Hospice Volunteer Training: Day Two

"Tears fall, but why am I crying? 
After all, I'm not afraid of dying. 
Don't I believe that there never is an end?" -- Iron Maiden, "Hallowed Be Thy Name"

Day two of hospice volunteer training covered the emotional and spiritual needs of the dying. I learned that only ten percent of us will die suddenly; the rest of us will have to deal with some protracted death. Hospice believes that this dying process can be a meaningful stage of one's life and endeavors to make it so. One of the biggest take-aways from my training is to get hospice involved early, so families can take advantage of all of the services they offer. If you wait until someone is "actively dying" (really nearing the end of life), they are not going to feel up to utilizing the chaplaincy, social work, and volunteer time that can make this journey a more pleasant one. For example, we had a panel of current hospice volunteers come speak to us. I was touched by a gentleman in his 70s who said, "I try to find the thing that the patient has lost and in some way bring it back to him." For example, one of his patients loved poker, but hadn't played in years. The volunteer started playing poker with him on his twice-weekly visits, and other men from the floor of the assisted living facility joined in! I was so moved by this man's dedication.

The hospice volunteer coordinators did an excellent job with this training, and provided us many relevant articles in our large binders. The section on the emotional needs of the dying was intense, but also informative. The most powerful article, to me, was written by a doctor who lost her six year-old, Liza, to cancer. It was a beautiful illustration of how hospice care could ease this girl's death for the patient and her family. The article goes into detail about how Liza wanted to die and how thoughtful hospice care enabled that . One of our training exercises was to brainstorm about our "ideal" deaths, inasmuch as there can be such a thing. None of us is getting out of here alive, and there is a 90 percent chance that you will not die suddenly, so it's worth putting time into thinking about this, and more importantly, sharing your preferences with your loved ones. Everyone agreed the first goal was to minimize pain. Beyond that, here are my wishes:

To die at home, in bed, surrounded by close family, my best friend, and my dog(s). I would like there to be candles lit, and I would not like music (not even my beloved Iron Maiden). I would like my sheets to be clean. I will definitely want some spiritual reconciliation near the end of my consciousness: saying the viduy (confession prayer) with a rabbi whom I like, and meeting with a meditation mentor or teacher.

Other people participating in the training said they wanted music, specifically Bruce Springsteen. Some people thought less about atmospherics and more about things like ensuring there would be no family drama during their deaths, and knowing that they will have helped their daughters plan their future weddings.

We talked a lot about how to conduct oneself on a visit, such as what to talk about and how to behave. We did role-playing where we acted out different scenarios, like a patient's brother asking you out (!) or having a patient ask, "Why is this happening to me?" Social workers talked extensively about preparing yourself mentally for entering a hospice patient's home and the importance of leaving your baggage out of the visit since they have enough problems. This is a good reminder for an over-sharer like me. They even recommended specific techniques to kind of clear yourself before you enter the home and enter into a mindful presence to be of maximum service on your visit. We also discussed the importance of self-care for volunteers since this is stressful work, and the importance of healthy boundaries. We were told many times to block caller ID on our phones when we call the patient or family and certainly not to bring any patients to our homes.

To try to cultivate empathy and drive home the hospice patient's experience, the trainer conducted an exercise in which we wrote the following on 16 sticky notes: your four most valuable possessions, the four most important people to you, the four roles you value most and the four activities you most enjoy. You then laid these stickies out in front of you, and the volunteer coordinator walked around and randomly took them away from you one by one and crumpled them up. The point was to drive home the reality that hospice patients lose all of those things. Many people were deeply moved by this exercise, and one volunteer even had nightmares about it and couldn't sleep last night. However, I found it a little cheesy. I kept thinking, "My role as a wife wouldn't go away if I were in hospice, nor would I lose my wedding ring if I were dying." As for losing the ability to perform activities I enjoy, because of my debility from my serious Lyme Disease infection, I did lose the ability to do nearly all of my favorite activities, and others that aren't favorites but are critical to independence, like driving. Even though this sticky note exercise did not resonate with me, I still appreciate its message that people dying are rapidly losing control of things they hold dear.

In addition to discussing emotional needs of the dying, the second focus of the day was on their spiritual needs. One of the two hospice chaplains came and explained his job to the volunteers. He was really cool, and explained that he takes a very broad view of spirituality, which he explains to patients. For that reason, he ends up visiting with many people whom do not think of themselves as religious. Most people feel connected to something bigger than themselves, even "just" being part of a community. To this rabbi, that connection is the essence of spirituality. The rabbi brought a lot of insight into how to speak to the dying. I thought it was interesting that he often ends up working with people who are already very involved in their church or synagogue, because their own clergy people are overextended or because their minister or rabbi said, "You should view me as a generalist, and the hospice chaplain as the death specialist. Work with him, too."

