Re: I am NOT Lyme Disease/What works for you?

[Guest guest]

Boy, do I relate to that! I'm sure most of us here do.

I don't know what works for everyone else, but venting occasionally is a HUGE

relief... like a pressure cooker, I have to let off steam once in a while.

I don't always do real well with it, but I try to pick my battles. Ones I have

no chance of winning, like convincing people how sick I am after a reasonable

attempt to do so, go by the wayside. I have enough on my plate just trying to

cook dinner every day for my husband (who is gallantly working way too many

hours, feeling like garbage himself, to try to keep our mortgage paid). Lyme has

ruined many families and friendships through financial devastation and

non-belief. It's sad, but true.

If a doctor or other professional implies in the slightest way that they don't

believe me, they get replaced. (I learned a few years ago to ALWAYS get copies

of my medical records, since some doctors will tell a patient one thing and put

something totally different in their chart notes.) Finding a new doctor is a

battle in itself, but small potatoes to me compared with trying to change the

mind of someone who believes they know something they don't.

One battle I can't let go of is keeping hope alive. If I don't believe that

somehow, some day, I'm going to at least feel better... what's the point of

fighting at all? I try to accept where I'm at now (limitations, disabilities,

etc.) so that I can get through each day; but without hope, I don't know where

I'd be.

We talk a lot here about treatments, activism, and other very important

subjects. I'd love to hear how others cope with the challenges Jenni has

mentioned. Maybe I'll get some inspiration; I've struggled with that lately.

Though it feels like you're in the boat alone, Jenni--you're not!

(OR)

>

I am fighting many battles at once. I fight the disease. I am fighting for all

our rights on the political front. I am fighting to not lose our house because

we have had to choose to pay my medical over our mortgage. And I am fighting my

family who call me a hypochondriac. They do not know what I go through and they

do not want to understand. So how do I prove them wrong, or should I even try? I

am tired of fighting so many battles. I want less stress so that I may get well

and get back to a full life, hopefully some day. I put on a good face and try

not to look sick in public, but there are days it cannot be helped. I am sick

and I want to be well. I don't want to be known as the sick one either, but is

it too much to ask for a little respect and understanding?

>

> Jenni

>

[Guest guest]

I can totally relate and I'm not the one with Lyme, my 17 yo son is. people just

dont get it. He has been called lazy and told he needs to try harder so many

times!!! His original, and FORMER, Doctor told me that kids his age sleep alot

but we just shouldnt let them, oh yea. Luckily I found LLMD and he has been

getting treatment.

Currently, i am looking for a lwyer or advocate because the school is giving us

so much trouble. I have asked for IEP twice, never got it, he has not had

tutoring, they keep sending notices regarding his abscences...does it ever end?

Anne

From: vendetta33@...

Date: Tue, 9 Jun 2009 16:01:08 +0000

Subject: [ ] Re: I am NOT Lyme Disease/What works for you?

Boy, do I relate to that! I'm sure most of us here do.

I don't know what works for everyone else, but venting occasionally is a HUGE

relief... like a pressure cooker, I have to let off steam once in a while.

I don't always do real well with it, but I try to pick my battles. Ones I have

no chance of winning, like convincing people how sick I am after a reasonable

attempt to do so, go by the wayside. I have enough on my plate just trying to

cook dinner every day for my husband (who is gallantly working way too many

hours, feeling like garbage himself, to try to keep our mortgage paid). Lyme has

ruined many families and friendships through financial devastation and

non-belief. It's sad, but true.

If a doctor or other professional implies in the slightest way that they don't

believe me, they get replaced. (I learned a few years ago to ALWAYS get copies

of my medical records, since some doctors will tell a patient one thing and put

something totally different in their chart notes.) Finding a new doctor is a

battle in itself, but small potatoes to me compared with trying to change the

mind of someone who believes they know something they don't.

One battle I can't let go of is keeping hope alive. If I don't believe that

somehow, some day, I'm going to at least feel better... what's the point of

fighting at all? I try to accept where I'm at now (limitations, disabilities,

etc.) so that I can get through each day; but without hope, I don't know where

I'd be.

