Friday, August 29, 2014

Easier Pie: Hill Park Update #4

Easier Pie and More Of It
It's been about a year since we started seeing Dr Bouch at Hill Park Medical Center.  Both Hazel and I have seen some definite progress in that year.

No, we're not getting rid of our wheel chairs just yet, or signing up for Zumba, but we're getting noticeably better sleep and we're able to do a little bit more all the time.

For example, I'm writing this blog post after making home-made yogurt, potting three geraniums, playing with the cat, and giving a tarot reading, and I still plan to do some more cooking after this "rest." I even put on fresh clothes today and I showered just yesterday, after baking pies. A year ago, any one of those activities would have been enough for two or three days, and I wouldn't have called writing a blog post "resting."

The fact that our progress is gradual says to me that it's solid. It means to me that we're building better health, not just getting a temporary boost. That could be wrong, and on bad days I think there has been no progress at all.

But you know how bad days are. On bad days I am sure that devils are prodding me with pitchforks.

On a good or even an average day, it's clear that we've made progress. Crashes last a shorter time. Here I am blogging and baking, despite just having gone through a really difficult half-a-month.

Just over two weeks ago, Hazel had major oral surgery that had been put off for years. For months prior to the oral surgery her pain was so bad she had to take massive amounts of ibuprofen daily. We were worried that the post-op period would be brutal --- and it was, but only briefly brutal. That she can sit up at her desk for a large part of every day, less than two and a half weeks later, is amazing.

In the past, it took two weeks for Hazel to recover from just an easy doctor visit - to Hill Park, for example, where everything is easy on the highly-sensitive nerves: the lighting is soft, Dr Bouch speaks gently to her and he barely touches her. And afterwards she would be exhausted and unable to go out again for at least two weeks.

But now? Only one week after that hugely invasive and painful oral surgery, Hazel was able to go out again to see the oral surgeon for a follow-up visit. And then only days after that follow-up, Hazel was sitting up, at her computer, and able to go an entire 24 hours with no ibuprofen.

The removal of severely impacted teeth is of course going to mean less headache and tooth pain, but would not explain the speed of her bouncing back after any appointment, much less oral surgery. Her improved sleep, better energy and overall greater stamina since seeing Dr Bouch, go far to explain the speed of her recovery.

I'm hoping once all the pain and tenderness from surgery is gone, Hazel will be doing really well. Right now she's not doing much worse than I was two and a half weeks after I had my wisdom teeth out many years ago, and at that time I didn't have M.E.

As for me, like I said, I have these great days like today, when I can do far more than I expected, and then I have rough days still. Recent days were rough, from the effort of taking Hazel to those oral surgery appointments and caring for her while she needed a whole lot more care.

Stress and worry, more trips upstairs to bring her things, more midnight wakings, shorter sleep - that all wore me down and gave me some very crashy time during her recovery. And yet here I am already having a great day.

Not everything has been peachy since starting in at Hill Park. I don't want to paint too optimistic a picture and give any other patients false expectations for recovery. There have been bumps in the road. I had some unpleasant side effects from one promising prescription and had to cut back. Then I lost some of the gains I had made.

But all in all, I am doing so much better, I've enthusiastically recommended Hill Park to friends, and two have taken that recommendation and thus far also been pleased.

It isn't cheap and they don't take insurance. And the tests and treatments prescribed aren't always covered by insurance, either. My improvement might have been greater or more rapid if I'd been able to afford more frequent follow-up visits and some remedies that insurance didn't cover.

That said, Doc Bouch and staff have been really understanding of our financial situation and have found work-arounds to get the most important tests run and prescriptions covered within our budget.

All of that might be no more than one ought to be able to expect from any real ME - Fibro - Lyme specialist. But beyond all that, Hill Park staff attend important conferences on these diseases, share info on the latest studies not only with each other and outside their practice but with patients as well, and raise awareness in the community. These people are really devoted to caring for the victims of diseases that can be as frustrating and wearing on doctors as they are on patients.

In sum, the last year hasn't been easy as pie but it has been easier pie, tastier pie, more pie than we had for a long time. Our results after one year definitely encourage me to raise, save and spend the money it will take to keep seeing Dr Bouch. When I think how hard life was a year ago, and compare it to this past month, our improvement in health is beyond price.

Thursday, July 17, 2014

Sex and the Cannabis Cooperative

Sex and drugs? Some drugs, such as alcohol, are not so great for sex. Not tonight, got a headache? Caffeine might help clear up a migraine...or better still, cannabis. And best of all, cheap cannabis.

Chronic pain patients everywhere know the value of pleasure in fighting pain. About 6 months after my diagnosis - a couple of years into my illness with M.E. - I attended a 12-session pain management course. In one session fairly early into the series, the instructor explained the pain circuitry of our nervous system, and how we can at least temporarily block it, by various methods.

