Friday, December 28, 2007

I'm not sick this Christmas

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 ( 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

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. ;)

listen to funny songs at

Monday, December 10, 2007

Happiness is Good for you

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.(It really shouldn't seem like some radical notion that being happy enhances the immune system.

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 should be immune to anything tomorrow, always a good thing on Monday!

Speaking of fun- hear some funny songs at

Wednesday, December 5, 2007

the water cure

here's that great report i mentioned yesterday about how vital water is to our well being.
I drink a lot of purified water!
i bought a sports bottle purifier at and carry it everywhere. i can refill it just abotu anywhere, because it cleans it up, so i don't have to buy bottled water, and i don't have to carry around big huge gallons on roadtrips.
water report:

Tuesday, December 4, 2007

Lupus gene found?

The below quoted article (which i have shortened) is calling for DNA samples from lupus patients. All you have to do is ask your doctor about how to do this, then give a blood sample (I don't know about you but I do that every 3 months anyway).

I am skeptical about genetics being the cause of lupus. I think it's toxins in our food air and water. but hey, if they find a gene therapy that helps, then great. Let's go at it from all angles.

Lupus Gene Finding Prompts Call for More DNA Samples. Wellcome Trust Sanger Institute Study

Wellcome Trust researchers have identified a key gene involved in the disease lupus, which affects around 50 000 people in the UK, most of them women. The lead researcher behind the study has called for more patients to volunteer DNA samples to enable them to further study the underlying causes of the disease.

fighting to get better

So, i've been on 7 drugs for over a year to manage my health problems (this is part of the reason that CD #4 of wacky Carla songs hasn't occurred yet. that and moving, and planning our wedding). I've decided I'm tired of popping all these F**king pills and more tired of paying for them, so I'm back on the warpath to getting better and getting back off these drugs (for the 3rd time in 15 years).

A month or so ago I quit drinking diet coke. I've been addicted to it for lord knows how long, even though I know it's toxic. Then I bought this sport water bottle that has a built in water purifier (which does more than just a water filter) and have been drinking copious amounts of clean water (it also saves me money on bottled water when I travel, and who knows how clean bottled water is anyway?). here's a report on the amazing healing powers of water. you know, drinking it. I jsut finished reading adn online report:

The Water Cure: An interview with Dr. Batmanghelidj

(how often do you think he gets called "Batman?"). So many problems in the body when we get dehydrated. Then when we're thirsty we drink stuff that dehydrates us even more- coffee, soda, alcohol.

Anyway, next step i started getting acupuncture again. It's been several years and I really respond well to acupuncture. I stopped going when I moved to NJ, and finally restarted. The acupuncture gave me enough energy to start taking guitar lessons once a month which makes me happy. Being happy is good for your health too :)

I also got some really good vitamins and mercury free fish oil. I'm hoping to be my old perky self sometime in 08. well not OLD as in OLD, but old as in former, before the health fiascos. ;)

had to post something healthy- i am after all the singing patient! (i may have to change my name in 08 after I get off all these pills! I like to think big. Worst case, I'll just feel great instead of awesome.)

Germs are your friends

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. Ok that's it. I'm washing my hands of this topic. HAHAHHAHAHA... ahem).

Saturday, November 17, 2007

Why Do I Have Lupus?

That's the question that haunts us when we're diagnosed with lupus. (After of course, "what the heck is lupus?")

For me, it was very important to differentiate between taking the *blame* for getting sick and taking the *responsibility* for my illness. Taking the blame means I did this to myself, shame on me, it's my fault, and I deserve whatever comes to me. Taking responsibility is more along the lines of "well, for whatever reason, I have this disease. I will learn as much as I can about the illness and the various options available to me in terms of treatment, both mainstream and alternative, as well as self-care. And then I will act on that knowledge."
I did not choose to have lupus (I'd never even heard of it), but I do get to choose how I react to it. And that takes me from being a victim to being a participant in my state of wellbeing.

Western medicine (which means, the US and mostly Europe, as opposed Eastern Medicine, which would be Asia) blames all illnesses on genetics and viruses. For the most part, they do not consider other factors, such as diet and mental state, toxins or previous medical treatments as contributing to a state of dis-ease, or illness. I do believe that some people have such great genetics that you could roll them in toxic waste while they guzzle gin and chain smoke guitars and they’d never fall ill. And some of us are far more vulnerable. Butt illness does not pop up out of nowhere for no reason.

