Day 12 - Peanut Butter and Jelly

Today was the first day I made my own lunch, a peanut butter and jelly sandwich. It was a great way to save a little money and not to be so dependent on hotel food. Hopefully my bread will last for a week or so and if not, I can always grab something from the buffet downstairs in the morning or evening.

The interesting event in the solarium today was the use of honey to distract some of the flies. It was tried in the morning by another traveler and unfortunately, there were not successful results. Apparently, flies might be able to be distracted by using plastic bags filled with water. Who knows. At least I've incorporated "killing flies" as part of my routine in the morning and afternoon, which helps the time go by faster. It's so true that the more you look at time, the slower it goes.

I just got through the first book of the Lord of the Rings. It's good to get my imagination up and running again. It's been a while since I've had to make use of it so much.

Day 11 - Amman and Badminton

Today was my first day of freedom. I went to Amman with another American with a driver we set up through the hotel. It felt so good to do some sightseeing. We stopped by a gift shop then went to the Roman ampitheatre followed by the citadel. The highlight for me was lunch at Hashem. It was the most amazing falafel I've ever had in my life. The dipping sauces were phenomenal and I actually enjoyed eating the raw onion. And there were two types of falafels, one with an onion of some sort inside. It was easily the best meal I've had since I've been here and a welcome change from the same food served at the hotel. Then we went to a local supermarket, Cosmos, and did some grocery shopping. I got some PB&J, which I'm excited to have so I can make my own lunch. It's going to be a good break from the limited food options here.

A fellow traveler has been commenting on the need for additional recreation in the solarium. I definitely agree and we decided to purchase a couple badminton rackets. We were testing it out today but there is definitely something wrong with the birdie. It is deformed and doesn't exactly fly straight. It's something to be addressed.

Regarding the treatment, I think it's a good thing that I can't even remember what day of the treatment it is. Though I have noticed a very, very small pigmentation in areas that already had small pigments. Very, very small. I have seen nothing new. It's very hard to notice unless you've been looking. I've already decided that I don't want to waste too much time looking for little dots. It's healthier too.

The weather in the late afternoon and evenings has been amazing. I feel like it's cooled down considerably since when I first arrived.

Day 10 - Positives and Perspective

So it is true. I had heard from others that my skin would feel softer, supple, and sensitive from the sea minerals, sun and pseudocatalase. Yes, it's true.

I like the phrase, "it gets worse before it gets better." I think it applies to surgeries and really, a lot of things. It tangentially applies to my situation. I say "worse" just because I look darker in my non-vitiligo areas, which makes my spots stand out even more. So some might say it doesn't help, but it's part of the process. I've even discovered a few that I wasn't aware of because they blended it well into my then paler complexion.

There are a number of unexpected benefits from vitiligo that I can attest to. Certainly, there are some not positives from this experience, but it's important to consider both sides of the stories as much as it is possible.

1. Affirmation of my uniqueness. I think people are afraid to be unique amidst culturally defined expectations. This is a visible reminder of that. It reminds me of X-Men a little bit and how they struggled to gain acceptance when in reality, it was a good thing they were not not X-Men.

2. It makes you less judgmental towards others. It's well accepted that people make snap judgments about others based solely on their appearance. Physically, how we look, is a big part of who we are. And it usually takes time for people to see beyond the outer appearance. It definitely makes me less judgmental of others' appearances. What is more important is who the person is, the spirit or soul that drives himself/herself. It's what people can't see but what I can see a little better now.

3. Increased compassion/empathy. One of my friends said, "we all have a little vitiligo in us but the difference is that I can see yours." People with vitiligo can't help but understand those that are physically marginalized better because there are some shared human experiences. On a side note, I just saw the French movie "Intouchables." Great movie. It's not so much that it paints the handicapped main character as a hero, but instead, provides an awareness and education component that is often extremely difficult to have the courage to take on. Most people don't want to talk about it.

