Wednesday, December 31, 2008


Yesterday I got a call from my neuro's office asking me to come in
and sign some papers for Tysabri. I wasn't sure what papers I would
have to sign because I have been on Tysabri for almost two years. I am also
a patient advocate for Biogen Idec so I was rather confused by this request.

It was below zero in the morning but we decided to get this "paperwork signing"
over early in the day. The office told me their would about 30 pages to read and sign
just like when I was first put on Tysabri.
I get to my neuro's office and I am handed a clip board with 4 pages attached.Plus the fax cover sheet ( I am not sure why I was given this).
The first page has my birthdate twenty years before I was born. Thanks guys!
That is what every woman needs first thing in the morning. To say I'm in my sixty's when
I'm really in my fortys ! When I brought it to the office staff's attention they said
they copied my original form suggesting I was confused by my MS and made a mistake.
Ok, I make alot of mistakes but I CAN guarantee I know my birthday and what year
I was born, especially because my birthday is next Week.
The only info it asked for my insurance info ( which the doctors office verifed early
December when I had an apppt there).
The other pages only required a signature and initials. These pages were all
explaining the risks of Tysabri. In case, as an advocate, I was unaware of these
risks !!!
I was very confused but signed and initialed and we left. When I got home, I emailed
my contact at Biogen Idec and asked why I had to resign this paperwork.
She had no idea why I would be asked to do this. It was NOT necessary or required
by Biogen Idec.
So I dragged my MS body out of bed in sub zero temps to go to my neuro's office
and sign unnecessary paperwork.
Ok, so I have been a little pissed at my neuro lately and this stunt didn't help.
Maybe it is time for a change. I need better care. I deserve better care.
I am always telling my support group they need to stand up for themselves
( so to speak) and here I am being treated like this. I am confused. Maybe
Obama isn't the only change coming.


Happy New Year !!!!!!!!

Tuesday, December 30, 2008

Tysabri Infusion yesterday

Yesterday was my Tysabri infusion. When I walked in I noticed the
chairs were turned. I then noticed my friend sitting in one of the chairs
so I figured the nurses intentionally scheduled all of us MSer's for the same
time to get our Tysabri infusion.
We had tried for months to try and pull it off and I was happy to see it
had happened yesterday. I wasn't really in the mood to go to the hospital
yesterday. I guess you could I say I was in a "funk". Really just wanted to
be left alone. After just a few minutes the three of us were laughing like we
had been friends our whole life. I thanked them for helping me thru my little
"funk". We all ordered breakfast(our hopsital provides food at no charge when
you have treatments like Tysabri ) and I felt like I was having breakfast with
the girls. Before I knew it, our time was up and we were all on our way.
I guess if you have to spend a few hours at the hospital getting a Tysabri infusion
it is wonderful to be with others who are also getting a Tysabri infusion. It was alot of
fun and we all scheduled next month at the same time.
I have to also say the nurses at the hospital are great. They make this experience
so easy. Not that the Tysabri infusion is any big deal, it is just icing on the cake
when you have a staff that really cares.

After my infusion we went to the hospital health shoppe, which is actually off site.
I had a gift certificate I wanted to use. I got a folding cane and a new grabber( to get
things off shelves).
I can't believe I went from a cane to a wheelchair to a walker to an oversized four prong
cane to a stick cane. I thought the folding one might help me when I take my cruise next
Thanks Tysabri for giving me my life back. I have so much to do in a short time.
My to do list is ready and I'm adding new challenges everyday. Look out world, here I come ! Happy New Year to me and to all my faithful readers.


