Thank you all

February 19, 2000

Christie,

I am glad you posted and gave us the details. This is right on

topic.

Nothing I can say to make it disappear, but I am worried about

you and the many I have come in contact with that have chronic

illness. Our coping mechanisms are maxed to the limit. Those

with children like in your situation, oh so overwhelming.

Abandonment by a spouse, especially when you become ill is almost

always impossible to deal with. We took vows to take care of each

other in sickness and in health. Now what? I do have close family

and friends, but I am one that never would go knocking on their

doors even as desperate as I had become. And then when you do go

try and find help and are rejected, well it is unbearable.

Your kids have kept you going and will keep you going somehow.

Maybe you could take a few days with them and go to the Woman's

underground shelter. Just get things together. That is if you

feel your husband won't sit down and listen to you. That nothing

more can be accomplished. Tell him you need his love, his hugs,

just something to show that he does care. If you have tried this,

try again.

I know your job as an MSW inside and out. I worked with MSW's in

discharging planning and there were those times just no one to

get in contact with for our patients. The Salvation Army helped

some, but only for short periods. Each situation so unique. I

know you had those situations and I know you know the rules. They

do stink. When you are used to helping others and then the role

reverses, it is the most desperate, lonely, fearful time of our

life. Being ill makes it even more unbearable.

I know their are others on the list who have had to be strong

when everything seemed to hit and keep hitting. Somehow, maybe

they have some idea of what else you can do to keep you

emotionally intact. I am glad you vented. It sounds like you

could use a break from some responsibilities and goals you have

tried to maintain. Re-group. Take care of number 1 first.

Warm thoughts for you,

Barb F. - MI

February 21, 2000

Christie, I can understand your delimma. You begin to feel so

rejected and then with no where to go, no assets, that makes for

very difficult times. It does sound like your husband doesn't

even want to try. So sad.

I have been going through this with my husband recently....past

two years. I sensed he did not love me anymore and asked him. I

went into the darkest hole and couldn't hardly get back out. I

have sons with children, so I kept those precious little ones in

my thoughts. I never told anyone, our sons, my brother about all

that was beginning to happen. I talked to my husband and we

talked about each other's faults. I believe he actually detested

me and I was a nusience to have around except for meals and sex.

And when you don't feel well, and he began to draw away and not

show he cared even a little I had visions of taking all my meds

at once. Then the kids would enter my mind. I could not do that

to them.

We have worked back to a much securer relationship after much

discussion and lots of tears from me. I gave him examples of what

others felt like and how really ill we are. And sometimes the

treatments make it even worse,

I know I was bitchy, but the longer he goofed off doing something

and didn't help me with some things in the house........well I

really blew up. After the shock of learning our marriage was not

good for him for past 10 yrs. or more, then going thru the hurt,

I now am at a point where I think we will be ok. But nothing is

the same as it was prior to me becoming ill. I was concerned if

he just wanted to stay together so not have to go thru and split

things up and makes moves. And the fact that " ALL " would know. I

still am not real happy. My doctor saved me thru this crisis.

Antidepressants and anti-anxiety agents. Plus I did not know

where to go. I thought and stewed about it. I don't want to stay

with someone who does not love me. I told him that after I began

to get angry. I am not in a position to leave, maybe if I ever

felt better I would have taken off. I told him I could not fight

this illness and for him too. It was just too much to bear. I

told him I needed someone to love me and I would try and find

that part in my life again. Since then, we are doing better. I

still am sad that I feel a loss of what we used to have, but for

now I think he is understanding more what type of life changes

and how I was affected by giving up my job, my independence, many

things that I loved to do. Whether things can be better then even

at our happiest, I have doubts, but at least our life together is

a lot better then it was. And I know, for everyone this does not

happen. Sometimes the mental abuse is much worse then the

physical abuse. We don't have to live this way. It does not sound

like your husband would even consider going to a marriage

counselor.

I think you should contact someone at the Woman's Shelter and at

least get some information. I know it is hard when you have

children. But at least you might be able to get some options to

choose from that would help get you on good steady ground for

decision making. I don't think going it alone will be enough

support for you. But we here on the list do support one another

and someone usually comes up with pretty good solutions.

Warm regards.........and hope you remember you are #1. And you

need to take care of you first. This dark area will pass and then

better decisions can be made. For you and your children's sake.

You need a fun diversion.