4. Weeds out good/bad people. It's amazing how quickly you can filter out people based on their reaction to something like vitiligo. Some are genuinely interested, some art, and some are extremely judgemental. It's hard to say that it's a person's fault as I believe it is mainly a product of their upbringing. Instead, I think it's important to re-shape their environment by adding another data point to their experience for future reference with others. Obviously, everyone has their own journey.

5. Helps me value my identity beyond my looks. This is ultimately a good thing and rests much on one's value system. No matter how good-looking, ugly, overweight or underweight you might be (relative to a culture's defined standards), those things change and it's better to invest time, energy, and weight on who you are rather than what you look like.

6. It's connected me with so many good people. This is probably the biggest positive out of everything. I've met some of the most amazing people and some of my personal heroes through this. Without this, there would have been no way I would have been able to connect with these people and to learn about everyone's stories. 

7. An appreciation for the functionality and limits of the human body. Nobody's entitled to "good health." And through learning more about the human body, its pathways, cellular signaling, etc. I'm amazed more and more at this complicated machine that chugs along each day. It's amazing and I'm grateful for everything that works well and those who are studying why things don't work properly.

8. It's given me a platform to reach others. Just being a regular Joe is good but also boring. Now, all of a sudden, I have a voice where people in similar situations or doctors are genuinely interested in the things that I have to say. I can do more good than the previous good I could have done before. It's both a privilege and a responsibility.

Despite the cliche, it's truly not what happens to us that defines us, but how we respond and what perspective we take.

Day 9 - Managing Expectations

Managing expectations is probably the most critical piece of any treatment, but perhaps particularly for this type of treatment. Unlike my psoriasis friends, who have seen tremendous improvements over the course of several days (I'm very happy for them), it is not such the case for vitiligo. Before I was taking pictures and trying to document changes, but this will not happen over the course of days. Months and years is the better unit here. At the beginning, I was full of unbridled hope and excitement. No matter what you read or what people tell you, you always think you're going to be the one to re-pigment in a matter of days and prove everyone wrong (obviously, it's good to be hopeful/positive but realistically so in order to avoid disappointment down the road). Now I have calibrated my expectations much better. Certainly, it's not a bad thing to have hope, but to manage my emotions, it's better to keep any possible positive results in check. My current expectations: to have an amazing tan and pink spots instead of white ones when I leave. My tan looks incredible. Repigmentation is another story. The time here is just a kickstarter for the greater longer treatment to regulate hydrogen peroxide levels over a period of time for stabilization.

This type of treatment plan is a marathon not a sprint. I met a fellow traveler who did this treatment for 6 years and has seen tremendous results. He was very diligent in his treatments and yet he's still trying to maintain and stabilize a couple small areas on his body. This is a lifelong lifestyle change. This is the new normal.

Feeling a little tired. Will probably sleep a little earlier tonight.

Day 8 - Flies, Flies, and More Flies

I'm not sure why, but there seem to be more flies the past day or so than before. The best gift I received so far has been the fly swatter from a previous traveler. I now relish the mere killing of a single fly. It makes the time pass much faster. One of the other travelers even joked he would get me a giant fly swatter when he was going into town today. But I am nothing compared to another traveler. If I were a fly, I would not go near him.

The water has been pretty calm the past couple of days. I could not say the same a few days ago. In the morning, there was some decent-sized waves. I was actually the only person in the water then, but it was also pretty quiet anyways. It made me feel pretty special: it felt like I was the only person in the Dead Sea in the whole world.

I had read that my skin would feel a little softer than usual due to the sea minerals and the pseudocatalase and I would have to agree with that after 1 week. I've also overcome the psychological hurdle of thinking that I'm going to get sunburned. With my skin type, it's not going to happen. I've also gone the full 15 minutes on each side today and I feel good overall. I don't anticipate any problems over the next couple of weeks.

I'm not sure why, but the spaghetti tasted really good tonight. As did the grilled beef, which I threw on top of it.

