Getting back up

As a kid, my grandparents and parents always taught me to be strong, to never give up. Yes, sometimes they would say that I was just plain stubborn. I would always reply that I am just tenacious. But, somehow along the way, Fibromyalgia had beaten me down. It was a slow, steady beating. The type that you really don’t notice, until you realize that you can’t get back up. I would try something. Fail. Get back up, and try again. After awhile, I gave up trying as hard. I lost that tenacity, my stubborness. I could not get back up.

Then, about two years ago, the bull in me called BULLSHIT. My Daddy didn’t raise no fool. Why was I being one? Why did I roll over and play dead? Shit, I ain’t dead yet. I just have Fibromyalgia.

So, I stood up. Dusted myself off, and tried again. But that’s a whole other story

Today, I am thrilled to say that I am off of all my medication. Yes, all. I still have a few fibro flares, but they are only fractions of what they used to be. Yet, that fear of falling down and not being able to get back up is holding onto me with more strength than I care to admit.

Last Summer, I went to climb Half Dome. Well, I should say tried to climb Half Dome. I pushed it on the hike by trying to keep up with my hiking group, and by the time we reached the sub-dome, I fell down and couldn’t get up. Actually, my body plain gave out. I started seizing and an overwhelming pain ran throughout my body. I’m sure on the outside, I just looked tired. But on the inside, I was screaming with all my might in pain.

Though somehow, I did, I did get up to try again. I made it back down the mountain and continued to fight to improve. As soon as my two week long pain attack ended after Half Dome, I placed another physical goal in my sights — I booked a trip to hike for five days in Peru. Don’t ask me why I went from not making a 22 mile day hike to booking a high elevation, almost week long hike in another country. But if you are gonna live, you might as well give it all you’ve got. Right?

Next week, I am off to Peru to hike to Machu Picchu, five days of hiking in fact. My emotions are all over the place. I’m excited. I’m thrilled. But most of all, I am scared to death. And, this fear is eating me alive. It’s starting to eat away at the joy. What if I fall down again? What if I can’t do it? What if I have a pain attack on day one? Tons of what ifs. And this time, I am doing this with perfect strangers.

Then, I remember that I am in that stage of my life of  called “after I no longer accepted that I couldn’t do it.”  So, I’m getting up. Packing my bags and facing my fear head on.

Here’s to living! See ya when I get back.


The Super Villains Of Chronic Pain


One would think that the main super villain of chronic pain is actually the pain itself. That’s not the case. Pain is only the catalyst to an evil plot that inflicts harm and discord. The true evil in this tale are pain’s band of super villains. The actions of these super villains reinforce fear and uncertainty in an already unstable world, thus continuing the physical and emotional pain into a chronic state of chaos.

Introducing the real super villains of chronic pain:

The Green Goblin

This super villain loves to spread a feeling of ill appetite and nausea. No matter what one eats or drinks, there is zero rhyme or reason as to when and how much The Green Goblin will strike. Medications and acidic foods help his power increase with intensity. Mint, ginger and other herbal remedies are sometimes your only defense against this opponent.

The Deadly Taint

Usually striking a few days before a full-blown pain attack, the Deadly Taint can hit hard and fast. Sometimes, the Taint’s powers can last throughout the entire pain episode, where as other times this villain comes and goes with ease. Soft toilet paper, wet wipes and a book in the bathroom can lesson the unease of the Deadly Taint’s attack.

Sleep Monger

The Sleep Monger’s name is cursed most often during the wee hours of the night. The Monger’s main power is to keep you wide awake no matter ow much you want and need to sleep. Defensive measures such as a warm glass of milk, a lavender bath, a dark room or the most comfortable of comfy beds is no match for the Monger’s evil need to keep you awake. Some say that the Sleep Monger owns stock in silly late night TV shows and AngryBird. However, reports have never comfirmed this to be true or just a rumor.

The Fog

Known to many as Fibro Fog, this super villain attacks when a fibromite least expects it and needs it. (For example, it just attacked me. I had to spell “least” five times before I actually typed the correct word.) The Fog is known for its inapt ability to place your keys in the freezer, milk on your toast and butter in your tea. Task lists and keeping a schedule is the best way to combat the Fog.

The Gloom Gang: Doctor Doom, Mr. Solitude and Shade Master

This gang leaves a trace of melancholy in the wake of their destruction. Members of the Gloom Gang can attack on their own, but they tend to hit all at once or in succession of one another. A Gloom attack usually starts with Mr. Solitude forcing a fibromite to be alone in their pain. Next, Shade Master spreads the fear of the pain with no bight end in sight. This feeling of fear and hopelessness is the Shade Master’s supreme power that helps Doctor Doom lay his path of depression — a path that would make Poe look to be a frolicking happy-go-lucky poet.

