For those of us who live with fibromyalgia, we are painfully aware of it everyday. But this year May 12 has been designated to educate others. The theme this year is “Your Voice Matters” to call attention to the fact that everyone has a say in education, awareness, and making changes to help those who suffer from chronic pain.
What it Is
As I described in an earlier post, extreme fatigue, sleeping issues, and that “I-just-got-run-over-by-a-Mack-truck” feeling are the most prevalent symptoms for me. Other common symptoms of fibromyalgia include:
Constant dull ache on both sides of the body and above and below the waist
Sounds great, huh? Lucky me, as I have both! Diagnosed with Fibromyalgia in 2000 and with Osteoporosis in 2015. I know and live with chronic pain, but try my best not to let it get me down or slow me down. And then there are all of the other weird ailments that get lumped in with this condition, for lack of any other explanation. There’s a very good list by Sophie at Fibro Diaries that lists 100 different symptoms. I have probably had most of them at one point.
So in the spirit of helping with awareness, here are some other websites and bloggers I like, that write about life with fibromyalgia:
Dr. Murphree’s site has good information on the condition; listen to one of his conference calls
Read my earlier post of how I cope – healthy lifestyle choices are the best methods for me and I feel it when I make bad eating choices or have high stress levels
My Voice Matters
Hopefully I have provided *a little* awareness on this “invisible” condition. So the next time I seem a little grumpy or am moving slowly, it’s probably because when I crawled out of bed and kicked fibromyalgia in the butt that morning, it kicked back.
Do you have any good resources for fibromyaglia or coping with chronic pain to share?
Last week I wrote about my week leading up to “Garland Gives” day with my leadership class Leadership Garland 35. To quote the program’s Executive Director, Jan Furtick, “I feel like a proud mom today. With about 140 volunteers led by Class 35 working 8 projects throughout the community, I am blown away! Lots of good things being done and lots of friendships being strengthened. GARLAND GIVES. One day. Many hands. Side by side.”
As a wrap up to the week, I just wanted to post a few pics from the day. Although I didn’t do much physical labor yesterday, I was part of the team doing the overall planning for months leading up to the event. There was a lot of mental exhaustion and anguish during that time. Oftentimes people don’t realize what goes on behind the scenes when they only see the end product, which is hopefully a well-oiled machine, but I can tell you it was a lot of emails, phone calls, planning meetings, conference calls, shopping for supplies, and planning of every last detail. Given everyone’s different strengths and weaknesses, some project leads were more detail oriented and others had more of a “wing it” style. But in the end, everything worked out. The weather cooperated. The mulch disappeared. And at the end of the day yesterday, I was as exhausted as if I were moving all of that mulch!
Prize for the fastest project to finish goes to Salvation Army where the ladies moved playground mulch at record speed. An equipment problem prevented them from power washing the parking lot, so a group will return to finish another day.
Prize for the most fun goes to Good Samaritans where there was plenty of food to eat, a DJ, some dancing, a very questionable “magic show,” and a Ford filled with canned food from a local dealership. They rebuilt the food pantry shelves inside the building and refreshed the picnic area outside the building.
Prestige Ford delivered over 1600 cans of food.
Sprucing up the picnic area
Every project should have their own DJ!
Prize for the best yard decoration goes to Pawsibilities. They refreshed the grounds for the dogs and the volunteers.
Enjoying their work
Prize for slow and steady wins the race goes to Landmark Society. They were the last ones to finish, but had the tedious inside task of indexing and transcribing photo albums and scrap books. Not a lot of pictures taken because, as their project lead Marty commented, “There’s not a lot of scintillating work going on here.” Although I did hear they had quite a bit of fun with the stories about rising buildings and youth running off to San Francisco in the 60s, from the scrapbooks of Garland’s history.
Prize for best use of Police and Fire personnel goes to Hope Clinic where those guys built a beautiful prayer garden area. Be still, my project manager heart!
I love it when a plan comes together!
