National Fibromyalgia Awareness Day is May 12th!

What is Fibromyalgia?

Fibromyalgia Syndrome is a cognitive disorder that affects the central nervous system. This is a disease, and there is no cure. This disease is characterized by widespread musculoskeletal pain, chronic fatigue, depression, fibro fog, and fibro flares.

Fibromyalgia is a central nervous system disorder. The brain is continuously firing pain signals throughout the body. The entire nervous system fully reacts, becoming oversensitive to everything around us! Responding to this unpleasant stimulus, known as “noxious stimuli” is what a person with fibromyalgia feels. Lights are too bright, smells are overpowering, noises are too irritating, heat is too hot, cold is too cold, and touch is too painful.  Happy Birthday, Fibromyalgia…?

Chronic fatigue felt by a person with fibromyalgia is never-ending, even after a full night’s sleep. (Stay awake for three days, doctors report this is what the fatigue of fibromyalgia feels like every day.) Energy is fleeting. This is not just being tired and taking a nap to refresh yourself. It doesn’t matter how much sleep a person with fibromyalgia gets, exhaustion is felt throughout the day. Many individuals have sleep disorders that prevent them from obtaining a deep sleep, this adds to the fatigue already experienced by the individual with fibromyalgia. Should I Leave the Spoon Theory Behind?

Depression is common in people with fibromyalgia. It was found that a person with Fibromyalgia has lowered dopamine level production. Dopamine and the Fibro Brain.  Your sense of well-being is limited. Living with pain and fatigue, day-to-day, will also cause depression.

Fibro fog is a cognitive disorder. This is not like just forgetting someone’s name or where you put your keys, this is a dysfunction that occurs in the brain. The Fog of Fibromyalgia.

A Fibro flare is a temporary increase in pain and/or symptoms of fibromyalgia. This occurs when we over-do things, expending our energy, and at other times for no reason. This will pass, but you will experience flares throughout the entire time you have this disease. Fibromyalgia Flare! Again.

There is a full list of fibromyalgia symptoms listed on this site’s menu, I have only covered the basic ones. Fibromyalgia Symptoms.

~Kimimg_0753

This is Fibromyalgia on the Road

We have been on the road for two solid months. (The Stone Begins to Roll.) I can tell you now how this lifestyle is working for my health. Physically and Mentally.

First, I want to be straight up with you. RVing was an option the hubby and I found very appealing for us. The actual cost of living for full-time RVers is much less than living in a ‘sticks and bricks’ home. I think the ability to downsize dramatically was easier for us then it would be for a couple with children. We had less emotional attachment to our stuff. Finally, Jeff was willing and able to make a career change. Basically learning new skills to become a day trader that would allow us to become mobile. We can now live anywhere.

During the beginning of 2019, when we decided to get serious about selling our house, we began to do in-depth research about everything there was to learn about the RV lifestyle. I can not stress enough the importance of research! The information on the internet is vast. YouTube videos became our nightly news. We hit every RV Trade Show we could. Camping World became a second home. There is so much to learn, and it can be just that, learned! Heck, if we can learn it, you can too! No one is going to hold your hand, but it seemed everyone who currently RV’s is more than willing to help!

When we finally put our house on the market on August 1st, 2019, we knew we would not be able to make our September mortgage payment. I had a serious heart to heart with our realtor. He knew what the stakes were.

We used to be your average everyday middle-class couple. A few month’s savings in the bank. A two-car garage with his and her cars to fill it. We bought a city duplex, always adding an additional income to our plight. Then it all changed. President Obama started implementing his policies, and our life was simply turned upside down. Yes, the poor were cared for and insured and the middle class, most of it anyway simply disintegrated.

Our insurance rates tripled. Jeff was phased out of his high paying job, as were many because of the cost of healthcare per employee. Jeff took a much lower-paying job that was actually one of the highest paying jobs left in his field. Having a chronic illness is very expensive. I went through numerous hospitalizations and surgeries. My insurance company crumbled and closed. I had excellent insurance, then I didn’t. We paid three times more for health insurance and received less coverage. Medication costs skyrocketed under the new government. We somehow made too much money to qualify for medical or financial assistance through Obamacare. We just weren’t poor enough, yet. We quickly found ourselves not quite making it from check to check. We began the downhill spiral into credit card debt…

We sold our house in five days and closed in thirty. (This just does not happen!) We were extremely lucky.

Currently, it turns out my daily pain has decreased substantially. When we began RVing, I could barely do stairs. My pain was absolutely debilitating. I could not cook, I couldn’t stand that long as my back pain was severe. I could not physically do much of anything. Now the stairs are an afterthought. Cooking is convenient, even more so now that my hubby has time to grill! Cleaning the entire RV takes less than 20 minutes. I honestly can say I enjoy living in a space I can care for.

