Posts Tagged ‘Retinopathy’

The Waiting Game – Part 2

If you’re a relative newcomer to MeWithD, you may not have read Part 1 of The Waiting Game, as I wrote it quite a while ago.  If you missed it, you can find it here.  If you’re too pressed for time, I’ll summarize:  With retinopathy, I feel like I’m in a perpetual state of waiting for my eyes to get better or worse.

Well at my last Ophtho appointment a few weeks ago, a new layer was added to this game.

I’ve always known that my previous retinal hemorrhages have left a mess in my eye.  I know it because I can see it.  But every time a bleed happens, eventually it clears on its own – at least most of the way.

What I didn’t realize until this most recent appointment is that there is more to this mess than meets the eye.  (Bad pun.)  In fact, lurking just outside of my vision…just on the edges of my periphery…is a nasty, big-assed clot.

Apparently said clot does not pose any significant risk to my long-term health.  It’s quite happy to keep hanging out in my vitreous and has no intention of migrating to more dangerous parts of my body.  It doesn’t indicate retinal scarring.  Nope, in it’s current location, it’s pretty non-threatening.

The problem is, if it decides to move out of my periphery and into my central vision, it will be pretty miserable.  My doc made it sound like I could expect to see pretty much shit-all through that eye if this were to happen.

So now I have the added “suspense” of wondering whether I will wake up to this one morning.  Or will I have to watch it slowly slide into my vision?  I’m not sure which would be worse.

But he assured me that a vitrectomy would clear it up if needed, and that there should be no permanent damage (barring the risks related to a vitrectomy).

Or, he said, if it did make a move and block my vision, we could try waiting for it to clear.

*Sigh*

Diabetes Art Day 2012 – Self Portrait

This is my first Diabetes Art Day and I’m pretty excited to be participating!  I’m also excited to check out everyone else’s contributions!

For an explanation of Diabetes Art Day, and the creative mind behind it (the lovely Lee Ann Thill), as well as all the submissions (past and present), you can find the D.A.D. website here.

I meant to make my submission long before today, but had been having trouble wrapping my mind around exactly what I wanted to do.  This morning I woke up with another retinal bleed in my left eye – not a big nasty one with the icky opaque blobbies, but an eyeball full of red streaks that was icky nonetheless.  The mess in my eye gave some clarity to my art project.

When people ask me what it’s like to have a retinal bleed, I ask them to think back to an art project they may have done in grade school.  The one where you get a piece of paper, a straw, and a blob of paint, and you blow through the straw and watch the paint wiggle and streak around the page until you have a stringy, goopy, spidery masterpiece.  That’s kind of what an eye bleed looks like.  They can also come in large opaque blotches, or in translucent mists, but this straw-blown paint type is what I’ve grown most accustomed to.

So, looking at myself in the mirror this morning, with my left eye all stringy, I determined exactly what my art project would be.  It’s more of a downer than I initially wanted to submit, but it’s what I needed to create today.  Here it is:

Self Portrait

** Edit:  I realized I didn’t fully explain my media above.  I used a photograph of myself (that I took) and my daughter’s tempera paint…with the straw-blowing method described above. 

3rd Trimester Ophtho Appointment – A Sigh of Relief

This afternoon I had an appointment with Dr. Ophtho.  We had scheduled it for this point in my pregnancy specifically because this was the point at which he noticed new proliferation in my left eye during my last pregnancy.  With the baby’s recent growth, I was a bit nervous that I’d be seeing growth in my retinal blood vessels as well.

So I was very relieved to hear the “no changes” verdict.  YAY!  Unlike my last pregnancy, I can probably safely say at this point that this pregnancy will not have advanced my retinopathy!  This is absolutely wonderful news!

And considering that I’m still not having any blood pressure problems, hopefully I’ll be free from any pregnancy-related retinal bleeds as well!  *fingers crossed*

The icing on the cake was when I asked him when he wanted to see me next.  His answer:  6 months!  I’m sure those of you with annual ophtho appointments are wondering why this is good news, so let me tell you.  Ever since The Kid was born and I had The First Bleed, he’s been requesting to see me in 4 months.  For him to ask me to come back in 6 means that he feels my eyes are stable – or as stable as can be expected given their recent history.

