Re: Hi , I am new too and I can totally relate,

[Guest guest]

Hello Ebony,

Thank you so much for your reply. I am so sorry to hear about

your daughter's passing. What was her name? Why did she die? This

first year must have been so anguishing for you and yet - look at

what you are accomplishing! You are actually working! You are NOT all

curled up in an immobile ball of depression, although nobody would

blame you Ebony. You are a very strong woman. But it get's wary, even

for strong women, doesn't it? Pain just by itself can suck the life

juices right out of you and make you old before your time. Then there

is the fatigue. And nobody else but a fellow RA'er or other auto-

immuner know that level of fatigue!

It's so great that there are such loving, giving, understanding

people we can come to here, isnt' it? I just feel so blessed by the

people here who have responded to my plea of " hey, I need a friend " .

I have gotten some posts and some personal emails that have really

helped me stay grounded these last few days. Just knowing you all are

out there, and we have a strong common bond.

Sorry, kinda babbling at this point...it's been a very long day and

it's late. Welcome, Ebony! Feel free to email me anytime. Hugs,

> > Dear RA Group;

> > I probably belong here as well as anywhere else...if you all

> will

> > have me that is! I have Lupus, OA, Osteopenia, Post Thyroid CA,

> > Fibromyalgia, severe sleep apnea, ideopathic sinus tachycardia,

> and

> > of course- Depression! It sounds like a lot when you write it all

> > down, but as you all probably know, a lot of this stuff goes

> > together, and just makes for one different and difficult life!

> > Different from who we used to be, and who we wanted to be.

> Difficult

> > because it's hard...to give up your career, and vitality, and

> > independence in some cases. It's hard to live with chronic pain,

> > and " living " the " claim " years: You know- trying to get your due

> via

> > SS, employer-based insurance, VA comp, etc and constantly having

> > to " prove " your disability instead of being able to do

> the " healthy "

> > thing, and get on with this different and difficult life.

> > I was DX was LUPUS in 1994, after years of severe arthralgias,

> > a " fetal " demise @ 20 weeks, petechial rashes, and then the big

> guns:

> > Brain MRI showing multiple lacunar infarcts, and positive lab

work-

>

> > once they finally started looking in the right direction. Have

had

> > Fibromyalgia since 1989- before it was even called " fibro " (it

was

> > called various forms of 'myositis'). Thyroid Cancer in 1995. Had

> to

> > finally cease and desist my beloved (and much grieved loss of my)

> > Nurse/Manager position in 1999, and have been trying to get SS

and

> VA

> > comp since. Actually, been trying to get VA comp since 1991, when

> I

> > got out of the AF Nurse Corps during Operation Desert Storm.

> Finally

> > after 14 years- I am getting evaluated by the VA MD's (5

different

> > appointments, no less!)during the next 3 weeks. So I guess I'm a

> > little more depressed and anxious, and possibly cynnical,than

> usual-

> > because I just dont have ANY faith in the VA system doing the

> right

> > thing, and I just can't deal with that.

> > Anyway- thats a little bit about me. I look forward to

getting

> to

> > know you all.

[Guest guest]

Hello Ebony,

Thank you so much for your reply. I am so sorry to hear about

your daughter's passing. What was her name? Why did she die? This

first year must have been so anguishing for you and yet - look at

what you are accomplishing! You are actually working! You are NOT all

curled up in an immobile ball of depression, although nobody would

blame you Ebony. You are a very strong woman. But it get's wary, even

for strong women, doesn't it? Pain just by itself can suck the life

juices right out of you and make you old before your time. Then there

is the fatigue. And nobody else but a fellow RA'er or other auto-

immuner know that level of fatigue!

It's so great that there are such loving, giving, understanding

people we can come to here, isnt' it? I just feel so blessed by the

people here who have responded to my plea of " hey, I need a friend " .

I have gotten some posts and some personal emails that have really

helped me stay grounded these last few days. Just knowing you all are

out there, and we have a strong common bond.

Sorry, kinda babbling at this point...it's been a very long day and

it's late. Welcome, Ebony! Feel free to email me anytime. Hugs,

> > Dear RA Group;

> > I probably belong here as well as anywhere else...if you all

> will

> > have me that is! I have Lupus, OA, Osteopenia, Post Thyroid CA,

> > Fibromyalgia, severe sleep apnea, ideopathic sinus tachycardia,

> and

> > of course- Depression! It sounds like a lot when you write it all

> > down, but as you all probably know, a lot of this stuff goes

> > together, and just makes for one different and difficult life!

