Friday, April 28, 2017

Your Life IS Beauty- Guest Post By Nyssa Fellow INFJ

Nyssa is a fellow INFJ, who sometimes says phrases that have been the exact words in my soul. This is rare in my world. Incredibly rare. Maybe it is because both of us are autistic, have lyme disease and are INFJs? We share many aspects of Being that perhaps aid in making our minds so in sync. Even knowing this, I am still surprised at how eerily similar our thoughts can be. I recently had a post ready to go with almost the exact sentiments that Nyssa writes below, but  can admit that hers is more simply and eloquently written, so I asked permission to guest it. Her words are so beautiful, inspiring, and most importantly- true. I am also going to highlight the sentences that I want emphasis on but were not highlighted in her original post.

"Your Life is Beauty- BY Nyssa

All this is for you. Beauty is everywhere. In the cracks of walls, and broken statues, in the windowpane that leads the eyes to regard the splendour. Maybe there are flowers beyond the glass; buteven if there isn't even one, your mind can imagine. That's where life takes place with its characters, its passions and its heartaches; it all stands upon that stage which is yours, alone. 

Your mind and your heart warring like embattled lovers. The "I wants" with the "I haves" while a minor tragedy gets played out in those moments where you don't know what you stand for and with whom you stand. A million reasons to be outraged distracting you from the one thing you can control. Your play, with your characters, and your lines which can be flung out of your lips without thought for your heart or the heart of another; or can be brought lovingly forth with the thought, always being, my life is a creation from the Creator and therefore I will make of it something beautiful like the beauty that was made for me. My art (which is my life) will always and forever touch the lives of those who enter mine. 

The ant walking on your countertop, a reminder of summer's kiss that lands on you from the orb hanging in the sky that grows your flowers and caresses your skin with its warmth.

In the midst of a mad world, with anger and distaste; remember the moments you can order and form in a way that creates art from a life that might seem meaningless and cruel. 

 If he or if she doesn't see the shining sea that stretches throughout your being and they are not brave enough or kind enough to sail its seas; rewrite your story. 

And make it beautiful. 

If you find life to be colourless, the palette awaits you. Pick up the brush and paint your life. You know how to do it. You know what your eyes must take in, your ears must hear, and your heart must feel and your mind must make sense of it, all, telling the difference between what is desperation, a cloying yell from the part of you that is not coming from love but from greed and your heart that beats a bit faster from the joy that living from a wellspring of beauty can bring you. 

If you can not travel, open books and journey within your imagination which is another gift. If you can not be alone, savour the moments until solitude is yours. If you're lonely, reach out to the brokenhearted because their loneliness might be greater than yours. 

Most of all, look up and look in. That which created everything , created you, and gave you the gift of creation. 

Everyone is an artist.

The planet is the canvas, your life is the colour. Do it lovingly, but do it. 

Many lives are wasted, waiting."

Everyone is an artist- how beautiful is that sentiment? Rewrite your story, pick up that paint brush, change your focus or perspective, and GROW,  CHANGE, ACCEPT, BECOME, LOVE, and LIVE. Embody your truths. Bundle yourself and the world in kindness, boundaries and inspiration.

 Thank you Nyssa for putting my soul into words. xo

Song Choice: More I cannot Wish you ( Flash Episode version) 

Song Choice: Wish for you- Faith Hill "A setting sun that paints a tie-dyed sky, A feather bed, an ancient lullaby, A kiss good night from one whose love is true, That's the kind of day i wish for you. A field of flowers dancing in the spring, A little creek, a tree, an old rope swing, Cotton candy clouds against the blue, That's the kind of day i wish for you
First love with all its storm, Raging like fire within, Tossing your heart to chance , You swear the dance will never end. But then it does and someone says goodbye, And after all those empty nights you cried, The morning that you wake up good as new, That's the kind of day i wish for you..."

And I Hope you Dance by Leanne Womack: "I hope you never lose your sense of wonder, You get your fill to eat but always keep that hunger, May you never take one single breath for granted. god forbid love ever leave you empty handed, I hope you still feel small when you stand beside the ocean, Whenever one door closes I hope one more opens, Promise me that you'll give faith a fighting chance,And when you get the choice to sit it out or dance. I hope you dance....I hope you dance. I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Livin' might mean takin' chances but they're worth takin',, Lovin' might be a mistake but it's worth makin', Don't let some hell bent heart leave you bitter, When you come close to sellin' out reconsider, Give the heavens above more than just a passing glance, And when you get the choice to sit it out or dance. I hope you dance....I hope you dance. I hope you dance....I hope you dance. (Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)"

Tuesday, April 25, 2017

A Northern Girl- The Extreme Fluctuations of Weather and Life Up In the True, North, Strong and Free.

