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Hello again, listers. Well, I've been busy gathering information for my
trip in June and have amassed (sp?) about 12 pounds of paperwork!
It's exciting, but fun.
To mention again, I have MS and was diagnosed some 20 years ago. It has
been a very slow progression, but I am now barely able to stand, and spend
my days in a wheelchair. What I wanted to pass on to other MSers is that I
have been taking the chemotherapy treatment Novantrone. I started a year
ago -- after much research -- and at that time it was not available for MS
patients. My neuro managed to arrange it though and I had four 3 day
hospital trips (every 90 days). I did that for a year, and unfortunately,
had no advantage from the chemo, so when my scheduled treatment for March
came up, I cancelled out of the program. I understand from my neuro that he
has about 70% benefit for his patients. Sorry I'm not one of them, but I do
believe it can help some. The FDA approved it for MSers a couple of months
ago, so insurance will now pay for it. If anyone has any questions on this,
e-mail me off list and I'll be glad to answer.
Other question now.
Does anyone know if there is a ferry from Wales or some western place across
to Ireland. We want a brief trip -- just putting our feet on Irish soil -
and would rather stay south if possible. Any suggestions?
Marina in a dreary, rainy day in Friendswood, Texas
just 30 miles north of Galveston and the Gulf of Mexico
I don't recall anyone by the name of Lambert. We only lived there a year.
I certainly remember Sikeston but as far as I can recall we didn't know
anyone over there.
I was in school the day the schoohouse burned there in Reeves. It was an
old wooden bulding and I can remember that rascal going up in a hurry.
Author of: Watson Is Where It Wuz
Hi! I'm Linda, new to this list. I have what I consider and odd
disability, but perhaps there's someone else out there with the same
problem. I have an environmental allergy which makes it impossible for
me to research anywhere that I may run into exhaust fumes or smokers
(even the smell of cigarette smoke on someone's clothes causes me
breathing problems-I can only visit my brother, who smokes, outside in
the open air) so big cities are out of the question. I also have carpal
tunnel and hip problems so my writing and walking are limited too. But,
I do have an offer. I do volunteer work at the genealogy library in
Kittanning, Armstrong Co., PA. If anyone needs someone to check on
family from that area, please let me know. I can check for you and make
copies. The library has some information for other places in PA, too,
but those resources are limited.
my mom taught her children to write their anger on a sheet of paper . after
we were done we'd have a cup of tea. then we would read what we wrote. by
then the anger was down and sometimes we got a big laugh. the only bad thing
is we never got to express our anger orally and many times should have. its
still used among the 9 of us and we now teach our grandchildren. with 9
children it was a way of controling the fights among us. we are as close as
ever and i am proud of that . so your journal brought all my memories back
,thanks for reminding me of my childhood . some day your journals may
become a wonderful book to pass on . my book will be on our genealogy and
some short memories to keep it with laughter. i am also homebound and it is
lonely. write any time , i'll answer your mail
You didn't say who you are.
My journal is mostly my feelings and my "fibrojourney"...treatments I've
tried, my progress or lack thereof.
I have my genealogy stuff on FamilyTreeMaker and on MyFamily.com And I
have a huge notebook with all of it on paper.
We weren't allowed to verbalize our anger either. So, I let my boys know
that they were free to express their anger as long as it didn't abuse or
downgrade anybody. If they wanted to go to their room and pound their
pillows, what's the harm? I think when we learn to stuff it in, we pay in
the longrun. We were not even supposed to say "I'm down" or "I'm
depressed", or we heard "What do YOU have to be depressed about? You don't
even know what problems are...blahblahblah". And looking back, I still say
that my teen problems and feelings were as real as anybody else's. What
made it worse is that I had to learn to keep it in and pretend to be as
happy as a pig in the mud all the time. lol. I learned to be a good actress
I hope we all have a good night
At 07:44 PM 3/5/01 -0500, you wrote:
> my mom taught her children to write their anger on a sheet of paper . after
>we were done we'd have a cup of tea. then we would read what we wrote. by
>then the anger was down and sometimes we got a big laugh. the only bad thing
>is we never got to express our anger orally and many times should have. its
>still used among the 9 of us and we now teach our grandchildren. with 9
>children it was a way of controling the fights among us. we are as close as
>ever and i am proud of that . so your journal brought all my memories back
>,thanks for reminding me of my childhood . some day your journals may
>become a wonderful book to pass on . my book will be on our genealogy and
>some short memories to keep it with laughter. i am also homebound and it is
>lonely. write any time , i'll answer your mail
At 07:01 AM 3/3/01 -0600, you wrote:
>Hello there, Lizzie is right.I'm also a care giver of 3. If it was not
>for my computer i to would go insane maybe....Sharon.....
