Sunday, December 13, 2009

pain management

For 17 years I've been battling shoulder pain. I blamed it on the lupus/ fibro, because it showed up at the same time as the illness, but it seems it might instead be connected to my guitar playing habits. Regardless of the cause, it still freaking hurts and keeps me awake most nights. Because I'm now taking low dose naltrexone, I can no longer take the very effective narcotics my doctor prescribed me.

I've also been told for years to avoid advil, of which at one point I was taking 12 pills a day- because it damages your kidneys when you take it habitually. That was upsetting to me, because Advil was so effective and non-narcotic; it didn't make me sleepy, or have any other effects that I was conscious of.

I'm getting acupuncture again, which helps some, but my habits of guitar playing and long drives (my job, in other words) kind of undo the treatments, so I'm still suffering and trying to find ways to manage the pain.

So, I was pretty glad to to hear that ibuprofen is now available as a gel. I got a voltaren Rx from my rhuematologist, but i first heard about the gel's availability from a friend who bought some on

I'm also a fan of icy hot, but you can't use icy hot in combination with a heating pad, which I like to use when the gel isn't enough.

I also sometimes use salonpas capsacium patches, which you can leave on for 8 hours. They can feel a bit like ripping off a bandaid when you remove them, but if you coast them with oil before removing, it helps a lot (I use olive oil even though it grosses my hubby out to be using food products on skin. Well, at least he's not kinky.).

I also have some flexor patches, which are ibuprofen patches. I didn't find them quite as helpful as the gel, which I also use on my foot (I'm not entirely cured of the Morton's neuroma, the inflamed foot thing i developed this past summer and got a couple shots for).

I also have a TENS unit, which has been really helpful at times.

And a suction cup massage device!

And relaxation CDs.

I'm trying an all-natural pain cream recommended by someone on a discussion list. She got it from (use this discount code at and get $5 off any order: DIT074 )

Anybody else got some good tricks you'd like to share?

fight off colds fast

Whenever I feel a cold coming on, I grab my bottle of Umcka cold care and take it every few hours. Rarely do I have a cold last longer than a few days, now that I've discovered this stuff, which was recommended to me, if I recall correctly, by a worker at Whole Foods. Given that I've got an immune system that is always either suppressed by drugs or busy fighting a civil war with my own body, I find it pretty remarkable that I'm able to keep the common cold from lasting more than a couple days, or even worse, landing me in the hospital or turning into pneumonia. It seems to work by boosting immunity and creating a fever, because I always feel kind of feverish about an hour after taking it.
I've been using this stuff (as needed, a couple times a year) for about 8 years now, totally swear by it. Being cold and flu season, I thought I'd write a post about it, in case it might be of help to someone else.

Wednesday, December 9, 2009

what's illness and what's not

well, here's a real shocker: the shoulder pain i have been attributing to fibro for 17 years is in fact caused by something else: hanging my right arm over a guitar for hours at a time on a regular basis. I'm short (5'2") and your typical guitar is made with someone much taller in mind, so it knocks my frame way out of any remotely ergonomic position and leaves it there for hours at a time nearly every day. Pain is a great motivator, and so for the last couple of weeks I've been quite motivated- to do something about the pain. So i went back to get some acupuncture, something I've gone without for several months. That's when I found out the pain was not from fibro, or lupus, but from bad guitar-playing habits.

Sometimes it's not just the illness, and now I find I neither have to put up with the pain, nor do i have to keep throwing all sorts of pain remedies at it. Nor do i have to go get some cortisone pumped into it. I just need to turn the guitar facedown on my lap when I'm just holding it and yapping, and not actually playing it; and, I need to use a smaller guitar. Meanwhile, the acupuncture appointment broke the cycle of pain, tension, and inflammation.

3 weeks ago I started taking LDN (low dose naltrexone). It has been extremely effective in a couple of clinical trials for lupus patients. In order to go on LDN I had to give up all my narcotic painkillers (I've only had a doctor who would give me narcotics for the last 2 years). I was pretty uncomfortable for a couple weeks, with the shoulder pain- until I got the acupuncture. But meanwhile I had noticed my brain fog had lifted. Now for a while I've been attributing my brain fog to fibro and lupus. Sometimes over the course of 17 years that really has been the cause. Now that it is lifting, I'm not sure if ti's because the LDN is calming down the lupus activity, or just that i have a completely narcotic-free brain for the first time in a while.

About a month ago my insomnia was running wild, so I got a relaxation tape. It seemed to break the cycle of tension and anxiety, and I am now pretty much able to fall asleep without much trouble. In fact I've cut my sleep aid in half in the last few weeks. Which may also have something to do with improved brain function. Was I able to cut it in half because of the LDN or because I broke the anxiety cycle with the tapes? I may never know.

So, the point of this rambling is this: whatever it takes to break the cycle. Just as disease can bring you into a downward spiral where you can't tell whether the pain is because you're depressed or you're depressed because you're in pain (who cares? let's just get things turned around!)- so, too can healing be an upward spiral: I'm in less pain so i sleep better so i need less sleep medication so my brain is clearer. And, I'm more well-rested, therefore I feel better, therefore I am happier, therefore I feel better. And so on.

Thursday, December 3, 2009

Book Synopsis: Model Patient: My LIfe as an Incurable WIseass

Just finished reading Model Patient: My Life as an Incurable Wise-Ass, by Karen Duffy.
This is a memoir, released in 2000, and was a NY Times bestseller.

Karen was something of a celebrity when she developed sarcoidosis, an autoimmune disease that causes hardening of soft tissues. In her case, they discovered a lesion on her spine; her sarcoidosis was a rare form, being sarcoidosis of the central nervous system. She was (and is) a model for Almay, was an MTV VJ, and appeared in Michael Moore's TV Nation and The Awful Truth, and in Dumb and Dumber.

Karen has a fantastic attitude toward life in general- she's got a great sense of humor, and of fun and play, fearlessness, and spontaneity. She was raised devout Catholic, by parents who instilled in her and her siblings the importance of community service. Karen was a recreational therapist in a nursing home when her modeling career took off. She kept that job for as long as she could, juggling both careers until the modeling and acting took up too much time. Later, when very ill she goes back to the nursing home ot volunteer- and helping cheer up others others cheers her up.

Occasionally, her humor and attitudes towards other illnesses comes off as insensitive and flip, like her assumption that "we know what causes" lung cancer (smoking. Actually, not true- a very large percentage of people with lung cancer never smoked) and her list of disease that she thinks are funny like Stiff Person Syndrome and Wandering Spleen- My rule of thumb is to only joke about things I've actually gone through. Making fun of others' maladies, even if you're suffering from something equally weird or embarrassing, is skating on thin ice, like a black guy making Jew jokes or vice versa. Maybe you've both suffered because of your ethnicity, but that doesn't give you permission to joke about the other person's suffering.

I also disagree with her blanket dismissal of all alternative medicine as quackery and her claim that in China they don't even use Chinese Medicine. Were she to look into the history of so-called modern medicine, she'd realize it is only about 150 years old, and that only 150 years ago doctors routinely amputated perfectly good legs and drove drills into skulls, leaving their patients catatonic. She dismisses acupuncture without looking into it, and makes assumptions that the needles will hurt a lot, which in fact they don't. And she makes numerous jokes about enemas, basically holding them up as some kind of running joke about how idiotic people are for trying anything that's not a pill or a shot. She sums up her attitude towards medical treatment in one word: "Compliance." When you have a chronic illness, in my experience, unquestioning compliance can be very dangerous. The kinds of drugs that save your life, like prednisone, can also leave you just as sick from their long-term use. She herself now has been very damaged by both the disease and the treatments, and has acquired morphine addiction. She *has* to have morphine every few hours.

