Monday, July 30, 2007

3 down, 2 to go

Well I started the IVIG infusion on Saturday morning, Round Two was Sunday morning and Round Three began 8:30 this morning and so far so good. My nurse's name is Sam, a kind, soft-spoken man originally from Nigeria. He is an IVIG Expert. The only thing he does is drive all over GA giving these infusions, so he knows all the common side effects, what to look for and how to prevent them. He checks my blood pressure about 50 times during the 3 hour infusion. Apparently a drop in blood pressure would be the first sign of something going wrong. Also he checks my temperature a lot. So far, both have been completely normal. yippee!

So, my veins...they like to plan hide-and-seek with nurses. They are extremely hard to find, but I have to give Sam only took him 2 stabs, which for my stubborn veins is an IV record! He is good at what he does. So far the worst part has been the headache on Day Two, but Sam came to rescue and told me that if I took a little Benedryl and Tylenol it would help (I had taken Tylenol with no improvement). He was right on the money! When I woke up Monday morning headache was completely gone. I don't know how the chemistry of all this works, but if I don't have to be in pain, I will glady take a little antihistamine!

I usually leave IV's in (did I mention my veins like to hide from nurses?) to avoid the painful process of "Vein Digging" but today we took the tubes out because my left arm was starting to get a little swollen and painful. Nothing to be worried about- it was just tired of bearing the burden. So tomorrow Righty takes over for Days Four & Five. Seems only fair, right?

3 days down, 2 to go...

Friday, July 27, 2007

Let the fun begin...

The day has finally come. After approximately 543 phone calls to various medical and insurance people...wait for it....
My IVIG infusion has been approved!!!!

But wait it gets better- it has been approved and will be paid for in its entirety, which is a very good thing considering this lovely infusion comes out to the tune of around $15,000. Yes, that's right folks: the cost of a new car, or about 75 pairs of Stuart Weitzmans, or furnishing a house or something...but instead 15 grand for an immune-system-modulating-blood-product that may or may not fix my double vision...Crazy, huh?

So starting tomorrow at 10am I spend the next 5 days hooked up to tubes. Its yucky, but I am envisioning this medicine as whooshing into my body and then up to brain. Then I am imagining those little tiny construction workers from "Fraggle Rock" using this magical medicine to fix my brain lesions. I think imagery helps. If nothing else, it makes being hooked up to an IV slightly more entertaining!

So wish me luck and if you like, you can envision Fraggles, too.
Who knows...maybe by this time next week Double Vision Girl will be a thing of the past and I can get back to being Boring Old Caroline.
Not that I could ever be boring, of course :-)

Sunday, July 22, 2007

Turning 28

Birthdays have never much bothered me in the way they bother some people. I don't mind turning a year older as I have always believed that age doesn't really matter. It's only a number. (Of course I reserve the right to change my opinion on such matters when I turn 30! haha)

But seriously, getting a year older isn't what is bothering me. I am disturbed by the fact that my birthday has come and gone and I still can't see straight. Thinking back to mid-April when the vision problems began I remember thinking, "Well, certainly by my birthday this will all be way behind me..." And here I am still right in the middle of Double-Vision Land.

It has been over 3 weeks since my appointment at Shepherd and the IVIG Dr. Thrower wants to put me on has not been scheduled or approved yet. And while I want to feel hopeful that the IVIG will help my vision, just like the Solu-Medrol was, this is only a guess. There is no guarantee that it will work either.
So then what happens? Plan C? We try a different drug? I would think we are starting to run out of medicines to try...I have read that when MS patients aren't responding to certain drugs they sometimes try things like Cytoxan, which is basically chemotherapy. That sure doesn't sound fun. While I am certain I could look equally as lovely with scarves wrapped around my head and/or sporting the Sinead look, who wants to go through feeling that bad? Yuck yuck yuck! I sure hope there is something else they can try on me. I am a good guinea pig! Bring on the Wonder Drugs!!!

It is all extremely frustrating and I want this IVIG Yesterday so I can know whether or not it will fix my stubborn brain and move on with my life. There's music to play, places to go, people to see...I got a lot of livin to do!

And while all of you are out there this weekend, reading the final installment of Harry Potter, my dear friend Angela (knowing my eyes were less than cooperative these days) bought it for me on audioCD. How often as an adult do you get the excuse to have someone read aloud to you? And I hear the gentlemen who reads it has different voices for each character!!! I am very excited!

Here's to hoping the next time I write I am receiving fabulous IVIG into my body. Who ever thought my birthday wish would be to have a needle stuck in my arm??? Life is pretty funny sometimes... :-)

Sunday, July 15, 2007

"You can turn painful situations around through laughter.
If you can find humor in anything,
you can survive it."
- Bill Cosby

That thing we call The Immune System

The body is a pretty amazing thing when you think about it.
We cut our finger, we break a bone, we get a cold...and our body fights the infection/injury/whatever and heals us. Its pretty incredible.
So what happens when your body can't tell the difference between the "good guys" and the "bad guys"? What do you do when instead of fighting the bacteria that crept in uninvited, your body is fighting your perfectly healthy brain?
Things become complicated to say the least.

