Resolutions

According to the medical minds of today, there are four types of multiple sclerosis. I am blessed to have the "Relapsing-Remitting" type. I have periods where my health and symptoms stay more or less the same, and I have periods where new symptoms may appear and/or old ones may worse and/or more damage to the CNS (central nervous system) may or may not be done. Sounds pretty uncertain and unpredictable, doesn't it?

So how do you know if you are having a "relapse" or as some prefer, an "exacerbation"? The general rule of thumb is if you have a new symptom (or worsening of old one) that lasts more than 48 hours, call your neurologist. That still doesn't mean anything...for certain (here we are, back to the color gray!!!) but it means it is worth taking a closer look.

So by Thursday (2 days after Xmas) when both feet have been numb, I am having new weakness in my hands and legs, the chest tightening is worse, my balance is waaay off and I am having dizzy spells (while stone cold sober!) for over 48 hours...I call the doctor. Turns out that if your body has recently fought off an infection or virus, MS gets really pissed off and acts like a rebellious teenager. The nurse was not surprised to learn I had a nasty chest cold less than 2 weeks ago and was now experiencing some trippy new/old symptoms. I am on watch until Monday. If things worsen or have not improved by then we will consider magic wonder-drugs to kick MS back into gear.

To further infuriate me, last night at 10pm and then AGAIN an hour ago the old right foot decides to mess with my head (or is it more accurately, my head messing with my foot? hmmm) I actually made Chris take my sock off so I could see for myself that my foot was not covered in fiery thumbtacks. I hoped that the visual would ease the pain. It did not. A double dose of anti-convulsants used for neuropathic pain did help.

So I sit here on Night Two of Burning Foot, still off-balance, dizzy spells abundant, still dropping things unless I really concentrate and use both hands and I wonder IS this a relapse? My MRI was so clean! I can't be getting worse already? It is too soon. My brain was so pretty on the scan. I wish my skull had a zipper and I could peek in and have a quick look...though, really what good would that do me? If I am getting worse then I am getting worse. I can't stop it. I can try my damndest to slow it down, but I can't stop it.

I can only do the best I can do today. And I really need to start recognizing my own limitations a little better. ONE major event per day is all I can do now. If tomorrow is my dear friend's birthday and I plan on being at her dinner party, then I can't go to Lenox on a shopping spree all day. Old Caroline could, perhaps, but my New Year's resolution needs to be letting her go and accepting that I am not Superwoman and this newly brain-lesioned body cannot do all the things I want it to do. And it really stinks and I hate it; but I also want to enjoy the things I DO get to do, which is still alot of amazing things with some pretty extraordinary people. So I have to take care of this immune-suppressed-jacked-up body of mine and be nicer to it and stop trying to make it something it is not. It reminds me all of a quote from Richard M. Cohen's book, who also has MS:

"We all need to appreciate ourselves for what we are and stop whining about what we are not. I grow weary of wishing so desperately for something else. Those concerns find no resolution. All I can do is what I can do. There are no cures out there, and there can be no illusions of health getting better. I do dream of living something better. There is peace of mind out there somewhere. That calm may take years to find, but its promise carries me beyond regions I otherwise would visit. To dream is to fly. Dreaming is rising above pain, believing that life will be better, no matter what the physician decrees."

And with that note I will make myself some herbal tea, perhaps draw a nice, not-too-hot bubble bath, listen to a favorite CD and be nice to my body in hopes it will return the favor tomorrow so that I may enjoy time with my friends.

However damaged and rebellious it may be, it is the only body I have. I need to appreciate it for the many things it allows me to do and try harder not to focus on its limitations.

Try To Remember...

Losing control over my body and it functioning "normally" does not really scare me. Sure, I wish I didn't have brain lesions and an unpredictable, degenerative disease. I get angry. I get sad. I grieve the loss of my health. But the thought of not being able to walk without some type of mobility assistance does not scare me. My vision never being normal and/or getting worse does not scare me. Any of the things that could potentially happen to my body - none of these scare me. They would make me very angry and very sad, but I can honestly say I am not afraid.


Stress, fatugue, aging...all these things can affect our bodies and our minds. Who hasn't lost their keys? Or completely forgot someone's name? How many times have we all said, "I think I am losing my mind!" as an expression of frustration. Haven't we all called something a "thingy" or a "whatchamacallit" because we simply could not remember the item's name?


It is well known that stress and fatigue exacerbate symptoms (even if you don't have MS) and I have gotten used to my legs being more tired or my eyes not working as well during times of high stress/fatigue. But in the past 10 days I have had more "cognitive issues" than ever before.
And it scares me.


At what point does an MSer realize and admit they are really having problems, cognitively speaking? When they lose their keys...for over 4 days? When they have no recollection of a particular conversation with someone? When they completely forget an important meeting? Or their social security number? When they all of a sudden can't remember the words to one of their favorite songs?

For someone who is a natural blonde and enjoys self-deprecating humor, it is easy to just laugh it off. Meanwhile, underneath my wicked & witty sense of humor these little moments terrify me. Not in and of themselves, but for what they might be foreshadowing...