Day 7 - 1 Week Anniversary and Routines

Congratulations to me on my 1 week anniversary! It’s gotten a little easier but I know it will also get a little harder since I will be doing the full 15 minutes on each side. In total, I should be sunbathing for about 1 hour and 15 minutes in the morning and then also in the afternoon.

It’s amazing. I think much of this is psychological but there’s no way I’m going to sunburn here so I should feel comfortable sunbathing for a little while.

Here are a few routines I abide by:

1.       Open the balcony door window upon returning back to room to clear out cleaning chemicals from the room clean.

2.       Apply pseudocatalase cream half in the bathroom and half outside.

3.       Use fly swatter to destroy all fly life forms.

4.       Have my special vegetable juice cocktail at 10am with vitamin supplements.

5.       Enter the Dead  Sea from the northern end. Definitely fewer pebbles and more sandy than the Southern end.

Day 6 - Unexpected Positives

Day 6 is done. 

I thought I'd touch on a few unexpected positives so far.

1. No mosquitoes

The climate here is hot but so dry. I've seen 1 mosquito during my whole time here. I'm not even sure how it got around here. On the downside, the flies seem to have made up for the lack of mosquitoes. Flies are resilient little creatures. 

2. A nice little balcony in my room

I didn't expect to have a balcony room facing the Dead Sea. It's basically useless for most of the day because it's so hot but at night, it's perfect. It's a great way to avoid the air conditioning of the room and soak in the higher than normal percent oxygen in the air. 

3. Simple and relaxed predictability

It is crazy but I know exactly what I'm going to do at the exact time. I have my routines down. I've scheduled my room cleaning at a specific time. I know when I'm going to be in the water or in the sun. Now I just need to take a side trip or two starting sometime next week to explore more.

Treatment-wise, felt a little itchy on my chest area. But what's crazy is that I have not experienced any sunburn at all. I'm just pink. In any other climate, I'm pretty sure I would be a lobster by now. And this is all with no use of any sunscreen at all. I've also been testing out different ways to get the sun best. I think I've resolved to stand and move around rather than lie down. Lying down actually causes you to sweat more since your body is in contact with a towel and/or a sheet instead of getting fresh air. This causes some of the pseudocatalase to wear off a bit more too. So I've decided to start pacing a bit instead. Now I have to be careful about the angle at which the sun hits my body so it doesn't fry my head or my shoulders.

Day 5 - Down then Up

I can't believe Day 5 is in the books. Today started off a little slow as I didn't have huge motivation to go down into the water today. There are so many steps to go down to the water then up to the solarium. I counted 68 steps to go down and I think 148 to go up (have to recount). Since my sandals are not made for steps (what sandals are?!) I decided to carry them around so as not to irritate my foot, mainly my left. Today was also down then up because I had a minor existential crisis this morning of "why am I here?" For me, it's normal so no big deal, but still. The treatment plan is so long and I know everyone is so impatient. It's hard to put one foot in front of the other, one treatment in front of the other and say, "let's focus on what happens a year from now and look forward to that time."

My skin felt pretty good today. I decided to go 7 minutes on each side and there was definitely less itch (though minorly still there). I decided to change things up a bit by using my portable fan more, wearing sunglasses in the water (definitely helpful), and decided to be more aggressive about swatting the flies. I think I killed 5 flies today, which I'm happy about.

Today I had my "special" juice this morning an hour later since the chef was waiting for a delivery of fresh carrots. No biggie. I wonder what my body looks like at the cellular level compared to how it usually looks. Hopefully there's a lot of positive stuff happening that I can't see.

A discovery I made was regarding "Emily's Story," a story written by the father of Emily, who has vitiligo. Apparently, he used a gluten-free diet and she seemed to have a really good response. Unfortunately, the link is not working. I wonder if they decided to just focus on selling the paper copies instead of allowing all the content to be free on the web. I may check it out if I have time.

Day 4 - Challenging Day

Today was definitely the toughest so far. It's beginning to feel a bit of a grind doing the treatments, being here, and stuck living in a hotel. It's definitely all mental. And it can be hard to look at the spots and see that they look exactly the same, just a little pink. It's a marathon not a sprint and just have to keep plodding along, controlling what I can control, and trusting the process.

