Re: 20 Years worth of Lyme and still going!!

[Guest guest]

Hi Rich, Thanks for sharing your story. I'm sure it will help

others who are suffering, too. You say that you have lost all your

skills, but you are still a great writer! Please do more of this.

I've had lyme for 15+ years and it is a battle to see the positive

in life some days. Take care,

cooky

>

> Hi,

> I thought I would write a note about my problems with lyme and

what

> I've been going through. Just a bunch of rambling I guess but here

> goes...

> I have had this disease for 20 years now. It has not only effected

> me buy also my family.

> I am very fortunate to have the greatest wife, son and parents

that

> stand with me in my

> battle with this horrible illness. I am disabled and can no longer

> work. I have many symptoms

> and these are just a few. I have memory and comprehension deficits

> along with vision, speech,

> motor skills, tremors in my right hand, light sensitive, severe

> muscle and joint pain, weakness,

> have had several mini stroke type episodes, word finding skills,

> depression, having trouble

> walking due to severe pain and swelling in my hips and knees,

using

> my hands, balance,

> bladder control and many more problems that I can go on and on

> about. This has made

> my life a living hell to put it mildly. I am on very heavy pain

meds

> just to be able to move

> and they hardly even help at all. I can't go anywhere or do

anything

> most of the time.

> The simple things that folks take for granted have become a major

> struggle for me.

> My wife is an angel who not only works, but she takes care of me

and

> is my voice to

> the doctors and handles everything along with daily life with our

16

> year old son, 2 dogs

> and a cat and balances this with work that has her busy 7 days a

> week. It has become

> a disease-by proxy for her and she suffers and I feel helpless to

do

> anything. I am getting

> worse all of the time and have have IV antibiotics through a

> cathider that was in my chest.

> I have lost my career, hobbies, doing things with my family and am

> mostly usless.

> I am a prisoner inside my own body with my windows being my eyes.

> The doctors that

> I have now are doing the best they can but having been ill this

long

> and with all of the damage

> done to my brain and body, they can only try to make me as

> comfortable as possible which

> really is not very good at all, but they are trying. It's been a

> very hard road but I am still

> here. Maybe reading this will help others see that they are not

> alone. Being a Lyme

> sufferer is like being a small fish in a tank of all sharks.

There's

> not a lot of hope.

> But you can never lose hope. I tell myself this and I go day to

day,

> love my wife

> and son, and keep going. It beats the alternative. Well that's it

> for now.

> Thanks,

> Rich

>

[Guest guest]

Rich:

Thank you for sharing your story. I too agree that you can write

and you can share and you call out to others who suffer and help the with

the real eyes and ear of one who has been there and is still there like so

very many and there will be many more. We are a big family who love each

other through compassion, sympathy, suffering and yes, hope and

faith. Rich - keep your story out there and share it more with anyone you

can. Let the world know we are all together in this and non of us are

alone, because we have each other. Glen from NJ

At 11:53 AM 5/26/2006 +0000, you wrote:

>Hi Rich, Thanks for sharing your story. I'm sure it will help

>others who are suffering, too. You say that you have lost all your

>skills, but you are still a great writer! Please do more of this.

>I've had lyme for 15+ years and it is a battle to see the positive

>in life some days. Take care,

>cooky

>

>

> >

> > Hi,

> > I thought I would write a note about my problems with lyme and

>what

> > I've been going through. Just a bunch of rambling I guess but here

> > goes...

> > I have had this disease for 20 years now. It has not only effected

> > me buy also my family.

> > I am very fortunate to have the greatest wife, son and parents

>that

> > stand with me in my

> > battle with this horrible illness. I am disabled and can no longer

> > work. I have many symptoms

> > and these are just a few. I have memory and comprehension deficits

> > along with vision, speech,

> > motor skills, tremors in my right hand, light sensitive, severe

> > muscle and joint pain, weakness,

> > have had several mini stroke type episodes, word finding skills,

> > depression, having trouble

> > walking due to severe pain and swelling in my hips and knees,

>using

> > my hands, balance,

> > bladder control and many more problems that I can go on and on

> > about. This has made

> > my life a living hell to put it mildly. I am on very heavy pain

>meds

> > just to be able to move

> > and they hardly even help at all. I can't go anywhere or do

>anything

> > most of the time.

> > The simple things that folks take for granted have become a major

> > struggle for me.