It's not surprising she would go the route of compliance, as this completely jibes with her upbringing and current practice of devout Catholicism, which has an extreme deference to authority. I don't fault her for it, and she seems to be totally OK with her choices, despite the fact that her choices have left her with a morphine addiction and changes in appearance (from the steroids) that caused her to undergo plastic surgery to correct them (something I have considered, if I could afford it- who wants a turkey neck in their 20s?). I just don't agree with the attitude of total unquestioning compliance for myself, and I don't think she should dismiss all other choices as "Quackery" without even looking into them. She even says that everyone has to deal with illness with their own approach that works for them. So I just wish she's show the same respect for other people's choices (and diseases) that she wants for her own.

That being said, it's a funny, colorful, well-written, page-turning memoir, and I'm glad I read it. It's the best "illness memoir" I've read yet. Karen is someone I would love to be friends with, and who I am sure I would admire even more if I actually knew her. She seems truly full of life, both before and after developing this disease.

Overall, this book is a great read and has a lot to offer in terms of dealing emotionally with serious illness. I still haven't finished reading David Lee Roth's or Michael J Fox's autobiographies, and I tore through this one in 3 days, which to me is the mark of a great book- I couldn't put it down!

Sunday, November 22, 2009

The only diet book you'll ever need

Of all the diet books i've read, this one is the most grounded, non-faddish book. it is full of citations (references to research) and matter-of-fact, down-to-earth, solid advice. Dr. Fuhrman researched more than 2,000 studies on diet before writing this book. He is a lifelong athlete and -hard to believe in America- has never had a sip of soda. He really practices whawt he preaches.

Frequently cited is the China study, research on folks in rural china who live very long, healthy lives.

It's becoming clearer all the time that a great deal of the health problems in the US are caused or at the very least aggravated by what we put in our mouths. The good news, then, is that we can reverse a lot of illnesses that modern medicine has "no cure" for by simply changing what we eat.

Of course the problem is, most of us are actually addicted to the very things that are killing us, so it's going to be hard to give those things up. Just like an alcholic, or a smoker, sometimes there's a food monkey on your back.

Dr Fuhrman, after much research, has come up with a simple but effective plan. It can be summed up in one sentence: eat plants, nuts, and beans, and nothing else (and your health will vastly improve, possibly even reversing illness altogether).

It ticked me off at first, but that was because i knew he was right and i didn't want to change my diet yet again. but i am mostly following his suggestions and while I have not seen a sudden reverse trend in my lab tests to the better, i look better- i get lots of compliments lately! and i've lost a few pounds. i've got to get chocolate out of my life, and stop soda altogether (I gave up diet soda 2 years ago, and have 1 or 2 regular sodas a week)- those are my last remaining vices. nothing redeeming in soda, and no one needs chocolate daily, even in small amounts. sigh.

The only shortcoming in this book, in my opinion, and it's a very small shortcoming, is that Dr. Fuhrman never ate junk food, so he has no idea how hard it is to change your evil ways and engrained habits. At first, I thought his book might be better received if he would be less hardcore about it, and let people slowly change their habits. But now I think that would have watered down his message, and that the only way for him to say what he needed to say was to be completely uncompromising.

In a nutshell, best book about diet out there. It's not so much abotu weight loss, but changing your habits for the purpose of improving your health. A lot of people say they want to lose weight "for health reasons" but really, they just want to lose weight without sounding vain. This book tells you how to eat for health reasons and oh by the way you'll probably lose weight.

there is also the book the lupus recovery diet, which suggests a low fat vegan (no animal products) diet. that author worked with the author of eat to live so there is some overlap.

Eat to live is slightly cheaper and has more scientific content. The lupus recovery diet has more patient testimony. Both have recipes.

Thursday, November 5, 2009

To sleep, perchance to heal

I've had insomnia for as along as I can remember. If I didn't need to sleep to heal, I just say "who cares" and stay up all night watching Law and Order reruns, or tackle that mountain of paper in my office that needs filing. Or clean out my sock drawer. Well, that would probably wake up my husband. But I'd just get out of bed and do something productive with the lost sleep time. But I need to sleep to heal, or at least to keep from sliding downhill into a hospital bed.

But once I put that pressure on myself to that *must* sleep, now I have performance anxiety added to the mix- what if i can't sleep? Oh god, there's the paper delivery guy. Oh now I hear the trash trucks. it's getting light outside. crap.

I've been on bunches of sleep meds. Ambien just made my face puffy, still couldn't sleep. Rozaren has great commercials with Abe LIncoln and beavers, but my dreams were still missing me, even with a double dose. Attivan actually works for me, but it erases my memory and makes me tired (how can you tell - lupus makes you tired! OK, even more tired).

A great deal of the reason I can't sleep is that I can't shut off my brain. i worry about stupid crap that probably won't happen, or stupid stuff that already happened and I should have handled better, or stupid stuff that will happen but doesn't matter, or I can't do anything about... or, best of all, i worry about not getting enough sleep, causing me to not be able to fall asleep. Anti-anxiety meds work great for this, but for every drug there is a price to pay, and i don't just mean $, because attivan generic is cheap. Having no short-term memory is actually getting to be a problem. Thankfully, my husband is very trustworthy. Because when people tell me I said on Monday "I'd like to go to a 5-hour play about ringworms this weekend," i just have to take their word for it that I did indeed say that. CLearly it's time to get off the attivan. it's been 3 years.

I started taking it in the hospital when I was almost literally climbing the walls because 1) i hate being in the hospital 2) they pout me on a high dose of prednisone. I was about to check out A.M.A (funny how "American Medical Association" and "Against medical advice" have the same acronym) and they gave me some attivan to calm me down. Meanwhile I already had plans to sneak out that night for dinner with my fiance and my mom so get some real food. I took the attivan first. I remember getting the menu, and I remember signing the hospital log on the way back in as a "visitor" (I signed in as my sister coming to visit myself). The rest I have to take my fiance's word on.

Anyway, it's time to deal with this monster. So i bought this guided imagery cassette (yes a cassette) and listened to it on my walkman (yes a walkman) and listened to it with my pet rock (no, not really) as i lay in bed, and after 4 straight nights of lousy/ no sleep, I finally relaxed and fell asleep. I often use CNN when I can't sleep, but the content on CNN can't possibly be what I really want in my subconscious: political fighting, rape, murder, balloon boy. I need something more healing (which would be just about anything else short of Nightmare on Elm Street).

The cassette was so good I went looking to see if it had been re-released on CD, and it has, so I repurchased it. (Just like the good old days when I bought an album on LP, then cassette, then CD... then mp3). It's called "Health Journeys: A Guided Meditation to Help You with Rheumatoid Arthritis or Lupus" by
Belleruth Naparstek

The meditations are specifically for someone with RA or lupus. it's so nice not to be borrowing something from cancer and trying to adapt it. It is specifically for us, and right on target, and I've used it 4 nights in a row. Not only am I actually falling asleep, it's to something not just non-toxic, but actually healing. I also feel more relaxed during the day.

This same author also has a CD specifically for sleep:

Monday, November 2, 2009

Low Dose Naltrexone

I'd like to be more excited about the announcement of a new drug specifically for lupus called Benlysta. I really would. But it is effective in about 42% of patients, and the placebo worked for 34%. And I am certain, with this being a genetic tweaking kind of drug, it's going to be very expensive. In fact, I'm sure it is, as Glaxo-Smith Kline is aleady referring to it as a "very major" opportunity:

So I'm sorry. I appreciate all the hard work and even more the fact that someone is trying to develop something specifically for lupus.