Don't get me wrong- Western medicine is exactly who I'd go to with a broken bone, a bullet wound, or any other emergency/ trauma. And in fact, I use them all the time, despite the fact that I'd rather not. But for chronic illnesses, especially autoimmune diseases like lupus, MS, chronic fatigue, scleroderma (etc.), managing the diseases with just medication can lead to even more serious problems down the road, caused by the drugs.

On the other extreme, refusing drug treatment when lupus (or another disease) is wildly out of control and is attacking vital organs is not wise either.

So the ideal scenario for someone like me, with severe lupus, which involves major organs, is this: a miraculous overnight spontaneous and permanent remission. While I’m waiting for that to happen, my plan is this: Go on the drugs and get the disease under control. Once the symptoms are under control, and I have the energy to do so, start dealing with the underlying causes.

Things that contribute to poor health:
- poor diet (including processed foods, transfats and artificial sweeteners, esp. aspartame, aka nutrasweet, not enough fruits and veggies, too much sugar/ salt)
- dental fillings containing mercury
- other dental problems
- food allergies
- alcohol/ drug abuse
- environmental toxins, including but not limited to heavy metals, polluted water and air, pesticides, household cleaners
- stress
- personal relationships
-"unfinished business" (emotional baggage)
- overgrowth of yeast (candida) (which can be caused by taking antibiotics or steroids or the Pill)
- poor mental health
- poor attitude
- viruses
- bacteria
- parasites
- poor digestion/ low stomach acid
- undetected gallstones
- and the very medications prescribed to us:
- vaccinations (those who have been vaccinated have a higher incidence of cancer, autism, and arthritis than those who have not been vaccinated)
- antibiotics
- steroids
- over-the-counter medications, esp. NSAIDs (non-steroidal anti-inflammatory drugs such as Advil, Aleve, etc.)

(sources:, and Alternative Medicine, book )

For the most part, our medical system is illness-oriented instead of wellness-oriented. Even "wellness days" are often just screening for people they can sell Blood pressure or cholesterol drugs to. It's all about drugs and surgery. Everything is blamed on genetics and viruses (or bacteria) and then drugs are thrown at it. We are treated as though we have little to no control over the state of our health and these things just "jump out at us" for no reason. Patients are not generally challenged to change their lifestyles.

Either our doctors don't believe our lifestyles have much, if anything, to do with our health; Or, if they do, they think most of us would rather pop pills and just go on as usual, rather than make difficult changes. Sadly, that is often the case. While I realize that in some parts of the country, it's nearly impossible to make healthy changes (in South Los Angeles, it is reported that it is easier to obtain a handgun than it is to get a piece of fruit), for those of us who have the means to get healthy food and supplements, we have to overcome our old bad habits if we're going to get as well as we can.

When I look at the list of causes above, I think of the many, many teeth I've had pulled, the braces, the wisdom tooth extraction, the current cavities I have that need to be addressed, the operation on my eyes when I was 3 or 4, the vaccinations, the full-body rash I've had at least twice from taking antibiotics, the junk I was eating before I got sick, because I was on minimum wage, my personal situation when I got sick: disliked my job and bought a place in a neighborhood where I was broken into less than 2 weeks after moving in, the stress of trying to live on minimum wage, and being totally addicted to Diet soda and Advil. As for poor digestion, this one is chicken- egg (which came first?): I read that 100% of lupus patients have food allergies! Do food allergies contribute to lupus or does the treatment for lupus (steroids) result in developing food allergies? And regarding yeast (candida), if you don't have it to begin with, you will develop it from taking prednisone. I did.