Last but not least, on day two of training, we got our mandatory tuberculosis test. Ouch! It was a very long and emotionally intense day, but I felt like it did a lot to get me prepared to be a hospice volunteer.

Didn't I See This Movie?

I had a surreal experience on Kol Nidre night (the night when Yom Kippur begins). A young woman came up to me at synagogue and said, "Do you remember me?" I had supervised her immersion in the mikvah, a ritual bath, immediately before her wedding because the attendant scheduled to be on duty didn't show up. The night was very memorable for me because I had to be at the surgical center very early next morning to get a D&C for my third miscarriage; the last place I wanted to be was at the mikvah with a happy bride, but it was rainy and I didn't want her to wait any longer for the no-show. Anyway, it was this woman who approached me at synagogue. She told me how grateful she was that I showed up that night in general and all the more so, because she was pregnant. Now, in the movie version of this, I should have been, too: seriously, dragging myself out late at night in the middle of a tragedy to help this woman with a mitzvah (commandment) meant to help you conceive? It felt like the setup for some positive karma coming my way. Alas, the world doesn't work like the movies.

I think about my infertility more than I'd like to admit. I wish I didn't, but it's hard to not reflect when I see pregnant bellies at synagogue, or when I have a sweet interaction with a neighbor's kids. On Rosh Hashana I thought about our second baby, who was due then, and when someone told me her due date was Jan. 7, I thought of our third kid who was due Jan. 6. The one thing I can tell you is, infertility sucks. So much so that my friend who has cancer told me that he found infertility more challenging in many ways than cancer. His experience was that it was certainly more lonely. "People rally around you when you have cancer. That's not the case when you're experiencing infertility," he said.

One of the suckiest things about this is seeing myself turn into a person with behaviors I never, ever wanted to have, like avoiding pregnant friends. I think it is so petty and lame, yet find myself doing it anyway. I am trying to have compassion for myself around this, because I know my poor brain is trying valiantly to protect my wounded heart. I know this is a phase and it will pass. In the meantime, there is always Facebook.

Another eye-opener for me is how suffering related to infertility isn't related to how long you have been trying to conceive or how long you've wanted to be a parent. I was very late in wanting kids, then was thwarted by a very advanced case of Lyme Disease. It is hard to make love, let alone seriously contemplate parenthood, when every nerve in your body is on fire and you can't use your arms. For some (dumb) reason, I thought that would mean I would be less sad about our infertility, but that's not how it works. The heart wants what the heart wants, and furthermore, sometimes I have to encounter the second arrow of, "Well, if you had come to this sooner, things might be different." Feeling like there is a hole in your family is a lonely feeling, no matter how long you've been feeling it.

I am working hard to keep things in perspective, like by taking account of the tremendous blessings that I have, especially being happily married to my best friend. I cling steadfastly to the belief that you can be happy no matter your circumstances. I also do believe that everything will work out how its supposed to, whether or not I'm immediately happy with the results. Still, I can't help but feeling thwarted in doing God's will, as David eloquently wrote about, even as I have to concede that this may not be God's will for us. We'll see; it's definitely too early to make that call. David and I are definitely still in the game.

In the meantime, I continue to pray and take comfort in the struggles of the Jewish matriarchs, most of whom suffered infertility. I read Hannah's story in I Samuel and was moved to tears. I'm trying to use this fallow time as a time to work on myself and be of service to others. If you are the spiritual sort, please keep us in your thoughts and prayers.

True Refuges

"Your lost Joseph will return to Canaan, do not grieve
This house of sorrows will become a garden, do not grieve

Oh grieving heart, you will mend do not despair
This frenzied mind will return to calm, do not grieve

When the spring of life sets again in the meadows
A crown of flowers you will bear, singing bird, do not grieve

If these turning epochs do not move with our will today
The spheres of time are not constant, do not grieve

Don’t lose hope, for awareness cannot perceive the concealed
Behind the curtains hidden scenes play, do not grieve."  -- Hafez, "The Lost Joseph" (full poem here)


"I'm here without you baby, but you're still on my lonely mind
I think about you baby, and I dream about you all the time." - Three Doors Down, "Here Without You"



I don't know how much more I have to say about the horrors of miscarriage, except to say that they seem to get exponentially worse. With one miscarriage, it's like, "Well, this sucks, but 25 percent of all pregnancies end this way, so we'll grieve, hope and proceed forward." With two in a row, it's like, "Uh-oh, I hope this doesn't indicate a trend. Just bad luck." With three in a row, you become a "serial miscarrier" and the stakes change. Our most recent miscarriage is like a gigantic hole in my heart. It feels like more of a profound loss, in part because it's our third blow of this kind in a year, and I think in part because we felt some relief that we heard and saw our baby's heart beat. Even though I still worried, that gave me some hope that things could be ok. Nevertheless, it turns out our daughter had an extra thirteenth chromosome, which is incompatible with life. Knowing this was a little girl, and not an anonymous "it" makes this even more personal and painful.

