Tuesday, December 1, 2009

To volunteer for XMRV Research:

Edit: the WPI has been discredited. I do not advise donating, participating in their research or supporting them in any way unless they are able to repair their reputation. 26 Feb 2012

Here's the Whittemore Petereson Institute's online form. Fill it out if you'd like to volunteer to help out with their research on ME/CFS, Fibromyalgia and the XMRV virus.

https://www.wpinstitute.org/patient/volunteer_form.html

My son and I can't sign up to volunteer, yet, because the two kids and I haven't got a home. Everyone please keep a kind thought for us in the coming two weeks as I search for a house I can afford on my depleted income.

Saturday, October 17, 2009

More news is good news.

A flurry of press attention to ME/CFS has followed the news of a retroviral link. I hope for a cure, or at least a treatment, some relief, certainly more acceptance of the reality of the disease. If nothing else, the tremendous increase in coverage ought to lift the stigma.

A doctor who treats both says in this Q&A in the NY Times, that she would rather have HIV:
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Comparisons are odious but it's true that decades of research have relieved much of the suffering and stigma of those with HIV, while we with CFS still struggle against the insistance of the ignorant that it's "all in our heads."

Meanwhile, it seems we may be far more numerous. Among the facts that fly in this Science Friday interview on NPR, we learn that there may be ten times the number of infections with XMRV worldwide as with HIV:
http://www.npr.org/templates/story/story.php?storyId=113870280

Speaking of viruses, there may be some useful information here for those with ME/CFS and/or Fibromyalgia who are considering the H1N1 vaccination. For me and my kid it's too late. We were infected by H1N1 and had a nasty case of flu on top of the usual, and our doctors, despite the fact that we're part of a "high risk" group, refused to test, but the good news is, we survived. Get more answers or at least questions from this About.com article:
http://chronicfatigue.about.com/b/2009/09/30/swine-flu-sorting-out-confusing-information-with-fibromyalgia-chronic-fatigue-syndrome.htm

I hope to write some more actual writing, soon.

Wednesday, September 23, 2009

Fibromylagia Study: It's Not All In Our Minds, It's In Our Neurons

Every time I read a report of another medical study, like this article... http://in.reuters.com/article/health/idINTRE58L40T20090922 ...hope wells up and I scan, looking for news of a breakthrough in understanding the causes, and perhaps even finding a cure---hell, even a reliable treatment would be nice---for Fibromylagia or ME/Chronic Fatigue Syndrome. So far, no luck, but at least this one was a blind study, using controls, confirming identifiable neurological abnormalities common to fibromyalgia patients in far higher percentages than in the control group.

I'm linking it here, and I'll be bringing it to the attention of the doctor with the pain management group at Kaiser, because just three weeks ago yesterday, he told me there were no such studies that he knew of. This article doesn't change much, but it's a scrap I'll cherish. Now when I say that I've read that there are measurable neurological manifestations of this disease, I'll have this one more scrap of evidence.

Fibromyalgia victims, tell your doctors. Let's keep them up to date.

Sunday, September 20, 2009

Herbs for CFS/ME

I've just come across this list of possibly helpful herbs. Half of these, Hazel and I have already tried. If you have any experience with any of them, let me know. The full list of ten herbs is here: http://chronic-fatigue-syndrome.suite101.com/article.cfm/best_herbs_for_cfsme

The ones we spent months taking and saw no improvement from are: Astragalus, Eleuthero, Ginkgo Biloba, Ginseng, Rhodiola.

Always hoping for anything that might help.

CDC's Got Goals: 5-Year Strategic Plan

I don't know what it will mean for us sufferers from CFS and ME, but the CDC has published its draft 5-year Strategic Plan for us. If anyone is able to translate from the bureaucratic, let me know what it says. On surface at least, Goal III, Milestone 4 sounds good to me: "Move CFS into the mainstream of public health concerns."

Check it out here: http://www.cdc.gov/cfs/draft_5yr_research_plan.htm

Nortriptyline Machine

I'm off that stuff. Let's see how the machine runs sans Nortriptyline.

I waited and kept taking the med, hoping the NP would return my call, then went off it on my own, and finally got a hold of her by calling again and being transferred through a hospital in-house line. Turns out she had been on vacation and it took 3 days for her to catch up on her desk full of work and her meetings, but, "I got your message and it's on my list of call-backs." But, "yes," she said, "some patients experience the opposite of what the medication is supposed to do, and get more wakeful instead of drowsy." So there's a lesson or two: if the med is too weird, don't wait for the docs to call you back. Trust yourself, go off that weird med. And if the docs don't call back, keep calling them. Squeak, wheel; squeak!

I had hoped I was just going through an adjustment period and the sleep thing would even out. I was enjoying increased energy and decreased pain, but as night after night went by with 4 or 5 hours of sleep, I was less and less able to do anything productive with the energy. By day I knocked about doing scattered chores, wishing I could focus clearly on the more urgent needs piled in my paperwork inbox, and particularly on the search for housing. By night I tossed and turned, practiced every relaxation technique I could, and still lay awake with my wheels uselessly spinning. Spin, wheels; spin.

So I went off the Nortriptyline on my own initiative, after having taken it for one week. The NP wrote an Rx for Gabapentin which according to the Mayo "is sometimes helpful in reducing fibromyalgia symptoms," but its original purpose was to control seizures. Those seizure meds can be weird-and-a-half, so I'll do my research before I take it. I hope I can get enough clarity to read up on it soon. Engage, gears; engage.

After going off Nortriptyline I continued to have fragmented sleep for a few more nights, though this could have to do with my PMS, a really bad endometriosis flare-up, perhaps a touch of flu, Fibro/ME flare-up... who knows? I spent several days hitting 8's and 9's on the pain scale. Release the pressure in a steam whistle cadenza, up that scale: Do, re, mi, fa, so, la, ti, ouch.

Day 5 off Nortriptyline, and last night I got back to sleep enough times to patch together a fairly restful night. After a week with no sleep and no brains, and four days of extra pain, do I have some brain capacity available for tough tasks? I look at my in-box overflow. I think about my name on the NP's list of calls to return, and hope those other names on the list got their calls returned. I know how it is to return to work after a vacation or illness and have a pile of work waiting. And I know how it is to have only a couple of hours a day, at best, to catch up on things. Not only that. I know how it is for the sickdays to recur, recur over the course of two years, and the pile to keep piling. Always the overflowing in-box, and never caught up. All I can do, is a very little. Remember the advice of Dr. Hain. Do less, think less, eat less, poop less. Nortriptyline jacked up the pace without alleviating the inflammation. Rev up the engine without replacing the worn out gaskets and where you going to be? Side of the road.

If I'm able to pull back into traffic now, it will be in the slow lane. Pain Doc told me when he prescribed Nortriptyline, "The idea is, it will make you drowsy at night and give you more energy in the day. More energy in the day, you get more active, that gets you tired out, and you sleep at night." I'm sure it works that way for some people, but for me it was wasted fuel. No more Nortriptyline for this machine.

Sunday, September 13, 2009

Nortriptyline, Butterbur, Feverfew, oh my.

Old info below. Seriously, for better information go to: http://itsonlymeitsnotmymind.blogspot.com/2012/03/how-not-to-die-and-other-useful.html

Just a quick note about herbs and meds.

A few days ago I started taking Nortryptiline, prescribed by the doctor at the pain management clinic. The first night, I had a ton of trouble getting to sleep. Odd! The med was supposed to make me drowsy, but it was sending me beyond restless to hyper. I tossed and turned, feeling jangled and agitated. After a while I slept shallowly, then woke, slept and had agitated dreams, woke, slept.

I stuck with the medicine, thinking this might just be an initial effect that would wear off. It's been five days now. Still getting less sleep, and more restless sleep, than before. On the other hand, I've also had less pain and more energy during the day. Not pain free, not normal energy. A slight but noticeable improvement. Will the sleep thing settle down? Should I go up to double the dose the second week, as scheduled? I'll be calling the doctor tomorrow to ask.

Meanwhile, a couple of days after I started the Nortriptyline, my family doctor said it would be fine for me to take too the herbs and supplements that the pediatric neurologist prescribed for Hazel. So I'm taking Feverfew, Butterbur, B2 and Magnesium as well as D and Calcium Citrate. Maybe some of my improvement is due to those supplements. It would be nice if I could get off the tricyclic stuff and use just the herbs and vites. However, it's unlikely that these slower-acting measures would already be causing noticeable improvement. On the other hand, Hazel, who is taking the supplements but not the Nortriptyline, has been complaining less often of severe pain, has been able to write and do computer programming, and has had improved appetite.