Sunday, December 28, 2008

Tysabri Tomorrow

Tomorrow is my Tysabri infusion. I always look forward to it because it gives
me some "me time". Sometimes there are others who are also getting Tysabri so
we talk and laugh. I'm never sure who will be there because sometimes people have
to cancel due to weather. I only live a few blocks from the hospital so weather is not
really a viable excuse.
I got an email from a friend of a friend who is recently diagnosed with Multiple Sclerosis.
Her doctor believes she has primary progressive and is talking to her about Tysabri.
This just gets me crazy. This neuro should have his license to practice medicine taken away.
The label clearly states it is for relapsing remitting only. What part of that means primary
progressive MS?
I always worry about the patient because Tysabri hasn't been approved for anything but
RRMS. I am also afraid if neuro's keep doing this Tysabri will have more deaths and
risk being pulled from the market again.
It saddens me deeply that a neuro will risk a patient's life when he knows it is not a good
idea. I told my friend how I feel. I know it is not what she wanted to hear but I didn't
feel comfortable telling her I thought it was a good thing to go on Tysabri when her
MS was progressive.

On a more positive note...Anybody making a New Year's Resolution? I'd love to hear from
you. Share your thoughts and inspriations.

And to make it even better the Packers won. Yeah !! And the Jets lost. Yeah !
Ok, so now the NY side of my family all hate me. I was born in NY and I have a special
place in my heart for NY but I really am glad Favre the whiner lost.


Friday, December 26, 2008

Just another snowy day !

This is a picture of our home. We put a yardstick (3ft) next to the snow piled at the end of our driveway. As you can see the pile exceeds the yardstick by about 2 ft.
Welcome to Wisconsin !!
Mark has been snow blowing and snow blowing the driveway and it just doesn't seem to be going anywhere. I don't know what we are going to do with any more snow. Maybe we should all move it to the park next to our home and make sledding for the kids.
We went to the mall today and did some after Christmas shopping. We weren't sure what to expect in the
way of sales and people but it really wasn't too bad. Both
of us really dislike the shopping thing. I did almost
everything online. I actually found gloves that match
my coat perfectly. Everybody commented about it while
we stood in line. They were marked $40.00 and I paid $6.00.
We also bought new sheets for our bed. Marked $140.00
and we paid $46.00. So the deals were there. We really didn't
need much.
All the parking lots were covered in snow and Mark had to drop
me off at the entrance because I couldn't walk in that much slop.
Slop, for those who don't live in snow country, is not quite snow
but just mushy slop. It is something you have to experience.
I think we are expecting more snow over the weekend. It is
not even good snow ball snow or snow man snow.
Have a good day everybody and please pray we don't get
anymore snow.

Wednesday, December 24, 2008

Happy Holdiays!

Hi Everybody !

Short and sweet. I hope everyone has a safe and happy holiday !
We will be snow blowing the driveway again and again and again!

Good grief Charlie Brown, Will it ever stop snowing?


Tuesday, December 23, 2008

It's still snowing !

It's still snowing and I'm putting my boots on and braving the
elements anyway.
We'll see how chipper I am when I return.

Been feeling a little down the past few days. Everybody talks about
spending time with "family" and I know mine ( the DNA part not the wonderful
married part) doesn't really care or doesn't really know me anymore.
Since my diagnosis of multiple sclerosis and my mom pretended she also had it
things have gone from bad to worse.
Every year I think things will change. Every year somebody encourages me to
believe they wll change.
So Sunday I was feeling down. Yesterday the most beautiful bouquet of flowers
arrived. I thought Mark had sent them but the card was addressed to both
of us.
I carried them to the kitchen table and read the card.
They were from Mark's brother and his family. I called my sister in law to
thank them and had a wonderful conversation. Just getting caught up.
This very kind gesture couldn't have come at a better time. It reminded me
that "family" isn't DNA but the people who come into your life and become
a family. I am truly blessed for marrying into this family.
We are dissapointed we can't be there for Christmas but traveling around
the holidays is just too stressful for me. Maybe in a few years when I am
feeling more confident but this time of year brings out the nutty, rude and
downright stupid travelers and I don't have the patience for that.

Ok, I have one boot on. Wish me luck. There is probably about 4 ft of snow
piled up in some parts of our yard.


Monday, December 22, 2008

MS Bear Hug

This is a product off my website
These adorable bears symbolize the infamous MS Hug we all experience.
Bears are 17 inches long and very squishable. You can't help but smile when you see them.
Each bear has an Orange Ribbon with Blue Imprint tied around it's neck imprinted with logo and name.
The bears come in many colors. Each color listed separately.
Not for children under 3 years of age due to small eyes on bear could be a choking hazard.
Wouldn't you like to give the bears a good home?
With all the stress from the holidays I could use this type of bear hug!

