So, I’m going to start off by telling you there are some icky pictures on this page of incisions and bruising around my eyes. You’ve been warned!
Now you’re like hold on a second… incisions around your eyes!? What did I miss? I have been keeping a secret. I am not sure why other than I didn’t want everyone worrying about my little surgery. I also had a superstitious feeling about telling the masses somehow leading to a different outcome (I know, crazy). You may remember how I kept referring to trying to stay in a flare for some testing (this was starting back in March)? The testing included a Gallium Scan which showed lacrimal gland inflammation. My eyes had been hurting quite a bit for awhile, but the local ophthalmologist back in January had said they were fine and I was probably mistaking a headache as eye pressure and pain. I asked how come it hurts to touch my eyes through the lid if it is a headache (headache, not ocular migraine) and he said headaches do strange things. Yeah, I know. Anyways, I decided since I was not about to go blind, I wouldn’t worry and just added it to my list of daily symptoms unexplained by POTS and EDS. I never do that, but this time I did. A month or two later, I had a Gallium Scan ordered by an Infectious Disease doctor in hopes of identifying the source of my low-grade fevers and the lacrimal gland showed up. One thing lead to another and I ended up at The University of Illinois at Chicago Eye and Ear Infirmary (I am told one of the top five eye centers in the country) getting a biopsy this past Wednesday.
Our hopes are that whatever has gotten into my lacrimal glands is the same autoimmune type issue that is causing my fevers, lymph node swelling, and abnormal amount of fatigue even for my known conditions. There is no guarantee they biopsied the exact area of the gland experiencing issues or I will get any sort of answer, but we can hope! When you hear biopsy, you may think of a needle aspiration or a tiny little slit. The unfortunate part about my lacrimal gland biopsy is it required them slitting my entire eyelid open, but oh well! (Note to self: Moms like to know the length of the entire eyelid is being cut open before rather than after the procedure.) If this is what it takes to get some answers, it really is nothing compared to what I’ve been through. Biopsy results will take about a week to get back. The person who did the surgery is called an Oculoplastic Surgeon (Dr A) and all he does all day is surgery on/around the eyes which was comforting. The incision pretty much runs along the crease of each eye, so I’m hopeful the scar will not be too noticeable and EDS will not prevent it from healing nicely.
My parents took great care of me while Jake worked the day of and part of the day after surgery, then they passed the baton to him. As always, he has been wonderful. I have been scolded for doing any sort of bending or lifting. He has taken the couch because when he rolled around while sleeping, it was causing me to roll onto my eye. Ouch for my eye and ouch for his back!
That’s all for now because my vision is pretty blurry, I’m quite tired, I have to hold my head weird to look at the screen, and my eyes hurt inside and outside, so the computer is not my friend right now. I am being kept quite comfortable and this is not even 1% as bad as getting my tonsils out was. I can sleep in few hour stretches. I’ve got good oral pain killers, oral steroids, oral antibiotics, topical antibiotics for the incision, and antibiotics to put into my eye.
Last chance to turn around.
Update: I didn’t post this after writing it Saturday. I decided to wait until today when I had at least partial biopsy results to share. The next post can be found here and is about the results.