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Click here to go to "Lupus, Humor and Wellness" blog, usually updated with a new post about twice a week.

http://www.lupusandhumor.blogspot.com/

Gluten? Whatever it is, it must be awful tasty, because when you take it out, you find yourself thinking "Where's the taste?" And texture? Fuggedaboutit. I've been eating a gluten-free diet for two and a half years. I'm a lousy cook to begin with- I have literally burned a pot of water, set both the oven and the stove on fire (not on the same day)- I've even ruined jello instant pudding. My disaster-in-the-kitchen track record is bad enough without the restriction of "no wheat"- and not just "no wheat," but nothing allowed with any trace of wheat. Now we've got a "recipe" for a long string of unappetizing meals.
An interview with humorous author and songwriter Carla Ulbrich, a.k.a The Singing Patient, about her new book “How Can You NOT Laugh at a Time Like This: Reclaim Your Health with Humor, Creativity and Grit” What does the title “How Can You NOT Laugh at a Time Like This” mean to you? CU: To me, it means when things are really bad and you just can’t take it anymore, you’re either going to cry, strangle somebody, or laugh. And if you’re sick, then you’re too weak to strangle anyone. And laughing is so much more fun than crying.
When you're feeling lousy, it can be hard to do something like get up and ask for - or even look for- help. I have been there. But things can get better. However, things do not usually get better all by themselves. It takes some work. But it really can get a whole lot better. It has for me. I was so sick I had a stroke and kidney failure, congestive heart failure, anemia, the whole schmear. Fast forward to today: I am now married, got my hair back, kept my kidneys (they are functioning normally), got full function of my hand back, and I'm happy. I work out, teach guitar, wrote a book, I travel, I perform comedy-music shows, I go out and have fun with friends. I can even get an "A" on dance dance revolution. In fact, sometimes I'm doing so well, my lab tests turn up completely normal. You would never know I had lupus if I weren't sitting here typing about it. I'm only at about 90%, but heck that's better than a lot of my so-called healthy friends.
"I just want to be normal." There are a few times in life that make us say that. For example: 1) being in Junior high school 2) lying around in pain after being diagnosed with something chronic and incurable. Junior high school aside, I never wanted to be normal. Exceptional, yes. Strange and wacky, definitely. Outstanding, indeed. Memorable, talented, funny, smart, anything but normal. Up until I got sick. Then, suddenly, "normal" started looking pretty good.
Everyone's abuzz about Christina Aguilera screwing up the national anthem at the superbowl. From what I can tell, all she did was grab a phrase from one line and sing it too early in the song. Haven't we *all* done that? All us performers anyway. That's nothing. I'll tell you how to screw up the Star Spangled Banner. - Start too high, get to a part where you can't hit the high note, and start over. Repeatedly. - When you're done, grab your crotch and spit (Roseanne Barr). - start stuttering and laughing (although in the case of a disabled person, this actually brought out the best in the crowd- but if you're not disabled, it might not work).
What does being diagnosed with a serious disease mean to you? This is a really interesting question, and oddly, one no doctor has ever asked me. Talk about a great open-ended question. If you're at a cocktail party and want to get someone else to handle the bulk of the talking (specifically someone who has been diagnosed with something serious at some point in life), this question will let you off the hook for a good half hour. Come to think of it, I guess that explains why doctors don't ask that question.
Many of you have probably already heard about the idea of affirmations. Lots of folks suggest using affirmations as a way to create change in your life, whether it be improving your health, your relationships, your financial position, your weight, stopping a habit such as smoking, etc.
Giffords "absolutely could hear everything we were saying," Gillibrand said. "And Debbie (Wasserman Schultz, D-Florida) and I were telling her how much she was inspiring the nation with her courage, her strength, and we were talking about the things we wanted to do as soon as she was better." Gillibrand mentioned having another night out with Giffords and her husband for beer and pizza. And Wasserman Schultz recounted telling her, "Come on, you've got to get better, because we expect you up in New Hampshire this summer" at Wasserman Schultz's vacation home.
As some of you know, I've been writing a book during the course of the past year. It's a collection of humorous essays about dealing with illness- and health care. My publisher asked me do a little writing about writing, so I'm sharing this with you all here as well (then maybe I'll sing some of my songs about singing and talk about talking while walking to the treadmill): I write usually when I get up, while my mind is fresh, or late at night, when the whole neighborhood is quiet. I’m usually teaching guitar lessons in the afternoon. My next-door neighbors have lots of keg parties, so I don’t even bother trying to write on weekend nights. I don’t deal well with noise distractions. There’s nothing I can do about that stupid leafblower that shows up every Tuesday for five hours. My husband is far more cooperative. Sometimes when he’s listening to music, I gently offer him a pair of headphones. Or if he’s playing the guitar, I suggest maybe my office upstairs might be more comfortable for him. He always obliges. every couple hours i have to get off the chair before my butt molds into the shape of the chair. i find doing something really mundane, like sweeping the sidewalk, helps me clear my head and even sort out something i might have been stuck on. Julia Cameron (the artist’s way) refers to these kinds of repetitive “mindless” tasks (mowing the lawn, taking a walk, sweeping, taking a shower, washing dishes) as “artist brain” activities- they occupy your left brain, the side where the critic lives, enough to allow the right brain to work uninhibited. i don’t like to work in clutter, so sometimes part of my procrastination ritual is cleaning. Just the clutter. I leave the sweeping for later, to placate my right brain. Why aren’t I using my office to write? Too messy. Plus, if I go downstairs to get a snack, I might not remember to come back up. I pushed a couple card tables together in the kitchen and put a big piece of plywood and a tablecloth over them and took it over. There’s room for the laptop, the manuscript, my scraps of paper, my pens, liquid paper, and a big glass of green tea. And a couple squares of chocolate. All my projects are chocolate-fueled. My absolute favorite place to write is on an airplane. You’re trapped and there is nothing else to do. That’s a pretty expensive office, so I only write on the plane when I’m already going on a trip. As far as time goes, I try to take a somewhat disciplined approach to writing. if I only wrote when the muse struck, I wouldn’t get much done. And I find when doing a large project, like a book (as opposed to writing a song or a blog entry), I need to work in one large block of time so I don’t repeat myself. I use my iCal program, and every month I block out writing time for almost every day. Some days it’s just an hour, other days 3-4 hours. As far as planning what I’m going to say, I have a very undisciplined approach. I try to write from a place of deep honesty, as much honesty as I can muster. I don’t want to sound contrived or academic, or preachy. I still have my papers from high school to remind me I’m capable of that. So, for that reason, I don’t plan out the book in advance. I like to let it reveal itself to me as I write. I basically splat my feelings all over the page, then try to mold them into something slightly less maniacal later. Sometimes you don’t know what you have to say until you start saying it, so I like to allow myself the chance at the beginning to say anything and everything I need to say. Keep in mind, however, this is my first book, and not only are the reviews not out yet, the book isn't even out yet. So judge for yourself whether this approach to writing is really one you want to follow. It seems to work for songs, but, aside from Freebird, Stairway to Heaven, and American Pie, songs are a lot shorter than books.
I used to think if i just didn't eat wheat, I was gluten free. Then I found out I needed to avoid oats, barley and rye. Anyhow a lot of breads that say "rye" are wheat plus rye. Then I started learning how many places wheat and gluten are hidden- soy sauce, shampoo (!), envelope glue, other sauces, whipped cream, oy! Here I was having given up so many foods I love (pizza, pasta, birthday and wedding cake, sandwiches) and I was still eating gluten and not even knowing it.