Prize for the best disappearing act for making 31 cubic yards of mulch disappear faster than anyone expected goes to Jonathan’s Place, where they did arts and crafts with the kids, planted flowers, collected flip-flops for summer camp, and distributed mulch to several playground areas.
That’s a lot of mulch!
Embrace. Empower. Encourage.
Prize for the best swag bag goes to New Beginning Center where they helped people trying to re-enter the workforce write resumes and practice their interview skills, helped them pick out a new interview outfit, and provided them with a portfolio, a thumb drive, and make-up bags full of goodies. Unfortunately, no pictures were taken due to the nature of the clients.
And finally, the prize for the best workout before the workout goes to Get to Know Garland where a Camp Gladiator trainer warmed the participants up before they were set loose on a scavenger hunt around downtown Garland. The participants all got some swag in the end, as well as prizes such as a Chromebook and fitness trackers.
One Day. Many hands. Side by side. We had over 140 volunteers work on 8 projects for 8 hours on one day, making an impact on the lives of others. There were countless hours spent in the months leading up to this day. There were our share of missteps, differing opinions, and mistakes along the way (Lessons Learned), but nothing stopped us from achieving our end goal of giving back to our community. I am proud of my classmates and the work that was accomplished, and hope everyone that had a hand is proud as well. I am a proud member of Leadership Garland Class 35, we are “The BEST Class!“.
I attended the Women in Water luncheon last week at Texas Water, where Ft. Worth Mayor Betsy Price was the keynote speaker. She made two comments that stuck with me: “You have to give back to the community where you live” and “Being connected to the community helped shape my career” since that was ten days before “Garland Gives.” The “Garland Gives” day of community service demonstrates the central role of Garland’s leaders in building community vitality at every level. To read about the projects Leadership Garland Class 35 (#TheBESTClass) selected, visit the Garland Gives page.
We started planning for this day in November, 2015. Five months, various planning meetings and conference calls later, it is HERE! My intention was to blog for the past five months about this journey, but that didn’t happen. But I do intend to blog this week about our experiences and update the timeline along the way. Cheers!
Friday, April 22 – The three “Project Overall Directors” (AKA the Tri-PODs – Rockin’ Robert, Persistent Patricia, and Can-Do Cynthia) have a conference call (we like to call them “POD”-casts) to discuss possible rubber chickens. Right now we are facing the possibility of rain during most of next week and through the weekend, and not having enough volunteers to help move mulch at Jonathan’s Place. We have ordered the equivalent of 500 bags of mulch. The phrase “That’s a lot of mulch” is repeated no less than 10 times during the conversation. We are all slightly worried. That’s a lot of mulch!
Weather continues to be worrisome, as I receive an email from the Office of Emergency Management about the forecast for the week. #fingerscrossed #prayforsun I am now wondering: Will they deliver that much mulch in stormy weather? I text one of the other PODs so they can worry along with me….
Monday, April 25 (Updated at 9:23PM) – I submitted revised permit (yay me!) and then came across an old Dilbert cartoon that reminded me of this week. With the little skull representing our project day, and all of those risk factors (“rubber chickens”) pointing at a us like rain, too much mulch, not enough volunteers or wheel barrows, T-shirt orders, rain, headcount to order breakfast, rain. Doom and Gloom, I say! Yes, the thought of moving wet mulch in the rain is bringing out the nervous nelly in me. Plans are made to buy tarps to try to keep it dry upon delivery.
No blame will be placed here. Lessons will be learned. We succeed or fail as a TEAM and we choose not to fail. Weather is a factor beyond our control. We can choose how to respond. We decide to proceed as planned with breakfast as scheduled. A final Go/No-Go Decision will be made at 8:00 AM by each project manager on project day.
My day is spent at work, shooting off reminder emails to project leads, and trying to herd cats. I had two simple requests. Approximately 30 emails and 12 hours later, I have my answers. This day has worn me out. I feel my fibromyalgia may be trying to rear its ugly head. I do not have time for this right now. Get me through the next 10 days and then I will collapse.