One great way is to reroute the circuitry around pain, via pleasure. So, the instructor asked, could we list some pleasures that might overcome pain for a while? The students came up with many -- chocolate, bubble baths, spending time in nature or with their grandchildren, a funny movie -- there was a long list, and still the instructor was fishing.

"There's something you haven't thought of...." We thought some more. "Chocolate?" we said again. "No...what about sex?"

What about sex? What about sex for the chronically ill, the housebound, the bedridden, the crippled? That's a whole blog topic in itself, and way beyond the scope of this post, which I want to keep short for two reasons: my hands aren't happy typing, and many of my readers are sick and can't read long stuff.

So, Sex and the Cannabis Cooperative.

Sex: Yes, it is great for pain.

Cannabis: Yes ,it is great for pain and for sex.

Cannabis Cooperative: Comfort to the People.

I was already thinking of blogging about the coop, when a friend shared an article about Foria, a cannabis lube promising to give women 15 minutes of orgasm. Like Oz, this is great and terrible.

It's great because it will help get the word out about one more excellent property of cannabis. And nothing sells like sex, so I'm sure it will also hasten the day cannabis use is legal worldwide and not just for medicinal purposes.

It's terrible because they want $88 per ounce for this stuff, and it's only available to medical cannabis patients in California.

If you are able to obtain cannabis, and I hope you are lucky like me and can get it legally, you can make your own sex lube, also usable as a topical ointment for pain and also good to take internally for pain, insomnia, depression, anxiety, or any of the many symptoms treatable with cannabis. You can try my recipe for it or search for cannabis coconut oil recipe and you'll get over a hundred thousand results.

Or you can pay $88 an ounce.

At that price, I just whipped up over $5,500 worth last night.

And that's where they coop comes in. If you can't grow your own, hook up with a friendly family farmer. They may already have a coop or be open to starting one. Some farmers might prefer to sell only to dispensaries, but many farmers like mine might be open to -- and even greatly enjoy -- directly interacting with patients.

Patient contact helps my farmer know what's working for which ailments, and tailor his crops according to our needs. Working it as a coop allows him to keep his operation small, much of the work being done by patients so he doesn't have to hire labor. Some of us help directly with farm labor, on the farm. Some receive deliveries of harvested plants to be trimmed and weighed out into bags of buds. Some, like me, use trim -- the non-bud plant parts that contain medicine but aren't so good for vapourising or smoking -- to make medicines like this coconut oil (aka sex lube), tinctures, medicinal cookies, oil concentrates, etc.

So the benefit to patients, beyond getting farm-fresh organic cannabis, is reduced prices, and the satisfaction of knowing we're helping other patients. The half gallon of coconut oil I made last night, and the dozen one-ounce bottles of tincture I made a couple weeks ago, will help patients in 6 counties achieve pain relief, fight cancer, treat glaucoma and more. And yeah, that "more" includes, have good sex.

I can't blame the Foria people for trying to make some big bucks off cannabis lube, but it's not a new invention. Mary Magdalene probably used cannabis lubricant. And, well, capitalism sucks, as the recent ridiculous elevation of corporations to the status of personhood so clearly demonstrates. I suppose Foria is doing public service by tastefully publicizing the orgasmic power of cannabis. And those who have more money than time can pick up a convenient little one-ounce spray bottle at their dispensary. That's fine. But I thought I'd better remind everyone that it's easy to make your own.

And share it.

And spread the word.

Step by step, bringing prohibition to an end.

Of course I suppose there are some prudish politicians who will try to twist this publicity of the erotic value of cannabis into more Reefer Madness excuses to keep cannabis use illegal and protect the profits of the prison and pharmaceutical industries. Trembling with outrage they will point the finger at patients and say, "They're not really sick! They just want to have orgasms!" And alcohol and tobacco will remain legal because they never caused anyone to come.

This bizarre sort of nonsense can't last long.

Cannabis use WILL be legal.

Let's make lots of cooperatives and homemade medicine, so that even when it's legal it can be affordable.


Wednesday, April 30, 2014

Grim Realities Welcome

I hammer a metaphorical wooden stake into my nonexistent front lawn, and nail a little ether sign to it:

Grim realities welcome here.

Some folks insist that the only content appropriate for sharing via social media is the upbeat, the amusing or the inspirational. One friend apologized for mentioning her father's death on Facebook: "I know this is not the place for such things, but..." She's someone I only see online these days. I never would have known of her father's passing and her need for condolence. I was grateful she shared the info and told her so.

