Long Trail with Lyme

Windsor John Davies, October 18, 1937-July 22, 2008

2008-07-23T20:01:00.003-05:00

My Father died yesterday in his home in Nashville. He had been diagnosed with malignant melanoma about 18 months ago.

Those who know me, know that I never had a good relationship with him. So it is deeply ironic that I attended his death. I will write more later when my brain cames back.

School again

2008-07-09T11:46:00.002-05:00

So I'm taking classes again this fall. For about the bajillionth time. These are all online so I won't have some of my Lyme caused school problems of getting to class etc. Sometimes in my school career, I have been unable to go to class due to sheer fatigue. Or else when I got to class I fell asleep. Online looks like a really good option.

I'm not sure what my life holds after Lyme. I've seen real improvement during my drug holidays, so I can at least expect an improved quality of life. I still have another 12-18 months on this treatment, so we shall see. I still want to do the Long Trail. And I will still have children at home for 8 more years.

Fifteen years with the best hubby in the world

2008-07-05T20:48:00.002-05:00

My husband and I just celebrated our anniversary on July 3rd. We had a nice dinner, and I think our new roof counts as our anniversary gift to each other.

For the record, I have the best husband in the world. Its hard to be married to somone with a chronic disease and he does a magnificent job taking care of his family. To be sure, we've had our rough patches, but I couldn't ask for a better lifepartner.

Happy anniversary, my sweet.

The Sun precaution FAQ

2008-06-19T21:09:00.002-05:00

As my readers already know, the protocol I'm on causes exquisite sun sensitivity. As I live in the Northern Hemisphere, near the 45th paralell, the rays of the evil daystar are quite direct and extra specially dangerous right now.

I had a sudden epiphany this week--I realized that I was causing myself real, no kidding, physical discomfort because I have been worried about making other people uncomfortable. This discomfort is evidenced by people's lame attempts at humor and downright obnoxious comments.

Iimmediately, I bought some more scarves and have started experimenting with outfits that cover every last bit of skin.

I don't mind if people ask me questions in an honestly curious or sympathetic way, but its amazing how many people feel the need to be rude to me. These are, I am sure,the same people who feel the need to appoint themselves fatpolice.

So here are the answers to the sun protection FAOQ (frequently asked obnoxious questions) :

Yes, I can see just fine with these glasses.

Even driving

Even indoors.

I have three pairs of glasses 40%, 10%, 2% (meaning that this is the amount of lightthat they allow to reach my eye) or dark, darker and darkest.

Yes I really do need them. They are, in fact, medical devices that block UVA, UVB and infrared.

No they are not fashionable. But then, medical devices are not known for their sexiness.

Yes, Its hot.

No, I am not dressed for the Arctic/skiing/sledding.

Yes, I am aware of what month it is

Yes, I do need gloves.

No, I am not a bank robber/terrorist.

No, I have not changed my religion. Muslimahs do not let their hair show and do not take off their hijabs when they sit down to dinner in a public restaurant
.
No, I am not wearing a burqa. Those cover the whole face

Yes I do know how weird I look.

No, this is not a lifestyle choice, a fashion statement, or a bid for attention.

No sunscreen will not do it. I apply sunscreen under my clothes, in fact.

No, lack of sunlight is not making me depressed. Actually having my symptoms begin to resolve is making me pretty happy.

No, I am not worried about osteoporosis(well not from this anyway).

No, I don't know how long I have to do this, but eventually I will be less sun- sensitive. You, on the other hand, you will probably still be an insensitive boor who asks personal questions of people they hardly know in a less than polite fashion.

Hello again

2008-06-11T19:45:00.002-05:00

Still here. Just trying to muddle through. Lots of stuff needs attending to and I have limited energy.

I'm going to take my next drug holiday in time for an actual vacation in July, so I can have some recreating. Yay!

I am getting better. Or at least I feel better, and people keep telling me I'm better cognitively. My joints are bad, but that means that the bugs living in my cartilage are dying off.

Anyone get the plate of the truck that hit me?

2008-04-22T11:30:00.003-05:00

I'm tired. I just added the third and last antibiotic to my regimen and right on schedule, its thrown me for a loop. I'm wicked tired. too tired to write so I'll just leave you with this very good video. Please ignore the large Haliburton Banner...Its a documetnary on Lyme

Goddess, I love copy and paste.

Dental work done

2008-04-06T08:32:00.003-05:00

For the first time in twenty years, I don't have any ongoing dental work. This is amazing. Who knew that dental fractures (breaking teeth) were a symptom of Lyme disease? I have enough work in my mouth to buy an SUV.

Anyway, I don't need any work done for at least the next six months. Hooray!