Barb F. - MI

February 21, 2000

Hi Christie,

Sorry to take so long to respond to you, I am grateful for the others

who did speak to you by phone and by mail. I am glad you had the

opportunity to vent and unload yourself of your sorrows....I must repeat

again....this kind of stuff is not OFF-TOPIC!!!! You posted in the right

place. I think besides the medical stuff, your biggest problem is the lack

of support you are getting from your spouse. Not just lack of help,

downright abuse. I wonder how it would be sometimes if the shoe was on the

other foot, when I hear of cases like yours. I am sure you would be there

for him if the tables were turned. I don't understand his calling you a

pimp because he has to work....didn't he work before you got sick??? Poor

Reid is in the same predicament, his wife, another Non-Lymie cannot deal

with the fact that he is ill, and she feels overburdened, and lets him know

at every opportunity. I only wish I could bang her head against your

husband's and knock some sense into them. I guess these comments are

neither here nor there, the problem is that you will certainly have no

chance of getting better (nor your son) living under these circumstances.

For some reason, when we are incapacitated and need to rely on others, we

lose our backbone, I bet if you were not sick and in a financial bind, you

would have put him out long ago. Mostly, my own spouse treats me decent,

still I find myself allowing him to get away with things I would never

permit, if I were not sick and dependent on him. Sometimes I joke that I am

a Stepford wife.

Your mother not understanding sure is another blow when you are so down.

I think you really need to talk to your doctor about the stress you are

dealing with at home, if your insurance permits, you need to see a therapist

or counselor, doesn't sound like your husband will go, so go by yourself so

you can learn how to deal with this. I have to agree you sure don't want to

hear any of those cutesy little sayings, like one day at a time, or this too

shall pass. This is killing you now. I understand how you could consider

suicide with things looking so bad now, but remember that is not an option,

what would your son do without you, he needs you, you sure wouldn't want

your husband dealing with his illness and raising him alone. God forbid!

I know how hard it is to deal with your list duties, let alone read all

the bragging some people can do unintentionally. Like the woman with the

maid....grrrrr. In her case, maybe it was intentional, anyone with half a

brain would know not to mention her good luck on a list where people are

having financial problems with a chronic illness. It just dawned on me,

that I have been announcing that I have finally been approved for IV, and

there are many on this list who would give their right arm to get some, but

are having an awful time....I should have known better to go on and on about

it, I know when I read of others good fortune and IV treatment, I would get

a twinge of jealousy. Not that I was not happy for them, just envious.

Anyway, sorry about that, proves I only have half a brain too, or so my PET

scan says anyway.....LOL!

I am glad to hear though that you are angry, and not totally depressed

with your situation, anger sometimes is a motivator that will help you to

realize you must do something other than put up with a husband that is doing

nothing but make your life miserable.

I don't understand why doctors or counselors would tell you not to talk

about your illness....unless they mean don't talk about it with those who

have no interest or can't help you. That's why this list is so great in my

opinion, only people in the same boat can identify, and I rarely if ever

tell anyone other than this list what is going on with me. Of course

sometimes I have to tell my husband, or my family, when they want me to do

things I can't do, but that's about the only time they need to know.

Christie, I know I haven't helped you one bit with this letter, I wish I

had a ton of money to send you so you could leave your unhappy home, I don't

have it, and no one else here does either, all any of us can offer you is

understanding and an ear when you need to rant. You really scared many of

us with your letter, Losing it....with Onelist down for the day, we were

pretty frantic, not being able to reach you. Please promise me that you

will not consider suicide again, or if you feel this low again that you will

call Carol or , or someone on the group. I would have you call me, but

it is a toll call and with financial problems being the way they are with

many of us, it's not a good idea.

There is now a chat option on Lyme-aid, I posted the information earlier,

you can talk to anyone there 24 hours a day, so please use it. Just post

that you want to chat on Lyme-aid, and whoever is available will chat with

you at: /chat/lyme-aid

I have rambled on enough, and for some reason (herxing?), I cannot sleep,

and have been up all damn night long, at least I got some more email letters

out to my legislators and will snail mail some more later today ....so

before I write something stupid, I will sign off now, but will definitely

keep in touch with you.

