"Toma, when are you going to blog again?"
"Ah, well...I dunno. I just don't really have that much to say."
Yeah, I said it. Think of Judge Judy. Baloney. I actually have a lot to say, I just have been remiss in putting it all out there.
In June of last year, shortly after moving home to Florida, I was diagnosed with Multiple Sclerosis.
"WHAT? TOMA? WHY DIDN'T YOU TELL ME?!?!!!!"
Because it wasn't about you. Or what I was keeping from you. I had to wrap my own brain around it. It took about a year, I have MS, and it's really no big deal.
I was inspired to write this entry after reading this blog that I just 'happen' to come across through someone who DOESN'T have MS and doesn't even KNOW I have MS.
Well, now she does. Hi, Kristy!
That woman's blog entry could have been written by me. In fact, if I hadn't sent you the link above, I was tempted to copy and paste it, nearly, word-for-word, because it's like she's a fly on the wall of my life.
But this is my story - for you.
I moved home to Florida last March, as everyone knows. After 15 years of traveling and living all over the world, by the grace of God and the power of negotiation, I was offered a job as Lodging Manager at Homestead Air Reserve Base, just south of Miami, at the top of the Florida Keys. I'd been home about a month, and my Mom and Bonus Dad were outside helping me with some yard work. Shortly after we finished and they went home, I started to feel pain in my right eye, which transitioned into a MASSIVE migraine headache, accompanied by a blind spot. I thought nothing of it - only that I'd been doing yard work without eye protection and I (most likely) got something in my eye.
Over the next several days the pain didn't subside, but it didn't get worse, either. I mostly ignored it, as I was the 'new girl' in town. You can't start a new job and within 2 weeks take sick time.
Especially when you're the boss.
I let it go on for - maybe - a month. The blind spot eventually went away, but the headaches did not. I got a referral for a great family practitioner in Homestead, Dr. Linda Fagan.
Let me point out right here that I really had NO IDEA this could be MS. To be blatantly honest, I didn't even really KNOW what MS was. I just knew that my friend, Jessica, was diagnosed with it about 11 years ago, and my girlfriend's Mom, Susan, had it. I told Dr. Fagan my symptoms. She took one look in my eye and immediately sent me to the eye doctor down the street (Man, I love small towns). What she didn't tell me (so as not to freak me out), was that she feared I had MS. She told me she was concerned that I'd scratched my cornea (liar), and that I needed to go and see the eye doctor down the street - immediately. What she ALSO didn't tell me is that she'd had 3 OTHER patients, in the last few months, diagnosed with MS.
The eye doctor was an optician, Dr. Lofton. He did a physical exam, followed by an ultra sound. The result of that ultra sound?
"Toma, your optic nerve is swollen."
"Um, okay. What do you take for that?"
"No no no, Toma. It means something is 'pushing' on your optic nerve. I don't want to alarm you, but it could be anything; maybe a tumor. I suggest you see a neurologist."
About a week later, still not really freaked out (I know, right? How was THAT possible? Oh right. Because I know that God's got my back. More on that, later.), I made an appointment with a neurologist at Baptist Hospital near my house, Dr. Kobetz. Dr. K concurred that my optic nerve was swollen. He did a physical-neurological exam, saw nothing abnormal. He suggested I see an OPTHAMOLOGIST, vs. the optician. "Toma, if you can stick around, I'll call my buddy on the 3rd floor right now. If he can fit you in right now, can you go?"
So, I visit his colleague, Dr. Spektor (tee hee hee...and eye doctor named 'spektor') - and again, optic neuritis. I explain to him what has happened and the circumstances leading up to my visit and he says "So, you've had an event?"
When he says 'an event', I'm thinking a banquet, right?
He does a more intense exam and concurs that there's something definitely amiss. I head back up to Dr. Kobetz (neurologist) and Dr. Spektor accompanies me so we can all 3 talk in the same room. How often does that happen in today's day and age?
So. There was chatter and medical words and terms I don't know and we-really-aren't-sure-but-we-think-it's-nothing-so-why-don't-you-have-an-MRI-just-to-be-sure.
I think my FIRST round of MRIs was somewhere like 6 of them. Two hours in the tunnel/circular coffin. 3 with contrast, 3 without. Results inconclusive but Dr. Kobetz told me he saw spots in the white matter of my brain that were called "Dawson's Fingers."
"OH! You mean like Pacey and Joey, in the Creek?"
"No, 'Dawson's Fingers' are most commonly found in patients with multiple sclerosis. I don't want to freak you out, but you appear very strong and faithful, so I thought it was best to be honest with you."
"Good call. What now?"
"I hate to tell you this, and it's the last thing I wanted to do, but the only REAL way I can diagnose you with /rule out MS is to do a lumbar puncture."
"A spinal tap."
