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.


Saturday, November 29, 2008


Thanksgiving was great. Mark, my hubby, made a turkey for
Thanksgiving dinner. He is such a good cook. We had all the
trimmings but not too much.
On friday, we decided to try our hand at a little shopping later
in the day. We hit a few stores and of course, being in the
Pittsburgh area, we went to Sarris for lunch, kind of lunch.
Sarris is actually a candy shop but they also have an old
fashioned ice cream parlour. Lunch was yummy !
Lots of hot fudge. We also picked up a few candy gifts
for people on our very short list this year.

We will hit the road back home tomorrow. Hopefully the
weather will be better. They are predicting snow in
some areas we will be going thru and I hope everything
goes smoothly. I know our vehicle can handle it. I am
always concerned about the other guy who is impatient
and in a rush and is not paying attention.

We will fill all orders when we get back home. Everybody
seems to understand the extra time for the holiday.

Traveling by car is indeed a challenge when you have
Multiple sclerosis. Your body seems to freeze up after
sitting for so long. I have been trying to do some stretching
exercises to keep me functioning. When I get home I will
be in better shape with all my exercise gear.
Will talk to you when we get back home. Not sure when
we are picking up the doggies.


Thursday, November 27, 2008


Well we arrived in Pittsburgh. Alot later then we had planned.
Getting out of Milwaukee was bad with alot of traffic and the sun
just coming up so it created some problems with glare.
Of course, we expected to hit traffic in Chicago.
Once we hit Indiana the speed limit increased and we were
cruising right along. However, when we got to Ohio the weather
turned bad very quickly. We made a last minute decision to
have an early dinner. We weren't really hungry so we split
a sandwhich. Got our hot drinks and headed out.
We called mom to let her know where we were and a few miles
later everything stopped.
The highway(the Ohio turnpike) came to a screeching halt amidst
the snowy, windy, slushy roads. Trucks, in the wrong lane, came
to a stop alongside us.
We sat there for several minutes and then saw a wrecker trying
to make it down the shoulder of the road. A few mintues later
a second wrecker was on the shoulder.
Still we saw no accident, which meant the accident was a good
distance away.
After moving very slowly, if at all, for the next half hour, a police
car came up the inside emergeny lane and we new we were hosed.
We finally crept forward and saw the accident. A fuel truck
on top of a Lincoln. The Lincoln was horizontal against the back
wheels of the vertical fuel truck.
It was not a pretty site, except it appeared the drivers side was
fully intact and the door was even opened. This meant, hopefully,
that the driver walked away.
After we passed the accident we were back on our way.
A few hours behind schedule, and the snow started to let up.

We finally arrived after being in the car for 14 hours.


Monday, November 24, 2008

getting ready for holiday

We are all packed and ready to hit the road first thing in the morning.
We are headed to Pittsburgh to visit Mark's mom for Thanksgiving.
It is about a 10 hour drive not counting bathroom breaks,meals, traffic
We are both very excited. We dropped the dogs off at the kennel aka
the sheltie rescue. Noelle seems to be so insecure lately. They were
both so exhausted because we had some errands to run and they ran
themselves silly.
We woke up to "a dusting of snow" which means 5-6 inches. Oops ! I think
you guys blew the forecast. I can't wait to see what we wake up to
tomorrow because they are predicting that same "dusting of snow."
It was one of those heavy, wet snows. It was like scooping up lumpy mashed
When we get back home I go for my 23rd infusion of Tysabri. I'll be ready for
it and probably needing it badly.
The Packers game is on so I'll finish watching it before I go to bed and throw
the last things in my suitcase.. I'm pooped and ready for a good nights sleep.

Have a good one everybody


Sunday, November 23, 2008

Mark's home

Well Mark came home from Europe on Friday and I am on my last
load of laundry. Yippee ! Now, we both have to pack for our trip to
I used to travel on business and basically lived out of a suitcase but
now I get so confused as to what to bring and I always forget
Tuesday early early morning we are heading out for a driving trip to
Pittsburgh to visit Mark's mom. We are both excited. Usually we
always like long drives but since this MS thing showed up I am much
more leary of driving and the bathroom situation. I will just have to
plan ahead.
It's probably about a 10 hr drive, not counting bathroom breaks and
meals along the way. We will be packing snacks but if Mark is tired we
will have to stop for a real break. I can't help with any of the driving so
unfortunately he is on his own. I get to be the entertainment committee,
which includes a box of cookies and my pillow.

We should have a good time visiting mom. And hopefully I will have time
to still post. I'd love to hear about your Thanksgiving.


