When you are a small child, you believe your parents know everything there is to know and that they can fix anything.

I grew up with a Dad who has an incredible gift for diagnosing patients and helping to heal them. He literally can examine a child who is too young to tell him what hurts and somehow he puts the puzzle pieces together and finds a way to make them better. I have always been in awe of this gift of his, which is shared by many doctors in the world.

My diagnosis doesn't seem to be the problem. Every doctor I have consulted that has seen my MRI, my symptoms, my labwork...they are all in 100% agreement that I have MS. What no one can seem to tell me is why I am not getting better. According to all these doctors, in the vast majority of people with MS, double vision is not permanent.

In the medical field there are always exceptions to certain rules....and it seems I am what they would call "exceptional".

As we leave childhood behind, we begin to see our parents as Real people. They aren't perfect, they make mistakes. They don't have all the answers and they can't fix everything.
The same holds true for Doctors. They don't have all the answers. The can give you lots of information and their very educated opinions, they can run a lot of tests and try different medications, but in the end they may or may not be able to fix you. They can't cure cancer or rheumatoid arthritis or diabetes or lupus and they sure as heck can't stop bad things from happening to good people, no matter how hard they try.

What matters is that they do try. They go to school for more years than anyone wants to count, give up social lives, holidays and family events to care for perfect strangers. And they do this because of their desire to heal people. They try. They don't always tell us what we want to hear and they don't have all the answers and they can't always fix what's wrong with us. But they do try.

After a series of disappointing, frustrating doctor visits I have to stop and breathe and remind myself that they really are trying. They wish they could give me some good news. They wish they could fix me. It's not their fault that they can't. It's not anyone's fault. Bad things just happen sometimes and there isn't anyone to blame, as much as I would often like there to be.

The appointment today was hard. Yet another poor doctor who can't understand why my vision hasn't returned, who is concerned that I may have a "fixed lesion": meaning this brain lesion isn't going anywhere. Meaning it isn't going to heal or get smaller and it is going to keep right on causing double vision for a really, really long time, possibly forever.
And I have to remind myself that this poor doctor didn't want to have to tell me that and it isn't his fault. And I have to remind myself that it is just another opinion.

And then I realize the scariest thing of all:
None of these doctors really know. None of them can tell me with 100% certainty if my vision will or won't get better. The brain is just too complex an organ and MS is just too mysterious a disease and they Just. Don't. Know.

And I can no longer be the child whose parents know everything. I can no longer be the kid who believes Doctors have all the answers and can fix whatever is wrong with you. And it is scary and I feel very alone sometimes.

But whether I can see or not, whether I can feel my feet and legs or not, whether I can walk without stumbling or not walk at all,
whether I can sing or dance or drive a car or not...
I am still Me. I am still Caroline.
And she's pretty darn amazing if I do say so myself.
And no one, not even the MonSter, can take that away from me.

Wacky MS

My dear friend Kimmy just got me the greatest coffee mug ever...
Check out this website for a good laugh, but be warned you MUST have a sick sense of humor to fully appreciate it. :-)
http://www.cafepress.com/diseaseduds/3027143

Enjoy!

The Annoying Boa

Every time I think I have this thing under control it throws me another damn curveball. Grrrr!

I should be grateful really. I mean, so far all my MS-related symptoms aren't really life-shattering. Well, the lack of single vision stinks pretty bad, but I do really believe in my heart that my vision will come back to normal eventually. So vision aside, I should be grateful. So far my symptoms are mainly just annoying:

My arms and/or legs decide to go numb for a few hours or even a couple days = Annoying. I walk slowly and carefully, I park in the handicapped spot, but it's manageable.

The pins and needles, the "ants crawling under my skin", all the sensory disturbances = Annoying. I am constantly convinced there is a bug crawling somewhere on me, and even after 4+ months I still have to check to be sure there isn't one!! haha

My hair falling out as a side effect of the stress to my body and medication changes = Annoying. It doesn't look like I will be sporting the "Jean Luc Picard" anytime soon, so that is very good.

So this week we add to the list the Annoying Boa, as in Boa Constrictor. This new exciting symptom popped up last week and has reared its ugly head about 4-5 times now since then. Basically, my brain starts sending messages to my abdominal muscles and the muscles in/around my ribcage to contract for no reason whatsoever except to annoy me. Its like when you run and get a cramp in your side - it kinda feels like that.

