Friday, June 16, 2017

Cleveland Clinic

"Today as I head off to Cleveland I feel happy. I feel happy, and I feel grateful."

I wrote this as we were taking off, so you can see what kind of mindset I was in. After the last few weeks of things finally coming together, this felt right, and I was so grateful for my parents for doing this for me and being by my side. That's what I remember feeling.

The first day was an exhausting travel day. We had to connect through Toronto to get to Cleveland. So we took the very short flight from Montreal to Toronto (about 50 minutes), and then went through US customs there and took the very short flight (about 35 minutes) from Toronto to Cleveland. Sounds short and easy, but these tiny little flights actually take all day to get through. I was pretty much devastated when I found out the air conditioning on our flight to Cleveland was broken, on a 33 degree day. But with ice, I got through it!

We were staying in a really cool looking area downtown, and I was pretty impressed by Cleveland from the start! We grabbed a bite at House of Blues and went into a couple of tourist-y stores before crashing back at the hotel.

We woke up bright and early (around 5:30 AM) on Wednesday morning to head to Cleveland Clinic. Our first appointment was at Global Patient Services. I got to meet the kind coordinator who scheduled all my appointments throughout the last couple of months, and we had a meeting with a financial advisor.

From there we were escorted to a different building where I'd be meeting with the neuroimmunologist. Our appointment was at 9:00... and we were called into our appointment at 9:00. This may not seem like a big deal to some, but in Canada, it's an anomaly to be taken into your appointment on time. We are grateful when we have to wait 30 minutes. My doctor's office at home who is worst with this is my urologist (who I absolutely love and is totally worth the wait). The longest we've waited is 3 and a half hours. So it was quite a breath of fresh air to be taken right when we were scheduled for.

The neuroimmunologist was very kind, and a couple of things came out of the appointment. Firstly, he definitively diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome). Secondly, in regards to my neurologist at home suspecting Stiff Person Syndrome, he is suggesting a trial of IVIG. Hopefully this is something that will be life changing for me.

We were finished there quite early, so we had the rest of the day ahead of us and did a little bit of good old US shopping (I love you Target and Five Below) before heading back to the hotel to relax.

We woke up bright and early, but significantly less bright and early than the day before, for my Gastroenterology appointment on Thursday. For him, we ended up waiting half an hour, but like I said, that's nothing for us! Even though this appointment wasn't the most eventful, I loved the doctor. He was great at explaining things, and super funny and down to earth. He basically explained to us what kind of tests we'd need to do to find out if it's only my colon involved in the dysmotility, or if it's also my small intestine. So hopefully that is something we can figure out in the future. He was recommending starting the same medication as my gastroenterologist at home recommended to get things moving better. He also recommended a trigger point injection for an area where I have myofascial pain on my abdominal wall.

When we finished this day, we continued on our US shopping adventure... probably a little too hard, but that's okay. I crashed hard, but survived!

On Friday we slept in, and headed to the airport for our flights home. After what felt like the longest travel day, I'm home with Big in my own bed.

All in all, despite the reason for our little trip, it was awesome getting to visit a new city. Life at home gets a little mundane and it really did feel like a little adventure.

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