Tuesday, November 18, 2008


Bella came BOUNCING in from school yesterday with this:

She is star student this week I asked her what does that mean? She said "It meansssssss I GET TO BE THE LINEEEEEEEE LEADERRRRRRRRRRRR!!!!" (that is very important when your in k-5)

She is very excited about it. She said it lasts allllll week. So she is very thrilled about school this week.

I started off this post with that since that was good happy news and with that cute post of Bella, because we didn't really get any good news yesterday at my neurology visit. I kinda needed a day to soak all this in. I tried all day yesterday to call my mother and SHE STILLLLL hasn't called me back yet. (#$%^) If your not a friend or family you can skip this part you will just be bored... BUT, This will be easier than making 35 phone calls to family and explaining why we may or may not get to do as much with the holidays this year. I KNOW, and don't start. IM NOT happy about it. BUT, I can't do anything about it. IT IS UP IN THE AIR RIGHT NOW. we don't know. IT IS ALL depending on these next few weeks and how things go. They are switching my medications around. My blood pressure was at an OMG level. I wasn't sure if they were even gonna let me come home.
They took me off of one medication and as soon as I get off of it I will start on the new med. My MRI from February vs the recent one... showed no change with the MS meds. no progression... no improvement. which can be interpreted two ways THE POSITIVE, that means it isn't any worse!!!! which is good. Because it can get worse. The negative part and this is the part he kinda was really frowning is.. it wasnt really reacting yet on the interferon. I AM getting more used to the interferon WHICH IS GOOD (Interferon is REBIF) I asked him about some of these other medications. HE SAID NOT NO BUT NO WAY. NOT with me having shingles and the other problems I have he will not let me go there. so that ended that discussion. HE is concerned about the blood pressure being so high and said worse case scenario right now is shingle outbreak and or flu. Holidays are coming up... (you can see where he was going and the tears started rolling) HE STOPPED said well lets just see what happens with the blood pressure when we stop the medication. so that's where we are right now.
HE said that I am leaning towards not being in the RRMS which is a Relapsing Remitting Multiple Sclerosis diagnosis which is what most people have. THAT IS what when you see these people that have a normal life work jobs, do normal things go on their merry way, that is what they have. They have flare ups every so many years and less problems not that I am making light of the disease for them I AM NOT. IT is still serious. He is moving me to Secondary Progressive Multiple Sclerosis which is where what symptoms I have... this is it. Im stuck. THey wont go away. It pretty much isnt going to get better. You just have to learn to live with it and learn to cope. Kinda makes you wonder if I was diagnosed correctly 12 years ago... anyway. You can read more about that by clicking on the link. Maybe it can help you understand and see what we are talking about.
SO it was alot to swallow. ALOT. And Im really soaking it all in still.

We started the decent on this medicine yesterday so hopefully the dizziness and bp will start to go down and that will fix it. (please?)
Thats what Im praying for anyway.

Ok so enough of all that boring medical crapp.

THE OTHER FUNNNNNNN COOL THING IS. I DID get my kit yesterday so I have been playing with that. and ughmm I have a tip for you...
IF your ughmmm gonna make an acryllic album.... and your gonna heat emboss.. remember that acryllic is plastic and it will melt (ya I had a REAL EINSTEIN MOMENT THEIR DIDN'T I?!) geesh!
IT's still cute though. I fixed it thats all Im gonna say about that!

I got the cutest RAK (randon act of kindness) in the mail today. I had won a blog Rak from Scrapbook and Cards today magazine's Blog a while back for some awesome BO BUNNY dotted cardstock. WELLL to my surprise they had some of THEIR CHRISTMAS PAPERS IN THEIR TOOOO OMGOSH> they are sooooo awesome. I cannot wait to play with them.
They ARE SOOOO PRETTY I almost dont want to cut them. THey are so dreamy and magical (to quote Bella) she said Mama "Those need glitter!" She is sooooooo my kid!!!


Ki said...

Oh Bella looks so proud! What a sweetheart!
I'm sorry you didn't get better news from the doctor. Know that you are always in my thoughts.

Denise said...

My heart goes out to you. I am so sorry you didn't get better news. I will keep you in my thoughts and prayers.

On a positive note, what a beautiful and fun daughter you have. I love the excitement of her explaining the perks of being the Star Student of the week. A very special week for her!

Jocelyn said...

First off, Love that Bella Bug! What a cutie and man she gets to Line Leader!!!! How awesome. Hang in there kiddo, I too felt the same way with my diagnosis. They told me had I received the correct diagnosis and had the Thymectomy, they cut me open just like open heart sugery and removed this huge thymus gland, well anyway had they caught it early I could have gone into remission! Meds, do the same thing for me, so just take it one day at a time, get the BP under control and look at the positive! The scan did not show the MS getting worse! I will keep you in my prayers and thoughts! Wishing you a wonderful Wednesday!

It's Just me...Crazy "T" said...

whohoooo for Bella!!!!!! wtg gal!!!

Nancy hang in there gal... you know I luv ya and am praying for you always!

Lissa (aka The Untamed Scrapper) said...

Good gosh Nancy, I wish I could just take it all away from you! You've been through so much. You're way overdue for some good - no GREAT - news.

Little Bella looks oh so proud and proud she should be.

I'm sending you BIG hugs and lots of love,