He made it home!

Mark finally made it home yesterday late morning. It was about 10 below
zero and the wind chill made it feel even colder.
He is feeling better from the bout of food poisoning he got in Europe.

For as cold as it has been my MS body is holding up well. Last night I couldn't
sleep though. Tons of things going thru my mind.
I have so much to do and very little has to do with the holidays. Just a lot
of business stuff I didn't get done last week. I have a few new products
to add to the site and tweek a few Amazon items.
I am very tired but I will keep pushing myself as long as I have to.
My to do is getting some items checked off and that will keep me going. I
usually try to do the ones I don't want to first but I ran into a few snags
with those so I'll knock off as many others as I can.


Saturday, December 20, 2008

Stuck in Chicago

Mark made it from Europe to Chicago where he is stuck til morning.

I'm not sure what we are expecting in the way of snow anymore because the
forecast keeps changing. Anyway, I am kind of prepared to shovel more in
the morning.
My MS body is still hurting from the workout yesterday but I really don't
have a choice. My neighbor will be here to do the very long driveway and I'll
do what I can with the backyard.
If we keep getting snow like we have been the dogs will be able to step over
the fence. I don't really know where to put all the snow. I just hope Mark doesn't
have to do much when he gets home.
He has informed me he has food poisoning. Not too much flying, especially from
Europe when you are sick to your stomach.
At least he can get some rest before he attempts another flight.


Trying to get home

Mark is trying to get home from Europe today. It doesn't look promising.

We are expecting another snow storm tonight about the time he was scheduled to
land from Frankfurt, Germany.
I have no way to contact him except I did give him the heads up yesterday and
suggested he bring some snacks with him because he was probably in for a long night.

We got about a foot of snow yesterday and my neighbor (Bless him) snow blowed all that muck
off the driveway and porch. I did the back steps and porch TWICE just to keep
up with it. Ripley, my big dog who is old and has arthritis, had a really hard time
getting down the stairs at 5:15 am when I first took them out.
I ran, pardon the pun, down the steps in my PJ's, my ski coat and fuzzy hat ( that Noelle
hates) and slippers to help him. Don't tell the fashion police.
They sat in the middle of all that snow and watched me clean the steps.

I had to do it again just a few hours later but this time I just did it with my hands.
My back hurt so bad last night.

Last night, about 11 pm my cell phone rings. It was in the other room charging. I
stumbled out of bed and over the dog to retrieve it. It was United Airlines changing
my husbands flight. Duh? Why are they callimg me? Great way to take care of a
frequent flier.

I left him a message because he was already in flight. It appears they are cancelling
everything from Chicago to Milwaukee tonight because they have him booked
on a flight tomorrow.
It is only a two and a half hour drive but not in the snow. Besides his car is in
Milwaukee. They do offer a bus service to Milwaukee but not always in the snow.
He could also rent a car. Boy that is comforting. Let's rent a car, not well maintained,
and doesn't handle well in the snow and drive home.

I have a feeling I am in for a very long and frustrating night.


Thursday, December 18, 2008

My sick dog and Tysabri

Last night I was awakened by the sound of my dog getting sick. Oh, that is always
so fun. It was 2:30 am and she must have been sleeping facing the wall because it
was all over the place.
It's not like I have balance issues, especially when I am not quite awake. Anyway, I ended
up taking them both outside and cuddled up with the sick one til she went back to sleep.
I don't ever want to hear I'm not a mom. She is feeling better now but a little groggy.
I have meds to give her because this seems to hqppen on a regluar basis.

So, to change topics I heard that another person developed PML from the use of Tysabri.
As always, the rumor mills run wild. I have my reliable sources about Tysabri and so I am
not panicked about it happening. Tysabri, as I haveclaimed many times, has changed
my life. I can't see it being taken off the market because it has helped so many people.

