Naming the Illness

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Supplements taken today: Probiotic (extra strong); FemOne; Pro-Omega-D Fish Oil; Monolaurin; essential oil veg cap with Lyme blend (black pepper, oregano, OnGuard, cassia, thyme, and clove); Adren-All; turmeric and curcumin blend; Nature-throid; Quercetin; CoQ10

Meals: Breakfast– Flourless sweet potato muffins; plain Chobani Greek yogurt; local honey; cranberry-walnut Paleo granola; fresh strawberries and dried jackfruit

Lunch– leftover butternut squash soup; grain-free blender bread

Dinner– spaghetti squash with organic marinara and home-grown organic mushrooms

I haven’t told many people yet, but I have late-stage Lyme disease.

Today was a good day. The school calendar gave my husband and me a free day off (I like to think it was retrospectively to honor Leif Erikson Day– not to celebrate He-Who-Must-Not-Be-Named-Whose-Name-Begins-With-a-C Day). I slept until 8:00 this morning and spent most of the day cooking healthy foods, ignoring hurtful political discourse, and submitting poems to literary reviews.

I never know if I am submitting work properly anymore because I can’t keep all of the guidelines straight as I used to do, and the poems hide in the brain fog. Writing is a little like wandering around a dark room with my hands out, trying to feel what’s there. One of the weird things that I’ve observed during the onslaught of this disease is how my writing process has changed from longish, evenly paced, thoughtful pieces to short, more hurried, more straightforward ones. I think it’s just that I have trouble holding those complex connections now; also, I feel rushed, because I don’t know how far this disease is going to go or what else it will take from me before I can control it. My cover letters are probably rife with errors. I don’t go back and look at my submissions anymore because I’d be mortified if I noticed typos. Still, I feel like I got something done, and that means today meant something– it left a mark somewhere.

One night last week, I dreamed I was teaching college again, and that everything was fine. I was walking down the hallway with a stack of papers to grade. I was talking to the other professors about policies or athletics or something. I worked so hard for that job, and I cared about it; it didn’t feel like work. It felt like just something that I did. Because of the worsening of my symptoms– the mix of brain fog, headaches, fever, heart palpitations, stomach problems, fatigue, and joint pain– I have had to get a lower stress job with a shorter commute. One at which it doesn’t matter if I forget words, or if I forget my train of thought. I’m working now as a library clerk at a junior high school. I’m not sure how long I’ll be able to do even that. I’m trying to come up with contingency plans. How do people survive without an income or health insurance? And with student loans taunting them from the corner?

It feels sometimes like I’m outside my own body, watching this happen. The years of living with this disease, the years of misdiagnoses– if only I could go back, what would be different? When my new doctor ran the tests and found out what I really had was Lyme disease, I was so happy to have a name for what was wrong with me that I cried on the way home. I didn’t know much about it then. That was August 9th.I started researching it, and the more I learned about it, the more I could see the disease woven throughout my life, coloring it.

Now in October, I haven’t figured out how to live with this illness yet. For years I worked through it, complaining to doctors who told me it was in my head (in some cases, even laughed at me), feeling worse every year– then, last spring, everything started taking a nosedive. I was certain that if I didn’t get things figured out, I would die. I switched doctors. I went to labs. I spent a lot of money. And I found out that something was indeed very wrong.

The decline has slowed, but has not stopped. After 30 days of antibiotics (doxy), started immediately upon diagnosis, the brain fog cleared a bit, and my HNK1 test went from 23 to 33 (though it should be at 60+). My doctor, whom I love for listening to me and testing me, seems to be guessing at treatment now. Because there are so few resources available to me in Texas, most of my plan of attack  has come from books and online research, the personal accounts of others like me living clandestinely throughout the Texas Panhandle, and reading blogs. I’m hoping that I can use this medium to help others like me. I don’t know what’s going to work and what won’t, and I have no idea what would work for anyone else. But I can write about what I’m doing, what I’ve noticed, what I’ve heard– mainly, I can let others know they’re not alone in this disaster.

Don’t think there aren’t good things. It has been good to be in a library so much, to be reminded of my first, wild love of books. It has been good to see that my husband is truly a hero.

My dream is to manage this. To get back to my career, both teaching and writing. To get back to my little black horse, which I was in the middle of training when the disease flared– so he’s had only 13 rides out of the 45 I planned for him last spring and summer. It has always been my dearest dream to train my own colt, and we’re partway there. We’re so close to finishing. I tell myself it won’t hurt to let him grow another year while I try to heal.

I first experienced these symptoms 17 years ago, which means that half of my life has been spent sick. I don’t want to wonder anymore what would have been different. I don’t want this disease to be my one regret. I have to figure out who I am apart from this illness.

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