I really wonder what I would do with my life without it. It would surely be
You travel about as much as I do. lol.
You're lucky to have grandchildren to keep you company. I look forward to
that, if my boys could just keep a girlfriend. :-)
I could go more if I would use a motorized thingy, but I keep putting it
off, thinking I'll get better. I can go in stores now and then that aren't
too large. But something like Walmart SuperCenter is way too much ground to
cover before my feet and hips give out.
Is your husband just scared to take you places? I know my husband is too
overprotective and worries about me when we're out. I fall a lot...I'm not
ever sure just what my feet and legs are going to pull on me. My husband
does all the grocery shopping too, bless his heart. He's a jewel. I did
all my Christmas shopping online and saved a bundle of money. Tim helps me
in the house a lot, but I try to take advantage of what little energy I
have during the day to do a few things so he won't have so much to do when
he gets home.
I don't watch tv much, but I do use the computer a lot. I paint some and I
write a lot. I'm just about finished with a novel that I'm praying will
interest a publisher somewhere. You guys keep your fingers crossed for me.
The only things I've ever had published were religious in nature, and this
is a whole nuther ballgame for me. :-)
You are SO RIGHT!!! Youth definitely is wasted on the young. My sons are 22
and 24 and they have no idea how to appreciate their boundless energy and
opportunities. It takes us decades to discover what our passions really
are, then our health won't let us pursue it. When we've found ourSELVES
we've lost our health. Life is truly ironic, almost funny.
Tim and I use to plan what we were going to do when our boys were out and
gone. In our fantasy, of course, I was still working. We'd get off work, go
out and eat, go shopping, etc and on weekends, we'd explore all the
historical places we've always wanted to go. Or spend our weekends on the
river just relaxing. Oh well, the couch, the river, whatever. At least our
fingers still work and we can use the computer!!!
Hugs to you all,
At 03:40 AM 3/4/01 -0500, you wrote:
>Dear Diane, I have been disabled myself for over 10 years sometimes its 2 or
>3 months before getting out of the house and that's only to see a Doctor, I
>have 15 grand kids and they help me from getting too lonely it seems like
>one or two comes over and spends the week end which is nice, I have COPD
>and Osteo arthritis I am on oxygen 24/7 I have to use a Wenny Walker to help
>me get around I take a ton of pills every day , I have a wonderful husband
>of almost 41 years but he dose not like to take me any were, do not get me
>wrong he is a truly great guy he dose all the shopping most of the house
>work and laundry, and I have taught him to be a pretty good cook ha ha, but
>he just wont take me any were but to see my Doctors or for Test.. But I do
>take Zoloft, and it helps, I watch a lot of TV he got me a ''satellite with
>224 stations" I love the Travel channel. I have 4 sons and 1 daughter plus
>15 grand kids and 2 great ones, but I think after so many years I am
>getting use to always being home I keep busy I love to draw and play on my
>PC. well that's my life as it is ,the only thing that really bothers me is
>that we wait for 30 years to retire so we can travel and then we can't
>because of my health. It's true you know youth is wasted on the young. LOL
>Bobbie In Michigan
>----- Original Message -----
>From: "Diane Singleton" <tincie(a)usit.net>
>Sent: Tuesday, February 27, 2001 9:35 AM
>Subject: Re: [DISABLED-GENIES-L] No messages
> > Since I'm the newby here, I'll introduce myself. I'm Diane from the
> > Cumberland Mountains in Tennessee. I've been disabled since 94 with
> > fibromyalgia/chronic fatigue and recently found out I have mycoplasmal
> > infection (micro-organism in the blood cells). My computer is my link to
> > society, sanity, support, you name it. I'm looking forward to meeting the
> > rest of you. Maybe you can share some secrets with me....how to avoid
> > feeling isolated, how to avoid depression, etc
> > Regards,
> > Diane Singleton
> > At 05:55 PM 2/27/01 +0000, you wrote:
> > >Hi ... I'm still here too ...
