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  • Nanworimo 2009

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  • 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!

    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”

    “Productive”

    About a week and a half ago, I got a sore throat, I lost my voice, and started creating sinus and chest mucus in large and disgusting quantities. Jay got a touch of this, too, violating our usually hard and fast rule that only one of us can be really sick at a time.

    He was in a bit better shape one day, and so got sent to the store to buy as many boxes of tissues as he could carry (with and without lotion – he loves the lotion version when he’s sick). He was sneezing like crazy, and I was blowing my nose about once every ninety seconds. We have filled paper bags with snotty tissue all over the house.

    I also got nasty aches (worse than my normal Lyme pain), extreme exhaustion (even for me), chills, and a low-grade fever. My lungs got involved early on with a wheezing, “productive” (doncha just love that word?) cough that has me worried I could have pneumonia or Pertussis. I was diagnosed with Pertussis, or Whooping Cough, a couple of years ago. It was not fun.

    I’m not coughing hard like I did two years ago, but that may be because I’m working hard at not coughing. When I do, it hurts and I don’t like worrying that I may toss my cookies (or experience what my Mother, the nurse, used to call a, “Green Burp.” The less said about that phenomenon, the better).

    So far, no cookies tossed, although I came close last Tuesday when I lay down so Jay could give me my IM Bicillin injection. Once I realized what was going on (or coming up), I made a mad dash to the bathroom (which is thankfully close). I got there in time to experience the aforementioned and much dreaded Green Burp, but avoided anything worse.

    Laying flat has turned out to be risky business. I spent three nights sleeping on a recliner because if I lay down, the phlegm in my chest took it as an invitation to come on up and have a party. I told Jay that while I miss the cuddles with him, I figure barfing in bed is just not very sexy. No argument from him there. We were both relieved when I was able to join him in bed again (propped up on pillows, mind you), two nights ago. Cuddling was reduced to playing footsie, since, once propped up, I really can’t move without inviting trouble.

    After a week and a half of this, Jay is thankfully much better and I’m a little better, too. He’s still sneezing. I’m still wheezing. I see my primary care physician for a “touch-base” visit and blood tests this Friday. If I’m still sick, I’ll see what she thinks about Pertussis or pneumonia.

    On a happy note, I started a new serious-ass pain killer this week (Oxycodone). And my LLMD also added oral Doxycyclene to kill the Erlichiosis. I’m afraid the pain killer is too low a dose –  it seems to wear off after four or five hours when it’s meant to last 12, and most of the time barely takes the edge off my pain. But I have high hopes for the Bicillin/Doxy combo.

    I’ll keep you posted.

    The New Normal

    If you’re keeping score at home, I’m up to eight IM Bicillin injections over the last four weeks.

    The herxes seem to be getting milder, especially compared to the morning I couldn’t walk. My reactions since then are more confined to the “regular” type: Increase in muscle and nerve pain, muscle twitching, shoulder spasms, joint pain (especially in the hands and fingers), cognitive/memory decreases, dizziness, decreased depth perception, vision problems, heart arhythmias, increased anxiety, etc. (It’s a very long list.)

    There are occasionally strange and new twists, like a new muscle aching or twitching, or a new level of memory loss (especially long term memory — I seem to be losing more bits than I used to). And I got a strange blood blister on my glute a week and a half ago (not related to the injection — could be Bartonella from what I’ve read).

    But mostly the Herx reactions have simply been worsening of my current symptoms. For which I’m grateful.

    I would give a lot to be able to take a strong narcotic every day, but that is not an option for me at this point. So I stick to the Lidocaine patches for pain in my body core and use my Alpha-stim device for extremity pain and anxiety. My emergency stash of Tylenol 3 kills pain system wide for a little while, which improves my mood, emotions, ability to get around and do things. It even improves my focus a bit.

    What I’ve learned from narcotics is that chronic pain is a terrible deteriorator. It eats away at my energy, darkens my worldview, draws a filmy curtain between my truly difficult present and any possible brighter future. The bleak looks bleaker. It seems as if pain has been my constant companion, my only companion at times. I have lost my ability to remember what a pain-free day is like. I can’t imagine a pain-free future at the moment. Like Frodo on the slopes of Mount Doom, I’ve forgotten the taste of strawberries and the feel of grass beneath my feet (sorry – we watched the entire movie trilogy in the days leading up to New Year’s Eve.)

    After a while, I’ve noticed that constant pain starts to fade from my consciousness. If it did not, I wouldn’t be able to get up in the morning.

    There are times I might say that I am fine, I feel normal. What this fails to communicate is that my new “normal” is a pain level of 6 or 7 (10 being the worst pain I can imagine. My symptoms grow interesting only when they hit an 8 or 9.

    Even then, I probably won’t mention a new or painful symptom because I know there’s nothing to be done (other than Lidocaine or Alpha-stim, if I can). And people glaze over hearing about my symptoms. Even I glaze over. It’s boring. It’s simply too much to take in. This amount of suffering is hard to imagine, almost impossible to believe. Even for me, and I live and breathe it.

