Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Sunday, December 30, 2007

My Tysabri Diary...For those of us who are happy to have a love affair with life, here is a terrific song by Celine Dion entitled "Another Year Has Gone By"...this video is nice, but the song is awesome (words below), and I would like to add that even though another year has gone by, it is my hope that we continue this love affair with life and all of its challenges through 2008 and beyond. All my very best to all my friends here for a very safe, happy, forward-looking, hopeful, and healthy 2008! Thank you all for being here, for your caring, understanding, your friendship, and for just being you! Happy New Year everyone...Lauren :)

Celine Dion - Another Year Has Gone By

So many 25th's of December
Just as many 4th of July's
And we're still holding it together
It only comes down to you and I

I know that you can still remember
Things we said right from the start
When we said that this could be special
I'm keeping those words deep down in my heart

Another year has gone by
And I'm still the one by your side
After everything that's gone by
There's still no one saying goodbye
Though another year has gone by

I've never been much for occasions
But you never let another birthday go by
Without announcing how much you love me
But the truth was always there
Right there in your eyes

And we're still holding hands when we're walking
Acting like we've only just met
But how can that be - when there's so much history?
I guess that's how true lovers can get

Another year has gone by
And I'm still the one by your side
After everything that's gone by
There's still no one saying goodbye
Though another year has gone by

Another year has gone by
And I'm still the one by your side
After everything that's gone by
There's still no one saying goodbye
Though another year has gone by

And just for fun:
2007 sped by
2007 has sped by
now we need to face the new year
Now, we need to face 2008
there may be risks involved
There may be risks involved
we may need to face road blocks
We may need to face some roadblocks
so stay alert
So stay alert
share time with friends
Share time with friends
jump over obstacles
Jump over obstacles
with care
With care
and caution
And caution
face challenges
Face challenges
remembered to laugh
Remember to laugh
make new friends
Make new friends (yikes!)
above all, be ready for adventure
Above all, be ready for adventure
stick together
Stick together
and you will be able to go far
And we will be able to go far
very far
Very far
well not quite that far
Well, not quite that far.... heehee
always take time to smell the flowers
Always take time to smell the flowers
don't forget to relax and enjoy
Don't forget to relax and enjoy
never forget to let those dearest to you
And never forget to love those dearest to you

animated happy new year glasses of bubbly
Happy new year everyone! (please don't drink and drive)

Wednesday, December 26, 2007

My Tysabri Diary...
Nothing new to report about my 16th Tysabri infusion today, as I stated before, they are becoming pretty routine now (I like that!). No mudslides and pizza tonight as we are having leftovers from Christmas dinner last night (I taught Ray how to make my pineapple baked ham with maraschino cherries, my sweet potato pie with marshmallows, and my broccoli/cheddar cheese casserole). These three recipes are special and I only make them once a year (errrr, Ray made them this year as I can no longer cook). But they are Sooooo good and so rich! I think he is going to teach his wife how to make them now - heehee.

I was a little worried about leaving Noël home alone for the first time since she arrived here... I was contemplating coming home and finding our little Christmas tree tipped over, with all the ornaments broken that Chuck's wife Sheri had so painstakingly selected. But we only arrived home to find Noël sleeping on my bed with her little mouse...soooooo cute! When she saw me, she immediately jumped into my lap, mouse in mouth-LOL.

I did find out that my small infusion center now has four additional Tysabri patients (all added within the last month!). I wonder if they will be able to handle more because the infusions center today was jam packed full of patients.

I also chatted briefly with another Tysabri patient that was there, but she wasn't in a very good mood (I presumed she was having a bad MS day, as it was pretty cold outside and severe weather changes can definitely affect MS symptoms in a majority of most MS patients). She was also disappointed that she hasn't had any improvements after only four infusions.

I told her to never lose hope and that she might start seeing small improvements by her sixth infusion, but they could happen at any time. I told her that even though I was receiving my 16th Tysabri infusion, my MS is now stable and I haven't had a relapse nor any disease progression in over a year. Tysabri is doing exactly what it was designed to do... prevent further relapses and their accumulating disabilities, including slowing/stopping the disease process with superior efficacy of 67%. I also told her that I never lose hope that I will start to see more small improvements, and I hope to walk again one day. Tysabri = Hope.

She definitely seemed to brighten up a bit, but I still pretty much left her alone after that to contemplate what I had told her, but I also told her I would see her next year, same time, same place (that made her smile again), and if she had any questions about Tysabri, I would be happy to try and answer them (cautioning her that I was not a doctor). We exchanged names, and I left... wanting to get home for a quick bite of dinner, and then turn early.

That's all for now, other than I can hardly wait for tomorrow!

I hope everyone had a fantastic Christmas yesterday... woooohoooooo!

Lauren :)

A very
proud member of

Monday, December 24, 2007

My Tysabri Diary...Merry Christmas everyone!

I want to mention how many of you have enriched my life by your friendship, caring, generosity, understanding, and knowledge. I have only given you a bird's eye view of what it is like to live with MS, to live with its challenges, and what it is like for some patients who continue to struggle with its debilitating symptoms, who are struggling to obtain a diagnosis, and at the same time, are struggling/trying/learning to become their own patient advocate when it comes to their health.