One thing this year-long curriculum in grief has taught me is how much of a precious gift it would be for all of us to give each other the gift of mindful listening. In our culture, "help" has become synonymous with "fix": people see David and me hurting and want to relieve us of our suffering, so they make offers of "help" from the reasonable to the sublime to the ridiculous. The people who have been the greatest help to me have been those who say, "This sucks. You are in the middle of something awful and unfair, and I am so sorry for you." Bless you. One of the reasons that you don't say anything when you enter a Jewish house of mourning is that there is nothing to say. Loss is ineffable.

All of my old complaints about the hurtful things people say and do in their attempts to "help" still stand, though I have some new complaints too. The primary one is women offering me advice for their fertility problems, which are not our fertility problems. There are many stages where reproduction can fail, and I find myself exasperated with advice (again, well-meant) from people who have a totally different problem we do. They don't realize that their suggestions are equivalent to suggesting Lupron, a prostate cancer drug, for a breast cancer patient. But hey, they're both cancer! To all you progesterone pushers: all the hormones in the world would not have negated an extra chromosome, but that will be a later post. I am not immune to this desire to "help"; God help you if you ask me about Lyme Disease, because you will get an hour lecture full of strong opinions! Then again, in my defense, Lyme and co-infections have one cause, though many presentations of the diseases. Infertility is quite a bit more complex since it can have different causes, many causes, or be completely idiopathic.

I am all about care right now for David and me. Frankly, right now, other people's needs come significantly below ours. In trying to determine how to best care for myself, I keep asking myself, "What and who are true refuges for me?" This has guided how I am spending my time and who I am spending it with. No refuge for Sarah, no Sarah. This means a lot of calls to me are not being returned, and that's totally as it should be.

To my great surprise, one of my most helpful refuges has been meditation. It is surprising because my meditation cushion is kinda the loudest place in the house nowadays. You wake up to what is when you meditate, and if what you're waking up to sucks, it really hurts! I listened to a dharma talk today by Sylvia Boorstein titled "May I Meet This Moment Fully, May I Meet It As A Friend." I've been repeating that throughout the day. Some days, like this morning, I was able to compassionately touch my grief in my meditation; other days, it is too intense, and I return to the traditional metta (loving-kindness/blessing) practice.

Loving, compassionate, close friends and family members have also been a true refuge, as have both of my spiritual communities: my Jewish one and my meditation one. I found out last Wednesday that our baby died, yet I couldn't imagine being anywhere other than with my sangha (meditation community). I was hugged by so many people, and got kind follow-up emails from people sending me metta and checking on me.

Little Kacy, our dog, is a true refuge, as always. And on a different wavelength, good TV, in moderation, provides much-needed distraction. What are your true refuges?

Shared Sorrow, Shared Joy

"You have the pain, the sorrow, the fear within yourself; don't keep it for you alone. Allow the sangha, allow the community to embrace it for you. Allow the collective energy to help you to embrace it, because alone, you are not strong enough to embrace your pain, your sorrow ... If we allow the community to embrace us, then we will not sink into the ocean of suffering." -- Thich Nhat Hanh

May 17 was one of the most nerve-wracking days of my life. I was heading in for my third prenatal sonogram ever; the first two revealed that our embryos didn't take off, the cells never differentiating enough to create organs. I was expecting the worst at this one. My anxiety was palpable; I even sobbed in a public restroom the night before. I just needed an outlet for that anxiety to leave my body, and that night, it was in tears. I was looking for a way to process this anxiety, and one of my mindfulness teachers gave me a good suggestion: to tap into collective suffering as a way of making the container for my own suffering bigger. I think this is akin to Tara Brach's oft-quoted metaphor that if you are in touch with the whole ocean, you are less afraid of the waves.

So, I stopped looking at Wednesday's appointment as "my" ultrasound, and started thinking of all the women who have been on that same table I was going to be lying on. I broadened the thought to all the women having fertility issues everywhere, and more broadly, every expectant mom praying that everything would be ok with her sonogram. The exercise didn't stop there: I was able to relate my worry about the sonogram to all the suffering of the world, and I thought in particular about a dear friend of mine right now who is very sick. I can't explain why this helped ease my anxiety, but it did. It took me out of myself, and made me a part of something bigger, which, of course, I am.