> > >
> > >Lizzie LOVE ... in snowy Taddington, Debyshire, UK
> > >
> > > >I haven't seen any messages in ages. Am I still connected?
> > > >Marina in Friendswood, Texas
> > > >
At 09:57 AM 3/3/01 +0000, you wrote:
> >My computer is my link to
> >society, sanity, support, you name it.
> just write
>it down. I get things off my chest that way ... but I always look about me
>afterwards and find something beautiful to describe and spend a while
>writing about that ... before I'm distracted by other things. I try never to
>leave my desk in a negative frame of mind.Lizzie
That is so true. I keep on online journal and when I'm having an especially
bad day, I go to my journal and just start writing. It's good therapy and
sometimes, when I re-read what I've written in past days, months or years,
I realize what I've learned, problems that have been solved, and ways I've
changed, for the better. I'm a much better human being than I use to be,
more compassionate, tolerant, and not quite as hard on myself as I use to
be. :-) So, there are silver linings to most clouds. We just have to wait
a while before they become visible to us.
I hope everyone has a blessed day.
Hello fellow disable-genies.
When I posted my message -- after seeing no activitiy for ages -- I was sure
that I'd get some answers. And I did.
Some wrote to say -- have a wonderful trip.
Some wrote with great suggestions -- like carry your disabled parking badges
with you -- and take your own scooter
Some have offered to help me locate handi-accessible accommodations.
What a wonderful list. I'm so thankful that you all are there.
I also see encouragement for others who have written in, and advice for
others. That's exactly what this list is for, and I'm so glad to see the
God bless you all --
Marina in cool and sunny Friendswood, Texas
ANDREWS, BOVINGTON, CHALMERS, CROOKS, HANSON, HORE, JONES AND WILKES all in
PS I get rid of some of my frustrations by helping transcribe for the BMD.
If you're at ease on the computer and have any extra time, check them out.
==== FreeBMD - England and Wales - Birth - Marriage and Death Transcriptions
I wonder how many of you have insurance or know that some insurance will pay
to have someone come and take care of a loved one for a few hours in order
for the care giver do things like get out and get their hair done, go
shopping, to the movies, etc.
I know I used to work for Travelers, and if someone had home healthcare
covered under their insurance they had that benefit.
Sometimes just a few hours feeling normal can make a big difference.
I know my sister is my main care giver, and even though I don't need alot of
physical care, just hearing me complain alot is very stressful to her.
Thank God for genealogy@!
There is no need to be ashamed Denise :) I too, have nerve damage in my
shoulders, neck, low back, no feeling in my hands and a knee problem
resulting in osteo-arthritis, from an injury sustained at work. I know how
difficult it can be to be in constant pain-with no respite in sight for
now--so I can empathize with you :)
"Wow, you guys make me ashamed. My name is Denise, and I have nerve damage in
my lower back and legs. They make me be in constant pain...."
Lizzie, you are correct in saying that I am a caregiver too-my husband's
primary caretaker, since his original stroke and aortic valve implant in
1992. He has since had two strokes, the last one two weeks ago, on the
opposite side from the first two. He will be coming home from the
convalescent hospital Thursday. I, too, thank goodness for my window to the
I think the contact I am offered by the computer will become even more
important as his neurologist has indicated along with the stroke, she
believes he may have Diffuse Lewy Body Dementia or Fronto-temporal Dementia,
neither of which are wonderful to have-I came home and researched them
immediately. If either diagnosis is correct, he will require more and more
care as he becomes unable to care for himself. This is a very daunting
diagnosis, and can only be verified at time of death when an autopsy of the
brain is performed. This will result in restricting my ability to get out and
The role of the caregiver can be overwhelming at times. We need to speak with
others similarly situated to learn from things they found assisted them in
caring for their loved ones too.
