Sugar season/mud season

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

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

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

Tend and Befriend

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

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

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

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

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

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.

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

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

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

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

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

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