Long Trail with Lyme

Happy Solstice

2008-12-24T17:19:00.002-05:00

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.

A year and a day

2008-09-08T07:04:00.040-05:00

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.

Back in Vermont

2008-08-07T10:45:00.002-05:00

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.

Bringing out my dad (long, sad, surreal)

2008-07-31T10:52:00.007-05:00

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.

One week (long, sad)

2008-07-29T09:30:00.003-05:00

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

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.

Snow on Beltaine

2008-05-07T07:32:00.002-05:00

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

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.

Seasons of grief

2008-04-20T08:26:00.002-05:00

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.

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.

Shock giving way to sadness

2007-09-19T17:57:00.000-05:00

That odd sense of surreality is wearing off, but I don't think that my mother's death has really sunk in yet. I went to the library today (this is what I do when presented with a problem) and picked up books on grief.

I've been wavering between apathy and sadness for the past three days, but I can't say that I've been "grief-stricken". It occurs to me that this is one of those changes in one's life that you never find out about till it happens. Like the secret society of parenting and the weird ways your life changes when you marry, the death of a parent is something that our society does a shitty job of preparing you for and an even shittier job of helping you deal with.

Sigh.

Lessons learned

2007-09-17T18:05:00.006-05:00

I'm back in Vermont now. I'm surprised it took so little time to wind up my mother's affairs. As it was, all her bills were paid and the house and car titles were jointly in her and my brother's name. This means that there is no probate to deal with really. The house will remain as is till we feel up to dealing with it.

For any of you who want to save your loved ones heartache (and money), please make your final arrangement wishes known. I and my brothers were in no fit state to make decisions. Fortunately, my mom had let us know what she wanted. No flowers, no viewing, no visitation. A direct cremation and a Catholic mass. We had a nice lunch afterwards.

If we had not had these clear instructions, it would have been so much harder. I would have gone along with anything suggested and never mind the expense. I had a hard enough time just picking out clothes to wear to the funeral, let alone making what are really major purchases.

Thank you all for your kind words. I'm not going to be myself for a bit.

Moyra still

2007-09-13T08:17:00.000-05:00

Her funeral mass was yesterday and was well attended. We had maybe eighty people who showed up and more who sent word that they couldn't come. Her ashes are to be buried in Vermont.

Donations may be sent to the Arthritis Foundation.

More Details on Moyra

2007-09-10T19:05:00.000-05:00

Moyra's service is to be held on Wednesday, September 12 at St Patrick's Church in Carleton at 10 AM. We will be holding a luncheon afterwards.

My mother's death was very sudden. She always said they'd have to take her out of work feet first. She worked from 10:00PM that evening (she has worked nights for the past nine years) and her co-workers had given her a surprise Birthday party at their midnight dinner break. At about 6:00 AM she began to have trouble breathing. One of her co-workers grabbed Moyra's asthma inhaler from her locker. As soon as she took the inhaler, she lost consciousness and was evidently pulseless. CPR was started and EMS took her to the hospital where she was pronounced dead at 6:59 AM.

I am glad that her last night was a good one. She had called me on the prior Tues and told me how good she had been feeling lately. She had plans for the future and was as vibrant as ever. She was a woman who truly lived her life until she died.

May we all be so lucky.

Moyra Bernadette Davies, 1937-2007

2007-09-08T08:45:00.000-05:00

My mother died suddenly this morning at 6:59 AM. She was at work and had a massive heart attack. EMS was called and CPR was performed but she never regained consciousness. I am going to Michigan to make arrangements.

I'll be checking email if anyone wants to contact me.

Right on schedule

2007-08-14T09:10:00.000-05:00

I've been on Phase 2 of this protocol for two weeks now. And I've got pleurisy again.

Bah.

Other than that, I've also got trigeminal pain and irritability

Double bah.

On the other hand, I've got wireless at home now, so I can blog from bed.

I'm Ba-aa-ack

2007-08-01T13:34:00.000-05:00

Its been awhile, but I'm here again. Returned home from my sojourn to Michigan then Nashville. I had to go down to Nashville to see my father who's suffering from metastatic melanoma. We were "putting his affairs in order" as they say.

I am in the second phase of this protocol. For those who've asked its called the Marshall Protocol. I've added a second antibiotic and am now waiting for the inevitable immunopathology.

I'm feeling a little isolated again. Unfortunately, this protocol makes me really cranky. My husband is exceedingly patient with my moods (thank you, my sweet).

So I am back to tracking my symptoms and hiding out from the sun. Winter just can't get here fast enough.

Perky, perky, perky.

2007-06-18T10:41:00.000-05:00

Okay, Perky for me. Work with me here...

I'm in MI again. I was supposed to start my new antibiotics this week, but Dr had an emergency that's taken him out of the office for a week and I won't get to see him till I get back to Vermont. So, I'm just enjoying my little vacation from the worst of the side effects.

I'm considering spending the afternoon making yogurt since its damned hot here. Just perfect for culturing bacteria. I'm thrilled that I ccan even contemplate such a thing. My kids are off at their respective activities. Yay. Maybe I can even catch up on my blogging this week.

The Wood Are Lovely, Dark, and Deep

2007-06-07T07:12:00.000-05:00

Feeling much better this week. I actually managed to go with my sons class on a short field trip to a local hiking trail. Yay!

I love Vermont. Where we went yesterday is called the "Robert Frost Interpretive Trail". Its an easy little one mile hike with Robert Frost Poetry posted at intervals along the way.

Next week, I move onto phase 2 of this protocol and probably to feeling bad again for a bit, but at least I can see a glimmer of hope

Too good to last

2007-06-01T17:54:00.000-05:00

Back to feeling rotten. Stiff neck, depressed.

Blah

Still feeling (relatively) good

2007-05-31T11:50:00.000-05:00

I'm still feeling pretty well today. For me, right now, that means I was able to take kids to school, put dishes in the dishwasher, take the dog for a short walk, feed my animals and shower without having to nap. My pain level is also pretty good. My chest is not at all painful and my hips are only about a 2 or 3. Its 1:00PM and I still haven't needed to nap, but I will after writing this post.

Hubby is due back from North Africa tomorrow. Hooray! I miss him.

I had a pleasant surprise yesterday. When I went out to feed my goats, I found one of our hens had hatched ten little chicks. I was so excited! I hadn't even realized that one of our hens was nesting. Modern chickens have had the broodiness bred out of them and so you normally can't get them to sit on a nest for the month. I do love baby animals. I spent a nice chunk of the morning just watching them. I have to keep an eye on the dog tho', cause she'll think the chicks are nuggets with feet.

The woods are beautiful and inviting and I keep reading through my backpacker mags. I miss hiking soooo much.

Feeling human again

2007-05-28T05:47:00.000-05:00

So here I am at the feeling better part of this pattern. My chest is still sore, but its no longer agony and my painkillers are taking care of that. I can actually skip the nighttime dose without waking up...Which is good 'cause Vicoden gives me some seriously funky dreams. So rather than 4-5/day, I'm only taking 2-3. And rather than 600mg of ibuprofen every 6 hrs, I only take 200mg. Hooray! My liver and kidneys do a happy dance

If the pattern holds true, I should have about 4-7 days of feeling relatively well (if frustrated by my lack of energy).

Hubby is away in North Africa. I went to the food Co-op before he left and filled up on relatively healthy frozen food. I realized that we were eating out waaay to much. Enough that it is adversely impacting our budget. My brain woke up enough to realize that if I bought the designer frozen food that the local equivalent of Whole Paycheck sells, we'd still save money and I wouldn't have to actually cook. And my children can actually eat something other than junk. It seems to be a good compromise.

Cleaned my kitchen yesterday. Hooray! I even managed to mop my disgusting floor.

Yay pleurisy

2007-05-18T23:18:00.000-05:00

Saw DR today. My lungs sound good, which is a relief. He said that the pain in my chest was most likely pleurisy.