I woke to the branches and ground heavily coated with snow...again. These last two months have been teasing spring only to take it away swiftly with a few more days of winter. Normally, I love winter but this year was different. This year I needed sunshine and outdoor sounds to lift my soul.

The week before the onslaught of rain and snow, there were a few lovely days that were plus 14 degrees Celcius. One afternoon, I sat on my porch and took a video of the sounds, for my small group of faraway friends on Instagram. Even over the light buzzing of my smart phone, the sounds were still prominent. We live near a mini marsh area peppered with bulrushes. When it's warm, every night the loud croaking of hundreds of mini frogs can be heard in harmony. The crickets chirping join in next with the occasional clicking of the gophers punctuating their chorus. Canadian Geese honk occasionally when they land around the marshy ground for a quick swim. Birds twitter over the gulping frogs and next door our neighbouring wolf dog howls because her family went to do errands. She is such a baby for the huge dog that she is. I kind of adore that about her, because her howls make me feel that our family is placed in some western movie, with loads of space and not another soul in sight. I like to close my eyes while the sun warms my face and pretend we are completely isolated. I am one of those people who thrive on solitary confinement. It probably helps that I have my family and the computer world at times, because technically I am not solitary, but those moments, for awhile, I can pretend.

Alone but not lonely.

The warmer days were still morose and moody. The land was still budding and the repressive brown ruled. Yet even with that, it was a 'Wuthering Heights' sort of beauty. The grey skies matched my spirit of energy. When the sun did brighten the sky it became a deep hue of blue that stretched beyond the scope of the eye and the land would buzz with signs of awakening. We were not yet at the stage of buzzing bees, although a few flies came out, but the precious stirrings of new beginnings were hopeful. Awakening is always a beauty to behold.

And then it snowed. 

The north has a way of giving and taking so suddenly. I believe this gives the many inhabitants a live or die mentality of savouring quick goodness and seizing unexpected moments quickly. Also installing resilience in those that manage to change with the seasons, or heck, the day to day. Sometimes I think life would be easier if we moved south. I can't imagine having a steady stream of seasonal change without a lot of influx of snow. The snow held off until December for us this year, and life was SO much easier. I had never realized that snow was such an obstacle in our wintering. The cold weather came without precipitation and walking places, driving, and going about life was less time consuming and took less energy. Maybe I would do better in a place without the snow factor? I like the four seasons and the beauty of the wild is something I cherish, but as these bones of mine get older (lol I sound SO old) cold is becoming a great hindering aspect of thriving. But maybe that is my Lyme or Anemia or even Mono? If I am at a certain temperature I have the least amount of symptoms. For some reason my temperature window is about 15 degrees Celsius to 25 degrees Celsius. Above that and I feel sick from being too hot and below I get chilled. Although, if I get to be inside, I don't mind our -30C days if I can crank my inside heat to +24C and go out for quick, vehicle heated errands. 

All of our lives depend on weather, but especially in places that are so prone to change. Every day we check because every day the weather forecast is a bit wrong for the next day, and our plans are dependant. The wind is also a huge factor. Because of our proximity to the great Rockies, our wind gusts can often be over the speed of a car on a highway.

My husband thinks that I am a reflection of the weather. He says it matches my moody, change by the moment, wild yet tame, full of surprises personality. Maybe that is part of the reason why I won't move south. I do have a kindred spirit to this land of mine. I also feel the changes in my body even if the weather man disagrees... I am usually the right one. 

The night before the snow, I felt achy and sick. I knew it was coming. I woke earlier because the room was brighter and knew without looking that the ground was covered. At first I groaned that the snow dare to show up and make my symptoms worse after the sun was beginning to heal. I was angry also that I was awake because with mono, every minute of sleep tastes like chocolate. But after my initial moaning and groaning, I actually looked out my window for the beauty. And there it was (pictured below), in all it's gently swirling whiteness.

