The more I researched and learned about what my body was experiencing; trying to get to the root of the problem, trying to find answers, trying to find good doctors, trying to find someone that could relate to my symptoms, trying to explain to people why all of a sudden I was so sick- without knowing how to explain what exactly was happening to me in words that others could understand.....I became so eager and passionate about forming an organization to spread awareness. And although I was still learning and suffering different symptoms each day, I wanted to be a voice. I needed to warn people about how all of a sudden your life could be taken over by a syndrome called FIBROMYALGIA. One that is still misunderstood, misdiagnosed and mistreated. I saw how isolated, ignored, humiliated, disappointed, desperate, discouraged, and overall miserable the people who suffer it felt. I saw how everyone was screaming...but no one seemed to be listening. Why? I asked myself. I was determined to take matters into my own hands and turn everything around. There was no way, I would allow my life to be ruined like that. This is NOT how I like to live my life -disabled, slow-downed, sick and in pain, unable to enjoy my family and do the things I love. I wanted my life back- just like it was! Fun, exciting, active...HAPPY!!
One thing that has been constant beside the pain is my fighting spirit. I'm driven and determined to turn everything around and be able to say one day: "I'm pain FREE!" but even more passionate about educating others to become their own health advocates. Could Fibromyalgia be prevented? I'm not sure. There are so many questions still in the air surrounding this syndrome. But one thing I am certain, we need balance in our life. If we would make sure to eat healthy, sleep well and keep stress under control, many auto-immune diseases could be prevented. This is not a statement, just my humble opinion. I wish someone would've warned me back then when I was running around trying to juggle a hundred things at a time, taking care of a toddler and a teenager, the messy house that needs to be squeaky clean, the stressful demanding job, working out in the gym like a lunatic because I need to look like those models in the magazine, doing all sorts of crazy diets, not sleeping well...always on the run! I'm tired just writing about it! But then, you will say, but that is the life that every American lives. That's right, we can't avoid it. It's our way of life. Well, that way of life...took me to where I am now. It might not affect everyone the same way, but a hectic lifestyle does have its repercussions. And Fibromyalgia was mine.
The labs results say I'm perfectly healthy. My bones and joints hurts but I don't have arthritis. My back feels like it's broken, but I don't even have scoliosis or herniated disks -my back is "perfect". My muscles are tense and hurt but I don't have any pinched nerves or muscle dystrophy. I don't have Lupus, I don't have MS, I don't have Lyme disease, cancer...NOTHING at all...but I get terrible migraines, vertigo, sinus congestion, swollen lymph glands, numbness, short term memory loss, fogginess, sensitivity to the touch, light or sound, IBS, nausea, palpitations, chest pain, endometriosis, chronic insomnia, and PAIN 24/7 that varies in intensity or part of the body but it's always with me no matter what. And to the endless of blood work lab tests, MRI's, XRays and all sorts of tests from Neurologist, ENT, Cardiologist, etc, etc,....I'm perfectly HEALTHY.
I'm not a hypochondriac. I love life too much to spend it feeling sick or sorry for myself. I don't want to feel this way...but I do. I can't help it. Even when I try to ignore it and try to do the normal things I used to do before, I end up paying for it later by having to be in bed for days or even weeks to recover. Is the pain worth that day of fun? Hell yeah! I won't let Fibromyalgia stop me. But this attitude often is misinterpreted by those that don't understand what this syndrome is. I have been judged of not being really sick. People have doubted me- even fellow Fibro patients! Because it's hard to understand how I could be all dolled up, in high heels at an event looking "healthy" and say that I'm sick. Pain is invisible and I mask it very well too. I'm trying so hard to hold on to my old self. I am so proud of who I'm known for, that cheerful social butterfly...I just can't lose myself and become sour and miserable.
So what Fibromyalgia has given me in this year? It has given me courage, endurance, commitment, discipline, will power and it has given me LOVE.
I have met amazing people since I got sick that I would've not met otherwise. They have shown me so much love, compassion, support and have become my inspiration.
March 5th was my Fibroversary and I wanted to celebrate everyone that has been supporting me through my highs and lows of this health rollercoaster that has become my life.
I want to honor those who have strengthen me through my most difficult times and have made things more bearable for me. Here's to my family, Todd the one that has seen me cry when I lost all my toe nails, my hair was falling, my skin became patchy, scaly and irritated with psoriasis...the one that would hold my head when I had explosive vomiting, the one that carry me when I couldn't walk, the one that took the role of Mr. Mom because I could no longer hold a pot in my hand or open a jar, the one that sleeps in another room and doesn't demands attention, the one that loves my extra 30 pounds and still calls me beautiful. Here's to my kids who understand mami is no fun anymore and keep quiet not to give me a headache but hug me on my good days without resentment, that's unconditional love, innocent pure love. That's what keeps me going!
Here's to my mom who tried hard to understand what Fibromyalgia is, who tried to do anything to help me, even starting her own Facebook account to get "closer" to me...hahaha! My mom, the one that offers me everyday to help me clean the house and I don't let her because I still want to feel capable. And the one that has the most patience and understanding to agree to stay home worried when I tell her I don't feel good but I want to be alone. I know she's having a hard time understanding what I'm going through, but she's there for me a 100% unconditionally, with the love only a mother is capable of giving.
Here's to all my friends who have embraced the new me and decided that if Mari can't make it to the party, they would bring the party to me!
Thank you to my wounded healer, Dr. Mark Guariglia, for taking me under his wing, for being my mentor and inspiration. For becoming my back bone, for keeping me strong, for giving purpose to my pain. Thank you for YOU, Ria and for IFAC (International Fibromyalgia Awareness Campaign)! Through IFAC, we have been able to interact with others like us, who struggle each day with this syndrome and find solace and support in our group -a mission I won't give up!!!
To Deirdre Rawlings,PhD for opening my eyes about the importance of nutrition in healing.
To Mardy Ross for giving me an outlet through Lumigrate to utilize my skills for the benefit of others; for inspiring me to write, to focus in learning the lesson before becoming the teacher, to learn to take small projects and not committing to big projects my compromised health won't allow me to finish, for introducing me to great people like Sue Ingebretson, a Fibromyalgia warrior and writer of FibroWHYalgia, a book that has given me HOPE!! She's a vivid example that you could beat Fibromyalgia by targeting the root of the problem. Thank you for your story! Mardy, thank you for introducing me to Robin Thomas who through USANA products I have discovered a whole new approach on vitamins & supplements and skin care. What can I say thank you for all you do, for your efforts in spreading awareness and educating people through your site and your own example, since you're a Fibromyalgia fighter yourself!
Here's to my friends that have stuck around, to the new ones I've made and those to come!
There are so many who I'd love to mention individually but with my Fibrofog I might forget to say a name or two that has been truly amazing to me, and that would break my heart because I don't take people for granted. So to all of you that have been more than loving and supportive to me from day one, you know who you are...this Fibroversary is dedicated to you!
As for this year, my goal is to have the symptoms under control, regain my health and continue to spread awareness.
It has been a hell of a ride! All 365 days and counting...
