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

Thank-Yous & Goodbyes.

First off I have been reading all of your wonderful comments and though I haven’t gotten around to writing back I just want to say thank you and I really, really do appreciate the kindness and support. I try to respond individually to every comment but sometimes it takes me a little while to get to them. I’m also a bit of a perfectionist; I try ridiculously hard to say the exact right thing when I do respond. I feel like I owe everyone at least that much in comparison to what you’ve all given me.

I’m super tired right now, I haven’t slept in the last 24 hours, though, I did sleep the entire day the day before that. I got my fist dose of how much the beta blockers really are going to slow me down in regards to exercise. If they keep it up I think that I’ll be trying a different one or switching to the calcium channel blockers. I rode my bike to the nearby grocery store – something that I can normally do in my sleep – because my parents were out of town with the car, I had to get off 3/4s of the way there and walk it! That’s how exhausted I was and it was so embarrassing. I was so exerted that I nearly threw up multiple times and my entire body was shaking so that I couldn’t properly deal with my money in any sort of timely fashion. Of course I also got the “would you like to donate so and so much $ to the children’s hospital” which I always try to say yes to but then I had to sign my name, which took me way longer than it should.

I had considered calling a taxi or a family member to take me home but my pride got in the way of that. I ended up walking my bike the entire way home aside from the downhill areas. I’m still surprised about just how extreme the change in my resistance was. When I checked my pulse it was only at 117 – which might not be good, those of us with MFS are not supposed to get our hr past 100 when on beta blockers, but I hadn’t planned to – the point being that before I had gone on them I would get my heart rate up to 180 before I felt that exhausted (with the questionable approval of my cardiologist). I also forgot my asthma inhaler which was insanely stupid. Beta blockers can make asthma worse, but so far mine seems to be mild enough to take it. I just hadn’t expected to be exerting myself hardly at all and so I hadn’t properly thought ahead.

I’m having a hard time seeing today. This happens occasionally and it’s hard to explain. My eyes just don’t seem to focus as well and everything seems a bit blurry. It’s especially noticeable when drawing or typing. I often wonder if it’s connected to my headaches at all. I’ve been trying to pay attention and see if it precedes a migraine. I’m going a tad stir crazy. I love having the freedom to drive myself around but it seems like there’s always something keeping me from being able to whether it be a headache, too much pain in general, no sleep or having taken my pain pills – I won’t drive in any of those circumstances because I don’t think that I can do it as safely. Now the days are getting shorter and I still don’t drive at night because of my eyes. I generally don’t mind being at home but I’m starting to get anxious to get out of the house.

My mood’s been low. My best friend since grade 8 moved away to go to college and the day after my parents left to go visit my brother so I was alone in the house with my thoughts. Watching the world spin without me is a bit depressing. I had also wanted to go visit my brother but felt too badly pain-wise to do so. As for my best friend leaving, I’ve been trying not to think about it but I’m going to miss her. I’ve never dealt with change well and she’s one of the only people in the world that didn’t desert me when the pain started and I had to leave school. I’m really, sincerely proud of her but if I’m being truly honest; I’m also jealous. And not the kind of I’m miserable so I want you to be too jealousy. Just the I wish that my life was more like your’s kind. Health really is wealth.