"Can I have drugs?"
"Awesome. Schedule it."
INSERT APPLICABLE SIDEBAR HERE: I neglected to mention this little issue to ANYONE in my family, except my brother, Sebastian. More specifically, I kept it from my mother, Suzy. God bless my mother, but she worries about what she is going to worry about. Much like a pregnancy test, you don't need to reveal the results until you're sure, right? No sense getting everyone all worked up. (BTW, a positive pregnancy test would have been great news at this point. After all, I would have had to change my name to Mary and find me a manger.)
Sorry. Back to Suz.
So - I decide I'm going to do the spinal tap and enlist the help of bestie, Tiffany Welch. Not only does my mother not handle a 'possible' diagnosis well, she does even worse in hospitals. Big 'ol gag reflex.
Unbeknownst to me, Sebastian decides that he needs to 'run it by' our Mother, so she's not COMPLETELY blindsided.
"So, Mom...Toma's going to have a spinal tap. She can't seem to get rid of that pain in her eye and the massive headache, so her doctor wants to rule out everything. She's fine, everything is fine, he just wants to rule anything out. Can you pass the potatoes?"
"Rule WHAT out?"
"Lots of things - you know, a tumor...MS...."
I immediately launch into the no-I-wasn't-purposely-avoiding-telling-you-I-just-didn't-want-to-worry-you-it's-all-going-to-be-fine-please-don't-freak-out defense.
She wasn't buying what I was selling. Not even a little bit.
As the day approached, Tiff rang and told me that her schedule was throwing a monkey wrench in everything, and she wasn't able to come down and get me through it. She thinks I really need to ask my Mom. When I explain that it just isn't an option, it was then when I discovered what true sisterhood really is.
Tiff replied with, "I'll call your Mother."
For some reason, when you hear it from people that don't have your blood running through theirs, the news just doesn't seem to be as bad.
From what I 'understood' the spinal tap, itself, was relatively easy and I'd be sedated. However, the recovery could be very lengthy, if you didn't follow the doctor's instructions TO THE LETTER. Well, since I believed I could put God in a box and do His work for Him, I was fully prepared to go and have the spinal tap, and return to work the next day.
God then proceeded to LAUGH at me.
Mom, of course, volunteered to take the time off work and be right by my side through the entire thing. I told her that this involved checking into the hospital, getting a bracelet, and IVs. She took a breath and told me she was ready. I was completely unaware that she was freaking out on the inside. Well done, Momma Dukes! So, that said - she was an absolute CHAMP.
I checked in as an outpatient, got the bracelet, got the IV, and Mom sat right there and didn't bat an eye or shed a tear (on the outside). The procedure was quick, painless and I was clueless. I was on a 'sedative', but this girl was a Disney character for 11 years. Come on now. I clocked out and they woke me up when I was ready to walk out of the surgery center. Rock on.
Dr. Lustgarten (my surgeon) told me that I must lay on my back, flat, for a full 24 hours, to reproduce the spinal fluid, and to drink lots and lots of caffeine to keep the headache away. Me? Flat on my back, being lazy drinking chai tea? CAN DO. I followed his directions to the tee; smooth sailing the first few hours after I got home.
Until I got up to visit the restroom.
Mom canceled all of her work plans for the next week and proceeded to stay by my side, without rest, without fail, for the next 7 days.
So then, there was the waiting.
Dr. Kobetz - my neurologist - told me the results would be back within a few days, but that he would be on vacation, so don't freak out if you don't hear from me for a week or so.
Oh. Okay. You go out and enjoy that boat. I'll be right here wondering if I have a debilitating disease. Take your time.
I say that in jest. Seriously, I honestly didn't believe anything was wrong and had done ZERO research on the possiblity of MS. AGAIN, why worry until there's something to worry about? It is an absolute waste of time and, check
Matthew 6:12 Matthew 6:25-34 It's a sin (thanks, Melissa Murray for that!).
Saturday, June 6th at 10am, I was cleaning my kitchen countertop. My phone rang...and my life changed.
"Toma, I'm sorry to tell you, you have MS."
He went on and on about igg levels and mylen protein and thisiswhat'swrongwithyou number and that'snotsupposedtobethathigh number. I have no idea.
"Toma, you need to get a second opinion and begin treatment, if the MS specialist concurs with your diagnosis. Go and see. Dr. Silvia Delgado at the University of Miami. She's the best in the field."
Since 6 June 2009 the following statements are true:
To those of you reading this that have listened, counseled, researched, donated, called, emailed, sent flowers, sent cards, prayed and loved me.....I want to say 'thank you'. Seems to not even do justice to what I want to express to you. But at the same time, they are the two words I can never say enough. You are my heart, my soul...my insides and I love you all.
- I have Relapsing Remitting Multiple Sclerosis.
