar,

Thank you for giving us the update. That is a drag to have gotten such a

diagnoses. I haven't read up on it and think I will, but do you know what

causes it?

I hope it clears up without getting further complications.

Stay in touch when you're up to it please. Thinking of you friend.

Subject: [stills disease] Update

Hello Folks!

Ok....update from my email of last Wednesday

Reply to sender | Reply to group | Reply via web post | Start a New Topic

Messages in this topic (268)

Recent Activity: New Members 1

Visit Your Group

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

Ion by any person following the information offered or provided within this

support form.

MARKETPLACE

Stay on top of your group activity without leaving the page you're on - Get

the Yahoo! Toolbar now. Switch to: Text-Only, Daily Digest • Unsubscribe •

Terms of Use.

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Share on other sites

Sent using BlackBerry® from mobinil

[stills disease] Update

Hello Folks!

Ok....update from my email of last Wednesday

Reply to sender | Reply to group | Reply via web post | Start a New Topic

Messages in this topic (268)

Recent Activity: New Members 1

Visit Your Group

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

Ion by any person following the information offered or provided within this

support form.

MARKETPLACE

Stay on top of your group activity without leaving the page you're on - Get

the Yahoo! Toolbar now. Switch to: Text-Only, Daily Digest • Unsubscribe •

Terms of Use.

Link to comment
Share on other sites

Sent using BlackBerry® from mobinil

[stills disease] Update

Hello Folks!

Ok....update from my email of last Wednesday

Reply to sender | Reply to group | Reply via web post | Start a New Topic

Messages in this topic (268)

Recent Activity: New Members 1

Visit Your Group

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

Ion by any person following the information offered or provided within this

support form.

MARKETPLACE

Stay on top of your group activity without leaving the page you're on - Get

the Yahoo! Toolbar now. Switch to: Text-Only, Daily Digest • Unsubscribe •

Terms of Use.

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Share on other sites

  • 7 months later...
Guest guest

Well, Kirk, what you should be doing is writing stories! I hung on every

word! You have a gift, my dear, and might enjoy writing different life

stories than the one you're living, anyway!

How sad that you couldn't get the full enjoyment of your long-awaited

vacation. It's a bitch of a disease, isn't it! And you've been through

far more than I have with it in the last 10 years. What amazes me is how

vulnerable and fragile this disease makes us! Every passing everything

finds a happy home in a body with no immune system. Even just getting

tired out (like yesterday) will start a flare because of overused muscles.

Life moves so slowly when I can only work on something for an hour or two

at a a time.

I truly hope that things start to look up soon and that you see a shaman

somewhere who can lift the 'bad luck blanket' that found a home around you.

I want my husband to see a shaman who can alter his 'restaurant karma'...

it doesn't matter WHERE we go... something odd always happens... waitresses

spill iced tea on him, our orders take forever and are generally wrong, you

get the idea. He also has 'bad line karma' which after 38 years of

marriage has rubbed off on me now, it doesn't matter where we are.. we are

always in the wrong line. My favorite line was at WalMart one day where

the guy in front of me carefully, painstakingly wrote down in his check

register... every item he bought!! It took forever.. and here in Wyoming

we are endlessly polite.. we never say anything like 'WTF ARE YOU DOING..

YOU NUMBSKULL!! Don't you know that's what the receipt is for???' So, we

wait.

Whoa.. I went off base there for awhile. I hope you are doing better

soon.. but mostly I hope you continue to find ways to keep your chin up and

soldier on.. even though it gets so tiring after so long, doesn't it!

I'm with you here, as we all are. Thanks for sharing.

Peace and Blessings,

Love,

*Holly *

*hollydorst@...*

*

*

> **

>

>

> 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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Guest guest

Well, Kirk, what you should be doing is writing stories! I hung on every

word! You have a gift, my dear, and might enjoy writing different life

stories than the one you're living, anyway!

How sad that you couldn't get the full enjoyment of your long-awaited

vacation. It's a bitch of a disease, isn't it! And you've been through

far more than I have with it in the last 10 years. What amazes me is how

vulnerable and fragile this disease makes us! Every passing everything

finds a happy home in a body with no immune system. Even just getting

tired out (like yesterday) will start a flare because of overused muscles.

