Fibromyalgia Care Society of America | Voices of Fibro-Lilly Cruz
fibromyalgia, fibro, fibro.org, fibromyalgia care society of america, caterpillar walk, butterfly bowl-a-thon,
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Voices of Fibro-Lilly Cruz

11 Jul Voices of Fibro-Lilly Cruz

Your Name : My name is Lilly A. Cruz.

 

Your Location: I live in Brooklyn, New York

 

Are you married? Kids? Work? What do you enjoy? I am married to the most patient and loving husband. I have 4 grown sons, 3 born to me, one by marriage, all equally loved. I am currently disabled, and have other comorbidities, along with fibromyalgia that have brought me to this point. I am a registered nurse in the state of New York, and plan to pursue my master’s in nursing education this coming fall. I enjoy reading, listening to music, practicing self-care, and spending time with my friends and family.

 

When did you first realize there was something different about your health? I first started realizing there was something wrong with my health about 2-3 years prior to my fibromyalgia diagnosis. I was more fatigued than usual, I had increased body aches, but I would just have shrugged it off and attribute it to getting older and the result of the mental and physical stress of my nursing career. I was diagnosed in 2012 after suddenly becoming ill with parvovirus and not recovering fully.

 

When were you diagnosed? I was 42yrs old at the time.My fibromyalgia diagnosis changed my life dramatically. It was a blessing and a curse. A curse because I had to leave a profession I loved dearly due to my physical limitations. And a blessing because I was forced to slow my life down, and prioritize what was most important to me.

 

How did your fibro diagnosis change your life? The changes I had to make in regards to my fibromyalgia diagnosis would be firstly I had to leave my job, I learned to pace my activities, I learned the art of practicing self-care but most importantly learned to listen to my body.

 

What changes have you had to make in your life? The first change I had to make regarding my fibromyalgia diagnosis, was that I had to leave my job, I learned to pace my activities, I learned the art of practicing self-care, but most importantly learned to listen to my body.

 

How did your family initially handle your illness?  Initially, my family was in shock especially since I literally became sick overnight. At first, they thought this would be temporary and thought I would eventually get better if I ate better, exercised more etc.

 

What do you feel is the most challenging aspect of Fibro?  The most challenging aspect of a Fibro is dealing with the physical limitations and fatigue. I still haven’t decided which is worse. Currently they are both the worse for me.

 

Fibromyalgia can cause depression and anxiety. Do you struggle with these?   Is so, what do you do to keep your mental health balanced?  I’ve always struggled with depression and anxiety even way before my fibromyalgia diagnosis. I deal with it one day at a time. I cry it out if I need to, but I make sure to pick myself up and do something healthy for myself, like go out for a walk, meditate, acupuncture, yoga, hang out with family and friends and there are times where I just simply watch a good old funny movie and laugh it out.

 

How open are you about your illness & symptoms? I’m very open regarding my diagnosis with my family and friends. They are all aware of the symptoms I deal with and are generally accepting. I’m lucky they will ask questions if the need arises.

 

Besides Fibro, what other coexisting conditions have been diagnosed?  Since my fibromyalgia diagnosis I have been diagnosed with depression, bursitis on my hips, herniated and bulging discs of my spine, chronic fatigue, sleep apnea, Esophageal cancer.

 

What is the best advice you have received regarding Fibromyalgia? The best advice I have ever received was to breathe, focus on what you CAN do, not what you CANNOT do.

 

How do you manage fibromyalgia? I manage my fibromyalgia with prescribed medication like Lyrica, clean eating (at times) acupuncture, daily walks, meditation, Epsom salt baths, aromatherapy, anything pertaining to self-care I am there, experimenting, trying new things, finding new combinations of treatments that will help with my ailments.

 

What or whom inspires you? My Fibro community inspires me, hearing their stories gives me hope.

 

What are your biggest battles now and how do you confront them? My biggest battle right now is trying to cope with the fatigue. The best time of the day for me is the morning, after that it’s all downhill.

 

What is the best/worst thing that has happened to you due to your illness? The best thing would have to be the level of appreciation of life I have in general has increased. It is by no means perfect, but it is mine. And the worst thing for me has to be loss of my income, my profession, my independence.

 

How do you balance your illness with your personal and professional life? Are you disabled I’m currently considered disabled but happy to say I’m working on gaining a higher educational level, so I can contribute and participate in the profession I dearly love and value one day. 

 

What words of encouragement do you have for others who are living with fibro? Never Give Up! Never give up on finding the right doctor, the right treatment, never give up on yourself, but give yourself a break when it’s needed.  In the words of Cinderella “Have Courage and Be Kind”

 

What is one thing you have learned about yourself since your diagnosis? I’ve learned more than one thing, it’s hard to choose just one. I’ve learned how strong and patient I am. I’ve learned I’m deserving of self-love. I’ve learned to put myself first for a change but always help others when you can.

 

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?  For the newly diagnosed I would advise to seek a doctor who believes in what you say, who offers treatments without judgment, one who’s empathetic of your feelings and concerns. This is the foundation needed for your healing.

 

Is there anything else you would like the people to know?  I would like people to know not to judge anyone by how they look, if I could get a $1 each time I was told “you look good, you look healthy, you don’t look sick” I would be on a beach somewhere drinking a daiquiri. No one, and I mean no one truly knows the pain I endure daily. The struggle I go through to get things done. Well maybe my husband knows more than anyone but even he doesn’t know it all, I don’t like for him to worry too much about me. What people see are the good days, I don’t want anyone’s pity, just their empathy. That’s not too much to ask. Is it?

 

Are you involved in raising awareness? If so? How? If not? Why?  When I was newly diagnosed like many of you I searched the internet for treatments and support groups. After a year or so I was invited to a private group called “A Flarey Tale”, if anyone knows my Cinderella obsession then they’ll know this was the group for me. Our motto was “Empowering One Another One Flare at A Time” that’s where I met Milly Velez. We hit it off instantly. I was encouraged and inspired by her story, we had so much in common. I became an administrator for that group and when she founded FCSA in 2015, I became an administrator for the FB page, and then subsequently I was asked to become a member of the board of trustees. Since 2015 I along with my Fibromyalgia community have raised awareness through our Caterpillar Walks, Butterfly Bowl, our FB, IG, TWITTER posts, sharing ideas, positivity, hope and initiating constructive conversations. That’s my involvement in raising awareness for Fibromyalgia.

 

How are you a Fibro warrior? Am I a fibro warrior? A warrior is a person engaged in some struggle or conflict, a person who has shown great vigor, courage, or aggressiveness. So yes, I consider myself a Fibro Warrior, each day I fight for my health, physically and mentally. But also know it can’t be done alone, it takes a village. It really does.

2 Comments
  • Lilly,
    Your story inspired me, but I’m not surprised, because you inspire me regularly. Your Facebook responses, even the tough ones, are always filled with glimmers of hope. That’s a word I think of when I think of you. Carry on my HOPEFUL warrior, keep on being you! ✨🌟💫

    July 16, 2018 at 6:55 pm
  • Anamary
    Reply

    I’m inspired by your strength and your perseverance despite all the illnesses that you are dealing with. You inspire me to gonyinur fighting my battle!

    July 18, 2018 at 1:33 pm

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