Sunday, May 31, 2009

As promised...

As most of you know by now, I have trouble with my eyes. After 2+ years I still have constant double vision, which is sometimes corrected by prism glasses and/or by closing one eye. Sometimes not. I also now have this severe dry eye thing (cause still unknown, but my docs are now referring to me as "Possible Sjogren's Syndrome" which cracks me up. I mean, can I also be a "Possible Rock Star"? or "Possible Queen of the Universe"? I mean, really aren't I a "Possible" anything-I-want-to be??? haha. Certainly I would choose something better than "Possible Sjogren's". I digress....). So the dry eyes are so bad that my corneas have become involved and I have to have them checked alot for signs of scarring, blah blah. So when your eyes are severely dry they hurt alot and can cause blurred vision to boot.

By about 8pm on any given day I have a lot of trouble seeing. This completely clashes with the fact that, much like my dad and my brother Van, I have always been a night owl. I love night time. I am most often hit with the urge to write after 10pm.

The point (long-winded, mind you) is that I often end up writing blog posts at 11PM with my eyes basically closed, preserving moisture and not being distracted by two of everything on the screen. Fortunately I touch type fairly well. Maybe 80% accuracy or so. But being the perfectionist I am, I prefer 100% when it comes to spelling and grammar! So I have wonderful friends that proof-read for me and correct my typos, so I can better spend my limited eye power on things like, driving to the grocery store and dong my math homework! :-)

One of my "editors" is my dear friend Jen (who many years ago also taught me the power of shift+F7, to which I credit the majority of my A papers in college this past year!). Jen recently edited a post for me and along with her edit, she commented that what my blog needed was some pictures! So last week I took a few around the house of places I escape to when I need zen! Sorry, none of me yet, but maybe I will work up to that. :-)

In my "office" hanging above the window...
the 3 words that get me through good and bad days!

This is Oscar.
We got him and named him when I was 12 years old.
He has been with me ever since, even when I could only afford a tiny apartment, there would be a couch, a bed and Oscar! I still play as much as my hands and eyes will allow and it is truly one of the things that fills my soul with joy! Note that even Oscar has been decorated. Nothing in my house is safe from red shoes!!!

A shot from my office.
I am not obsessed or anything, right?

Standing in the doorway of my office.
My awesome new TV (thanks Chris!), plus several gorgeous Oz posters I have been given over the years (thank you Chris, Betsey and Angela!)

I will try to make more an effort to put fun pics up now and then. Thanks Jen for helping make my blog more colorful with your great ideas! (and sorry I didn't let you proof this one...I wanted you to be surprised!)


Wednesday, May 27, 2009

World MS Day

Today, May 27, 2009 is World MS Day!

Betcha didn't know that...that is probably because it is the first one!
A wonderful group of people all around the world got together and decided to form a global group to help raise awareness about MS.

So help us support the first annual World MS Day by registering yourself on the really cool World MS Map as a "friend of person with MS" or "family member of person with MS". It takes about 30 seconds and you will instantly show up on the map! (You can already see me in Atlanta, GA!) Go to:
Click on Register if you would like to add yourself to the map!

I only wish our map icons were little red shoes so I could truly visualize red shoes taking over the world!!!!

Thursday, May 21, 2009

Finding your zen

I believe my nurse practitioner said it best when she told me,
"Chronic pain is a real doozy."

I don't know that I ever gave chronic pain much thought. Sure, when I heard someone was in pain and that pain never really went away, my heart went out to them. Maybe I even wondered how they did it, how they managed it all. I felt sympathy for them. Sympathy is nice and all, and often all we are capable of. Being able to feel true empathy for someone is quite different and I now feel empathetic to those people that live every day managing some sort of chronic pain.

You don't realize just how much pain stresses your body physically, emotionally, mentally. It can raise blood pressure (which it did to me during my worst relapse last November) and it can cause other sorts of crazy things to happen. Nerve pain can really affect sleep, too, and as all new parents know, if anything can make you feel crazy fast, it is sleep deprivation!

In addition, nerve pain is another "real doozy" as it rarely responds to pain meds (like codeine, percocet, etc). Nerve pain just keeps right on going, no matter what you throw at it. For some people drugs like Neurontin and Lyrica can ease the pain a bit. For others you might as well be throwing water balloons at a forest fire.