We talk a lot here about treatments, activism, and other very important

subjects. I'd love to hear how others cope with the challenges Jenni has

mentioned. Maybe I'll get some inspiration; I've struggled with that lately.

Though it feels like you're in the boat alone, Jenni--you're not!

(OR)

>

I am fighting many battles at once. I fight the disease. I am fighting for all

our rights on the political front. I am fighting to not lose our house because

we have had to choose to pay my medical over our mortgage. And I am fighting my

family who call me a hypochondriac. They do not know what I go through and they

do not want to understand. So how do I prove them wrong, or should I even try? I

am tired of fighting so many battles. I want less stress so that I may get well

and get back to a full life, hopefully some day. I put on a good face and try

not to look sick in public, but there are days it cannot be helped. I am sick

and I want to be well. I don't want to be known as the sick one either, but is

it too much to ask for a little respect and understanding?

>

> Jenni

>

[Guest guest]

To All,

This also is a daily strugle......... paying bills, sick children, sick myself,

I strugle everyday to cook, dishes, laundry - just the simpliest things so many

take for granted. Most days I can not answer the phone due to headaches, brain

in functioning correctly, not being able to say what I am thinking and cant find

the works - I do the best using email - even some of my family might find that

offensive I do what I can - I have learned that I can not make them understand -

as I tried to make my husband understand - it just doesnt work like that - but,

within time my husband started understanding because the school system for my

children took this disease more serious than him - without that I also was

fighting that battle - as far as extended family members........... we can give

them the info but can not make them believe - you have to let go and take that

effort and use it on yourself - I know it's hard to do but you have to learn how

- months ago I wrote about how much easier it would be to have cancer - only

because people feel compassion for you when they hear the word cancer - they

make you meals, clean, help with the kids, pray and again they give you

compassion - (PLEASE in no way am I wishing this on me or any of us but, with

that disease people give you understanding and COMPASSION) Cancer is just a

disease that I picked could be any other disease that is more understood - my

church gives meals, gas cards, etc to a family that has a family member with

cancer....... my girls and I are sick with lyme disease - they told me that the

church nurse would contact me - it's been six months........ nothing...........

What I do and what has helped me throught this terrible violent disease is read

Sylvia Browne and what she says about the after life - why we send ourself to

this earth - we all know that we have deaper spiritural growth than others with

going thru something like this - in fact I believe we sent ourself here to

battle this so inturn we ourself can become more spiritual in ourself for our

true life long journey....... just my way of getting through and making sence of

a senceless disease. Are my children stronger " people " because of this - YES!!

And then again - when the morgage is due and you have to make the choice to eat,

meds or pay the bills and your credit cards are already maxed out with high

interest rates........ you always have to remember and believe one day these

struggles will be in the past - and they will be - you just have to ride out the

storm because if you dont you will not get your rainbow!! And in time we will

all get our rainbows........

Praying for all of you!!

Diane

> >

> I am fighting many battles at once. I fight the disease. I am fighting for all

our rights on the political front. I am fighting to not lose our house because

we have had to choose to pay my medical over our mortgage. And I am fighting my

family who call me a hypochondriac. They do not know what I go through and they

do not want to understand. So how do I prove them wrong, or should I even try? I

am tired of fighting so many battles. I want less stress so that I may get well

and get back to a full life, hopefully some day. I put on a good face and try

not to look sick in public, but there are days it cannot be helped. I am sick

and I want to be well. I don't want to be known as the sick one either, but is

it too much to ask for a little respect and understanding?

> >

> > Jenni

> >

>

[Guest guest]

I don't know if problem-solving is called for when venting is what is

wanted, but like everyone else here, I've been in this pit. A few

things that helped:

1. I stopped trying to look better than I feel, and started being

honest about how I felt and what was wrong with me. It's amazing how

much energy we can divert into keeping up that wall of appearances. I

finally gave it up. If I feel like crap, I don't go out. If I have to

go out feeling like crap, I dress and groom as best I can -- and carry

a cane or bring my scooter to alert people to the fact that I am

abroad today as a disabled person. If I feel fine, I pull myself

completely together, and go out in my guise as a Normal Person. The

most important thing is to give people cues, so they can respond to me

appropriately.