Fortunately, pleurisy is a more or less benign if painful inflammation of the membranes of the lungs. The symptoms are:

Fever
Cough
Chills
Shortness of breath
Weight loss
Poor appetite
Sharp chest pain with breathing. Pain can limit the movement on the side of the chest with pleurisy.
The pain can also be in the back, up into the neck, or down into the abdomen.
Rapid shallow breaths
Inability to take a deep breath
Itching in sites on the back (near the site of the lungs, but no visible rashes)

Except for the fever and weight loss part, I've pretty much got all the other symptoms. Its part of all this random inflamation. I was worried that it might be a pneumonia relapse, so I'm quite relieved.

A subtle pattern begins to emerge

2007-05-17T21:36:00.000-05:00

By logging my symptoms, I've started to notice that I do have a pattern to them. The day after I take the every 48hour medication, I feel more tired and achy. I also have a longer pattern that seems to go about every thirty days or so. I go thru a couple of days (maybe as much as a week) where I feel relatively human, then I get the weeps with joint pain , then I get some new and interesting scary symptom. Usually chest pain of some variety.

I slept badly last night because I was having an asthma attack and I was all out of albuterol. It wasn't serious, so hot water and breathing thru my nose worked for it. I refilled my inhalor rx. Now I have a vague ache in my back up high in the vicinity of my right lung. I'm also breathing hard climbing stairs.. I'll go see my doc tomorrow.

Its reassuring that there's some predictability to these symptoms, but I really could do without the chest pain thing.

Bad day yesterday

2007-05-15T20:46:00.000-05:00

Actually I had a pretty rough weekend since about last Thurs. I'd written a nice long post about it and then my computer crashed.

I had another one of those weepy days and both my kids were home sick. My dog ate my brand new sandals. Then thought it would be fun to chase the baby goat.

I'm having this new thing where if I don't eat, I get all shaky and weird. I've been sleeping badly. Husband is away. I found myself crying at the least provocation.. Ice packs were required for my hand after I spent all that time typing.

I hate this.

MFTN stopped by and hung out for a while which really helped and other friends called just to check on me.

Its good to have friends. In a very real way, they are my lifeline right now. Hugs to all of you!

The tyranny of the positive attitude

2007-05-08T07:05:00.000-05:00

When is complaining a useful piece of communication and when does it become destructive? There's this preacher who's gotten on the positive attitude bandwagon and is telling his congregation to quit their bitching.

I hate complaining personally. However, I'm a cranky bitch when I hurt and no amount of positive attitude changes the fact that I hurt. I find that having any sort of conversation is exhausting and people think I'm snubbing them. I try to tell people how I'm feeling, but it comes out as complaining to my own ears. Fortunately my best friends are introverts and don't have any problems sitting in a room with me and not talking. My husband and daughter have more trouble with it. My son keeps up both sides of the conversation all by himself.

Someone told me to read The Secret. I know I'll have to, if only to defend myself against it.

I'm the most positive pessimist I know. I like hearing the worst first, 'cause after that everything is up. I believe that I have a good life. I have the best family anyone could ever wish for. I am living the way I always wanted to. Just by virtue of being born into the place and time that I was I am already better off than 90% of my species.

BUT

I am not sick because I somehow "called it to me". Its a bacteria that is, in the grand scheme of things, just living its own little microbial life.

My father is not dying because he thought the wrong thoughts. He's 70 years old and spent too many years playing golf in the sunshine without sunscreen.

The vast majority of victims of domestic violence do not collude with their abusers

Positive thinking is not going to fix the war in Iraq. Some even may argue that an overabundance of optimism got us into that mess in the first place by expecting that our presence would be welcome.

Optimists die every day of the week. Of every kind of cause. And sometimes things are hopeless and unfair. And in those situations grief is appropriate. Even, dare I say, healthy. Normal.

Ghandi and Martin Luther King were angry men. They just understood how to use their anger to their advantage. Listen to MLK's speeches sometime. Barely suppressed rage underlines the greatest of those speeches. The belief that one person can make a difference is different from this pernicious positivity espoused by the talk shows. From the blame-the-victim pop psych self help trash.

Karl Marx is spinning in his grave over this repackaged people's opiate. Mindless positivity is a fine example of mind control. But instead of waiting for heaven in the next life, its our own damned fault if we don't have it here. As the bumper sticker says, "If you're not outraged, your not paying attention."

My fingers

2007-05-07T08:08:00.000-05:00

My fingers hurt and its damned hard to type when they do. On the other hand, I'm starting to get back to being able to do things. I'm spending more time on my feet and less time in bed. I can go out and take care of my animals myself which is nice. Just don't ask me to do the dishes--we've got so many chipped dishes from my dropping everything.

Due to the sun sensitivity thing, I need to wear gloves outside and this morning they actually hurt my hands. I hate it when my clothes hurt. I've had trouble lately finding clothes that are acceptable to wear because of this. Complicated by the fact that I've gained weight, I can't find clothes that are both becoming and don't hurt. Let me be clear here: I don't mean these clothes are uncomfortable, I mean they hurt. Imagine a constant sunburn if you will. Some of my pants feel like they're made of metal rather than cotton and nylon.

Its hard to be clear with other people about symptoms when they sound so weird to one's own ears. I had a hard time sleeping last night because of chest pain, okay I can say that, but how do I explain that the sheets were too heavy for my feet?

Anyway, I was going to talk about something completely different, but typing hurts too much this AM so I'm done now.

Doctor visit

2007-05-01T07:05:00.000-05:00

Hubby came with me to see DR yesterday. Appointment went pretty well. I'm on the highest dose of the current antibiotic in this protocol and it looks like I'll go to the next phase in June (which would actually be about two months early).

Got into a conversation about wether I was able to ask for help. I said "yes" while hubby sat beside me shaking his head "no". Sigh. Okay, how about "I'm a lot better than I used to be". There was also some discussion about how much I minimize--DR asked me how I was doing and I said "better" and Hubby started talking about how dreadfully I'm doing.

Well, I guess when I said "better", I meant "I can get out of bed most days for 5 or 6 hours at a time before I have to nap" and "I'm only taking 3 Vicoden a day, down from 4". I did give DR my symptom charts that I've been trying to keep which give a better idea of how I'm doing.

DR said I ought to give my friends around here a call to help me out. Hubby made the comment that it was hard for me to do because I am both shy and macho. I think that DR knew the macho part but was, perhaps, surprised by the shy part. I just hate to bother people.

I'm really missing my hiking. Perhaps I can go hiking at night now that the weather's better. I feel a deep homesickness for the woods.

Updates on everything

2007-04-30T06:53:00.000-05:00

Back in Vermont now. Got back last Monday, but I haven't been together enough to post anything.

My father's cancer is back. They're talking about enrolling him in various clinical trials, but after doing the research, I'm not hopeful. they're chemo drugs that have anything from a 6-15% response rate. If that were the grade one's kid got on a history test, one would be appalled. Given that I, myself, am participating in a phase 2 clinical trial, I would want a much better track record. The trial I'm participating in has a 70% response rate, so its at least a passing grade. If I'm going to spend this amount of time feeling like shit, I want some benefit from it.

If I were in my dad's shoes, I think I would be going straight to the palliative care and spend my time doing whatever made me feel better. Sometimes feeling better is enough.

My friend's father (the one who was just admitted to hospice) died. My friend has an uncomfortable relationship with her family and we've been each other's mutual support thru the parent-with-cancer thing. Lots of hugs to you, my friend. Sadly, lots of stupid family stuff has come out in the wake of his death with her family behaving badly toward her partner (and my sister-of-choice). More hugs in that direction.

