I’m really happy to introduce you to a new Fibro Warrior. Donna Z. Falcone is from Northeast PA, but has recently moved to Southern GA (can’t blame her for trading the cold for the warm, can we?).
She’s married to her best friend, Joe, and has been for nearly 25 years. They have two sons, ages 21 (Tech Support) and 23 (Musician), and one whacky dog, Gruffy, who makes her laugh every day.
She was diagnosed with Fibro in 2007 at the age of 48 and with Lyme disease, Bartonella, Babesia, and Ehrlichia in July of 2008.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I had been seeing a physical therapist for vestibular therapy (to help correct very poor balance). During the exercises I had terrible trouble with my ankle and other joints. The therapist suggested I see an osteo specialist, and he diagnosed me with Fibromyalgia. I had been suspecting Fibro for quite some time, so I didn’t disagree with him. However, I didn’t like the way he took no time to dig a little deeper (I went there for ankle pain and joint issues). If he had, he may have discovered my primary diagnosis.
How did your family initially handle your illness?
My family has been terrific. They help when I need it, and it hasn’t been easy all the time. As my Fibro diagnosis lead me toward discovery of the other infections, they were a tremendous help and support to me. When I lost a lot, so did they, and I have to always keep that in mind and give them space for their own feelings about things.
What do you feel is the most challenging aspect of Fibro?
Today, the most challenging aspect of Fibro is the chronic nature of it. It’s really hard for me to get it into my head what chronic means – forever. I tried really hard to live my life believing this would go away if I did all the right things for the infections, but it keeps coming back. Mind you, its much better than it used to be overall. My worst days now are better than my best days used to be, so that’s wonderful news. During periods of less symptoms and more energy I would feel so encouraged – like I beat it, you know? BUT, when everything flared that feeling of victory would go away and depression would come around knocking on (or knocking down) my door. It was a vicious and deflating cycle and I had to shift my perspective or resign myself to living that way forever. No thank you.
Things are easier now. My current perspective is more like this: breaks in symptoms are blessed times to be treasured, but I try not to expect too much from them. I take my breaks one day at a time and accept that the law of impermanence applies to them, too. This too shall pass. When I say that, it doesn’t mean I go around full of fear or gloom, waiting for the other shoe to drop so to speak. However, when the infections and fibromyalgia flare and I have to increase treatments or start new ones, I don’t feel I’ve been robbed, or that the rug has been yanked out from under me. That’s just the way this goes. Everyone has some challenge to deal with, right? This is mine.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
As I mentioned, I have Tick Borne Diseases – four of them; Lyme, Ehrlichia, Babesia, and Bartonella. When my trigger points flare or my brain fog, neuropathy, and other symptoms increase, it usually happens to coincide with a relapse or flare in one or more of the infections. When my doctor can successfully identify and treat it, the other symptoms improve dramatically.
What (if anything) have you found/ done that has improved your symptoms?
Treating the infections leads to improvement in pain levels, brain fog, and memory problems. They worsen every time treatment is restarted, but then get better.
Walking, when the weather is warm enough, really helps me a lot. We have a little park that is pretty flat and, if we walk a particular path, it’s one mile. My husband and I probably did that 4 or 5 times a week last spring, summer, and fall. I hurt at first, but we stopped and rested a lot. One day I did the whole mile without even thinking of resting and it was a huge victory to me!
How open are you with friends & family about your illness & symptoms?
I share on a need to know basis, mostly, although I will always share openly with anyone who asks. I have no secrets about it, but I don’t like to talk about it much anymore – over focusing on it seems to make it too big in my own mind, and that, of course, translates into gloomy self-absorption. I do talk a LOT about Lyme prevention, if I see people doing things that increase their risks for tick exposure.
Do you blog about your illness? If so, what inspired you to do so?
I used to blog about my illness on a regular basis at The Brighter Side Blog.
My inspiration came from a need to be proactive in my own life. I found a lot of really helpful tools along the way and I thought maybe other people would be interested in seeing what they were. I created a website called The Brighter Side: Living with Lyme, with inspirations and resources. That site inspired me to launch the blog, where I wrote regularly for years. Both of these can be accessed from my website, www.DonnaZFalcone.com.
Now I write at my new site, DonnaZFalcone.com. I do write about Lyme etc there, but it’s not the main event.
What is the best advice you’ve received regarding Fibromyalgia?
Honestly, the best advice I ever received was to attend a local lecture at a university. Dr. Richard Horowitz and advocate Pat Smith would speak about Lyme disease. The person who told me about it thought a lot of my symptoms could be explained by Lyme disease. My doctors had never even heard of Lyme – there is a lot of misinformation about TBDs, and the tests used are very unreliable. She explained that many doctors were not fully informed about the emerging research on Lyme and the other infections, and believed that it was easy to diagnose, easy to cure. It’s neither. So, she handed me a flyer and I went. What I learned there probably saved my life.