If I end up using a cane or even a wheelchair...I am still me.
If I lose my vision, partially or completely...I am still me.
If one or both of my hands no longer work...I am still me.
If I need to take naps during the day...I am still me.
If I sometimes walk around looking like a drunk person because I am dizzy and my balance is off...I am still me.


But what happens if I forget people's names and birthdays, or can't think fast enough to read all the notes on a sheet of music, or get easily confused by simple instructions, or lose my stellar sense of humor because I can no longer think on my feet fast enough to dish out amazing one-liners and comebacks? Am I really still me if my mind doesn't work like it used to? Will I still be funny and interesting to be around?

I finally found my keys and eventually remembered my social security number (after a good night's sleep!) My husband kindly re-walked me through the conversation I had forgotten. Nevertheless, these things bother me, perhaps more than I want to admit even to myself.

But what is there to do? I take my extra vitamins prescribed by my neurologist, I do crossword puzzles, I try and stay active mentally and physically, I do my injections on the Wonder-Drug and I stay the course.
Above all I try and keep my sense of humor.
Because sometimes laughter truly is the best medicine.

Shades of gray

I love the colors black & white. I love their simplicity.
There isn't any question with black & white. No one says, "Hmmm, is that color blue or is it green? Maybe its aqua? Or teal? Blue-green? Green-blue?"
Black & white are easily recognizable.

Gray...now gray is an entirely different story.
While gray is a product of these two simple colors, gray is not simple. It brings up many questions and it isn't always easy to recognize.

People ask me all the time how I am doing, how I am feeling. It is wonderful to have so many people that care enough to ask and at the same time I feel guilty when I answer with some variation on, "Could be better, could be worse." I want to be able to tell them I am all better, that my vision is back 100% and I see things exactly like I used to, that my legs never give out on me, that my hands work just as they always have, that I never feel any pain and I don't ever get dizzy.
I want it to be black & white.
But MS is more gray than I ever imagined it would be and it frustrates the hell out of me.

Learning to live with gray is a slow process that I have not yet mastered. It takes patience. It takes time and a lot of perseverance. It takes acceptance.
My vision is gray and may be for a long time. It is not back to normal and I compensate in a hundred ways on a daily basis and I get by. I (usually) see better in the mornings but not always. My "magical" glasses help me see to drive most of the time, but often even they don't do the trick so I put them away and try again later.

Gray can be ambiguous and depressing, frustrating and dreary. It gives more questions than answers and at times it seems to spread so rapidly, taking over everything like a fog rolling in.

In those times the only cure is putting on some fabulous red shoes.
Red beats out gray any day of the week.
Red dances and stomps on gray's face.
Red is powerful.
Red is full of heart.
Red never gives up and seldom fades.

I love the colors black & white.
Though I like them best with a healthy splash of red.

Home Sweet Home

Hello from our new home!!!

We are moved in, have internet, cable, one bed with linens on it and some semblance of a functioning kitchen...Hooray!

Moving is hard work. I find myself more exhausted than I can remember being in a long time. Not only is moving just plain tiring, but Every darn medicine I am on causes extreme drowsiness and/or fatigue, not to mention the fatigue that MS causes all by its lonesome.
It is a real balancing act trying to figure out what works and what doesn't.

I have stopped taking my AM dose of Lyrica (the drug that helps with neuropathic pain) in hopes of getting some AM energy back. The price I pay however, is a few more sensory problems than usual, i.e. my legs vibrating, the feeling of bugs crawling on my calves and ankles and the occasional short-lived burning in my feet and hands. So far, the pros outweigh the cons, though I swear my husband thinks I am nuts when I freak out and yell (for the umpteenth time),

"Honey! A bug is crawling on me! Come kill it!"

He just stares at me and waits patiently for me to look down at my own leg and see there is, in fact, No Bug anywhere on or near me.

Poor Chris...married to such a bug-fearing lunatic. I am not scared of much, but bugs have always given me the heebie-jeebies!

It is just too infuriating to have this amazing new house and unpacked boxes staring me in the face and no energy with which to do ANYthing. So I settle for some buzzing/burning/creepy-crawly legs for a while. We all have to make sacrifices!


That's all I got for now, mostly because I can't really see what I am typing...I think my eyes are trying to tell me to Go To Bed! And if I have learned anything over the past 6 months it is the importance of listening to one's body. Because if you ignore what it is trying to tell you, it WILL eventually catch up with you and you will have to pay the piper.


More soon though....
XOXO

We're Moving!

This will be short, as Chris is literally about to take the computer away from me so he can pack it up! hah! We are officially homeowners and have just closed on our first home. We are really excited and the movers come tomorrow! Yippee!

Sadly, I do not yet know when our internet will be up and working at the new abode, so it could be a while until I blog again. Hopefully not too long.

In a quick update...my Dad who Rocks is having me send all my medical records to a doctor up at the Mayo Clinic to get his take on my bizarre medical history. It will be interesting to see what he thinks about A) The ever-present, ever-lingering double vision, and B) The Chest CT/shortness of breath stuff. It has to all be connected somehow...it is just a big Caroline-shaped puzzle I guess.