Friday, November 21, 2008

Nice email

Today I got an email from a woman who has been following my
blog. It made my day. She thanked me for sharing my life so
publicly and honestly. I don't have the most exciting life but I
am determined to have a full life.
It was nice that someone is reading my blog and even better
that they were enjoying it.
It took me some time to get the courage to start but now I am
really enjoying it. It is a great release for me to write and even if it
is so public it still feels good.

Mark is on his way home from Europe. He called from the airport.
Believe it or not his luggage is with him. Generally, we wait for
United Airlines to deliver it but not this time. Yeah, no midnight
luggage delivery !!
I just had a glass of champagne so I'm feeling a little like I am going to
tilt over so this will be short. I'm such a cheap date. One glass and I'm
done for the night.
Oh, the dogs are barking. Which means Mark is home. gotta go ....

Have a great day everybody ! I would love to hear from you.


Thursday, November 20, 2008

MS Support Group

Yesterday was my multiple sclerosis support group meeting. We meet every month
over at the hospital. When I arrived, early as usual and intentially early, I found the room
set up like a classroom.
I let out a big groan knowing that I would have to rearrange the room by myself.
We like to meet with the tables arranged in a circle. So, I started rearranging chairs and
moving those heavy tables into the right position. There were two people already there
but unfortunately neither was in a positon to help me except cheer me on. They kept
encouraging me to sit down and I did a few times. I finally managed to get the
tables in a circle, more or less. One table was propped on top of another.

I'm sure I will hear complaints that I didn't leave the room the right way. It's okay
that the hospital didn't arrange the tables properly though. After all, The great and
powerful Cathy, who has MS, can lift and move the tables by herself, which I did.
I was so exhausted and completely out of breath. At least, I didn't have to work out
last night.
The meeting went well. We talked about nothing. Sometimes it is good to just
talk and have no real agenda. The cookies were good, as always.
The Handi Van driver had to walk me to my front door. I was so pooped.

Right now, I could use a nap. It's snowing a bit. Of course, they predicted dry weather.
It is really windy and it sounds like something keeps hitting the house.
My conference call for this afternoon got postponed so maybe I will go take a nap
with the dogs.
Have a good day. Stay warm. Maybe a nice cup of hot cocoa, maybe a shot of Bailey's?

Wednesday, November 19, 2008

MS Walk Meeting

Last night was suppose to be our second MSWalk (National Multiple
Sclerosis Society event) meeting.
I got a phone call mid day from our NMSS rep who is in charge
of this event that her husband had lost his job. I didn't even know
what to say. 22 years with the same company. Her hubby, like mine,
is in a business that has been really hit hard by the economy.

I asked her if she wanted to cancel the meeting. She was trying to
call someone to make arrangements for me to get there. In the midst
of all she had going on she was worried about me.
I told her I would make the call and get the meeting cancelled, which
is what I did. I'm not sure we would have gotten anything done without
her being at the helm.

She is a very strong person and I'm sure they will be okay. They might
need help from family with the finances and I hope they come thru if
called on. I know she is very organized and could probably cut her families
budget in a pinch. She is very creative. My concern is Christmas for the
Trust me, Mark and I have been living on a very tight budget since our
North Carolina nightmare. We just started to get out from under it and it
has been 5 years. I can stretch a buck and make healthy wonderful meals
for very little money. We rarely eat out anymore ( mostly because we do eat
healthy and that is hard to find anymore ) Christmas for us this year has virtually
been cancelled. We chose to spend the money on our traditional holdiay card
instead of each other. I am dissapointed we won't be going skiing this season.
We'll make it work. He still has a job.

I know there are alot of people out there struggling. If you would like to share,
please post a comment( you can be anonymous) or email me.

I started the morning with a call from somebody in my MS Support group, which
I co-facilitate, needing some info. An hour later I was still on the phone. She is
one of those rare people who would do the same for me so I don't mind spending the
time with her.

Have a good day everybody ! Stay out of the cold ! brrrr!!! Today is my MS Support
Group meeting so I have to go out in it.


Monday, November 17, 2008

First Snowfall of the Season

It's Snowing ! It'snowing ! It's snowing !
Ok, so can you tell I love the snow. I just took the
dogs out and they stopped in their tracks as they were going
thru the doggie door. They looked at each other and you could
almost imagine them saying "what's this stuff? "
Then they both smiled and ran for the yard. Round and round they
went, chasing each other playfully. Noelle tried to catch the flakes
in her mouth until she couldn't see anymore. Ripley had the look
he wanted to roll in the grass. After a few minutes, they smiled
and came inside. I always dry them off and if I forget they will
stand next to the towel by the door. Just reminding me. They
weren't that wet, they just like it when I rub them with the towel.

