Re: for Dolores

[Guest guest]

Dolores, what is CFID?

Thanks, Gail

[Guest guest]

Chronic Fatigue Infectious Disease.  Started with several viruses.  It became

chronic and attacked several internal systems in my body.  Antivirals like

acyclovir were given for a short term.  Some relief!, but at that time, I had

not heard of low dose, long term antivirals or antibiotics.  So, although I

eventually improved slightly on the acyclovir, I was still very ill with many

relapses.  I believe this was the beginning of my downward spiraling ill

health.  After that, my systems went one by one until I was diagnosed with

Scleroderma and MCTD.  (Mixed Connective Tissue Disease). That is when I ended

up in the hospital with what they thought was pneumonia, but turned out to be

pulmonary fibrosis.  This is a progressive disease of the lung with no cure. The

prognosis was not good and I was given a life expectancy of about 5 months. The

antibiotics stopped the spread  and although there is damage, I still have more

than 50% capacity to

breathe and doing just fine.  Just can't dance as long as I used to.  Hehe! 

I'm 73 with all this illness and I get upset that I can't dance all night like I

used to. Goes to show you that once you regain your strength, you want to act

like a kid again.  Take care~~~Dolores & Mike

From: ONYX8257@... <ONYX8257@...>

Subject: Re: rheumatic For Dolores

rheumatic

Date: Friday, September 4, 2009, 4:36 PM

 

Dolores, what is CFID?

Thanks, Gail

[Guest guest]

Hi Judy,  Thank you for thinking about me.  Yes, we are doing fine.  The

problem is no longer constant but remains intermittent.  I can live with

that.  I am not losing weight, so I must be retaining nourishment.  I am

reading the daily posts and mostly I come in on the newbies.  The rest of you

are doing such a great job and some of the diseases I am not familiar with like

psoriatic arthritis.  Harold has taken care of the latest newbie and doing a

great job.  Best not to jump in too much.  Sometimes too much information at

first can be overwhelming.  Baby steps are easier to follow. 

I have been super busy these past couple of weeks getting ready for lots

of relatives whom I have never met, who are about to descend on my place all

at once.  My own doing, of course, and I am not complaining,.  Just hoping I

can get the yard fixed up in time.  I am throwing a party for my mom who turns

96 in 10 days.  The party is on Aug.7th. and we have a 20x20 canopy to raise

and cement the poles into small buckets.  We also have one of those pool kits

to assemble for the kids to have a ball.  That is 18 round x 48 " deep.  We

also have the RV to move so we make room for the pool.  This is the life I lead

when not consumed with scleroderma. 

 

I, continue to remain in remission and feeling well, but saddened by the news I

received last night that my youngest son, who lives in Hawaii, is in the

hospital with Transverse Myelitis.  That is lateral inflammation of the spinal

chord.  They apparently think it is of infectious origin and I am beside myself

about the fact that they are pumping him full of corticosteroids to reduce

the inflammation.  His wife says he is doing better.  We all know that when

the inflammation is reduced, the pain goes away, but that does nothing to stop

the progression of the disease.  They think it was caused by a virus.  I bet

it may have been caused my a micoplasma.  Right now they are worried about the

scar tissue forming on the myelin sheath and causing paralysis.  Am trying to

reach my daughter to see if we can get him transferred to a New York Hospital

near to where his father and his family live.  He is also being worked up for

Lupus & MS.  He kept

falling and could no longer walk, so his wife took him to the hospital.  I'll

be in touch with them until we get him somewhere we feel he will get the best

of care. 

 

So, if you don't hear from me between now and then, know that I am fine and

still looking after the sick.  This time in our own family setting.  Take care

to all of you.  Keep posting.  I am reading them all and will be back just as

soon as my life gets back to normal.  Whatever normal is or was.  I wonder

that myself.  Take care, My best to all of you, Continue the good works. 

Dolores & Mike 

From: Judkeels@... <Judkeels@...>

Subject: rheumatic for Dolores

rheumatic

Date: Tuesday, July 20, 2010, 8:40 AM

 

Hi Dolores,

Haven't seen you post lately and wondered how you're feeling and doing.

Much, much better hopefully and hoping that issue has disappeared.

Judy

In a message dated 7/19/2010 9:39:50 P.M. Eastern Daylight Time,

maz.aust@... writes:

Hi everyone,

Haven't been on the site lately ,, my recent thing has been the

introduction of some mini flaring & aching over the past 3-4 wks. I

have been asymptomatic for such a long time, although I know consciously

what kind of pain I used to be in but clearly my memory is not exactly

accurate....lol

The latest situation with me is that I have been asymptomatic for 8

months now & a few weeks ago started to get some aching & what I call

mini flares where I had never been sore before. It took me a few days

to realise the only thing that may be affecting this & that was that I

had given up smoking. When I thought back I realised that within a week

of stopping was when I started to get the mini flares; I knew I couldn't

get an appt with my Dr because she was on holiday so to prove my theory

I sent my HB out to buy me a pack of ciggies. I smoked 4 that night, 5

the next morning & by about 1.00pm all the aches & pain had stopped! I

continued smoking the next day then stopped again, within a 2 days the

mini flares started up again. I was amazed so tried the same thing the

following weekend when had a few ciggies & within 2 days the pain

stopped again.