Off to pack! See you on the flip side....
XOXO

"I like living.
I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow; but through it all I still know quite certainly that just to be alive is a grand thing."
- Agatha Christie

The things that can happen in a week...

- I had a CT scan of my chest/lungs
- My best friend from childhood had a healthy baby girl (Lucy Claire, 6lbs6oz)
- Chris and I went under contract on our first home
- I tagged along with my Dad to visit my grandparents in Macon
- We had our first ever home inspection
- I got the inconclusive results of aforementioned CT scan


I am so excited about meeting Lucy I can hardly stand it. It stinks when your closest friends live far away and you can't be among the first to meet their babies. But I am planning on visiting them in December. Yippee!!!

Chris and I are also very excited about becoming homeowners. It is so cute, so perfect for us, and the inspection went fairly well. There are some issues, but hopefully we can come to an agreement on everything with the sellers.


As for the CT scan, according to my Pulmonologist, there is some "density" in the area of my thymus. At first I thought he said thyroid. But no, thyROID and thyMUS are 2 entirely different things apparently. The thymus is an organ located in the upper part of the chest cavity just behind the sternum and it stimulates the production of infection-fighting cells, notably T cells.


Wait...T cells! That's familiar. I have heard of those before!
I confirmed my suspicions with my good friend Wikipedia:
"According to most researchers, a special subset of lymphocytes, called T cells, plays a key role in the development of MS. These T cells recognize myelin (your brain's protective coating) as foreign and attack it as if it were an invading virus, which triggers the inflammatory process."

One of these days some researcher is going to discover that all these autoimmune things are somehow related and cure them all in one swoop! How cool will that be?

So back to the word "density" which is what is showing on my CT scan where my non-dense thymus should be. According to my ewver-growing team of doctors, it is one of the following:

1. The density is biological in origin, i.e. my thymus has always looked like that and we just never knew until we scanned it.

2. It is signs of thymoma, a fancy way of saying a tumor of the thymus, most often related to automimmune diseases such as Myasthenia Gravis, in which case most thymomas are benign.

3. Something involving the words lymph and oma. :-(

Inconclusive. This "blip" on my CT scan could be absolutely nothing...or it could be a teeny tiny benign tumor...or it could be a non-benign tumor, but since none of my doctors seemed to eager to crack open my chest cavity right away, I think that is a good sign. If they were really worried about it, they would have encouraged more aggressive actions.

So now I wait. There really isn't much else to do. My breathing hasn't gotten worse. In fact, I think it has gotten better (unless I get overheated, overfatigued or overstressed then there might as well be an elephant sitting on my chest!) So we watch and wait, keep track of my symptoms and do a repeat CT in 6 months.

Meanwhile, I have bigger fish to fry...I have a new niece to send presents to, I have flights to book to NJ, I have trick-or-treating with some UGA cheerleaders (and a football player!), I have a house to buy, I have furniture to pick out and rooms to decorate, I have stage makeup to design, I have a million things to be excited and happy about and worrying about whether or not there is a teeny tiny tumor in my thymus just isn't on the list today.


But, ya know, if anyone happens to have a couple of Xanax lying around or anything...I probably wouldn't turn them down...

XOXOXOXO

Time to Make the Doughnuts...

When I was little the question arose,
"I know that Daddy's job is to be a doctor and help people. But what is your job, Mommy?"

"My main job is to raise you and your brother and to teach you how to become adults so that one day you can have your own lives and your own jobs," my Mom replied.

"But Mommy, what is my job now?" I asked.

"Your job right now is to go to school. You need to learn all you can and pay attention and do what the teachers tell you. That is your job." I remember that conversation as if it were yesterday and feeling so secure in knowing what my job was and what was expected of me.

Fast forward to December 1999, when after 2.5 years of college I had to leave CCM (the topic of another conversation someday). My "job" as a student ended and from age 19 on, I supported myself. I worked in retail, I worked in medical offices, I taught kids to sing and dance, I managed properties, I trained people on how to do their jobs, I worked in an I.T. department...and the list goes on.

Fast forward to April 2007 when I had to leave my job, reeling from the effects of this new uninvited guest in my life. Thinking it would take a few weeks, maybe a month or two to feel better and get back to work, I waited. And waited. And more problems arose. And there has been pain, dizziness, mind-numbing fatigue, shortness of breath and still no real improvement in my initial vision loss. And in between doctor appointments and tests, in between symptoms that knock me right on my butt, in between visiting with friends when I feel up to it, I look at my life and I desperately want to ask,
"But Mommy, what is my job now?"

I suppose my job now is to feel better. My job is to learn to manage the effects and symptoms of this disease to the absolute best of my ability. My job is to make the annoying phone calls to doctors, nurses, labs, and insurance companies. My job is to ask "What else can we try?" and to say "This medicine isn't working" and "I need some answers" and so forth and so on. My job is to adjust to this new body that doesn't do what I tell it to do all the time and often does things that make no sense at all. My job is to keep my sense of humor and try to have some fun whenever possible.

