Category Archives: My Story

Avoiding pain and having vitiligo

Written by . Posted on January 20, 2012. Filed under Dealing with vitiligo, My Story. 2 Comments.

Who likes pain? Who likes discomfort? Who likes awkwardness? Who likes feeling uncomfortable?

You do.

Well I do. I have learned to love pain and discomfort and awkwardness and the uncomfortable.

Why do I love these feelings? These feelings have brought about the most significant learnings and growth that I am aware of. Last year I started working towards optimal health. I want to be the healthiest person I am able to be. I want to be healthy so that maybe I wont have vitiligo or not be as affected by having this disease vitiligo.

I started an exercise program three times a week. I hike regularly and luckily I am able to hike year round because I live in the San Francisco Bay Area. I have lost weight, gained lean muscle mass and in some areas regrown pigment, specifically on my hands. I have also lost pigment on my legs and a couple spots became evident on my chest for the first time. I feel healthy, I feel fit and now I am doing Bikram Yoga every day.

The pain and discomfort of exercise is paying off for me in the form of a healthier me. Pain and discomfort were required for me to get in shape.

This same pattern is evident in every other area of my life. A willingness to experience discomfort socially, in relationships and in my every day life is required for growth in these areas.

I had an amazing realization not so long ago. I realized I had not thought about having vitiligo in a negative way in several months. I realized that while I was shaving I was not looking at the lack of pigment around my mouth and on my neck. I did not worry about its spread over my face. I would go on dates and not worry about what someone would think. I see my reflection in a window and I see me, rather than my vitiligo. I see me not a disease.

How did this happen? I dont know exactly but I suspect that my willingness to experience discomfort and face my fears played a role. Increasing my physical activity helped I am sure. Increased social activities helped too. Also, when you hear from 5 different girls you find attractive that they find you attractive too and they noticed your vitiligo that has removed most pigment from your hands…you gain insight into other peoples thoughts.

I discovered that a smile makes way more powerful an impression that any amount of vitiligo, most times. People can only be as kind to you as you are kind to yourself. Being kind to yourself is hard too. Its a struggle that is worth the discomfort you will feel.

What can change in our lives if we let pain and discomfort to drive us forward rather than keep us down? What can we do if we practice and work and struggle to get better at being us? What lessons will you teach yourself by allowing yourself to fall into an uncomfortable situation? What will discomfort permit you to do?

Going to the doctors for the first time for vitiligo

Written by . Posted on September 20, 2011. Filed under My Story. 4 Comments.

It was in May of 2006 that I realized I had vitiligo. In fact I had vitiligo before that point but I had not come to the conclusion that I do indeed have vitiligo. The feeling of dread was real. Though at that point I had no idea how fast the disease would progress.

It took me almost a year to call a dermatologist and schedule an appointment.

Why did it take me so long? Not sure really. Part denial, part depression, part ignorance. There is not much good information about the disease. I went through the major websites about the disease but there are no answers there.

The question is what do you do?

I did searches on google for vitiligo treatment and found a dermatologist that was advertising under that phrase and went to the website. They talked about narrow band light therapy and the excimer laser. Of course I called them and asked to talk to someone about the disease.

Asking basic questions I got basic answers. Really the answers were half answers. There is a saying in sales that you only say enough to get the sale. Well that is how I feel about my entire interaction with this dermatology clinic. I told enough that I would buy.

Buy I did. I was there for almost 9 months. They prescribed elidel. They prescribed narrow band phototherapy. I asked them in the first meeting what elidel did. How does it work? Side effects? They said with a straight face: “We don’t know what it does.” I was astounded but not able to assert myself to the point where I could get answers I needed.

Then they said we need to document the disease for insurance so strip down and get ready for pictures. That was demoralizing. I felt like I was watching myself through the whole thing. I realize now I that I was depressed. My feelings did not come to the surface but through the blank look on my face, the lack of questions the lack of discussion among my friends and family. I went through this alone, stuck inside my own mind, unable to process how I felt about how I was being treated, what I was being told and what was being recommended. The loneliness that I experienced was only in my head. I had friends, I had family and I had a support network to rely on anytime.

Nine months after my first visit I saw another dermatologist. I wanted a second opinion. That second opinion changed everything for me in relation to my vitiligo. More on that later.

