I started having symptoms of what I thought was anaplasmosis on Tuesday, June 24th: my half birthday, no less. Turns out it was anaplasmosis and Lyme disease, and I have had a stomachache since that day, every day, without fail. It is becoming frustrating and demoralizing. A monthlong stomachache!
In good news, I followed my doctor’s advice and started to use heat to help with pain and have been taking very, very hot showers. Almost immediately they stop the nerve pain, as if my body gets distracted by the heat from the pain and all the attention goes to it observing, “wow it is hot and that feels good!”.
I woke up at 4am this morning with a stomachache. I also have edema, as of two days ago, which either means the bacteria is causing it, or one of the medicines I am on is causing it. I tried and failed to not take any pain medicine last night, even though I have to say that the pain is much better than it has been.
This is a journey, and a difficult one at that. No one seems to know much and every time I ask they all say, “everyone is different?” and while logically, biologically, I understand that, it is a very annoying thing to say to someone who is just looking for answers as to why her stomach has hurt every day for a month, and why now her legs are swelling so much that squatting down is uncomfortable and feels like I am wearing a pair of tight pants.
My doctor also told me to keep a positive attitude so here goes:
Super thankful for Cody cooking dinner last night. We made polish sausage and cabbage and I wonder if the cabbage has made my tummy upset. But it was so delicious and our first cabbage from the garden!
Super thankful for my devoted doggo, Oscar. He never leaves my side.
Super thankful for my cute and sweet and not stressful job. I could not teach and go through this at the same time, no way.
Maine summer and the garden, even though I can’t go in the sun.
Flowers! Stars! Winds of change! All of the natural processes that go on around me while I wonder when this will feel better.
It is now 5:58 and I am wondering if it is worth it to try to go back to bed, but my stomach says no. I hope you’re well out there and helping me ideate a tiny bazooka for all the ticks.
Current feels: meh? The mornings are usually ok as long as I follow —
Current regimen: Get up, drink water, eat something and take medicine
Current prescriptions: Doxycycline twice per day, Ondanestron/Zofran once per day in the morning, Gabapentin 100mg up to 3 @ 3x day, 1 Advil with 2 Tylenol twice a day, probiotics one hour after Doxy, Grapefruit Seed Extract, Fiber, Chasteberry & Cat’s Claw
Conclusions: Tick illnesses are whack and you have to pay very close attention to them.
I have been suffering from extreme pain, weakness, and fatigue especially over the last 10 days. I started antibiotics 11 days ago, so I should be feeling better but by two days ago, I realized I was getting worse and not better. I called my wonderful doctor and she talked me into taking Gabapentin (“But Maddrey I don’t want to take a whole bunch of drugs dude!”) and it helps, so much. The pain I am feeling is in my upper back, from my shoulders down to the bottom of my rib cage. It is such a strange and specific pain and very intense, like burning beneath the surface of my skin, all through my tissues. I hate it!!! I had shingles about 13 years ago and the fatigue of this reminds of shingles, but this is not shingles.
I have often said about my self that my brain/mind is strong and good, my heart center is good and loving, I am working on my emotional health and my tendency to copy parental patterns of controlling codependent behavior (what a challenge! But I think it is getting better), but my bod! My bod sure likes to get illnesses and I am hoping we can work on that as well. I am not sure why I am so sensitive to illnesses, but here we are.
As I listen to my surroundings, I hear the song of many birds, the hum of summer traffic on the road, and the wind moving through the thousands, millions, of trees on our land here in Maine. Every year, later than I would like, the leaves come back to the trees after months of absence. One day, they are tiny speckles of lime green, and the next, there are millions, billions of lime green leaves dancing in the air. Just before that, the birdsong comes back with the birds, and the silence of a wind-whipped winter is over. I love sitting outside in the wind, in the sun, in nature, in this tiny sliver of peace and paradise: a small house, green, with a nice porch, and plants all around.
I started feeling really crummy two Tuesdays ago, but couldn’t place the feelings; was it bad hummus? Had I drunk pond water on my Monday swim when it was so hot and clear the only thing to do was to swim? Or perhaps I had done that on my Tuesday swim, when conditions were similar only cloudy? On Tuesday evening I started to feel like there was a rock in my belly, or a beach ball, or something that was taking up all the space that I usually fill with tasty things like roast chicken or tacos or muffins in the mornings. My belly also became swollen out like a little kid’s. Usually my tummy is fairly flat with its fair share of mid-forties curves and wrinkles. I have been exercising alot on my elliptical and feeling proud of being stronger and my tummy flatter. But no longer. On Tuesday evening I tried to eat dinner as normal but barely ate half of it, saying I didn’t feel super well. I thought: tomorrow will be better.
