Cotton Wool Spots

The single most difficult problem with fibromyalgia or any chronic pain condition, other than the relentless pain  itself, is figuring out when to seek help for that pain or any discomfort or unusual sensations your body may be offering. I have a general rule – don’t go to the ER unless I’m unconscious or hemorrhaging. I’m actually more reasonable than that, but it’s close. Another rule, don’t go to the doctor unless something has persisted at least a couple weeks and/or it’s interfering with work. So many times, I’ve waited and waited and put up with problems, only to go to the doctor, have them find nothing, and then the pains resolve all by themselves. Money and time wasted. At least, however, I know when I feel a certain set of pains that I can wait. That’s the pain that was thoroughly checked out and it was nothing. It will go away. the problem is that being really unable to seek help when I feel like I might need it causes some serious anxiety. After all, in 2002 I had a massive pulmonary embolism that came very near to killing me. I had waited months before getting help.

Funny thing is the anxiety comes more in NOT finding something than thinking the doctor MIGHT find something. I’ve said more than once in all seriousness, I’d prefer the doctor find SOMETHING, a tumor, anything that they have a shot at fixing, rather than find nothing and give me the “we don’t know what it is you’re feeling and we can’t do anything for you; we understand how difficult it is [no you don’t] but it’s not x, y, z and you’re on your own” talk. I love doctors, I really do. I find 99% of them wonderful human beings – incredibly healthy human beings – who really do want to help. I’m a source of frustration, but I’ve only had one or two just shut down on me when they figure out they can’t figure me out. Maybe my anxiety comes in the possibility of seeing that shut down. After all, in 2002 shortly before I woke up on my bathroom floor with a massive pulmonary embolism, a doctor shut down when he saw the fibro diagnosis in my chart and sent me home without taking me seriously when I said something was wrong. I saw it in his eyes.

So this weekend I spent the days trying to find the hair that was hanging in front of my left eye. I have short hair. My bangs don’t hang in my eyes. Maybe it was an eyelash. Nope. So yesterday morning sitting in my office trying to push the non-existent hair out of my eye, I struggled with the question. To call or not to call. I wasn’t horribly uncomfortable. I just knew something was wrong. I called, and the ophthalmologist’s office said they’ll triage my question and they’d get back to me. I hung up and went on with my normal day, expecting not much. About 15 minutes later, “Can you come in right now?” Huh, sure.

Five hours of testing and imaging later, of course there was no detached retina. But there is a spot, an odd spot called a cotton wool spot. It’s somewhere in my eye, looks like a bit of cotton fluff, right near my optic nerve. It’s not that big of a deal, but it is usually an indication of a more severe underlying condition, such as diabetes or high blood pressure. I have neither. My BP was 138/89 yesterday even after bright flashing lights in dilated eyes. Plus, the imaging of my left is a little blotchy or patchy compared to my right eye, a condition (I can’t remember what the doctor called it) which could indicate that my eye isn’t getting proper nutrition or blood flow. That, he said, could be more serious. Not enough nutrition or blood flow could lead to blindness.  So he went to discuss with a specialist who wasn’t quite as concerned as he was, but they decided to run blood tests to be sure of what was going on.

My surprise at the doctors actually finding something melted away into that familiar resignation. Blood tests. There’s never anything wrong with my blood. They’re going to find nothing and then say, well the cotton wool spot will resolve eventually; we’ll keep an eye on it. Indeed my CBC panel came back perfectly normal. My inflammation marker is up, but that doesn’t surprise me or my stiff and swollen joints. There are more results to come, but I’m not holding my breath. The doctor will call when they all come in and say, er uh, well there’s nothing significant in your blood work. So we’ll just observe. Call us if you notice any changes. And then I’ll notice a change and I’ll sit there thinking, is this a change? should I call? will I just be wasting more time and money? It’s like a merry-go-round of indecision.

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