Approach

We all have those days. You know what I’m talking about it. The days that begin at a level 4 but end at a 10. The days that you find yourself curled up in a ball, whimpering for it all to end.

And it will end. That’s the thing with fibromyalgia flare ups, they comes and goes in waves. Your stress will end. The cold rainy weather will pass. And yes, your mother-in-law will return home. The trick to surviving it is your approach. I try to do it with laughter. And on that note, I leave you with this:

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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.

Party Date 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

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

Building a Support Network for Fibromyalgia

helping-handsIf you are dealing with a long-term illness, you have seen MANY doctors over the years. After a while, that number narrows down to become a focused team of health care professionals. Your team might consist of the following; a general physician, a pain management specialist, a neurologist, an endocrinologist, an acupuncturist, a massage therapist, a physiologist, a physical therapist, and the list of “specialists ” could go on and on. Each of us builds our medical support team differently based upon our needs.

Using this same model of a support system, I have a team of friends to help me out. A support team of friends can help you through your toughest challenges. Just like with a medical support team, everyone’s support team is different, they can help you when you do not know how to help yourself. However, a friend support team’s roles are never set in stone. Friends can help you with a bit of laughter, when you need someone to hold your hand during medical procedures, when you need encouragement, when you need a shoulder to cry on, when you need someone to bounce ideas off-of, or just when you want companionship during a “flare-up”. An organized support team becomes an essential tool to help you stay positive, healthy, and on top of your pain.

Developing and managing a strong support system is not an easy task. There are many issues that come up which make it difficult for your friends, and even your family members to be part of your support system. There is a huge challenge of keeping everyone informed about your ever-changing health condition. This challenge is well worth it though, because the friend support system comes in handy when you need it the most!

Honesty between you and your supporters is a priority. You need to be able to tell your friends what you need from them. And in turn, they need to be able to say what they can and cannot do for you. The best advice I was ever given was never be afraid to say, “No, you can’t do something”, especially to a friend. Make a pact with your supporters that they will never agree to do something unless they really want to so it for you. They should never feel burdened by you, and you the same by them. That way when you call asking for help, you know they are truly helping you because they want to, not out of pity. It seems strange to ask this of you dearest friends. But, by making this pact, it seems to help rebuild your self-esteem, especially after that sixth late night “help” call.

There are a number of ways to establish your own support team. I name mine based on what function or situation I need from that friend. I write down in my journal the following functions and next to each, I write a couple of friends’ names. I write down a few names next to each function to insure I always have someone to call if I need them, and I never exhaust my resources.

Nurse Betty: a friend to hold your hand while they take yet another sample of blood

Pal MD: a friend to call to discuss health care choices

Iron man: physical help needed, remember not to over exert yourself

Class Clown: a good chuckle cures all ails!

Let it all hang out: vent or whine about this and that, call when things are tough

Gossip Gal: a pal to chat with when you just need a friend

This side up: Flare-up = level 10+, I call this friend when my pain gets so bad I do not know how or what to make it better.

Smell the roses: You have become a hermit. Cobwebs have grown around your front door. Call this friend and get out and about.

Positive reinforcement: Life is great! You are wonderful! Call this friend and everything will be better!

Look at the friend support team like a grocery list. I tend to have about 3-5 people at a time on my support team. Each friend’s (and/or family’s) role can change over time. Some friends hold multiple roles; others drift in or out of your support team. And some of your friends might not be able to be part of your support system, which is also perfectly ok.

Think about building your support team when you are not overly tired or in pain. Make notes on what qualities your friends have that help you out the most. For example, my mother is the person I call to “Let it all hang out”. Because she also has Fibromyalgia, I can vent to her about ongoing medical bills and medication conflicts.

How to keep a strong support team:

Just has we become exhausted of dealing with our illness; our friends also become tired of hearing about it. Learn to rotate your support team. Do not vent to the same friend all the time! There is more to life than blood tests and trigger point injections.

