Magical Mystery Meal

We had a really amazing shabbat (sabbath) meal on Friday night. I made Indian food -- a real treat since there are no kosher-certified Indian restaurants anywhere near D.C., and because it's a nice departure from typical shabbat foods. I have never used as much fresh ginger in one meal as I used to make this one. Specifically, I made the following recipes:

Garden Vegetable Soup (ok, this is not Indian, but I didn't have it in me to make rasam): . I cut the olive oil in half, and omitted the corn and potatoes to keep this soup starch-free for my food plan. I also added a parsnip because I had one that needed to be used up. The leeks and lemon juice gave this soup an unanticipated freshness.

Indian Spiced Chicken: Because the laws of kashrut [Jewish dietary laws] forbid mixing milk and meat products, I substituted equal amounts of plain soy yogurt for the yogurt and plain, full-fat soy milk for the half-and-half. Having had Indian food consisting of meat cooked with dairy for much of my life, I can attest that by the time I added all of the wonderful seasonings, you honestly couldn't tell that I used soy products in my adaptation. I also substantially cut the honey in this recipe.

Chickpea curry: I used Muir Glen organic canned tomatoes, which Cook's Illustrated ranks as the best-tasting canned tomatoes. The garam masala spice blend is from Penzey's, an amazing spice company. My Orthodox rabbi told me their spices are acceptably kosher even without certification, because we verified that they do not use any drying agents, which are the chemicals that can pose a problem with the kashrut of spices. This does NOT apply to the Penzey's blends which have cheese, of course, but any straight herbs or spices, or regular spice blends, are fine, according to my rabbi. Yesss! If you are uncomfortable using Penzey's without certification, McCormick's Gourmet Collection includes garam masala, or you could make your own. Just remember to toast the spices in a hot, dry skillet or you will not get the taste you're looking for.

For my curry, I used fresh chick peas instead of canned. I've recently started using the bagged beans instead of canned to cut down on exposure to BPA, and I've found they are so much tastier and have a firmer, more pleasing texture than their canned counterparts. I cook a whole bag at once and then freeze any excess in individual portions, then defrost them as needed.

Roasted Cauliflower with Indian Seasonings: Spicy and yummy!

Additionally, we served basmati rice. Lydia made delicious challah, traditional Jewish egg bread, and David made his amazing home-made applesauce. Our guests also complemented the wines we served.

But beyond the food, the meal felt really special: we had two lovely guests visiting from New Jersey who contacted our shul [synagogue] for shabbat hospitality. You never know who's coming your way when you accept hospitality guests -- crazy and/or inappropriate guests do show up -- but these young women were really delightful and contributed meaningfully to the conversation. They were also superbly grateful, which was nice. The conversation was a nice balance of serious topics and humor.

Finally, I felt really good about the spiritual tenor of our shabbat meal. I lapsed into a bad habit of shabbat being a passive day where I observe all the restrictions of the day -- no phone, computer, driving, manipulating electricity, hard exercise, cooking, etc. -- but otherwise, shabbat had very little spiritual content. I'm trying to more actively observe shabbat, dwelling in the spirit of the day, really internalizing the spiritual rest that it is supposed to convey, and remembering that shabbat is a partnership with God. We (and all of our animals and "servants") rest because on shabbat, God rested from the work of creation. To that end, I'm trying to attend synagogue more regularly, although certainly NOT every week; nothing gives me pleasure like slipping back into bed with Kacy and the Washington Post after a leisurely breakfast on shabbat morning. Shul or not, I've committed to saying at least one liturgical prayer service over shabbat as part of my "put spirituality back in shabbat" campaign.

Another way I've tried to become more actively shabbat observant is by singing zemirot, shabbat songs, at our shabbat meals and by learning/talking more about the parsha. That's the weekly portion of the Hebrew bible, the Torah (aka "The Old Testament" -- a term I find objectionable because obviously it connotes that it has been supplanted by a newer testament) that we read at our synagogue. At the meal I'm writing about, we had a nice discussion about the parsha, and a meaningful broader discussion about the challenges and rewards of more actively observing shabbat, especially for busy professionals who are exhausted at the week's end and kinda eager to get through the ritual so they can crash or read.

