I should be home right now, enjoying a lovely, cool Sunday morning in the pastures with my sheep and my dogs. Instead I am in Texas awaiting a medical release to get on an airplane.
I’ll start at the beginning. A few years ago, I became very, very ill while attending the TNNA trade show in Columbus, Ohio. It was a terrifying experience, being in staggering pain and very far from home. I came home early, had about a trillion medical tests and was eventually diagnosed with something called HLA-B27. (Technically HLA-B27 is the name of the genetic marker that indicates a set of diseases, but most doctors use it to refer to the condition itself.)
Basically, I have an auto-immune disease in which my immune system has determined that my eyes are not part of me, which must mean they are an invader. Since the immune system’s whole raison d’etre is to destroy invaders, it gets to work on destroying my eyes. It is incredibly painful, and I apparently have a particularly virulent immune system because my case has been called the “worst we’ve ever seen” by doctors at the most prestigious eye clinic in the world (I WIN!).
With systemic drug, drops and eye injections, my team of AMAZING doctors have been able to save my eyes, quiet my immune system and send my HLA-B27 into remission several times. And, having been through this half a dozen times in two years, I am well aware of the symptoms and prepared with all the meds on hand to fight it until I can get in to see the doctor.
In addition to the eye team, I see a rheumatologist who keeps an eye on my liver function, gives me regular x-rays to make sure I don’t develop Ankylosing spondylitis, and is always on the lookout for other auto-immune diseases. Because these horrible things tend to travel in packs. Because that’s fair.
Well, the other shoe has, at last, dropped. I have developed a whole new set of symptoms and my doctors are ordering dozens of tests on what seems like gallons of my blood. All the big name-brand diseases have been ruled out; my primary care says that I will most like be diagnose with another series of letters and numbers, what she refers to as “parentheticals”. (Side note: I know it’s absurd to care about such things, but it really cheeses me off that my disease doesn’t even get a name. You can’t ever just tell someone (who doesn’t have a medical degree) that you’re HLA-B27 positive without giving them a half hour long explanation.)
Lately, my life has felt like I’m guesting starring on an episode of House. You know, as the patient with the spectacularly weird and hard-to-diagnose disease.
The thing about having an auto-immune diseases is that it feels like such a betrayal. A part of my body is trying to destroy another part of my body. I am doing all these terrible things to myself and I can’t stop. It’s incredibly frustrating.
Are you still reading? Have I bored you to death yet with all this blah, blah, blah medical talk? I rarely write about this stuff on the blog because A.) I hate people feeling sorry for me and B.) Other people’s health problems are deadly dull.
So why am I writing about it now? Good question. Very good question. I’m not entirely sure myself. Several people have advised against this post but I do feel compelled to keep you all in the loop. You’ve always been incredibly supportive, for one thing. But I also wanted to let you know that I may not be blogging quite as much as I have in the past. I’m still on top of everything but it’s taking me a bit longer to get things done; I definitely have good days and bad days.
Oh, but back to the reason I’m stuck in Texas. When I got up to go to the airport early Saturday morning, I was experiencing a fair amount of pain in my left eye. When I looked in the bathroom mirror, I found this. [WARNING: this picture is GRUESOME! I'm linking to it instead of posting so that those of you weak stomaches won't be exposed to it accidentally. On the other hand, for those of you who are always curious about gross stuff (as I am), Merry Christmas!]
It’s actually not as bad as it looks. It’s a subconjunctival hemorrhage, and according to my mom’s ophthalmologist, it’s the worst she’s ever seen. (WIN! I am so good at eye problems!) Long, long, long story short, there was a lot of concern because it wasn’t clotting, and because the original eye problem (HLA-B27 associated Uveitis) is back, and because of all the new and exciting problems associated with the new auto-immune disease to be named later.
I am back to wearing an eye patch and I think I will be released to fly Monday morning after meeting with an eye surgeon. Everything at the farm is in super-capable hands until then but I miss my dogs and my flock intensely and can’t wait to get home.
As I said earlier, my blogging may be a bit sporadic in the coming weeks. It probably would have anyway, with the first issue of the magazine wrapping up, shipping all the t-shirts and posters and so many other things to catch up on. But I will let you know if there are any important developments.
P.S. Tomorrow I’ll be posting the details of the Magazine Launch Party/Fall Shearing Celebration!
