Life of the Party!

Saturday afternoon, and it's quietly raining out in the country.  The boys are downstairs playing video games, and I'm keeping an eye on my newly spayed & neutered puppies.  The laundry machine is clanking away, and a local Bluejay has taken it upon himself to make our balcony to be HIS territory.  As I type this, I am watching him strut his stuff around. He knows he's got the stuff!

My soon to be husband is out in his own personal playground, taking care of business out at the golf course.

I find myself feeling mischievous today, and have a desire to have some fun.  I have been daydreaming about learning to play the electric guitar and writing my own punkrock song.  I would write a punkrock song about quiet rainy afternoons in the country.  It would go something like...

"WE COULD MAKE THIS RAIN MORE RAINY....

SO JUST STOP BEING SO COMPLAINEY....

IT COULD BE WORSE, NOW DON'T MISTAKE ME....

PUPPIES AINT NEVER GONNA HAVE NO BABIES...

BLUEJAYS BETTER NOT BE SPREADING RABIES..."

 or.. something like that.

The personal lesson I achieved from the writing of this epic song?  Some days (No... everyday) a gal just needs to be the life of her own party!

Some days are like that..

Today I woke up with a migraine. Some days are like that.  I blame it on the weather & Methotrexate. For those of you who don't know what Methotrexate is CLICK HERE.

I take my Methotrexate via injection every Wednesday.  Today it hurt. Usually it's fine, but today for some reason I just wasn't into it. The thing is though, I want to have a better attitude when it comes to taking my medicine.  But I've noticed things, like my hair is turning brittle and has been falling out in clumps.

How do I feel about this?

Sad.  Yes, I feel sad about that.

And yet, I also feel pride.  Because I know that living an amazing life has nothing to do with the status of my hair.  I feel so shallow even writing about feeling sad over... hair.

There are so many other incredible problems I could be having, so yucky hair is totally minor.

On my walk in the woods today, I met the neighbor! I've been trying to run into the neighbor for months now, and today was the day I finally did.  She has invited me to tea, and I MUST take her up on that.

See... already on to the good stuff!

Medicority versus Simplicity

Wandering in the woods today, and was lost in thinking about my life and how I'm living it.  As of late, I feel I have been blessed beyond abundance with the ability to enjoy the simple things in life.  I have spent the past several months, purging, cleaning, re-purposing & donating all sorts of items in my house.  The journey has been quite therapeutic in that it's allowed me to be present with the 'things' left in my life. I am no longer distracted by the 'clutter' and business of my environment. 

Not only has my environment been simplified, so to has my daily routine.  I take pleasure in the routine of daily house chores, walking the puppies, morning meditations, giving my best effort at work & savoring quality time with my family & friends.

Now... enters my left brain that says, "You should be doing more with your life. You are living mediocrity. You should have written a book by now. You should be making a bigger impact on the world...."

Should I?

I meditated on these things whilst in the woods today, and for quite some time. I've come to the conclusion that I am actually truly LIVING my life.  When I am present, and have fully arrived to the abundance of this moment, I am 'living'.

I do believe that I could be doing more to 'share' the goodness that flows from my life.  I do believe that in the process of 'healing' from sickness, I've hidden parts of myself away.  I had originally started this blog initially as a way to 'make a difference', and I think I put way to much pressure on myself. 

I've decided I'm just going to be me & write about my daily experiences, because that in itself is worthy to note. I live a very fortunate life, which I have masterfully created.

As so let the journey begin.

Myositis - A snapshot of my journey

I'm very fortunate that I got sick in an age where I can connect with people all over the world who have the same condition that I have.   I wanted to share some of the blurbs I posted in the support groups to give an idea of the journey I've been on the past few months. I left out the other peoples comments obviously out of respect for their privacy. My blurbs give a snapshot of the journey I've been on since September 2015.

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SEPTEMBER 23, 2015

Is it normal to take Methotrexate only once a week in a high dose?

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SEPTEMBER 25, 2015

I don't want to have this crappy disease! I don't want to be on all of this medication. I'm really mad! I hate what these meds are doing to me almost as much as what's happening to my body. I'm humiliated by the fact my fiance has to help me get dressed and get in & out of the tub. What is wrong with me? I can't push myself out of bed, I can't even do my hair. I want to cry. And I'm tired of appointments, and tests, and needles.. I'm so done with the bloody needles! And doctors ... Who don't look me in the eye... That makes even madder! Just keeping it real. My usual way I cope with anger is to run 10km... So I'm mad I can't even do that!? Anyone care to share how they cope in healthy ways with anger? (I don't drink, drug, eat crappy food, and I don't want to take it out on someone else) I don't want to stuff or ignore these feelings.... I just am at a loss as to how to get all of this anger out, as I can't default to my usual exercise method. Thanks for reading.