Yep, the icing on the cake. :)

Pregnancy Update – 32 Weeks

It seems that blogging during this pregnancy has been easier said than done.  I was really hoping to keep on top of things and keep everyone up to date, but clearly I’m failing to do so.  Bad, busy, pregnant me.  Anyway, today I do have an update – complete with pictures (which you may have already seen if you’re Facebook friends with me).

Maybe I’ll start with the pictures.

First of all, this one is me, taken yesterday at 32 weeks, in the classic “bathroom mirror phone photo” (thanks to having nobody around to take it for me).

Next, these two shots are from our first Fetal Assessment ultrasound three weeks ago (i.e. at 29 weeks) – one of her profile, and one of her face.

And finally, this is a close-up of the lower portion of her face (nose/mouth/chin) from this past Thursday – one day short of 32 weeks.  We can hardly believe the resemblance to her older sister already!

And now to bring you up to speed…

1. Doctors Appointments

They are ramping up big time.  I’ve been seeing the endo every three weeks (but expecting to go to every two after this coming week’s appointment), and the OB every two.  I have had two Fetal Assessments that were three weeks apart, but I’ve now been asked to come every week.  I haven’t had any recent visits with the ophtho – only two so far during pregnancy – but I have one coming up in about two weeks.  I also have phone appointments with my diabetes nurse every 3 weeks to do some more detailed problem-solving than what we have time for at my endo appointments.  So it’s busy.

The good news is that everything is going great and everyone on my medical team is really pleased!  Yay!  My A1C has been hovering just above and just below 6.0% (which I am thrilled with!), my BP is consistently under 120/80 (last one was 118/73), my weight gain is approximately 23lbs (perfect at this point), no thyroid issues, very little swelling (only a bit every few days in my ankles), and generally no sign of any problems.  The baby is hovering right around the 50th percentile size-wise, so I can’t complain about that either.  My left eye bleeds a little from time to time, but always from the same spot it did pre-pregnancy, and never very much.

All in all, I’m almost the picture of diabetic-pregnancy health!  It’s been so much work, but so worth it to have come this far already.  We don’t have a c-section scheduled yet, but my OB is still aiming for the week of April 9th-13th (i.e between 37 and 38 weeks…hopefully closer to 38).  The more confident he sounds in those dates, the more confident I’m feeling that this pregnancy is on the right track!

2. Missing Out on Important Things

No, this isn’t about “important things” like donuts, burgers and Snickers bars.  This is about the fact that, in spite of all the good stuff in #1 above, my OB asked (read: begged) me not to take a trip to Victoria, British Columbia at my 31-week mark.  The “important thing” in Victoria: my best friend from childhood.  The “important event”: her wedding.  There are few things in this world that could have kept me from watching this woman I love so dearly marry her soul mate (who I also love dearly, by virtue of how dearly I know he loves her), but this was one of those things.

While there was nothing to indicate any current health problems, my OB was worried that any additional stress of travel, etc, could start to cause that dreaded increase in blood pressure that could start the downward spiral we saw last go around.  Since my health, and the health of my baby (including the amount of time she gets to bake in my womb) is the highest priority for me right now, and since I trust my OB immeasurably (he is a very reasonable doctor, and an expert at what he does…not to mention a saint, but that’s another story), I had no choice but to heed his advice and stay home.  It was the right thing to do, but it seriously sucked.  Seriously.

3. Comparing Pregnancies

When I was pregnant with The Kid (i.e. the first one), I kept a pregnancy journal, so it’s been really interesting to look back and see the similarities and the differences.  On the side of differences, last time at this point I was having major swelling in my feet (read: compression socks and an inability to tie my shoes), and quickly rising blood pressure.  I was also significantly heavier by this point.  (For comparison, last time I gained 50lbs during the entire pregnancy and this time it’s looking like I’ll come in around 30lbs total weight gain, unless something drastic happens between now and my c-section.)