The gang strikes best after a fibromite has been fighting all of the other Super Villains for an extended period of time. The Gloom Gang also will speak through idiotic doctors, family and friends by whispering “It’s not real.” Only a fibromite’s best friends and skilled doctors have the weapons to fight The Gloom Gang. Their weapons exist in everyone, but few use them to help fights.  Weapons such as patience and offering help even when it’s rejected are key to killing the gang. A fibromite can cause the gang’s demise by finding joy in the little things.

What weapons do you use to kill this unruly gang of super villains and gloomy miscreants?

Avoiding A Flare-up While At a Conference

imagesThis past week I have been at Content Marketing World. Traveling is already hard enough on my body. But, with all the networking, long hours, tons of work and extra energy a conference takes, your body goes through extra turmoil. It’s just a recipe for disaster — especially if you have fibro. So, how do you balance your business activity needs with your fibromyalgia?

Here’s what I do while I’m traveling for a business conference to make sure I don’t have a fibro flare:

Stick to a routine

We all do stick to a routine at home. Why not do it while you are traveling away from home? Presently, I am in a completely different city on a completely different time zone and therefore on a completely different routine. However, I try to stick as close as possible to my normal routine. When I’m at home, my morning routine is pretty simple — feed the cats, exercise, shower, make breakfast and go to work. So, I try to stick to the same scheduled routine while I am at a conference, minus the feeding of the cats of course. This helps my body adjust to the time change, stay alert and pain free.

Take extra time out for yourself

Crowds and continuous activity can be daunting for anyone, especially if you have a chronic pain disease. There is no rule book that says you HAVE to go to every session at a conference. Take a look at the schedule and see what sessions you can miss or where the gaps are in the schedule, so you can take some “me time”. For Content Marketing World, I skipped a session a day and tried to step away from the crowd for at least one break a day. This helped me remain fresh and alert for not only networking, but the breaks helped my body recharge.

Hydrate, hydrate, hydrate!

I can’t say it enough — hydrate! I usually drink tea, but while I am away at a conference sometimes I need that extra jolt from a cup of coffee or two (or three). There’s nothing worse than coming down off of coffee to bring on a fibro flare. I carry a water bottle with me throughout a conference to make sure I drink water constantly. I also carry one on the plane. This helps me stay hydrated ,and plus it’s handy if I need to take an extra pain medication later on in the day.

Carry extra meds and vitamins

I started taking Emergen-c packets with me every time I travel — so much so that I have a box of the packets located on the shelf by my travel toiletries. The extra boost of vitamins help me not get so exhausted. I also carry with me a variety of meds and herbal teas to help with any mini-flares. At home if my body hurts, I have a variety of homeopathic remedies to help. Well, since it’s kinda hard to carry all of my comforting remedies in my carryon — like a heating pad, ice pack, bath salts, Icy Hot, etc… I have limited my remedies to a few herbal teas and pain medications in different dosages. I carry the different dosages because I just want to dull the pain enough to keep my mind fresh and my body strong enough to continue. The herbal teas are also easy to take anywhere at anytime, all you need is hot water. Most hotels have a mini coffee maker in the room, which is perfect for a cup of Smooth Move or Sleepy Time tea.

Dress for comfort

This tip can really apply to any avid conference goer. What’s the point of wearing heels or a fashionable top if they make you uncomfortable? I find you the best fashion accessory to wear while you are at a conference is a big, bright happy smile.

These are just a few tips I use to get through a conference successfully. Hopefully they will help your next conference or business travel experience be pain free!

What tactics do you use to manage your fibro while at a conference?

5 Myths About Fibromyalgia

Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you or a loved one has been diagnosed with fibromyalgia, you may come across some myths and misconceptions while trying to learn all you can about the condition.

Here are the top 5 myths I always hear about fibro:

1. The China Doll – Fibro patients are fragile.

This myth can’t be further from the truth. Sometimes, fibro patients can be emotionally and physically sensitive, but it takes a ton of perseverance and strength to live with fibro. We can’t measure our strength by the number of miles we run or the number of pounds we bench-press  — instead, we measure our strength one day at a time. Today, I am strong enough to get out of bed. Tomorrow, I am strong enough to clean the house. And, the next day, I might be strong enough to try to take over the world… mu ha ha ha

But seriously, everyday it takes great courage to just keep going – to live our lives to the fullest, no matter how much pain we are in that moment.