I was nervous for the buds that were beginning to bloom but I realized they are probably as hardy as the other inhabitants here, and besides, there was nothing to do but embrace what IS. So I did. The sky was so white that after awhile my eyes became blurry but I still stared with wonder at the heavy white, contrasted occasionally with a brown fence or a heavily burdened evergreen. It's a cold sort of beauty. Another quality my husband says I can be until I am occasionally full of warmth for a few moments of sappy goodness. I thought about this and smiled.

So this is my life?...

Ok, yes, this is mine and this is what I will do with it today...

I will turn on all my twinkle lights and fireplaces in Anam Cara. I will Hygge the entire house. And I will send out my children, bundled and pale to play in the piles of snow until they come in red cheeked and renewed. We will drink tea. We will play Christmas music even though it is almost May. In fact, I will blast it out our back window while they play because life is short. Because this IS what IS here, right NOW. Nothing is linear where I live. Like the weather, nothing is predictable, and maybe living here teaches these lessons in embracing, giving, dealing, thriving, or just getting by with acceptance? Perhaps more than most places? Or maybe that is just my persona putting it's own self into the land? Or a mix of both?

""Northern Girl" By Terri Clark

"Grew up drivin' on black ice
Spinnin' in circles under Northern lights
Laughter steamin', small town dreamin'
Digging tunnels in the deep snow
Sheltered from the shiver of a ten below
And I'm right at home

I'm a Northern girl, wild and free
I've got four strong winds to carry me
I've been East to West and all around the world
But I'll always be a Northern girl

Little cottage on a big lake
Sunshine would be a shame to waste
Warm days won't last - come and go fast
Bonfire in the moonlight
People I've known all of my life
That's where I belong

I'm a Northern girl, wild and free
I've got four strong winds to carry me
I've been East to West and all around the world
But I'll always be a Northern girl

Where I come from
What I'm made of
Where I wanna be
You can take me out of there
But you can't take it out of me

Northern girl, wild and free
I've got four strong winds to carry me
I've been East to West and all around the world
But I'll always be a Northern girl

I'm a Northern girl
True North, strong and free
Carry me
I'm a Northern girl"

I am a northern girl, wild and free with four strong winds to carry me...It's in me and I am in it. This is who I am and although I may complain at times, and it brings it's share of pain, it also brings great depth, freedom, raw strength and beauty. True, North, Strong and Free. 
Song Choice: Northern Girl- Terri Clark

Saturday, April 8, 2017

Having Mono at 33 With Chronic Conditions, Grace and Frankie, Celebrating LIFE, and 'Gettin' To Livin''

I knew something wasn't right. In February our family had a bought with Strep. Of course, being Strep, all of us were incredibly run down. My daughter and I seemed to be specifically exhausted. I thought it was just because we were taking longer to heal. But then, my normally bouncy Extrovert would often come up to me during the day and lean her head against my chest and just stand there. She would want extra snuggles. She asked to lie down...which was a shocker to me because this gal stopped napping at nine months old. She is the one who never wants to sleep for fear of missing out. She was the one who originally gave me sleep deprivation and even when she's sick she rarely naps. Something was very wrong.

A friend mentioned Mono and I thought about it, but didn't want to add another "diagnosis" to our seemingly "collector conditions." But after a month of her being off and complications of more strep and constant sore voice and throat for her, I took her in. The first doctor in Emerg swabbed her for yet another bought of Strep (even though she finished antibiotics for the first four weeks ago) but didn't test for Mono because they said it was unlikely. So I booked her into the clinic. We were at emergency because I thought her throat was closing up - it was so visibly I didn't push blood tests at that time. At the clinic I made my argument and as an afterthought I asked to also be tested. The doctor said I looked pretty good for someone who would have low Ferritin AND Mono but she allowed me to be tested anyway. It is typical for me to present symptoms differently. I can look like I am functioning well and be very sick.