It is very windy so the snow is going every direction. It is
also sticking to the road. It is only in the 20's so we might be in
for some accumulation. Problem is Mark is in Europe. I'm sure
my friend and neighbor will help me out. I'm not good with a snow
shovel. I do the backyard so the dogs can get thru. The big dogs
never really have a problem. My litte one who died recently always
was vertically challenged. Her legs were so short she could hardly
move some days. Noelle usually made a path for Goldie so she could
go to the bathroom under the tree. Her favorite spot.

It's sad to think of a winter without Goldie running around in the
yard. I think she enjoyed the snow the most, just like her mommy.


Sunday, November 16, 2008

Packers Game

I just finished watching the Packers game with the dogs.

I am kind of feeling cold all day so I crawled in bed and
snuggled under the comforter. Although it was a great
game I started to have a really hard time staying awake.

It was just so warm and cozy plus I had two dogs piled
on top of me. Eventually the dogs jumped off the bed and
went to their f avorite corners. I think they were getting
annoyed with me when the Packers scored.
One woke up and followed me into the office. You know,
the one I misplaced the other day. The other is still
sleeping. I don't think any of us slept well last night and dogs
need about 18 hours a day. It must be nice.
I would have loved to take a nap but it was nice to just
lay down for a while.
Mark called about 3:00 from Europe ready to turn in for
the night. It is wierd to say goodnight at 3:00 in the afternoon.

Dinner is made so I don't have to mess with that. I have a salad
leftover from the other night.
I'm glad the Packers won. They needed a win. Of course, it
was better that it was a win against the Bears. Ok, I am sorry
to all my friends in Chicago. I used to live there and know you guys
are as obsessed as we are in Wisconsin.


Saturday, November 15, 2008

"Adopted" soldier coming home

I just got an email that my "adopted" soldier's unit is coming home. Yeah !

I joined a program several years ago where I can "adopt" a soldier stationed in Iraq.
Regardless of your views on the war, these men and women give up alot for our country.

When I first told my husband I wanted to "adopt" a soldier he was quite concerned.
This program match's single people with single people and married people with married
people. He had some concerns when I told him about the program. I remember him saying
"you are going to adopt a married man. " It was pretty safe, We both would have each other's
personal info but the soldier was in Iraq. Not exactly what I would call a threat.
Anyway, when I got the name of my first soldier, My husband was very silent. Her name
was Amber. She left a year old baby at home. Since then I have " adopted" about 12 soldiers. Last year it was troop rotation and I adopted an entire platoon for the holidays.

My committment is a letter once a week and a care package once a month. I could manage
that. I almost always have two soldiers at any given time. At some times, I had three.

I really enjoy this experience. I think it is something every American should do at least once.
It will change your life. They say not to expect to hear back from them because after all
they are there to do a job. I have heard from many of my soldiers and recieved many
letters back.
I usually write about the Packers, my dogs, where Mark is traveling to, my volunteer
stuff, etc. If I hear from them, they share their spouse's name, stuff about their kids ,etc.
They aren't suppose to share what they do or where they are at and I respect that.
My care packages are mostly food, depending on how hot it is there. If I hear from them,
I always ask if there is something in particular they are craving foodwise.
I have had soldiers wanting rice krispie treats, Hot Tamale candies, beef jerky and one
liked healthy stuff like trail mix and energy bars. Most wanted junk and most were
just so happy to get anything.
In the summer months, I send a box of sunglasses that they can share with other soldiers.
I hear they go thru many pairs of sunglasses from the sand.
So I will send an email off to this organization requesting another soldier. If anybody
wants the name of it you can email me for the info. My email is on my profile or you
can use the one on my website.


Friday, November 14, 2008

Christmas Cards

Today I ordered Christmas Cards online. We always do a fun "family"
picture of Mark and I and the "kids" (dogs). I made them last year and
they were so expensive and took so much time.
I realized this year that I just don't have the time to make them. Although
I really enjoyed doing it. With the business and my numerous volunteer activities
it just wasn't going to happen.
First, we had to decide on a theme for our fun picture. In the past we have done
a boat theme, the Packers and all kinds of crazy stuff. I think this year our theme
is perfect but I am not telling anyone what it is.
We took our picture last weekend. It came out okay. We have a special tribute to
Goldie (our little one who died in June). The dogs are so good about costumes but this
year they seem to be fidgeting a bit. I will post it online, hopefully, around Christmas.
I now have to write a recap of this year and boy, has it been a year.
Our mailing list keeps growing as our lives expand. Last year I think we sent 80
cards. Friends come and go so I will delete some and add others.
I am so excited I can't wait to see them. I can't believe it is already November.
Where did the year go?


