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.