Sunday, September 23, 2007

Oh How I Love Good News!

Oh boy, what a week! Hang on to your hats, this will be a long one!

For about 10 days now I have had shortness of breath and tightness in my chest. Now when you call your doctor and use the term "shortness of breath" they immediately think you are having a heart attack or your lungs are collapsing or something. The nurse at Shepherd advised me to have my lungs and heart checked by my PCP right away. So I went and saw my Dad, who said my heart and lungs sounded fine. We did a peak flow test which measured a little better after nebulizing, but nothing to really get concerned about. Meanwhile the breathing isn't getting any better and feeling like you can't catch your breath is pretty darn miserable.

So we are off to Shepherd on Friday morning where we ask Dr.T about the breathing thing and he nods That Nod that I have come to recognize all too well. It says: "Yes, I know exactly what you are talking about. No, you are not imagining it. Yes, this is just another wacky MS symptom and No, I do not have a definitive cure for it." Dr. T is all too familiar with my complaint...he calls it the "MS Hug". I quickly respond, "That is a Horrible name for something so unpleasant and I refuse to call it that! I have named it the Boa Constrictor instead, thank you very much." He laughs at my joke, then goes on to explain that my brain signals are being misinterpreted and sent to my intercostal muscles (the tiny muscles in between each of your ribs) and telling them to SPASM...For no reason other than to irritate me. Oh, this disease is trying my patience!!!

So we have 2 options: a muscle relaxer like Baclofen or Zanaflex OR a drug called 4AP. Each come with pros and cons. Baclofen, for example will relax ALL my muscles and also make me drowsy and loopy. The 4AP...well now, this is a doozy. The funny name stands for 4-aminopyridine, and it is a drug that helps to improve the function of nerve signals across damaged or demylinated nerve fibers. It is currently used in over 10,000 MS patients as well as spinal cord injury patients and has had great success. The catch: it is not FDA-approved yet, therefore not covered by insurance. Costs look to be $60-70 per month, so it isnt astronomical. Oh! and the best part... it is used "agriculturally" as bird poison!!! NO I am not even kidding! They use it in NYC to control the pigeon population because it is considered a "humane" form of bird poison!
I joked with my stepdad and my other friend who are both on Coumadin (which was originally developed as rat poison) that together we could control the entire rodent population.

So I don't know...I am sending pleas to my brain to just stop this nonsense and let me breath easily again so I don't have to be forced to try bird poison. Maybe it will listen...if not, maybe I will try some of these things and see what happens. I went and saw my friend Rachel yesterday who is a massage therapist and one by one, she tried to relax each intercostal muscle by massaging the crap out of them. 24 hours later it seems to have helped. I try to be Superwoman with all this, but you reach a point where you are just miserable, your quality of life suffers and you are willing to try anything. I am not there yet, but I have my moments :-)

Now onto the really GOOD NEWS!!! Dr. T said he was "very pleased" with my MRI results. There were no signs of any active lesions (YAY!) and the 3 lesions in my left lateral whatever were so small you could barely see them...which means they Shrank! And are possibly healing!!! YIPPEE! Not all MS lesions heal and no one knows why some do and some don't but I am SO lucky that mine are shrinking! He said Betaseron (my injections) were definitely working, since there were no new/active lesions and he said I don't need to have another MRI for a year! He is that happy with how my brain looks! I feel like I just won the lottery or an Oscar or something...

I would like to take this opportunity to thank the Academy, the wonderful people at Betaseron (shout out to Judy!), everyone at Shepherd Spinal Center (Dr. T, Tracy and Emily you are all Rock Stars). I could not have done this without my dear family and friends and all of You out there cheering me and my brain on to victory! Thank you!!!

Ok back to reality. Dr. T did say there was one thing to note on my MRI. He did find some "mild demyelination" in my brain stem; however the damage did not look new, because new/active lesions show up differently when they inject me with this stuff during the MRI. Meaning: this brain stem damage was probably there before, but my April MRI was not as detailed. What is even MORE interesting is that Dr. T explains that brain stem lesions are Notorious for causing double vision, among other things.

Ah Ha! We have a culprit!!! Dr. T does NOT think I have this Myasthenia thing. He says my complaints with my vision make perfect sense if there is damage to the brain stem, i.e. worse when I am tired or overheated, because signals don't travel as well over nerve fibers when you are fatigued or hot! It all makes sense!!! SO, what now? Well, we wait to see if the brain stem will REmyelinate or not. Again, some do, some don't. I keep doing my injections and send happy healing thoughts to my brain. But, BOY, was I relieved that he doesn't think I have a Second disease to contend with! Who has time for such things?!?!