Holiday's over

2008-04-05T12:01:00.002-05:00

For the latter half of Feb and the beginning of March I took a "drug holiday". This meant that I quit taking the antibiotics I was on to get an idea of what my new baseline is when I'm not experiencing immunopathology (fancy word for feeling like shit because my immune system is trying to clean up rotting microbial corpses). New baseline is very, very good.

However I started back on my meds on March 20th. Right on time I'm experiencing inflammation and that fluish-someone-turned-the-gravity-up fatigue. My fingers hurt and I want to crawl into a hole and sleep for a week.

Next scheduled drug holiday is June. I'm settling into a six weeks on, two weeks off kind of schedule. We'll see how it goes. What's comforting to my little scientific mind is that this has become predicable and reproduceable.

I'm not nearly as sick as this time last year, so I'm very grateful for that. In my mind, I have shifted from suffering from Lyme Disease to recovering from it. This makes a huge difference.

Sad

2008-03-30T17:43:00.002-05:00

My goat finally kidded on Friday. Two perfect little baby does. They were vigorous and seemed to be nursing well. They did fine with the temperature Friday night and were fine all day yesterday. This morning when I went out to feed and check on everyone, both kids were dead.
Poor mama goat was so sad. She kept licking them, trying to make them get up and nurse.

For a few minutes I sat with the babies on my lap and just keened. Its so unfair.

Yeah, yeah, shit happens and life isn't fair and all that, but I wish the Universe would cut me a break for awhile.

Happy Ostara

2008-03-21T13:35:00.002-05:00

In the pagan calender, its the festival of Ostara today. I plan to make crepes with my fresh chicken eggs and eat chocolate bunnies with my family this weekend.

Happy Holidays all.

Really Slow Food

2008-03-20T07:00:00.003-05:00

I'm sugaring this week. This involves tapping some 20 or so trees, collecting a gallon of sap, give or take, from each tree daily and boiling it down to 1/32 of its original volume. Out of 15 gallons of sap yesterday, I got a little less than a quart of syrup. Liquid gold!

Its peaceful. Just me and the dog watching water boil. For eight hours or so.

We got the meat from our goat last week--it needs to hang for 10 days like lamb does, so when you take it to the slaughter house, you don't actually get it back for at least two weeks. Add the time it takes to raise the kid to market weight and you actually end up with the better part of a year before you can have your chevon. But I just made the BEST dumplings out of the ground meat.

Almost all the chickens have started laying again. Lovely brown eggs with intense yellow yolks.

I love spring.

What the heck is a dramady?

2008-03-06T18:48:00.002-05:00

Alec Baldwin is making a comedy.

About Lyme disease.

I don't know whether to be confused, amused, or appalled.

Okay, perhaps its one of those gallows humor types of things where the humor is used to help deal with the true awfulness of the affliction. Sort of MASH type humor. Or Heathers (Yeah, I'm old)

I don't care much for comedies except the very blackest anyway (this is common among EMT's).

Unfortunately I don't have that much hope or trust. Here's a synopsis I found:

A retro piece taking place in late '70s Long Island, the coming-of-age project focuses on "two families who fall apart when precarious relationships, real estate problems, and Lyme disease converge in the heart of suburbia."

I dunno, it sounds a little tacky to me. I fear that Lyme disease will be treated as either a bad cold or as a hypochondriacal complaint.

Lest you think me too sensitive, replace the phrase Lyme disease with the word Cancer and see how that sentence reads:

A retro piece taking place in late '70s Long Island, the coming-of-age project focuses on "two families who fall apart when precarious relationships, real estate problems, and Cancer converge in the heart of suburbia."

Yeah, that sounds pretty tacky.

Book review

2008-03-06T15:01:00.003-05:00

Just got through reading my husbands advance review copy of James Kunstler's A World Made By Hand

Tip: Do not read this book before grocery shopping. You will find yourself wondering if 500lbs of flour is enough.

The book gives a very realistic picture of what happens when the forces of global warming, pandemic flu and peak oil converge. Not a pretty sight. And its set very close to here, so I know all the towns he's talking about.

I wouldn't call it post apocalyptic, because unlike, say, post nuclear novels, there is no one single event that brings civilization down. There's more of a relentless chipping away at what holds society up and together.

Kunstler's non-fictional The Long Emergency predicts this scenario and his novel just runs with the concept. Whether or not you believe in Peak Oil (although with oil running at $100 a barrel, it looks a lot more likely), you'll find that Kunstler tells a fine story.

Nice trip

2008-03-01T19:06:00.002-05:00

Hubby was out of town this week and the kids had the week off. Took the kids to The Great Escape Lodge this week for an overnight vacation trip. It was fun. We spent some time swimming and some time playing in the arcade.

