This week I’m interviewing one of my readers, Leidamarie Tirado-Lee (Leida), from Chicago, IL. She was diagnosed in May of 2013, when she was 26 years old. She is inspiring me by continuing to work to complete her doctorate degree despite her illness.
Tell us a little about yourself:
I recently turned 28 years old and am close to finishing my doctoral thesis in Biological Sciences. I have been married for 5 years to my wonderful husband Philip. Currently, we do not have any children of the human or pet variety. In my spare time I am a nerd extraordinaire. I love to read comic books and play games (video and tabletop). When feeling well, I also love to train at my local archery range.
What lead up to your diagnosis?
It all began in December 2008. I started having intense localized pain in my pelvis/hip/lower back. Over time I started having more generalized aches and pain. In particular, I was having a lot of pins & needles sensations, or feeling like warm water was running down my muscles. I started developing migraines and severe fatigue. I was in and out of doctors pretty much every week. I had probably every test imaginable and was on a first name basis with the Radiology department at the hospital. All the tests came back normal so most doctors just said it was the stress of grad school until 2013 when a rheumatologist diagnosed me with Fibromyalgia.
What was your life like?
My symptoms started while my husband and I were in our first year of graduate school and planning our wedding. Grad school is, of course, stressful and requires long hours of work. I actually had to switch out of my first thesis lab because of tensions my medical issues caused with my boss. I almost quit grad school altogether because it seemed like having a chronic illness and completing grad school did not go hand in hand. However, I found an advisor who was willing to work with my condition and I’m slowly but surely finishing my doctoral work.
How did your family initially handle your illness?
Initially the illness caused tension between my husband and me because I would try to hide how bad things really were, which lead me to be depressed. However, once I was open and honest about how I was feeling physically and mentally he was able to understand me better. He has been a truly wonderful support system. He always encourages me to advocate for myself and to never give up finding the answers. My parents were always available for me to talk to about how things were going even if they really didn’t understand.
What do you feel is the most challenging aspect of Fibro?
For me the most challenging aspects have been the fatigue and Fibro fog. I imagine having these symptoms is probably the closest approximation to what it must feel like to be a zombie. There are days when I feel like I am literally losing my mind. I used to have such a good memory and ability to focus. Now I can barely remember the conversation I just had 5 seconds ago. I keep losing things. Getting work done seems 100x harder because I have to keep taking breaks since I can’t focus for long periods of time anymore. Also, I hate that I am always tired and can never seem to feel fully rested. If I don’t nap, I’m tired. If I do nap, I’m still tired. Sleep for 4 hours, wake up tired. Sleep for 12 hours, still wake up tired. Of course, the doctor is always saying, “A good night’s sleep is one of the most important things to help your Fibromyalgia.” Believe me if I knew how to sleep well and wake up refreshed I would. How frustrating!
Do you have any other co-existing conditions?
I’ve been an asthma sufferer since I was born but that hasn’t really impacted my Fibro much, that I have noticed. I also have Hashimoto’s thyroiditis (auto-immune hypothyroidism) which is apparently a common overlapping condition in many Fibromyalgia sufferers. Many of the symptoms are overlapping so I have to get my thyroid levels checked every few months and adjust my thyroid replacement hormone appropriately. The cold intolerance associated with hypothyroidism enhances my myofacial pain and adds a hint of achy joints making winter is my biggest enemy.
What (if anything) have you found/ done that has improved your symptoms?
I’ve tried just about everything: physical therapy, yoga therapy, massage therapy, Chinese medicine, acupuncture, chiropractors, etc. For my neuropathic pain the only thing that really seems to help keep it under control at the moment is a low dose of Cymbalta. A combination of yoga and massage seem to be the best at helping my muscles be happy.
How open are you with friends & family about your illness & symptoms?
At first not at all, I thought I needed to be strong and handle this on my own. I worried that if I kept talking about it those around me would just get bored/ annoyed with me. However, now I am very open with them to try to educate them about Fibromyalgia, and to get them to understand me better.
Do you blog about your illness? If so, what inspired you to do so?
So far I have only written one blog post about my Fibromyalgia. Ultimately, I decided to do it because I realized that I was missing out on an opportunity to educate those around me about my condition and shed more light on the issue of invisible illnesses. I definitely plan on writing more posts in the future since my initial post was very well received.
Update: Shortly after I interviewed Leida she did start a blog about her health journey! You can check it out at A Girl in Search of Her Spoons.
What is the best advice you’ve received regarding Fibromyalgia?
The only person that really knows what is going on with you is you so you need to advocate for yourself and make the doctors listen.
What was the worst advice that you followed?
For the last year and a half I have really gotten into archery. Sometimes it can be hard during a flare up, but adjustments could easily be made to make things easier for me. However, at one point it was suggested I should stop because it was preventing me from getting better. I think that was crap. Archery genuinely makes me happy and cutting it out of my life took away one of the things that truly made me happy which is not what you want to do.
What is your favorite way to cope with your life as a spoonie?
Comic books have been one of my biggest escapes. They help me escape into a totally different world away from all my worries. Archery has also been another big help. For one it has given me a big community of friends and it is also a good stress relief. A few years into my struggle I got a phoenix tattoo to symbolize healing and overcoming adversity. It is a constant reminder of how much I have endured and overcome.
What is one thing you’ve learned about yourself since your diagnosis?
I am a lot tougher than I thought. Many people have said to me that they are so impressed with my decision to continue in the pursuit of my Ph.D. while struggling with my medical condition. Admittedly, it has been a very difficult road with lots of bumps but I have always pushed through them.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Don’t suffer through it alone. Bottling it all up and trying to stay strong will backfire in a very bad way. Talk to friends and family or find a support group where you can get all those emotions off your chest.
Now that you’ve gotten to know Leida, be sure to check out her blogs, The Compound Nerd, where she shares her love of comics, movies, archery, beer, and more, and A Girl in Search of Her Spoons (her new Fibro blog). You should also be sure to follow her on Twitter. Send her an email and let her know that you enjoyed this interview.