Tomorrow is my next follow-up appointment for my eye thing. This time, it’s with a new doctor, one that my local JDRF’s executive director told me about. I’ve already shared emails and a phone call with his office, and he has my files (though not the images) from the other retina specialist.

20140710-105946-39586656.jpgI’m hoping to find out his opinion of what happened and what is going on, truly. It seems that my initial diagnosis of Diabetic Macular Edema is/was/may be actually Central Serous Retinopathy, which is rarely -if ever- related to diabetes at all. Which would mean my complete upset and shattered emotions would have been for naught, and I feel like and idiot. It would mean that the first retina specialist acted on a whim of assumption that because I was diabetic, what happened had to BE because I was diabetic and for no other reason. And let’s not forget the fact that upon my follow up he also failed to even read my chart before coming in and asked if I knew if I was a diabetic or not…

So, for today and tomorrow, I’m anticipating and holding on to hope. Hope that this specialist is a bit more together than my last one. Hope that the CSR didn’t impair my vision permanently by stretching the macula tissue. Hoping that maybe the spots of non-proliferative diabetic retinopathy are the same or better, not worse. Hoping that maybe I can finally get glasses now that this episode is behind me so I can read without headaches. Hoping for good news all around.


3 Weeks

Three weeks ago, I began what I thought would be just a break from my Minimed pump / CGM combo. I was constantly getting frustrated with CGM sensors not lasting the full 6 days (usually only about 4 days) and knowing that my records were going to be all messed up. I have to hand it to Medtronic though, they stuck it out with me the entire time and without hassle replaced boxes of sensors and even my serter. But with all of the trying and trying and trying, I just couldn’t get them to work. So, I wanted to take a break. Being overwhelmed with that and just everything else, I just didn’t feel like I could troubleshoot anymore. Now, I’m not saying their product isn’t good, because I know a LOT of people who use it and have had a lot of success too, but I’ve learned one thing – there is a lot of truth in the fact that not every device “fits” everyone, and no, they don’t all work the same. Thus, my theory that everyone should get to “date” pump systems before locking in needs to be a must. And I don’t mean just over the weekend. I mean like, for a whole month or two.  I just think with all the scar tissue I have and the sensitivity to the tape the Enlite has, it’s just not worth trying to make it work right now. So yes, in essence, it’s me, not them.

When I got frustrated, I switched back to using my Dexcom. Granted, it’s a pain in the butt to keep up with, but for me? The accuracy over the duration of wear time is much better. It wasn’t until everything happened with my eye that I realized just how important it was. I’m not saying it is super accurate, but I’ve been able to depend on it more than the pump CGM, and right now that matters a heck of a lot more than whether it’s integrated or not. Plus, I have no tape rashes or burns from the Dexcom, so that’s a huge plus for me.

IMG_5503Also, at the time, I had a fling. No, not that kind of fling… a pump fling. Knowing how I am about wanting to switch up pumps between the Medtronic and my t:slim, I had actually planned on going through maybe two cartridges in my t:slim pump at the end of March. I don’t know if the battery works the same as most computer batteries, but with those, if you don’t use them, the batteries mess up, so every now and then I wanted to be able to use it so that just the lack of use didn’t mess up the battery. So, when the eye thing happened, I was on the t:slim. I was not having any issue at all with the pump like I had before, so I am not attributing what happened to that, but I am telling you that because when I spoke with my endo, he told me to “keep everything to the same” until I went for my appointment… which will be next week. So, for 3 weeks now, I’ve been using my t:slim pump. Much longer than I expected, but I have to say, I haven’t had the issues with random, uncontrollable highs that I did before. In fact, it’s been quite the opposite. My control has improved. I still wonder if the cartridges I had were affected by the recall, but that the lot numbers were too “young” to be considered in it (my lot numbers were in the 300’s, the recalls started in the 800’s). I’m not going to lie, I’m sort of hopeful that maybe that was the case and now the pump will work just fine.