For the benefit of other ME/CFS/Fibro sufferers: Your doctors might not be aware that we tend to have high sensitivity to medicines. Always start with the lowest possible dose. Tricyclic antidepressants have been known to help some ME/CFS/Fibro patients fight the pain and insomnia. If your doctor prescribes and you decide to try, just remember, you probably will not need or tolerate the higher doses that would be prescribed for depression patients.

Feverfew and Butterbur are herbs that have been tested---so well tested that even a Kaiser Permanente doctor is allowed to suggest them---and proven helpful for sufferers of migraine and chronic headache. The hope is that these will reduce inflammation associated with ME. Depending on the length of time you've been in chronic pain, it may take a couple of months or more for the effects to be noticeable, as your brain has to lay down some new neural pathways and let some old pain-route ones close. Or at least that's what the pediatric neurologist told us.

Hang in there. That's what we're doing. And hey, drop me a comment and let me know you're reading, as Hegge, a fellow ME fighter from Sweden, did.

Edited a couple years later to add: I got off the Nortriptyline after it became clear that I had "an atypical reaction" to it.  I think my reaction may have been typical for people who have ME and not depression. I won't be trying any more psych meds. I'll try to post soon about the things that have helped, the things that haven't, and what I might consider trying next. ~ Creek, 24 Feb 2012

E2A: I've written that promised update. Please check it out here. Thanks! ~ Creek, 12 March 2012

Wednesday, September 9, 2009

Chronic Pain Management Assessment

I had been looking forward to this for about 6 months. Finally, yesterday, I had my appointment with the Chronic Pain team. The physical therapist, psychologist, counselor and nurse all seem like caring and well informed people, so I've still got a lot of hope, but also a little disappointment.

For one thing, I had hoped that the members of the team would be familiar with and receptive to the Canadian and Australian descriptions of ME. Instead, I received another definition of the difference between Chronic Fatigue and Fibromyalgia. More than one doctor has stated to me authoritatively that they're pretty much the same thing, or that Chronic Fatigue can feature pains as well as exhaustion so it gets confused with Fibro. This pain management doc's take on it was that Chronic Fatigue does not involve any pain whatsoever and therefor, since I'm experiencing pain, it's Fibro. He tested the classic pressure points for Fibro and sure enough I felt pain in 11 out of the 18, which he said means it is Fibromyalgia. But what if I had felt pain in only 6 or 7? Then it would not be Fibromyalgia OR Chronic Fatigue. And what about the chest pain which is my most intense and recurring pain, but is not included in those pressure points?

I appreciate his stance that the name is not important: what's important is what it's doing to me. But he also said it's not important why it's doing it. We'll be treating the symptoms, it seems, with coping measures. That's very valuable in its way. But what if the research on ME is correct and there is indeed inflammation of the brain and hypotension causing all this pain? And what if Feverfew could indeed reduce that inflammation and perhaps increased salt would be advisable for the hypotension? I hope that the team will be open to discussing these things, but at the first visit it seemed not. They asked me if I understood what my diagnosis was and why I felt pain, and when I went to the physiological roots as I understand them, which do seem to me to explain my symptoms, I was cut off. Well, they had a lot to get through, and although we had three and a half hours to work with, there was no time to spare for in-depth discussion.

I do appreciate the focus on symptoms over disease names. The intention is a more holistic approach. The team is very much devoted to working with mind-body connections and supporting whole patients to relieve pain. But if there's an explanation why I can't climb stairs without pain and dizziness we could treat causes... if... but... if... Ah, it's all ifs and buts, so why not try their way, I reason. I'll give it a fair trial. This was only the first day. I have 11 weeks of group classes ahead.

They're starting me on the same med that didn't work for Hazel. I'm not Hazel, though. Maybe Nortriptyline will work for me. As in Hazel's case, it's being prescribed for sleep disturbances. First night on it, I'm having the worst insomnia I've had in weeks. I'll give it a fair trial, however, if only to show that I'm cooperative and open to pharmaceutical options. And I'm tired. I don't want to argue, I want to cooperate and receive support. But I'm also going to ask if herbs are an option for me.

It's not that I think all herbs are better than all pharmaceuticals. Ironically, the yucky feeling I'm having tonight reminds me of the herb Valerian, which doesn't help me sleep but just makes me feel woozy and dizzy.

We're all guinea pigs. As long as this condition is unexplained and incurable we sufferers are the lab animals testing the latest theories. They say Nortriptyline works for many sufferers of ME/CFS and Fibromyalgia. I'll keep you posted on my reactions to the drug.

I'd love to be going to the acupuncture clinic that helped me feel so well a little over a year ago. I'd love to be seen by a Chinese herbalist, or a really good homeopath. I'd love to explore any number of alternatives, but this pain management clinic is the alternative available to me at this time, free, and within reasonable travel distance. If the effort ends up being more exhausting than relieving, I can drop it. And I'd love for the Nortriptyline to work, after all.

Monday, September 7, 2009

Miracles: may they become commonplace.

It may not last, but wouldn't it be nice if the end of August turns out, in future retrospect, to have been a breakthrough point? Of course, last night's adventure, Dog Meets Skunk, could indicate a reversal. But let us not think of that at present. Let us remember the happy ending of August.

First miracle: I started seeing Dr. Tractor, whose PhD in psychology doesn't prevent her recognizing the physical and practical roots of psychological distress. Aware that I need to find immediate shelter for myself and two kids, that my county caseworker is out of the picture with her own long illness (may she be well soon) and that I was getting no assistance from any government or private agency whose mission it was to assist the homeless and disabled, Dr. Tractor rolled up her sleeves, or rolled out on her treads, and dug in. The first tangible result is that she snagged me an application for a disabled bus pass. Maybe not overwhelmingly difficult, but a solid practical help with something I hadn't been able to do, simple though it might seem. And that bus pass application is symbolic to me of something more: there's now someone in my life who is willing to make it her job to help me negotiate the piles of paperwork and tangles of agencies. Wise Dr. Tractor realizes that homelessness causes stress which exacerbates illness whereupon pain increases isolation and hence depression and disability. She's stepping in and helping break that cycle. Talk therapy is all very well, but I'm really appreciating less talk and more action.

Second miracle: Butterfly's generosity. She's a joy just to talk to: a slight and sweet-spoken elder with her white hair in a wispy bun, fairytale style, atop her head, and her knowledge of every native moth and butterfly and their food plants, and those plants' neighbors, and her caring worldview extending to farthest wars and closest local action. She'll almost always only get gas at one station though it's miles away, waiting to gas up until she's heading that direction, because she supports their efforts to minimize the environmental impacts of petrol pumping. That's the sort of committed person she is. She rescues caterpillars from unstable environments and brings them home to her garden full of native plants, to metamorphose there in safety, then releases them in safe habitat. Her dashboard is covered with tokens of the names of people who have been unjustly disappeared in the war on terrism, lest they be forgotten. And her kindness extended to me. Butterfly loaned me her car so that Hazel and I could travel across the bay to Miracle Three.

Third miracle: the new pediatric neurologist, Dr. Unicorn, another doctor who really gets it. She's the first specialist I've taken Hazel to who had actually discussed her case with her primary care pediatrician prior to the appointment, and who made an appointment for a follow-up visit. That alone was encouraging. Besides that, she understood that Hazel had made a huge effort just to come to the city and be upright and talking. And more, she offered an herbal option.

We'd had a lot of hope for Nortriptyline when it was first prescribed by a headache specialist, but the first week's very slight improvement had been followed by the second week's violent illness in reaction to a miniscule increase of dosage. Hazel was throwing up, which is such a rare occurrence for her, I think she was a tiny kid when last she puked. We had taken Hazel back down to the first week's dose level and continued for 11 more weeks---a total 13 weeks on Nortriptyline---but there was no further improvement. Dr. Unicorn was astonished that the headache specialist hadn't suggested Feverfew and Butterbur.

Evidently Feverfew and Butterbur, with their lovely descriptive old English names, are both proven effective in countering headaches and inflammation. Hazel's continuous headaches won't be stopped by these herbs overnight. Two and a half years of illness have worn their paths in Hazel's brain. But gradually Feverfew and Butterbur can re-route the circuitry away from pain, and Dr. Unicorn believes that two months, perhaps three, may be enough to cause considerable difference.

Despite her fancifully magical name, this neurologist isn't all herbs and potions, however. She also prescribed Midrin for Hazel to try when next she has pain so acute and intense that she can't sleep or eat. It's good to know the big guns are there if we need to draw them, but it's even better to know that herbs capable of actually solving the root problem, without the panoply of side-effects associated with prescription options, are even now working... I picture them like a trail-mending crew in a park, blocking off the paths that lead to erosion and clearing better routes. Dr. Unicorn doesn't know of a specialist in Chronic Fatigue within the Kaiser system, but she said she will look into it, and I believe that if there are any, she'll find them.