2. It’s all in your head – Fibro is a made up disease.

Just because you can’t see it, doesn’t mean it does not exist. In the beginning, Fibromyalgia was a last resort diagnosis. One was tested for everything, and when nothing could be diagnosed with certainty, the doctors said you might have fibro. However, that ‘s not the case anymore. Every year, more and more is discovered about the disease — and not just how to diagnosis it. In the early 1980’s, doctors developed a pain point test to diagnosis fibro. Today, “researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.” via MayoClinic

Being that a fibro patients’ brains process things differently, one could say it really is “all in our heads”.

3. The pain can’t be that bad.

At first glance, it might look like the daily pain of fibro isn’t that bad. Daily fibro pain is more exhausting than anything. Imagine that you have an all over body pain, similar to a flu-like-pain, every day. Yeah, it’s just like that.

But then, there are the pain attacks. I usually get one at least once a month. I love to put my best foot forward, so during my attacks, I tend to hide. (Pain attack = hermit.) So most of my friends don’t even know how bad the pain can really be — like kill me now type of pain. Though, I’m never sure if this hide-away-during-pain-attacks is better or worse for my friendships.

4. Fibromyalgia is a women’s disease.

Research shows that about 80-90% of those affected in the US by fibro are women — leaving 10% are men. Now, I’m never sure if this is because women keep trying to figure out what the hell is wrong with them or that men give up trying.

5. There is nothing that can be done to treat Fibromyalgia.

There is no miracle cure for it. But, there are a ton of things from homeopathic to western medicines that can help ease your symptoms. The trick is finding which one, or combination of ones work best for you. And remember, what works for some, might not work for others. So, why advice is nice, it’s best to listen to your own body as you figure out what solution works best for you. However, there are a few that work for almost everyone – diet, exercise and reduced stress.

Fibromyalgia is still a “new” disease. We are still learning new things and constantly debunking myths about it. What have you learned lately about fibromyalgia?

Stay or go? Adjusting to Fibro in a Relationship

images-1When you have been dealing with a chronic illness for over a third of your life, it becomes a part of you. It’s your version of normal. However, it’s only your version, not everyone else’s. And, this is never more apparent than when you are in a relationship.

No one ever tells you that once you find someone who loves you, they might not love the challenges your relationship will face because of  your health. At first, the symptoms are manageable and don’t seem that bad, the therapies don’t really interfere with your relationship—no biggie really.

Yeah, you’re not normal, not fully healthy, but it’s manageable. At some point though, the reality sinks in: this thing is going to be around for awhile, it will impact your relationship and there are no guarantees.

Then the bomb hits. You think you have someone who loves you for you, illness and all. You have to live with this, and they don’t. There’s the dilemna-do they stay or do they go? Do they face your illness’s challenges with you or not?

No one can fully understand what you suffer with everyday, your trials and tribulations. How you can be perfectly fine one day and in agonizing pain the next day? Especially when you have fibro, where others can’t “see” your pain.

How do you make them see what you are going through? Or how do you learn to set them free of your pain? I fear that I will never be strong enough to answer those two questions.

Coping With Extreme Weather


Life is short, so I try to make the most of it. Try new things, venture to new places, and go boldly where no sane person with Fibro would ever go– the Black Rock Desert.

Call me crazy, but I really just wanted to see if my body could handle it. So, I packed up my things. Crossed a few fingers. Hoped for the best, and ventured out to the desert with my boyfriend.

Here’s what I learned in my 72 hours of desert sanctuary– DON’T DO IT! Nah, just kidding.

If you must put yourself in extreme weather conditions, like the 102 degree weather and utter dryness of the Black Rock Desert, try to follow my top 10 tips to survive:

  1. Stick to a routine. We all have our normal routines at home. Try not to change it. This will help your body adjust to the weather conditions.
  2. Take your meds as planned, even if your routine is a little off. I woke up with the sun (at 5-f-ing am)– 3+ hours earlier than normal. I tried to take my meds at 8:00 am, just like I do at home.
  3. Stay covered. It seems simple, but staying in covered from the direct sun helps. I wore a SPF 30 rated long sleeve shirt to protect myself. The last thing I wanted to deal with was a sunburn.
  4. Stay hydrated. Again, it seems simple. We all have meds which can cause us dry mouth. It’s hard to take care of cotton-mouth and stay fully hydrated. Try a variety of drinks- cold and “room” temperature. Also, try to avoid taking any meds that just add to dehydration– for example most opiates cause dry mouth.
  5. Try new therapies. When my body aches, a heating pad or a hot bath always helps. Yeah, like that was going to happen in the desert. Hot therapy does not work when it’s already f-in’ hot outside. I found that cold helped and sleep.
  6. Take every chance to keep your body cool. I froze drinks and took trips to the lake to enjoy a lil’ fresh water. Though, what I really wanted was a cold ice pack for my neck. Maybe, next time I’ll remember to bring one. 
  7. Stay away from alcohol. Yeah, learn from my mistakes. I had some scotch with the boys, and I regretted it the next day.
  8. Keep on your diet. It’s hard to stay on your diet when you are in the desert with limited supplies to a produce market. However, if you pack well, it’s easy to plan ahead.
  9. FInd a quiet place. This seems silly when there was desert as far as the eye can see; however, having some alone time helped me center. At one point, my hypersensitivity kicked in,and everything bugged me. All I needed to do to gain control again was step away from the party.
  10. And my last tip… Book a hotel in the desert- like Las Vegas– and then go to the spa! 🙂