I've been doing some heavy research into my own drug trials. It appears that what happened to me back in Feb was what is known as a cytokine storm. Fortunately for me, part of this protocol is an Agiotensin II Receptor Blocker (ARB) which moderates the positive feedback loop. It explains why the pneumonia crept up on me so damned fast. Curiously, the very fact that I have been so damned sick also helped, because the cytokine storm is potentially fatal in a vigorous immune system.

And finally I got my hair cut. I'll put a pic online once hubby brings home the camera. I went to a hair dressers with my hat and glasses and explained how they are a permanent fashion accessory. I told her I was tired of the aging hippy look, and I didn't want to go too short because I didn't want people speaking to me in hushed voices (well any more than they already are) asking "so is it cancer?". She did a really good job I must say. Its cute and fluffy under my hats and shakes out when I take them off.

Life and death

2007-04-16T12:50:00.000-05:00

So I just came up for air after a 3 episode Six Foot Under mini marathon. I love that show. The soap opera set against the backdrop of the undertaker. Plus I'm reassured that other's share my interests since it had - what?- a six year run.

My dad is getting scanned to look for cancer this week and I should call him. A friend of mine's dad was just enrolled in hospice. Another friend's father-in-law died recently. I feel positively banal when I set my own stuff against that.

And yet...Although Lyme disease is not officially a fatal disease it does seem to shorten the life span. And it sure as hell does a number on quality of life. Rather than spending this shiny monday taking my kids out somewhere fun (they're on Spring Break), I spent it laying down in bed watching the aformentioned television show, 'cause I was just too damned tired to do anything else.

I just dragged my butt out of be a minute ago. My son is playing with his army guys on the table beside me right now and that's nice. This whole sunsensitivity thing completely blows because I can't even do the "Let's go to the park and I'll sit on the bench" thing

Hair again

2007-04-13T12:55:00.000-05:00

Haven't done anything with my hair yet. I'm probably going to cut it off. My sister-in-law is a hair stylist, so I'm going to ask her for advice--perhaps allow my hair to resume its natural color for the first time in 20 or so years (for me natural is radical).

In other news--there's not much. I still feel tired and cruddy, perhaps slightly less cruddy than before. The chest pains came and go, but not so sharp as they were that one day. Perhaps because I know that they're nothing. Amazing how one's perception of pain changes when one realizes that its merely a false alarm.

I must say however, that its a good thing that I'm not particularly self concious about my looks. I get some interesting stares as I walk around swathed in cloth.

Headed out

2007-04-06T21:57:00.000-05:00

I'm heading out to Michigan this week to stay with some friends and family. It will be a nice break for both myself and the kids.

Husband and I are playing with ideas about how to keep the day to day running of the house going while I feel cruddy. The hiring of a housekeeper will probably be part of this and it looks like my mother will come out for a while. I sent an email to my kid's school just to give them a heads up about why things might be a little chaotic lately. I'd hate to have them think I suddenly got myself a drinking problem or something.

I had an appointment with DR the other day. He's very concerned about me it seems. We talked for a long time about how this protocol is going. I told him that anyone who's considering doing this needs to be the right combination of desperate and dedicated. I also made the observation that perhaps I was far sicker than anyone (including myself) had suspected. I think I have spent so long coping with this that I have raised coping to an art.

Hair

2007-04-05T12:40:00.000-05:00

Its bad when taking a shower seems like a lot of effort.

I'm sitting hear feeling like I have to save my energy. In an hour I have to pick up my daughter and drive her to her singing group. My hair is tangled and getting on my nerves, but the idea of actually doing something about it seems like it would just be a huge hassle.

Years ago it was very long and I cut it quite short because taking care of it while I was sick was too much. I'm considering it again. I'm not particularly vain and I hate getting my hair cut in general. I color it when the grey starts to show but otherwise I pin it back to keep it out of my way, but there's always something symbolic about big changes in hair.

Have to think on this and meanwhile I better do something about my hair before I go out in public.

Sugar season/mud season

2007-03-28T20:46:00.000-05:00

Made my first pint of maple syrup for the year. My neighbor down the street tapped my trees when he found out I wasn't feeling well and hubby went and collected the sap. There's something deeply satisfying to me about producing my own food. My chickens have started laying again too. I imagine what it would be like if this were the first fresh food in four or five months.

We are also ankle deep in mud. When MFN called the ambulance for me she took me down to the nearest major street in her car because we were afraid that the ambulance would get stuck in said mud.

This whole experience reminds me of springtime in Vermont. The occaisional beautiful, glorious sunny day inserted into solid weeks of rain.

Scary night

2007-03-27T11:43:00.000-05:00

I went to the ER last night with chest pain. I'm okay. It turned out to be something they call costochondritis which mean that the cartilage between my ribs was inflamed. It was quite scary though due to the fact that it was on my left side and radiating into my jaw and shoulder.

This is to be expected given that the treatment I'm on is going to make inflammations worse. I actually called DR at home which is something I hate to do. I figure the poor guy's entitled to a life outside of work, but this was one point where I really didn't feel good about taking my chances with the physician-on-call with the answering service. He told me to go to the ER. I called my neighbor to help me with my kids and she had the presence of mind to call 911 for me. The idea being that they could ascertain pretty quickly whether or not I was having a heart attack.

The ER was one of the more surreal experiences I've had. Its like the diagnosis of Lyme disease kinda threw them. Fortunately, I was also able to tell them about the pneumonia and that seemed to reassure them, cause this kind of thing is apparently not uncommon after that.

If anyone reading this is of the spiritual bent, I sure could use some healing vibes right about now.

Meanwhile, across the Atlantic

2007-03-25T10:24:00.000-05:00

Here's an interesting blog From the UK with a post about Lyme disease complete with a video. Check it out.

Tend and Befriend

2007-03-24T21:50:00.000-05:00

I had several friends call me this week to check up on me Somehow, I found that I was much more interested in reaching out to talk about their difficulties than my own. They all said things along the lines of "Oh, but your having such a hard time, you don't want to hear about me." But I did. I found that the mutual whining really helped.

I told one friend, "I'm all out of faith in me and this treatment, so I'll borrow yours. In return you can borrow my faith in the fact that you're terrific at what you do and you'll be okay."

I got off the phone and, far from feeling more burdened, I felt lighter, calmer. One of the problems with chronic illness is the tendency to become isolated. If there's one thing I've learned in my protracted dealings with this leviathan is that I can't deal with it alone.

I've suggested to other people suffering from chronic diseases that they need to get a support network of some kind. Even one online counts. There's a curious resistance to it. Perhaps it comes from our culture's value on individualism or something, but I always hear "I don't want to sit around and hear other people whine" Yeah, but then you'll get a free pass to whine! And then, because its reciprocal, it stops being whining and turns into stress relief.

A caveat to this, is the person who whines but doesn't give you the chance to whine back. This is at best rude and at worst destructive.

Nobody wants to talk about this

2007-03-23T20:43:00.000-05:00

The death of Bill Chinnock got me thinking about all the times I've talked with other chronically ill folks about suicide. Its an open secret among folks with chronic pain conditions and we hardly ever talk about to other people. I know several chronically ill people who horde a stash of pills or who have a plan for the day when it gets to be too much

Let me be clear, when the chronically ill talk about suicide, they're generally not suffering from depression. They don't say anything to their doctors because they don't need a psychiatric referral. What they need is relief from intolerable symptoms. Some of those symptoms are physical and some are mental and many are psychosocial.

Imagine breaking a leg and not being offered any pain killer. Then being given a crutch and told "You'll get used to the discomfort" without the benefit of a cast. And maybe it'll heal and maybe it won't. You might even be told that your limp is merely to get attention. As your leg heals deformed, you feel that you are an increasing burden on those around you. After a while, checking out of this life might start to look attractive.

The Vermont Legislature just debated a death with dignity act. It would only apply to the terminally ill. I believe that assisted suicide or whatever you want to call it asks the wrong question. Rather than asking whether its okay to help a person in intolerable pain kill themselves, we need to ask why we're allowing people to suffer in intolerable pain.