All in all, a very good appt with wonderful news. I don't expect the road to be bump-free or anything, but it is looking smoother all the time.

Monday, September 17, 2007

The Adventures of MS Girl

We last left our heroine at yet another exciting Dr appt where she was told there was a possibility that the lesion affecting her vision might be "fixed" as in "Sorry. You're stuck with this, my dear." Well MS Girl just didn't like that answer very much, so she went off in search of more answers.

Her journey led her to a Neuro-Opthamologist who did an extensive eye exam and concluded that she did not show signs of 6th cranial nerve palsy (what everyone thought the MS was doing to her brain causing double vision). Sooooo, then what is it? Dr. W seems to think it is muscular in origin.

Wait!?!? So what does this mean? Was the MS diagnosis wrong?
"Um, No." Dr. W and Dr. Thrower (and 4 other doctors) all agree it IS MS. "You do have MS. You also seem to have something else that is causing the problem with your vision."
Coincidence that the MS was discovered by the sudden onset of binocular diplopia? Perhaps. Or it is likely it WAS the MS messing up the eyes and now something else has taken over and continued the exciting battle going on in the left eye!!!

Next the journey took her to Dr. B, a Pediatric Opthomologist who knows a heck of a lot about muscular eye problems. A loooong visit later, Dr. B seems to think it is either A) the MS and all the new medicines have caused a major stress to my body and my left eye muscle has retaliated by deciding not to work, or B) it is another neurological disease called Myasthenia Gravis, which commonly causes muscle weakness in the eyes.

Ok, wait one cotton pickin minute. You are telling me I might have not One, but TWO neurological diseases???? You have got to be kidding me. I know I am a Drama Queen and all, but really...isn't this going a bit too far?

The thing is though, it would explain things. If it is this Myasthenia Gravis (MG) it explains why my vision hasn't improved with steroids or IVIG. And it would open the doors to new medicines to try that might improve my vision if it truly is muscular. But, holy crapola, Batman! Do I really have time for another major illness here? I don't know if I can be a cheerleader/advocate/spokesperson for TWO diseases! Plus this MG, while it doesn't appear life-threatening or totally still doesn't look especially fun. There are things about it that could be a lot less than fun, in fact.

So for her next mission (on Friday), MS Girl will fly (well, actually she will be driven by someone) to Shepherd Spinal Center for her MRI results and he appt with Dr. Thrower. And she will ask to be tested for this Myasthenia thing to rule it in or out of the equation.
And she will stay positive and hope for the best, come what may.

Stay tuned for more exciting adventures of MS Girl...I think I may need a theme song...

Saturday, September 15, 2007

Faith, hope and love

This week was very long and there is a lot to tell; but I find myself so tired, physically and emotionally that I will have to wait until later to tell it all. So this will be short and sweet:

I bought myself a present last week, well actually I bought myself three presents. I was feeling kind of down and made the short drive down Atlanta Rd one afternoon to have lunch at my favorite spot (Muss & Turners...duh!). Afterward I walked past the shops there and wandered in one...SeaGrass? SawGrass? I can't remember...but I was immediately drawn to a counter full of jewelry (no surprise). On it there were all these simple silver rings with words engraved into them. 5 or 6 different words total I think. "Imagination", and something else...but the 3 I was drawn to were "Faith", "Hope" and "Love".

What 3 better words are there??
So I bought all 3 rings and have been wearing them ever since.
It's just silly jewelry but I find comfort in the words right there on my hand.

I wish you all those 3 things in life:
Faith in not only whatever higher power you may believe in, but also Faith in yourself and in your own strength....
Hope so that in even in the darkest times you can truly believe with all your heart that things Will get better...
and, the Love of family and friends to nourish your soul, give you comfort, give you joy and enrich your life forever.

I consider myself very blessed, not only to have new jewelry (which is always a plus!) but to have Faith, Hope and Love in my life.

I Corinthians 13: Love is patient; love is kind. Love is not envious or boastful or arrogant or rude. It does not insist on its own way: it is not irritable or resentful; it does not rejoice in wrong doing, but rejoices in truth. Love bears all things, believes all things, hopes all things, endures all things. And now faith, hope, and love abide, and the greatest of these is love.