Embracing Vulnerability, Vitiligo and Ourselves.

Written by . Posted on August 10, 2011. Filed under Dealing with vitiligo, My Story. 3 Comments.

Have you been to TED? It is a place to find good presentations of ideas. I go there at least once a week to see what is new or just look for something I have not seen before.

Recently this one talk has captured my attention: The power of vulnerability, by Brene Brown. The talk is about human connection, how it happens, how it works and when it does not work. “When you ask people about connection, the stories they told me were about disconnection.” As people and as people with vitiligo, we know a thing or two about disconnection. “Is there something about me, that if people know it or see it, that I won’t be worthy of connection.” It is universal for humans. It is particular to people with vitiligo. We experience a fear of rejection in a way that is different for people without vitiligo. Still, we are all human and we can learn from each other, whether people have vitiligo or not, we can still learn from each other. I would be curious to hear what you all have to say about this talk, embedded below here:

Have you considered vulnerability to be a personal strength? Is it possible that vulnerability allows for significant personal connection? This is what is discussed.

Considering these ideas has brought about there thoughts: We are vulnerable to the people around us and we have vitiligo. We are not vulnerable because we have vitiligo. Vitiligo does not make us vulnerable. We are vulnerable to people because we are people.

We walk outside with spotted skin, two tone skin and hope that we will not be judged less beautiful than others. We hope that people will not notice. We hope that we will be accepted for who we are. We hope that we will be loved in such a way that our vitiligo will not matter. These are human concerns. All humans have these same concerns. The concerns of a person with vitiligo are colored by the disease vitiligo, yes, but they are universal human concerns.

We feel shame about a broad range of things. I wonder if having vitiligo will prevent someone from loving me in the same way someone wonders if they are too quirky enough to be loved, or too this or too that.

There is an endless supply of shame that we don’t confront in our lives. For me, shame will be something that I will confront as best as possible. When I am in the right company, I will talk about it. I will not allow shame to affect my life as it has in the past.

How does shame function in your life? What are you doing to rid yourself of shame?

Successful Vitiligo Treatment? Narrow Band UVB Phototherapy and Elidel

Written by . Posted on June 24, 2011. Filed under Dealing with vitiligo, Getting Rid Of Vitiligo, My Story. 9 Comments.

Are there successful vitiligo treatments? Yes.

There are a wide range of treatment options these days. I was introduced to several by dermatologists. The first treatment that I was prescribed was Narrow Band UVB Phototherapy for my vitiligo. On the website of the dermatologist I used it says that this treatment is a good option for widespread vitiligo, only takes a few minuets per session and has been successful for thousands of people. On the downside there is “long-term skin cancer concerns.”

Hmmm. Let’s consider this for a minuet. Your pigment will most likely regrow, though by no means is this a cure and in most cases when the treatment ends your vitiligo will spread and the trade off is increased chances of getting cancer which might kill you.

Increased chance of deadly disease for which there is no cure so that you can have some of your pigment back temporarily. You look better but you are this most closer to being dead from a painful disease. That does not appeal to me anymore. Also, the idea that the treatment sessions for Narrow Band UVB Phototherapy for vitiligo are short is false. They are short in the beginning. As the treatment progresses as it must, the sessions get longer. I was at the point where I was getting treatments 3 times a week and sessions we lasting 50 minuets per session. 4 hours our of my week for a more normal skin pigment and am increased chance of getting skin cancer.

I asked the nurse practitioners about the cancer risk. “Oh its not really a big deal.” Really? Its not a big deal. It is to me!

I should mention that the pigment did regrow after a couple months of treatment. When I stopped after 9 months the pigment started going away again. Would I have to spend quite a bit of time in treatment sessions continually, for the rest of my life to keep my skin looking normal? Also, I did get a nice tan on the spots that did have pigment. A plus I suppose.

How do we define success when it comes to vitiligo treatments. Normal skin pigmentation? Is that it? If the answer is yes, normal skin pigment is all we are after regardless of the side effects, then there are successful vitiligo treatments.

I think we ought to ask ourselves what is the price of being normal or beautiful. Are we willing accept a potentially shorter life in order to have a standardized skin tone? I am not willing.

