Tuesday, September 17, 2013

Trivial Keys to Deep Truths: Gender Pronouns and More

This post has nothing to do with ME, or only peripherally. My transgender M-F daughter also has ME but this post is about that other medical situation: her being transgender, me supporting her as the young woman she is.

A friend wrote me not long ago sharing her “brother’s” blog post about being transgender, but her sibling, like my daughter, is Male-to-Female transgender, so a woman, her sister. And right there from the pronoun, we family members begin coming to terms with seeing our loved one in a new light. Here’s what I wrote back to my friend, pretty much:

Well, I know it's not easy because it involves rewiring your brain from a lifetime's assumptions about her, but first of all, it's your sister’s new blog post. And if she chooses a feminine first name you will have that to stumble over too. But we often have to adjust our definitions of people to fit new information and we manage.

The thing is, it is our definitions, not hers, that have to change. She wrote so clearly and beautifully, making it plain that she has always been who she is, so on the one hand you don't really have to change how you think of her as a personality—she is still the person you have always known, likes the same work, holds the same beliefs, will laugh at the same jokes that amused her in past and be drawn to the same books and movies. The only thing about her that has changed is that she has decided to stop being afraid of sharing and declaring her gender identity - and sadly she will be having to defend it too.

So what has to change in her family and friends? We have to accept and defend her, and show her those things. But she is clearly a person who understands the deep and subtle nuances of communication in our society. So you should start from where I would have told you to start anyhow, and that's deep within you.

My transgender daughter is like your transgender sister in that she too is not interested in most of the outer trappings of typical womanhood in our society. My daughter doesn't wear makeup or fuss with her hair and clothing much. She is taking hormones and is pleased with the changes in her shape, but the real essence of being a woman is much deeper. I am a woman who rarely wears makeup, I don't fit a lot of stereotypes about women in our culture, and yet I have the privilege of the body I was born with, which communicates to others to treat me as they treat women (whether the way they treat women is something I like, or not—and sexism, like homophobia, is something that takes on whole new nuances for transgender lesbians like my daughter and your sister).

But the point is about those deep understandings. Your sister’s family and friends can come to grips and show support by taking in the truth of her gender on a deep level. It's not easy but fortunately the use of superficial keys will help open the doors for those deep explorations. Pronouns and other gendered referents for example: practice using her and she, sister and woman, in referring to your sibling, and as you use those superficial words, take them into your own deeper thought structure. Think of her femininity. Recognize her as the woman she is.

This superficial thing, this language, is wired into our understanding so deeply. Words have power. The more you refer to your sister as she, the more you will know her as your sister and a woman. Sure, you will also have to ponder: you will spend time reviewing your whole shared life history in your mind. You will come to realisations, like the realisation that you as her cysgender sister may have inspired envy which she couldn't express, as you developed an obviously female body and were accepted into the society of women while she did not and was not. And the realisation that as a woman she may use the women's restroom, should use the women's restroom, but won't ever be asking another woman for a tampon. You will grapple with that. If she doesn't have to pass through our blood rites, is she still a woman? Ah yes—there are many women who for one reason or another don't bleed and yet we all know they are women... and so on, and so on, you will review and revise all of your assumptions, and being a sensitive and deep person yourself, you will successfully change your brain, change on the deep level, which she, also a sensitive and deep woman, will pick up on.

But those superficial keys are useful in the process. You will grow gradually so accustomed to saying that SHE is your SISTER and you support HER as the WOMAN who SHE has always been, that if for some stupid societal reason (it comes up for us in paperwork and bureaucracies all the time since my daughter hasn't yet changed her official legal gender status) you find yourself forced to say, "brother," "him," "he," and "his," you will feel intensely those quote marks. You will feel deeply wrong using the masculine terms for her. As wrong as if you used them in reference to yourself or your mother.

Defending her is partly a matter of gently but firmly insisting to others that they too use the appropriate, feminine, referents. You learn a lot about people when you do this. You will be surprised sometimes by which people are supportive and which are resistant. You may have to go through some difficult educational conversations with some, and you may have to drop it for the time being with others, but your consistent efforts to convey the truth, and the normalcy and legitimacy of that truth, to others, will also help you make the deep changes you need to make. Every time you speak out, stand up for her and defend her, you will own it just a little more deeply.

In the cases of women and girls who are more girly than your sister and my daughter and myself, fellow women can use some other superficial keys to open those deep doors: we cysgender women can take our transgender sisters shopping the way we would shop with any of the girls and try on clothes and makeup together, or watch a chick flick at home while doing our nails. In our cases, there are other little things, like choosing the birthday card "For my Dear Sister," instead of "Brother." At first it might feel like pretending, but it will become natural. And some day you will have a new deep realisation: all those other things, those things that had you calling her a boy and a man? THOSE were pretenses.

