Sunday, October 28, 2007

"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

Wednesday, October 24, 2007

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...


Friday, October 12, 2007

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. :-)

Thursday, October 4, 2007

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 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.