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SEPTEMBER 27, 2015

Ok.. So I'm in Subway yesterday, and had a weird experience! I had this young boy make me a wrap, and in my 8 years of Subway it was the worst wrap I've ever had, I took one bite & it fell apart! I began to sob! I was so mad at that kid... OVER A WRAP! I ended up laughing at myself. I talked to my Mom, she suggested perhaps its 'steroid rage'? Anyone else experience this sort of thing? (They lovingly made me a new wrap by the way.. People are awesome)

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SEPTEMBER 28, 2015

I just got 8 hours of sleep! In a row!

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SEPTEMBER 29, 2015

Good morning everyone! I wanted to introduce myself. My name is Toni-Lee & I hail from Canada. I am 39 years old. I live on a beautiful acreage in Central Alberta. I started experiencing DM symptoms in the middle of the summer & it got extreme after going to Mexico. At first I thought it was just a really weird Mexican virus. The doctors started tossing around the word 'Dermatomyositis' and I had to practice saying it 30 times before I got it right. I'm still in the process of waiting for a confirmatory muscle biopsy, but the Rhuematologist has started me on Methotrexate, along with Prednisone. He wants to put me in RITUXAN (I'm just in process if trying to that drug covered by my insurance). It's been a scary ride, as I'm a proud career woman, and I'm now on medical EI. My fiance has a golf course, and I can't operate the equipment at the moment. On the plus side, I've dropped 10lbs of the fluid my body has been holding onto! I've gone off the deep end where my food is concerned.. Crazy juicing, salads, homemade soups. NOTHING processed, sugary or crap is getting into my body. It's helping.. I can feel it. I can get around allot better today, but seem to hit a brick wall about 4:00 pm. They did a CT scan, and some of my lymph nodes are swollen, so am also in the process of being tested for cancer. (Canadian health care is free... But it's a looooong wait) so I'm doing my best to live inside the moment. I'm grateful for these groups as they've been really helpful in understanding what's going on (on so many levels). I'm the type of person who is over the top happy & I am focusing on vibrating in a space of love & above. I truly believe I can't afford to delve into resentment or self pity... If I'm going to get better I'm putting all of my focus on gratitude & kindness. I don't want to go through this and end up with ruined relationships because I was being a jerk. Plus I find it inspires people to help move things along with all of the appointments & tests that need to be arranged (which is a full time job on its own). Don't get me wrong... I've had huge snot bubbling cries, but they always leave my face swollen with Edema.. EWWW! Thanks for letting me be a part of this group .. It helps to know I'm not really '5.5 in a million' (stats on how many 
people get DM.

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SEPTEMBER 30, 2015

Found out that my benefits provider will only cover RITUXAN for Rhumatiod Arthritis. It's NOT covered for Myositis. I don't understand....

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OCTOBER 1, 2015

I spent an hour getting Hypnotized today! Left with an overall sense of well being. Training my mind to help me to relax, slow down & be ok with having to take my time with things. I feel really good! Just wanted to share

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OCTOBER 3, 2015

I'm Scheduled for a muscle biopsy 7:30 am Monday morning. Do I need to be nervous? Does it hurt?

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OCTOBER 4, 2015

I had an EMG a couple of weeks ago! I was swollen 3 x's my normal size because of Edema. My Mom was in the room (neither of us knew what we were getting into) She almost fainted.. She had to leave the room. I guess she had a hard time watching me get zapped with electricity. I've decided that unless they can provide a compelling reason, I am NEVER doing that test again! I'm hoping the muscle biopsy is a less painful process! (Though I'd prefer a Swedish massage on a sunny beach).

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OCTOBER 6, 2015

Let it out, let it flow. I think there's a distinguishable difference between grieving & 'staying positive'. We must feel all the depths of our emotions. I think it's imperative to being a 'positive' person... We must acknowledge the hurt first before we can release it. That's much much different than self pity. And truly.. We have legitimate reasons to grieve & cry about. And then.. Before you know it, the sun is shining on your face & you're feeling the sunlight of the spirit.