Miracle Four: the car. For this I must thank the combined efforts of my sister Bliss and our mom, my nephew Bug, my younger child Holly, a wonderful volunteer from St. Vincent de Paul named Will, and an unknown auto donor. The unknown person donated a car to St. Vincent de Paul, which checked it out thoroughly, had all necessary repairs and maintenance done, put new tires on it and placed it in a lot with perhaps a dozen other such donated and rehabbed vehicles. There, Will met me, Bliss, Bug and Holly and waited while we checked out the vehicles and narrowed down to one prospect. Happily, the one car that passed Bug's mechanical inspection and fit our budget as well, also passed a test drive with flying colors and purring engine.

It was one of the hottest days of the year. I was terribly ill, and could barely see the cars, much less negotiate to purchase one. Holly sat in the shade with me and kept my spirits up while Bug completed further mechanical checks and Bliss handled the financial negotiations. With money donated by my mom, we bought Terwilliger Toyota at a very fair price slightly under Blue Book. Another hour, this time in air-conditioned comfort at the nearby offices of AAA, and the car was insured and registered. Bliss took care of all of this while Holly and I waited in comfy chairs, Bug and Holly helping out by running messages from Bliss to me and back when the helpful people at the window needed my driver's license and such. It was a long and exhausting afternoon for a person with ME, as well as for every person with me, but so productive.

I downed a lot of caffeine and analgesics to scrape myself up and prop myself in the driver's seat, but Holly and I made it home while Bug and Bliss went on to parts Southeast. And we made it home with Our Car. After a couple of months of having to beg rides (thank you Butterfly and Bette and everyone else who helped out with a lift here or there) and tote groceries on and off a rattling bus, it's a tremendous relief to have wheels again. I had been forced by lack of transportation to cancel so many medical appointments, doctor visits are now what early September is all about. Doctor visits and, as often as possible, Bette's wonderful gentle yoga classes. I'm so happy to be able to travel to those appointments.

Miracle Five: after the car purchase had drained all available resources, we were down to bare cupboards and no way to pay Flute back for fronting eight months of utilities, not to mention providing the temporary home where the utilities are hooked up. The strain on Flute's economy was placing a strain on a long and valued friendship. We have to find a permanent home and move the heck out of here, and Flute has given me until December 1st to do so, but I had no idea where I would get the money to pay at least a part of what we owe him, or how I would afford once again a moving truck and hired help. To solve this problem, Miracle Five came from Burning Mama.

She was important to me back in film school but we had lost touch. We found each other again via Facebook. She and her art had been to Burning Man, she had a transatlantic life with family here in the Bay Area and back in Europe, she had a little tyke of her own and still the energy to create, to kayak, to do the things I used to love. I was so happy for her and, of course, jealous, but not insanely jealous. I was delighted to be reconnected and hoped she would come for tea and talk when in the neighborhood for kayaking. Life is busy, tea didn't happen, but between travelings and projects Burning Mama took time to think of me. She read my writing and told me to keep it up, and coming from her that meant a lot, since she herself is a writer I greatly admire. I was so sorry to hear that she would be uprooting from the Bay Area and moving with her man and her boy to Europe, but before she left, surely needing all the resources she could muster to finance her relocation, she dropped me a line to offer me a loan. Pride made me put it off for a couple more months, but I caved in and kindly gave her the opportunity to indulge her generosity. No interest, no due date, just someday repay: the check arrived the day after every cent left my account to buy the car. And on I went to Miracle Six.

Miracle Six: yet another psychologist who Gets It! Those of you who read a previous installment entitled "Alas in Wonderland" will remember the culmination of the weirds, a psychological test for which the state paid oodles of money to learn that I am able to fold a piece of paper (an ability which I had never contested). Well, if it was hard on me to have to travel a couple of hours round trip to meet some newly-breeched psychologist who would smirkingly ask me inane questions, how much worse I expected it would be for poor Hazel who can barely get out of bed and stand up for five minutes.

The miracle is, Dr. Sam Hain, the psychologist with whom Hazel's evaluation was scheduled, turned out to be an experience, empathetic, understanding professional. Like Dr. Unicorn, he respected Hazel's huge effort to make it to the appointment. He has known chronic illness himself and truly understands what it is to pass years of youth in crippling pain. Dr. Hain managed to reach Hazel through her pain and exhaustion and not only encourage her to talk, but make her laugh out loud. The tests he ran were intriguing logic problems as well as some vocabulary and math: no paper folding. They actually revealed what sort of material was still easy for Hazel and what types of thought bring her up to a stand. That alone would have made our trip worthwhile.

More, Dr. Hain's approach completely acknowledged and validated Hazel's struggle with this enormous burden. None of the barking of "sit up straight, go for a walk, do some chores," with which other doctors have insulted this severely ill child. Dr. Hain discussed the physical processes, the brain inflammation and the blood pressure drops, that keep Hazel weak and in pain, as well as the psychological effects of over two years of living like a mushroom, as he put it, lying quietly in the dark.

Dr. Hain asked me what sort of kids were around us, for social contacts for Hazel---just a lot of future farmers roaring around on quads? Nobody who could share interests with an unconventional kid like Hazel? I rose to defend our area ---oh, he was good at baiting! --- and mentioned for example the kid among my acquaintance here who had recently completed a brilliant artistic achievement. And Hain snapped back at me sarcastically, "Great. So you want her to socialize with a bunch of overachievers?" What Hazel needed, Hain suggested, was friends who were also mushrooms.

This is no time to be type A, Dr. Hain reminded us. This is no time to push, to try, to do. This is the time to do less. "Think less, do less, eat less, breathe less, poop less." Such a gift: accept where we are. Further, he applauded Hazel's bravery. Few other doctors have acknowledged what a huge effort Hazel is making just to survive. I've tried to tell Hazel myself, when she laments being a burden to me and wishes she could help me, that she is in fact helping me. I tell her that she's doing what she needs to be doing, resting. I tell her that's her job.

Dr. Hain recognized too that the rest we're getting is not real rest: that relief from stress can't come from merely lying down, while the longer you lie still the more things you are aware of that you're not getting done, and the more the unmeetable demands of the world distress you. He acknowledged that what we really need may not be possible. Real rest, a couple of years at least of knowing there's no need to fear, of knowing with a certainty that everything will be alright. I kept silent, turning an oblique cheek, to hide from Hazel the tears pouring down my cheeks. Acknowledgement of someone else's burden is a wonderful thing, and it hurt me so that I can't do anything to reassure Hazel and relieve her burden of worry and fear.

Dr. Hain went further. He told Hazel that she's brave. He repeated the compliment several times: "You are so brave." And it's so true. My beautiful elder daughter hasn't complained when her younger sister has been able to take classes at the junior college, act in summer stock, go traveling, while Hazel lay as quiet as possible riding the tides of pain. She hasn't raged at the loss of her teen years, though perhaps she should. She hasn't thank goodness tried to end the pain with suicide or resorted to drugs. She is so very, very brave and I'm so proud of her, and I glowed to hear someone else recognize my child's achievement.

If the miracles keep on coming, maybe they'll create a way for Hazel to become a regular patient of Dr. Hain's. As it is, out MediCal insurance won't cover that and we have no money to pay out of pocket, so it can't happen now, but it is my hope that someday Dr. Hain can help Hazel some more. For now, the lack of paperfolding, the advice to be touched more and to get annoyed more, and above all the understanding and appreciation that he gave Hazel in that one visit make Dr. Hain a miracle-worker in my book. Well, okay, in my blog.

Miracle Seven? No, the gods deserved a day of rest. That's all for now, and plenty. Perhaps there were some more miracles in the Big World with all of its horrors and heartaches. I hope so. And come to think of it, maybe there was in fact a seventh miracle for me, in the form of a sort of sabbath. The six miracles restored me. They gave me blessed rest from struggle, and the wondrous sensation of being supported. I've emerged with that wonder of illogic, hope. I feel certain that somehow, sometime soon, what we really need will come to us. Some more challenges and recreational activities for Holly, so she doesn't lose her teens stuffed in a house with two invalids. Some mushroom friends for Hazel, and the ability to rest a real unworried rest. For us all, a home, permanent and affordable, so that we don't wake in the wee hours wondering where we'll next rest our heads. Maybe over the long term, with enough stressors removed and enough real rest, maybe, maybe, healing.

If you have your health, breathe deep and feel the miracle of it. If you haven't got health, take hope. We're going to be all right, all of us. I don't know it for a certainty, but in good moments I have a sneaking suspicion. Everything will be alright, even when Dog Meets Skunk. And now, I'm off to prepare another tomato bath, so I can get back to yoga breathing. Namaste.

