Elaine

[Guest guest]

Thank you Heidi. Right now I'm holding my own. Am on the tail end of

getting through a terrible flare. I'm in the midst of evaluations at

UCLA. They are fantastic there, at least the doctors I've seen. I was

turned down for a lung transplant, partially because of my RA. But

I'm o.k. with that; really didn't want a transplant and only agreed

to be evaluated and listed (if I'd been accepted) because of pressure

from my doctors here and friends.

Hope your feeling well. I haven't written but have followed a lot of

your pregnancy. Pregnancy and childbirth is one of the most beautiful

miracles we've been given that is ours to enjoy, " see " and cherish

now. Enjoy every minute. I really love your excitement and enthusiasm.

I can't remember, is your family near? How about your hubby's?

I was blessed with four children and now am expecting our 9th

grandchild. Three (plus the " soon-to-come " one)live very close to us.

They lived with us for four years. The others are scattered around

the country --- Washington, Idaho and South Carolina.

Take care.

Elaine in Vegas

> Hi there Elaine,

> It's great to see you posting. How are you doing?

> Heidi

>

>

>

>

>

>

> _________________________________________________________________

> Help STOP SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

[Guest guest]

It's great that you are finally being checked out at UCLA, Elaine. They

have such a good reputation. Have they offered any further insight into

your problems? Any ideas for better therapy?

I'm sorry that the lung transplant won't be possible, but at least you

looked into it. In some ways, it's nice that they made the decision for

you, especially if you really didn't want to do it in the first place.

I had some friends who went to Vegas this week. I thought of you. They

asked me to come along, but my childless chums don't always understand

that I can't easily fly away from the boys for a few fun days in LV on

very short notice. Darn.

Congratulations on that 9th grandchild on the way!

[ ] Re: Elaine

> Thank you Heidi. Right now I'm holding my own. Am on the tail end of

> getting through a terrible flare. I'm in the midst of evaluations at

> UCLA. They are fantastic there, at least the doctors I've seen. I was

> turned down for a lung transplant, partially because of my RA. But

> I'm o.k. with that; really didn't want a transplant and only agreed

> to be evaluated and listed (if I'd been accepted) because of pressure

> from my doctors here and friends.

>

> Hope your feeling well. I haven't written but have followed a lot of

> your pregnancy. Pregnancy and childbirth is one of the most beautiful

> miracles we've been given that is ours to enjoy, " see " and cherish

> now. Enjoy every minute. I really love your excitement and enthusiasm.

>

> I can't remember, is your family near? How about your hubby's?

>

> I was blessed with four children and now am expecting our 9th

> grandchild. Three (plus the " soon-to-come " one)live very close to us.

> They lived with us for four years. The others are scattered around

> the country --- Washington, Idaho and South Carolina.

>

> Take care.

>

> Elaine in Vegas

[Guest guest]

Hi ,

They have mentioned many possibilities but said they aren't ready to

discuss them in detail until we do further testing. I did get a call

from the lung doctor Friday, although I was at the lung doctor's

office here. How ironic! He left two long messages, giving me a brief

synopsis of the tests done at my last visit and said he wants me to

have a bronchosopy. They will take biopsies and do washes. He

reviewed his thoughts on what he was looking for with that and gave

me the name and number of his secretary to call and coordinate

everything for my next visit. I left a message for her, but was late

Friday by the time i'd received his message and was able to call her.

That was all from the pulmonary people visit. The rheumatology

doctors also discussed a ton of possibilities as to what was going

on. Like my doctor here, they think I have multiple auto-immune

diseases. They feel (and my doctor here agrees) that with the

complications, severity, and it affecting my lungs and possibly other

organs, plus being resistant to treatment (or should I say difficult

to treat without major side affects) that it really is necessary to

identify as many of those auto immune diseases as possible and

possibly alter my medications. They said that while the same meds are

used to treat most of the most common auto immunes, I have too many

serious things going on to work on that premise any longer.

The clinics where the rheumatology and pulmonary people work are side

by side with the back halls running into one another. The Internal

Medicine Fellow I saw said my two primary (PD & RD) doctors talk

about their patients in common frequently when they see each other in

the halls. They are in clinic on the same day which makes it very

nice. It is wonderful to know their communication is so good. They

all assured us the doctors there would remain in close communication.

My PD here was impressed at how quickly the first set of notes from

UCLA came through. He said he'd never had such fast feedback from any

center he'd sent a patient to for evaluation, including UCLA.

They are talking about a number of changes in treatment, both auto

immune and respiratory, or possibly just additions to current care in

some cases. However, until they are sure about what's going on it is

all just " thoughts and ideas " . I have seen both my PD and RD here

since my appointments at UCLA and both are in total agreement with

what the UCLA folks are thinking and considering in terms of

potential treatment.