That same dermatologist prescribed a topical immunomodulator called elidel also know as Pimecrolimus Topical. (You can read more about elidel/Pimecrolimus Topical on this National Institute of Health website maintained by the US Government. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000236/)

If you clicked that link you may have read the first line which I will include here: “A small number of patients who used pimecrolimus cream or another similar medication developed skin cancer or lymphoma (cancer in a part of the immune system).” The FDA required the drug manufacturer to place a black label on elidel because of the side effects that warned people of the risk. My doctor did not warn me about these risks.

I asked the nurse practitioner about elidel. I asked her: “What does it do?” She said, and I will never forget her response: “We don’t know. But we have found it to be helpful with vitiligo patients.” Really? You don’t know? We don’t know? Who is we exactly? The FDA seems to know something about what it does. The drub company that made the drug most know something. “We dont know…”

Curious about what elidel does? From the NIH website: “Pimecrolimus is used to control the symptoms of eczema (atopic dermatitis; a skin disease that causes the skin to be dry and itchy and to sometimes develop red, scaly rashes). Pimecrolimus is only used to treat patients who cannot use other medications for eczema, or whose symptoms were not controlled by other medications. Pimecrolimus is in a class of medications called topical calcineurin inhibitors. It works by stopping the immune system from producing substances that may cause eczema.”

“Stopping the immune system from producing substances that may cause eczema.” Seems fairly clear. As you may or may not know, vitiligo is an auto-immune disease. The bodies immune system attacks the cells that creates pigment. So, immunomodulators like elidel are helpful when you want to stop your skin from being depigmented by the immune system.

The dermatologist’s staff just lied to me. I should have walked away right then. I worked with that dermatologist and his staff for another 9 months or so. I should mention that this dermatologist is quite well established in the South Bay Area/Peninsula.

More cancer risk? Two treatments were prescribed that increased my risk of cancer. No warnings. They just sold me. They sold the insurance companies too on the the idea that increasing my risk of cancer was good for my health. Over the course of those months in treatment I cost my insurance company tens of thousands of dollars. What if I get cancer 20-30 years from now? How much will that cost an insurance company? Is this a wise course of action?

There are more options of course. The strange thing is that almost all treatments have serious potential side effects. You get treatment for a disease that is not at all life threatening and your chance of getting a deadly disease increases.

What is normal skin pigmentation worth? And can we get rid of vitiligo without deadly treatments? These are questions I would encourage anyone to ponder.

Everything is waiting for you. From David Whyte

Written by . Posted on June 10, 2011. Filed under Dealing with vitiligo, My Story. No comments.

A friend of mine sent this to me. It’s beautiful and addresses our struggle to be ourselves, comfortably, in the world. I struggle with wanting to be out in the world from time to time though, most of the time my more healthier desires win.

Thoughts like these are encouraging and I hope everyone that struggles with their own sense of self and self worth takes a few moments to read this:

Your great mistake is to act the drama
as if you were alone. As if life
were a progressive and cunning crime
with no witness to the tiny hidden
transgressions. To feel abandoned is to deny
the intimacy of your surroundings. Surely,
even you, at times, have felt the grand array;
the swelling presence, and the chorus, crowding
out your solo voice You must note
the way the soap dish enables you,
or the window latch grants you freedom.
Alertness is the hidden discipline of familiarity.
The stairs are your mentor of things
to come, the doors have always been there
to frighten you and invite you,
and the tiny speaker in the phone
is your dream-ladder to divinity.

Put down the weight of your aloneness and ease into
the conversation. The kettle is singing
even as it pours you a drink, the cooking pots
have left their arrogant aloofness and
seen the good in you at last. All the birds
and creatures of the world are unutterably
themselves. Everything is waiting for you.

Answering questions people ask about about vitiligo

Written by . Posted on February 6, 2011. Filed under Dealing with vitiligo, My Story. 21 Comments.

How do you answer people when they ask you about your vitiligo?

I like to be as upfront as possible. The other day my buddies girlfriend asked me what was wrong with my hands. She thought I had been painting recently. She was curious. So I told her I have vitiligo, the autoimmune disease. She has arthritis so she knows what autoimmune means and we moved on to another topic.