I also answered an email from another Tysabri advocate needing a little pep talk.
This is a really rough time for alot of people. The economy sucks and it is the holiday
season. Most of us don't have the money to spend on a better holiday. I am pretty creative
and I plan to have a great Christmas and make it look like I spent a million bucks,
Ok, not quite a million. I am known to stretch a dollar for dinner and make a gourmet
meal. Just a knack I have.

It got all the way up to 10 degrees today. We are expecting alot of snow tonight
and I'm hoping my neighborhood snow elves will shovel me out tomorrow. I'm
sure I'll be shoveling the back porch at 5:30 am so the dogs can get down the stairs.
If anybody would like to join I'm sure I can find another shovel.


Tuesday, December 16, 2008


Oh and I forgot to answer the question " Why isn't Goldie gold?"

Okay, so when we got her she was this little ball of gold fur with a
big black bullseye around her nose.
Her top coat came in black so she is technically called a dark sable.

I can't shake the image of how gold she was when we got her.
On the way home, I started calling her my "Golden Bear" after my
favorite golfer Jack Nicklaus. His nickname was the golden bear so
the name stuck.

Hope that explains the name !! She had lots of nicknames including
my little twirp.

Tysabri pictures

Today I received an email from one of the Tysabri Advocates that attended
the advocates conference with a few pictures taken at the conference in Boston recently.

The rest were going to be posted to a facebook page. I'll probably take a look at
them all later. There were several group shots taken of all theTysabri advocates and
all the Avonex advocates plus the Biogen staff but I haven't seen that one yet.
We were such a large group they had to do it on a panoramic camera.

I've been trying to get caught up on the year end stuff of owning a business.
You know the stuff you find every excuse in the world not to do so I haven't
been blogging lately or reading many. I did catch a blog by BRAINCHEESE that
talked about the emails she gets. I thought I was the only one.

Now don't get me wrong, I love getting the emails but some are downright wierd.
Most are genuine. People looking for specific products, asking my advice, suggesting
products,etc. Many are very complimentary of the website. People who know me
know how much time and energy I spent putting this site together.
One person asked me why I don't offer product reviews on my blog and while it got me thinking
I am not sure of the answer.
I would really love it if people would post those type of questions online so it doesn't
look like I'm only promoting a business in this blog. I had a real hard time typing
my first blog. Just how personal do I want to get? I wanted people to know that just
because I have MS doesn't mean I stopped living. I have hit rock bottom with my MS and
I have picked myself up and succeeded at so many things I never thought were possible. (things like owning a business). I feel this change is completely due to Tysabri and alot of hard
work on my part including exercise and a good diet.
The business end of things is a real part of my life and I am leaning toward taking this
suggestion. After all I started the business because so many people were asking those type of questions and I found myself turning away business. It kills me when somebody
buys a product that doesn't fit their needs.
I'm not an expert by any stretch of the imagination but I do use alot of the
products on my site.
I'd love to hear your imput (online hopefully) so I can determine if this is okay
to talk about a product or two from time to time.

Thanks for your input. Have a great cold day. Brrr ! It's below zero out here. I took
the dogs out with so many layers of clothes I could hardly move. Noelle doesn't like
my hat. It pretty fuzzy and furry. Maybe she thinks I have a dog on my head. hehe!


Saturday, December 13, 2008

Holiday Card

I just posted our holiday card for this year. We always do a fun card.

The actual card that was sent had three small photo's underneath the
large group photo. On the left was a picture of me skiing last January at the
adaptive ski program.
On the right was Mark skiing on our trip to Reno/Tahoe
also last January.
And in the middle was an adorable picture of our beloved Goldie. She is sitting on the grass barking and looking up. If I remember correctly I was teaching the big dogs how
to do an agility course when Goldie ran over and did it by herself the first time.
I'll tell you the big dogs looked and felt a little stupid that the little twirp one uped them.
That's why she was my little girl !!! Always outdoing the other guy. She was so
much like me- a Type A personality and the guts to prove it. I'll try to find
that picture of Goldie.
I have talked about the picture alot so I though you would enjoy seeing it.


Friday, December 12, 2008

I'm so exhausted !