As my RD put it, he feels we are standing on thin ice right now with

my treatments and in his heart he knows he needs to make changes but

I'm so fragile and he has come so close to losing me multiple times

that he wants the " big guys " at UCLA to be part of the decision

making process. He told me that with his other patients his fight is

always to keep them as pain free as possible and tries to get them in

remission, but with me its a constant fight just to keep me alive.

Obviously he was exaggerating a little, but I've come so close and

the episodes are more frequent, that I understand why he wants

another opinion before making a change. Unfortunately I won't make it

as a poster child for anyone's drugs!

Gosh, wish you'd come to Vegas. I'd love to meet you. Do you remember

Pat? She was here this week and had dinner with us Friday. Had a

wonderful visit. I'd love to meet you too! Let me know if you get out

this way. I'll send my phone number.

As always, thanks for your encouraging and complimentary words.

Elaine in Vegas (or am I the only Elaine now???)

> It's great that you are finally being checked out at UCLA, Elaine.

They

> have such a good reputation. Have they offered any further insight

into

> your problems? Any ideas for better therapy?

>

> I'm sorry that the lung transplant won't be possible, but at least

you

> looked into it. In some ways, it's nice that they made the decision

for

> you, especially if you really didn't want to do it in the first

place.

>

> I had some friends who went to Vegas this week. I thought of you.

They

> asked me to come along, but my childless chums don't always

understand

> that I can't easily fly away from the boys for a few fun days in LV

on

> very short notice. Darn.

>

> Congratulations on that 9th grandchild on the way!

>

>

>

[Guest guest]

i remember pat too, i hope she is doing well. kathy in il

[Guest guest]

Elaine, this is an encouraging report. I wish your condition weren't so

complicated, but, since it is, I think having several people working

together and sharing ideas is the best approach, especially physicians

with a lot of experience with and exposure to atypical cases. I hope

they come up with a brilliant plan. You are lucky to have so many

doctors who are trying so hard.

As you know, parts of these mysteries are cracked very frequently these

days. I hope someone finds something that can help you substantially -

and soon.

Of course I remember Pat! I ask a for updates on her since she

hasn't been able to participate here. I think a told me that Kineret

is really helping her. It's great that you had a chance to spend some

time together.

Aurora Elaine who then became Naperville Elaine is now Mobile/Wilmer

Elaine. She is still a member, but I believe she is too busy to post

since her family is now nearby.

Take good care and keep us posted,

[ ] Re: Elaine

> Hi ,

>

> They have mentioned many possibilities but said they aren't ready to

> discuss them in detail until we do further testing. I did get a call

> from the lung doctor Friday, although I was at the lung doctor's

> office here. How ironic! He left two long messages, giving me a brief

> synopsis of the tests done at my last visit and said he wants me to

> have a bronchosopy. They will take biopsies and do washes. He

> reviewed his thoughts on what he was looking for with that and gave

> me the name and number of his secretary to call and coordinate

> everything for my next visit. I left a message for her, but was late

> Friday by the time i'd received his message and was able to call her.

>

> That was all from the pulmonary people visit. The rheumatology

> doctors also discussed a ton of possibilities as to what was going

> on. Like my doctor here, they think I have multiple auto-immune

> diseases. They feel (and my doctor here agrees) that with the

> complications, severity, and it affecting my lungs and possibly other

> organs, plus being resistant to treatment (or should I say difficult

> to treat without major side affects) that it really is necessary to

> identify as many of those auto immune diseases as possible and

> possibly alter my medications. They said that while the same meds are

> used to treat most of the most common auto immunes, I have too many

> serious things going on to work on that premise any longer.

>

> The clinics where the rheumatology and pulmonary people work are side

> by side with the back halls running into one another. The Internal

> Medicine Fellow I saw said my two primary (PD & RD) doctors talk

> about their patients in common frequently when they see each other in

> the halls. They are in clinic on the same day which makes it very

> nice. It is wonderful to know their communication is so good. They

> all assured us the doctors there would remain in close communication.

>

> My PD here was impressed at how quickly the first set of notes from

> UCLA came through. He said he'd never had such fast feedback from any

> center he'd sent a patient to for evaluation, including UCLA.

>

> They are talking about a number of changes in treatment, both auto

> immune and respiratory, or possibly just additions to current care in

> some cases. However, until they are sure about what's going on it is

> all just " thoughts and ideas " . I have seen both my PD and RD here

> since my appointments at UCLA and both are in total agreement with

> what the UCLA folks are thinking and considering in terms of

> potential treatment.

>

> As my RD put it, he feels we are standing on thin ice right now with

> my treatments and in his heart he knows he needs to make changes but

> I'm so fragile and he has come so close to losing me multiple times

> that he wants the " big guys " at UCLA to be part of the decision

> making process. He told me that with his other patients his fight is

> always to keep them as pain free as possible and tries to get them in

> remission, but with me its a constant fight just to keep me alive.

> Obviously he was exaggerating a little, but I've come so close and

> the episodes are more frequent, that I understand why he wants

> another opinion before making a change. Unfortunately I won't make it

> as a poster child for anyone's drugs!

