The Dairy Diary

Supplements taken today: Samento (24 drops!); Probiotic (90 billion count / 6+ strains); FemOne; Pro-Omega Fish Oil; Vitamin D3; CBD oil; Monolaurin; Adren-All; turmeric and curcumin blend; Quercetin; CoQ10; Serrapeptase; Pinella tincture (10 drops); Superfood

Breakfast: Cashew almond “yogurt” with blackberries; banana

Lunch: Taco salad (organic kale, spinach, and tomatoes; leftover grilled onions, peppers, mushrooms, and zucchini; a few organic blue corn chips; salsa; and leftover eggplant “queso”)

Dinner will be: Organic, grass-fed beef patty (from cows raised and processed by a local farmer my mom knows) on gluten-free bread with almondmilk cheese and dehydrated jicama chips

As you might be able to tell from my menu today, the Lyme doctor I saw last week told me to eliminate dairy (and minimize fermented foods). I feel like I am just coming out of shock about the whole dairy thing (by the way, I keep typing “diary” instead of “dairy”– apologies if that happens and I don’t catch it). The last time I had dairy was my breakfast yogurt on Tuesday, January 3rd, 2017. I’ve been dairy free for about a week now.

Forget that my breakfast for years has been Greek yogurt and a banana. Cheese has long been my favorite food. When I was five or six years old, I got mad at my parents and told them that I was going to eat all of the cheese in the fridge in retaliation for whatever (I don’t remember even a little bit now what it was that I was mad about). I do remember sitting on the end of my bed in the dark, swinging my feet, happily taking bites out of a block of cheddar while everyone slept. I was quite proud of myself and disappointed when my parents didn’t seem to care the next morning that our house was bereft of cheese.

So when the doctor told me that I had to give up dairy, my first thought was that life was no longer worth living. Through the haze of disbelief, I heard her explain that my immune system is too weak to handle the complications of digesting dairy and fight the Lyme bugs at the same time. Perhaps she could see the horror on my face, because she placated me by adding, “Just while you heal. Once your immune system is back in control, you can add it back in if you really want to.”

I did some research online and could see where she was coming from, but I’ve lived too long with cheese as a bosom and reliable companion to drop it without trying to replace it. Since we were in New Mexico and there are Whole Foods and similar stores there (food paradise!), I went ahead and bought a couple of kinds of vegan cheese. I’ve tried one kind so far, some “cheddar” shreds. It’s okay. Doesn’t have much flavor, but it looks like cheese. I have almondmilk pepperjack to try also. And I found recipes to make my own when that runs out. Yesterday, I made eggplant “queso.” It tasted good with the spices and all, but was not really cheesy. I have a couple of more queso recipes to try, so I’m still holding out hope. Because queso can be used on everything, right? (Picture here an artist’s rendition of cereal with queso…)

I looked for non-dairy, unfermented “yogurt” recipes next, and they were surprisingly tough to find. First, I tried a coconut one. It was difficult and messy to make, and as it was, I couldn’t stand to eat it. I like coconut, but it just tasted like pre-chewed coconut. It was weird. Not at all yogurt-y. I ended up adding maple syrup and cocoa powder to it to make it into a kind of chocolate coconut pudding. That was pretty good, but I don’t know if I’d make it again. Next, I tried this almond-cashew cream “yogurt.” It’s got a nice flavor, and it’s probably the recipe I will stick with for awhile. It was even a little too sweet for me, and the only sweetener it had was dates! I might try leaving them out next time and see what happens.

By the way, I am feeling lighter and a little more sharp than usual. Yesterday was marvelous! I felt well enough to saddle up my reliable 16 year old pony and ride at a walk in the arena for a good half-hour. It was wonderful. We even jogged a little bit near the end– Dunny has a fantastic, smooth jog, so it wasn’t too hard on me.editimg_0149 I was going to ground drive my colt while I had my saddle out– just as a refresher– but I was really achy after going riding, so I ended up just brushing him. I realized it was amazing that I had even been able to get on a horse in the first place. It’s been months. MONTHS.

