Fibro Warrior of the Week (#46)
Location: San Antonio, Texas, USA
Mantra: I only get one life, and I will not let Fibromyalgia take the joy from living it. ~Morgan Freeman (says it best).
As a vocalist, singing technique trainer, and co-owner of Best of Both Worlds Vocal Productions, busy Fibro Warriro #46 Sonya Florie remains very focused on her family while making the most of each day. Also, she JUST GOT MARRIED! Big congratulations, Sonya!
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Sonya: My name is Sonya Florie. I was recently married on December 21, 2013. My previous name was Sonya Ochoa. I was born in San Antonio, Texas, and still live here. My husband’s name is Bill (William) Florie. I now have three boys: Josh Milan, Kaisar Yamin, and Billy Florie (step-son) and finally have a daughter: Danielle Florie (step-daughter). I have wonderful parents, Robert Ochoa & Martha Cortes-Smith and my sister , Yvette Armani, is an amazing sister and friend.
I co-own a business called “Best of Both Worlds Vocal Productions” with Alisa Claridy who is my bestie. I am a professional vocalist and train people in singing technique. That is my main interest. I also perform with “The Powerhouse Divas” and “SAVAE”.
FD: When did you first suspect that something wasn’t right? What happened?
Sonya: Well, I have always been very familiar with fatigue and aches and pains, but one day it became very apparent that something was wrong. I was actively working out seven days a week and one day, I had my first huge flare. I remember distinctly saying to my ex-husband that I was going to see a doctor and would not surprised if they diagnosed me with something terminal….that’s how bad I felt. Everything, absolutely everything, hurt to the extreme. It knocked me down so hard.
FD: When were you diagnosed with Fibromyalgia?
Sonya: I was diagnosed in 2004….three times. The last one was the right diagnosis. he first thing that the doctors did was order blood work. I requested them to do an ANA titer test because my oldest son had been diagnosed with Ankylosis Spondylitis. So I was very aware that autoimmune conditions could run in my family. I wasn’t sure if maybe I had an issue, too. They did the test and my blood work came back as Systemic Lupus. hey ran the test again to make sure and it came back again as the same. It took me nine months after that to finally get in with my rheumatologist, Dr. Jon Russell. He is the head of research for Fibromyalgia Research at the University Health Science Center in San Antonio. I was VERY lucky to have gotten him. I went on for nine months thinking that this is what I had until I saw him. He ran the tests again and told me that I had Fibromyalgia and not Systemic Lupus. It turned out I have a rare antibody that when looked at under the scope is not clear. Half of my antibody cell was reading as a Peripheral(rim) & the other half was Speckled. He then explained that the labs, when they are unclear, will assign one a number and the other a number and then they are added together to give a false positive for lupus. Both numbers were normal, but when added together, came out to a positive titer count. So be very careful with making sure your blood tests are accurate.
FD: When you received your diagnosis, how did it affect you?
Sonya: Well, since I had gone through the first false positive diagnosis with Lupus, I was actually relieved. I’m not quite sure that would’ve been my reaction if that didn’t happen. I would say once it settled in, I did feel like a part of me had died. I knew things would never be the same. Things would be different. I am a person who likes to be educated and knowledgeable so the first thing I did was start reading about it. That way I would know what things were to be expected and what things were separate from Fibromyalgia. It can be so confusing and so overwhelming with so many symptoms. It felt like practically everything could be Fibromyalgia related. I’m sure we all have had the thought that people think or have been told we are “complainers, whiners, hypochondriacs,” etc. It’s not a nice feeling when you look “ok”, but on the inside you aren’t.
FD: Since then, how has your outlook on life changed?
Sonya: I have learned that I have to pace myself according to the condition and listen to my body. I cannot worry about what others are thinking about me…especially on days when I don’t feel good. I have learned about how to make my condition livable. Eating better foods, drink a lot of water, limit stress, learn to say “no”, get plenty of rest, EXERCISE (that does help), and take your medicine. I take lyrica. I know a lot of people can’t tolerate it, but it has been a lifesaver for me.
FD: How does Fibro affect your day-to-day life?
Sonya: Mornings can be tough, but I take my medicine and give my body a chance to get moving. I am fortunate that I do not have to go into work early, so I generally can take the time I need. I empathize with those who have to wake up early and go to work because I know that would be a whole different ballgame. I try to stay active, even when I am hurting. I take my meds and then just tell myself it’s not going to beat me today. I always tell myself that it could be so much worse. I have learned how Fibro affects me and have tailored my life accordingly. I can be a terrible “patient” so sometimes I have to really discipline myself to take the rest I need.