And, as an update to the whole eye thing, I have good days and bad ones. For the most part, if I can keep my blood sugar as steady as possible and without any major swings (like, no arrows on the dex, and no BG’s above 180-200 for a period of time), my vision is pretty well clear. But if I have a period of time were my BG has run high for a while or if I have major swings (like when I went from 220’s to 70’s within an hour and a half), my eye is pretty well good for nothing for a while. It’s amazing me how things work and affect us all. If anything, this has taught me, as I said before, it’s not about what you use to control your diabetes, as long as you’re using it the best you can and doing the best you can.

Anyway, that’s sort of a rundown of what’s been going on. I know it’s probably confusing when I just throw stuff out there at random without any true point or purpose other than to just get stuff out of my head, but that’s sorta what I started blogging for anyway.

The Other DME

I woke up and noticed something different today.

I rubbed my eyes, but to no avail. “Maybe I’m low?”, I thought, but a quick blood sugar check revealed a nice 82. “It must just be some icky funky eye gunk … my allergies have been all over the place lately.” But washing didn’t help it. Cover left eye, right eye is fine. Cover right eye….

NOT fine.

It was as if I was wearing a dirty, dried out contact over my left eye, but that still gave perfect peripheral vision.

I wanted to freak out. I told myself to stay calm. Maybe I just had pressure on my eye for a while and it’s adjusting back. Maybe it’s just I haven’t woken up good enough yet. Maybe this is just something that will pass in a few minutes.

Two hours later, no change. A phone call in to my Ophthalmologist, and I was told to be there by 11:30. That’s never good when they want to see you THAT day. I went on to work, but looking at a computer screen is… weird.

When we got there ( my husband took me just in case), they took me into the pre-exam room, and I looked at the letter chart. My vision was still good in my right eye (20/20), but my left? Had gone from 20/20 to 20/80 and STILL blurry… overnight. With my eyes now dilating, I waited to see the doctor.


He came in and looked into both eyes. He stared in my left for a good while. As if I couldn’t already see because of the blur, now I couldn’t see because I was blinded by the magnified light. He sent me over to get a picture of my eyes, but had the nurse jot down notes that sounded like “superior and central CSR” (central serous retinopathy), which I had already Googled before going. He then looked and said that he didn’t think it was anything diabetes related but that there was a collection, or blister, of fluid in my eye and some swelling, but that he wanted to get pictures to confirm. “Okay”, I thought, “I’ve already looked this up this morning, this is sort of good news because it typically goes away in a few months, often as spontaneously as it appeared. No big deal.”

Pictures were taken. I saw the spot. It was huge…. on the screen, that is. If you’ve ever seen a picture of your eye, imagine a spot 2 to 2 1/2 times as big as your optic nerve circle, and an oval shape, with the tail extending over your macula.

We were sent back to the room and we could hear the doctor talking with someone. Little did I know, that was the eye doctor there that specialized in diabetic eye diseases. He came in and showed me the screen. He went over what was going on and what happened. Then he said the words I had dreaded I would hear :

This is diabetes related.

It’s Diabetic Macular Edema. Basically, the vessels are leaking fluid around my macula. What I don’t understand is that he didn’t see any blood, just fluid. Either way, I am to go back in a few weeks to meet up with the doctor that specializes in diabetic eye diseases and find out where to go from there.

Right now? I’m going through a whole mixed bag of emotions. Part of me is confused – I just went to the eye doctor near the end of February and they said everything looked fine, yet he said this was something I’ve had for a while now… how long is “a while”, exactly? A few weeks? Part of me is blaming myself – that I could have done better. That this is my fault for slacking off over the past few months. Part of me is angry because I know that I could have wonderful control and complications could still arise because that’s how diabetes is… it’s a evil, silent, slow destroyer. And another part of me is thinking, “You know, you’ve kicked diabetes’ ass for 25 years. Things happen and there’s nothing you can do about them.”

So, now, we wait. And pray.