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OCTOBER 7, 2015

Had muscle biopsy on Monday, and I can hardly walk I'm in such agony. No fever, but it's swollen three times the size of the other leg. I can barely breath it hurts so much. Pain meds are not touching it. Despite sounding like a drama queen, I think I should get it checked out?! Maybe it's the DM flaring up? (Not that it really left) The Edema is coming back?

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OCTOBER 10, 2015

My seven year old disclosed to me that he's afraid I'm going to die (I've been in/out if hospital past few weeks. Awe little buddy!! I assured him I intend in being around for as long as possible & I intend in a full recovery. He's grown up so much I the past two months. He says things all the time like, "Mom, I love your voice & the way you smell." I can tell he's just loving me. I am floored by his love. And I feel ... Terrible that he's afraid. I've been talking with him about having faith & how to love it like it is & let the good times roll! Thought I'd share because this is a 'side effect' of this disease that took me by surprise. The deepening of the bonds in ALL of my relationships. Everyday I make healthy food choices & take the prescribed medications (side effects be damned). I do this because this disease isn't the end of my world.. It can always be worse. All of the people I love are still here & alive! As far as I'm concerned.. These are the good times! HAPPY CANADIAN THANKSGIVING everyone! I consider this group a part of my abundant blessings.

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OCTOBER 13, 2015

It's been over a week since I've had a muscle biopsy in my thigh & I'm really struggling. The DM is causing the leg to be three times the size of the other leg, but I think it's just Edema.. Ive gained 5lbs in last 2 days. I really don't think its clotting. Ive gone to the hospital, Emergency doctors don't know how to treat it, family doctor doesn't know how to treat it.. Family doctor prescribed me Oxycodone.. I took half a pill yesterday & literally almost fell over.. I can't stand the way that stuff makes me feel. It just makes me into someone unlike myself. I do take Methotrexate on Wednesdays, so maybe that'll stop the DM from doing a number on my leg? Rest of my muscles ache from not being able to bear weight & using a cane. when i walk the leg us a 10/10 pain level, so I've just lying here and staring at the ceiling since 4:30 am.. In throbbing agony. I don't see the point in going to hospital, as I'm not in immediate danger. I do Have an appointment with the Rheumatologist this Saturday, so I'll wait until then & hope tomorrow's Methotrexate dose brings the swelling down. Today I have to drive my son to school.. So no pain meds until I get back home (not that I even want to take the evil things) thanks for listening ... I don't like to dump this on my family, as they just feel bad. But I just... Wanted to share with someone. Thanks.

- Thanks for being ok with the venting. It feels do counter-intuitive. At least here, I know you guys 'get it'. My family just all seems to be at a loss.. I feel bad for them!

- the narcotics REALLY mess me up. I'd rather take the pain. 

- None of docs think it's (my leg) infected.. I don't have a fever or anything. But maybe? The Healthlink nurse wants me to go to my family doctor today (again just feels like a waste of time)

- I've been doing well with elevation, I've never heard of water pills... I'm going to visit walkin doc again today... I feel like such a pain in the the ass... But better to be diligent & rule out infection. I can ask about water pills this morning.

- (regarding a suggestion to use Fentanyl) I really don't want to take any if that stuff. It REALLY messes with my head. No judgements on anyone who needs it or uses it though, personally I really can't handle it.  

- I had actually just dropped 20lbs, even taking Prednisone & 3 weeks of Methotrexate. I've been juicing, eating clean whole foods, nothing processed, no refined sugars . Salads, homemade soups, I was feeling great! Then I had this muscle biopsy and have gained 5lbs.. I swear it's all fluid in my left leg. Patiently waiting at the walkin clinic now... Just making sure it's not infection.. Checking to see if I could get something for Edema. I'd be happy if I can just get to being able to bear weight on this leg again' lol! 

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OCTOBER 13, 2015

I wanted to share some good news! To make a long story short - I've had to chase after three specialists & finally my family doctor to get me an appointment with a Hemotologist to exam swollen lymphnodes that came from a CT scan done 4 weeks ago. I got a call from the Hemotologist today & she personally apologized! She said she just finished reading my file and my story & feels so bad about what has happened to me. She sat on the phone with me & asked lots of questions & the best part... I've finally got the appointment to rule out cancer! It's about focusing on the positives right?!


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OCTOBER 14, 2015

Ok... So here I am a week later.. I was having coffee at my Moms work (nursing home) and I looked down & blood, liquid & puss was gushing out of my leg.. The worst rancid & putrid smell of my life!!! My pants were soaked! I happened to be near two nurses... Who helped me bandage up the biopsy site. So here I am I. Emergency again .. Going for another ultrasound... Depends in how big the abscess is they may need to make an incision to drain it. I KNEW something wasn't right... I KNEW it!! The doctors kept telling me everything was fine... And that they didn't know why I was in do much pain.... I feel good knowing I'm not crazy... And I'm glad the fluid bump is finally leaving my leg! 

