Secrets that I keep

I’m nobody! Who are you?
Are you nobody, too?
Then there ’s a pair of us—don’t tell!
They ’d banish us, you know.

How dreary to be somebody!
How public, like a frog
To tell your name the livelong day
To an admiring bog! ~ Emily Dickinson

There is a secret I keep.
I store it away deep inside me. Forever fearing that it will be told to another. This secret causes many trials and tribulations in my life. For if it leaks out, how will people look at me? Will they treat me differently? Will footsteps tread lighter around me? Or will they walk away from fear of the unknown?

My secret can’t be seen.
It can’t be touched.
It can’t be heard.
Then, how do I describe my secret to others?

I get the courage to face my fears, to share my story, and to slowly unveil my secret. Then, it becomes possible to even explain.

Holiday Survival Kit in Your Purse

Have you ever been judged by the type of purse you are carrying? Kathy Eisman reveals just what our handbags reveal about our personality, inside and out in her book, How to Tell a Woman by Her Handbag. She suggests that the colors and styles of our handbags say more about our personality than most might first believe. For example, if are a woman that just carries a clutch with the basic essentials- phone, wallet, and keys- you are a minimalist with organization down to a science.

So this got me thinking, how do I go to all my holiday parties without my purse revealing, “ My feet hurt! I would really love a glass of wine, but if I do I’ll get sick- Oh, and I caked on the eye make-up to hide the fact that I’m really tired and in a lot of pain. Damn, is there somewhere comfy to sit down around here?” Through years of planning and of course many parties, I think I have finally figured it out.

Make your purse a pretty survival kit for the holidays:

Packing the perfect purse is an essential tool for managing chronic pain especially during the holidays. Temptation lies around every corner this time of year, whether it’s staying up into wee hours of the night, eating too many sweets, not getting enough exercise, or just extra holiday stress; all of it can make us grumpy, tired, and in more pain than normal. So, when you do go out to paint the town red, pack your survival kit in your purse!

Plan your survival kit depending on the length of the event and the location.
First place aside the your basics:

The Basics:
• Phone
• ID
• Insurance card(s) (health, car, etc…)
• Cash
• ATM and/or Credit Cards
• Keys
• Lip care (Some medications can dry out your lips. Carry your favorite chap stick, gloss, or lipstick with you to keep your smile looking it’s best!)
• Mint strips (Medications can give you dry mouth. Try either mint strips from Listerine or small Altoids for relief. Plus, their small size makes them the perfect purse accessory.)

As long as I can rest my feet, get some water, and find a little nosh within my diet, the above basic list can take me to any holiday party, and it fits perfectly inside any fashionable wristlet.

The Basic Plus:

Don’t know what to expect from the party? How are you getting there? Will food be served that is on your diet? How late will you be out? Too many unanswered questions? Then, carry a bigger purse for your party survival kit.

• The Basics (see the list above)
• Water bottle
• Snacks- either a granola bar, some nuts, or dried fruit
• Paper and a pen

It’s amazing what a little food and water can do to keep the party going! By stabilizing your blood sugar, or helping your stomach with your medication, a lil’ bit of food can make a huge difference. I bet you are wondering why the paper and a pen? Besides getting cute guys numbers, just kidding (not really) I use it to write notes to my friends such as, “I’m tired, I’m going to catch a cab home. See ya! Love Amy.” Or just “Can we go soon?” In a big, loud party a simple note works wonders instead of trying to yell into your friend’s ear.

Other things to carry:

• A scarf or a wrap- Tend to get hot/cold a lot? Stay comfortable with an extra layer.
• Ear plugs- A party can sometimes be too loud. Need a break from the noise, but you don’t want to leave yet? Try on a lovely set of earplugs to step away from the main action. The really cool thing is that no one will notice. Everyone will just think you took a look around, or sat down for a bit.
• Anti-bacterial lotion (Purell)- Holiday season= flu season! Keep yourself sanitized.
• Hand Lotion- Medications and cold weather can make your hands dry. Help keep them soft and comfortable.

Arm yourself with your own holiday survival kit, and you will always be the life of the party!

Fun blogs to read:
www.girl.com.au
chick lit is not dead

Which came first the chicken or the egg?

The age-old question of which came first the chicken or the egg baffles scientists and comedians alike, and especially chronic pain patients.

Similar to the auras that precede migraine headaches, the onset of many of my pain attacks begin with simple yet effective signs telling me to, “Batten down the hatches girl, a storm’s a brew’n”. Usually a few days before a major pain attack, my IBS (Irritable Bowel Syndrome) acts up, my appetite decreases, and my sleep becomes restless. And, just to make life interesting, my warning signs have gone from a simple physical symptoms to a complex list of disorganized and unpredictable physical, neurological, and emotional reactions.