Tuesday, April 26 – Relatively light day. The nightly conference call mainly consists of discussing how much breakfast to buy and the weather and possible bad weather plans. More doom and gloom. On the bright side, instead of a fibro-flare (or maybe in addition to) I feel like I am coming down with something. Please, not now. I am speaking tomorrow at a regional user group day. Our project day is Saturday. And our Austin trip is next week. One week and then I will collapse….
Wednesday, April 27 – I check in with my two project teams (New Beginning Center and Good Samaritans) to see if they need anything. These two teams are ROCK STARS I tell you. They are busy with prep work and have begun executing their plans. It is great to work with teams that are so well organized and have great attitudes. Rain or Shine, we are doing this! With a little humor and grace sprinkled in!
Sam is ready, rain or shine!
Michelle is getting the signs ready…
Thursday, April 28 – √Breakfast ordered. √Permit and DJ for Good Samaritans confirmed. Volunteers, including some of the Youth Leadership Garland team, have been busy emptying the food pantry into a POD so shelving rebuild can happen on Friday. √Mulch delivery at Salvation Army. [NOTE: Jonathan’s Place will have 3x this much mulch. So when we say, “That’s a lot of mulch!” we mean it. Yikes!]
10 cubic yards of mulch….more to come…
Sam is ready for anything!
√9PM conference call wrapped up and so far no rubber chickens. √Email reminders sent. √Time to rest…I was under the effects of antihistamines all day. Tomorrow will be busier. No rest for the weary!
Friday, April 29 – T-minus 24 hours! I wake up and set my alarm for tomorrow for 4:45AM, so I can get there to set up for breakfast. I receive more project emails. I send more project emails. I am still feeling the effects of the antihistamine I took yesterday morning. I am debating whether I give myself permission to take another day off from working out. Maybe if I work out the drugged effect will go away… I decide to suck it up.
On the schedule for today is √buying flip-flops for the kids at Jonathan’s Place, √dropping off professional clothing at New Beginning Center’s resale shop, √checking in at Salvation Army to get water donations dropped off and check on things for breakfast, √picking up canned food for Good Samaritan’s and √dropping those off, √printing signs and more details, √9 PM conference call. While I am out during the day, I monitor the progress over at Good Samaritan’s, which is the biggest project of the weekend. It has been a week-long effort and things are coming along nicely.
I come home and collapse. I work on signs and goodie bags for each project manager. They have removed rain from tomorrow’s forecast, so we will only be dealing with wet mulch to move and mud to till and plant in at the outdoor projects. “Yay!” to not working in the rain! It’s time to get some rest, because tomorrow is…
PROJECT DAY! – Less than 5 hours sleep and out of the house by 6:10AM to get breakfast set up. We had a great turn out, a few words from our Mayor and City Manager, and then it’s “off to the races”. Before I could get breakfast cleaned up, our first rubber chicken of the day. And off I go to Home Depot to try to get a new hose for a power washer. Overall the day was a success, all projects met their goals, finished early, and no blood was shed. There was even some dancing going on over at one of the projects. I will post the end products soon. Now, I rest….
Come back to see how the week unfolds, and tell me about the “rubber chickens” you have encountered this week.
“If you want to reach your goals…become intentional about your personal growth.” ~ Jim Rohn
Months before I watched Shonda Rhimes’ TED Talk on her year of saying “Yes,” I made my own decision to commit to my personal growth and development, and say “Yes” to me. For years I had wanted to go back to school and get my MBA, but with kids of my own to get through college, I didn’t see it happening anytime soon. College tuition is not what it was when I went to college back in the 80s. So last year when I had an opportunity to apply for a 9-month leadership program sponsored by a local Chamber of Commerce, I jumped at the chance. And little did I know at the first class I would literally be jumping….
