Wednesday, December 24, 2008

Happy Solstice

We put up our tree on Sunday. The sun seems to have taken the hint and is returning on schedule.

Sorry I haven't been around lately. I just completed the first semester of my master's program. Yeehaw!

I hosted a screening of the Lyme documentary Under Our Skin at our local library. It was very good.

In other news, I am almost at the end of this treatment. Yay.

Hopefully, the new year will not bring anything dramatic and I'll be able to get back to my regularly scheduled blogging.

Happy Holidays everyone.

Monday, September 8, 2008

A year and a day

This is the first anniversary of my mother's death. I miss her.

The fairy tale phrase "a year and a day" comes from the Celt's habit of measuring the calender by the moon and then squaring it with the solar calender. 13 moon cycles *28 days long=364 days+ one day for the Sun God=365 Every four years throw in an extra day to account for the extra 1/4 day. Damn fine astronomers.

But since last year was leap year by our common calender, it really is a year and a day.

Whatever way you count it, I miss her.

Thursday, August 7, 2008

Back in Vermont

As summers go, '08 has been pretty bad around here. Between deaths, floods and gas prices, I'm ready to go back to bed until September.

Thursday, July 31, 2008

Bringing out my dad (long, sad, surreal)

So I called the hospice to tell them that my father quit breathing. Funny, I didn't like to say "died" until it was official. I said "My father stopped breathing about 7:10"

The answering service told me they'd send Jerry over. I sat with J for a few minutes. I looked at my father. There was nothing very terrible about his body. We didn't move the bed from the 45 degree angle I had set it at the evening before, when he'd started having trouble breathing. He had been uncomfortable flat on his back, probably from the fluid I had heard moving around in his chest.

Jerry called and said he'd be there in 20 minutes. I got dressed. I wanted to be doing something, so I occupied myself putzing around the kitchen, looking for different phone numbers I would need. I called my brother N who was already on his way to Nashville. J called my brother M, the one who'd left the day before. We asked my brothers if they wanted to see my father, but both of them said they didn't feel they needed to.

After a few minutes I sat down with J. She was still on the couch. She turned to me and said "I'm so sorry." I wasn't sure what to say to that. I looked at my father again...he was gradually transforming from a person to a thing.

Here then, was I, standing at the precipice of the uncanny valley. Dolls that resemble humans too closely become corpses because they seem to be people but are actually things. Corpses are dreadful because they were people, but are things.

I have seen the same thing in reverse at births. The baby makes its entry slowly or quickly. With relative ease or difficulty. Then the baby breathes. Many traditions hold that the soul enters the body with that breath. I always cry at a birth, I can't help it. I used to be embarrassed by this when I worked as a doula, but after a while I found that almost everyone understood. Sometimes I cry just telling the birth stories.

I did not cry at my father's death.

Jerry arrived at the apartment. He sat down next to my father and lowered the head. This startled me, somehow. Making my father look even more dead. "I'm just going to listen to your chest." Jerry said to the body that had been my father. I'm not sure if that was for our (mine & J's) benefit, or just his manner of being with the patient. A long moment passed. Jerry looked at J who still sat on the couch. "Yes, he's gone."

J nodded, seeming to suck up her tears. Perhaps she felt she should be stoic. Jerry looked at me "He seems pretty peaceful.".

"What happens now? Should I call the funeral home?" I asked. Jerry said he'd call the funeral home if we were ready to let them move my dad. I was waaaay ready.

I helped Jerry with some housekeeping chores while we waited for the transport guys. Getting rid of the now-useless medication etc. Jerry said he'd wait around until they'd come in case they needed help.

After about half an hour, two gentlemen in dress shirts and ties appeared at the door. They'd arrived in a white delivery type van and set the cot just inside the door of the building. I was grateful for this. The last thing I wanted to do was discuss my father's death with neighbors.

My father's apartment had a long stairway with a turn at the end. The cot wouldn't fit up those stairs. The two transportation gentlemen stood around for a minute discussing whether to go back to the office for a device better suited to tight spaces. "Couldn't we just wrap him up in a sheet?" I asked "There's four of us and he doesn't weigh more than 150lbs."