>

> Gosh, wish you'd come to Vegas. I'd love to meet you. Do you remember

> Pat? She was here this week and had dinner with us Friday. Had a

> wonderful visit. I'd love to meet you too! Let me know if you get out

> this way. I'll send my phone number.

>

> As always, thanks for your encouraging and complimentary words.

>

> Elaine in Vegas (or am I the only Elaine now???)

[Guest guest]

Thank you so much, Elaine, for your thoughts and prayers as well as for

your great advice about rehab. What they said will happen is that

she'll be on the ortho floor of the hospital for 3 or 4 days, then they

transfer her to the rehab floor of the hospital for another week to 10

days. They told her that she'll get dressed each day and eat in a

cafeteria, and that she'll be busy most of each day with the therapists.

What I didn't know, though, was that I might be welcome to attend so

that I can learn how to best help her. Thank you SO much for the great

information. It's a great help to know I'll be able to learn from the

therapists, too.

Lots of love,

Carol

[ ] Re: or a

Carol,

Do you know if your mom will be going into a rehab facility following

her surgery? After my stroke I went into a rehab facility and there

were also many patients there following " replacements " . My roommate

had a hip replacement.

Anyhow, my reason for asking is that in rehab they not only provided

fantastic and intensive help for the patient, and I noticed they were

full of good tips for my roommate and the other " replacement "

patients (knee and hip) ---- but they also worked with the caregivers

that were going to be at home with the patient after discharge.

The physical and occupational therapists did everything from helping

make sure we (the patients) had the proper assistive equipment in our

homes, to making sure the caregiver could properly assist us in

everyday situations as well as in an emergency without hurting either

the patient or themselves. I couldn't even go home for a day visit

until my husband had been given instructions and practiced with me

there and the therapist went out to our car to make sure I could

transfer properly.

My husband was welcome to be there for any therapy sessions he

wanted, although he didn't make it for many as he was working out of

town.

The point of my writing, and I apologize for getting diverted, is to

encourage your mom to go to a rehab center, if only for a short time.

Also, for you to get involved in her therapy sessions there.

Therapists (Physical and Occupational) are fantastic at giving the

caregiver lots of help in how to help the patient. They will also

make sure your mom has any assistive devices or equipment she may

need. There are so many things we take for granted that are

different, especially following a hip replacement.

One of the things that left an impression on me, and that several of

the THR patients also spoke about, was learning the proper way to get

out of bed, remembering to sleep with the special pillow between

their legs, and just the continued need for proper placement of their

legs in relationship to their hips.

Good luck to you and your mom. She is so fortunate to have you, and

for you to be able to give such loving care. You will both be in my

prayers.

Elaine

> I was wondering, do you have any resources for caregivers after a

knee

> and hip replacement surgery? It looks like it will be about 3 weeks

> until my mom's surgery, and I want to read up on what I need to do.

>

> Thanks!

>

> Carol

>

>

>

>

[Guest guest]

Carol,

I went to a rehab after both of my knee replacements and highly recommend

going. I attribute my success to my intense therapy. She will also learn

how to manage once she gets home. You are a sweet daughter for wanting to

help and be there for her.

Elaine it is such a blessing to see you posting again. As one of the first

members of this group, you've been with us for a very long time and have so

much wisdom to share with our group.

a

> Thank you so much, Elaine, for your thoughts and prayers as well as for

> your great advice about rehab. What they said will happen is that

> she'll be on the ortho floor of the hospital for 3 or 4 days, then they

> transfer her to the rehab floor of the hospital for another week to 10

> days. They told her that she'll get dressed each day and eat in a

> cafeteria, and that she'll be busy most of each day with the therapists.

> What I didn't know, though, was that I might be welcome to attend so

> that I can learn how to best help her. Thank you SO much for the great

> information. It's a great help to know I'll be able to learn from the

> therapists, too.

>

> Lots of love,

> Carol

>

[Guest guest]

a,

Thank you. Your wonderful, kind words are greatly appreciated. It's

very difficult to get back in with a group when you've had to

be " silent " for so many reasons and for such a long time. I know I'm

a stranger to most, but truly hope I'll be able to stay active once

again and will soon be reacquainted with everyone and them with me.

This group, as you well know, has always had a special place in my

heart ---- even through my long periods of silence.

My hope, wish and prayer for every member of this group is

that " quiet " is always each person's choice and not forced by the

ravages of illness, no matter what they may be. My trials and

tribulations haven't been any worse nor even as bad as many, but for

some reason I've stumbled a lot along the way and not been able to

keep up even with the things most dear to my heart, including this

group. It is truly great to be back and I only ask for prayers I

won't need to leave again.

Good night and God bless.

Elaine

> Carol,

> I went to a rehab after both of my knee replacements and highly

recommend

> going. I attribute my success to my intense therapy. She will

also learn

> how to manage once she gets home. You are a sweet daughter for

wanting to

> help and be there for her.