Thursday, November 13, 2008

Where's the dog?

Ok, so this morning I lost the dog. Not literally, like he escaped down the street
but somewhere in the house.
Usually he is always and I do mean always under foot. He's parked under my feet
when I am on the computer. He is waiting in the bathroom for me when I step
out of the shower.
He has been so clingy lately, I accidentally ran over him with my walker yesterday.
So this morning I can't find him. He couldn't get outside because I had the child
gate up and we were all upstairs together.
I thought maybe he heard a noise and is hiding ( he is a rescue dog and does wierd
things from time to time). I searched all his favorite places, calling his name ( he's
old and I sometimes think he is losing his hearing) and still no dog.
So now, I am starting to panic. Where could he be? The other dog was close behind me
as if she thought she was helping with a search and rescue ( I am training her to be
a therapy dog).
I kept talking to myself, reassuring myself that I would find him and he was fine.

Completely frustrated I sat down on the bed. I heard a groan and recognized it was
Ripley. Ah ha, he was nearby. I heard the groan again and turned to find the dog
snuggled under the covers in my bed.
He looked at me as if to say : "what's wrong mom? I've been here all the time."
Grrrrrrr! I didn't know whether to hug him or scold him. Instead I decided
I would crawl in bed next to him. We watched TV for a bit and at least now I know
another hiding place. Of course the other dilemna, do I tell my husband the dog was
on his side of the bed or mine?

Tuesday, November 11, 2008

Today I spent emailing many of the people I met at the NMSS
National conference last week in Chicago. I still have many more
people to go.
I also spent time working on our upcoming MS Walk. Although it is
in April there are so many things to put in place early. So, I had the
phone in one hand and was emailing at the same time. I know. How rude !
At least I can say I was multi tasking.
I also started to put together my personal page on the NMSS site for
my walk team. We have two people listed and I need to add a third. and
hopefully a fourth. Yeah !

I'm very excited about the walk this year. Although our committee has
shrunken in size. ( That's what happens when one person takes credit for
things they did NOT do) People like and need to feel appreciated.
I called those people who chose not to be a part of it this year and told them
how much I appreciate them. I do understand the time committment, especially
now with the business we started.

Anyway, I made some great calls and we'll see how things turn out.
I am interested in volunteering for the Bike event. I just need to see
if Mark will be in town.

I just started dinner. Baby Back Ribs and the house is starting to smell
so good. I like to start them early and let them cook for awhile. The only
problem is I get so hungry smelling them.

I finished up the arrangements for the Christmas Party for my support group
which I am the co-faciliatator for.

My to do list is getting smaller. Yeah !! Now I have to make bracelets for
the business, make the bed and keep tabs on those wonderful ribs. Too bad we don't
a smell button on computers !! Maybe Mark will make me a Cosmo with dinner.

Sunday, November 9, 2008

Thanks for the business

Hi Everybody,

When I got home from the NMSS conference in Chicago I had seven orders waiting for me.
Wow ! I really appreciate the business and the support.
Unfortunately, when someone purchases from my Amazon link they become the customer
of Amazon. And while a portion of the proceeds goes to the NMSS and/ or MSF I don't have the customer information.
So, I can't say Thank You like I do with my products like the shirts, bracelet etc.
So if you are one of those people who made a purchase in the past week thru my amazon link
send me an email so I can say Thanks.
The shirts will go out tomorrow. Amazon is showing most of their orders have shipped.

Thanks again, everybody. I really love building this business.


Saturday, November 8, 2008

National MS Society Conference

Yesterday I retruned from the NMSS -the National Multiple Sclerosis Society National Conference in Chicago.
My legs got a real work out. I have to admit I am exhausted but not fatigued.
I am pumped. It was a great experience. I will write more about it later in the week.

I learned alot and met some wonderful and inspring people.

I wanted to take this opportunity to thank the Wisconsin chapter of NMSS for inviting me to
this event. It means alot to me to be included with this incredible group of people.

I felt at ease with being there without my husband because I knew I was surrounded by people
who would help me unconditionally if I needed assistance.