Before David and I got out of the car to head up to the clinic, we prayed together, asking God for a favorable outcome to the sonogram, or the strength to get through this together if it was not a favorable outcome. I don't think anyone was more surprised than I was to hear our doctor say, "So, there's the baby, and you can see it's heart beating." Hearing that heart beat* was magical, though I could barely hear it through my tears of joy (and shock!)

The concept of sharing sorrow doesn't just exist in the narrow way I describe it above. It has helped me more than once to share my sorrows with all of the communities I'm blessed to be a part of. One of the starkest contrasts David and I noticed was the aftermath of my father's death vs. our first miscarriage a few weeks later. After my dad's death, there were about 70 people here a day to sit shiva with me. I found their presence comforting. We largely faced the miscarriage silent and alone, except for the few friends we notified. Several of them came to hang out and talk. Suffering of this magnitude is too big to be handled alone, and I am often saddened by the many women who tell me they have had serious fertility problems, miscarriages, and ectopic pregnancies and told no one other than their doctors. I am including women whom I know who are extremely close to their mothers, yet never tell their moms about these events. This kind of extreme secrecy only harms, in my opinion, never heals.

The concept of shared joy is as powerful as shared sorrow. In my immediate circumstance, experiencing my wider social circle's joy at our pregnancy is infectious and exciting. In a broader context, this is a skill I have had to work to cultivate over the past few years. My disability from Lyme Disease has meant the end to many professional and social opportunities that I used to enjoy. When you encounter that, your choice is to withdraw and become closed off and contracted, or to learn to cultivate joy from others' happiness. At times, it was very hard to hold this joy as most of my friends expanded their families as I was struggling with first having to delay childbearing because of my infections, and later, my inability to stay pregnant. Nevertheless, I have always found this goal worth pursuing to the best of my ability.

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* Seeing the six week-old on this sonogram was powerful for me in another context: seeing and hearing that little heart beating brought me back to when I used to volunteer for Planned Parenthood in what seems like another lifetime. They drilled into us in the clinic where I volunteered that what was being aborted was "just tissue." Seeing the heartbeat in my sonogram reinforced my unease with abortion, and also made me understand why pro-choice advocates are so upset by Christian pregnancy counseling centers using early ultrasound to influence women's decisions about their pregnancies. It also occurred to me, seeing that beating heart, that it was "just tissue" -- the same way my heart, my hands, and my brain are also "just tissue."

Health Care Chills

I just got health care chills, and as a veteran consumer of health care, I don't GET health care chills. Nothing was shocking, until today.

I am in Phoenix, AZ to go to my father's first appointment with his oncologist. He was recently diagnosed with multiple myeloma (MM), a cancer of the plasma cells. Plasma cells are blood cells that make antibodies called immunoglobulin. I am a firm believer that you need lots of people paying attention to health care matters. I take advocates with me to important appointments and think everyone else should too. If you disagree, maybe this will change your mind. Too many cooks can spoil the broth, but not enough cooks can also be devastating. The doc we saw today will not be my dad's main doctor, but he was who was available for us to have a consultation before my dad is scheduled to begin chemotherapy next week. Let me say from the outset that this is no slacker practice; it's definitely a top oncology practice in the area.

For this instance, I had read up on MM to brush up for this consultation, and had read from two excellent sources that if a patient uses certain chemotherapy drugs, it rules out the option of the patient getting a bone marrow or stem cell transplant later. One of my questions for the doc today was, "Is my dad a candidate for a marrow or stem cell transplant?" I got a very non-committal, "We'll figure that out later as we see how things go" kind of response. I told the doctor, "I read in the book your office gave us and on the Mayo Clinic Web site that use of certain drugs rules out this option. Are you planning to use one of those drugs?" The doctor looked at the chemo order and said, "You're right. We are planning to use that drug and it would rule out the transplant option. Clearly we need to figure this out before we begin treatment." The doctor said he would consult with my dad's oncologist and their practice head and get back to him. He added, "If that delays therapy a week or two, it's worth it." We said goodbye and my dad and his wife said that they were really grateful that I was there and had brought that up.

