Day 18 - Exactness and Thoughts on Treatment Value

When I consider my next treatment session, I actually do consider a number of various factors, which include the following items below:

-Level of absolute pinkness of spots

-Level of relative pinkness of spots

-Angle at which the sun hits the spots

-Time of day

-Shade or no shade

-Level of visibility of spot/value to me

-Pain/itchiness, if any

-Body part (for example, hands and feet can take more vs. the face)

-Amount of hair cover on area

I try to consider and adjust accordingly, depending on how I feel. While I do state earlier that the treatment is not exact in many ways, I do try to listen to my body and understand what it is telling me.

If you're reading this now, you're probably considering coming to the Dead Sea for treatment for you or a family member or at least curious what it would be like. In my opinion, I don't think it is an absolute necessary to make. It seems like pseudocatalase and home light therapy works well on its own. But with my personality, I need to know that I'm doing everything possible that I can, even if the results may not match with my expectations. I think most people expect to see more immediate results at the end of the treatment here rather than waiting a few more months (if not longer) to see the full effect. As such, I'm pretty sure most people are disappointed in the Dead Sea treatment alone, which is understandable, given the intense time and money that you make to do this and also the impatience for fast results. It is not an easy treatment to do by any means. If you are not fully committed to this, it is probably not the best treatment plan for you. Though difficult, it's best to see this with a long view, to know this is not a stand alone treatment, but just the start of a longer journey. And it is really quite common for people to come back multiple times here in the future too. That being said, I'm glad I chose to do it even though I have yet to carry out the full treatment beyond the start here at the Dead Sea.

Day 17 - Weather and Sunbathing Must-Haves

The past two days have been the cloudiest in the past two weeks, which surprisingly, is not that cloudy. It's all relative as all this means is that I sometimes have to wait 5-10 minutes (gasp) for full, direct, non-cloud filtered sunlight. It's really amazing how quickly the weather has gotten cooler in the two weeks since I've been here. When I first arrived, the weather was typically a high of 95 Fahrenheit (35 Celsius) and a low of 80 Fahrenheit (27 Celsius). Now it's a high of 74 (23 Celsius) and a low of 55 (13 Celsius). It's much more pleasant now than it was before. I still have my sweat-drenched moments here in there while sunbathing but the cooler temperatures and a little more wind, it's pretty nice.

Regarding my must-haves for my twice daily sunbathing, here they are with a brief description of how I use it. These are my "office supplies" for my current job:

-krama: This is a Cambodian light scarf so I can cover myself when I go out or come back in for indoor decency purposes. It also gives me great eye coverage when I need to lay down with the sun directly overhead.
-pseudocatalase: Obviously, this is what I apply to my whole body before sunbathing. For those wondering, I would say you would 500mL, or 1 bottle, for about 25-30 days. I will definitely go through a whole bottle during my stay here.
-sun hat: This was more useful when it was hotter, but still gives me a nice shade if I want a little cooler feel.
-water bottle: I fill this 1 liter bottle with Gatorade powder also to give me some flavor and some extra electrolytes to expedite the hydration process.
-portable electric fan: This was useful when it was hotter, but now I mainly use it to ward off flies near my head.
-fly swatter: This is critical for maximum comfort while sunbathing and also a nice hobby to have to pass the time.
-watch: I just use my iPhone clock to make sure I'm keeping appropriate bathing and sunbathing time.
-towel: This is useful to dry off any sweat or water from my body and also provide coverage for any areas that I may not want to get extra sun.
-sunglasses: These are useful, but not something I use all the time. In fact, I usually don't use them.
-sunblock: I do not use this since I have not had to, but it's still good to have just in case I need to use it on overexposed areas.

Tonight was my last Saturday night here. Less than a week to go.

Day 16 - Vocabulary and Thoughts on Sun's Rays

I just wanted to provide a few terms you may run across when trying to best understand this treatment. It is a combination of the following vocabulary:

Melanogenesis: the process of the body creating more melanin, or pigment in the body

Balneotherapy: treatment/therapy due to bathing

Heliotherapy: treatment/therapy using the sun

pseudocatalase: an artificial catalase (enzyme) that helps remove high hydrogen peroxide levels from the sun; this is activated by sunlight

This morning I wanted to go a little later to get some stronger rays. I planned to stay until 10:30am but instead finished around 11am. Part of me is almost sunburned, but not quite. I didn’t want to get this close to getting burned but I think that was part of the consequence of staying out too late. I think I got a little more UV-B than I wanted to. It’s amazing how quickly you can see the effect on your body in such a short time.

