We always carry on, and sometimes it gets easier.

First of all, I want to thank each and every one of you for all of your support. It seems so strange to think about how many people took the time to read it or share it on Facebook – I’ve never had that happen with such a personal post before and I really appreciate the response.

By Jeremy Taylor
Things have been easier since my last post. Of course they aren’t perfectly okay, but I’ve been coping really, really well. I feel much more hopeful about things than I have since everything happened. We’ve been waiting to hear back from my regular surgeon for the past two days but were told to call him today if he hadn’t gotten back to us yet. I’m really hoping that he’s taking the time to read thoroughly through my novel-sized records of eye history so that he can figure out what the best course of action is. Besides all of the surgeries themselves there’s so many incidents here and there throughout the past 10 years or so that could have an impact on how things need to be handled. I’m a bit nervous about what he has to say, but we’re basically waiting to find out whether or not we need to head to Vancouver to see him now, or if we could maybe just wait until it fully lets go.

Both of the above options have their pros and cons. While I want nothing more than to just wait and watch it for now, it’s a lot harder when it becomes an emergency and everything now needs to be done immediately, instead of in a way where things can be planned out – especially since we are 8 hours away and can’t drive there ourselves. I have to go to Vancouver for my cardiology appointments in March and it would be best if somehow the lens managed to hang on until then. To be honest, what I really hope is that it’ll just hang on like this forever. I know that’s very unlikely, especially with my history, but it’s still not impossible, and it’s the only thing that I’m able to grasp at right now.

Under normal circumstances the new visual change would be really disheartening, but I can honestly say that I could live like this for the rest of my life – and to be honest, I’d be incredibly grateful to do so at this point. My brain is adjusting to the vision change surprisingly well – I realized the night before last that I had been able to spend the entire day without using my eye patch. And I did so again yesterday. I’ve even been drawing sometimes, which makes me happier than I could ever say. The thought of losing that incredibly important piece of my life terrifies me more than almost anything, and to have it right now, when I wasn’t sure that I would, has meant a lot.

It also puts my mind at ease to know that my usual ophthalmologist is at his practice and in the country right now, because he’s often gone for weeks or more and we weren’t sure if we’d be dealing with him or someone we’ve never met. I do worry that he’s going to be leaving again soon and that he’ll want us to go down there to have things looked at regardless of whether or not he’ll be doing surgery at this point. I can understand why he would want to do that though, if he knows that he’ll be out of the country soon I imagine that he would want to check on things himself. Let’s just hope that’s not going to be a problem. It would be so, so much easier if we lived closer. I know it’s not the end of the world, but the travel and being away from home is definitely hard financially, emotionally and physically, on my mom and I both.

My family doctor phoned me today, wondering what was going on with my eye and wanting us to let them know as soon as we’ve talked to the specialist. It hadn’t even crossed my mind to phone and let her know what was going on and I was surprised to hear from her. Usually when anything happens with my eyes my other family doctors haven’t been involved at all. But, she told me to let them know immediately if I needed to make an appointment with them and that they’d fit me in whenever. I’m glad that they phoned, it’ll be good to be able to talk through everything with her and let her know a bit about what we might be looking at. Often when you hear that someone might need eye surgery you assume that it’s no big deal, and that is the way the first 5 were for me too. The pain was really minimal, to the point that I just remember the stitches being a little sore, and I healed unbelievably quickly. But the last two operations were riddled with complication after complication, and more pain than all of the other ones put together. I took 6 months to heal and my vision was never the same after. All in all, I really appreciate her support and interest in what’s going on, it makes me feel a lot more secure with everything.

That’s about all that I have to update everyone on for now. Again, I want to thank all of you for your incredible support and kind words. It makes such a difference in my life and makes me feel so much less alone. I know that I’m unbelievably lucky for it and to also have such a caring supportive mom by my side.

Big hugs to you all. xx
– Katie

7 thoughts on “We always carry on, and sometimes it gets easier.

  1. Pingback: Eye and heart updates (again). – Tissue Tales

  2. I hope things have improved (however they can for you). I also have EDS and am a professional artist- at least for now, but my wrists/fingers/thumbs along with basically the rest of my body are starting to sublux and dislocate with frightening regularity. I wanted to encourage you that your drawings are indeed very beautiful, and that you certainly have talent in that area… I hope you are able to keep pursuing it. Blessings. Blessings. Blessings. And gentle hugs.

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    • Thank you so much for your comment! And thank you for the kind words, they are much appreciated. I’m sorry that it’s getting so difficult for you to work on your art, I know how that feels and it can be devastating. It’s nice to talk to a kindred spirit! :)

      Like

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