May 17, 2019

An Oxygen Tank and a Cane

*Contains honesty and vulnerability…also you can’t un-see these pictures.  Proceed with caution.*

Journal Entry #17

I’m 14 days into taking the Miltefosine now.  And today, I have slept the day away.  You will notice there are no noticeable changes in the wounds…yet…

Unfortunately, I have had an allergic reaction to the Ondansetron that Dr. Bogglid prescribed on Tuesday.  I was a little itchy after the first dose, but didn’t think much of it. After the second dose, I was really itching my arms and back for a few hours and wondered if I was having a reaction. After the third dose I was itching head to toe – even the wounds and inside the wounds were itchy!  I took a Benadryl and the symptoms lessened.  I felt a little like a chemical cocktail,  I’m only taking the Ondansetron to help with the side effect of the Miltefosine, and then I had to take Benadryl to deal with the side effects of the Ondansetron…a chain reaction of chemical reactions.

I feel very lucky to have support from Pharmacy Associates Of Port Perry.  Doug helped me with my travel preparations prior to going on mission to Guatemala and has been a great source of advice and information as I go through this process.  I’m in a bit of a weird predicament.  You see, I purchased a drug that is not licensed in Canada, and I bought it directly from the manufacturer in Germany.  It came as a bulk order in blister packs.  There were no directions, print outs of side effects or instructions like one would typically get from their pharmacy.  Just the medication.  Dr. Bogglid did give me the anti-nausea regime and explained when and how many tablets to take every day as the instructions that came with the meds were all in German. The only specific information that I can find in regards to the drug is through Google…and we all know how dangerous that can be.  Doug, Bonnie and Melanie have been fantastic in supporting me with information, answering questions as best they can and taking the time to check in on me.  They did not dispense the drug for me, but as one of their patients they have invested time and energy into making sure that I have the care that I need.  They have gone above and beyond for me and we are so fortunate to have a  pharmacy in our community that provides exceptional care.

Through my conversation with Doug this morning, I have decided to stop taking the Ondansetron and have gone back to the Gravol.  It is unfortunate because the Gravol zaps my energy and makes me very sleepy.  But, it is what it is and we have to listen to what my body is saying.  So, today I found myself sleeping the day away with my feet up high.

I have upped the amount of time I am spending on the RIFE machine (biofeedback).  The RIFE treats the body through frequency as it sends signals through the hands and feet. My mom is helping strap the foot pads to my feet (without pressuring the ulcer) so that I can keep them up above the level of the heart and then I hold the hand wands too.  Yesterday found me in that position for over 5 hours running the frequencies through my body.  I will do this alternating days. It is a subtle energy and as with many natural forms of treatment the changes and effectiveness take time to note.  But I honestly feel like it is helping, and mindset is a powerful thing.

I have been internally chewing on some things the last few days.

I have been blown away by the phone calls, texts, emails, messages, cards and donations that have come in from literally around the world. People who I haven’t seen in twenty years are reaching out, people I don’t even know are sending cards and well wishes and I am simply blown away at the generosity and kindness flowing around our family.  In the past, I have deflected kindness because it is uncomfortable to receive.  I don’t like to be the center of attention or the topic of conversation.  But due to recent circumstances, I am finding that I have been challenged to say “Thank You” and NOT deflect.  It’s funny how experience can influence the comfortability of a new state or way of being.  I realize now, that all those times I deflected and downplayed kindness and compliments was a deflection of love.

I deflected love and didn’t even realize that I was doing it.

You know that old saying, “money makes the world go round”? Money isn’t the only currency that we as humans need to survive.  I think there is a more powerful currency amongst us.


I’m getting more comfortable with saying “Thank You” when someone compliments me or offers kindness.  I allow it in.  I guess that’s what it means to be in a state of receiving.  It feels like a whole new state of gratitude.  It is becoming more comfortable each day as I learn to receive.  I am grateful for the abundance of love currency flowing right now, and grateful for your participation in helping me learn this life lesson.

Leishmania seems to be full of lessons, doesn’t it?