Today was my appt with my neuro. I really like my neuro. He knows I am a fighter
and I am not going down without a fight. We went thru the bascis tests and then he sent
me for the standard bloodwork.
We left his office and headed out to our next errand when we both realized we forgot
to talk to my neuro about an MRI. Hello !! Where is my brain? Oh, maybe it's just the
MS. I couldn't believe it.
We headed out to the vet to buy a $ 40.00 bag of dog food. Noelle, my youngest dog,
has had all kinds of medical problems and this is the first vet who caught it right away.
I am sooo happy Noelle hasn't had a problem with her kidneys, bladder since we put her
on this food so in short I guess I'll pay the $40.00. It seems like Prescription diet is making
a real profit though.
After that we went to Walmart. In case you haven't heard my opinions on this store
let me sum it for you. I HATE WALMART ! There is nothing I like about the store except
they have great prices especially on toiletries. I ran into a friend so it wasn't so bad.
This store just gets on my nerve. The employees are, shall we say, not real friendly,
not real intelligent, don't give a darn. Should I go on?
We then headed to our insurance agent. We have been with State Farm for as long as
I can remember. Everywhere we have lived we always had a State Farm agent and they
were always great. They have great staffs and I never felt like I was bothering them.
This office is great. We had all that LLadro to add to our policy and we had to tune up
the business insurance. I remember once Mark was out of town for a long trip and I had
to call them for some reason and they offered to take me to the grocery store if I needed.
Now that is above and beyond.
We headed home for a little bit after grabbing some sandwiches for lunch. Mark had
a conference call. I know what you are thinking "Isn't Mark on furlough this week?"
I guess furlough means working 40 hours a week instead of 60. Good grief people
leave him alone. I lost it Friday afternoon when his cell phone rang again and it was
his office. I am beyond pissed off at this situation. It's bad enough he is not getting
paid, he has actually been working the entire week.
I would have loved his undivided attention this week. And he could have had mine.
We went to the Post Office after his call ended so I could mail the business packages.
I was feeling Christmasy so I upgraded shipping in hopes of items arriving in time for the holiday. Things are moving very slow this holiday.
Our final stop was the grocery store. Mark made dinner and I drank a glass of
champagne. Had cheesecake for dessert so after doing a few things around the house I am
crawling in bed.
I'm pooped. We don't have to leave the house all weekend. I plan to sleep ! My body
really held up today. So much for this MS stuff. I am not going down without a fight.

The dogs were exhausted when we got home. My guess is they ran themselves silly in the snow.

Have a great weekend !


Thursday, December 11, 2008

neuro appt

Tomorrow I see my neurologist. I haven't seen him in 6 months. I think
that is the longest I have ever gone between appts.
When I was at my worst, I was seeing him monthly, then every couple of months. It
was not until I started Tysabri that the space gap between appts lengthened.

Now it has been six months and I couldn't be happier.
I do want to discuss a MRI with him. They suggest regular MRI's when you are on
Tysabri and for me it has been a while. He is not a big fan of MRI's but I am
thinking we need to monitor things closer because I am on Tysabri.
I'm really not concerned with the results of new lesions and old lesions.
I know that being on Tysabri has changed my life. I can do things again I
never thought I would do again.
I can also do new things like last January when I learned to snow ski
standing. Tysabri rules !!
I have a whole list of things I still want to do. Owning a business was one and I
am enjoying that. It is a little slow, probably due to the economy but I am happy
just having it. It fits in my lifestyle very well. for the new year, I have been looking
at adding a few new products. Anybody looking for anything in particular?

I got an email the other day about heating vests for people who are sensitive to
the cold. Thanks Karen for sending me an email about that.

So, has anybody thought about their New Year's Resolutions yet? I'm going to
learn how to use this nifty exercise bike we bought yesterday.
I little more of a challenge than I thought it would be but I like a challenge.

Have a good day everybody. Stay warm !


