Category Archives: Uncategorized

Early Morning Wishes

Posted on by
Reply

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

Posted on by
Reply

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.

Posted on by
Reply

It was dark. We had cooked lamb chops, “good lamb chops” that she had gotten from somewhere like Central Market. We cooked them on the giant, beautiful, expensive Viking range in Tina’s kitchen. Tina was out of town so she was staying in the big house and I went to stay with her. We cooked the lamb chops, 3 minutes per side and then two to finish them off, and I think we made a salad but I don’t remember. We drank light French red wine out of tiny beautiful glasses and I think it was our last dinner together.

I helped her up the stairs; she was sleeping in Tina’s room on the second floor of the old house. You had to walk up a tight, tourney staircase, so I walked her up and spent time with her in the bathroom as she got ready to go to bed. She washed her face and put lotion on her hands and brushed her teeth. She was so tiny; tinier then than she had ever been before. No hair but still that beautiful, beautiful face, that beautiful beautiful spirit that shone through everyday. I got her into bed; all the sheets were white, the walls were white, everything in that room was very light and I think she really loved sleeping in there.

The day we shaved her head, it was in that room, too; I think she had some sort of connection with that space. With how high it was above the ground, with how open and airy it was. She always loved a light-filled space. I looked in her eyes as I was sitting in bed with her. I could see the light of the lamp reflected in her eyes, and there were tiny white plates suspended in the black centers of her eyes. They almost looked like those glints of light that teenagers put in their sketches of characters when they’re first learning how to draw cartoons: these tiny points of light that are supposed to tell the viewer that their eyes are twinkling. But in this case her eyes weren’t twinkling, those little plates were matte, deep, solid somehow: they collected the light. I hadn’t noticed them before and took a while to stare at them and try to figure out what they might be.

After she went to sleep I went back downstairs and called Vonda and told her that Maryann’s eyes looked strange: that there was something floating in them. At the time I thought maybe it could be something to do with medication or cancer, I just wasn’t sure. All I knew was that there were tiny plates floating in her eyes. Later, I learned that those tiny plates were ammonia crystals floating in her eyes, teaching us that her liver was failing very quickly. She had been on chemo for so long, at that point almost 16 years, that the chemo had changed her liver from the sponge it’s supposed to be to something resembling a rock; nothing passed through, nothing was filtered out, and so the ammonia that builds up in our bodies naturally, everyday over time, had begun to build up in her body and was reflecting through her eyes.

Today I’ve been reflecting on my own current illness which also has some liver markers going on. I’ve been really thinking about Maryann and that time when her liver stopped working. Maryann is in my thoughts all the time right now; I am convinced she is around me a lot and sometimes I feel her here just watching me and taking a gaze and seeing what’s going on. But this time is different. I feel like she’s just out of reach, but she’s trying to tell me something but I don’t know what it is.

As I lay here on my bed having a day that feels like a setback, after watching a rainstorm, I’m just curious about everything. What am I supposed to learn? When I think about my dear friend Maryann, I miss her so much, but she’s right here. It’s so strange and hard to figure out.

If I could ask her and she could answer I would say what are you trying to tell me Maryann? 

Early Morning Pain Diary

Posted on by
Reply

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

Posted on by
Reply

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 – The Only Thing to Fear is Fear Itself

Posted on by
Reply

Kathleen Bowman is a person who lives in our small community up here in Downeast Maine, and a few years ago, she saved my life.

A few weeks ago, she and her husband came into the gallery with some friends who were staying with them. I didn’t say hi at first as I was talking to one of the friends who was gazing out the back of the gallery at the garden; there is a beautiful, luscious garden of hostas and rhododendrons and a small pond out the back of the gallery, and it is mesmerizing. He said, “do you know my friend Kathleen?” I said and smiled, “Kathleen saved my life”. He looked at me, quizzically, and we walked to go and say hi.

Since Wednesday of last week, I have been experiencing crazy edema in my legs and an increasing sense of pain in my back and abdomen, coupled with digestive troubles. It feels as if my whole system has become locked up and like it is stopped. It is a disconcerting and painful feeling. The swelling of my legs is scarier still, and makes walking uncomfortable. It also reminds me of a very scary time in my life when this happened before, when I was 18 years old, during my senior year of high school. At the time, for months, I hid the edema under the baggie pants that were customary in the late 90s. I loosened the shoelaces in my Vans to accommodate swollen feet. In Creative Writing class, I sat on the couch under the classroom’s tiny windows. I loved that class, obviously. One day, my teacher crouched down near me to help me and friends with something, and she noticed my swollen ankles under my pants and she asked me about them and how long they had been like that. I said I didn’t know and she asked a friend to walk me to the nurse. The nurse asked me the same question, and I said a few months. (Why? I was asked a lot during that time. I was afraid I was dying, and I was a sad and lonely child, and thought maybe it was better if I just did that, quietly). My mom came to get me and I went to the doctor and they admitted me to the hospital with a blood count of 1.7 (normal is 7). I spent the next two or three days in the hospital, and it was one of the most lonely times of my whole life.

I know my mom dropped me off at the hospital; she must have. But I was alone at night, and the doctors were assholes because I was (probably) a teenage asshole to them. I watched “Boogie Nights” and didn’t sleep and wondered if I was going to die in there by myself. I was on oxygen, which was great because I could actually breathe for the first time in a while, but thought to myself, over and over, “this isn’t good”. Some friends came, but the best ones didn’t, as it was too scary. It was too scary.