The next day we were visiting the therapist and he gave us our results with, "Your family is always full of surprises." Both of us were positive for Mono and my Ferritin had dropped one more point to a three. My first thought was, "Of course it's positive...of course I have Mono...why not? I seem to have everything else!" Followed by a deep urge to laugh (which I did later.) He asked if I had been feeling especially exhausted and I shrugged and said, "Exhaustion is my normal...not too much more than usual..." Because I am so used to being tired, and every day is hard for me because of this fact, I don't like to mention it in daily conversation. Everyone says they are tired. I didn't want to join the masses of complaining even if I had a legit reason. I want to LIVE my life. I know I make generally good choices to combat being busy ect. so I am not one of those people who are tired because I over schedule myself. I am tired because of my bodily conditions and I dislike drawing attention to this fact unless I need support or am writing a blog post. He replied to my daily tired statement, "With a ferritin of three being tired is pretty typical." But then as my thoughts caught up to me I realized the ridiculousness of my statement. I was WIPED. But technically this therapy appointment was not for me, so I moved on and concentrated on my hubby.

I can't believe I am 33 and have Mono. I have never had it before actually which is a shocker considering the fact that my body tends to be a breeding ground for all things depleting. Looking back on the last month it makes a lot of sense. I forgot that every night I felt like I was dying. I was scared to go to sleep because I thought I may never wake up and I wasn't sure I wanted to because sleep seemed like the most beautiful concept in the world. I also had these "hot flashes." I thought my hormones were going crazy. Turns out these were night sweats and typical with Mono. I am a person who is always cold. I am never hot, so this was a new fresh hell for me. At night I would strip off layers but in the morning I would, once again, wake up freezing. I was always so thirsty, especially at night when I had the fevers and I would constantly wake to headaches and nightmares. I took my temperature the other night and found out that indeed, I was also suffering fevers, which in hindsight explains a lot from last month. I wish I knew then...
(I also kept wondering why I had puffy eyes like in this picture-turns out they are also a symptom.)

Then there was the need to nap. I am like my daughter. I only nap if I just had a baby, have the flu or if I have a very bad time of the month (with low ferritin the heavy bleeding does me in.) I was napping after city trips and falling asleep when I would lie down on the couch...and the sleep felt like it was never enough. When the annual time/ clocks changed, I thought I was sleeping until eleven because I couldn't adjust. Yet, this sleep didn't feel like enough either. I felt like a teen again. I thought it was odd that I was sleeping the mornings away in the Spring, when usually that is when I prefer to wake earlier. My neck was also constantly swollen but I thought it was my lower thyroid nodule somehow affecting the lymph system higher up. My upper left abdomen was constantly hurting (which I brushed off as my annoying Lyme stuff) and my muscles were even more sore than usual after a walk ( again I thought it could be another Lyme flare.)

The problem with having chronic conditions, is that when you are sick it is tough to know if it should just be brushed off as a flare up or be checked for something additional or a run of the mill illness. I find that I have to be constantly in tune with my system. Every morning and evening I do regular "scans" of my bodily functions. It's what a person with chronic illness has to do to survive. I am eerily in tune with my body. I knew that if my daughter was positive for Mono, I would be too (because it is my lot in life to catch I drink out of her water- yup whoops) and thus I am glad I pushed for my own blood work. Even if there is no treatment for Mono, it is good to know one is not going crazy with new symptoms and there is a solid reason for additional suffering. I am making my husband and son do testing next week because they have also been run down. My husband missed a week of work last month and I thought it was due to grief, but now I need to rule out of it was more or not...

Here is the kicker of this though. I was JUST getting myself back on track with life goals, health foods, and regular exercise. My physiotherapist rotated my hip back into place four weeks ago and I have not been the same since. I am often in pain, and if I would have known I had Mono, I would have been even more insistent that she leave my hip as it was. Walking is such a pain now and I hope that my slowly healing body will eventually adjust. I feel like I am eighty- but even that is not right because I watch the eighty year old women next to me in physiotherapy and they do BETTER than me. I often have to stifle giggles at my apparent weakness and their strength. Those older people are amazing. Plus, one of my favourite shows "Grace and Frankie" is about two close to 80 year olds who are gorgeous, fun, stunning and living life well. My husband often says both Grace and Frankie remind him of me in personality. He said it's odd because it is like the two sides of my personality and the conversations I regularly have, are mimicked between both ladies and they say and do EXACT things I have said and done. It is uncanny, the similarities. I can relate to both of them very heavily even though they are both very different. My put together, controlled, socially aware self is Grace, and my hippie, uncontrolled, boho spirited self is Frankie...but I WISH I had their energy and bodies! I would seriously trade places with women who are decades older than me. So thus, I realize this isn't about age.