I basically did the same routine as yesterday. For some reason my head felt a little sensitive today. Not a big deal, but perhaps due to the fact that I did a fresh shave on it last night and it got a little more sun on it.

Yesterday and today have also been a battle with the runs. I think I have a mild case of traveler's diarrhea from a salad at the hotel restaurant. I guess it's bound to happen so nothing new but just not fun. Hopefully it will be done by tomorrow. I've already felt it slowing down. Yesterday was rough though. Felt like someone put a clamp on my stomach. But I still have to eat and drink water to stay nourished. That was a little bit of a challenge.

My hands have started to get a little pink, which is good. I'm just going to try to keep all the lesions on my body at a healthy pink. I actually ramped up to 7 minutes on each side in the morning but then pushed it back down to 5 in the afternoon. I definitely felt some itch in my chest and groin area so want to make sure I'm not going up too quickly. I'm thinking that I'll probably use this week to do 5 minutes on each side, then next week up to 10, and then the last week I'll try to do 15.

I was also curious what kind of UV rays I've been getting. Apparently it's more of the UVA (longer wavelength) than the UVB (shorter wavelength), which I think is good. I believe UVB can cause more damage and due to the location, air, etc. of the Dead Sea, the UVB rays are attenuated, or weakened so it's much easier to stay outside with the UVA rays without getting sunburned.

I spoke with another traveler here who is getting psoriasis treatment. Man, I had no idea how bad it is. He said it's always itchy and he's trying to keep his body moist. It's affecting dating life, work life, etc. He's actually on medical leave right now. From a lifestyle perspective, I definitely can't say I have it worse than him. But we all have our own stories and challenges.

It's also important for me to have small wins and routines throughout the day. I've been doing 75 pushups each day, watching 1 movie a day, and trying to read some more books.

Today's internet was definitely the best of all the days.

Day 3 - Slow Internet, Laundry

Man, this internet has been so inconsistent and most of all, really really slow.

In any case, day 3 is complete. One treatment, one day at a time. I feel pretty good about the pinkness I've gotten in some areas, but it's also a real challenge getting to the harder spots (under my jawline) or the more stubborn ones (one my hands).

I'm not sure what it is, but feel like I may have gotten minor water bacteria in me. Had a case of the runs since the afternoons but still trying to stay hydrated.

I also decided to do laundry tonight. The laundry prices are insane at the hotel, like around $6 USD for a simple shirt washing. In any case, I'm glad I brought some portable laundry detergent. But laundry won't be a huge issue here, considering I spend most of my time in bathing suit and sandals.

While yesterday was a zoo at the hotel, today was much more quieter. Perhaps because of the huge tourist groups that have come and gone.

I'm also considering doing a trip out to Jerusalem as my one overnight trip near the end of my treatment. Someone was telling me staying overnight in Bethlehem would be good as well.

I heard that a group from Germany and I believe Denmark as well have come for treatments. So perhaps more friends and people to spend time with.

Day 2 - A Little Community

I just finished Day 2 of my treatment. This means I am about 10% there. I noticed that I have a nice pink color in some areas but am still waiting to get a little bit of pink into others. The hands, for example, are going to be difficult, but I did notice a very faint pinkness to them, even after only 2 days. In talking with another vitiligo patient here, I realized my regiment is a really good guide for first timers but there are advanced techniques and contortions that I need to do specific to me and my body’s lesions. The spot under my right jaw bone is going to require some posing as will some spots on my arms and my hands. The goal really is to get pink all the visible spots.

I thought I was getting better at navigating the Dead Sea but I got a ton of salt into both of my eyes on one trip. That hurt a lot. It’s tough also because you can’t wash it out with your hands, which will only make it worse.

I’ve gotten to know a few of the other patients here as well. It’s great to share stories and have a small community. The first guy I met is actually leaving tomorrow, but there’ll be a group of 12 from Germany coming in tomorrow. One of the quotes I liked from tonight was “There’s a fine line between being pink and being sunburned.” Hopefully I’ll get to meet and know some of them during my time here.