The first time it happened, I was convinced I was having acute appendicitis. Then Chris reminded me that my appendix was on the Other Side of my body...oops! Sometimes it hurts just on one side, sometimes it literally feels as if a Boa Constrictor has wrapped itself around my torso/ribcage and is squeezing for dear life. It's Very Annoying. Apparently some MSer's call it the "MS Hug". Well I am NOT calling it that! There is nothing nice nor friendly about it, so I went with The Boa instead.

When the Boa visits, I try to become "Yoga Caroline" and sit on the floor and stretch my torso all around and focus on deep breathing and sometimes that helps, or at least relaxes me to where it doesn't hurt as much. I also find that if all else fails a nice glass of wine makes you care a little bit less that the Boa is visiting.
Actually, a nice glass of wine helps with most things in life.
Or if it doesn't...there's always the entire bottle. ;-)

Hurry Up and Wait!

I know, I know...I am way behind in my blogging. It was a busy week to say the least.


Let's go back to Tuesday the 14th: My darling friend Alice takes me to my appt at Shepherd (Chris was being deposed...like I said, it was a crazy week). It wasn't a complete waste of an appt, as they took my bloodwork for the umpteenth time this month; however, the news about my eyes wasn't what we were hoping for. Basically, there is no Plan C.
"What do you mean there is no Plan C?"
"Well there isn't anything left to try to fix your vision. We will just have to wait and see what your next MRI shows and wait and see if your vision will come back on its own."


Wait? I have to "wait"? That's it?? That's Plan C?!? WAIT?!?!?
Don't they realize I have been "waiting" for over 4 months, through numerous IV infusions and medications and tests and bloodwork and doctor's appts?
I am getting really tired of WAITING.


Fast forward to Friday the 17th: we visit the Neuro-Opthamologist (who happens to be a Pace alum) and she says that she has never seen a case of MS-related double vision not clear up eventually. At least there is some good news! She wants me to consider another round of Solu-Medrol via IV. More needles residing in my arms...great...I now know what a poor pincushion feels like. Seriously though, another 3 day infusion in exchange for single vision...Okay. Sign me up. So now it's just a matter of getting yet another procedure scheduled and approved by insurance. And since Solu-Medrol is about $14,925 cheaper than IVIG, I am hoping it will be a quick approval process. :-)

Other than that I am trying my hardest to stay out of this unbearable heat. When i get too hot, my brain likes to punish me by making my legs go numb. What a wacky sense of humor that brain of mine has...

Stay hydrated and stay cool out there and let's hope fall weather arrives soon!
XOXO

Lucky

As I read about MS and its many manifestations I have learned that alot of potential symptoms are scary and uncomfortable to talk about. Many people experience problems with something as simple and taken for granted as going the bathroom normally, i.e. overactive or not-so-active bladders. I have been very lucky that I have not encountered such problems so far.

When I began this blog I knew the possibility existed that I would experience many less than desirable symptoms and side effects associated with this disease and the medications used to treat it. I have written about a lot of them so far, in an effort to raise awareness on a mystery illness. I decided early on that I would do my best to always be honest and not censor myself, so that I could give MS a real face for people as we all learn about it together.

So with that being said...my hair is falling out.
Now before people start freaking out on me, my doctor and I are fairly certain it is not ALL going to fall out. It is most likely due to a condition called Telogen Effluvium, which essentially is a disruption to the hair's normal growth cycle. You know how every day you normally lose a few hairs? Well with TE, the hair sheds excessively and sort of comes out in handfuls, usually not causing any bald patches, but just an overall thinning. ALOT of women experience TE after having babies, so it is a very common thing. Other reasons for it include Stress and changes in health and/or medication. I have had a bit of all of those I suppose :-)

At the end of the day, I would far prefer my hair falling out to my bladder not working properly, but it would be better not to have to choose the lesser of two evils. Chris and I were reminiscing about February of this year, when our biggest problem was trying to merge our money together and set up a household budget!

Ah, the good ole days.... My dear friend Kimmy said to me the other day, "Have you ever noticed how some people are just unlucky? I hate to say it, but I think you may be one of those people." I guess there is some truth in that I have been unlucky in ways. Being diagnosed with MS isn't going to win me the "Luckiest Woman of the Year" award. But, the truth is that I have been lucky in many, many ways. So maybe that is how Nature balances it all out: someone who is unlucky in love has perfect health, for example, or vice versa.

I feel lucky to have such dear family and friends and a husband who would move mountains for me. I am lucky to have a roof over my head and a collection of such fabulous shoes! I am lucky to be gifted with musical talent and have the ability to share it with others...the list goes on.

I am lucky enough to have faith that things ARE going to get better...
This too shall pass.