The degree to which you can and should talk with her about the whole process depends on so many other things in her personality and yours and your relationship, but I would suggest that you try. When you hit the awkward and uncomfortable moments, make the effort to open up and discuss, learn and teach. You can't know what it is like to be transgender and she can't know what it is like for you to accept, but conscious examination is our human way and sharing it helps.

My friend, I can say I sympathise with you and I do, for the small things, the faux pas that will surely happen, the many times you'll have to tug your foot out of your mouth and the times you'll have to try to tug other people's feet out of theirs, but on the deep level I am so happy for you. Your sister has given you a great gift of honesty and trust, which will bring you as siblings, as two women, as two people, to a closer and deeper relationship, based on truth.

Thanks so much for asking me this question. I didn't realise I had so much to say!

hugs and congratulations,

Wednesday, September 4, 2013

Hill Park Visit #1: A Shift

With high hopes and deep trepidation in equal measure, I went to see a specialist at last. Two weeks later I've finally got a little energy and mental clarity I can use to blog it up, and I would love to think this energy (though fueled by steroids as I'll explain further on) might herald a shift after 6 years ill.

I will try to go into some detail here, both for the benefit of fellow patients who (if they can read the whole thing or get someone to read it to them) will want all possibly particulars, and for my own benefit. Until today much that we discussed was hazy to me and I was afraid my scrawled notes wouldn't be enough to remind me of all that was covered.

Dr Brian Bouch has been practicing integral medicine for about 30 years, working quite a lot with ME, GWI, Lyme and similar illnesses. He practices in Petaluma, CA at a clinic called Hill Park. I had not heard of him before -- Trepidation! But he came highly recommended by one of my acupuncturists -- Hopes! He was more accessible to me, in terms of both location and fees, than other specialists I'd considered seeing, so that fact tipped the scales in his favour and I made the appointment.

We had an appointment of about an hour and a quarter, plus I spent a little more time with staff who conducted one test and explained procedures for some lab tests. The time spent waiting was not unreasonable, and the doctor and his staff encouraged me to lie down as long as I needed when I was tired.

The fees for both the visit and some testing, maybe even some treatment, were provided by kind donations of family and friends. I wanted to make certain those funds went as far as possible. My daughter and I, both ill, live on fixed incomes that barely cover living expenses, so it was only through those donations that we could see a specialist. Specialists for our weird disease(s) do not accept payment via MediCal/Medicaid or indeed, often, any insurance.

I brought with me the ICC primer and while he saw me, Dr Bouch had his staff copy it for him. Though disappointed that he wasn't already familiar with the publication, I felt his receptivity was a good sign. I felt further reassured by the questions he asked and information he referred to, and the tests he ordered.

As a practitioner of integral medicine, he seems to have a foot firmly planted in each world: a confident conventional MD and an equally knowledgeable user of alternative modalities. He started me on herbal licorice root to raise blood pressure (something my acupuncturist had also suggested) but he also suggested we test for HHV6 and, depending on result, possibly go with fairly high doses of Valcyte. So I feel good knowing that we're seeing someone who will work with all the available tools regardless of which medicine bag they're kept in.

Despite unfamiliarity with that primer from the ICCME, Dr Bouch seems to be pretty up to date on the research. Regarding HHV6, he mentioned the work of Dr Montoya at Stanford, and the good outcomes many of his patients and research subjects have experienced with Valcyte. He also mentioned mycoplasma in Gulf War Illness, and the similarity of many of these neuroimmune diseases.

In addition to licorice and Valcyte, among possible treatments Dr Bouch threw into discussion (depending of course on test results) were 5HTP, L-Tryptophane, self-administered B-12 shots and the steroids I mentioned I'm on right now.

Steroids: what's that about? Well, interviewing and examining me, Dr Bouch determined that I have not got osteoarthritis as earlier diagnosed, or else I have only a mild case. (A look at my xrays will decide for sure.) But osteoarthritis or not, what's really causing the screaming pain in my hips, increasing over the last two years and more, is trochanteric bursitis with iliotibial band syndrome. My physical therapists and then my GP confirmed this in their reexaminations, and adjusted treatment accordingly, and today my GP shot some cortisone into the left trochaic bursa.

The effects are astonishing. So far, no relief of the bursitis pain -- indeed, it's a little worse, and that's as my GP said it might be: often worse before it gets better. What I am enjoying thus far are the side effects of energy, mental clarity and decreased generalized pain. I hope the inflammation in my bursa will diminish as a result of this treatment, but even if that doesn't work, I would love to get a shot like this every day.

Alas, that won't happen, but I do get another shot, in the other hip, next week. I will plan my day to include some pleasurable outing afterwards, I think, to take full advantage of the boost both from the steroid itself and from the local anesthetics admixed with the cortisone: lydocaine and m...something else that ends in a "caine." Anyway, as these locals weren't mixed with anything to keep them in the one injection spot, they went coursing happily through my bloodstream, filling me with this wonderful sense of wellbeing, while the cortisone itself is boosting my energy. Combined, they made me feel actually well, for a little while, aside from the familiar pain in my hips.

