It’s hard to go through it again.

On Saturday something fairly heartbreaking happened to me medically. I wasn’t sure whether to post anything about it until I have some more answers, but I found it fairly therapeutic to vent about at the time and would like to post it. This is from the day that it happened. I’m sorry that it’s not the most positive of posts, but this has been really hard and it’s how I sincerely feel about what’s been happening.

It’s 5:30 am when she decides that she can’t fall back asleep anymore. She finally got a decent night’s sleep though, so she’s happy to get up today. She turns on the light and immediately realizes that something is wrong – out of the corner of her eye she notices the edge of her lens implant has come largely into view. Every time she moves her eye her entire visual field bounces and distorts along with it. Her heart rate shoots up and all she can think about is how badly she doesn’t want to go through this again. She’s been here before. She knows how this works and largely what’s coming next.

The day ahead of her now consists of ER and emergency optometry visits.  And she knows that the next few days will be filled with wait and worry. These are the things that she must now face, but it’s the uncertainties that frighten her the most. She will need surgery again, that is all but guaranteed and she knows that this time they may not be able to fix her eye. They have to be smart about this decision because anything they do to her eyes now would result in further damage – her tissue is weak to begin with and it’s been significantly further weakened with every lens subluxation she’s suffered. She’s only 21 and her vision is the most important thing in the world to her – and now the future of it is up in the air yet again. Every option they have is filled with uncertainty and potentially devastating consequences. She hates to be afraid but she is. The last two eye surgeries she had were filled with so many complications. They were far more painful than anything else she’s been through and instead of taking a month or two to heal it took 6 months. Her vision hasn’t been the same since – never nearly as good. But she’d give anything to have that vision back right now.

On Monday they will begin to put a plan into place of when she will likely need surgery. It would be so much easier if she didn’t have to travel so far for them, and during the holidays too. The surgeon that she’s had since she was 4 might not even be in the country right now, and she fears ending up with someone different with her complicated disorder and history. Her other eye concerns her too – if history repeats itself the lens in this eye could also dislocate within the next few months, just as it did last time. She tries not to dwell on those what ifs right now, they do her no good. So instead she puts one foot in front of the other, no matter how desperately she wishes she didn’t have to. She’s thankful that she’s not going through it alone and has her mom by her side. She’s coping fairly well, but it’s hard not to think about because it’s in her vision every second of the day reminding her. Eventually she starts covering it with a patch – it aches and makes her dizzy and the patch eases those issues and lets her think about something else.

The lens is still hanging on for now – last time it took a week to fully let go. She’s not even sure what she wants at this point – part of her just wants to get it over with, the other part of her is hoping beyond hope that it keeps hanging on just a little while longer. She worries that leaving the lens to pull through the tissue where it’s still attached is a bad thing to do and will cause a lot more damage in the end. But, she knows that her surgeon wouldn’t risk operating on her while it’s still attached. There are no good options, she feels suspended and numb, like she fell asleep and is just now waiting to wake back up. If only she could.

Drawing what I draw.


I love these prismacolor colored pencils, they’re so fun to use! I’m starting to get the hang of this.

It’s Always the Eyes

We basically just finished getting set up for my yearly[ish] trip to Vancouver Children’s Hospital for my echo in June. We had our Shriner’s bus schedules and Easter Seal hotel rooms all settled and good to go and my appointments booked. But, as goes pretty much anything to do with my eyes -they ruined the plans again.

There’s a stitch sticking out of my right eye (I know eww right? But it only looks like a tiny red dot above my iris, under my eyelid). It’s majorly scratching up the inside of my eyelid and my eye, so, we need to go get it lasered off asap before it does any real damage. I’m a bit uneasy about the entire thing. This will be the third or fourth stitch I’ve had lasered off or pulled out since my last surgery. Number one, after 7 surgeries this is the first time I’ve ever had any problems with stitches and number two; said stitches are what’s helping hold my lens in place so I don’t like the prospect of possibly making my lens dislocate – yet again.

Anyway, we’re (me and my mom) heading to Vancouver on Sunday now and luckily everything with my cardiologist and echo worked out so that we can just make this trip instead of both this one and the June one. So, I guess all in all it worked out pretty good. We’ll head out on Sunday and come back on Wednesday.

A big thanks again to the Shriners bus people who for the millionth time are taking us on the 8 hour trip to the city for free. And another thanks to the Easter Seal House who’s made these trips much less of a financial burden, again, for the millionth time.

P.S. – Happy Birthday to the world’s best mom. I love you and can’t even begin to imagine what I’d do without you. xoxo

Three Times, Not So Charming

I know it’s been a few days but I figure I should give you the final update on my drop and how it works. It does get rid of my double vision, but there’s a catch (isn’t there always?). The catch being that instead of one drop lasting 24 hours on me it lasts about 5. So in order to keep my pupil small and therefore keep my double vision at bay I would need to take the drop 3 times a day. They need to be taken at least 8 hours apart so there’s the 3 hours of double vision in between, and then there’s the hour of bad vision and intense eye aching after I use the drop. Simply said, no thank you. The costs are no longer worth the reward. Yeah, the double vision sucks and I would love it if it were gone, but now the pain (literally and figuratively) of doing the drop has become more of an irritation than the double vision itself. It’s nice to have the option in a situation to take the drop, like, if I needed to drive somewhere at night, but I definitely won’t be using it 3 times a day everyday. Driving a night is still a little iffy anyways because I still get major halos and glare from street and head lights

There is still the option of surgery. Which was explained to me like this: in order to surgically keep the pupil small they literally damage the nerves that allow it to dilate. They said it’s fairly straight forward and not too risky. Like I said, that’s an option. But for some reason my gut instinct is telling me that the surgery would be a bad idea, that it would be a mistake. So, because the double vision isn’t life threatening or particularly debilitating I’m going to trust my instinct and leave it for now. I don’t want to do something irreversible that I might one day regret unless it’s necessary. Plus I think my eyes have been messed with enough for a few lifetimes years and the thought of purposefully damaging nerves in my eye doesn’t sound like something to take lightly, at least to me anyway.

I’m at a place now where I am more at peace with my vision. It was hard to accept for a while that this was what it would be like from now on, but I’ve gotten used to it. It serves it’s purpose and I am lucky for that. I can see, maybe not like I used to but at least I can and that’s what’s important. There’s no point dwelling on the negative. For all I know one day there’ll be other options and they’ll be as good as new.

{I am not a doctor and the medical definitions and descriptions featured in this blog post do not and should not replace those of a medical professional. They are merely there to help give an idea of my situation and experiences. If you are in need of medical advice see your doctor.}