Happy Spring

2007-03-21T12:05:00.000-05:00

I'm feeling somewhat better today. My joints ache, but the terrible mental stuff seems to have calmed down. I'm not quite "full of the joys of spring" but I'm much better. I'm even hopeful.

Thanks to everyone for their kind words

Dream

2007-03-21T06:36:00.000-05:00

I had a dream the other night that I was being dragged away by two or three things I referred to as "centipedes". They were black and white and rather cartoony. Two of them had ahold of a scarf around my neck and I escaped by using a pair of scissors to cut off the scarf.

Man, these are some good drugs I'm on.

In other news, long time Lyme sufferer and activist Bill Chinnock killed himself. Sad news. Lyme is not generally considered a fatal disease, but here is one death directly attributable.

Grief

2007-03-20T06:27:00.000-05:00

I spent most of yesterday crying. One of those weird crying jags where even as you go about your business, the tears continue to fall. I called DR's office and talked to his nurse and then DR called me back. Mostly it was just a need for reassurance on my part. This was not merely my normal depression which has dogged me most of my life. That's another old friend with a shape and form I recognize. This was grief. Like someone had shot my dog or something. In a sobbing conversation with a friend (and fellow Lyme sufferer) that I said "I feel like all the ground I've gained in fifteen years, I've lost in two months"

We talked about how public I want to be about how badly I'm doing. How I'm contemplating asking DR for a handicapped parking pass. How I've been using my ski pole like a cane. How being disabled sucks

Then my husband comes home and we suddenly remember we were supposed to meet with my son's teacher for a conference at lunchtime today. Actually he remembers--I never would have. He called the school and set up another appointment while I sat on the bed and sobbed. Feeling useless and a bad mom. I spent the rest of the day napping and consuming my favorite forms of brain candy--horror movies and fantasy books.

DR says I'm experiencing a Jarisch Herxheimer reaction, also known more recently as immunopathology. In a nutshell, its what happens when the bugs start dying in amounts too large for your immune system to clean up quickly. Their rotting microbial corpses lay around waiting for the sanitation workers to come pick them up. Your body has to gear up and create these cells. In order that you don't spend your energy doing anything else, you feel shitty and want nothing else other to go to bed. Modern medicine has many chemicals in its pharmacopia that could be used to make me feel better--steroids for instance. But, they'd also stop my immune system from killing the bugs.

So it goes.

Musings on dependence

2007-03-17T20:40:00.000-05:00

I really hate going out at the moment. Its not so much that I'm afraid to go out as it is I lack the energy that's needed to deal with people. The dreaded "How are you?" that people proffer as a greeting. Someone asked me that the other day. "Tired and miserable" jumped out of my mouth before my sluggish internal censor realized what was happening. What does one say to that? The other person looked understandably uncomfortable. On the other hand, does it hurt that an acquaintance knows how I'm really doing?

I'd like to just stay home, but I can't.

I'm having a very hard time making entries on this blog...I type and erase and type and erase. I would assume if one is reading this, they really are interested in how I am, but how much is TMI? I even have a hard time telling my husband how lousy I'm feeling. Partly, I don't want to turn into someone who whines about every little symptom. I know some of those people and its not attractive.

Last year, when I went dog sledding, we were told "If you give help, you're contributing. If you ask for help, you're also contributing". This was one of the rules for being a working community with healthy interdependence between members. Giving and receiving help was presented in a paradigm of equality with the helped on an equal footing with the helper. A very different mode of thinking than the one I was raised in. I need to keep remembering this

Hey, you changed it.

2007-03-14T07:08:00.000-05:00

So now my disease has yet again reset my priorities. It does that. I still intend to hike the Long Trail, but it may be that it will be the summer after this. I need to focus on getting through the day, it seems.

So intrepid reader, I intend to continue to write about living with this. I thought about shutting my blog down, but it feels therepuetic, I'll try to keep the TMI to a bare minimum.

Spiritual practice

2007-03-12T07:33:00.000-05:00

I should change the subtitle of this blog to "A record of trying to get through the day with Lyme".

After my last post, I had a wonderful outpouring of support both on and off line so thanks all! I made the comment yesterday to a friend that I had gotten so good at coping with my symptoms that I had forgotten how sick I was. Truly, I haven't felt this bad since I started the thyroid medication. Last summer when I was on antibiotics, I didn't feel this dreadful.

The last time I felt this bad was when I was 22. I did a lot of introspection that year--I had the space to do it in too. I spent most of my days on my mom's couch watching "Oprah". Eventually, I got well enough to work part time and I worked at a New Age bookstore. That was great! I was surrounded by all the self help and alternative healing books that I could read. Plus the owner of the store was some variety of healer. I learned a lot that year about mental states and health. At the end of that two year flare up, I was newly engaged to my husband and putting my feet on the first steps of the path that brought me to this place in my life. I learned an incredible amount in that time and I am grateful. I consider what I was doing and where I was before I got sick and I shudder. Without that illness, I would have had very little reason to change my behavior. And my behavior was not happy making.

So, I'm back to trying to be philosophical.

Flare up

2007-03-06T11:26:00.000-05:00

I always feel vaguely ashamed of being unable to do things. Rigth now, my life's on hold and it appears that it will be for a bit. I don't really want to talk about it(so instead I'm putting it on my blog where the whole damn world can see!).

Instead of being able to just take my dog and go for a four mile walk, I'm finding I need to use my ski pole for balance when I go out and feed my animals. And then I need to sit down and catch my breath. My kids haul in the wood. I keep telling hubby he should send me off to a home for the useless. People are worried about me and that makes me uncomfortable. So much of my identity is bound up with being competent and together.

More than the pnuemonia, the treatment I'm currently on is causing a flare-up in my sympotms. My breathing feels normal at last, but I'm tired and achy and generally feeling cruddy. This is apparently to be expected as the death of many Lyme spirochtes causes a build up of toxins and results in an inflammatory reaction.

So I'm just taking it one step at a time, as it were.

Bah

Sad

2007-03-05T07:25:00.000-05:00

I'm depressed and rather lonely.

Not because I'm alone mind you. I have terrific social support in the form of friends and family, but I've got that old feeling of having my body seemingly turn against me. Its very isolating. We all struggle with the idea that ours is a culture built around health and youth. We all struggle with the fact that we're all going to grow old and decrepit (if we're lucky) in that culture. Sadly I feel like I've been dealing with it all my adult life and that makes me feel isolated. I have these moments in my life where I become aware of what I've missed. Most days I try to be philosophical about it. Experience deepens the soul etc etc. This morning I just feel depressed.

On hold

2007-03-02T07:19:00.000-05:00

I hate the way this disease interferes with my life.

It appears that the new drug protocol I'm on is working in the way its supposed to, but this means I'm likely to get quite ill in the upcoming months. I'm planning to get all the hiking in I can, but I may be limited to day hikes this summer. This is disappointing. We'll see anyway. At the very least, I won't be attempting any solo hikes till I feel much better.

My husband pointed out the metaphor of my blog title the other day. Unconcious on my part actually. I've already walked a "long trail" with this disease.

Pneumonia update

2007-03-01T13:21:00.000-05:00

I went to see my doc. My lungs are sounding clear which is great news. Interestingly, the pneumonia was probably partly brought on by this new drug protocol. My immune system has been deranged for so long that the new medication caused an inflammatory overreaction. Unfortunately in my lungs.

So I continue to rest and heal

Longing for a walk

2007-02-28T10:51:00.000-05:00

Drove into town with my husband again today. The sky is a bright blue and the temperature hovers at around 13 degrees. Just right for a snowshoe or a skiing expedition.

Sigh.

I just want to take a walk. My poor dog has been faithfully laying on my bed with me, but I know she'd rather go for a walk too. I am tired of knitting and thinking and I am tired of being tired.

Story of my life.