Mentally, in the beginning, it was surprisingly difficult to deal with. I felt a bit like an orphan with no place to call home. It’s a strange feeling. A bit unnerving. Luckily those feelings pass quickly! I am genuinely in the best headspace I’ve been in for years. I think the hubby would agree, and I believe he would report his own improvements as well!

We are now confident we will bounce back financially. We now live without fear of the next mortgage payment. We still have bills, but they are manageable! Physically I continue to improve. Yes, I still have bad days. Evenings remain very difficult for me. Going the entire day with almost no pain has been a gift! I am cautiously excited!

I know this isn’t everyone’s bag of chips for many reasons. That is OK. Control your surroundings and make your living area into space you can manage and enjoy.  What does that look like for you? That is the right way! Be kind to yourself, don’t beat yourself up. Life is hard enough. You are so much more important than stuff. Always.

Live your best life!

img_7612-2~Kim

A Wedding and a Power Ranger

I completely forgot to finish the second part of my original post! To read the first installment, click here. But it really isn’t necessary, this is pretty self-explanatory.




As we were ready to say our vows, listening to the beautiful singer we had hired for our wedding belt out “I Believe in You and Me.” My husband-to-be said to me,

“I don’t want you to freak out, but I have to tell you something.”

(Oh, God…) “Okay.”

“There is a Power Ranger behind you, he is running, you will see him soon over your left shoulder.”

“Liar.”

“No, there really is… a small-ish child … er, Power Ranger now visible over your left shoulder.”

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Yes… there was Power Ranger, a RED one, in action at my wedding. Running to and fro. Making the other children cry as they wanted costumes too. Whose kid was that? Why was everyone just sitting there? Someone should corral the Ranger! Jeff grabbed my hands, this made me look at him. Jeff smiled the ‘everything is OK’ smile.

We discovered later that my mom invited the Power Ranger’s mom to my wedding. The mom of the Ranger was my husband’s first ‘real’ girlfriend. (Yes, I’m not kidding!) My mom still denies this little extended invitation. The result was a Power Ranger at my wedding.

My brother in law was our photographer. He later said, as he was attempting to photoshop out the sneaky little ‘Ranger,’ he and his wife didn’t have ANY superheroes at their wedding. He said he was a bit jealous. I chuckled. He promised me we’d be laughing about this in ten years and we are.

The bachelor and bachelorette parties were very successful. My sisters threw me a beautiful shower. Jeff went golfing with his buddies. My mother was his caddy. That’s right! My mother invited herself along! I guess that is one way to prevent any chance the bachelor might go to a strip club! Let me tell ya’ my mom was (and is) a force to be reckoned with!

In 2004, Jeff and I were living together in Uptown. An eclectic neighborhood in Minneapolis, Minnesota. We were preparing for our wedding and packing for a 10-day trip. We would have our wedding, and a honeymoon at Camp Wilderness, a boy scout camp. We rented the entire camp for our weekend wedding.

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It was a beautiful fall weekend when we got married. Every guest was assigned a cabin if they chose to stay for the weekend festivities. (There were various hotels in the area as well.)

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This is the Boy Scout camp was where my husband, along with my brothers, attended. Some of our nephews also found their way to this camp. My husband achieved an Eagle Scout level. This camp was also where my husband was a scout leader and an instructor on the firing range.

After the ceremony, we had a prime rib dinner and sang karaoke! As soon as the sky turned to night, we built a bonfire, and the guests enjoyed s’ mores. The following morning there was a hot breakfast served! The day was filled with football, archery, hikes, and opening gifts. I truly enjoyed my wedding. Many of my guests still say they remember my wedding day fondly. That is so nice to hear.

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Fifteen years ago, I became Mrs. Jeffrey Johnson… and a red Power Ranger attended my wedding!

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Moody Monday (Visitors)

Visitors

.

Leaves were falling

the air crisp,

pain palpable

Anger pushed forward.

.

Winter brought snow

one tear fell,

another broke free.

The sadness of it all.

.

Its name is Grief

it asked to stay.

I agreed,

but only for a little while.

.

Cardinals sang in the spring

I met Surrender,

Grief bid me farewell.

Only Surrender and I remain.

~k.Lynel

Good Morning! Feelin’ Fibro?