Sorry this is so long, but I did want to respond, and we are too far south in
San Diego to have felt anything from the earthquake. My heart goes out to
those in Seattle, as my mother-in-law and a brother and sister of my husband
lived in Northridge at the time of the quake there. Thank goodness all of
them and their loved ones escaped without injury. It was still scary, as when
it first happened there was no way to call in as the lines were down. We were
finally informed by a HAM operator who contacted another HAM in the
Northridge area, that they were okay-the Red Cross called much later and
confirmed what we already had found out.
Wow, you guys make me ashamed. My name is Denise, and I have nerve damage in
my lower back and legs. They make me be in constant pain, but it's really
nothing nearly as serious as what all you have.
I've been doing genealogy since I was a teenager. Thank God for the internet
and laptops! It means even though I can't get around anymore, I can still do
research on line.
Hello Lizzie, Hello all!
You're right, I should introduce myself.
I'm Lisa, and I have a neuromuscular disease that's progressive and first
started showing up when I was 9 months old. Right now, it's like I'm
quadriplegic except I have full sensation.
I've only been interested in genealogy for a little while... (Ok, longer
than 30 minutes, but who's counting.) Any tips and approaches would
qeyyoh(a)zdnetonebox.com - email
1-713-590-2340 x8636 - voicemail/fax
---- "Lizzie Love" <lizilove(a)brittlestar.demon.co.uk> wrote:
> Lisa Stapp wrote:
> >I'm here... I just joined though...
> Hi! Tell us about yourself.
> I'm Lizzie LOVE and I am carer to my husband Neil who has a
> fourth-ventricular (against the brain-stem)epidermoid cyst. It is inoperable
> and slowly growing. It affects his speech. walking, and personality
> gives him a tremor of the left hand that renders it unusable for any
> We get by ... Lizzie
To get your own FREE ZDNet Onebox - FREE voicemail, email, and fax,
all in one place - sign up today at http://www.zdnetonebox.com
>I am here too. I joined the list a while ago, but never saw anything and
>wondered whether the list was defunct.
Welcome Susan. Why didn't you post something to tell us you were here? The
list is patchy in its activities, as most of the genealogical work is done
on other lists, but when somebody's got a problem ... or something to
celebrate the list reactivates and we give congratulations, support or
information as needed.
I think, too, that listers with particular disabilities make contact on the
list and continue in private in case they are boring the rest of us, or
maybe it feels a bit too public here.
Most of us are pleased to listen, I think.
>Susan, in southern California-wet and rainy-liquid sunshine the past week.
>Both my hubby and I are disabled. He has had three strokes and I was
>injured at work.
So I guess, that despite your own injury you are the main carer. too. That
is a heavy cross to bear. Advocacy is a very valuable service and can be
quite stressful but very satisfying when you have given a *voice* to someone
who thought they would never be heard.
BTW did the earthquake reach you the other day, or are you too far south?
Lisa Stapp wrote:
>I'm here... I just joined though...
Hi! Tell us about yourself.
I'm Lizzie LOVE and I am carer to my husband Neil who has a
fourth-ventricular (against the brain-stem)epidermoid cyst. It is inoperable
and slowly growing. It affects his speech. walking, and personality and
gives him a tremor of the left hand that renders it unusable for any fine
We get by ... Lizzie
As a non-driver, who has never used an airport I can't help you on the
>(In case you're wondering, I'm getting a car with hand controls. Gutsy,
You bet! One brave lady!
>Second question, we will stay at B&Bs (no family to stay with) and I have a
>B&B book which lists a few accessible homes, but not many.
Where do you want to go after you leave London? I can poke about for B&B
accom. What price per night are you looking for?
>My computer is my link to
>society, sanity, support, you name it. I'm looking forward to meeting the
>rest of you. Maybe you can share some secrets with me....how to avoid
>feeling isolated, how to avoid depression, etc
Well ... you said it! The computer is the life-saver. I would be insane
without it. I am not disabled, but am a carer and unable to get out for more
than an hour or two. People tend not to visit.
... as for the depression ... roll with it. If you've drawn one of life's
short straws you are entitled to feel bad about it. It helps if you can keep
it from disrupting life around you too much. People resent it and get angry
which makes you feel worse. If people don't have time to listen just write
it down. I get things off my chest that way ... but I always look about me
afterwards and find something beautiful to describe and spend a while
writing about that ... before I'm distracted by other things. I try never to
leave my desk in a negative frame of mind.