> > My wife is an angel who not only works, but she takes care of me

>and

> > is my voice to

> > the doctors and handles everything along with daily life with our

>16

> > year old son, 2 dogs

> > and a cat and balances this with work that has her busy 7 days a

> > week. It has become

> > a disease-by proxy for her and she suffers and I feel helpless to

>do

> > anything. I am getting

> > worse all of the time and have have IV antibiotics through a

> > cathider that was in my chest.

> > I have lost my career, hobbies, doing things with my family and am

> > mostly usless.

> > I am a prisoner inside my own body with my windows being my eyes.

> > The doctors that

> > I have now are doing the best they can but having been ill this

>long

> > and with all of the damage

> > done to my brain and body, they can only try to make me as

> > comfortable as possible which

> > really is not very good at all, but they are trying. It's been a

> > very hard road but I am still

> > here. Maybe reading this will help others see that they are not

> > alone. Being a Lyme

> > sufferer is like being a small fish in a tank of all sharks.

>There's

> > not a lot of hope.

> > But you can never lose hope. I tell myself this and I go day to

>day,

> > love my wife

> > and son, and keep going. It beats the alternative. Well that's it

> > for now.

> > Thanks,

> > Rich

> >

>

>

>

>

>

>

>

>

>For free up to date information about Lyme disease and the known

>co-infections delivered to your email address see:

>Robynns_Lyme_List/

>

>

[Guest guest]

I want to add my voice to Glen's & Cooky's. Thank you for sharing your

story. I'm not as sick as you are, but I do know what it's like to

have support from family, friends, and co-workers.

And I, too, think you're a good writer and should share your story

with others. I've made no secret of my illness and it has had the

effect of making everyone who knows me much more careful.

Please continue to write to us and let us know how you're doing!

Jessie

> >Hi Rich, Thanks for sharing your story. I'm sure it will help

> >others who are suffering, too. You say that you have lost all your

> >skills, but you are still a great writer! Please do more of this.

> >I've had lyme for 15+ years and it is a battle to see the positive

> >in life some days. Take care,

> >cooky

> >

>

[Guest guest]

Hi ,

I sent you a private email. I just wanted to thank you...You see a

few years ago I was in the very same place that you are in.

This morning I was feeling depressed for no good reason. Then I read

your email and it brought me back to the same place where you are

today...Some how you reminded me of how much better a place I am in

now.

I am sending you a prayer, one for your family as well.

Warmly,

Sudylo RN/CHT

http://www.geocities.com/boejr1/

>

> Hi,

> I thought I would write a note about my problems with lyme and what

> I've been going through. Just a bunch of rambling I guess but here

> goes...

> I have had this disease for 20 years now. It has not only effected

> me buy also my family.

> I am very fortunate to have the greatest wife, son and parents that

> stand with me in my

> battle with this horrible illness. I am disabled and can no longer

> work. I have many symptoms

> and these are just a few. I have memory and comprehension deficits

> along with vision, speech,

> motor skills, tremors in my right hand, light sensitive, severe

> muscle and joint pain, weakness,

> have had several mini stroke type episodes, word finding skills,

> depression, having trouble

> walking due to severe pain and swelling in my hips and knees, using

> my hands, balance,

> bladder control and many more problems that I can go on and on

> about. This has made

> my life a living hell to put it mildly. I am on very heavy pain

meds

> just to be able to move

> and they hardly even help at all. I can't go anywhere or do

anything

> most of the time.

> The simple things that folks take for granted have become a major

> struggle for me.

> My wife is an angel who not only works, but she takes care of me

and

> is my voice to

> the doctors and handles everything along with daily life with our

16

> year old son, 2 dogs

> and a cat and balances this with work that has her busy 7 days a

> week. It has become

> a disease-by proxy for her and she suffers and I feel helpless to

do

> anything. I am getting

> worse all of the time and have have IV antibiotics through a

> cathider that was in my chest.

> I have lost my career, hobbies, doing things with my family and am

> mostly usless.

> I am a prisoner inside my own body with my windows being my eyes.

> The doctors that

> I have now are doing the best they can but having been ill this

long

> and with all of the damage

> done to my brain and body, they can only try to make me as

> comfortable as possible which

> really is not very good at all, but they are trying. It's been a

> very hard road but I am still

> here. Maybe reading this will help others see that they are not

> alone. Being a Lyme

> sufferer is like being a small fish in a tank of all sharks.

There's

> not a lot of hope.

> But you can never lose hope. I tell myself this and I go day to

day,

> love my wife

> and son, and keep going. It beats the alternative. Well that's it

> for now.