Friday, September 4, 2009

Wonderful Week

Soon as I can, I'll post about my good week. Right now I'm still recovering from it.

Wednesday, August 26, 2009

Visualize Clear Vision

We need a car and a place to live, my kids and I, and preferably not a car that's a place to live.

My magical mathematical friend, Bette, reminded me to visualize. She suggested I blog my vision, putting it out there to see if the right thing comes in response.

My problem is, I can't see clearly what it is we need.

Maybe we actually should nest two birds on one twig, as the kids' Daddyman nonviolently resets the metaphor. Maybe we should have a vehicle to live in. A good sized motorhome, with low gas mileage, could get us by until things improve.

Except that we are too ill to drive from campsite to campsite as we reach the limit in each. We are too ill to travel and actually enjoy a nomadic life. Besides, who knows when or even if our health and finances will improve?

A car and a home, then.

The car isn't too tough a vision. Low gas mileage, roomy for kids 6' tall and up, with a roof rack to transport a bike or kayak for the kid who is still well enough to peddle and paddle. In reasonably good shape, with okay tires and no major repairs expected any time soon. A stereo would be nice. AC optional. Must be automatic transmission because of my bad knee. Something decent, I'm wishing for: not rusty and ready to fall apart.

Our needs for living space are harder to define. With two teens, it would be good to have 3 bedrooms, but we could squeeze into two. With four cats and two dogs it would be best to have a house, not an apartment. But how can I make any stipulations beyond a prayer that the cockroaches not be piled above knee-high, with only $300 to budget for rent?

It's a ridiculous amount to offer anybody, but it's nearly half of my current income. Subsidized housing (site-specific section 8, for those with a handle on the jargon) would charge me one third of my monthly income. We'll need something left over to pay minimal bills and buy food and clothing.

How can I visualize an ideal situation, within such narrow restrictions? I know that I need to try, but so many variables just confuse me. In the country? That's good for our health. We get more ill if exposed to lots of noise and bad air. In the city? That's good for convenient access to doctors and shopping. Ride a country bus and carry heavy groceries up a country hill and you can find yourself idealizing a convenient life near a mall.

Can we be close to some of our old friends or new friends? Do we have to move to somewhere completely unfamiliar? What if we have to leave the state?

There's what we like, what we prefer, what we need, what makes sense, and they're not always the same.

Once we get a place, I'll confront the question of how to actually move there with no energy and no money, with nothing but aches and hopes. But the where is first. The how will have to wait.

I'll try again to do some visualizing when I'm a little less stressed. For now, I'm trying not to panic. I'm visualizing visualizing.

Friday, August 21, 2009

You Don't Look Sick

No, I don't look sick.

When you see me, I don't look so bad. So is anything really the matter with me?

First of all, "when you see me," is an important qualification. You only see me when I am able to get out.

The three out of four days, roughly, when I'm too ill to go out, you won't be seeing me. I probably won't get out of my pajamas some of those days, might not take a bath, might not get out of bed on the worst days. So many days I plan a two-mile bus trip to get groceries, only to have to put it off, too sick to do the walking, riding, carrying, and even the small amount of thinking and planning involved in a grocery run.

Second, even when you do see me, I'm not feeling as well as I look.

How well do I look? If you knew me before I got sick you might notice the lack of spring in my step, the absence of my usual bouyancy, and the stress of pain overlaying the former looks of humor and caring in my eyes.

If you don't know me so well or look so closely the pain might not be at all visible, but it's there, just like your pain is there when you have the flu.

Remember the last time you woke up horribly sick, on a day when you had something important to do? You probably got up anyway, ate, took a shower, got dressed, brushed teeth, hoping all the while that you would feel better once you were ready.

If you were really sick, you had to admit defeat, cancel your plans and collapse in bed, one huge ache.

What if you woke feeling that way every single day?

What if this continued for over two years?

That's where I am right now. I can't stay in bed every day. I have to go on taking care of bills and cooking, laundry and shopping, doing what school things I can with my kids, finding a way to clothe and house and feed us all. Nobody is taking care of any of that for me.

When you see me, I'm making a huge effort to be up on my feet and out in the world. Every minute, I'm wanting to go home and lie down. No matter what medicine I try, my head is aching, my whole body aches as if I have the flu, and sharp pain presses my chest. My mind is slowed down too, just like when you're so sick with flu you can't think clearly.

I don't look sick, but I can't do my left-brained writing work anymore. I kept trying until I reached the point where it was a huge effort to squeeze out four hours per week and I had to choke back pride and tears as I told my last client I couldn't take on another job.

I don't look sick, but when I have had to do some manual labor---just carrying moving boxes, or whacking weeds, or even toting those grocery bags up the hill from the bus stop---I stop in the middle often, wincing in pain, I push on through and do what has to be done, and I pay for it with several days of mind-numbing pain and exhaustion.

On those days, those ones where you don't see me, I hit moments when all I can do is cry.

Tuesday, August 18, 2009

Alas in Wonderland

There have been a lot of surreal moments in this little journey, but few as strange as today.

True, it was very strange that back when my home was foreclosed, despite my being in constant phone and mail contact with Queen of Hearts Mortgage, the Queen sent a messenger to my door with a thin slip of paper. It looked scissored from a xeroxed sheet. Maybe fifty two such slips could be made from one standard piece of copy paper. On it were the Queen of Hearts Mortgage Company's phone number and a command that I contact the Queen immediately. Curious, as I was already in contact with her, but it was curiouser that the phone number printed there was incorrect. Curiouser and curiouser, they did this not once but twice. A messenger again drove for at least an hour to reach me, handed me the thin scrap, and again the number was wrong.

That was weird, yes, but maybe it was a weirder shade of surreal to drive for six miles behind the White Knight, honking my fool horn off, trying to let him know that the moving truck he was driving had its rear roll-up door wide open. It was already clear that Queen of Hearts Mortgage, which lost its head not long afterward, was gardening with painted flowers. But I had credited the White Knight with at least the presence of mind to pull over when a following driver honked for ten minutes while flashing their headlights.

Then again, I should cut a lot of slack for the poor White Knight, who after all had spent a couple of grueling days helping with the packing of the cluttered three-bedroom house we once shared, and had slept there on the floor while I went home to our two kids. We three had already moved into the house-sitting gig where the three of us still sit, looking for another house. I'll hand it to the White Knight, he knocked himself out---well, yeah, clearly he had knocked himself silly---taking time away from his own homeless and underemployed shambles to help pack and move our former mutual shambles. He had more excuse for an absence of mind than had the comfortably overemployed Queen of Hearts.

Less clear was the reason for the lack of clarity in the Mock Turtle, a psychologist I saw for one session, and the Gryphon, her office manager who had let me see the Mock Turtle before realizing my insurance didn't cover her help.

The Mock Turtle told me that what I needed was to practice Mindfulness. She knew some books which would help. I explained that while I can still write sometimes, a little, reading was really hard for me.

Perhaps the Mock Turtle's mind was too full of her own sorrows to hear mine? She sent me off with a xeroxed copy of a complete book on Mindfulness. Also, she asked for my snail mail address so as to recommend another book, as email was to her as slippery as a lobster in a quadrille.

A few days later I got some mail from the Mock Turtle. The envelope was stuffed tight as a whiting with a sheaf of 19 sheets of paper, with a yellow sticky on top. The sticky told me the title and author of this other recommendation, plus expressions of pleasure to have met me etc. That was really all the Mock Turtle needed to send, had I been in any shape to read a book. But the top five pages of the sheaf turned out to be the first five of eleven pages on Amazon related to the book. She had printed it all out for me. I have the title and ISBN number, editorial reviews and product details, all right here at my fingertips and nearly as convenient as the internet. That's okay, I can deal with a paperful system. But what were the additional 14 sheets? Blank paper.

I was not devastated when The Gryphon discovered that based on my insurance plan I couldn't be seen by the Mock Turtle after all. I felt I could learn my mindfulness from someone whose mind was not quite so full. I accepted the kind wishes along with her gift of 20 pieces of paper and 90 cents postage, and I moved on, to see what else Wonderland might have to offer in the way of astonishing people.

At Wonderland Affordable Housing they told me that they no longer do housing. "Why are we still listed in the pamphlet you were given?" they asked in astonishment. I couldn't answer. They referred me on to Looking Glass Housing.

When I phoned them, however, Looking Glass asked, "Why did Wonderland send you to us? They know we've never done housing. But call White Rabbit Homeless Services and they will help you."

The White Rabbit did her best to help, going through all her listings. "Have you dropped in on Wonderland? Yes? Well, then, you might look into Looking Glass."