Now some people get really mad when they hear of people suggesting a “cure” for something like lupus. They may feel that folks are trying to scam sick people, which does often happen. Or, they may not want to admit that maybe they can do something to positively affect their own health. I can’t read their minds. I also can’t control how other people feel. So, that being said, I present to you this list of:

“cures” (things that will help restore your health):
1) Eat good food.
A low-fat vegan diet is suggested for folks with lupus. Vegan means no meat or animal products, including butter, cheese, milk, ice cream) If you decide to go vegan or vegetarian, do some reading to make sure you get enough protein. It’s not enough o just eliminate certain foods; your diet needs to be balanced.
The Candida Diet is challenging but when I did it for a year and a half (2002-2003), during my second big lupus flare), I felt really good. I looked pretty good too, looking at pictures from then. My hair and skin were nice, and I kept my weight at its ideal. Eliminating sugar? Impossible! No, there are lots of great choices of other things to eat, and even natural sugar substitutes like stevia and xylitol.
Food Allergy Elimination Diet. I got a blood test for food allergies, this is where they draw blood and look for delayed allergic reactions, the kind you wouldn’t notice because they occur 24-72 hours after you eat something.
Juicing is a nice way to get lots of nutrients easily assimilated. Be sure to use organic fruits and veggies and wash them.

2) take digestive enzymes, a high quality multi-vitamin, and high-quality (mercury-free) fish oil (or fish/ flax oil mix) daily.

3) get a dental checkup with a holistic or “mercury free” dentist.
If you have mercury fillings (any metal, or “silver” filling is at least 50% mercury, a known and serious toxin), get them replaced with porcelain or composite. If your dentist gives you a bunch of grief over this, go elsewhere. These metal fillings are supposed to be replaced every 15-20 years anyway.

4) eliminate environmental toxins. If you live next door to a power plant, move. Other than that, use natural products to clean your home. There are all kind of great recipes for cleaning solutions involving lemon juice, vinegar, etc. You can also put a whole-house air filter, a (much cheaper) one-room portable air purifier (I used this when I developed post-prednisone hay fever- very helpful), a whole-house water purifier, or separate water purifiers for your kitchen sink, your shower, your sport water bottle, etc. There is a difference between a water filter and a water purifier. Purifiers remove bacteria, cysts, chemicals, and viruses (which filters do not remove), as well as lead and chlorine.

5) counseling/ journaling/ support group. It’s important to have a place where you can honestly share your sometimes overwhelming feelings about having a chronic illness. Family usually have enough to deal with, thinking about caring for you, or whether they gave you faulty genetics, or whatever- they’re usually to close to the situation to be of much solace. Sometimes the official support groups are not good at dealing with emotional stuff either. So I started my own group where we could all blow off some steam. And I went to a counselor for about 6 weeks and just blew off steam every week.
Even cheaper, and write out your feelings every day for 15 minutes. Then hide it somewhere where no one will stumble on it.

6) exercise. Even if it means slowly getting into the pool, hanging onto the side and just bouncing for 5 minutes, start somewhere, and set little goals to do just a little more each time.

7) laughter/ good company. It’s so important to have something in your life that brings you joy, and makes you want to get out of bed. Mad libs, funny movies, comic books, and good friends who aren’t frightened off by your illness and can laugh with you. Many studies have been done abot the positive impact laughter has on health and well-being, releasing endorphins, improving mental outlook, and even providing exercise!

8) drink clean water and plenty of it.

9) get a heavy metal test: you can get a tiny sample of hair tested for the presence of lead, arsenic, nickel, copper, etc. If you do have these, or aterial plaque, then you may want to get chelation therapy. I did, and I felt great during that time.

10) learn some self-care: meditation, qi gong, yoga, tai chi

11) acupuncture. I love it.

Where I’m at right now:
One year ago, I had my third lupus flare (induced, in part, by the stress of moving and wedding planning). I was in the hospital for 8 days. My kidneys were failing for the third time (down to about 30%). I was put on a bunch of drugs, including 40 mg of prednisone and 2000 mg of cellcept, as well as attivan, paxil, nefedical, and percaset. A year later, I’m still taking all of them, except I’m on 1000 mg of cellcept and 2.5 mg of prednisone.
So, while I am able to eat again and my kidney function is back to normal and I am mostly pain free and these are all wonderful things, I am still tired and wear out quickly. I don’t feel sick, as long as I don’t do too much, but I don’t feel well and I have to sleep 10-12 hours a night.

