Browsing Tag

white skin

Emily’s Vitiligo- part 13


Chapter 6

Typical Weekly Meal Plan

I have been asked many times, “So what do you eat?” So here is a list of some the things we might eat in a typical week.

Breakfast oatmeal with Stevia,
shredded wheat with fat free soy milk,
on special occasions we have pancakes and maple syrup,
bagels with onion slices and fake Canadian bacon (made from soy)
Lunch leftovers from dinner,
soup or chili with extra potatoes or corn,
tomato onion sandwiches,
cucumber onion sandwiches,
peanut butter and jelly sandwich (I don’t eat them very often, cause they are high in fat and sugars),
home made sauerkraut,
eggless egg salad (from Cooking Healthy With One Foot Out the Door)
Dinner black bean and corn salad,
potato salad and baked beans,
spaghetti with marinara sauce with Parmazano (from the Uncheese Cookbook),
butternut squash and spinach,
French fried wedges (really baked potato wedges),
Macaroni and fake cheese with stewed tomatoes (our own twist on a recipe from the Uncheese Cookbook) Emily’s favorite,
black beans and rice (homemade salsa),
Mexican fiesta Mom’s favorite,
Submarine Sandwich fiesta,
split pea soup and whole wheat bread,
Not-dogs or garden burgers with sprouted wheat buns and lots of fresh cut veggies,
veggie kabobs,
red beans and rice,
Turkish wedding soup (red lentils),
fettuccini alphonso (from the Uncheese Cookbook),
stir fry with baked tofu, cauliflower casserole,
burrito night with “Gee Whiz” (from the Uncheese Cookbook),
pizza (hold the cheese, add extra sauce on the side),
pasta Fagioli,
nori rolls Kyle’s favorite,
sloppy Joe’s,
baked ziti,
veggie ribs
Dessert smoothies,
apple pie/crisp,

I also like this brief write-up by the PCRM called The 3-Step Way to Go Vegetarian

Emily’s Vitiligo- part 10

emilys-vitiligo PABA

We recently (6-6-98) started painting PABA on Emily’s left ankle once a day. The product we are using was recommended by H. “kee” Wanakee,, it is called DMAE-H3 and is made by Twin-Labs. PABA is part of the Folic Acid molecule. Kee sent me the following information that convinced me to start the DMAE-H3.

I talked to Twin Labs to find out exactly what is in the DMAE-H3 liquid that is much cheaper than the lotion, and the PABA is far more concentrated, and to my amazement, I was told the product is totally vegetarian. I asked several times, and demanded to know why it smells fishy. Again, I was told its totally veggie, though the material did not list which specific veggies were used. Could be sea veggies, for Kelp and other edible sea veggies smell like fish. You can call Twin Lab customer service at 1-800-645-5626.

Eat Your Greens

We added Super Blue Green Algae to our daughter’s diet, eating low on the food chain, 6-10-96. Two pills twice daily of the ‘Alpha’ (this is the least expensive of their products). We also gave her a veggie chewable multi-vitamin, we were less regular with this than the algae.

A friend of mine invited me to a lecture by a chiropractor about the Super Blue Green Algae (Multi-Level Marketing). The speaker mentioned that he had vitiligo and within 3 months it went away. I questioned him after the lecture and I didn’t get a warm feeling about his “vitiligo”. He didn’t seem to realize that there is also a fungus that causes similar depigmentation. He said his could have been the fungus. Anytime someone tells you he got rid of vitiligo in three months, you should question him.

Emily was able to swallow large capsules early on so we were lucky. Our other daughter Katie had more trouble, if we ever needed to have her take anything we would break it up in a spoonful of maple syrup.

We take a break from all supplements for a month each year. December works well for us; since there isn’t the intense sunlight we get the rest of the year.

As of, about 6-97, we stopped using the algae. We were trying to reduce the number of supplements we were giving to Emily. If we started loosing ground we felt we might go back to the SBGA.

Mind Body Connection

We are lucky that a local counselor and friend took interest in Emily’s vitiligo. He offered to consult with her for free. He gives her mental exercises to help her to repigment. He is a licensed Mental Health Counselor and he specializes in Mind / Body medicine Hypnosis, NLP, EMDR. We now pay him for his effort and believe that it is helping her. It gets her in the right frame of mind to support the healing process.