Social media are the new town well, the plaza, the cafe or bar, the back fence. They're filling in for places we used to pause a moment to talk, about everything. Sure we shared a lot of jokes and congratulatory pats on the back, but of course we shared our tears as well. Naturally we confessed our fears, bemoaned our frailties, and leaned on one another as needed. Just because we're now chatting via the internet and not in person doesn't mean our chats have to stop being personal. 

This is especially valuable for thus folks shut in by chronic illness who can't get out to an actual cafe for a chat with a friend. When we get together online we often want to just be silly and have fun, but not always, and it's those other times when our internet connections are most vital. The value of sharing grim realities was born out by a friend's recent statuses on Facebook. 

One day my fellow ME sufferer Lilan Patri said:

"Spring hurts most of all. It's the darkest time for me. In the winter, I feel like one among many, we Berliners, hibernating from the cold and wet and heavy. Indoors so much cozier than out. It's almost like I belong. Then the frost melts. The first green butts its head through brown. The sun is pale and new, but it's trying hard. The sky shines. Suddenly everyone is busting outdoors. Everyone is awakening, falling in love, jumping on bicycles. Smiling. Blackbirds with tangerine beaks. Dandelions in the garden. And I am inside. Too sick even to lie out there, to listen to the wind, to watch the clouds spin. The planet rolls forward. I watch you all go. And I can't follow."

On the following day she was able to post:
"All of you, from all walks of life, who liked or commented on or shared my post the other day--I wish I could thank you each by name. Just to see your thumbnail faces, to read your words, to hear that I spoke for others like me--I was drowning, you guys, I couldn't breathe for the loss and the fear, and somehow you pulled me back to dry land. I am so grateful. Thank you."

Thank you Lilan, and thanks toyour friends and mine, for being brave enough to be real. You pull me back to dry land and place my feet on solid ground, when I'm only staying alive by keeping my head in the ether.

(sorry about that weird formatting - dunno wha happund, can't brain how to fix)

Wednesday, January 8, 2014

Marked Improvement: Hill Park Update #3

I feel good, so good.
(It's like living in color after years of monochrome.)
"How do you mark your improvement?"

My first response was to tell her about the spreadsheets and graphs I used to make, in about the 6th to 18th months of my illness, trying to quantify three variables: energy, pain, sleep. The graphed lines had risen and fallen, and the drops in wellness they showed became predictable within a day or two after any effort. Had I continued graphing, their rises and falls would have followed a descending arc, down 6 years and more of increasing illness, until my better days were worse than the bad days of the beginning.

Now I'm seeing improvement, and my acupuncturist asks how I mark it. Were I still keeping those spreadsheets, I would see the graphed data make its predictable rises and falls along an up-curve. But quantifying wasn't what she meant.

She keeps a jar, she explained, and when something good happens she makes a note of it and puts it in the jar, to "mark" the event. Then at the end of the year she opens the jar and reads back over those high points.

That method would fit the data better than trying to quantify and graph my recent improvements, which I credit to finally seeing a specialist. Since I began seeing Dr Bouch at Hill Park I have not only had less pain, better energy and more restful sleep, but I've had changes unlooked for and unexpected, that wouldn't have fit into my old spreadsheet's parameters.

So, the notes that I drop in my jar won't be headed simply Pain, Sleep, Energy.

Within a few weeks, people who have known me since before my illness remarked on my visible improvement. There was a light in my eye and a spring in my step. I had my old walk back. Sometimes I still drag, sometimes I still have to stop completely, but once I went through an entire medium-sized grocery store on foot, and a couple of times, I took the stairs two at a time. I felt almost like the old me, with no ME.

I still have trouble processing sound over the telephone, and the worse the connection or equipment, the more physical pain it causes me, but this has let up enough from time to time to allow me to enjoy long conversations with my sisters and friends. I was missing those so much! And beyond that, I was able to enjoy long conversations in person with my daughter, visiting home during winter break from her university across the continent. Now I'm hoping I may be well enough to attend her graduation in a few years.

After years of being unable to write anything longer than a poem or brief blog post, and even then being unable to go back to read and edit any sooner than several days later, I found myself able to write more and longer pieces. I even completed NaNoWriMo, writing over 50,000 words of a novel in 30 days. I'm still unable to do the left-brained, intensively analytical writing and editing that I once did professionally, but I'm delighted to have writing back as a means of creative expression.

Even while I was writing that novel, my reading ability remained impaired. I still can't decipher a large block of unbroken text, and have a hard time comprehending what I read unless it's very entertaining, light and accessible. But some time in the month after writing a novel, the ability to read a novel returned. I can't read fast or long but I can read and enjoy again.

In the second year of my illness I went to a friend's studio and she guided me in Restorative Yoga poses. Then another friend bought me a book on restorative yoga to help me practice at home. But even doing those restful postures at home became difficult and rare. Recently, I bought a yoga mat and have begun doing more active yoga postures and even dance isolations at least three times a week, for anywhere from five to twenty minutes. It feels good to move again.