>

> Elaine it is such a blessing to see you posting again. As one of

the first

> members of this group, you've been with us for a very long time and

have so

> much wisdom to share with our group.

> a

>

>

>

> > Thank you so much, Elaine, for your thoughts and prayers as well

as for

> > your great advice about rehab. What they said will happen is that

> > she'll be on the ortho floor of the hospital for 3 or 4 days,

then they

> > transfer her to the rehab floor of the hospital for another week

to 10

> > days. They told her that she'll get dressed each day and eat in a

> > cafeteria, and that she'll be busy most of each day with the

therapists.

> > What I didn't know, though, was that I might be welcome to attend

so

> > that I can learn how to best help her. Thank you SO much for the

great

> > information. It's a great help to know I'll be able to learn

from the

> > therapists, too.

> >

> > Lots of love,

> > Carol

> >

[Guest guest]

Carol,

It sounds like they have a great plan in place for your mom.

I know it sounds silly to many, but on the rehab floor getting

dressed and going to the cafeteria (or dining hall or whatever they

have set up) is actually part of the therapy. After something such as

a joint replacement, stroke, etc. many of the fundamental skills we

take for granted either have to be learned over from the beginning or

need to learn to be done in a different manner so as not to cause

further or new damage.

Any sort of group sessions, including eating together, are important

both medically and socially. It is very easy to want to be alone and

sometimes wallow in self pity. Patients have a wonderful way of

helping one another.

We had private therapy sessions, meals together (patients in the unit

who were able to leave their rooms) as well as joint therapy sessions

every day. Occupational therapists first helped us to get dressed,

teaching us ways to accomodate for our losses and ways not to injure

ourselves, then gradually progressed to just " supervising " us.

I have to say one of my favorite parts of rehab were the visits from

the " therapy dogs " . They brightened my day every time they were

there. One of the trainers gave each patient a little card she'd

printed on her computer with a photo of her " therapy dog " on front

and a message of get well and encouragement inside. I just came

across mine the other day and brought tears to my eyes.

So much sounds so trivial if you haven't been there, but it is all so

important. Again, if I didn't say it before, your mom is so very

lucky to have such a loving daughter ---- ready and able to be there

to help in any way.

Please don't be hesitant to ask questions of the therapists. Mine

were eager to answer any and all questions my husband had and also

made appointments to spend individual, undivided time with him. I

would have had to be in rehab much longer had not there been such

fantastic teamwork. The therapists even stayed beyond their normal

working hours to make sure they could give us enough time.

I've found (my sil is a PT also) that therapists who choose to work

in rehab are generally very dedicated to their patients and their

jobs. They spend more time each day, and more days per week (was

seven days per week in my case) and see fewer patients overall than

therapists in other settings. Thus they get to know their patients

better and really work extraordinarily hard to make sure they

progress and get better.

Don't misunderstand me, all therapists work hard and try their best

to help patients get better. However, there seems to be more of a

personal touch in a rehab setting. They are also with you so much

they quickly learn how hard they can urge you forward in the path of

progress ------ so rehab is likely the most difficult work of one's

life. It certainly was mine.

If there is anything else I can help you with or any questions you

want to ask, please feel free to ask. I do apologize that I often get

a bit " wordy " and my fingers " runny " . Brevity is not my strong point,

unfortunately.

Elaine

> Thank you so much, Elaine, for your thoughts and prayers as well as

for

> your great advice about rehab. What they said will happen is that

> she'll be on the ortho floor of the hospital for 3 or 4 days, then

they

> transfer her to the rehab floor of the hospital for another week to

10

> days. They told her that she'll get dressed each day and eat in a

> cafeteria, and that she'll be busy most of each day with the

therapists.

> What I didn't know, though, was that I might be welcome to attend so

> that I can learn how to best help her. Thank you SO much for the

great

> information. It's a great help to know I'll be able to learn from

the

> therapists, too.

>

> Lots of love,

> Carol

[Guest guest]

Amen!

[ ] Re: Elaine

> a,

>

> Thank you. Your wonderful, kind words are greatly appreciated. It's

> very difficult to get back in with a group when you've had to

> be " silent " for so many reasons and for such a long time. I know I'm

> a stranger to most, but truly hope I'll be able to stay active once

> again and will soon be reacquainted with everyone and them with me.

> This group, as you well know, has always had a special place in my

> heart ---- even through my long periods of silence.

>

> My hope, wish and prayer for every member of this group is

> that " quiet " is always each person's choice and not forced by the

> ravages of illness, no matter what they may be. My trials and

> tribulations haven't been any worse nor even as bad as many, but for

> some reason I've stumbled a lot along the way and not been able to

> keep up even with the things most dear to my heart, including this

> group. It is truly great to be back and I only ask for prayers I

> won't need to leave again.

>

> Good night and God bless.

>

> Elaine

>

>

>

>

>

> > Carol,

> > I went to a rehab after both of my knee replacements and highly

> recommend

> > going. I attribute my success to my intense therapy. She will

> also learn

> > how to manage once she gets home. You are a sweet daughter for

> wanting to

> > help and be there for her.