It is a not a well-paying job and frankly, the benefits stink. It is a job that often makes me feel insignificant. I don't go in to an office every day. Heck, on the bad days I don't even shower or get out of my pajamas. And the hours of this job are just god-awful! I get ZERO vacation days! I don't even have cute business cards. But you know, this job is very important and if I do it well, I will be able to do other jobs again soon. More importantly, I know that this job will lead to a higher percentage of Good Days, happiness, sanity, maybe even inner peace or something.

So it's back to work for me, which today will involve: going to lay down on the floor for a while which is where I currently can breathe the best, returning a call to a doctor, paying a doctor's bill, cleaning up the apt a bit and then later on doing my injection of the Wonder-Drug. I might even shower somewhere in there (which I am sure my husband would appreciate).

It isn't my dream job, but sometimes you gotta work your way up the ladder. :-)

Dear God, It's Me, MS Girl

I suppose everyone has a breaking point when it comes to pain. I have several friends who have endured headaches so bad they actually vomit from the sheer pain. My brother broke his collarbone, which is thought to be one of the most painful bones you can break. And while I know nothing firsthand of childbirth I am assured by many that it is no walk in the park either. And yet I have a friend who endured gallstones as if it were nothing more than a stubbed toe, but she cannot stand to be nauseous or worse, vomit. Everyone has their own specific breaking point when it comes to physical pain or discomfort.

Last year during my first (hopefully last) root canal, it was thoroughly unpleasant, though never once did I feel defeated by it. Just glad when it was over! Really the same goes for the spinal tap, while quite painful, not unbearable. Even leaking spinal fluid and getting the raging "spinal headaches" = extremely unpleasant, but still do-able. Then MS played the "Let's make Caroline's legs feel on fire" game and there were moments I would cry and be really whiny and pathetic about it and my poor husband would keep switching out the icepacks, covering my legs with them in effort to trick my brain into thinking I was cold and not on fire. And it really was painful but luckily we found a medicine to keep it under control and no searing pain since.

Then 3+ weeks ago my little "boa constrictor" became some sort of mutant-giant-anaconda-freak-of-nature whose sole purpose in life is to try and squeeze the life out of me. And so for 3+ long weeks I have had a heck of a lot of trouble catching my breath. Quite literally. I have a new respect for asthmatics. How do people live like this? There are seconds, sometimes minutes where the pressure I feel on my chest is so intense I am 100% convinced I am taking my last breath. I was sitting at home the other day, struggling to get a nice normal breath and suddenly got very dizzy (I probably hyperventilated myself trying so damn hard to breath normally!!) I quickly layed flat on the floor, propping my feet on the couch, in hopes I wasnt about to pass out or something. Still feeling dizzy/queasy/hot/light-headed I am thinking:

"Oh Crap. Am I about to stop breathing or something? What is happening here? OH CRAP. I am home alone and if I cant breathe I can't dial 911 and I die alone in this apt with my bipolar cat who is certainly no Lassie! Ok, so if I can make it outside and pass out in the street of my apt complex there is more of a chance someone might see me and call for help. I should also probably grab that piece of paper in my wallet listing the 500 different meds I am on so some 22 year old ER doctor doesn't give me something that will actually kill me instead of fix me. Wait! Does 911 accept text messages?? If I can't breathe I could text them before I pass out, right?"

Yes, these are the thoughts that flew through my brain in the matter of about 5 seconds. And 5 seconds after that, I got in one good, deep breath and knew I wasn't going to die that day.
But seriously. I am 28 years old! Am I going to have to invest in one of those necklaces old women wear with the big red buttons??
"I've fallen! And I can't get up!"

This boa, this anaconda, whatever this is seems to have taken up permanent residence in the past week to 10 days and I gotta say, I may have reached my breaking point here.

Maybe it's because I trained as a singer for so many years. I mean it took me over a year just to learn HOW to breathe properly to support my singing voice! So not being able to ever feel as if I can catch my breath, the pain, discomfort, the dizziness, the fear of stopping breathing altogether...it has truly pushed me to the brink. Maybe its simply that breath is our lifeforce. It doesn't get any more basic than breathing, right? And feeling that basic need being threatened is really scary and horrible.

I had 2 consecutive hours today where breathing didn't feel like a chore and I didn't feel an elephant sitting somewhere on my chest. Sadly, 2 whole hours in a row was a record for me lately. This is ridiculous and its no way to live. Can't I cash in some other body part and trade it for this breathing thing?

(Watch as MS Girl trys to bargain with the MonSter):
"Look, my left arm- I hardly use it, don't really need it. I'm a rightie. I could get along without it. So make it numb or weak or whatever. Take it instead! Or my vision- seriously! I have gotten pretty used to not seeing so well, to pirate patches and all that. My left eye is pretty useless anyway. Do you wanna blind it out or something? I just need to be able to breathe and not worry once an hour that I am on the verge of my imminent death!"