Rotate who you call each pain flare-up. If you call the same person each pain flare-up, eventually, that person will become exhausted of the flare-ups just as much as you.

Look outside your own circle of friends for venting or medical advice. There are plenty of online help groups where many patients are going through the same medical issues. Like face-to-face discussion; reach out and find a support group in your area. The National Fibromyalgia Association is a great resource to locate a group.

Educate your support team. Fibro- My –Al- gee-a what? Help others understand what you are going through by giving them resources to read at their own pace. Some people do not want to know everything, others have so many questions it is arduous. Here are some websites that help family and friends understand more about FM:
www.fmaware.org
Mayo Clinic

Keep them close:

marilyn_phonesRemember, you will need someone from your support team the most when you can think the least. Keep your support team’s contact information handy; put their contact information on speed dial, create a Facebook group, paint their Twitter accounts on your ceiling, whatever you need to do to help you find them the easiest way possible.

Breathe right

1_blowing--windSometimes the smallest things can have the largest effects. Learning a simple task like controlling your breath will make a world of difference on your level of stress, anxiety, pain, and overall health. Think about it, whenever we become nervous, tense, or are experiencing a pain attack, we hyperventilate. Our breathing patterns become deep and fast, the amount of oxygen and carbon dioxide we have gets out of balance. This pattern not only adds to our anxiety level, but if this happens often, it will take its toll on our bodies. Also during times of hyperventilation, our hands and feet could tingle, the blood flow to our brain is restricted, and our airway passages could inflame, all because of the low levels of carbon dioxide. Like we really need any more added stress on our bodies in the first place.

Learning to control your breath will not only help Fibro patients, but it can others as well.

Breath control therapy can help people with problems such as:

* Fibromyalgia
* Chronic and acute pain
* Asthma
* Depression and low self esteem
* Unhealthy relationships
* Stress and anxiety
* Respiratory issues
* Headaches
* Recovering trauma patients
* High blood pressure
* Eating disorders
* Drug and alcohol recovery
* Singers
* Runners and other athletes

Benefits of learning to control your breathing include:

* Healthier body
* Increased energy levels
* Stress and anxiety reduction
* Positive body image
* Controlling your anger and irritability
* Better sense of spiritual awareness
* Overall better sense of well-being

Breathing, sounds simple right? Well, it takes a bit of exercise to get the hang of it, especially when you are in pain or stressed. To learn how to control your breathing, no matter how you feel, is a real skill.

Here’s a few different ways to practice controlling your breathing:

Cool air in- Warm air out 2008-03-19-big-nose

• Practice when you most relaxed (I usually do it before I go to sleep at night).
• Lie down or sit in a comfortable position, if you can.
(a knotted yoga position is not necessary)222997454_fd6de77346
• Close your eyes
• Take a slow and deep breath in through your nose.
• Concentrate on the cool air coming in through your nostrils.
• Hold your breathe a few seconds.
• Breathe out slowly, evenly, and quietly through your nose.
Pay attention how warm the air is as it exits your nose.
• Do this for a few moments until all your cares wash away- or for me, until I fall asleep.

Shallow breathing for long periods of time causes your chest and shoulders to tighten up. When you breathe really shallow, you are breathing from your upper chest and not from your diaphragm.

Here is another way to practice controlling your breath, which I learned from when I sang:

air_elemental_by_iriloth2• Lay down, with a pillow under your neck for support.
• Place one hand flat on your chest.
• Place one hand flat on your abdomen. (right bellow your rib cage)
• As you breathe, watch the movement of your hands.
• If your chest hand is moving, you are breathing shallow. As you take in your next breath, concentrate on making the hand on your belly move.
• Make sure to take slow deep breaths in through your nose and out through your mouth.
Note: When I was singing, I used to place books on my abdomen (right on my diaphragm) instead of my hand. However, I would not recommend it as a relaxation technique.

Here’s a meditation YouTube relaxation to listen to while you practice your new breathing techniques:
Simple Relaxation, a Guided Meditation by Quiet Mind Cafe

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