On a recommendation from my cousin's wife, I got a copy of G-free Diet (by Elizabeth Hasselbeck). I'm not necessarily a fan of her in particular, but this is a great book. She explains what gluten is, the difference between celiac disease and gluten intolerance, and all the places gluten hides (including caramel coloring and the glue on envelopes! Maybe that's what poisoned George Castanza's fiancee on that episode of Seinfeld...). If you've got an autoimmune disease (lupus, RA, MS, Raynaud's. Sjogrens' etc.), it's worth trying a gluten free diet for a few weeks to see if your symptoms subside. I've been gluten free for over 2 years and I'm doing well. I'm not on any immune suppressants, my kidneys are back to normal, no pleurisy (water on lungs), no joint pain or fevers. Gluten free is only one of the things i'm doing, but it is the one that takes the most vigilance. This is a great book, easy to read and thorough.
A great article on the dangers of nutrasweet: http://www.libertynewsonline.com/article_301_29757.php
5-minute stress busters: Make a gratitude list Ask yourself: What went right today? Stretch your neck and legs Go for a brisk walk Deep breathing (breathe in for 4, out for 4, or longer if you can) Have a Rescue Remedy candy (or gum, or 3-5 drops in water) Brew a cup of herbal tea Write in your journal Play with the dog Visualize your desired outcome Do some tai chi or chi gung (really, my chi gung routine lasts 5 minutes!) Scan your body for tension and relax those muscles Punch a pillow! Meditate Listen to music Sing Affirmations (positive self-talk) Close your eyes and imagine you are in your favorite vacation spot (not when you’re driving...) Listen to a relaxation tape (again, not when you’re driving...) Books on managing stress: The SuperStress Solution Getting Things Done
OK, so I promised an update after I finished my liquid fast. I fasted for 5 days, drinking only Vega powder and rice milk. The first couple days were hard- seeing food anywhere, on TV or in real life was tough, but after that it was no big deal. And I was amazed how much more time there is in the day when you're not cooking, shopping, and doing dishes. Ironically, though, here you are with more time, so hypothetically you could finally catch up on somethings, but you're supposed to REST. So that's mostly what I did, read books, chill out, do a little light housework and office stuff, cleaned my desk off. Day 1 and 2, I was feverish and had a headache. The headache I'm sure was caffeine withdrawal. Day 3, I was nauseous and even threw up. Day 4 I sneezed all day. Day 5 I had a pain in my side, which I realized the following day was PMS (TMI?). Day 5 I broke the fast in the evening with sweet potato soup and a few rice crackers. The next day we went out for sushi, and here's where things get interesting, when you start adding back foods. This is a great opportunity to realize which foods are culprits. Now remember I always bring my own soy sauce (Bragg's Amino acids) because regular soy sauce is *not* gluten-free. Some caramel coloring has gluten as well, so I don't even drink coca-cola anymore, just seltzer. I had a philly roll and an avocado roll, and I paid for it the next day. Which was it? Well, then I recalled the same- uh- bathroom symptoms from when I lived in Florida and ate an avocado every day, and had those symptoms every day. OK, so this fast did several things: gave me some rest, detoxed me, and taught me I shouldn't be eating avocados. I probably won't ever know if it reduced my inflammation because on day 6 (the day I started eating again for real), I got rear-ended in a car accident, and I'm pretty sure that will raise my inflammation for a while. My main goal in this fast was to reduce inflammation, but because I did not get my blood drawn in that tiny window of time between fasting and getting in a car accident, we can't know how effective the fast was towards that end. However, I can say that I was in no pain by day 2 (other than the nausea, but the usual tendinitis pain was completely gone), and that pain has not returned. I have some stiffness in my neck from the accident, but it is a different pain and will pass.
Love Simple is an indie film about an unusual love story. Two twenty-something people in Brooklyn, NY who fall in love with each other, but then lie to each other about their lives because they are both afraid no one will accept them if they know their circumstances. Totally plausible, and something I can relate to firsthand. Her secret is her diagnosis of lupus. He is also keeping secrets, but that's about all I want to reveal of the plot, because I hate it when people spoil movies.
One would hope that the announcement that Toni Braxton has lupus would help bring some much-needed attention and compassion for the disease. Instead, below we get comments like this (note: Toni Braxton filed for bankruptcy with debts of $50 million- admittedly, a sum I cannot fathom, but a separate issue altogether form illness):
... when I said I would do *anything* to get better. Just when you think you've done it all: acupuncture, bodytalk, lympahtic massage, regular massage, physical therapy, chelation therapy, biological dentistry, craniosacral therapy, psychotherapy, bioelectronic feedback, coffee enemas, gluten-free diet, vegan diet, candida diet, no artificial sweeteners, journalling, career change... I am nothing if not willing! And most of it has made a difference. I just had my rheumatologist appointment Monday. My blood pressure is back to its old happy self, 90/60, so i'm hoping now I can look towards getting off the BP med, my last remaining pharmaceutical (not counting the aleve i take for tendinitis, which I also hope to stop taking soon). We're cutting the BP med dose from 60mg to 30mg, and I will monitor my BP daily to make sure it stays in the normal range. So that's great news, but what I was annoyed by the fact that my inflammation (sed rate) is even higher than it was last time. it's at 84 now, which is extremely high. Wrong direction! It's been as high as 120, but when it's that high I'm in constant pain, all over my body, and in the hospital. Normal range is zero to 20. I'm on a gluten-free vegan diet now, and no MSG or artificial sweeteners, so I don't think it's my diet. It's probably my brain/ emotions/ level of stress causing me to produce too much cortisol, increasing my inflammation. SInce those things are habits that I will need help breaking (I'm working on that; reading a book about it. I will post all about that when I finish it). .. Anyway, the only quick and relatively easy (simple anyway, if not easy) radical change I can make is to go on a liquid fast for a week. I feel I really need to give my body a rest from digestion. I've got high quality allergen-free vegan food powder and rice milk. I'll keep you posted.
I've been gluten-free for a couple years now and I must confess that at first, I was not very creative with the whole gluten-free thing. I would get rice cakes, rice crackers, rice bread, and slap some hummus on them. I really like hummus, but nearly every day? Besides, that is awfully carb-heavy, all those crackers and breads. Lately, I've been making smoothies with fresh fruit, rice milk and wheatgrass powder. (even though it says "wheat"-grass, it is gluten free. confusing, but true). Packed with nutrients and fiber, and easy to digest.