- They've started me on IV antibiotics. I've asked to see the neurologist, because they have a knowledge if DM that the emergency docs don't have.  I will ask about a wound cares specialist... They mentioned I'll likely need to come back twice a day for daily IV antibiotics... I just knew something wasn't right... 

- I live very remote & in the country... Home care is likely an issue. I'm trying not to feel angry that I've been suffering with 10/10 pain all week. I saw three doctors... Explained my condition & how much it hurt. They just keep sending me away... I'm going to insist in speaking with Neurologist before I leave today. So the "expert" can at least have a chance to check it out & suggest treatment. Red Deer Regional hospital is at over capacity... They just kick us out as soon as they can because they need the beds. I'm tired of suffering.. It's not fair.. They should have checked for infection last week.

- I'm now going to hospital every 12 hours for IV antibiotic treatment. I was able to communicate to the ER doctor accountably & without blame my dissapointment that three doctors didn't catch the abscess.. That it took my leg exploding with puss for them to clue in to infection. That three doctors dismissed my pain as "just muscle biopsy pain". The doc was really good with me.. He listened & said he can't speak about what's happened.. But he personally wants to tracks progress. So I'm off to hospital every 12 hours for IV antibiotics & have them keep a close eye on the infection. Anyway.. At least I've got some relief from the pressure in my leg.  Honestly for now I just feel so dang rotten. I just don't have any more energy to stay mad. Just so done with being in pain.

- It was totally bizzaire.. I just exploded puss/blood all over the lobby & two nurses there to visit the Seniors home just 'happened ' to walk by at that exact moment! So cool.. Love it when stuff like that happens

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OCTOBER 15, 2015

Just got home from round #2 antibiotics. They had to do some serious poking & draining. But now know what morphine feels like!

- Day 2 of twice a day antibiotics. They took a culture last night, but it hasn't come back from lab yet.

It's not feeling any better yet & it actually exploded again in the grocery store tonight.

They've been giving morphine for the pain. So there's that.

Thanks for checking in guys. In a world where latley all I see are doctors and nurses where I'm just another face, it's nice to know someone out there cares.

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OCTOBER 16, 2015

Been in emergency for three hours now... They're opening the wound to drain. WAH!!!!!!!!! Muscle Biopsys stink! LITERALLY!!!!!

- Went in to ER for my morning IV treatment! Better news.. Things are looking better.. I think the antibiotics are starting to work smile. Plus I feel happier & more like myself today... Ya know?  

- Considering, I've been coming to the hospital every 12 hours to get IV therapy antibiotics along with morphine & gravol. My biopsy site had abscessed & I run fevers off & on during day. When I'm home it's all I can do to not sleep. I've had 5 shots of morphine in 3 days.. And about to get #6. I hope they get this under control... The immune suppressant drugs are making it hard. Sorry to dump in a message like this.. I just need to honest about where I'm at right now. I'm really struggling. right now it's tough. I'll be brave. I feel like my independence has been taken away & I hate relying on people.

- They're going to send me for an ultrasound on my leg again.. Drain it.. Pack it.. Morphine & gravol along with IV antibiotics. It's going to be another VERY late night. 

- Final update: white blood cell count stil very high. Kidney & liver check out all a-okay. Waiting for lab culture to determine if using correct antibiotic. Home now.. Ready for soup & bed. Sweet dreams.. And if you're actually reading this... Thanks & goodnight. 

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OCTOBER 21, 2015

Ok.. Latest frustrating symptom (I've got DM).. Swallowing! As in my ability to actually swallow my food is rapidly dwindling. It's really frustrating. Not to mention at times it feels I may choke. I've mentioned this to both my Rheumatologist & Neurologist. They both said as long as I'm not 'aspirating', just keep an eye on it. It's really .. Frustrating, anyone else have trouble swallowing?

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OCTOBER 24, 2015

My Mom took me away to the mountains to help me have a weekend away from illness. We just left hospital in Canmore, Alberta (having my dressings changed) and we are now having breakfast.

Spent the day in a wheelchair. That was awkward and emotional. No thanks.