All in all, it was a really special shabbat meal, and thinking about it makes me smile in the midst of what has been a challenging week due to an ethical conflict I'm navigating, and self-pity about my limitations caused by my Lyme Disease. Ironically, I ordered a pair of the warmest mittens I've ever worn from Ewe2you.com and they were delivered with an elaborate brochure, geared for Christian readers, urging them to more actively observe the sabbath. I think that the importance of a shabbat, whatever form it takes for you, is more relevant than ever in our fractured, multi-tasking, 24/7-connected world. Whatever your faith, I highly recommend it.

P.S. This post took me four days due to my disability -- now I see why!

Yamuna Body Rolling Is Amazing!

Sorry I've been silent lately; I've been super-busy, and due to the nerve damage from my Lyme Disease, I often don't have the physical ability to type after I go about my other, regular duties. By the way, most of the posts you read take me days to write, because I can't type for too long at a time. Anyway, I had a blog-worthy event happen on Tuesday that I wanted to share about. My brilliant acupuncturist, Michele Masset, is also a physical therapist and certified in a lot of other therapeutic techniques, including Yamuna Body Rolling (YBR). First, let me state what YBR is not: it is not the classes at the gym with people rolling around on Swiss balls or on foam rollers. YBR is the original small ball therapy using specially designed six- to ten-inch rubber balls to release muscular tension, improve flexibility, decompress the joints, increase range of motion, build core strength and help realign postural imbalances. This is a system for total body care that includes elements of rolfing, weight-bearing exercise, stretching, core strengthening, and neuromuscular reeducation. I think my experience Tuesday is testimony that YBR is a simple program with profound results.

The bottom, middle of my feet have been hurting badly lately. I'd seen my podiatrist, but like most of the time I leave a doctor's office, I felt like we were addressing the symptom, but not the cause. I was excited to see Michele, because she has so many different therapies she can draw from, and she has literally lived around the world learning best practices, and continues to take seminars around the world to further her education to better help her patients. Michele did a thorough physical therapy evaluation, and said it was no mystery why my feet were hurting: my arches are collapsed, which is making the muscles in my calves and butt work way overtime. The rest of the muscles in my legs are atonal, virtually floppy. This muscular/postural imbalance makes my knees turn inward, exacerbating the foot problems. Fortunately, she thinks YBR is perfect for this.

There are two main ways to do YBR on my legs. The first involves laying on my back on the floor with my rump bumping up against the couch, and my legs up on the couch. I put the YBR ball, which is inflatable to the desired pressure, under my calf just below the knee and slowly work my way down. Michele taught me how to apply pressure using the correct body rolling technique. The other method is to kneel, and put the ball on my calf and keep it there by applying pressure with the back of my thigh. Either way, it feels so good! I basically felt those muscles lengthen and unwind. We followed the YBR with stretching. One of the stretches we did has caused me excruciating pain in the past, but after rolling it didn't, because body rolling decompressed the muscles being stretched. We worked only on my left leg that day, so I could see the difference between it and my right one, and it was profound. Not only did my left leg feel open, longer, and more relaxed, it actually looked different -- my left knee was facing forward, correctly aligned, while my right one remained turned inward. It was such a dramatic and amazing thing, I had to call my husband and tell him about this after I left. For those of you wondering, of course I bought a ball so I could treat my right leg at home, and I've been using it!

The other part of my new regimen is to use the YBR Foot Wakers pictured at the top of this post. A few months ago, I took one of the monthly lunchtime YBR foot classes that Michele holds regularly. Instead of using regular YBR balls, you use the Wakers, which stay flat on the floor and are covered in little nubbins. Standing on these is intense, no doubt about it; my house guest tried and said, "I thought those would be cuddly and comfortable, but they hurt!" The intensity is necessary to open and relax those neglected and cramped bones, muscles, and connective tissues in your feet. Although they're intense, the Wakers are tolerable, and are made easier by the YBR technique's emphasis on relaxing into the balls while exhaling. Michele told me using my wakers every day will go a long way toward improving the underlying foot problems that are causing my imbalance and the resulting pain.