Since Susie’s brother committed suicide, we have been concerned about depression in our family. We had concerns that her vitiligo might one day depress her.

I received email from a suicidal teenager. Unfortunately, this is a permanent solution to a temporary problem. Vitiligo may seem permanent but it doesn’t have to be. If nutritional support isn’t for you, try depigmenting or camouflage. If you are feeling depressed try St. John’s Wort. Someone on VSIG said “I can’t force myself to be depressed when I take it” and I agree, it works that way for me.

One morning I woke up from a dream. This will sound awful but I immediately looked over to my wonderful wife with some very mean spirited thoughts. I literally hated her for what she was doing in my dream. This wasn’t just any ordinary kind of hate. Every cell in my body hated her, I was even trying to convince my intestinal flora to hate her. 🙂
Before I tell you what she was doing in my dream, I have to apologize to a whole group of people. You see I am showing a prejudice on my part, and that is not always easy to do. In my dream Susie was smoking cigarettes. Of course this is not a terrible thing, people do it every day. I just happen to have a completely unreasonable phobia towards it. Anyway, I finally worked out my anger and hatred, realizing it was a completely emotional reaction to a strange dream. So logic prevailed and I went back to sleep next to the wife that I so much adore.
The next day I didn’t even mention the dream to my wife and I went on with my life. A few nights later I woke up in a cold sweat. Of course Susie had once again been smoking cigarettes in my dream. Once again I must apologize to any smokers reading this, but I really hated her for smoking in my dream. I felt she had betrayed me and betrayed my trust. She knew that I couldn’t stand cigarette smoke and that I was also concerned about the health effects of smoking. We had talked about it early in our relationship and she knew how I felt. So I was justified in my hate, but wait, this was just a dream. I had to go back to sleep and forget this nightmare. Again I didn’t mention my dream to Susie.
Then again, for a third time, I had the same dream. I decided I had to mention the dream to Susie before I went insane, or any more insane. I mentioned my dream to Susie. I told her that I had these terrible feelings towards her and that in my dream she was smoking. I also told her that I had dreamt it three times. Her jaw dropped and she told me. She told me that she had in fact been smoking at work with some of the other waitresses. We had a terrible fight, after I said some mean things. Like I had not married a smoker and that I wasn’t going to be married to one. Terrible ultimatum and it goes to show the depth of my phobia. This dream really made the mind body connection for me. At least it makes it easier for me to believe the possibilities for healing, from first healing the mind.


If you think this is all a bunch of woo-woo garbage, I suggest as a minimum to get some counseling for stress management. Read You’ll See It When You Believe It by Wayne Dyer, it helped me deal with stress. Thinking of that book reminds me about a story; I met an old friend who told me that years earlier I had hurt her badly by something I said. I didn’t even remember saying it to her, but I didn’t doubt for a moment that I could have said it (I have my moments). I apologized to her for hurting her feelings. It was amazing that for years this thing I said and forgot about had been on her mind and bothering her. She carried it around for many years.

Wayne’s book put it another way, if you are in traffic and the person in front of you cuts you off, there are two ways you can process the information. You could get angry about it and stew over it, scream at the person and let it ruin your day. Think about who really is affected by this anger, you are. The other person, the one that turned right three miles back has gone on with their life and forgot about the whole thing. They might have not been aware of it at all. The second way to process this event is to realize that that person was doing exactly what they were supposed to be doing. You could choose to learn from the situation, drive more defensively and get along with your life. Wayne puts it much more eloquently and gives you tools to use to make life less stressful.

We are also simplifying our lives. Getting rid of things we don’t need, not volunteering as much as we used to. Learning to say no. This has reduced the stress level around our home.

To boost her self confidence we have emphasized sports. She tried gymnastics and is currently in soccer. She didn’t enjoy her first experience at soccer; she was the only girl on the team. She didn’t play soccer for a year after that, then an all girls team formed and she loves it.

She also is interested in acting and music. She sang a solo at the school talent show, January 1997.

