Category Archives: Lyme disease

Aug3

one way only

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Success! My rain spell worked. Which is to say, I left my laundry hanging out on the line all night. Never underestimate me.

A beautiful friend came to visit yesterday afternoon. I was a bit verklempt. I almost cancelled, but I really wanted to see her. It’s been too long. The overwhelm was only because it came at the end of an insanely busy week. By insanely busy I mean 2 things: 1) I had at least one activity scheduled every day, and 2) I never got a nap all week. I usually nap every afternoon.

As it happened this past week I had 2 medical appointments scheduled which had been weeks on the calendar, and I had to cancel them for more pressing medical issues which required immediate attention. I also had to cancel lunch with my friend on Tuesday as I couldn’t drive to meet her. She was concerned about me and drove the hour out to my house on Saturday.

My house is very purposely located on a spit of land that elbows out into Lake Michigan, affectionately referred to by locals as The Land of Oz. I say purposely because I moved here precisely because it is a destination of some determination, ie; not on the way to anywhere. Nobody just drops in. I detest dropper-inners.

When I moved out here on this precipice of life and beauty I had to drive to the post office for my mail. They didn’t deliver mail here just outside the village limits. Yes, that was 2018. I had to join with 3 neighbors and petition the post office for mail delivery, clear and level a path next to the road and install mail boxes. We get mail delivery now, but not necessarily daily. They will deliver your mail when they darn well get around to it. It’s a privilege, and don’t you forget it. I do appreciate it. I know they are short staffed, and I appreciate having a local post office. Many villages around here do not.

Friday I received a new deck of tarot cards in the mail, so I opened them after lunch with my friend. We sat on my very long, deep sofa (a.k.a. Mom’s Cosmic Healing Sofa) and shuffled, talking, laughing and kvetching…and we each drew a card, which took our mundane conversation in a deeper direction.

One of my many withdrawals in recent years has been from the practice of reading and channeling professionally. Because, well, people. Most people don’t really want to be challenged to grow, to face their shadow, to look at the habits no longer serving them. They don’t want to sit in the present moment until the tears come. It isn’t comfortable. It is, however, priceless. The tarot is so beautifully designed for exactly this work, and I cannot use it otherwise. I mean, sure, you can use it to access any information you want to know. I can astral travel anywhere and spy on anyone. I won’t. I can psychically answer all your questions. I won’t. Those are parlor tricks. As Geraldine Jones would say, “that is not my job!”

During her visit, we talked about my friend’s daughter-in-law, who has also been living with chronic Lyme disease. She is much younger than I and has suffered far worse for much longer. We spoke about healing, but my compassionate friend asked about how I deal with pain and not being able to function some days. I told her it has been my greatest teacher. When I am ill (sometimes on the bathroom floor at 3 a.m.) I pray. It’s the only help. I pray with each breath. All I say is: “Thank you.”

Thank you for this body. Thank you for this pain in my liver. Thank you for my life. Thank you for my home, for this bed, for this sweet feline companion, for my beautiful son. Thank you for my big, violent, fu#ked up family – and for the fight in them. Thank you for friends, long-standing and patient, brand new and welcoming. Thank you…for the purpose this illness serves though I do not understand it. Thank you.

Thank you…”so that I can have this one way, along with every other way, to know that I am here.”

Jan6

a gathering of lost parts

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For decades I’ve been told that I am hard on myself. I’m not convinced. I am unequivocally uninterested in lowering my standards. For anyone. Including myself. If anything, I think that I let myself off the hook too easily.

But perhaps they are referring to my self talk. It isn’t nice. I once had a telephone conversation with my sister about my other sister. She said, “I’d much rather talk to you. At least you don’t start your sentences with ‘you know what your problem is?” I replied, “No. But I do often end them with, ‘what were you thinking, you stupid idiot??!!!!!” We laughed.

How do you talk to yourself? Do you know? Do you catch yourself saying things you wouldn’t say to anyone else? I often start my self talk with, “well, if you’re so smart…” followed by whatever the current mess happens to be.

I will say this changed a great deal when I was so sick a few years ago. I was hospitalized with Lyme disease, and I was in the worst pain I had ever experienced. Intravenous Dilaudid (morphine) was not helping and I could do nothing but lay as still as possible, tears flowing down my cheeks, barely breathing. I remember thinking that I had never been in that much pain. Now mind you, I gave birth to a 9.6 pound baby completely naturally. I’ve had laparoscopic surgery with no anesthesia, and extensive dental work without novocaine. None of those things touched the pain from the Lyme infection.