I went to the bathroom, shaking. It is the most dramatic example I have of the need for patients to be their own advocates. Gone are the days where you can assume that doctors have your back and all you need to do is listen and trust. Sorry, hon, you need to take a crash course and become a bit of a doctor yourself, or you can be totally screwed. It is harrowing to think that if I hadn't read the info I had and challenged the doctor on it, my father could have had one dose of a drug next week that would completely rule out his options for treatment forever. Doctors are too stretched to give every patient the best care they can; I happen to think it's an effect of our insurance-driven health care system: docs have to see 35-50 patients a day just to earn enough to pay their bills and draw a decent salary. No doctor can keep great tabs on that many people a day; it would be super-human.

Another dramatic example of the need to be your own advocate from my own health care saga, is that I had to ask my doctor for IV antibiotics for my Lyme Disease. I had read that people with my degree of infection rarely, if ever, get well from just oral antibiotics alone. My doctor was about to discharge me from his care with just four weeks of oral doxycycline therapy, when I said, "I've heard from many sources that people with neurological damage from Lyme need the IV antibiotics, too. Is that right?" He said, "Oh, you want to try that? Sure." I saw a dramatic improvement after the IV treatments; until I had them I could not wash my own hair because I couldn't lift my hands to my head. I had and still have a long road to go in my healing, but there's no way I'd be where I am without those four weeks of IV Rocephin.

I am superbly grateful that I have the wherewithal to be this kind of advocate for myself and my loved ones, and that I have people in my life, like my husband, who do the same for me. I shudder to think about the people who don't have the resources, intelligence, or communications skills to do the same. It's scary to think that your entire quality of life -- or your life itself -- can hinge on the extent to which you do so effectively.

Health Update

I had my follow up appointment with Dr. F and Gladys, my nurse practitioner and got some interesting lab results. I am still positive for Lyme Disease and Bartonella, one of the co-infection I'm presenting symptoms for. This wasn't surprising, but it was gratifying. We added the Rifampin back in, but at half the dose I took when the flaky naturopath prescribed it for me; the hope was that I wouldn't have the Herxheimer reactions I describe in this post. Unfortunately, I have. My symptoms are exhaustion and burning in my forearms. Additionally, my forearms feel like they're in a vice.

Dr. F is taking me off the Rifampin, and I'm trying Factive instead. If this doesn't work, I'm not sure what we'll do, but I'll cross that bridge if and when I come to it.

So, here's how my antibiotic regimen looks now:

Sundays: off

Mon./Wed./Fri: 300 mg Azithromycin

Tues./Thrs./Sat.: Minocycline

7 days of Factive (320 mg) followed by 7 days off

My energy is very low, and my mood is crummy: it's hard not to get sucked into self-pity when I'm this incapacitated. All I know is that we have to get this sorted out before Passover, because I can't cook for a seder if I'm in this condition. More later when I can type with less pain.

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

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.

Excuse Me, God, This Is Not The Life I Ordered!

You might be depressed if:

A. You cry whenever you hear REO Speedwagon's "Can't Fight This Feeling Anymore"
B. You watch the Pixar movie "Up" and tell your spouse "This makes me want to kill myself!" [not literally!!]
C. You've been chronically ill for nearly three years
D. All of the above

The answer is D. Thank you for all of your emails, phone calls, and text messages inquiring if I'm ok. People got concerned that the blog was quiet, and with good reason. Life lately has been very, very hard. I hadn't wanted to write about it, feeling like it drew me deeper into the depression that I'm fighting tooth and nail, but it's what's going on, so here we go:

I have not eaten a normal meal since Oct. 21, since I have been suffering from undiagnosed gastrointestinal (GI) problems. I have become a stalker at my GI doctor's office (I told him, "Hey, at least I'm nice and smart!" and he agreed), and have submitted myself to a battery of undignified diagnostic tests that mostly are coming up with no clear pathology. If you have never had persistent GI issues, you can't know that when that part of your body isn't feeling well, no part of your body can feel well. Of course, the GI tract is the massive engine that powers your body, and it's always working, so it's not like a sprained ankle that you can stay off of for a while. Even doing two days of bowel rest, which means drinking only clear liquids, calmed my system only a little bit. Until I had to eat again.

The depression that is nagging at me is a bigger threat than my GI problems, I think. I used to be a freakin' mess, to put it nicely, and at one point took 4-6 psychotropic drugs at the same time. It took me years of patience and determination to get off of them, and I have no desire to get back on them. If I have to, I will, but one day at a time, I've been giving my depression the middle finger and telling it it won't get me today. I've handled this by exercising, which hurts my tummy, but gives me yummy endorphins that stave off the depression. I've been very selective about my media, choosing light, fluffy, and funny over dark and depressing, which is part of the reason that the first half of "Up" threw me for a loop. I'm doing lots of service work for OA, which keeps me out of my head, and I'm doing my best not to isolate, though I'm not feeling social right now, to say the least. Prayer and meditation help, too.

