Fibro Warrior of the Week (#19)
FWOTW: Wendy Burnett
Location: Atlanta, Georgia United States
Mantra: My philosophy is basically that as long as I woke up on this side of the dirt today things could always be worse, and today is a chance to find some way to make them better.
Wendy Burnett is our 19th Fibro Warrior of the Week. In addition to working in retail, Wendy writes a great deal (see contact info) plus likes to make her own non-toxic personal care and cleaning products. She enjoys photography plus finding new uses for products via recycling. However, she hasn’t quite mastered the use of keys yet…—FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Wendy: I was born in SE Ohio, near the West Virginia border, but I’ve spent most of my life in the south. My mom moved me to Ft. Lauderdale, FL when I was 5; and then when I was 16 we moved to South Carolina. Two years later, we wound up in a suburb of Atlanta, and I’ve lived in the area since 1977.
I don’t have contact with most of my blood relatives, but I’m surrounded by my chosen family, and my in-laws are great, so I definitely don’t feel alone. I also have the best friends in the world, all over the world, that I’ve met through my website and social media activities.
It would take a book, maybe an entire library, to list all my interests. The most relevant ones, though, are complementary and alternative medicine (with a focus on herbal medicine and essential oils,) medical research in areas related to mental health and fibromyalgia, health activism, reading, writing, social media, politics, organic foods, diet and nutrition (especially as those relate to supporting and improving health,) natural cleaning, and creating my own non-toxic personal care and cleaning products. I also enjoy finding ways of repurposing and reusing things that would normally get thrown away, as well as gardening and photography. (Did you know there are dozens of ways to use eggshells? You can use them in gardening to improve the soil or prevent slugs; in cleaning as a mild abrasive; or even sterilize them, grind them very fine, and use them as a mineral supplement. The minerals in eggshells are much more bio-available than those in most over-the-counter supplements.)
FD: When did you first suspect that something wasn’t right? What happened?
Wendy: I actually got diagnosed when I went to the doctor for something else, so I never realized anything was wrong until after my diagnosis. I’d decided to go back to school, and needed a required MMR vaccine because I didn’t have my records. I had a severe reaction, with the joints in my hands swelling and hurting so badly that I couldn’t use them, and pain and swelling in other joints as well.
When I went to the doctor, she did a blood test for rheumatoid factor, which was extremely high, and referred me to a rheumatologist, who diagnosed the fibro before I even realized there was anything going on.
FD: When were you diagnosed with Fibromyalgia?
Wendy: My diagnosis was 18 years ago, in 1995. Of course, there are many other illnesses that can accompany Fibromyalgia, and I’ve got several of them, so there has been a new diagnosis added on a fairly regular basis.
FD: When you received your diagnosis, how did it affect you?
Wendy: It actually ended my marriage. My ex refused to accept that I was really sick, and became even more emotionally abusive as well as forcing me to do things I was no longer physically able to do. After several years of counseling with a wonderful therapist, I’d come to realize I deserved better, so as soon as I could support myself, I left.
FD: Since then, how has your outlook on life changed?
Wendy: It’s been an evolution. At first, when there were so many things I couldn’t do, and I hadn’t figured out how to manage my symptoms or do what I wanted, I was very negative. I felt like the fibro had destroyed my life, and was extremely resentful. I hated my body, and what it had “done to me,” and was frequently suicidally depressed.
As I learned ways to manage, that began to change. Now, I still fall into that black hole occasionally, but it never lasts long because I’m determined not to let the Fibro beat me. There is always a way to make things better, and I’m pretty good at finding it.
FD: How does Fibro affect your day to day life?
Wendy: Although Fibro does limit how I do things and how much I can do at once, I don’t allow it to stop me from doing what I need to.
That being said, it does require a lot of “managing,” and has literally turned my life into something totally unrecognizable. I spend a lot of time researching and experimenting with new ways to cope, not just with the symptoms, but also with new ways to do things that I can’t do the way I did them when I was healthy.
I guess you could say that it’s taken over my life, because a lot of my day-to-day activities revolve around the fibromyalgia, but I think it’s in positive way. The focus isn’t on how bad the pain is, or how exhausted I am, but on ways I can cope and help others cope.
FD: What can’t you do anymore because of Fibro?
Wendy: There actually isn’t a whole lot that I can’t do at all because of the Fibromyalgia. I’ve found work-arounds for most things; like using a rolling cart instead of carrying things, or breaking housework into short tasks instead of trying to do everything at once.
The only thing I can think of that I’ve had to give up completely is nature photography, because wearing a 35mm SLR around my neck causes extreme pain. (By the time you drag it out of the bag and get set up, the opportunity has disappeared.)
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Wendy:I was raised in a family that punished me for telling anyone what went on in our home, so I could never have imagined blogging about such a personal subject. I never would have imagined that I would end up writing for money, either, but that’s happened too.
Fibromyalgia changes so much about your life, and although many of those changes are unpleasant (exhaustion, pain, discrimination;) others can be very good (increased confidence, creativity, and strength.)
FD: What has been your experience with seeking medical treatment for Fibro?