What do mornings feel like when you wake up with a chronic pain disease like fibromyalgia? I was stumped when people would ask me how it “felt” to have fibromyalgia. “Not good?” Seriously, it is hard to explain. Some say like the flu, others like the flu with a sunburn. Some say it’s like being held under water while you have the flu… do you see a running theme here? I finally figured out three examples I can use to explain what it feels like to have fibromyalgia.

-Ever had the flu and been in bed for an entire week, getting up only to throw-up? Your body hurts!  It feels like the day after you get over the flu. Knowing it could get worse, could get better… you are just unsure and still hurting from a week in bed.

-Ever ran track? It feels like the day after the first practice of the season.

-Ever played basketball, football, or volleyball? It feels like the day after the first practice of the season.

Fibromyalgia is basically a nerve disorder. Overactive pain signals are coursing through your body, and your brain’s response alerts you to feel pain. You are in pain, every minute of every day, only the degree of pain changes. Along with the pain are fibromyalgia’s little pain pals that show up uninvited. Backaches, headaches, vertigo, fatigue, nausea, restless legs, depression, and oh so much more! It’s like a fierce fibro gang hell-bent on reminding you that you are a member!!

Here are a few of fibro’s pain pals:

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(~Pinterest)

So, a day with fibro begins in pain as you wake up you feel like you’ve spent all night not sleeping but thoroughly planning and cleaning your house for a fancy dinner party that you will be hosting! The invitations have gone out, the RSVP’s have rolled in, and you have a three-course meal to prepare for twelve people. You are beyond exhausted and yet, you have to put on your party clothes and host this shin-ding! Hence, your day begins with you feeling like the party guests will be arriving any minute and you are too exhausted to even shower. Now, get out of bed…

Good Morning… Feelin’ fibro?

Live your best life!

img_0992-4~Kim

Does Anyone Ever Get It … Bojana Did!

Does anyone who does not have fibromyalgia ever understand what it’s like to have it? I believed not. I felt people tried! However, after reading this poem from Bojana, I must withdraw my statement, “In order to get fibromyalgia, you must get fibromyalgia.” Not only has this wise woman had to take on the language of a country foreign to her, but she has also taken on trying to understand this disease that I have. Bojana, you are a true friend. Your words dance in front of me with understanding and accuracy of tripping over the stone that is fibromyalgia. Thank you for proving me wrong. You get it.

You may read Bojana’s incredible poem here.

 

 

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With the utmost respect and thanks, my friend. ~Kim

Look! I Made it Myself!

I was reading some posts on The Mighty. This site now has an App. It’s very similar to Twitter, but not on steroids like Twitter! The Mighty site is much more deliberate, somewhat passive. It is chronic illness focused.

It can be overwhelming to read people’s comments. There is a lot of hopelessness out there. I’m not sure if I like this (very) new platform or not, but I did come up with a meme. I found myself responding to many people’s questions about chronic illness with “no choice.”

Feel free to share! I have two versions. ~Kim

 

Escaping Through the Fog

I have some thoughts to share with you. I don’t know if I am right, but this makes sense to me. How do we escape the chronic pain we are in every day, 24 hours a day? I think the answer is Fibro Fog. Is it possible we are dreading the very fog we should be welcoming?

Those of us who suffer from chronic pain know that our fight or flight system is in overdrive! Firing random pain signals throughout our bodies. Our brains, not being able to keep up with the constant demand for action from these signals eventually shuts down our conscious thought. This cognitive dysfunction is what is often referred to as fibro fog. (Also known as brain fog or cog fog.) 

Chronic pain patients don’t have a scale for their pain. Chronic pain patients go through stages of suffering. We either can associate or disassociate with what our reality IS. The reality of the pain we suffer with on varying severity levels. When associating, we are feeling the actual pain and physical suffering. When we disassociate, we busy our minds to try not to feel the reality of our current situation.

Eventually, we reach our individual level of intolerance. We can not continue to suffer from the unending pain! We enter a state of numb; it is a state of cognitive dysfunction. When in a cognitive fog, we will not remember that time. Retention is obsolete. We lose time; hours, days, weeks. Our brain has to rest, we need to rest… the fog has enveloped us. Not so much relieving our pain, more like numbing our brain to react to it.

Finally, we can be in a fog and still have pain, but we won’t remember most of it. I believe fibro fog ‘happens’ to allow us time to be unaware! We are put into a state of disassociation by a brain that knows cognitively what is better for us when we do not. Fibro fog is unavoidable and seemingly random. I am starting to believe it is really not random at all!

Do you think we escape through the fog?

img_0986-1~Kim

5 Frustrations with Fibromyalgia (by Caz at Invisibly Me)

This is Caz, she writes Invisibly Me… these are the top five frustrations most of us deal with. Many thanks, Caz for being my guest today! 


