Fibro: Never Underestimate the Ability of Others to Push All Your Buttons

I pretty much live the life of a recluse, quiet and alone with cats and birds in the forest as my main company.

I had to go to the dentist to get my dentures relined so they can stop cutting my gums up. We drove 45 minutes (which felt like hours and hours thanks to ADD)! By the time we got there my stomach was clenched, my head ached and my entire body was throbbing from the tense muscles (thanks fibro)!


I get into the dentist chair, where I am informed that I will only be assessed and will have to come back to get the dentures fixed. This is contrary to what I was promised on the phone when I made the appointment. I felt myself immediately get real hot with anger but held it in check so I wouldn’t make a scene. Apparently I’m not that good of an actress because everyone immediately started apologizing for the “miscommunication”….pissed me off even further!


Then, after taking a 36o degree X-ray of my empty mouth, the dentist says I need to go see the denturist guy so he can determine if he needs an impression of my mouth or if he can remove the crusty old liner that’s cutting my gums and just work directly with the dentures. SERIOUSLY!!! Why do we have to spend needless time and money in a dentist office! So friggin’ aggravating these money grubbing scam people! Also, I had to pay $130.00 because my dental insurance gave me the wrong account number so the direct billing didn’t go through. Now I get to yell at them too….oh joy!


So, I finally find my way to this denturist office despite the crappy directions from the people at the dentist office. I go in, the guy takes my teeth, scraps away the nasty sharp pieces of crust and says he can work with the dentures, no need for a new impression and the dentist office will contact me to set up a new appointment. AAAARRRRRGGGG! I AM SO DONE WITH THIS…HOME I GO, RIGHT NOW!


By the time I get home the dentist office had already left a message saying they could fit me in tomorrow if I still want to get my dentures relined. After having explained to ALL of them that I live out of town, hubby has to take the day off from work to bring me in, I am in severe pain etc.etc.etc. Now, I have to wait until the hubby has a day off, sometime in early June, before I can get this done. I am so tired and empty and sad.


So, to sum it up, I left my tranquil home at 7:15 AM and got home 3 Hours Later! By 11:30 I crashed on the couch and woke up at 1:30 in the afternoon, just in time to head out to the doctors office for the results of my blood tests. And I have another day just like this one to look forward to sometime in June. 

Oh Joy oh Bliss

Fibro: 

As a result of physical and mental abuse in my childhood, along with trauma, my memory is unreliable at best. All thoughts are mixed together in a big, twirling ball that I have to constantly pick at until something becomes retrievable and sensible.

Basically, it is one hot mess in there. Along with ADD, PTSD and fibromyalgia, my life pretty well has come to a standstill.

Thanks to ADD, my perception of time is completely off kilter…what seems like 60 seconds to regular brain seems to an eternal half hour to me (and others with ADD). Or, when I am doing anything that completely delights and engages me, an hour is just a quick second. People hate it! It doesn’t seem odd to me, because I cannot remember time being any other way.

I have great difficulty remembering people, places, events (good or bad). I remember odd, random and inconsequential things that have very little or nothing at all to circumstances and conversations that I may be engaged in at any given moment. 


I have a useless talent: I can remember a song, even if I only heard it once, even if I only knew it as a child, even if I didn’t like it when I heard it. I will know the tune and the lyrics🎤🎸🎼🎹🎷🎺🎻

I am someone that enjoys singing, as long as no is watching me or listening to me. I sing karaoke alone, early in the morning when no one is awake and I know they can hear me.

I love to sing duets with people I will never meet nor will they ever see me because I do not use the video option on the Smule Sing! app. I feel anonymous enough this way to keep any focus off of me. I’m not a power singer, I can sing in tune and I have enough “followers” that like my sound to feel encouraged. 

Silly me.😜

Fibro: Music Therapy Follow Up

On Feb. 2, 2016 I posted about my version of music therapy would be😄. I downloaded a great karaoke app by Smule called Sing!, which is free to use as long as you are willing to sing duets with strangers (which I most definitely am).

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In 55 days I have sung 268 duets with strangers from all over the world.

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Keep in mind that I have never sung in front of people because I feel way too insecure and rejection is not my thing. When I was very young I belonged to the school Glee Club. The teacher once gave me a solo to perform at a concert. I went on stage, opened my mouth and not a sound came forth….terrified and mortified, I was filled with shame and left the stage, never to attempt performing again😕

I digress. Singing with this karaoke app does not bother me in the least. It doesn’t seem to bother those I sing with either for they invite me to sing along in other songs continually. This makes me happy.

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The most important point to this point is: IT WORKS! The despondency I was feeling has lifted. The flare-ups have lessened in frequency AND intensity. I sing a few songs every morning, even when I don’t feel particularly musical (which must suck for those that listen).

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There are some fantastic singers using this app and there are some equally horrible singers that are completely tone-deaf. My choices for partners are the ones that fall between those 2 extremes, they can carry a tune and their sound complements my tone of voice. This makes it easier to harmonize and doesn’t hurt the ears so much.