> >

> > Elaine it is such a blessing to see you posting again. As one of

> the first

> > members of this group, you've been with us for a very long time and

> have so

> > much wisdom to share with our group.

> > a

[Guest guest]

Hi Elaine,

Thank you so much for writing and sharing with me.

I sometimes wonder how I can still be nice to my husband,

but I know it is only by the grace of God that I am able to,otherwise

I am sure I would hate him. I care what happens to him, how can

I not he was my husband for 33 years. I just do not know sometimes

what I think anymore. It is very hard. I know I want the dissolution

I filed for as I cannot trust him. Someone please help me to understand

all of this..Joy

[ ] Joy

>

>

> Hi Joy, I felt very sad reading your email. This is a very caring

group who,

> I know, can help you get through this. As many others have said,

and it is

> very true, your husband has the problem and it has nothing to do

with you.

>

> Hugs

> June

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.461 / Virus Database: 260 - Release Date: 3/10/03

>

>

>

[Guest guest]

Elaine,

I understand how difficult it is for you and many other silent members to

keep up with our group especially since it is so active. Whatever you are

able to share is very much appreciated. I'm sorry you have learned so much

from experience, but your knowledge is vast and your kindness is abundant.

As always, you are in my thoughts and prayers.

a

> a,

>

> Thank you. Your wonderful, kind words are greatly appreciated. It's

> very difficult to get back in with a group when you've had to

> be " silent " for so many reasons and for such a long time. I know I'm

> a stranger to most, but truly hope I'll be able to stay active once

> again and will soon be reacquainted with everyone and them with me.

> This group, as you well know, has always had a special place in my

> heart ---- even through my long periods of silence.

>

> My hope, wish and prayer for every member of this group is

> that " quiet " is always each person's choice and not forced by the

> ravages of illness, no matter what they may be. My trials and

> tribulations haven't been any worse nor even as bad as many, but for

> some reason I've stumbled a lot along the way and not been able to

> keep up even with the things most dear to my heart, including this

> group. It is truly great to be back and I only ask for prayers I

> won't need to leave again.

>

> Good night and God bless.

>

> Elaine

>

>

>

>

>

>> Carol,

>> I went to a rehab after both of my knee replacements and highly

> recommend

>> going. I attribute my success to my intense therapy. She will

> also learn

>> how to manage once she gets home. You are a sweet daughter for

> wanting to

>> help and be there for her.

>>

>> Elaine it is such a blessing to see you posting again. As one of

> the first

>> members of this group, you've been with us for a very long time and

> have so

>> much wisdom to share with our group.

>> a

>>

>>

>>

>>> Thank you so much, Elaine, for your thoughts and prayers as well

> as for

>>> your great advice about rehab. What they said will happen is that

>>> she'll be on the ortho floor of the hospital for 3 or 4 days,

> then they

>>> transfer her to the rehab floor of the hospital for another week

> to 10

>>> days. They told her that she'll get dressed each day and eat in a

>>> cafeteria, and that she'll be busy most of each day with the

> therapists.

>>> What I didn't know, though, was that I might be welcome to attend

> so

>>> that I can learn how to best help her. Thank you SO much for the

> great

>>> information. It's a great help to know I'll be able to learn

> from the

>>> therapists, too.

>>>

>>> Lots of love,

>>> Carol

>>>

>

>

>

>

[Guest guest]

Thank you a, and June. Your kind words are greatly

appreciated. It is so nice to be back, although I don't feel as if

I'm able to be as active as I'd like or used to be. At least not yet.

I would like to ask for prayers that my health will remain relatively

stable and will permit me to participate regularly, even if not as

fully or as often as I'd like. I've truly missed being part of the

group and appreciate the welcomes back.

Elaine

> Elaine,

> I understand how difficult it is for you and many other silent

members to

> keep up with our group especially since it is so active. Whatever

you are

> able to share is very much appreciated. I'm sorry you have learned

so much

> from experience, but your knowledge is vast and your kindness is

abundant.

> As always, you are in my thoughts and prayers.

> a

[Guest guest]

Iris,

Were the jobs you tried before or after May? You can work, or try to

work, and as long as you don't earn over a certain amount (I think it

is about $700 per month) you can still be considered disabled and be

elgible for benefits. It actually can be in your favor to try to work

and not be able to. I would suggest putting down the first date of

the first job you tried and couldn't handle physically as your date

of disability. However, I am not familiar with the law as it applies

to unemployment. Perhaps someone else can address that part of the

issue. Which would be more for you --- unemployment or disability?

I actually left the date blank on my form and they declared me

disabled several years prior to when I applied. Unfortunately

(although I was very grateful for everything I got) you only can get

benefits up to one year retroactive.

I think you have an excellent chance of getting approved on your

first try, and also very quickly.