May is Fibromyalgia Awareness Month (with May 12th being awareness day). Today I thought I’d cover some of the frustrations with fibro. Okay, so the frustrations are potentially limitless, but I thought I’d pick just 5 to explore. Let’s not be greedy now! Perhaps you experience these too, or maybe they will help give an insight into life with this condition.

1. IT’S UNPREDICTABLE.

Plans are made to be broken with fibromyalgia. It’s a different experience for everyone, but you may have some tolerable days, maybe even some good days. You may have unpredictable flares that last anywhere between an hour to several weeks. You may have more unbearable days than you can count. I can’t tell you how I’ll feel in a few hours, let alone tomorrow or whether I’ll be able to follow through on plans for the next week. This can have a knock-on effect on mental health, relationships, friendships, social life (what social life?) and family. Just like with stoma problems and migraines, symptoms of fibromyalgia can be hugely unpredictable; it’s highly impractical, not to mention monumentally frustrating.

2. THERE’S NO CURE. 

Okay, so maybe we’ve already given up hope for a magic bullet of a cure, but it’s disheartening to think this situation is ongoing. It’s frustrating not finding things that can help symptoms, or prevent flares. There’s no cure, and there’s very little help for managing things from day to day. It’s hard to accept that when you just want to feel better and reclaim some semblance of the life you used to have, only to find there’s no way to ‘fix’ the problems, only manage the symptoms. I get frustrated feeling like I’m missing something, frustrated when doctors and specialists say it’s ‘all part and parcel of fibromyalgia’ and therefore nothing can be done. We have to advocate for ourselves and keep pushing if we think there’s more to the story, whether that’s another medication we want to try or other diagnoses/deficiencies alongside fibromyalgia that hasn’t been adequately investigated.

3. THE RELENTLESS CHRONIC PAIN & EXHAUSTION.

Exhaustion is overwhelming. It’s bone deep. Those with fibromyalgia and/or ME/CFS will likely know this all too well, that it’s just not being ‘tired’ or worn out. It’s shattered beyond belief. Brain fog and problems with concentration are part of this and are hugely frustrating; I find the inability to think clearly, make decisions, write, focus in general to be some of the most annoying issues, perhaps because I’ve always been more brain-oriented with writing/reading, rather than sports-oriented or hands-on with my interests. In addition to that, chronic pain can be a longtime companion, forever irritating in its relentlessness, bringing you to tears at times, making you question your ability to keep going.

4. ‘BUT YOU DON’T LOOK SICK’.

It’s an invisible illness. For the most part, we probably look fine. On the outside, we’ll put on a smile and try to keep going, showing the world what we want them to see. On the inside, we may be crumbling. It’s hard to be believed sometimes, by those around us or medical professionals. We can also worry too much about what we think others think. I find it incredibly difficult to use a public disabled toilet for this reason; I look fine and others must think I’m just jumping the queue of the normal toilets, rather than that I need this one because I have a stoma. I’ll be the first to give up my seat to someone else on the bus, and that’s expected as I look ‘fine’, and I won’t ask anyone else for a seat when it’s busy even if I’m in agony and about ready to fall over. It can be a very isolating experience.

5. I FEEL GUILTY. 

I feel guilty for so many parts of this experience. For not doing enough, for not achieving anything with my life. I feel guilty for losing my job due to stoma surgeries and that fibromyalgia changed the playing field once again to keep me out of work. I feel guilty not knowing where to go from here with money/jobs/career. I feel guilty for days when I just get by. I feel guilty for feeling frustrated or miserable about it when I know others have things much worse. I feel guilty for times when I smile.

A purple butterfly, the symbol for fibromyalgia.
The butterfly – The symbol representing fibromyalgia.

Caz at Invisiblyme.com

Death Must Be Faced

I planned on doing Fibromyalgia Awareness posts all this month, every Wednesday. It was a sound plan. Then my parent’s neighbor died, she was very ill. This was expected but when it happened it was still sad. About two days later… my uncle died. He, too, was very ill. In fact, he was in hospice care, his kidneys were shutting down and he opted not to receive treatment. He passed very quickly after that.

I had been planning to take a week and spend it at our family lake home. It was all planned. My health had been questionable for some time and I was hoping a change of pace would help me over the last hurdle. However, two funerals in one week were not planned.

How was I going to get through these funerals?

Would I get through these funerals?

How was I going to be of any use to my parents, who are elderly, during this week?

Would I be able to follow through or fail again on my plans?