Between the herniated disc, the MS and the Keratoconjunctivitis sicca (fancy word for severe dry eye, so dry it also affects your corneas), there is a lot of pain on any given day. I have tried alternative treatments as well as medicine (I prefer Lyrica, which takes the edge off the nerve pain). Biofeedback has been surprisingly helpful. I was skeptical at first and then saw myself hooked up to monitors and literally watched my blood pressure and heart rate slow down, less stressed simply because I was breathing correctly, slowly - the same type of breathing you use as a singer! What an amazing thing! It is a great tool in my arsenal of tools to deal with symptoms and pain.

I have also been doing physical therapy for my disc problem and since then am having far less pain in my left arm. What a difference it makes to not have pain 24/7 and instead have it come in waves throughout the day. It gives you a chance to catch your breath at least!

I think when you have something like pain you can't control with medication, you have to sort of approach it mind over matter. I mean, what choice do you have? You have to find your state of zen. Make peace with the pain. Because being angry at it just raises your blood pressure and makes the pain worse.

In the meantime, I am trying to find my zen, my peace with it all. Peace in living with chronic pain and with a chronic disease that causes horrible relapses with little or no warning. I try and find peace in this crazy economy where instead of once being terrified of bugs, my worst fear is now losing my health insurance. I try to be zen when my eyes are so dry and painful that all I can do is lie with them closed, listening to the television, or to books on CD. I try and find peace when Copaxone Caroline visits, ruining my usual upbeat mood, causing me to feel depressed and hopeless, only to disappear as quickly as she came, leaving me feeling normal and hopeful again. Medicines are crazy things, huh?

Take a moment and find your zen. Close your eyes during your stressful day and take 5 slow, deep breaths. As lame as it sounds it really does help! Or maybe your zen involves shutting the office door for five minutes to call your mom. Moms always have a way of making you feel at least a bit better, don't they? Whatever your zen is, wherever you find your peace, remember it so you can go back and "visit" it whenever you need to.

Personally, I like the deep breathing to manage really intense pain; I often treat Copaxone-induced depression with a movie ticket and big bag of popcorn. Escapism! And when all else fails, I go into my office upstairs (who am I kidding? it isn't an office - it is totally a "craft room") and I work on my scrapbooks, or handmade cards for people's birthdays or I watch a movie on my TV that Chris so graciously bought and installed for me. And slowly, the zen comes. And life is good again.

Even if you don’t have a chronic disease or chronic pain, you gotta take time to find your zen…especially in these times which are tough on everyone. If nothing else, just remember to breathe!

Friday, May 8, 2009


I am sorry this particular post is so late, but just had to take a moment to share...not only was Team Wearing Red Shoes the largest team in the Marietta Walk this year, with 57 members, but we were also this year's top fundraisers as well raising $13,491!!

Thank you ,Thank you, Thank you to all of our walkers, our wonderful supporters and donors.

I hope that we will only grow and grow each year with red shoes taking over the Marietta Square...then the state of Georgia...the entire country....maybe even the world!!!

This past Sunday was my 2 year dx anniversary, a day which I wish I could forget, but unfortunately I am very good with dates. It is a hard day for me, and filled with many emotions. Chris and I had a quiet day together, going out to lunch and going shopping and other small things to distract me from being bummed out.

There are so many wonderful days throughout the year that are worth celebrating: people's birthdays and anniversarys, holidays spent with family and friends. The anniversary of a diagnosis of an incurable disease is slightly less worth celebrating. It is more of a "this is the day your life as you knew it changed forever" and while I know that MS is just another card in my deck now, it has a way of finding its way to the top of that deck more often than I would like! The MonSter is such an attention-stealing drama queen!!!

So I have lived with the MonSter in my house and in my life for two years, and while I have had more relapses than I or my doctors would like to see, I also have not had any significant disability progression, i.e. I am at the same level of basic functioning that I was 2 years ago. And I am grateful for that, I really truly am.

It helped alot that the walk was so close to this icky day, and the memories of what an awesome day it was were still fresh in my mind. I mean, not only did we take over Marietta in our red, raise a TON of $$$ and have the largest team on the square, but I got to sing the national anthem!!!! That has been on my "lifelong to-do list" since I was around 10 or 11 years old! What a fabulous way to check that one off the list.

Thank you again everyone for making WalkMS 2009 such a wonderful, memorable day!
Lots and lots of love,