I did not return quickly to my healthy endeavors, as I had done during my first 2 flare (1994, 2002) because I still had a house to unpack, a career to maintain, a dog to help take care of, and a wedding to reschedule. And I was so tired. So I just plowed through the last year, largely on sheer willpower and drugs, still feeling pretty tired. Finally, the wedding is past, the house is mostly settled into, the dog is easy to care for, and I’m slowing down my performance schedule so I can take care of myself and get back to feeling good again. I know it’s possible to feel good again, because I’ve done it.

What’s the Plan?
1 month ago I quit drinking diet coke. That was hard. I craved it. I made some tea with stevia. I’ve mostly been drinking that and some water. I then purchased a sport bottle water purifier, which I keep with me all the time, and have been drinking lots of clean water. And a couple weeks ago, I started back with acupuncture. A week ago, I added back in good-quality daily mutli-vitamins. Yesterday, I started back on digestive enzymes. Eventually, I’ll do the candida diet again, as I’m sure I’m crawling with yeast again, now that I’ve been on prednisone for a year and have had antibiotics at least twice in the last year. Meanwhile I have to get some dental work done. (again…).

I’m sick and tired of being sick and tired. I want to feel great again, and I believe I can. I know I can, because I’ve done it before. I’m living proof to myself. Will I make the effort and follow through? Tune in next time for another edition of…

The Singing Patient

Winning the hair battle with lupus

One of the toughest parts for us gals with health problems is how disease and the drugs prescribed to us affect our looks. Last year in the hospital, I mentioned to the doctor how I hate the way the prednisone makes my skin and hair all dry and sickly. He started in on the typical lecture about saving my kidneys (heard it before) and I cut him off and said "I know I HAVE to take it. But I don't have to LIKE it!"

He was put off by my frankness and thought I was being obstinate (his words), but since I was trapped on the hall (they don't allow you to wander the hospital) and full of drugs that make me not just unattractive but extremely anxious, to the point of near psychosis, and they don't have any available counselors or psychologists in the hospital... well, how surprised can he really be that once in a while someone blurts out the truth about how they feel?

Alright, so prednisone. Can't live with it (or another human being if you're on 40 mg or more), can't live without it (if you have an autoimmune disease or an organ transplant). At least it's generic and therefore cheap. But short-term it has some horrible side effects: weight gain, mood swings, nasty skin, hair loss, moon face, hump back; and long term, some even worse ones: osteoporosis, cataracts, high blood pressure, diabetes. Swap in one disease, get 4 more, and look and feel like crap in the process. All for only $4 (generic) a month at WalMart! What a deal!

I've been on this stuff 3 times now, for about a year each time. I'm on it right now, so if you don't like this blog, don't tell me about it, because I can't be responsible for my reply. Hey- if someone can get acquitted on the twinkie defense or PMS, why not the prednisone defense? It's much more valid than twinkies. For one thing, I doubt the twinkies were forced on anyone as part of a "take this or die " prescription (more like a “do this often enough and you will die”warning). Think about that.

So anyway, 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:

1) Leave-in hair conditioner. I get this pantene stuff you can just spray in your wet hair before putting a comb through it. It helps the comb run smoothly through my hair without getting snagged, which reduces a lot of damage. You can also buy Paul Mitchell "detangler" which you use in the shower. Works as well.

2) Air or towel-dry hair before blow-drying, to cut down on blow-dry damage.

3) Do not wash every day.

4) Deep-conditioning like hot-oil or 3-minute deep conditioners. they say do it only once a week but I do it twice a week because my hair is so damaged.

5) Cut off the dead ends. Dead, dry split ends do not make your hair look longer, just more dry and unhealthy.

6) Use control paste (a dab smaller than a dime) to make the ends less frizzy. Rub it between your palms, then work it into your hair, starting from the ends. If you get too much of it near the roots, it makes your hair look greasy and unwashed.

7) Use "shine" or other hair gloss. Again, a dab'll do ya, work it in from the ends. This gives your hair back the "shine" it loses when you're fulla drugs and not metabolizing nutrients normally.

8) Use curlers (NOT hot curlers, but the kind you just put in when you hair is damp and leave in 'til it's dry) for special occasions to make your hair look fuller.

9) Use natural products as much as you can. I use healthy shampoo and conditioner that I get at the health food store or through mail order that has no perfumes or other chemical crap, and instead has tea tree oil/ aloe/ other things that are good for your skin

10) I put a water purifier (this is even better than just a filter- a purifier removes more stuff than just chlorine and lead) for my shower. My hair is softer, and is not being exposed to chlorine and other chemicals every time I shower. it took me 30 seconds to install.

