That Pesky Little Thing…

Some people call it hope. It’s annoying. I have it right now. Go away little asshole. You’re a tease and a letdown. I’m in the waiting room of a new neurologist’s office (yes, live feed here)… With this lovely hope just sitting on my shoulder for the umpteenth time, whispering, “this is the one, this guy – he’s going to figure it out.” He has great reviews in the local POTS/EDS community and knows a friend of the family. Here goes nothing, again…

The appointment went well. He LISTENED, was thorough, took a lot of notes – no computer screen! Bonus points. He’s ordering an upright MRI – best for showing if my brain herniates anymore when I’m upright and how compressed my brain stem might be. It can also show craniocervical instability – where your skull and neck are too loosely connected basically. He also ordered several labs that I haven’t had before. He does want me to try Cymbalta, an antidepressant, because it can increase blood pressure and some of his POTS patients have found it helpful. I’m at a crossroads. I want to be a good patient and follow his advice but I feel very apprehensive about taking it due to my reaction to Paxil when I first got sick. I asked quite a few fellow POTS patients and the overwhelming response was don’t take it! I have a GI procedure on Friday – okay I was going to be all embarrassed and modest but I’m trying to portray an accurate picture of what dysautonomia patients go through. I’m having my butt scoped! A colonoscopy. Yay. I’m beyond nervous – not exactly about the nether region scoping but the anesthesia and how I’ll feel to take care of the kids afterwards. My oldest son has his first soccer practice tomorrow but I can’t go for fear of pooping my pants (butt inspection prep). I’m so grateful his grandparents are taking him but sad that I won’t get to be there. 

Moving on… I’m beyond overwhelmed, I may have mentioned that in every single blog entry. But I decided to pile a bit more on that… Dysautonomia Awareness Month is in October. Dysautonomia International is encouraging people to create events and seek proclamations from state and local government officials to officially make October Dysautonomia Awareness Month in states and cities to help increase awareness. For example – on October 1st, Niagra Falls is being lit up turquoise (the ribbon color for Dysautonomia). So – I’ve volunteered to seek a proclamation from the Mayor of Phoenix. Times ticking and I’m not sure that it will get accomplished by October, but I’m giving it a go anyways. 



4 thoughts on “That Pesky Little Thing…

  1. I’ve had all that. Hope. Butt scopes. Stay in the bathroom with the prep- don’t leave the house! I’ve had it three times. Never pooped my pants. 😉 I’m Here to talk- always. 🙂
    You’ll be groggy for 24 hours after the scope. No driving. Need someone with you- an adult. Can’t be alone with kiddos. I’m here. Please remember.


  2. I second the stay in the bathroom with the prep! I brought my laptop in with me and watched some films haha :). I had a great experience with the anesthesic and basically passed out through the whole procedure (which was nice) and then afterwards I felt like I was drunk – in a good way! Definitely have someone with you though for afterwards. Hope everything goes well x


  3. Not many people other than spoonies would understand that hope is the scariest emotion of them all, right? *hugs*

    Also…. throwing my opinion in the hat, be very.very. careful with Cymbalta.


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