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!