It's absolutely amazing how much better I felt when I let go of

keeping up appearances and simply started existing as a Person With

Lyme, in all times and places. Even if they didn't really understand,

they cut me some slack. And I got to put that energy into other things

instead.

2. I tell people very forthrightly that it's Lyme. I'm a native

Californian who's old enough to remember when the gay community

started coming out to the world. Those of you who've seen the

extraordinary movie, " Milk, " will remember Harvey Milk's admonition to

San Francisco's gays that straights would never understand gay people

until they started coming out and telling the truth about who they

were. They had to find the courage to step out of the shadows and take

the initiative in educating the world. And they had to take themselves

seriously, so other people would, too.

I know that not all of us can do that (especially those of us trying

to hold down jobs) -- but those of us who can owe it to the rest of

the Lyme community to do so. When people ask me why I carry the cane,

or need to sit when everyone else is standing, or am using the

scooter, I look them in the eye tell them " I have Lyme Disease, which

is really bothering my knees today. " Or, " I have Lyme Disease, which

sometimes means I'm very low on energy. " I say it in a way that's

bold, forthright, friendly, and expects to be taken seriously. I'm not

a big woman, but I have a fair amount of physical presence, so most

people tend to take this with as much respect as I demand. If they

have questions or want to talk about it, I always engage that.

And every time I do, another person is getting an education as to what

a person with Lyme looks like. Lyme isn't a whiny hypochondriac. Lyme

is Sara, who is smart and cute and well-put-together and works for a

think tank in Washington. Whatever preconceptions they came in with,

this tends to shake them up a bit.

3. My boss and co-workers know I have Lyme, because sometimes my

issues interfere with my work. I'm lucky that they're pretty sensitive

to disability issues anyway (working for progressives is nice that

way), and that I only work part-time from home so I can get things

done on my own rickety, weird schedule. Finding work that fits the

rhythm of the illness is great, because it keeps despair at bay, makes

me feel useful, brings in some money, and holds my self-respect

intact. (FYI, y'all: I was on CSPAN for over an hour last week,

leading a panel at a conference held by my organization.)

4. I bought a copy of " Under Our Skin " and showed it to my family. We

can talk about Lyme until we're blue in the face, but a lot of people

won't believe in anything until they see it on TV. My trusty DVD is an

invaluable aid to explaining the disease and opening up a more

productive discussion with those closest to us whose lives are also

being upended by a disease they don't understand. If they're readers,

my copy of " Cure Unknown " might be lent out in addition, or instead.

Remember, too, that public information and attitudes about Lyme have

shifted radically in the past year, and will probably continue to

change for the better. Increasingly, I'm running into people who've

heard or read something about Lyme, and understand that it's a serious

condition that deserves their consideration and sympathy.

5. Most people aren't worth your efforts to convince them. If they

don't believe or respect you after reasonable, respectful

explanations, you are under no obligation to engage them any further.

(And yes, this includes family members.) YOU know you're sick. The

people who love you best know it, too. You have a life to get on with,

and anybody who's going to judge your situation or heap negativity on

your head is choosing not to help with that. So: you are well within

your rights to choose not to waste any more energy on them.

6. The best gift I got from this illness is that it forced me to get

my life priorities straight. My health, my marriage, my kids, my work

-- in that order. At any given moment, those are the things that

deserve whatever resources I can muster. Anything else needs to take a

back seat. I used to be a houseproud housekeeper; that's gone by the

wayside, because it's a lower priority than getting the rest I need,

reinforcing my bonds to my adorable husband, and giving my kids

whatever I can offer them. So be it. As long as that stuff's mostly

covered, it's still a life worth having.

Sara

On Jun 9, 2009, at 9:01 AM, transmedic007 wrote:

> Boy, do I relate to that! I'm sure most of us here do.