I'm starting to arrive at my "regular flare-up" level of sickness. I have these levels of illness worked out in my head ranging from how I was this last Jan which is "not sick at all" to "can't get out of bed" which is how I was last week. I have to keep reminding myself, that unlike the Lyme, which doesn't much seem to care what I do, that this pneumonia can relapse and it will be bad if it does.

I had this experience a couple of years ago actually. After I went on the thyroid medication which helped so much, I really had to re-learn about acute illness. I had plain old influenza and I went on an accident call on a cold winter night. The next day I discovered what happens if you have the flu and you don't rest. You get worse. Big revelation there.

This is actually one of the biggest problems with so many chronic illnesses. You want to find a pattern. You want to find what makes you worse and what makes you better. Its a way of getting control. Trouble is, it's often pretty random. Frustrating to both oneself and the peopple close to one.

Still here

2007-02-27T12:45:00.000-05:00

I continue to recover. I'm tired and weak and a trip down the hall seems to take eternity, but I can breathe and stuff, so all is good.

Today I have made my first journey out of the house that doesn't include a dr's visit. I'm down in Hubby's office snarfing up broadband.

I can't help compare and contrast the Lyme and the pneumonia. Pneumonia is a scary thing. According to the American Lung Association, it was the number one killer in America before 1939. Even today, its the number one infectious killer, although, now most people it kills are elderly.

I want to write about medical hubris and societal attitudes towards sickness and health. I want to write aobut how we got to this place in the early 21st century where we can sure so much and yet people keep suffering from chronic debilitating stuff, but I'm in need of another nap.

Maybe tomorrow.

I may yet live

2007-02-23T21:27:00.000-05:00

Visited the dr today to check up on my chest. Unfortunately, my doc has been out of town this week so I saw his covering doc. I must say, bacterial pheumonia is one of those things our medical care system is just fantastic at treating (at least for those of us with insurance, but that's a whole other blog). I take my antibiotics, my fever goes away, my phlegm goes from yellow and copious to grey and scant. My chest was still very tight and worrisome though, so out of his modern medicine bag of tricks he pulls an albuterol inhaler. Voila! I can breathe. Some cough medicine so I can continue to rest and heal. An admonition not to overdo it and a directive to see my own doc next week and I'm on my way.

So very, very satsfying. So very very different from the Lyme.

To quote a favorite character from a favorite TV show "No impossible battles with ancient enemies against overwhelming odds. They were the bad guys. We were the good guys. And they made a very satisfying 'thump' when they hit the ground!"

Valentine's Day Blizzard and pneumonia

2007-02-21T17:19:00.000-05:00

How did it get to be Wednesday? Last time I checked it was Thursday.

Little saga to tell:

We had a freind here who was supposed to catch a flight back to JFK on the 15th. Well naturally, we were snowed in with the Valentines Day Blizzard (worst since 1883). He cancelled his flight in favor of one on the 16th, but we found out that the plow guy couldn't get to us until late on the 16th or possibly the 17th. No problem, we figured. A neighbor and good freind volunteered to take our guest down to town where he could catch a shuttle to Burlington. We only had to get our guest down to the plowed part of the road. This turned out to be a quarter mile away. My husband and I donned our snow shoes in order to tromp a path to the road since 36 inches of powder is no fun to walk through. We had a wind chill advisory that night, but this only means you need to cover up well to prevent frost bite. I put on my stuff and made sure my face and my husband's face were covered, grabbed my poles and off we went.

Have you ever snowshoed at night on new powder? If you're at all into winter, its one of the most sublime pleasures to be had.

Remember that cold I spoke about in my last post? I was busy being a festival of secretions, but its just a cold right? As we walked, I noticed a little tightness in my chest, and I seemed more easily winded than usual, but I brushed it off as not having been walking as much as usual. It was nice to have a few moments alone with husband and we tromped a path and were back to the house inside of forty minutes.

When we got back, my chest felt tight and I was tired so I went to bed. Woke up, sent hubby and guest out the door took more cold medicine and went back to bed.

After that it's a blur...At some point I woke up with a terrible fever and coughing copious yellow gunk. Hot bath, more cold medicine, back to bed. Hubby offered to take kids into town on our now plowed driveway. Sure fine whatever. I slept. Hubby came home and said something aoubt perhaps this was reaction to new drugs. I said something noncomittal and went back to sleep.

Woke with serious aching limbs and fever. Endlesss round of hot baths and cold medicine. Lying in one of those weird fever dreams that feel so much like having imbibed some less-than-quality mind altering chemicals (some really bad tequila I drank once comes to mind)

On Sat it occurred to me that this wasn't normal.

Called my friend the nurse and asked her when one should worry that a cold has turned to bronchitis.

This is depressing.

One of the problems with having a chronic illness is the length of time it takes for it to sink in that one is acutely ill.

On Sun I called the doc on-call over the weekend and got myself some antibiotics prescribed. Unfortunately, by this time, my bronchitis had become pnuemonia. A relatively long recovery for my poor lungs is expected.

Here I am again

2007-02-13T09:30:00.000-05:00

Still tired, only now I have a roaring cold. I've started this new medication. I feel like Nicole Kidman in The Others. Or, more precisely, her children since they're the ones with the extreme sun sensitivity. I am sitting in my darkened bedroom, since the sun could actually burn me through the glass. I have ordered some fancy expensive sunglasses. And since its cold, I can wear a balaclava outdoors for awhile. For spring I have ordered a hat and I will order some sun gloves (yes they make them) from Coolibar. They make special sun protective clothing. Did you know that an average summer shirt is only about 10 SPF? So I also ordered a couple of shirts to wear over my T shirts. I'm also ordering what's known as a "rash shirt" and tights for swimming. These are basically a long sleeved, long legged swim suit--think wet suit.

This regimen is experimental, although the drugs are not. Its similar to a regimen they use to treat arthritis. The biggest side effect is the aforementioned sun sensitivity, but as with all Lyme treatments, it's likely that I will feel worse before I feel better.

More on Chronic Fatigue

2007-02-06T19:06:00.000-05:00

Chronic fatigue requires one to be short and to the point in one's communications because long conversations wear one out.

Chronic Fatigue

2007-02-03T21:49:00.000-05:00

I'd like to write a post about how my chronic fatigue is flaring up right now, but I'm too tired tonight.

Cold snap

2007-01-31T21:42:00.000-05:00

Its been pretty cold this week. This morning we had that beautiful clear sunshine that I treasure. When its this cold, the snow is pretty dry and it drifts off the trees and gets thrown into the air by the wind. I'm suddenly reminded that I'm living in Robert Frost country. For a very short time, when the sun is at the exact right angle in the morning, it all turns to gold.

Unfortunately I haven't been feeling as well as I was last month. I've been stiff and cranky in the mornings (Okay, not just mornings) and my walks have begun to take more effort. I did go x-country skiing with my son's class on Monday, but I was more tired than usual. I also had trouble with my right knee, it was so stiff as to make skiing difficult. It really wouldn't bend--to the point where one of the instructors noticed and asked if I had a bad knee.

*sigh*

I worry about being able to do my hike when I'm feeling less than terrific, but I was able to do some hiking last summer even though I felt positively cruddy. I just went slowly and packed light. I just keep telling myself that I will do it in my own time and my own way. If necessary, I can do it as a series of day hikes one weekend at a time.

The whole Long Trail hike is a metaphore for my recovery from Lyme. I'm not going to put my whole life on hold while waiting for a miracle that may never come. I'll just keep putting one foot in front of the other 'till I get where I'm going.

Movie Reveiw

2007-01-30T18:04:00.000-05:00

I don't watch that many movies, but I just saw a great one. The Descent. Its about five women who go spelunking. Its got everything I like: scary stuff, women doing cool adventure travel, survival and trauma.