On the side of similarities, I was having some major insulin resistance (check), bad infusion site absorption (check) and was waking up every 2 hours at night to pee and/or check my bloodsugar (double check).  I was also entering “indigestion mode” again (seems to be a 1st and 3rd trimester thing), which is pretty much right on target again this time around.

It’s interesting how two pregnancies really can be so different, yet have some very distinct similarities.  I’m not complaining about any of the “similarities” though when I see how lucky I am to have the “differences”.

4. Insulin Resistance

I mentioned it above, but I’m mentioning it again.  Insulin resistance is huge in 3rd trimester!!  My bolus requirements at meals are more than double what they were pre-pregnancy.  I’m moderating my carbs a lot more with this pregnancy than I was with the last one so as to avoid massive insulin doses with the still-unavoidable (for me) bloodsugar spike-and-drop combo.  It’s really making a difference and it makes me wonder how I managed last time on a carby diet!  I’ve learned so much about my diabetes since then…  Last time it wasn’t abnormal for me to have highs in the high teens and low 20s (that’s the 300-400 mg/dl range) – not every day and not even every week, but every now and then when things weren’t working right.  This time my bloodsugar ceiling has been 17 mmol/l (~300 mg/dl), and I’m happy to say that I’ve only been that high twice in the last 7 months (making me a much less guilt-ridden Mommy than last time).  I’m at the point now where I feel high (and talk in terms of being high) when I’m above 9.0 mmol/l (~160 mg/dl).  It’s nowhere near perfect, but I feel like I’m giving this baby a much better growing environment this time than I was able to with Baby A last time, and that feels very satisfying.

Anyway, away from that tangent and back to insulin resistance.  I have it bad.  And it’s mostly around meals.  In fact, with my superbolus strategy (i.e. borrow basal insulin to add to meal boluses, and then follow it up with a 2-3 hour significant drop in basals), I’m seeing my basals drop significantly because of how much insulin I’m having to take when I eat.  So it’s this weird balancing act these days – add to the bolus, drop the basal, add a bit more to the bolus, drop the basal even more.  I find I’m pretty much assessing and re-assessing trends every 3-4 days now.  I’ve said it before and I’ll say it again – how anyone who is not an analytical Type A personality does this is beyond me.  I’m the kind of person who thrives on numbers and analysis and control and even I’m burning out!

5. Looking Ahead

Now that the end is in sight (hopefully still in as close to 6 weeks as possible and not sooner), I’m starting to think more about the time after Baby B comes, including my diabetes/diet management and my maternity leave.  I’ve realized two things:

a) There are going to be some days where I eat what I want to in spite of what I know it will do to my bloodsugar.  I don’t even mean donuts, etc.  I mean a bowl of cereal with milk, a real sandwich (on something other than skinny slices of high-fibre Weight Watchers bread), chicken fingers and french fries…things like that.  And I don’t mean on a regular basis.  I do still plan to go back to the low(ish) carb way of eating that I followed pre-pregnancy (and that I’ve only slightly modified during pregnancy), but I also plan on giving myself the leeway to have some exceptions – something I’m not really allowing myself in any major capacity these days.

b) I’m hoping I can get myself a bit further immersed in the D.O.C. while I’m on mat leave.  I see so much good stuff out there that I’d love to participate in more fully, but it’s so hard to find the time when I’m juggling work and my family and the rest of my life.  If I have a relatively happy baby (which I didn’t last time, so I’m still crossing my fingers about this for Baby B), I’m hoping to be able to participate more in online chats, diabetes blog memes, and a LOT more reading of blogs by my fellow D-bloggers.

And hopefully it will also mean more frequent blog updates here!

Thirty

December 30th, 2011 was the 30th anniversary of my diabetes diagnosis.

Thirty years is a long time.