Dolly Parton is another older woman I deeply admire. Her attitude, her energy, and her body exude joy and embody the spirit I want for life. Her song "Better Get To Livin'" always reminds me of my priorities. I do many things "right." I have researched diet and follow a mix of Weston Price and Mediterranean and GAP (depending on needs.) I go to physiotherapy even though I hate it. I force myself to walk because my weight has gone up despite eating well. I consume the right minerals and vitamins, I have low toxicity in my environment and the people that I surround myself with, I practice forgiveness, I have healthy boundaries and engage in beautiful moments with my loved ones. I steep myself in gratitude daily. I seriously love my life even with these conditions and we have a healthy amount of Hygge going on in our home too. Despite all of this, in the end, I have to engage in the GRACE to ACCEPT that this is my life. And I better get to LIVIN' in whatever condition I can show up in. I am doing my best. Life still happens even when you are taking empowering steps to live well. Some people look at this as depressing, and sometimes I admit I feel a bit depressed about it. That is normal and ok. But on most days, I realize that my dark circles are a winning mark of showing up and also a reminder that it is also ok sometimes to NOT show up. "Life's a dance you learn as you go, sometimes you lead and sometimes you follow, don't worry about what you don't know, life's a dance you learn as you go."- John Michael Montgomery

So my weight may be a few sizes larger than I normally prefer again, but I'm still beautiful in my own way. I may have dark circles that require a daily triple application of make up- but am I not lucky enough to have that make up in the first place? And hey, I'm still holding myself up and that is something! I am willing to make a better way and not sweat the small stuff, and still there are things that hurt. Luckily, Mono gets better which is more than I can say about my Ferritin or Lyme. My husband is slowly being healed through therapy and meds and we live in a time where this is a possibility. We are also a family lucky enough to have a therapist who used to be a practicing surgeon and family doctor, so he can help us with all of our myriad of issues. And he also finds us fascinating and fun... I think that's pretty awesome. I have more support than most people who suffer a lot more than I do, and so I refuse not to shine when I can. Sure, some days I feel like I'm a train wreck, but in general, I am in awe of this pretty amazing life I get to have despite all the hardships. What's even better is that I am considered "disabled" and in ways I am...I am considered a odd member of society which I wouldn't change for the world, even though I would change MANY aspects of society, and I think that those very mental differences are what enable me to be this positive during life trials. Of course I feel depression at times and sadness and frustration- I accept normal human frailty and emotion...but my point is, that I don't wish to wallow in them for long unless I am in a depression and then I allow myself to feel that too. Each expression is legitimate...if you are in a pessimistic phase right now, I have other posts on that and that is ok too.

Yes! I like to have reasons for feeling crappy but those reasons are not excuses to get in the way of living my best life. They are simply inner understanding for limits, boundaries and love. Even if that best life means napping more, sometimes being confined to bed, and regularly releasing pain. I am still alive and that deserves a bit of celebration. It also can be extremely painful, and I don't want to minimize that, but I have other posts on that...In this post I want to say...I am still worthy because I exist. I am still a beauty even if I do not meet the standards for typical beauty. I am still a member of the human race even if I relate more to alien life. I am still ME even if I was unable to do anything. Ableness does not equal can but it's not everything. What I believe in fighting for- is worthiness and BEING...for you, for my children, for my loved ones, for the world, and for myself.

"Come on sing it- oh it feels so good to be alive...Living your life in this quick moment, and you never ever think its gonna go away but I'm here to say, yea I got things to do, yea I got mountains to move...feels good don't it? You've only got one life -live in the moment."- Meghan Trainor.

My mountains may be just getting out of bed, recovering after a shower, forcing myself to walk with my kids, balancing my hubby, or making sure that my children feel my attention even if I don't have a lot of it. Moving mountains does not mean you have to make a large mark on the world, or be a "normal, contributing member of society." Find your specific mountains and celebrate your unique movement of them. Because you are HERE NOW and ALIVE and this is enough for me to applaud your existence. You have worth. It may show up differently but your worth, simply from existence, is there!

With Love and Celebration;

Song Choices: Life's A Dance- John Michael Montgomery (, Better Get To Livin'- Dolly Parton (, Good to Be Alive Meghan Trainor (

Skip the intro and go to the one minute mark for the song: