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!