I’m a 35 year old Executive Assistant. I married 5 years ago and have two kids (twins), a dog and a cat. As you can see my life is full of movement! Although I have a great life I was a kind of a negative person, always sad and waiting for life to give me more.
Since I was 15 years old, I had problems in my abdominal region. I suffered a lot with chronic pain. First diagnosis: gastritis and some problem they can’t identify in my intestine. Some cystitis appeared and I passed the following 10 years in all kinds of doctors offices without any relief. At the age of 24 years old, a doctor suggested to have a surgery to correct an hiatal hernia. After it, he promised I wouldn’t feel so much pain and I would live better. After the surgery I couldn’t even drink water, I felt I couldn’t swallow and I looked for the doctor since I felt worse. His words: "I wouldn’t wonder that you would appear here again, take the same medicine you used to".
Shocked! I was shocked and feeling alone with my pain. I visited some of the most famous doctors in Brazil but no answers to my prayers. At that point when I got stressed I realized I would have a cystitis flare. I became a bitter person, I didn’t want to have meals out of my home since it was difficult to swallow and sometimes I would need to go to the ladies room 8 times at dinner.
Finally, I found a doctor that accepted to do another surgery, I felt really upset – another surgery could present more problems, but I was already married and my husband encouraged me to try and I did. One week after, my stomach was like new and I thought I would have a better life. But no. Cystitis started to appear more often and there was no doctor to give me the correct treatment. I started to feel pain 24 hours a day and became more and more bitter.
One month after the surgery I got pregnant and I didn’t expect it but it was like a light in my life. Some weeks after I discover that its twins. And it was a hard time. I felt pain in my entire body, the cystitis got worst and I felt pain the entire time. I felt I was not healthy enough to have twins.
After 34 weeks Benjamin and Rachel were born. And they were healthy enough to bring some light to my life.
As they came home I started to feel pain in my arms and my left knee. How could I stand it? All moments of my life have pain associated. I was sad. I was upset. I was angry with God: how could he allow this?
First, the doctors gave me a tendinitis diagnosis. It hurt all the time, sometimes it was hard to carry the babies. I cried a lot, I passed nights trying to understand how could someone that has everything be so upset with so much pain?
The babies' first year was full of stress: they got pneumonia and Benjamin almost passed away. It was hard, very hard to live with the perspective of having one son dead. But time passed and they both got better and better. Although my life had a lot of happiness, I often saw the dark side of things since I felt cystitis pain all time. My arms and knee also hurt a lot. It was hard to have a marital life with my husband.
After trying all kinds of treatment I looked for a Rheumatologist specializing in Fibromyalgia. After some exams he announced my diagnosis: Fibromyalgia. At first, my thoughts were how would I live with a disease that has no healing? I think the doctor realized that it was a difficult moment, he just look at me and said, "you’ve been told Fibromyalgia has no healing: I say to you that you’ll live with it and don’t realize it if you want to and if you follow my advice you’ll have a great life". For the first time in years I have been filled with hope. So I started treatment.
I’d like to share this:
Life is very short, we live for a moment so it depends on you to decide if it will be good or bad.
Thank God or whatever you believe that created the Universe for it being created. If you exist it’s because you’re important.
Look around you, you’ll find people who care about you although sometimes your bad mood may take people far from you.
Live in the moment, anxiety just worsens pain.
Take care of yourself, although you feel pain, don’t leave the personal care aside, if so you’ll be a painful, grumpy person with terrible hair!
Try to find a solution but be honest: some treatments demand a lot of commitment from the patient and sometimes you may not be able to follow all the steps.
And finally don’t abandon your spirituality. I’m not telling you to follow a religion. If you have one and you feel good with it try to get more connected to it. If you don’t have a religion but feel spiritual--- get more connected to it, take time to pray or meditate or whatever connects you to something bigger than yourself.
Juliana de Oliveira Alves Lima is an Executive Assistant, with two kids and a husband. She manages a Baby Planning Company in Brazil. She has lived with chronic pain for 20 years until finding a diagnosis.