>

> I don't know what works for everyone else, but venting occasionally

> is a HUGE relief... like a pressure cooker, I have to let off steam

> once in a while.

>

> I don't always do real well with it, but I try to pick my battles.

> Ones I have no chance of winning, like convincing people how sick I

> am after a reasonable attempt to do so, go by the wayside. I have

> enough on my plate just trying to cook dinner every day for my

> husband (who is gallantly working way too many hours, feeling like

> garbage himself, to try to keep our mortgage paid). Lyme has ruined

> many families and friendships through financial devastation and non-

> belief. It's sad, but true.

>

> If a doctor or other professional implies in the slightest way that

> they don't believe me, they get replaced. (I learned a few years ago

> to ALWAYS get copies of my medical records, since some doctors will

> tell a patient one thing and put something totally different in

> their chart notes.) Finding a new doctor is a battle in itself, but

> small potatoes to me compared with trying to change the mind of

> someone who believes they know something they don't.

>

> One battle I can't let go of is keeping hope alive. If I don't

> believe that somehow, some day, I'm going to at least feel better...

> what's the point of fighting at all? I try to accept where I'm at

> now (limitations, disabilities, etc.) so that I can get through each

> day; but without hope, I don't know where I'd be.

>

> We talk a lot here about treatments, activism, and other very

> important subjects. I'd love to hear how others cope with the

> challenges Jenni has mentioned. Maybe I'll get some inspiration;

> I've struggled with that lately.

>

> Though it feels like you're in the boat alone, Jenni--you're not!

> (OR)

>

>

>>

> I am fighting many battles at once. I fight the disease. I am

> fighting for all our rights on the political front. I am fighting to

> not lose our house because we have had to choose to pay my medical

> over our mortgage. And I am fighting my family who call me a

> hypochondriac. They do not know what I go through and they do not

> want to understand. So how do I prove them wrong, or should I even

> try? I am tired of fighting so many battles. I want less stress so

> that I may get well and get back to a full life, hopefully some day.

> I put on a good face and try not to look sick in public, but there

> are days it cannot be helped. I am sick and I want to be well. I

> don't want to be known as the sick one either, but is it too much to

> ask for a little respect and understanding?

>>

>> Jenni

>>

>

>

>

>

> ------------------------------------

>

> 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]

Very well said, Sara! You have brought much insight to the problems I suffer

with also. I have avoided carrying my cane because my husband is embarrassed.

And, although I don't have as many problems as before I started treatment, I

should stop pretending I am well when I am so far from it. The greatest problem

for many of us is that we look good and no one can imagine that you can look so

good and be so sick. " It must be in her mind " I always tell people that if I

can't feel good, I might as well look good, but maybe that is the wrong

approach.

I also have wonderful people that I work with and for. If not for their

compassion, I would never be able to manage working, even though I dearly love

my job.

Thanks for a new look at the complicated problems we face.

>

> I don't know if problem-solving is called for when venting is what is

> wanted, but like everyone else here, I've been in this pit. A few

> things that helped:

>

> 1. I stopped trying to look better than I feel, and started being

> honest about how I felt and what was wrong with me. It's amazing how

> much energy we can divert into keeping up that wall of appearances. I

> finally gave it up. If I feel like crap, I don't go out. If I have to

> go out feeling like crap, I dress and groom as best I can -- and carry

> a cane or bring my scooter to alert people to the fact that I am

> abroad today as a disabled person. If I feel fine, I pull myself

> completely together, and go out in my guise as a Normal Person. The

> most important thing is to give people cues, so they can respond to me

> appropriately.

>

> It's absolutely amazing how much better I felt when I let go of

> keeping up appearances and simply started existing as a Person With

> Lyme, in all times and places. Even if they didn't really understand,

> they cut me some slack. And I got to put that energy into other things

> instead.

>

> 2. I tell people very forthrightly that it's Lyme. I'm a native

> Californian who's old enough to remember when the gay community

> started coming out to the world. Those of you who've seen the

> extraordinary movie, " Milk, " will remember Harvey Milk's admonition to

> San Francisco's gays that straights would never understand gay people

> until they started coming out and telling the truth about who they

> were. They had to find the courage to step out of the shadows and take

> the initiative in educating the world. And they had to take themselves

> seriously, so other people would, too.