Part of the course with Fibromyalgia is memory lapse and a other neurological aliments called Fibro Fog. For example, my favorite is always the game of “Where did I leave my keys? – Just to find them in the fridge!” Fibro fog has always been manageable for me, until lately when it has begun to impair my ability to fully do my job. Imagine always having that one word on the tip of your tongue, that one idea just outside of your reach, that one memory remotely within your view- that is what my life feels like before a pain attack with Fibro Fog. Add in my usual IBS, sleep and appetite issues, and my life is just peachy.

This change in my body’s behavior led me to schedule an appointment with my pain doctor. Here’s the kicker- we do not know exactly what is causing the neurological issues. It could be the stressors in my life, my FM condition itself, or my medication. Hence, what came first the chicken of the egg?

The medication that helps my neuropathic pain has a side effect that could be causing my neurological symptoms. To make matters worse, without this medication I could not function as a normal member of society because of my nerve pain. On a day without a pain attack looming, my medication is at the appropriate level. However, combine the medication levels with the chemical reactions my body goes through before an attack, and WHOA MAMA let the Fibro Fog games begin.

So now, what do I do? My doctor and I decided to play the waiting game while I document my reactions over the next month. If we change my meds, I could end up in more pain, end up with a different type of pain, or better yet, end up with a whole other set of side effects: either physical, emotional, or neurological. Sometimes not knowing if the issue is a symptom or a reaction is the hardest puzzle to solve. Hopefully, by going back to the basics of keeping a pain journal will resolve all of our questions. I guess until then I will have a bunch of frozen keys.

Other sites to read on Fibro Fog:

www.fmaware.org
www.health.com
www.fibrohaven.com

Chronic Pain: High Wire Act

In the early morning, as the dew is still wet on my window, I catch slight glimpses of what can only be images of my past life. I am on a high wire inside a big brightly colored red and yellow striped tent struggling to find my balance. Light-headed from the lack of oxygen, my arms fully stretched out, and the view of the dirt floor many feet below me, this early morning dream leads me to believe that even the slightest move will send me falling to my death. Each journey out across that tightrope should be easier; however, every walk is different, every crossing new, and each path comes with it’s own challenges.

Living with chronic pain is like walking that high wire. You must find your own balance to make it through your day. The Flying Wallendas had courage every time they journeyed across their high wire. Just like them, living with chronic pain is a performance art of unfathomable courage and skill. For when I hurt, I have to pick myself up and try all over again, never showing pain or fear. For just when you think your life is under control, something happens to throw you off. It always does. The audience gasps in amazement. You can hear them almost whisper in your ear, “You can do it, just one more step”. While others are just there to watch you fall. The question is who are you going to listen to as you make your journey across your own tightrope. Even without all the glitz and glamour inside that big red and yellow striped tent, we are walking that same high wire on a tight balance of survival.

All Wheels 4 Fibromyalgia

Who says you can’t do it? Follow the team as they race across America!

” A cycling team of four cyclists and 12 crew members will race nonstop for 3,000 miles across the United States in the world’s toughest bicycle race the Race Across America (RAAM). The race begins on June 12, 2010 in Oceanside, Calif. and ends in Annapolis, Maryland. The objective is to complete this coast-to-coast race in the fastest time the goal is 6 days!
Mission:
The team’s endeavor, however, goes beyond completing this rigorous race. All Wheels 4 Fibromyalgia is partnering with the National Fibromyalgia Association, and select sponsors in a shared ambition to raise awareness of fibromyalgia, a complex pain disorder that affects an estimated 10 million women, men and children in the U.S.
Products:
All Wheels 4 Fibromyalgia will be raising funds to support fibromyalgia research and community-based education programs for individuals affected by the disorder. The team’s goal is to raise $75,000 by June 12.” (via All Wheels for Fibromyalgia’s Facebook Page)

Here are all the links so you can get involved:
Follow them on twitter as the team speeds along! @allwheels4fibro

Photos from 2009 All Wheels 4 Fibro! on Picasa

Want to help? You can donate to the National Fibromyalgia Association.

Life changes; going with the flow

Dealing with chronic pain for so many years, I have had my share of health insurance headaches. Actually, I think by now my brain is hard-wired to just have a headache anytime I hear the word health insurance. Ouch, there one goes again.

