update

[Guest guest]

With my situation I was fired for my disabilities. I was out of work

except for my one hour a day job for over a year but it took 2 years to

get my disability. I was also told if I earned over $500.00 a month I

would not qualify for disability as they would consider I could do

gainful employment. I was lucky enough to have a husband even though

times were hard due to the loss of a second income. Have you talked to

SS about disability and how much you can work before it goes agains you

as far as getting SS. As long as your employeer accomidates you I don't

think there is much to do but take what is offered. But I would be sure

to find out exactly how much money you can earn without putting your

chance for disability in jerpody. I sued my employeer but by that time I

was on SS disability and was not allowed to take the money or I would

lose my SS. I also had to wait another year after I got on disability to

get medicare I agree about the cobra if a person is out of work how in

the heck to they think a person can pay hundered of dollars a month for

insurance.

Pamm

[Guest guest]

At 07:15 AM 10/24/02 -0500, you wrote:

>Have you talked to SS about disability and how much you can work before it

>goes agains you

>as far as getting SS.

The amount you are allowed to earn without affecting disability payment is

based on your earnings records, as is the amount your disability check.

>I agree about the cobra if a person is out of work how in the heck to they

>think a person can pay hundered of dollars a month for insurance.

Coming up with the money to pay Cobra coverage may be tough, but consider

the options. If you take the Cobra you retain the same insurance you had

with your employer, although you are liable for the monthly payment. If you

don't take it, getting private coverage will be much more expensive and

pre-existing conditions will most likely not be covered. Of course, if you

have a disability, you may not even qualify for private insurance. It's far

from an ideal situation, but it does give a person a way to keep health

insurance coverage.

moderator, Yahoo! Chronic Pain

http://home.dejazzd.com/hower

[Guest guest]

See if he will eat rice or pasta. It won't hurt them. I have a 15 yr old dog

who has pancreatitis and we feed that to him.

m

>

>Reply-To: LBDcaregivers

>To: " LBDcaregivers " <LBDcaregivers >

>Subject: Update

>Date: Thu, 6 May 2004 22:43:28 -0500

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>

>Hi All,

>

>Am I tired or what!!!!!!!!!!!! Was up with Max most of the night cleaning

>up after him and then again this morning before I left to care for mom. I

>hated to leave him but had no choice.

>Once I got to my moms my daughter was there and practically bawling her

>face off as she had been up most of the night getting sick too. I made her

>some Lipton's soup and encouraged her to take a nice hot shower as she had

>her first doc's appt at 4:00. Then it was on to mom who was also having

>her panic moments. Back home to care for Max and clean up after him. I

>did pick up his 3 meds and special food today (nearly $80.00 thank you very

>much!). He wouldn't eat the special food so I had to shove the three pills

>down his throat. Now every time I move he runs in the opposite direction!

>:0

>I tore the kitchen apart trying to make bland foods that he might eat but

>he didn't go for any of it. I finally remembered how much he loves peanut

>butter and he did lick off about half a teaspoon full. It's probably bad

>for him but I figure something is better than nothing at this point.

>Whew!

>Courage

>

>Please follow this link to learn more about Lewy Body Dementia

>http://www.lewybodydementia.org

>

>

>

[Guest guest]

I am so sorry to hear that. Does the Vet give any hope? Our little children

depend so much on us.When my daughters dog was dying, I told her that she

owed it to the dog to do the right thing, Rascal(the dog) had always been

there to protect Sara and now she had to protect Rascal. Sara was about 19

and it was her very first dog.

M

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: Re: Update

>Date: Fri, 14 May 2004 13:32:15 -0500

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>

>Thanks . I did try to feed him these things (spent an entire evening

>in the kitchen cooking everything I could get my hands on) but he wouldn't

>eat it. Max won't eat a thing no matter what it is.

>Courage

>

> Update

> >>Date: Thu, 6 May 2004 22:43:28 -0500

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>May

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> >>

> >>Hi All,

> >>

> >>Am I tired or what!!!!!!!!!!!! Was up with Max most of the night

>cleaning

> >>up after him and then again this morning before I left to care for mom.

>I

> >>hated to leave him but had no choice.

> >>Once I got to my moms my daughter was there and practically bawling her

> >>face off as she had been up most of the night getting sick too. I made

>her

> >>some Lipton's soup and encouraged her to take a nice hot shower as she

>had

> >>her first doc's appt at 4:00. Then it was on to mom who was also having

> >>her panic moments. Back home to care for Max and clean up after him. I

> >>did pick up his 3 meds and special food today (nearly $80.00 thank you

>very

> >>much!). He wouldn't eat the special food so I had to shove the three

>pills

> >>down his throat. Now every time I move he runs in the opposite

>direction!

> >>:0

> >>I tore the kitchen apart trying to make bland foods that he might eat

>but

> >>he didn't go for any of it. I finally remembered how much he loves

>peanut

> >>butter and he did lick off about half a teaspoon full. It's probably

>bad

> >>for him but I figure something is better than nothing at this point.