Life moves so slowly when I can only work on something for an hour or two

at a a time.

I truly hope that things start to look up soon and that you see a shaman

somewhere who can lift the 'bad luck blanket' that found a home around you.

I want my husband to see a shaman who can alter his 'restaurant karma'...

it doesn't matter WHERE we go... something odd always happens... waitresses

spill iced tea on him, our orders take forever and are generally wrong, you

get the idea. He also has 'bad line karma' which after 38 years of

marriage has rubbed off on me now, it doesn't matter where we are.. we are

always in the wrong line. My favorite line was at WalMart one day where

the guy in front of me carefully, painstakingly wrote down in his check

register... every item he bought!! It took forever.. and here in Wyoming

we are endlessly polite.. we never say anything like 'WTF ARE YOU DOING..

YOU NUMBSKULL!! Don't you know that's what the receipt is for???' So, we

wait.

Whoa.. I went off base there for awhile. I hope you are doing better

soon.. but mostly I hope you continue to find ways to keep your chin up and

soldier on.. even though it gets so tiring after so long, doesn't it!

I'm with you here, as we all are. Thanks for sharing.

Peace and Blessings,

Love,

*Holly *

*hollydorst@...*

*

*

> **

>

>

> 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!

>

>

Link to comment
Share on other sites

Guest guest

Well, Kirk, what you should be doing is writing stories! I hung on every

word! You have a gift, my dear, and might enjoy writing different life

stories than the one you're living, anyway!

How sad that you couldn't get the full enjoyment of your long-awaited

vacation. It's a bitch of a disease, isn't it! And you've been through

far more than I have with it in the last 10 years. What amazes me is how

vulnerable and fragile this disease makes us! Every passing everything

finds a happy home in a body with no immune system. Even just getting

tired out (like yesterday) will start a flare because of overused muscles.

Life moves so slowly when I can only work on something for an hour or two

at a a time.

I truly hope that things start to look up soon and that you see a shaman

somewhere who can lift the 'bad luck blanket' that found a home around you.

I want my husband to see a shaman who can alter his 'restaurant karma'...

it doesn't matter WHERE we go... something odd always happens... waitresses

spill iced tea on him, our orders take forever and are generally wrong, you

get the idea. He also has 'bad line karma' which after 38 years of

marriage has rubbed off on me now, it doesn't matter where we are.. we are

always in the wrong line. My favorite line was at WalMart one day where

the guy in front of me carefully, painstakingly wrote down in his check

register... every item he bought!! It took forever.. and here in Wyoming

we are endlessly polite.. we never say anything like 'WTF ARE YOU DOING..

YOU NUMBSKULL!! Don't you know that's what the receipt is for???' So, we

wait.

Whoa.. I went off base there for awhile. I hope you are doing better

soon.. but mostly I hope you continue to find ways to keep your chin up and

soldier on.. even though it gets so tiring after so long, doesn't it!

I'm with you here, as we all are. Thanks for sharing.

Peace and Blessings,

Love,

*Holly *

*hollydorst@...*

*

*

> **

>

>

> 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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Guest guest

Hey Brother!

Man, I hate to hear of all this terrible luck you have been having!  Seems like

if we didn't have bad luck we would have no luck at all......just damn!  What a

crappy place to be in life!  I do pray you will find some relief my friend!

Larry

Subject: update

To: " stillsdisease " <Stillsdisease >

Date: Saturday, August 4, 2012, 8:49 AM

 

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!

Link to comment
Share on other sites

Guest guest

Hey Brother!

Man, I hate to hear of all this terrible luck you have been having!  Seems like

if we didn't have bad luck we would have no luck at all......just damn!  What a

crappy place to be in life!  I do pray you will find some relief my friend!

Larry

Subject: update

To: " stillsdisease " <Stillsdisease >

Date: Saturday, August 4, 2012, 8:49 AM

 

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!

Link to comment
Share on other sites

Guest guest

Hey Brother!

Man, I hate to hear of all this terrible luck you have been having!  Seems like

if we didn't have bad luck we would have no luck at all......just damn!  What a

crappy place to be in life!  I do pray you will find some relief my friend!