Recently, I started a new job. Which means switching to COBRA, then over to my new company’s insurance plan. While I was in the process of switching to COBRA, they decided to stop carrying my old health plan, unbeknownst to me, COBRA, or either of my health plans, old or new. Sometimes, I wonder if there is a man behind the big green curtain just messing with my medical insurance to watch me go insane. Really, if he is out there, he is winning!

This entire ordeal took place during the time I ran out of my medication. If you are reading my blog, you know exactly how freaked out I felt to be out of my meds. They help me sleep, get out of bed, and basically function as a productive member of society. At the same time, they add nausea, constipation, mood swings, appetite issues, and brain fog to my already complicated medical history. It’s truly a love-hate relationship.

After many phone calls and trips back and forth to my very patient pharmacy, I was finally able to resolve some of my insurance issues. Wait, I said some. To make a long story short, I was not able to resolve all my insurance issues. This has left me without one of my medications for about three weeks. I thought that this would leave me with many sleepless nights while suffering in pain, and not having the resources or strength to make it through a full day of work.

But au contraire, my pain is under control! If there is one thing chronic pain has taught me, it has been how to meet life’s challenges head on without fear. I knew the only way I was going to make it through my insurance debacle, was to think straight. The only way I can do that is by not being in pain. If I can’t have my medications to help me, what other things could I do to help myself? I watched what I ate, my activities, and my stress levels. Everything I really should be doing to stay healthy anyways, but now I was on survivalist mode. And you know what? It’s working! I have been able to make it through my days with less medication.

So please don’t forget, just because things might look worse for you one minute, give it a few. Think of how to react to your world around you and what is best for your body. Find your inner strength to meet your challenges. You never know how it just might turn out for you when you do!

When life gives you lemons, make lemonade!

I love to be in the heart of the action. I love the rush, the thrill, the feeling of your heart beating out of your chest as you are about to reach your goal. With my Fibro, I now have to watch on the sidelines. I can’t run at the head of the pack, for when I do, my body only stays there until it gives out, and I end up paying for my over exertion. You pay to play. And, my Fibro makes me pay a lot. It’s taken me years to figure out the checks and balance system of this syndrome, and I am still redoing equation as I go.

That’s the most confusing thing about Fibromyalgia, how to balance your life with your disease. Because they are not the same yet they do affect one another. As soon as you figure one thing out, another changes on you.
For comparison, let’s take a healthy individual in their early 30s; we’ll call her Jane. She eats right, exercises, and gets plenty of sleep, just like me. On the outside we look the same, except I have the added bonus of living life with Fibromyalgia. Which in simple terms means that I am always in pain. I have to continually work on gaining control of my body. Jane and I might look the same on the outside, but we are worlds apart on the inside.

If Jane slips on her diet, she might gain a few pounds. No doubt the same thing will happen to me if I ride the same slippery slope; however, my diet diversions come with extra perks, which are not polite to speak about in public. If I followed the rules and was a good girl, I would be eating a very restricted diet, saying goodbye to some of my favorite vices like sugar and caffeine. In fact, most fibromites avoid many of the delectable delicacies that life has to offer, sticking to an alcohol, sugar, and gluten free diet. Life is too short. I take what I can get in small doses. I don’t know how I would eat gumbo without cornbread. It just wouldn’t be civil.

When Jane falls behind on her excise program, she might lose a little of her muscle tone, or her jeans might be a lil’ tighter. It takes her a few days to get back in line. If I fall behind, I feel it everywhere, not just in my jeans. My joints hurt, my bones ache, and it takes every ounce of effort I have just to get out of bed. To make it worse, my bowels get out of whack, and I have trouble sleeping. The longer I leave my dancing shoes off, the harder it is to put them back on; nonetheless, all the more reason I should.

I try to get a full 6-8 hours of sleep every night. Yet when I wake up in the morning, I might as well just have taken a two-hour nap. With Fibromyalgia, your body never goes into full REM sleep mode. Your muscles might continually twitch throughout the night, leaving you tired and sore in the morning. ‘Jane’ can go out with her girl friends dancing all night, get three hours of sleep, and then, maybe she might just feel the same way I do on a normal Monday morning.

Having said all that, this is not a tale of woe. This is not an explanation of how ‘Jane’s’ life is easier than mine.
This is a story of triumph over obstacles. Remember my checks and balance system?
Check one, a normal gal, ‘Jane’ can eat a normal diet.
Check two, ‘Jane’s’ exercise program is easy to develop and maintain, compared to a person diagnosed with Fibro. Check three, ‘Jane’ can maintain REM sleep patterns in order to feel rested after a full night of sleep.

