What did I get myself into?

Well, I finally got my procrastinating bum in gear and dealt with an enormous amount of things that needed to be done when I seen my doctor. And, as I was dreading, I walked away with an insane amount of tests and appointments.

To start with I need an ultrasound on my kidneys, and also another one specifically on my gallbladder to check on my polyps. I need to go see a urologist out of town for bladder retention problems and find out whether or not there could be something causing it other than my spine. I also need to go back to Vancouver – yet again – to see the orthopedist that we had to cancel on earlier this year when my rib subluxated (we didn’t think I’d be able to handle the appointment because I could hardly move). While we’re in Vancouver we’ll also be seeing a neurologist about diagnosing (or ruling out) several different brain related complications that can arise in tissue disorders like cervical cranial instability and chiari-malformation.

We also need to talk to the neurologist about getting an upright MRI of my spine to check for dural ectasia and tethered cord (my gp isn’t allowed to refer patients for MRI scans). There are only two upright MRIs in Canada, one is in a private clinic in Kamloops that we can’t afford and the other one is in Vancouver but used only for research purposes. We’re hoping that since my disorder is rare that maybe if we talk to the right people I could qualify as research. While we’re in Vancouver we’re going to go see my ophthalmologist to check on my eyes.

My doctor and I talked a bit about my hip problem and how in her opinion since we already know that it’s subluxating and that’s the cause of the pain that she’d rather not order an x-ray on it. I’ve already had and will need so many imaging tests that she figures it’s best not to expose me to more radiation when it can be avoided. Since there’s nothing we can do for my hip right now but treat the pain I agree with her. I’m already leaps and bounds over the recommended doses of radiation so that does seem like a reasonable decision.

I think – and hope – that I remembered all of it. My stress levels always go up when I know I’m going to be seeing so many new doctors and getting poked at so much. That’s part of what sends me into my spells of avoiding my doctor altogether; denial’s much easier that way lol. I am grateful though, that I’m being looked after medically now more than in the past. It’s nice to have a doctor that willingly recognizes the ridiculous amount of avenues that need to be checked over with a disorder like mine.

On another good note, my doctor’s agreed to work and talk with the ILC Foundation when it comes to my care, as well as pass the contacts for the EDS aware doctors they’ve provided us with to the necessary specialists that I see. Thanks a million Sandy!!

11 thoughts on “What did I get myself into?

  1. I just saw this post. All this & yet you push forward. You took pics at your grandparents’, took the time to choose the ones to post, posted them & wrote your blog. You are creating beauty in the world, amidst your trials. You’re an inspiration Katie.


  2. Wow, that’s a lot on a little plate and I sure wish you were closer to the big city at times. I was going to mention tethered cord, but of course you already thought of that! Just take it one minute at a time and know your blogging friends are rooting for you. What a life this is…
    Hugs, A


  3. Hi Honey, there is just no slowing down and answers for you is there?????? I hate that you have to go through all this crap but as you say I am sooooo glad that you finally have a doctor that is with you on everything!!! I’m sorry you have to go through more and more, its to bad they cant just take a picture and it tell them everything they need to know. If only it was that simple. I love you sweetie, hugs and kisses!!!


    • It does seem like every time we get an answer two more questions come along with it. But at least I’m getting answers now :) I was just reading the card you left me last time you were here to get me through an awful night last night. Thanks for being so wonderful.
      Love you to the moon and back xoxo
      Hope everything’s going alright there. ♥


  4. Oh man Katie :( that’s so much. I hope you can schedule in some time to rest at least a little whilst on this huge medical trip. Sending huge yet gentle hugs and happy thoughts.


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