>

> I know that not all of us can do that (especially those of us trying

> to hold down jobs) -- but those of us who can owe it to the rest of

> the Lyme community to do so. When people ask me why I carry the cane,

> or need to sit when everyone else is standing, or am using the

> scooter, I look them in the eye tell them " I have Lyme Disease, which

> is really bothering my knees today. " Or, " I have Lyme Disease, which

> sometimes means I'm very low on energy. " I say it in a way that's

> bold, forthright, friendly, and expects to be taken seriously. I'm not

> a big woman, but I have a fair amount of physical presence, so most

> people tend to take this with as much respect as I demand. If they

> have questions or want to talk about it, I always engage that.

>

> And every time I do, another person is getting an education as to what

> a person with Lyme looks like. Lyme isn't a whiny hypochondriac. Lyme

> is Sara, who is smart and cute and well-put-together and works for a

> think tank in Washington. Whatever preconceptions they came in with,

> this tends to shake them up a bit.

>

> 3. My boss and co-workers know I have Lyme, because sometimes my

> issues interfere with my work. I'm lucky that they're pretty sensitive

> to disability issues anyway (working for progressives is nice that

> way), and that I only work part-time from home so I can get things

> done on my own rickety, weird schedule. Finding work that fits the

> rhythm of the illness is great, because it keeps despair at bay, makes

> me feel useful, brings in some money, and holds my self-respect

> intact. (FYI, y'all: I was on CSPAN for over an hour last week,

> leading a panel at a conference held by my organization.)

>

> 4. I bought a copy of " Under Our Skin " and showed it to my family. We

> can talk about Lyme until we're blue in the face, but a lot of people

> won't believe in anything until they see it on TV. My trusty DVD is an

> invaluable aid to explaining the disease and opening up a more

> productive discussion with those closest to us whose lives are also

> being upended by a disease they don't understand. If they're readers,

> my copy of " Cure Unknown " might be lent out in addition, or instead.

>

> Remember, too, that public information and attitudes about Lyme have

> shifted radically in the past year, and will probably continue to

> change for the better. Increasingly, I'm running into people who've

> heard or read something about Lyme, and understand that it's a serious

> condition that deserves their consideration and sympathy.

>

> 5. Most people aren't worth your efforts to convince them. If they

> don't believe or respect you after reasonable, respectful

> explanations, you are under no obligation to engage them any further.

> (And yes, this includes family members.) YOU know you're sick. The

> people who love you best know it, too. You have a life to get on with,

> and anybody who's going to judge your situation or heap negativity on

> your head is choosing not to help with that. So: you are well within

> your rights to choose not to waste any more energy on them.

>

> 6. The best gift I got from this illness is that it forced me to get

> my life priorities straight. My health, my marriage, my kids, my work

> -- in that order. At any given moment, those are the things that

> deserve whatever resources I can muster. Anything else needs to take a

> back seat. I used to be a houseproud housekeeper; that's gone by the

> wayside, because it's a lower priority than getting the rest I need,

> reinforcing my bonds to my adorable husband, and giving my kids

> whatever I can offer them. So be it. As long as that stuff's mostly

> covered, it's still a life worth having.

>

> Sara

>

[Guest guest]

I thought a lot about this before I bought the scooter, and even

sought out some friends who are wheelchair-bound to talk to them about

how they managed socially. It was very important to me that I not

become invisible or marginalized; that I represent for Lyme in a way

that garnered respect and helped people listen; and that I empower

myself to live as much of my life as I was capable of. The scooter, in

particular, made it possible for me to spend a full day out of the

house at the fair, the mall, the park, or whatever -- it was huge in

getting me back out into the world. (I can highly recommend the Caddy,

which is cheap, fits into the trunk of my Prius and any taxi, and goes

on airplanes. Mine's been all over Manhattan, San Francisco, Ft.

