Move over Marvel

Yesterday was my first day back home after my trip.  I’d been feeling less than super.  My bed and I reacquainted our special friendship and I spent most of the day hanging out there.  I got up around time for school pick up, and just then, the phone rang.  It was a private number, I sighed …I didn’t have time for another one of those telemarketers.  I picked up the phone anyway.
“Hello?”
“Hello, is that Rachel? It’s Richard Steele. Immunologist.” 
Imagine that, said in a Superman voice and you are right there in that moment.

I sat down.
We’ve been waiting to hear more from the two immunologists I went to see a few months ago. I have an appointment coming up soon at the hospital to discuss The Plan. Last appointment, we talked about high dose steroids and IVIG.  IVIG has yet to be approved. He continued, “-has anything happened?” well now, there is a leading question!  My brain travelled instantly down the path usually accompanied by that question.  Why was he asking about my toilet habits? Was I supposed to do something in particular?
“…have you had any bloods or other testing done?”
Ah. Not about poo then.  The whole world is not about poos after all.
“No, not yet”
He apologised for the delay (have you ever had a doctor apologise for delay?!) and said he would send me through some new blood forms forthwith, get me referred for another Tilt Table Test and a Gastric Emptying Study.

I think they’re a bit like superheroes, these Immunologists I am seeing. 
Not in a crazy way, more in a “Woah… those guys are clever” kind of way.  It’s great to have lovely thoughts about doctors.  So often the experiences of Dysautonomia patients with doctors leads to other, less happy thoughts.  So I’m rolling with the loveliness.  If, in the end, they can’t help me, I will always be grateful that they have tried.  It’s all I need; people to try to help.

So those are the things I am looking forward to in the next wee while.  The tests are to establish baselines for comparison.  My last Tilt Table Test was in 2009.  It was a scary event, because it was when we learned that after 9 minutes of standing without the ability to posturally compensate, my heart stopped.  This time, I’ll have my pacemaker on board, but it is hard not to be nervous after the last time!   I’ve never had a gastric emptying study done, but I am interested to see what the findings are there.  Post-prandial bloating is a daily occurrence for me, so some data would be interesting.  The blood forms, I am also intrigued by.  I wonder what tests they have ordered?  Will they be different, or the same as I have had before?
Fascinating.  Scary.  Exciting.

Stay tuned for the next adventures of The Man of Steele (see what I did there?) and his accomplice Rohan The Illuminator.  Here’s a little sketch I did of them.  🙂

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8 thoughts on “Move over Marvel”

  1. Wait for more!!!??? I can’t wait – am hanging on to your every word/ next exciting instalment. So delighted the ball is finally rolling.

  2. YAY Rach!!! I’m so happy reading this, you literally made my day 🙂 I hope everything continues to move forward with the steroids and IVIG – they’re a good combination!! I had to have a pre IVIG TTT too.they are not much better than original but you’re a trooper and it will be worth it to see improvements in bp especially with IVIG. So happy for you & as always great read- thanks!!! X

  3. Amazing drawings Rachel. You are so clever. Good to know you are in such kind, capable hands and you feel so positive about these super hero doctors. Good luck with the tests xx

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