My Wonderful Mom

My mom is incredible.
And it is her birthday.
Her big 5-0.
But like one of her birthday cards said, "It's like getting 5 perfect 10s from the judging panel!"

She is beautiful.  Kind.  Caring.  Strong.  A disciple of the Lord.
Passionate.  Giving.  Wonderful.

She has done so much for me.  I truly believe if it weren't for her I wouldn't be feeling as good as I am now.
She has stuck by me and with me through the worst.  She has never failed to bring me wherever I need to go.  She has booked endless appointments and fought to find an answer to help me. She has always supported me and encouraged me to do what I love and make a difference in this world.

She is tender yet strong.
And I have learned so much from her.

She has never judged me or doubted the way I was feeling.  She never tried to convince me not to go on antidepressants or sleeping pills because of the stigmas attached to them.  She has always valued my opinion about what I feel is best.  She has pushed me to do more while still helping me with everything that was needed.

And today is her birthday and though it marks a big milestone I believe the milestones are just going to get bigger and better and she continues in this life.  As she walks closer and closer to The Lord.  As she gains knowledge to be a health coach and give to others - yes she is going back to school with ME! Read more about it in my latest post.  As she goes to Guatemala and sees the lives she has impacted (her wish was that everyone would donate to the Seeds of Tomorrow project instead of give her gifts!)
Watch this short video to see more about this amazing project that my dad imagined and has partnered with others to make possible!

She is amazing and I wish you could all meet her.
She is my mom and I cannot imagine life without her quiet and beautiful spirit.

Two Fingers - An Update of Sorts

Today I am grateful. I am grateful for today. 

For continued strength that has carried me through this day. This day of beauty, warmth, love and wonder. This day that has held possibility and joy. This day where previous limits have been lifted. Where experiences that I haven't been able to fully enjoy and love have been done. 

Today I went back to Village Church for the first time in many months. The church where I am a member and have been so challenged and through the challenging, have grown immensely in my faith. 

I can relate that growth to my faith from the challenge I have been facing these past almost eight months now too. Today while reading Philip Yancey, I came across this:

 "spiritual nourishment is best experienced in the wilderness"

I have been reading his book called Where is God when it hurts? and am already being touched, challenged and so affirmed in this period where it does hurt.  (I will talk more about this in a post to come). 

But thanks be to God it doesn't hurt quite as much. Acupuncture is doing me wonders. Health coaching is helping me cope and move toward greater healing. Doctors have been encouraging as both my integrative health doctor and internal specialist were so happy with my progress this past week. My integrative health doctor told me to believe him when he says I don't have chronic fatigue syndrome because it has no cure and I am getting better. And my specialist said that soon he thinks we will be able to talk about relapse prevention instead of symptom management (which included added Gabapentin to my list of drugs and increasing some sleeping medications). 

My crashes (post exertional malaise - a key symptom of CFS/ME) is getter less and less. No longer does a car ride wipe me out of the rest of the day and I managed to go to my baby sister's grad banquet and though it was exhausting it was so worth it and by the next evening I had more energy than I have had in a long time. 

I was reminiscing with one of my best friends about high school days. We even took out my high school year books. We were talking away with my baby sister and all of a sudden it was nine o'clock. We talked for hours and I wasn't even in bed resting my head. Sitting for hours around the table is something I haven't been able to do in the longest time. It was so encouraging. And so normal!!! 

As I am writing this post, I am sitting at a park overlooking the sun setting into the ocean below. One of my favourite things in the whole world. 

And it was even better than I could have dreamed it to be.  I was even excited about getting my first mosquito bite.  And you know why?  Because it means I am living.  I am doing more.  Doing what I love.  And getting out of bed. 

When you have no experience of pain, it is rather hard to experience joy- George Wald

On the way home a song by Jake Bugg was playing (yes, I can enjoy listening to music again!) and the part of the chorus says, 

I got out, I got out, I'm alive and I'm here to staySo I hold two fingers up to yesterday

And though I don't condone the rest of the song, I felt these words resonate with my life.  

So here is to hoping and praying that I can metaphorically hold up two fingers and say peace to what the last while has held. 