The nurses who were caring for me that week were so enormously kind. It was dramatic and astonishing to me how different it felt. I felt like a little child being nurtured by a kind and loving caretaker – and I had to admit to myself that I had no conscious memory of ever feeling that way before. I left the hospital days later just wanting to learn how to live more softly. Wanting a softer life. Not an easier life, but softer in all the ways possible. I wanted to eat softer – more fresh fruits and green veggies. And lay in softer, warmer, sheets and blankets. I wanted to move slowly through the world; quietly. I wanted to speak in whispers. Kindnesses…just kindnesses…

I was changed. Sickness does that. Grief does that. I lost a lot of weight that summer; I shed a lot of grief. I have to admit today that I have fallen back into a lifelong habit of being rather unforgiving with myself, let alone others. And I am not happy about that. But today I am reminded that I want to live softly. I need to learn to live softly. I want to find my magic again. Magic is soft. Magic is kind. Magic is a sweet child skipping through the world in awe of life.

I love my life. What do you need to love your life today? Do you have any idea how magical you are?! You are. And I appreciate you.

Sep30

Beam Me Up

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One of the rabbit holes I’m down lately is longevity. Of course, I follow Peter Diamandis, and have for over a decade after reading his book, Abundance: The Future is Better Than You Think. His TED talk of 2012 is life changing. As he often says, just try to not die from something stupid. Apparently advances in medical science are about to give us the ability to live much longer. With improved quality of life…because, well, who would be interested in anything else.

On the surface at least, it would seem this improved quality of life and lifespan are intricately intertwined. And relatively simple to replicate for even us struggling masses. Diet and exercise are key. And good mental health. One of the basic things the doctors agree on – get outdoors every day as early in the day as possible. Hmmmmm….

First of all. Where do you live, Doc?! Here in rural Michigan, well…I’m up 3-4 hours before daylight. Not walking outside then. I have bears, wolves, coyotes, bobcat…inside my fenced back yard. They go wherever they want. Here at the mid-mod ranch, I’ve had to fight off a pair of bald eagles with a snow shovel. They were using my low-pitched roof to hunt from. And at five foot six and 175 pounds I looked like lunch. They were actually swooping low over my two small dogs, but they were staring me right in the eye. I felt endangered.

Never mind the microscopic deer tick that almost did do me in. Didn’t see that coming at all. Does that count as something stupid? I suspect it would, as being bit by a tick is somewhat preventable if you are careful and know what to look for. Aware, as I certainly am now. My son was aware but still got bit and contracted Lyme. Fortunately he caught it right after infected. He had the bullseye rash show up and was able to get immediate treatment. They take this seriously where I live.

Okay. Enough with the doomsday report. Do check in with Peter Diamandis every so often. He will keep us focused on a hopeful future. He is undaunted by my negativity. He talks about a science called Longevity Escape Velocity. It is the study of how to extend our lifespan faster than we are aging. He says we only have to live a little longer in order to live a lot longer, and therefore “don’t die from anything stupid,” meaning anything preventable. I’ll be staying indoors this morning…

Jul20

let’s talk Lyme…

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It was two years ago this month when I was frightfully ill and diagnosed with Lyme disease. What an ordeal. My life would never be the same. I’m remembering it because I am under the weather. Again. And terribly discouraged. It’s the Lyme. Still. It has gotten better these past two years, but it has never gone away; the doctors tell me it likely never will. They tell me I will always test positive. I have recently been told that I will likely loose my teeth due to rapid bone loss. Related? Yes.

This busy summer week in the middle of July I have had to cancel plans with friends more than once. I have neglected housework, garden, my cat, grocery shopping and self care in lieu of survival mode, meaning bed or sofa time. Feet elevated. My joints are swollen and painful and I’m running a fever. I’m clumsy, tripping over my own feet. Have a headache. But the real issue keeping me from leaving the house is the Bell’s palsy. Specifically, my right eye. The right side of my face feels like your funny bone when you hit it – painfully tingly. I was accidentally clocked in the jaw once years ago and nearly passed out. It feels like that. The irritated facial nerve causes my eye to swell and be bloodshot. I could go out with a patch or dark glasses, but the sensitivity to light is stabbing.