FD: What can’t you do anymore because of Fibro?
Sonya: I cannot work as physically hard as others can. I have to pace myself which is very frustrating. Every once in a while I will over do it and then I will pay for it the next day. Exercising is definitely different. I cannot do dancing or anything over moderate aerobic exercise either. I used to be able to do that. Now, I have to pace myself. I did Zumba once and then felt like I had the flu for several days afterwards.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Sonya: Being more compassionate with myself. I would push myself before and tell myself that I was just being lazy. Now I give myself a break…I understand that I am just not capable of doing things that I would like to do….I just can’t and that is OK! I have a very good reason for being incapable. Those were just the cards I was dealt, but I am still breathing and can move through the pain. I’ve also realized that I can get through just about anything. Being in pain everyday can’t help but make you stronger in spirit.
FD: : What has been your experience with seeking medical treatment for Fibro?
Sonya: I was very lucky. When I sought help, I was blessed to have been assigned this particular rheumatologist. He was the best I could’ve gotten for Fibromyalgia because he did research for the condition and is considered a pioneer in this field. I know many who have not been this lucky. Afterwards, my primary care physicians were under the same group so they were familiar with him and his treatments. I was given great care by him and was taking Lyrica before it was FDA approved because he was on the board for testing this medication through trials. I was given suggestions for Cymbalta or Lyrica and we decided Lyrica was the best to try first.
FD: How has Fibro affected your relationships, friends, family, partners?
Sonya: My oldest son, Josh, was diagnosed with Ankylosis Spondylitis at age seven and Fibromyalgia at age nine. My whole family had already been very familiar with this condition. When I was diagnosed, they weren’t surprised but worried. My family is the best. Very supportive and caring. My business partner, Alisa, has been very instrumental in allowing our business to continue even if I have a flare. She will take care of my clients sometimes and also is a great massager. She will come and work out a flare so that I can try to work through it and get on with the day. My husband is the most supportive partner I have ever had. He takes care of me at all costs and tries to learn and understand the condition. I am soooo lucky. Having positive people around you helps you to push forward and realize that even with pain, we have a lot to live for even though part of us feels like it has died.
FD: What is the biggest challenge you face living with Fibro?
Sonya: Pain. Being reminded of the pain the second you open your eyes. I think that probably rings true for everyone. Trying not to get down when you have a bad flare. I know there are times when I have been hurting so bad that the tears came down with the thought in my head of, “I just want to remember what it feels like to feel normal for one day.” Just keeping the positivity through the pain. That can be hard sometimes when it’s every moment of the day when you are awake.
FD: What inspires you to keep on fighting?
Sonya: Every person that is important to me is why I fight. I don’t want to miss any part of their lives or mine because of Fibro. You only have one life to live even if the burden you have to carry is Fibro. Knowing that I am needed just as much as I need others. Every Fibro person I know that carries on with such courage inspires me and I hope to be an inspiration
FD: What advice do you have for other people who are living with Fibro?
Sonya Find a good doctor that understands Fibro well. There are a lot of rheumatologists that don’t really work with Fibro so their treatment is not always the best. Find a doctor with a good bedside manner. That is very important for us to be with someone kind and willing to listen and just say, “I understand and I will to try to help”. Be nice to yourself. Be positive. Get massages if you can…they help a lot. Laugh as much as possible and avoid stress. Drink water and eat well. EXERCISE…don’t over do it, but do DO IT! If you can get past the first three days of pain (with medication) , it does get easier and is great for your muscles. Find a medication that works for you. I only take Lyrica and have taken it since 2004. It builds in your system…makes you a little loopy at first, but it worked for me and has been a lifesaver….especially during flares.
FD: Do you have a funny Fibro story you can share?
Sonya: Everyday could be a Fibro funny…only I’m the only one who experiences them when they happen. Every Fibro sufferer would be able to relate: dropping things that you had already been holding for awhile…poof….they just fall to the floor, randomly running into the wall, forgetting peoples names that you have known forever, losing your balance for no apparent reason, completely missing a conversation because your brain decided to just go on pause, etc. I could go on for months. LOL. It comes with the territory. Just smile through it
Check out Sonya’s website: .bestofbothworldsvocaltraining
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