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  • Nanworimo 2009

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  • “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.)

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    Spring Haute Dish is Out!

    Haute Dish: The Arts and Literature Magazine of Metropolitan State University

    Haute Dish: Spring 2011 edition

    Haute Dish: Spring 2011 is here! This is old news for those in the know – I’m behind, what with moving and packing and now unpacking. I have four pieces (!) in this issue —  I’m a lucky girl. It’s a gorgeous issue. Enjoy the entire thing online. Lots of good writing and art.

    And call those in charge crazy, but I’ve been invited to become Managing Editor of this illustrious publication starting this summer! I am terrifically honored, excited, and happy.  And terrified. I mean, have you SEEN how cool this thing is? I have big shoes to fill. (And nice shoes too… the current Managing Ed. has great tasted in footwear.)

    Noah’s Blog

    My nephew has started a blog. He works hard to write each paragraph, which has inspired me to think about what I am doing here in my blog. So, like my nephew said in his most recent post, I will try my best to write here more often. Thank you Noah.

    I’m published in Haute Dish!

    Haute Dish, Fall 2010

    The literary magazine at Metropolitan State, Haute Dish, accepted two of my poems! (Thank you, poetry editors!) Click here to see them!

    The rest of the journal is also darned wonderful. Click here for the front page. Great art, prose, and poetry.

    It’s a fabulous organization, a beautiful publication (the hard copy will be out soon), with a really fun editorial board. I am now a member of that board, and have the good fortune of being able to cavort with extraordinarily talented individuals. Especially our chief editor, Alicia Catt, and our faculty advisor, Suzanne Nielsen (No, I am not sucking up haha. Ok, maybe a little).

    This publication has been going for six years—most literary journals fail after five. That tells you something right there. Quality my friends.

    Catching up: The last 1.5 years

    I haven’t written much in the past year and a half because, well, they sucked. And one can only whine so much before you bore yourself, not to mention others. Downside: I have found that new or potential friends will run screaming if you are truthful about how bad things really are. Upside: I’ll have plenty of material for writing in the future.

    For those of you who I’ve recently befriended or refriended, here’s a short, edited, slightly (sometimes extremely) whiny list to catch you up.

    Chronic Lyme disease. Which, symptom-wise, is like saying I have ALS, MS, CFS, FMS, and occasionally Tourette’s. Short term memory is far worse than it should be (between 5% and 35% of expected). My body acts like is is near 70. I can be reasonably fine one minute, then unable to move without screaming the next. No warning. I treated the Lyme for several years, and am lots better (don’t need the power wheelchair at the moment, for example). This may be the plateau I must live with. The worst part is that it’s largely invisible. If you look at me, I probably look healthy. Sometimes that’s great. Sometimes it’s awful. I know there are people far worse off than I am. In fact, I use Stephen King’s quote about recovering from nearly being killed by a crazy man in a van: “You try to tell yourself that you’ve been lucky, most incredibly lucky and usually that works because it’s true. Sometimes it doesn’t work, that’s all. Then you cry.”

    Divorce last year. It seemed like something that happened to someone else, like a car accident. I didn’t see it coming, which goes to show the depth of denial in which I can live. Yes, even after all those years of therapy. Damn.

    Foreclosure. Lost a beautiful home/condo in downtown St. Paul to foreclosure, tied inextricably with item 2 above. For details call or email me. I gave the place to my ex in the divorce. Even so I found myself left me open to a…

    Lawsuit from the condo association. My ex paid nothing to live in the condo during the foreclosure (1.5 years), so the association is suing both of us for, I think it’s over $20K now. My ex didn’t get a job as promised. The place was unsellable due to association problems with plumbing. Blah, blah, blah. I stopped living in the condo the moment I couldn’t pay out of my SSDI. None of it matters legally. My ex lives with his parents when the foreclosure ended earlier this month. He will go through bankruptcy. I’m waiting to get served.

    My family suffered a year from hell. One sibling survived a nasty bout of cancer, and is still recovering from the treatment. Another sister is suffering from mental illness. She and I share stories of battling the SSDI system, the medical system, etc.  Safe to say that my family has been busy with their own serious problems to be a resource for me (except for Margie in January 2009, who saved my ass by helping me move out of the condo in a hurry… amazing). This has felt surprising and difficult.

    Turned 52 last week (July 21 if you missed it). Got a few cards (some $ – thanks Dad!), a lunch with my Dad, sister Margie, and niece Meaghan (thanks again, Dad!). The Facebook birthday greetings were amazingly meaningful – seriously! Kind of like having a party without having to do the work.