Making the decision was the most difficult part for me. My husband

actually called to make the appointment because I kept

procrastinating! Plan to leave copies of everything you can. I really

think it helps. It really sounds like you are on the right track. I

truly hope your experience is as positive as mine.

I have sero-negative RA and other multiple non-specifically diagnosed

auto-immune disorders. I, unfortunately, have RA in my lungs as well

as my joints. My lungs are as bad or worse than my joints. I'm on

oxygen 24/7 on increasing amounts. I use a motorized wheelchair for

most physical activity. My limit without the chair is about 10

minutes on my feet.

I have declined steadily, but much is due to having many problems

with medications as well as an assorted myriad of maladies, none of

which fit " cookbook medicine " . As my doctors put it, I just don't fit

anywhere in the medical textbooks.

It did help significantly to be able to stop working, although the

relief was brief. My lungs have actually deteriorated to the point I

am elgible for a lung transplant. However, because at least part of

my problem is RA and is at this time " an active disease contributing

to the lung dysfunction " , is also one of several factors that made me

not qualified to be a candidate at this time for a lung transplant.

It's a real double edged sword, so to speak.

My story is very long and very complicated and seems to get more and

more complicated as time goes on.

It is a pity that finances dictate what medications we can take.

Right now they are working on trying to get approvals for a drug they

want me to take for another lung disease I have that is also

affecting my heart. It is extremely expensive (about $50,000 per

year) and normally rejected by most insurance. They have someone who

works to get approvals, and if they can't get approvals they try to

find other sources of financial assistance to make the drug

affordable. I take about 27 other drugs, many of which are quite

expensive even with insurance, so another $50,000 per year would be

prohibitive.

I didn't mean to make this so long or to ramble on and on. Sorry

about that. Also didn't mean to talk so much about " me " when I was

intending to talk only about you.

Again, I wish you only the best with your disability interview. I

guess, if I could offer only one (or maybe two) pieces of advice it

would to be completely honest and to have plenty of documentation.

Thinking back to the first part of this email, when you go for your

interview tell the case worker you were on unemployment, looking for

a job, and did try two jobs but couldn't handle either one. If you

are upfront and honest they will work with you. At least that's my

experience.

Elaine

> Dear Elaine,

> Thank you very much for your letter. I feel hopeful for the first

time in a while just thinking

> that I finally made a decision and got the ball rolling. You

provided me with some really good

> advice. I have books of records by now and I will begin a pain

journal. I think that you are right

> about being organized. I will submit all the docs names and time

periods that I saw them. I also

> plan on submitting observations from friends and family who have

watched the progression of my

> disease and how it has affected our lives. I want to make sure that

they understand the impact

> that it has had on my life. When the SS Rep asked about when I

became disabled, I told her that it

> was total disability in May because I have been receiving

unemployment until then which means that

> I was supposed to be looking for a job. I have looked and even

started two of them but quickly

> knew that I just couldn't work. I don't know if I could get in

trouble for this or not. Do you

> have any thoughts?

>

> I am diagnosed with non-reactive arthritis, sero-negative

spondyloarpathy, cervical spondylosis,

> FM, and Osteo. I am injecting 15.0 MTX weekly. It has helped in

some ways but the progression of

> nodules on my hands has not been stopped. It has not helped the

knee that needs replaced and the

> SI joint that is so painful. I think that so much damage has

occurred already and that can't be

> changed and the only way to deal with it is pain control.

>

> I am so happy to hear about your positive experience. What is your

diagnosis? Has it made a

> difference in your condition by not working? Thanks again. Hugs to

you. Iris

>

[Guest guest]

Dear Elaine,

You sound so very ill but yet you have taken the time to help me.

Thank you so much! When I hear about some of our members that are

so very sick, I feel like I should just be thankful that I can

function while on pain meds. It must me so hard for you to remain

optimistic while you are suffering from so much disease progression.

I will remember you in my prayers. I can't imagine not being able to

breathe...how frightening that must be. If you deteriorate any further

will they be willing to do a lung transplant even with the RA?

We are the United States of America and we pay for medical research

for the entire world. Why our citizens can't have the medications

that they need; due to cost, is absurd! I would much rather spend

billions on healthcare as to finance a war! Our seniors, disabled,

and children are suffering due to " lack of funds. "

The job that I was fired at once they found out about my medical

status was May, a year ago. I have tried two others since then.

I think that you are right about how to handle the unemployment.

Thanks for your advice. You may be disabled, but you still make

a contribution to others through our group and I thank you.

Many hugs to you. Iris

--- elainho <demarn@...> wrote:

> Iris,

> Were the jobs you tried before or after May? You can work, or try to

> work, and as long as you don't earn over a certain amount (I think it

> is about $700 per month) you can still be considered disabled and be

> elgible for benefits. It actually can be in your favor to try to work

> and not be able to. I would suggest putting down the first date of

> the first job you tried and couldn't handle physically as your date

> of disability. However, I am not familiar with the law as it applies

> to unemployment. Perhaps someone else can address that part of the

> issue. Which would be more for you --- unemployment or disability?