Which brings me to a piece that I have been trying to fit together for a while now. A friend of ours has Idiopathic Pulmonary Fibrosis.  She is 44, a mother of two wonderful children and has a husband who is a Superman.  And she needs a new set of lungs.  She is ALMOST on the transplant list and God willing, will be soon.  Turns out, her doctors are at Toronto General too, and on Tuesday we both had appointments, just one floor apart.  We saw each other for a hug and moral support briefly between appointments.  Her with her oxygen and I with my cane and we laughed about how “old” we are for a couple of chicks in their early 40s!

She amazes me.

Here she is, cracking jokes, caring and asking about how I am feeling and she can’t catch a breath.  Her physical strength and her emotional resolve are really inspirational. I can’t imagine being in that place of waiting and hoping for a set of lungs in order to survive and see my children grow…knowing that in order for me to do so, someone else must die.  It is a heavy subject when you really stop to think about it.  Layers of lessons, layers of emotions and layers of mental wellness.

I often use the mantra “It is only temporary.” Or “This too shall pass.” Life is changing moment to moment and it reminds me that whatever moment I am currently in is just a BLIP in the bigger picture of life. When I am low, I listen to THIS song and am reminded of the constant changing moment.  I don’t know what she does to hold it together, or how she manages to be more up than down.  I don’t know how her husband does it either.  Their journey to new lungs has been long, and their journey beyond new lungs may be too. I am thankful that they have each other and a village that is supporting and loving them through it.

On Tuesday, when I stood next to her, I felt the hierarchy of “stuff”. Certainly, my friend is going through a longer and rougher patch than I, although I am sure she is learning a lot about herself, life and love too.  Internally, I went into guilt thinking ‘why aren’t we doing more for her and her family’…’we haven’t been a big enough village for her’…’Quit your complaining, at least you can breathe!’… that the outpouring of support and kindness that we have been receiving should really be going to them…

And then it hit me.

There is no limit to the currency of love.

There is an unlimited and endless supply of love in this world.  The last few months have shown me how important the little things are.  Things like texts, calls and Facebook messages.  Things like old fashioned letters and notes.  Things like quality time, conversations and company.  Things that cost no money at all.  Things that come from a place of love.  I am reminded that just because I am receiving doesn’t mean that she isn’t – there is no limit to love. Perhaps the lessons that she is learning right now are different than mine, with different influences and catalysts?

Who am I to judge?  Who am I to determine and set a hierarchy in relation to the stuff that people go through? It isn’t a competition.

It just is.

Here’s the thing: everyone walking the planet has a journey, has a story, have moments of joy and have moments of sadness.  There are no exceptions.  We are all going to go through stuff.  And everyone’s stuff will look different than ours, because we all learn in different ways and at different time and stages of life.  But my stuff is no worse than yours and yours is no worse than mine.

It just is.

When stuff happens and it is important in your life, it is important to me.  When stuff happens in your life and it makes you cry, or makes you leap for joy, I want to cry and jump with you too.   And when we go through our stuff together, with our village, it helps.  It makes it bearable.  It helps us find the love even when we can’t see it.

My friend is brave, and I hope she knows how special she is to me.  How much she has taught me through her example of living fully as she struggles to breathe.  I feel so blessed to have met her and am so thankful that she has come into my life as a teacher and as a friend.

I’m not planning on exiting anytime soon, but if something were to ever happen to me, she gets first dibs on my lungs and if she doesn’t need them, someone else can have them. I promise, there are NO bugs in my lungs!

Since you have read this journal entry all the way to the end, I would like to ask a favor of you, my village.  It will only take a couple minutes of your time and it would mean so much to me.  Please click HERE and become an organ donor today.


xo Juli

8 thoughts on “An Oxygen Tank and a Cane”

  1. I am already a donor !! Thanks for your journal entry thinking of you everyday and your friend is in my thoughts too!! Xoxo

  2. Hi Juli
    We are sending love. If we can do anything to help please let me know. Even a simple act of vacuuming, cleaning a bathroom or running an errand ( I’m off most Fridays).
    The Kuebecks

  3. Juli as I continue to read your very insightful journal of your journey I’m still in disbelief that this can be happening. It sounds more like a movie than reality and my heart goes out to you and your family. You are truly an us all. You are in our prayers and I and all of us at Loving Arms will continue to pray for you. Your strength and your positivity along with your many family members and friends will get you through this very rough patch. And I can only hope and believe that something good will come of this. Blessings to you Juli. Take good care and know we are all beside you. Love and Hugs ❤️

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