Coming to Grips with Another Diabetes Complication

In May, I was sitting at home, working away, when suddenly my heart started racing. My chest hurt, my shoulder hurt, my neck felt as if someone was squeezing it. I was trying not to panic because I knew it would just make things worse.

Frantically, I searched for the symptoms of heart attacks in women. The worst of the pain was in my neck region, which didn’t really fit anything I found.

It didn’t feel like heartburn – I had experienced many levels of heartburn before, so this wasn’t it. It went on for days. I suddenly couldn’t drink soda or flavored drinks or eat very much without chest and throat pain. Many foods just didn’t work with my tummy any longer.

I called my primary care physician and went to him that day. I described what happened, and all he could say was it was possibly GERD. So, since I had already tried things like Tums and Zantac (on a whim), he said to just start taking Prevacid and see how things were. If not any better in two weeks, to come back.

Two weeks later, still in pain, I went back, and he simply said: “Okay, let’s try another brand”, so we went to Nexium.

Two weeks later, I was back. It’s still not helped as much as I would hope, although it was a bit better. So, the next step was an upper endoscopy. We had already checked for H-pylori and celiac, both of which came back negative.

The upper endoscopy came and went, and although the doctor told us “all was clear”, it did reveal a small hiatal hernia. When looking up symptoms, it did answer a LOT of questions.

So, the diagnosis, for the time being, was GERD (even though I didn’t feel any “heartburn” caused by the hernia, and likely what I felt was an esophageal spasm, which is triggered by GERD, and can be very painful and explain the sudden heart racing experience. Just like a strained muscle, it can take a long time to get better.

I was given another medication, Carafate, to take before meals to help even more since the Nexium still wasn’t enough, and was scheduled for a gastric emptying scan. The doctor wanted to rule out gastroparesis before trying another medication that would replace both the Nexium and Carafate, but can’t be taken if you have gastroparesis.

I went in for the scan thinking all would be fine. I ate the egg mixture and took my picture. I waited for the next picture 30 minutes later… and the next and the next…. up to 2 hours. The tech was nice, but also had me concerned, progressively asking questions as we took more photos: how long have you had diabetes? Do you know anything about gastroparesis? Do you take any medications to slow digestion? How well controlled is your diabetes?

At the 2 hour scan, I didn’t meet the requirements to stop the test. Nor at 3 hours. And not at 4, though, they stop the test anyway.

I knew what it meant, but I didn’t want to think about it. I had already been searching Google to know the criteria. I knew I hadn’t met it, but I didn’t want to *know* it. All I could think was I had failed. Another complication. Another failure in my medical history for doctors who don’t have a clue to be able to judge me by.

It took over a month to get the “official” paperwork because the gastroenterologist went on vacation for an extended period of time when I the day after I had the test done. I finally was able to get the paperwork:

Mildly Delayed Gastric Emptying

In other words, mild gastroparesis.

Which means, I can’t take the other medication.

Which means, I have both GERD and mild GP – both of which are associated complications of having diabetes for a long period of time.

I have learned that I need to remain on Nexium probably for the foreseeable future, which isn’t terrible. I’ve also learned the hard way that keeping blood sugars under 150mg/dL for *me* seems to keep away the GP symptoms (that I didn’t realize I even had until I was beginning to feel better).  If I don’t do those two things, I begin feeling miserable again.

I’ve also learned I need to give up on thinking its just a short-term thing. I thought I would be ok after I forgot to bring my my medicine on my trip to Vienna, and by the last day of my trip, I was not feeling well at all. I had also been higher than usual due to my stress of traveling, so both the mix of being in the 150-250 range just made for an uncomfortable time. Food was not my friend. I didn’t let it stop me from enjoying my time there, though.

So while I do have two new things to add to my list of complications, I’m very appreciative that they are not severe. I’m thankful that they are something I can live with and know how to take care of, and I know that there can be flare-ups (like I have right now due to my own fault), but it’s not something I can’t handle. I’m also very thankful to have the 670G pump because it has helped me TREMENDOUSLY in the last few months that I’ve been in auto mode.  The lower amounts of swings in my BG has helped to cut down on the symptoms, which I will be forever grateful.

I know I’ve been silent, but it’s something I wanted to process on my own. I’ve had to work through a lot of guilt. I’m thankful to have very close friends who have helped me deal with the mental aspect that comes with this new world as well.

I’m ok. I’m not going to let it get me down. I’m still determined to live the best I can.

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.

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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.