However in my mind, the next great hope for autoimmune disease is something that has been around for a while and is cheap- and I gotta say after 17 years of dealing with the horrible effects of lupus and the equally horrible effects of the drugs used to treat lupus, I am ready for something else, especially if it is cheap, non-toxic, and doesn't suppress your immune system or screw with your genes.

I had 3 people tell me about LDN (low-dose naltrexone) in the course of a month, so I knew the universe was trying to tell me something! I printed out the info on the website and brought it to my rheumatologist this past Friday. he's supposed to call me Monday after he has a chance to research it and let me know whether he's be willing to prescribe it for me. If he doesn't call em Monday I will call him Tuesday. And id he doesn't prescribe it for me, I will be looking for another doctor.

My inflammation (sed rate) hasn't been below 55 all year, and living with that kind of inflammation is really dangerous. I managed to turn things around back in February and my tests even went negative briefly. But then i was exposed to mold and went into fibromyalgia attacks, then i got a neuroma in my foot form wearing tight shoes, and got rid of that and caught a virus. I'm tired of being so vulnerable!

So here's hoping. I'm hearing great things about this drug, which was developed in high doses to treat addiction. I'm not a fan of drugs in general, but with lupus, we just don't seem to be able to get by or get better without some kind of pharmaceutical assistance, at least during crisis. LDN is not an immune suppressant, nor an immune booster, but an immune modulator- it gets your body to make more endorphins (and who with lupus couldn't use some feel-good substances!) and to stop attacking itself. Really sounds like the right approach.

Right now, as we sit here and stare at our computer screens, there are clinical trials going on in Europe using LDN to treat autoimmune diseases including lupus (SLE). There will probably not be any such trials in the US because the medicine is no longer under patent and therefore not profitable. But it is legal and ethical for doctors to prescribe it, if you can convince them to do so. It's called "off-label use."

I just took my first dose as of 11/16/09. If it is going to be effective for me, I should notice improvement in 1-2 weeks. It tastes gross, but hey, it's only 1 milliliter. Not any worse than prednisone. I'm already gluten and dairy-free, and off opiate pain-killers, so the typical interfering factors are a non-issue. Here's hoping.

To get more in-depth info on LDN, check out the LDN webpage. There are discussion groups you can join.

A doctor talks about the effectiveness of LDN for autoimmune disorders, specifically RA and Systemic Lupus:

update 11/22: not quite a week on the LDN. I've had really uncomfortable fibro pain all week, which actually started before I started taking the LDN, but once you start LDN you can't take narcotics anymore. So, I was left with picking from my basket of old tricks I've used for the first 15 years of this illness, during which no one ever gave me any narcotics unless I was in the hospital. Hubby gave me shoulder rubs, which gets the pain from (scale of 10) from a 10 to, say, a 6. Used capsacium (Salonpas) patches which helped get it down to a 4. Still makes it hard to sleep. Taking Aleve and/ or prescription aspirin, shaves the pain down to a 3, slept propped up for several nights. I have only 2 nights of insomnia, a side effect of LDN for some people.

update 11/29: The pain is still not under control but I do seem to have more energy- I can do more in a day- and my brain fog is nearly gone. For the last year, I've barely been able to finish a sentence without losing my train of thought, and that is not much of a problem this past week.

From what I've seen, it's going to take 1-6 months for the LDN to really turn around the whole autoimmune process, but if it really turns it around and getes my body to stop attacking itself (and does so without side effects and causing weight gain, mood swings, hair loss and serious illnesses such as diabetes and osteoporosis, a la prednisone) then it will have been worth having to give up my sure-fire narcotic pain relief short-term to just not have pain long-term.

update 11/30: i upped my dose from 2.0 to 3.0 tonight. I was in constant pain all weekend, all around my upper body, which I think I've traced to having carried my guitar around in a gig bag on my back both Friday and Saturday. The cold air is also not agreeing with my lungs- my chest feels really tight.

I overheard some guy tonight blabbing about how he lost a bunch of weight by just going jogging twice a week. he seemed to believe that anyone could lose weight that easily. it made me really mad, because he put out so little effort and almost painlessly met his goal. I feel like i make so many changes and sacrifices and sometimes don't see any results, and just have to keep giving up more and more and more things - first no overexertion and no sunshine, then no soda; then, no bread, no lunchmeat, no dairy. And still my numbers are terrible and I'm in constant pain. And now, no painkillers. What's next, no smiling? i shouldn't have to work this hard to feel normal! what the hell went WRONG?! OK, just had to rant for a minute. Makes me crazy when healthy people take their well-being for granted and they can't imagine why everyone else can't just go jogging and have the weight fall off, or lose 2 pounds every morning by peeing, or drink a red bull and power through it all.

Anyhow my current idea about what to do next if the LDN doesn't start showing results ASAP is to do a Candida cleanse (this is strongly encouraged by those who know about LDN)- meaning give up EVEN MORE foods (temporarily), including all sugar, even fruits, take some herbs, and kill off the yeast in my gut. Yeast overgrows if 1) you eat/ drink too much sugar 2) your immune system is compromised by stress or immune suppressants, such as prednisone and cellcept, which i've taken 3) anitbiotics. I did the candida diet both the other times I took prednisone, in 1994 and 2002, but haven't done it since the 2006 hospital stay/ year-long prednisone usage. Dreading the cleanse, feel like I've already sacrificed enough by going vegan and gluten free and giving up diet soda and giving up my narcotics and being in pain for the last 2 weeks, but i absolutely must get to the bottom of this thing, or i'm going to end up even worse off - back on prednisone, moonfaced and hairless, biding my time til my turn on the gurney, lining up to have my bones replaced after the drug eats them away.

update 12/3 (Day 17 on LDN): I'm now taking 4.5 mg a night. well turns out some of that shoulder pain was caused by carrying around the guitar on my back. I know that because that alone has cost me enduring days of shoulder pain before. And also now that my "Aunt Flow" is here, 3 days early , as usual (If she's always early then I guess early is the new "on time" for me), I am starting to get some relief from the pain. Also aided by icy hot, my husband giving me several back rubs, and me doing chi gung, and doing tons of shoulder rolls. I also listen to relaxation tapes when I go to bed, and try to breathe *into* the pain and tightness, instead of breathing shallowly to avoid pain. It's hard for me to measure how anything else is doing in regards to the LDN - the pain kind of swallows up awareness of anything else. I've been staying up til 5am because i can't stand going to bed when I hurt. Turning off all the lights and distractions and lying down and putting weight on my hurting shoulders just magnifies the whole thing 100-fold. But I do seem to be less forgetful and mentally foggy. Once the pain completely dissipates I'll have more perspective on everything else.

update 12/10 (day 24 on LDN): After seeing the acupuncturist last week, I now know that the shoulder pain I've been blaming on lupus and fibro is probably caused by playing guitar. I had a great acup. treatment with needles, TENS unit and cupping. It got rid of 80-90% of the pain. Hubby continues to give me back rubs to keep it under control, and I got another treatment today. Dr Wu (my acupuncturist) asked me for my lab results so she can make a case study of me. She has completely turned around the health of people with lupus before. I'd like to be in that company. Meanwhile I've been able to cut my sleep med in half since starting LDN. Which means I'm less groggy and less brain foggy. I continue to stay gluten-free, vegan, and no aspartame (diet soda, or anything else with nutrasweet). I also added taking liquid vitamin D to the mix, as most Americans have vit D deficiency, and it is linked to autoimmunity. Normally you get your vit D from the sun, and people with lupus have to avoid the sun. So you'd think that we would be ordered to take vit D, wouldn't you? Too obvious?