> Thanks,

> Rich

>

[Guest guest]

Hi Rich

Thank you so much for sharing your story with us. I have to say I am very

very sorry you're as sick as you are yet in a way glad to see there is

someone out there like me and I'm not alone. I've been sick for 15 years,

will be 16 this Dec and like you I am a prisoner of my own body. I have done

orals and IVS for years, been treated for coinfection all to no avail. I am

also pretty much useless and can't really go anywhere or do anything. My

biggest problems along with many others in the last 3 years is I can't

swallow much food anymore. I have severe stomach damage but also there is

something wrong with the muscles in my throat and it makes it very hard to

swallow. Most of my food when I can get something in is mush and liquids. I

ve have hit an alltime weight low of 87 pounds. As of right now my MD is

trying to help and make me as comfy as possible but he's as confused as I am

I am married, 2nd time around, 1st one fell apart due to my illness. My

husband and I have no children (due to Lyme).. We have a housefull of dogs

but my husband is also disabled with a back injury and he takes good care of

me and I am blessed in that regard.

Thanks again for sharing. If anytime you'd like to talk off list please

email me anytime AriesAngel70@...

Robyn

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-- [ ] 20 Years worth of Lyme and still going!!

Hi,

I thought I would write a note about my problems with lyme and what

I've been going through. Just a bunch of rambling I guess but here

goes...

I have had this disease for 20 years now. It has not only effected

me buy also my family.

[Guest guest]

I am always humbled by the strength and forebearance of Lymies who

have lived with the disease for decades. It always helps me to put my

condition into perspective.

Thank you, Robyn & Rich, for telling your stories with such

clear-eyed, straightforward honesty.

Jessie

>

>

> Hi Rich

>

> Thank you so much for sharing your story with us. I have to say I am

very

> very sorry you're as sick as you are yet in a way glad to see there is

> someone out there like me and I'm not alone. I've been sick for 15

years,

> will be 16 this Dec and like you I am a prisoner of my own body. I

have done

> orals and IVS for years, been treated for coinfection all to no

avail. I am

> also pretty much useless and can't really go anywhere or do anything. My

> biggest problems along with many others in the last 3 years is I can't

> swallow much food anymore. I have severe stomach damage but also

there is

> something wrong with the muscles in my throat and it makes it very

hard to

> swallow. Most of my food when I can get something in is mush and

liquids. I

> ve have hit an alltime weight low of 87 pounds. As of right now my MD is

> trying to help and make me as comfy as possible but he's as confused

as I am

> I am married, 2nd time around, 1st one fell apart due to my illness. My

> husband and I have no children (due to Lyme).. We have a housefull

of dogs

> but my husband is also disabled with a back injury and he takes good

care of

> me and I am blessed in that regard.

>

> Thanks again for sharing. If anytime you'd like to talk off list please

> email me anytime AriesAngel70@...

>

> Robyn

>

>

[Guest guest]

Rich,

It's been 20 years for me too. I am also pretty much totally

disabled. I too have felt the things you've written. I still hold

out hope that I can get better, maybe never 100%, but better. I've

been in a wheelchair for the last 17 of the 20 years and would be

thrilled to just walk again. Hang in there, I think there is still

hope for all of us!!!

Kathy

>

> Hi,

> I thought I would write a note about my problems with lyme and

what

> I've been going through. Just a bunch of rambling I guess but here

> goes...

> I have had this disease for 20 years now. It has not only effected

> me buy also my family.

> I am very fortunate to have the greatest wife, son and parents

that

> stand with me in my

> battle with this horrible illness. I am disabled and can no longer

> work. I have many symptoms

> and these are just a few. I have memory and comprehension deficits

> along with vision, speech,

> motor skills, tremors in my right hand, light sensitive, severe

> muscle and joint pain, weakness,

> have had several mini stroke type episodes, word finding skills,

> depression, having trouble

> walking due to severe pain and swelling in my hips and knees,

using

> my hands, balance,

> bladder control and many more problems that I can go on and on

> about. This has made

> my life a living hell to put it mildly. I am on very heavy pain

meds

> just to be able to move

> and they hardly even help at all. I can't go anywhere or do

anything

> most of the time.

> The simple things that folks take for granted have become a major

> struggle for me.