"Hold two fingers up to yesterday. But also take it slow.  Being joyful for all that I have. "

A Smile

"What's happened to you?"
The question I dread.  And it was asked by a total stranger.  Well I think she is friends of a family friend but I don't think I have ever met her, let alone seen her before. 
What's happened to me?  Has something happened to me?  Does my physical ability define who I am?  I know I am taking this question to places she never intended but it sure makes me think and wonder what has, if something has indeed, happened to me, and if that implies something is wrong with me...?
"I have Chronic Fatigue Syndrome," I replied but quickly added sarcastically, "it's been fun" because I was worried what her reaction would be towards CFS/ME.  Had ever heard of it? (Click here to read more about it if you haven't heard much about it).  Did she believe it was nothing and that I needed to push myself to walk  instead of letting my dad push me in my wheelchair (which by the way is new and wonderful! A dear family friend brought it over for me. It is much more comfy and stylish with its turquoise frame than my 'granny chair', as he affectionally called it, that we got at Canadian Tire for 50% off)?
I was worried she might scoff at me or just look at me weird. 
Why did I say "it's been fun", however sarcastically, because it definitely hasn't. And why should I care what a lady who was riding her horse down our road thought about me and my diagnosis?!
But for some reason I did care.  I didn't want to feel devalued or that I was less of a person. Weaker or a hypochondriac. 
Thankfully, she corrected me and said, "I bet it's not fun.  One of my friend's had that a while ago."
Confirmation. It was okay for me to be in my chair.  I was okay. 
And to that I replied, "Ya, it really hasn't been fun. I've had it for 7 months."
And we chatted briefly before my dad and I continued on our 'walk'. 

My dad convinced me to get out and go for a 'walk' to test out the new chair and I am glad I went.  Even though it was interesting and hard to see how forward some people are and what my own reactions are, I am glad I got out. 

It is a gorgeous day. Sunny but thankfully not too hot.  I managed not to overheat too much and the fresh warm summer air, gorgeous soft scent of clovers in blossom, the sighting of some wildlife and simply a new view, was a welcomed and wonderful change.  

Although the view from my window is beautiful and always changing, it was amazing to be apart of the life that occurs beyond my window.  To engage with what is around me and enjoy life anew.  Everything was beautiful to me.  Even the cracked pavement and empty greenhouse.  It was taking everything in as if I was in a new place.  I was looking with awe and wonder at the things that surround me.  The things that I normally I wouldn't have paid attention too.  
We saw a heron in a tree, a new family of baby ducks, the fast growing family of geese, wild flowers blossoming away, and looked around at our garden.  It was wonderful.  It was almost perfect. 

But I still wonder why I was scared and taken back by that lady's comment.  Just because I was in a wheelchair, there had to be something wrong with me. 
Yet at least she talked to me.  Some people ignore me all together when I am in a wheelchair, speaking abov me to whomever is pushing me.  It is shocking to me.  Appallingly sad and wrong. But I know I've done that before too.  Or just avoided the situation altogether.  Not knowing what I should say in worry of offending or something, so I would avoid. 
Avoidance isn't the better option.  It doesn't fix anything or make anyone feel better about them selves.  It doesn't make the situation go away.  
So please, try not to avoid.  But also think before you speak.  Ask how people are doing rather than what is wrong with them.  Or even just smile.

Even if you are just smiling because I look funny wearing two pairs of glasses or at my beloved pug on my lap (who happens to have three legs which also doesn't make anything wrong with him), a smile is still a smile and is worth a lot. 

PS. I came across this website called Story Cartel where you can get free ebooks in exchange for your honest review of them!  And since my brain fog is slowly lifting more and reading no longer takes quite as much energy nor produces an overwhelmed feeling causing me to stop, this has been a wonderful find.  Check it out!

My Dad

I really wanted to get this post out yesterday with it being Father's Day and all but that just did not end up happening.  Sorry Dad!
But you know, I am okay with that and I hope you are too!