When you have fibromyalgia you don’t get better. You never get better. Fibromyalgia is a chronic syndrome. We say illness or disease but it really is neither. Fibromyalgia is a syndrome because it has many contributing coexisting conditions. These coexisting conditions tend to be progressive, worsening over time. But fibromyalgia itself is not a progressive ‘illness.’ (I am not the ‘syndrome’ word police!) This progression of symptoms is very confusing to those of us with fibromyalgia. For the rest of you, it must seem like a damn soap opera!

[Scene: Betty and Jan are talking about their friend Laurie; camera pans to Betty.]

Betty: Then Laurie said she had Fibromyalgia Syndrome and Chronic Fatigue Syndrome. But now she calls the Chronic Fatigue Syndrome some weird word; mya-lgic- encepha-something?

Jan: Myalgic Encephalomyelitis.

Betty: Which is it!?!? And what does THAT word even mean? I swear she made that up! AND Laurie says she has depression, migraines, restless legs syndrome, and [whispering] bathroom problems … how can one person have that much wrong with them?

Jan: I know! Like, go get it fixed already! 

Betty: At least pick one thing. Jeeze!

[Betty and Jan roll their eyes and sigh, end scene.]

The truth is, WE DO have that much wrong with us and many times much more! Take a peek at this sweet little list of possible coexisting conditions!

So, how did I handle my week at our family lake home? I attended everything that was planned. I rested when I could for as long as I could. I wore my therapy belt and snacked on protein-rich foods. I did my fibro exercises. Basically, I went ‘old school.’ I treated my body just as I had right after I was diagnosed with Fibromyalgia. I was very aware of every ounce of energy I spent and was meticulous with my medication. I called my husband frequently. I continued to check in with my tribe for support and received it with a grateful heart. I made sure I was mindful every day of the beauty around me …

 

I made it!

Live your best life!

img_0749-1~Kim

Possible Prevention and Survival; the Inevitable Fibro Flare! (With Terri from Reclaiming H.O.P.E.)

“That’s where pre-planned recovery days come in. Whatever we call those days when we have to take it easy, I’d guess that most of us with fibromyalgia have taken them when we’re having a bad flare, but I’ve found pre-planned recovery days are extremely helpful as well. Whenever I’ve engaged in more activity…” [continue reading, Pre-Planned Recovery Days; One Key to Living Well with Fibromyalgia.]

“Your exit strategy.  First, this is unfortunate, now that you are through the intense pain, you will go through three days of wishing you could just take a pain pill to make it go away. Do NOT. This is how you get into trouble with pain medications. Just get through three days of feeling like crap after your flare ceases…” [continue reading, Exit Strategy, Three Days to Recover.]

  • Have you ever planned recovery days and/or exit strategies?
  • How do you deal with an increase in your symptoms?
  • Any tips, ideas for prevention or recovery? 

Many Thanks, Terri!

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The Slam Dunk Seven Symptoms of Fibromyalgia!

Fibromyalgia comes with so many symptoms and coexisting conditions it is difficult to know if you are suffering from issues directly related to fibromyalgia or a different illness. There are a few common symptoms of fibromyalgia that you can count on being by your side once you are diagnosed. Maybe not all, but here are The Slam Dunk Seven Symptoms;

  1. Pain.
  2. Fibro Flares.
  3. Fibro Fog.
  4. Depression.
  5. Headaches.
  6. Sensory Sensitivity.
  7. Digestive issues.

These seven are the slam dunk symptoms of what accompanies fibromyalgia. Let us be clear about these when we are asked about our disease. It gets messy when someone asks you to tell them what fibromyalgia is and you start listing off other chronic conditions and coexisting symptoms with your fibromyalgia symptoms. If we want to get the message out about Fibromyalgia Syndrome, list your Slam Dunk Seven Symptoms.

When you are asked specifically about your fibromyalgia symptoms stay on topic. This not only clears up the confusion, but it also shows you are knowledgeable about your disease. This goes for all types of chronic diseases. It gets confusing when you rattle off restless leg symptoms, rheumatoid arthritis symptoms, other pain symptoms, allergies, and all possible coexisting illnesses you have. These are no less important! These are illnesses you are battling right along with your fibromyalgia! When you are asked specifically about them that that is your invitation to spill more symptoms, as well as conditions.

We are continually researching and learning about our disease.  Things are changing as more attention is now being paid to this monster we call Fibromyalgia. What was once thought to be fiction is now fact. What was once called a “garbage can disease” is currently registered in the International Classification for Diseases Classification Manual with its very own diagnostic code, M79.9. Stay current! Knowledge is power and power affords us the ability to take charge of our fibromyalgia.

Live your best life!

IMG_0255~Kim

See more: Acceptance? Here’s Your Ticket!