On December 30th, 1981, I was 3 years old.  As you can imagine, a lot has happened since then – with diabetes care in general, but also in my own life with diabetes.  Here’s just a taste:

  • Blood glucose meters got a LOT smaller – and a lot faster.  I’m pretty sure my first meter took a full 2 minutes to give me a reading and was the size of about 6 of my current meters laid side-to-side.
  • I went from one shot of mixed insulin per day to multiple daily injections with both short (Toronto/Regular) and long (NPH, Lente, Ultralente) acting insulins to pumping with much faster-acting insulins (NovoRapid, Apidra).
  • I started using a technology that I once could only have dreamed of – a Continuous Glucose Monitoring System (CGMS).  I continue to dream of a day when this technology will function with more accuracy and consistency.
  • I stopped being afraid of blood tests, then stopped being afraid of injections, then stopped being afraid of infusion site insertions – but I’m still afraid of CGMS insertions.
  • I’ve developed callouses on my fingertips, and scar tissue in various parts of my body thanks to thousands upon thousands of needles piercing my skin.
  • I went from eating limited carbs that were measured precisely for me, to eating whatever I wanted using the “balancing act” method with multiple daily injections and the pump, back to limiting carbs that are precisely measured by me.  Funny how this one’s come full circle.
  • The girl who was embarrassed every day at 10:15 a.m. when her watch alarm went off and her grade 3 class tried to pretend not to notice her pull out her morning snack became the girl who writes on a public blog about her experiences with diabetes and who has trouble shutting up about it when asked a question.
  • I’ve struggled with the social aspects of diabetes: kids who taunted me with candy I couldn’t eat, how to handle Halloween and birthday parties, testing in public, learning to manage the effects of alcohol, etc.
  • I’ve been hospitalized with DKA – once.
  • I’ve never lost consciousness or been unable to be in control of myself due to diabetes.
  • I’ve struggled with anxiety.  A lot.
  • I’ve worked So Damn Hard to figure out how to make this disease my bitch instead of the other way around.  I’m close, but it’s a never-ending challenge.
  • I’ve logged hundreds (or more) of days of bloodsugar readings, insulin doses, and carb amounts.  I’ve searched for trends until my eyes hurt.  I’ve developed a serious dislike of this process.
  • I got married – to a man who wants to help me succeed at this.  I also learned that my success, my diabetes care, and ultimately my quality (and length) of life extend beyond myself to the people who love me.
  • I’ve brought my A1C down to levels I never would have believed I could.
  • My belief that diabetes complications would never happen to me has been shattered, thanks to retinopathy.
  • In spite of working So Damn Hard, I’ve still experienced blame from others, including medical professionals, for not getting it right.  I’ve also had my retinopathy blamed on my past of “too much cheating” by people who obviously don’t know what they’re talking about.
  •  I’ve met some great people, both in person (Hi Mimi! Hi Krista!) and online (Hi Mike! Hi Aaron!) who I wouln’t have met if not for diabetes.  (Please don’t be offended if I omitted your name – there are just too many of you!)
  • I’ve had a child – a perfect little girl who has no lasting effects of being created in the womb of an imperfect woman with diabetes.
  • I’ve learned to deal with retinal haemorrhages – and the ongoing possibility of more.  I no longer lift anything very heavy, put my head lower than my heart during yoga, or blow up balloons.
  • I’ve started to think a lot more about the genetics behind diabetes, and to hope I never have to learn how to manage diabetes in a child.
  • I’ve made the somewhat terrifying decision (with my husband and my doctors) to have another child and am over halfway through my second (and last) pregnancy.
  • I’ve spent 30 years working my ass off and doing the best that I could (can) with what I had (have) and knew (know).

Thirty years is a long time.

I’m tired.

Here’s hoping that the next 30 years include some pretty amazing leaps in technology, in knowledge and in the strength of all of us to apply both.

And maybe even a cure….?

Update – A1C and Ophtho

I finally remembered to phone in for my new A1C result.  Not sure why it took me so long to remember, what with diabetes weighing so heavily on my mind these days, but it did.

Five weeks ago I was 7.3 - up from where I usually sit in the 6s.  It was early in the pregnancy, and I knew it had a lot to do with 2 weeks of illness and 2 weeks of vacation, both of which occurred before I got pregnant.  But I was still determined to get it down.  I even pinky-swore…remember?

