Wednesday, March 23, 2016

Jacob's Song of the Day (3/23/2016): "Miracles" by Coldplay

Today I have chosen "Miracles" by Coldplay because to me it represents hope. Have a listen and read more about why I chose this song today:

"I've made it this far and refused to give up because all my life I had always finished the race" - Louis Zamperini, WW2 veteran and Japanese POW survivor.

Hope. What a wonderful thing that we incurably sick people cling to. We hope for better days, better treatments, cures. We hope for more understanding, more compassion, more kindness in a world that often just doesn't seem to get it. Hope is what drives us on, what keeps us waking up to each new day that passes. Hope is the exact thing that Miracles are made of.

I try to stay positive even though my health for the past 6 months has been on a downward spiral. In the past 4 years, almost every holiday and vacation has been spent as an inpatient at the hospital. I can no longer participate in Scouting, I haven't been to school for a full day yet this year so all of my friendships have also taken a beating. Even though I'm out of the hospital for now, I still find myself in a medical waiting room at least twice a week. My life has just done several strange trips through various wormholes and become something completely different than what I could ever dream up (or I guess in my case it would be nightmare-up?) I'm just growing more and more tired each day, when there's no real answers. I'm tired of the medical trips, the triple 'p' (pokes, prods and pain), the treatments that create new problems. So what is the one thing that keeps me going and inspires me to inspire others the way I do? 

Hope and miracles. What really keeps me going each day is the hope that I can make a difference. The hope that Jacob's Healing Rooms will help to make the treatment experience for other kids going through this a lot better. It's the hope that I can inspire at least one other person to do their own thing to make a difference in this world. It's hope that one day, we all can have a miracle.

Tuesday, March 22, 2016

I'm just a complicated guy... well, sort-of.

Round and round we go, where we'll stop, who really knows?! That pretty much sums up my day, my week, my life right now and since I was diagnosed with Crohns almost 4 years ago. Since that time, I've had a constant revolving door of doctors from almost every specialty involved because of the increasing number of health hurdles I've had to struggle through. I've seen GI, the dietitian, the health psychologist, the respirologist, the cardiologist, the electrophysiologist, and neurology. Today, I added a new speciality, endocrinology.

Since last June, I've been having a problem with my weight, which sounds weird because last June I was just starting to eat solids again after 4 months of only formula feed through my Naso-Gastric Tube (NG - a tube that runs from my nose to my stomach). But my weight kept creeping up. I went from 58lbs last February to being 124lbs this February, without even really eating anything! The doctors even stated that my weight had become a medical emergency because it had gotten so out of control. Hence the referral to endocrinology to see if there was something related to any of my hormones that was causing some of my health problems.

All of the endocrine tests have shown absolutely nothing out-of-whack with the hormones. Whew, so glad to hear that. But yet, that also means, no explanation as to what's going on.


The doctor declared that my weight loss in the last month has been "alarming". I have lost 7kg in the past month, which makes sense because I'm only able to take in about 2-3 bites of a meal before the nausea declares the meal has ended. Since coming off all of my anti-nausea meds for the past month, it takes everything I got just to try to get on with my day. It's interfering in just about everything I do. So the endocrinologist has insisted that we e-mail our GI nurse today to express concern about the weight loss, lack of nutrition, and nausea.

How we go from one extreme to the other is just completely mind-blowing. It seems that I like to do things either in a dramatic fashion, or not at all, at least as far as my health goes.

But the endocrinologist wasn't a total bust. For the past at least 6 months I've been having really bad pain in my knees, ankles and legs. It's actually so bad that to walk brings tears to my eyes most days. So the endocrinologist feels that we should seek a referral to the rheumatologist to talk about the joint pain issues. The wheel continues to spin around....

Wednesday, March 2, 2016

Jacob's Song of the Day (03/02/2016): "I Don't Wanna Go To Bed" by Simple Plan ft. Nelly

I'm taking a break from doing homework to get caught up on a lifetime of school work to bring you my song pick of the day: "I Don't Wanna Go To Bed" by Simple Plan featuring Nelly. Have a listen and read why I chose this song today:

I'm really liking Simple Plan's newest Album, Taking One For the Team. Hopefully one day soon I'll get to enjoy them live! 

Anyway, today's song was chosen as today is going to be a very long day and night for me. Just over 9 years ago, I went unresponsive in my mom's arms for 6 hours. The doctors could poke me with needles and run instruments over my feet, and I wouldn't move a muscle. I eventually came out of it, and after several EEG's (electro-encephelogram) to measure my brain activity, I was given the diagnosis of epilepsy. I really have a mixed bag when it comes to my seizures - I have temporal lobe seizures where I have odd physical feelings and I keep repeating the same word/phrase over and over. I have occipital lobe seizures where I get visual distortions. It's really not that great of a feeling when suddenly the room feels like something right out of Alice in Wonderland. I have absence seizures where I'll briefly "drift-away" and quickly snap back. Sometimes it makes people feel like I'm ignoring them when I don't immediately respond, so while they might be really quick seizures, they're not so great for the social skills, or receiving instructions, etc. Finally I have a few tonic-clonic seizures which is where my body can become rigid, shaky, I start to roll my tongue around in my cheek, I might arch my back so much that I could potentially go into the yoga bridge pose. Thankfully, these ones are few and far between. 

In May, I'll come up to the 2 year seizure free while on medication mark. After 9 years, this is a huge deal! To celebrate, my neurologist is going to start reducing my seizure medications. But first, there's a test that I must pass. 

Tomorrow I'm going for a sleep-deprived EEG. Because of my age, I need to be awake for the 24 hour time period before the test. When the body is heavily sleep-deprived there is more of a chance for triggering seizure activity. For a kid like me, who feels like going to bed by the time early evening comes around, this is going to be a challenge to stay awake! It's going to be a long day and night for sure! Thankfully I have my new Simple Plan CD and all my other favourites to keep me company overnight :)