Its got a whole supernatural monster thing going, but even without that it's pretty scary. The mistakes the women make are not egregious. In fact, like any survival situation, it seems the mistakes are small. The real character flaw is hubris on the part of the leader. And the misplaced trust the rest of the party has in her.

Its great to see a horror film where the women act like grown-ups.

I reccomend getting the original cut, 'cause the cut for American audiences leaves the viewer hanging in a weird spot

Two steps forward, one step back

2007-01-24T10:40:00.000-05:00

Looks like the reason I was feeling so darn good for the last few weeks is at least partly due to the clindamycin I was on. When I came off of it, over about a week I started to feel like someone had turned up the gravity. This is not unusual, but I'm not thrilled.

On the other hand DR would like to try me on yet another drug that he believes will be very helpful. It has a couple of draw backs:
1. It makes one very sun sensitive.
2. It makes your symptoms worse before they get better

Now, when they say sun sensitive, they don't mean just slap on some extra sunscreen. They mean two minutes of exposure could be enough to give you a pretty nasty sunburn. I was on a similar drug last summer and my hand got burned through the windshield of my car while driving. Given that I'm fair skinned, grey eyed and I have freckles, this is a problem already. The literature for this treatment talks about it being a good idea to only go outside after dark! So, now I'm studying sun protection clothing. Any links or research from anyone out there would be greatly appreciated.

I have been asked if this will make me postpone my hiking. I really don't want it to. I'm not going to be foolish about it, but I refuse to put it off if humanly possible. If necessary, I will only hike in the Early AM (even before the sun comes up) so that I can be safely ensconced in some wooded glade before the rays get fierce.

Backpacking is still cheaper than therapy.

Happy Birthday to Me

2007-01-17T09:43:00.000-05:00

I was 38 yesterday. My goal is to hike the entire trail by my 40th birthday, so the clocks started ticking.

Still haven't picked out my first weekend hike, but I think for the first and last section I'd like to do it solo. Kind of metaphorical I guess. I'm thinking aound the middle of June.

Continuing to train. I went snowshoing the other night. It was wicked dark. Overcast and foggy. I hadn't actually planned to walk home after dark, but I had snowshoed down to see my friend (she lives about a mile away). This was Mon. the day New England got hit by the ice storm. Not so bad for us, but the roads were pretty sloppy and slick. I had my kids meet me at my friends house and had my husband pick up the kids on his way home from work.

I hung out with my friend for a while longer 'cause she's just had surgery and in the tradition of strong women everywhere, she just was in too much danger of overdoing it. Eventually, I extracted a promise that she would stay on the couch and watch TV. I hadn't brought a headlamp and she couldn't find any of hers, but I figured there would be enough snow to give me some visibility. Plus, I had the dog with me and she knows the way home.

The fog was pretty bad, however I got home with no major mishaps. I do have an urge to invite many of the fantasy author's of the books my daughter reads to come out and visit us. They write about characters making their way through strange woods on dark, foggy moonless nights. Yeah, right. I want to set them loose on a dark, foggy, moonless night here and say "This is what dark looks like"

More progress

2007-01-12T22:05:00.000-05:00

I walked four miles again today. Yay me!

I have to bring up another symptom. Something called exercise intolerance. This is when one can exercise, but feels completely wiped out for the rest of the day and most of the next. When I flare up, this is a real problem. It makes it way easy to get into a cycle of deconditioning. One feels pretty cruddy to start with, then any activity just destroys one. Your motivation for keeping in any kind of shape just isn't there.

Its very frustrating

Last summer I handled it by going for easy walks for 20 minutes or so when I could. As I said in an earlier post, I had a pretty rough spring and summer.

I'm really please with the fact that four miles is becoming a regular thing (so are the animals) and that it really is getting easier. Right now I feel tired and my knees, hips and hands are quite sore, but I don't have that run-over-by-a-truck tiredness that comes with the exercise intolerance.

Again, Yay me!

Signs of progress

2007-01-12T09:27:00.000-05:00

I went to pick up hay for the goats yesterday. I get it from a farmer down in the valley. Its this great honor system thing. You go to his hay barn, grab your bales and then drop the money (2.50 a bale) into the jar on his porch marked "hay money". He's a real farmer. Cows, chickens, sheep, endless fields. Unlike me who just runs a personal petting zoo.

But I digress

So I was putting my two hay bales into the back of my SUV, and I thought "Huh, funny, these are a lot lighter than they should be." They fit into the back the way they usually do though (I can fit four into the back without putting down the seats). Went on with my day.

Got home after dark, so I left them in the car overnight.

This morning I took them out, loading them up into the the sled I use to move them to the goat pen. I thought again "These are really light, they must be smaller bales than usual" I took a good long look. They were baled by machine in the usual way with the usual amount of twine. They looked the same size. Suddenly, the penny dropped. I've been training. The bales are the same size, I'm just stronger. Whee!

I'm starting to believe in two things.

1. Maybe this Lyme treament is working
2.My goal of hiking the Long Trail is more than an ego thing. If I continue to train for hiking, my physical condition will continue to improve. Resulting in a happier, healthier, more capable wife for my husband, mom for my kids, EMT for my community and whatever else I need to be.

I thinks its called enlightened self interest.

A quick note on risk

2007-01-11T09:23:00.000-05:00

As I pointed out in an earlier post, hiking the Long Trail solo is much less risky than, say, driving my car. Here's a fun little article about risk assessment in Time Magazine.

Imagine that

2007-01-11T09:06:00.000-05:00

Cold in January in Vermont!

We finally have some almost normal weather! I got up this morning and had to light both woodstoves. I don't have time for an extended walk today, so I'm off to bring in wood and then to town to pretend like I actually live in the 21st century (I figure that except for the internet, I spend more time in the 19th).

Overdoing it

2007-01-10T19:49:00.000-05:00

Walked 5.6 miles with the dog today. I am very tired.

This morning it was one of the few really cold days we've had this winter, so I decided to pack up a little daypack and spend a couple of hours out in it. The weather was mostly overcast with some in and out sunshine. We walked along the road that runs by a creek. It was very pretty with just an inch or two of snow. The tree were all out lined with white. It was very crisp and quiet and I really didn't want to turn around. We went two miles before I thought it would be a good idea to turn back as my hip was beginning to bother me. By the time I got home, it was pretty sore.

A little while later, it was time to head down to walk my kids home from the bus stop. Their bus stop is exactly .8 mile from out doorstep. I often get some grief from them about what a loooong walk it is, but it gives them and myself time to talk when I go meet them. I almost always try to meet them because its a way of building a mile and a half walk into my day. Perhaps it would have been prudent to skip it today--I think the extra mile did me in.

The dog is also pretty tired. She has spent the entire evening curled up either on the sofa or the bed. I think that it was not so much the distance that wiped us out as the temperature. There's a couple of hills that generally never fail to have me pulling off at least one layer of clothing and today those hills were vital to keeping me warm. I didn't feel cold while I was out, but I was really pleased I had loaded up on snacks for us both.

So to bed. I will say that there is a deep satisfaction to be had in going to bed really physically tired.

Brain Fog

2007-01-09T20:48:00.000-05:00

One of the real bitches of Lyme disease is not the physical problems, but the mental ones. There's a phenomenon known as "brain fog" that is common to several chronic diseases, including fibromyalgia, chronic fatigue, arthritis, and I've heard recently, chemotherapy.

To explain: imagine the worst flu you ever had. You know the feeling you get when you've medicated away the body aches and the fever and the respiratory yuck? That surreal "I really should be in bed, but I can't afford to miss this meeting/class/date/exam, so I'll just have to suck it up and go anyway" feeling? Or worse yet that "I'm not going anywhere with this 105 degree fever" feeling? People who have these illnesses feel like that alot. More disturbing, we don't always realize that we're not firing on all cylinders. Its like the drunk being the least aware of how drunk they are.