I have lupus. And the last thing I need is to hear that annoying fictitious doctor tell all of America (and Britain) that "It's not lupus. It's never lupus." For millions of people around the globe, it *is* lupus. All day, every day, it's freakin' lupus. Pain, fatigue, even organ failure and death. We need a successful celebrity to "come out of the closet" and "admit" to having Lupus. It has been so helpful in terms of public awareness and removing stigma from diseases such as Parkinson's (Michael J Fox, Kathryn Hepburn), Cancer (long list here, including Sheryl Crow and Lance Armstrong), Muscular Dystrophy (Jerry's kids- as in Jerry Lewis' annual telethon). Recently, Oprah revealed she has a thyroid problem, and told folks she had been fighting fatigue and weight gain as a result. Apparently, this is a big deal in Hollywood, as celebrities keep illness a big secret. Bad for the image. And probably also makes it hard to get work. As a "local celebrity" myself (a performing songwriter and humorist), I also have been hiding my diagnosis of lupus for most of the time since I've been diagnosed (1992). I have since discovered several other peers in the world of acoustic music who actively tour and are very secretive about their chronic illnesses. Why? 2 reasons, i believe. 1) you don't want people to look at you and see the disease. you want them to look at you and see you, or your art, or you through your art. 2) fear of not getting hired because folks are afraid you wont' make it to the gig. Something like a major diagnosis makes for great gossip fodder and does the equivalent of getting on the front page of The National Enquirer, even for us minor celebrities. Even if your fan base is only 100 or 100 or 10,000 people, if you're on stage, it's the same issues as if you were Oprah, just on a smaller scale. I keep hoping some big celebrity will come out and talk about having lupus. So far here's what I've discovered: 1) Flannery O'Connor, fantastic writer, died of lupus in 1964. 2) Rapper/ Music Producer J Dilla/Jay Dee died of lupus in Feb 2006 3) Sharon Stone did an auction of fancy handbags to raise funds and awareness for lupus. her sister has lupus. This only sort of counts, because it's much easier to admit publicly to your sister's illness than your own. You just look like a healthy saint, rather than a famous sufferer. 4) James Garner (the Rockford Files) has a daughter with lupus (not Jennifer Garner). see #3. 5) Anna Nicole Smith may have had lupus. That would explain a lot. And would certainly put a very bad light on her tanning habit, worst thing you can do with lupus. 6) Michael Jackson may have lupus- but probably just the skin lupus, as opposed to systemic, which affects all organs. 7) Mary McDonough, "Erin" from "The Waltons." Ironically, she was asked to be celebrity spokesperson for the Lupus Foundation, even though she did not have Lupus. She later developed lupus. http://www.the-waltons.com/lupus.html 8) I nearly forgot about Millie the dog, of White House fame from George HW Bush I era (1988-1992)- yes animals also get lupus (and cancer, and leukemia, and AIDs). 9) Seal (the singer) had discoid (skin) lupus (same as Michael Jackson), which explains the scars on his face and also his hair loss. Fortunately, bald is a perfectly good look on him... 10) Richard Dreyfuss' first wife 11) Mercedes Yvette, runner up on season 2 of America's Top Model 12) Backstreet Boy Howie D's sister, Caroline, died from lupus 13) Wayne Newton's sister-in-law 14) American Idol contestant (2007) Leslie Hunt, who made it to the top 20 finalists. I think it was quite a risk for her to come out and talk about having lupus before she made it to say the top 4 or 10. But then, if she had waited, she may have been voted off before she had a chance to say anything. Kudos to you, Leslie, for getting so far while living with lupus, and for not being afraid to talk about it. 15) Dani Miura, Actress, To Catch a Predator (she played the 11-year old "bait" on 3 episodes, where they go after sexual predators) It's a start. But I'm not sure how much press an author who died 4 decades ago, someone's sister, someone's daughter, and the former White house dog are going to get. And having an alleged pedophile and a Penthouse drug-addicted flake on your side (God bless her soul) is not so helpful in lending legitimacy to this awful, ravaging, painful, serious disease. Most of us are treated like we're hypochondriacs for the first year or so of our illness, until they finally figure out what we have. Even Anna Nicole hid her diagnosis, and did not want it revealed, even after her death, as she "did not want to be remembered that way." I think we need someone with credibility and direct experience with the disease to come out and say "This is real, people." I'm not famous, but I'm trying to do my tiny part by "coming out" and talking about it. But what if someone really charismatic, someone loved by the public like Oprah or Steven Colbert or Will Farrell or Jennifer Aniston (God forbid- I do not wish this illness on any of them!) were to come out and talk about trying to maintain a career while struggling with lupus? (probably won't happen, because I'm not sure it's possible to maintain that kind of schedule if you have lupus! but if you developed lupus *after* becoming famous- then came out publicly- like Michael J Fox did with Parkinson's- that would be amazing). Hey maybe Dumbledor will come out and admit to having lupus! Or how about Darth Vader? or Luke Skywalker- that would be better. Darth is too misunderstood. How about Patrick of Spongebob fame? He seems to sleep a lot... (here's wishing on a "star.")
Do you have an autoimmune disease? Like Lupus, MS, Crohn's Grave's, Hashimoto's, Psoriasis, RA, Scleroderma, Sarcoidosis, Raynaud's, Sjogren's, Vasculitis? (I'm sure that's not all of them, but if you have one, you know). If so, have you ever thought of getting tested for Celiac Disease? I'm going to ask my rheumatologist to add that to my blood tests next time I see him. What is interesting about celiac is that it can lead to other autoimmune diseases. it would explain some things, certainly for me. And by some things i mean my life for the last 18 years. Celiac could actually be at the root of the entire health fiasco. If i have Celiac, then my problems are caused *entirely* by diet, and not by some other crazy ideas like bad karma, sin, luck or even genetics (which, by the way, no one has ever been able to prove. It's only true for a very few diseases. Otherwise, it's just one of those things they say when they have no idea what causes something- don't know, must be genetic. How about looking for the root of the problem? Oh I forgot that's not how we deal with illness. We throw drugs at it). Celiac Disease is diagnosed via blood tests, a physical exam, and an endoscopy/ biopsy. I'm not crazy about that last part, as it means being sedated, running a thingy down my throat and getting 8-12 samples snipped out of my small intestine. The ONLY reason I would consider doing it is to finally once and for all know what started this whole mess. Celiac disease is treated entirely by diet: avoiding gluten (mainly wheat, which hides in many products) and for some people, also dairy. That means giving up a lot of tasty food, but you know, I'm willing to do that if it means I never have anemia, pleurisy, faitgue, kidney failure, congestive heart failure, stroke, hair loss, depression, neuropathy, migraines, swollen legs/ ankles/ feet, and let's no forget prednisone, cellcept, cytoxan, attivan, paxil, placquenil, clonodine, nifedical, norvasc... and all their side effects (and expense). And oh yeah the rheumatologist, the nephrologist, the hematologist, the urologist, the neurologist, the oncologist, the phlebolotmist, the radiologist, the pulmonologist, cardiologist, the psychiatrist, the psychologist... Lastly, I've been eating gluten-free for 2 years. Turns out I may have missed some things that I *thought* were gluten free, but in fact were not, and I may be one of those 50% of Celiac people who can't eat dairy either. If I do indeed have Celiac, it will be so much easier to explain my diet choices, and no one will question it. "You have Celiac. Oh, I get it. No wheat." No further explanation needed. Everyone seems to know about Celiac. As for sacrificing tasty convenient, ever-present wheat- and dairy-based food, I'll miss it a LOT, but I'll swap eating pizza and even cheese if I must for getting my life back. There is more to my life than eating junk food! Or at least there will be once i'm fully healed. Look, I just did a search to see if anyone has yet linked these two diseases. And I found a study: http://www.ncbi.nlm.nih.gov/pubmed/18223501 The giant flaw is that they took only celiac patients and checked to see if they had lupus. What they need to do is look the other way around: check a bunch of lupus patients and see if they have celiac. Not all celiac is going to be extreme enough to evolve into lupus. But if celiac is at the root of all or even some cases of lupus, we finally have a non-drug treatment for lupus patients- diet modification! Here is a study that confirmed the theory that some or even all cases of lupus are either an extension of or a relative of celiac disease. In this study, every lupus patient who went on a gluten-free diet improved: http://bastyrcenter.org/content/view/703/
