Wednesday, May 9, 2012

The Lemon and the Lyme

Ma'ikwe, Jibran (her 15-year-old son), Marqis (Jibran's father), and I traveled to the Chicago suburbs yesterday for the second visit to see Ma'ikwe's Lyme literate doctor. While her condition is not substantially different than it was at our first visit, back on March 20, both Annette (the doc) and I could see some good signs.

First, Ma'ikwe was able to raise her energy for the appointment. After a quiet six hours in the car to get there (which she was dreading) she was noticeably more up-tempo for the 60 minutes she had with her doctor. While I've seen Ma'ikwe raise her energy on demand before—as all good facilitators can—six weeks ago I don't think she could have done that. Thus, I observed at least a modest uptick in her resilience.

Second, she had introduced a new protocol about two weeks ago: working with a Rife machine, which emits electromagnetic waves in specific frequencies aimed to be disruptive (even lethal) for Lyme spirochetes and other tick-borne parasites (such as babesia). For the last fortnight she has done daily sessions of about 30-45 minutes where she is bathed in a series of frequencies targeting the bad guys. She typically conducts these sessions right before bed and the most notable immediate result is that her sleeping has improved dramatically. Since good sleep is an important component of healing, this is definitely hopeful.

Based on her progress with the Rife machine, and lack of demonstrable benefits from her other treatments—doxycycline (an antibiotic), raw garlic tincture, lauricidin (a coconut oil derivative), grapefruit seed extract, green clay, and lumbrokinase (an earthworm-based enzyme)—Annette advised that Ma'ikwe take a break from the first four listed above while continuing with the Rife machine, the clay (for detoxing), and a variety of dietary supplements. After another four weeks we'll see if there's any more improvement. 

Ma'ikwe is happy to comply. In addition to possible stomach irritation caused by the garlic, Ma'ikwe is uneasy about taking antibiotics for weeks on end and doxycycline carries with it the side effect of making her hypersensitive to sunlight (and it's hard staying indoors now that the weather is so nice).

For all of that though, Ma'ikwe remains sick. She still has good days and bad days; she still has almost constant muscle and joint ache; she still has significantly diminished energy and stamina. So she's not nearly out of the woods yet. While her night sweats and hot flashes have decreased, her emotional irritability and mood swings are ascendant.

Last night, despite an immediate bounce from digesting Annette's cautious optimism, she was exhausted by the long day and even a hot bath was not enough to soothe her aching body. Awake late, she starting fretting about how hard it is to ask others to support her when there's no clear sense of how long it will take her to recover, or when she'll have the energy to pay back the kindness that others extend to her. How long will she be down?

While I did what I could to reassure her that together we'll get through this challenge, she reported this morning that her anxiety persisted after I went to sleep, and she was borderline nauseous the whole ride home today. Yuck.

These days, one of the mainstays of Ma'ikwe's emotional support—in addition to family—is a Facebook group dedicated to people who suffer from chronic Lyme disease. (I reckon these days you can find anything online: from left-handed French horn players to one-legged bocce balls jugglers.) For the most part this has been a godsend. Whenever Ma'ikwe experiences a new symptom—no matter how weird—she can immediately go online and post a note about it to her support group. Virtually any time day or night she'll get 10 responses within 15 minutes. It's amazing! (Both that there are always that many people available to read her postings; and that they actually have relevant stories to share.) 

Ma'ikwe's Facebook support group has been a decided help in helping her to stay grounded and to not feel so isolated in her healing journey. Whenever she's having a bad day, the support group reminds her that others have it worse, and that some have succeeded in going through her same symptoms and coming out the other side. Her misery has definitely been ameliorated by having company.

That said, it's also true that the Facebook support group skews things toward the stories of people who are not getting better; toward the folks whose energy is only sufficient to type (or to type cast). Those who are recovered—or well along the way—tend to move on with their lives and leave the chat room behind. [For more on the complexities of my wife's reliance on Facebook, see my blog About Face from March 12, 2012.]

