Tag Archives: health

Early Morning Wishes

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Getting hit with an acute cancer diagnosis in the middle of the summer when I would much rather be selling amazing jewelry, meeting people, going out to dinner, and spending time with friends, has knocked me on my butt. My days right now, usually, involve sitting like a deity in my cozy bed, leaning against various sizes and configurations of pillows, with my trusty hot water bottle by my side.

This morning, I got up and grabbed Oscar and walked the loop around our property. I am feeling the need to mark time: to mark days that are passing so fast. How is it the 30th of August? This has been going on now for almost two months; two months ago, I sat at Blundt’s Pond in Lamoine with friends and felt…funny.

Nothing feels funny right now. This is one of the challenges of the moment: brave faces and all. I love when people come to see me and it it truly is sustaining me right now; this love force that I feel from friends and family. It is so amazing; I imagine it as this big pink fluffy cloud-spiderweb with little sparkles in it everywhere. It is carrying me through this most terrifying experience. I talked to my mom last night, asking if she is going to counseling to deal with this as no one knows what is going to happen and it has only been a few years since my dad’s death. I don’t think she quite got the message, but I will try again. It feels so odd to just not know what the next week, two weeks, a month, will bring. As my friend Meg said yesterday, this cancer feels angry and it moves fast. It is scary to feel there is a being in your body, totally out of your control, messing with your everything.

I have been wanting to write more here, on a more regular basis, but have been struggling with energy and focus. I am on a lot of pain medication, too, and the brain fog of opiates is real! We were staying with Erica and Aaron this week in Boston, and he got so upset when he saw the Fentanyl patches in my box of pharmaceuticals. I had to tell him not to be scared, that it is medicine when it is used properly. Fentanyl freaks people out. My pain specialist, Patrick the Angel, just upped my dose yesterday so I will have to really work on focusing from now on.

That’s something I can ask my care team to help with: how to keep focused on Life while treating for cancer. It is much harder than I had thought, this journey. Having cancer is unlike any other sickness I have ever had. It sucks!!! You heard it here first. But, people are super nice, more nice than usual, so that is a perk.

I miss creating things as that has fallen by the wayside lately. I have to get back into that groove, too, in whatever way is manageable. One of the chemo options given to me gives people almost-permanent neuropathy, and I said no because I am an artist and I must be able to create things; it is part of who I am. My friend Ferry wrote to me and said that even as Matisse lay dying and was not able to pick up a paintbrush, he had a team of mentees cutting paper, painting, and arranging pieces right to the end, and that would be me! I have to print that text out and put it somewhere.

There is so much ephemera, so much detritus of our little lives, lingering in corners, piles on tables, the back edges of bookshelves. What makes up a life?

Wishes –

  • my edema in my legs begins to go down and it becomes more comfortable to walk
  • my appetite stays pretty strong so i can have the calories i need to stay well
  • i am my kindest, best, most authentic self with everyone i meet

Gratitudes –

  • Cody – despite some hiccups along the way, he has become the most amazing caregiver and I would be lost without him
  • Friends and family who bring food so we don’t have to think about cooking, even though I miss cooking
  • The pink spiderweb-cloud of love that surrounds me everywhere!

5am – My Life Just Changed

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It is 5am on Wednesday morning. I have been up for about forty minutes, and then I just decided that some people just wake up at 5am, so why not be like those people today? Pain kept me awake alot last night, because I mis-calculated my pain medicine regimen and didn’t take a pill when I should because I didn’t want to sit up for 30 minutes waiting for it to be digested. Ho hum!!!! Here I am, at 5am.

Pain has been the most consistent feature of this cancer so far, although I don’t know if I am experiencing pain because of cancer cells, or because my lungs are surrounded by liquid that is swelling and pushing against them and against my ribcage. I am hoping for the latter, and that we can figure something out to reduce the pressure. I miss sleeping on my side, all snuggled up in bed with my husband, dog, and sometimes, a cat.

Last Friday I was diagnosed with a rare cancer called Mucinous Adenocarcinoma with Signet Ring Features. It is pretty funny since I am a jeweler, and I am experiencing the cancer cells that are shaped like pretty little rings from King Arthur’s Court. I am not sure what those little cells do in particular and need to do some more reading, but I get easily overwhelmed by Dr Google. Right now, as I write, I am moving a hot water bottle around my torso, getting relief from achiness. It works well, but I wonder if there is such a thing as a warming vest? (Just Googled – that’s a yes).