Lauderdale, Seattle, Austin, and the Democratic National Convention in

Denver, and I'm flying to Salt Lake City with it next week. Best of

all: I can handle all by myself. It's an amazing little thing. You can

find them new on the Web for $1100, and on eBay or Craigslist used for

less than that.)

<http://www.planetmobility.com/store/scooters/wheelcare/caddy/

index.html>

What I finally realized is that the sight of someone who's well-

groomed and putting out all of the social cues that symbolize a

respectable member in good standing of the middle-or upper-middle-

class -- but is, at the same time, also bearing the marks of someone

who's disabled -- creates a dissonance that breaks down the

assumptions, which works in my favor. People want to think of

chronically ill people as being crazy and lazy. They're disheveled.

They smell bad. They're needy. Being pulled together, made-up, well-

coiffed, alert, friendly, and even funny flies in the face of those

assumptions. (Also, it does help my own mood considerably.) The cane

or scooter signal that this is a very normal person who's dealing with

something that's not normal, and needs some slack and support. I'm far

more likely to get that consideration if I don't go out looking like a

bag lady.

There's all kinds of really ugly, vicious class, gender, and ability

stereotyping that goes on around this issue, and it pisses me off when

I think too hard about it. But it is what it is. If people are going

to allow themselves to be blinded by stereotypes, then those of us who

are affected by them have every right to use their lazy thinking

against them to get what we need.

And shame on your husband for being embarrassed by your cane. It

sounds like he's still coming to terms with the " for worse " part of

the marriage vows. This is one of those places where stand-up partners

stand up and deliver. There's a tremendous amount of personal honor in

being that guy, and I hope he comes to the place where he can feel that.

Sara

On Jun 10, 2009, at 11:24 AM, catherinej6 wrote:

> Very well said, Sara! You have brought much insight to the problems

> I suffer with also. I have avoided carrying my cane because my

> husband is embarrassed. And, although I don't have as many problems

> as before I started treatment, I should stop pretending I am well

> when I am so far from it. The greatest problem for many of us is

> that we look good and no one can imagine that you can look so good

> and be so sick. " It must be in her mind " I always tell people that

> if I can't feel good, I might as well look good, but maybe that is

> the wrong approach.

>

> I also have wonderful people that I work with and for. If not for

> their compassion, I would never be able to manage working, even

> though I dearly love my job.

>

> Thanks for a new look at the complicated problems we face.

>

>

[Guest guest]

Sara,

AWESOME! And helpful. Thanks!

(OR)

>

> I don't know if problem-solving is called for when venting is what is

> wanted, but like everyone else here, I've been in this pit. A few

> things that helped:

>

> 1. I stopped trying to look better than I feel, and started being

> honest about how I felt and what was wrong with me. It's amazing how

> much energy we can divert into keeping up that wall of appearances. I

> finally gave it up. If I feel like crap, I don't go out. If I have to

> go out feeling like crap, I dress and groom as best I can -- and carry

> a cane or bring my scooter to alert people to the fact that I am

> abroad today as a disabled person. If I feel fine, I pull myself

> completely together, and go out in my guise as a Normal Person. The

> most important thing is to give people cues, so they can respond to me

> appropriately.

>

> It's absolutely amazing how much better I felt when I let go of

> keeping up appearances and simply started existing as a Person With

> Lyme, in all times and places. Even if they didn't really understand,

> they cut me some slack. And I got to put that energy into other things

> instead.

>

> 2. I tell people very forthrightly that it's Lyme. I'm a native

> Californian who's old enough to remember when the gay community

> started coming out to the world. Those of you who've seen the

> extraordinary movie, " Milk, " will remember Harvey Milk's admonition to

> San Francisco's gays that straights would never understand gay people

> until they started coming out and telling the truth about who they

> were. They had to find the courage to step out of the shadows and take

> the initiative in educating the world. And they had to take themselves

> seriously, so other people would, too.