The program starts with a two-day retreat where we get to know a little bit about each other…and ourselves, as we are challenged with team-building exercises like the Spider Web and ropes course. First thing at breakfast that morning, I was asked to stand up so the executive director could point out the T-shirt I was wearing. It was one from work with one of our mottoes, “Better together.” And as the program progressed, we have learned how much more of an impact we can make…together.
“If you want to go fast, go alone. If you want to go far, go together.” John Maxwell
One of the exercises was a simple game of catch in a circle of 35 people, which progressively introduces complications and distractions, such as tossing a rubber chicken instead of a tennis ball. The rubber chicken is supposed to simulate how in life we need to learn to deal with the unexpected things that come up. The retreat helped push me outside of my comfort zone to try new things. Throughout this experience, I have made friends, honed my leadership and teamwork skills, and discovered what I was capable of…sometimes in the most unusual ways.
When I finally got the nerve to start this blog, my plan was to blog about the class and community service project along the way. But my plans became slightly derailed with life’s little bumps in the road. I could easily be writing Part 2 of “When Life Happens” after the rubber chickens in my life the last few weeks, but I prefer to look on the bright side of things and focus on what lies ahead in the coming weeks.
“Life is best lived looking forward and looking up.” Richard Branson
What Lies Ahead
Leadership is about getting people to work together for towards a common goal. Our class wraps up with a trip to our State Capitol in May, but days before that we come together for a day of service called Garland Gives where we do projects for local non-profit agencies. Through the planning process we have learned how to work with non-profits to determine realistic and achievable projects we can accomplish in a day; we have learned to work together, push and help each other, step in and step up! In one week we will execute the months of planning.
We have several outdoor projects planned for next Saturday and the threat of rain in the long-range forecast. While I am excited to see how it all comes together, I am hoping that the rain doesn’t become our major “rubber chicken.” So stay tuned for the project recap from Leadership Garland Class 35 – The BEST Class! – and hearing about the impact we are able to make in our community.
“Leadership is about making others better as a result of your presence and making sure that impact last in your absence.” Sheryl Sandberg
Have you done something to make an impact in your community?
Much like a tornado that touches down and wreaks havoc, Fibromyalgia can get triggered by a single event and then linger for awhile.
John Lennon wrote “Life is what happens while you’re busy making other plans.” I have always liked that quote, probably because I am guilty of it at times – too much planning and not enough living. Easier said than done I guess.
It’s been over a month since my last entry where I talked about my Fibromyalgia. I truly hadn’t had a bad flare in many, many months and was feeling wonderful. So I wrote about it. And then few days later I had a physical therapy session left me looking like someone had beat me with a bag of marbles. Trigger flare. I finally got out of that flare just in time for a two week vacation at the holidays. I had planned on spending some of my time brainstorming and planning this blog thing out (not sure I can technically refer to this as a “blog” yet), but then life once again happened.
A little background… I am a technology manager for a local municipality on a daily basis. Within the City there is an Office of Emergency Management. They are professional worriers, planning for the worst (and hoping for the best). There are two of them, so if when situations arise, they pull in predetermined resources across the City to fill roles in a traditional incident command structure. Enter me. I am part of this “Disaster Response Team.”
So, even longer story short, we were experiencing unseasonably warm weather for Texas at Christmas. The day after was a different story. Thunderstorms, tornado sirens, and then a call from work. During bad weather that couldn’t be good. News of a tornado. We didn’t know it at the time, but an EF-4 tornado touched down in the southern part of the town. I made my way to work, and started handling Logistics, which means helping the “first responders” get resources they need to do their job.
For two weeks I worked long hours with few days off, in support of these operations. I was handling it remarkably well I thought – long hours, little sleep – and then I got New Year’s Day off, and the adrenaline wore off. My fibromyalgia flared again with a vengeance. So now, one month later, I still feel like someone beat my body with a bag of marbles and am struggling to come out of this vicious cycle.
