Re: How is Sandrea Doing??

[Guest guest]

Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I have

been tested and they have confirmed no MS. How are things going with you hon?

Does it take a while for you to 'even out' with this weather change?

Take good care,

STL Jane

" J. Catchpole " wrote:

Hi Jane, you know, people with MS can't stand the heat. Have you been

checked for that? Oh, it's all such a mystery anyway. Anyway I'm glad that

you are picking up! TC, Aylwin xox

[Guest guest]

Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I have

been tested and they have confirmed no MS. How are things going with you hon?

Does it take a while for you to 'even out' with this weather change?

Take good care,

STL Jane

" J. Catchpole " wrote:

Hi Jane, you know, people with MS can't stand the heat. Have you been

checked for that? Oh, it's all such a mystery anyway. Anyway I'm glad that

you are picking up! TC, Aylwin xox

[Guest guest]

Morning Jane, well I never know if I will “even out” as you say, or if the

shift is a harbinger of the kind of winter I’m gonna have…this disease is

sooo unpredictable! I am definitely having a harder time now, plus all the

pain stuff (arthritic/inflammatory) is ramping up merrily <sigh>. Just gotta

ride the roller coaster hey? At least this year I am undergoing some kind of

diagnostic process, even though the docs involved have no clue about ME <BIG

sigh>. We’ll see about the neurologist. Also this year for the first time, I

have a caregiver in place for helping with housework, shopping etc. a few

hours a week.

How goes the good patch for you? Enjoy it hon! TC, Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jane

Sent: Tuesday, September 25, 2007 3:05 PM

To: CFAlliance

Subject: RE: How is Sandrea Doing??

Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I

have been tested and they have confirmed no MS. How are things going with

you hon? Does it take a while for you to 'even out' with this weather

change?

Take good care,

STL Jane

[Guest guest]

Morning Jane, well I never know if I will “even out” as you say, or if the

shift is a harbinger of the kind of winter I’m gonna have…this disease is

sooo unpredictable! I am definitely having a harder time now, plus all the

pain stuff (arthritic/inflammatory) is ramping up merrily <sigh>. Just gotta

ride the roller coaster hey? At least this year I am undergoing some kind of

diagnostic process, even though the docs involved have no clue about ME <BIG

sigh>. We’ll see about the neurologist. Also this year for the first time, I

have a caregiver in place for helping with housework, shopping etc. a few

hours a week.

How goes the good patch for you? Enjoy it hon! TC, Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jane

Sent: Tuesday, September 25, 2007 3:05 PM

To: CFAlliance

Subject: RE: How is Sandrea Doing??

Hey Aylwin - No, I didn't know that was common for MS patients, but yes, I

have been tested and they have confirmed no MS. How are things going with

you hon? Does it take a while for you to 'even out' with this weather

change?

Take good care,

STL Jane

[Guest guest]

Try to avoid pine unless it's been dried properly or it smokes.

Take care of you. Big gentle huggles.

Love ya,

Di

J. Catchpole wrote:

> Hi Sandrea, Well, last year I had troubles coping with the wood. So, this

> year, the person I have coming to help me (paid caregiver who does what I

> need – housework, shopping, whatever) is going to load up the inside woodbox

> (right next to the stove) with appropriate sized pieces and lots of kindling

> every week. I’m not gonna chop or haul a thing.

[Guest guest]

Try to avoid pine unless it's been dried properly or it smokes.

Take care of you. Big gentle huggles.

Love ya,

Di

J. Catchpole wrote:

> Hi Sandrea, Well, last year I had troubles coping with the wood. So, this

> year, the person I have coming to help me (paid caregiver who does what I

> need – housework, shopping, whatever) is going to load up the inside woodbox

> (right next to the stove) with appropriate sized pieces and lots of kindling

> every week. I’m not gonna chop or haul a thing.

[Guest guest]

Hi Aylwin,

I think there is a lot of truth in what you say about how hard it was to

be at the event. I was just talking to my therapist today about feeling

disconnected from the others although I was there and talking etc. And

I do think that I was trying so hard to not show that I was having any

sort of health issues and to be " normal " and that was a true struggle

because I was so totally burned out before I even got there. I think

that it would have been easier to have someone I could relate to more.