Wednesday, December 10, 2008

my MS hung in there today

Today Mark and I did so much I thought my MS legs were going to
collapse right out from under me but they didn't. I am so proud
of myself for pacing myself and keeping up with the workload.
It was 5 degrees when we left the house to start our errands.
Yes, for you Floridians I did say 5 degrees. My friends in flroida always
brag about their weather.
Mark is on furlough this week so we had a laundry list ( including laundry)
of things we needed to get done. First we went to the UPS store to mail
the final package of gifts to family. Then we went to the cheese store
(Casa Anna's here in FDL) and bought the mandatory cheese gifts for family.
Everybody we know wants cheese from Wisconsin for Christmas. Go figure !!

We proceeded to go to my doctor appt. Something I have been trying
to keep out of my mind for the last six months. I had surgery last Thanksgiving
because of a biopsy that didn't come back good. We'll just say that because I
really don't want to discuss all of my private medical problems. I should get the results
the early part of next week. Mark will be in Europe probably when I get the results.
Let's just hope everything turns out okay. Meanwhile it will go right back into the
back of my brain. Until I have something to worry about I will try and forget about it.

After my Doctor appt we went to lunch. We ate at the restaurant that was
suppose to host my MS Support Group party last night but we cancelled because of
the weather. Anyway, I booked a day in January. It will be our regular MS support
group meeting day except it will be at a restaurant instead of the hospital.
I had a grilled cheese because I really needed comfort food. Ya know what I mean !

After that we went to pick up my prescription and went to a sports equipment store
where we purchased a gift to each other, An exercise bike. I really feel my MS will
now enable me to exercise more often and differently than I am currently doing.
I do alot of exercise now but I need something to strengthen my legs and I am hoping
the exercise bike will really help my MS not hurt it.

I know most doctors don't believe in exercise but I don't listen very well to negative
people. Besides the only way to strengthen my weakened MS legs is to push them
just a little bit more each day.

When we finally made it home I started laundry, made the bed and crawled in it
and fell asleep. Boy did I need a nap. 30 minutes and I am a new person.
Mark, however, made dinner. There is something to be said about a man who can cook.
Now he is putting together our "eay to assemble" exercise bike. It's a good thing
he is an engineer!

Another day of MS and I conquered it head on. Go away MS, I'm not letting you
intrude on another moment of my day.


Tuesday, December 9, 2008

It's snowing and snowing and snowing !

We woke up this morning to a news report that we had 5 inches of snow. I'd like to find
that area in our very small city that only got 5 inches of snow.
It was more like 8 inches and it has been snowing all day long and is still snowing.

Mark has snow blowed the drive TWICE. Now I do believe, Sherlock, that means we
got more than 5 inches of snow. Maybe the weather people have a different type of ruler
with the first three numbers removed ( possibly for safety reasons) or possibly
they can't count all the way to 8.
Now, folks, I can count to 8 in about four languages.
Mark is exhausted. He is on furlough this week. The company is actually on furlough
nest week but he will be in Europe so they made him take this week off without pay.

Monday morning the cell phone goes off, Tuesday he has a conference call. What part of
furlough do these people not get?? At least let him take a week off without the
phone calls, conference calls, meetings, etc. At least let him spend some time with me.
He travels alot, away from me, so let him take some time off please. He deserves that at the very least.
I made french onion soup from scratch this morning so when he came in from snow blowing the driveway he could have something hot ( besides me, haha).
I am making veal piccata for dinner. My specialty. It takes alot out of me but it is oh so good !
All the Christmas cards are mailed, a box for a project I have been working on was mailed and the Christmas gifts go out to UPS tomorrow. All my gifts to Mark( which isn't much this year) are wrapped and under the tree and I have absolutely no energy left to do anything.

I'm having an MS moment and I need to calm down. Relax. I think I'll find a magazine and
just park myself on the couch.