> >>Whew!

> >>Courage

> >>

> >>Please follow this link to learn more about Lewy Body Dementia

> >>http://www.lewybodydementia.org

> >>

> >>

> >>

[Guest guest]

>

> >

> Multivitamin 1 tab a day

>

> Calcium 1200 mg a day

> Magnesium 250mg 1 tab a day

>

>Christi --

Congratulations on finding a doctor that listens. I'm taking almost

the same supplements you are, but a different ratio of Calcium to

Magnesium.

I've understood that the ratio is supposed to be 2/1. So unless you

have more magnesium in your multi, you need to be taking more magnesium.

Best, Fibrojay

[Guest guest]

Well it’s great to hear from you Kulia, but not how rough it’s been for you

lately. Push this disease, and it shoves back 10 times harder, hey? I do

hope that you are getting proper care for those nasty shingles and they go

away really soon. I’m glad that your son is helping out. Don’t feel bad

about that, no one said mothers were slaves and it is good for him to help

out. Rest up and take care and feel stronger real soon, Aylwin xox

[Guest guest]

Well it’s great to hear from you Kulia, but not how rough it’s been for you

lately. Push this disease, and it shoves back 10 times harder, hey? I do

hope that you are getting proper care for those nasty shingles and they go

away really soon. I’m glad that your son is helping out. Don’t feel bad

about that, no one said mothers were slaves and it is good for him to help

out. Rest up and take care and feel stronger real soon, Aylwin xox

[Guest guest]

So sorry to read you have shingles. I had it at the beginning of the

year. It took days before it showed on the outside and I was freaking

out over the intense pain. It was about a month before it was gone.

The doctor said you can only get it once but I figured only somebody

with my problems would get it again. Of course I am in a mood about

doctors and how helpful they are. Hope you feel better soon.

>

> Hi,

>

> My doctor recently went on a vacation, so since he was helping me

> with pain management, I decided to make another visit a bit sooner

> than I would normally. Well the trip to the doctors and back really

> threw my whole system off balance. So I called another doctor and

he

> told me not to expose myself anymore and that I was having a

> reaction to a chemical sensitivity (CFIDS and MCS).

[Guest guest]

Hi Kulia,

I am so sorry you are feeling so ill. I understand totally about going

to the pot luck. Sometimes you don't listen to your body and do

something for your mental health and then there is pay back. And

sometimes it is worth it and sometimes not. I understand Shingles is

quite painful to experience and am hoping that you can get through your

episode as quickly as possible and back to a state of near normal

illness.

Sandrea

[Guest guest]

I read in Hoffman's holistic herbal book that for shingles

it's really important to take echinecea and these herbs for nerve

pain and prevent damage to nerves, Jamaican Dogwood, Passion Flower,

and Valerian. This has really helped. I'm thinking maybe I should

lay off the Auyervedic stress ease and triphala for a while and just

concentrate on the Native American herbs for the shingles. Again

went to another potluck for Halloween kids and now I'm in a bit of

pain. I've been feeling better and stronger but going out right now

just upsets the health condition. This morning I got tired of

depressing myself with ill thoughts and decided the only way I'm

going to feel better is to make mind over matter, think stronger, be

thankful for blessings, take herbs and supplements, and just enjoy

the rest! Thanks Alwyn and you guys!~Kulia

- In CFAlliance , " " wrote:

>

> So sorry to read you have shingles. I had it at the beginning of

the

> year. It took days before it showed on the outside and I was

freaking

> out over the intense pain. It was about a month before it was gone.

> The doctor said you can only get it once but I figured only

somebody

> with my problems would get it again. Of course I am in a mood about

> doctors and how helpful they are. Hope you feel better soon.

>

>

> >

> > Hi,

> >

> > My doctor recently went on a vacation, so since he was helping

me

> > with pain management, I decided to make another visit a bit

sooner

> > than I would normally. Well the trip to the doctors and back

really

> > threw my whole system off balance. So I called another doctor and

> he

> > told me not to expose myself anymore and that I was having a

> > reaction to a chemical sensitivity (CFIDS and MCS).

>

[Guest guest]

Hi,

Well since SSI has been telling me that I am able to work because of

doctors that they hire and vocational supposed experts who say that I

can do numerous jobs (absolute bologna!), when I had a sprint of

feeling better I absolutely over did it. What really did me in was an

extra long walk with my son. I really can't exercise as much as I

could before even when I was first diagnosed. I think what really

helps is massage therapy and since it can be costly and I wanted to

buy some clothes for my son instead, I neglected myself. But being a

single mom is only more reason with ME, to not neglect that if I want

to at least enjoy life and feel better. I feel like my shingles is

coming back and I have really been struggling the past two weeks since

I over did it. I may be doing alright but then once I cross that line,

it's like night and day, going from happy to anxiety and depression.