Sunday, September 9, 2007


It started with a show on TLC called, "Crazy, Sexy Cancer". If you didn't have the pleasure of seeing it, check your listing for a reshowing. Wait, here:

This young woman named Kris Carr was diagnosed with a rare and incurable cancer. She has approached it with a courage and a tenacious, fiesty spirit that I truly envy. If you take a minute to read her website, or her blog (which is also great) you will see what I mean and you will agree that, even though her cancer cannot technically be called "in remission", she is the epitome of the word Survivor.

It is a phrase we know too well. How many of us have family and friends who are "cancer survivors"? I always feel so proud to know cancer (sorry, Kris) CanSer survivors. I am amazed by their strength. I am amazed that anyone can look their own mortality square in the face and nothing forces you to do that like CanSer does.

Tonight my husband was watching a show about Lance Armstrong. Alot of it included his battle with CanSer and as they interviewed his teammates, family and friends I must have heard the word "survivor" no less than 20 times. And I found myself facing the strangest emotional response yet:
I was jealous.
Certainly not of people who have had CanSer. It is a horrifically devastating disease. But I was jealous of this word, "survivor".

Both Kris and Lance talk about how their outlooks on life changed after their illnesses. How could your outlook NOT change when you have faced the very real possibility of death? A lot of people say their lives changed for the better...they learned to appreciate things more, to not sweat the small stuff and to just cherish being alive. Isn't that something we all strive for...or should anyway?

I am NOT the same person I was before MS entered my life. It has drastically changed my outlook on many things. I can no longer plan my future without factoring in "what if MS does this...or that...?" Sure they are still just "what if's" but in my world, they are very real possibilities that have to be considered. It has affected my daily life and activities, my work, my relationships...I still cannot see properly, I live 60-70% of my day fighting either extreme fatigue, numbness, sensory problems, pain and/or balance issues. (The "I am not Drunk! I just have MS!" t-shirt is coming soon...)

But does all that really make me a "survivor"?
We all overcome hardships and adversity. We all make mistakes and learn from them. We all fight to become better men and women and leave the world a better place than we found it.

So here's to all the Survivors out there:
To a woman who raised 2 seriously ill children without ever asking "why me?" and now fights her own serious illness without ever asking "why me?"...To a man who fights to stay sober and remembers the true joys of life without needing alcohol...To a woman who is not only a cancer survivor but fights another devastating chronic illness and continues to inspire others...To a man who was told he would never be able to hear or speak normally, who overcame all odds and grew into someone I am so proud to know...

To all of you and so many more...
I raise my glass to you.
We are all Survivors in our own way.

Tuesday, September 4, 2007

Look to the Rainbow

"And when it rains on your parade, look up rather than down.
Without the rain, there would be no rainbow."

- G.K. Chesterton

I have always been a huge fan of rainbows.

It began when I was 2 years old with a girl named Dorothy, a pair of red shoes and a song about rainbows. My obsession with both red shoes and rainbows is still going strong 26 years later.

There is always going to be rain in our lives. Sometimes it pours, sometimes there are horrific thunderstorms that don't seem as if they will ever let up. My Mom recently said to me, "Caroline, you have always been able to find the rainbows in the midst of rain," but I am realizing that not everyone can do that so easily.

What is it that allows people to stay so positive in the face of adversity? Is it our faith in a higher power? Is it the love and support of our family and friends that helps get us through the hard times? Or is it just something we are born with...that inner strength, the voice telling us to keep going, keep fighting and that things will be okay? Does everyone have that voice or not?

When my aunt Marilyn was fighting breat cancer I sent her a card that read, "Do you ever feel like your guardian angel went out for a smoke?" That the world has turned its back on you and Life has let you down? I believe it is in those moments when our true character emerges. My Mom and I call it that certain "Umph" that people have...that ability to dig down deep inside and pull out tenacity and strength that they may not have even known they had.

When I see people giving in to the anger and fear and pain, I wish I could just inject them with Umph. I wish I could hold them and tell them that even in the midst of terrible storms there are still wonderful moments to be shared...that even in the midst of chronic pain and an uncertain future and bodies that are failing us, our spirit and our hearts can become stronger than ever. I wish I could make those people see the Unbelievable power of a positive attitude and a sense of humor.

I wish I could show them the rainbows.