Larry

Subject: update

To: " stillsdisease " <Stillsdisease >

Date: Saturday, August 4, 2012, 8:49 AM

 

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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Share on other sites

Guest guest

Thanks for the compliment on my writing style! I actually have written

300+ songs(though none in at least 15 years) which are mostly along the

lines of punk/rock/metal with a flare towards the " Zappa " style. I

actually was the lead singer in a band (D.E.T.H. (Direct Entry To Hell))

but absolutely despise any kind of racial supremacists (I've beaten the

hell out of quite a few in my earlier days) and as bad as I wished it would

never have happened, that's the type of crowd our music attracted,and I

still don't understand exactly how. Maybe we were way ahead of the times as

I can't carry a note to save my life but I have a tremendous " power " voice.

You cracked me up in your closing statement of " soldier on " . I'd kill

for my military medical records. I joined the Pa National Guard in Nov. of

89 to make a few extras bucks and take care of the cost of college. I

wanted to join the Marines but my Uncle/God-Father who lost his leg in

Vietnam started to beat me with his fake leg when he found out I

was talking to a Marine recruiter. He told me I wasn't " allowed " . I know I

could have whipped his ass, but out of shear respect I listened. I wound up

in Basic Training @ Ft. Benning, Ga in June of 1990 but our whole unit was

delayed in reception for 3 weeks which made it impossible for me to

complete Basic & A.I.T.. To be a bit more concise my problems all began 2

days after we received all of our immunizations and such. I wound up in a

hospital for 15 days with 95% of the same symptoms that were there when I

got whacked in Jan '04. I've ripped a VA rep over his desk for trying to

blow me off and have been through more congressmen/women that I can

imagine. They claim my records were " lost " . Very convenient! I could buy

that until my RD who also goes to the V.A. hospital on call in Lebanon, Pa

found out my name is in fact in their computer, yet no one he knows

can access my info!!! One day I may just go find myself an M-60 machine

gun, mount it to the hood of my truck and go on a nice little spree!

Just kidding!

I've written every hospital within 50 miles of Ft Benning and none has

any record of me, which is impossible as I was hospitalized 2x while there!

Some day I will get these records, but with my luck I'll never

live long enough to enjoy what the F they owe me!

Later, Kirk

> Well, Kirk, what you should be doing is writing stories! I hung on every

> word! You have a gift, my dear, and might enjoy writing different life

> stories than the one you're living, anyway!

> How sad that you couldn't get the full enjoyment of your long-awaited

> vacation. It's a bitch of a disease, isn't it! And you've been through

> far more than I have with it in the last 10 years. What amazes me is how

> vulnerable and fragile this disease makes us! Every passing everything

> finds a happy home in a body with no immune system. Even just getting

> tired out (like yesterday) will start a flare because of overused muscles.

> Life moves so slowly when I can only work on something for an hour or two

> at a a time.

> I truly hope that things start to look up soon and that you see a shaman

> somewhere who can lift the 'bad luck blanket' that found a home around you.

>

> I want my husband to see a shaman who can alter his 'restaurant karma'...

> it doesn't matter WHERE we go... something odd always happens... waitresses

> spill iced tea on him, our orders take forever and are generally wrong, you

> get the idea. He also has 'bad line karma' which after 38 years of

> marriage has rubbed off on me now, it doesn't matter where we are.. we are

> always in the wrong line. My favorite line was at WalMart one day where

> the guy in front of me carefully, painstakingly wrote down in his check

> register... every item he bought!! It took forever.. and here in Wyoming

> we are endlessly polite.. we never say anything like 'WTF ARE YOU DOING..

> YOU NUMBSKULL!! Don't you know that's what the receipt is for???' So, we

> wait.

> Whoa.. I went off base there for awhile. I hope you are doing better

> soon.. but mostly I hope you continue to find ways to keep your chin up and

> soldier on.. even though it gets so tiring after so long, doesn't it!

> I'm with you here, as we all are. Thanks for sharing.

> Peace and Blessings,

> Love,

> *Holly *

> *hollydorst@...*

> *

> *

>

>

>

>

>

> > **

> >

> >

> > 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!