>

> I know that not all of us can do that (especially those of us trying

> to hold down jobs) -- but those of us who can owe it to the rest of

> the Lyme community to do so. When people ask me why I carry the cane,

> or need to sit when everyone else is standing, or am using the

> scooter, I look them in the eye tell them " I have Lyme Disease, which

> is really bothering my knees today. " Or, " I have Lyme Disease, which

> sometimes means I'm very low on energy. " I say it in a way that's

> bold, forthright, friendly, and expects to be taken seriously. I'm not

> a big woman, but I have a fair amount of physical presence, so most

> people tend to take this with as much respect as I demand. If they

> have questions or want to talk about it, I always engage that.

>

> And every time I do, another person is getting an education as to what

> a person with Lyme looks like. Lyme isn't a whiny hypochondriac. Lyme

> is Sara, who is smart and cute and well-put-together and works for a

> think tank in Washington. Whatever preconceptions they came in with,

> this tends to shake them up a bit.

>

> 3. My boss and co-workers know I have Lyme, because sometimes my

> issues interfere with my work. I'm lucky that they're pretty sensitive

> to disability issues anyway (working for progressives is nice that

> way), and that I only work part-time from home so I can get things

> done on my own rickety, weird schedule. Finding work that fits the

> rhythm of the illness is great, because it keeps despair at bay, makes

> me feel useful, brings in some money, and holds my self-respect

> intact. (FYI, y'all: I was on CSPAN for over an hour last week,

> leading a panel at a conference held by my organization.)

>

> 4. I bought a copy of " Under Our Skin " and showed it to my family. We

> can talk about Lyme until we're blue in the face, but a lot of people

> won't believe in anything until they see it on TV. My trusty DVD is an

> invaluable aid to explaining the disease and opening up a more

> productive discussion with those closest to us whose lives are also

> being upended by a disease they don't understand. If they're readers,

> my copy of " Cure Unknown " might be lent out in addition, or instead.

>

> Remember, too, that public information and attitudes about Lyme have

> shifted radically in the past year, and will probably continue to

> change for the better. Increasingly, I'm running into people who've

> heard or read something about Lyme, and understand that it's a serious

> condition that deserves their consideration and sympathy.

>

> 5. Most people aren't worth your efforts to convince them. If they

> don't believe or respect you after reasonable, respectful

> explanations, you are under no obligation to engage them any further.

> (And yes, this includes family members.) YOU know you're sick. The

> people who love you best know it, too. You have a life to get on with,

> and anybody who's going to judge your situation or heap negativity on

> your head is choosing not to help with that. So: you are well within

> your rights to choose not to waste any more energy on them.

>

> 6. The best gift I got from this illness is that it forced me to get

> my life priorities straight. My health, my marriage, my kids, my work

> -- in that order. At any given moment, those are the things that

> deserve whatever resources I can muster. Anything else needs to take a

> back seat. I used to be a houseproud housekeeper; that's gone by the

> wayside, because it's a lower priority than getting the rest I need,

> reinforcing my bonds to my adorable husband, and giving my kids

> whatever I can offer them. So be it. As long as that stuff's mostly

> covered, it's still a life worth having.

>

> Sara

[Guest guest]

Sara,

You sound like a very together and strong woman. I wish I could be a little more

like that. I've had this disease for probably 22 years and was diagnosed 3.5

years ago. It isn't likely that my husband is ever going to come to terms with

my illness. It's a real sore spot in our otherwise happy marriage. But one bad

apple in this case can spoil the whole bunch. I've always been a pleaser and I

can't please him in this.

>

> > Very well said, Sara! You have brought much insight to the problems

> > I suffer with also. I have avoided carrying my cane because my

> > husband is embarrassed. And, although I don't have as many problems

> > as before I started treatment, I should stop pretending I am well

> > when I am so far from it. The greatest problem for many of us is

> > that we look good and no one can imagine that you can look so good

> > and be so sick. " It must be in her mind " I always tell people that

> > if I can't feel good, I might as well look good, but maybe that is

> > the wrong approach.

> >

> > I also have wonderful people that I work with and for. If not for

> > their compassion, I would never be able to manage working, even

> > though I dearly love my job.

> >

> > Thanks for a new look at the complicated problems we face.

> >

> >

>