I decided I want to get back in shape. I have been kind of sedentary over the last year, with the chronic shoulder pain acting up. When your upper body is throbbing, the last thing you want to do is breathe hard and exert yourself. So I started Physical Therapy to get to the bottom of the pathology, which it turns out was tendonitis and an impingement. Ice, heat, massage, stretching, exercises, all helping. So then I decided I wanted to get moving again and get back to my old self. My old self, meaning the way I see myself, is basically an Energizer Bunny. I was the 15-year-old who marched in the school band with a sousaphone- a marching tuba. I was 4 foot eleven and a half and playing the biggest instrument in the band. I did an aerobics record every day, and i got in such good shape that it wasn't hard enough, so I would do it twice in a row every day. I played 5 instruments (clarinet, flute, piano, guitar, tuba) and practiced them all every day, and I made great grades in school. That's the energy level I want to get back to. That is my yardstick. I could focus on the fact that I was a size 5 and weighed 110 pounds, but those measurements, i've decided, tell you very little, because since developing illnesses, I've gotten both smaller than I ever imagined i'd be as an adult (80 pounds) and heavier than I ever imagined (pick a number, I'm not tellin'). A week ago, I stepped on the scale at my gym, after not weighing myself for a year. I was surpirsed to see I had gained 6 pounds. A week later, after walking 2 miles every day on the treadmill, with a few intervals of jogging, and cutting back on some fo my fatty foods (hummus, cashews), I was exactly the same weight. Then I went home and weighed myself and I was 5 pounds lighter than at the gym. What?! Yes it was the same time of day, same day of week, same clothes, same scale at the gym. One of the other gym members says that 1) there are other gym members constantly fiddling with the thing that calibrates the scale. 2) his weight is different by 6 pounds on the same scale depending on where he puts the bottom weight (he is either 300 even or 306 if he does 250 on bottom part of scale + 56 on top). most of the gym equipment is old and run down, doesn't surprise me that the scale would be as well. This is why I decided bout a year ago not to weigh myself anymore. It doesn't measure health. I changed my diet, eliminating gluten (wheat, barley, rye) and artificial sweeteners, and eating a lot more greens (salad). Sure I'd love to lose some weight, but it's far more important that I build some health. Anyhow, every house in America has a scale, and we're the fattest nation on Earth. I don't think the sale is helping. The scale is a very crude measurement of only one facet of one's fitness. You can be fat and in good aerobic shape. You can be skinny and have hardened arteries and not be able to make it up a set of stairs. I get really annoyed when I see book titles like "Fit or Fat?" Too simplistic. I know we have an obesity epidemic in America, but focusing on weight or lack of weight is not going to fix the problem. The real issue is: do you have a body that will do what you want it to do? Is it holding you back? Is it dragging you down? Are you fit? Do you have the energy to do what you'd like to? I decided a while back it's more important to have a fitness goal than a weight goal. as in "be able to run x miles in y minutes" for example). I haven't quite pinned down my goal. A goal needs to be specific and measurable, with a deadline. Which brings up another problem with weight goals. Once you reach your goal weight, then what? Go back to eating junk food and sitting on the couch? If your goal is fitness, then you can just set a new fitness goal. You can bump up from running a 5K to a goal of running a 10K, for example. I hate running, so I need a different goal, but since I haven't nailed that goal down yet, I'm just using running as an example for purposes of discussion. I think I'll end up doing something like aerobics again (I always liked that), once I"m in good enough shape to tolerate the class without ending up feeling worse the next day. So for now, i'll just be using the treadmill, elliptical, and outdoor walking with intervals of 30 seconds of jogging in order to get in good enough shape to do something I enjoy and will stick to because I enjoy it. ANd then i will have reached my vision, which is to have great energy, be able to do whatever I like in a given day, and get up again the next day and still feel great. Maybe even march with a tuba, if I feel like it.
So here's something I've been mulling over for a very long time: vicious cycles. And whatever the opposite of that is- heathy cycles?
Check out page 12: | http://ow.ly/oL22 (when disability jokes are not funny)
I'm reading a really mind-blowing book called "Never Be Sick Again." It somehow manages to confirm everything I ever suspected about the origins of disease, the shortfall of modern medicine, the destructiveness of the American lifestyle, and the resilience of the human body, as well as the possibilities of becoming completely well, despite what we've been told about chronic illness. Unfortunately, it's going to involve giving up junk food and eating a lot of vegetables. I'm already doing that, but it's going to involve even more changes than I've already made. I already knew that sugar, nutrasweet (and other artificial sweeteners), dairy, white flour (and for me, all wheat), meat were off the list for me and for the most part I've made peace with all that. But rice cakes? wow, it never even occurred to me that rice cakes were unhealthy. I've eaten enough rice cakes to start another Great Wall of China! Oh well. But back to the bottom line of this book: there is only one disease, and that disease is (drumroll); cellular malfunction. And there are only 2 causes of this one disease: nutritional deficiency and toxicity. There are 6 pathways back to health: nutrition, toxicity (lack thereof), psychological (a powerful one), physical, genetic (advice here is mostly to avoid harming your DNA), medical (the advice on this one being avoid medical intervention as much as possible). We blame so much on genetics. But we are not pre-programmed to self-destruct. In fact, according to this guy, we are pre-programmed to live to 120 and beyond, dancing and climbing mountains effortlessly until the day we die peacefully in our sleep. This is exactly what happens in isolated cultures that are free from the conveniences of "modern life," e..g., pollution, sedentary lifestyle, and processed foods. The good news is (now that we've heard the bad news: most of what we eat and love is bad for us, much of it having a net negative nutritional effect on our cells)--- we can make changes and positively, even drastically affect our health and no longer live in fear of getting sick and old and incapacitated and dependent on others, including a heartless soulless medical system that inflicts as much harm as it does help. OK I may be adding a little of my own opinion in here along with the synopsis, but not much... There is so much confusing information out there about health and diet. This one book cuts through all the BS. It is incredible to hear about the isolated cultures who are free from processed foods and are so healthy they live to 120 and beyond, doing vigorous folk dances and fathering children to the day they die, which happens peacefully in their sleep. They are so healthy they don't even have words for things like dementia. They don't even get colds. Until the paved roads come in, and along with them the processed foods. In general, when he's asked to give advice for one dietary change, he tells most people to cut out dairy. I mean really, what other species would walk up to another animal of a completely different species and start drinking its milk? Cows are kinda gross when you think about it. And for those of us with autoimmune issues, cutting out all gluten products. We've heard that one before, haven't we? I've been gluten free for a year and a half, off the diet soda for 2 years and 95% meat and dairy free for about 6 months. I am mostly sugar-free as well. It does help. I've even dropped a size in clothing. I refuse to step on the scale, because I don't want to make this about weight and vanity; this is about health and a permanent lifestyle change, the pursuit of health, vitality, freedom, reaching my true potential, being energized, feeling great. Looking great is an awesome bonus. The subtitle is Health is a Choice. Learn How to Choose It. Empowering. Promising. I'm about halfway through, still reading, but I'm sold on this one.
I don't know which causes me to lose more hair- being ill or taking prednisone. All I know is I gotta frequently pull out a blob of hair the size of a small rodent from my shower drain cover. My hair looks frizzy and damaged (probably because it is), and as someone who had long luscious blond hair most of her life, this is hard on my self-image. So here are a few things I've done to improve my hair situation during my stints of illness/ prednisone hair melee:
OK well after all this wondering what all my shoulder pain is about, we have something of an answer. We've all been guessing at what it might be. If you're looking for a frozen shoulder to cry on, you'll have to look somewhere else. My shoulder is not frozen. I have a mass on my arm. The humerus, to be exact. The funny bone. the one that runs from your elbow to your shoulder. I'll tell you what's funny: the things that run through the mind when you finally get a diagnosis for something you've been suffering with for years: "a HA! it's real! i told you so! Oh crap! it's real! is it going to kill me?" A mass. that sounds so... massive. What does it mean? a mass of what? So of course I can't get any kind of game plan or more specific diagnosis until I go to an orthopedic guy/ gal. Sign. I hate limbo. I don't even like to do the limbo. But I can't go to the doctor anytime in the next couple days. I do guitar lessons and performances. I can't just cancel those unless i'm nearly dead. So I have to just get through the next few days then see if I can get into the specialist. First the MRI. Then the XRays. Backwards, I know. Next I may have to get a catscan. What's the difference between a catscan and an MRI? Is the clanking sound more annoying? My right arm is getting so many pictures of it, it's starting to feel like Lindsay Lohan. If I don't look out it's going to start running around drunk to dance clubs with no panties on and buying designer clothes. And my left arm is getting a complex. "Hey I'm cute! Someone take a picture of me! How come the bad arm gets all the attention?" My theory is that it's arthritis caused by guitar playing in my case. Ot the guitar case in my playing. Or too many wise cracks, trying too hard to be massively humerus. I'm getting really tired of going to the doctor. Where's my &^%^ lollipop, anyway?