>

>

> I actually left the date blank on my form and they declared me

> disabled several years prior to when I applied. Unfortunately

> (although I was very grateful for everything I got) you only can get

> benefits up to one year retroactive.

>

> I think you have an excellent chance of getting approved on your

> first try, and also very quickly.

>

> Making the decision was the most difficult part for me. My husband

> actually called to make the appointment because I kept

> procrastinating! Plan to leave copies of everything you can. I really

> think it helps. It really sounds like you are on the right track. I

> truly hope your experience is as positive as mine.

>

> I have sero-negative RA and other multiple non-specifically diagnosed

> auto-immune disorders. I, unfortunately, have RA in my lungs as well

> as my joints. My lungs are as bad or worse than my joints. I'm on

> oxygen 24/7 on increasing amounts. I use a motorized wheelchair for

> most physical activity. My limit without the chair is about 10

> minutes on my feet.

>

> I have declined steadily, but much is due to having many problems

> with medications as well as an assorted myriad of maladies, none of

> which fit " cookbook medicine " . As my doctors put it, I just don't fit

> anywhere in the medical textbooks.

>

> It did help significantly to be able to stop working, although the

> relief was brief. My lungs have actually deteriorated to the point I

> am elgible for a lung transplant. However, because at least part of

> my problem is RA and is at this time " an active disease contributing

> to the lung dysfunction " , is also one of several factors that made me

> not qualified to be a candidate at this time for a lung transplant.

> It's a real double edged sword, so to speak.

>

> My story is very long and very complicated and seems to get more and

> more complicated as time goes on.

>

> It is a pity that finances dictate what medications we can take.

> Right now they are working on trying to get approvals for a drug they

> want me to take for another lung disease I have that is also

> affecting my heart. It is extremely expensive (about $50,000 per

> year) and normally rejected by most insurance. They have someone who

> works to get approvals, and if they can't get approvals they try to

> find other sources of financial assistance to make the drug

> affordable. I take about 27 other drugs, many of which are quite

> expensive even with insurance, so another $50,000 per year would be

> prohibitive.

>

> I didn't mean to make this so long or to ramble on and on. Sorry

> about that. Also didn't mean to talk so much about " me " when I was

> intending to talk only about you.

>

> Again, I wish you only the best with your disability interview. I

> guess, if I could offer only one (or maybe two) pieces of advice it

> would to be completely honest and to have plenty of documentation.

> Thinking back to the first part of this email, when you go for your

> interview tell the case worker you were on unemployment, looking for

> a job, and did try two jobs but couldn't handle either one. If you

> are upfront and honest they will work with you. At least that's my

> experience.

>

> Elaine

>

>

>

>

>

>

> > Dear Elaine,

> > Thank you very much for your letter. I feel hopeful for the first

> time in a while just thinking

> > that I finally made a decision and got the ball rolling. You

> provided me with some really good

> > advice. I have books of records by now and I will begin a pain

> journal. I think that you are right

> > about being organized. I will submit all the docs names and time

> periods that I saw them. I also

> > plan on submitting observations from friends and family who have

> watched the progression of my

> > disease and how it has affected our lives. I want to make sure that

> they understand the impact

> > that it has had on my life. When the SS Rep asked about when I

> became disabled, I told her that it

> > was total disability in May because I have been receiving

> unemployment until then which means that

> > I was supposed to be looking for a job. I have looked and even

> started two of them but quickly

> > knew that I just couldn't work. I don't know if I could get in

> trouble for this or not. Do you

> > have any thoughts?

> >

> > I am diagnosed with non-reactive arthritis, sero-negative

> spondyloarpathy, cervical spondylosis,

> > FM, and Osteo. I am injecting 15.0 MTX weekly. It has helped in

> some ways but the progression of

> > nodules on my hands has not been stopped. It has not helped the

> knee that needs replaced and the

> > SI joint that is so painful. I think that so much damage has

> occurred already and that can't be

> > changed and the only way to deal with it is pain control.

> >

> > I am so happy to hear about your positive experience. What is your

> diagnosis? Has it made a

> > difference in your condition by not working? Thanks again. Hugs to

> you. Iris

> >

>

>

>

>

>

[Guest guest]

Iris,

We already spend billions on healthcare, more than any other industrialized

nation. We also have the worse health of all the other nations, so spending

more doesn't mean we'll get better healthcare. It just means big business

pockets will get deeper. As long as medicine is business, decisions on

healthcare will be profit driven.

You are so right about Elaine. I've known Elaine for about 5 years now and

she is the most special lady. In spite of her ill health, she is always

there to try to comfort others.

a

> You sound so very ill but yet you have taken the time to help me.

> Thank you so much! When I hear about some of our members that are

> so very sick, I feel like I should just be thankful that I can

> function while on pain meds. It must me so hard for you to remain

> optimistic while you are suffering from so much disease progression.