Thanks to Dawn for arranging my last minute transportation challenges. The drive home, albeit
a long one, was entertaining with all the singing and checking out the guys or should I say
cookies. (you had to be there).
Thanks Laurie for driving, Amanda and Kris for making me laugh so hard on the way home. Not
always a good thing when you have a MS bladder.

Thanks Denise and Kim and Jeremy and all the other great people I met from Wisconsin.

Thanks Colleen for spending time with me and really listening. And I did learn to Be Bold.

Tuesday, November 4, 2008

Yesterday was my 22 nd Tysabri infusion. When I showed up at the infusion center
I was not in the best of moods. My right leg was so weak and hurt so bad. I did manage to
stumble in with only my cane. I think the leg thing was most likely due to all the stress I have been going thru.
You know what stress does to MS. Things at my husbands employer are not going well.
The economy has hit so many industires so hard. He is a salaried employee and they are
"furloughing" them for 8 days. Could it be a better time with the holdiays coming?
I guess I should be grateful he has a job still. 8 days without pay will be a challenge.
It will definitely cut into our christmas shopping.

His family was so concerend they offered to help us if we needed. I really appreciate that.
It's just going to be tough couple of months.
The craziest thing about all this is that the company selected two weeks to do this furlough.
The only problem is Mark will be in Europe for one of the weeks. I wonder if he is
suppose to walk into the EU meeting and tell them he can't participate in the rule making because technically he is not getting paid. I wonder if he is suppose to answer his
cell phone during those 8 days without pay. Check his email.
Did anybody think this plan thru????????????
Boy, when the economy is better they plan for a mass exodus. I am starting to really regret Mark turning down this other offer.

So, any way I wasn't in a good mood when I arrived for my infusion but when I left I
was feeling better. Another woman I know, who has MS, was also getting her Tysabri so we talked. There was a third woman there whose son works at the same company my husband does and could relate to what I was venting about.

The staff at the hopsital always makes me feel special. No matter how stressed they are they always have a smile on their faces. Thanks. I really needed your smiles yesterday.

Friday, October 31, 2008

Mark is on his way home from Europe. Technically is on a plane and probably sleeping.
It will certainly be nice to have him home again, even if only for a few days. I am not really sure when he leaves again. He puts his itinerary on the bulletin board in the kitchen so I at least know
where he is. It is too hard for me to remember where and when he is coming and going. The bulletin board system works well for me and my MS.

So, they finally finished the street this morning at 6:45 am. I figured out they were out there when the house began to shake. I know I'm not in California anymore and I don't think we moved to Kansas but the house began to shake. I thought I would start seeing munchkins popping up around the room telling me I had killed the wicked witch. Ok, so can you can tell The Wizard of Oz is a favorite movie of mine?
It was still dark out at that hour so I am surprised they could see anything. Now they just have to landscape and that might not be until spring.

I had lunch with my friend on Wednesday. That is always nice to catch up in person. We email each other or talk on the phone but in person is always better. I am so grateful for having people like her in my life. People who are my friend with no ulterior motive. She is a special person.
Thanks Barb for being my friend.

I guess I have to get into work mode. Have some orders to pack up and I am sending the leftover Halloween Candy to my "adopted" soldiers in Iraq. I think I have had enough Three Musketeers. I used to call my dogs theThreeMusketeers but now there are only two. Maybe I will call us the The MS Keteers !! Have a good day everybody. Happy Halloween !

Wednesday, October 29, 2008

Hi Everybody,
I know it has been a few days but sometimes it's hard to find the time to do a blog.
Mark left for Europe again yesterday morning. He'll only be gone a few days this time
which has got to be awful on the body.
Anyway, I spoke to him yesterday afternoon and am eagerly awaiting his call this morning.
The Europe trips are always tough because of the time difference.
We always end our calls with sweet dreams which sounds ridiculous at 3 in the afternoon my time.
I'm having lunch with a friend today. We haven't seen each other for a while so it will be nice
to get caught up. We both have had so much going on and I've trying to avoid going out because
of the construction mess outside.
Monday I have my next Tysabri infusion. It will be #22. wow. Who would have thought I would be excited about going to get my infusion. I really can't explain just how much I love this
drug. My life has changed so much since I started it and my body continues to grow stronger every day.
Don't get me wrong, I still have bad days but before I started Tysabri I has relapses every couple of months. I haven't had an official one since I started 22 months ago. I had a
problem last March when the ditz I asked to pick me up for my support group suddenly forgot.
Yeah right I believe that crap. Folks, if you are going to lie, try to make it believable. I
ended up having to walk 6 blocks with my walker to the hospital where the meeting
was. Luckily, we had the firefighters there as our speaker because I thought I was going to die.
I looked like something the cat drug in.
I'm looking forward to lunch today. It is only in the 30's today and I will have to stand outside for my ride but the chill might feel nice.
Have a great day everybody and don't forget to visit my site
Always a salesperson !!!