I've had this notion for years that I'd write a book about my adventures as a patient. Over the past year, I thought about it more than usual, and boom- a book deal fell into my lap! It's a small press- Tell Me Press- doing interesting books. My book, which I've been secretly working on since fall of 2008, is slated to come out in late 2010. It's a collection of humorous essays such as "You Can Biopsy When I'm Dead: My 15 Least Favorite Medical Procedures," and "Top 10 Annoying Things to Say to Someone Who's Just Been Diagnosed." I've gathered a few pictures for possible inclusion in the book, ranging from attractive to mildly humiliating. My famous $40 wig will hopefully make it into the photo section. It has been copy-edited (they fixed my typos and grammatical errors- I made a lot so the editors would feel needed), rewritten and is now in the hands of the typist and the graphic artist. Watch for the final product and big reveal Fall 2010.
So there's this new theory floating around amongst microbiologists about the cause of autoimmune disease (and allergies): we are overly hygienic. We're too clean. We don't have enough germs and parasites living in our body, so we are out of balance. It's an interesting theory, and I will certainly entertain the idea (although I'm not about to swallow a pound of tapeworms). The part I disagree with is *why* we have an imbalance. Autoimmune diseases are most rampant in "developed" (a.k.a industrialized, or Westernized) countries. The microbiologists posit that what those countries all have in common is lots of hand washing, caution about germs,etc. and they think that's the issue: Kids don't play in the dirt enough, we wash our hands too often, etc. Let me just say- I ate plenty of dirt as a kid. I played in a sandbox (where the cat sometimes pooped). We had recess at school twice a day, and no one washed their hands after. We shared a water fountain through my senior year. As soon as we got home, our parents sent us outside to play. I went to summer camp where we used a latrine. I am sure I ran into *plenty* of germs. And my mom was not hysterical about wiping them off me. And yet, I've still got not one, but 4 autoimmune conditions. However, I will still entertain the idea that I don't have enough parasites, or microorganisms in my system because I also had *plenty* of exposure to antibiotics. And that is what I think is causing the imbalance, not soap. Sadly, doctors were, at least in 1992, when i first got sick (but didn't yet have a diagnosis), indiscriminately giving out antibiotics, and i had 4 rounds of them in a row while they were trying to figure out what was wrong with me- and every single batch of them made me sicker. Full body rashes, vomiting, and escalation of the lupus. I've taken them for bronchitis a bunch of times, I took them when I got my wisdom teeth cut out. I think it's pretty safe to say I've taken antibiotics between 12 and 20 times in my life, and I'm probably not unusual in that respect. So if you're looking for a culprit, look past the bar of soap, which I will continue to use (though not antibacterial soap, just plain old normal burt's bees chemical-free soap- because I don't want e coli, thanks!), and look in the medicine cabinet. Yes, antibiotics save lives, but there's such a thing as too much of a good thing. Now, tell us how to rebalance our systems. will probiotics do the trick, or do we need something more gross? Can I just go back to the playground? PS would someone please study the connection between allergies and autoimmunity? Please?
Multiple Sclerosis (MS) is an inflammatory disease of the central nervous system, and is one of those "things that don't go away by ignoring it." In fact, it never really goes away and stays away. Why would I "out" these people? 1) they're already "out" 2) to point out that many of these folks have continued their demanding career in show biz, despite being diagnosed with a serious illness. I think it even made some of them funnier. Not Neil Cavuto, though. Annette Funicello Teri Garr Clive Burr (Iron Maiden drummer) Neil Cavuto (Fox news) Lena Horne Jonathan Katz (comedian) Hal Ketchum David Lander ("Sqiggy" from Laverne and Shirley) Richard Pryor Clay Walker (country singer) Montel Williams http://www.mult-sclerosis.org/
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 - autoimmunity 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" (me visiting myself- and I thought I didn't care). The rest- again- I have to take my Joe'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 walkman I have has auto-reverse, so one night I actually dreamed I was in therapy and the therapist was saying all the stuff on the tape. Over and over and over. It was like being trapped in an airport all night during the old days of CNN - when they showed the same newsreel over and over every 15 minutes. Dueting with the airport's "special security announcement" every 10 minutes. My "relaxation" tape had been running for so long that night, it became a subconscious annoyance. Finally, in my dream I asked the therapist to please stop repeating herself. Eventually- something you can't do when you're trapped in an airport unless you own one of those TV zapper gizmos- I woke up and hit the "stop" button.
There are so many famous folks who have cancer, have had cancer, or have died of cancer. I bet a number of them were very secretive about it, especially in the "old days" when cancer was generally not spoken about at all and referred to, if at all, as "the big 'C."" But these days, celebrities seem to feel pretty comfortable talking about having cancer. Thank goodness they're providing some substance to the celeb mags, between the "which 2 divas wore the same dress?" column and the "Guess whose cellulite-ridden butt this is?" photos. The point of my posting this list is this: Notice the great variety of people on this list. If the Founder of the Peace Corps, Don Knotts, Mr. Wizard, and 2 serial killers get the same diagnosis, then I must conclude that cancer, and disease in general is not doled out on a "who deserves this most?" basis. Ty Cobb - Baseball Player Gary C. Comer - Founder of Lands End clothing company Joseph Kauffman - Peace Corps Founder June Pointer - Singer (Pointer Sisters) Patsy Ramsey - Mother of JonBenet Ramsey Rudolf Vrba - Auschwitz death camp escapee Queen Hatshepsut - Ancient Egyptian Mummy (cancer is not a new invention!) Don Herbert - TV Host ("Mr. Wizard") Terry Jones - Actor ("Monty Python") Lee Atwater - Chairman, Republican National Committee George Gershwin - Composer Bob Marley - Reggae Singer Frank Edward "Tug" McGraw - Baseball Player Bobby Murcer - New York Yankees' Announcer Pat Paulsen - Comedian Slim Pickens - Actor Pete Rozelle - NFL Commissioner Wilma Rudolph - Olympic Gold Medalist Gene Siskel - Movie Critic Deke Slayton - Astronaut Robert Swanson - Founder of Genentech Ingrid Bergman - Actress Shirley Temple Black - Actress Erma Bombeck - Journalist Julia Child - Chef Sheryl Crow - Singer-Songwriter Bette Davis - Actress Elizabeth Edwards - Wife of US Senator Melissa Etheridge - Musician Edie Falco - Actress Peggy Fleming - Figure Skater Betty Ford - First Lady Kathryn Frost - Major General in US Army (Highest Ranking Woman in US Army) Nanci Griffith (Breast Cancer, Thyroid Cancer) - Singer Ruth Handler - Barbie