(And here is where you know she is Really getting desperate):
"Look, just give me back the Fire Legs. Really. I can handle it. I bought 2 new ice packs, which means my freezer is stocked full. I can cover myself in ice and really, its not that bad. I mean ok, its Bad, but NOT AS BAD AS THIS STUPID INABILITY TO EVER CATCH MY BREATH!"

(MS Girl attempts to take a slow, deliberate breath to assemble her thoughts. Sadly she only manages to make herself dizzy and then has some sort of coughing fit where it seems she only choked on her own saliva or something equally stupid):
"You know you really aren't very smart to play your hand this way. We have a long life together my little MonSter friend, but if you wanna play your spades upfront, that's fine. I'm in it to win the war. And I have troops the likes of which you've never seen. And I am officially Done asking The Powers That Be for help in 'making this pain go away'. Oh no, Dear MonSter...I have wised up to your shenanigans and I know now better what to ask for..."


I just ask for strength. Just give me the strength I need to fight this new battle and I will never never never give up the war. I don't ask you to fix me, to cure me or to heal me. If you have the ability or inclination for that sort of thing, there are a lot of people who need it Far more than I do. Heal them, okay? I just need a little more strength to get through this one without losing my mind or my fabulous sense of humor, okay?
Okay then.


Amen.

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.

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 horrific...it 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...

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.

Survivor

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:
http://www.crazysexycancer.com/

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.

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 up...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.

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 :-)

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 props...it 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...

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 :-)

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 July...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... :-)

"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. :-)

IVIG

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.
XOXOXO

Disabled

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. :-)

In most areas of my life I consider myself an overachiever. I am also a bit of a perfectionist. I expect a lot from myself, sometimes more than is humanly possible; hence, my husband often teases me about trying to be "SuperWoman".

I am disappointed in myself for not healing faster, for still not being able to see straight...heck, I am even disappointed in myself for having MS! I am being silly, I know, but it is hard for an overachiever to swallow that she is approaching TEN weeks of "binocular diplopia" and showing little signs of improving vision. Why is my brain not healing faster?!?!?
It can be very discouraging.

I feel as if I should be moving forward and getting on with life, getting back to work, back to driving, looking for a house, going out with friends, etc, etc. Yet it is very hard to move forward and close this chapter when it hasn't been resolved. Tomorrow is my 8 week follow up at Shepherd Center, where hopefully they will tell me:
A) Yes, you are taking a bit longer to get your vision back, but still within normal parameters for this disease. Just hang in there and be patient a bit longer, OR
B) Hmmmm, you should probably be able to see by now, perhaps we need to run some tests and see what's going on in that noggin of yours, OR
C) No, you should definitely be able to see by now. Episodes ("detours") don't last this long. We could be looking at more permanent damage and disability here.
Obviously I prefer choice A). B) would be manageable. C) less than desirable, but then at least I would know what I was up against and could face it head on.

When the future of your eyesight is still in limbo, it is hard to move on and think about normal, fun things. But I hope to have answers soon and will keep fighting the good fight ;-)

We just returned on Tuesday from a destination wedding weekend for our friends Paul and Karen and we leave again tomorrow for Chris' uncle Rob's wedding. Lots of June weddings! But it has been nice to be able to attend them and be somewhat social (even if I have to constantly wink at people to see who I am talking to...I refuse to wear my pirate patch at a wedding - it just doesn't go with formalwear!)

So for anyone out there reading this - send me good luck "Choice A)" thoughts tomorrow 9am.
Will keep you posted and write more soon.
XOXO

Hasta Luego

Well we are pretty much packed and headed to Mexico tomorrow.
Wishing I knew more Spanish... at least I know the most important word:
Margarita!!!

I am running a bit of a fever so its off to bed with me.
Buenos Noches!

Long Detours

I am feeling a bit dejected today.
I think I am just tired. I recently went up to my full dose of Betaseron and it has me feeling less than stellar. My left foot has been numb on and off all day and I keep tripping over it. And the icing on the cake: My vision still isn't back to normal after 8 weeks.

Dr. Thrower told me the typical lifespan of an MS "episode" (or, "detour" as one of my bestest friends calls it) is 4-6 weeks. So naturally, being the over-acheiver that I am I assumed I would have this thing licked in 4 weeks easy.
And here we are having just passed the 8 week mark with 9 fast approaching and I have to wonder WHY am I not healing faster??? It must be because my brain is SO incredibly large that it takes at least double the normal time to heal...right? ;-)

I met with an Occupational Therapist at Shepherd Center on Monday who told me that while there isn't anything I can do to heal my brain (except be patient) there are exercises I can do to strengthen my eye muscles, hopefully giving me more than 2 hours per day of decent vision with one eye patched. It's sort of like Eye Aerobics!

At any rate my follow up with Dr. T is Friday the 29th at which time if I still can't see straight then I am hoping he will just sprinkle me with his MS Fairy Dust which he reserves for only his most favorite patients and I will be all better.
Wouldn't that be nice. :-)

Smell the Roses

For those of you that may not know, I am 5'11"with a short torso.
Yes, it's true. I have Very long legs.
Also, I have always been someone who walks Extremely fast.