Friday, October 24, 2008

We finally got rid of Charter Communications cable the other day and
replaced it with AT & T Uverse. We already had AT & T for our phone service and our internet and we were anxiously awaiting cable to come to town.
Charter is the saddest excuse for a cable company I have ever seen. They seem
to encourage their employees to not tell the truth. I don't want to say they outright lie
but they sure can't answer a question ethically or honestly. I wonder how long it
will take before they figure out why so many people are leaving.
Our last problem happened about a month ago. We were both out of town and had set up their moxi box to tape a few programs. When Mark got home he realized it was not working. We returned it their local facility and was told they were out of stock on this item because, are you sitting down, they were catching on fire. Oh yeah. I guess we feel fortunate that while we were away our box only stopped working and didn't burn down our home. With a lobby full of
disgruntled customers the woman behind the counter announced the boxes were catching on fire.
We had them re boot the system and lost all of the high def channels in the process of them "helping us". Whem Mark returned the box to Charter after AT & T installed their system, he was told that Charter called us two-three weeks ago ( of course they couldn't come up with an exact date) and spoke to both of us during the day at the same time to tell us they had a new box for us.
Ok for those of you who have been reading my blog, how long has Mark been in town the last few weeks? Maybe 2 days of the past two weeks. Who are you kidding Charter? Mark, when in town, works during the day and becasue of the construction on our street and has rarely made it home for lunch. I on the other hand rarely leave the house. I do have caller ID provided
by AT & T that records every call that comes into my home and surprise surprise there is no call from Charter on it.
On a more positive note, I enjoyed watching TV last night. I even recorded a show. just to
say I could. I didn't care what I recorded, I just wanted to record something.
I also didn't care if AT & T was more expensive because it would be worth every extra penny.
But we figure we will save about $40 a month by switching and even more important
the TV actually work's properly. No cut outs of interruped service. No lame excuses when we
call. Charter hold to your hat because AT & T is predicting a windy day.

Wednesday, October 22, 2008


So on Monday I officially bought this nifty device. I am very excited about
the possibilities. I have had to go slower than most in this process but I
am surprised by the results.
On Monday it was rainy and for my 8:15 am appt my legs weren't working
real well. But later that day they seemed less heavy and able to get around
the house easier.
If you are not familiar with this product you should check it out. Don't count
on any help from your insurance company because most are declining coverage
as mine did. My insurance company said it would only coverage this knee device
if it helped my hands and fingers. Ok, so what planet are you people from !!

Anyway, regardless of the insurance company I wanted to find a way and thanks
to Mark's family we are able to do this.
Thanks Mom and Gene and M'Liz for supporting us and helping us be able to
afford this. We couldn't have done it without you. Now, where was my family
you might ask. We are still looking. If they ever are able to be adults about
my MS, I will let you know. A whole different subject.

Friday, October 17, 2008

foot drop

On Monday I have my last physical therapy appointment for the Bioness
Knee Brace. It is not really a brace but I call it that. It has a sensor in my shoe so
when I lift my heel it sends a signal right below my knee. This signal helps my brain
retrain my knee so it bends (what a concept). It really is a funky device. I am a very skeptical
person. It seems that everybody has something to "cure MS' or "help MS" so I was
hesitant to try it until I saw my friend walk on a two by four. She was wobbly but she did it.

I broke down in tears when I saw that. I don't expect miracles with this device but I needed
to see some changes before I made the committment. It is very expensive ( about 6 grand) and not covered by insurance of course. Marks family is helping us pay for it and I am truly grateful for their generosity. I would not have asked unless I was okay with the progress I have been
My leg works so differently. It's hard to explain the changes. I feel it. I have been able to walk
around my home without a cane or walker. I even managed the stairs without my cane.
Ok, so if my neuro reads this I am in trouble. My foot drop situation is getting under
control and that is all I care about. Everybody can be mad at me but I'll do it anyway.

I want my life back. It may take some time but I feel so positive about my future. Between
the Tysabri, this Bioness system and my exercise program I might even walk the MS Walk.