I’ve been taken down (but not out, at least not yet) by a tiny insect. These things are not to be toyed with. This time two years ago I was definitely dying, and fast. The 4th of July was a Sunday. I remember it well, because I woke with a big dark welt on the back of my leg. Being 70, I thought it prudent to go to the ER and make sure it wasn’t a blood clot. They did an ultrasound and determined, no, not a clot. Maybe a spider bite, or some skin irritant from the garden. They sent me home with a script for an antibiotic. I wouldn’t fill it. By Monday morning I was too sick to drive to the pharmacy. I was overtaken by the worst “flu” I’d ever had.

By Wednesday or Thursday night I was in trouble. I couldn’t keep any food or liquid down, I was disoriented. I didn’t know what day it was. I had not slept because of pain; I paced the floor instead. I called my primary care physician who insisted (over the phone) that I had Covid, despite testing negative. Apparently the home tests were not to be trusted. Wait it out I was advised. Whatever you do, don’t come here, and don’t go to the ER. Take Tylenol. Clearly I had not described this pain accurately.

Sunday morning, eight days in, I woke with half of my face paralyzed. Afraid I had suffered a stroke during the night, I got my son to take me back to the ER. He would have to help me dress, carry me to the car and set me in, and get a wheelchair at the ER door to transport me inside. I couldn’t stand let alone walk.

In that week since I first visited the same ER with the same doctors I had lost 20 pounds. My ribs were showing. I could barely speak. Sure enough, I was severely dehydrated and my potassium levels were dangerously low (who knew this was a thing?) The brilliant ER physician admitted he didn’t have a clue what was going on, and called in another doctor for an opinion. Fifteen minutes later my (NEW beloved!) doctor walked in, asked me if I’d had a skin breakout in the past week, took a look at the records of my previous visit, looked at me and said, “You’ve got Lyme.”

He told me it would take a few days for test results to confirm that, and meanwhile they were admitting me. I burst into tears. I had a chance now. He literally saved my life. Later I would learn that I was his 3rd Lyme diagnosis that week. The first two were unrelated young children, rushed into the ER by panicked parents when they woke unable to move their legs. Now, you should know, this is a tiny hospital in a village of 1,000 people, with an inpatient capacity of 6 beds. Talk about lucky.

You probably know someone with Lyme. A good friend has a daughter-in-law who has been struggling with it more than fifteen of her 30+ years. My son was bitten a few months after I was and had the distinct bullseye rash. He suffered the same symptoms, albeit somewhat less severe, and still has chronic pain and fatigue. I don’t have to convince anyone that this is a serious problem of epidemic levels here in the midwest U.S.

But it is not – I repeat, not – being properly addressed. Most doctors will tell you that 10 days on Doxycycline and you are cured! Know anyone cured? Me neither. I will tell you that the most help I received was from acupuncture treatments. An opthalmologist recommended sewing my eye shut – permanently. No thank you. I still have perfect vision in that eye. It always feels like it has a wad of cotton in it, but I CAN SEE.

Believe me when I say that I am enormously grateful that I have fared as well as I have with this. Many people contract Lyme and never know what has caused their chronic illness. It steals your quality of life silently and invisibly, and you are just as likely as not to never be taken seriously by a physician. I was diagnosed early and treated aggressively with days of IV antibiotics and antivirals. Not to mention the anti-nausea and pain meds I received that allowed me to s l o w l y recover. Had it not transpired that way, I am certain I wouldn’t be here today.

There is ground breaking treatment available in some of the most progressive clinics in the world, but it is not covered by insurance. Most of the treatment is not – if you can convince a doctor that you need treatment at all. There are hundreds of videos available by people from all walks of life. Many famous and wealthy people have documented their own battles, and told of the years and millions they spent to get well. I don’t believe I’m an alarmist – but this is alarming. Please educate yourself and your loved ones, and push for help if you are suffering. Never settle for medical gaslighting. If you have Lyme, your life is at stake.

May10

Let’s Get Medieval

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I’m kind. Until I’m not. And lately, I’m not a lot. Something happened to me. I’m not sure when. I know it began about a decade ago, living in Manville. Only those closest to me know what that means, but here’s the short version: I was in an unhappy marriage – again. And feeling like an enormous failure for being there. Would I just never catch on? We had moved my elderly father in with us as he could no longer live alone. He came with Hospice care, which is only available with a terminal diagnosis. He would be taken off Hospice before the six months expired. Fortunately, he did not. In fact, he would live another several years.