This is just a recent example of something that happens on a regular basis with me. My experience is that the only people that ask about the lack of pigment on my skin are the people that care. There is sometimes a note of confusion or concern in their voice, sometimes an awkwardness. But never has anyone asked about what is wrong with my skin unless the were genuinely interested in my well being. I appreciate the concern and while I don’t always appreciate having to explain that I have a disfiguring disease that will only get worse, I do like that people feel comfortable enough to voice their questions and concerns and I really like getting the disease out in the open.

I think this is different for adults. Kids can be mean. Some people commenting on the blog talk about how hard it is to make friends with highly visible vitiligo. This can be particularly hard for people with darker skin tones where the contrast is stark.

What can you do? It is possible to define yourself as something other than the person with the skin disease. Even for me, with this blog and my friends knowing about my disease, it’s not something that gets much discussion. Generally I don’t talk about it, or think about the fact that I have vitiligo. I find that the more attention and head space I give to my vitiligo the more than it brings me down. The more I focus on the things that matter the less attention it gets. If I focus on my work, my friends, on food, on fun, vitiligo becomes far less important. It really does not have to effect me. It does sometimes and yet I have a measure of control over whether or not I allow the fact that I have a disease to be significant. I am able to exercise control over my perspective and so I can also exercise control over other peoples perspective. This is a strength we all have. We live in worlds of meaning we create together. Just because I have vitiligo doesn’t mean my world is coming to an end.

The best fish tacos in the Bay Area: Huipil Cafe

Written by . Posted on January 11, 2011. Filed under Dealing with vitiligo, Going Gluten Free, My Story. No comments.

I love tacos. I love fish tacos, pollo tacos, al pastor tacos, asada tacos. I love tacos. I am not a taco aficionado exactly, but I am an enthusiast. I have been to almost 100 taquerias in the Bay Area and Peninsula. There are maybe ten that I frequent on a regular basis. But…

A couple weeks ago I was introduced by a client to a new place: Huipil Cafe. This place is a cut above any other Mexican restaurant I have been too. The food reset all my expectations. The fish tacos? Best I have ever had by a good measure. I can’t stop telling people about these tacos. Today I had lunch there with a couple friends. Third trip in 2 weeks. Yeah, its that good. One of my buddies said that we will sign up for yelp just to give these guys a good review. We all were in agreement. So are 58 people on yelp to date by the way: http://www.yelp.com/biz/huipil-redwood-city

The chips are good, home made tortillas, freshly fried each day and seasoned. The seasoning goes extremely well with the salsa and guacamole. The menu has a mix of tortas, which are fantastic I am told, as I am gluten free I have not had the pleasure myself, tacos, crispy tacos and breakfast items and daily specials. The daily specials are pretty good. The chicken mole is quite nice. The crispy tacos are the best ever. I have now had the fish, pollo, camarones, and al pastor. The fish, camarones and al pastor are on par with each other. Just great. Really great.

I want to go there for dinner and then for lunch again tomorrow. I want to keep going until I get sick of this place. I want to keep going until I can’t imagine going there again. I want to know how long it will take. Ten trips in a row? 100? I think it would be a good long while.

A year and a half ago, I stopped working for a company that is in the neighborhood of Huipil Cafe. This neighborhood, within a mile radius, has over 20 Mexican restaurants of all kinds, mostly taco and burrito shops. I have been to all of them. I used to love these places. Still do. About 6 months before I stopped working at this company, my performance degraded significantly. I just could not imagine continuing to commute to work to do something I could not imagine doing. The thought of returning to that job, commuting on a daily basis to this place where I used to work makes me want to puke. Yet the thought of making that same commute to get these tacos makes me rejoice. I can’t wait to get there. I could commute every day for these tacos. If you live in the SF Bay Area or you are visiting the SF Bay Area, I would recommend this place to you highly. In fact, I would love to take you there. Leave a comment and let’s meet up for some life changing tacos.

Any new things in your life bring you joy, surprisingly?

Celiacs Disease and Vitiligo

Written by . Posted on October 21, 2010. Filed under Getting Rid Of Vitiligo, My Story. 5 Comments.