Thursday, October 16, 2008

Yesterday was my MS Support Group meeting. I had a very special speaker lined up and I was excited to hear her.
Gail Renderman has Myasthenia Gravis ( I hope I spelled that right) and although it is not MS it is similar and yet so different. When I spoke to her on the phone the first time, I laughed and smiled so much I thought she would be perfect to come visit my group and she was. Gail wrote a book "Don't drive on the sidewalk" which I put on my website but she brought copies of the book with her that she gratiously signed for us. I don't care where the group bought them I just wanted them to enjoy the book.
She has had alot of medical challenges and is quite the inventor. She has designed something for wheelchair users and I am very excited about her getting it to market. I think she has a winner.
So folks, if you are looking for a good read, pick up her book. And, Thanks Gail for spending
an afternoon with us.
Since I returned from the Tysabri Advocates conference I have heard from many of you. Thanks for keeping in touch. I personally love to hear all the success stories. Not just the big ones but the everyday ones that remind us that we all have the fighter inside us.
I really enjoyed my time in Boston ( wish I had had the opportunity to look around town) and I enjoy my Tysabri treatment even more. That med has literally changed my life.
I got an email from my Area business Manager asking me if I could speak at an upcoming event but it is the same time as theNational Multiple Sclerosis Society annual conference and this year it is in Chicago. I used to live in Chicago and I really like it there.
So, just because I had to say no, please don't stop asking. I love to do those events.
Hope everybody has a great day and as Gail would say " Never Quit".

Sunday, October 12, 2008

Yesterday was my 21 st Wedding anniversary. I'd like to say I was 12
when I got married but that is not the case.

Friday night my husband, Mark, came home with flowers. A beautiful bouquet of
purple roses. Wow, I haven't seen purple roses since I grew them at our first home in California.
He is such a great guy.

Mark left for Europe yesterday morning. At least, I got to spend a few hours of our Anniversary with him. We had planned to go out to dinner Friday night but that got postponed for a couple
of reasons. First, they had just concreted our driveway. It would have been a tricky maneuver
for me to dodge all of that mess and although I joked I was going to sign the fresh concrete
I didn't want to sign it with my face when I fell in it.
The other reason we postponed dinner was that so Mark could pack thoroughly.
Packing for Europe is complicated. Sportscoats for some meetings, casual for others.
The last thing you want to do is show up casual when you should have been dressed
Europe is alot like DC. People actually dress nicely for work. I know when I was in sales and because I sold to the Federal Government people tended to dress better.

I watched a "chick flick" last night with the dogs. One of the dogs isn't feeling well so
we all kind of hung out on the couch. All I needed was popcorn, which my Dr. won't let me eat.

So today, I will fill the rest of the orders from our business
and watch the football game with the dogs. We usually play football during halftime
with some of their toys. When Goldie was alive, she like to be the football. No, we didn't kick
her. We just scooped her up and carried her around the house, pretending to score a

Tuesday, October 7, 2008

20th Tysabri Infusion

Yesterday I had my 20th Tysabri infusion. Everything went well. I was dragging going into it
but I think I overdid on the weekend. Mark is out of town. We picked up the dogs at the kennel and both weren't feeling well. One had diarrhea ( oh fun) and the other threw up ( oh more fun).

Of course, it's not like I have balance issues in cleaning up all of the mess and the dog. My dogs are long haired shelties, I'm sure you can figure it out what the mess was.
Anyway, they are hopefully feeling better. Mark will be home tomorrow.

I actually used my cane and walked into the infusion center. I have gone from using a wheelchair to a walker and now I'm feeling better about just using my cane. Our street is under construction so I thought the cane would work better getting me out of the house. Plus, they decided to fix the sidewalk yesterday and there was fresh concrete.

Over the weekend I attended the NMSS Wisconsin chapter facilitators conference in Wisconsin Dells. It was a long drive but a beautiful one. I met alot of great people who helped me with some of the problems I am dealing with my support group. I got alot of great advice. Thanks everybody.
I had forgotten to pack my muscle relaxer so my legs felt a little heavy. We had a jacuzzi in our room. Not the bathroom but the actual room. I just couldn't resist not trying the jacuzzi. We didn't make the water real hot so it really helped relax me so I could sleep. We also had pink sheets on the bed and we were starting to think we had the honeymoon suite. Our 21st wedding anniversary is next week so it was nice, seeing Mark will be in Europe. I can't remember the last time we spent an anniversary together.