Headed to Shepherd in the morning to see what exciting Plan C's To Improve Caroline's Vision exist...wish me Luck!

Never give up, Never surrender

Well, it is officially been 9 days since my IVIG ended, and in theory, I should have been able to notice a difference in my vision. Sometimes I will sit and stare at an object across the room and wonder, "Ok, if I stare at it hard enough, and if I want it badly enough, maybe there will only be ONE object instead of two." So I stare and stare and hope and hope and think lovely, happy thoughts.

So far, the only thing it has done has given me a headache.


I still cannot see straight and I am exhausted and frustrated. I called my doctor yesterday. The nurse was supposed to have someone call me back. That never happened, so I just called 5 minutes ago and told them I needed the soonest appt they had, which was Tuesdsay, 9:30am.
Then I made an appointment with an Neuro-Opthamologist for Friday morning. I figured someone that specializes in brains AND eyes may have some other ideas to try.

I am scared that my vision may never come back, in which case I know I will eventually adjust, but it is still scary. Chris and I wanted to watch a Daily Show before bed last night and I tried everything: both eyes open was a joke- there were two Jon Stewarts, patched the right eye and Lefty laughed at me with its blurriness, I patched the left eye and Righty said, "Um, no thanks. I'm pretty tired, too." So I laid down on the couch and just listened to it instead.

I think this is part where some people throw up their hands and go, "Alright. You win. I'm done with the needles and the doctors and insurance companies. This is my life now. I have MS and I can't see. I'm going to be a hermit and live my life by the daytime TV schedule."

Obviously, MS doesn't know who it is dealing with here.
If it did, it would know that I ain't givin up without a serious fight.

So be warned MonSter...I'm comin for you and I don't take prisoners.
I am ready for some ass-kickin and your name's at the top of my list.
I am getting my vision back. Dammit.

As Winston Churchill once said,"Never never never give up."

The sun will come out...

The last day of my IVIG infusion was Wednesday and I am completely thrilled to no longer have tubes stuck in my arms. They were really cramping my style (not to mention my wardrobe choices). So while I tolerated the infusion pretty darn well, what I failed to prepare myself for was how rotten I was going to feel in the days afterwards...

Apparently the "worst" day of an IVIG is the day after the infusion ends.
Welcome to Thursday: I was jolted out of bed at 4:00am on Thursday morning with pain in both legs that was so ferocious it actually brought a few tears to my eyes. Realizing I wasn't going back to sleep any time soon I decided to move to the living room. I swung my legs over the side of the bed and stood up, only to discover I was standing on what I was pretty certain was Jello.

Now of course there was no actual Jello in my bedroom; however, my legs were so wobbly, weak and unstable that as far as I could tell, either A) I was standing on Jello, or B) our apartment had somehow become part of a monohull (that's a sailboat) in the middle of a hurricane at sea. As interesting as A) or B) would have been, sadly the reality was: C) my brain and its merry band of lesions was playing yet another cruel joke on me.

I resembled an extremely intoxicated person as I stumbled to the living room. I held onto walls and various pieces of furniture making my way to the couch and praying with every unsteady step that I would not go Ker-Splat onto the floor and knock out any more of my precious teeth! I was so utterly thrilled and relieved to make it to the couch that I stayed there until Chris woke up around 7:00am. We waited for Shepherd to open and called to ask what they could do to help me with the pain, which was not showing any signs of improving. They suggested a new drug called Lyrica.

The trouble with MS pain, as I am learning and being told by my doctors/nurses, is that it is very hard to treat. For example, if you have a headache or a muscle ache you take a Tylenol or Advil or Aleve and it is designed to lessen the pain in your head or your back or wherever. But the pain in my legs isn't being caused by my legs. In fact there isn't anything wrong with my legs. Though they may feel as if they are on fire, it is in fact my brain that is messed up (yeah, yeah, I know...my brain was messed up before the MS. hahaha) But seriously, my brain IS messed up and keeps sending these screwy signals to my legs telling them that they hurt. So, Lyrica's job is to block the unwanted nerve signals from my brain. So far it is helping some, I hope that it will continue to block more signals and therefore lessen the pain.

Today has overall been much better. The ground feels less Jello-like, the pain is still there, but improved and the vision...well, I don't see much improvement yet, but according to the experts, IVIG results usually show themselves 5-7 days after the infusion is completed. So I take one day at a time and wait patiently. And for every really Bad Day, I know there is a Good Day coming right around the corner. Bet your bottom dollar that tomorrow...there'll be sun :-)