Today I woke up with my joints screaming, and I couldn’t lift any weight with my right arm. But it was worth it, and I am grateful that I got to go outside and be with my little herd.  Even today, I’m feeling a little sharper and I have a little more energy than usual– I’m just too achy to do anything about it. Is it being off dairy that is causing the difference? Is it the Pinella tincture I’ve been taking for the brain fog?

It’s the first real improvement I’ve felt in months, and I’ll take it. I guess that’s worth going without cheese for a year or two!


A Brief, Boring(?) Update!

editimg_0063Supplements taken today: Samento; Probiotic (90 billion count / 6+ strains); FemOne; Pro-Omega Fish Oil; Vitamin D3; CBD oil; Monolaurin; Adren-All; turmeric and curcumin blend; Quercetin; CoQ10; Serrapeptase

Meals: Breakfast– Homemade Greek yogurt smoothie with chia seeds, ground flax, homemade hemp milk, pineapple, banana, cranberries, cinnamon, honey, and kale (it was better than it probably sounds!)

Lunch– Cauliflower “mac & cheese” (cold outside = comfort food!), Echinacea tea

Dinner– pending

It’s been awhile, and as you can see, my regimen has changed somewhat. I’m taking a break from the essential oil veggie cap because I found out that oregano oil is hard on the liver, and I also cut out the thyroid pill (indefinitely) because my resting heart rate is ridiculously fast (100-120 bpm!), and I was worried it would increase the risk of heart failure. I was able to talk my local doctor into letting me do the Igenex Western Blot at the end of October, and another band showed up on the test– 39, which is Lyme specific. The doctor I was seeing here has since moved out of Texas, but I have been able to make an appointment with an LLMD (Lyme-literate doctor) who has much, much more experience. She’s over four hours away by car, but I am looking forward to getting help with my treatment plan. My hero husband is going to drive me there.

My parents, through their research, found something called Samento that many people seem to have used successfully to get the disease into remission (for those who don’t know, chronic Lyme isn’t curable– the goal is to get it to the point where your immune system can manage it on its own). They are generously buying the drops online for me. I started with one drop and it immediately made me dizzy. It’s powerful stuff; supposedly it knows to go after the bad bacteria and leaves the good bacteria alone. I’m up to twenty-one drops now and I can tell that it’s working. I feel like I have a mild cold all the time and it seems very much like I’m constantly shedding the bugs. It’s taken me weeks to get to the current dose; the goal is thirty drops. The bacteria fight back with every single drop I add!

After coming home from my lower stress job at the library one day and falling asleep in the car in the garage (thank goodness I turned the engine off before that happened), I realized I had gotten to the point where I couldn’t safely make it to and from work anymore, so my last day was November 30th. It’s scary to be completely reliant on others, especially in the current political climate. I am chronically ill, female, and a poet. I haven’t told most people I am sick. I am worried that many people, particularly in this area, will view my life as valueless. I am really frustrated at how little I can do right now. My brain is muck most of the time; everything takes me inordinate amounts of time to get done; I forget things nearly as soon as I hear them. Last week, I went to Natural Grocers (fifteen minutes from my house– not a hard drive, considering we live outside of city limits). I stood in the produce section for a good twenty minutes looking from my shopping list to the racks of kale and beets and things, completely disoriented. It was as if my brain couldn’t make the connection between what was on the list, what was in front of me, and where I was standing. I finally put some garlic in a bag just so I wouldn’t look crazy!

I have also gotten nothing but rejections for my poetry in several months; I’m unsure if this is a cruel coincidence, or if it’s because my mind is such garbage right now. Writing anything is difficult. That’s one reason I haven’t been updating this blog, though I originally intended to do so at least once a week. I do have a  new book of poetry coming out next week– a good book, I think, borne from my grad school creative thesis. I don’t have the energy to promote it, but I’m trying to plan events in a few months when I might feel stronger.

In the meantime, I am home and my body is grateful. I am doing yoga and making my own foods (cheese, yogurt, pickles, granola, almond milk, tortillas, and every number of good things).

Patience. The same as with training a horse. Nothing is personal. It’s all just patience. I know enough to believe that what I’m doing will work in the end.


Naming the Illness


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.