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I sing my blues away, love doing it and will continue to do it, even if I have to sing every single day for the rest of my life.

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I recommend this to everyone that is having trouble getting through the depression that plagues chronic pain sufferers. Raise your voices as a way to help your brain produce those much-needed endorphins, whether you take antidepressants or not.

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Fibro: Losing Interest

I read a report the other about the latest research for fibromyalgia. It said that past research had convinced them fibromyalgia was a nerve problem sending pain messages to the brain. This new report says it’s blood vessels; a whole new area to look into and experiment with.

To be perfectly blunt I am not impressed, nor excited about anything that may happen with this new research path.

The only thing that will excite me now is A CURE!!!

I am tired of trying new meds, new alternative methods to control pain, etc.

I just want the pain to be GONE!

That’s it. I can only control my state of mind but not the pain. The pain is ALWAYS THERE and flares up whenever it wants to, with no apparent help from me or my environment. My only strength is my mind and whether I have the fortitude to push through the pain so I can have some semblance of a life💩.

It sucks as a way to live but it is my only option.

So, researchers….publish your cure and be done with it already😁

Fibro: Fragile Handle With Care

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Hands down, my heart is the most fragile of all.

So many things hurt physically, but the most painful of all is when someone touches my heart.

Funny how we put all kinds of protections in place to prevent the pain of such heartache, yet no one actually is successful at it.

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While they say time will heal a broken heart, I have learned over the years it is false. Your heart does not completely heal when your heart is broken by someone irreplaceable in your life, like your mother, father,sister/brother and so on. We think when we lose a lover the pain will never end, but it does. Because lovers are replaceable and that memory can fade over time.

Fibro: Chronic Pain Anthem

This song should be the soundtrack playing for all chronic pain sufferers! Listen and be touched😄

Rise Up by Andra Day, fantastic❤️

http://youtu.be/8BWsrd_aXQA

“Rise Up”

You’re broken down and tired
Of living life on a merry-go-round
And you can’t find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
And I’ll rise up
High like the waves
I’ll rise up
In spite of the ache
I’ll rise up
And I’ll do it a thousands times again
For you [x4]

When the silence isn’t quiet
And it feels like it’s getting hard to breathe
And I know you feel like dying
But I promise we’ll take the world to its feet
And move mountains
We gonna walk it out
And move mountains
And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
For you [x4]

All we need, all we need is hope
And for that we have each other
And for that we have each other
We will rise
We will rise
We’ll rise, ohh ohhh
We’ll rise

I’ll rise up
Rise like the day
I’ll rise up
In spite of the ache
I will rise a thousands times again
And we’ll rise up
Rise like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousands times again
For you ohhhh ohhh ohh ohhh ohh [x3]

Thursday’s Tale: 2 Eyed Seeing

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Two-Eyed Seeing was introduced in 2004 by a Mi’kmaq elder as a way to integrate all knowledge from both Native and Western cultures.

The concept is to see through one eye with the knowledge and ways of the natives, while at the same time using the other eye to see with to ways and knowledge of the white settlers. Using “both eyes” together for the benefit of all, ensure to do no harm.

In order to use best use this concept one must be able to find better ways to do things using the best of both worlds.

This concept, although not seemingly revolutionary, is now being applied in education, science, health and socialization.

I have tried to do this my whole life, however, my actual knowledge of mi’kmaq ways was woefully lacking, so my outlook was skewed and out of balance.

Now, at the age of 60, I find myself voluntarily sequestered so I can learn with minimum distraction.

Learning is a lifelong activity, right up to the second you die. If you stop learning, what are you doing instead?

Fibro: Chronic Sinus Infections

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Yup, that’s right, one more thing to add to the endless list of crap we need to control is that constant drip of your sinuses irritating the back of your throat/nose. My actual nose is usually very dry, not runny.

Always feels like there’s a bunch of cotton stuffed up behind my nose/eyes, constant drip of mucous, stuffy ears, depending on which side of my head was tilted the most during my short night of sleep, and the constant blowing of the nose!

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Lot course, this sinus infection does NOT affect my hypersensitive sense of smell, oh no, that would be just too much goodness for me😷

I just get to swallow mucous all day long, choke on it in the morning and after I’ve laid down for a bit. Good times😜

Sinusitis Elephant

Sinusitis Elephant

Seriously, though, chronic sinus infection is one of the earliest symptoms of fibromyalgia. It is yeast infections. After ruling out all the meds for infections, allergies and so on, and you are still left with ongoing mucous problems, well, then a doctor should be looking to add it the growing list of pain you feel in order to diagnose you properly with Fibro.

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There is also myofascial sinus, which is when the thin layer of connective tissue that covers,supports and connects muscle cells,muscle fibres and the whole muscle…well, the whole support network that gives the body it’s shape and determines flexibility. It means, literally, tiny contraction knots. Healing occurs during Delta sleep, where cell reparation occurs. No Delta sleep, no repair.

