Tag Archive for white skin

Emily’s Vitiligo- part 6

emilys-vitiligo Chapter 5

Treatment

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.

Air

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.

Water

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

http://www.chrisbrogan.com/my-3-words-for-2011/

A special thought for you

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

Will vitiligo make my hair fall out?

vitiligo-hair-loss,vitiligo cover,nathalie pelletierNew comment on your post #230 “Piperine Interview With Dr. Soumyanath”
Author : Rein
HEY everybody, I’m rein and I’m 19 years old I’ve had vitiligo since i was 16 but it spread very quickly and now i have it a lot of places :( i have never before tried to fix it but I’m trying the piperine). I have one question that i am so scared to find out the answer:  WILL MY HAIR FALL OUT BECAUSE I HAVE VITILIGO?  I tried to research [and found] nothing.  Please HELP. I’m really scared. Read more