Although I bemoan the lack of holistic health care options in our area compared to the West Coast, I am so very grateful to live in a city with more holistic options than most places east of Oregon. Practitioners like Michele, and my massage therapist, Gail Messier (who also uses some alternative, very effective techniques), really make my life manageable by offering some tangible relief from pain.

If you're someone who has any ongoing physical problems, or if you just want to free muscular restriction caused by stress, improve bone density, and rebalance your body, I'd definitely encourage you to check out YBR. The Web site I linked to above has a directory of trained practitioners around the world. I just commented to my husband that this post sounds almost sales-like and gimmicky, but I really am that enthused about this. I promise it's my natural enthusiasm, not a paid endorsement!

Sex and the Sickly Girl

We were in the kitchen cooking and my mom, in a moment of tenderness, rested her hand on my shoulder. "Ouch!" I yelled, because touching me near my neck was excruciating, as a consequence of my late-stage Lyme Disease. "That amount of touch hurts you? How do you have sex?" she asked. I was mortified, but not surprised, that my mom went there.

I am not someone who has an abundance of libido to begin with, and it is hard to overstate how un-sexy illness makes you feel, between tubes hanging out of your arms and suffering from terrible pain. When the brain is caught in a pain feedback loop, it is not so interested in lovemaking. I think this must be a survival trait! This says nothing of the myriad medications I took/take which made/make me nauseous and sleepy. When I took hydrocodone (Vicodin) for pain relief, that caused its own sexual issue: making my body incapable of orgasm. It took me a while to catch on to this, but I finally brought myself to ask my neurologist if the drug and dysfunction were related. I'm proud to report that I was his first patient who ever mentioned it! That's me, a regular Nancy Drew. The doctor agreed with me that it made perfect sense since Vicodin is a major depressant -- it's hard to excite and depress the nervous system at the same time, right?

I think I have some image of what sexy means and that does not include someone with chronic health problems, so I have a hard time viewing myself as a sexual being. Obviously, sex is so corporeal, it's tough to feel sexual when your body is falling apart on you. Although sex is my greatest weakness in my marriage -- I think it will always be my Achilles heel -- it is also extremely important to me, which my therapist says puts me way ahead of the game. I know people who live in sexless marriages and seem ok with it, but I think it's corrosive. Even if my husband wasn't very sexual, it would still be important to me, because I think sex is an important part of a healthy marriage. It does encourage bonding, and I can't help but think the world would just be a happier place if people got off more. Look at Betty Dodson: she's 81 and looks like she's in her 60's, and she attributes it to a lifetime of orgasms. And who am I to second-guess Betty? Besides, it's nice to do something pleasurable for your body when it's hurting.

Poli-Ticks

When reading my Lyme Disease (LD) posts from this summer, I was struck by the paradigm shift that has occurred in me since that time. To frame this, I need to lay out the two competing theories about LD today:

A. LD is a limited infection, easily treatable once diagnosed. First-line treatment is a month of oral doxycycline, sometimes followed by a month of intravenous Rocephin for severe or persistent cases. This is the position laid out by the International Lyme and Associated Diseases Society.

B. LD and its coinfections can be persistent, sometimes active, sometimes hiding. This makes it more like herpes. Cases like this require long-term antibiotic therapy. People can be symptomatic for years. This is the position of Lyme-literate doctors, whom you can find through the Turn the Corner Foundation or your local LD association.

I used to be firmly (and smugly) ensconced in the first camp, but three years of suffering later, I find myself hesitatingly in the latter. Hesitatingly, because I used to fancy myself some champion of evidence-based medicine. That worked for me until the evidence-based medicine didn't.

One thing to know about LD and coinfections is that the diagnostic tools are pretty bad. Most insurance companies only contract with LabCorp or Quest Diagnostics, which means lab work processed by other labs won't be covered by your insurance. LabCorp and Quest removed two of the most common proteins that can identifying LD (outer surface proteins A and B; for an explanation of why read this) from their serological tests. Currently, IgeneX is the primary lab used by Lyme-literate physicians to test for LD.

Another thing complicating Lyme diagnosis and treatment is the elusiveness of Borrelia burdoferi, which often quickly leaves the blood stream to hide out in nerve or brain tissue, which is how one presents with the neurological symptoms that I have. Those include lovely punctuated white-matter lesions that appear on MRIs of my brain. These lesions, which are one symptom of very critical LD, are similar to ones seen on patients with multiple sclerosis, systemic lupus, or cerebrovascular disease.