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OCTOBER 25, 2015

Ok.. I'm not sure why but this video made me giggle.. Especially the 'doomsday musical effect' when they show the 'hands' of someone with Dermatomyositis!! LOL Really!?   https://youtu.be/gEqkWJkJuxs?list=PL6EA2F2986E7BE2F1

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OCTOBER 26, 2015

I have DM & just a month & a half in with taking immune suppressants. (Prednisone, Methotrexate & Cloroquine) I have yet to get a cold, or flu... But I'm nervous about what'll happen if I do. I've never had had flu shot nor pneumonia shot. I'm going to ask my doc, but thought I'd query the group to get your perspective & experience?! Thanks.

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NOVEMBER 4, 2015

I've just been approved to be treated with RITUXAN. I get my first dose on November 23rd. In just wondering what others experience with RITUXAN is? Trying to prepare...

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NOVEMBER 9, 2015

Ok.. Here's a weird one & would appreciate thoughts & or feedback. On Oct 5, I had a muscle biopsy done. It was ordereD by my Rhuematologist. It became abscessed and infected. I was in & out the hospital over 3 weeks getting antibiotics & morphine for the pain. I'm off antibiotics now, but am going to the walkin clinic every 48 hours so they can repack the wound. I've been walking around with a gaping hole in the side of my leg since Oct 5. You can literally look into my leg and peer down into a tunnel in muscle! I'm off antibiotics as the infection is gone. The problem is... It's NOT healing up. The walkin clinic doctors are starting to get worried, she said "I don't Understand why this isn't healing up, I've never seen any thing like this?!" She suggested I go to my Rheumatologist so see what can be done about it. I'm at a loss... The surgeon who did the muscle biopsy is just a general surgeon. I don't think the Rheumatologist will know much about muscle biopsy? I did leave message for him, but he's bot back until later in the week. I've asked them to close it up, but they say they if they do it'll just abscess again. Has anyone else ever had wounds that just won't heal? By the way .. The biopsy confirmed a Dermatomyositis & Lupus. Apparently my case was discussed I front if a panel of Neurologists!! Anyway... Wishing I could close the hole in my leg & get on with life!!!!!!! Thanks for reading.

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NOVEMBER 16, 2015

I've been sitting in the waiting room at docs office for over 90 minutes now. I do this every other day to get my biopsy wound repacked. Later today I go sit at the lab for bloodwork & then to sit & wait for a mammogram. In past two months I've spent a large portion if my life sitting in hospitals & waiting rooms. I'm not complaining... My healthcare is FREE just wondering what others do to pass the 'waiting room monotony'? 

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NOVEMBER 23, 2015

The most profound thing happened today! I started RITUXAN & after driving 2.5 hours home in Blizzard conditions, I arrived at my country home to discover that the running group I used to run with came & spread Christmas all over! Beautiful wreath on the door, nativity scene, decorations, they even put up the tree for me...AND they filled my fridge with food, and made me gluten free macaroons.. AND I got cards with hand written letters telling me how much I mean to them.....little notes all over the walls & counters...AND I got two brand new pjs! I honestly never knew people cared this much.. Last week I honestly felt like I wanted to give up & that this disease was kicking my ass. I was feeling pretty sad & really bummed out about not being able to run. i really really miss it. Thats why in so touched by my running buddies doing thus for me. It's amazing what kindness can do for people! I'm inspired to spread some kindness of my own! I wanted to share this experience with this group because you've all been SO GREAT with each other & supporting each other. Thank you.

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NOVEMBER 27, 2015

So this happened: I arm wrestled my seven year old.... And he won. Feeling proud & disappointed all at the same time!

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DECEMBER 14, 2015

I literally fell on my face this morning.. I saw stars! I cried just a little... Now I'm resting on the couch I can barley move my body. Pounding headache & nausea. I truly believe I'm ok.. Just hard to rest because I've got so much to do! Ugh.. I'm such a klutz!

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JANUARY 11, 2016

It's been a while since I've posted in this group. I've been consumed with life & focusing on healing my body. I've been cleared for Cancer.  All tests show that Cancer is not causing the DM. I'm up to walking 2km daily & have started to taper the steroids! Still on Methotrexate & Chloroquine, but I'll take it! I've been able to bath again, the wound in my leg has healed up (despite the ugly scar). There was a point I thought I'd never feel this good again... But here it is! So many have been supportive in this group when I was in the 'thick' of this, I wanted to share some good news too! ❤ xo 

Myositis - Do I really have to take these meds?