I told her again to whom I had already spoken, and reiterated my situation in brief: no home, nearly no income, two children, and myself and one of the children disabled, with no car to live in.

"Tut tut, that is a shame," the White Rabbit fussed. "Well you know, you do have somewhere to stay, for now, that's the trouble. It's much harder to get help unless you're already on the street. If you stay in a campsite for a few months, you'll probably get something."

Yes, she told me that my sick self and sick child and well child should all three pack up our nonexistent car and go camping. There are affordable housing complexes. I can see the garden, but I can't get into the garden.

Still, all of these Cheshires mean well. Their paws point Here and There at once, but those smiles, unfading and bizarrely broad, are nevertheless sincere. Consider the kind people who I contacted when I needed to find something labeled Eat Me.

When at my wits end to get groceries up the hill without a car and still find energy to cook the damn things, I phoned Hatters and Hares For the Hungry. They told me that yes, they did indeed deliver nutritious meals to the chronically ill. Was I dying? No? Ah, too bad. They could only deliver nutritious meals to people who were actually dying.

This condition, Myalgic Encephalomyelitis, requires adjustment to a new reality. Today I have moved on from that particular problem with a resolution that I will not overtax my energy by expecting to shop, cook and eat all in one day. Monday is laundry, Tuesday is shopping, Wednesday is cooking and Thursday is eating. On Friday I feed the pets, on Saturday I sweep, and on Sunday I take out the garbage. All very reasonable. A mindful adjustment to my new reality.

Today however, I found myself back in Wonderland.

I have applied to the Red King for Disability Benefits. These Flamingo Benefits for Disability, from the Red King will, if awarded, exactly cancel out the Hedgehog Benefits for Poverty which I am already paid by the White Queen, so I will if approved by the Red King have a net gain of one square forward, one square back.

Today, the Red King sent me for a psychological assessment with a Ms. Dumpty.
The Red King spent over $150 on the taxicab alone, to get me there, plus whatever he pays Humpty Dumpty. The goal, it seems, was to find out if I am aware of very general reality and can follow extremely simple instructions.

The first part of the test consisted of questions like, "What floor of the building are we on?" I could not resist a glance toward the window as I answered that it was a one-storey building. Ms. Dumpty made note and asked, "Who is President?"

The second half required me to respond to such commands as, "Write a sentence," and, "Fold the paper in half and put it in your lap." I did these things.

I could probably tell you who the president was and draw two linked pentagons even if I had eaten from the wrong side of the mushroom. If this is all that is required to be found capable of gainful employment, and such trifles as my pain and exhaustion don't matter, then I'm afraid my application for Flamingo Benefits for the Disabled will be denied. Perhaps, however, other measures of my fitness will be taken into consideration. If I am left sitting on the wall for much longer, I will surely crack.

Probably the most revealing portion of today's exam was my blood pressure test, solidly grounded in the digital readout of a sphygmomanometer from this side of the looking glass. My blood pressure was something like 96 over 63. I probably need more pepper.

The nurse thought that couldn't be right so she spoke severely, beat me a bit, poured pepper everywhere, and retook my blood pressure. It was lower still: around 93 over 61. She peered at me. "Can the poor thing be alive?"

This unusually low blood pressure is quite probably related to Myalgic Encephalomyelitis, as it's described in the Canadian definition. I've always had fairly low blood pressure but this seems ridiculous. Couldn't we arrange for a tilt table test? And wouldn't this make it fairly clear that what we're dealing with, though it does have the psychological impacts of any chronic and debilitating illness, is a clearly defined physical disability?

Maybe this will all make more sense to me, when I become a Queen, or a pig.

Friday, August 14, 2009

Reliable Transportation

If you expect to be disabled by chronic illness, particularly if you have a dependent who will be similarly disabled, plan to maintain reliable transportation. I cannot overstress the importance of this.

A couple of years before we got myalgic encephalomyelitis, I bought a lovely Subaru Forester. Its convenient size for the family, fuel economy and good handling on the winding and sometimes slippery backroads in our rural area all made it a great choice. It was used but in excellent condition and still under warranty. I made the monthly payments on this practical vehicle, kept up its scheduled maintenance, kept it equipped with good tires, and kept registration and insurance current and, against the arising of some unforeseen problem, I paid auto club dues so towing would be a simple and relatively carefree arrangement. In short, I was a perfectly responsible vehicle owner.

When I got sick, inability to work and earn conspired with the overwhelming onslaught of related troubles and all together they made it gradually and at first imperceptibly harder to remain so perfectly responsible. Late payments, delayed maintenance, delinquent registration renewal fees all shuffled in with the paperwork problem pile, to be caught as caught could when each day I made valiant attempts to meet normal and additional responsibilities through the ever-present cloud of pain and exhaustion.

By the time the upkeep of that car was clearly too much for me, I was too sick and overwhelmed to know what to do about it. I tried asking family members, friends, and financial advice professionals associated with charitable agencies. I explained my problem to the bank that held my car loan. Should I sell the car? Could someone take over payments? Should I trade it in? In my illness, when clear thought on what to make for lunch can sometimes overwhelm me, these questions were an enormous challenge. Before I could muddle through to an answer, my car was repossessed.

All I knew was that I needed a car. The hour’s drive to the clinic where we had our regular medical appointments, the far-flung and inconveniently located psychologists and dentists with whom I was supposed to arrange additional health care, even the five minutes’ run to town for groceries all made it necessary to keep a private vehicle. Life in a larger town, along major public transportation routes, would have been different. I keep that in mind as I search for the affordable housing that isn’t available.

(Of course, in a city my insomniac but otherwise well child couldn’t take the night time walks that help her battle her migraines and sleeplessness, so back to wanting a rural home and a reliable car. The benefits of clean air and a caring community increase the wish to remain here, not that beggars are allowed to choose. I’d accept any place we could call our own, anywhere.)

In any case, for now I’m here, and here I face the challenge of hauling a bedridden child to his feet and dragging him through a grueling six hours round trip on jouncing, rumbling buses with his ever present pain—and I mean jouncing, hitting every pothole hard—to make it to one appointment being required of us by the Social Security Administration in order to determine whether we are, in fact, disabled.

There is a solution in the works, thanks to my sister who will help me buy a car, and thanks to St. Vincent de Paul’s Society which sells inexpensive but reliable cars. However, this solution is still some weeks away, it seems. Meanwhile, I get the groceries by bus. The last time, carrying grocery bags up the hill from the bus stop wiped me and my daughter out so badly that even she who I repeat does not have ME was sick for two days afterwards and I went to bed that night in tears, the pain about as bad as it ever has been. I need to go grocery shopping again today and maybe the reason I'm writing this is to help me work up the nerve to phone and beg someone for a ride. I wait to make dental and mental appointments, and pray that the planned car-buying will happen soon enough to get me and my sick kid to our next appointments that can’t be put off.

So you see, it is simply impractical and the extreme of bad planning to be chronically ill, in poverty and carless in a rural area. I do hope all of you will take my advice and plan your lives—or the loss of the lives you knew—with better care.

Tuesday, July 21, 2009

Some Ways To Help Sufferers From Chronic Pain

What We Need

What do sufferers from chronic pain need? There’s not a drug that takes it away. We need a cure, yes. We might be aided by therapies of various kinds, yes. But the pain goes on and life would be impossible with the pain, without some support from others. I’ve identified what I think are the basics, and some ways that you can help.

Friends:

It’s tough to make new friends or keep the old when we have almost no energy to put into the relationships: when we’re in too much pain, or too exhausted by pain, to go out and participate in social activities. We might be able to get some friends to come visit us, once or twice, but friendships fall off when there’s no reciprocation. As weeks and months go by without us returning their visits, our friends stop coming by.

Even when we are able to be seen, we’re not very attractive. Our energy is dulled, our sparkle is dampened or utterly erased by ongoing illness. The difference in the way people receive us is profound. With faces drawn and eyes full of stress, when we are able to make it out into the world we meet far, far fewer smiles than back in the days before chronic pain, when we were able to present ourselves with some verve.

I don’t know of a solution. Get by with fewer friends, savor and treasure and wring every last drop of appreciation from each small human contact, cherish memories and hopes? Beg and plead?

You can help by being steadfast friends. Remember us as we were, accept us as we are, and be persistent in contacting us. Don’t let us become isolated. Find ways we can contribute so we don’t feel that the relationship is all take, on our side, and no give. Let us know that we’re still a valued part of your lives.

