February 5 2018

What are the next steps?

The next step to becoming a mediator was passing the written and oral exams. I submitted the written portion weeks ago and had my oral exam scheduled in December. More specifically, on the day of my last, last infusion–the one that went haywire and left me sitting in the clinic all day fearing the worst.

Obviously, I had to cancel the meeting. I rescheduled after the dust settled, or mostly settled as the case seems to be. With my busy schedule and the interviewer’s schedule, I realized my best option was to schedule it for the day of my most recent appointment. I had no clue the appointment would turn out the way it did.

More than that, I have no clue how I managed to drive straight from the clinic to the Dispute Resolution Center office and pitch the hell out of myself. I wanted to fall apart. I wanted to express outwardly the emotions I felt internally, but I could not. I was determined to get through this step. I was determined not to cancel again.
Shockingly, I passed.

I am not as unaffected as I seem. A few days ago, we got a toll ticket in the mail. We are never in the area the ticket is from and the license plate was to a car we recently traded in, or so we thought. After a call to the ticket information line and a call to DOL, the ticket proved to be valid. After my appointment I missed my exit. I was so focused on not breaking down, on compartmentalizing all my feelings, and on getting to my exam on time that I completely missed my normal route.

Thankfully, the ticket is only $7.00.

If you are wondering, the next step is observation. I have to view x amount of mediations before moving on to the step after that. It’s a long and lengthy process.

In other news, insurance has taken my tough choice away; at least, I am choosing to look at it that way. The truth is insurance denied the request for new medication. Oddly enough, I’m even more confused about how I feel. On one hand, I feel overjoyed! I can use this as a platform to bolster my case for staying on Remicade. I can pitch the idea that maybe I just need a higher dose. (I think we tried and failed to get a frequency increase in the past, but maybe given the evolved circumstances insurance will approve it this time around.)
I sent a portal stating my opinion and my desire to try and increase the dose, or frequency, or both! I mean really, what do I have to lose? I’m already signing appeal paperwork, so what could it hurt to try? Think about it, if it works: problem solved; and if it doesn’t, at least I can hang up the Remicade IV knowing I fought my hardest.

Then again, on the other hand I feel utterly demoralized. What an F’d up world we live in that I have to explain to a panel of non-doctors that I matter. That my life means something. Do they think I want to be on these medicines? Do they think I enjoy the harsh side effects? Or that I want to be so completely reliant on something? I guess I just don’t understand. Are they looking at my chart and saying I’m not sick enough?

Is it a money thing? Is it luck of the draw?

I can’t be sure, but I think my portal might have worked! I got a voicemail today saying the clinic wants to reschedule my next infusion sooner!

For the final, and lately all-consuming update: I have decided to rejoin Team Challenge. For those of you unfamiliar, Team Challenge is an endurance training/fundraising program through the Crohn’s and Colitis Foundation. img_6339

I will be training to run/walk a half marathon. I purposely picked the race furthest out so that I had ample time to train. Also, I wanted the furthest one out because I have a fundraising goal of $4,000. I know it’s a lot, but with my health issues, I am more determined than ever to fight back.
I’m trying to come up with ideas. Currently I have a bowling event (Bowling for Bowels) planned in May, that is taking up a lot of my time, but I need more.

If you have any ideas or suggestions, I am all ears!! I also will be raffling off a brand new Kindle Fire– every $5.00 donation (until 02/18/18) is an entry. I am also in talks with a Brewery, hoping to do a trivia night.
You can track my fundraising progress here!
As far as the training, I’m out of shape. I am secure enough in myself to throw that out there. Even still, I have been walking 2 miles after work, and even did a mini workout/punching bag session yesterday when the rain was overwhelming!

I haven’t been 100% consistent with the walking, but I have worked out/made an effort more in the last two weeks than in the last six months!
I figure, if this disease is going to keep taking my blood, sweat, and tears, it’s at least going to do it on my terms.