11) Get a GOOD swim cap (like a speedo racing cap) if you swim in a chlorinated pool. Swimming is good for you. Chlorine is not. Anyone remember green hair from childhood summers in the pool?

12) Get a wig. if you're in a stage where you've lost so much hair that you can see your scalp, or you have curly hair growing in under your straight hair and it's making the hair stick straight up (been there, done that!), get yourself a wig. Unfortunately, as of now, "Locks of Love" (the free wigs of donated human hair) are only for cancer patients. But some health care plans may cover at least part of the cost of a wig if your doctor prescribes it as a "necessary cranial prosthesis" (I am not making this up). I was not in such a position (though I did have prescription compression panty hose). So I went shopping with my most princess-y adult friend and got myself a nice discount synthetic wig for $40. I still have it. I was nervous that everyone would know it was a wig. The first day I wore it out, the clerk in the store commented on my great haircut!

13) Then, of course, there are hats and hairpieces. One of my friends who has thin hair - not ill, just born with thin, lifeless hair- had an especially cute 'do one day. I complimented her on it and she told me it was a hairpiece she bought- at the dollar store! For a dollar! I've also seen long and short ponytails at the drugstore for quite reasonable prices. This for special occasions, especially if the hairpiece is heavy and pulls on your natural hair.

14) Color it. Sometimes certain drugs keep your hair from absorbing the dye. And some folks will tell you shouldn't be exposing yourself to more chemicals while you're sick (what do you think all those drugs are?). Maybe they're right. But, looking in the mirror and hating my hair every day isn't good for me either. The way I feel emotionally affects the way I feel physically. And not wanting to leave the house because I feel so unattractive is also bad for my mental health. So for a $10 bottle of highlighter and an hour or so of my time, I go sit outside or in the garage so I don't stink up the house, and change the way I look. It makes me feel more in control of my looks, and I think it came out pretty good this time!

15) Fix it from the inside: take flax seed/ flax seed oil. it makes your hair grow faster and gives it shine. And, it helps keep your regular! Wahoo! A quality mutlivitamin is also a good idea.

16) do NOT get hair extensions or weaves, unless you have permanent hair loss. in the end, getting extensions does a lot of damage to your real hair and eventually you have to cut it even shorter. for those of us with hair loss due to Systemic lupus and/ or prednisone use, the hair *will* grow back. Not necessarily the case if you have the cutaneous (skin) form of lupus.

One thing I regret is not having the brass to tell my family I did not want to have my picture taken the Christmas I was wearing a wig. we only get them done every 10 or so random years. Why did it have to be the year I was sick? Why immortalize that? I say this for my own ears/ eyes as much as for yours: it is your right to say "I'd rather not have my picture taken today. Can we do it on a day when I feel better so it will be a good memory?"

Many good hair days to you all. If you have ideas, please leave a comment!

Friday, November 9, 2007

Things to do before I die- Why wait?

Well, my list of things to do before I die is about to get shorter by one huge event.
I'm going to see Van Halen, the original van halen (with david lee roth, their original singer).
This is so so very high on my list of things to do before I die. I understand that not everyone thinks of a loud raucous rock concert of screaming guitar and a glib egomaniacal front man as utopia, but I do.

So, if you're not a fan of Van Halen, then whenever you see a Van Halen reference on this blog post, just insert whatever is at the top of your list of stuff you really want to do in this lifetime, whatever brings you true joy and leaves you smiling everytime you think about it, and grinning with anticpication while you're waiting for it to come around-OK?

Back in my school days, my room was covered in posters and clippings of Dave and Eddie and the band. I used to place the needle of my record player at the beginning of their record and set my stereo on a timer and wake up to them every morning (geez, what am i 80 years old? and then we walked to the creek and brought back buckets of water...).

The band split up in 1984 before I ever had a chance to see them live. I saw Van Halen with their replacement singer, Sammy Hagar, but it wasn't the same. I saw David Lee Roth with his replacement band (The David Lee Roth band). it wasn't the same. They've been feuding for 23 years, rumors of reunions, always dashed shortly after they arise. Those of us who are hardcore fans have been on an emptional roller coaster since they split.