Favors:

Some of the difficulty of keeping friends and family in touch could arise from the vast number of favors we need, but we need them and we are placed in the very uncomfortable position of having to ask for them, or let our lives fall apart around us. Some of us may qualify for in-home helpers but the funding for those programs is limited, so we may get perhaps one grocery run per week, OR one load of laundry and dishes, OR a meal cooked, but not all of the above. Even if we had help with all of these things there would be more: a hand with sorting through and understanding and paying or sometimes questioning the bills, help washing the car if we’re so fortunate as to still have one, a trip to the library, a ride to the doctor, some heavy things put into or taken out of storage… so many needs arise, constantly, and to have to ask again and again for help would embarrass a saint, so we bumble through, make do, or often do without.

You can help by offering help. Know that at any moment there’s a long list of favors we need, and some of them are very small. You could pick up our mail or take a check to the bank for us, and that small favor could save us the hours of increased pain if we’d had to struggle through that small errand for ourselves. Sometimes, we might not realize that we need something, or we might be too embarrassed to ask, so if you perceive a need, let us know that you can help. Or make frequent and open-ended offers: not, “is there anything you need help with?” because there always is. “What do you need help with today?” Please ask.

Distraction:

It comes down to brain chemicals: the strongest cure for pain is pleasure. When our brains are busy experiencing pleasure, we experience less pain. We are strengthened to go on by every moment of pleasure.

Alas, we’ve lost a lot of our sources of pleasure. The hike or bike ride we used to take may be beyond our abilities now. Dancing or playing a musical instrument, even picking up a novel and getting lost in its pages, can be impossible. But we need to find every possible source of pleasure and make time for it, giving it the very highest priority. Without some relief from pain we can’t go on.

You can help by dropping off some movies or books on tape, calling with a funny story, emailing some photos of your baby niece with mashed peas all over her face. Any little thing that might bring a moment or a couple of hours of smiles with minimal effort can help enormously. Don’t be put off if we’re not up for it this time. For some of us, going to a movie would be too exhausting, and for others, or at other times, it would be just the ticket. Try again another time, try another thing, help us find out what we’re able to enjoy and help us get our fixes of it.

Rest:

Whether through prayer or meditation, the comfort of a companion animal, soothing music or environmental sounds or complete quiet, we need to find our way daily, and some days many times in one day, to a point of complete rest. Pain may be waking us multiple times each night. Even if we’re getting good sleep, pain wears us down throughout the day. The smallest activity is a huge effort. We need ways and places to rest.

These can be easy enough to arrange at home, but very tough when we’re out and about. If we have cars, they provide us a place of privacy and shelter where we can tilt back a seat and take a nap or just let go to our tears or our chants or our prayers. If we’re reliant on public transportation it’s tougher. I have sat in a quiet corner of the library to cry when I couldn’t make it another step of my way to the grocery store. I’m reminded of the days when I had an infant in tow and needed a quiet place to nurse. A park bench, a nook in a hotel lobby, a bus shelter? Places where we can find a safe and sheltered spot just to sit are all too few.

You can help, again, as above, by finding out what works for us and helping provide it. Maybe you can share a meditation CD, or some comforting restorative yoga postures, perhaps even an occasional gentle and relaxing massage. Perhaps if we rely on companion animals to calm and comfort us you can help with their trips to the vet, their grooming or their walks. You can be active in advocating for public places of rest. Spend a day in your community being aware of the resources. Where would you go if you absolutely had to have a place to sit down, right this minute? What if it were raining, or night? If it’s on our route, maybe you can make your home available and make it clear that we don’t have to be up for a social visit but can just stop in to sit down and rest when we need to.

Hope:

I don’t know where it comes from. It’s not based on anything tangible in the present reality. This disease could go on until I die, and my living circumstances may never become easier. I may not find a home for myself and my children that I can afford and maintain with what little funds come to me through public assistance, but I have to hope. I have no choice. There are times when illness makes me feel like such a complete failure, that I’m sure my children would be better off without me: if I were dead someone would have to step in and care for them and they’d be almost certain to do a better job than I’m able to do. Yes, I do get that hopeless.

But I pull out of it, and I guess the reason is love. There’s still enough rational thought left to me even in the darkest moments, to recognize that suicide would terribly hurt those I love, and the thought of their pain is unbearable. So for those I love I cling to hope and keep going, knowing things could get worse, but imagining that they might just get better.

You can help by being available in the bleak times when hope deserts us. Maybe there are inspirational words that have helped you through exhaustion and despair, that you can share, and if you can offer them without pressure they could be welcome supports. Maybe there will be a moment when a squeeze of your hand will pull us through, or your message on the answering machine, even though we’re not able to pick up the phone just then, will remind us that somebody cares. We might cry on your shoulder if it’s available, or we might not cry on it but be made stronger just knowing that it’s there. Maybe there’s a little talisman you can give: a lucky coin to keep in our wallet or a pretty hanky to cry on: some silly thing can help remind us that we’re not abandoned. Remind us of love.

Acceptance:

We will fail you. Just don’t blame us. We became ill through no fault of our own, and our continued illness is not for lack of effort to achieve wellness. We don’t want to be this way. We don’t want to be so needy or screw up in so many ways. There’s plenty of blame, shame and regret in life, and in dark hours be sure we’re heaping it on ourselves, however undeserved.

You can help us accept where we are, and work with it, if you do so yourself. Cut us a whole lot of slack. Help us not to be embarrassed at needing help, by being gracious in offering it, letting us believe that we're somehow doing you a favor by accepting your help, and not expecting any return (though we long to somehow repay all we receive), and accepting any way in which we can indeed help you in return.

Understanding:

We look normal. We show no outward signs of illness. If we have a handicapped placard on the car we might get glares from people who wonder where the heck is our wheelchair. We need special assistance and concessions, but it can be very unclear to others that we need them. Even from our own selves we might not always get the understanding we need, and we might continue to expect and demand too much of ourselves and not see why we can’t deliver.

You have already helped, by reading this. Please share this or any other information that helps people understand what it is to live with chronic pain, and how they can help the sufferers.

Tuesday, July 7, 2009

July 5

Notice: help accepted. Gratitude returned.

The friend who can bring me Reiki and the one who can bring Restorative Yoga and the one who can guide me in Qigong, the friend with some time to help whack the weeds and the one with extra eggs and lemons, the stranger who gave me quinoa and the stranger who is helping prepare my long overdue taxes, all of you have helped enormously.

The family member who cooked some healthy meals and the one who helped me move, and all the friends and family who’ve offered insights from their health histories and those of their acquaintances, have all helped me feel less lost and alone.

The kind and caring social service worker, so different from her counterpart in another county, who has gone out of her way to guide me towards solutions for one problem and another in a life too wrecked for me to salvage alone, and the amazing friend from the long past who came back as a better friend than I could ever hope for to loan me and my children a house for as long as he could: these have kept us fed and sheltered when I couldn’t do it for myself.

The friends who offered money: I may yet take you up on that, when I know how best to apply it as a solution and not just a stopgap.

The lifelong friend who could both provide work I could do from home and be patient when I was unable to work at all, has done so much to keep me afloat and in hope.

The dear friend who made me my snuggly blanket that hugs me when arms to hug with are so far away, and the loved one who sees my pain and gives me a holiday from it with a song or a game or a silly story---there’s still love and laughter in my life because you won’t let go.

The isolation of long illness won’t conquer me if you persist in breaking through and finding me. The phone calls I’ve enjoyed and the ones I’ve had to decline, too much in pain to make a conversation: they are all appreciated. The people who prayed, chanted, made a wish, kept a thought for me and my kids: all those are felt and treasured.

I don’t know how it will happen but I have no choice but to hope and believe that long term solutions will be created, through my own efforts and with the help that so amazes me, the kindnesses that make me cry more than the pain. I never wanted to need so much help, I doubt I ever deserved so much help, and I can only be astonished and grateful to receive so much help. Your help gets me past despair and inspires me to resolve that I will reach a place of strength and back on the giving end, again.

4th of July

Half an hour or so whacking weeds, two very simple meals cooked, a drive of two hours round trip, groceries bought: that was yesterday.

Today I pay for all that activity. The troll is on my chest as I wake, its weight taking my breath, panicking my heart, its foul claws piercing dealing pain great enough at first to mask my other pains.

As I breathe and relax the troll backs off a bit. The chest pain subsides enough for me to feel the other pains: throbbing in my temples, stabbing at the back of my skull, chafing in my throat, and, as if I’d run a marathon yesterday instead of an errand, deep muscle pain in my inner elbows and the backs of my knees.

Writing through it, pushing against it, is like heaving against a heavy door that blocks fresh air from a tiny, unventilated room. With great effort I can get a breath, enough to go on for a little. I write a sentence or two then subside, hearing my pulse like tides crashing inside my head and feeling the cotton invade my brain.

Wait a little, breathe, words come back, slower now, and I resume writing, until the text starts to swim and one word falls over into another, sentences stumble and tangle and I have to stop.