Today I ran 3 kilometers.  It was a struggle, but I did it.  I ran for three minutes and walked for one minute.  I choose to believe that I could run.  I'm even starting to ponder the possibility of doing the 10km Red Deer run in May.  Anything is possible!

It feels like my disease is in remission. I wish I didn't have to take so many harmful drugs. And though I respect the medicine, and am grateful for my ability to move with more ease, I fear what will happen to my body long term.  I've been questioning the longevity of my life these days.  With all of the medications I'm on, I often wonder what the long term cost will be on my body.  I ponder the reality that I may only have a decade or so left.  Perhaps this fear is totally unfounded, but with the type of medicine I'm taking I wonder. I am aware of the concept that our thoughts create our reality.  I also realize there is such a thing known as "self fulfilling prophecy", and I best be mindful as to what 'thoughts' I'm choosing to manifest.

Yet, in a big way, this belief has been fueling me to make the most out of every single day.

I ask myself if I am safe. If I am loved.  And this thought comes to my mind (in a voice not my own) "You truly already know the answer to this.  Don't pretend that you forgot that you're loved and life is safe.  Your soul knows the truth. You are loved. You are safe. Say it over and over again until you remember who you really are."

None of us are getting out of this place alive.  I love the idea that we are "spiritual beings having a temporary human experience".

Some days I want to cry, for what my body used to be able to do.  I believe that this is how I will heal. I tell myself that this IS being strong. FEELING the pain.  I want to walk through it, and come out the other side still loving myself.  What an exciting opportunity this is for me.

I strive to consciously choose to become a better woman from this situation. I truly believe that I am the source and cause of MY experience.  My perception is everything. If I don't like my experience, then I'll play around with different views of my situation.

I know that there are some REALLY cool awareness that can come from this.  Who knows, perhaps someday I could look at this disease as giving me the opportunity to experience spiritual growth.

Perhaps at a soul level, I had wanted this experience before even coming to earth in my human form?

Okay I know that sounds pretty 'out there'!  It's like I said, I just love to play around with different points of view.  Try out radical perspectives, just for fun! The belief system is a powerful thing, because what we 'believe' to be true, is ultimately what we experience.  Since we're making it all up, I might as well make up stuff that supports me in having joy, peace, contentment, love, excitement, adventure whatever!

Just like my run today, I believe the sky's the limit!

Myositis - Contributing Joy

"Having experiences in life is called living. Sharing those experiences is called loving." - Melody Beattie

When I give of myself, I am sharing my love.  If my purpose in life is to awaken and inspire joy, then I must give of myself.  My time, energy, attention, devotion, truth and dedication are worthy of sharing.  When I share these things, I then give permission to others to do the same.

I've been playing around with 'room vibration', where I have been consciously contributing joy to the energy in the room and the results have been amazing!

I remember standing in line to see a movie one night. We were at Silver City in Edmonton, Alberta. I looked around, and I thought to myself, "Considering this is suppose to be a 'fun' place to be, there sure aren't very many people smiling."  Everyone looked so morbidly serious.  Standing in line, no one was talking to one another. The energy just felt thick and heavy. I said to my friend, "Let's try an experiment.  Let's just start laughing hysterically and see what happens!"

So we began to giggle, and then chuckle, and then eventually we were cackling!  We were having a great time!

Then a really very profound thing happened.

The people around us began to smile, and the conversations picked up all around us.  People began to chatter and laugh.  After our chuckle outburst, we had three separate strangers walk past and either give us a compliment or ask us for directions.  I believe people were attracted to the vibration we were putting out!  Gone was the heavy and serious energy.  In its place were many smiling and happy looking people.

Give this a try yourself sometime!  I just don't recommend cackling while standing in line by yourself. Unless you want to be awkward.

Frequently I'm checking in, to see how I'm contributing to the vibration in my surroundings.

I know I can be a draining contributor or I can be a generating contributor to my surroundings.

The choice is mine.

I apply this theory every time I go to the hospital or see my doctor. The last doctors appointment I had ended up being a 30 minute conversation about life purpose and consciously contributing as an active participant in my recovery to health.  The doctor I had visited was from Africa and he and I totally connected at a heart level.

Side note: The picture featured above was taken this morning as I was driving my son to school.  A very joyful moment in time.

Myositis - My Deepest Fear

After sharing that I had gone for a small run, I had a friend suggest that I handle myself with kid gloves.  Though my friend had loving intentions behind the statement, I found myself reacting emotionally and I got curious as to what that was about.  After meditating on it, I came to the realization that since experiencing life as disabled, I now believe that life is way too short for kid gloves.  I'm a 40 year old woman, and have no desire to be handled like a kid. 