But how does the balance side of the equation come into play? My negative checks far out way the positive side of the calculation. Sure on the outside ‘Jane’ and I look alike. Two healthy looking young women, who eat well, get 6-8 hours of sleep, and exercise regularly. But why with all my constant pain am I better off than her? That’s right, read it again! I said with all my constant pain, I am better off than her.

I have learned to look at life with a different set of eyes. I think the saying goes, “when life gives you lemons, you make lemonade.” Yes, I am tired all the time. Yes, I hurt all the time. Yes, I don’t get to eat or drink just anything that I want in the world. And yes, my exercise program is not easy to keep up or forgiving. But with all these issues, I have learned to accept them, work around them, and dare I say it, almost enjoy them.

My value system now is keenly different than what it was before I was diagnosed with FM. I find that the littlest things do not bug me anymore, except when my pain is at its worst. You see, there are few days where I feel close to 100% well; days where my body does not hurt, my muscles do not ache, my mind is clear, my bones are strong, and my bowels are fully functioning. Of course those days are few and far between. Actually, I think I can count on one hand how many perfect, pain free days I have had in the past year alone. And on those days, those precious days, that is when I am truly alive.

Now, you must be wondering how do I make my lemonade from such sour lemons? Finding beauty in the smallest things is key. I love hearing live music, but the loud thumping bass and large crowds make my nerves stand on edge. That kind of made rock concerts out of the question. And mosh pits at a punk show, yeah right, ain’t gonna happen! So, my musical lovin’ brain and my body had a little heart to heart chat. Now at the performances I attend, I will either sit down, or stand in the back away from the bass and the crowds. If I really need to get my angry punk self on, I blare it from my truck in rush hour traffic! There’s nothing better to calm my nerves than Fumanchu singing King of The Road on the 101 at 8am! Over the past five years, I have discovered a new love for 20th century composers as well. I thought Beethoven had fire in his arsenal, then I heard Shostakovich, and my mind was blown away.

Before FM, I used go out at night to dance clubs. I was really never a drinker. My friends would go out to drink, and I would dance. I would like to feel the music through my body. Dance gave me that, and for a while Fibromyalia took that away. It was not until I found opera, ballet, and jazz, did I find that just seeing other forms of musical performance could help me feel the music without hurting.
Opera fills your entire body with emotion. The scenery fills your eyes with visions unlike your daily world. The sounds are so emotional that they help me escape the pain I feel. The opera itself transforms you into another world.
I loved all of these forms of art before my illness; now, I love them even more.

Thomas Moore said it best, “To the soul, there is hardly anything more healing than friendship.” My friends and family are now more important to me than ever before. They help keep me sane in the darkest hours. And they are there to help celebrate the best of times! Without them, I would not make it through many of life’s challenges. I don’t know if it being older, wiser, or the plain fact that with FM, I just don’t have time to mess around with any bull or drama, I now am very picky with my quality of friends. I might have fewer friends in numbers than I did before I was diagnosed with FM, but what I lack in quantity, they make up in quality!

And even when my life seems to have too many sour lemons to make any lemonade, I find sweet pleasures everywhere I turn. It doesn’t always have to be perfect to make me smile. The weather might be gloomy outside. I might be flipping a coin to try and decide to take 2 or 4mg of pain medication. My heating pad might as well of been unplugged for all the help it is giving my lower back. And yet, there is still something to smile about, if you know how where to look for the simple pleasures in life!

My simple pleasures: morning light on a dew drop, star lit nights, the smell of fresh rain, a nice cup of tea, a good book next to a fire on a cold night, my soft pillow, my bike on a twisty road, mixing yogurt w/fruit on the bottom, sharing good food with a friends, watching kids marvel at the fish feeding at the Cal Academy of Science, Tosca’s aria during Act II, and my list goes on…

What are some of your simple pleasures?

thanks to Sally W. Pruden for her beautiful lemon picture
See The National Pain Foundation’s Triumph of the Spirit Awards

Weathering the Storm

Have you ever driven through a town after a massive hurricane? The town looks worn down, beaten, but in a way stronger because it has made it through the storm, and will live to see another day. When you live with a chronic pain condition, your body feels just like that town, worn down and yet in a strange way it grows stronger.

Growing up in the south, you learn to listen to the weatherman during the same time every year and just prepare for stormy weather. Once and a while, the “big one” hits, and when it does, there is no doubt what must be done. Time to board up the windows; place sand bags where needed; bring the potted plants and garden furniture inside, and just batten down the hatches. There’s no use trying to hide.

