Mildred Velez of Newark, New Jersey is a Fibro Warrior and the founder of the Fibromyalgia Care Society of America and the Caterpillar Walk.She was diagnosed in 2007 at the age of 36. She says that when she was diagnosed she told her doctor that she felt like a 36 year old living in the body of a 100 year old. I think we can all relate.Tell us a little about yourself:
I am Married. We lived together for over 17 years and made it official a little over a year ago. We are a blended family with 4 beautiful children ages 23, 20, 19 and 16. We own two dogs, Nena and Paris, who we refer to us our children. I am currently employed and run the operations department of a nationally recognized youth shelter in New York City. I enjoy helping others, hence why I dedicated my career to social services. On my spare time I enjoy long walks in the park, camping, meditation, baseball and making the world a better place.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I started waking up to burning pain in my torso, nausea, constant headaches, memory issues and severe back pain. I went into see my primary care doctor who did a full “work up”. I also started doing my own research on the internet. As the pain intensified, my mornings became more difficult. I remember the day I explained to my Doctor that I felt like a 35 year old living in the body of a 100 year old. He was scribbling notes and stopped to ask me if I ever heard of Fibromyalgia. I explained to him that I had been conducting research on my own and that the research kept pointing me in that direction. He then stood up, walked over to the examining table, put one hand on my shoulder and told me “Ms. Ramos you have Fibromyalgia”. I still get emotional when I think back to that day.
How did your family initially handle your illness?
In the beginning we did not speak much about it. I found it difficult to explain something I knew very little about. Seems weird to not be able to explain what I was experiencing. The degree of pain, fatigue, and cognitive impairment can vary day to day, not to mention the whole host of symptoms and/or co-existing illnesses than can come with a diagnosis of fibromyalgia. As I found it challenging to perform “simple tasks”, I began asking for help and explaining why I could no longer handle these on my own. My family is and continues to be very supportive, although at times they still need to be reminded that I need their help in order to minimize the flares and manage pain.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have hypothyroidism. I believe this is why the cognitive impairment can be more debilitating for me at times. Brain fog is a symptom of hypothyroidism and Fibro fog is a symptom of Fibro. For me it is a double whammy if my TSH is not controlled and I am flaring from the Fibromyalgia.
What (if anything) have you found/ done that has improved your symptoms?
It was a complete overhaul for me:
- Speaking openly with my doctor and taking a patient-centered approach to managing my health.
- Changing my diet-No processed foods and limiting red meat
- Incorporating organic products- Sugar, milk and eggs
- Holistic approaches-Meditation, gentle yoga, and massages to help manage stress and muscle pain.
- Asking for help and learning to say no- This was difficult and changed some prior relationships.
How open are you with friends & family about your illness & symptoms?
I am extremely open with everyone about my illness not so much about my symptoms. I do not like pity parties and very often feel that the conversation can turn to this when detailing the laundry list of symptoms to people that are not familiar with life as a spoonie. While I appreciate their support, I don’t want anyone feeling sorry for me or offering unsolicited advice. When needing support, I very often turn to my friends that have fibromyalgia. They understand that the pain is not something you just push through or is part of the aging process, they know the fatigue is very different than being tired and that the fog is not solely caused by stress. They know that some days can be better than others and that at times that can change within minutes without any advance notice.
Do you blog about your illness? If so, what inspired you to do so?
I tried blogging for a while and found it extremely helpful to share what I was feeling with my community. However, I stopped blogging as I took on organizing a committee and creating the 1st walk in NYC for people living with Fibromyalgia -Caterpillar Walk. During this time, I realized that some crucial supportive services were needed in our community. The three key areas that I kept hearing were: informed and caring doctors, help with housework and/or filing for disability, and groups that focused on sharing best practices and empowering our community. Since then, I officially launched the Fibromyalgia Care Society of America and expect to announce the 1st Center of Excellence for people living with Fibromyalgia in NYC in 2016. It will serve as the pilot model for others across the country.
What is the best advice you’ve received about Fibromyalgia?
The best advice given to me came from my sister-in-law who is a Registered Nurse living with Multiple Sclerosis. She told me early on to begin a daily journal and document everything from what I eat to how I feel on a daily basis. This helped me immensely in identifying triggers.
What was the worst advice that you followed?
To visit a doctor every time I had a new symptom. There was a time that I was on 8-9 prescription medications and was getting worse not better.
What is your favorite way to cope with your life as a spoonie?
It would definitely have to be my monthly massages. They help with mind, body and soul. Please keep in mind that you have to find a masseuse that is trained in massaging people with fibromyalgia.
What is it that inspires you to keep going, despite your illness?
All of you! Although, it might sound a bit cliché, it is extremely genuine. Many days when I am not feeling at my best, I go to social network and see the many faces of Fibro enjoying life despite this illness and I am reminded of better days.
What is one thing you’ve learned about yourself since your diagnosis?
I am going to have to quote Whitney Houston and say “I didn’t know my own Strength”.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro?
Begin your pain/symptom journal today and take it with you to every MD appointment.
Is there anything else you’d like the readers to know?
I am committed to bringing a better quality of life for all 10+million of us. To find out more about the Fibromyalgia Care Society of America and to receive updates as we roll out supportive services and walks in your area:
Visit www.fibro.org
Follow FibroCares on Twitter.
Related Posts:
- Fibro Warrior Interview with Suzanne of FibroMomBlog
- Fibro Warrior Interview: Ali Hemsley
- Fibro Warrior: Dana Arcuri
- Fibro Warrior: Janet Komanchuk
I hope you enjoyed Mildred’s interview. If so, be sure to reach out and connect with her. We can all use more positive Fibro Friends. If you’d like to share your own Fibro Warrior story please contact me.
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