Also, someone suggested that since LDN is supposed to be taken in sync with your biorhythms, between 9pm and 2am, that we should account for dalylight savings time. So that means to take it between 8pm and 1am. I've set an alarm on my digital watch to make sure I take it before 1am each night (I'm still a nightowl).

When I get better (not if, but when, because I've done it before) it may be hard to trace it to one thing, because I'm doing acupuncture, taking vit D, changed my diet and started LDN. However, I went gluten free 1 year before starting LDN, and gave up nutrasweet 2 years before. I went vegan 2 months before, and before starting LDN, after all those changes, my numbers were not improving. I always need more than just diet. Diet and acupuncture alone would do it, and did it before. But then I got sick as soon as I hit immune challenges (mold exposure, stress). Therefore I'm combining the 2 things that worked before, plus LDN and vit D, in hopes that I'll get better faster and stay better longer. I'm feeling very positive about this path.

update 12/13: shoulder pain is back, kept me up most of the night. used ibuprofen gel, heating pad, suction cup massager, helped long enough to fall asleep, but not all night. I seem to need a massage every few hours. Of course this attack was brought to you courtesy of driving 500 miles and playing 2 shows in the course of 24 hours. Meanwhile (knock on wood) It's been a while since I've had to take anything for a headache and I don't seem to be having pain anywhere else (such as elbows, knees, ankles, fingers, which often swell and hurt when the disease is active). And my, um, bathroom results are back to normal (had a few days of- let's call it "doing number 3").

update 12/20: shoulder pain still bugging me. About every 3rd night I get some deep sleep. other nights, I feel like i never really fall asleep, just because of the pain. So it's still hard to tell how I'm doing otherwise. Just spent 3 days in puerto rico thawing out and swimming (wore my 50 SPF shirt when in the sun; i'm not a fan of sunscreen because of the chemicals, although i have some organic sunscreen that I used on my face and hands). last week i started taking oil of oregano 2-3 times a day to kill off the candida problem, which surfaced last week, a few weeks after starting the LDN- I hear that is not uncommon, and that it can be hard ot make much progress until the candida is under control. Keepin the faith! I got all my tests to go negative (in the positive sense ) last year; I know I can do it again.

update 12/28: shoulder pain, unrelenting. using massage, ibuprofen gel, TENS unit, chi gung, and sleeping on couch where i can prop up so it hurts less. had some headaches and stiff swollen fingers and toes over xmas for 1-2 days. Still taking the anti-candida stuff (oil of oregano). Athlete's foot has resurfaced on left foot, probably connected to the candida resurfacing. Some say the LDN will bring the candida problem to the surface. I now have LDN pills as well as liquid. I prefer the liquid because pills stick in my throat and take a while to get into your system. And the liquid is cheaper if you buy the 50mg pills and dilute it yourself. But I prefer to travel with pills since the liquid has to be refrigerated and i never know if the airport security is going to take away the liquid, leaving me with no medicine for the length of a trip. I am very conscious of that fact that if I want to heal I need to slow down and rest more, do less. The cold weather is not helping matters, so i'm trying to hide indoors as much as possible. Every now and then i'm tempted to take a narcotic but to do so I'd have to quit the LDN and I'm not going to quit it until i see whether it has improved my blood tests. I have to give it a chance to work. Next tests: around Jan. 11.

update: I ended up going off the LDN so I could take percocet for the pain I was in. My LDN experiment was worthwhile, but I can only stay in constant pain for so long . I have heard testimony that LDN has been successful with other lupus patients but I also have uncontrolled fibromyalgia. I'm currently on cymbalta which is controlling it to a degree, but occasionally i have to take a half a percocet. I told several people about LDN. One of them has MS and she improved dramatically. So I do not dismiss it as an effective treatment for some people with autoimmune diseases. A nice cheap non-toxic one at that.

Wednesday, September 23, 2009

Smoothies- good for you?

In an attempt to get more fruit into my diet, I've been making lots of smoothies at home. I know what goes into them when I make them: fruit, ice, and a little rice milk. That's it.
Well, America, do not assume that is what goes into a smoothie at the mall. All smoothies are not created equal. Your mileage will most definitely vary. I was on a long trip, searching daily for something to eat that wasn't bad for me. The Luna bars in my suitcase were the healthiest things I had for 10 days. I went to many places looking for smoothies and nearly all of them were made of 8 ounces of sugar water, some ice, and a few berries. That is not health food. It is one step above Kool-Aid.

I have, however, found 2 chains that serve real honest-to-God smoothies: no added sugar, no corn syrup, just fruit and ice, maybe yogurt if you want it.
They are:
Jamba Juice
Smoothie King

If you're not sure what's in it, ask. Is there anything in it besides fruit and ice? Do you put water in it? If they hold up a gallon jug that looks like tea, that's the 8 ounces of sugar water that has no nutritional value whatsoever. Save yourself $7 and have a candy bar. It's about as (un)healthy. Or look around for a Jamba Juice or Smoothie King.
I am not connected to or paid by either company. Just sharing what I'm learning, in my effort to find good food.

Tuesday, August 25, 2009

Book Synopsis: The Last Lecture

I'm a little behind the curve on reading the latest best-sellers. But then that means I can get them at the library or really cheap used. So, I finally got around to reading The Last Lecture by (the late) Randy Pausch.

If you're like my husband, and unable to read or talk about death, then this book will not be enjoyable for you. But if you're like me, and you've already faced your own mortality, the mentions of death, mortality and illness won't bother you. That's not really what the book is about- it's about living life fully. But to understand why he is giving the lecture, you have to know the circumstances of his life. He had been diagnosed with pancreatic cancer, one of the scariest cancers with the highest mortality rates. He was given months to live. According to his blog, he seems to have lived 2 years after diagnosis, thanks in part to a radical surgery shortly after diagnosis. Randy and his wife had 3 young kids, and he had a career he loved, so he had every reason to live, and this lecture was his attempt to bottle up everything he wanted to tell their kids once they were old enough to understand it. We just get to listen in. The lecture was given live at the university where he worked; they actually had a legacy of "last Lectures," where, strangely enough, professors were asked to give a lecture addressing "What wisdom would we impart to the world if we knew it was our last chance." And the author was asked to speak in the series.

The book is not a transcript of the lecture. It was written afterward, as Randy went on long bike rides and his co-author transcribed the conversation. It's something of a memoir, but Randy tries to squeeze in as many life lessons as possible throughout. The most tangible, practical advice is contained in his time management section. When you haven't got much time to live, you haven't got any to waste, so here's a guy who knows the value of time management. FYI, it is not really about conquering or living with illness.

I found it an easy, uplifting read with some good advice on conducting your life.

Right now I am reading Eat to Live. I actually had lunch at the same table as Dr Fuhrman and his wife yesterday. They live what they preach and are very passionate about nutrition and healing. More on that soon. My progress on that book may be slowed a bit by my intermittent reading of David Leee Roth's autobiography (gotta balance out that Last lecture seriousness somehow, right?)

Thursday, August 20, 2009

What British health care is really like

Here is an e mail from a friend of mine, who is British and has been fighting myeloma for the last year or so. He wanted to et the record straight about government health care in England. (FYI I don't have a direct line of communication to Sarah Palin.)

Dear Carla
You're American - tell that lunatic Sarah Palin to stop peddling lies about our National Health Service! It appears from over here that some rather ugly people are coming out of the woodwork to try and persuade you all that the British NHS is some kind of communist conspiracy that, if adopted in the US will result in bodies lying in the street (I thought that was what happened after Hurricane Katrina thanks to neglected flood defences...) and doctors arbitrarily deciding who lives and dies.

