Fibro Warrior of the Week (#37)
Location: Peoria, IL, USA
Mantra: Never give up.
Our 37th Fibro Warrior of the Week is owned by two cats who permit her to run an antique business with her husband. Her name is Julie Nichols, and she’s a seasoned warrior who began her fight back when the condition was just becoming known. Besides dealing in antiques, Julie likes to push herself to work hard in all aspects of life, as well as play hard. She also enjoys 100 milligram light bulbs… extra wattage!
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Julie: I was born right here in the same city in central Illinois that I live in now, right in the middle of corn country. I am married to a wonderful, supportive man who helps me run my antique business. I sell antiques online and at an antique mall about an hour and a half away from our home. We are owned by two twenty-one pound tabby cats, brothers Micah and Tory, who graciously allow us to live here with them.
FD: When did you first suspect that something wasn’t right? What happened?
Julie: I had already been diagnosed with two autoimmune diseases in my 20’s; endometriosis and Graves hyperthyroidism. I had been treated for the endometriosis and was undergoing treatment for the Graves (radioactive iodine treatment) when I began having terrible spasms in my back and shoulders. I had gone on a long trip with my boyfriend (who later became my husband)…he was a long distance truck driver and while on the trip, I came down with a extremely bad case of the flu. When we returned from the trip three weeks later, I fell into bed and the pain escalated. I was terrified.
FD: When were you diagnosed with Fibromyalgia?
Julie: This was back in the early 1980s, long before Fibromyalgia was well-known or understood. It took two years of continually seeking help before I was finally diagnosed. In the beginning, they ran all the usual tests, and nothing came up positive. I got more and more depressed because of the terrible pain and also because no one knew what was wrong. When they could not figure me out, they told me I was making it up—all in my head—that I was lying, trying to get attention, and sent me to a psych ward and medicated me to the gills just to shut me up about my unrelenting pain. Eventually, when I ended up in the hospital again complaining of the extreme body wide pain, a doctor walked into my room and said, “I think I know what you have. It’s called Fibromyalgia.” That was in 1982.
FD: When you received your diagnosis, how did it affect you?
Julie: I was so relieved. I finally had been validated. I knew all along that I was not crazy, I knew something was wrong with me. It was a victory. But then I learned that there was really no cure for this strange illness, and that the prognosis looked pretty bleak. So my relief was short-lived. I struggled to learn how to live with all-over pain, every day. It was hard. We tried lots of different treatments: marcaine injections, different medications, chiropractic. Nothing helped. Again, this was back in the early 80’s…they were just learning about Fibromyalgia and searching for treatments. There wasn’t much out there yet.
FD: Since then, how has your outlook on life changed?
Julie: Oh, I’ve been up and down emotionally and physically for thirty-plus years. It’s been a roller coaster ride. I’ve fought depression and anger. I’ve dealt with terrible flare-ups, then just the usual “black & blue” everyday pain, and sometimes the pain eases up. That is part of the problem. I can’t make plans because I never know from one day to the next how I will feel.
FD: How does Fibro affect your day-to-day life?
Julie I tend to push myself too hard. I get angry at the pain and want to beat it. You’d think after living with it for all these years, I would have learned that you can’t outrun pain. It will catch you and it will slam you down. I am still learning the extreme importance of listening to your body’s pain signals and OBEYING the pain. If you don’t respect your body and the pain, you will end up in big trouble. It’s a hard thing to find the perfect balance of activity and rest. I’m still trying to find that balance. I am a Type A personality and it’s very hard for me to take time out for rest and relaxation. But it’s something I must do to keep the pain under control.
FD: What can’t you do anymore because of Fibro?
Julie: I can’t be as spontaneous as I used to be. We used to just head out on road trips and go places, do things. Now I can’t make plans ahead of time because if I do, and I am having a bad day that day, I’ll have to cancel. Also can’t do things early in the day until my pain meds have kicked in. I cannot function until the meds are in my system and then I can start my day.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Julie: Gulping so many pills and supplements every day. The amount is staggering.
FD: : What has been your experience with seeking medical treatment for Fibro?
Julie: It’s been pretty dismal for the most part. I’ve had some real jerks for doctors, and I’ve had some pretty great docs as well, but they just could not offer me much in the way of effective treatment. When you span the course of 30 years, there have been so many docs, physical therapists, rheumatologists, etc….. it’s all a big blur after all that time, really. I did have one very special rheumy…he was like a grandfather figure to me. I saw him as a patient for twenty-five years, and he was wonderful. But he retired from seeing patients years ago. Now I just have a general practitioner that takes care of me. I take pain meds around the clock now, since I’ve developed osteoarthritis on top of the Fibro….the pain is crazy.
FD: How has Fibro affected your relationships, friends, family, partners?
Julie: I don’t socialize much at all except for internet friends. I don’t know what I would do without the internet. I’ve met some wonderful, dear friends who have similar health issues. The internet has literally saved my sanity and my life. I remember a time before the internet came along…I was so isolated and alone, I felt suicidal many times. Now I have relationships with people all over the world, and I no longer feel alone.
My husband is my biggest supporter. He is compassionate, kind and supportive. He knew me before this all hit the fan and he understands what this illness has done to me. He’s experienced it all right by my side. He’s the best thing that ever happened to me.
FD: What is the biggest challenge you face living with Fibro?
Julie: Keeping my antique business running. It’s very challenging for me. I sell online as well as at an antique mall. I’ve done it for seventeen years. I do it because it’s my passion and it’s given me a reason to get out of bed every day. But now that I am aging (I’m fifty-eight), things are getting much harder. My husband helps me, but he is getting his own aches and pains now. We are thinking about giving up the booth at the antique mall and just selling online. But the online business is hard too because of the packing and shipping. And photographing the items is difficult as well. I should really just quit, but I feel like if I do quit, I will fall into a depression because this is my life and has been for so many years. I’m still fighting to keep going.
FD: What inspires you to keep on fighting?
Julie: It’s just who I am. I don’t give up. I don’t give in. I don’t want the pain to win. I’m stubborn and tenacious. I’ve inherited my dad’s bullheadedness. If there is a way for me to do what I want to do on any given day, I will do it. Even if it means excess pain. I get myself in trouble a lot with that attitude, but I have made a life for myself in spite of it all. And that makes me proud of myself. But as the years go by, things get harder. So I’m going to have to pay attention to that fact and adjust my sails.
FD: What advice do you have for other people who are living with Fibro?
Julie Well….I would say if you are wise, you will learn to listen to your body, pace yourself, don’t push too hard and try to manage your pain as much as possible. But at the same time, don’t allow the pain to rob you of having the best life you can manage to make for yourself. I tend to go overboard on a regular basis and that’s something that I definitely do NOT recommend, LOL! But to have the satisfaction of doing what you love, sometimes it’s worth it “once in awhile” to push a little bit beyond your comfort zone in order to do things that are important to you. Don’t let the pain make you so afraid that you never exceed that comfort zone.
FD: Do you have a funny Fibro story you can share?
Julie: I remember years ago after I’d been put on quite a few meds— not just for Fibro, but for some other health problems as well—one night I noticed that a light bulb had burned out in one of our lamps. I guess I had medication on the brain that night because when hubby hollered out, “What wattage is the bulb?” I hollered out, “100 milligrams!”
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