So we develop coping skill and we muddle through as best we can. I've always figured I had the "I just feel too lousy to think straight" variety of brain fog. As my physical symptoms wane, my mental clarity has always gotten better. However, with the diagnosis of Lyme, the spector of actual neurological involvement rears its ugly head. Brrr.

Some experts say that chronic Lyme is not a real thing and that the rounds of antibiotics I've had should take care of the Lyme. Any lingering symptoms I might continue to have are something else. Other experts say that Lyme can hide in the tissues much like syphilis and cause a syndrome very like tertiary syphilis

Interestingly there is also a group of doctors examining the possibilty of a link between autism and Lyme disease.

It would be fascinating if it weren't so damned personal

Training update

2007-01-08T21:09:00.000-05:00

I'm walking about four miles a day at least five times a week and I've lost five lbs. My Lyme symptoms are pretty good. Apart from the knee and hip pain, I'm feeling pretty good. Haven't started PT yet, mostly 'cause the whirl of holiday stuff has prevented me from making the appt. Plus the whole dental saga just continues. I only have a week left on the antibiotics tho'

My dog is very appreciative of the long walks, even when we take the goat. The goat and the dog have become friendly toward one another. However, I absolutely CANNOT let the dog see me taking the goat for a walk without her. I made this mistake over the weekend--my husband and children tell me that the dog spent the whole hour I was gone wailing and whimpering, "She left me! My mama left me! To walk the goat!" In dog, of course. Imagine, a solid hour of "arrrrooooo. Whiiiiiiiine. Rrrrrrfff". The dog forgave me much more quickly than my family did.

Planning

2007-01-07T21:10:00.000-05:00

I'm starting to do some actual planning now. I spend hours poring over the Long Trail Guide and trying to figure out my first section. Part of the problem is that although it takes the average person 3 weeks to hike the LT., I suspect that it might take me a bit longer. I think I will keep my first trip down to just an overnight, perhaps 10 miles. Just to get my legs as it were.

So, I'll hopefully do my first section in June. Black flies are bad then. Need mosquito nets.

Took my kids to the camping store today. My daughter, 11, asks "What is it with you and camping anyway?". I try to explain the attraction of silence and nature and beauty and she just looks at me. Like this:

When I was her age I was Forbidden from playing in the woods by myself. No kidding. My mom was afraid I'd get kidnapped or break an ankle or something. I used to go anyway. Never broke an ankle. I look back on it with a mother's eyes and I shudder actually--I could have broken an ankle and gone a good long time before I was found because of that. It would have been wiser if she's asked me precisly where I was going and known exactly when to expect me. Funny, she used those rules when I started dating.

Isn't it strange the things people consider dangerous? Last spring when I went dogsledding, my father was very worried. He acted as though I was proposing a six month stint in Antarctica rather than a week in Maine. I've gotten a similiar reaction to my current plan from other people. I've heard about the two women who were killed on the Appalachian Trail a number of times. And yet, statistically, women are still more in danger in their own homes than anywhere else in the world. And what about the suicide -machines most of us drive to work every day? I'm much more likely to roll my car off the road than I am to be axed by some crazed hiker.

I am a fairly careful person in reality. I'm told I look adventurous, but I don't feel it. I feel more of a plodder and a planner. I like to do these things but with minimum of risk and a maximum of comfort. I want to see pretty scenery and feel the wind in the trees and listen to the night sounds of the woods, not become part of a survival story.

Toward that end:
I will leave a very detailed trip plan with my husband or a good friend if my husband is with me. I will also post it here.
I will take an extensive first aid kit, including items that may be specific to myself and my companion.
I will talk to as many people who have hiked the LT to get the benefit of their experience.
I will check the weather before I go out.
I will not be afraid to put off a planned section hike if the weather or my physical condition look too dicey.
I will plan for reasonable distances.
I will do my solo section at the peak of the season so that there will be lots of traffic on the trail.

Back now

2007-01-02T13:53:00.000-05:00

Took a little vacation from blogging while my children and my spouse were home over winter break. I hope everyone had a fine New Year.

My wonderful spouse, Bryan, gave me a wonderful Solstice present: a book called Pack Goat. We already own two goats and we really enjoy them. We plan on breeding them next spring and having them as milk animals. This book opens the possibility of using the goats as pack animals.

This has gotten me very excited. One of the things that worries me about my planned trips is the weight of my back pack. According to this book and the other sources I've been looking at, yearling goats can pack 15-20% of their own weight and more as they grow older. If I can train my goats to carry much of my load, that would be wonderful. Apparently this is an idea that is catching on out west although I haven't seen it here in New England yet.

Goats have some real advantages over other pack animals for hiking. One of the most obvious is their ability to walk wherever a person can go. Given that they're mountain critters as opposed to being grassland critters like horses, they tear up the trail much less and are less likely to hurt themselves. Goats are even in keeping with "Leave no Trace" principles; their scat and hoof prints are deerlike, they're relatively quiet, and although they will eat trail side plants, their preference is for woody stems and weeds like dandelion.

I have two goats, both female. One is too old to learn to pack, but the younger one is still young enough that I'm going to try. We plan to breed them in Feb so that the kids will be due in July. Then I intend to hand raise the kids so that I can start training them right away. I might not have a pack goat for this summers sections of the LT, but hopefully for the sections I intend to cover in the summer of '08, I will have a four footed hiking partner or two.

Happy Solstice

2006-12-23T22:37:00.000-05:00

I hope everyone's having a lovely holiday season (whatever one it is that you celebrate).

How Do I know its Lyme? (Part the third)

2006-12-19T12:55:00.000-05:00

When I got back from dogsledding, I got a call from DR. He had that voice they get when they're delivering serious news--I think its the voice we all must use when we don't know how the listener will take something.

DR "Aaah, we got your bloodwork back"

ME "Yeah? okay.

DR "Well, it looks like its postive." pause while it sinks in

ME "No shit? huh. "

DR "I think you should come in to my office where we can talk about it" He's a really nice guy and his tone was very compassionate. I was just nonplussed.

ME "Yeah. I guess so. Huh. Positive? No shit?"
I don't think I've ever had a definitive positive blood test for anything.

DR "And you tested positive for erlichiosis"

ME "Really? No shit? Huh."

I don't come off as my articulate best in this conversation.

The rest of the conversation was a variation on this theme--My bloodwork was positive AND I tested for an old infection AND I tested positive for erlichia which is another tickbourne disease so at some point I had, for sure, been bitten by a pretty sick tick.

I was not as devastated as I could have been. I've been dancing with this for too long. Nor can I really get my hopes up that the antibiotics are going to work some miracle. I've had too many doc's say to me "Oh, this will work for sure" I'd need a whole other blog to list the meds I've been on and treatments that were going to fix me.

I've gotten kind of zen about it. I can't be too hopeful because the crash is too much for me to take if it doesn't work. Been there, and it isn't pretty.

So how do I know its Lyme disease? (Part the second)

2006-12-18T08:40:00.000-05:00

So, intrepid reader, we left off where your heroine had found herself a treatment that worked...

Well, it did. Not completely, I still had bad days, and hot weather is still a problem, but I was feeling much better.

Except, I still had cognitive problems that resembled ADD and I was still vulnerable to every virus that my kids brought home from school. And I was still taking waaay more ibuprofen than is healthy

Taking advantage of my new lease on life, I joined the local volunteer fire dept and found a new passion. I trained as a basic EMT and discovered that I love it. In the absence of children and husband and Lyme disease, I could easily see tranplanting to a major city and working in EMS. One of my aliasis is Ambulance Geek.

I love it.

Partly the thrill, partly because emergency medicine is Western medicine at its very best. I ride with my towns VFD and I road with the ambulance service out of the bigger town next to us for a bit. Sadly, Lyme interfered. Riding with both services was just plain too much for me. Lots of symptoms came back until I went back to just riding with my local service.