When their tour was announced earlier this year, I told my pal Bob Malone "We MUST go to the first concert. Those guys have such a hard time getting along, there probably won't be a second concert. There may not even be a second half of the first concert." Well, wouldn't you know it, within a week, Eddie was in rehab, claiming to only be there to avoid Dave. And the tour was canceled. But somehow, they rescheduled for fall and they have been on tour for something like 6 solid weeks and no canceled shows!

So, barring the apocolypse, I'll be there, Madison Square garden, Tuesday night. I am READY! This may be my only chance.

Other things that I've been pleased to experience before I die:
-see Les Paul in concert (i was more in a hurry to see him before *he* died!). this was a couple years ago at the iridium in NYC, where he plays every monday night to this day. he must be 90 years old!

- see cheap trick in concert (another "real band"). the sad part about this was they were the opening act. For Ratt. But they still rocked.

- being drum major of the marching band

- going to Hawaii- and surfing- and skinnydipping!

-getting married to the lovemuffin (my best friend and soulmate)

- finding a pet who was a soulmate (Slick, a cat); several years after losing slick, now having found another pet soulmate,, our dog "easy."

-performing in england

-going to mexico

-going to australia

-go to GIT in hollywood

-driving across the entire country in less than a week

those are all things i really wanted to do, and dreamed about, and they came true.

stuff i've done/ seen that i would have put on the list had i known how fun it would be:

-seeing stanley jordan live- twice!

-going to merlefest several times

-seeing chet atkins live

-learning to water ski

-learning to snow ski

-take an 8-part comedy improv class in NYC

-teach at guitar camp

-seeing simon and garfunkel

-sleeping on the sidewalk for bon jovi tickets in their big-hair days! (the concert was great too)

-seeing sights on route 66

-visiting the smithsonian

-visitng alaska

-visiting montana

-jumping off a rope swing into the lake

-visiting key west

some other great concerts i've seen:
-motley crue (I was so impressed with the drum cage and how they turned the thing a full 360 during the drum solo- what can i say i was young and easily impressed)

-eric johnson, though the club was so packed and full of gus, all standing , that i saw very little, just heard it

-ratt with poison, ratt with cheap trick (Saw ratt twice in one year. i really liked them. best album: out of the cellar). tickets in those days were like $10.

-david wilcox, 1994 i believe. i saw him several times in the span of 1994,95,96. those were golden years for him!

-tommy emmanuel, who i was expecting not to like because of all the hype around him, and because the youtube videos out there don't do him justice. he's awesome.
-thom bresh, 1995 (but still great now). i had no idea who he was before i saw him. great entertainer, and a magical thumbpicker.

well i'm sure i have foregotten to list some great concerts- i have yet to see jerry reed. and one day i want to write a book. i mean i wrote a music instruction book, but more of a prose book. and maybe i'd like to visit every state of the US and return to australia. and live in a house that is completely off the electric grid, totally self-sufficient.And most of all, I want to be a contestant on wheel of fortune! (and win "big money!") And meet Oprah and Steven Colbert. And be an extra in a movie.

it's not really time to write my memoirs yet, so i can always keep adding to my list of things to do before i die! that's the cool thing. once you've done everything you want to do before you die, you can think of new things. Like i've heard it said "do the next right thing." after that step, you know what comes next.

Meanwhile, TUESDAY NIGHT! VAN HALEN! (I had to buy my tickets through because the box office was sold out long ago). Now I really doubt that Dave is no longer an egomaniac or that Eddie has resolved all his "issues," whatever they may be. So if seeing Van Halen is on your list of things to do before you die, what are you waiting for???

One of my friends died suddenly of a heart attack this summer. I believe he did nearly everything he had ever wanted to do. So, whatever it is on your list to do before you die, what are you waiting for? Live your dreams! Australia might be underwater by the time you finally go! The band might break up by the time you start looking for tickets!

Sunday, November 4, 2007

We need a celebrity to "admit" to having lupus

I'm literally sick and tired. 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.
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.")

Better yet, once the writers come off strike, they need to write in "Doctor" House as having lupus. Oh yeah, that would be poetic justice.