Partly this is because my stride is longer than most. Or as my friend Angela says, she has to take 3 steps to every 1 of mine just to keep up. But it is also because I enjoy being a person on the move. I am impatient, I like being busy,
I like to go-Go-GO.
I am not someone who strolls or meanders.
I walk fast. Or, I used to anyway.


It is frustrating to try to walk when you can't feel the ground under you because both your legs are numb, and your balance is off so you look like a drunk (and not getting ANY of the benefits of actually being drunk!!) and you reach for every piece of furniture you pass just in case you lose your footing which could happen at any given moment.

Frankly, on days like that just getting from the couch to the bathroom is utterly exhausting.


Chris and I attended the wedding of our friends Zach & Deborah this past weekend. It was a lovely weekend with some of our dearest friends. And despite the pleas to my body, the night of the rehearsal dinner, my legs went numb...and continued to be numb off and on all weekend long. And while it is was embarrassing at times and I would have preferred to have feeling in my legs, I found that when you are with real friends, it doesn't really matter. The "415 girls" took turns helping me walk to the ladies room, the "415 boys" helped me up/down those darn marble stairs and brought me ice water when my fever was spiking and after a while I forgot that I was dealing with all this medical crapola and just enjoyed being with our friends.


After the wedding, I spent a few days with Jennifer (my best friend from childhood) and her family who live in Cherry Hill, NJ. Jennifer is an RN so she isn't at all squeamish about medical ailments and it would seem her daughter Lola, who is almost 3, is following in her footsteps. Upon arriving at their house Sunday evening I was way past due on my injection so I quickly began getting out my equipment and preparing my syringe. Without missing a beat, Lola sat next to me and asked, "What are you doing Caroline?"

"Well I have to give myself a shot."

"Why?"

"Well because I am sick and this shot will help make me better."

"Can I help?"

Not wanting to allow a 3 year old to play with needles I gave her the all-important task of swabbing the vial with alcohol and throwing the non-biohazard trash away. She was thrilled.

Then taking advantage of my RN friend I asked Jenn to give me my shot, which she gladly did. You can always tell the RNs from the rookies because RNs shots don't hurt. Barely felt it.

And Lola who has sat and watched the whole thing without being the least bit squeamish (Future RN, I just know it) looks up and asks, "All better, Caroline?"
And when an adorable 3 year old smiles up at you after wholeheartedly helping prepare your injection...How can you not feel all better?


So after a cancelled and then rescheduled flight home to ATL, I found myself for the first time since my diagnosis...in a large airport, alone, tired and legs a little wobbly with no friendly or husbandly arm to hold onto for support. I was nervous, yes, but also determined to make it to baggage claim by myself. I began my slow walk down the concourse and discovered something: walking at tortoise speed wasn't going to kill me. It didn't even hurt. In fact- it gave me the opportunity to people watch (which I love), to stroll, meander even...and I found myself smiling. I am alone in the ATL airport, my legs wobbly, my vision absolutely horrible and still seeing double-everything...and I am smiling because at 27 I finally realize- what's the big rush? Why did I have to walk so fast my whole life? What was I in such a big hurry to get to?

A friend once gave me a book called "The Precious Present" and if you haven't read it, you should. I re-read it at least once a year (its very short) to remind myself its okay to live in the Now and enjoy the present. Well nothing has hammered that point home like MS has. I am so thrilled for every day I wake up and feel good. I don't mind that I have to walk a little slower or cover one eye to be able to read something. I am grateful for the health that I have and for the good days.
I am looking forward to more opportunities in my life to stop and smell the roses...

Good Days

As I am learning to live with "the MonSter", I am discovering that there are Good Days and there are Bad Days.

Today has been Good.


It began with waking up and for the first time in 3 days my legs were NOT numb! Yippee!!!!
So walking has been so much easier today and I am grateful for that.
My vision is more or less the same, but I have started driving short distances, with one eye patched, with permission from my Dr. of course. It certainly isn't easy, lacking depth perception and all, but I am able to do short distances during the day and am starting to feel slightly human again.
I cannot tell you how awesome it is to be able to run to Eckerds or Publix or Starbucks if I really want to (don't worry they are all within a 1/2 mile radius from my house so you are most likely safe! hahaha)


Secondly, at 10am this morning my next shipment of Betaseron arrived. The nice FedEx man brought it to my door, in a styrofoam cooler with cold packs. But wait! That isn't the best part!
After several days on the phone with Aetna...after numerous phone calls that ended with the words "$1600 per month" or "your plan doesn't cover that" Chris and I did not back down. We kept calling and asking what other options there were and we kept at it...and today, my 90-day supply is safely in my cabinet for the low, low cost of $40!!!!! I feel as if we have won a huge victory over the big, bad insurance company, which is silly, really, since they SHOULD be paying for my medicine anyway! Nevertheless, the battle has been won and we will not have to organize a "Help Caroline Pay For Her Betaseron Bake Sale".

All in all, I would say it was a very Good Day. :-)

Welcome to the blog!