I finally had my dr's appt yesterday where she confirmed that to stop

smoking would certainly have that affect on me. Now I need to visit

the the Naturopath she works with to make sure that's all that's going

on or whether there is something else & depending on the results of the

tests whether yet again my meds need to be tweaked.

Maz,

ps : See, I knew there was a good reason I continued to kill myself...

lol

[Guest guest]

Hi Dolores,

Thanks so much for the update and although I'm thrilled that you're doing

so well and the issue has mostly become a non issue, I feel saddened about

the news of your son.

Let's hope between you and your daughter you can get him transferred to the

NY hospital you have in mind and that he gets immediate and proper

treatment. I also hope both your son and daughter in law realize just how

knowledgeable you are and how much you have to offer them. Make them take you

up on

it all

Have a wonderful " relative party " and birthday celebration for your Mom.

Sounds as if you and Mike have lots of fun stuff planned.

I'll be offline for awhile since my husband and I are taking off for Long

Island where all our relatives live for a niece's 2nd wedding. I always

take my laptop but don't always have time to use it b/c it's too active and no

free time. I try though.

Hope all of you are doing well and it's just wonderful that we all learn so

much through our group.

Yes, I noticed Harold is doing a fab job.

take care

Judy

In a message dated 7/20/2010 10:42:47 A.M. Eastern Daylight Time,

martysfolks2004@... writes:

Hi Judy, Thank you for thinking about me. Yes, we are doing fine. The

problem is no longer constant but remains intermittent. I can live with

that. I am not losing weight, so I must be retaining nourishment. I am

reading the daily posts and mostly I come in on the newbies. The rest of you

are doing such a great job and some of the diseases I am not familiar with

like psoriatic arthritis. Harold has taken care of the latest newbie and

doing a great job. Best not to jump in too much. Sometimes too much

information at first can be overwhelming. Baby steps are easier to follow.

I have been super busy these past couple of weeks getting ready for lots

of relatives whom I have never met, who are about to descend on my place all

at once. My own doing, of course, and I am not complaining,. Just

hoping I can get the yard fixed up in time. I am throwing a party for my mom

who turns 96 in 10 days. The party is on Aug.7th. and we have a 20x20 canopy

to raise and cement the poles into small buckets. We also have one of

those pool kits to assemble for the kids to have a ball. That is 18 round x

48 " deep. We also have the RV to move so we make room for the pool. This

is the life I lead when not consumed with scleroderma.

I, continue to remain in remission and feeling well, but saddened by the

news I received last night that my youngest son, who lives in Hawaii, is in

the hospital with Transverse Myelitis. That is lateral inflammation of the

spinal chord. They apparently think it is of infectious origin and I am

beside myself about the fact that they are pumping him full of

corticosteroids to reduce the inflammation. His wife says he is doing better.

We all

know that when the inflammation is reduced, the pain goes away, but that

does nothing to stop the progression of the disease. They think it was caused

by a virus. I bet it may have been caused my a micoplasma. Right now

they are worried about the scar tissue forming on the myelin sheath and

causing paralysis. Am trying to reach my daughter to see if we can get him

transferred to a New York Hospital near to where his father and his family

live. He is also being worked up for Lupus & MS. He kept

falling and could no longer walk, so his wife took him to the hospital.

I'll be in touch with them until we get him somewhere we feel he will get

the best of care.

So, if you don't hear from me between now and then, know that I am fine

and still looking after the sick. This time in our own family setting. Take

care to all of you. Keep posting. I am reading them all and will be back

just as soon as my life gets back to normal. Whatever normal is or was.

I wonder that myself. Take care, My best to all of you, Continue the good

works. Dolores & Mike

--- On Tue, 7/20/10, _Judkeels@..._ (mailto:Judkeels@...)

<_Judkeels@..._ (mailto:Judkeels@...) > wrote:

From: _Judkeels@..._ (mailto:Judkeels@...) <_Judkeels@..._

(mailto:Judkeels@...) >

Subject: rheumatic for Dolores

_rheumatic _ (mailto:rheumatic )

Date: Tuesday, July 20, 2010, 8:40 AM

Hi Dolores,

Haven't seen you post lately and wondered how you're feeling and doing.

Much, much better hopefully and hoping that issue has disappeared.