Emily’s Vitiligo- part 6

emilys-vitiligo Chapter 5


Long after the first recognizable picture in the puzzle is put together, many of the other pictures are falling into place. Some of the hardest work is yet to come. It is the most monotonous part. One particularly hard puzzle had a clear blue sky. It was just about impossible for me to distinguish each individual piece. You couldn’t look at the cover and see where the piece would fit in, they were all seemingly the same. So I started one piece at a time, trying to fit it into the hole that was left in the puzzle. Slowly the puzzle came together, as the sky was filled in.

As with the treatment of any disease or anything important in life we had to stay the course. We found what we thought would work and we kept at it. Making adjustments along the way. Never giving up. Taking supplements every day can be very monotonous and changing your lifestyle can be very challenging. It is easy to fall back into old habits.

First Do No Harm.  Hippocrates, 460-377 BC

At one point my wife and I had a big arguement. I was the tyrant, insisting on everything being perfect and pure. I felt that we had been slipping backwards, eating more refined foods. She was feeling overworked and underappreciated; she was also not willing to face the problem. I was obsessing over it. Susie wouldn’t even talk about vitiligo. Anyway we had a huge fight. She was sitting down at the dinner table and I started digging all of the unhealthy stuff in our cabinets. I started pouring all of the bad stuff on her dinner plate. White flour, mayonnaise, vegetable oil, anything I could find that was overly processed or had hydrogenated oils in it. She sat there watching me as her dish was piled high in this really gross looking mess, overflowing from her plate. I remember telling her, “here if you think this stuff is good to eat, then eat it”. I’m sure she thought I had gone insane. Finally we both looked at each other and busted out laughing. We laughed like we hadn’t laughed before; we were crying we laughed so hard. It turned out to be part of the process. We can both talk about vitiligo now.

When treating vitiligo two very important things should be addressed. First the underlying disease or condition that has caused the skin to lose its health. Only after this problem has been addressed will you start to repigment. Second, you must support your body in repigmenting.

This is how we have been treating our daughter Emily for her vitiligo.

As an engineer I come across problems weekly that I have to troubleshoot. Like most engineers I try to simplify the problem. We work on very complicated computer systems (of course they are not near as complex as the human body). When I have a problem with the system at work, I ask questions of all of the experts, the technicians and engineers. We try to address every subsystem that is affected. We systematically address each subsystem and their relation to the problem at hand. I guess that our approach for vitiligo was the same, from a systems level, whole body. We saw the vitiligo as an indication that there was something wrong. We hoped that fixing the underlying problem would help her body heal itself. It is important to find what works for you. We knew that other diseases were associated with vitiligo, so I learned as much as I could about each disease. I started to learn that many doctors had been successful treating these diseases, using a common approach. Their approaches appealed to me because of the lack of potentially damaging side effects.


Clean air is important and most of the time it is abundant in our small town by the ocean. As long as the Florida forest fires aren’t burning out of control and the local launches from the Space Center aren’t exploding and dumping their toxic fuel in huge clouds. If we lived in a more polluted area, I would have invested in a whole house, air purification system.


We started our therapy by cleaning up the water we drink. We drink and cook with only distilled water, since 8-9-95. I suggest a solar distiller, from SunWater Solar Inc., Pima, AZ 85543-0968 (525)485-0023. We have started adding minerals as an occasional supplement, 5-28-97; we mix it in with our carrot juice. Reverse Osmosis removes 80% of impurities, where distilled water removes 99%. As a minimum, I think it is important to use a carbon filter to remove the chlorine in the water. I am concerned about the affect of chlorine on your intestinal flora. Chlorine kills bacteria. Chlorine is added to your water to kill bacteria and it does its job well. Unfortunately when you drink it, it also kills the good bacteria in your digestive system.

Vitiligo Corner Podcasts: Let’s Talk Vitiligo

vitiligo-podcast,nathalie pelletier,vitiligo treatmentsHello my friends, beginning this week I will start hosting a weekly podcast themed around our favorite subject, vitiligo.