Earlier this year I decided to stop eating gluten and wine. Several months previous to this decision I started to pay close attention to how I felt after each meal with particular attention paid to how I felt after eating foods like pizza, pasta, sandwiches and other gluten rich foods. I noticed that after a gluten rich meal I would feel sluggish, fatigued and on occasion I would develop a headache. So I decided to give up gluten completely. It was a fairly simple choice after I recognized that gluten effects me negatively. I don’t like feeling tired. I don’t like headaches. So I stopped eating things that made me feel terrible. For me it is that simple.

One month later I considered my progress. I don’t ever feel sluggish like before no matter how much I eat. I can eat a whole box of quinoa pasta and I will not experience any sluggishness or headaches. I feel stuffed and I feel energized. Huge difference for me.

Now looking back I see that dropping gluten from my diet has been hugely beneficial for me. I have lost a few pounds, though nothing too exciting, I have noticed some repigmentation on my right hand where most of the top of my hand was without pigment and I think I have had repigmentation in other areas though it is not as clear. I started to do some research into gluten allergies and Vitiligo. Seems like there is a correlation for many people between Celiac’s disease and Vitiligo. This is the case for me. Is this the case for you? Would love to hear from people that have Celiac’s disease and Vitiligo, or have Vitiligo and wonder if they have Celiac’s.

Getting Vitiligo On The Face

Written by . Posted on August 22, 2010. Filed under My Story. 16 Comments.

Recently I have noticed more and more that my vitiligo is working it’s way around my face. This is an unwelcome development. I am aware that vitiligo spreads and contracts over time in an almost random fashion. I have hoped that my face would stay clear of the disease and yet still my fears have been realized.

Slowly, I have developed spots on my neck and around my lips and around my eyes. While it certainly is not something to be happy about, I have come to accept this as a fact of my life and move on. I try to spend as little time as possible thinking about this. No one has said anything; I don’t think too many people pay much attention to my face and its coloration. Still it does bother me. I know it could go away or it could spread further.

If I want I can always cover it with makeup or self tanning creams. I can cover it up no problem. No one would ever notice. And for some reason I don’t do this. I wear sun screen when I am going to be in the sun for a while, but I don’t use the self tanning creams/sprays. Why? Well, I don’t care as much as I thought I would years ago. It’s still my face, no matter how many colors make up my face and I am still me.

Vitiligo and Flip Flops

Written by . Posted on February 27, 2010. Filed under My Story. No comments.

I don’t have anything against shoes. I like shoes just fine. But most days I wear flip flops. Flip flops have been my footwear of choice for at least ten years. And then my vitiligo started to spread to my feet.

The patches started with a spot here and a spot there. They grew over time to include wider patches of my feet and toes. At first I could wear the sandals and they would cover the vitiligo patches. The only people that would know about my vitiligo were me and the people I talked to. And then that changed.

Slowly as the vitiligo spread across my hands and feet people noticed. People that I worked with were concerned and would ask. Which was great because it is therapeutic to talk with caring people about vitiligo when you have vitiligo. I generally don’t like to be the center of attention in social situations. I don’t mind when it happens occasionally. And as long as people were nice, inquering about the disorder and then went back to business as usual, I was very comfortable talking about it.

Even so, I went out and started shopping for shoes. I got some nice shoes too and I enjoyed them. The reason I went out and bought a bunch of shoes was because I did not want people to see the white patches on my feet. My hands I didn’t do anything about for a while. But I could cover my feet up. I stopped wearing shorts as much. In fact I still don’t wear shorts as often as I used to because of the patches on my shins and ankles.

About a year and a half ago I started wearing sandals again. Even more often than I had done so previously I wore sandals all the time. With slacks, when going out, staying in, washing the car, working in the yard, helping someone move, whatever I was doing, I was most often wearing sandals. I still wear sandals. I simply decided that it did not matter what someone else thought of my skin. If someone noted the lack of pigment on some areas of my skin then so be it. It has been healthier for me to live without worrying about what someone else thinks. And the fact is, no one really cares. I guess maybe someone has thought, oh thats gross, or what’s wrong with that guy but it really does not matter to me.

My friends refuse to allow me to lament my skin coloration. This has been sustaining. Without people that are able to tell me to get over myself and my fears and know how to actually make me hear them, I don’t know what I would be wearing on my feet. But today, in part, because of some great people I know, I am wearing sandals.

My foot in a sandal with vitiligo showing