Huge Hugs and much love,

Marta

\

>From: " C.Tab. " <tab@...>

>

>Hi,

>

>I want to thank people for the replies to my post. It was off topic I

know,

>but was feeling too desperate. Also wrote my lupus list with same

>inquiries. I have hit a bottom in dealing with multiple illnesses of my

own

>and my sons. His health issues and my lack of physical and cognitive

>strength have simply done me in. The financial stresses and husband who

>punishes me for being ill also are major factor. I have never been a

>quitter, but am out of ideas now. I am grateful for these lists because

>there are people who can offer support who aren't as burnt out as others of

>us. But it is this lack in personal life that I cannot cope with right

now.

>

>For years I have done everything I could to stay healthy, taken every

>supplement there is, exercised as long as I could, worked, cared for house,

>kids - who have learning and medical problems, did volunteer work, and am

>MSW. I have been told that I am kind and have great insight and always had

>groups of friends. If I am such a good person, where are these people now?

>Why does my husband roll his eyes when I so much as walk into a room? He

>assualted my when I told him I had cardio issues and tells me I have no

work

>ethic. He calls me a pimp claiming that because of me he is forced to work

>and so therefore will not pay medical bills, or anything else that he

>doesn't need for himself only. I just want him to pay medical bills! He

>calls me a golddigger in response. I can no longer handle this hate he has

>toward me.

>

>Doctors say I am beyond their scope, to take antidepressents and exercise

>after telling them what activity does to me. It took 6 years to get SSD

but

>only after agreeing to give up back benefits. I filed for seperation from

>spouse, but cannot live on SSD of $400/mo. If I got SSI in addition that

>would give me another $40/mo. I would have no alimony because husband

>doesn't make enough although I would be entitled to it. Even my mother

>doesn't want to deal with me - says I should be better with all the medical

>treatments , that my spouse wouldn't bother her and that she wouldn't want

>his money I she were me. Well, she isn't me and she really sees nothing

>terribly wrong with his treatent of me.

>

>In the meantime, and why I posted,I can feel body failing and need to face

>reality. I want my son taken care of and his father is too irresponsible,

>and blames me for sons OCD, panic attacks, and about everything else too.

I

>have never done anything right according to him and while I know that

isn't

>true, I can't bear to hear it any longer. That and the flight of so called

>friends, doctors, social safety nets and family. I know others go through

>this - I see it all the time. I saw it while I was employed , and on lists

>where there are chronically ill people, and know I am not alone in this.

>

>For some of us, illness means isloation, poverty in addition to the normal

>grieving for lose of body. This is a society in which there is little

>political will to provide access to necessities as medical care, housing,

>transportation, etc. to those who become ill through no fault of their own.

>Disabled people are treated like criminals and I am tired of this

mentality.

>We are not criminals, we are ill but the two seem to be equal. Big reason

I

>am jaded is that I live in Michigan. We have one of the highest pollution,

>cancer and now lyme rates in the nation, and yet our state leads the nation

>in ecominic boom. We also have a govener - his name is Engler, who

has

>made a career of taking supports away from children, elderly and the

>disabled. This is a national trend, but our govenor is especially zealous.

>

>In the past if saw a problem I would work to fix it. Now I feel powerless

>to do anything, let alone fix anything. I want to be more active in

>advocacy, but most of the time I cannot get out of bed!

>I am feeling this loss more than anything.

>

>Also am tired of docs, counselors telling me not to talk about illness,

when

>if fact this has become something I can no longer hide. And then there are

>those who say things like be positive, look at a sunset, take day at a time

>- which I do agree with, but sometimes the cute little sayings make no

sense

>- like when you are fighting for your life. On my list, one woman kept

>writing in telling us about her illness which wasn't so bad - she spoke of

>expensive treatments, flights all over to docs, wonderful supportive

>husband, and just didn't know what she would do without her housekeeper.

>As listowner I kept my cool, but wanted to rip her lungs out. A couple of

>people did write in reminding that others were wondering where their next

>meal was coming from and to cut it out, and I was very grateful because I

>was ready to hurt this person!

>

>I know I sound angry. I have held it in for a while, as it is politcally

>incorrect for a disabled person to express any negativity. I seems we are

>supposed to be grateful, gracious and not make others uncomfortable with

our

>problems and needs. So, yes I am angry - for me, my kids and for all

others

>like me. I also live in fear as I never know what spouse will do next, and

>am so tired of being frightened in my own home. If I dare disagree I am

>punished in various ways as I mentioned. And survival is at the top of my

>fears.