The fact that it was December 2006 that I first started having serious pain leading up to my Lyme diagnosis certainly adds fuel to the fires of depression that I'm fighting. More on this later when I'm not giddy with the fact that David, unbidden, sought out and got me vampire erotica from the library. Could I be married to someone more attuned to me? I don't think so. I'm also giddy with the fact that I just watched and enjoyed "Twilight" in preparation for seeing "New Moon" on Sunday. I recognized the Stephenie Meyer cameo in the diner this time, and enjoyed the film a lot more since I didn't watch it immediately after reading the novel.

Back to brooding: In spite of everything crummy going on, I do sense the hand of God somewhere in all this. I have felt led to schedule a consultation with an integrative medicine clinic. This is a medical practice I've previously dismissed as being too expensive and too fringe-y for me to have an interest in it, but three years later, I'm willing. I have a friend who had great results working with them. I've surrendered myself to the several thousand dollars of debt that we'll accumulate if I decide to seek treatment with them, which I believe that I will. At this point I think they'd have to advocate overt idol worship for me to run scared.

After two years of being out of touch, two weeks ago I ran into the aforementioned friend who was healed at this clinic, and she urged me to give them a second glance. I checked out their Web site again, and saw they had a free Webinar about Lyme Disease with a naturopathic practitioner, which I attended. I found it surprisingly informative and credible, and began to seriously pray and meditate (haha, I just typed "medicate" instead of "meditate." Is that my Freudian slip showing?) about whether to seek a consultation with the practice. The overwhelming message I got was to go for it, so that's what I'm doing. David is going with me, and is being amazingly supportive, even though this type of health care definitely falls farther out of his comfort zone than mine.

Something that piqued my interest in the Webinar was the discussion of Lyme Disease co-infections. One of the reasons that Lyme has been so much more debilitating over the past 10-15 years than ever before is that when someone is bitten by a Lyme-infected tick, they usually are also being co-infected with up to eight or nine other viruses and bacteria. The naturopath giving the presentation said that in over a decade of practice treating Lyme, she has only had two patients who were not co-infected. There is not a lot of medical literacy about the co-infections in mainstream medicine; I was lucky to have had a neurologist who even knew how to properly check for Lyme. I was never tested or treated for any of the likely co-infections, and one of the most predominant symptoms of those lingering co-infections is GI trouble. In light of the fact that we have no other clear ideas about why my tummy is so upset, this theory is intriguing, so I am embarking on a different path to see if we can clear this up.

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In related news, I'm pleased the Lyme-documentary "Under Our Skin" has made it to the next round of consideration for receiving an Academy Award for Best Documentary! I have a few beefs with this movie, but overall I support it because of the incredible job it does spreading Lyme literacy. At some point, I'll formally review the movie on my blog, but I recommend it. Check it out!

Ticked Off: Installment II of my Lyme Disease Journey

The Diagnosis Continues ...

In March 2003, my neurologist was open to anything being wrong with me. The MRI of my cervical spine didn't show any orthopedic problems, so my doctor zeroed in on other things known to have detrimental effects to the nervous system, including lupus, multiple sclerosis, syphilis, diabetes, etc., and Lyme Disease.

This is really, really important. If you ignore anything else I ever write (probably a good idea), you should commit this to memory: If you ever have a Lyme Disease test, insist that your doctor follow it up with a Western Blot test, which is an analytical technique designed to test for specific proteins in blood or tissue samples. This test will find things that the regular Lyme Disease titre will not catch, because the Lyme test has a 50% false negative rate. Think about that -- half of all people who are told they do not have Lyme Disease, really do, so it goes untreated. To put this in perspective, can you imagine a pregnancy test on the market with a 50% false negative rate? No one would stand for it.

You might think that doctors would automatically know to use the Western Blot test, but you'd be mistaken. Unless they are experienced in diagnosing and treating Lyme, most doctors don't know how unreliable the regular titre is. The Western Blot is what confirmed my Lyme diagnosis. Thank God my neurologist did his residency at Yale, near Lyme, Conn., so he was a pro.

When we got the result from the blot, pieces began to fall into place. As I foreshadowed in my first installment , I experienced neurological problems in 2004, after I was plagued with aches and exhaustion starting shortly after I bought my house in 2003. I was in so much pain, I essentially took two months off work to rehab. I was ultimately diagnosed with fibromyalgia when the Lyme Disease and other tests came up negative. This is purely conjecture, but my neurologist and I believe that the 2003-4 event probably was my initial infection with the Lyme bacteria. My doctor at the time did not understand the terrible handicap of the Lyme test; it is especially unreliable if you're newly infected, which I presumably was.