I believe that you have a better understanding than most people do about MS, and you are also experiencing some of the joys that these patients are having thanks to Tysabri. You have so very much to be proud of, proud of yourself, proud of the changes you have made in others' lives (including my own), with wonderful changes yet to come. I am proud of you, and I am proud to call you my friend. I have been blessed to meet some of you personally, and I hope to meet more of you in the future, God willing.

Here is a message that I would like to pass on to you, and which I try to live my life by when times get tough for me, and which might help you keep your life in perspective as well:

If you woke up this morning with more health than illness, you are more blessed than the million who won't survive the week.
If you have never experienced the danger of battle, the loneliness of imprisonment, the agony of torture or the pangs of starvation, you are ahead of 20 million people around the world.
If you attend a church meeting without fear of harassment, arrest, torture, or death, you are more blessed than almost three billion people in the world.
If you have food in your refrigerator, clothes on your back, a roof over your head and a place to sleep, you are richer than 75% of this world.
If you have money in the bank, in your wallet, and spare changein a dish someplace, you are among the top 8% of the world's wealthy.
If your parents are still married and alive, you are very rare,especially in the United States.
If you hold up your head with a smile on your face and are truly thankful, you are blessed because the majority can, but most do not.
If you can hold someone's hand, hug them or even touch them on the shoulder, you are blessed because you can offer God's healing touch.
If you can read this message, you are more blessed than over two billion people in the world that cannot read anything at all.
You are so blessed in ways you may never even know.

*Whether I have known you for many years or a few, In some ways you have been a part of shaping things I do. And now that Christmas has come, I realize anew, The best gift life can offer is meeting people like you. -Author unknown-*

I have been blessed beyond belief in knowing you...thank you all for coming into my life.

Merry Christmas everyone!

Lauren :)

Sunday, December 16, 2007

My Tysabri Diary...Friday, 12 /14...a kitten update...I found another picture (the one above) that looks like Noël...oh my gosh, she's so adorable!
Chuck stopped by this afternoon for a visit with me and Noël...she was on her best behavior and didn't turn his arms into scratching posts like she did mine (little brat, but I adore her immensely), ...with much patience and gentleness, she even let Chuck trim her nails!

Chuck even showed up wearing a Santa hat carrying a small Christmas tree and ornaments for decorating it (which his wife so graciously and painstakingly selected), and even little presents to go under the tree for Christmas morning!!!

Of course, Noël had to help trim the tree (or untrimm the tree by attacking all of the ornaments that he and my caregiver were hanging). We had such a wonderful visit, and even took more pictures of Noël, which need to be downloaded on my computer. Now she is playing with my headset/microphone, so before she eats it for dinner, I guess I better go spend some "playtime" with her.

Love, Lauren :)
A very proud member of

My Tysabri Diary...Just an update from me (this was Friday, 12/7) The picture above is not an actual photo of my kitten, but it is very much what she looks like (she is a little bit lighter grey), but her facial features look exactly the same as the photo above. Lordy, she's just so cute!

I think I'm settling on the name for my new kitten to be Noël.

Last night (Thursday, 12/6- her first night here) was a trip, Noël never stopped crying until I went to bed, and once she figured out I wasn't going anywhere, she proceeded to try and sleep on my face. No matter how many times I moved her, she would crawl back up and try to lay across my face.

When I was finally able to slowly scooch her down below my neck, she discovered my necklace and then went into attack mode!

Today, she's discovered that she likes riding in my lap when I'm in my powerchair (good grief), and she has finally slept most of the day in my lap between the keyboard (although she does keep an eye on the blinking cursor).

When she finally had her first meal plus fresh water this afternoon, after her surgery yesterday, Ray and I cracked up because she ate and drank like there was no tomorrow! (Goodbye manners and politeness, hello to kibble everywhere).

Now she's on my lap, passed out, wedged inbetween the keyboard and my ribcage..Let's hope she stays that way for awhile so I can get some work done on my computer - heehee.

Here is a song by Celine Dion, that to me epitomizes what Christmas is all about.

(below are the lyrics, this is the live version so you will probably want to turn your speakers way up)

O Holy night, the stars are brightly shining
It is the night of our dear Savior's birth
Long lay the world, in sin and error pining
Till He appeared and the soul felt its worth

A thrill of hope, the weary world rejoices
For yonder breaks, a new and glorious morn
Fall on your knees, O hear the angel voices

O night divine! O night when Christ was born
O night divine! O night O night divine!

Truly He taught us, to love one another
His law is love, and His gospel is peace
Chains shall He break, for the slave is our brother
And in His name, all oppression shall cease

Sweet hymns of joy, in grateful chorus raise we
Let all within us, praise His holy name

Christ is the Lord!

Then ever ever praise we
Noël, Noël

O night, O night divine
Noël, Noël

O night, O night divine
Noël, Noël

O night, O holy night

Happy holidays to all my friends here, and their families (with a very special thank you to Chuck and John).

May each of your holidays be wonderful, and may 2008 be the year that brings you health, wealth and happiness.

I send this on to all of you with all my love. Merry Christmas everyone.

Love, Lauren :)
A very proud member of