> >

> >

Link to comment
Share on other sites

Guest guest

Thanks for the compliment on my writing style! I actually have written

300+ songs(though none in at least 15 years) which are mostly along the

lines of punk/rock/metal with a flare towards the " Zappa " style. I

actually was the lead singer in a band (D.E.T.H. (Direct Entry To Hell))

but absolutely despise any kind of racial supremacists (I've beaten the

hell out of quite a few in my earlier days) and as bad as I wished it would

never have happened, that's the type of crowd our music attracted,and I

still don't understand exactly how. Maybe we were way ahead of the times as

I can't carry a note to save my life but I have a tremendous " power " voice.

You cracked me up in your closing statement of " soldier on " . I'd kill

for my military medical records. I joined the Pa National Guard in Nov. of

89 to make a few extras bucks and take care of the cost of college. I

wanted to join the Marines but my Uncle/God-Father who lost his leg in

Vietnam started to beat me with his fake leg when he found out I

was talking to a Marine recruiter. He told me I wasn't " allowed " . I know I

could have whipped his ass, but out of shear respect I listened. I wound up

in Basic Training @ Ft. Benning, Ga in June of 1990 but our whole unit was

delayed in reception for 3 weeks which made it impossible for me to

complete Basic & A.I.T.. To be a bit more concise my problems all began 2

days after we received all of our immunizations and such. I wound up in a

hospital for 15 days with 95% of the same symptoms that were there when I

got whacked in Jan '04. I've ripped a VA rep over his desk for trying to

blow me off and have been through more congressmen/women that I can

imagine. They claim my records were " lost " . Very convenient! I could buy

that until my RD who also goes to the V.A. hospital on call in Lebanon, Pa

found out my name is in fact in their computer, yet no one he knows

can access my info!!! One day I may just go find myself an M-60 machine

gun, mount it to the hood of my truck and go on a nice little spree!

Just kidding!

I've written every hospital within 50 miles of Ft Benning and none has

any record of me, which is impossible as I was hospitalized 2x while there!

Some day I will get these records, but with my luck I'll never

live long enough to enjoy what the F they owe me!

Later, Kirk

> Well, Kirk, what you should be doing is writing stories! I hung on every

> word! You have a gift, my dear, and might enjoy writing different life

> stories than the one you're living, anyway!

> How sad that you couldn't get the full enjoyment of your long-awaited

> vacation. It's a bitch of a disease, isn't it! And you've been through

> far more than I have with it in the last 10 years. What amazes me is how

> vulnerable and fragile this disease makes us! Every passing everything

> finds a happy home in a body with no immune system. Even just getting

> tired out (like yesterday) will start a flare because of overused muscles.

> Life moves so slowly when I can only work on something for an hour or two

> at a a time.

> I truly hope that things start to look up soon and that you see a shaman

> somewhere who can lift the 'bad luck blanket' that found a home around you.

>

> I want my husband to see a shaman who can alter his 'restaurant karma'...

> it doesn't matter WHERE we go... something odd always happens... waitresses

> spill iced tea on him, our orders take forever and are generally wrong, you

> get the idea. He also has 'bad line karma' which after 38 years of

> marriage has rubbed off on me now, it doesn't matter where we are.. we are

> always in the wrong line. My favorite line was at WalMart one day where

> the guy in front of me carefully, painstakingly wrote down in his check

> register... every item he bought!! It took forever.. and here in Wyoming

> we are endlessly polite.. we never say anything like 'WTF ARE YOU DOING..

> YOU NUMBSKULL!! Don't you know that's what the receipt is for???' So, we

> wait.

> Whoa.. I went off base there for awhile. I hope you are doing better

> soon.. but mostly I hope you continue to find ways to keep your chin up and

> soldier on.. even though it gets so tiring after so long, doesn't it!

> I'm with you here, as we all are. Thanks for sharing.