> > Different from who we used to be, and who we wanted to be.

> Difficult

> > because it's hard...to give up your career, and vitality, and

> > independence in some cases. It's hard to live with chronic pain,

> > and " living " the " claim " years: You know- trying to get your due

> via

> > SS, employer-based insurance, VA comp, etc and constantly having

> > to " prove " your disability instead of being able to do

> the " healthy "

> > thing, and get on with this different and difficult life.

> > I was DX was LUPUS in 1994, after years of severe arthralgias,

> > a " fetal " demise @ 20 weeks, petechial rashes, and then the big

> guns:

> > Brain MRI showing multiple lacunar infarcts, and positive lab

work-

>

> > once they finally started looking in the right direction. Have

had

> > Fibromyalgia since 1989- before it was even called " fibro " (it

was

> > called various forms of 'myositis'). Thyroid Cancer in 1995. Had

> to

> > finally cease and desist my beloved (and much grieved loss of my)

> > Nurse/Manager position in 1999, and have been trying to get SS

and

> VA

> > comp since. Actually, been trying to get VA comp since 1991, when

> I

> > got out of the AF Nurse Corps during Operation Desert Storm.

> Finally

> > after 14 years- I am getting evaluated by the VA MD's (5

different

> > appointments, no less!)during the next 3 weeks. So I guess I'm a

> > little more depressed and anxious, and possibly cynnical,than

> usual-

> > because I just dont have ANY faith in the VA system doing the

> right

> > thing, and I just can't deal with that.

> > Anyway- thats a little bit about me. I look forward to

getting

> to

> > know you all.

[Guest guest]

Ebony,

Wow you sure have been through a lot as of late, My prayers are with you. You

were right when you say RA is not marriage friendly. My hubby knew before we

married and he still has a hard time with it. He just cant understand no matter

how much he wants to. Thats why this group is so great we all totally understand

what each other is going through.Even tho we may not always post a response to

each post (WE hurt too!!)we still care and understand. I hope you have a great

day.

Trudy

stillbreathing29 <stillbreathing29@...> wrote:

as I am sure every one here can on some level.

I have RA with a " high lupus count " whatever that means. I am

never told I have lupus right out but I feel the so-called high

count makes the RA a little on the extreme and severe side if that

is possible.

I am feeling a little down too and thought I would come here to chat

with the group. It can be a bit much to live this new chronically

ill life. Even though I am married, the condition is not very

marriage friendly, so still seek the company of other RA'ers.

I didn't get as far as you got with the career but had very high

hopes. I was a late bloomer, working in a hospital, training as

EMT, preparing for physician testings at a school in LA. I didn't

get to applying. As soon as I finished the EMT training I got RA.

So, I trained as an medical transcriptionist, so that I would have

something I could do from home and have been trying to complete a

BA's ever since while caring for my daughter who regressed at 2

years (passed away at 5/14/04 - age 11). It has been a long journey

but I am still fighting and hanging in there. It is all any of us

can do, right?

I was turned down for SS employment based 5 times. I had the

assistance of a lawyer. Finally, just started looking for other

ways to survive. I took out student loans, but school actually

brings on more flares. I guess the stress of it, not sure. I won't

give up though.

At this point, I am not all that interested in the SS, just wish

they had a program that at least helped us to retrain for something

we can do with RA. Until then, I will keep working as a

transcriptionist.

love and peace,

Ebony

> Dear RA Group;

> I probably belong here as well as anywhere else...if you all

will

> have me that is! I have Lupus, OA, Osteopenia, Post Thyroid CA,

> Fibromyalgia, severe sleep apnea, ideopathic sinus tachycardia,

and

> of course- Depression! It sounds like a lot when you write it all

> down, but as you all probably know, a lot of this stuff goes

> together, and just makes for one different and difficult life!

> Different from who we used to be, and who we wanted to be.

Difficult

> because it's hard...to give up your career, and vitality, and

> independence in some cases. It's hard to live with chronic pain,

> and " living " the " claim " years: You know- trying to get your due

via

> SS, employer-based insurance, VA comp, etc and constantly having

> to " prove " your disability instead of being able to do

the " healthy "

> thing, and get on with this different and difficult life.