Sometimes it’s funny. The other night in exhaustion I tried to tell the dogs to stop barking but the yell that came out of me wasn’t “No,” or “Hush,” it was “Box.” Actually, it worked, they hushed, so all’s well between me and the dogs, and we get another in-joke to enjoy.

But I don’t want to be funny and bumbling. I want---I need---to be clear and sharp. Paperwork piles up, and not just the usual but extra paperwork created by the illness: there’s not only bills and taxes, but extra medical forms, disability documentation, social service applications, foreclosure, bankruptcy, an avalanche set off by this damned illness.

A manageable life is conceivable, and yes, even one with time and clarity for writing something fun again. I have to believe that I can get there or the moments of worst despair would do me in. Hope keeps me going: slowly but surely and with every bit of help anybody can spare I’ll build a life that eliminates enough stress and includes enough rest for there to be more to me than this struggle against pain.

For now, though, it feels like “me” has been smothered by ME. The troll seems to be winning. By the time I finish writing this, despite breaks, my brain is fogged and pulsing so hard I can’t tell you what I wrote, or go back and read it.

Sunday, June 28, 2009

The Days I Don't Blog

I would like to blog, or better really write. Failing that I wish while resting I could read. I spent an hour on hacking down weeds at the house where we're staying for now, and another on cooking meals, a half hour on paperwork, and that was all I had for today. Energy used, confusion descending, pain.

I would also like to swim, hike, dance, travel, go see you! Wish I could take a vacation from sickness.

If I have to be housebound the dream is to be like Laura Hillenbrand who wrote Seabiscuit despite ME and maybe someday I'll manage the disease well enough to write but now this little bit is all I have left squeezed from exhausted brain. She maybe had a lot of support. I should write about this sometime when I have a little more energy I guess. I want to explain sometime soon what it's like day after day, what I do if I'm doing "nothing."

Saturday, June 27, 2009

Oh Yeah, And Another Thing It Isn't!

When the acupuncturist looked over my chart and said, "Fibromylagia, huh?" I was thrown, but I knew he'd be using a different diagnostic system anyhow, so it didn't really matter what my diagnosis by Western terms might be.

Since it was on my chart, however, I gently mentioned it to my primary care doctor, an osteopath. Please excuse abbreviations: I had a character limit to work within so I kept it brief. (Bet you wish I had one of those on this blog!)

Dear Dr. Osteopath:
Acupuncturist said Fibromylagia; my understanding was diagnosis is Chronic Fatigue so wanted to check that.
Also learned that WHO uses term Myalgic Encephalomyelitis and under that term found information that seems possibly of help to me. I'd like to know what you think.
Some articles I can't access as they're in med jrnls that req subscriptions: http://www.name-us.org/DefintionsPages/DefOverview.htm
This definition seems to describe well what has happened to me and my son: http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
Life impacts worsening, trying to get disability and housing, able to work less since first saw you, trying to do as you said and adjust to lower levels of activity.
Wondering if these descriptions and possible tests might help me establish disability for benefits.
Starting Pain Management Aug 11, hope that will help.
Any thoughts will be much appreciated!

Thanks,
Creek

Her answer:

Dear Creek,
Many times people use fibromyalgia and chronic fatigue interchangeably.
Regarding tests, etc, I have never seen a need for them in order to verify disease for disability purposes.
Hope the pain management program is helpful.
Dr. Osteopath

Chronic Fatigue and Fibromyalgia the same??? And no response at all about Myalgic Encephalomyelitis.

Now, it is possible for a person to be cursed with both ME and Fibro, but I pray that's not the situation I face. What I was hoping for was a clarification of my diagnosis.

Further, I was hoping that she might run tests to confirm the fairly obvious ME diagnosis.

In my wildest dreams I hoped she might help me follow the protocol for care of ME.

What I got was more muddle. It's going to be a long haul educating doctors, or else maybe a move to Canada.

Oh, Canada!

What It Is and What It May Be

What it is, it still is, and that's Myalgic Encephalomyelitis. That's not some fancy long word to describe my illness, or a label with which doctors are trying to enslave me. If only the doctors would all accept that label!

Unfortunately the US CDC miscategorizes this illness as CFS. The WHO knows it as ME. US doctors are a bitch about accepting the WHO term, but here's info that makes it all clear:

The Australian treatment protocol: http://uk.geocities.com/me_not_cfs/myalgic-encephalomyelitis-chronic-fatigue-syndrome-guidelines.html

The Canadian description: http://uk.geocities.com/me_not_cfs/ME-CFS-canada-protocol.html

This is the stuff I need to get to my doctors and my kid's doctors. Meanwhile, we get a lot of bad advice and mistreatment from the medical establishment with their well-meaning but misguided approach to "CFS."

That said, whatever else I may or may not be able to eat, it looks like I might have to eat my words, or at least the ones that say "it's not gluten." Upon reintroducing gluten to my diet I immediately became ill in ways you would rather I didn't describe, but for the sake of any other ME/possible celiac sufferers in the audience I'll tell you anyhow: severe stomach cramps and diarrhea.

It turns out this is a predictable reaction if you have gluten intolerance (celiac disease) and you accidentally eat gluten.

It also turns out that you have to be including wheat in your diet when you take the blood test for celiac disease, or the results may be thrown off. So now the plan is, I'll either continue eating wheat and retake the blood test, perhaps get an endoscopy to check for healthy cilla in my intestinal tissue, or else do both.

Anyone concerned about celiac disease can find excellent information at the Mayo Clinic's site: http://www.mayoclinic.com/health/celiac-disease/DS00319

But here's the thing: I might have celiac disease, and if so I'll go off gluten again and my cilla will regrow within three years max, but that doesn't take away the ME, alas. That's just another, aggravating condition on top of the ME. So we still can't say, "Maybe it's gluten," or, "what you've got could be candida." We can only say that the ME may be aggravated by the additional presence of other illnesses.

And that's all I was trying to say in my last installment, "What It Isn't." I was trying to ask people not to try to explain away what I've got, as something else. It's like telling a cancer patient who has a cold that once they get rid of that post-nasal drip they'll be all well. Certainly she'll feel more well and better able to cope with cancer when she hasn't got a cold, and I imagine I will feel more well and better able to cope with ME if I'm able to eliminate any other aggravating conditions.

Finally, again, this is the Western view of things, and indeed, a Chinese herbalist may be able to successfully treat me with a thoroughly different set of diagnostic terms. I'm looking forward to an opportunity to try that out, some day. Meanwhile I do have acupuncture to help support my system and reduce my symptoms, praise be.

My hope is to be embraced by both Western and Eastern systems and above all by my friends and family, as I continue to cope with and counter this condition, whatever it is and may be. Call it what you will, the upshot is that I'm taking in every bit of advice I can, acting on as much of it as is humanly possible, and doing so in the face of physical pain, cognitive impairment, generally good humor, but also occasional lapses into despair from which I need you, my loved ones, to drag me back whole. Hang on tight, please, and don't let go.

Thursday, June 25, 2009

What It Isn't

"...now there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis."

-Dr. Nancy Klimas, on Myalgic Encephalomyelitis (What it IS)

It isn't AIDS, cancer or MS, but sometimes I almost wish it were, because we would get more understanding if we had one of those higher-profile, more accepted diseases. There are still people who think that we with ME are not ill, or are ill with something else, something more real.

Would you say to an AIDS, cancer or MS victim, "it might be candida?" Probably not. Yet friends, family and even doctors have suggested that what my 15-year-old and I are suffering from might be a panoply of other illnesses.

Today we got test results back. It's not celiac disease. The gluten-free diet suggested by the rheumatologist, followed faithfully despite cost in time and money for two and a half months, has been worthless.

We baked with gluten-free flour, went out of our way to find other gluten-free products, turned down the free pasta and bread that were offered to us although we don't make it through much more than a week on what food stamps provide. We turned down all those wheaty oaty ryed-up treats and I brought gluten-free muffins to a potluck. It didn't make us feel any better, except that I was pleased that the celiacs present were so glad for the muffins.

Doing without gluten was not making us a bit more well, but I heard that it can take many months so we stuck it out. I learned at last through my own research that there's a test for celiac disease, which is the intolerance of gluten that torments so many people. So I asked the doctor for that test.

Today, the test came out negative. Going wheat-rye-oat-free was an education and it made me sensitive to the plight of those who can't digest gluten---I'll bring them those muffins again---but what a waste of our time and money, Dr. Rheumatologist. Why didn't you tell us about the test?

It's a relief to be able to eat cheap, yummy pasta again, but it would actually have been more of a relief if indeed going without gluten had relieved any of our symptoms. But Celiac Disease is what it isn't.