About a year and a half ago, I got a kitten. She has been a wonderful companion to me, learning to be content to follow me around the house, to sit for an hour or two on my desk while I sweat through paperwork, and to help me rest up afterwards by lying on top of me in bed, her warmth and weight a reminder to rest, just rest. But I felt sad for her that, though I had bought her toys, I didn't have much energy to play with her. Now I'm happy to report that my energy is high enough, now and then, that I can stay on my feet and toss her bouncy ball for her, making it ricochet delightfully down the hall for her to tackle and bat, and when it stops and she stares at it, willing it to move, I can make it move again, and repeat the game a few times. I feel a little warm glow, partly from exercise and partly from being able to give back a little to this generous cat.

Not far into my illness, I lost dreaming. It was a terrible loss for me. I had enjoyed a rich and pleasurable dream life, including occasional flying dreams and lucid dreams, and even my troubled dreams were fascinating, with huge casts of strange people. To no longer dream at all, or very rarely, was sad, and more than that it was an indicator of how poor my sleep was, and thus something I could mark on my spreadsheet. Recently, my dreams ramped back up, almost overnight, to the colourful, eventful, absorbing world they once had been. They seem even more vivid than ever, having been lost. I find myself remarking, in lucid moments, on the intensity of colour, the vividness, the motion.

I am not well, I have not even stopped being disabled by illness, but I find myself pausing in my days as in my nights and remarking on the changes.

Remarking, on marked and truly remarkable improvements. So good.

Thursday, January 2, 2014

A Doughboy in Bagdad

(A Doughboy in Baghdad was published back in '07 by Altar magazine. An editor took the liberty of altering something without alerting me, so here it is again with that 'correction' error corrected, and a sentence or two improved. I offer this reprise in honor of the supposed end of war in Iraq, and the news reports of lingering high rates of birth defects in Iraqis and illness among US veterans. My country, 'tis of thee.)

               Jason has a swimming pool in downtown Baghdad.  That caught my ear. I’ve heard about extended tours of duty, denied VA benefits, the closure of veterans’ hospitals.  I’ve heard about a lot of ways we fail to support our troops, from fabricating reports of WMDs, and serving up a plastic Thanksgiving turkey, to sending them shampoo but failing to provide water so they can use it.  So I wondered, how was it Jason had a swimming pool?

               Jason’s dad is mighty proud. At the airport he looked so good in uniform, six and a half feet tall and buff. His dad just cried, big tears rolling down his face. Jason’s aunt says he’s six two but no, his dad says, he looked seven feet tall.  In Los Angeles Jason bought ski gear then hit the Sierra snow. In San Francisco, he bought a wetsuit and a surfboard then spent the rest of his leave in the ocean.

               Jason’s dad is proud of the way he invested his pay. Jason bought penny stocks and did well. After his four years, Jason will get out with 40K in the bank, plus the 60K towards college. He’s fit. He’s smart. He’s solvent. He’s everything we admire.

               Meanwhile, with ten-hour workdays, a guy has to have some way to unwind. That’s why Jason has a swimming pool in downtown Baghdad. “But Iraqis are going without drinking water and electricity,” I could have interrupted, only then Jason’s dad would know I was eavesdropping, and I didn’t want to stop the flow of his talk.

               Jason is smart, and he knows how to work the system. Jason has a swimming pool full of cool, refreshing water. He has chlorine, liquor and pool boys. Pool boys? I wished I could ask about that. Iraqi pool boys, I suppose. While destroying infrastructure, the military brings so many jobs to locals: bartender, prostitute, pool boy.

               It would be nice if all our soldiers had such a cool way to unwind, but isn’t it a bit ironic?  A doughboy is an infantryman. The word should call up an image of hell in the trenches, in World War 1. But a "Doughboy" is a brand name swimming pool.

Of course, if we really supported our troops they wouldn’t need a pool in downtown Baghdad: they wouldn’t even be there fighting an unjustifiable war. Iraq today is no summer vacation. But Jason has it wired. Jason in his small way embodies the American wartime opportunism brought to large-scale perfection by Blackwater.

               Jason’s aunt says she happened to run into a young woman on leave from a tour of duty in Iraq, and this young woman knew Jason. “Oh yeah, Jason? He’s the one with the pool party!”  So I’m not revealing any state secrets here. Everyone knows that Jason has a swimming pool. But nobody knows why these people hate us. They hate our way of life, we’ve been told, and what we stand for.

(Yes, it was an actual overheard conversation. Welcome home, Jason. I wonder if you're still buff seven years later or if like some other veterans of that war you're pissing blood.)