Then my brother came to “stay” while getting his feet back on the ground. He stayed for three and a half years. He, my father, and my husband (17 years my senior) all hung out together quite happily while I went off to work. Their idea of fun was going to the casino and playing the slots, which they did regularly.

They did not clean the house. I did that. They did not grocery shop. I did that. They did do most of the cooking. Because all 3 of them were “meat and potatoes” men. They ridiculed me while I chopped greens for my salads, laughing accusatorily that I was part rabbit…that never got old. They would ignore any pleas for help, or even kindness. At one point in time I’d gotten myself a camp counselors whistle, which I would blow at the kitchen table and announce, “Ass-hole retraining bootcamp begins now!” They rolled their eyes and each went back to their televisions…I’d have been invisible were I not so irritating.

You know where this is going, don’t you? Suffice it to say I was in my own special hell. Then I became ill. Deathly ill. I didn’t realize how sick I was until I finally got myself to the doctor once I was recovered enough to drive (they were busy) and was told that I was lucky to be alive. Apparently I had a blocked duct from passing a gall stone. Helllllloooooo….

In one of many fever-induced nightmares I had been driving cross country alone and my beat up old car broke down (someone call Dr. Freud.) The creepy desert town I was stranded in had become intolerable. I’d realized that they had no intention of fixing my vehicle. In fact, they were fattening me for the slaughter. I waited until after dark and snuck out my hotel window unnoticed. But I did look back once over my shoulder and saw the arched sign above the road into that town: MANVILLE. And I woke up.

I’ve never been the same since. It took a couple of years to fully extricate myself from Manville. Thanks for asking, but no, I have never recovered. And as my sister would say, now I’m “meaner n’ a snake-bit coyote…” Now I’m a lot like Mother Nature: you won’t like me when I’m mad.

I thought that if I survived that nervous breakdown, I’d soon get back to my kinder, gentler self. It didn’t happen; I’m not the same person anymore. But I did have another health crisis less than two years ago. Another wake-up call. And something remarkable also happened then. Hooked up to IV’s in a hospital bed, the nurses were so very kind. And it touched me to my core. It was as if a cellophane capsule growing inside me suddenly burst and all the bad drained out. I had never known kindness like this. Let me say that again: I HAD NEVER KNOWN KINDNESS LIKE THIS. I’m sure it’s been offered many times throughout my life. But I hadn’t really understood it until then. Perhaps we can only assimilate kindness proportionately to the hostility we’ve been faced with. And until that day I wasn’t ready to let that in, to relinquish the bubble that held hostage all my human-ness.

Apr5

…and for a moment,

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when I’m dancing…I am free. I want Bill Nighy as my anxiety. But not really. I want free. Anxiety and pain have gotten the better of me this week. The lab tests came back, still and again, positive for Lyme. I’m not able to do much. Back on meds…ugh. These two remind me that art is the only way out of this mess – mine or yours, physical or emotional. And art is whatever you decide it is; whatever empties you.

I have to remind myself not to let fear take away my peace. This short film was made to help support the artists of Ukraine. Don’t we all feel helpless in the face of the world’s oppressors? And aren’t they oppressing to the best of their ability? My body can’t seem to fight off the bacteria from a minuscule insect, let alone war.

I think I broke a couple of toes last night, tripping out of bed. And I just started laughing (through the tears!) Oh my, how I take life all too seriously. Dear spirit will do whatever is necessary to get my attention. I will put on some music today and dance around if it kills me…and empty out my body and my mind of the debilitating anxiety. Get present. Get here now.

So what can we do in the face of oppression, of illness, of anxiety and worry? How do we switch off the solution driven thought machine and act creatively? Be our souls? We empty, we get outdoors, we go back to the old drawing board, we allow ourselves to be just a teensy bit more generous than feels comfortable right now…we expand.