In the very recent past I had the experience of having to have someone help me get dressed, get my dish from the cupboard, help me in & out of the tub, prepare my meals, wash my clothes, help me in and out of a wheelchair, drive me around to doctor appointments, and basically take care of me as one would a child. This loss of Independence was hard to swallow and I can honestly say I deeply grieved my inability to take care of myself. 

My deepest fear of becoming a burden to my loved ones seemed to be coming true.  I know that my loved ones are the type of people who have willingly step up to be supportive. And I realize that part of my journey is to let people support me (like I have a choice).  If I'm dependent on others to take care of me, then they also have the power to influence how my day goes.  This loss of freedom was tough for me to surrender to.  But surrender I did and as always things seem to work out.

Now that I am up and moving around again,  I want to do as much as I can with my body before I loose it again.  I don't know when I may end up back in that position.  So far the medications are working, and I'm intending on staying this way.  Having said that, I know that nothing is promised. So if I can run today, then so be it! I'm going to run.  I feel a deep  NEED to keep moving.  I'm afraid that if I stop for too long, my body will being to break down again. 

Someone once told me that 'Fear is a lack of Faith'.  Once again I'm connected to having 'faith' that I can handle whatever this disease brings my way.

Myositis - Let the good times roll!

The photo was taken last night, I was having a good time at Value Village trying on Snowmobile suits! 

Since my diagnosis, I have decided that whatever journey my physical body takes, I still get to decide what my experience of life is. It may look a little different, using a cane or wheelchair, but I am still going to have an incredible life! I am very blessed & since getting Dermatomyositis I find that I fully LIVE every single day. I try not to take anything for granted. So I would say, in this way it's been a blessing. 

I think it's still important to 'grieve' the loss of what was, but I don't feel victimized by my illness. I'm actually not surprised that I got sick, as I was living a very fast-paced stressful life, fully self absorbed in my career. I see myself as co-creator of my illness.  And I also see myself as an active participant in my recovery. I do believe that I am the source & cause of my life experiences. It helps me to feel better about life to believe these things.  I realize that not everyone shares this point of view, and I am not one to judge another's journey or experience. I have enough on my plate just managing my own expectations of life!

When I am in the midst of my disease and everything hurts, and I can't swallow food, or dress myself, that the most important thing I can do to heal my body is to remain in a loving space.  I can't afford bouts of self-pity, as I find it just makes me feel worse.  If I'm going to be 'sick' I may as well choose to make the most of it!

I know that tragedy happens every day. It has happened in my life.  I have come to believe that how I choose to respond to what is happening that will make all the difference. I've noticed since I've gotten sick I'm much more loving, patient, kind, helpful, present, quick to play, light hearted. Long gone is that stressed out person I was before I got sick.  

I've had a wakeup call, and truly realize that my days are numbered on this planet.  I want to leave a legacy of joy. I don't want to waste a single day feeling sorry for myself. (not to be confused with grief.) If I need to feel sad, I cry, and get vulnerable while allowing others to nurture and care for me.  I truly believe that this has been an integral part of my healing. 

I also do my best to consciously choose to look at the beauty that surrounds me on a daily basis! I choose to love it like it is & let the good times roll. This was my slogan even when I was in the hospital. I was amazed how many friends I have made since implementing this philosophy! 
 

Myositis - Practicing Feng Shui

Something that has totally helped me in healing my body is the practice of Feng Shui.  It's the ancient Chinese art of how your surroundings affect the results in your life.  By applying some basic Feng Shui principles, I've raised my happiness bar by at least 40%!! 

First thing I did was to declutter, purge, release & let go of anything in the house that no longer serves a purpose.

Then I carefully culled the rest and kept ONLY the things that I cherish & love & have a purpose. Everything else was donated.

Next I used mirrors to increase the 'Chi' energy in the home & have applied 'color therapy'.  The results have been miraculous.  It's like a new home.  The house feels soooooo good! I feel better when I'm here.. where as before it was so cluttered & messy all the time.

On a daily basis, I do my best to stay on top of the cleaning & consistently declutter and purge. It is pretty hard to feel health & happy in a messy cluttered environment.