> Peace and Blessings,

> Love,

> *Holly *

> *hollydorst@...*

> *

> *

>

>

>

>

>

> > **

> >

> >

> > 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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Thanks for the compliment on my writing style! I actually have written

300+ songs(though none in at least 15 years) which are mostly along the

lines of punk/rock/metal with a flare towards the " Zappa " style. I

actually was the lead singer in a band (D.E.T.H. (Direct Entry To Hell))

but absolutely despise any kind of racial supremacists (I've beaten the

hell out of quite a few in my earlier days) and as bad as I wished it would

never have happened, that's the type of crowd our music attracted,and I

still don't understand exactly how. Maybe we were way ahead of the times as

I can't carry a note to save my life but I have a tremendous " power " voice.

You cracked me up in your closing statement of " soldier on " . I'd kill

for my military medical records. I joined the Pa National Guard in Nov. of

89 to make a few extras bucks and take care of the cost of college. I

wanted to join the Marines but my Uncle/God-Father who lost his leg in

Vietnam started to beat me with his fake leg when he found out I

was talking to a Marine recruiter. He told me I wasn't " allowed " . I know I

could have whipped his ass, but out of shear respect I listened. I wound up

in Basic Training @ Ft. Benning, Ga in June of 1990 but our whole unit was

delayed in reception for 3 weeks which made it impossible for me to

complete Basic & A.I.T.. To be a bit more concise my problems all began 2

days after we received all of our immunizations and such. I wound up in a

hospital for 15 days with 95% of the same symptoms that were there when I

got whacked in Jan '04. I've ripped a VA rep over his desk for trying to

blow me off and have been through more congressmen/women that I can

imagine. They claim my records were " lost " . Very convenient! I could buy

that until my RD who also goes to the V.A. hospital on call in Lebanon, Pa

found out my name is in fact in their computer, yet no one he knows

can access my info!!! One day I may just go find myself an M-60 machine

gun, mount it to the hood of my truck and go on a nice little spree!

Just kidding!

I've written every hospital within 50 miles of Ft Benning and none has

any record of me, which is impossible as I was hospitalized 2x while there!

Some day I will get these records, but with my luck I'll never

live long enough to enjoy what the F they owe me!

Later, Kirk

> Well, Kirk, what you should be doing is writing stories! I hung on every

> word! You have a gift, my dear, and might enjoy writing different life

> stories than the one you're living, anyway!

> How sad that you couldn't get the full enjoyment of your long-awaited

> vacation. It's a bitch of a disease, isn't it! And you've been through

> far more than I have with it in the last 10 years. What amazes me is how

> vulnerable and fragile this disease makes us! Every passing everything

> finds a happy home in a body with no immune system. Even just getting

> tired out (like yesterday) will start a flare because of overused muscles.

> Life moves so slowly when I can only work on something for an hour or two

> at a a time.

> I truly hope that things start to look up soon and that you see a shaman

> somewhere who can lift the 'bad luck blanket' that found a home around you.

>

> I want my husband to see a shaman who can alter his 'restaurant karma'...

> it doesn't matter WHERE we go... something odd always happens... waitresses

> spill iced tea on him, our orders take forever and are generally wrong, you

> get the idea. He also has 'bad line karma' which after 38 years of

> marriage has rubbed off on me now, it doesn't matter where we are.. we are

> always in the wrong line. My favorite line was at WalMart one day where

> the guy in front of me carefully, painstakingly wrote down in his check

> register... every item he bought!! It took forever.. and here in Wyoming

> we are endlessly polite.. we never say anything like 'WTF ARE YOU DOING..

> YOU NUMBSKULL!! Don't you know that's what the receipt is for???' So, we

> wait.

> Whoa.. I went off base there for awhile. I hope you are doing better

> soon.. but mostly I hope you continue to find ways to keep your chin up and

> soldier on.. even though it gets so tiring after so long, doesn't it!

> I'm with you here, as we all are. Thanks for sharing.

> Peace and Blessings,

> Love,

> *Holly *

> *hollydorst@...*

> *

> *

>

>

>

>

>

> > **

> >

> >

> > 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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Guest guest

Thanks Larry....I'm sitting here, it is 96 degrees outside and I can't

shake the damn chills! Take care and thanks for the thoughts man, Kirk.

> **

>

>

> Hey Brother!

> Man, I hate to hear of all this terrible luck you have been having! Seems

> like if we didn't have bad luck we would have no luck at all......just

> damn! What a crappy place to be in life! I do pray you will find some

> relief my friend!