Now listen.

It isn't candida either, or mold or allergies or sinuses or depression or any of the other things that have been suggested by kind, well-meaning people who hear that we are ill and long to solve our problems. Believe me, I understand the impulse. I've researched so many things it might have been, since long before we got diagnoses.

It's ME. We know that, and it's hard enough for us to accept it, but we have to. So please, you accept it too, and stop looking for other causes for a very clear presentation of this very real disease.

Granted, we could develop any of those other problems on top of ME. An already-present propensity could flower in the presence of ME, or our weakened immune systems could allow us to succumb to something we had no problem with before. Just like last week, when I had that awful cold on top of ME, yes: ME or MS or cancer or AIDS patients can all get sick with other things in addition to their chronic illnesses. But to blame our chronic illness itself on anything other than ME is denial and it won't help us get better or bring anyone any closer to treatments or a cure for ME.

Know this.

What it is, is Myalgic Encephalomyelitis.
We feel pain almost always.
Our circulating blood volume is low and our hearts are working extra-hard to compensate.
Because of that cardiac stress, exercise is NOT indicated. It makes us feel far worse.
We are exhausted, from the stress on our hearts. From the inflammation in our brains we are sometimes dizzy and sometimes confused, and we might need to reread, ask you to repeat, forget, lose the thread of our own trains of thought, need to hang up the phone and go lie down.

I know that the doctors, the family and the friends meant well. If only I didn't have to educate doctors when I can barely read long enough to educate myself! Dr. Rheumatologist, thank you for the intention if not for the advice.

You can see our pain and you want to help? Thank you, thank you so much. I have been touched by the caring we've encountered. But if you want to help, don't try to tell us what it might be. We need rest and we need less stress, so if you can provide those, great, and if not, your understanding and caring are appreciated fully, without any attempt by you at offering a cure for something that it isn't.

Tuesday, May 19, 2009

Immobilized

Yesterday acupuncture. Felt good right after. Plummeted since. Today immobile. Wanting to get a million things done including the post I intended to create on this blog, thanking the wonderful people who have helped. Know you're in my thoughts.

Friday, May 15, 2009

more catch 22

Kaiser couldn't provide psych services because we're on MediCal. The local community service organization that usually provides psych services to MediCal patients cannot provide psych services because we're on Kaiser. Depressed, yet?

Sausage on my nose.

The worst pain is emotional. Sure I feel sorry for myself sometimes when I think of things I used to do and can't now, but there's ten thousand times the sorrow and frustration in seeing my older kid completely bedridden.

A kid who used to love hiking and kayaking, who reveled in working hard in the garden and in solving challenging math problems, who wrote quirky complex stories packed with clever wordplay, who plans to be a lawyer and who at 15 would like to be running with a pack, dating, hanging out---on a good day, this kid is out of bed for a meal.

I would do anything to free my child from this illness. If I could, I would take twice the disease on myself, to take it off my child. I could happily enough watch and guide from bed while my kids forged ahead, tried their talents, took on their challenges, made their mistakes and created their triumphs, finding their ways in life. If someone gave me one wish, their health is all I would wish for. But I know from the old stories that given a wish I would end up with a sausage stuck to my nose. You know the folktale? He wishes for a sausage, and she says he blew it and in anger wishes the sausage were stuck to his nose. So we do what we can, short of wishes.

We've been to doctors, we've researched on our own, we've tried alternatives, and what it seems to come down to is rest. Complete, profound rest. It's hard to get, when your mind stays active while your body lies still, and your mind travels over all the things you'd like to be doing, ought to be doing, can't be doing.

Most parents can congratulate their kids on great performances on tests, in sports, in arts, can thank their kids for helping out with household chores, can praise them for so many accomplishments big and small. My child is achieving one great and terrible feat of rest, with rarely any tears to betray the cost. I mean it wholeheartedly when I say, "Don't worry about it. I know how much you'd help if you could. You're doing exactly what you should be doing, and you're doing it so well!"

I take what we have, I try to arrange for our basic needs, I try to rest as well, and I try not to wish. There are harder lives. There are mothers who mourn their children. I treasure this child's smiles and jokes and honor the heroic courage that few but me will witness, and I try not to wish for anything but the blessings we have, because it would really be a bitch to deal with all this plus have a sausage stuck to my nose.

Thursday, May 14, 2009

Sonnet 170 South

Comic relief will occasionally filter into the tulgey wood. Silliness is after all my raisin dart, and ME just my tragic flaw.


Sonnet 170 South

I knew a man who dreamed he saw Joe Hill
and all the best minds of our generation
alive as him or me. I know him still.
His dog is better. He eats Ken’L Ration.

We sang together, “We shall overcome;”
the speeches were sincere, the marches long;
until we fell exhausted and sat dumb
or sang the Oscar Meyer Wiener Song.

We went our separate ways. He wrote some verse
about the universe and what it thought
and if his poems were rot my own were worse:
on being all I can be but am not.

So gather dust, typewriter, empty sheet.
The Pepsi generation can’t be Beat.

The Current Conundrum

It makes as much sense to prescribe antidepressants for ME as to prescribe them for Parkinson's or polio. In fact, antidepressants may worsen our condition. Yet there is a mainstream medical assumption that it would be of value for us to be under psychiatric treatment and on psych meds, and we must show that we're receiving treatment to qualify for disability benefits. And if we don't receive the minimal benefits to which we would be entitled (based on my fairly low lifetime earnings) how are we to find a place to live and finance the complete rest and healthful diet we actually need if we're to hope for improvement? In pain and brain fog, I can only hope that I can work through the system, educate the doctors, struggle, juggle, and, as prescribed, avoid stress.

For more information...

"This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization."
-
Laura Hillenbrand, Bestselling author of Seabiscuit

ME Society of America has excellent information, as has A Hummingbird's Guide to ME.

Who am I and What is ME?

Two separate questions, but becoming harder to distinguish.

Who am I?

I've always shied away from definitions. Even the most casual---select an icon, post a one-line status message, the tweet of a moment----bring me up short. How to define myself in this time, in this place, to this audience? How can my photo, my name or my bio convey a sense of me that has approximate truth? And of course it doesn't really matter, as we're all busy constantly defining ourselves and only briefly making reference to the definitions of others; bees touch flowers and fly on, the point never being the flower or the pollen or the honey, but the bee.

Pressed, however, I would once have defined who I am in standard ways: by what I do for a living and what I do for fun, what groups I belong to by nation and state or by gene pool, the phase of life I'm in, degrees earned, sexual preference and familial relationships. I remain a female Arab-American Californian MFA USC Film School graduate straight liberal pagan environmentalist funny homeschooling single parent in her 40's, not in any particular order.

Once I would have added, "I'm a screenwriter. I write and edit for a living, and sometimes work with the state parks. I enjoy hiking, kayaking, and struggling to identify flora and fauna. I prefer acoustic music and particularly world folk music: listen to a lot and play a little. I enjoy folk dance and am learning a few varieties. I love steampunk style and have some sewing and manufacturing projects in mind, as well as a steampunky screenplay in the works. I could be called a bit of a homebody since I enjoy gardening, cooking and baking more than going to parties. Even so, my kids and I travel whenever possible, taking road trips, visiting friends and family, camping. I can cross-country ski a little and want to learn more. I'm not a great artist but I like to mess around with pastels, sketch a little. I dream of sailing clockwise round the Mediterranean, stopping in every possible port and recording dance and music. I'm a homeowner, working to pay a mortgage and planning on assisting my kids through college with the equity."

All of that has changed.

Enter the second question: What is ME?

Myalgic Encephalomyelitis is a disabling disease. I won't go into a clinical definition. You can look that up as easily as I can, and can probably comprehend it better than me. Reading comprehension is one of the things the disease has stolen from me.

So I'll stick with what ME is to me. ME is the pain that holds me in bed for an hour or two after I wake. It's the profound exhaustion and all-over aching that strike after the slightest exercise. It's struggling to cook a meal or wash a dish, and feeling triumphant but exhausted if I can run an errand. Then, it's back to bed to rest up, hoping to ride out the pain and haul myself up onto my feel again to cook dinner.

Take the worst sinus infection you ever suffered and keep it with you forever. Or how about pneumonia plus a concussion? I've had both so I know. This is how ME feels to me.

I have better days and worse days. I make plans and cancel them. Loose ends stay handy, ready to be picked up and dropped again.

I can't dance, play music, hike, sew, earn a living or plan for my children's education, travel or dream anymore, so who am I? Am I ME?

ME is the governing part of me, now. It's the part of me that says I can't add to or revise this, that if it will ever be posted it must be posted now, and that this much writing was too much: it's time to rest, and rest, again.