Last week I was diagnosed with cancer. I have cancer. I keep repeating that to myself and it sounds weird every time. I have cancer. I have cancer? What?

When people tell you that you have cancer, they speak really softly and nicely. They treat you kindly wherever you go (especially the pharmacists). What they don’t do is move nearly as fast as you want them to in finding a treatment plan that is going to work and make you feel better. That could happen ANY DAY, by the way. My first appointment is in two weeks. Two. Long. Weeks. What will I do with all of that time? Two weeks of waiting, two weeks of being patient.

Two weeks of writing? Two weeks of drawing? Two weeks of sewing? Two weeks of — anything. Perhaps during these doldrums of time when I am awake with achy-ness and pushing my achy bits against a hot water bottle, I can think about what I would like to do with this time. All of a sudden, I feel that time is ticking, time counts, time is fleeting.

How does one know what to do? Do I get angry? Sad? Vengeful? Wistful? Regretful? I spent the other night exploring regret and plumbing its depths. Do I do the same with the other emotions? It all feels exhausting and confusing and —- futile. But also, not. It is also eminently precious.

Goddammit.

I want to buy a new set of sheets because of all the time I am spending in bed. I ask myself: should I do this? Is this a ridiculous want? And then – why does it even matter? Because I have CANCER. Jeezum.

My life just changed.

Early Morning Pain Diary

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It is 3:37am and I am overthinking pain and I am sitting in my sewing room and writing here, hoping it will dissipate and I can go back to sleep. It is my niece’s 15th birthday tomorrow and I am hoping to go to her celebratory breakfast. On the table beside me is a pill bottle with Oxycodone in it, the pill that works but that I don’t like; I feel it makes me edgy and nervous, and I am already edgy and nervous now.

I found something on the internet last night that said to write when one is overthinking. I find it helps, if only to track the racing thoughts and feelings of pain so that I can reflect on them later. This pain is wild: it starts in my back just below my shoulder blades and goes down near my kidneys then wraps around to the soft parts of my belly, which are swollen. I don’t think I am digesting food well: it feels stuck. I miss enjoying eating and drinking things, and I miss not being in pain every moment of every day. My legs and feet are so swollen with edema, and the swelling stretches all the way into my mid-belly now, misshaping my hips and my tummy and making me feel like I am sloshing around with extra water, 17 pounds of it at the last check. It all feels insane. How has this happened and why is it happening?

It is impossible to feel comfortable almost anywhere. It feels like my body is rebelling against me and I don’t know what it is trying to tell me except that many of its systems are angry, riled up, inflamed, shrieking! I had to leave work earlier today because my legs were so swollen and my back was hurting so much that I couldn’t concentrate and I was worried about being able to drive safely in my mental state. I hustled out the door in tears, apologizing for something that I cannot explain.

I just took one Oxycodone 5mg: I guess we are getting a play-by-play this morning. I keep wondering what this experience is supposed to teach me. I am so confused and clouded by the symptoms of pain and physical discomfort, that the only thing I can pay attention to is how much my friends love me and communicate with me and wish to help. It is so wonderful: I feel like I am in this pink cloud of love, made of all these people who love me and want me to feel better. I can’t believe there was ever a time when I worried about being alone. I have been reflecting on my post from last week when I wrote about my experience in the hospital when I was in high school. Something in my body knew something was up: I was in the ER the next day and now upon this journey which appears to be just beginning.

I worry about how I am going to pay for things now that I am not working very much. Do I call the credit card company and tell them what is happening and ask them to pause for me for a month? What about the student loan company? It seems worth a try as there is no way around how this feels: debilitating. I wish pain pills helped instantaneously and I wish they didn’t mess up my stomach. I can’t figure out if all of these medicines are helping at all. They must be? It is so confusing.

One of the other things I am able to focus on reflecting upon is how many things about health that I took for granted: walking long distances at a fast pace, munching on delicious food that made me feel good inside, sleeping through the night now that I have an Estrogen patch, and drinking a glass of rose with friends on a beautiful afternoon. All of those things are on pause. My work is on pause, and by that I mean my creative work, as I can’t focus on it and have no follow through and not much strength to do anything. It feels scary, it feels lonely, and I cannot get comfortable. My sweet husband has been doing everything, and I feel bad about that, too.