So here I sit, three years after first presenting with symptoms -- or six years, depending on if you count my diagnosis with fibromyalgia, which in hindsight seems to be my first presentation of Lyme. I am living with a real-life example of persistent Lyme Disease, which a year ago I didn't believe existed. The conventional medical path hasn't worked for me, and I'm embarking on treatment with a Lyme-literate doctor. My choice to embrace this path basically came at a critical moment, surrounded by evidence of so many seemingly disparate health problems including arm pain, stiffness, and baffling gastrointestinal problems that could not be attributed to anything else. One clear moment was a conversation with my medical nutritionist who noted that I didn't display any gastrointestinal inflammation markers, which usually shoot up at the sign of anything amiss that is originating from that part of your body. I said, "That means this is coming from something else, right? It's a symptom, not the cause." The minute I said it, I knew it was true. Have you ever known something, intuitively, is true to your bones? Like nothing can shake you from that truth? I've had it a few times, and this was one of them. I have been tested for everything under the sun, and yet the total portrait of my symptoms points most clearly to persistent LD. This all led me to a search for someone who would treat my whole being to help me heal.

My first stop on this new journey was with a naturopath who prescribed mega-doses of antibiotics, which is the standard treatment for persistent LD and coinfections. Unfortunately, she did some things to compromise my trust in her, and I decided to search for another practitioner. I found him, and I had to actually sign a waiver agreeing to not blog about him by name. So let's just call him Dr. F, and if you have any need to see him, email me and I'll put you in touch. Dr. F agrees that I am suffering from persistent LD and coinfections. He gave me a few blessed days rest from the antibiotics that have made my arm pain symptoms and excessive fatigue so much worse; this lovely phenomenon is called a Herxheimer reaction (known colloquially as "die-off"), which occurs when large quantities of bacteria are dumped into the body and create a toxic effect. In this case, they were being purged by the antibiotics. Believe me, I was feeling it! Tomorrow I start on a different pulsed antibiotic regimen, which means instead of taking them all on the same day, I alternate days, so I'm not pounding my systems as badly. I'll take minacycline and azithromycin instead of doxycycline, Rifampin, and azithromycin. Dr. F's hope is that this will kill the bacteria without causing such a severe Herxheimer reaction.

In addition to my $600 consultation fee, I spent about $750 on laboratory tests as part of my initial visit to Dr. F, which excludes what I will pay LabCorp for things like running a thyroid panel and checking my vitamin D levels, which we don't need to pay a specialty lab to do. Add to this my massage therapy ($110), psychotherapy ($160), a visit with my physiatrist-pain management doctor ($?), and a dental cleaning plus pre-paying for my two $%@#$ fillings ($255), and it was a very expensive week in health care! Oh, and I spent $347 on antibiotics at CVS. I will be happy to reach my $2,400 in-network deductible, though that won't do much to help me pay for Dr. F, who does not participate with any insurance, and my out-of-network deductible is close to $7,000 anyway. I might actually meet it this year, sadly. I am very, very grateful that we have the financial security to pay for this stuff.

My depression in November and December was really bad, but fortunately I've gotten that under control. Let's face it: being debilitated for three years can be pretty depressing! I had several well-meaning friends urge me to get back on antidepressants, but I wasn't interested in doing so as long as I stayed functional. Luckily, I've dodged that issue for the moment, thank God, by focusing on thoughts that help me keep my spirits up. The key seems to be staying in the moment, or at least the day. My mood heads south when I think of longer-term issues like, "When will I be healed?" When I focus on having the very best quality of life I can have today, I find my mood much more manageable. Meditation helps me put this into practice. Exercise definitely boosts my mood, so I should do that again, soon! It's tough when I have so much to do and so little energy; I really have to carefully mete it out.

I told my friend, S, that I felt like I had learned all the lessons my illness held for me, and now there were no more lessons, but I still suffer. She gently pointed out that maybe acceptance is now the lesson I have to learn. I've come around to that point of view, and I feel like if I can gain even a little mastery of accepting things as they are at this moment, it could be a watershed thing. I think of the cascading effects that would have on my anxiety and other challenges.