    Now that I know what is causing my symptoms (neuro-Lyme or other tick-borne infection), I rarely panic. There’s no need to call a doctor or visit an ER unless I’m bleeding or have stopped breathing. Or if I have classic heart attack symptoms (different from the heart pounding arrhythmia that can drives me just wild).

    So it must simply be borne while I use medicine to try and get well.

    Does all this sound like whining? It does to me, and I hate that.

    But it is what is real. As I’ve said elsewhere, I’m sick of pretending that I’m “fine.” And by telling the truth, even if it’s only here in my blog, a layer of stress is lifted off me, which makes everything a tad easier to bear.

    All part of the new normal.

    Herxing

    My last IM Bicillin shot was last Saturday. It was more painful than usual, even though Jay was very careful and we did everything right. Hot bath and heating pad afterward, everything.

    Sunday morning I woke up at 5:30 AM (had to use the loo), but I couldn’t walk. My right hip, the one that didn’t get the injection, was in so much pain I could not move or put weight on it. The left hip hurt like holy hell from the injection, but at least I could put weight on it. I really didn’t want to wake Jay (he already does so much for me), so I rolled slowly out of bed, and took about five minutes to get myself to a standing position.

    It took me another five minutes to lurch 15 feet to the bathroom, gripping the bed frame, walls, door frames — anything to keep from falling. Getting back was not any easier, but I did it with lots of loud gasps. Before I went back to bed, I put a Lidocaine patch on the right hip in hopes this relatively new painkiller would help.

    (Although I have some for emergencies, my doc is discouraging me from using narcotics for pain because they interfere with what the antibiotics are doing. Something about hindering recovery of the mitochondria, but I glazed and couldn’t understand what she told me.)

    The round trip took a record 30 minutes. Although I prefer to sleep on my sides, it was out of the question since both hips were in agony. Miraculously, I slept for two more hours (on my back). I had two dreams. In both, I was in my wheelchair. That’s a first.

    My right hip was a bit better when I finally got up, but if I had to move, I was lurching, yelping and gasping. Not surprisingly, I spent most of it on the couch. Doing so, I managed to avoid narcotics, hoping it was just a one-day Herx.*

    It wasn’t.

    But everything got a little better a little at a time, although my right knee, shoulder, neck, and hands also caused pain for portions of the day. By Sunday, I was able to run errands (Jay had to drive), although I was still lurching.

    Today I am better again, and my right hip pain is much reduced. Which is good, because I am due for another injection tomorrow.

    My doc tells me the Herxes should get shorter and shorter. Hope so. We’ll see. I’ll keep you posted.

    *Herx is short for Jarisch-Herxheimer reaction, …”an increase in the symptoms of a spirochetal disease (as syphilis, Lyme disease, or relapsing fever) occurring in some persons when treatment with spirocheticidal drugs is started.” Merriam Webster’s Medical Dictionary. The common understanding is the increase in symptoms is due to bacteria die-off, which cause toxins that make you feel worse before you get better. I have a bad feeling a Herx is the damned bacteria fighting back, but that sounds like a really bad horror movie plot, doesn’t it?

    Not Much Cheer This Year

    Gee, I’d sure love to write something uplifting during the holidays. Not likely this year.

    On the other hand, I am managing to remember that I am not yet bed-bound, not yet so disabled that I can’t walk at all — I need the power chair only for distances of more than a block or two. I can still breathe on my own, and my heart still beats (even if it does so with a nasty, though harmless, arrhythmia that can scare the hell out of me). Pain, while constant, is unbearable only for spurts. And I seem to be getting used to it (good thing since I seem to be allergic to most pain medications).

    For this holiday season, this dark time of the cycle of our planet, I guess I’m giving up the façade of acting happy, OK, or pretending that I’m getting by. At least here in my blog. I am (some would say finally) taking stock of what I have lost. Here’s a bit of what goes through my mind.

    If I had not become infected when I was so young (30-40 years ago is one guess, probably in my teens), perhaps I would have been more resilient when family, lovers, and friends failed or betrayed me. I would have been less devastated, more outgoing, perhaps made better decisions. I believe I would have been able to bounce back more fully than I did when horrible things happened.

    But I didn’t bounce back. And as the years wore on, bacterial infections started taking my life piece by piece. Continuing with that all important ability to cope with disaster.

    I actually showed considerable ability to cope early on. But I believe that neuroborreliosis (and the other tick born illnesses I’ve got) slowed — and then halted — my ability to rebound. It wore me away over time.

    If I had not become infected, I’d have a body of artwork by now. I know I’d have an art studio and be producing (and selling) wearable art. I would be spinning and knitting and felting. Weaving. Sketching. Creating polymer clay creations. I would be designing and sewing clothing. Pursuing all those creative passions that give me so much joy.

