There are moments that as a patient, I lose my patience. I’m losin’ it today.
I’d rather…
The first thing that comes to mind is that I’d rather be at Disney World. I’d rather be at the beach. But could I even make the walk from the car to the sand? Could I even climb in the Small World boat with this stupid AFO? I highly doubt it. That’s just sad. The optimism in me is facing the realism.
I had an unexpected trip to see Dr. F. today. Over the weekend, my eye started bothering me again. Another undiagnosed condition. The eye history stems back to September 2008 and it was in March 2009 that the ophthalmologist gave up and told me “I don’t know what’s wrong with your eye. I have no idea why it’s one-sided (left). But it’s probably your thyroid. It could be an autoimmune keratitis” I was given Tobradex drops and told I didn’t need to come back but should use Tobradex sparingly. I asked if I was a candidate for Lasik “Not until this thing goes away.” Just for the record, I’d rather be getting Lasik surgery.
I did find this link if you’re interested in ocular manifestations of autoimmune disease. It really doesn’t answer any questions for me but does scare my pants off. I’m already hard of hearing can I please be spared permanent vision damage? C’mon.
Left eye June 22, 2009 6:00am
Left eye June 21, 2009 7:30am
So, here it is, eye problem is back. And now, it’s in both eyes. However, I can’t say that the right eye hasn’t been contaminated by the left. I was out of Tobradex. I’ve decided that it’s in my best interest if I document everything related to my health. A lot of things I don’t think much about but I am convinced that without all of the details, I’ll never get anywhere. So, I photographed my eyes yesterday. There was redness in the left and some lid drooping. This morning, I woke with pain in the eye, more redness, swelling, more drooping, and a puddle of goop dried on my cheek. There is pain, disomfort, itchiness, feeling like a foreign object, and the feeling that I just want my eyes closed.
Dr. F. appreciated my photos and feels my eyes were even worse at my appointment than in my morning photos. I’m going to go to a new ophthalmologist who will hopefully repeat my Schirmer’s test and will pick up where the one ophthalmologist in the other practice left off – asking me about Myasthenia Gravis. She is also sending me for a muscle biopsy either with a general surgeon or with a new neuromuscular specialist at a new medical center. Apparently, this doc has a long waiting list.
In the meantime, I will have a summer without a Disney trip, beach visit, or much play with my son that involves more than a seated activity. My mobility has decreased over the past few days and while I push through to work, etc. I simply can’t walk a lot. I can hardly lift my foot of from the ground – it rubs against the floor when I walk. The AFO helps but my leg muscle fatigues out from lifting the AFO. Blah Blah double-edged blah blah.
Dr. F. had my blood drawn today to test my TSH, Free T4, ANA, SSA, and something else that was illegible. She’s curious to see if while my eye and leg problems are especially active if that will change my blood test results. Also, I got a mild Sjogren’s diagnosis in January and she is very curious to see what role that disease is playing despite my lack of dry eyes and “juicy” mouth. We’ll see. I’d rather be doing just about anything else.
Filed under: Uncategorized Tagged: | autoimmune, autoimmune keratitis, patient, undianosed chronic illness