> I was DX was LUPUS in 1994, after years of severe arthralgias,

> a " fetal " demise @ 20 weeks, petechial rashes, and then the big

guns:

> Brain MRI showing multiple lacunar infarcts, and positive lab work-

> once they finally started looking in the right direction. Have had

> Fibromyalgia since 1989- before it was even called " fibro " (it was

> called various forms of 'myositis'). Thyroid Cancer in 1995. Had

to

> finally cease and desist my beloved (and much grieved loss of my)

> Nurse/Manager position in 1999, and have been trying to get SS and

VA

> comp since. Actually, been trying to get VA comp since 1991, when

I

> got out of the AF Nurse Corps during Operation Desert Storm.

Finally

> after 14 years- I am getting evaluated by the VA MD's (5 different

> appointments, no less!)during the next 3 weeks. So I guess I'm a

> little more depressed and anxious, and possibly cynnical,than

usual-

> because I just dont have ANY faith in the VA system doing the

right

> thing, and I just can't deal with that.

> Anyway- thats a little bit about me. I look forward to getting

to

> know you all.

[Guest guest]

Ebony,

Wow you sure have been through a lot as of late, My prayers are with you. You

were right when you say RA is not marriage friendly. My hubby knew before we

married and he still has a hard time with it. He just cant understand no matter

how much he wants to. Thats why this group is so great we all totally understand

what each other is going through.Even tho we may not always post a response to

each post (WE hurt too!!)we still care and understand. I hope you have a great

day.

Trudy

stillbreathing29 <stillbreathing29@...> wrote:

as I am sure every one here can on some level.

I have RA with a " high lupus count " whatever that means. I am

never told I have lupus right out but I feel the so-called high

count makes the RA a little on the extreme and severe side if that

is possible.

I am feeling a little down too and thought I would come here to chat

with the group. It can be a bit much to live this new chronically

ill life. Even though I am married, the condition is not very

marriage friendly, so still seek the company of other RA'ers.

I didn't get as far as you got with the career but had very high

hopes. I was a late bloomer, working in a hospital, training as

EMT, preparing for physician testings at a school in LA. I didn't

get to applying. As soon as I finished the EMT training I got RA.

So, I trained as an medical transcriptionist, so that I would have

something I could do from home and have been trying to complete a

BA's ever since while caring for my daughter who regressed at 2

years (passed away at 5/14/04 - age 11). It has been a long journey

but I am still fighting and hanging in there. It is all any of us

can do, right?

I was turned down for SS employment based 5 times. I had the

assistance of a lawyer. Finally, just started looking for other

ways to survive. I took out student loans, but school actually

brings on more flares. I guess the stress of it, not sure. I won't

give up though.

At this point, I am not all that interested in the SS, just wish

they had a program that at least helped us to retrain for something

we can do with RA. Until then, I will keep working as a

transcriptionist.

love and peace,

Ebony

> Dear RA Group;

> I probably belong here as well as anywhere else...if you all

will

> have me that is! I have Lupus, OA, Osteopenia, Post Thyroid CA,

> Fibromyalgia, severe sleep apnea, ideopathic sinus tachycardia,

and

> of course- Depression! It sounds like a lot when you write it all

> down, but as you all probably know, a lot of this stuff goes

> together, and just makes for one different and difficult life!

> Different from who we used to be, and who we wanted to be.

Difficult

> because it's hard...to give up your career, and vitality, and

> independence in some cases. It's hard to live with chronic pain,

> and " living " the " claim " years: You know- trying to get your due

via

> SS, employer-based insurance, VA comp, etc and constantly having

> to " prove " your disability instead of being able to do

the " healthy "

> thing, and get on with this different and difficult life.

> I was DX was LUPUS in 1994, after years of severe arthralgias,

> a " fetal " demise @ 20 weeks, petechial rashes, and then the big

guns:

> Brain MRI showing multiple lacunar infarcts, and positive lab work-

> once they finally started looking in the right direction. Have had

> Fibromyalgia since 1989- before it was even called " fibro " (it was

> called various forms of 'myositis'). Thyroid Cancer in 1995. Had

to

> finally cease and desist my beloved (and much grieved loss of my)

> Nurse/Manager position in 1999, and have been trying to get SS and

VA

> comp since. Actually, been trying to get VA comp since 1991, when

I

> got out of the AF Nurse Corps during Operation Desert Storm.

Finally

> after 14 years- I am getting evaluated by the VA MD's (5 different

> appointments, no less!)during the next 3 weeks. So I guess I'm a

> little more depressed and anxious, and possibly cynnical,than

usual-

> because I just dont have ANY faith in the VA system doing the

right

> thing, and I just can't deal with that.

> Anyway- thats a little bit about me. I look forward to getting

to

> know you all.