Lyme is a tricky bacteria. If you catch it quickly, a 30-day course of oral doxycycline -- an innocuous antibiotic commonly prescribed for acne and periodontal infection -- can nip it in the bud, and you might get a yeast infection, but be no more worse for the wear. If left to do its thing, however, Lyme takes its time invading your tissues, which is why it can wreak havoc on all of your systems including your neurological system and gastrointestinal tract. Have you ever heard about syphilis making people crazy? It's true that it can, and the bacterial species that carry Lyme are most closely related to the bacteria that carries syphilis. In fact, much of what researchers have learned about Lyme has been gleaned from syphilis research.

The mysterious pain and exhaustion I had experienced for three months apparently was the result of total systemic breakdown due to Lyme Disease that had gone untreated for years.

I have more to say, but no more time or energy to say it. So, good night until next time. I'm about to finish the last book in the Twilight series, and I have a post brewing on that, and I'll certainly have something to say after the finale of season 2 of True Blood. And a rant about manners/bad parenting. Good stuff!

Ticked Off: Installment I of my Lyme Disease Journey

My friends know that I have been severely incapacitated by Lyme's Disease since winter of 2006. Because I have several new readers, and I've never been able to write about my illness in-depth, I'm going to do a series of posts describing my experience of the past two and a half years, culminating in a post about why I abandoned my old blog when I was able to start writing again.

Onset and Pre-Diagnosis

In December 2006 my forearms started to hurt me during and after typing. Since I was working as a journalist, I assumed I had developed carpal tunnel syndrome, so I took a week's vacation from work that December, during which I kept my personal typing to a bare minimum. When discomfort persisted, I made an appointment with the head of arm and hand orthopedic medicine at a major medical center. After a cursory exam, the doctor concluded that I had some nerve irritation and prescribed occupational and physical therapy with a hand specialist.

By February 2007, I started getting pins-and-needles sensations in my arms, similar to the ones you get when your feet fall asleep. Not comfortable! By March, when I touched a button, such as pressing a button in an elevator, an electric shock would travel from my hand and into my upper arm. At my doctor's suggestion, I took two weeks off work in March and refrained from typing while I got a crash-course of occupational therapy (OT). In spite of the rest and the therapy, my pain worsened. I took various medications and had some fancy wrist braces made, but the pain persisted. and My occupational therapy got increasingly painful, and I began to doubt the competency of my occupational/physical therapist (OT/PT; these are not the same field, but she is dually licensed). I asked the orthopedist for a referral to a new PT, whom I saw in March 2007. She was just out of school, which perhaps made her humble enough to acknowledge that something was gravely wrong with me that she couldn't fix. She asked an OT colleague of hers, whom she held in high esteem, to evaluate me.

This OT took the time to do what the orthopedist should have done but didn't: she had me perform simple tasks to assess the neurological function of my body, such as holding my arm above my head and seeing how long it took for my hand to go numb. It's supposed to take minutes, and it took my hand about 8 seconds. "This is not an orthopedic problem," she said as she shook her head. "This is a neurological problem. A big one. And you need to see a neurologist tomorrow."

This is a good time to diverge for a minute and talk about the pitfalls of what traditional, Western medicine has become. I think there was a bygone time when people were looked at as whole human beings, with interconnected parts and systems working in harmony to function, heal, and thrive. I am not knowledgeable about the history of medicine, but somewhere, somehow, we lost our way. Medicine became more and more specialized, which means our bodies got broken down into more and more "distinct" parts; so much so that now the adjective "holistic" (whole-listic) usually refers to complementary medicine, when really all medicine should be whole-listic. So when I saw the orthopedist, he only thought of my arms in the orthopedic context and neglected to do a very basic exam that would have tipped him off that I was at the wrong specialist's office. This will probably be the kernel of another post, because it needs exploring further.

Back to the sickness. Unfortunately for my close friend, she had a traumatic brain injury and was able to refer me to a neurologist who could see me quickly. He's a jerk, but he's also a brilliant diagnostician, thank God. He began the diagnostic process with neurology's favorite toy, the electromyograph (EMG), which is a nerve conduction test. Unfortunately, I knew what I was in for because I had one of these in 2004 (remember this in a few paragraphs). The exam is comprised of two parts. In the first, the surface EMG, the technician takes a little wand and administers electric shocks to your body; the patient is hooked up to electrodes, and the EMG machine transmits and captures nerve conduction data. The shocks feels like someone is taking a rubber band and repeatedly smacking it, hard, on your skin. That's the good part.