> Larry

>

>

>

>

> Subject: update

> To: " stillsdisease " <Stillsdisease >

> Date: Saturday, August 4, 2012, 8:49 AM

>

>

>

>

> 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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Share on other sites

Guest guest

Thanks Larry....I'm sitting here, it is 96 degrees outside and I can't

shake the damn chills! Take care and thanks for the thoughts man, Kirk.

> **

>

>

> Hey Brother!

> Man, I hate to hear of all this terrible luck you have been having! Seems

> like if we didn't have bad luck we would have no luck at all......just

> damn! What a crappy place to be in life! I do pray you will find some

> relief my friend!

> Larry

>

>

>

>

> Subject: update

> To: " stillsdisease " <Stillsdisease >

> Date: Saturday, August 4, 2012, 8:49 AM

>

>

>

>

> 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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Share on other sites

Guest guest

Hello Kirk,

What a frightening experience you have been through. I can empathize with every

step.

Has anyone offered you Nucynta? I have seen some literature on it as an

alternative pain medication.

Sometimes the opioid can initiate headaches.

I wish i could give you some other great advice but it sounds like in spite of

all the trials you are still hanging in there.

Harry S.

To: Stillsdisease

From: stillsman00@...

Date: Sat, 4 Aug 2012 09:40:27 -0700

Subject: Re: update

Hey Brother!

Man, I hate to hear of all this terrible luck you have been having! Seems like

if we didn't have bad luck we would have no luck at all......just damn! What a

crappy place to be in life! I do pray you will find some relief my friend!

Larry

Subject: update

To: " stillsdisease " <Stillsdisease >

Date: Saturday, August 4, 2012, 8:49 AM

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!

Link to comment
Share on other sites

Guest guest

Hello Kirk,

What a frightening experience you have been through. I can empathize with every

step.

Has anyone offered you Nucynta? I have seen some literature on it as an

alternative pain medication.

Sometimes the opioid can initiate headaches.

I wish i could give you some other great advice but it sounds like in spite of

all the trials you are still hanging in there.

Harry S.

To: Stillsdisease

From: stillsman00@...

Date: Sat, 4 Aug 2012 09:40:27 -0700

Subject: Re: update

Hey Brother!

Man, I hate to hear of all this terrible luck you have been having! Seems like

if we didn't have bad luck we would have no luck at all......just damn! What a

crappy place to be in life! I do pray you will find some relief my friend!

Larry

Subject: update

To: " stillsdisease " <Stillsdisease >

Date: Saturday, August 4, 2012, 8:49 AM

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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Hi Kirk:

Man, I just don't know what to tell or say to you. You do have

the rottenest damn luck on earth. Wish to hell I knew something that could

help you because I know all the crap you have gone through and you sure

could use a break. Was glad to hear that your Family at least got to enjoy a

long awaited vacation. The only thing I can say is hang in there and keep on

trying like you have been. Would be nice to see you catch a break as you

sure deserve it. Take care my Friend and I hope your luck changes very soon!



Bob

Panama City, FL 32404

Please visit the International Stills Disease Foundation Inc. Web Site at

www.stillsdisease.org . Please make TAX DEDUCTIBLE Donations to the all

volunteer, International Stills Disease Foundation (ISDF), 1123 S. Kimbrel Ave.,

Panama City, FL 32404. Thanks!

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Guest guest

Hi Kirk:

Man, I just don't know what to tell or say to you. You do have

the rottenest damn luck on earth. Wish to hell I knew something that could

help you because I know all the crap you have gone through and you sure

could use a break. Was glad to hear that your Family at least got to enjoy a

long awaited vacation. The only thing I can say is hang in there and keep on

trying like you have been. Would be nice to see you catch a break as you

sure deserve it. Take care my Friend and I hope your luck changes very soon!



Bob

Panama City, FL 32404

Please visit the International Stills Disease Foundation Inc. Web Site at

www.stillsdisease.org . Please make TAX DEDUCTIBLE Donations to the all

volunteer, International Stills Disease Foundation (ISDF), 1123 S. Kimbrel Ave.,

Panama City, FL 32404. Thanks!

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