Today I’m interviewing Kasey Nadeen of Salt Lake City, Utah. She was diagnosed with Fibromyalgia two years ago (July, 2014) at the age of 34. She’s been married for nine years. She’s just celebrated her fifth year at her job, and she loves to read, watch movies, write poetry, and spend time with her friends and family.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I have always had some sort of inflammation going on and a very sensitive stomach since I was in my early teens, in junior high school. The older I got, the more I complained about some sort of tingling in certain parts of my body. I remember once, I felt something in my calves. Another time, I remember feeling very sensitive in my pelvic area, and thinking that I’m pregnant and that has happened quite a few times too. When I was in my late teen’s-early 20’s, I remember a doctor’s visit with my mom being there with me, asking me if I was ever sexually abused because from what I had been describing, it could be Fibro. I have never been sexually abused and was quite upset when he even suggested that was why I might have Fibro, so I dismissed that theory immediately.
How did your family initially handle your illness?
My parents are divorced so I was with my mom most of the time when I was younger. My mom has always been my biggest supporter when it came to my health. She always knew something was wrong and never once thought that I was “faking” it. She has even said a few times, if she could take it away from me, she would in a heartbeat. My dad never really knew what was going on with me because he wasn’t around enough to see much of my health issues and probably thought that it was part of my development stages of puberty. My husband has seen me go through so many ups and downs and never really knows what to do to help me. I know that there have been times when he’s been frustrated with me for missing work or for having stomach pains or extreme dizziness. I don’t think that he doubted that I was sick, but I just never “looked” sick so he didn’t know what to do to help me.
What do you feel is the most challenging aspect of Fibro?
Having to explain to people why I’m always in pain or why I cancel plans at last minute or why I don’t want to just take a pill so that it will go away. It never goes away no matter what. This is with me for life and that terrifies me because what if it gets worse down the road to the point that I can’t work anymore. What then? That’s the most challenging aspect, my future with Fibro.
Do you have any other co-existing conditions?
I have been in 2 car accidents, about 10 years apart and they left with me with 2 bulging discs and 1 herniated disc in my lower back and osteoarthritis in my hips, shoulders and neck. They have limited my flexibility to be comfortable in certain positions for a long period of time. When the weather changes from warm to cold, that is when it’s the worst, literally from head to toes.
What (if anything) have you found/ done that has improved your symptoms?
Doing my yoga or physical therapy or simple stretches helps get my blood flowing, especially on my bad days. If I don’t move, even for a little bit, I am miserable. Also, epsom salt baths are the best! I practically take a bath almost every day now. For about two months right after my 2nd car accident I could only take baths because I couldn’t stand up for a long time from a concussion or look up to the ceiling to rinse the shampoo and conditioner out of my hair under the shower head. Working with a nutritionist that specializes in autoimmune disorders and thyroid diseases has helped me a lot too. Going to a support group for women with chronic pain and illnesses for over a year has been such a huge help for me as well. We’re a small group around the same age with many different issues and yet, the same emotional, mental and physical pain that we go through on a daily basis. I cherish this group very much.
How open are you with friends & family about your illness & symptoms?
It depends because there are some who have never seen me on a bad day and there are some who have seen me at my absolute worst and they can see how much it takes a toll on me. My dad is now finally starting to see how much I go through, even with my head held high and a sense of humor. He can’t believe that I just don’t give up on myself.
Do you blog about your illness? If so, what inspired you to do so?
I share on Facebook and Twitter. Twitter, believe it or not. I am not against social media but then I saw on Twitter how many people there are out there who struggle just like I do and still joke about it or own it instead of complaining or whining about it or advocate about it because this is a real sickness that affects so many different people and now we have a name, but no cure. I also save pins on Pinterest.com about chronic pain and illnesses because again, I’m not alone and there are so many resources out there that it boggles my mind!
What is the best advice you’ve received regarding Fibromyalgia?
The best advice that I have ever received was actually from my current PA who knows that Fibromyalgia is a real thing. She said to me along the line of, no matter what, keep doing what I’m doing. She wished that she had patients who take care of themselves as I am doing right now. I was blown away when she said that because I’m not exactly the ideal picture of health. I’m 5’9″ and 220 pounds (I’ve recently lost 50 pounds from doing clean eating-thanks to my nutritionist) and I wake up with aches and stiffness and tingling and numbness. But then she went on to tell me that I’m an amazing woman who has so much to live for and a husband who is a great partner for me and who never gives up on other people. She told me to cut myself some slack because I am worth it. Just writing this now is bringing up tears because she was the first PA/doctor who didn’t think I was crazy or making up stuff or just wants attention. She actually sat down and asked me, How am I doing? And I told her the truth, I hurt from the inside out to the point that I sometimes don’t even want to get out of bed and be with my dogs and husband.
What was the worst advice that you followed?
Oh just tough it out. There there. Can’t you take a pill for it, like the one that they advertised on TV?
What is your favorite way to cope with your life as a spoonie?
My dogs and my kindle app on my phone. My dogs keep me warm and my kindle app helps me escape from the pain into fantasy, sci-fi, paranormal, romance, and humor.
What is it that inspires you to keep going, despite your illness?
So many things. My husband. My dogs. My writing. My friends. My parents who are my best friends too. God. And my hero, my grandmother, who is now my guardian angel, may God rest her soul.
What is one thing you’ve learned about yourself since your diagnosis?
Strength doesn’t come from the outside of me like my appearance or my weight or even the people in my life. Strength comes from within. I really am stronger than I think I am and it has nothing to do with being physically strong. It’s all about heart and soul.
[Tweet “Strength doesn’t come from what you look like on the outside. It comes from within. @byrdlady07]
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Trust your gut on what works for YOU, not others. Not every Fibro person go through the same thing. Yes, the symptoms are quite common, but what works for me is not always going to work for you. Do what works for YOU.
Is there anything else you’d like the readers to know?
I was born deaf and have been wearing hearing aids and never really thought of it as a disability because it’s a part of me, but I don’t let it define me. Fibro, on the other hand, it’s still a work in progress. I’ve probably had it for 20 years but now that I have a name for it, it feels more like a “dis”ability than my deafness and I know that I am more than my deafness and I am more than my Fibro. It’s a challenge not to think about my physical limitations of Fibro on a daily basis because I literally feel it all the time, but I am working on just focusing on me and not my disability.