What this means for you is constant fluid backs up in the sinuses which causes constant post nasal drip while your nose remains dry. This sinus blockage can change from side to side as you turn in bed.

Sometimes warm salt water used as nose drops before bed helps to lessen the nighttime sinus sloshing. Sometimes controlling the amount  of yeast in your diet helps keep the balance of yeast in your body under control.

I use a 24 hour allergy pill to keep the post nasal drip from choking me. I blow my nose a lot to help keep the sinuses from choking me.

This sinus problem was one of the very first things I went to the doctor with, way back in my 20’s, in the late 1970’s, early 1980’s. Stone Age times LOL

Thursday’s Tale: Truth and Reconciliation

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It has been many years now that the government ordered the Truth and Reconciliation Commission, which finally published its official document in December 2015….last year! It is 536 pages with 94 calls to action/recommendations to redress the LEGACY of the Residential Schools,the Genocide that Canada ordered on the Native Peoples of our country, and to advance the process of reconciliation. It is free to print off any or parts of this 536 page document, which can be found at http://www.trc.ca

This document determined the LEGACY, which is divided into 5 categories: Child Welfare, Education, Language and Culture, Health, Justice. The RECONCILIATION lists the 94 recommendations.

So, they have given the natives the platforms to tell their truths, the horrendous, devastating crimes that were committed against them. They have recorded those stories to make them “truth”. Now they have produced 2 books on how to “reconcile”. Read it and weep.

The definition of reconcile means to find a way in which 2 opposing situations or beliefs can agree and coexist. It means to restore, coexist in harmony and compatibility, consistently with one another by allowing what has begun to be completed.

I am not so sure the “reconciliation” part is feasible. Not only is the “truth” part devastating to behold, it is still questioned by many bearing witness to the telling of the blatant abandon of humanity with which they were treated. People find it difficult to believe their own beloved family members could have been responsible in any way for the horror heaped upon our Canadian First Nation people.

Plus, I find myself full of horror, anger and an immeasurable about of pain and sadness after bearing witness to just a handful of these testimonies.

I am not entirely sure I actually want a reconciliation. When I find myself filled with anger, I want revenge. I want to cause pain. I am full of hatred.

Then, when the pain and sadness take over, I am just full of distrust.

Can I be blamed for that, when my experience and those of my people has been such that time and time again, what appears to be friendly gestures, are really acts of aggression? Is it not human nature to distrust that which has hurt you so much?

Not everyone is ready to forgive. How many decades will it take to heal this nation? The official answer is 117 years of dedicated, continuous work is required to accomplish all the 94 calls to action.

Best get crackin’ don’t you think.

Fibro: Allodynia

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Do you find it extremely difficult to perform easy, ordinary, everyday tasks? You know the kind of simple things everyone else seem to do without even thinking about it?

Man in Shower, "Too hot, too cold."

Man in Shower, “Too hot, too cold.”

Like, showering: does hot water make you feel dizzy and weak? If you turn down the hot water and make the shower cooler, do you start to shiver uncontrollably? Does the intensity of the shower water hitting your skin feel like a thousand needles piercing your skin? Do you find you have an overwhelming need to sit down before you have finished washing, your energy depleted by the vigorous motion required to wash your hair and body? Are your arms tired and achey before your done? Drying/styling your hair seems insurmountable with tires weak arms? I am able to shower only once a week😤

One size fits all.

One size fits all.

Does dressing become a lesson in planning? Too many clothes, not enough clothes become regretful decisions because you quickly become too hot or too cold. A gentle breeze feel like a nor’easter wind? Waistbands, bra straps,elasticity in the socks, rough fabrics, tags…all sources of intense pain? Mostly I dress in loose sweats, multi-layers,soft and unattractive clothes.👖👚

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Does talking on the phone or in person become so difficult you are searching for your words? Does brain fog deplete all of your ability to focus on a simple conversion? Easily distracted? Easily confused? So frustrated you feel like smacking yourself upside your head? Does your arm/shoulder immediately begin to ache while holding the phone up to your ear? I rarely answer the phone and I try to do all my business online.📞☎️

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Do you immediately become anxious at the thought of driving yourself somewhere? Do you forget where your going or how to get there? Do you feel like it is impossible to complete all the simple things required while driving? Does that multi-tasking provoke some intense anxiety? I have not driven myself anywhere that takes longer than a few minutes. 🚘

All of these things people take for granted become so insurmountable for chronic pain sufferers. I feel like I’m trying to scale mountains most days. 🗻

All semblance of independence goes right out the window. Allodynia takes your abilities away, leaving you wondering “WTF???!!!” 🤔

You are not going crazy, it is real. 😜

Here is the definition of allodynia:

Allodynia is a clinical feature of many painful conditions, such as neuropathies, complex regional pain syndrome, postherpetic neuralgia, fibromyalgia, and migraine. Allodynia may also be caused by some populations of stem cells used to treat nerve damage including spinal cord injury.

‎Types – ‎Causes – ‎Pathophysiology – ‎Treatment

 

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