Judy

In a message dated 7/19/2010 9:39:50 P.M. Eastern Daylight Time,

_maz.aust@..._ (mailto:maz.aust@...) writes:

Hi everyone,

Haven't been on the site lately ,, my recent thing has been the

introduction of some mini flaring & aching over the past 3-4 wks. I

have been asymptomatic for such a long time, although I know consciously

what kind of pain I used to be in but clearly my memory is not exactly

accurate....lol

The latest situation with me is that I have been asymptomatic for 8

months now & a few weeks ago started to get some aching & what I call

mini flares where I had never been sore before. It took me a few days

to realise the only thing that may be affecting this & that was that I

had given up smoking. When I thought back I realised that within a week

of stopping was when I started to get the mini flares; I knew I couldn't

get an appt with my Dr because she was on holiday so to prove my theory

I sent my HB out to buy me a pack of ciggies. I smoked 4 that night, 5

the next morning & by about 1.00pm all the aches & pain had stopped! I

continued smoking the next day then stopped again, within a 2 days the

mini flares started up again. I was amazed so tried the same thing the

following weekend when had a few ciggies & within 2 days the pain

stopped again.

I finally had my dr's appt yesterday where she confirmed that to stop

smoking would certainly have that affect on me. Now I need to visit

the the Naturopath she works with to make sure that's all that's going

on or whether there is something else & depending on the results of the

tests whether yet again my meds need to be tweaked.

Maz,

ps : See, I knew there was a good reason I continued to kill myself...

lol

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Hi, What part of Long Island?  I lived there from the time I was 19 until the

70's.  Giving my age away Heheeh!  My children were born at Southside Hospital

in Bay Shore.  And for a while I worked at Good Samaritan Hospital while I was

going to nursing school and then went out to town to work at what was then

called St.'s.  I think it is now called St. s.  Or some saint

name, don't know.  My first husband and son's father still live on Long Island

with the rest of the relatives.   I think they went further out to

Patchogue.  I would like to transfer my son to Good Samaritan hospital in West

Islip so he could be near his family.  Wish I still had the apt. in NYC as my

first choice would be NYU. Hospital. 

 

My daughter worked the night shift last night and is probably still sleeping. 

I sent her an e:mail and she will probably call me just as soon as she hears the

news.  Just when my life has started to get some control to it, I find that my

son is now going thru this. This is the story of my life.  I have no breathing

room between crisises.  I am devastated to think that he may be paralyzed for

life.  Well, let's hope we can prevent that.  Have a nice holiday and

wedding.  I know what you mean about getting to your laptop.  I often have to

excuse myself from the group when in that position and go to an internet cafe,

but then I lose track of time, and I don't like coffee anyway so I forget about

it.  The most important thing my son wanted to do in this world was walk his

daughter down the aisle at her wedding on September 25th in Seattle

Washington.  I don't know if that will happen and I know he is hurting over

that.  

 

Well, Judy!  Have a great holiday with family & friends.  And enjoy the

summer, whatever is left of it.  I live in eternal springlike weather and am

loving it.  Would like my son & his wife to come down to Puerto Rico to

convalese before going back to Hawaii.  Or maybe they may fall in love with

the Caribbean and move to the Virgin Islands.  I would love that.  Take care,

Dolores    

From: _Judkeels@..._ (mailto:Judkeels@...) <_Judkeels@..._

(mailto:Judkeels@...) >

Subject: rheumatic for Dolores

_rheumatic _ (mailto:rheumatic )

Date: Tuesday, July 20, 2010, 8:40 AM

Hi Dolores,

Haven't seen you post lately and wondered how you're feeling and doing.

Much, much better hopefully and hoping that issue has disappeared.

Judy

In a message dated 7/19/2010 9:39:50 P.M. Eastern Daylight Time,

_maz.aust@..._ (mailto:maz.aust@...) writes:

Hi everyone,

Haven't been on the site lately ,, my recent thing has been the

introduction of some mini flaring & aching over the past 3-4 wks. I

have been asymptomatic for such a long time, although I know consciously

what kind of pain I used to be in but clearly my memory is not exactly

accurate....lol

The latest situation with me is that I have been asymptomatic for 8

months now & a few weeks ago started to get some aching & what I call

mini flares where I had never been sore before. It took me a few days

to realise the only thing that may be affecting this & that was that I

had given up smoking. When I thought back I realised that within a week

of stopping was when I started to get the mini flares; I knew I couldn't

get an appt with my Dr because she was on holiday so to prove my theory

I sent my HB out to buy me a pack of ciggies. I smoked 4 that night, 5

the next morning & by about 1.00pm all the aches & pain had stopped! I

continued smoking the next day then stopped again, within a 2 days the

mini flares started up again. I was amazed so tried the same thing the

following weekend when had a few ciggies & within 2 days the pain

stopped again.

I finally had my dr's appt yesterday where she confirmed that to stop

smoking would certainly have that affect on me. Now I need to visit

the the Naturopath she works with to make sure that's all that's going

on or whether there is something else & depending on the results of the

tests whether yet again my meds need to be tweaked.

Maz,

ps : See, I knew there was a good reason I continued to kill myself...

lol

[Guest guest]

Dolores, I would love to have you contact me privately - my e-mail is

_Onyx8257@..._ (mailto:Onyx8257@...) - going through a horrific time,

and need your expertise and advise.

Gail