    Going to school for a BA in Creative Writing at Metro State University. Wanted to start an art-related MDiv, but didn’t qualify for the scholarship without the BA. Just started this past summer term. Every step is a test to see if my bod and mind can hack it. I’m on the edge right now, end of term with two classes. Also, it looks like I might have screwed up the financial aid paperwork for fall. The red tape is worse than the classes. Today the deadlines feel like they might kill me. Talk to me in four weeks when it’s over.

    Church. Joined a rather radical Lutheran church at the beginning of the divorce. The illness had left me isolated and friendless. Really. I needed support and found it at Pilgrim Lutheran Church. I’m really a UU Pagan, but I feel at home at Pilgrim — as much as I can in any church.

    Friends. Have grown closer with a handful friends, for which I am grateful.

    My apartment is close to my church, which means I can usually get to choir practice and services, even if I’m having an awful day. It’s not quite big enough to house me, a writing area and an art area, but I’ve shoehorned it in anyway. Still have unpacked boxes. Hard to get up and down stairs (no elevator, third floor walk-up). So I just live with boxes piled like furniture. It’s small, but easier to clean, right!

    Of course there’s more. These are the highlights. I’m sure I’ve missed positive things because it’s hard to see them during a dark time. Like going out with some of my best friends, including Don (who I think recently turned 80), to see Don’s grandkids in a community production of Hello Dolly last summer. Totally fun! Or that I sang for a while with a woman’s choir called Cantara for a while — got to perform once at the Summer Solstice Fire Service at Lake Harriet Spiritual community. Very cool. Or hot, actually!

    There’s always more. For that, you’ll have to call or write. I’ll answer or reply if I’m having a good day.

    Thanks for reading. Cheers!

    Nanowrimo Coincides with Semi-Annual ER Visit!

    Nanowrimo Rebels! It has begun! This year, I waited to see what writing needed to come out – fiction or memoir. And once again it is (drumroll please) creative non-fiction. I have some fiction in here somewhere, but memoir is in the way. So many stories, so few written down…. from this year and last anyway. Memoir now. Fiction later. And maybe they’ll collide, in the end.

    And so, even though am still disabled and am now in the sad, post-divorce situation where I must work part-time in order to make ends meet, I’ve managed to keep my word count relatively on track. Even more remarkable since I’ve had the flu this week.

    In fact, I finally called the MN state flu phone line yesterday after being pretty sick for two days – fever, icky cough, headaches, huge fatigue and body pain to write home about. If you know me, you know that if I’m complaining aboaut extra fatigue and pain, that’s pretty remarkable. The flu hotline nurse didn’t like that my breathing wasn’t as easy as it should be, or that I heard crackling at the beginning and ends of each breath. In fact, she told me I must go to the ER RIGHT THEN to be checked out.

    This was a huge mistake. I knew it at the time, but chose to believe the nurse’s concern. But I may have finally learned my lesson: In the US, do NOT go the ER unless you have stopped breathing or can’t stop bleeding. Or you are in uncontrollable pain. If you go with anything less than a life-threatening situation, they will make you wait in agony for five hours, then tell you, “Guess what? You are sick. Go home. Take cough syrup. Use a humidifier. Don’t breathe on anyone until you are all better.”

    This was the result after six hours of being ignored in a puke-scented waiting room, not getting the blanket, water, or pain medication I needed so badly that I was weeping say, 70 percent of the time. I would have been much bettter of at home. I’m pretty sure my escapade to get health treatment will extend my illness by several days.

    Especially disappointing was that my “primary provider” at this ER was a nurse practitioner. I usually love working with NPs, often finding them to be far more knowledgeable, open minded, and helpful than your average MD off the street. Not this time. She particularly did not like that I am disabled by Chronic neuro-Lyme.

    Within the first minute of our relationship, I realized she was bought into the Infectious Disease Society’s criminally negligent guidelines for treating chronic Lyme, and did not want to hear anything that conflicted with them. This had the, some would say, miraculous effect of impairing her hearing, memory, or focus when around me. She was clearly annoyed that I had so much information about my health and treatment options. I do not expect this in a nurse practitioner, especially at Abbott NW Hospital where I have had good experiences before. (Although this was my first ER visit there. And probably my last.)

    Well. What does not kill you makes good writing material. And material, dear friends, I have in abundance.

    I’ll keep you posted as the month goes on.

    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.

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