Yesterday was a good but exhausting day.  I think most people, especially those with Chronic Fatigue, would agree that the 'special' days are more tiring.  More to do, more people, more food, more things.
Those kind of days give me a bit of anxiety.  I worry about if I will be able to do the things planned (ie. eat lunch on the patio with the extended family).  I even worry about trying to be more like me.  Or at least the me that used to be.
But regardless of the worry and anxiety that inevitably comes with 'bigger' days, I was so glad to be able to honor my dad yesterday.  And go to church with him after so many weeks without being able to go.  I think God gave me an extra dose of strength that morning so I could go with him.  It was special.  Especially because a couple weeks before he shared my story in front of the church along with the song worn.  My song and story (you can read more about it and listen to this song on my post Worn).  Everyone was so caring and said how amazingly he did.   How much he loved me and cared for me.  It was a huge comfort and I am glad I was able to spend Father's Day with him in that way. 

He has been a rock for me during this testing time.  A shoulder to cry on.  A ear that is always willing to listen - even when I don't seem to make sense or ask questions that don't really matter.  An arm always ready to embrace.
He pushes and challenges me but also accepts me.  He longs to see me better but he doesn't pretend that I am better or that I should try and be better. 
He is funny and weird, which makes me laugh. 
I always ask him to give me foot massages as my feet are cold and I know that his warm touch, even if it isn't the best massage, will warm my feet and my heart.
He can be opinionated and isn't afraid to speak his mind but you know that he will always be honest with you.  Whether it is about the vitamins that he thinks are useless or the fact that he loves you.  You know he means it - always.

He is my hero.

My friend.

My joker.

My support.

My father.

He is a world changer.
An adventure seeker.
Risk taker.
And God lover.
And has taught me to be the same. 

He has put the standard high for the kind of husband, father, and friend I hope to marry one day.  For he is generous, loving, funny, trust worthy, accepting, understanding, passionate, and not okay with just being but rather seeks to live to the fullest.

I am proud to say he is my dad for so many reasons.

I respect who he is and what he has done.

He thinks of others before himself.

He does things that he knows will uplift my spirit and always makes me feel loved. No matter what I can do or cannot do.  No matter what, he loves me.  And because of that I am blessed. 

Awake. Alive. Blessed.

After my first hospital experience, God continued to flood me with His peace.  The very world I knew seemed to be falling apart but I had a blessed assurance that I was not alone and that everything would be okay.  No relief came from my symptoms but I headed back to my apartment at school.  Looking back I know the only reason my mom let me go back to school was because she was scheduled to fly to Holland with my dad for his aunt and uncle's wedding anniversary and therefore I would have been at home alone.  So I went back to school, studied and took a midterm I had missed the week before (not sure how I managed that!), and tried to recover in my little apartment with fabulous roommates by my side trying to nurse me back to health.  God definitely divinely orchestrated us being roommates as my three roommates were also in nursing and were able to provide me great care, including a lot of tea, listening to my chest with their stethoscopes to see if they could hear anything, and even looking up in their drug book if it would be okay for me to use our other friend's asthma puffer to see if that would bring some relief (it didn't help!).

Sometime in the few days after going to Richmond ER, I stumbled upon this photo and made it my phone lock screen.  

Awake. Alive. Blessed.  