But, I also think that some of it is simply because I do not have the

best social skills or self esteem. It is something I work on when I

can, but having this illness makes it much harder to do so in a natural

way. I truly am glad that I went but I guess disappointed at how

totally hard it was and that got in the way big time. Still, if I

hadn't gone I would have been very distressed because it is the only fun

thing I have gotten to do in years and the only " vacation " I have gotten

to have.

Sandrea

[Guest guest]

Hi Aylwin,

I think there is a lot of truth in what you say about how hard it was to

be at the event. I was just talking to my therapist today about feeling

disconnected from the others although I was there and talking etc. And

I do think that I was trying so hard to not show that I was having any

sort of health issues and to be " normal " and that was a true struggle

because I was so totally burned out before I even got there. I think

that it would have been easier to have someone I could relate to more.

But, I also think that some of it is simply because I do not have the

best social skills or self esteem. It is something I work on when I

can, but having this illness makes it much harder to do so in a natural

way. I truly am glad that I went but I guess disappointed at how

totally hard it was and that got in the way big time. Still, if I

hadn't gone I would have been very distressed because it is the only fun

thing I have gotten to do in years and the only " vacation " I have gotten

to have.

Sandrea

[Guest guest]

All wood should be dried at least a year before being burnt indoors. If not, it

will smoke, but also it releases the sap into your chimney. Which if let build

up, can cause a fire. I don't have a wood stove, but I do have a fireplace.

Vickie

" Di ) " wrote:

Try to avoid pine unless it's been dried properly or it smokes.

Take care of you. Big gentle huggles.

Love ya,

Di

[Guest guest]

All wood should be dried at least a year before being burnt indoors. If not, it

will smoke, but also it releases the sap into your chimney. Which if let build

up, can cause a fire. I don't have a wood stove, but I do have a fireplace.

Vickie

" Di ) " wrote:

Try to avoid pine unless it's been dried properly or it smokes.

Take care of you. Big gentle huggles.

Love ya,

Di

[Guest guest]

Morning Aylwin - I understand the roller coaster ride - UGH! It's wonderful you

have a caregiver to help you out some, that must be a Godsend for you?

With this move, I've been doing really quite well until the last few days.

Since my son will be in town this weekend, we decided to have our housewarming

party Saturday. I think my hubby has invited everyone he's ever met (he's very

excited about the new house, very proud of if - he's worked very hard to rehab

this house and it did turn out beautifully!) Needless to say, having been in

here only a couple of weeks, not every picture will be hung nor furniture in

every room, but I do what I can and have to just get over all the little stuff I

won't get done before the party! For me,that is about the hardest part - NOT

having the house picture perfect and being the best little hostess, ya know?

But, what is............IS! LOL I have been blessed with a girlfriend who's

back in town for the first time in 10 years and she is ALL OVER this

housewarming, she bought and sent out invitations, she and her fiancee are

coming over today to help prepare the house and bringing

large amounts of food for it! Set up tables outside, my gosh, she's renting a

tank to set up balloons all around! I think she's into this more than I !!!! I

figure, if I can only sit in a chair for the day, that's ok! Anyone who DOESN'T

know how bad this gets, will get a good view, right? Maybe they will learn

something? LOL

Take good care and I hope this is NOT a sign of how difficult the winter will

be for you hon.

STL Jane

" J. Catchpole " wrote:

Morning Jane, well I never know if I will “even out” as you say, or if the

shift is a harbinger of the kind of winter I’m gonna have…this disease is

sooo unpredictable! I am definitely having a harder time now, plus all the

pain stuff (arthritic/inflammatory) is ramping up merrily . Just gotta

ride the roller coaster hey?

[Guest guest]

Hi Sandrea, yes, I have had those feelings when trying to be at some event,

is why I know the territory! You are out, but paying a heavy price…that no

one sees…and if you have social issues it’s that much harder. I’m still glad

you went though! Sometimes we just HAVE to try…to be human…to do something

normal that we want to do. Good for you for doing it! Try and remember the

fun of it more than the struggle…after all, you DID go and you DID have fun!