> My wife is an angel who not only works, but she takes care of me

and

> is my voice to

> the doctors and handles everything along with daily life with our

16

> year old son, 2 dogs

> and a cat and balances this with work that has her busy 7 days a

> week. It has become

> a disease-by proxy for her and she suffers and I feel helpless to

do

> anything. I am getting

> worse all of the time and have have IV antibiotics through a

> cathider that was in my chest.

> I have lost my career, hobbies, doing things with my family and am

> mostly usless.

> I am a prisoner inside my own body with my windows being my eyes.

> The doctors that

> I have now are doing the best they can but having been ill this

long

> and with all of the damage

> done to my brain and body, they can only try to make me as

> comfortable as possible which

> really is not very good at all, but they are trying. It's been a

> very hard road but I am still

> here. Maybe reading this will help others see that they are not

> alone. Being a Lyme

> sufferer is like being a small fish in a tank of all sharks.

There's

> not a lot of hope.

> But you can never lose hope. I tell myself this and I go day to

day,

> love my wife

> and son, and keep going. It beats the alternative. Well that's it

> for now.

> Thanks,

> Rich

>

[Guest guest]

Hi Rich,

Isn't it funny how all our stories are so similar? I have had Lyme

for 18 years now, and have actually managed to keep working, although

I may not be for long. The first 14 years that I had Lyme, I was

doing fairly well, but I really believe that was due to my job. I

had a very physical job and I probably walked anywhere from 10 to 20

miles a day and I was always in a hurry. I watered plants for a

living and carried around 40 pounds of water. And, I did pretty

good, but then my hands were wearing out and I was really too old to

keep doing it, so when I was about 40, I had to stop doing that type

of work. I went to work at an office job, however I did keep

exercising as much as I could because I had the sneaky suspicion that

all the exercise was the only thing keeping me from being really

sick! Of course about a year after I started working the office job,

I starting getting really sick and have gone down from there. I am

still working, however I do not think I will be for much longer. I

am so grateful for my job because they work with me on my schedule

and everything! I am just so deprsessed that I am so tired and sick

by the weekend, that all I can do is sleep. My husband is having

real problems believing that I am that sick! I do not know what to

tell him, and he does not want me to go on disability either. He is

just worried about bills, mortgage, etc, like I am not! I have heard

horror stories about people trying to get disabilitiy, and they have

to hire lawyers and wait for months or years, and I just cannot

afford that! Anyway, I wish the best of luck for you Rich, may God

bless you and get you back on your feet to a healthy state!!

>

> Hi,

> I thought I would write a note about my problems with lyme and what

> I've been going through. Just a bunch of rambling I guess but here

> goes...

> I have had this disease for 20 years now. It has not only effected

> me buy also my family.

> I am very fortunate to have the greatest wife, son and parents that

> stand with me in my

> battle with this horrible illness. I am disabled and can no longer

> work. I have many symptoms

> and these are just a few. I have memory and comprehension deficits

> along with vision, speech,

> motor skills, tremors in my right hand, light sensitive, severe

> muscle and joint pain, weakness,

> have had several mini stroke type episodes, word finding skills,

> depression, having trouble

> walking due to severe pain and swelling in my hips and knees, using

> my hands, balance,

> bladder control and many more problems that I can go on and on

> about. This has made

> my life a living hell to put it mildly. I am on very heavy pain

meds

> just to be able to move

> and they hardly even help at all. I can't go anywhere or do

anything

> most of the time.

> The simple things that folks take for granted have become a major

> struggle for me.

> My wife is an angel who not only works, but she takes care of me

and

> is my voice to

> the doctors and handles everything along with daily life with our

16

> year old son, 2 dogs

> and a cat and balances this with work that has her busy 7 days a

> week. It has become

> a disease-by proxy for her and she suffers and I feel helpless to

do

> anything. I am getting

> worse all of the time and have have IV antibiotics through a

> cathider that was in my chest.

> I have lost my career, hobbies, doing things with my family and am

> mostly usless.

> I am a prisoner inside my own body with my windows being my eyes.

> The doctors that

> I have now are doing the best they can but having been ill this

long

> and with all of the damage

> done to my brain and body, they can only try to make me as

> comfortable as possible which

> really is not very good at all, but they are trying. It's been a

> very hard road but I am still

> here. Maybe reading this will help others see that they are not

> alone. Being a Lyme

> sufferer is like being a small fish in a tank of all sharks.

There's

> not a lot of hope.

> But you can never lose hope. I tell myself this and I go day to

day,

> love my wife

> and son, and keep going. It beats the alternative. Well that's it

> for now.

> Thanks,

> Rich

>