The two men looked at each other and shrugged. "Thats fine" said one, he want downstairs to get another sheet. I grabbed a pair of gloves and started wrapping up my dad in his bedclothes "We really don't want these back."

I wrapped the sheets around him all the way up to his neck and one of the men actually covered my fathers now yellowing face. Another moment of weird startlement. Of course, you cover the dead's face.

We all took a fistful of sheet and lifted on 3. He was heavier than I expected. Dead weight.

"He needs to go out the door feet first" said one of the gentlemen. We sort of manhandled him around. We got to the stairs and had to put him down. We picked him up again, but it became very difficult on the narrow stairs. Finally, the larger of the two gentlemen picked him up like a child and carried him, cradled in arms, down.

I helped the gentlemen lay him on the cot and arrange the wrappings again. I belted him onto the cot and zipped up the body bag. The two gentlemen quietly wheeled the cot (feet first) out the door.

Tuesday, July 29, 2008

One week (long, sad)

A week has passed since my father died. I dealt with alot of my unresolved BS before he died, so I'm doing mostly okay.

This is the first major life crisis I've dealt with without my mother and I miss her.

To give details. I was on vacation, visiting friends in MI with my family when my brother called from Nashville on Thurs July 17 that my father had been hospitalized. I had access to my fathers medical records and the reports I had been seeing did not look good, but he was in the hospital and everyone felt he would be okay. On Friday, his doctor inserted a stent into his ureter becasue the growths were now impinging on the structures. His kidney had shut down but there was a slim chance this could make it start up again. I spoke to my brother on Sat. My brother stated to me that it appeared to have worked and they planned to discharge my father on Sunday. In the meantime, I had also spoken to my stepmother, J, who told me they were signing my father up with hospice.

To back up here a moment, my father had had a conversation with his doctor the previous week where his doctor had told him that there really wasn't any more chemo to be done. However, my father seemed very optimistic, even planning for a visit to MI while I and the family were there. I was not so optimistic, even packing clothes in case a funeral was held. But even when he was in the hospital Sat he was talking about coming up for the following Friday.

So when I spoke to my brother on Sat I was not surpried to hear my brother ask me to come down for Monday because J. seemed so overwhelmed.

I made flight reservations for Monday morning and arrived in Nashville by myself at 8:30 in the morning.

When I got there, my brother was upbeat. He said that he felt our father was being just a bit whiny and it was my job to convince him he'd be okay.

I was therefore, a little unprepared for how my father looked when I saw him. He looked colorless. Grey hair, skin and eyes. Except where there was livid bruising on his arms. His feet were huge with retained fluid but his hands and arms were like sticks.

He was very glad to see me although he seemed to be in a lot of pain. He said his pain levels were about a 10 on a 1-10 scale. He was sleeping on his couch, which tho' comfortable, made it difficult to keep his feet elevated and hard to help him up if he needed to use the bathroom. Apparently my father had refused the offer of a hospital bed, wheelchair or commode chair--all of which would make his (and his caregiver's) life easier. I told him, he needed at least a hospital bed. We could put right in front of the TV where he wouldn't feel banished to the back bedroom,

Fortunately, the hospice nurse made his appearance right on time at 9:30. Jerry the hospice nurse was really great. My father was a little combative, one point demanding an IV for his dehydration (come to find out, my father hadn't actually drunk anything since the day before). Jerry patiently explained that they didn't typically do IV's in hospice, but they had other ways of dealing with the nausea so he could take fluid orally.

My father was intially rather angry at this, complaining that hospice was not delivering what they promised, but Jerry was the right mix of cajoling and stern. Soon he'd gotten him fixed up with some nausea meds and my father was feeling tolerable. Jerry then gave him some pain medication and that helped even more. Then he took my brother and I aside and explained to us that "I think this is all going to happen rather fast". I asked him "Weeks, days or hours? Because thats going to determine how long I stay."

Jerry said "Well, unless something turns this around, we can't talk weeks." It seemed to me that my brother was shocked just a bit. I think he was imagining another 6 months. He had to return to MI that day however. He stayed long enough to help us move furniture around for the hospital bed the pharmacy was bringing over. Gave my father a hug and was on his way.