Much like a tornado that touches down and wreaks havoc, Fibromyalgia can get triggered by a single event and then linger for awhile. “Long term recovery” is what we are calling the next phase for our city and citizens, and for me that’s what Fibromyalgia is. I may feel fine for long stretches and then something can trigger it, and I am down again. I try not to let my condition slow me down. I get up each day with a positive attitude (it could be worse), look for inspiration, and keep pushing and planning to break the cycle.
Having seen first-hand the destructive force of Mother Nature, the resiliency of those affected, and the compassion of a very large community of people, I really have a new perspective about “when life happens”.
A little more about me today. If you are familiar with the symptoms of fibromyalgia, you might have heard the term “fibro-fog” describing those periods where you can’t think right, and sometimes suffer memory loss or have difficulty concentrating. It is a very real thing for us fibro-mates. I have experienced this feeling more times than I care to admit, and to this day my memory is not as good as it used to be. I was diagnosed with fibromyalgia in 2000, and have probably have had it since I was a teen.
I have long considered myself a “highly functioning” fibromyalgia sufferer because no matter how crappy I felt, I have always tried to push through. I rarely take sick days so if I do, you know it’s bad. There have been plenty of “mack truck mornings” in the last 15 years, but THANKFULLY those days are fewer and fewer for me.
I still have flares occasionally, but they are not as bad or as long lasting as they once were. After years of various medications and trial and error, I believe I have found what works best for me. Disclaimer: I am not a doctor, nor do I play one on TV. I have not received any sort of compensation from any of the people/sites I mention later on. I have just done lots of research and been to my fair share of doctors. But I am a firm believer in a more natural approach as I seem to have severe reactions to many medications I am prescribed. I believe in letting the body heal itself – this is what works for me. These are my opinions.
A few weeks ago I remembered a time when I was 16 that we thought I had mononucleosis. I was suffering from extreme fatigue and had lost a lot of weight. My mother took me to the doctor where they ran tests for mono, strep, etc., and treated me with ampicillin for some infection I cannot recall. At the time I was a vegetarian too, and I can remember my mother telling me that if the doctor thought that was why I was sick, I was going to have to eat meat again! I ended up quitting my part-time job for several months due to the fatigue. I think this illness at 16 must have been my trigger for fibromyalgia, or the first bout I had with it.
About 8 years ago I heard about Dr. Murphree from a friend whose wife also has FMS. I looked him up and signed up for his email newsletter. I listened to a few of his teleconferences and started researching vitamins and minerals that I needed. I ditched all of the medications and started taking various supplements morning and night. This seemed to help, but I was starting to experience more frequent digestive issues and had a series of health issues from 2011-2012. In 2012, one of Dr. Murphree’s newsletters led me to JJ Virgin and her book The Virgin Diet. Now I have always been relatively slender and I work out regularly, but the premise of her book – ditch 7 foods for 7 days and lose 7 pounds – intrigued me.
It wasn’t so much the possibility of losing weight as it was finding those foods which trigger bad reactions and are most likely to cause the inflammation in my body. Since my teens and 20s I have had various reactions to what I thought was yeast – breads, cakes, and later wheat beers. Turns out it was probably the gluten and sugar. So I did the trial and found that wheat, sugar, and dairy are definitely triggers for me. For the most part, I have ditched gluten and dairy, but I do occasionally cheat. And my stomach will pay the price.
So what has helped me lift the “fog” and keep my symptoms at bay:
1. Exercise. I exercise daily if possible, usually first thing in the morning. I walk on the treadmill or elliptical, walk the dogs, do yoga or pilates, and use light weights. I aim for 30 minutes a day for at least 6 days. There’s usually one day a week that I am so tired I cannot get up to work out during the work week.