Living with a chronic condition is like living in the storm belt of the south. Each condition has its own health hurricanes, as it may. After a while, you learn how to predict when they are coming, and how to prepare for them. The hardest part is learning to listening to your own body and taking the proper precautions before its too late.

Just like with any natural disaster preparation, when it comes to your health, making an escape route or a game plan can be your greatest ally. When a crisis hits or your pain is at its highest level, it is hard to think straight which can make it difficult for you to eliminate your pain or communicate to others what you need.

An easy way to make a pain relief strategy is to simply make a few lists of what types of pain you have, what makes that pain better, and then what makes that pain worse.

It sounds like a lot to do. But simply start brainstorming your lists together and it’s amazing what you will discover about yourself. Do the lists in whatever order feels best for your situation. Remember there are no right or wrong answers here. Just be honest with yourself.

List 1) Pain:
What types of pain do you have?
Write down whatever comes to mind. You can list physical and emotional issues here.

Examples: trouble sleeping, depression, all over body aches, headache, sharp right hand pain, dull lower back pain, constipation, etc.

List 2) Solution/ Therapy:
What helps you? What makes you feel better.
(I have done this list two different ways. I have simply jotted down things that help me out, and other times I match specific therapies to a type of physical or emotion pain.)

Examples: Heating pad, hot bath, medication, cold compress, stretching exercise, diet

List 3) Stressor/ Cause:
What makes things worse?
I find this list the most difficult to do. Take your time writing down things that you know make your pain worse. You might want to just keep a journal, and note how you feel each night before you go to bed. Write down in your journal any activities or changes in your routine that impacted your condition.

Examples: diet, sleep pattern, weather changes, money stressors (I notice that after talking to the health insurance companies my pain increases the next day), airplane travel, exercise (over or under doing it)

Now match up with your lists, pain with solution/therapy to stressor/ cause. When you are done you will have a chart that will help you listen to your own body. And when you can’t think because the pain is too high, all you have to do is look at your list.

Remember that this is just guide for you. It can be changed, altered, or simply thrown away and started all over again. Don’t be afraid to learn and grow. You have weathered the storm and you will be better for it.

Stanford Tests T3 for the Treatment of Fibromyalgia

Stanford Systems Neuroscience and Pain Lab does it again. Dr. Ian Carroll, MD, MS, and Dr. Jarred Younger, PhD are currently enrolling patients now in a new clinical trial to help fibromyalgia patients. Dr. Younger also worked on Stanford’s research of low dose Naltrexone for the treatment of fibromyalgia.

Stanford says on their site:(via)
“We are investigating whether the thyroid hormone T3 is one such treatment that may alleviate the symptoms of Fibromyalgia. There is significant overlap between the symptoms ofhypothyroidism (low thyroid hormone production), depression, chronic fatigue, and Fibromyalgia. Patients with low thyroid hormone production who have been treated with T3 for depression have had some improvement in symptoms.

This is the first study to examine whether T3 may help with the symptoms of Fibromyalgia. Studies such as this are a necessary step to having an investigational drug become a mainstream treatment. Your participation is a vital part of the search for an effective Fibromyalgia treatment.”

To understand how your thyroid works, here’s a great site:www.endocrineweb.com/thyfunction.html

I also found out about Dr. John C. Lowe. Here is a great interview with him about the subject on about.com.

To see any other clinical trials going on, looking at the clinical trials.gov page is always a good place stop.
Look here to see what they have to say about the study.

Click here to see Stanford enrollment form -> http://snapl.stanford.edu/t3/

Also, check out Lumigrate’s educational video: Hypothyroidism: Misunderstood, Misdiagnosed, Missed! by Dr. Scott Rollins

Gluten free and tasty? How can that be?

Whole foods just posted a great recipe on their blog (via) for a gluten free brownie recipe! Here’s the kicker- are you sitting down?- the secret ingredient is black beans! Who would of guessed? My sweet tooth and curious nature really wants to bake them for all my friends. Then, see if they can tell the difference between gluten free brownies and the ol’ wheat flour made brownies! Maybe at the next dinner party, I’ll try an experiment!

For the recipe from Whole Foods : Gluten free brownies

Other great gluten free sources:
www.glutenfree.com

Gluten Free Living Magazine

Bette Hagman:
The pioneer of gluten free cooking. Her cook books are wonderful. If you are planning on making your own bread, her cook book is a must in your kitchen!
Read more about her:
Macmillan Books

Bread Flour Formulas: Celiac Spruce Association