How I learned to embrace my Fibromyalgia!
Sounds weird, right? Yes, I have learned to embrace my fibromyalgia since my official diagnosis nine years ago, after having symptoms for at least five years prior.
When I was first diagnosed, after ruling out a plethora of other serious illnesses, with similar symptoms, I heard the words that changed my life “you have Fibromyalgia”. It was the first time I had heard that word. I just stared in shock, and my neurologist at the time did not explain what it was, what to expect, or what all the symptoms were. He only said “it’s a lifelong chronic pain illness”. I had so many questions, and he was in no mood to answer any of them. I was left dumbfounded, speechless, and frightened. My mom was waiting for me outside, and I sat next to her and said “He said I have Fibromyalgia, and I don't know what that is, and he didn't want to explain.” I reassured her and said “we will research it, and find answers, don't worry”. I think a lot of what I said was to calm me, also. But, I knew this was going to completely change my life, and hers.
I started making appointments with my primary and what I thought were specialists who dealt with Fibro. My primary did not believe in Fibromyalgia, and many other specialists did not either. I had a difficult time finding some answers and help for all my questions. I researched and asked everyone, hoping to find answers. I joined a support group, and left crying from the horrible stories of despair I was hearing. This is not for me, I cannot come here for community and answers, and walk away feeling hopeless. I asked friends and family. Most did not believe in it or me, some of them had it, but, it was about the same kind of responses.
I decided I was going to find new doctors who believed in syndrome that was getting worse, and hopefully had some kind of treatment. Most of the medical community only offered two or three different medicines, which i did not tolerate. I was left with Advil as an option. I started losing friends because I couldn't drive far, walk too far, or enjoy myself without writhing in pain. Family called constantly complaining about why I didn't visit. I explained that the drive was too far, and it was harder for me to say that I couldn't do it anymore, then it was for them.
I kept researching and reading all I could get my hands on. I found what worked for me: heating pads, ice, meditation, quiet time, me time, trigger point injections, stretching, etc. These were self-care treatments, and self-care was also new to me. I am a caregiver, and I have since learned that taking care of myself is equally, if not, more important than taking care of my loved ones.
I found an online event for Fibromyalgia, it was called the Butterfly Bowl, an organization called The Fibromyalgia Care of Society of America was hosting nearby. I was so excited and hopeful to meet members of the community. I immediately felt welcomed by everyone. I was surrounded by such positive words, smiles, and encouraging words. I met the Founder, Milly Velez, we spoke for about five or ten minutes, and I knew I wanted to be a part of this amazing organization in any way I could. I liked their FB page, read some really helpful posts, I then volunteered to be an Admin and post positive Fibromyalgia facts for the growing community. I then joined their Caterpillar Walk in NYC. I was thrilled to see so many family and friends supporting the Fibro community. I walked with them that day, and the year after. Then, Milly started one in Newark, NJ and I was the first one to volunteer. I couldn't walk or run the 5K, but I was part of a community that was reaching and helping hundreds of people. I helped with some outreach, posting flyers, and helping everyone sign in on the big day, handing out medals, and photographing.
There are moments I always remember in my life, when I see something and it changes my perspective. Milly’s son, Justin, was wearing a t-shirt that said “my mom has fibromyalgia, but it doesn't have her ''. It was exactly what I needed to see and feel. The day was a success and I have been volunteering for the 5k Run/Walk every year.
As the years progressed, I developed many comorbidities that are associated with Fibromyalgia. I started not to panic as much as the past years, and did the research, and contacted specialists and friends who were supportive and helpful. I dealt with it my way, what made sense to me, and my body & mind. I stopped comparing myself to others, especially those who can still work, or run or lead active lives. We are all different. I remained positive and had a “this too shall pass” attitude. And did everything I could to take the focus off of the pain, and back on my life. Whether it was photography, being in nature, sitting by the water, writing, painting, going on rides with mom.
The pandemic was difficult for all of us, and I began to isolate myself, not only in my apartment, but from people, and my pain got worse, my flares were more frequent, and I sought peace and calm. We all know that anxiety and depression are part of the Fibro cycle also. So, I had to seek help & listen to what my body was telling me. I started meditation, I started taking online classes, sought a cognitive behavioral therapist, and I looked for ways to calm my body down. I had to reset and refocus.
One of my goals was to find a new medical team that would help me. This would include Neurologist, Rheumatologist, Gastroenterologist, and Primary. The pain specialists gave up on me, only offering Epidurals, physical therapy, and more medicines that did not work. I started developing my own daily routine that allowed me to feel better, and see that there are natural modalities that can ease my symptoms.
I have found some amazing doctors in the past year, and they work closely with me and each other. They listen, most of the time. I became severely ill with IBS, another of Fibro’s friends, and I lost 35 lbs, pain, constipation, etc for over a year. Many tests, many pills, nothing helped. I decided to read, research, attend online classes, and ask questions. I pretty much set up my own meal plans everyday, and balance what I eat. I am happy to say my symptoms are about 85% better.
Mom and I went through some hardships in Fall of 2021, where our apartment flooded with the storm Ida. We lost both bedrooms, and were confined to only the living room, kitchen and bathroom. The owner, after living there for 54 years, did not repair the damage. We were living in mold, mildew and a completely unacceptable environment. My mom was 93 at the time. I contacted everyone I knew. We felt so alone in this ordeal. It was five months before we were finally able to move out to a new apartment, on the same floor as my aunt. Those months were very dark for me, i couldn't see a way out, my flares and pain were insane. Between, the disinfecting, the packing, throwing out, etc.
Finally, our prayers were answered, and we live in a peaceful place, surrounded by wonderful people. Sun shines through the window all day, elevator, laundry, parking spot. We couldn't ask for anything more. The moment I walked through the door I felt peace. I started making a vision board and trying to manifest positive things in our lives, and things started falling into place, slowly. Sometimes you have to know what you don't want, to know what you do want. I just want a simple and peaceful life.
I started making new friends, organizing our apartment so we are both comfortable, making healthy meals, taking rides along the waterfront, or sitting by the water. Soaking in the sun every morning by the window while I meditate. I wasn't as stiff or in pain in the mornings anymore. It didn't go away, but it's tolerable. I look forward to new adventures close by, to new classes, new nature walks, etc.
I felt I needed something more with the Fibro community. A bigger connection. In February, I was blessed to become part of the Center of Excellence with the Fibromyalgia Care society of America. Through this program, I have connected with people I now consider family. It takes a lot for me to feel safe & comfortable around people, and at first I observed, and now I share, and participate in every class. There is an overwhelming sense of “me too” “i can relate” “i’m glad that helps you”, etc. It has changed my life for the better. It has given me modalities that I can achieve and feel better. It’s about living, music, cooking, community, conversations, nature, meditation, art, a care manager, wellness, and so much more.
I look forward to using all these modalities and so much more in the future. I started a routine schedule on a simple excel spreadsheet. I include stretching, walking, creating, meditation, meal plans, journaling, pain level monitoring to identify triggers, me time, support, contacting family & friends, etc. I do not feel alone, I feel empowered, I feel I can conquer my bad days with all the tools at my reach.
I am grateful that each day I learn something that helps me live, be peaceful, enjoy life, and not drown in the pain, anxiety and depression. Everyday is not the same, and I pace myself, listen to my body, and reset, refocus and am eternally grateful for all my blessings.