Doll Kate Jackson - Actress Ann Jillian - Actress Susan Komen (Her sister, Nancy Brinker, founded the Susan G. Komen Breast Cancer Foundation.) Patti LaBelle - Singer Juliette Gordon Low - Founder, Girl Scouts of the USA Linda Eastman McCartney - Wife of Paul McCartney Olivia Newton-John - Actress/Singer Sandra Day O'Connor - Supreme Court Justice Nancy Reagan - Former First Lady Lynn Redgrave - Actress Cokie Roberts - Journalist Carly Simon - Singer Jaclyn Smith - Actress Suzanne Somers - Actress Gloria Steinem - Founder, Ms. Magazine Sharon Osbourne - Wife of Ozzie Osbourne Ronald Reagan - US President Charles Schultz - Peanuts Tony Snow - White House Press Secretary Darryl Strawberry - Baseball Player Ann Richards - Texas Governor Desi Arnez - Actor Jack Benny (Lung Cancer, Pancreatic Cancer) - Comedian Leonard Bernstein - Composer Yul Brynner - Actor Nat "King" Cole - Musician Gary Cooper - Actor Joe DiMaggio - Baseball Player Walt Disney - Animator Jimmy Dorsey - Musician Morton Downey, Jr. - Comedian Duke Ellington - Musician Susan Hayward - Actress Nancy Gore Hunger - Al Gore's Sister Peter Jennings - ABC Anchor Don Knotts - Actor Roger Maris - Baseball Player Dean Martin - Actor Wayne McLaren - Marlboro Man David McLean - Marlboro Man Steve McQueen - Actor Tammy Faye Messner - Televangelist Robert Mitchum - Actor Claude Monet - Painter Edward R. Murrow - Journalist Vincent Price - Actor Lou Rawls - Soul Singer Dana Reeve - Actress Cal Ripkin, Sr. - Baseball Player Ed Sullivan - Entertainer Will Thornbury - Actor (Camel TV Ads) Spencer Tracy - Actor John Wayne - Actor Carl Wilson - Musician Warren Zevon (Mesothelioma) - Musician Paul Allen - Cofounder of Microsoft Gene Autry - Singer/Actor Ed Bradley - CBS News Anchor (60 Minutes) Robin Bush (Leukemia, age 3) - Daughter of President George H.W. Bush King Hussein - Jordanian King Arte Johnson - Actor Charles A. Lindbergh - Aviator Mickey Mantle, Jr. - Baseball Player Roger Maris - Baseball Player Gabriel Garcia Marquez - Nobel Laureate Jacqueline Kennedy Onassis - First Lady Shah Mohammad Reza Pahlavi - Shah of Iran Joey Ramone - Musician/Singer Fred Thompson - US Senator Paul Tsongas - US Senator Mr. T (Laurence Tureaud) - Actor Gene Wilder - Comedian Coretta Scott King - widow of Martin Luther King Jr. Count Basie - Jazz Musician Jack Benny - Comedian Former president Jimmy Carter lost four family members to pancreatic cancer. Joan Crawford - Actress Dizzy Gillespie - Jazz Musician Steve Jobs (Islet Cell Neuroendocrine Tumor) - Apple Corp. CEO Michael Landon - Actor Henry Mancini - Musician Margaret Mead - Anthropologist Luciano Pavarotti - Singer Mel Sachs - Attorney to the Stars Harry Belafonte - Musician/Actor James Brown - Singer, Godfather of Soul Bob Dole - US Senator Louis Farrakhan - Leader of Nation of Islam Rudolph Giuliani - Former NYC Mayor Andy Grove - Intel Corp. Bob Hayes - Olympic Gold Medalist Charlton Heston - Actor John Kerry - US Senator Timothy Leary - LSD Nelson Mandela - Former President of South Africa Roger Moore - Actor Rupert Murdoch - Media Magnate Jerry Orbach - Actor Arnold Palmer - Golfer Floyd Patterson - Heavyweight Champion of the World Linus Pauling - Nobel Laureate Colin Powel - US Secretary of State Norman Schwarzkopf - Retired General Joe Torre - NY Yankees Frank Zappa - Musician Wayne Boden - Serial Killer (Vampire Rapist) Fitz Dixon Jr. - Owner of Philadelphia 76ers Stuart Entwistle - Surfer John McCain - US Senator Elizabeth Taylor - Actress Napolean Bonaparte - French Emperor Lance Armstrong - Tour de France Winner Richard Belzer - Actor/Comedian Tom Green - Comedian Scott Hamilton - Figure Skater Dean Martin - Actor Humphrey Bogart - Actor Sean Connery - Actor Sammey Davis, Jr. - Entertainer Ulysses S. Grant - US President George Harrison - Musician Babe Ruth - Baseball Player Lana Turner - Actress Mary Wells - Singer Isaac Asimov - Author Rudy Bladel - Serial Killer (1978 Railroad Murders) Gail Devers - Athlete Roger Ebert - Movie Critic Nanci Griffith - Singer Joe Piscopo - Actor/Comedian William Rehnquist - Supreme Court Justice Rod Stewart - Musician Fran Drescher - Actress Archbishop Christodoulos - Leader of Greek Orthodox Church Farrah Fawcett - Actress Sigmund Freud - Psychologist Francis George - Roman Catholic Cardinal Bobby Hamilton - NASCAR driver Aaron Spelling - TV Producer source: http://www.kantrowitz.com/cancerpoints/celebrities.html
Something was very wrong with my left foot. And I think it had to do with wearing cheap crappy tennis shoes with no arch support. I spent the whole summer with severe, unrelenting foot pain. I gotta say, when the feet ain't happy, ain't nobody happy. First we thought it was plantar fasciitis, a painful shortening of the tendon along the arch. Podiatrists can thank the flip-flop fad for their booming plantar fasciitis biz amongst teens. I went to the first 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. It really didn't seem worth it to step on it for any reason at all- even to go to the bathroom. My kingdom for a toilet sofa! Turns out, according to the 2nd podiatrist, it is Morton's neuroma. which also means inflammation and constant pain in the bottom of my left foot- the ball of my foot and my toes, including under the nails. Morton's neuroma usually happens to women who wear high heels. I don't wear high heels- or flip flops- or high-heeled flip flops (not making that up, they exist), but I did recently get a pair of sneakers that look extremely cool but didn't quite fit my left foot correctly, and don't have any support for my high arches. (But they looked cool...) I finally got a little relief at the acupuncturist and then on the way home buying some aspirin. I didn't want shots of cortisone in my foot because cortisone thins bones, and foot bones are already thin. I spent June of 2005 walking around with my foot in a Darth Vaderesque walking boot and once was enough. (anybody want to buy a well-loved walking boot for a left foot?) I couldn't take Advil because of a history of kidney problems. I wouldn't get cortisone shots. Narcotics weren't even touching the pain. But they were working, if your goal is to be groggy and constipated. Finally it occurred to me that aspirin was not forbidden for me. So my doctor wrote my a prescription for heavy duty aspirin (Saulsalate- sounds yummy. It's not). I took so much of it I started to lose my hearing! OMG! I remembered Rush Limbaugh- he lost his hearing taking a narcotic that is cut with aspirin and had to get a cochlear implant. My podiatrist kept trying to get my insurance to pay for an MRI which held things up. FInally we went forward without one, just using ultrasound (why didn't we do this first?) and he gave me shots of dehydrated alcohol. How do you dehydrate alcohol? I don't know and I don't care, because it worked well enough that Joe and I could finally go take those ballroom dace lessons we had signed up for at the beginning of the summer. I got 2 shots and that took care of about 90% of it. The shots are supposed to break up the neuroma, as opposed to just reducing inflammation temporarily (which cortisone does when it's not busy eating your bones). 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. That was the most expensive pair of cheap shoes I'll ever buy. My new motto: If the shoe doesn't fit, don't wear it.