When the edema showed up last week, immediately I became scared; scared of what was happening, scared of the lack of answers, scared of the fact that this entire month I have just progressed into feeling worse rather than better, and scared of having to go to the hospital. My doctor told me on Friday that she wants me to go to Bangor Hospital and not MDI because it is bigger and has more resources. Immediately I was sent into an emotional tailspin that lasted until tonight, when I caught the truth on the wind and spotted the rise of a crescent moon that I could wish upon. I wished for it to help me alleviate my own suffering; my fear of being alone in a hospital at night. At the moment when I realized it, I realized how scared my younger self was all the time, and I remembered when Kathleen saved my life.

Kathleen is an energy worker of a sort; I can’t really tell you what she does exactly. She “tunes in”, she says, and then pictures show up in your head and she asks you to describe them. Sometimes you lie on her massage table and she does something Reiki-like that isn’t Reiki, moving her hands above your body. Over time, I began to trust Kathleen, and then one day it all came clear; the young version of myself, trapped in a cold cave that was made of stone. After a while, she was coaxed to come out of the cave, and the older version of myself was standing there, tall as anything, with a cloak or wings on, or both, and wrapped her in a hug and told her she was safe and could stay out. Tonight, on the driveway, under the moon rise, I remembered that moment, and sighed and cried at my littler self, the one who was so scared and alone a lot of the time. She didn’t deserve it, and she was just a child, and also, she doesn’t need to drive the bus anymore.

All of a sudden, I knew I would be ok and I just have to figure out how to be. I smiled at the moon and thanked her for always being there, right where I need her to be. I felt relief and that a 100-lb weight had been lifted. Now, my stomach is still killing me and my legs are still swollen, but I know I won’t be swallowed up in fear.

I have been in family therapy for the last few months with my mother and brother, and I have learned to appreciate my mom a lot more than I ever have done, but I have also learned that things were more messed up than maybe I realized. I was, after all, only seeing it from my perspective. Now I see things from my brother’s and my mom’s perspective, too. So even though I felt alone and scared so much as a child, I don’t think it was anything intentional on the part of my parents. My dad was actively seeking to maintain a series of delusional stories that covered up hard truths, and my mom was running around behind him, cleaning up. Tonight our therapist asked her why she did that for so long, and my mom said she was in survival mode until she started her career as a realtor. Our therapist asked, then, a harder question, which was “do you think you were really in survival mode the whole time, up until the point when he died?”. Hard truths. How can you parent your children when you are just trying to survive yourself?

Deep thoughts on a dark night. Everyone has told me that Lyme teaches you lessons, and that part of the disease is figuring that out. I learned tonight that I don’t need to be afraid of being alone in a hospital, breathing oxygen, watching bad tv, and being afraid of dying. When we all took care of Mary Ann, we never left her alone. We watched stupid tv and put on makeup and played with Instagram filters and listened to Tupac at 5am when the morning nurses came in. We took copious notes about treatment and laughed as much as we could and made the couch look like a hospital bed so we could be close together and giggle. That’s how my hospital stay will be, if there is one. If I am to die, and we all will, I won’t be alone. I will be surrounded by people who I love and who love me.

What a gift, what lightness. Let’s not stress when there is so much beauty in the world.

Lyme Diaries – Hot Showers & Tummy Aches

Posted on by
Reply

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

Posted on by
Reply

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

Posted on by
Reply

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.

Ho hum

Posted on by
Reply

Here are the difficulties of mid-life. I will be 45 in a few months, and my husband will be 47. Today I was telling a story about jewelry school; a short story about a stone seller on a motorcycle with a backpack full of gemstones, and I realized how much I missed a sense of freedom.

Here I am, almost 45. I “own” a house, which means I pay a mortgage on it every month, and insurance, and taxes. I pay the same in my own life, and try to save money. I work at a friend’s gallery in the hopes of taking it over in a year or so, but all the while knowing that I am not earning what I need to earn to have the life I want. I feel like sometimes I am living in a limbo of the future: waiting. Why am I doing that when I could be actively pursuing the present? But I am doing that, too, going to work every day and enjoying it despite a greatly reduced salary. It feels unsustainable, and like something will have to shift. It’s like I want to live here, but living here is so difficult because there are so few people to sustain the place. So few good jobs, and a seasonal culture that tempts you to participate in it because you have so much time to yourself in the dark and cold days.

I don’t want to complain, and don’t think I am doing that, exactly. My husband who used to be happy and silly is hard and angry now, so upset about something I don’t understand. It’s like the last year has changed him into a stranger; someone who seeks to find something wrong with things. I seek to find things that are right, and to be ok with things if they aren’t. I get mad about the big issues, but all in all, I am happy with my daily home life. I don’t understand why he isn’t, and I don’t understand what is making him so angry.

His coworker was murdered a year and two months ago, and that has something to do with it, although I won’t know what for a long time; that kind of thing takes a long time to process. He became so emotionally entangled with his boss, a man who outwardly seems friendly and engaged, but inwardly has no capacity to talk about hard things. It is as if C feels that he is responsible for his boss’ emotions, when that is impossible. When he said he wanted to go to another, different job, the man asked him to stay repeatedly, and non-sensically, saying things like “I will make all your dreams come true!”. What does that even mean? Why would he say something like that to his employee; it is so manipulative. So is never speaking about the employee who was murdered, acknowledging her death, or offering support if support was needed.

I feel compassion and care for my husband, of course I do. In some moments he seems clear again, with a plan. Sometimes it seems like he wants the future to be exactly what he wants, and doesn’t think about what I might want, and how those things can go together. Sometimes, I wish we had never come here, and sometimes, I am thankful that all these things are coming out. Most of the time, lately, I am just very confused about the state of the big world and the state of my world, and how my world feels so different and off. I am thankful for the experience, but wish it could be different than it is.

Bah! An impossible want; to know what it is one is supposed to do with one’s life!?! How do you ever know?