Wednesday came and went and the stomach trouble became worse: it hurt very much and was very uncomfortable, and with it came this weird back pain across the whole top half of my torso. I had a hard time standing or sitting for long periods of time. If I could lean back, I was ok. If I could lie down, that was better. I was annoyed.
On Thursday I thought I caught the chill of a cool day that followed a few hot ones, but as I drove home from the gallery I recognized the familiar feelings of a fever. By the time I made it home, I was shaking, cold, and feeling rotten. So began my days of spiking 101 degree fevers (high for me as my normal temperature is about 97 degrees), breaking fevers into crazy sweaty messes, and the realization that something was wrong with me.
On Friday I managed to get in with a random doctor who told me that she thought I had a stomach bug that was roaming around. I asked her if she would run a tick panel just in case, and she said yes, so we did. I took the rest of the day to chill out, thinking I might be feeling better til the fever started again.
On Monday, I went to my regular doctor and told her I was worried I had a kidney infection and she said she was worried I had Lyme disease. Luckily, the tick panel was already being processed, and on Tuesday, she called and gave me the gross and terrible news that I have anaplasmosis and Lyme disease, together.
Blech.
She also told me I have to take antibiotics for at least 30 days and they are these fun ones that cause you to sunburn so easily you can’t really be out in it. She apologized for ruining my summer (I blame the tick, personally). And since Monday I have been taking two types of antibiotics, twice a day, and probiotics 1 or 2 hours later. I felt better on Thursday, and then yesterday I felt bad again. Today is Saturday, and I am very tired. I wonder if I am now feeling tired from not eating enough, because one of the things with that stomachache from Hell is that my appetite has gone on vacation. Somewhere good, I hope.
One of the strange emotional responses to these illnesses is that I am determined to not sweat the small stuff. That feels good, like I am doing something right in a situation that I cannot control at all. Anaplasmosis is super scary and can kill you in various ways (spooky!) if not treated early, so I am proud of myself for going to the doctor. So in the vein of not sweating the small stuff, I am trying to be a nicer version of myself, more understanding, and quieter. I am trying to spend time thinking about what I think about the state of the country, but not react to it as much as maybe I have been. I am thinking about the importance of creating art in times of dread and sadness, and trying to be participatory in that process.
The energy level is the challenge. Fatigue is real with Lyme and anaplasmosis. I haven’t felt this fatigue in a long time, but I am not unfamiliar with it; legs made of lead or concrete, not strong, dragging through space. I would like to go swimming or maybe just sit in a lake. Today is hot and I hope to fill up our cowboy pool with the cold, cold well water that comes from deep within the earth. I plan to put it on the leechfield, on top of the septic field; I think it’s mostly harmless to that process going on below. Last year when I filled up a giant pot to dip in on the hottest days, the water was so cold it was shocking! (There are photos to prove it!) This year, I will fill up the stock tank and let it sit for a day or two to warm up before I dunk myself in. Over by the leechfield I have planted lots of medicinal herbs and witchy plants, as MOFGA told me I could plant shallow-rooted perennials. Over there we have hops, madder, weld, motherwort, marshmallow, thyme, yarrow, blue vervain.
Ho hum. One of the good things about having peaceful, slow hobbies is that when you are slow yourself, you can still do them. Today I want to work on jewelry, so I am about to head to the studio to do just that. I am working on a series of rings, and I need to order some materials for a custom project I am working on. One of my recovery plans is to wake up early and write in the mornings, as I have much more energy when I wake up than when the afternoons roll around. By then, I feel quite ploddy, like I am going through mud, mentally and physically. These illnesses don’t make me sad, exactly, just tired and a bit disappointed. I like having lots of energy, high vibrations, and excitement. I am sure those will all come back; I just have to let this ride out.
Current projects are:
1.Working on the second edit of the book and finding all the photos that go into it
2. Power rings of various interesting stones and two pendants for a show in August
3. Finishing the third quilt in a series, photographing the three, and sending them to their destinations. The third one has no home, so I wonder who will claim it?
I am drinking coffee now, still listening to those same sounds but the wind is stronger, the sun higher in the sky, the air is warm and dry. My living room is orange and bright with sunlight. We are on new journeys in this life, new career paths, so much exploration! We asked for an adventure and we got one! Who knows what the future holds, but we have managed to pay for everything so far, and I can only hope the blessings continue and continue to grow. Every night I look at the vast spiderweb of stars and ask them to keep helping us, protecting us, guiding us. The Big Dipper right now is just above the driveway and, every night, reminds me that “my cup runneth over” and ain’t that the truth.
I hope you are well, wherever you are, and if you are not, that you can figure out some ways to make it work while you are sick.
Paciencia, Paciencia 