My doctor tells me I have to let go of all of those feelings and be willing to accept help. I am, I think. I mostly feel guilty about Cody having to do everything. But so far, at least to me, he is willing and not too exhausted. Right now, as I sit here typing, I am moving my body back and forth in the chair in a vain attempt to alleviate pain, to stretch something that is taught, to do anything to help. No luck.

Dear Universe, please help me move beyond this pain state, and may the surgery being done Friday be safe and go well and remove some samples that can help us understand what is going on so that my body can heal itself. This is hard, y’all. Love.

Lyme Diaries – It Might Not Be Lyme

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As I sit here in my living room, lots of little birds are chirping out the back French doors, heralding another day, and the morning traffic hums from the road. I don’t mind the traffic, just the engine brakes of the trucks that barrel down a few times a day; our driveway is at the bottom of two hills, and they really go for the brake noise if they are going too fast. Almost everyone is going too fast.

Yesterday I went to the hospital for a CT scan of my abdomen, which had been ordered by my doctor when she said, on Friday, that she “officially did not like this” – this being my set of symptoms that include: whole leg edema, stomach pain, and radiating back pain. I thought I had pancreatitis, thanks to Google. Yesterday I met the amazing radiology tech, James, and he walked me through my first CT scan. My friend Nicole, who also is a radiology tech, walked me through the steps a few days earlier. I was anticipating something that was alot worse than it was. It was quick and almost painless, although the feeling of the contrast going through your body is a weird one; hot, moving, liquid-y , with a spicy taste in your mouth. After the CT scan, I stood awkwardly in the front of our small, rural hospital, trying to decide if I wanted to go to the ER or not. Nieve, gatekeeper of MDI Hospital, asked me if I had another appointment. I told her the source of my quandary. She said, “only you can make that decision. But if you want to, I will call them to come up and get you”. I nodded and started to cry, and soon after, a young nurse assistant named Zabet appeared in the elevator. Zabet is an EMT and a part-time massage therapist, and she wears a mask all the time, as if we are still in COVID times. I suppose we are.

I went to the small ER, a cluster of comfortable purple recliners in a small room divided by green and white curtains. A funny nurse named Dustin with whacky disheveled hair came over and took notes on two sides of a post-it and made me laugh. He sent Dan, the doctor, all of maybe 25 years old, seasonal doctor from U Penn, over, and we talked. Dan somehow managed to be serious without being officious: he was serious, but he listened, and he was kind. We moved into a room and I laid down on the bed. My pain was starting to creep in as I hadn’t taken anything since early in the morning, and it was now noon.

Hot Tip – if you get a CT scan and then immediately to go to the ER, they read your CT scan in about 5 minutes! Dan came into my room and said some words that were a little bit ominous but mostly supportive, “there is something wrong with you, and you aren’t crazy”. He then told me that the scan showed “a lot” of enlarged and inflamed lymph nodes, indicative of something called Lymphadenopathy. Then he said that this indicates the possibility of lymphoma.

In that moment, I time traveled to three-ish years ago, when I went to Texas Oncology with Mary Ann to see her doctor, who she loved, the doctor who always wore tall high heels and power suits even when she came to see you in the hospital at 5am. She was supposed to get chemo that day, but we had a meeting with her doctor first. It was the day when her doctor said that chemo was no longer working, which we sort of knew because her belly was very swollen and she was jaundiced. We at least knew something was off. I reached out to her to hold her hand and she slapped me, not hard. She looked at me in fear and acceptance, and said, “I can accept this”. Yesterday, I heard her speak and in my mind I also said, “I can accept this”.

There was a bright yellow chair next to my hospital bed; the yellow was the same yellow as a pair of her funny Birkenstock clogs that she used to line up in a neat row outside the door of her apartment. I said, “I wish Mary Ann was here”. My mom, who was with me in the room, said, “because of her experiences?”. I said, “No! Because she would make me laugh!”

A few hours later, I was shot full of pain medicine and had had a chest x-ray and was scheduled for another CT scan the next day. I love the radiology tech, so thought it was a great opportunity to hang with him again, and he said the same thing when he came to check in on me. We went home at around 3, and I slept for a lot of the rest of the day. They prescribed oxycodone and laxatives (what a combo!). They work for pain but they make my stomach hurt. They told me to keep taking advil and tylenol, every 6 hours (I have to take them every 4 and am hoping I am not wrecking something in the process). My doctor called at 730 and said she had shown my paperwork to her superiors, and they were elevating my case and referring me to Dana Farber, the creme-de-la-creme cancer institute in Boston. She asked if that was all right, I said, of course! And then I cried.