Two weeks ago, the dark side of the support group was partially illuminated when Ma'ikwe innocently asked what toll chronic Lyme played on partnerships. In reply, someone stated that this tends to fall into one of three categories:

Category 1) Relationships tend to survive when both partners have chronic Lyme. They can support one another and have deep empathy for what each is experiencing. 

Category 2) Relationships tend to do OK when they're started after the chronic Lyme has manifested, so that both parties have a fair idea about what they're getting into. (Think Florence Nightengale.)

Category 3) If not in categories 1 or 2, relationships tend to fail.  

That particular sharing did not improve Ma'ikwe's mood, and led to a tender conversation with me in bed one morning. (Don't miss the importance of Ma'ikwe's being willing to discuss this with me—that was a good thing.) Naturally, Ma'ikwe is concerned about the lopsidedness of our relationship while she battles Lyme disease:

A.  Financial support 
She's too sick to do much right now to earn money, so I need to be the bread winner for both of us.

B.  Work together 

We are both deeply involved with the Fellowship for Intentional Community and we enjoy working together as process consultants. However, Ma'ikwe has been so sick that she canceled coming on the last two trips. This is a double whammy: not only does that mean I lose her input on the work; I also lose our time together.

C.  Low libido

As Doctor Annette explained, when your immune system is compromised, your sex drive is one of the first things to be parked (as the body deems it nonessential relative to other hormone functions). While touch and tenderness never go out of vogue, it means we're working with a more limited vocabulary in expressing our love right now.

D.  Irritability

Along with compromised stamina goes diminished resilience. Things that Ma'ikwe could tolerate with grace in the past, are now grating. Things that bothered her before, now bother her more. Knowing that this is happening helps, but only so far. She wants me around to be a help (see E below), yet not so much as to be irritating. This is a delicate dance.

E.  Extra domestic burden

Ma'ikwe and I maintain separate households: she at Dancing Rabbit; I at Sandhill. In consequence of her low energy, it's hard for her to keep up with normal domestic chores, such as cleaning, cooking, washing dishes, recycling, emptying the compost, etc. When I'm at DR, I try to do as much of these routine tasks as I can, to lighten her load.

F.  Visiting each other

It's much easier these days for me to go over to DR than it is for Ma'ikwe to travel to Sandhill. In consequence, there's a gross imbalance between the amount of time we spend at her house compared with the amount at mine, and I'm the one that mostly needs to sort out the logistics of the commute.

G.  The burden of imbalance
Ma'ikwe is fully aware of these imbalances and it weighs on her that things are so lopsided. Yet what can she do lacking the energy to turn things around? Pushing me away (to not further run up the "deficit") can't be the right answer. We need to keep talking, to keep cultivating our emotional garden, and to concentrate on her healing. Restoring balance will have to wait.

H.  The burden of initiation
Even the dynamics of discussing our dynamics work against us! Knowing that Ma'ikwe has a limited budget for engagement, I am circumspect about when I initiate "heavy" conversations. I tend to wait for her to indicate when she's chewing on something and has the juice to tackle it. Unfortunately, by taking this course I increase the chance that Ma'ikwe will find that irritating in and of itself and we may immediately find ourselves at D. Ufda.

• • •
These last few months, Ma'ikwe's had be extra careful about her diet, paying close attention to both what her body can handle and what is the right relationship of ingestion with the wide range of treatments she working with (some need to be take on an empty stomach; some need to be taken with food, but not dairy; some irritate the digestive tract if taken alone… it's complicated). 

About the only thing she's been able to tolerate well and has proven compatible with all treatments is lemon water, and we've taken to buying yellow citrus 8-12 at a time. Stepping back, it's amusing to reflect on my wife's steady reliance on lemon as a basic strategic element to contain the complications of Lyme. Can't you just hear Geoffrey Holder—The Un-cola Man—chuckling resonantly over the paradox?

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