Hopefully, these tips will help you on your next camping trip to the desert. (The last tip especially.)

2 Sides of the Coin

Today is like any other rainy Saturday. I’m just sitting hear playing around on the net while trying to distract myself as my fibro pain remains at bay. However, I know that any second now the pain is going to hit above a level 7. Oh boy, what fun! So what do I do but torture myself by reading articles on FMS. Yeah I know- I’m smart.

However, I found an article that caused me to wonder. Turns out that the American Chronic Pain Association (ACPA) and Forest Laboratories Inc. just published some interesting results from their recent surveys- “Two Takes on Fibro: Public Perceptions and Private Realities” – designed to gather views about the condition from the general public and fibromyalgia patients themselves. 1,022 adults from the general public and 1,215 fibromyalgia patients were questioned as part of the studies. (via)

The results fascinate me because I don’t think that I’ve ever asked many of my friends about their perception of FMS or how I deal with it. According to the surveys, this is not uncommon. In fact, may of us feel that others see us as weak- hence why we hide our illness from some. The results show that the general public see people with FMS as courageous- a surprising 41% of them. And, only 17% of FMS patients feel that this is the case.

With me, it depends on who I’m calling the “general public”. People who know me personally who see my ups and downs- sure, I believe that they see me as courageous. However, those people who do not understand or worse yet, don’t even believe the existence of FMS- I think they only see my life struggles as failure. Makes me wonder just how do my friends see my illness. How does my family? My co-workers?

The surveys also showed the impact that FMS has on our lives. 

Career and Work

• 60% of fibromyalgia patients said they take more personal days or sick days.
• 70% said they have trouble completing work-related tasks.
• 56% reported that their personal income has declined due to their symptoms.
• 61% disclosed that their work life was more difficult due to fibromyalgia.

Intimacy and Romance

• 64% of fibromyalgia patients reported intimacy difficulties.
• More men (56%) than women (48%) found it difficult to be physically intimate with a partner.
• 15% of women and 25% of men reported not being able to sleep in the same bed as their partner during a fibromyalgia flare up.

Everyday Activities

• 71% of fibromyalgia patients disclosed having difficulty cleaning, vacuuming or doing yard work.
• 58% reported difficulty taking out the garbage or carrying groceries.

I wonder if I took this survey, how I would answer. My life has so significantly changed since my FMS onset, that I really don’t see difficulty with work or daily tasks. Some activities I just don’t do anymore. Like yard work- why bother when I can be out having fun on good days.

So I ask you friends, family and strangers-

How do you see people who have fibromyalgia?

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.

Your journey

I forget that I have fibromyalgia. It is such a part of my daily life that it has become a part of me. But then, I meet people that remind me that times used to be different.

When I first became really sick, my illness was me. It consumed me. My fibro owned my life, and unfortunately it also owned the lives of the people who were closest to me. I could never gain a hold of my health or my life. Some of my friends left me as times got tough, and others just slowly vanished.

I digress; this is not a tale of woe, but one of triumph and success. In the last few months, I have watched one of my dearest friends face the same battle that I dealt with almost a decade ago.

We all know the story. You go to doctor appointment after doctor appointment, procedure after procedure, and surgery after surgery, just to have at least 1% of your pain relieved. You’ve even tried every single homeopathic “cure” out there. But, nothing worked. Nada. Zilch. Zero. Until one day, you discovered what works for your body. It’s like the angels parted the clouds, and you have a life again!

Now, I want you to take moment to stop and really think about the past.

What did you lose?

What did you gain?

Getting your health back is more than just that. You will see the world now in a different light. The wisdom and strength you have gained can never be taken away from you. As people around you rush forward with their lives, you appreciate yours even more. The life you live, the journey you have taken, and the path that you are now on is up to you– only you.

I’m proud of you Medea for never giving up the fight.

Which came first the chicken or the egg?

Which came first?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:

%d bloggers like this: