Tuesday, March 31, 2009

But your labs look great!

A very quick update from the world of Caroline's bloodwork:

I had my appt with the rheumatologist to get the results of the 8 vials I recently gave them and according to my doctor, my "labs look great".

In doctor-speak, this means "Obviously there is something wrong with you because your eyes stopped producing tears, but your labwork says you are 100% fine, so we don't know why your eyes just gave up".

So while I currently cannot be given a clinical diagnosis of Sjogren's Syndrome or some other autoimmune disease, according to my doctor it is a watch-and-wait thing now. She says there is a distinct possibility that it will turn out I do have Sjogren's or even Lupus, but as of today neither can be confirmed. Follow up labs in 6 months.

In the meantime I am trying these new things called Lacriserts which look like little grains of rice, that you insert carefully below each eyeball and then they release gel-like substance up onto your eyeball throughout the day. It sure beats having to put eyedrops in every 20 minutes, but they are not easy to put in (they are TINY and if you drop them on the floor you can forget finding them again, plus they are no longer sterile! and the double vision makes putting mascara on hard enough, much less putting tiny rice things into my eyes!!) and they only last 6-8 hours so I usually need 2 sets.

I am trying to be patient but some days I just want to rip my eyes out of my head they hurt so badly from the dryness. Usually I reach the point at night where it hurts too much to keep them open and Chris and I "watch" TV together and he tells me the funny visual things I am missing while I listen.

The good news is that it is the end of March...and my last MS relapse was in mid-late November, which means I have gone 4 months without a relapse! Which after 2008 is a new record! haha
I just know the Copaxone is going to be the right choice for me. Feeling hopeful that it is working makes having to do injections every day a little easier :-) Though I did tell my doctor I was giving myself my birthday off from injections: my present to myself! Everyone needs at least one "mental health" day a year.

This saturday was our second annual Shoe Spraying Party for Team Wearing Red Shoes. I am so excited. We have a really big team this year and I know it is going to be a great walk with so many of my favorite people there and wearing their red shoes! It is not too late to join us:

Cmon, you know you wanna put on those red shoes ;-)

Saturday, March 7, 2009

Awareness Fact #7

On this final day of MS Awareness Week I leave with you this...
There are currently several FDA approved treatments for slowing the progression of MS and the National MS Society recommends treatment with one of these disease modifying drugs as soon as possible after being diagnosed in order to help maintain a FABulous quality of life for as long as possible!

I am so blessed to have a wonderful team of doctors and nurses that help me navigate my treatment options in order to manage my MS and help me to do the things I want to do.

Though there is no cure...yet...I have hope that one day we will know a world free of MS. And on that day I will invite you all to a Wearing Red Shoes Dance of Joy event, in which we will...well, wear our red shoes, and dance for joy that the MonSter has been eliminated forever!!!

Friday, March 6, 2009

Awareness Fact #6

Multiple sclerosis causes a wide range of symptoms. That being said, some of the more common ones are extreme/abnormal fatigue, numbness/tingling, balance/coordination problems, muscle weakness, nerve pain, spasticity, tremors, blurred/double vision and vertigo.

Heat, infection and stress can worsen symptoms and/or trigger relapses.
So I try and stay cool and avoid illness as much as anyone can...still working on that last one. If anyone out there has a cure for stress, I am all ears!!! :-)

Thursday, March 5, 2009

Awareness Fact #5

The way MS does its damge is by attacking myelin.
Myelin is the insulation that surrounds nerve fibers in the brain and spinal cord.

Think of myelin like the insulation around an electrical wire...and MS just bites into it at various places, causing the electrical/nerve signals to get all messed up.

This is also why people with MS are so sensitive to heat. If the body's electrical system gets too hot, it short circuits causing wacky things to happen! Luckily, once the core body temperature returns to normal, usually the system "reboots" and you are back to normal. :-)

Wednesday, March 4, 2009

Awareness Fact #4

Important numbers:
Over 400,000 American have MS.
Over 2.5 million people worldwide have MS.
The majority of people are diagnosed between ages 20-50, though the diagnosis age range is actually 2-75!

Tuesday, March 3, 2009

More events to come!

Just a quick reminder
Tomorrow night, 6-9pm
"Shop for the Cure"
at Cherry Pie: www.cherrypieatl.com

Also, I just got word of a wonderful event being hosted by my new friends Zach & Melissa Polun at the Sweetwater Brewing Company
Saturday, March 28th, 1-4pm.
For details: http://mssocietysweetwater.blogspot.com/

What creative fundraising ideas people come up with!
Beer tasting for MS? Sounds good to me!

Awareness Fact #3

The progression, severity and symptoms of multiple sclerosis are unpredictable and vary from person to person. Sometimes symptoms will appear, then disappear completely. Other times they come and go more regularly. Chris and I have learned an important lesson from this: Always get travel insurance when planning fabulous vacations!! :-)

Monday, March 2, 2009

Awareness Fact #2

Multiple sclerosis is not contagious and it is not fatal.

(This means you can hug and kiss on me as often as you like!)

Sunday, March 1, 2009

MS Awareness Week!

Today marks the beginning of MS Awareness Week.
I am fighting a nasty cold but nevertheless will try my best to post wacky facts about MS every day this week.
Other exciting events happening this week:

"Shop for the Cure"
Wednesday, March 4th
Cherry Pie Boutique
Come shop with us at my favorite store in Vinings and 20% of the evenings proceeds will go to the NMSS in honor of MS Awareness Week!

Yoga in the Park
Saturday, March 7th
Piedmont Park
Yoga for all levels in beautiful Piedmont Park (hopefully with less snow by then!)

If you have an orange MS bracelet, wear it all week long, so if people ask what it's for you can tell them about MS, about your fabulous friend Caroline and invite them join/donate to WalkMS 2009! If you don't have one, let me know and I will make sure you get one!

Fact #1: Multiple sclerosis is believed to be an autoimmune diease, though this has yet to be 100% proven by science. Like most autoimmune diseases, MS affects twice as many women as it does men! We women get all the fun... :-)