Sure, the NHS isn't perfect, far from it is some respects due to our idiot government's obsession with targets being met to produce good-looking statistics, hence a top-heavy administration full of box-tickers and not enough actual workers like cleaners in some areas. I can't say though that I have anything to complain about after my experiences. While I was cooped up during most of February in the (spotlessly clean) isolation room, I asked one of the nurses what the difference was between the way I was being accomodated and treated and the private patients on another floor. She said they got a compliemntary newspaper and a better view out of the window.

What did you tell me about how much your various drugs had cost you in the last year? I think you mentioned the figure of $7000. Here in April they made cancer drugs free - previously I had been supplied with all my stuff using a card costing about $150 for a year, irrespective of the quantities. Prior to that I had to pay about $12 for each prescription, sometimes three or four a time, so the high use card became the better option, but as I say now no charge at all.

I wonder if Ms Palin gets paid by the drug and insurance companies in cash or with stock options and Mercedes sports cars.

There, I feel better now, having a little rant about these BS merchants!

Hope things are good with you. Best wishes

Monday, August 3, 2009

Book Synopsis: Lupus Novice: Toward Self-Healing

Okay, just got done reading another lupus memoir:

Lupus Novice: Toward Self-Healing
by Laura Chester
original copyright 1987; 3rd edition 1999

How strange that I spent my first 17 years dealing with lupus having no idea that there was even *one* lupus memoir out there, and now in the course of a few weeks, i've read 2. And both books were out there in the world the entire time. Well, there was no internet when I first started my search for answers. And now, thanks to, it's very easy to find a book (or 2 - or 3 - or 10) on just about anything now.

This author's lupus first showed up as discoid (skin) and progressed to involved joints and fatigue. She was married and had children at the time of onset. Her writing is very descriptive, poetic at times. Sometimes I'm a little uncomfortable with the level of personal detail- I feel like I'm reading someone's diary!- but I suppose that's how a memoir is supposed to be written. She is a writer by profession, both before and after the publication of this book. I actually prefer to read memoirs by people who are not professional writers, because it feels more like a conversation and less like a work of art. But maybe I'm just a lazy reader.

Writing style preference aside, this book is intriguing and important. Like the first memoir I read, Heartsearch, this author also searches the depths of her soul for any emotional poisons that may be at the least, inhibiting her healing, or at worst, actually causing her illness.

Like me, Laura resisted prednisone for months, trying various other medications and natural remedies first, until she was worn down into submission.

Laura uses some things I'm familiar with, such as juicing, detoxification, massage, coffee enemas, homeopathy, faith healing, yoga, bach flower remedies, prayer, affirmation, writing, talk therapy (and of course prednisone and placquenil; and stress and sun avoidance), but also some things I've never heard of, despite the fact that they've been around for decades: Certain teas, Eurythmy and anthroposophic healing.

Well it took me 17 years to find her book, so clearly I'm not at the hub of "breaking alternative medicine for lupus news."

Interesting note: both this author and the author of Heartsearch used and benefitted greatly from anthroposophic healing. I'm intrigued!

The anthroposophic approach, pioneered by the late Austrian, Rudolph Steiner, is about soul struggle, and resolving that. Well, who couldn't use that, even if they don't have lupus? It seems to be really hard work, but well worth it, and it seems that if you can lift the burden of inner conflict from yourself, it's much easier to heal physically. Maybe there is some truth to the claim of my friend Rosemarie, who says "All illness starts on an energetic level. By the time it manifests physically, it's a metaphor."

Or maybe a physical illness is just a physical illness and easing yourself of the stress of negative emotions allows you to heal. Maybe the answer lies somewhere in the middle. We do know you can't really separate mind and body. They are intertwined. When you do something good for the body, you feel better emotionally and vice versa.

Back to the memoir: While the author admits that her case of lupus was not as severe as many, she does state in this, the 3rd edition that she has been relatively free of lupus symptoms (except for skin eruptions from overexposure to the sun) and off the meds for 20 years. This is very good news and reason for all of us to hope for and work for a life off the meds and free from the big bad wolf.

I've veered from my stated mission, "Lupus and humor"- If you're looking for humor, read the oldest posts.
I'm just presently on a search for more and deeper answers.

Coming soon: my thoughts on:
Healing Lupus: Steps in a Personal Journey by Waverly Evans
This one is a workbook, so it may take me a while to have any useful comments to offer. But it is important to note that the author also encourages deep emotional work and claims "I do not have lupus anymore." Now that's the kinda news I'm looking to hear.

Sunday, July 26, 2009

Book Synopsis: Heartsearch: Toward Healing Lupus

I stumbled on this book via
Heartsearch: Toward Healing Lupus by Donna Hamil Talman

When I saw the description of the book, I knew I needed to read it, because it tackled a question I've been wondering about ever since my diagnosis: is there a connection between emotions and lupus? Is there a personality profile for a lupus patient (similar to the profile of heart attack victims being type-A overachievers)? Was lupus a metaphor for some specific unresolved emotional conflict?

Since the author is both a lupus patient and a psychotherapist, I was intrigued about what she might have to say, to say the least.
I was sick for 2 years, then diagnosed in 1993. I didn't have internet- was there even a public internet in 2003?- so I spent a lot of time in the library, writing letters, and on the phone. I read a lot of books on body-mind connection, and although this book is copyright 1991, I never found it 'til now. In fact, I think it's out of print, because I had to buy a used copy.

The book has a lot of personal detail in it, almost like reading a diary. The first chapter describes an orgasm in detail. I don't think I would have the courage to write and publish anything so personal. And I imagine some folks are going to be a little shocked by it- but therapists, I'm sure, are accustomed to talking about such things openly.

The author was married and had a young child at the time of falling ill. I can only imagine how much more difficult it must be to go through this with a young active child, though she does a pretty good job describing it. Being married when first getting sick., which I was not, seems to have its own upand downsides, as there is someone there to help, but on the other hand, they must feel like this was not what they signed up for when they got married to a healthy person! All in all, it's a vivid description of what it's like to go through working, being married, raising a child, and dealing with doctors when sick with a confusing illness. If you don't have any idea what it's like before reading the book, you will by the end.

Now, the subject of lupus as metaphor, what intrigued me most into buying the book. What seems to be a common thread among lupus patients, from what I've read in this book, Bernie Seigel's Love Medicine and Miracles, and what I am now reading in Lupus Novice is this: trouble with authority and unmet needs; blocked feelings, long, sadness; and a need for nurturing because of lack of early nurturing (of course a devastating illness is also going to cause a need for nurturing, and dealing with our ridiculous health care system is going to cause problems with authority. But I digress..) If there is a profile, we tend to be rebellious and angry.

The profile for someone with RA was listed, and RA is also chronic and autoimmune; shy, self-conscious, inhibited; martyrs, perfectionists; nervous, moody, tense; unable to express anger; convinced their mothers had rejected them and their fathers were very strict. and the weirdest one: fond of sports. Of course, RA is not lupus, but it's an interesting starting point.

Regardless of finding the exact profile for lupus, which the author eventually decides is less important than pursuing health (I agree- and yet, I still wish someone would find the profile of a lupus patient!) and dealing with unresolved emotions, which is only going to lead to better health for anyone, the author seems to have found a better level of health (though not without a daily "maintenance dose" of the dreaded prednisone) through natural diet, meditation, allowing her self regular self-case such as weekly massages, cutting back on work, taking caution in the sun, writing, and, yes, having released pent-up emotion.

As the author is an academic, sometimes the writing is a little lofty and graphic, but the questions she asks are profound and interesting (I'm so glad to hear someone else voice the same questions!), and she is well-read, which I appreciate. Her journey gives us all some starting points for our own. And I wonder what she's up to now. I googled her named and got a photographer. Think she's moved on to a new profession?