TC, Aylwin xox

[Guest guest]

Hope the party goes really well and just have a good time and don't

worry about what isn't done or what you can't do. It is so great you

have a good friend nearby now as friends are so wonderful to have. And

it is great that she is involved in the party. Who better to help out

than a close friend and more power to her if she is really into it.

Sandrea

[Guest guest]

Oh Sandrea, she has been a Godsend..........we have been friends since we were

5, but been out of touch the past 8 years (don't really know what happened??)

ANYWAY, last December, she called, out of the blue and after a few minutes of

conversation, we discovered we BOTH have ME and Fibro!! Can you believe it?

She's more the Fibro end and I the ME end, but still? How strange is THAT?

The party went well, thanks to her........she came over early, as soon as she

heard me on the phone. It was a " bad " day for me, couldn't speak well, function

well, certainly couldn't hostess well.........and she said, " I'll hop in the

shower and be there in 1/2 an hour " ......God love her, she didn't do her makeup

or hair or anything, and she was going to see people she hadn't seen in 10 years

or more! She was having a " good " day and came to my rescue. Took care of some

pre-cleaning and then took care of everything like cleaning up as the day wore

on, taking care of the trash, refilling the bowls of food and washing dishes

thru-out the day.......she was amazing! I know I have a true friend in her -

other friends may offer to help, but she dropped EVERYTHING to do so, I can

never repay her for this.........well, maybe I can???? Because of Sharon, the

day was perfect!!!!

Sandrea Kornblum wrote:

Hope the party goes really well and just have a good time and don't

worry about what isn't done or what you can't do. It is so great you

have a good friend nearby now as friends are so wonderful to have. And

it is great that she is involved in the party.

[Guest guest]

Quite true Aylwin. I am glad I went and I did have some fun.

Sandrea

[Guest guest]

Wow that is great... your friend sounds awesome. Maybe on a day that you are

having a good day you can do something special for her? That would be cool.

Wish I had friends like that. Okay.... just wish I had friends. LOL

Huggles!

Vickie

Jane wrote:

Oh Sandrea, she has been a Godsend..........we have been friends since

we were 5, but been out of touch the past 8 years (don't really know what

happened??) ANYWAY, last December, she called, out of the blue and after a few

minutes of conversation, we discovered we BOTH have ME and Fibro!!

[Guest guest]

Exactly Vickie, that's what I'm thinking. She is only in town (since April) to

care for her parents. She has put her entire life on hold to do so. When I'm

up and about again, I want to take them dinner, a meal my family has made for

years that her family just LOVES! As a small way to show her just how much

she's done for me!

STL Jane

vickie englebright wrote:

Wow that is great... your friend sounds awesome. Maybe on a day that

you are having a good day you can do something special for her? That would be

cool. Wish I had friends like that. Okay.... just wish I had friends. LOL

Huggles!

Vickie

[Guest guest]

That is so wonderful that your friend was there for you when you needed

her. And to be back in touch after all of this time and find out you

have much in common as ell. I'm jealous! LOL

Sandrea

[Guest guest]

-I agree with you Sandrea,

I have a friend that has this DD and some added problems but has

adopted a " Mother " figure so our relationship is not as close as it

could be. In other words, she has someone to come in and cook, clean

etc should she need it and also has 3 young children. My kids are

grown and gone and I to be honest cannot hardly take the over

stimulation of her children when she does drop by.

Since I moved to OHIO from MICHIGAN, My support group/friends were

left behind. I really don't have anyone either. NOt sure if that is

a blessing or a curse yet but it's what it is for now.

God Bless,

-- In CFAlliance , vickie englebright

wrote:

>

> Wow that is great... your friend sounds awesome. Maybe on a day

that you are having a good day you can do something special for her?

That would be cool. Wish I had friends like that. Okay.... just

wish I had friends. LOL

> Huggles!

> Vickie

>

> Jane wrote:

> Oh Sandrea, she has been a Godsend..........we have been

friends since we were 5, but been out of touch the past 8 years

(don't really know what happened??) ANYWAY, last December, she

called, out of the blue and after a few minutes of conversation, we

discovered we BOTH have ME and Fibro!!

>

[Guest guest]

Hi Dutchie/ Dear, wouldn’t it be loverly if we all had a mommy type

nearby to help out with things!! I can hardly take kids these dats either.