So this time I was thrilled to find out that five weeks of hard work slid that A1C right down to a lovely 6.4!  Woot woot!  (I never go back on a pinky-swear.)  Here’s hoping I can keep it in the low 6s (and dare I say maybe even into the 5s….?) for the remainder of the pregnancy!

Also, yesterday was my regular Ophtho appointment.  He noted the messy bleed from a couple of weeks ago, also noted no new proliferation, and said all the stuff I was expecting: “No Avastin while pregnant”, “Eye should clear”, “No other concerns”, “See you next trimester”.  I guess that’s all good(ish).  I like the “No other concerns” part, anyway…and the fact that there was no new proliferation, of course.  Dr. Ophtho also confirmed Jeff’s explanation of how the blood I’m seeing pooling at the top of my eye is actually at the bottom of my eye.  I feel like I should have known that…but I’m super glad Jeff pointed it out!

Anyway, that’s it for my update.  This is an “I’m-uber-tired-and-10-weeks-pregnant-and-the-combination-is-making-me-queasy” kind of evening, so I’m about to hit the hay only a little later than The Kid.  Goodnight!

Some Randoms

I haven’t done a random list of unrelated (or partially related) stuff for a while, so here’s one for you….

1. This was my lunch today.  It was a-maz-ing.  Two slices of Weight Watchers 100% whole wheat bread, a bit of light Miracle Whip, sliced grilled seasoned chicken, grated marble cheddar cheese, and some italian seasoning…..toasted to perfection in my toaster oven.  My husband always makes this delicious sandwich, and today it was my turn.  With my special bread, it was only 15g (net) of carbs (that’s 20g CHO less 5g fibre)…plus maybe 1/2 a gram for the Miracle Whip (I only use a bit).  YES!!!

2. I was recently introduced to almond milk by another woman with diabetes that I know.  (This is a different brand than she recommended, but the only one I could find in unsweetened.)  Cow’s milk tends to spike my bloodsugar a lot, so I tend to avoid it in drinking quantities.  This stuff (unsweetened) has only 3g of CHO and 1g of fibre for 2g net CHO per cup.  And if it’s not sweet enough for ya…add a bit of Splenda!  It’s not bad for a milk substitute.

3. Okay, this isn’t 12 of 12, so no more pictures.  The last time I was pregnant I craved things like salmon and eggs.  I was lucky.  What pregnant woman has healthy cravings like that – let alone one with diabetes?!  This time I haven’t been so lucky.  For a while it was salt, and I was managing okay, but lately it’s been all the worst NSFD (not suitable for diabetes) sweets – lemon meringue pie, chocolate fudge, massive bakery muffins, donuts….aaaaaaahhhh!!!!  I haven’t given in yet because I’m too scared of the impact on my bloodsugar.  So today I’m trying to appease my cravings in two ways: (a) really thin pieces of really dark chocolate (b) these low-carb lemon poppyseed muffins that I’m about to make.  I haven’t made them yet, or you’d have another picture here.  (My dietitian assures me that baking quantities of Splenda are still safe during pregnancy.  Whew!)

4. On to something other than food…. I recently had to have my Contour USB meter replaced because it was acting up on me.  Every now and then, after counting down to zero, it would stall out on me and then give me an error message instead of a bloodsugar reading.  Bayer was great in replacing my meter and also giving me some extra test strips to make up for the wasted ones.  But now, no more than a week after starting the new one…it’s not working either!  When I put the test strip in, there’s a funny click and it doesn’t turn on like it’s supposed to.  Sometimes it still does, but most of the time it doesn’t.  (The battery is fully charged.  It’s not that.)  So it looks like I’ll be replacing this one now too!  Disappointing.

5. This pregnancy is making me more tired than I ever remember being with the last one.  So tired.  I need about 10 hours of sleep per night to be fully functional – and that’s completely impossible during the week.  I don’t have anything else to say about that.