I called my other brother and explained to him what Jerry had said. He said that he'd plan to come down the end of the week, but he'd tell his boss he might have to have the next day (Tues) off.

When I sat with my dad, he seemed just a little more confused. He asked for help to and from the bathroom and then another pain pill which he swallowed with the tiniest sip of water. We sat there together for a bit, my father seeming to fall into a restless sleep.

The pharmacy came by with the bed and set it up. We put sheet and stuff on it then moved my father to it. He complained that it was not as comfortable as the couch and asked us to "Just leave me alone for a minute"

I looked at his medication log and found that my stepmother had written down the short acting painkiller at 6:30 AM. He had received several of those since, but J had told me he'd gotten the long acting one at 6:30! It was now 2:30! I asked her about it and she said she'd written the one she'd given him down, copying it from the label, Aha. This would explain the pain then. I went ahead and gave him the long acting one...After about 20 minutes, he said "Wow, you could get hooked on those"

J went back to work in the office for awhile and I sat with my father. I think that J somehow thought she would have been able to leave him alone. There was no way. He really didn't have the strength to get out of bed himself. I sat and knitted and watched a little TV. My father talked to people I couldn't see. Quite animatedly actually. Sometimes he seemd to be having a really good time. Other times he argued. He picked at his bed covers. About 4:30 in the afternoon, his breathing became very irregular. I called my brother and told him he needed to come down ASAP. He said he'd start driving in the morning.

I sat down beside my dad to get his attention. "Dad?" He looked at me instead of letting his eyes wander all over the room "I'm going to stay as long as you need me. And N's on his way here." He gave me the happiest smile I've ever seen and said "Yeah? That's great"

For awhile, I gave myself over to the guilty pleasure of watching "Bridezilla"

J came back and we discussed sleeping arrangements for the week. That night J decided to sleep on the vacated couch and I would sleep in the guest room. I went out for an hour, came back. My father seemed to drift further away. I went to bed.

I woke up about 6:30 on Tues. Checked on my dad. He was still breathing. I tried to go back to bed. Couldn't. Made coffee. J woke up. We talked in the kitchen for a couple minutes about his will, which she'd just found. We went and sat again with my dad, talking mostly to each other but trying to include him. She said they'd both woken up in the night and he's recognized her and talked to her.

I watched my father's breathing, counting between the chest rising, a couple of times counting up to thirty. Then his chest just stopped rising. I waited. J continued to talk. After a long time I whispered "J, I think he's gone." She jumped up and called his name, hugging him. I took a pulse in his wrist. His arm was cold. I looked for the pulse in his throat. Finally I leant down and listened at his chest. He was really gone


Wednesday, July 23, 2008

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

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.

Wednesday, July 9, 2008

School again

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.

Saturday, July 5, 2008

Fifteen years with the best hubby in the world

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.

Thursday, June 19, 2008

The Sun precaution FAQ

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.

Wednesday, June 11, 2008

Hello again

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.

Wednesday, May 7, 2008

Snow on Beltaine

May first was Beltaine. The beginning of the summer quarter of the year. And it snowed.

Tuesday, April 22, 2008

Anyone get the plate of the truck that hit me?

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.

Sunday, April 20, 2008

Seasons of grief

I'm so sad lately. Almost anything can choke me up. I can turn from it for a moment, but its the background color to my day.

Every time the phone rings, I jump. I'm just expecting bad news all the time.

Sunday, April 6, 2008

Dental work done

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!

Saturday, April 5, 2008

Holiday's over

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.

Sunday, March 30, 2008

Sad

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.

Friday, March 21, 2008

Happy Ostara

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.

Thursday, March 20, 2008

Really Slow Food

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.

Thursday, March 6, 2008

What the heck is a dramady?

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

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.

Saturday, March 1, 2008

Nice trip

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.

Wednesday, February 27, 2008

Sap moon

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.

Saturday, February 2, 2008

Happy Imbolc

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

Monday, January 14, 2008

Feeling frustrated

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*

Monday, January 7, 2008

Rest in Peace Natalie Jacobs

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.