My friend drove us to a sunny place last week and that really helped

getting that vitamin D. I was tired and really pushing myself but more

tired of being depressed and stuck in the house.~Kulia

[Guest guest]

Hi Kulia, it’s good to hear from you! But, not so good to hear that you have

done that thing and crashed. It’s so HARD to not overdo when we get those

notorious good days! One has to be so very patient while crawling back out

of that hole. Do try and get massage if it helps you, perhaps you could

barter for one. I used to do this before the big relapse, and rarely paid

for bodywork. Anyway I wish you well, quite literally, or at least that you

are feeling much better, very soon. XOX Aylwin

[Guest guest]

Thanks Alwyn sweetie!!! It's been very interesting about the post

recently about warning not to ride a bike and not to over do the

exercise. My doctor who diagnosed me and a woman who has MCS who has

posted on this website say that exercise is important. I think the

important thing for us is not to push ourselves too much and remember

if we do exercise to do it moderately. For me resting too much time on

the couch or sleeping can make the fibro worse, but then there's times

when it does feel good to sleep during the day. It just depends for me

anyway.~Kulia

>

> Hi Kulia, it's good to hear from you! But, not so good to hear that

you have

> done that thing and crashed. It's so HARD to not overdo when we get

those

> notorious good days! One has to be so very patient while crawling

back out

> of that hole.

[Guest guest]

Kulia,

I think that the exercise recommendation is a problem for those of us

with both CFS and FM. For CFS, exercise in general makes us worse, but

for FM exercise is helpful. So, it's kind of a catch 22 and you have to

figure out your own body. I tried a water aerobics class for folks with

arthritis on my rheumatologist's recommendation. I was not able to do

it as the temperature of the water made my hands hurt enough to require

narcotics. But I also found that by the time the class was over I could

barely get out of the pool. I had to rest quite a while in the locker

room and then in the car before being able to drive home and rest more.

It was just too much for me. My new doctor told me that I should do

walking and that the way to know when I was doing too much was when I

had to breathe through my mouth instead of my now. She said that might

be 2 steps and I'd be done. Whatever amount I could do breathing

through my nose was what my body could handle.

Sandrea

[Guest guest]

Morning Kulia, well it really depends on what you have or what combo….MCS of

itself does not prevent the capacity for exercise (and its positive

effects), but if you have ME it’s a very different story. To complicate

things, most folks with ME go on to develop MCI and other allergies and

sensitivities over time. Fibro alone, yes, mild exercise…but who says folks

have been properly diagnosed?? I do think the body is the best guide, it

will tell you what it is best to do in terms of activity. If you are in

heavy rest mode, you could get up and stretch every hour or two. TC, Aylwin

xox

[Guest guest]

Good Advise, Alwyn. I thought CFS is the same as ME. What is MCI?

I know after my neighbors who didn't know I had a health

condition, encouraged me to ride my bike a few miles stating that

it's mostly downhill after you walk your bike past the first hill.

This was years ago, I was meeting my son who went to church with the

neighbors and I was a bit on a MCS and CFS upswing (ooooh

dangerous!!). So I got all jazzed and rode that bike down hill

mostly but then ended up with sinusitus for years in full swing. I'm

happy to report my sinusitus has been nill for the past month since

I gave up bike riding for the past year but the fatigue, headache,

irritability, anxiety, pain, and depression is in upswing. Oh well

can't have it all. Got to have a sense of humour with this. Thank

you Alwyn Sweetie! Love you!!! And thanks to Sandrea and Lou

for their great contributions to caring and helping on this group

and everyone for just getting the energy up to open and read our

posts.~Kulia

>

> Morning Kulia, well it really depends on what you have or what

combo….MCS of

> itself does not prevent the capacity for exercise (and its positive

> effects), but if you have ME it's a very different story. To

complicate

> things, most folks with ME go on to develop MCI and other

allergies and

> sensitivities over time. Fibro alone, yes, mild exercise…but who

says folks

> have been properly diagnosed?? I do think the body is the best

guide, it

> will tell you what it is best to do in terms of activity. If you

are in

> heavy rest mode, you could get up and stretch every hour or two.

TC, Aylwin

> xox

>

[Guest guest]

Hi Kulia, I meant MCS not MCI! All these initials…as to CFS being the same

as ME, that’s a big topic…check out ahummingbirdsguide (website) if you are

interested in the history and politics of all that. Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of kuliaola2000

Sent: Wednesday, February 13, 2008 1:59 PM

To: CFAlliance

Subject: Re: update

Good Advise, Alwyn. I thought CFS is the same as ME. What is MCI?

I know after my neighbors who didn't know I had a health

condition, encouraged me to ride my bike a few miles stating that

it's mostly downhill after you walk your bike past the first hill.

This was years ago, I was meeting my son who went to church with the

neighbors and I was a bit on a MCS and CFS upswing (ooooh

dangerous!!)-.