6. This past week I had the pleasure of sitting down for lunch with a woman who works for the same company as me who is a diabetes veteran and has retinopathy.  I hadn’t actually met her before, so she joked when we met up that we were having a “blind date” (LOL…retinopathy humour).  It’s typically been pretty easy for me to find people with diabetes around me to connect with, but I have to be honest that connecting with someone else with diabetic retinopathy is really something special.  Not to downplay diabetes at all, but to be able to talk to someone who truly understands what it’s like to have that first retinal haemorrhage, and truly understands the fear of more bleeds, more lasers, more proliferation, and more vision loss (temporary or permanent), is sadly comforting.  I’ve been lucky enough to meet other people like this online – through forums and through this blog – but this is the first time I’ve been able to meet one of these people in person.  Hopefully some day I can have some more “blind dates”.  :)

All for now.  I have an appointment with Dr. Ophtho this week, so I’ll probably have some more on the topic of retinopathy for you before long.

Good News: I’m Pregnant!

After the bad news of a few days ago, I’m happy to now be able to give you some good news:  I’m pregnant!

You may recall that my Ophthalmologist surprised me a number of months ago by giving me the go-ahead to try to have another child.  Since then, my husband and I have spent a lot of time weighing the risks (that do exist in spite of said “go-ahead”) against our desire to have a second child.  It’s been quite a process, but a few months ago we decided that we were willing to take the risk.  (Okay, to be fair it was mostly about my willingness to take these risks…but also his willingness to live with whatever outcomes there may be.)

And now, a few months later, here I sit with a tiny bun in my oven.  :)

I’m actually only 8 1/2 weeks pregnant.  Our intention had been to wait until the 12 week mark to go public with our news.  But my belly seems to remember all-to-well exactly what to do when pregnant, and is already creeping outwards on me.  It’s still hideable, but with difficulty.  (I’m pretty small, so even a small bump can raise questions.)  Between that and various planning/scheduling for the months (and years, actually) ahead, it was proving to be pretty stressful to hide our news.  If you’ve been pregnant with diabetes before, you’ll know that this combination already carries a shitload of stress, so we’re opting for stress-reduction in as many ways possible.  Going public now is one of those ways.

Plus now I can blog about it. :)

On the topic of blogging, my last pregnancy is actually what got me blogging in the first place.  You can read all about it here if you’d like.  For this pregnancy, I intend to keep blogging here at MeWithD instead of going back to my old one.  It won’t likely be in as much detail as the PregnantBethany blog, and I will continue to include non-pregnancy-related content here, but my preference is definitely to keep everything in one place instead of managing multiple blogs.

So far the pregnancy has gone very smoothly.  My last one involved a fair bit of anxiety (which I’m prone to) and nausea (which causes more anxiety)  in the first trimester.  Both of those led to higher than optimal bloodsugars at the outset of the last one.  This time I’ve been terribly tired, but my anxiety has been significantly less, and my nausea has been minimal.  I get a bit queasy when I’m over-tired or under too much stress, but otherwise my tummy is pretty happy.  Thankfully this has helped me maintain pretty great bloodsugar control so far (well, after that last A1C, anyway…which was largely from pre-pregnancy levels).  Like last time, I have a great team of medical professionals behind me, so I’m feeling pretty good about my ability to keep things tightly controlled.  I’ll do my best to keep you posted on that.

You may be wondering about last weekend’s retinal bleed and how it may or may not be related, since obviously my eyes are one of the bigger risks of pregnancy.  At this point I have no reason to believe that this bleed was related to the pregnancy at all. It’s likely too early in the pregnancy to be developing any more neo-vascularization (which hopefully won’t happen at all), and my BP is still great (hitting numbers like 120/70 and 108/60 – so definitely not elevated).  Plus, this bleed was very similar to others I’ve had while not pregnant, so I’m chalking it up to “it would have happened anyway”.

I still haven’t seen Dr. Ophtho, actually.  I see him the week after next.  In the past he’s told me that I don’t need to tell him about every bleed – only the ones that indicate some potential for retinal detachment (e.g. accompanied by lots of flashes as well).  Besides, he won’t do a vitrectomy when I’m pregnant, and (if I’m remembering correctly) he won’t do Avastin shots while I’m pregnant either….so there hasn’t really been any reason to discuss this last one with him, since I’m seeing him so soon anyway.

