She's not sick!

Riviera Maya, Mexico ~ Nov. 2010

Just a month ago I was swinging from tree to tree through the Mayan jungles, in a lot of pain. But of course you can't see that in this picture. All you are able to see is a woman who claims living in pain with Fibromyalgia having the time of her life! A picture can say a thousand words; but those words will only tell the story of the person looking at it. And then again, there's the story of the person who lived it.

A lot of people questioned whether I was truly sick after looking at my vacation pictures. "How could she say she's in so much pain and go zip lining? She's not sick!"

Looking out from my suite balcony

What people can't see is that I spent most of the vacation time in my suite. This was the first vacation ever I got to enjoy the hotel room as much. A week vacation and ordered room service two nights in a row and one breakfast in bed.  Now, keep in mind my definition of a vacation used to be extreme excursions, cocktail sipping by the pool, participating in every game the entertainment group would have, dinners every night in the different restaurants the resort has to offer (have to try each one!) spa treatments & massages, more drinking by the beach, visit the town and party all night with the locals and the next day do it all over again.

Punta Cana, 2007

Cabo San Lucas 2009

Riviera Maya, 2008

Puerto Rico, 2008

It's hard for me to look at these pictures and not wanting to continue living my life that way! If Fibromyalgia has taken over my body, then there's no way I would let it take over my life.

Last year, my friend Janine got engaged and told me she would have a destination wedding. I told her to count on me...that I would be there getting her all glammed up for her special day. The beginning of this year we booked the hotel where they would get married. I was so excited. As you can tell from my pictures, that meant more exciting fun with friends! 

Then came March 5th, the day I woke up with flu like symptoms and called out sick. It was a Friday. I will never forget that day. I'm the type that doesn't run to the doctor and waits for the body to do its "thing"! Well, not this time. I needed to get well...PRONTO! I was preparing for the NY Wedding Channel Couture Show....yes, bridal market madness!!! There's no way I could be sick, not at this critical time. But the one in critical condition was me. I felt like death.

I went to my doctor and told her she needed to fix me right away. She told me she needed to do some blood work, of course, and sent me home with an order of rest and plenty of fluids.

On Saturday morning (after a sleepless night) I get a call from the doctor's office. She needed me to come to the office to discuss my results. Oh, oh! That didn't sound right to me at all. But I never suspected what was coming. 

_"You have Epstein Barr Virus and you need to be excused from work for 4 weeks"

_"Noooo! I can't be off of work for that long!!!"

She told me she would fax the note to my job because I needed to stay off my feet- no driving, not engaging in any type of activity that could risk bursting my spleen. 

I knew right away this would cost me my job. My position needed to be filled right away. Someone else needed to be in charge of putting the show together. 

You see, when you work for such prestigious designer as Rosa Clara www.rosaclara.es there's a huge reputation to keep up -the name, the class...and thousands of retailers that have been waiting patiently to view the new collections. And when the headquarters are in Spain, things can get a bit more challenging. There was only 3 of us in the office- one assigned to each department (accounting, clients relations and logistics) and of course the sales manager and all our reps spread around the states. That's all they needed to run things in the US. 

Three people in the office. Um hum. A great idea if you don't anticipate having one of them getting so ill at a critical time. 

Needless to say, I lost my job.

But wait, they can't do that? You can't lose your job because you're sick! Nope, they weren't being unreasonable. The office, just like a car, needs all wheels to run. I understood completely. 

After four weeks with the symptoms of the Epstein Barr Virus (EBV), I continue to feel like hell. I went back for follow up and discovered my levels of the EBV were still too high and now my Vitamin D level was extremely low- at 11.  Doctor told me that put me at risk of a stroke!

Desirable: greater than 40 ng/ml or 100 nmol/l

Hypovitaminosis D: 20- 40 ng/ml or 50 - 100 nmol/l
Insufficient: 10 - 20 ng/ml or 25 -50 mmol/lDeficient: below 10 ng/ml or 25 nmol/l<

So now,  I'm told the EBV sometimes could take up to 8 weeks to recover and getting Vitamin D 50000 unit treatment could help with the horrible muscle and joint pain I was experiencing too.