As to that pain, the insult of the injection (it hurt like a snakebite and a half) and the initial aggravating effect of the cortisone in my left hip have balanced out to be about equal again to the untreated pain in my right hip. So, so far, so good, and the temporary absence of my usual overall nerve and muscle pain is a more-than-fair tradeoff.

While my GP provides the cortisone that might prove the turning point for my hip sockets, the physical therapists I've been seeing at Cotati-Rohnert Park Physical Therapy, for presumed osteoarthritis, have also adjusted treatment according to the new diagnosis of trochanteric bursitis. Slightly altered exercises, herbal recommendations (for ginger and turmeric, both excellent anti-inflammatories) and even altered massage techniques, plus a new and better TENS unit, have all come out of this PT response.

So already I owe a great deal to Dr Bouch, who was the one to spot the correct diagnosis. He does seem to have a good eye for what Dr Byron Hyde points out in his wonderful little book, Missed Diagnoses, are so often the overlooked and treatable actual diseases or coinfections of ME patients.

So now, back to the appointment two weeks ago, with Dr Bouch. One of his staff did a modified test for POTS on me, but it came out inconclusive - a result which neither confirms no rules out POTS, though something like common syndrome within the complex picture of ME iscertainly indicated by my symptoms. The test was far less grueling than the infamous Tilt Table, but it did require me to stand in an uncomfortable lean against the wall, for fifteen minutes straight - a feat I would not have imagined could be so difficult.

Aside from looking at my B12 levels and other tests already performed on my GP's orders, Dr Bouch is having me get the following new tests:

Bone Density
Adrenal Saliva Cortisol Test
heavy metals test

We will eventually go for better Lyme testing than I've had so far, as well. Depending on test results, treatments my include, as mentioned, Valcyte, B-12 injections, 5HTP, L-Tryptophane, and the antibiotic treatments for Lyme. Another treatment we discussed, sadly expensive: if the heavy metals test shows high levels of mercury, Dr Bouch will be wanting me to get my amalgam fillings replaced.

After about an hour of interview and exam followed by even a minimalistic POTS test I was far more tired and confused than I realized, but the staff, well aware of ME patients' limitations, gave me all the time I wanted to lie down, drink a little tea, and rally my energy for the trip home. I thought I was ready to go before I was -- they must have noticed I wasn't looking 100% and did their best to encourage me to rest longer -- so I missed several points in the demonstration of how to use the test kits they provided. Staff were very helpful when I had to call back and email later with a wide range of questions on everything from which tests were highest priority, to how and where to get them done, and which of the discussed treatments we could begin before or without testing.

The tests themselves loomed as a formidable expense, two alone coming in at around $700, but with understanding of my financial constraints, Dr Bouch and his staff, and my GP and her staff, are working together to find and order insured alternatives for as many of the tests as possible. Once we have been through this process with my own tests and treatments, or at least had about a month of starting down that road, we may be able to estimate an amount for my daughter's similar tests and treatments. That will be a big help with further fundraising and yes, we are going to need to do quite a lot of fundraising to bankroll this entire process. There will be follow-up doctors' visits and tests to follow up and recheck other tests, and of course treatments, and it's only as we go along that we can learn which are and which are not going to be covered by MediCal.

I hope money won't completely stall this process. I'm looking into fundraising options and that is a third purpose of this blog post:
  1. share information about a clinic many of us ME patients hadn't heard of and relate the story of my treatment there; 
  2. organize and remember my notes and thoughts on my first visit; and 
  3. start putting the information of what it is we're trying to do and how, into a format that can become the basis of an appeal for further funds. 
All that is a ton of work, particularly for an ME patient who isn't going to be on steroids every day, so can usually manage to write no more than a whimsical bit of doggerel these days. I'm not going to be able to produce one of those highly-technical patient blogs, that throw around the clinical and research terms so laissez-faire, with a working knowledge of the actual levels of this and that we look for in the test results, but I may be able to rough out a picture of what Dr Bouch is doing and why. And I do have high hopes, currently strongly favoured over deep trepidation.

With a team that includes Dr Bouch himself and his excellent staff, my acupuncturists, my GP and her excellent staff, and the physical therapists, all friendly to both traditional and alternative modalities, I think that I - and my daughter too, when she's well enough to make it to her initial appointment - stand a good chance of improvement, at least, at last. But who knows what waits in test results... I will do my best to keep you, my friends and fellow patients, informed. We will find out if Hill Park merits a place on lists of ME-literate cinics. Already I'm feeling a shift, and I don't think it's only the seasons.