When I went to the ER yesterday, I didn’t even think that this was a possibility. But here we are. My poor husband is so worried, I stayed eerily calm until 24 hours had passed and then I spent a lot of the next day crying, but that is ok. My trusty steed, Oscar, never leaves my side and all the friends who I have talked with tell me how loved I am and how I am not alone. I haven’t been able to go to the gallery all week due to a combination of exhaustion, edema, and pain. I want to go to work, and I am hoping we can get some symptom management down so that I can. I miss it.

I miss not having a stomachache, and I miss my appetite. I miss red wine in the evenings, and rose in the afternoons. I miss walking at a fast pace, listening to my heart rate increase. I miss feeling like my life force is strong. When I get these things back, I swear I will never take them for granted again.

Today I go to the doctor again, and on Tuesday I get to meet a random doctor who will read the results of my scans. I hope he is as nice as everyone else has been so far. Let’s put that out there.

Love, Patience

Lyme Diaries – Hot Showers & Tummy Aches

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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:

  1. 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!
  2. Super thankful for my devoted doggo, Oscar. He never leaves my side.
  3. 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.
  4. Maine summer and the garden, even though I can’t go in the sun.
  5. 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.

Lyme Diaries – Weird Thoughts

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This is my fourth week of antibiotics for Lyme disease. It appears that I have chronic Lyme and may have had an infection years ago, or months ago, or who knows, that is now flaring up with all sorts of weird symptoms.

One of the big ones is appetite related. My stomach hurts almost all the time, and so I don’t want to eat. Not wanting to eat oversimplifies the feeling; I think my body is telling me not to eat because I feel so sick. But if I tell it no, and eat food, I feel better.

Here we are in the mind-fuck part of Lyme disease: it is like it is trying to trick you into doing things that aren’t good for you. I know that other diseases and conditions can do this, so it isn’t a huge surprise but also — it is? How can this be caused by a tiny spirochete bacteria named Borellia bugdorferi?

Right now I am drinking water with a splash of bitters in it. It is late on a summer night. My back hurts alot but I am hoping a hot shower will help (learned that trick last night). I am trying to not take anti-nausea medicine as it really messes up my digestion, which is already messed up thanks to antibiotics (doxycycline). My solution? Keep taking the Doxy and start to carve small, life-sized charms of Doxy pills. You gotta laugh.

My husband and I are having issues as he can’t do anything about my illness and so is becoming irritated at its longevity. I keep telling him that it bothers me (probably) more than him, but … I just don’t have any energy for anyone even myself right now, and for that, I feel very bad. I feel that it is a major accomplishment that I get an outfit together (with jewelry!), get some food together and get to work. I also feel accomplished that I am able to fake it at work every day, sort of; I am able to maintain and get things done. I hate to feel this selfish, but when he gets frustrated with it, I either get frustrated back or just get so tired I just kind of shut down.

The mind fuck of it all. What IS Lyme disease? No one knows. So many people have it. How is that possible. When might there be a vaccine? When did life get so complicated? Is our country changing irrevocably? I lost another friend to pancreatic cancer last week; why isn’t there a screening tool for it when so many people die of it so young? This life is so mysterious and makes less sense the more time I hang out here.

Sending love to you – I hope you are all right. Hang in there, baby.

I love this sweet song – I am not a super Taylor Swift fan (don’t tell anyone!), but this one really struck me today.

Night Pains

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It is 4:20am and I am writing because I have been woken up with pain, again; this has happened the last three nights. I am tired, and I am sad, and I miss days without pain like this. And the thing is, I am used to chronic pain. I have had it since I was 18 and was first diagnosed with the autoimmune disease that makes illnesses like Lyme and anaplasmosis and shingles so much worse for me: agammaglobulinemia. The constant, chronic pain that I have learned to live with is in my hips and my hands. But this, this is different. I don’t know exactly how to describe it save it is a burning feeling emanating from the bones of my ribcage, lower back, and abdomen, as if there is something slow burning there, like charcoal. It wakes me up and begs for relief. I took one tylenol and two iibuprofen per instructions, and now I wait, as I took 2 gabapentin before I went to sleep.

