Journal Entry #56

Tim went back to work this week.

With me a little more capable around the house and Tim feeling better in general, it was time.  He hasn’t had one of those scary episodes in a couple weeks now, which is fantastic!  In the end, we think he was having a reaction to the medication he was on.  That being said, he is still scheduled to have a gastroscopy to rule out another possible cause. We will both be relieved when we know for certain what was causing the severe chest pain when the episodes would hit.

The kids are ready for back to school, and so am I.  I am probably not unlike other parents out there, excited to have a routine again and maybe even some peace and quiet.  Don’t get me wrong, I love having the kids around and although I have been ill most of the summer, we still made some amazing memories and had some great times.

I NEED moments of quiet in my day.  I love to have alone time, to meditate, read, or just to have space to organize my thoughts.  As much as I enjoy company and having my family around, I actually haven’t been alone in my own home in 5 months.  I am thankful that someone has always been with me as I went through this process, as there were times that were terrible and I really needed help.  Times where I was too weak to pick myself off the bathroom floor, in too much pain to lift my head off the pillow, times that I couldn’t make it to the toilet in time.  Needless to say, I am excited to have space next week to find my own routine and enjoy my own company.

I am thinking that I will start to get my feet wet next week and try to see a couple clients.  And by a couple, I mean 2, maybe 3.  I have to start slow, primarily because my energy isn’t 100% yet…but also because I am still detoxing and my body is unpredictable.  I am finding this is a difficult mental/emotional space to navigate.  I want to feel like I am contributing to society, I love to be in service of others and I am longing for normalcy and routine.  I do have to be acutely aware that my health comes first.

I am coexisting with these bugs for the rest of my life.

Which means that my body and my immune system ALWAYS have to be stronger than they are.  For all intents and purposes, the bugs are dormant now.  But that doesn’t mean that they won’t get hungry again.  If I give them their ideal environment, they will begin to feast on my flesh again…and their preferred tissue is the nose and nasal cavity which will leave me deformed. (Don’t google it.)  So it is crucial, that I stay healthy and strong.

10 days ago, I was cleared to begin actively detoxing the Miltefosine from my system. I am working with Dr. Katrina to establish the right balance for drawing the chemicals out of my body.  There are lots of different ways to detox, but for me, we have chosen to give my bum a break (Thank God!) and are drawing the chemicals out through the skin.  I am taking some homeopathic remedies, herbs and a few supplements to churn-up the chemicals into the bloodstream.  Then I alternate each of the following, twice weekly; dry brushing the body (using a horsehair brush), vigorous salt scrub (20 minutes) and infrared sauna (30 minutes). I have one day of rest per week, but I still take the supplements even on the day off.  Basically, this detox routine takes about 1.5 hours in the mornings by the time I do the supplements (with certain foods) and activate the tissue and then shower to prepare for the day.  Some days, when I complete the process, I crawl back into bed exhausted, sweating and head-achy.  Other days, I feel invigorated and ready for the day.

Unpredictable.

I am continuing to work with Dr. Katrina to boost the micro nutrients in my body.  As I get stronger, we are spacing the IV therapy out to about once every 3 weeks.  I have to admit that I feel fabulous for about 4 days post infusion.  Day 5 and 6 are often brutal as my body comes down from the high.  In all honesty, the “crash” has gotten less drastic as my nutrient levels rise.  In June, the “crash” would leave me bed ridden for about 2 days.  Now, I must sleep and battle a headache, but I can still function through the day.  It isn’t ideal, but I am improving and getting closer to ME each time.

Today, I discussed with my family doctor, Dr. Brown, the implications of the headache that I have had for more than 12 weeks now.  I feel strongly that it is a “chemical headache” as this started around day 20 of taking the Miltefosine.  However, it hasn’t resolved itself yet.  That, coupled with the brain fog, the sentence and thought dropping and feeling like I am in a black void, unable to retrace my steps or thoughts to find where I was, is disconcerting.  He performed basic neurological tests today and I appear to be “normal” but we have decided to investigate this further.  Both Brown and Bogglid agree that this isn’t a typical reaction to Leishmaniasis, but we all agree that there is very little evidence in the developed world about what is “normal” with this particular parasite, and what is not.  Also, I am a bit of a unique case as the doctors here have very little or no experience (exposure or support for that matter) with Miltefosine. So, it is kind of a guessing game. Regardless, Dr. Brown has ordered a CT Scan of my brain to be sure that there isn’t something lingering there, eating there or happening concurrently to the Leishmaniasis.

That is all I want to say about it, and I really don’t want to think about it or the implications of what “might be” any further than that. Honestly, it stresses me out and makes me anxious – two feelings that don’t feel nice and are counter-productive to healing.  Instead of denying those thoughts and feelings though, I am reminding myself that I am doing all that I can at this point in time, and the rest “is what it is.”   I’m being rational.

Every day, I am reminded of how important my mental health is. What I think translates into what I feel and what I feel materializes.  As I go through this, I feel more authentically aligned to my thoughts and thus my feelings.  I simply can’t beat around the bush, I have to call a thing a thing, recognize it for what it is, and then let it move through.  Sometimes people will say, “let it go” and that is so frustrating!  I mean, if I knew how to let it go, I would have done it already!  Plus, I am not sure we can “let go” of feelings.  Part of being human is to experience the full spectrum of emotion.  We let go only to experience it again, at a later time…so do we even truly “let it go?”

Remember when we were kids and we played with the parachute in gym class?  The whole class would hang on to the edges and then we would throw a ball on and see how long we can keep it on the parachute?  I imagine that emotions are like the students hanging on to the edges of the parachute and I am the ball.  I bounce to fear,  then I bounce to joy, then I bounce to sad, then I bounce to understanding and before long I am bouncing back to fear.  And I hope like hell I don’t bounce off and hit the pavement!  I am not exempt to this process, instead, I am learning to embrace it.

I am still healing all the things you cannot see.

It is a process.

But I am, well on my way.

Well, on my way.

Well.

Xo, Juli