I'm pleased that I had the stamina to make the trip myself and spend time with my kids. I even had a go on some of the water slides myself. It seems that I continue to improve.

Sap moon

2008-02-27T09:56:00.002-05:00

Sorry to be not writing. I am both profoundly lonely and profoundly uncommunicative. Not a good combination. My friends are all starting to call to ask if I'm okay. Thanks!

Its been almost six months since my mother died. Its been almost two months since Natalie died. This has been a wicked cold winter in more ways than one.

Physically, I'm getting better. I have a little more stamina and my slow measured movements become a little faster. I'm wondering when I can start going on calls again. I'm planning my garden.

My female goat is close to kidding and I took my male goat to be made into meat last week. I need a new cordless drill for sugaring.

Signs of life going on.

Happy Imbolc

2008-02-02T19:26:00.000-05:00

It's the pagan holiday Imbolc today. The day falling exactly between the Solstice and the Equinox. The Native Americans used to refer to the next full moon as the Sap Moon because maple trees can be tapped soon. Chickens start laying and the four footed livestock are getting close to kidding, lambing or calfing. Carnival is this week and the long fast of Lent begins soon.

Happy Early Spring

Feeling frustrated

2008-01-14T10:06:00.000-05:00

I'm at that place where my head wants to push my body to do more than it really should. I'd like to finish drywalling my upstairs, but that means I have to clean, which means I have to move things downstairs and the very idea makes me tired.

*sigh*

Rest in Peace Natalie Jacobs

2008-01-07T22:11:00.000-05:00

Our dear friend Natalie Jacobs died suddenly on January 2 after a brief illness. This is what I know right now: she was ill with a respiratory infection. She went to the emergency room, was given medication and released. She was found by friends the next morning dead in her bed.

She was present at both my childrens births. She helped cut my daughters umbilical cord and was the first person other than myself to hold my son. She was just finishing her education as a midwife.

I spoke with her last two weeks ago.

Natalie, we'll miss you.

Happy New Year

2007-12-30T05:29:00.000-05:00

I'm still feeling uncommunicative. I'm okay most days, but the holidays have been tough. We stayed in Vermont for the first time in a long time, so that made it a little easier.

I'm wondering if I'll be well enough to resume hiking this summer. I'm hopeful. The sun sensitivity is way down and I've been slowly building up my stamina. We (my husband, my son and I) did a short snowshoe to our beaver pond yesterday. It was glorious! I'll just have to take it as it comes. I'm in the phase of this protocol that feels like I'm convalescing

Interesting thought--My husband just blogged a story about leaded gasoline. I find it pertinent because although they phased out the stuff, there's an awful lot of us who were conceived and grew up when we could have been developmentally damaged. There's been a lot of controversy about why Lyme disease should seemingly come out of nowhere in the 1970's as a disease,when the actual spirochete has been around forever. Just a thought.

Made it through Thanksgiving

2007-11-26T19:56:00.000-05:00

I cried from Monday to Saturday. Some friends invited us over for dinner so that was nice. I've only had a couple of complete meltdowns which is good.

Mourning Moon

2007-11-10T10:42:00.000-05:00

I read recently that some Native American tribes referred to the full moon in November as the "Mourning Moon". I'm not sure of the truth of that, but it surely is for me.

Sorry I haven't posted of late. I haven't had the heart for it. What I have been doing is a lot of physical labor. Working on my husband's home office and working with my animals. Two weeks ago we (my family and a neighbor's family) slaughtered 6 roosters for the freezer and there's some more that can go. I made a cold frame for the garden and a wood rack for the basement. It helps. The work is slow because I get tired so quickly, but it feels good to turn on a CD and lose myself in the work. Then I'm so tired I just crash.

The holidays are going to be tough this year. Halloween couldn't even cheer me up and its my favorite holiday. I found myself ranting to My Friend The Nurse the other day about how much I hate this season. I hate the holiday's usually, but this year its especially bad 'cause my mom used to make it her business to cheer me up. She loved the holidays--the music, the lights and everything. She would never turn anyone away from her holiday table so we had some surreal moments with some very unexpected guests (including her ex-husband and his wife). We even had a memorable one where I brought a bunch of my friends to dinner and we called it the "Religous Joke Dinner". As in "Two Jews, a Pagan, and a Taoist go to a Welshwoman's house for dinner..."

My mother could never understand why I was such a grinch, but her experences as a child were just so different to mine. She came from a background of deprivation, so Christmass was a welcome time of abundance. Now we live in a world of abundance. The excesses and the expectations just make me crazy. I'm reminded of the orange she used to put in our stockings. When you can have an orange anytime you want, it just doesn't have the same impact.

Because she grew up in Cardiff in WWII, she never saw the streets lit up at night until she was 9 or 10. She told me of the revelation she felt at that moment and her face took on the delight I see in my own children.

