You've come a long way baby

August 1, 2009

Yesterday I had an ophthalmology appointment in the morning. When I was in the hospital last year some funky things started happening to my vision as a result of either the high doses of IV steroids I was on, or the cyclosporine treatment I was on, or all the straining I was doing on the toilet. I'm really not sure which. But beginning during my hospitalization I saw large brown spots out of my right eye, and any light made my vision pulse. It was strange. An ophthalmologist saw me in the hospital, and then I followed up with some tests and visited with an ophthalmologist after being discharged from the hospital too, but honestly, I didn't understand what it was all about. I didn't try to understand either. I just did what I was told. My mind was so hazy during that time. I was easily confused and couldn't verbalize very well (hard to believe, I know). There were so many times that when doctors were around I would just look to Jeremy with this helpless look on my face, hoping that he could speak for me. And he always did. (God I'm so thankful for him.)

So yesterday I was in a better state of mind. And I learned a lot. Apparently some test results from last year showed that I am at high risk for glaucoma. (Until yesterday, the only thing I knew about glaucoma was that it had to do with your eyes.) I have to go yearly to be screened and tested as a result. Apparently with glaucoma, once the damage is done there's not much you can do. (But really, I'm just beginning to learn about this.) I have to keep reminding myself that I'm only at high risk - I don't have the disease right now.

I asked Dr. U what caused this? She told me that Hispanics, African Americans, and people with a family history of glaucoma are at the highest risk for the disease. To my knowledge, I have no known family history of it. She said there was some asymmetry in my test results that made her more concerned than she might have otherwise been. Anyway . . .

She dilated my eyes (Jeremy and I joked that I was having a different type of dilation than I normally had on Fridays!) and checked me out. We scheduled a time for me to come in for the annual field vision study, and Jeremy and I left. But last night I started doing some research. What I found was that glaucoma can be linked to being on long-term steroids - which I was on last year. I knew steroids could cause vision problems, but I didn't know it was certain types of glaucoma.

So all of this is to say, I felt overwhelmed last night. It feels like this is yet another reminder of all that I have been through - and it will be a continual reminder. And yet another reason to be afraid. What if I lose my vision because of this? I just can't go there though. I can't be afraid of that. Jeremy said this morning, "Remember Abby, you don't have glaucoma. You're just at high risk for it." That's right. I don't have it. Let go Abby. You can't control this. Man, it sucks not to be able to control things, doesn't it? (Smile)

I asked Dr. U if ulcerative colitis can affect vision in and of itself (not just the medication side-effects). Yes. It can. It can cause inflammation in the eyes. I already have some inflammation in my joints as a result of UC. Ugh. But again I tell myself: Let go Abby. Let go.

Part of my frustration in all of this is that I didn't understand what was happening when I was sick. I didn't understand that this caused that. It just felt like all these things started happening to me. I felt so helpless. I kid you not, I did not understand that ulcerative colitis was a disease until after my colon had been removed (almost two months after my diagnosis). Dr. I came in my room after my surgery and said, "Ulcerative colitis is a lifelong disease." What?! All along I had been thinking that this was some illness, like the flu that if we could just find the right treatment it would be cured. I didn't understand why they were sending me home still so sick, having diarrhea and on high doses of steroids. I didn't understand why they gave me a blood transfusion thirty minutes before they discharged me. How could they do that and let me go? Didn't that mean I wasn't cured?

And it's not like my doctors didn't take plenty of time every day to answer the questions my family and I had. They did. And it's not like Dr. U didn't answer my questions yesterday. She did. And it's not like I'm a stupid person either. I'm not. But I think doctors are so used to talking about the conditions that they deal with that they forget that us normal folk don't have the same knowledge base as they do.

Looking back, I wish someone had sat down with me and started from the very beginning, talking to me like I was five years old, explaining every part of ulcerative colitis to me. Oh yeah, and the whole ostomy thing! The nurses brought in samples of ostomy supplies to show me before the surgery, but I really had no idea what I was getting into. No one told me what a stoma was going into the surgery. The surgeons talked about a bag that I would have. I just didn't get it. And I really don't want to blame the medical professionals here either. I fully admit that I was in a very fragile state mentally and emotionally. The medications I was on left me confused. Maybe they did explain things to me, I just didn't get it. And yes, none of this would have changed the outcome of my situation. BUT, it might have lessened my feelings of helplessness. Knowledge is power, is it not?

Okay, so I'm going to try to let go of all of this today. Writing helps. It really does. And on the positive side, this morning Jeremy said to me, "Do you know what the highlight of my day was yesterday?" Hm. I thought through the things we did. I had no idea. "It was hearing you tell the nurse, 'No I'm off that medication now. And I'm off that medication now. And I'm off that medication now.' It warmed my heart. You've come a long way." Ah shucks. I really have. I'm on two prescribed daily medications right now. That's it. Woo-hoooo!