Wednesday, September 23, 2015

Jacob's Song Pick of the Day (9/23/2015): "Calling All Angels" by Train

Today's Song of the Day is meant to represent how I'm feeling, "Calling All Angels" by Train. Have a listen and read why this is my song pick of the day:

"I want a reason for the way things have to be/I need a hand to build up some kind of hope inside of me".

I went to the Train concert in Toronto. I never got the chance to see them. Instead, here is a snapshot of the moment everything changed:

This is me backstage in the medical services room at the concert. Hey, it's not all bad, I can say that I made it backstage at least! Too bad that I didn't get a chance to see the concert though, I "heard" it was a great one! This was the moment that would throw everything about my health off. I had collapsed in my seat at the concert from a hypertensive crisis (where your blood pressure gets abnormally high with no apparent reason). They ended up finding a heart problem, but we're still waiting to see an electrophysiologist after having seen a cardiologist.

So yesterday, my mom had my pre-op phone appointment with the surgical nurse to talk about my next set of scopes. As if either my mom or I need to be told what a scope is after 11 times through the procedure! Of course, we had to mention the heart problems but the cardiologist had cleared me for surgery. The nurse called back shortly after she had gone to check with the doctor to let us know that they felt they couldn't safely proceed at this time, until I've seen the electrophysiologist. In December.

To say I'm upset is a mild understatement. I've been having a lot more Crohn's type of symptoms lately that leads me to believe that I might be going into a flare, or already in flare mode. The only way to tell for sure is to see the results of the endoscopy and colonoscopy, as the inflammation markers in the bloodwork don't always paint an accurate picture of the insides. I've just started this new medication, Stelara, in May and we are all anxious to see if it's helping and if not to change up the treatment plan. The doctors were waiting on the scopes to make a final decision about my GTube (feeding tube implant). I'm scared. I'm worried that it's going to be the spring before I get help. I know that the meeting with the electrophysiologist is only the beginning of the journey for the heart issues and that I'll likely need more testing. Which means an even longer delay before I have more procedures. Then I'll have to wait weeks after I'm cleared by the heart guys in order to have my procedures scheduled. I feel awful now. I want to be able to get better now. Somedays you just need a hand to lead you back to hope.

What makes me feel better when I hit a moment like this? (Which seems to come along way too often) Throwing myself even more into helping others. Renewing my determination to help other kids with this disease so that they too can look forward to brighter days ahead. Please help make my day brighter, support my wish of making #JacobsHealingRooms a reality. Together we can help bring happiness and spread kindness.

"I won't give up if you don't give up"

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