Fibro Warrior Ken

This week’s Fibro Warrior is another Guy with Fibro. Ken is from Boston, MA. He has been with his partner for 16 years. He enjoys “shelter” magazines, walking, hiking, baking, and travel, when his pain allows.

Tell us a little about yourself:
I’ve been with my partner, an immunologist at a Boston teaching hospital, for 16 years. We haven’t married, but have had a number of legal documents drawn up to cover just about everything. No children. I don’t think I have the energy, although I have been known as “fairy godmother” to the children of a few friends. (I like to spoil them and then give them back.) I keep telling myself we’ll get a cat or a dog when we move into a house, as I can’t imagine trying to keep a pet in our condominium unit with very little outdoor space.
Between pain, my ADD and fibro fog, finding enjoyment is a never-ending saga. Reading is difficult because of a very short attention span, although I have the terrible habit of subscribing to, or buying, most “shelter” magazines (Architectural Digest, House Beautiful, etc.) in English and French. I often find myself sitting on the couch with three magazines at a time, like a 3-year-old with a cookie in each hand. I do enjoy watching documentaries, home improvement shows, and many types of movies. When I felt better I enjoyed walking/hiking a great deal, although it’s been quite a while since I’ve set off for a trek. Baking, particularly around the holidays, is another activity I enjoy a great deal when the pain allows. Travel is another favorite activity, although we really haven’t traveled – my definition of travel – since I turned 50 in 2008. We went to Paris, one of my favorite cities, so that took the sting out of turning 50. But as anyone who has fibro knows, the disorder has a mind of its own. You never really know if you’ll have the emotional or physical energy to grocery shop, let alone pack and cope with TSA agents.

When were you diagnosed? How old were you at the time?
It was probably 2000. I was 42 and had just begun seeing a rheumatologist. I’d suffered from a number of pain symptoms for years, but was always told it was age-related, I was depressed, or my favorite, “it’s all in your head.”

What lead up to your diagnosis?
My energy levels just weren’t up to par, yet all my labs came back within normal limits. I was beginning to experience different qualities of pain, and in different places than before, and mornings were becoming impossible. I could barely move. My focus and concentration skills had left town. It took a number of years and visits to more specialists than I care to remember. On top of that, I’d had five right knee surgeries. Of course, I was supposed to be the next Baryshnikov, but that didn’t happen. I completed high school early, and at 16 won a full scholarship to the school of a major ballet company. My knees hurt then. In college, I began as a Dance Major, and was finally seen by the football team’s orthopedist. He basically told me to stop dancing or I’d stop walking. I didn’t listen, but that Baryshnikov thing never quite worked out. (See the five knee surgeries and spinal arthritis. Of course, lifting ballerinas is what may have caused some of the arthritis.) I have to believe that things work out for a reason. Had I become that ballet star, it would have been short-lived life and full of pain.

What was your life like at the time you were diagnosed?
I’d been let go form a large, international public relations (PR) firm two years before; I was beginning to take time off for physical therapy, trying to avoid an additional knee surgery (I’d already had two), and the rumor was the company was concerned I was going to become a long term disability liability. Needless to say I had another three surgeries, all on my right knee. I’d been with my partner for two years, was doing some PR consulting to pay the bills, and was rebounding from my father’s suicide the year before.

How did your family initially handle your illness?
I wasn’t in real close contact with my family – for a number of reasons. I grew up with a bi-polar, alcoholic father who lived in chronic pain. My mother became the textbook enabler to try and keep him happy. Home was constant chaos. I have to believe that fibro shows up in folks who suffer some sort of trauma. In fact, I’d be surprised if my father didn’t also have the disorder, having grown up in an even more chaotic environment. My partner was very supportive, but until we had a name for the illness, it was a strain on our relationship, mostly because of the way I was behaving. I was getting passive-aggressive, and not knowing why. It turned out to be that very real human fear when we know something isn’t right with our bodies, but don’t yet have a diagnosis. A name. Anything. That can be debilitating.
[Tweet “There’s a very real human fear when we know something isn’t right with our bodies via @Grace_Under_Ire”]

What do you feel is the most challenging aspect of Fibro?
Learning to listen to my body and to accept the constant exhaustion. To be willing to change plans or reduce expectations at the very last minute, and not become overwhelmed with guilt over how my actions will negatively affect someone else’s plans or efforts. I lost a lot of people I considered friends in the five or so years it took to get a concrete diagnosis. I wasn’t easy to be with. I was living in constant panic mode. Now it’s more chronic fatigue and pain management. I’d also love to be able to focus or concentrate at will and read a good book! And really travel.
[Tweet “Sometimes I get overwhelmed with guilt of how my actions will negatively affect others. via @Grace_Under_ire”]

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Yes. The worst has to be a combination of trochanteric bursitis (in both hips) and arthritis of the spine – from my neck down – and the canal stenosis and bulging discs that accompany that little challenge. It’s often difficult to sleep, or even find a comfortable position to just be still in. Chronic Coccydynia, my coccyx or tailbone, constantly throbs, or feels like I’m a human shish kabob. An Impars Ganglion Block has become one of my favorite procedures; I’m basically injected with yet another steroid in that area. Asthma and many allergies – contact, ingested and airborne. IV contrast puts me into anaphylaxis. I have peripheral neuropathy in both feet, which may be due to small nerve damage, something that’s becoming studied more and more in people with fibromyalgia. Ulnar neuropathy – a lovely electric, burning sensation that runs from my elbows down each arm and to the last two fingers. Raynaud’s, so my circulation is shot; I’m the one in a long-sleeve shirt with the A/C on full blast. Cluster headaches.