Monday, December 8, 2008

MS Support Group Christmas Party

Today I had to make the decision as to whether we should cancel our MS
support group Christmas party.
They were predicting 8-12 inches of snow tonight thru tomorrow.
Okay, with a regular party it would probably be no problem but we are
a group of people with Multiple Sclerosis. I started getting calls early in the
day and then I made the decision to cancel it. Nobody should be driving in that
much snow, especially those of us with MS.
I started calling the group and the restaurant. My big fear was the transport
company would get people there and the roads would turn really bad. Most of my
people who would use the transport service use a wheelchair. And what if we
couldn't get them home.
We can always reschedule the party. We are a unique group so maybe we can celebrate
in January. Maybe even during the day as my co-facilittor suggested. I'll sleep on it
and make some calls in the morning.
Besides the snow it will be really cold. Let's see..cold and snow and MS. Oh what a combo!
My legs hurt already. These are the kind of events were MS Sucks.


Sunday, December 7, 2008

Getting ready for the Holidays

Today Mark, my hubby, put the lights on the tree and then hung the ornaments on it.
I was in the middle of a project for a MS organization plus I really didn't trust my hands
with all those beautiful ornaments.
Many of them are glass and all are special. Mark and I have been married for 21 years
and we have exchanged ornaments each and every year. It is always the first ornament
hung on the tree.
He bought me a beautiful round ball ornament from Amsterdam when he was in Europe
recently. I got him( although it has not arrived yet for some reason) an ornament
shaped like a sheltie dog in memory of our beloved Goldie. The tree looks more and
more beautiful each year. It is a fake tree but a very nice one. Allergies and a male Dog kept us from having a real one. We did have real ones for a while but I couldn't breathe (asthma).

Mark also decorated around the house with nutcrackers ( a gift from his parents) and my snowmen or should I say snow people. I love snowmen. Their faces are always happy and smiling.
I think we will skip the outside decorations this year. Last year it was upseting and disturbing to find someone had vandalized them. We had mechanical reindeer. Someone had smashed the heads of them and left them in pieces. I thank God we don't have kids and they had to see that.
We do, however, live next to a park. I would have a hard time explainig why somebody would do something so mean.
In the past the reindeers were tampered with. As I said, they are mechanical and move.
We woke up one morning and found them doing it on the front porch. Again, I am glad
we don't have kids. It wasn't til 1:00 in the afternoon on a Sunday we noticed.
I wish a neighbor would have told us.
It had been a few years after the " doing it" incident that we put them back out there but last year I has surgery two days before Thanksgiving and really needed a push getting into the spirit of the holidays.
I was so upset I wrote a letter to the editor of our local paper. In it I said it is a good thing we don't have an eye for an eye in this country. The paper called me and asked if I wanted it printed that way and I told them maybe we should delete that line. I was upset when I wrote it.

Anyway, my home is in the spirit. I have all the gifts bought. Tomorrow or maybe tonight I will start wrapping with hopes they are in the mail on Tuesday. The cards will be mailed on Monday.

This will be a busy week. I hope I don't over do it with my MS. My MS Support group's party is Tuesday and we are expecting 8-12 inches of snow. I am not sure if we should cancel. I really don't want people with MS driving in that kind of weather or temperature.

Ho Ho Ho from Wisconsin where it was ZERO degrees this morning. Brrr !


Friday, December 5, 2008

Tysabri Advocates conference call

Yesterday I had a conference call for the Tysabri advocates. There are many things I like about being an advocate for this company. One of the biggest things is how they make us feel important. They always run ideas by us for input. I really feel that is so important and reassuring we are being heard.
We are such a diverse group of people but yet they let everybody express their opinions.
As many of you know, my success with Tysabri has been tremendous. I would have never in a million years ever thought I would be involved with a drug company in this role.
I, personally, believe we are an overmedicated society. I take very little meds for my MS.
Only the Tysabri and a muscle relaxer ( Zanaflex) to help my legs while I sleep.
When Biogen called me and asked if I would be interested in sharing my story,I was a little hesitant. I used to be such a private person and now I'm speaking all over Wisconsin.
I know I made the right decision to become involved in the Tysabri Advocate's program.

Whenever I share my story, I always see people wipe their eyes. I know I have come a long way since my diagnosis and I do beleive it is a large part due to Tysabri. It is nice to have people
thank me for sharing my story. To tell me I touched them, or inspired them. That means alot to me. My husband is probably tired of hearing of my speech, in fact, we often joke he could probably recite it.