Having just got some things cut off my skin (skin cancer runs in my family, so I was being proactive in getting it checked), I'm putting anbesol on my 5-stich wound and recalling fond memories of hospital and doctor visits... 15) catheter. I swear I should have filed for rape after that. I was in the hospital and they did a catheter, and got nothing (no pee), and wanted to do another one I said "I can get enough UTIs on my own without having a tube threaded up into my bladder. Tell your boss 'patient refused procedure.'" Did you know you could do that? yup. If they want pee, they'll just have to feed me water and wait for me to go in a cup. 14) cauterizing veins. Holy crap! how did i get talked into this one? I went to the dermatologist about something else and he talked me into getting all the little red veins on my nose cauterized- closed off for cosmetic reasons, so I'd have a nice smooth white skin around my nose. I hurt like the dickens (cauterizing= burning) and smelled like someone was grilling hamburgers on my face. Then afterward, for 2 weeks, it looked like I had lost a boxing match. My nose was completely purple. The worst part is, I got in a fight with my boyfriend long-distance over the phone, and he sent me a singing telegram to apologize. You should have seen the look on the singer's face, singing an apology song to a girl with a hideously bruised nose. Oh, yeah, and the little red veins returned within 6 months. 13) Iodine test. I can't believe they don't routinely ask people if they are allergic to iodine before they shoot it into their veins. This is what killed my grandmother. If you are allergic to shrimp, you should not get an iodine test. Unless you secretly wish to die of anaphylactic shock. 12) Wisdom tooth extraction. The drugs and laughing gas are good enough that I don't remember the procedure but oh do i remember the aftermath. I was in bed for 2 weeks. Gaping holes in my mouth where 4 teeth were cut out, and antibiotics I was allergic to. I was 19, and my parents were out of town, so when I got a full-body rash from the drugs, I kept taking them because I didn't want to get an infection. 2 weeks of hot swollen full-body rash. And, I waited until I was in a lot of pain to take the pain pills. Don't do that!! Its too hard to control then, and you end up taking more or running out. I remember that my parents were out of town, because I was alone in their huge old house with cats and central air (which makes for lots of weir noises at night). I slept with a crowbar and told myself to sleep lightly. I woke up the next day and the crowbar had fallen on the hard floor and I hadn't woken up. 11) Hospital roommate getting an enema. Me, I feel better after a good enema. But I feel much worse after the person in the next bed, who has blockage and hasn't taken a dump in months, has an enema. Geez! I was in with nausea and stomach flu that time, not at all alleviated by the toxic brown cloud wafting in my direction. Oy! Private room, anyone? 10) Transfusions. Yuk, ew, gross. But sometimes really necessary. I got them twice in '02. I had a really bad reaction to one of them- cramps, aching, itching. I mean what if the donor ate shrimp or something else that gives me hives? Not to mention the diseases in some blood. And the weird karma. Takes forever, huge needle, feels like a railroad spike in my arm, freaks me out. Again, in the hospital all day, hard to match blood type (AB+), no diet orders = no food. 9) Getting marked with a sharpie. OK, if I mark myself with a sharpie to keep the doctor from lopping off a leg by mistake while I'm knocked out, that's one thing. But when the nurse puts big permanent marker Xs on my swollen feet where she found my pulses, that's dehumanizing. 8) Glaucoma test. I don't like having drops in my eyes at all, but certanly not some yellow crap that means I can't safely drive myself home from the eye doctor. But I *really* don't like having some hard plastic thing stuck up against my eyeball. I swear he's been doing this test on me since I was 16. Who gets glaucoma at 16? The last 2 times I said "no thanks, I'm the designated driver." 7) kidney (or other) biopsy. I've had 2 kidney biopsies. The first one, I told them I was a bleeder- I have a long bleeding time (takes me a long time to clot). There are lots of major vessels in the kidneys, so they cut me open so they could see what they were doing and make sure they didn't hit a major artery and have me bleed to death for a dumb test. They put me under (not everyone wakes back up from anesthesia so I was nervous, but my doctor mocked me for being nervous. this was just before she "fired" me for "challenging her authority." Please.), stuck a tube down my throat (didn't warn me about that either. I'm a singer. Not good.), cut me open and grabbed a piece of tissue. Instead of sewing me up they put some weird see-through adhesive gauze on the gaping hole in my right side and of course it got infected. I'm allergic to so many antibiotics that I decided to kill it by taking 50 garlic pills a day., This was during the hot humid summer, so all that garlic killed my social life as well. No vampires though. End result? Tissue sample too small to be conclusive and my drug regimen remained unchanged. 8 years later i got another biopsy. I was in the hospital all day waiting for coagulant, with no food (no diet order from teh Dr). They didn't have to cut me open, but again the sample was too small and my treatment was unchanged. When they asked me about doing a biopsy last year of my kidney I told them "You can biopsy me when I'm dead." 6) Prostate exam. Or as my hubby calls it, "Prostrate exam." (just for men. I've been spared this one). To those guys who have yet to experience it, it's a finger up the wazoo. OK guys, I'll admit this can't be pleasant. They could at least warm up their hands for you. Of course we women have been subjected to a similar humiliation since puberty, but let's not let that take away from your pain. Esp when you can't see the doctor's hands and you're just taking his word for it that that's a finger in there. Which is bad enough. 5) EMG. should be called OMG! Holy CRAP! who the *%^# came up with this test? Especially for someone with nerve damage. Hello?! I'm already in pain! Zapping me with electrodes in increasing amounts of voltage, you can't be surprised when my legs jerk around in reflex. "Stop jerking!" "Stop zapping and I'll stop jerking." I never got past the first area of testing, my left ankle. Apparently they do both ankles, both knees, hands, elbows, maybe some other parts. I stood it as long as I could, but I was in so much pain I didn't even get 20% through the test. Apparently, I missed the big finale where they stick a gigantic needle in your arm and zap the daylights out of you. I never even saw the neurologist. I told me rheumatologist how awful it was and she said "Oh I had one. it wasn't that bad." Do you have neuropathy? Then shut up!) Avoid this one if you can. My friends who did make it to the big needle at the end of the tunnel tell me their treatment was unchanged afterward. I can't see any benefit to the "OMG!," unless you are a dominatrix. 4) Mammogram, better known as slam-a-gland. I'm sure you can find a great description of this on the web somewhere. Or ask any woman over 40. I haven't had one yet. Some folks even think too many mammograms can increase your risk of cancer by exposing those tissues to radiation every time you get tested. If a man had to get his you-know-what slammed between 2 cold steel plates and then squished flat as a pancake, they would be storming capitol hill. 3) a bad phlebotomist. That means, they can't find a vein with a needle. I swear, some of them can't find a garden hose with a shovel. But those are not the phlebotomists- those are the doctors playing phlebotomist, who are rusty (not literally!) and out of practice. Never let a doctor stick you. Get the expert. If the doctor tries to stick you himself, say "Doctor, I think someone's beeping you. Send the Phlebotomist, please." Important rule: 2 sticks and you're out. If a nurse can't get a vein in 2 tries, she is supposed to call for someone else. It's an unspoken rule, but you as the patient can speak it. Only 2. it's not baseball. 2) drawing blood from my fingertip with a spring-loaded needle. OW! is there no other body part they can pull blood from? All my nerve endings are at my fingertips! Do they do this to POWs to get info out of them? I'd squeal in a second! "I'M A GUITAR PLAYER! STOP POKING HOLES IN MY FINGERTIPS! WHAT DO YOU WANT TO KNOW???? I did it! I confess! go AWAY!" 1) Bone Marrow test. holy crap this was painful. OK I admit I had a crush on my hematologist, so I wore some cute flowery cotton victoria's secret undies to my bone marrow test. don't do this! They got blood all over them. They put a big hole on one side of your back, just above the hip, stick a gigantic needle into your bone and draw marrow from the inside of your leg and you can feel it all the way to your tip of our big toe. There is no painkiller that can stop the sensation. I used up every cuss word I'd ever heard, went through the Fred Flinstone cussing vocabulary, and then had to make some more up. I'm sure it wasn't cheap, either, but at the time I had Medicaid and it paid for everything. Which may be why I had this (for me, at the time) unnecessary test. Once again, nothing about my treatment changed. Except for me doing contortions trying to clean and change a wound near the middle of my back. The following, however, are not so bad: X rays (quick and painless, though probably not harmless) MRIs (I just go to sleep, but I wonder about that dye they inject me with) Bone density test (non-invasive, slept through it) Dental exam. Just the exam mind you. sonograms (they get slime all over your abdomen, but it doesn't hurt at all) Beware of doctors who are "test-happy" and remember you have the right to say no, especially if you are informed.