I also enrolled in the local Community college. I really would love to go to nursing school. Perhaps in ER nursing. Alas, yet again Lyme intereferes (hmm, this is starting to become a running theme). I suddenly started having really severe headaches. First they thought migraine then they thought trigeminal neuralgia or something called episodic hemialgia. In plain English, this means that sometimes my head hurts. Interestingly I noticed a slight facial droop on the right side of my face.

Still and all, I was feeling pretty well. Well enough that I enrolled in an Outward Bound course.
That was wonderful. I went dogsledding for a week in New Hampshire. I had spent the winter training for it pretty assiduously even though in November I had to have my gall bladder removed and we still hadn't gotten a handle on my headaches.

Just before I left on my dogsledding trip, DR called me and said that he wantedto test me for Lyme disease. I figured "what the hell" and went and got the very expensive test run and didn't think too much about it till I got back.

Continued...

So how do I know its Lyme disease? (part the first)

2006-12-16T10:51:00.000-05:00

As I said in an earlier post, I've been going around in circles with this whatever it is for nigh on 20 years.

I first got sick in High school got somewhat better and then got sick in college.

First they said it was juvenile rheumatoid arthritis.
Then they said it was rheumatoid arthritis.
Then because my joints weren't deforming fast enough they said it was mixed connective tissue disease.
Or perhaps Sjogren's syndrome
Then they played with the idea it was multiple sclerosis or lupus or maybe even leukemia.

Except for the leukemia, there's really no definitive blood test for any of these things. For the rheumatoid arthritis, there's something called the rheumatoid factor, but that only occurs in 80% of cases. And any of these diseases would leave me crippled or dead. Woo-fucking-hoo.

So I did what any normal run-of-the-mill maladjusted 19 year old would do--I moved back in with my mom and had a nervous breakdown.

I grew up with the idea that medicine was a science. I suppose we all do from watching all those doctor shows. On the TV, you get sick, the doctor either fixes you or you die. Preferably quickly and painlessly.

It took me about two years to figure out that I was going to have to live like this. Damn. And better yet, medicine is not a for-sure thing. Most of these diseases are are diagnosed "clinically". This means you're going by the doctor's best educated guess based on a series of rule-outs and guide lines. You can go to nine doctors and get ten different diagnoses.

I have arthritic changes in my joints that are evident on xray. I have osteopenia. I have blood work that looks pretty normal most of the time except my white counts always kind of high and my platelets are often low and my hormones just look a little off. I've had most commonly ordered medical tests. The MRI's and upper and lower GI's and pvp's and more blood work and liver scans and gtt's and all the rest of it: All normal. Nothing to tell me why I felt like shit.

After a while one starts to wonder if one is just crazy. This is encouraged by the fact that the medical establishment and other people in one's life are willing to entertain the idea that one is just depressed or worse malingering. I stay the hell away from such people nowadays.

Flash forward to about 4 years ago. I'd spent alot of time learning how to cope with my symptoms. No treatments intended to cure what was now considered to be fibromyalgia, just strategies designed to help me live the best way possible. I had a job in doctor's office where summertime layoffs were common. Hot weather is bad for me symptom wise so I always volunteered for that. We lived in the South, so I just expected to be sick. I hid out in the air-conditioning and waited for the weather to turn. I had a relatively helpful doc who actually believed in fibromyalgia and prescribed the drugs that kept me on my feet.

My husband got offered a job in Vermont. I was thrilled! He took it and suddenly in the cool dry air I felt better than I had in years. I'm reminded of all those people in the 1800's who moved to Arizona 'cause the desert air was the only treatment for their TB.

After moving across country, I had to find a new doctor. I went to a couple of fibromyalgia websites and found the number of one near my new home. I'm pretty selective about docs, given the multiple baaaad experiences I've had.

This new guy passed all my criteria: Didn't keep me waiting, understood what I was talking about, wasn't threatened by a smart patient, spent time talking to me rather than whipping out the prescription pad and sending me on my way. I'd pretty much found Dr Right (hereafter referred to as DR).

In the first couple of visits, DR asked me about if I'd had my thyroid checked. Well, of course I had. Always it was "within normal limits". DR took what had to be a gallon of blood and tested not just my thyroid, but all my hormones. They were all again "within normal limits", but because DR believes in treating the patient rather than the blood tests, he thought he'd prescribe a low dose of thyroid hormone, because some of my symptoms looked an awful lot like hypothyriodism.

Two weeks after I started on the thyroid medication, I felt like a new woman! I had energy, my hand pain improved and I lost twelve pounds of water weight. I was amazed and also a little annoyed. Perhaps one of the last 25 doctors I'd seen could have tried that? But never mind, I felt better than I had since I was nineteen.

To be continued...

Feeling sentimental

2006-12-15T21:16:00.000-05:00

Pretty good day today. Walked three miles with the dog.

Long walks are great for thinking. Since I'm prone to depression, I try to make it a habit to really notice the good things in my life. Kind of a cognitive therapy thing. So here are three really good things about my life

I want to mention how wonderful my husband Bryan is. Having Lyme is bad enough. Living with someone who has Lyme is really difficult. Over the years I have been quite ill at times and he is wonderful. We've had our problems like everone else, but this year we'll have been married for thirteen years.

I'm thrilled that I'm feeling well enough to even contemplate this kind of hike. I used to believe that I'd never be able to this.

My tooth hurts less than it did yesterday and my three mile walk didn't leave me exhausted (okay, I guess that's four)

I'm tired now--more tommorrow

Notes on my progress

2006-12-14T14:25:00.000-05:00

The training schedule I'm using is the same one I used to get ready for the dogsledding trip I did with Outward Bound last year. I'm starting with 30 minutes of vigorous walking every other day for the first week and weight training. We heat with wood, so I spend alot of time stacking wood anyway and we have chickens and goats--the feed bags weigh 50lbs each.

So yesterday I walked 1.6 miles in 40 minutes. My goal is to double my walking speed over the course of the winter. Eventually I want to be walking at least three or four miles daily.

I had a tooth out last week and (naturally) it got infected, so I'm on Clindamyacin for the next six weeks.

Symptom wise, I'm doing well right now. My sleep is good, and except for my tooth which hurts like a son-of-a-bitch, I'm pretty okay regarding pain. I had a rough summer with pain, but I was on a bunch of antibiotics. I really didn't know where the disease stopped and the drug side effects started.

When I first got sick, and I was presumed to have Rhuematoid Arthritis, I often thought about that. I got very little pain relief from the NSAIDS. Somehow, I always thought it must be something I was doing wriong. Why is it, in medicine, they never say "The drug is not working" but instead "The patient is not responding"?

My Lyme disease is a pretty average case except for the fact that its taken 20 years to diagnose. Oddly, the first Rheumatologist I ever saw was convinced that I had it. She said I was "textbook" in my symptoms and was pretty much set to treat me with doxy right then. Except that the ELISA came back negative. She shrugged and went back to the drawing board. At that time, she didn't even consider ordering a second test.

A little background.

2006-12-13T17:42:00.000-05:00

I want to hike the Long Trail before I turn 40. I'm 38 in January, so I have two whole summers to do it before then. I'm planning to do it as a section hike, since it generally takes three weeks to do it all at once. I'm not an athlete and I've never done a long distance hike before, but the real hitch is that I have Lyme disease. I was Diagnosed in March of '06, but I've pretty much suffered from these symptoms on and off for the last twenty years.

I really, really want to do this. I've had this kind of hike on my life's to-do list for a very long time. I have the support of my doctor and the people around me. My husband suggested I keep track of my training and progress on this blog. I need to do some serious training this winter. I plan to start with a fairly standard training program and my doc referred me to physical therapy for some hip pain I've been having.

I'm contemplating soliciting for donations for Lyme research. Ask for sponsorships for a dollar a mile or something. I don't intend to get into the controversies about Lyme disease treatment--I'm not into that. What I am into is more research and a treatment that works for me and everyone else who's dealing with this.