Wendy: I was really lucky. I was diagnosed with Fibro when I was referred to a rheumatologist because my rheumatoid factor had spiked, and she diagnosed the Fibro before I actually realized there was something bad going on.
My experience with other doctors has been horrible, however. Like just about everyone else with Fibro, I’ve been told I was faking, that I’m a “pill-seeking addict” (for telling a doctor that if he was going to take me off the ibuprofen and acetaminophen he was going to have to give me something else to control my pain,) and that I just want to get disability so I can sit home on my a$$ and watch TV instead of working. That one actually doesn’t bother me, since I still work (retail) and have no intention of going on disability.
FD: How has Fibro affected your relationships, friends, family, partners?
Wendy: At first, it made many of my relationships very difficult, but over the years it’s actually made them much stronger. I don’t have the time or energy to deal with criticism or accusations from my friends or family; so I’ve pretty much eliminated the relationships with people who tried to push me into things I couldn’t do, accused me of faking, or were negative in other ways.
After a divorce, cutting ties with most of my family, and letting the friendships that weren’t working for me die, I have a strong support network. My current husband is very understanding, and my close friends are supportive. Any new acquaintance who is critical or unsupportive is ruthlessly eliminated from my circle, or kept at enough of a distance that their negativity has minimal effect.
FD: What is the biggest challenge you face living with Fibro?
Wendy: My biggest challenge is actually my current job. I work retail, part time, and there’s never enough money to cover the bills AND eat a decent diet, (let alone buy the herbs and supplements I need to control my symptoms.) In addition, the very physical nature of retail work frequently causes high pain levels and exhaustion. For several years I was supplementing with freelance writing jobs, but we’ve moved and I now spend anywhere from 9 to 13 hours a day out of the house to get paid for 5 to 8 hours.
Since my company isn’t letting me transfer to a store closer to my home, I’m having to change my priorities. Instead of making my top priority showing up when I’m supposed to, I’ve decided that it’s time to start calling out if I have a writing deadline or have the opportunity to get a freelance job.
FD: What inspires you to keep on fighting?
Wendy: I wonder about that sometimes. Partly it’s because I’m just a stubborn b!tch and refuse to let the Fibro win, and partly it’s because I have people that depend on me.
FD: What advice do you have for other people who are living with Fibro?
Wendy: Try everything you can afford. If it works, don’t let anyone convince you that you’re “wrong,” it couldn’t help because there aren’t any studies that prove it’s helpful or explain HOW it works. After all, people used ginger to treat nausea for centuries before the first study was done that proved it works better than Dramamine for motion sickness . . .
If it works for you, use it; if it doesn’t, don’t waste your money (and that includes medications.) Don’t let anyone pressure you into using a treatment that’s not working for you, or stopping one that is, even your doctor. Only you can make the decision about whether the side effects of a med are worth the benefits. An addendum to that is that just because something didn’t work for you doesn’t mean that the person who said it was great for them is lying. Every body is different, and it may have been working on a “hidden” problem that you don’t have.
FD: Do you have a funny Fibro story you can share?
Wendy: Oh, heavens. After 18 years, I’ve got tons of them . . . I think the best one is the night, about 6 months after my divorce, that a 15 minute errand turned into a two hour Fibrofog-fueled comedy.
I had a scholarship application I’d forgotten to mail that had to be postmarked by midnight. Since it happened to be April 15th, many of the post offices in my town were open, so I decided to try to make the deadline. I arrived at the closest one at about 11:50, only to find out that it was one of the closed ones, so I got back in the car to try to make the branch that was open.
Before I could pull out, a mail carrier arrived to pick up anything that had been left there, and I jumped out of the car with my application, rushing over to give it to him before he left. When I tried to get back into my car, I discovered that in my rush, I’d forgotten to turn it off and take the key, AND automatically locked it when I got out. OOOPS! Thank you Fibrofog . . .
If I hadn’t carried my cellphone in a case clipped on my pocket instead of in my purse, I’d have been totally screwed, since my purse was sitting in the passenger seat . . .
Things were still pretty bad though. Here it is midnight, miles from anywhere, with the only spare key on my ex’s keyring 25 miles away and no money for a locksmith. (And he goes to bed at 9 because he has to be up at 5 for work.) Lovely, I have to call the ex and wake him up in the middle of the night to come rescue me.
After about 10 minutes of ranting about how stupid it is to lock the keys in the car, he finally agrees to bring me the spare key. In the middle of the night, to somewhere he’s never been, with no cell phone so he can call if there’s a problem with the directions. Even worse, he’s too stubborn to come the easy way, down the interstate, get off at the exit, turn left and drive til you find it . . . He wants surface streets, which take twice as long, and dozens of turns. (He only got lost 3 times. LOL)
After an hour of pacing, another bout of listening to him gripe about being woken up in the middle of the night to save me from my own stupidity, and a stop for gas, I finally got home around 2 am. (With the spare key he had insisted on giving me so he wouldn’t have to worry about getting another call.)
I giggled about his reaction for days after that, and it still makes me laugh every time I think about it. Sometimes a Fibrofog disaster can provide years of amusement . . . (After multiple other incidents of locking the keys in the car, I finally learned to always carry a spare in the pocket of my jeans, just in case.)
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