I feel like a part of a team that is very special. Not all drug companies are big bad awful people.
Biogen is human and they really care. I appreciate it.

I'm listening to my IPOD as I am typing this. I like to listen to it on the "shuffle mode" so I am surprised by the next song. I started out listening to the Go Go's and now Neil Diamond.
So I'm going to listen to Sweet Caroline. It's a good thing you can't hear me sing !!!


Thursday, December 4, 2008

unpacking the Lladro

Last night Mark and I unpacked some of the most beautiful
treasures I have ever seen.

When we visited Mark's mom, she gave us a beautiful curio cabinet
that his dad had built and the contents which included her collection of
Lladro. (pronouced yad-ro)
Lladro is from Spain and they are figurines made by brilliant artists.
Each one is signed Lladro and numbered. The detail on each piece is incredible,
especially their faces.
We were very nervous about transporting these beautiful pieces, especially in
the snowy weather and alongside a cabinet that could move at any moment
and take them all out. I am happy to report they all made it home in one piece.

Now I have to figure out what they are worth and add them to the insurance
policy. The cabinet looks beautiful in our living room and immediately we could
feel dad's presence. Does anybody know any sources for Lladro values?

Their are 13 pieces in all. We can't decide if the geese came together or individually.
My favorite is the clown. It is extrordinary.
Thanks mom for giving us this beautiful collection and the cabinet. We will take
very good care of each piece.
When I walked by the cabinet this morning I felt like I was being watched. Some of
the eyes look so real.


Wednesday, December 3, 2008

snow elves

We just finished eating dinner and were headed upstairs. It's been snowing
all day and Mark needed to snow blow the driveway so he didn't have to
deal with it in the morning.
As I was walking towards the front door, I heard a noise. I looked out the
window and saw our neighbor shoveling our porch. He had already done
the sidewalks and the steps to our home. They were also working on the
end of the driveway.
I opened the door and started to ask him why he was doing it when he
said they were "snow elves". That is what's wonderful about living in the
midwest. People do things for you " just because". They don't expect
anything in return. This neighborhood is just like that.
Mark has a big snow blower so he is often helping other people out.
In order for us to help our neighbor who helped us out tonight, Mark has to
snow blow the snow in front of the park. Not that our parks dept. would
ever say thank you.
We so appreicate our neighbors, well most of them. Like most neighborhoods
I could do with the old bat who sticks her nose into everybody's business.
If she doesn't know what is going on in your life, she just makes it up.
Get a life !
Unfortunately, I am not able to do much shoveling these days. I love to watch
it snow, have a cup of hot cocoa and snuggle with the dogs and Mark.

Everytime someone does something like helping with the snow, it reminds
me there are still good people in the world. Thanks guys for reminding me.
I think I really needed a reminder today.


Tuesday, December 2, 2008

Extra helping of stress

The past day and a half have been so stressful.
We arrived home from Pittsburgh to find a virus
on the computer.
We have a virus program but it seemed to worm
it's way into the system anyway and it did a job.

We immediately halted the internet but we couldn't
get the system to come back up. We made alot of
calls to Dell's customer service. They were wonderful
by the way. It took several calls because the virus had done
alot of damage and we had to take it step by step
to fix it.
Finally I made the last call to India ( no kidding) and
they patiently walked me thru the last step. I can't say enough
about how good their customer service is.
After I hung up with them I reinstalled all the programs,
the virus software, email, word ,etc.
My head was ready to explode. That's alot of brain power
for a Multiple Sclerosis brain.

We saved almost everything to a backup system but
We couldn't figure out how to save our favorites list
of websites. Our website is on a different server so
it was never affected.
Boy am I glad that is over. My husband made me a
cup of hot cocoa. I'm thinkng I could of used a shot of
Bailey's in it.
Hope everybody had a wonderful Thanksgiving and
enjoyed all the deals shopping both online and at the
malls. I enjoyed it. If you are looking for a gift, please check
out our site. Their is something for everyone.
Monday was my Tysabri infusion and as usual everything
went well. Came home and did mounds of laundry.
Have a great day.