This is the whole premise of an Autoimmune disease. Your body knows there is a war going on, but it gets confused about which side it is on.
So here is what happened last week:

Chris and I babysat for our 10-month old twin niece&nephew last Sat night. My sister Erin and brother-in-law Mark just celebrated their 10 year anniversary and for a present, Mark's sister Kerry took Ella & Emory (ages 7 & 4) and we took Van & Ava and gave the happy couple a night all to themselves at the Ritz. We actually had a blast - they are Really good babies and so roly-poly and fun. But what's the saying "no good deed goes unpunished?" Well poor Van & Ava had recently fought a stomach bug and of course guess who got it Sunday night? That would be me. While Chris remained perfectly unscathed!

Fast forward to Wednesday: My mouth feels really funny, scaly, bumpy. So I got out a flashlight and sure enough my entire mouth is covered with a white, bumpy rash commonly known as thrush. Oral thrush is something that babies and people with compromised immune systems get. So wait? I have a Compromised Immune System?!?!?

I call Shepherd and sure enough my white blood cell count is too low = indicative that my immune system is weakened. Most likely this is due to the Wonder-Drug that is slowing the progression of my disease. Its a double edged sword isn't it? The medicine that will hopefully slow down the damage to your brain is also going to weaken your ability to fight off disease.

I have never been much of a Germophobe, but I am having to force myself to become one. Washing my hands alot, not touching my hands to my mouth or eyes when out in public, upping my vitamins, etc.

Shepherd still hasn't gotten an answer from Aetna about the IVIG. Guess they aren't too keen to cough up $25,000. haha! Shepherd assures me no one needing IVIG has been denied yet, but still...I am getting impatient.
My birthday is on Thursday - Perhaps I will call Aetna myself and remind them of that. I can think of no better birthday present that a medicine that will finally get me seeing straight! "Happy Birthday to me....Happy Birthday to me..."
If only they could figure out a way to give it to me that didn't involve a 20-hour long IV.
Ah, well. We can't win 'em all. :-)

Thursday, July 5, 2007


Our appt at Shepherd on Friday went as well as could be expected.
Tracy and Dr. Thrower agreed that while 10 weeks of double vision was not unheard of in MS, it certainly was on the longer end of the spectrum. Therefore it is time to try a new drug called IVIG. It stands for Intravenous Immunoglobulin. In a nutshell it is a drug given over 5 days via IV and it is another immune system modulator of sorts. We are hoping it will give my immune system that final kick in the rear that it needs to get my vision back to normal.

The catch? (Why is there always a catch?) Well the main catch is that it is Super $$$. A friend of Mom and George just had a treatment of IVIG and the grand total was upwards of $50,000! So obviously we are waiting on pre-certification from Aetna before we start. Hopefully they will approve it without us having to jump through TOO many hoops first.
The only other downside is that each IV takes 4-5 hours x 5 days = about 20 total hours hooked up to tubes. Good thing my brother Van just brought over Season 2.5 of BSG!

I am trying to be positive about this new drug, without getting my hopes too high, for fear it may not work. I think it will. I hope it will. I am telling my body to be nice and accepting of our new IVIG friends when they come to visit and praying for the best results possible.

"Prepare for the worst, but hope for the best" is a quote popular to many MS websites. I guess the worst case being my vision never gets back to normal and I learn to adapt (apparently Atlanta has a really great Center for the Blind/Visually Impaired which is good to know). Best case is my vision returns 100%. How cool would that be? Part of me is afraid that after 10+ weeks I am not even going to recognize single vision when it returns!! Kidding, I am kidding. :-)

We will wait patiently while Aetna decides my fate...
More from me soon.


Ten weeks ago I never noticed whether or not someone walked with a cane or some other mobility assistance device. I never really noticed people in wheelchairs. I mean, I noticed them, sure...but never gave them much thought. I had never been personally affected by disability. My granddaddy has a handicapped parking tag because he has some trouble walking long distances, but does that really make him "disabled"?

Last Friday at Shepherd Center, we asked Tracy about getting our own handicapped tags. She immediately had them signed by Dr. Thrower and notarized by Emily (the Rock Star) and there it was: I was officially "disabled" and therefore worthy of a handicapped parking permit.

So I put my new license plate on my car and I just stood there and stared at it.
The Handicapped logo...
and across the bottom the words "DISABLED PERSON".
Standing in the parking lot looking at my new tag I wanted to scream,"I am not just a disabled person!!!" I am so much more than my MS, than my limitations. How dare I be forced to wear this label (in all caps no less!) across my vehicle everywhere I go??

Each day I am getting more used to seeing it and accepting it not as a label, but as something simply meant to make my life easier. It will allow me to expend my energy towards things and people I love, rather than walking on numb legs across a crowded parking lot and ending up tired and frustrated.

It is a good lesson to learn: being called "disabled" either by a license plate or by other means doesn't make you less of a person. It doesn't make a person less important to their family, their friends or to society. Disabled people just have to do things a little bit differently is all.

And we might occasionally get the better parking spots.
It's okay to be jealous. :-)