We B R E A T H E….ahhhhhh. ‘Cause, don’t you wanna call it off?

https://youtube.com/watch?v=ui8kUKuLBaU%3Fsi%3D2GS60zwH8sUDUokw
Apr1

Resisting a Rest

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You will see the name of this blog change soon, to A Painterly Life. Let’s face it, it isn’t a blog about home so much as about life. And the content will broaden. We will venture out to explore the beautiful nature I am grateful to live in and near. We will continue to explore lifestyle, particularly through the lens of an aging woman…a creative woman who has survived incest, near-death experiences, growing up in an extremely dysfunctional family in the wild sixties, profound loss, decades of narcissistic abuse, and who is surviving chronic illness. But mostly, a woman who wants to live as open-heartedly as possible moving forward. Moving life forward will be the theme here.

Like most of us, from all walks of life, we are figuring it out as we go along. Our culture is changing fast – as it must. It’s archaic in so many ways. Those of us who long to see a new far more sustainable world for future generations must make serious and often difficult changes – and quickly – to keep our lives moving forward. To feel relative. We must learn to live as a verb rather than a noun.

“I want to learn to live my life as a liquid.” – Cody, Dinner At the Homesick Restaurant by Anne Tyler

These days my body and my psyche require an unreasonable amount of rest. I do resist, albeit futilely. I have so much to do. I find myself wondering how anyone works and does everything else, but in truth, we don’t. I didn’t. I ignored more than was healthy to ignore. I lived in a constant state of overwhelm. I suffered in silence, but I also caused an unnecessary amount of suffering in my bull-in-a-china-shop charge through life. But I survived. I’m a survivor.

So are you. And I maintain a foundational premise I have adamantly defended since adolescence – that creativity is the only way through this chaos. Art, to be specific. And art is not a thing, it is a process, a way of life.

And so I aver: ULTIMATELY, IT WILL BE THE ARTISTS WHO SAVE US. You’re not an artist, you say? I beg to differ. Do you problem solve? Art. Cook? Art. Sing when alone in the car, maybe even off-key? Art. Notice the lichen on the fallen log? Artist! Love crisp, clean sheets? Know when something just feels “off”? Have a favorite color? Savor coffee with dessert? I can go on, oh, and I will…stick with me.

Let’s talk about this plaque of deep fatigue, physically and psychologically. Perhaps more so psychically. Don’t think you’re psychic? Well, I will prove that you are that, too. And it is required of us now to acknowledge and develop this atrophied gift. It is part of living artistically. It is part of living.

We are human. We are alive. We are artists. We are now.

https://youtube.com/watch?v=JXZzLIjMlcI%3Fsi%3D7gN4ZwNCAGESqKVx
Dec11

The Temple of My Aloneness

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Almost a decade ago I began this blog, meant to be a lifestyle blog, and ultimately an expression of what home has meant to me. But it has often been about the process of my life, about personal growth and healing. It turns out that “home” means something different to each of us, and has common threads that connect us…and that we all FEEL home within. We feel beauty and appreciate it differently – but we all feel it – physiologically and psychically. Comfort is a visual sense of beauty as much as it is physical. Our spirit recognizes an uncomfortable environment as dysfunction; something is off. It matters to our well being. Let’s explore this further in the days ahead, especially as the long dark winter sets in here where I live.

A craving for beauty has driven my life forward when nothing else could. Color excites me, greenery makes me feel alive. Music and birdsong open my heart and the floodgates of tears, both of delight and grief. I’ll welcome it all.

This morning I had seven young deer in my yard. The past year-and-a-half have brought physical struggles with Lyme disease for me, which the deer carry. I will learn to protect myself, but I will not run them out. These deer all looked like young adolescents. Deer hunting season ended a week ago and my guess is that the adults of the herd are gone now. I can’t imagine living on a planet where you are hunted.

I’m using this video to help illustrate some of the ideas I want to explore here with you. Namely, what are the elements that create a sanctuary home – and WHY is this an important objective? I think it’s actually an innate motivation for us all. Pay attention to how you feel watching this – how are you affected by the soft colors and the imperfect surfaces? Sarah Stanley is looking for her home to “lifts the spirits and stir the soul.” A comfortable home is never perfect. Welcome to The Fable:

https://youtube.com/watch?v=nuywWd-vbNU%3Fsi%3DpQuhVs4665403q5Q

“And I thought this is the good day you could meet your love, this is the grey day someone close to you could die. This is the day you realize how easily the thread is broken between this world and the next…this is the bright home in which I live, this is where I ask my friends to come, this is where I want to love all the things it has taken me so long to learn to love. This is the temple of my adult aloneness and I belong to that aloneness as I belong to my life. There is no house like the house of belonging.” – David Whyte, The House of Belonging