June 18, 2019


*You can’t un-see these pictures.*

Journal Entry #37

I survived Darien Lake.

It was the right thing to do for my family, but I’m not sure it was the right thing to do for my body.  I spent a lot of time fighting pain and nausea, which I would have done anyway at home, but I would have done it with Cannabis.  Advil, Tylenol and Gravol just didn’t cut it.  That being said, I had times where I could sit out on a zero-gravity chair and visit with the other families and I even made two short trips on the motorized scooter into the park to watch the kids do some rides. The weather wasn’t the greatest, but it didn’t slow the kids down one bit.  They still did all the rides and the water park and had a blast with their friends.

I was fascinated to see the world from the scooter.  I noticed all of the other people in wheelchairs and scooters and for the first time in my life, really appreciated the struggles that the disabled have in this world.  Darien Lake is all paved paths so it is easy to get around on wheels but not all paths have ramps…some paths lead to stairs.  In which case, sorry about your gardens, Darien Lake.  I will also be more patient and courteous when wheelchairs and scooters are in my midst from now on.  The amount of people walking that cut me off or made quick stops in front of me was unbelievable.  I nearly ran over a few unsuspecting passerby’s.  Oddly, it didn’t make me upset, but it did make me aware of my own unawareness of accessibility. Another layer of growth for me.  I was also thankful for the kids, Tim and another camper who helped push the scooter back to our campsite when the battery died. I hobbled along beside, cheering them on.

I’m hypersensitive these days.  By that I mean, super emotional.  Chronic pain does that.  It distorts reality and rationalization sometimes.  When Tim was packing up in the pouring rain, and I was trying to help clean and prepare the inside of the trailer for travel, Faith decided that she wasn’t ready to go yet.  She said she didn’t get to do all of the things that she wanted to do because of the rain and that we probably should have just stayed home because that would have been easier for me.

Cut. My. Heart. Out.

She didn’t mean it to hurt me.  She doesn’t understand how much pain I was in all weekend when she was playing and having fun.  She doesn’t know that I sacrificed my comfort and medicines in order for her and her brother to have this trip.  She didn’t understand that I put her happiness above my own comfort.  And she didn’t know how my heart broke when she eluded to not having fun because she didn’t get to do all the things she wanted to do. Was all my pain and sacrifice for not?

She is eleven.

I was eager to get home. To find relief and sleep in my bed…to have the comfort of home.  It was only 3 nights away, but it was a long 3 nights.  The trip home was uneventful, except that Faith found in her heart, in her own way, a genuine apology.

A life lesson unfolded, that made all the pain and suffering of the weekend on my part, worthwhile.

She realized that her words caused harm to another.  Although she was just expressing her disappointment and feelings in her own little bubble, she hadn’t stopped to think about the other bubbles around her that made her bubble exist.  She understood that the world is bigger than her.  On the ride home, we had a moment.  A moment where she exercised her own courage to admit that she acted inappropriately and asked for forgiveness, a moment where she genuinely apologized because it was what her heart needed to do to feel better, a moment of absolution.  It was a beautiful moment, where Tim and I both commended her honesty, her courage and accepted her heartfelt apology.

This is how we grow.

We have the difficult conversations.  We make amends when we hurt each other.  We love each other, even when others are hard to love.  We have to realize that we are all just figuring out this thing called life as we go.  We are no different, no better, no wiser than the next.  We are all just finding our way.

The physical aspect of healing within my body is well underway. I am seeing changes that are very encouraging.  The wound on the hand is completely closed now, tender to the touch, but there are no more divots or open channels where the bugs had eaten.  The wound on the left forearm is 1/3 of the size now. There are still open channels that are quite tender to touch, painful when exposed to running water or even open air for that matter.  It is shrinking and flattening and showing signs of improvement every day.

The right foot ulcer is moving towards healing as well. There is still inflammation between the wound and the bottom of the foot that makes walking painful so I am still using a cane just in case.  I hope to be off of that soon though.  The lymph vessels around the ulcer seem to be less painful and must be healing internally.  As you can see from the pictures, there is still a ways to go for the flesh to regenerate to close the wound entirely.  I am using Flamazine and Manuka Honey to help with this healing process. The Flamazine irritates the flesh to stimulate a stronger immune healing response and the Honey soothes and creates a barrier to the outside world.  All in all, it is progress in the right direction.

The effects of the Miltefosine are still wearing off.  The stomach cramping comes and goes now instead of being constant.  The nausea comes and goes too.  The headache isn’t as intense as it was but it is still constant.  My heart is fluttering at times which indicates that I am still dehydrated and nutrient deprived.  The mouth sores are almost entirely gone now.  My energy is rising and my thinking is becoming more clear.  Although I am still dropping sentences and forgetful I am finding less embarrassment (it is what it is) and I am relying on those around me to help me out.  I am still not driving yet, but I hope to be soon!

I must be feeling better because now my brain is starting to tell my body to do things that it isn’t ready to do.  I really have to pace myself to avoid exhaustion and keep reaffirming patience as my brain and body recalibrate and sync.  Yesterday, I did the dishes and cleaned out the fridge.  Tim and I went for a small stroll to sit at the waterfront and watch the world go by and then I went to Canyon’s baseball game last night.  He was the starting pitcher against Norwood Storm and he was excited for the game. Today, I am horizontal.  Vertical time feels like nausea and a splitting headache.  My brain has a huge list of things to accomplish but my body will have no part of it today.  Even though it is frustrating, I think this is a good sign of healing.

There is another aspect to healing through this journey that I haven’t shared yet.  Mostly, because I don’t want to give it any more power than it already has.  The mental healing.  People tell me that I am strong, and can’t believe how well I am handling this situation.  The truth is, I don’t have a choice.  Once the bugs were on board, I had to go through this.  I have just had to ride it out and do the best I can.  That being said, sometimes when I close my eyes, I see bugs.  Silverfish, gnats, ants, spiders, no-see-ums, black flys, mosquitos, sand fleas…any bug really.

One time, when I was in a really bad bout of pain, cramping, nausea, itching and twitching where my whole body was bursting at the seams with over-stimulation, I took Cannabis as an oil and as a vape and then another vape, desperate to make it stop.  The over-stimulation stopped, but then I was trapped in my mind, in a hallway with a lion (he wasn’t going to hurt me) and bugs crawling all over the walls…every window and door was covered in bugs…and there was no way out…


Traumatized, I didn’t know what was worse, the bugs or the pain? I cried out for Tim to make it stop to get me out.  Enter more Cannabis.  Apparently CBD counteracts a THC high (paranoia)…so thankfully, within about 15 minutes I was out of that dreadful bug infested hallway and back into my own bug infested body.

I have been doing some self-hypnosis to combat the bugs of my mind, but I know I will need some professional help to overcome this.  In the past, I have never minded bugs, have been known to save spiders even.  I am an outdoorsy kinda gal, so gross things like bugs and snakes and wildlife aren’t so gross to me…until now.  It is really important to me that I don’t carry a fear moving forward that prevents me from loving nature and being out in it.  It is also important to me that I don’t pass on false fears to my children. I want to be fearless again, especially with nature.

It is possible.  I know it is possible.

Xo Juli

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