We are not Christian so the holiday doesn't have that religious significance. We have a tree and do the gift thing as a celebration of the Winter Solstice, but that's all. And really that's all. Last year we sang carols with my daughter's singing group, but more out of the love of singing.

I think I'll see if the rest of the family wants to see a movie Christmas Day.

Where'd September go?

2007-10-03T06:24:00.000-05:00

Its was a month yesterday since I spoke with my mother for the last time.

I had a down day yesterday so I went for a drive. We're having an unseasonably warm autumn her in Vermont, so it was in the 70's. I went up to the Long Trail for the first time in a year. The woods were still there and still worked their alchemy. Their silence and aliveness meld with the pain in my heart. Softening it into a much more bearable melancholy. I found myself planning for next summer.

People need to be more careful

2007-09-29T17:51:00.000-05:00

Walking down the street with my 9 year old son today, I witnessed an accident. We were about to cross the street (I'd stopped to check the traffic) when the woman walking in front of us was clipped by a car making a left turn. She fell to the ground and bounced up again in that way that only a twenty something can manage. Swearing and picking up her cell phone and purse.

I and my son hurried across the street to where the woman was now haranguing the driver of the car who'd pulled over. I asked the woman if she was alright and she said she was. She was much more interested in ripping the driver (a male) a new one than checking her own well being. Another woman came from out of a store and offered to call the cops, but the pedestrian refused. Asked again if she was okay, she said "I'm fine if you people would just leave me alone!" I gave my name and number to the girl as a witness and went on with my errand. I never said a word to the driver because, if I'd gotten started, I'd still be there.

The driver had turned the corner as if no cross walk existed and was apparently not looking at all. The young woman he hit had the advantage of being fast enough to jump out of the way. If it had been 10 seconds later, it would have been me and my son under the wheels of that car.

What passes for normal (potentially upsetting)

2007-09-28T11:30:00.000-05:00

I'm feeling better physically. I do believe this Marshall Protocol is working. Everyone keeps telling me how well I look. My light sensitivity is much better, my joints aren't so stiff and today I laid down plastic in our crawl space in preperation for the insulation. My husband and I are planning on drywalling his office in the next couple days.

Mentally I'm okay, considering. I feel...Lonely? Homesick? Something like that. My father is still hanging on, but I haven't lived with him since I was ten years old, so I don't feel him as a parent.

I asked to see my mother's body when we went to the funeral home. I wish now I had taken a memento mori photograph. I keep replaying that moment in my mind for comfort. She hadn't been embalmed, nor in any way prettified. Given the suddeness of her death, I think I was expecting to see some evidence of trauma. The funeral director gave us a little talk about how she was likely to look given that she was unprepared. He visibly relaxed when I said I was an EMT and this was not my first body. Just the first one I was related to.

He opened the double doors to a side room and first I saw her feet covered with a sheet. I almost turned away, then. Two more steps and I was able to see her chest and hips under the sheet--I realized that I wouldn't be able to bear it if she was covered with a sheet and the funeral director had to pull it back like a Law and Order body ID scene.

Another step took me around the corner. Her face was visible. Ashen and slack. Her mouth was slightly open as if in sleep. The funeral director had swaddled her body as though it were a baby, covering the marks of the autopsy. She was a little dehydrated but otherwise she looked as she always did. I'd seen her come out of her gall bladder surgery looking worse. I was glad of the way she was covered--looking so much like the way we come into the world. And somehow it was dignified in a way that a public viewing would not have been. I shared that moment with my husband and the funeral director the way my husband and I shared the birth of our children with our midwife.

The babbling stage

2007-09-20T15:24:00.000-05:00

I find myself talking over and over about my mothers death. To family, friends and strangers. In some ways, I'm having trouble with the concept that someone in apparently good health can just drop dead. Curiously, others around me share the difficulty. I am hearing the assertion "But she was sick a long time, wasn't she?"

Nope.

My mom worked 37 hours the week she died--she died 7 hours into a ten hour shift.

People also ask "Did they do CPR?"

Yup.

Sadly, CPR only works in about 12% of cases.

I talked with Roarinfire this afternoon. I was only able to think this through as I was talking to her (thanks Roarinfire, BTW). I feel like its a revelation to some people I talk to that bodies can just wear out. In my mother's case, it was her heart that wore out before anything else.

I'm grateful that my mothers death was quick and as easy as these things go. The witnesses tell me that she never reported any pain before she lost conciousness. Her last breaths were described by one woman as "sighs of relief". But it is hard on those of us left behind.

My mother's death puts a whole new spin on my own health problems. I desperately want to recover my own health and I continue to rely on the people in my life. Thank you all.