Although I had no answers to what was happening to me, I knew I was blessed.  I had so much to be thankful for including the most amazing friends.  I was looking back to a message I had sent to a friend saying I did not realize how scary it actually was on that Remembrance Day for my family to see me in the Emergency.  I also noted but that may have been because I was kind of out of it...! Regardless of that I remember thinking at least I am out of the hospital and with people I love.  Sure, having a hard time breathing and walking wasn't fun but I had a peace that it was all going to be okay.  I would get better and be back to my life soon - or so I hoped and expected.
November 15 came with a new, unpleasant and concerning symptom: chest pain.  You do not have to be a nurse to know that isn't good or normal - especially in a 21 year old.  I tried to hold it together and appear as if it were all okay.  Pride has a way of making you think irrationally - why was I so afraid of appearing weak?  (And why do I continue to struggle with that?) I was already so weak I don't know why I should seem to care!  But fortunately for me, two of my great friends were visiting and read through my "pretend you are okay" face.  My nursing roommates were out with class and studying, so Chels and Dave, my education buddies took me to Langley Emergency.  And what an adventure that was!  I could barely walk, was having difficulty breathing, and could not concentrate.  I remember talking with the triage nurse and she asked me how long I had lived in my house... really?! I couldn't figure it out but do remember be shocked at her question and laissez faire attitude about my situation.  So like any good ER visit we were told to sit in the waiting room and just wait.  I reassured myself that they would get me in right away as the nurse in me knew chest pain got people's attention and was supposed to mean quick care and treatment.  But no... we waited, and waited.  I slept for a while but ended up freezing so I got some more of my favourite warm blankets, and waited some more.  Dave wanted to get me some tea as I was still freezing but he was quickly scolded by a volunteer - "She can't eat or drink anything!  That might delay surgery if she needs it!"  That was encouraging... but still we continued to wait.  Thankfully we met a nice older couple, the Fishers, who brought us some entertainment as we waited.  Finally I was brought back to a small curtained room that looked as if it were once a closet.  I continued to wait but at least it was in a bed.  That was a blessing.  After nothing really happening, I got a phone call from my mother.  She was in the Houston (or some American airport) on a layover before flying to Amsterdam.  I almost did not answer because I knew she would want to come back right away and cancel the trip.  But I answered and somehow convinced her I was in great hands and would be okay.  
Waiting was the theme of this ER visit with little to show for it.  But Mr. Fisher and his wife ended up across the hall so that cheered my friends and I up a bit.  My faithful friends and our newly met friends were definitely a huge blessing in the little ER room.  I was given an ibuprofen (yep, a normal Advil), a prescription for a medication for heartburn (which I never filled), a referral for an echocardiogram to see if there was fluid around my heart, and the lovely saying, "If it gets worse, come back" because he had no other answers.  Thankfully one good thing came of this 8 or 10 hr visit.  Okay, I should not just say one thing because I was blessed in other ways... but one good medical thing (at least in my humble opinion).  
So I was back in my apartment, my parents were flying across the world, and I had no idea what was happening to me.  But I was awake and alive, so yes, I was blessed.  I still had this peace that was definitely from God because on my own I would have been freaking out.  Although that night in bed I cried the first of many tears to come in regards to the unknown of my health.  My blessed sister who lives in California called me to see if I needed her.  I said I was fine.  It was when she hung up the phone that I started to cry.  There is something about family that is truly a blessing and without them by my side I felt like I was missing a part of me.  But my sister Monica called me a minute after hanging up the first time and said she was coming.  She dropped everything and flew back to Canada the next morning to bring me home and care for me in the absence of my parents.  She is a true blessing.  
The next evening my chest pain got worse.  I was stubborn and did not want to go back to a hospital and wait anymore.  But I lost the battle.  I guess that is what happens when you are so weak you can't even try to hold your own.  You cannot through any punches but rather hold onto an arm and walk together.  So together we went back to Richmond Emergency.  I was seen immediately and had tests started within fifteen minutes of being there.  It was there I held on - I held on to God, my family, and my friends.  My friend Esther was my texting prayer warrior.  It was not long before many were informed and praying for answers at this third visit to the ER in a week.  Although they tried and tried, the doctor remained uncertain what was going on as all the tests were normal but guessed it was probably just a viral chest wall infection that would clear within the week.  Thankfully with a normal test result, he did say nothing was wrong with my heart.  So we left the hospital grateful.  Grateful as I was indeed blessed.  I was blessed to be alive.  Visiting the ER reminds you of the frailty of life.  A guy was rushed into the hospital that night and placed in the bed beside me where he ended up breathing his last breath.  Esther was able to comfort and pray with the family during the last hour of his life.  I believe that is the reason we went to the ER that night.  Not for me at all but for them.
I kept that photo as my lock screen for a long time.  It was a powerful reminder indeed.  A reminder that I continue to look to.  A reminder that brings me back to truth.  A reminder that I have much to be grateful for as I am so blessed.  A reminder that God is holding me and has given me life.