Throughout this process, I can tell you that I've had the most profound insights. For example, when I was cleaning out my closet I had a spiritual awakening of sorts. Letting go of clothes that no longer serve me, was uplifting.  I was able to release the memories go that were associated with that particular piece of clothing. Cleaning out my closet also inspired me to proceed with making amends to several people in my life. I had this surge of energy to heal those relationships  and I immediately took action to do just that. I sat down and wrote to over 10 people letters expressing my desire to heal any past hurts I may have caused them.  I expressed that I had no desire to hold on to any past hurts.  And I truly blessed them & want for them to experience love.  This has done wonders for my physical healing.

And that all transpired as a result of cleaning out my closet.
I'd encourage anyone to practice Feng Shui.  Especially if you are someone who is looking to increase their happiness level!  I have found it be to a very healing and beautiful process.

Myositis - The gift of movement

Today I went for my second run since my body was ravaged from Dermatomyositis.  I felt allot stronger today, and I'm amazed at how quickly my body is regaining strength.  It was only 1.3km and I could hardly even call it a run, but at least I was out there moving.  I followed my run with a lovely walk about the property I live on.  It's a big effort to keep the body moving, but I'm scared that if I stop moving then my body will start to break down again.  I'm not sure if that's a rational fear or not, but it's there.

During my walk, I spent quite a bit of time meditating under a 200+ year old tree I found in my back yard.  She is a Great Great Grandmother of a tree, and when I closed my eyes I felt this beautiful bright green energy.  I've been walking around feeling pretty buzzed ever since!  Once I got back to the house I treated myself to a sauna, complete with hair mask and essential oils. Finally washed & styled my hair & finished the afternoon up with catching up on housework.  I finished the evening off by playing cards with my seven year old and truly appreciating family time.

I had a vision today of how much I can inspire others through my dedication to running.  If I can keep my body moving, I just know it'll prevent a relapse of the Dermatomyositis. 

Just write!

I'm still mulling over the possibilities of my writing.  I know that one thing is for sure, that if I want to write something, then I need to start writing something!  I love the feeling of being in the flow and writing what seems to come from outside of myself.  I've noticed that when I walk frequently in the woods, I tend to get crazy ideas & downloads from the forest. I'm sure that sounds crazy, and that's ok.  As the saying goes, "Those who can't hear the music, the dancers appear crazy."  I've been looking into some writing courses.

Here's a little something I wrote the other day about a friend of mine who committed suicide in January 2007.

~~

It’s been 8 years since you’ve taken the next step in your journey.  I still think of you, especially when I’m out walking in the woods.  I imagine you walking next to me and I want to talk with you, but feel shy so I don’t speak out.  The winter snow is filled with memories of your life. I want you to know that you mattered and you made a difference. To me. You made a difference.  You were loved.  When you left, I thought my heart would never love again.  I delved into the darkness and got lost there for a long time. I thought that the darkness was the only way to stay connected to you. I longed to go home too.  And then the great spirit in the sky brought me a son.  A soul that anchored me to this world, and reminded me of the light!   I now see that I am still connected to you, and I cherish the dreams when you visit me.

My First Entry

In July 2015 I first began to experience symptoms of the disease I've been diagnosed with.  I've developed a very rare condition known as 'Dermatomyositis'.  This is an auto-immune disease, where my immune system is attacking my muscles.  When the disease is active, I can't walk up stairs, put my pants on, lift my head off of the pillow, or even get myself in & out of the bath.  I have to use a cane to get around & always need to ask for help when I'm grocery shopping to pull the stuff off of the shelves.

Luckily, I live in 2016 and there are great medicines available to me!  Four months into this journey, I find myself slowly recovering.  I've been walking on a daily basis in the forest that surrounds the home I live in. Also, I've been cleansing my home and applying 'Feng Shui' principles and I find I've been experiencing a huge shift in my energy levels.  I even went for a 1.3km run a few days ago.  It was a really slow run, but I actually cried a little when I was out there doing it. I honestly didn't know if I'd ever be able to do that again.  I'm learning to take what comes up and to love the experience!

Even if I end up in a wheelchair, or having to use a cane, I know that I will still have an amazing experience of life.  I know that life happens 'through' me and not 'to' me.

My intention for this space is to share my experience through writing.  I just really love to write & want to use this space to practice.   Also, I want to share my perspective of having a 'rare disease' and going through the medical system as an active participant in my own recovery. 

Daily I have experienced the most profound connections with others, and I continue to feel amazed at how much people care.  I feel incredibly blessed to be living a life that is truly abundant and the only thing that would make it better is to share it.

So welcome to my journey of 'Awakening to the World'.  I invite you to walk this journey with me for a time...  especially while we can still walk!