The intramuscular part of the exam involves inserting the longest needles I've ever seen into your muscles. They have to be long to get deep in your tissue. It hurts when they're inserted, but the real torture begins when the test administrator tells you to flex your muscle with the needle in it. My doctor was doing this on all my cervical vertebrae, and I ordered him to stop before he finished because I couldn't take it anymore. I was sore for two days afterwards.

The EMG showed some significant nerve damage, so my doctor ordered a battery of laboratory tests, and sent me for an MRI of my cervical spine. At this time, because of the excruciating pain in my arms and neck, I could not: drive a car, chop vegetables, push a grocery cart, open a jar, turn on the computer, open the door to an office building, use my fingers to hit an elevator button, write, type, or wash my own hair because I couldn't lift my hands above my shoulders. David, bless his heart, washed my hair for two months. I was so tired that I slept all day, which I guess is good since I couldn't do anything other than watch TV. I couldn't read laying down because my arms weren't strong enough to hold anything in the air. Simultaneously, I was bedeviled by random pins-and-needles feelings and the sensation of my arms being electrocuted. It was torture.

The only thing worse than the pain was not knowing what was causing it.

Stay tuned for the next installment about my diagnosis and beginning treatment.

Groovin' in New Mexico

I've been working for months on a long, RIP piece for Courtney Love/Martha Stewart. But that's on my hard drive in D.C., and I'm in Corrales, N.M., and I feel the bug to write. Yesterday was a big, big day for me. David & I spent the morning horseback riding at the Tamaya Indian Reservation.

When I was a kid, I rode every Saturday morning, and even showed some horses. Then, I had to start preparing for my Bat Mitzvah, which meant going to synagogue instead of to the farm on weekends. Boo! (As an aside, when I told my mom the whole story of what I'm about to tell you, she said, "I should've let you keep riding instead.") Unfortunately, by the time I regained my interest in horses, that wasn't the only thing I had gained. My weight crept up and up, and I felt guilty for putting 200+ pounds on a horse. I knew theoretically they could carry a grown man with armor, but I wasn't in battle, and didn't feel like some poor horse had to suffer because I was eating two gallons of ice cream a week. When my weight got low enough to assuage my guilt, then my Lyme's Disease pain came, and I couldn't do anything physical, let alone ride a horse.

David and I had a beautiful 1.5 hour ride on the Indian reservation. We saw all kinds of flora and fauna, and rode by the Rio Grande and some other not-so-grande river. The weather was perfect. Best of all, I felt awesome on Reba, like I hadn't missed a beat in the 22 years since I'd been on a horse. I was able to mount and dismount without any of the tourist step amenities, and I held my cool when Reba spooked in response to David's horse spooking (he deserves a shout-out here; he had never ridden and he handled George's spook like a pro). I have to admit at that moment, I questioned my decision to decline a riding helmet. I thought to myself, "All you've been through, and all it takes is Reba tripping and you can fly from her and get a traumatic brain injury. Just what you need!" I'd be lying if I said I didn't then offer a sincere prayer to God to get me through this ride safely, in spite of my stupidity. You have to love the frontier spirit out here; I can't see a place in Maryland making riding helmets optional.

It's time to leave the serene ranch, and David has a conference call. He asked if he could take the call from the ranch and then drive back to his parents house. I was hungry and said I'd try to drive, and would pull over if the pain got too intense. Keep in mind that until a month ago, I hadn't driven at all in two years because of the pain and weakness in my upper body. A few weekends ago I drove two miles, followed by three the next weekend. Any more than that would've been too much. I looked at the odometer before we left Tamaya; when we turned on to Eileen & Bruce's street, I saw that I had driven 12 miles without pain, numbness or tingling. I was overcome with gratitude and emotion; we weren't sure I'd ever be able to drive more than a couple of miles. I started choking back sobs, with my confused husband trying to comfort me and participate in his business call. I waved him away, assuring him, through a tear-covered face, that I was indeed, really ok.

My arms hurt, and before I go, I want to just relate that we had a very relaxing Shabbat. Eileen's best friend, Terry, whom I adore, came over with her mom and sister. After sunset, David and I laid on the lawn and soaked in the beautiful stars. Oh, stars! When we got up from the lawn, we saw a very dramatic full moon coming up over the Sandia mountains. I tried to photograph it, but the shot looks ridiculous -- a black background with a white spot in the middle. Some things can't be photographed, at least not by the likes of me, the Anti-Photo person (think Anti-Christ ... Anti-Photo ... that didn't work either.) Good night!