I will discuss the emotional issues facing people living with vitiligo, review current vitiligo treatments, and investigate new vitiligo treatments being pursued by the medical community. In an effort to bring those who have vitiligo closer to those searching for a cure, I will be doing live interviews with doctors, scientists, & pharmaceutical companies, where you can call in and ask questions directly to these professionals.

Each show will include a segment dedicated to you, “Me and My Shadow”. I am particularly excited about this because it is the time in which I will read your poem, tell your story, answer your question, or discuss a particular topic of interest, that you’ve emailed to me prior to the show.

You will be able to stream the show directly from this site or
Listen to internet radio with Vitiligofriends on Blog Talk Radio

Each podcast will also be available for download through our channel on  itunes.

Please join me on this very exciting journey!

To submit to the “Me and My Shadow” segment, please email here. Remember to include your first name and state or country with your submission.

How can you change your outlook of living with vitiligo?

vitiligo-resolutionsIt’s day 9 of the new year and over the past week I have been bombarded with that age old question, “what’s your new year’s resolution?”,  and I have been inundated, online, with unsolicited advice on how to fulfill some of the more common resolutions. So once again, I got out my notebook (somehow this old-fashioned method just seems more official.) to make the list. As I flipped the pages to find a blank sheet, I came across my list for 2010 and glanced through them. Ugh, about three-quarters of the items were not accomplished, and worse, they were at the forefront of what I wanted to get done this year.

“The definition of insanity: doing the same things over and over but expecting different results.” Albert Einstein

This time of year can be conducive to a couple of things, 1) micro-examining your life and 2) feeling depressed about certain aspects of your life. Every year it’s the same cycle: of making resolutions, breaking them, chastising yourself for not following through, forgetting about them, and then bringing them up again at the year end.  Einstein may have been on to something; it is insane.

After reading my list for 2010 I was a bit perplexed as to how I was going to achieve my goals, but I was excited when I finally came across an idea that will break the cycle: choosing 3 words that will be my guiding pillars for the year.

I am a techie nerd and a social media addict, so I am constantly exposed to ideas from people who are leaders in their industry.  One of my favorites is Chris Brogan. His words have inspired much of what I do to enhance our site, and yesterday his post titled, “My 3 Words for 2011”, opened my eyes to a viable way to actually make the changes I want to see in my life.

As you read Chris’s post, I want you to think about the positive changes that you can make in how you deal with living with vitiligo.

The post below is re-printed with permission from Chris Brogan.

Every year, I come up with three words that will be my guiding pillars for what I will focus on in the coming year. Instead of resolutions, which don’t usually help me very much, I work hard on using these words as a lighthouse for my actions and efforts. Here are my 3 words for 2011:

Reinvest. Package. Flow.

Reinvest – I will reinvest in my efforts in all areas of life that matter to me. I won’t phone it in. I have some fitness goals. I can’t keep playing at it. I have some financial goals that will be met. I have community goals that require me to reinvest in my projects and not take on new things.

Package – I just wrote about packaging the other day. Essentially, I’m going to get my own marketing house in order. I’m going to make sure things make sense, make sure they are easy to understand, and make sure that the right people know about them. Packaging will have other meanings, too, but this one is important to me in 2011.

Flow – In the last few months of 2010, I came to realize that I’m still doing too much. I went into redrawing mode yet again. One thing I have to do much better in 2011 is manage flow: that state of working on the most important stuff and eliminating distractions. I’ve cut a lot out of my original plans for 2011. I’ll surely cut a little more. The end result? Things will come out much better. I’ll have less stress. Things will flow nicely.

3 Words Aren’t Goals

The three words idea is built so that you can have something to reflect upon. As you know, goals should be SMART ( Specific, Measurable, Achievable, Realistic and Timely). The way you use the two together is that you think up goals that will match up to your words. For instance, one goal of mine in 2011 that ties to “reinvest” is to lose 50 pounds over 10 months. 5 pounds a month is specific, measurable, achievable, realistic, and timely.

There you go.

And You?

What are your three words for 2011? How will you guide your actions?

My 3 words are: action, focus, simplify


A special thought for you

vitiligo-christmasHappy holidays! Wishing you a weekend full of memorable moments and worry-free hours. Many hugs to you 🙂