Palliative Care is whole-person care. many of the folks who do this sort of work are in hospice (end of life care). I performed my wacky humor throughout the 2007 conference in Anchorage, and wrapped up the conference with this little thing I wrote for them: 10) the conference opens not with HEY EVERYBODY WELCOME TO OUR 2007 SYMPOSIUM WOOOOOOOH! but "ok everyone let's get started." 9) most of the powerpoints include slides of scenery or dogs or both. 8) at no point has anyone said "After my presentation I'll be signing autographs in the bookstore." 7) You learn at least one new way to administer a narcotic 6) All the website addresses are forward slash bunch of letters slash tilda letters underscore forward slash tilda letter letter dot gov dot html 5) You're in Alaska 4) instead of free beer, free beads 3) evening activities do not involve drunkenness and nudity (as far as I know) 2) one panelist uses the word "rectally" 27 times and "suppository" 29 times and no one even blinks. 1) the room is filled with loving respectful people who make a difference by giving of themselves I'm grateful for the folks in healthcare who see how bad it is and try to make things different, but i am sad that the system makes it so difficult for them to do so, or that they forget to stop and care for themselves, that there is a high burnout rate. It's nice to know someone "inside" the system "gets it."
After sitting around for several hours at my parents' house enjoying my favorite Christmas present (besides being alive), a Van Halen Pictorial history book, I began waxing philosophical (Van Halen does that to me- well, VH with David Lee Roth. Sammy Hagar, not so much)... I have been reflecting upon the gifts that 2007 brought me. Which included seeing Van Halen on tour, with Diamond Dave, at Madison Square Garden. I screamed for 2 hours and smiled for a week. Also, getting married to my lovemuffin (www.joegmusic.com) and going to Hawaii on honeymoon (and surfing!). Not necessarily in order of gratitude, but definitely in increasing order of likelihood (as in not-a-shot-in-H-E-doubletoothpicks, whodathunkit, and maybe someday). It's hard to believe that just over a year ago I had canceled our wedding due to illness (last October, my 3rd episode of kidney failure since 1993. I got sprung from the hospital on Halloween- hospital robe- instant costume!). I'm feeling much better now, partly because I scaled back my concerts for 2007 and have been more conscious of preserving my Qi (energy/ life force). For example, I no longer sleep in the van (partly because I traded it in), and I try to fly more and drive fewer hours. I also gave up Diet Coke and began getting acupuncture again (it's been a while). I've felt less zombie-esque this past month than I have in probably 18 months. So, who knows, I may even feel human in 08! I just hope it doesn't ruin my comedy. ;)
Every year i do some holiday parties in December (and sometimes January for the companies who are too busy to have one in December). These company parties are illuminating. I almost feel like it's a sacred place that I, the interloper, somehow have the privilege of visiting. Sometimes it is joyous celebration of folks who truly love being around each other, and when that is the case, they usually have a charismatic, caring leader. Sometimes they are suffering as a group- maybe some folks have just been laid off and their absence is painfully obvious at the party this year. This year, among other things i played for an Army hospital staff, and at some point we were all asked to remember fallen comrades, with a beautiful ritual where an empty table, with an upside down glass, an empty chair and a few other symbolic things were all given explanation. 7 or 8 toasts were given, the color guard presented the colors... it was all quite meaningful (except for the macarena and chicken dance contest where people competed for grab bag presents). Before i performed we were also asked to remember those who were on shift that night at the hospital, and had to miss the big party. They rotate so no one has to miss it every year. Someone reminded me today of all the folks who have to work on Christmas- firemen, hotel workers, policemen and ambulance driveres, and clerks in the few drug/ grocery stores that remain open. You know who else that makes me think of is my Aunt (who has brain cancer), and all the other folks who are spending their holiday in a hospital bed- especially those alone. I thought I had been to the bottom, lying in the hospital bed wondering if I'd live or die, but it wasn't my birthday and it wasn't the holidays. I just can't imagine how that adds to the loneliness. I think we all go through, at one time or another feeling "I should be happy but I'm not" at the holidays- my heart goes out to those patients, and their families, as well as our soldiers, who are not living in a time or situation where they can call a Christmas truce and play soccer together. May they find some comfort somehow.
It really shouldn't seem like some radical notion that being happy enhances the immune system. I read a study a while back that said a negative stressor like getting yelled at can negatively affect your immunity for up to 12 hours, whereas a positive experience, such as getting together with friends for fun, can positively affect you immunity for up to 3 days. In fact, in the DVD "The Secret," this same principle is touched upon: we have 60,000 thoughts a day (!). Thankfully, the positive ones have more power to affect your reality than the negative ones. Of course if there are no positive thoughts... that could be a problem. The lesson? it's more important to have fun than it is to avoid stress. My still newlywed husband and I (not quite 6 months yet) were invited to a big family gathering. We were extended family, as in Joe's sister-in-law's family. We've met a number of these folks before at birthday parties, etc. So the Patriarch of the Day was Florio, who every year rents a big party bus, gives all his grandkids some money, and we go into New York City (from Yonkers) and go to Toys R Us. Then we go see the big tree at Rockefeller Center. some of us, including me, also stopped into St. Patrick's Cathedral, which is beautiful and has a life-size nativity scene in he sanctuary. I lit a candle ad said a prayer for my Aunt, who is struggling with cancer and related problems. At the tree, which is also where the ice skating rink is, I was so fortunate to have ended up at that place during the very time that a Tuba Christmas was going on! Every year, for many years now, a bunch of tuba players gather under the Big Tree and play Christmas carols. Only tubas allowed! there were 450 tubas this year! I had heard of this because I played tuba in high school. I never thought I'd see it in first person! We also saw the friendly neighborhood Spiderman on the sidewalk, 2 cops on horses, and Santa driving a stretch limo. We all then had a huge Italian dinner at an authentic Italian place that feeds you for 2-3 hours straight. whew. To top it off, we arranged for our neighbor to visit our little dog with her little dog for a little while and she kept them together for 5 hours! So even our dog had a great day. We shold be immune to anything tomorrow, always a good thing on Monday!
from the Editors or E/ The Environmental Magazine: "University of Michigan researchers reviewed numerous studies conducted between 1980 and 2006 and concluded that anti-bacterial soaps that contain triclosan as the main active ingredient are no better than plain soaps." Not only that, they may pose health risks such as killing beneficial bacteria and reducing the effectiveness of some antibiotics. (this study was published in the Journal Clinical Infectious Diseases). Apparently this active ingredient has also beben reported to have converted into dioxin when exposed to water and UV radiation. Dioxins have been linked to cancer, weakened immunity, decreased fertility, altered sex hormones and birth defects. Germs are starting to look less scary all the time, compared to chemicals. Alcohol-based hand sanitizers are also frowned upon for stripping the skin of beneficial bacteria and its outer layer of protective oil. So, after all these studies, which probably cost sombody (us?) millions of dollars, what's the best advice? "washing hands thoroughly for 20 seconds or more with plain soap and warm water is by far the most effective way to reduce harmful bacteria, and as such remains our best defense against getting sick." I have some topics to suggest for their next study: "drinking water: is it good for us?" and "an apple a day- will it cause or prevent illness?" "common sense: a fad?" "Is an ounce of prevention really worth a pound of cure- an updated study using milligrams and kilograms." (Sarcasm aside, it's sad we have to be educated away from all these products that we've been brainwashed into buying. Maybe we really did learn all we needed to know in kindergarten).
"The Institute for Healthcare Improvement research, corroborated by academic colleagues, suggests there are between 40 to 50 incidents of medical harm to patients for every 100 admissions. With roughly 37 million hospital admissions per year in the United States, this means that approximately 15 million incidents of medical harm per year in the US, according to IHI." -CBS news 2/6/07 "We're relying on data that hospitals submit, and that might be a reason to under-document" the actual number of errors and resultant in-hospital deaths, Collier told Medical Device Daily." http://www.alternativehealth.co.nz/articles/hospital.htm Tips on staying safe in the hospital: http://www.consumersunion.org/campaigns//learn_more/001735indiv.html

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