The doctor’s assistant told me on Friday the pain could be the pain of the bacterial “die off” which I find gross and rude (on the part of the bacteria). My tummy is distended and I have had a stomach ache now everyday for three weeks. I can’t put any pressure on my stomach at all without feeling a lot of overwhelming pain. I feel terrible about this as it means it is hard to hold my husband’s body at night, and hard for him to hold mine, without causing discomfort. Pain is alienating on top of being sad and frustrating.

This is a short entry, written in the early hours of a Sunday morning. I do not know what to do. I surrender to this, but it does me no good as the surrender is simply because I am lost to this pain and lost to a real solution to it. During the day, I can manage it with medication, but at night, I try to sleep. For the first three weeks, it was like my body turned off at night and so did the pain, but no more. I hope we are reaching the end of this, if not, I am worried that we will have to do something different; more medication, different medication, more impactful drugs than what I want to do.

I said this the other day and still think it today; I am so thankful for modern medicine as if we were in the olden days without antibiotics and pain medication. I would be lost. But then I read that the first case of anaplasmosis was diagnosed in 1993 and wasn’t even fully identified til 2003, so it didn’t even exist in the olden days, thank god. I just googled Lyme disease and it has only been around since 1975 so, big whoop, these diseases are of the modern age! I am sure though there are lots of diseases that are hundreds of years old and are miserable without medication.

I am hoping the meds kick in so I can go back to sleep. This is a sad moment, but hopefully it is just a moment that will pass and I will remember it but not dwell on it.

Tick-Borne Illness Discoveries

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Current diagnoses: Lyme disease and anaplasmosis

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.

Signing off to go water plants. xx P

A Tick-Borne Summer

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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.

xxP

Things I have learned

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My grandma was a tiny, little person who lived in a big, detached house in a town called Formby in the north of England. She walked each day to the village, never learned to drive, and was married to my grandpa for almost 50 years; he died just a few months shy of their anniversary. When he went to fight in the war, she stayed home of course, and waited for him for almost 4 years. Occasionally he would send letters and boxes of citrus from the north of Africa. When he returned, they met at Lime Street Station in Liverpool: a place I visited with my Aunt Barbara just two summers ago. My grandma was a horrible cook with a fantastic 1950s kitchen; everything she made was grey or beige and had a similar, floppy, boiled consistency. My grandpa used to say that the Yanks won the war by throwing my grandma’s cooking at the Brits!

My grandma died in 2004 of kidney failure complicated by vascular dementia. By that time, she time traveled almost daily and confused people, places and times. She told us loads of stories that had been secrets and maintained her love and devotion to my grandpa, who had left us 10 years earlier.

Tonight I sit in my dining-sewing room, at my table, staring into my living room and listening to the sounds of the air conditioner. Tonight I noticed that the light is changing, and the beams cast out by a setting sun are gold and pink and at such a slant that it catches, metallic, in the corners of your eyes, forcing your gaze up at an autumn sunset. It is a beautiful time of the year.

Cody and I have been taking care of Cody’s grandma for about a week. Maw Maw grew up in Port Neches, Texas, on Wilson Street, in a tiny green house. Her mother died in childbirth and she was raised by a stepmother and her father. She met Cody’s grandfather in high school when her girlfriend was dating him, but changed her mind and suggested Marie might like him more. They married and he built them a house a few streets over, on Lee Avenue, in 1962. It was a small house with 4 rooms and one small a/c in the window of the childrens’ room. He later expanded it with a second living room and a master suite. She spent 88 years living in such a small area: just two streets minutes from each other. She worked as cafeteria manager at the elementary down another side street, and her house is mere blocks from the intercoastal waterway: a path to the ocean. Last night she asked me if there was anywhere around here to get shrimp. I had to laugh and tell her we are a ways away from the coast. She is sweet, and easy to talk to, and a straight shooter. Taking care of her, however, is quite difficult and takes so much time. It can be a real struggle, and is an experience not understood by almost anyone we know. But there is beauty in it, and in small moments of chatting on the side of the bed, and making small victories in skin care or adjusting medicine or getting someone to stand up who hasn’t for a month.

I wonder what it would have been like to know my grandparents as most people know theirs. I still miss them, despite the fact that I only saw them every few years, and they died when I was still too young to really understand their importance. Despite that, I think of my grandpa and grandma all the time: when I eat cookies, or smell smoke, or feel wool, or eat lettuce, or think of windy beaches, good people, laughing, blue eyes, and true, loving care.