• Leave a Comment!

    I really love to hear from you.
  • Enter your email address to subscribe to this blog and receive notifications of new posts by email.

    Join 7 other followers

  • Nanworimo 2009

  • Blog Stats

    • 10,606 hits
  • My Flickr Artwork

    More Photos
  • “I know what Lyme has done to you and how narrowly you have survived thus far.”

    I read an essay today that made me feel normal — and even slightly hopeful — for the first time in years (it’s been a really hard few years).

    It’s a little long, but beautifully written as an exercise by Lyme survivor Jennifer Crystal in the style of the great James Baldwin, so worth the extra few minutes. I found it powerful to read it aloud.

    If you are chronically ill with Tick Borne Illnesses or know someone who is, I’m putting this on your Must Read List:

    “Letter to a Lyme patient, written in the style of a famous essay by James Baldwin.”

    (From the lymedisease.org blog: Touched By Lyme.)

    August Blues

    I’ve been waiting for things to take a wonderful turn for the better so I can report something lovely. Hasn’t happened, so here’s the boring, difficult truth.

    The June uterectomy/ooferectomy surgery was a success (seems I had debilitating endometriosis), and I still have one healthy ovary intact. Also survived a July, fully of birthdays and anniversaries with my soon-to-be-ex-spouse (we had a good time together).

    But now I am slogging through August trying to continue to recover from surgery while adjusting to new Lyme meds, restarting physical therapy and non-aerobic walking while finishing legal paperwork for the divorce and taxes.

    It is all hard, all painful, and from day-to-day seems overwhelming if not downright impossible. I am better in some ways, but am so extremely fatigued that I have the energy for maybe one task per day. On a remarkable day, two. Simply scheduling an energy audit seems undoable, and I really must do it. My electric bill is off the charts — way too large for my small place. And I must also find out what has happened to my application for Medicare B. And apply for some other state services I may be eligible for now. I am still not unpacked — haven’t been strong enough. Haven’t been able to think clearly enough to organize. One of the reasons I put off the energy audit is that I’d like to have a few more things put away and have easier access to all things electric. Hasn’t happened yet.

    On top of it all, I am grieving that the life I planned for is completely gone, forever. This takes far more energy that I would have guessed. Small wonder I find moving forward near impossible.

    In spite of all this, I think I am a little better, post surgery, although it is nearly impossible to tell only seven weeks out what with all the fatigue. I still need pain meds, although not very much, mostly for Lyme pain. But I’m not writing (reflected in lack of blog entries) or creating any art. A very bad sign.

    I read a meditation last night that asked me what gifts I would ask from the Universe to help me through this difficult time. It has never occurred to me to ask for gifts, and I found it impossible to think of anything to ask for since every good thing I have wanted seems to be taken away from me.

    So, I guess if you read this, send good thoughts my way, and wish me the energy I need to do what needs to be done. That would seem like a miracle at this point.

    Blessings to you all.

    Surgery #3 Next Tuesday

    The belly pain and nausea are not going away. Pelvic ultrasound (what a euphamism!) shows I have a cluster of cysts on my right ovary that do not look normal, and a 5-7 cm uterine fibroid off to one side. Nothing to panic over, according to all the docs I’ve been dealing with during the last year. More, really. All this has shown up on my imaging for many years.

    But because the cysts look abnormal and they could be causing or contributing to my symptoms, they’ve gotta go, along with the ovary they are tangled up with. In. Whatever.

    And since I’m not really using it, and the fibroid could also be involved with my symptoms, I decided to let them take my uterus out, too. The left ovary looks to be in good shape, so I will keep that and thus be able to make my own hormones, which is VERY good.

    All will be done laparoscopically, which will:

    1. Make for a longer surgery

    2. Make for a shorter recovery time (2-4 weeks, we’ll see)

    3. Add to my belly scar collection

    My GYN, whom I adore, assures me this is an outpatient surgery, and that I can climb the stairs to my apartment that very afternoon. But she told me I can stay in hospital overnight if I need to.

    So think of me next Tuesday. Before that, too! I have to try and unpack some more and get my place organized and stock my fridge, etc., while I am in what is now a constant state of nausea, and thankfully, only moderate belly pain.

    And I hope, hope, hope that, after recovery, we’ll find out that these things were the cause of all my belly problems. Wouldn’t that be great? If not, the search continues, although my periods will not. That alone is going to be helpful!

    More as it happens.

    Am I Better?

    When I sleep tons, and I mean 10-12 hours or more, I feel okay. As long as I do nothing. I can do some things, like walk a little, do my physical therapy (very mild) exercises, continue to unpack boxes, go shopping, cook, pay bills, write in my journal, or even work on a small volunteer project. But I must usually pick one of those things per day. Really. If I do more, I will pay.

    This is especially true since the separation from my husband is not  complete, and we can’t agree, so he’s insisting we go to court, which will drag this out for at least a year. Which reminds me, I need to drive to court to make sure they get my change of address (I moved last month to a hopefully permanent apartment… moving again may kill me). I am certain the stress of this unexpected change is wearing on me.

    I periodically push myself to do a large volunteer project just to test the waters, which usually wipes me out for a week or two after, depending on the demands of the project (big pushes and late nights = bad idea).

    But then, I’m not being rushed to the ER every two weeks in excruciating pain like last year. That’s an improvement. I think I am physically feeling better, but only when I do nearly nothing.

    So am I better? I really really don’t know.