> I will remember you in my prayers. I can't imagine not being able to

> breathe...how frightening that must be. If you deteriorate any further

> will they be willing to do a lung transplant even with the RA?

>

> We are the United States of America and we pay for medical research

> for the entire world. Why our citizens can't have the medications

> that they need; due to cost, is absurd! I would much rather spend

> billions on healthcare as to finance a war! Our seniors, disabled,

> and children are suffering due to " lack of funds. "

>

> The job that I was fired at once they found out about my medical

> status was May, a year ago. I have tried two others since then.

> I think that you are right about how to handle the unemployment.

> Thanks for your advice. You may be disabled, but you still make

> a contribution to others through our group and I thank you.

> Many hugs to you. Iris

[Guest guest]

E-mail me at Del34@...

, l love <briansgirl302@y...> wrote:

> Stacey,

> What's going on? I will e-mail you. Elaine

>

> stacydel34 <stacydel34@y...> wrote:

>

>

> I am unsubscribing from this group you are a very angry bitter

woman!

> that is very obvious. It is also sad you are very unsupportive to

> anyone who choses to think for themselves. If you have an opinion

> here, that does not jive with the opinions of the group, your not

on

> the up and up, your a trouble maker! it is sad and very disturbing

> that all this group has is what 10 members who seem to post over

and

> over again about what they KNOW well you don't have anything but

> opnions. Because you are sick, I am sorry about that, but that does

> not mean everyone with implants is sick. You have all named one or

> two people you know with some mysterious problem when in fact many

> people have health problems that do not have implants. Search the

web

> and you will find groups for everything arthritis, FMS, Nerve

> problems, MS etc on and on and on.

> You are very rude to me just because I have a different viewpoint

> than you. I don't need to be a member of the sheep heard here on

this

> site. I have a brain and can make my own opinions with it.

> I came here for unbiased information and if you visit

> explantation.com or implant facts you will get very different

> information than you do here. This is a very militant site. You all

> have to have it your way, your word is the final word. I am

surprised

> your not running the country you know so much about EVERYTHING!

> I have never met a woman who knows more about everything in the

world

> than you .

> Your posts are full of yourself. I tried to be nice, but you had

the

> odacity to say I am trying to stir up trouble because I dare to

> challenge you.CHALLENGE JULIE NOT STIR UP TROUBLE YOUR POSTS TO ME

> WERE MEAN NOT THE OTHER WAY AROUND LOOK AT IT! I EVEN SAID I WAS

NOT

> GETTING IMPLANTS! why was that not enough for you! YOU want me to

> just believe you when you are not showing me any facts at all!

> then you blame it on things like the FDA and other nonsense. If all

> women with implants were sick FACE IT JULIE THERE WOULD BE A HUGE

> PUBLIC OUTCRY. It is because you have if your even lucky about 25

> women on here that have some kind of illnesses and you cannot prove

> it is your implants. Where are the 1,000's of women you all talk

> about WHERE ARE THEY ??????????

> I still don't want implants, but not because I really think i will

> get ill, NO I DON'T think so. I know about 20 girls in Florida

where

> I am originally from who all have implants, my sister, my aunt, my

> best friends from High school, nurses, I mean professional women

and

> they are all FINE, but I am not foolish enough to just assume that

> means I will have luck with implants. I don't want to risk it or

deal

> with replacements.

> you are also wrong about these SURGEONS BUT YOU DON " T WANT TO FACE

IT

> BECAUSE AGAIN IT GOES AGAINST YOUR OPINIOn your right always aren't

> you?

> your surgeon questionable, she puts them in and takes them out as

> fast as she can and makes money off them. But in all honesty it is

> probably because she knows the truth too, not all women get sick!

>

> Your not a Dr, you give out all this medical information like your

> some thyroid specialist, it is extremely scary and dangerous.

> When you get your medical license then maybe you can give out

medical

> advice, when someone gets sick from your crazy ideas and advice and

> sues you maybe you will stop.

> Until then I will stay clear of this site and not recomend it to

> anyone.

>

> To say that ALL WOMEN GET SICK IS THE MOST REDICULOUS INCEDIBLY

> IRRESPONSIBLE THING I HAVE EVER HEARD.

> there is a small number of you that have problems I do agree that

is

> the case and I feel bad for you. I really do for those who are sick

> but by acting like this you just chase away others It sounds like

you

> need some therapy to deal with your extreme anger issues.

> If it were as bad as you claim it would be an epidemic. Like aids

and

> other diseases. Why would Dr's turn there back on this if EVERYONE

> WAS SICK WHY ISN " T YOUR DR OUT THERE FIGHTING THIS INSTEAD OF

> IMPLANTING WOMEN< WHY ARE THEY NOT TELLING THE TRUTH! EVERYONE WITH

> IMPLANTS IS SICK! god that is sad to lie like that.

>

> In the future you might want to nicer to new members if they

disagree

> with you, that does not make them wrong.

>

> Usubscribe please

>

>

>

>

>

>

>

>