Category Archives: chronic Lyme

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.”

Jun4

petrichor and lilacs

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My son says, “It is always a Michigan June in heaven.” It’s been a chilly spring. The heat is running this morning in the first week of June. We had dramatic thunderstorms last night and it’s still raining. But I keep a window cracked so I can smell the rain soaked earth. And the lilacs are blooming.

The lilac shrub out back is half the size of the house. I suspect it was planted around the time the house was built, which was 1955. It was traditional at that time to plant lilacs next to the driveway to welcome guests. The driveway has since been moved and the lilacs have flourished. They are spectacular.

I am in bed this morning with a vase full of them on the nightstand, coffee and my laptop, writing to you. Finally, having again been chronically ill for the last few weeks. I am better, but not well. This time I cannot avoid the doctor’s argument that I need to travel to see a specialist. I can cope with pain, but my eyesight is at stake. And let’s face it – the most qualified and well intended medical professionals still don’t have much to offer. The rheumatologist recommends I take a biologic. It is a treatment for symptoms; I want a cure. I’m stubborn like that.

But this morning I lay here breathing in the smell of rain and lilacs. The well fed fat cat is trilling and rolling around upside down on the floor. My son is here making blueberry pancakes and bacon for breakfast. Don’t tell me this isn’t heaven.

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…

Sep13

move along smartly

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Nearing the end of 2024 I am wondering if I will ever “bounce back” from the pandemic. Have you? Do you think there is any bouncing back? I think we are changed forever. I know I am. There are two distinctive reasons I will never be the same, and I would like to share them if you will indulge me. I’d like to hear how it has affected your life. Even if the changes aren’t obviously attributable to the pandemic itself. How has your life changed in the last (almost) five years?

This morning I am needing to chew on the left side of my mouth. I am going through a series of periodontal treatments in an effort to save my teeth. The first treatment was originally scheduled for March – 2020. That didn’t happen. It was cancelled due to the shutdown. By the time we seemed to be coming out of that horrific nightmare scenario and the dentist called to reschedule, I was battling Lyme disease. My face was disfigured by Bell’s Palsy and I was beginning a series of acupuncture treatments for that. Thankfully those worked to restore most of the muscle use in my face, although not completely. Acupuncture is not covered by Medicare insurance. Neither is periodontal work, but they’re both necessary.

The other event that was cancelled that spring was a huge luxurious and much needed mental health vacation. It was a workshop I was scheduled to attend near Scottsdale, Arizona. Led by two of the most revered influences in my life, Elizabeth Gilbert and Rob Bell, the spiritual retreat was titled How to Imagine.

One of my closest friends lives in Tucson and had decided to attend after I told her about it. She offered to share her room at the resort hosting the weekend. But I didn’t think I could come up with the workshop fee, let alone the air fare. When I spoke about it another friend offered an airline credit. I was yet undecided. It would be a stretch financially and I would have to arrange in-home pet care for my elderly dogs.

Meanwhile, it was a local friend’s January birthday and we met for dinner. She was so excited to tell me all about the workshop she had just registered for…you guessed it. By this time I knew I had to go. It was meant to be and I would beg, borrow, or steal to get there. I did a little of each and managed to get registered in time for an early bird discount. Now I had two close friends who would be there, and something inside me knew this held profound healing opportunity.

When the airlines shut down the workshop was cancelled. I’m not sure why, but I have never gotten over the disappointment. Something inside me snapped. All manner of magical synchronicities had occurred to allow me that gift and I suddenly felt like a child whose dreams were never to be. I must have transferred a basketful of grief to this because I was disproportionately leveled. It was the straw…

Subconsciously I had decided that trip would be a pivot point in my life. By making that commitment happen, I could then give myself some unearned or undeserved permission to live creatively that I would not otherwise permit myself to have. I have not yet recovered that authority. Perhaps I won’t.

And here I sit, almost five years later, chewing on the right side of my mouth, still feeling like I’ve missed something. My Mother would say, “move along smartly.” And she was a very wise woman, so…watch this space…

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.