Since I stopped working in PR I’ve not had a single migraine, so that’s a positive. That career held more stress for me than I even realized, even though I was very good at what I did; it often involved crisis communications for large organizations. Dupuytrens’ Contracture, these lovely little “cords” that develop in the palms of my hands that can, in severe cases, cause your hands morph into “the claw.” All I know is it’s common to those of Viking heritage. Perhaps it’s payback for my ancestors’ pillaging and plundering. Plus the usual co-morbidities of fibro: IBS, multiple chemical sensitivities, chronic fatigue, and depression. Major depression; in my case it’s genetic, and it can be severe. Oh, and I was recently diagnosed with PTSD. (Probably a combo platter of my upbringing and being raped at 17 while still in ballet school.)  Which makes sense, but it just seems like another acronym to put in my knapsack, which feels heavy enough already.
[Tweet “Another diagnosis is just another acronym to put in my knapsack, which feels heavy enough already. via @Grace_Under_ire”]

What (if anything) have you found/ done that has improved your symptoms?
Meditation – particularly if I can get in “the zone” before pain becomes overwhelming. Very warm showers. Deep tissue massage (this, however, can be cost-prohibitive). Gentle stretching. I also have trigger point injections to help relieve large muscle spasms in my trapezius and lumbar spine. Usually 8 or 9 injections every three to four weeks. Spending quiet time with good friends. Distractions: An afternoon escape for a good latte and maybe real ice cream. And more recently uncovering my family’s history to the 17^th century and then the American Revolution. When body and wallet permit, a trip to the ballet and theatre in New York always tends to perk me up a little.

How open are you with friends & family about your illness & symptoms?
Some of my best friends I’ve known since high school or before, so that’s like before the wheel was invented. They all know I’m “sick.” I try not to complain around them. If things are really bad I’ll usually mention it’s something they understand better, like my arthritis. One good friend was diagnosed with fibro shortly after I was, then arthritis, and then the bomb: MS. The second high school friend to be diagnosed with MS. What can I say to that? When we’re together I try to support her more than think about what I’m going through.

What is the best advice you’ve received regarding Fibromyalgia?
It is what it is; don’t try to over analyze it; and planning and pacing are key to your survival. And learn to shed guilt.
[Tweet “#Spoonie Learn to the shed guilt of your illness. It is what it is. via @Grace_Under_Ire”]

What was the worst advice that you followed?
Aerobic exercise. That’s one of the latest “findings” that’s being touted. Fibromyalgia is not a ‘one size fits all’ disorder. While it may be helpful in theory, if you’ve had five knee surgeries and have a spine-full of arthritis, it’s not the best idea. But you do need to keep moving or the stiffness will cause you to seize up.
[Tweet “Fibromyalgia is not a ‘one size fits all’ disorder. Find what works for you. via @Grace_Under_ire”]

What is your favorite way to cope with your life as a spoonie?
To not take life, nor myself, too seriously. Even on my worst days (and there are some bad ones), you have to remember that there’s always someone else suffering more, and getting by in life with less. It’s constantly readjusting your perspective. A couple of times a month I have the same epiphany, that I truly am disabled, and that knocks the wind out of my sails for a day or two, but then it’s back to life as usual. To live in the moment, even if it’s a bad one; it can’t last forever. Oh, and those shelter magazines. I’m always finding the perfect home and dreaming about that. (I’m still waiting to win the lottery.)
[Tweet “Living with life as a #Spoonie means constantly readjusting your perspective. via @Grace_under_ire”]

What is one thing you’ve learned about yourself since your diagnosis?
That I’m stronger and more obstinate than I ever thought I was. And that everybody needs to be heard. A support group of people with similar conditions can be enormously helpful; I belong to a chronic pain group at a major hospital. We’ve been together awhile, and most times we don’t have to say a word for everyone to know how and what we’re each feeling. Not having to explain yourself over and over is an incredible feeling, a real gift. I look forward to those meetings every week.
[Tweet “#Spoonie A support group can be enormously helpful. via @Grace_Under_ire”]

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Don’t give up. Ever. Do not let a doctor, nurse, or anyone else, tell you how YOU feel. Or refuse to believe that you’re feeling it. And if you find they’re not listening to you, really listening, find another clinician. And if you find that the clinicians that are treating you aren’t showing you the respect you deserve, find a new care team. We have enough on our plates without some specialist belittling our complaints, or worse yet, simply not listening. If you’re still working or in school, you need to set limits for yourself; pacing is critical. You’ll also need to find what activities, sleep patterns and foods work for you, which may be a process of elimination. Oh, and surround yourself with positive people. You don’t need someone competing for your last spoon.
[Tweet “#Surround yourself with positivity, don’t let others take your last spoon. via @Grace_Under_ire”]

Is there anything else you’d like the readers to know?
I don’t want any of this to sound like I’m complaining or feeling sorry for myself. That doesn’t do anyone any favors; it’s absolutely counter-productive. I realize there are so many people who are suffering on a completely different level, without the emotional or financial support that I’m blessed enough to receive. I’ll tell it like it is, but I also use sarcasm as my weapon of choice, and it’s usually the self-deprecating kind. The day I can’t laugh at myself is the day that I’m really in trouble.

If you relate to Ken, be sure to reach out to him. Connect with him on Twitter @Grace_Under_ire a takeoff on a favorite sitcom, “Grace Under Fire.” (with a little sarcasm thrown in). You can also email him at squantum58@yahoo.com