I've got a bunch more books I'm reading and old ones I'm re-reading. I will continue to post synopses of them here.

Saturday, July 18, 2009

illness and emotions: michael jackson and deepak chopra

Maybe some of you saw on the news when Deepak Chopra was claiming that Michael Jackson's lupus was caused by childhood physical abuse. I have to say this statement was reckless and extremely not helpful to the cause of getting the public to take this illness seriously.

On the other hand, I do believe there is *some* emotional component to all disease. Our emotions are affected by our physical well-being and vice versa. And maybe some or even all illnesses are expressions of something hidden, deep and troubling. But it isn't fair to set lupus apart as a disease that is caused by emotional issues while other diseases such as cancer and MS are taken seriously and treated with compassion. Isn't it bad enough to suffer with a painful chronic illness without people throwing unfounded theories about emotional causes at us? Where's the compassion that so many other illnesses are treated with? What if lupus really is just caused by toxic overload from enviromental pollutants and vaccines? I seriously doubt that everyone with lupus was abused as a child. There are 1.5 million of us, and my parents were not perfect but they did not beat me. My troubles started shortly after a bad experience getting my wisdom teeth extracted, and subsequent allergic reaction to the drugs they gave me. Maybe we should blame dentists for all cases of lupus. Sigh.

Anyway, angry as I am about Chopra's statement- here we are, finally in the news spotlight and *this* is what is said!!!- I do entertain the idea that there are underlying *contributing factors* to disease. Louise Hay says the emotional contributors to all disease are anger and fear. Well, that at least gives me something I can work on. Everyone can benefit from letting go of anger and fear, both of which are toxic.

I had a friend who was very angry over the death of a friend of his, and he blamed the doctor. It was all he thought about, every day. He died a year later at 36 of a tumor wrapped around his heart. Symbolic, yes. A fine example of emotions manifesting physically. But we all had enough class not to sit there and say it to his face while he was suffering.

We can't single out lupus and say it's entirely caused by emotions and all the other diseases are "real" diseases caused by "real" things like germs and genes and viruses. I'm tired of being the redheaded stepchild of illness. It's real, Mr Chopra. Yes, there are emotional factors, just as there are with every single disease ever diagnosed. Anger and fear are bad for everyone. So is telling them their problem isn't real. Now I've got more anger to go deal with...

Wednesday, July 15, 2009

finding a good doctor

One of my friends just asked me how you find a good doctor.

First, i'd suggest checking out a DO (osteopath). they have all the training of an MD but they don't go through the "hazing" of internship, so they're still human. they also are more open to alternative medicine and self-care, not just ramming pills down your throat and sending you for a million tests.

Many M.D.s started out kind, curious and idealistic. then the system squashed and dehumanized them (ever see the movie patch adams?) so that, as in every cycle of abuse, they pass it on- to us, the patients, the vulnerable powerless group. the only cure is love, to love them even tho they are wrong.

Sometimes i feel singled out. even tho i know they treat everyone that rudely, somehow that doesn't make me feel any better knowing.

If you are stuck with the doc you have you can always try to make him/ her more human. Suggestions from bernie seigel and patch adams (both doctors) about how to get better care form your doc include hugging your doctor, looking at them compassionately, bringing them cookies or some other token of friendship, or act as you would if you were trying to get someone to like you.

it's ridiculous, but we as patients have to give the lvoe first if we want ot get it. being a dr right now really sucks
the pressure they are under and the BS they have ot deal with sucks the joy right out of their calling. it's no excuse for being rude or abusive, but it does help to remember that when dealing with someone who is only marginally offensive

you may find you like a cash-only doctor. Find one at one of these websites:

ultimately, the best thing is word of mouth- ask around to people who live near you for someone who is still human.

Thursday, July 9, 2009

Did Michael jackson have lupus?

If michael jackson had lupus, he would have to hide it in order to be able to keep working. that's how show biz works. you can't get anyone to insure your tour if you might end up sick and cancel because of a rpe-existing condition. so if i were him and wanted to keep open the option of working, i would hide the fact that i had lupus. also, lupus is so misunderstood that i imagine he did not want to have to be the poster child for it and have ot educate everyone on this misunderstood disease. he had enough crap swirling around him as it was.

lupus would explain everything- the umbrellas shielding him from the sun, the autoimmune skin disease, the need for pain killers and other drugs. And the cardiac arrest. Most people who die from lupus die of cardiac arrest.

some say that anna nicole smith had lupus, and that she hid it because she didn't want to be remembered that way.
very few celebs come out and admit to a chronic illness. lots of them come out and talk about cancer, because cancer has had a great public campaign of awareness and no stigma attached to it anymore. also, it's something that happens, then you get better. the chronic illness... is chronic.

Thursday, July 2, 2009

healthy (and not) sunscreens

Folks with lupus are warned to avoid the sun.
Sometimes we can't completely avoid it, so we use sunscreen. But some sunscreens are filled with nasty chemicals that are really bad for us. Here's a great resource for finding a healthy sunscreen:

Tuesday, June 30, 2009


I just signed up to take a class at the PIT (horrible sounding name! but it stands for People's Improv Theater). It's a class on writing one-(wo)man shows. I've had this yen for bout 5 years now, and keep trying to squash that little voice. But I'm going to go take the class, because if you don't learn anything else from having a stroke and kidney failure, you learn that you only live once. And I'm in good enough shape to get over my New-York-city-o-phobia to go take the class. 9 times.

I remember seeing Dead Poet's Society (movie) shortly after recovering from my first horrible bout with the big L. Thats was 15 years ago, but I remember Carpe Diem! Seize the day! And that the main character killed himself because his father would not allow him to pursue his dreams.

In Bernie Seigel's book, Love Medicine and Miracles, he asks all his patients what their lives were like for the one year before they got sick. In my life, I had squashed myself down into a life I hated- a job I hated, a church where I didn't fit in in a town I didn't like, and living in a trailer park where one of my neighbors broke in on my just a week after I moved in. While I was there. Sleeping. (He's in jail, last I knew). Is this a recipe for health? (That's rhetorical). My family moved me back home to my hometown. I got a fresh start. When I started to regain my strength, I decided to rebuild my life from scratch, but on purpose this time, architecting a life that was worth living.

Will that save me from ever getting sick again? No. But my life is worth living now.

I've bought about 6 copies of this book over the years. it was life-changing for me:

Thursday, June 18, 2009

Gluten-free pizza!!!

hey you gluten-free pizza lovers!
I just got back from Uno's Chicago grill, where I had my first pizza in a restaurant since going gluten-free last fall.
Uno's is a national chain and they are doing gluten-free pizza right- they take it very seriously. The chef has to change gloves before working with the gluten-free ingredients; the sauces and other toppings for the gluten-free pizza is kept entirely separate from the toppings for the regular pizzas, and the manager personally brings the gluten-free pizza to the table. With all that care, once it arrived, I felt like i was getting the Hope Diamond.

Since going gluten-free, I've been restricting myself when eating out to either eating Japanese food- and i have to bring my own gluten-free soy sauce (most soy sauce has wheat in it for some reason) or mexican food (but not burritos or quesadillas- only tostadas, tacos, rice and beans and corn chips). I also go to Charlie Brown's steakhouse (they're like wildflowers in new jersey)- they have a great salad bar and delicious salmon.

But now I can have pizza. So can you and all your friends with celiac disease or other gluten sensitivities!

Not only that, it gives me another national chain I can search for when traveling.
Thanks, Uno's, for doing this, and doing it right.

