Fibro Warrior – Kerry Mitchell

This week I am interviewing Fibro Warrior and fellow blogger, Kerry Mitchell, from Seattle, WA.

Tell us a little about yourself:
I am married to Warren. We met in 1969. For me, it was love at first sight. I got him to see the light a year later and we’ve been living together ever since. We stopped off in 1976 and got married. We love dogs and have always had one until a few years ago. Now that Warren is retired, we want to travel, so there is no room in our lives for a dog at this time.

I am limited in what I can do, so our traveling is limited. However, we have managed to go to Maui every year since 2011. I don’t get to do a lot once I’m there, but going to the beach works just great for me. I spend a lot of time on the lanai looking over the ocean, painting.

When were you diagnosed? How old were you at the time?
I was in my early 40’s when I became ill. I didn’t know what was happening to me. It started with overwhelming fatigue. I also could not find words. I started having a lot of neurological problems. I had been in Mexico during Christmas, and had foolishly eaten some raw vegetables and got a bad case of diarrhea. I just never recovered from it. I missed most of February from work. I finally left and went on disability on April 1, 1994.

What lead up to your diagnosis?
I saw so many doctors, I lost track. No one had really heard of fibromyalgia/CFS back in the early 90’s. All the doctors thought I was crazy or trying to get drugs for recreational use. I had been in unbearable pain since 1983. No one would listen to me. I was told that it was “impossible” to have the pain I described. I had doctors curse me, throw papers at me and more. The main thing was no one believed me. I was so very, very sick, and no one thought I was. The doctors mostly believed I was crazy and wanted me to see a psychiatrist.

I am the person who diagnosed me. I had worked in medicine doing medical research. So I spent hours and hours researching my symptoms. I found out what was wrong. It took me forever to convince doctors I had CFS/FM.

What was your life like at the time you were diagnosed?
At the time of diagnosis, I was a Risk Manager for a health cooperative. I was a textile artist. My art career was really, finally, starting to take off. I had been in several prestigious shows, and had won awards. I belonged to a group of artists that you could join only by invitation. I was thrilled that after many years of hard work at my art, it was starting to pay off. I was also selling my art. Then bang, it was gone. After several years in bed, I was finally able to start doing digital art. That has saved me.

How did your family initially handle your illness?
Just about 99% of my family and friends walked out of my life while saying screw you, you liar. I had severe neurological deficits during this phase and still have some today. I was not acting like the normal Kerry. Friends of over 20 years, just walked away. Some have wanted back in my life since. However, I am not willing to take the chance of being hurt like that ever again. I am very cautious who I let in my life. It took my husband awhile to respond to my illness. I am sure he was having his own issues about basically watching his wife die. However, now, I will say he is there 150% for me. He has been a saint, literally. He is one special guy.

What do you feel is the most challenging aspect of Fibro?
The brain fog and fatigue. I am still bothered by brain fog and fatigue to this day. But nothing like what I previously experienced.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have Lyme disease. I was finally diagnosed with it in about 2009. A very bright, intelligent doctor thought to take the correct test for Lyme. I could not begin treatment when it was diagnosed as I was too sick to be put on antibiotics. I had to wait for a couple of years and build up my system in order to get treatment. It has made a huge difference. I spent over 18 years in bed. Fifteen of those with no diagnosis.

This December, we went to Maui. While I was there, I focused entirely on just sitting up each day. I know this may sound like not much to some. But after over 15 years of 24/7 in bed, it was huge. I am still struggling with it. But I am able most days to get up, get dressed and go to my studio and work on my digital paintings.

What (if anything) have you found/ done that has improved your symptoms?
The antibiotics have played a huge role in my feeling better. I have taken tons of various herbs and vitamins. The usual ones recommended for FM/CFS and lyme.

Recently, my FM doctor recommended a histamine blocker. It is called Histame and is available at Amazon. It is for a condition in the stomach. I don’t know if I have that, but it has been a huge help in making me less fatigued.

How open are you with friends & family about your illness & symptoms?
Mostly, I keep my mouth shut. I find that few, if any of my family are interested in my health and the issues surrounding it. As to my friends, I have very few. Those that are friends, I am honest with, as most of them also have FM/CFS or lyme and/or understand.

Do you blog about your illness? If so, what inspired you to do so?
Yes I have a blog at http://kerrycmitchell.com. I initially started it because I wanted to let others with my illnesses know that their mental attitude towards their illness could change how they feel. One can look at their glass as half full or half empty. When I finally looked at my life in a more positive way, it made a huge change in how I felt. That is how the blog started. Now it is more about my art.

I am extremely grateful that we have enough money to see us through retirement. I was very blessed to have a disability policy. Of course, they insurance company kicked me off twice and hassled me for many years, but they did pay me.

What is the best advice you’ve received regarding Fibromyalgia?
I have read and researched on my own. I belong to a private web group of people who took a class on learning how to live with FM/CFS. That group and that class changed my life. I have met new friends, I am in constant contact with the latest medical information and other information on these illnesses. A surprising number of people in this group have Lyme.

What was the worst advice that you followed?
Take a large dose of Benicar. It almost killed me, literally. It was advised by a doctor who also had FM/CFS. She should not have been practicing medicine, she was way too sick.

What is your favorite way to cope with your life as a spoonie?
I look at life in a positive way. That is key to my feeling better. I look at all I have and keep an attitude of gratitude.

What is it that inspires you to keep going, despite your illness?
My art. I have always been an artist. I have always done arts and crafts. I was a textile artist before becoming ill. I discovered painting in 2012. I started doing it digitally as I was confined to bed and couldn’t get up to paint.

Now, I choose to continue to paint digitally. I use a high-end program similar to Photoshop, but it is called Painter. It makes marks just like real brushes.

What is one thing you’ve learned about yourself since your diagnosis?
That I’m human. That I have a chronic illness and no one, with the exception of my husband can really understand it unless they also have a chronic illness. In our society, it is perfectly acceptable to get sick and become well, one can even get sick and die. But to get sick, and stay sick, people are way too busy to deal with that. It is up to me to take care of me. No one else is going to do it for me.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Find a good doctor. That is key. You just have to keep going and going and looking and looking.

I would highly recommend getting a Lyme test. I am surprised by the number of people I know with CFS/FM who also find they have Lyme. It is much more prevalent than people think, and is on the rise.

Is there anything else that you would like readers to know?
Find something in your life to be grateful for. Initially, that is almost impossible. Emotionally and spiritually, I dug myself into a hole of anger, frustration and resentment. I had to finally figure a way out of that hole. Once I had some hope, once I realized that I had to help me, things began to change. What you believe in your head is what shows up in your world. What you say from your mouth, becomes real in your life.

Be sure to visit Kerry’s blog, learn more about her, and let her know that you appreciate her sharing her story. You can also find her on Twitter and Instagram @kerrycmitchell. She also has an artist page on Facebook.

If you enjoyed this Fibro Warrior interview, then be to check out the whole series and learn about the other amazing Fibro Warriors that I have interviewed. If you are a Fibro Warrior I’d love to share your story, as well.