    My career with them was halting in the first place (due to illness, resiliency, etc.). Now, because I can no longer use my hands all that much, I’ve given away or sold most of my art supplies. The rest are in storage, which is silly. It would cost less to get rid of them and rebuy them (if I ever got well again) than to pay for storage each month. But I don’t have the energy to go through them. So there they sit.

    I would have been writing seriously for decades. I would have published articles regularly. I might have written a book. Or two.

    I wouldn’t have sold my piano ten years ago, when my hands stopped working. I would still be playing classical and jazz and who knows what. My heart still breaks when I remember I no longer have a piano. And that if I had one, I couldn’t play.

    And this fall, I found out that I can no longer sing. I took a vocal performance class, and found that my body is too frail. Singing, I remembered with a shock, is physically demanding. Don’t know what I was thinking. But it’s still a shock.

    And let’s not forget my inability to work. Generate income. Bring home the bacon. Since becoming disabled, my income has been cut down to about a quarter of what I used to make. And the cost of insurance takes about a quarter of that. If I were able to work, well, let’s just say things would be a whole lot more financially secure. And I’d have the joy of going out into the world, which I miss terribly.

    I would have friends. I know what it feels like to have had them. At the moment, I know what it means to be very, very lonely. Which is infuriating because I know how to make friends, good friends. But one must be well to do that work. And it is work. It requires creativity, commitment, and reciprocity. Energy. None of which I’ve got.

    Finally, worst of all, is my inability to volunteer (a great way to make good friends, by the way). For a while, when I became so sick that I could not work any more, I dreamed of being able to volunteer in meaningful programs locally with all my new “free time”. What a dope!

    First of all, I was (am) in such denial that I didn’t (don’t) realize that I’d become (I am) one of the “less fortunate” who need volunteers to help them out.

    Second, a chronically ill person has no free time Or energy. It all goes toward treatment management, symptom management, recording symptoms and medications, doctor’s appointments, and everyone’s personal favorite, sparring with one’s medical insurance company. All other normal chores (paying bills, cleaning house, doing laundry, cooking, marketing, family engagements), fall to the bottom of the priority pile. They often don’t get done at all. (Thank god I have a partner who pays bills, or I’d be in jail.)

    There. It’s not a complete list, and I reserve the right to add to it later. It’s just what’s on my mind at the moment.

    Bad, Not So Bad

    My Lyme doc called me Tuesday to let me know that my recent blood tests for Lyme and other tick borne disease (TBDs) may have set a new record for positivity. She’s sending me copies, which I’m anxious as all get-out to see. I mean, anxious as in obsessed. Anxious as in I won’t be able to stop staring at them and studying them for at least a week after I get them.

    Which makes no sense, logically. As my doc said on the phone, these results tell me three things:

    1. They explain why I feel so very, extremely bad (I’m really, really sick).
    2. They tell me that my immune system is trying to work (the tests measure antibodies).
    3. They tell me that I do, in fact, have Erlichiosis (another TBD I suspected I had, but tested negative for last year).

    Even though I know that’s all I’m gonna find on the sheets of paper I’ll get in the mail, I won’t be able to stop myself. I’ll take them apart line by line. Ask my Lyme expert friends on my favorite Lyme message boards what they they think. I will do this because, well, because there’s so little else I can do. And I suppose just in case there’s a new clue to be found about… what?

    But these results won’t tell me when I got sick or why. They won’t tell me any more than the three points above. Even so, I guarantee you I’ll study every number until I know what it means. And then I’ll forget most of it because my short-term memory is so seriously impaired. (No, not like your usual, “I forgot where I put the keys” impaired. More like “I’ve-had-a massive-brain-injury” impaired.)

    Back to Tuesday night. After delivering the test result news, my doc decided that I need two IM Bicillin injections per week, not one.

    So, last night Jay gave his very first shot to me. I didn’t want to say anything to make Jay nervous, so I didn’t tell him I was terrified. I pulled out all my old acting technique and tried (with only moderate success I fear) to appear perfectly calm. Jay may have been nervous, but he didn’t show it. His calm made me actually start to FEEL calm.

    And we did everything right: I relaxed on the bed, toes turned in and wiggling (relaxes the glutes). Jay did a very gentle pinch and stick. He aspirated (no blood). Then slowly, very slowly, he pressed the plunger full of medicine into my right glute.

    I winced a very few times. He slowed down even more. He spent the whole time telling me what a great job I was doing, sounding confident and soothing at the same time.

    Before I knew it, he was done — I had hardly felt a thing! I had a steaming hot bath waiting (recommended by my doc) in which I soaked for 10-15 minutes. I dried, got into snuggly jammies, and wrapped an infrared heating pad around my insulted bun. Then proceeded to watch bad TV until we went to bed (also with the infrared heating pad).

    Today I was able to walk to the bus and travel to have coffee with some writing buddies. I was pretty wiped out when I got home, but I couldn’t have done this last week, after the clueless tech gave me my first shot.

    My bun is still sore, but so, so much better than last week. Jay is a genius. I am very lucky.

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