- Betaseron is my drug of choice. I inject it every other night before bed. It was rough at first, and extremely difficult for about 90 days. Once my body got used to it, I don't even feel it in my system.
- I am no longer seeing Dr. Delgado. Since my Mom taught me "If you can't say something nice, don't say anything at all." I'm going to leave that one alone.
- I've been introduced to the AMAZING staff at Sunrise Medical Group and am under the care of Dr. Brian Steingo. More specifically, I am cared for by Jenn Smrtka, Nurse Practicioner, specializing in MS. I adore her.
- MS is no longer Annette Funicello, confined to a wheelchair.
- MS is just an adjustment, not a sickness. I think this way, thanks to my 'face' of Multiple Sclerosis, Jessica Gagne. Since being diagnosed in 1999, Jessica has birthed 3 children and is a personal trainer, FOR A LIVING. Take that, MS.
- I was handed lemons, and I've made lemonade. I've now refocused my lens and plot my day in a 33/33/33 balance: eat, sleep, exercise. I've chosen a mostly-organic/non-processed diet called The Swank Diet, specifically written for people with MS. I sleep 8-10 hours a night and come home every day, for lunch, and take a 20-minute power nap. I attend spin class several days a week and swim when I get the time.
- I've never felt better in my life.
- I take NOTHING and NO MINUTE for granted.
- After 15 years living around the world, my friends (you) were my family. Now, I am (finally) geographically close to my family. And I can't spend ENOUGH time with them, since moving home. They come before any friendship. Period.
- I don't believe in chance or circumstance. Or luck.
- God isn't PUNISHING me with MS. He didn't make this happen because He's mad at me or because I'm a sinner. I am saved by grace...fearfully and wonderfully made. God has directed EVERY detail! Do you think it's ANY accident that, after living away from my family for nearly 15 years, I move home, and I'm diagnosed within 3 months? Huh? Do you? I could have been ANYWHERE; Korea...California...Hawaii...but I wasn't. I was home and God is SO GOOD.
- It's really no big deal.
To Dr. Linda Fagan, her amazing nurse, Glenda Talley, and her daughter/office manager, Jessie, who I know are reading this. Thanks to you three, I now have a circle of friends that are not only close, geographically, but are close PHYSIOLOGICALLY, because they are just like me! You have opened your family, life and your home to me (and to them) and I want you to know that...in my world...friends AND family are one in the same. You three are the closest thing to blood in Homestead and I love you.
To my Homestead family; Rick, Kim & Arilys. Words could never express how much you all mean to me. You bring beautiful things into my life each and every day, and I just adore you all. Kim, even though the miles separate us, you're never far away.
To my Father & bonus Mom, thank you for the fervent, effective and unending prayer. You stand in the gap when I don't want to and Daddy, you always come to my rescue when I need you to come down for a week and tackle my 'Daddy Do' list. Shot out to Kathy for always willing to sweep my floors because you know I hate to.
To my Mother & bonus Dad - what is there to say to the two of you? Having you only 80 minutes away is nothing short of God's grace. It's Hurricane football season and nothing stops us from our tailgates and 10-yard-line seats at Dolphins Stadium! Mom, you ALWAYS...ALWAYS...do more for me than I could ever imagine doing for you. You bit the bullet, swallowed your panic and stood by me when I was the most afraid I've ever been in my life. And you continue to do that, every single day.
To my baby brother, Sebastian. You stick up for me every minute of every day. Don't ever stop doing that and continue striving for a life of authenticity. Thank you for being Kayla's Dad, so I could experience true, pure, unconditional love in my life. When you find the love of your life, you find that kind of love doesn't always have to come from a partner.
I want to close this by sharing a conversation I had, late one night, with my niece, Kayla. Most of you on Facebook see me bragging about her, daily. And for good reason! She's absolutely brilliant and challenges me, every day, to just...TRY HARDER and be an example to her and to others.
Shortly after I was diagnosed, I shared this with Kayla:
"So, Kayla - Tante has something to tell you. I have a condition called Multiple Sclerosis. I know you don't know what that is - and you will learn more about it as you get older and take health class in school. Basically, when I move my finger like this (pointer finger moving up and down), that is my brain telling my finger to move. The way that my brain gets the message to my finger is through something called 'nerves'. Multiple Sclerosis attacks those nerves, so I have to take a shot, every other night to make sure that my messages still get sent."
That was around lunchtime. We went on with our day, and enjoyed some quality time together. Later that night, as I was tucking her in and saying prayers, I kissed her goodnight and started to leave. Just before lights out she said:
"So, Tante. Your brain is like the post office and the nerves are the mailman. In order to get to the post office, you need a stamp, and that stamp is your shot, right?"
Like I said. She's brilliant.
And that's kind of a big deal.