"And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing, or situation -- some fact of my life -- unacceptable to me, and I can find no serenity until I accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing, happens in God's world by mistake ... Unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and my attitudes." -- Alcoholics Anonymous, p. 417

What Doesn't Kill Me Doesn't Kill Me

Whoever said "What doesn't kill you makes you stronger," was a moron and a liar. What doesn't kill you doesn't kill you.

My body is so run down from antibiotics and antifungals, my arm pain is flaring badly, so it's hard for me to type. I'll resume blogging when I'm able.

Merry Christmas, if you celebrate the holiday!

Sectionals

I'm still gushing over the Glee mid-season finale, and the season overall until now (for ease, this will hereafter be called "season", even though I know it's not a full season). Glee is on hiatus until the spring, when the back nine episodes will air. They were renewed for season two, which will start in fall 2010.

The first part of this season was a lot lighter than the end, but I really enjoyed the heightened drama. Of course I couldn't wait for Terry Schuester's pregnancy to be exposed as fraudulent. I fully expected Will Schuester to flip, but I was pleasantly surprised by the intensity of his reaction -- he was physically violent. This was very out of character for him, but because the reaction was appropriate, and Matthew Morrison played it so well, I found it powerful and believable.

The writers have done such a good job building up Emma and Will's attraction, I knew they weren't going to let her go and marry Ken, but I didn't quite anticipate him dumping her (good for him, btw). I have been gunning for Will and Emma this whole series, so although it made me sad that she didn't let him sweep her off her feet at her would-be wedding, it was totally the right thing to do. Anything else would've been too cheesy and inappropriate. I LOVED Will & Emma's kiss at the end, especially as it was set to the performance of "My Life Would Suck Without You." I wished their kiss weren't so chaste, but I guess Fox didn't want Sectionals to become "Sexionals."Realistically, mysophobic Emma wasn't going to let Will put his tongue in her mouth first thing anyway.

I feel bad for Finn that Puck, his best friend, knocked his girlfriend up, but I'm glad Rachel exposed Quinn's lie. I eagerly hope that Finn & Rachel will get together later this season. I'm not getting the sense that Quinn's going to change her mind about letting Puck co-parent this baby with her, and I don't really blame her.

I'm enough of a dork that the fact that Glee has had three overlaps with my other favorite show, True Blood, truly excites me. Patrick Gallagher, Coach Ken Tanaka, was Chow on four episodes of TB. Kevin McHale, who plays Artie on Glee, was the assistant helping the coroner at the scene of Sookie's grandmother's murder on TB Season one. Later, in another episode, he was at Fangtasia and Sookie overheard his mind worrying that she would recognize him from the crime scene. Finally, Anna Camp, who played the pretty sectionals judge, Candace Dykstra, on Glee was Sarah Newlin on True Blood season two.

With Glee and TB off the air for the moment, what am I to do for mindless entertainment? First, I'm still enjoying Charlaine Harris' Sookie Stackhouse books that TB is based from. Luckily the Glee DVD for this season is out Dec. 29, and I'm re-watching TB Season 1. No news as to when TB Season 2 is coming out on DVD, but I look forward to it. TB Season 3 isn't planned until June 2010, but I'm thrilled HBO picked it up for a third season.

Update: I'm super-excited that Glee and TB got well-deserved Golden Globe nominations! I look forward to reading about them winning.

Ticked Off: Installment III of my Lyme Disease Journey

Things have been majorly sucking here lately. I am being treated for suspected Bartonella, a co-infection of Lyme Disease. One of the reasons that Lyme is so debilitating now, versus 15-20 years ago, is that most people who get infected with Lyme now also are infected with 1-8 other viral or bacterial co-infections. Your immune system can't easily fight off that many assaults, so it goes haywire, which is how you end up with a perpetually ill patient like me. Additionally, I've been diagnosed with intestinal candida (yeast); we're working on how to treat that since the fungicide the yeast is resistant to is severely contraindicated with another pharmaceutical that I take. I have been feeling very down, angry, and cynical. I'm totally pissed off that I'm 33 and have been knocked on my ass sick for so long. My husband (and several other people) gently suggested that I might be here to be of service to others. My response to this is basically, "Fuck service! I don't want to be of service in this way. This really fucking sucks, and I'm tired of it. Tell me my life isn't merely to be an example to others." I still feel that way most of the time, but I think it would be a real pity if someone suffering in the same way I've been didn't get a chance at healing just because I'd rather write about vampires than the rough stuff I'm living with. So, in the spirit of service, I'm getting back to telling my Lyme Disease journey. See Installments I and II if you missed them.