2. Diet. As I said I avoid certain foods and artificial ingredients. I also prepare most of my own meals and rarely eat out. Sundays are a big meal prep day for me. And they wear me out. But it’s worth it.
a. My breakfast is usually a protein smoothie with almond or coconut milk, pea protein powder, fruit, kale, and chia or flax seeds stirred in at the end. Also 1-2 cups of black coffee.
b. My lunch is usually chicken/veggies/rice or a chicken salad or leftovers or hummus and veggies.
c. Dinner usually contains lean protein, veggies, and rice.
d. I drink a lot of water. Hot water with lemon. Iced water – plain or fruit-infused.
e. I usually allow myself some dark chocolate or homemade protein balls or granola bar, and usually almonds and fruit are my snacks during the day.
f. At night I sometimes drink hot herbal tea to help with digestion.
3. Accountability. I use a FitBit fitness tracker and MyFitnessPal app. These two items help me be accountable to myself.
4. Supplements. At night I have reduced the number of supplements I take, as I don’t feel the body can absorb all of those things and it is better to get them through your food. I take Calcium + Vitamin D (otherwise I wake up with ferocious leg cramps, plus it’s good for my osteoporosis), Fish Oil (to help with the inflammation and brain health), and a probiotic (for digestive health).
5. Not trying to do it all. I have had someone else clean my house since right after being diagnosed. I don’t get my nails done. I don’t eat out. I would spend a day or two in bed after cleaning my house, so this is my splurge. My husband and kids do their own laundry and help with chores around the house. They understand my condition and don’t demand things of me – I am the one putting pressure on myself to try to do it all.
6. Attitude. Again, I have had my fair share of being sad and depressed about feeling like crap and not being “superwoman,” but attitude is a powerful thing in the battle of one’s health. So I choose JOY. I smile. I try to always believe that my glass is half full.
Notice I didn’t mention sleep, because that is one area where I am still lacking. Six hours of sleep is a great night for me, but five hours is the norm. And it’s even better when I can sleep straight through. This is an area I am working on, but for now life is good.
I hope this helps give you some ideas about what has helped me with my FMS struggles. (Click the links for additional reading.) Do you have other things that have helped you?
If It’s Tuesday, This Must Be Belgium is the title of a movie from the 60s that I saw as a kid. I don’t remember much about it, but the title stuck with me all these years and it always made me want to travel to Europe. Fast-forward several decades, and my family has done a little traveling in the states and abroad. Giving my children experiences has always brought me greater joy and pride than giving them things.
Because my daughter loves traveling as well, she recently announced her interest in studying abroad a semester when she is in college. A few weeks ago, I thought studying in France would be a tremendous opportunity, but now recent events has given me mixed emotions about the safety of foreign travels and studies.
Last week I read about a victim from the tragedy in France that really hit home with me. Her name was Nohemi Gonzalez and she was a design student from California, probably living her dream to study in Paris. She was out having dinner when she became a victim with so many others. As a parent I cannot imagine how difficult it is for anyone to lose their child, especially in such a tragic and brutal way that makes news around the world. We want to believe we will always be able to protect our children, but the most we can hope for is that we did our job in raising them so that they take care of themselves and make their mark on the world.
These days it is getting harder and harder to rest my head on my pillow after hearing the news of the day. Violence at home and across the world is common place. I worry that people are becoming desensitized because they hear these stories daily, and not enough of the “feel-good” stories to balance things out. Mahatma Gandhi said, “Be the change that you wish to see in the world.” Some days those things that are within our control are the only things that can make a difference. Here are the things I try to do to maintain balanced karma in my life, and hopefully I can make a difference for someone else along the way.
Love one another.
I plan to continue to travel and experience all our wonderful world has to offer, including Belgium and France some day. As we approach the holiday season and reflect upon those things in our lives that we are most thankful for, what is it that you do to maintain balance?
I am so glad you have chosen to visit my website and I hope you will continue to come back to read more! Over the years, I have found ways to accommodate Multiple Sclerosis within my life and still be able to maintain a normal and happy life! I do believe that a positive attitude can make a huge difference! I truly hope that my website will reassure others that they are not alone with these battles, my goal is to help others!