This originally began as a series of emails to my Family & Friends updating them during the onset and then diagnosis of my disease (Multiple Sclerosis). I decided rather than continue to overflow their Inboxes I would move my "updates" to blog format. And so here we are!
I have included my original 4 emails (below)...you know, just in case someone stumbles across my blog and needs the exciting backstory of it all! But from here on out its all brand new...so read, share and enjoy!

Since so many people have asked me, "So what exactly is MS? Is it like, 'Jerry's Kids'? Or is it what Michael J. Fox has?" I have decided it would be a good opportunity to explain what this bizarre disease actually is (since I had no clue 4 weeks ago either!)

Multiple Sclerosis is still a big mystery and no one yet knows what exactly causes it, and of course that means there is no cure. It is often referred to as a "chronic, inflammatory, degenerative disease of the central nervous system". It is classified as an autoimmune disorder; however, there is also speculation that MS is triggered by an unidentified virus.

Let's break it down (with a little help from the great Lorna Moorhead):
The latest theory on MS is this: Your white cells (the warriors of your immune system) suddenly decide to stage a coup. They begin attacking the myelin, which is like the big wall protecting the kingdom (aka Your Brain!) Well, these rogue knights (white cells) make their way into the kingdom and begin to wreak havoc on the kingdom's workers (your nerves) and things go berserk.

Well the problem with all this is that the kingdom needs these workers to keep the kingdom running. When these workers (nerves) are injured or captured, the messages get distorted or completely changed. So when the King (brain) sends out a message about regulating food supplies (aka the stomach is full), the message gets confused. Instead, the worker thinks he's supposed to lay a fire in the kingdom's main hall to regulate heat supply and you suddenly feel as if your legs are on fire from the inside out.

For most people with my type of MS, which is called relapsing-remitting, the battle will end and all will be well in the land again. This period of peace and tranquility is called remission; however, when the argument picks up again and the knights again lay siege to the kingdom, you will experience a relapse (also known as an episode or exacerbation).

For all types of MS, the damage and ruin left behind by the rogue army in the brain and spinal cord is in the form of "many scars, or lesions" = hence the names Multiple Sclerosis. MS can cause a variety of symptoms, including changes in sensation (numbness and tingling are common), visual problems (double vision, anyone?), muscle weakness, depression, difficulties with coordination and speech, severe fatigue, cognitive impairment, problems with balance, overheating, and pain. One of the most frustrating things to doctors studying this disease is that it affects each patient so differently, depending on which signals are interrupted.

While I hope my explanation of MS was at least slightly entertaining, I also hope it was informative. I hope that you will all help me raise awareness about it. It is a very mysterious and unpredictable disease that changes its victims lives forever, and while we now have wonderful treatment drugs available, there still is no cure. I look forward to becoming an MS expert in my own way and raising awareness, along with $$$ towards research. But more on that later...for now, thanks for reading and thanks for being a part of my wonderful support system. Check back soon for more updates and info! XOXO

Slow and Steady Wins the Race (5/21/07)

Dearest Family & Friends,
It has been 5 weeks since this wacky journey began and though my vision is still not 100% it (usually) gets better every day. Some days are better than others (Isn't that a U2 song??) but I do feel that I am making progress. It is still rather hard to read as the words start to mush all together after about an hour of reading a book or emails. Nevertheless I am grateful to have the ability to read even for a little while!

I started my Betaseron injections (aka Wonder-Drug) just over a week ago and this morning I did the first "upping" of the dosage. Apparently it is a pretty strong drug (the stronger the better, gotta heal those brain lesions!!) so Dr. Thrower put me on a schedule that weans me on to a full dose. I am doing great with the actual injections, though I do feel a bit like a human pincushion! hahaha. The only downside to the Wonder-Drug is that it takes a while for my body to get used to it and causes me to feel flu-like and run fevers, which in turn makes the double vision worse. SO annoying. Sometimes it feels like two steps forward, one step back...but I AM moving forward. :-)

I have to share this one last thing: many of you know I am obsessed and fascinated with cards. I love picking out cards for people's birthdays, anniversaries, or just because. I think receiving something in one's mailbox other than junkmail and bills is such a wonderful surprise these days. And I would be lying if I said I didn't love receiving cards, too.
Well, let me tell you I have Never had so many cards in all my life. I taped them up all over my kitchen cabinets and I am actually starting to run out of room!!! Whenever I feel a little bit sad or dejected about this whole thing, I go stand in my kitchen and re-read all my amazing cards and I am instantly reminded that I am not alone in this journey and that there is still so much life to be lived and so many laughs to share with all of you.

I cannot thank you enough.
Looking forward to re-joining society with 100% single vision very soon...
Slow and steady wins the race :-)
My love always,
Caroline

Diagnosis and Treatment...we have a plan! (5/6/07)

Dear Family & Friends,
Well, we had a very informative visit at the Shepherd Spinal Center with an amazing man named Dr. Ben Thrower.
He is quite brilliant and wonderfully compassionate.
He carefully and thoughtfully found the words to tell Chris and I that, I do, officially have Multiple Sclerosis.
So at least we know what we are battling...
Now it's time to kick some serious MS butt!