8 weeks passed and I was miserable. I went on to get tons of  Xrays, MRI's, ENG test, EMG test, Lupus, Lyme, Thyroid, Arthritis, Aids...and went to see every specialist on the planet- ENT, Neurologist, Cardiologist, Rheumatologist and most recently Psychiatrist.  Yes, all to conclude one thing: That I'm perfectly HEALTHY.

Really??? Hmmm, so how come I feel like I'm better off dead? Not that I've contemplated suicide, not even once since I got sick. I have two amazing children who give me strength and a reason to fight each day. 

The only thing I've contemplated is feeling the way I used to, being healthy. Getting back to the gym, changing my dietary habits, leaving a greener life. La vie en Green!

So when someone tells me: "You don't look sick" I say: "How does sick look like?"

Or like my grandfather would say: "Ah estas llenita, saludable!" (You're robust, healthy!) In spanish culture (old school) being overweight was a sign of health. 

_"No grandpa, I've gained weight because I haven't been able to work out in months, because all these medications are making me bloated and I don't sleep at night. Because I'm not healthy".

Of course, he didn't get it. Like so many others.

So what am I supposed to do? Let myself go so I can look "sick"?  Lay on the couch feeling sorry for myself and becoming depressed? Become a nagger?

My life has changed enough. I spent the summer laying on the couch (my new bed) crying because I couldn't enjoy any of the activities  my kids were doing.

_"No, sweetie mommy can't go to Great Adventure with you today"

_"No hun, mommy is not feeling well, daddy will take you the park this time"

I will swallow my tears from seeing the pictures of the fun day I had missed. I didn't get to see my 5 year old daughter go on her first roller coaster ride. I missed her 1st TV commercial audition.  My friend Barbara had to take her for me. I was so devastated! My chest was hurting so bad from all the crying. It brought the worst flareup. Seeing how my illness was affecting my loved ones hurt me more than any pain.

I needed to get my life back.

All my prescription medicines took over my kitchen cabinets. I had a pharmacy in there!  Until I decided to take the bull by its horns.

It's not easy though...this natural route of vitamins, supplements, and diet. It hasn't been a year since I first heard the word FIBROMYALGIA. Trying to stay positive and cheerful is really hard.

Even writing this article today has taken me hours. My head feels like I have a full High School band banging away hell tunes, my elbows and wrists hurt, my fingers get numbed and I get double vision. Thank goodness for this laptop that allows me to type while laying on the couch, otherwise my back would lock up and paralyze me for days, like it did recently. But of course, no one can see that. I don't let them see it.

But today, after a sleepless night (and when I say sleepless, I mean, not even a minute of sleep) I've decided to make my pain visible -just for the day or until the she-mosnster leaves my body. Feeling like a zombie and seeing everything through a fog, thinking twice before trying to articulate a word...this blog seemed a way more attractive vehicle to express my emotions- even if my fingers are yelling at me.

So to those who will continue to question whether I'm truly sick or not. I have one thing to say:

"I have Fibromyalgia, Fibromyalgia doesn't have me!"

Without having to prove to any doctor and no one but myself, I will continue my journey to wellness hoping to bring my body to a healthy balance, one that will allow me to continue doing, what I'm doing anyway, but without PAIN, with better sleep hygiene and quality of life, with the same smile; feeling grateful...because if it wasn't for Fibromyalgia, I would've never known how strong I really am. 

I'm living a new life with a new purpose. And that's plenty of reason to be grateful.

I choose to live my life to the fullest, no matter what.

I could've cancelled my hotel reservations. Even my friend had suggested I should. I told her I wouldn't miss it for the world. I was afraid- I'm not going to lie. I wasn't looking forward to the flight, panic attacks were taking over the weeks before the trip, and none of my summer clothes or bikinis fit. For the first time, there wasn't going to be any pictures of me in a bikini. I would walk around with a wrap around my waist. No way would I show off the extra 25 pounds I've gained in these past 10 months. There would be no crazy drinking and partying- definitely no extreme outdoors activities. This time, it was going to be a relaxing vacation. And it was. I'm so glad I didn't cancel this trip. I took part in the most romantic wedding I've ever been to, allow my body to rest and enjoy the non-humid, comfortable warm weather, and charged up enough batteries to go on a Cave/Jungle adventure!

Did I pay the consequence of my last day adventure? Yes I did. Big time. But it was so worth it!

This is how I choose to live my life.

~Viva la Mari