#endojourney: Battle Symptoms

Sixteen out of the past nineteen days my nausea has been so intense. I was forced to miss nine days of work and leave early on the other days. Aside from doing the essentials, I was beached on the couch in between dry heaving and/or throwing up. I have this plastic jug that is always within arms-reach; a memento from being wheeled out of the hospital while having a terrible reaction to the pain medication administered after my hysterectomy. Parts of the black sharpie have worn off, leaving only a couple of letters of what once read ‘Emesis’. Yet, my room number ‘111–2’ has been lucky enough to survive the daily washes.

A week ago, I awoke dry heaving and as I threw off the blankets, I felt the warm acidic bile rising in my throat. I took my free hand and clamped it over my mouth as the other hand reached for my trusty hospital vomit jug placed on my nightstand. I stumbled out of our bedroom as the jug was filling at an alarming rate. It was 4:00 am. The vomiting finally subsided around 3:30 pm when I managed to pass out and get some sleep.

After the removal of my womb, fallopian tubes, cervix and left ovary last July, I’ve been experiencing varying levels of nausea, bloating, numbness/tingling throughout my body, night sweats and chills to where my nail beds turn blue. At first, I thought it was merely symptoms of my recovery. However, as the months went on with the symptoms persisting, I made an appointment with my endometriosis specialist/surgeon. We are unsure if there is endometriosis elsewhere in my body or if I am suffering from an autoimmune disease, which is not uncommon for us suffering from endometriosis.

I was recently referred to an internal medicine specialist, with whom I had quite possibly one of the healthiest and respectful first appointments I’ve had in years. He ordered an MRI of my brain and neck as some of my symptoms could be caused neurologically. My results require further investigation from a neurologist into the fluid found around my superior sagittal sinus. I’ve also been referred to a urologist as my right kidney occasionally feels like it is being squeezed until it bursts, as well as a gastroenterologist. Feels like we are back at the drawing board.

Having spent more than one-third of my life with a debilitating disease, I’ve gotten fairly good at navigating through this River of Uncertainty. Perhaps it’s because my journey has had a fair share of ups and downs along with sharp twists and turns. Through these challenges, I’ve been able to scrape myself up in order to rebuild, only to find myself knocked back down by my health. The further my emotional and physical state worsened, the harder I worked on rebuilding. I wanted myself stronger and prepared for any diagnosis.

This trip down the River of Uncertainty though has not been like the ones prior. I have allowed myself to stay numb from the sadness; disabling construction on myself. It’s been extremely hard for me, as even as a child, I was a planner. When faced with a problem, I tend to think of as many possible outcomes so not to be caught off guard. It’s part of the reason I went into film production; constant problem solving where you need to come up with multiple solutions. As I am learning though, it didn’t matter how many possible outcomes and solutions I thought up, nothing could have prepared me for this current situation.

Having gone through five surgeries in nine years (two of which were last year, including my hysterectomy), only to be told my journey is not over, is the lowest I’ve ever been. It feels like I signed up for a five-kilometre run, only to find out I am actually running the Barkley Marathon. Even with my strong support system, I struggle with feeling like I’m the anchor weighing my husband, friends and family down.

It is a daily battle not to feel shame and hatred towards myself. There will be days where my symptoms will make it near impossible to live my normal life. On those days, it feels like I’m in a constant state of grief. Grieving the destructions of myself I rebuilt to maneuver around my disease, all whilst grieving the initial loss of hope. I need to keep reminding myself, this is not my fault and out of my control.

For now, there is nothing to do but wait for the appointments and test results. I can only hold on while bounding down the River of Uncertainty. Luckily, thanks to my new prescription for Ondansetron*, it will now be a little less nauseating.

cartoon credit: http://theawkwardyeti.com/comic/stomach-smash/

*Normally I wouldn’t take pharmaceuticals, however after these past three weeks — I am caving and taking the medication and hoping it doesn’t cause more problems.

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