Monday, June 8, 2009

stresssssssss (and lupus)

just got back from the doctor. sed rate=66, temp= 99.8. :(
my strict vegan + gluten free diet is not enough to counteract all the stress.
stress? what stress? Well, I got tons of work in March, plus I filed for bankruptcy, which really freaked me out, plus I'm writing a book, plus my mom sent me 20 boxes of moldy crap that I've left in their basement since having a stroke 7 years ago, which sent me into a fibro attack. I recovered from that only to end up with either morton's neuroma or plantar fasciitis (constant excruciating foot pain- unless i don't ever put any weight on my foot whatsoever, even to get up to go to the can). I went on "vacation"- meaning, we drove 2500 miles round trip, it rained the entire trip and i was in constant foot pain. While on "vacation" I went to a foot doc and he gave me vicodin. All it did was make me sleepy. My foot was still killing me. I finally go some acupuncture and aspirin and it's doing much better, but now I'm freaked out over the string of lupus-ish symptoms- fibro, swelling joints, foot pain, positive lupus lab results... Smells like i'm sliding back downhill towards either a hospital stay (NO!!!!) or prednisone (NO!!!!).

Sometimes I wish I were an "earthling" and I could just have a beer (not an option) or go for a jog (not an option) to blow off some steam and de-stress. Or drink a ton of coffee (not an option) and just power through the stress (not an option). The fact is, once you've got an autoimmune condition/ tendency, you have to make hard choices every day. One of my friends a while back suggested we go shopping and have dinner in the evening, and maybe earlier that day we could go do something else. I had to explain - to both her and myself- that i can only do one big thing a day. If I schedule 2, I might survive them both, but there won't be enough of me left to enjoy the second one. And it will ruin me for my one big thing the next day.

If I pace myself, and do only one big thing a day, I could very well end up doing 365 really neat things in a year. Well, maybe only 300, because sometimes my one big thing is laundry. Still, 300 neat things in a year is pretty great- barbecues with friends, going to the arcade, doinga comedy open mic. But if I don't pace myself, I can end up wasting a lot of time flat on my back in bed watching reruns, staring out the window, and popping pills to kill the pain.

The good part about knowing you have limited resources is (hopefully) you don't squander them on stupid stuff. One of my friends is raising 2 kids (he's a stay-at-home Dad and his wife has a corporate job). At night, he pursues his dream of being a songwriter. Well, being a husband and dad, he can't be gone all night every night, and he's busy all day with the kids- so he has to choose his opportunities wisely. And he tells me this helps him make better choices about the gigs he takes and how he spends his allotted "songwriter" time. It's not just those of us with serious illness having to make hard choices. And given the choice, like everyone else, if I could swap lives with my friend I would not. I've got some skills for dealing with the "devil I know" and would be overwhelmed if I had to learn an entire new set.

I can deal with this. I just need to vent sometimes.

i was able to talk my rheum out of putting me back on prednisone (for now) (I'm just not ready to lose my looks and my locks a 4th time if there's a way around it) and just get some fancy aspirin and topical anti inflammatory. but i'm going to have to start getting lots of acupuncture and learn to handle stress better or I'll be in for hospital stay/ prednisone hell #4. stress is the worst thing for autoimmunity, and stressing about autoimmunity is the strangest irony i can name at the moment...

Wednesday, May 27, 2009

neuroma, my foot!

Something is very wrong with my left foot.
And I think it has to do with wearing cheap crappy tennis shoes with no arch support.
I've either got plantar fasciitis or Morton's neuroma. either way, it means inflammation and constant pain in the bottom of my left foot- the ball of my foot and my toes, including under the nails.
I gotta say, when the feet ain't happy, ain't nobody happy.

This usually happens to women who wear high heels. I don't, but I did recently get a pair of sneakers that look extremely cool but don't quite fit my left foot correctly, and don't have any support for my high arches. But they look cool...

I went to the podiatrist, who gave me some stretching exercises and suggested icing it as well. And gave me some vicodin Rx, which barely touched the pain. The ice helped a little, temporarily. But the minute i stepped on my foot, even for a second, i was in pain for the next couple hours, until about a half hour after i got off it and elevated it.

Notice I said that in past tense. I finally got some relief today, after going to the acupuncturist and then on the way home buying some aspirin. I needed something anti-inflammatory and the MD i had gone to before didn't want to give me predisone, since it might disrupt my lab tests and ongoing treatment of my autoimmune stuff. and I'm not supposed to take ibuprofen because of my history of kidney troubles.

Well it's easy to get stuck in problem-oriented thinking. Especially hen all my facebook friends are telling me they had these same problems for weeks, months, even a year. But finally it occurred to me that aspirin was not forbidden for me. So I got some relief tonight from acupuncture and aspirin, after almost 2 solid weeks of constant pain. My hubby also went out and bought me some fancy Superfeet shoe inserts from eastern mountain sports (at the suggestion of a couple facebook friends).

And at least for now (until I'm foolish enough to forget), I resolve that cheap shoes (and shoes that make me look cheap- e.g., high heels) are not worth the price. My inserts, which cost more than my "cool" sneakers, are now in my old "uncool" sneakers. And my cool sneakers still look really cool- in the trash can.

health revolution

Here's a great petition for getting health care back to what it ought to be, in my opinion.

Wednesday, February 18, 2009

The Sin of Gluten-y

Just before New Year's I went back on the gluten-free dairy free (GFCF) diet. I'm making great progress with regaining my health. I have almost no headaches anymore- didn't even get my pain meds refilled last time.

I'm also doing Chi Gong, which is somewhat similar to Tai Chi. It is a healing art, adn you don't need to be strong or young or even flexible to do it.

So when I posted on facebook the other day that I was making a tasty batch of gluten-free dairy-free bread in my bread machine, i got lots of questions about gluten - what is it, why am i not eating it, should they stop eating it, and what's my recipe for bread.

My recipe is to buy a bag of Bob's red mill bread mix (available in many grocery stores in the organic food section or at ), add rice milk instead of milk and olive oil instead of butter, put it in the machine and wait 3 hours for extremely tasty bread. So much easier (and tastier) than when i went gluten free in 1994!

Many people assume I have celiac disease when I mention I'm eating a gluten-free diet. I do not feel obligated to tell them that I have a lupus diagnosis, and I prefer not to mention that diagnosis, esp. since my blood tests now say otherwise. So I just say (because I think words matter),"No I don't have celiac, but i have a history of other autoimmune problems, and this helps prevent a recurrence." It's not that I think I'm cured, I just believe that I am free from disease at this moment and i want to stay that way- and I know I have to be vigilant in order to stay that way. Not just in what I eat, how I manage stress, but also what I say.

But the interesting thing is Celiac is *also* an autoimmune disease! And according to the book "Alternative medicine" (future medicine pub.) 100% of lupus patients have food allergies.

As to why I chose the gluten free/ dairy free diet, it was originally suggested to me by an MD (who is a pretty progressive guy, is into nutrition and chelation therapy and other stuff that other doctors would give him a hard time for). I had a food allergy blood test and i did come up sensitive to wheat- and cheeses and milk. Other practitioners have since brought it up (after I fell off the wagon). I've done it 3 times now, about a year the first and second times, and it really works. My energy returns, my face clears up, my headaches disappear and other symptoms improve as well.

So if you're intrigued and wondering whether you might have a gluten sensitivity, and therefore could improve your health b y eliminating gluten from your diet, here's an article to check out:

and here's Bob's wonderful bread mix:

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"

Tuesday, February 17, 2009

Rocky Steps

One of the important parts of recovery is to celebrate every milestone. So even though it was a week after the event, today we celebrated my fabulous blood tests by going to Philly to run the Rocky Steps! I made it- i ran (well, jogged, but i didn't walk!) all 96 steps, not once but *twice*! whew!