Sunday, September 28, 2008

I just got back from Boston where I attended the advocates conference with Biogen Idec.
I am a patient advocate for Tysabri. I had such a good time. I met so many wonderful people who inspired me so much. I met people who ran marathans, triathlons and a man training for an iron man competition. All of these people have MS. All of these people are so positive. I often feel like I surround myself with so many negative people, I really needed this boost of positive energy. I came home with a longer "to do" list. I finally found some people who share my philosphy of not giving up. I was proud of myself for traveling alone. I also visited one more state I had not been to. My goal is to visit all 50 states.
The Biogen staff was wonderful and the event was packed with information and events. Although I had to leave early (weather and flight problems) I had such a great time. I can't wait til next year.

Tuesday, September 23, 2008

Tomorrow I leave for Boston. I will be attending the Advocates Conference with Biogen Idec.
I became a Tysabri advocate with them late last year so this is my first conference. I am looking forward to it.
I will be traveling by myself, which is always scary when you have a disability. Although this is not the first time I have traveled by myself. I traveled on a regular basis when I worked in sales so I know my way around the airports and what to do if I miss my connection but it is a little more daunting because I have a hard time managing my suitcase, a cane, etc. And then my biggest fear is that the airline loses my walker. Well, there is nothing I can do at this point.
I have my IPOD with me so if anything hiccups you'll find me sitting in a corner listening to Josh Groban trying to relax.

Friday, September 19, 2008

I'm back.. I've had way too many things going on at once. And as we all know multi tasking is not as easy as it once was when you have MS.
Last week, I became a hermit. The week of Sept. 11 is always a difficult time for me. I tried very hard not to watch TV, listen to the radio or go on the internet. But, I had so many calls from people checking on me so it was hard to not think about it. The good thing is that every year it does get easier to deal with. I just hate answering that question " where were you on Sept. 11? "
Grrrrr !! In case anybody doesn't know I had a front row seat.

My support group met Wednesday. We didn't have a speaker. We just talked and shared. It was actually a very good meeting. The negative Nellies didn't show up and the constant interupters weren't there either so everybody respected each other and was able to share.

Tuesday, September 9, 2008

6:30 am and I awakened to the sound of the construction happening on my street. I woke up and thought I was back in California experiencing an earthquake. The bed was moving, the windows rattling and of course, the sound of heavy equipment beeping and pounding.
They are attempting to update the sewer system and ultimately widen the street. Last year they repaced the water main. Now, why they didn't do both projects at once is beyond me. I don't run the city, at least not yet. 6:30 am is a little early to start this project. I realize that most people work but it is still too early.
I am going to attempt to run away from home for a little while today. The Handi Van is coming to get me about 11:30. I have been assured they will be able to get in and out of my street. The question is how far will I have to walk? And what happens if I fall? The Handi Van has been so cooperative. I know my street is not the only one under construction. The drivers are all so helpful and I appreciate their assistance and kindness. County employees that think outside the box. What a concept. Thanks guys, I really appreciate your help.

Tuesday, September 2, 2008

As you can tell by the name of this blog "Navigating the Journey of MS" we are boaters.
We took the boat out yesterday with some friends and took a ride across the lake and down the river to a restaurant for lunch. We have had an awful boating season. In June we had the flood and there was so much debris in the lake we were afraid to take it out for fear we would hit a log. We waited a long time before finally taking it out only to hit something and spin the prop.
After we got it repaired we ran into weather problems. When Mark was in town, it was raining or we had other plans and when we had beautiful weather Mark was out of town.
So Labor Day was a day long overdue. It was 90 degrees and well, we know what MS does in the heat. I actually lasted longer than Mark thought I would but when I crashed, I crashed. After we docked the boat, he took me home to the comfort of my a/c. I felt dehydrated so I ate a peach and curled up on the couch and checked on Hurricane Gustav.
I was so proud of myself for pacing myself and lasting as long as I did under such extreme weather conditions. I am so glad we finally had a nice boat day this season and we got to share it with friends. I am in a little discomfort today because I guess I missed with the suntan lotion. My knee caps are bright red !! Oops! I can't wait for next weekend !

Thursday, August 28, 2008

Last night our support group hosted an MS Health Fair. We had the drug reps from all the MS drugs including Avonex, Betaseron,Copaxone, Rebif and Tysabri. In addition we had NMSS and MSF, and our hospital health shop and scrumptious food.
We invited over 300 people and had a nice turnout for a hot evening in August. We all know about heat and MS. I think everybody who came had a great time. Our phone has been ringing off the hook thanking us for putting on this event. It was our pleasure.
This support group has come a long way. My co-Facilitator and I are really putting in a lot of hours but it is worth it.

Tell us about your support group or your support system.