>

>Again I know others have similiar issues in varying degrees and know I am

>not alone here. But none of us should have to deal with our culture who

>sees fit to slowly let us die off by not allowing access to necessities -

>especially medical care that could help up be productive again, families

and

>friends and even churches that reject us. And god help us if we break down

>- then we are just weak. I am tired of these attitudes. I don't want to

>dwell on my weaknesses, but I do wish for someone in my life who could just

>accept me and see something good in me. Then there is little need to dwell

>on the bad things, and it is horribly difficult not to worry about such

>things when you are fighting for your survival and losing. Depression,

>anger and fear are normal in such situations, and a kind word goes a long

>way. I tell spouse this, but I may as well talk to the air.....

>

>I have babbled and repeated myself and do not have the energy to clean it

>all up, so please forgive! I know long posts are difficult to read. I

also

>forgot that some here are on CFSx so I have really embarrassed myself!

>There are amazing crossover signs and symptoms and treatments that people

>deal with on both lists however. Quite amazing and overwhelming to the

>brainfogged!

>

>Thank you for listening and for the phone numbers. I talked with both

>and Carol until 10:30 and it is now midnight - it actually took my this

long

>to write this!

>

>Take care,

>Christie

>ICQ#24506295

February 23, 2000

christie.....i can relate to ur problems......U WILL HAVE LOVE IN UR LIFE....

we get what we need in this life .....not always as fast as we want it

though.....our needs are takin care of not always our wants i have found

out......mainly thru my illness....lyme can truly tear families apart....the

lack of money doctors bills.....and other stress's destroy relationships

easily...as for marriage......hte richer,better,and in health are easy

compared to the poorer, the worse , and in sickness......many on this list

have helped me thru my problems ....spouse wise....it is something that many

of us share on this board......it all boils down to......it is not easy to

live with a person who has a chronic illness.....that effects our

moods....that denies us even some small pleasures we use to share with our

spouses.....and one of the worst for me as i was always a big " planner " the

inability to make plans as i do not know from day to day how i will

feel.....and when u do back out as u are not feeling good u get " the

look " ....arghhhhh

my wife thrives on stress i think ......me with lyme ...well i just can't

handle it anymore.....i can no longer sweat the small stuff......and have

found that almost everything is just that small stuff......like i said.....i

can relate to what u r going thru as i am there myself......

Reid

December 23, 2001

Sheri,

We can all use some humor to help lighten the load. I hope you

have a happy and blessed holiday.

a

[ ] Thank you all

Good Morning,

I want to thank you all for your support (gee heard

that line before.) Yes some times a joke here and

there can be my release. I will also read that verse

shortly and thank you.

My daughter came back last night and being mentally

handicap I won't say anything to her, but for a few

hours last night with her my mind forgot the situation

and that was nice.

Mandy won't handle church today and than Monday night.

As we do gather Monday night know you all are in my

prayers as well.

I wish you all a wonderful holiday and a blessed new

year with only the good things in life.

My love and prayers to a wonderful group,

Sheri

__________________________________________________

July 18, 2002

Hi, Everyone,

Thank you so much to the people who wrote to me. , your advice was

wonderful and funny! a, , , Connie, Sue Ellen,

Donna, and anyone I may have left off thru brain fog -- thank you so much.

It really helped me to get your kind messages. I am keeping them all.

I had to rest most of today. I am feeling a bit stronger emotionally. I

am trying to think ab. the other people who support me, and to drown out

what this person said ab. my job and my future with kinder voices. Yeah,

, F - em! ha ha (anyone who knows me know that I never say curse

words!) But I sure like how you said it!

I'm not crying today. I have hope of getting a night's sleep and trying

again at the library tomorrow. I feel really, really weak - I think my

mind/body has no margin for feeling punched or gutted by someone w. this

disease! I just totally collapse, you know?

I will get back up. Thank you all, so very much. When I get to write my

acknowledgements, I'm going to remember you all. Thank you.

Healing to all,

Marie

July 19, 2002

Hi, Everyone,

I wanted to get on the email and say thank you to everyone who wrote to

me after I sent my thank you yesterday. I wasn't ignoring you - I just

hadn't rec'd your messages yet!

As my mom said today, being in touch with others who understand Lyme is

just going to be very important in my life. Thank you, all.

