The Waiting Game

If you’ve read my intro post or my post about retinopathy, you’ll already know that my left eye is currently a blobby, stringy, cloudy mess thanks to a retinal haemorrhage that occurred on the day my daughter was born (in May 2009) as well as the little leaky bleeds that have been occurring ever since.

I guess in many ways I’m lucky: it’s only in one eye, there are no new blood vessels developing, the mess has moved more toward the periphery than it used to be, my driving/reading/writing aren’t impeded too badly, etc.  Plus, I don’t need a vitrectomy…yet…

It’s that “yet” that gets me, though – the unknown road ahead.  Will it get better or will it get worse?

Sometimes it just feels like a waiting game. 

On one hand, I’m waiting for it to get better.  In theory, it was supposed to get better after the baby was out.  The proliferation of new blood vessels was supposed to stop without the pregnancy-related growth hormones running rampant in my body – which it did.  The bleeding was supposed to stop when my elevated blood pressure (from pre-eclampsia) went back to normal – which it didn’t.  Let me rephrase: the blood pressure did go back to normal; the bleeding didn’t stop. 

Why?

Because.

So I wait.  The mess starts to clear.  I get optimistic.  It bleeds again.  It’s a seemingly never-ending cycle.  (Okay, I know it hasn’t even been a year yet, but it’s hard to be patient when it comes to your sight.)

On the other hand, I’m waiting for it to get worse.  In theory this shouldn’t happen – the proliferation has stabilized, I’ve had lots of laser treatments, my right eye is stable, my blood sugar is good, my blood pressure is good, I’m taking care not to push/lift/strain in any way that could cause another bleed…

But the truth is that there’s nothing to say for sure that it’s ever going to stop or fully clear up, or that there’s not going to be a massive gusher of a bleed one day…

Any day….

Today….?

I try not to think about it too much, because a person could drive themselves crazy by dwelling on it – and trust me, I have.  I used to examine the blobs in my eye multiple times a day to see if they seemed worse…rolling my eyes around like a lunatic while trying to get a clear view of my periphery.  I used to avoid lifting anything remotely heavy – even staying at home with my daughter so that I wouldn’t have to lift her carseat or stroller in and out of the van. 

For a while my life revolved around these oozy blobs.  But I’m trying to change that.

It occurred to me that, when it comes right down to it, if it’s going to get worse, it’s going to get worse…very likely completely independently of anything I do or don’t do (other than careful diabetes control, which is a given).  In the meantime, I’d like to just live my life outside of this fear (which does still exist). 

So now I try not to pay so much attention to the blobs (easier said than done, of course) and I do take my daughter places even if it does mean lifting things…and I do lift and hoist and toss about all (almost) 20 lbs of her because I’m not willing to let my retinopathy take that from me. 

It’s taken enough already.

Still, I can’t help but notice the tiny new spots appearing in my eyes these last few days – the typical precursor of a coming bleed.  I can’t help but hold my breath every time I catch sight of an eyelash or stray hair in the periphery of my right eye – both of which look remarkably similar to the trickle of a small leak.

And I can’t help but feeling like I’m going to be playing this waiting game for a while yet.

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4 responses to this post.

  1. This is not a fun game we play. I wouldn’t wish this on my worst enemy. We warn others about it; we’ve been warned about it. Somehow we can’t imagine the impacts until they hit us. The emotions have already taken a beating, yet we live with the contant knowledge that it’s just a matter of time until the next “incident”. Or is it?

    There seems to be much hope. I can’t look for my links here at work, but a video by Dr. X out of San Diego suggests our futures look promissing. I believe it’s on DLife. It’s in teh DF eye forum somewhere too. Of course our futures depend on our levels of control. And achieving excellent control is certainly an option today. Pumps are really helping, and they are getting better. CGMSs have not taken hold yet in Canada, but we’re getting there. Our low-carbing diets will help too. Sugar IMHO is the evil in society. Nearly all diseases of civillization can be tied to it from diabetes to heart disease to cancers to many others.

    It’s been three years and four months since my vitrectomy. I started my retinopathy battle exactly 16 years ago. For the last two years my optho can find zero signs of damage. Zero!

    Yes there’s much hope my dear friend!

    Reply

  2. Hey Bethany, I just found your blog and I love it!! I have had T1 since 1986 and I also have a daughter (she is 15 mos. old now!).
    Thank you so much for having the courage to talk about retinopathy. This is a really scary subject, but I appreciate your posts about it because it’s difficult to find real-life chronicles of this type of thing. I am very fortunate to only have some “very mild” tiny spots (non-proliferative) that cropped up during and after my pregnancy, but it still makes me wonder whether I should risk another pregnancy. It’s always on my mind.
    Good luck to you!!

    Reply

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