So the eye thing – most likely totally unrelated.  (But still really crappy.)

Anyway…I’m excited to finally be able to share my news here!  What makes it even more enjoyable is the fact that I can do it on a day that I’m taking a “logging break”.  I’ve been filling out frickin’ diabetes logs every day since the day I found out I was pregnant and I needed a break!  So I took one.

And now my plan is to try to enjoy this pregnancy (hopefully with stable 2nd trimester bloodsugars) and rest a bit while I gear up for the onslaught of OB appointments, Endo appointments, Ophtho appointments, CDE appointments and Fetal Assessments that will become my life in a few short months.  All with the goal of doing everything I can to protect this wonderful little Bean that is currently making a home of my womb.  :)

Bad News: My Eye…Again

I had another pretty bad retinal bleed again yesterday.  Left eye again, and from the bottom again.  Very similar to the last time.

Like last time, it started with a thread of blood that worked its way up into my vision.  It was a slow bleed, but by this morning there was a lot of shit in there.  A lot.  There’s not much by way of opaque blobs, but it’s a really thick blur in my upper and central vision.

It sucks.

The other thing that sucks is that there seems to be a blob looming at the top now.  I’m not sure if it’s yesterday’s blood that just collected up there (a lot of it made its way toward the upper outside corner), or if it’s another bleed.  I seriously hope it’s the former and not the latter, because what I really don’t need right now is bleeding from both the top and the bottom of my eye.

The last one cleared up pretty quickly, so I can only hope for the same this time once it stops.  It’s hard to tell if it’s stopped already and if things are still just moving around and settling in there or if it’s actually still bleeding.

What a mess.

And there’s just no way to know what’s causing it.  I’m not having new growth/proliferation, my blood pressure is good, I’m not doing any heavy lifting.  Basically I’m being an ideal retinopathy patient.  So the best guess seems to still be that my vitreous is pulling on my retina and its weak vessels.  And if there’s a way to stop that from happening (it happens as we age – retinopathy or not), I certainly haven’t heard of it.

I’ve talked Avastin with Dr. Ophtho in the past and we’ve always come to the conclusion that it’s not the best option, but that was before these last two more major bleeds, so I think it’s time to have that discussion again.  Previously the bleeds were largely just an annoyance, and cleared up quickly, but this is getting beyond that.  We’ll see….

So there it is.

Shit.

And that’s all that this one-eyed blogger can type today.

**Edit:  Since posting this, I received a couple of emails from another PWR (person with retinopathy…?) that helped explain some of what I was experiencing, and ease some of my fears about the bleeding happening in two different places.  He’s not an ophtho, but what he describes is completely consistent with what I’m currently seeing, and really makes a lot of sense.  His name is Jeff Parlier, and he’s given me permission to post his comments here.  Maybe they will be as interesting to some of you as it was to me.  Thanks Jeff!

Hello again Bethany. I just happened to click on your blog page and read your latest bad news. Damn I’m sorry you had an other big bleed. I know it just knocks you on your ass emotionally so hang in there.
I pretty much have the same issues you are. You mentioned seeing a “blob” at the top of your vision. This is actually the bottom of the retina (visual image is flipped) so you likely have a good amount of blood settled at the bottom. I have so much from my last big bleed that when I tilt my head back (looking at the ceiling) I can see a dark pool of blood running, pretty freaky.
One thing I found out was bending over downward (such as stretching hamstrings) would suddenly cause some blood trickling down from the top of my vision when I rose back up. What was happening is the blood at the bottom of my eye was rushing upward as my head was bent over and re-mixing into the vitreous. I thought it was all new bleeding at the time but actually it was old, settled blood. Keep your head position in mind. You may also notice this happening when you tilt your head back (looking straight up at the sky) as old blood at the bottom will run to the back of your eye (macula area) and you might “see” it as trickling down from the top of your visual field.