Day 1 - Sweimeh, Jordan at the Dead Sea

Today I finished my first day of treatment here at the Dead Sea, the first of 21 days. The basic treatment plan below is performed once in the morning (ideally all before 10am) and and once in the late afternoon (ideally after 3:30pm):

Bathe in Dead Sea for 15 minutes
Rinse off salt with water (no soap)
Apply pseudocatalase cream to the whole body
Then sunbathe in the solarium (without clothes in gender-specific areas) on your front, back, sides, and any private areas. This is done starting out with 5 minutes on each side, then slowly progressing to 15 minutes on each side over time.

I recently realized two quick items: 1) to get to hard to reach areas you must contortion your body to ensure that the sun can reach it and 2) you must be careful with all the sweat dripping down that the pseudocatalase does not all get wiped off (since it is activated by the sun). Thus, to stay hydrated, you must purchase a lot of water. You will likely go through 3L of water per day. Fortunately I was able to go shopping with the help of a local Jordanian driver to buy 18L of water to get me started in addition to the free daily 1L I receive in my room.

Even after one day of treatment, some of my larger white spots are a little pink, which is good! Red is bad. I'll just have to monitor this well moving forward.

I am currently staying at the Dead Sea Spa Hotel (http://www.dssh.jo/), but I've had an overall great experience so far. The employees are all very nice and the facilities/room is quite nice. I'm staying here mainly because this is where Professor Schallreuter comes and seems to have all the resources I need for my treatment plan.

By the way, after 3 years of doing excimer laser treatment and protopic (with minimal effect) I've decided to try out Professor Schallreuter's treatment plan, which involves pseudocatalase and narrowband uv-ray application. Though not necessary, I also decided to start this treatment off with a bang by coming to the Dead Sea since I have the time and resources (though still questionable) to make this happen. I'm also trying to treat this as much of a vacation as I possibly can. I want to make sure that this is not only my experience but also an experience for everyone interested to learn more about this. And besides, it gives me something to do!

I just saw Professor Schallreuter for the first time earlier this week at her office in Greifswald, Germany (http://www.vitiligo.eu.com/home_en.php). Finally being able to meet her and and Angela in person was great. In my opinion, I believe they are absolutely not only the world's foremost experts on vitiligo but also the most passionate and medically committed to the cause that I've encountered. I know there's a lot of ideas on possible causes and treatment plans for vitiligo but I think I really do fall into the camp of trying to minimize the oxidative stress in the skin (thus the idea for reducing hydrogen peroxide levels in the skin through pseudocatalase). Obviously this is a personal take, but having studied chemistry, this seems to make the most scientific sense at the moment. It's certainly not a cure by any means, but it seems to have the most scientific evidence for me.

Introduction to Dead Sea Vitiligo Treatment Blog

Hello, world. My name is Ed and I have vitiligo and I wanted to create a blog of my Dead Sea vitiligo treatment journey to provide more information for the community out there (and also to provide a log of my experiences). I realized that there were not so many sources of information when I was researching and also because I benefited so greatly from the few resources that are already out there. I know most people are not able to make a trip like the one I am making so I wanted to share my experiences. Here are two that have inspired me:

Young girl's Dead Sea vitiligo treatment experience:
http://darcydeadsea.blogspot.com/

American Vitiligo Research Foundation (AVRF) blog as well as what to bring:
http://www.avrf.org/news/deadsea_float.html
http://www.avrf.org/news/deadsea_tips.htm

I also want to give a special shout out to my friends at the Southeast Michigan Vitiligo Support Group (@SE_MI_Vitiligo) and also to Lee Thomas (@leethomasfox2), from whom I learned about this treatment. You guys rock and your experiences and stories encourage me all the time.  You're all beautiful regardless of your skin color and perhaps, sometimes I think, because of it. There are many benefits to having vitiligo, which I'll try to touch upon in a later post.