    KQED Inteview With Lyme Book Author and Movie Creator

    Click this link for a beautiful interview with the people who created the groundbreaking book, Cure Unknown, and the film, Under Our Skin from KQED, San Francisco:

    Lyme Disease
    The tick-borne illness Lyme disease is on the rise — but many patients and their advocates say the disease is often underestimated, misdiagnosed and improperly treated. We discuss the effects of Lyme disease and the controversy surrounding its diagnosis and treatment.

    Host: Dave Iverson

    Guests:

    • Dr. Eugene Shapiro, professor in the department of pediatrics at the Yale University School of Medicine
    • Kris Newby, senior producer of the documentary “Under Our Skin: An Infectious Film about Microbes, Money and Medicine”
    • Pamela Weintraub, author of the book “Cure Unknown: Inside the Lyme Epidemic”

    Out of comission

    Sorry I’ve been off-line for so long. Have a good excuse, though. In the space of six weeks I’ve had:

    • Three trips to the Emergency Room
    • Two surgeries
    • One diagnosis of a very rare condition (Mucosal Fibrosis)

    All this in addition to my lovely chronic TBI (Tick Born Illnesses). As you may have guessed, I have lots to say about the sad state of part of our health care system. More later as I get better.

    Imaginal Goo

    Once again, I’ve taken a long break from blogging. In the past, that’s usually meant I’ve been stomped flat by an increase in pain and misery from this mysterious illnesses. And while I have continued that dance, mostly I’ve been on a body/mind/spirit sabbatical. Literally.

    I feel like I’m in a cocoon, where I’ve recently learned that the baby butterfly (larvae) literally disintegrates itself into goo before it reconstitutes into the fabulous flying creature it is meant to become. Some texts call the cocoon a “resting” stage.

    That’s one way to look at it.

    What’s really going on is that miraculous transformation where “imaginal disk” cells, now goo, somehow know how to metamorphasize into legs, wings, antennae, etc. in a process that is truly the stuff of dreams and mystical stories. Eventually what will chew it’s it’s way out of that “resting” cocoon is a transformed being, with colorful wings that will soar free into the sky, pollinating and laying eggs, creating more life and beauty.

    I am really, really looking forward to flying. But right now, I’m goo.

    It all started in February when I decided I needed to get away. By myself. After considering lots of options, including Las Vegas (the very nice woman from the travel agency’s best deal was at a Hooters Hotel… “It isn’t that bad,” she insisted. “Just last month I sent a bunch of little old ladies there and they had a blast.”), I wisely decided on a hermitage in Wisconsin, The Christine Center. I tried to get into my favorite hermitage in Minnesota, The Dwelling In The Woods, but they didn’t have a two-week opening until July.

    At The Christine Center, I made that subtle shift from being in an illness process to being in a healing process. This has been a long time coming.

    When I first got sick, I fought it tooth and nail. And then, I suppose you could say I went through every stage of the grieving process until I got to an unsettled kind of acceptance.

    During the past five (or whatever) years, I’ve danced that fine line between making the illness my identity, and simply accepting that this is what’s happening to me in the moment. Eckhart Tolle’s book, The Power of Now, saved me from the deepest, darkest dungeons of despair too many times to count.

    During this time, I’ve made it my job to explore what it means to be this sick. And to be sick with a mostly invisible illness. Unless I’m in my wheelchair, I usually look pretty good. Only Jay, my spouse, has been witness to the hours, days, sometimes weeks of agony that sometimes lands me in bed moaning and crying with pain that my “pain management methods” can’t control. 

    Back to February. At The Christine Center, I worked with a healer who uses Myofascial massage. She is also an amazingly happy and successful practitioner of the law of attraction, intentionality, and manifestation. She spent part of our first healing session coaching me in the language I used when I discussed the experience of this illness.

    Of course, I instantly knew what she was talking about. I have been a student – and occasional teacher – of manifestation, beliefs, affirmations, and healing. I am a Reiki Master. I’ve been trained in at least a dozen methodologies of pretty far out energy healing modalities by some wonderful teachers over the past thirty years, starting from when I was 13 years old.

    But I put all of that on hold when I got sick. For two reasons: 

    1. I felt a strong inner guidance that I was supposed to fully experience this particular illness and disability for some reason that would become clear in the future. I felt practically “told” to take a break from healing, myself or others until further notice.
    2. I felt worried that I’d done something wrong in my healing practice that caused me to get sick, and that I had better investigate this possibility before I continued.

    I instantly started changing the way I spoke about this illness, and I created three simple affirmations that I could sort of believe.

    • “I feel good.”
    • “I am well.”
    • “I have amazing strength and energy”

    Almost immediately, I started to get an inner message that it’s time to start fully experiencing the process of healing, as opposed to the process of illness. And I started to feel better.

    Since then, dozens of synchronisticly mystical things have happened, including running into some of the best teachers on the planet, sometimes by book, sometimes in person (Martha Beck, Joe Vitale, James Ray, Esther Hicks, to name a few).

    I saw Martha Beck in person at a bookstore reading. Went to an amazing two-day seminar co-sponsored by Joe Vitale and Mark Ryan that featured six more incredible presenters. Watched DVDs and read books that are all teach the fine art of transformation.

    I’m slowly, but surely, studying all these materials. They are helping me remember that I need to remember what I’m here for. Or at least to find my “North Star” as Martha Beck puts it. 

    So, if you haven’t heard from me, or I don’t return calls or emails as quickly as I should, please keep in mind that I’m in a gooish healing and learning (re-learning) process that is taking nearly all my energy. 

    Please keep in touch anyway. Thank you for your patience. And I’ll try to keep you posted more regularly. 

    Exciting times. Exciting times. 

    %d bloggers like this: