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

All backed up; opioid induced constipation

274783-main_FullConstipation is often a side effect of opioid use. It seems like you can never win. You take one medication to get rid of your pain, and then another one to get rid off all the side effects. It is estimated that out of all the patients who taken opiates for chronic pain, 40-90% will develop constipation. ( Via) There are many medications that your doctor can prescribe to you. Just like all medication regimens, finding the perfect cocktail is always a challenge.
Of course, when it comes to your bowel, this challenge is not always a fun one.

Besides what your doctor tells you, there are many things you can do to help yourself.
Diet and overall lifestyle changes will have a big impact on your GI system.
Try to make sure you:

• Increase the amount of fluid you drink per day.

• Eat more fiber. If this is difficult try adding a fiber wafer to your morning meal. Remember fiber doesn’t always mean oatmeal and whole grains. Fresh vegetables and fruits are wonderful sources of fiber, especially pears, apples, bananas, raspberries, and oranges!

• Get moving! Increase your exercise and daily activity.

• Allow time for privacy on the toilet. Also, stock you bathroom with good things to read. After all, if you are going to be in there awhile, might as well read a trashy novel or two!

If your stomach hurts from being bloated, try taking a hot bath, or using a hot water bottle. I move the hot water bottle from my stomach to my lower back from time to time.

Another trick to get things moving is to gently massage your stomach in small circles in a clockwise rotation. Start below your ribcage and work your way around. You will not need to use much pressure. This massage helps to get your intestines moving. It feels best for me after I take a hot bath when my body is a little more relaxed.

Herbs:
Just like western medications, there are many herbs that can help or hurt your medical situation. And should be taken only under the advisement of a medical professional. Some western medications can be affected by relatively what seem to be harmless eastern herbal remedies.

New advances in medicine are happening daily! There are now medications made specifically for people affected with opioid induced constipation (OIC). If you have been taking opioids for a while because of your chronic pain, one of these two medications just might help.

Methylnaltrexone (available as Relistor(R)) helps restore bowel function in patients.” It is delivered via subcutaneous injection and specifically targets opioid-induced constipation. When given alongside opioid therapy, it is designed to displace the opioid from binding to peripheral receptors in the gut, decreasing the opioid’s constipating effects and inducing laxation. Methylnaltrexone blocks peripheral opioid receptors in the gut and unlike other opioid antagonists has restricted ability to cross the blood-brain barrier. As a result, it antagonizes only the peripherally located opioid receptors in the GI tract, so it’s action reverses opioid-induced constipation without precipitating withdrawal symptoms or affecting or reversing the central analgesic effects of opioids .” (Via)

Another medication, brand name Targinact, combines the extended released opioid Oxycodone with extended release Naloxone to help the GI tract. This combination is a wonder duo! Naloxone is most commonly used to counter the effects of opioid overdose. Naloxone is an opioid receptor competitive antagonist. (Not to be confused with Naltrexone, which is an opioid receptor antagonist with qualitatively different effects, used for dependence treatment. Low-dose Naltrexone is in pain study trails at Stanford right now. Read my posting about the study.) By being an opioid receptor competitive antagonist, “Naloxone provides an inability for the opioid receptor to have an effect on the gut, counteracting opioid-induced constipation – without impacting on the centrally acting analgesic efficacy of oxycodone.” (Via) It binds to the receptor so that it does not bind to your gut.
Science just keeps improving!
opioid4

A major drug deal was signed this week between AstraZeneca and Nektar Therapeutics for the continued development of NKTR-118 and NKTR-119 programs. Both of these studies are something to watch out for in the near future. NKTR-118 is drug still in its testing phrase “that combines Nektar’s advanced small-molecule polymer conjugate technology platform with naloxol, a derivative of the opioid-antagonist drug naloxone.” (Via) NKTR-119 combines the drug from NKTR-118 and determines what opioid combination will work best with it to help eliminate constipation associated with opioid usage.

AstraZeneca and Nektar are both major players in the pharmaceutical market. It will be exciting to see what this new partnership will bring to the table!

Until then, make sure you eat right, drink plenty of water, and consult your doctor if you have any questions about what you can do for your GI system.

For further reading check out:

What’s the Best Source of Fiber: The Diet Channel

Scientific America

Medscape

University of Maryland Medical Center

Cooley Team

Also take the time and read this great blog about how you can take care of your intestines on Lumigrate.

Gluten free and tasty? How can that be?

flourless-brownieWhole 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

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