I was still smarting a bit from that awful criticism.... and I felt

wretched physically (can we all relate?) - but I did take myself to the

library today. I took my Vicodin (helps w. the nerve pain -- I'll be

going to BU's pain clinic soon, though) - and my thermos of green tea, and

a bit of chocolate, and I went to a different part of the library (sort of

a " new start " ) feeling, and I just started taking baby steps. In the end

I did some good work, made some good progress. (for me - LOL!)

The most important thing is that I feel like you got me over that first

step of reconnecting with my work; it is work that makes me happy when I

can focus on it, and not be distracted by feeling bad (or on the couch

waiting to feel better!) It was a good day of baby steps.

I just want to thank you again.

I have pain in my jaw and shoulder now, and Dr. D. says that is good! We

are " bringing out the Lyme. " What joy is mine. (ha ha -- with apologies

to Jane Austen, whose prose I am plundering)

Thank you all very much. I will keep you posted.

Healing to you all,

Marie

March 10, 2003

Good luck !

Can't wait to hear how the ped appt went.

> I wanted to thank everyone for there kind words and encouragement.

I

> have taken all of your input and advice to heart and plan to

approach

> Teegan's pediatrician about my concerns at her 1 year check up in a

> couple of weeks. I hope from what I learn hear I will be a bit more

> knowledgeable and able to get her care if needed.

>

> Thanks again, and I'll keep you all posted!

>

March 10, 2003

You are certainly welcome . Definitely keep us posted. Hey is

that your bday in your username? That would be this Friday if so, so

happy early bday if it is!

Debbie Abby's mom DOCGrad

MI

> I wanted to thank everyone for there kind words and encouragement. I

> have taken all of your input and advice to heart and plan to approach

> Teegan's pediatrician about my concerns at her 1 year check up in a

> couple of weeks. I hope from what I learn hear I will be a bit more

> knowledgeable and able to get her care if needed.

>

> Thanks again, and I'll keep you all posted!

>

February 25, 2005

Judi,

I will continue prayers for them. He needs to get some help, and

maybe there will be some hope with that faith.

I was in an abusive relationship for 4 years, and it was a nightmare,

I never want to go through again.

I'm so sorry that your daughter and grandchildren have to go through

this right now.

God bless,

Tawny

>

> I really appreciate the prayers and support! and Tom are

> leaning heavily on their faith right now, which in itself is a

> miracle for Tom as he used to depend more on his fists. The police

> have assured that they will be here to protect HER and the

> children. Ron and I spent the evening with the little ones while

> went to choir practice last night--she had a 6-person escort

to

> her car after practice! With God's (and your) help we will get

> through this.

>

> Blessings,

> Judi

February 25, 2005

Judi,

I will continue prayers for them. He needs to get some help, and

maybe there will be some hope with that faith.

I was in an abusive relationship for 4 years, and it was a nightmare,

I never want to go through again.

I'm so sorry that your daughter and grandchildren have to go through

this right now.

God bless,

Tawny

>

> I really appreciate the prayers and support! and Tom are

> leaning heavily on their faith right now, which in itself is a

> miracle for Tom as he used to depend more on his fists. The police

> have assured that they will be here to protect HER and the

> children. Ron and I spent the evening with the little ones while

> went to choir practice last night--she had a 6-person escort

to

> her car after practice! With God's (and your) help we will get

> through this.

>

> Blessings,

> Judi

February 25, 2005

Things like this are never pleasant. My prayers are for your family, and, as

it happens, a family in my local area. A mother and son were shot yesterday

as they were leaving the Federal Courthouse in Tyler, TX. It's been on the

national news so some of you might have heard of it. The husband was upset

because of child support problems, so he went to the courthouse and killed

his ex-wife and injured their 21 year old son, who were there to settle with

him on the child support. There were a few others injured and a 52 year-old

man was killed as he tried to protect the citizens from the assailant. A

pistol isn't a match for an automatic AK-47! After a chase out of town, the

truck was stopped and the man was shot and killed. It turned out that he was

wearing 2 different sets of kevlar. This can't happen to your family, it's

not supposed to.

Dennis

[ ] Thank you all

>

> I really appreciate the prayers and support! and Tom are

> leaning heavily on their faith right now, which in itself is a

> miracle for Tom as he used to depend more on his fists. The police

> have assured that they will be here to protect HER and the

> children. Ron and I spent the evening with the little ones while

> went to choir practice last night--she had a 6-person escort to

> her car after practice! With God's (and your) help we will get

> through this.

>

> Blessings,

> Judi

>

February 25, 2005