It was a beautiful day and we got some pictures and even some video (the video is going to take a little while to retrieve from the cameras onto the computer and compile).
I feel I'm slowing reclaiming all my old superpowers of my youth. I look forward to going back to the steps someday later this year and running them two at a time. Maybe I'll even think of something else I want to do to mark the next milestone in health.

My milestones were much smaller after I had the stroke- I couldn't have dreamed of running stairs. in fact, at one point I was trapped in the house I was staying in because I couldn't get up and down the one stair that led to the outside world. I had people take pictures of me then, because I knew if I didn't, no one who hadn't witnessed it themselves would believe I had ever been so sick. I was so sure I would get well and look and feel good again that people would not believe I was ever so ill.

So back then, I would celebrate my victories like being able to wear shoes again, or seeing improvements in blood tests, or being able to get up and down the one stair and go outside by going swimming in the pool out back, or going to the beach with a friend, or going to the thrift shop (Florida's thrift shops are just amazing), or going to a concert.

I've got a great book I've been enjoying put together by a reporter and a photographer who spent a year interviewing people running the Rocky steps to celebrate various occasions, like recovering from cancer, or getting married:

Sunday, February 8, 2009

What I Learned at the Conference

I spent several days in baltimore this past week attending a conference called "Thinking Outside the Box"- about re-designing health care. The conference was a joint project between School for Designing Society and Gesundheit! Institute, which is the brainchild of Patch Adams (remember the movie starring Robin Williams? This is the actual guy.) Yes, I met Patch, yes he's sincere, extremely bright, thoughtful, and well-read, and yes I got to speak directly to him about my questions and concerns. But that is not why I went.

I had a fuzzy agenda as to why I was attending this conference. I do not work in health care- I hang out in health care a lot (as a patient) and am acutely aware of the system's many shortcomings. I think I came because I got tired of pointing out its flaws and I wanted to hear people talk about solutions. Here is what I learned:

- there is plenty of pain to go around. Not only are the patients suffering, the doctors, nurses, and administrators are all suffering from an abusive, oppressive system that sucks the meaning and joy out of their life's calling. The health care providers are just as frustrated as the patients are.

- there is also plenty of creativity to go around, and lots of ideas. there is more than one solution out there. Doctors can leave and start their own practice. We could have community hospitals. (Could my community hijack our nearby hospital and fix it the way the folks at Nettlehorst took over their public school? I wonder! Maybe there's an opportunity to grab one of those abandoned hospitals in New Orleans and build it in the image of a real community hospital.)

-There are things patients can do to improve their own health care experience and to reach through the cloud of insanity and build a relationship with the doctor: do something silly to grab their attention, hug them, ask them how they're doing, bring them cookies, compliment them, or do whatever you would do in order to get anyone to like you, white lab coat or not. Further, instead of assuming everyone is a jerk until proven otherwise, it is just as accurate but more constructive (and compassionate) to say everyone is lonely and hurting until proven otherwise.

-Single-payer health care (universal care provided by the government) would not only be more humane, it would actually be far less expensive than what we have now. It's not an option to just not pay for some people, because we're already paying- only it costs more because they wait until it's a crisis (therefore expensive) to seek treatment.
The humane thing is also the economical thing to do.

-there were so many amazing souls at this gathering that there wasn't time to hear from every one of them. People who care deeply and are passionate about making a difference. It's good to know you're not alone.

-If you're parking in Baltimore, bring lots of quarters. :)

Friday, January 30, 2009

Test results back: No More Lupus!

I just got back from the rheumatologist and my tests for lupus all came back NEGATIVE! Negative ANA and Negative for double-stranded DNA. I'm not sure they've ever been negative in the 16 years since diagnosis.

If my doctor was a jerk, he might have said I’d been misdiagnosed and never had lupus in the first place. It’s hard to say that in the face of my having had pretty much every lupus symptom a person can have- and yet there are many doctors who do this.

The idea that someone can test negative after years of testing positive- or that someone can get completely better from a disease that in their minds has no cure- it just rocks their world. So, many doctors just decide to negate your entire experience – both the pain and suffering and the hard work you did to get better- by saying you never had lupus in the first place.

Thankfully my doctor is not one of those folks and his pen was actually moving while I babbled about Chi Gung and the gluten-free dairy-free diet. And this is how we start a health revolution: taking care of ourselves, and letting doctors know when we find a non-drug therapy that works. Doctors get information from drug reps and patients. We may not feel like it sometimes, but we are just as important as those drug reps.

If enough people start mentioning Chi Gung or gluten free diets, or any other effective alternative treatments, doctors will start taking it seriously and suggesting it to their patients. And patients will start taking back control of their health. That alone is a revolutionary act, which will lead to a better sense of well-being and hope. Those patients will fare better, thus raising the doctors’ eyebrows again about these methods of self-care that we can use to supplement whatever they prescribe, and he/she will open their minds even more to the idea of using complementary medicine.

I just called a friend of mine to tell her my tests came back negative. She and I were hanging out just a couple weeks ago and I was telling her “My tests are going to come back negative for lupus and some doctor is going to claim that I was misdiagnosed, even though I’ve been diagnosed by probably 20 different doctors by now, tested positive consistently for 16 years, and been through every lupus symptom in the book. And it’s going to make me mad, but in the end, the important thing is I’m recovered from the illness and I know the truth in my heart.” I also have the truth in my reams of lab results.

The biggest leaps in my recovery this time have come since quitting drinking diet soda, starting Chi Gung, and going on the gluten-free/ diary-free diet. The final piece of the puzzle was my declaring and steadfastly believing that I would get the lab results to say “NEGATIVE” for lupus, and they did exactly that today.

How to celebrate? I joked to my husband that we should go out for gluten and diet coke. I thought his face was going to shatter to pieces with all the contortions it was going into. Nope, I’m not going back to my old ways- I’m moving forward, and I can’t think of a better way to celebrate being strong and healthy than to go to Philly and run the Rocky steps! Today, the great lab test results- tomorrow, the world!

Sunday, January 25, 2009

Where in the World is Carla?

Hey everybody!
I haven't posted for a while, as my focus has been completely on my new project: writing a book!

i got a book deal with a small press right after my last post (Fixodent and forget it). The book is set to come out in june. i imagine it'll be a paperback and a reasonable price. that's what i'm shooting for anyhow.

it's a book of humorous essays on illness, hospitals, doctors, drugs, and getting better. the book has some of the same topics as the blog, but it's going to be far more organized. and it won't have nearly as many typos and run-on sentences as my blog. but i promise to keep it sassy.

it's due this week!
i may be just a little late on the deadline because i have to just have the sense to stop when i'm exhausted. no need to create another volume of hospital stories by having another escapade with lupus. i don't deserve that much fun ;)
besides, after 3 times around with this thing, i think i have enough hospital horror stories.

i'll be tapping away on ym computer tonight, tomorrow, and beyond.
meanwhile, i've gone back to doing a little guitar teaching to keep some money coming in. i'm good at it, i enjoy it, and i'm glad to be back to it. i stopped when i moved to new jersey (you lose your students when you move...) and i just spent all my time on the road performing, which is a good way to run down you health.

if any of you have XM radio, check out all the great programs on the Oprah channel, XM 156. wow. so inspiring. i listen jsut about every day, usually to Dr Oz's show. if he were my doctor, i'd have a much higher opinion of the medical community.

well i better sign off for now. just wanted to jot something here so you'd know that no news was good news. i'm well, i'm taking my pills and vitamins, i'm going to the gym, and life is good!