Here We Go Again…

If you’re friends with me on Facebook or follow me on Twitter, you’ll likely already know that I had a pretty significant retinal bleed yesterday.  (And if you’re not, and want to be, check the bottom right corner of my blog.)  

For a retinopathy refresher, check out this post.  And for my own little saga, you can read some of these.  But now more on the newest chapter…

The irony of it all is that, just yesterday morning, I was thinking to myself, “You know, I’m getting pretty close to having relatively clear vision.  Maybe in a few months I’ll be able to see clearly out of both eyes for the first time since spring of 2009!”

I’m not superstitious, but I can’t help feeling a little like I jinxed myself.

Early in the afternoon I started to notice a thread of blood creeping up from the bottom of my left eye.  It wasn’t exactly welcome, but it also wasn’t too much more than I had been having a few months ago, so although it was disappointing, it didn’t really faze me too much.  By the time I left work it had mostly absorbed already and was comfortably mingling with the old mess from the last few bleeds.  Meh…sucks, but whatever.

Then in the early evening a larger strand started to ooze upwards into my vision.  If you’ve never had a retinal bleed, it’s a bit difficult to understand what it’s like, but this one was sort of as if there was a little canker worm dancing on my eyelashes.  (Please note that this analogy makes it sound much cuter and more fun than it actually is.)  This one kept bleeding for quite a while, as I watched it branch and spread in the vitreous of my eye.  Before long my periphery on the left side of my left eye was a mess – blobs and strands and drops and mist.  And it just kept coming – thicker by now.  (Think dancing caterpillar instead of dancing worm.  But still less cute/fun.)

One of the things that is rather disturbing about an experience like this is that the blood seeping into your eye actually looks like blood.  (To me – not to you….you can’t see it if you look at me, in case you’re wondering.  I get asked that a lot.)  It’s red and, well, bloody.  So I’m now looking at the world through what appears to be a murder scene from  a worm/caterpillar massacre.  (Less cute now, isn’t it?) 

The scary part is always not knowing when it’s going to stop.  Wondering if this will be the time that it fills up completely.  Or going to bed, like I did last night, not knowing how much sight I was going to wake up with.  It’s pretty scary, folks. 

Thankfully this morning’s vision was no worse than last night’s – possibly even a bit better.  As today wears on, the darker spots are blending into a familiar mist-and-blur combo.  One one hand it’s better, because it’s less opaque.  On the other hand, it takes up more of my field of vision this way, since it spreads as it blends.  My depth perception has gotten pretty bad (thank goodness for auto-correct on my iPhone because that teenie keyboard is made for people with better hand-eye coordination than I currently have), and the headache that usually accompanies a bad bleed is on its way in.  I’m sure I’ll adjust to it as I always do, but the first day or so it’s a real pain in the ass.

So that’s where things are at.

I’m kind of torn as to how to respond to this from an emotional standpoint.   There’s always a part of me that wants to get mad at how unfair this is.  With all the work I put into managing my diabetes so that I can avoid its complications, it’s a real piss-off when something like this happens.  People with much worse diabetes control than me have perfect vision, and while I’m happy for those people (I am, really), it seems like a bit of a cruel joke that I’m having to deal with this.

There’s a part of me that wants to climb into bed, pull my blanket over my head and sleep and cry for the rest of the weekend….or at least keep my eyes closed and pretend this isn’t happening.  Seeing that shred of hope from yesterday morning crushed in such a definitive fashion is extremely discouraging.

But there’s also a part of me that is really really tired of letting this disease make me feel like shit – the part of me that wants to put my foot down about how much I’m willing to let it take from me.  I have no choice over what it does to my vision, but I do have a choice about what it does to my spirit.

So while I grieve the setback (because I’m also not going to pretend that it doesn’t bother me), I guess my goal is to look at this as just another bump in the road, and keep hoping that I’ll get to experience clear vision again at some point in the future.  (At which point I’m going to do so much looking….you have no idea!  I won’t even sleep, I’m just going to look and see until I’ve seen it all – clearly!) 

But next time I’m getting close to that goal, don’t be surprised if I don’t want to talk about it in case I jinx myself again. 

(I’m really not superstitious!)

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