Short term plan: 3 days of Intravenous Solu-Medrol, which will hopefully get my vision back on track more quickly and get me feeling lots better in the near future. Shepherd has sent nurses to my apt to run the IV and tomorrow is Day Three! Yippee! SO tired of having this needle stuck in my arm. It just doesn't go with any of my outfits. ;-)

Long term plan: In the next few weeks I start an exciting new drug called Betaseron, which is used to slow down the progression of the disease so I can live as normally and as lesion/disability/pain-free as long as possible (well...not too normally, I mean God knows I don't want to be Normal...how boring!!) :-) They will send another nurse over to teach me and Chris how to give myself injections of this Wonder-Drug, which I will do every other day for the rest of my life, or until they figure out how to make a pill form (can't come soon enough...I detest needles. Doesn't everyone??)


You know, when bad things happen...when you lose someone close to you, or you are in a terrible accident, or a doctor gives you less than stellar news...I think it can be very easy to feel alone. Hearing the news that I have a chronic, degenerative disease of the central nervous system that could very well lead to some serious disabilities...well, frankly, I was ready for this feeling of isolation to strike, and yet it never did. Because YOU PEOPLE just wouldn't allow it!!!

I have never been so touched by the outpouring of love and concern that Chris and I have received over the past 3 weeks. It has been truly Astounding and has more than once brought me to tears (happy, grateful tears!)
We cannot thank you enough. Thank you for the encouragement. Thank you for the thoughts and prayers.
On the days when we were too tired to ask for help, Thank You for finding ways to help anyway.
Thank you for helping us both keep our senses of humor, which we find more important now than ever!

We are so grateful for each and every one of you.
From the bottom of our hearts, Thank You.
Our love always,
Caroline & Chris

Medical Drama Update (from 4/28/07)

Hello everyone,
Wanted to keep y'all in the loop and I may have to keep this one short because my eyes are really not cooperating today!!

My wonderful Dad and Stepmom, Sheryl came over Thursday to give us the results of the spinal fluid tests in person. Along with my double vision and the MRI results of my brain my doctors seem to think I have MS (Multiple Sclerosis). We are in the process of lining up a second opinion with a neurologist at the Shepherd Spinal Center who specializes in MS and see if he agrees with that diagnosis as well.

It is hard news to hear, of course, but we are staying positive and anxious to talk to the "MS Guru" at Shepherd. We cannot thank you all enough for the phone calls, the Daily phone calls (you know who you are!! haha) the cards you have sent, the flowers you have sent, and the food you have brought.

All of you and your kind and thoughtful words and acts have made a very dark 2 weeks SO much brighter. :-) I know that no matter what happens, with friends and family like you on our side, we will get through this.

We love you all so very much and will send more info after we meet with the MS Guru!!!

Our love always,
Caroline & Chris

PS- I should think people with MS deserve a handicapped sticker, right?? I have always had the Worst luck with parking spots...maybe this is a chance to make up for that?!?!?
Haha...you knew that even MS wasn't going to mess up my sense of humor, right? ;-)

Medical Drama 2007 (email from 4/24/07)

Though I have always known I was a bit of a “Drama Queen”…really, this is getting ridiculous. After I swore off medical drama last year, it has somehow managed to find me once again.

Last week I began having double vision (binocular diplopia) which until you have experienced it, is quite unbelievable. There really is TWO of everything. The double vision was quickly accompanied by horrible headaches. A visit to the Opthamologist led to the Neurologist which led to many lab tests and an MRI of my brain. Unfortunately, the MRI came back “abnormal, but inconclusive”. Essentially there are some spots on my brain and no one is exactly sure what they are.

So on Thursday, Chris and I headed to Kennestone Hospital for a spinal tap and a round of neurological tests. As for the spinal tap, we will just say I have officially found something worse than a root canal…and we’ll leave it at that. After the tap I was instructed to lie flat for 24-48 hours afterwards. After 2 days when I should have felt better I could not sit upright or stand without a raging “spinal headache” as they called it. A few phone calls later the verdict was that I was leaking spinal fluid from the lumbar puncture on Thursday. Leave it to me to get whatever possible complications are possible (Drama Queen!!!) So we went to the doctor yesterday where her performed a procedure called a Blood Patch, which is entirely disgusting and involved more needles in my spine. But so far, it seemed to have worked and patched the hole. I still can’t sit upright, but now its because my back is so sore and swollen from too many needles in my spine! Also have to be flat for another couple days so that the hole will stay closed.

We are still waiting on many test results, and as of now have only officially ruled out Glaucoma, Meningitis and Diabetes. It has been over a week and the double vision is still constant (and typing is a real challenge, so please forgive any typos!!) But hopefully the bloodwork and spinal fluid test results will come back soon and we will have more answers. We are trying to stay positive and hoping for good results this week. The waiting and not knowing has been really hard. So please keep us in your thoughts and prayers and I promise to email again when we know more.

We love you all very much and appreciate your prayers, phone calls, visits, etc. more than you know.
Our love always,
Caroline & Chris