IV Rocephin=Good

When I reflect on how sick I was at the time my doctor diagnosed my Lyme just before Passover in spring 2007, it feels like a hazy, bad dream. I could not wash my hair, because I couldn't lift my hands above my chest level. I don't know what I would've done if I hadn't been married; I have no family here whom I would feel comfortable showering with. I could not chop a vegetable. I couldn't always sign my name; I certainly couldn't write any more than my name without excruciating pain. I could not type. I could not turn on my computer without feeling an electric shock traveling up my arm, nor could I push an elevator button for the same reason. I couldn't open the door to a commercial office building because I was too weak to do so. My arms burned deeply all the time, and I felt like I was being tortured. I had constant numbness and pins-and-needles feelings.

I almost wept with relief when I finally got a diagnosis. My disease had a name, and it was treatable! I wasn't really looking ahead to a time of wellness; I just dreamt of some pain relief. My doctor first prescribed a month's worth of oral doxycycline, a really common antibiotic that I used to take for acne. That plus acupuncture got rid of the worst of the pins-and-needles sensation, but nothing more. I knew that intravenous (IV) antibiotics were usually needed to treat Lyme as severe as mine, but I was shocked when I had to suggest it to my neurologist. He shrugged, "You want to try the IV? Sure." Typing that kinda takes my breath away; it's one of about 1,500 health care moments that I can identify that if I wasn't who I was, with the resources (including chutzpah) I have, I would have a very different life than I do now. I will do a whole post on this some other time; I had such a moment earlier this month trying to get information about when to stop my drug for my digestive study.

Anyway, eventually I'm sure I would've sought a second opinion that would've led me to a truly Lyme-literate doctor who would've prescribed IV antibiotics, but any delay would have been detrimental. In hindsight, I wonder if I needed more than just a month of IV meds.

I had to get a peripherally inserted mid-line catheter placed in the vein in the crook of my arm (see here for drawing). It was a thin, plastic tube that snaked way up my arm, came out of the vein and was covered by a thin piece of plastic to keep it sterile. I remember driving to Reston, VA to have it placed; the nursing company would come out to my house for other care, but told me in no uncertain terms that I would not want to clean up the mess in my home that would result from placing this line. The nurse was very skillful, but it hurt like hell; yet, at the time, I distinctly remember feeling exhilarated, thinking it might be "the trick" to get me well. Sitting here two-and-a-half years later, I can see how naive that was, but I'm grateful for that innocence because it would've crushed my spirit to not have it.

I had a home health nurse who came every week to change the dressing covering the midline insertion site and check for infection. She showed me how to sterilize the cap, flush the line with saline, and hook up the IV Rocephin that was shipped here weekly from the nursing company's pharmacy and that was stored in our refrigerator. I'd be lying if I said I didn't like having the midline or using the IV every day; medical stuff is cool. When else was I going to get the chance to give someone an IV? My friend Dionne, God bless her, knit me a little cuff to keep the long line from blowing in the breeze; I could tuck the plastic tube up into the cuff when I wasn't mainlining. That was good because any time that tubing got caught, it pulled painfully at the skin in my arm and I lived in fear that I was accidentally going to rip it out.

Four weeks of the IV Rocephin had a noticeable impact on me. The pins-and-needles and electric shock sensations subsided. A lot of the other details of when I saw improvements have escaped David and me; was I able to wash my hair again immediately post-IV, or later? Who knows. I couldn't write well enough to take notes, nor did I care to. I lived one day at a time, trying to find a way out of this pain. I was heavily sedated by narcotics, which took the edge off the pain and made me sleep.

There was a lot more to healing; I need to go to sleep but will remind myself here to write about: Cathy, physical therapy, cranial-sacral therapy, etc. Good night.