Just toasts me out…after I moved, a friend came by with her 5 yr. old (I’ve

known since he was born and love him lots) to help unpack…and he did a big

brat display – it just toasted me out for days! Oh well, no grandkids, so no

worries for awhile anyway…’ve lived in the same place for over 9 yrs. and

I’ve just LOST most of my friends…the very few who remain are my angels

though! It’s actually far easier for me to interact this way as it takes the

least energy and can be done at will, unlike a phone call, or a visit.

Honestly I’m not often up for visits anyway, as much as I wish it were

different. Anyway I do hope that you’re picking up a bit dear. XOX Aylwin

[Guest guest]

It was a VERY strange coincidence. During our first phone conversation in all

those years, she talked quite a bit about things going on with her and then

asked about me, what I was doing now, etc. I started by saying I lost my job,

due to some medical issues, not really wanting to go into all that in our first

conversation. Telling her I had to file for disability and then WHAM! She asks

me " do you have CFS? " I about fell off the chair....of ALL the medical problems

you could have, WHY on earth did she pick that one out of the sky, ya know?

That's when she said, " I have it too, that and FM " ............I couldn't

believe my ears!!! I had called her over the years, but she never returned my

calls. I had no idea why this was happening, so I quit calling. We had been

best friends for 40 years, she was my maid of honor, and now, nothing! I

didn't understand - when I told her that I had called, she said she was living

with a guy who was very possesive at that time, and he wouldn't give her

messages! What a goof.

All she said was, " something told me to call you..........I just had this

nagging that I should call - I guess now we know why " It is wonderful to have

her back in my life again. I'm sorry she is in town for such difficulty with

her parents and such, but I'm SO grateful she's back for my own selfish reasons.

She has someone to vent her frustrations to and for that, I am thankful I can be

there for her!

Sandrea Kornblum wrote:

That is so wonderful that your friend was there for you when you

needed

her. And to be back in touch after all of this time and find out you

have much in common as ell.

[Guest guest]

Well, I truly wish I had some friends around here both for assistance

and for friendship. I have a couple of friends but rarely see them or

hear from them, so I don't really feel like we are friends much any

longer. I know that folks can be too much to deal with sometimes, but I

think I would like to give it a try and have the opportunity to turn

folks down rather than not have anyone at all.

Sandrea

[Guest guest]

Yes, my last couple of local friends are floating away too…not from lack of

love, but just the healthy busy lives they lead. We are miles apart in

lifestyle, and have less and less in common the sicker I get. All I can say

is come for tea, as I can’t really go anywhere or have a party or whatever.

I try to hold up my end by calling or emailing them, but too often these

days I’m the thing they let slide <sigh>, and sometimes I don’t even hear

back. Ah well. I’m your friend, and you are mine. These kinds of friendships

(maintained by phone/email) are much more sustainable for me anyway. Still,

it’s a lonely life. XO Aylwin

[Guest guest]

It is great to have support from this site.

I too lost most of my friends now. As I have to live day

by day. Doesn't work with folks who have to put you on

their monthly planner. I used to do all the work for

the friendships. Going to their houses, traveling etc....

now that I can't no one recipercates to include family.

[Guest guest]

I know I am very fortunate to have Sharon, my party-saving friend, in town right

now. But as winter is settling in, I am sure she will be moving back to her home

in Florida, taking her parents with her soon. I had forgotten how nice it is

for someone to have your back and I will miss her terribly when she goes, even

though we don't get to see each other NEAR as much as we would both like - she

is so busy taking care of her parents, I don't know how she is doing it?

I am going to make an effort to re-connect with some of my friends that live

close by, just to do a spur of the moment game night or something! They know I

cannot be the planner I always was and they understand it will be quite

spontaneous. I think it helps us ALL to socialize once in a while. Is there an

old co-worker, neighbor or one of your distancing friends you can call over just

to watch a movie or order pizza or something?

Sandrea Kornblum wrote:

Well, I truly wish I had some friends around here both for assistance

and for friendship. I have a couple of friends but rarely see them or

hear from them, so I don't really feel like we are friends much any

longer.