This same person later suggested a type of bodywork called Rosen Method Bodywork. It helped me a LOT. I learned so much about where my body holds tension, which always leads to pain, and I developed a deep appreciation for the mind/body connection. My Rosen practitioner helped me learn to notice clenched muscles and tension, and how to relax around them. My pain decreased as a result. When I was really, really sick Rosen Method Bodywork was the only thing that provided relief that lasted more than a few hours. The skills I learned will last a lifetime.
What was the worst advice that you followed?
Someone once rolled their eyes at a treatment mentioned I was on and said I should switch to an all-natural form, so I asked my doctor to switch me over, and he did. Turns out my body liked the first one better and an allergic reaction lead to a complete halt in ALL of my treatments until we could figure out what was causing the reaction. It took weeks to pinpoint the allergy and longer to get me safely back on all of my treatments. I stopped listening to others on medical advice and I even stated on my blog that comments about protocols and treatments would not be posted. I would feel just awful if someone read something on my blog that lead them to a bad decision, and so, I like to leave that to the professionals. My doctors have been wonderful and while my input is important to my treatment, I defer to their preferences. They know more than I do, and that is a huge relief. My life got a lot easier when I could finally trust my doctors to know more than I did about my condition because, for a long time, none did.
I learned to share less about what I am doing because people will always try to help by offering suggestions and, oddly, this raises my anxiety. The medical community is at constant war regarding Lyme diagnosis and treatment, so it’s not hard for someone’s well-meaning advice (or reflexive eye-roll) to knock me off my footing. So, I share the details with very few. It’s just easier for me that way. I’m blessed to have doctors whom I trust.
What is your favorite way to cope with your life as a spoonie?
I treat each day as it comes, and even more specifically, each hour as it comes! There are times when I think I can’t possibly do a thing (ie; meet friends out) but then whoosh – my energy turns around and I can. So I do. Sometimes the opposite is true in that I feel ready to go and do something when BAM I run into an invisible wall and that’s it. I have to cancel. I think of it this way – anything can happen and if one of my friends had to cancel on me, I would understand. So, I offer myself the same grace. I sometimes use the spoon theory to help others understand what it’s like to suddenly open the drawer and find no spoons left (yeah, that’s kind of like living with teenagers)! J
What is it that inspires you to keep going, despite your illness?
Stubborn Faith, I guess, and not necessarily religious faith, although that can be central for many. I look around and see a definite pattern: everyone who is living well (healthy or not) is sort of wrapped up in a blanket of stubborn faith – the kind of faith that makes them trust in life, and trust their gut. They know they need help, so they seek and accept help. They advocate for themselves, and they scrutinize their doctors and their treatments along the way to make sure everything still fits.
My mother faces crippling arthritis among other painful problems, but she still goes to art classes and she still cooks, welcomes friends, and lives with joy. My father has had two knee replacements, open heart surgery, and he can’t hear much at all, but he doesn’t just sit on the sidelines – he cares for his home, he cooks with my mom, he works the garden and does everything he can to make their home, and their lives, beautiful. Several friends have faced cancer and have all taken rough treatment, endured painful procedures, and lived their lives to the fullest during and after their treatments. And me, I have fibromyalgia and I have infections that relapse pretty regularly. The people I know who are doing well might still be taking treatment for Lyme etc, live that way, too. This is what works for me:
- Keeping my mind focused on living my life. Doing what I have to do to take care of these problems, and trying to keep it in the background whenever possible, lets me live it more fully.
- Staying mindful of the steady flow of my spiritual self keeps me going.
- Remembering that my body is only one part of the wellness equation keeps me balanced. I actually believe it’s the smallest part.
What is one thing you’ve learned about yourself since your diagnosis?
True confessions? I used to be a drama junkie. Drama makes everything worse, unless it’s in the form of General Hospital. Then it’s just ridiculous fun.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
I would advise people to make sure they don’t have an underlying tick borne infection which is triggering the fibromyalgia or adding to its symptoms, and I wouldn’t want them to rely on their regular doctor to understand this unless their regular doctor understands the Lyme controversies, diagnosis, and treatment. It’s complicated, but important. This can have a huge impact on treatment paths for each person. They don’t call Lyme disease the great imitator for nothing. The best way to legitimately rule TBDs out is with a doctor well informed in both fibro and tick borne diseases. Most often, this is through consulting with an LLMD (Lyme Literate Medical Doctor), but there are other doctors who are beginning to understand the connections. For me, the right doctors have made all the difference.
Is there anything else you’d like the readers to know?
Grieving losses imposed by illness is necessary work, and we will revisit our grief from time to time, but it’s important to look at what perks up our ears and tickles our fancy now. What are we good at? What are we curious about? What is plain old fun and what brings us joy? What is worthy of our limited time and resources? It’s quite possible that a forgotten and much loved dream will resurface, and now might be the perfect time to give it some space to thrive.
If you enjoy these interviews and would like to share your own story, I’d love to have you do so. Just email me at firstname.lastname@example.org for more info.