Re: help! urgent need for support

[Guest guest]

> From: GreenEyez1978@...

> Subject: Re: left chest wall pain

>

> Hi,

> I have this pain too. For a long time I thought it was my heart and

> that really scared me. It was so severe that I couldn't move at all while the

> spasm was happening. I thought for sure I was going to have a heart attack

> But it turned out that the trigger point in my chest was getting irritated.

> The pain still hurts just as bad as before but it doesn't scare me like it

> used to.

>

Hi -- looks like this is very common!! I thought I was having a heart

attack at first too and now realize it is a spasm in my chest wall muscle.

> From: Hawkwyn1@...

> Subject: New member

>

> Hi all,

> Just a quick howdy to introduce myself <snip>

> Thanx in advance

>

Welcome, . I think you'll find the whole medication thing is really a

complicated maze when it comes to FM and different people, different stages

of the disease, etc. I know my body reacts violently with changes in

barometer -- sometimes headaches but mostly a lot of intense pain in my hips

and legs. Hang in there and keep reporting to your doc, testing different

meds when it seems appropriate. It seems like we are required to really

develop an acute intuition regarding what to try next, what isn't working,

etc.

>

> Subject: Chonic Debilitating Disease..............?

> ...that will only get worse? This is the first time I've hear

> someone say this.

> Deb

Hi Deb

It's really hard to hear this. But for some people it doesn't get worse, so

you just never know. I was told that too, but now after having it for 11

years, I've had 3 emergency surgeries, developed several other chronic

conditions (irritable bowel, anxiety disorder, gastritis, hiatal hernia,

ulcer, migraines, shingles) and have become disabled. Because of beurocratic

nitpicking they wouldn't award me regular Disability but only SSI, the one

that is income dependent. So if I make over a certain amount, they kick me

out. The only health insurance I have is Medicaid, again, income dependent.

The first several years I'd have remissions which seemed total and I would

be ecstatic thinking I was well; then it would hit again with a vengeance.

The remissions got shorter and further apart, and now it is 24/7.

************************

To everybody:

I used to do a lot of yoga and also some Tai Chi. I had to stop when the FM

got really bad. But I know it is good to exercise. My healthcare providers

(well one of them anyway) says, you get exercise every day by your

lifestyle... going up and down the stairs, reaching and bending, picking up,

laundry, cleaning, etc. I do stretches right out of a hot shower and that

seems to help with daytime pain, but at night sometimes it's so bad I can't

believe somebody can still be ALIVE and have this much pain. Anyway, I

signed up for a gentle Tai Chi class, hoping it will help me with balance

and exercise in a way that is different, and will help me keep some kind of

balance psychologically.... which brings me to...

Two weeks ago my fiance' came back from a hiking vacation he had taken with

his kids (I had told them to go without me, hoping that if they had that

time together they would see that my FM wasn't going to ruin all their fun

forever, as seemed to be the unvoiced concern).

Well, he returned and he informed me that he is leaving me because he wants

someone who can go hiking, skiing, scuba diving, on long drives, camping,

etc. and the compromises I offered just weren't enough and it is just too

hard living with somebody who has so many limitations. I was shocked beyond

measure. He has known for more than a year about my disease, we've been

living together for six months, and all that time he reassured me over and

over that he is committed to our relationship forever no matter what, he

helped me, found just the right way to massage me when I was in flare that

would actually stop the flare. I had conversation after conversation with

him about whether he really could deal with my FM or not, and he assured me

and assured me he could. He was there several times during my worst flare

ups, hospital visits, etc. and was a wonderful support and though it was

hard we seemed to work well as a team and I was bouncing back faster than I

ever had before.

He had given me a diamond engagement ring, and right up to before he left he

was saying he couldn't wait to get married and wanted to take me to the

beach for a vacation. In the meantime, he had convinced me to file

bankruptcy on my considerable medical debt, and because of my assets (I'm a

writer with several books) I had to file Chapter 13 which means I have to

make $700/mo payments to the court for 4 years and my credit, my safety net,

is completely destroyed for ten years. Because of the bankruptcy, he and the

lawyer told me to tell my publisher to withhold $10,000 from my royalty

check in the spring, which left me penniless until another comes in October,

and I don't know how much that will be but don't know how it could possibly

be enough to pay the $1450/mo rent plus $150/mo utilities, phone, cable,

etc. here. During all this time, my fiance' promised over and over (with NO

prompting from me) that he would take care of me, that all he wanted was for

me to do my art and my writing (even if I work really hard my income from

royalties and my artwork won't increase for 3-4 years). He promised me I

would never have to worry about survival again.

So now here I am, we are living for the time being as roommates basically. I

am shell shocked. I have no idea how I'm going to keep my home, which I

really need because it provides everything I need to do my work and bring

in some income. I am too sick to move -- even the thought of it throws me

into a panic attack. I made so many decisions based upon his promises to

take care of things; even my kids made decisions based on his promises. They

will both be moving away in a couple of months and there goes my emotional

support. I don't know what to do. My sleep disorder has kicked in again,

just when I had gotten it under control. So all day I worry and make lists

and agonize over what I'm going to do, and all night I work on projects I

already have going that will bring income in the future. All of this with my

heart in about a billion pieces.

I grilled and grilled him before we moved in together about whether he could

handle living with me and my disease. We had been basically living together,

he was great, he said no problem and insisted we move in together so he

could be there for me and I could " settle down, not worry any more about

survival, and that in itself will help you do better. " Which turned out to

be true. Everyone in my life said what a nice guy he seemed to be and that

I should take a chance, trust him, he really seems to love you, he's known

all about your illness for months and has never balked at it -- go for it.

You deserve to be happy. I thought so too. And I was. The happiest I've been

in many, many years.

My mind spins and spins. I don't know what to do, nobody in my life seems to

know what I should do, I feel as if I am just getting ready to be fed to the

wolves and there is nobody to help me, guide me, even hold my hand and help

me make any kind of plan. My family of origin has abandoned me -- not

surprisingly (mother an alcoholic, etc.) saying, " oh wow, sorry about that.

You must have done something to make this happen. "

Not knowing how much my royalty checks are going to be adds to the

uncertainty. And if I have to move to a tiny low income apartment I will

have to give up my life as an artist, which has just begun to grow and bring

in money... I just got a contract for a book from an art publishing company,

but I need the space this house provides in order to complete the book.

I know for sure that I will never be able to trust a man again, and I don't

want to have a relationship. At 50 I guess I'm just ready to give that up

anyway and devote myself to ME, my kids, and grandkids when they come along,

and my work. I think I can survive the intense heartbreak. But the financial

piece has me completely undone. No one would have ever suspected that I

shouldn't trust this man. Now he is just cold and his attitude is basically

" too bad for you -- you should have been watching out for yourself. "

Thank you for listening. I am trying as hard as I can not to just completely

lose my mind and go suicidal. I want to triumph. But I don't know what to do

and no one seems to even be there to help me brainstorm. People I thought

were friends have disappeared -- they don't seem to want to deal with it at

all. My greatest desire is to just go to sleep and not have to wake up.

Vimala