My goal also right now is to try to get all my spots to be the same rich pink color. I’m getting there, slowly, but the hands are tough and a couple underneath my left arm too. I have a week to go so we’ll see how that works out. One of the things that surprised me a bit was the importance of the angle at which the sun’s rays hits your body. For example, while I lie down, some of the rays hit my arm at an acute angle but if I raise my arm up to get perpendicular with the rays, it feels warm right away. As such, I’ve been trying to manipulate my body’s angles and positions to maximize the strength of the sun’s rays.

Day 15 - Depigmentation Types and Thoughts on Repigmentation

Upon seeing depigmentation, it is easy to conclude that they are all caused by the same thing. But they are not. For example, I have spots that exist on their own, spots around scars, and spots around moles (halo nevi). My understanding is that they are all different biological pathways with unique and distinct pathways. All things are not created except for the fact that they are all likely caused due to some type of epidermal trauma. For scars, obviously, the epidermis was injured and the immune system had to respond. For moles, there is additional melanin and for whatever reason, the immune system has decided to target specific melanin of specific moles for depigmentation. Granted, some of these may re-pigment, but over a period of years. In most cases, I believe, they do not. And for the plain old spots, they are straight up vitiligo spots. The body is indeed a complex machine.

Regarding repigmentation, as everyone knows, there is no cure for vitiligo. That being said, I am currently here in Jordan at the Dead Sea to begin a particular type of treatment intended to counteract the symptoms of vitiligo, but will not address the cause of it. There has been evidence of some level of repigmentation. After day 15, I have seen a few dots of repigmentation that make me feel I can write a few thoughts and observations regarding the process of it. These are merely conjecture as I am not a physician. I noticed that the already existing pigments are now becoming stronger. I have noticed less new repigmentation and more stronger repigmentation of previous pigment. I know that sometimes this can return darker initially before it corrects itself to match the surrounding pigment over a period of a few months. I also noticed that the sharp edges of some of the spots are now a little softer. There is definitely an interaction at the interface of the regular pigmented area and the depigmented spot. In a larger area of mine, I have noticed a 3-layered sandwich pattern: the pink of the white spot, a white transition zone, and then the regular tanned colored area. Whatever the magic is that happens at this region, I'm all for it. Lastly, it seems as though the repigmentation process may occur in a reverse chronological order from that of the depigmentation process. So, if a spot developed from the inside out, then the spot would repigment from the outside in. I had hoped that a few pigmented spots would appear in the middle of a lesion, but it does not seem to initially be the case.

Just a few thoughts on depigmentation and repigmentation.

Day 14 - Petra, Judgment, and Inexactness

Today I decided to check out Petra through a day trip. It was very impressive and I highly recommend checking it out. I feel fortunate to have also seen Angkor Wat and Macchu Picchu so it wasn't the first ancient ruin set I've seen. Nevertheless, well worth a visit.

One thing I've thought a little about is judgment among vitiligo patients. For example, I've noticed on several occasions other vitiligo folks checking the state of my vitiligo and certainly, I have done the same. This must be done with great consideration, however. Sometimes, I usually hear folks say, "you're fine. you don't need to do anything. I can't even see anything. So and so has it much worse." I understand where this is coming from, but at the same time, we need to respect where each person is coming from. Someone who has 80% depigmentation may be perfectly fine with himself while someone who is 10% may not have the same disposition to accept this new version of himself. Like many things in our world, we tend to first of all, judge others based on what we ourselves think we can and should handle and second of all, view others based solely on what you can see of them rather than what is the reality. I think it's important to have confidence and belief that the person is doing what he or she thinks is best instead of contradicting and casting further judgement. I believe it is better to assume the person has more information rather than less and is using that information to inform decisions that are best for himself/herself.

Medical treatment can be quite inexact and approximate. Today I did not formally get the sun I have gotten in the previous days, but because I've conditioned my body right now, I feel fine with not having gone gung-ho with "not missing any days." At first, I was vigilant on minutes in the water, minutes on each side of the body, etc. but now I know that I'm getting enough of everything and can approximate the treatment and respond to what my body is telling me. I've also come to accept the fact that I will likely look very similar to how I arrived here 2 weeks ago. That's okay. Anything worth doing requires time.

Day 13 - Dead Sea, Back, and Petra

One of the things people will tell you is not to shave before you get into the Dead Sea. I would agree. And any small cut or opening you realized you didn't have will quickly be felt. And do not get the water in your eyes if you can help it. There will probably be about 2 minutes of intense pain. I've been usually doing an electric shave to avoid potential cuts. I've also decided to grow back my hair. I just wanted to have my scalp spots exposed to both the water, pseudocatalse, and the sun. I have a nice tan on there so I'm fine growing it back for now.

Before I came over, I was not sure how I could apply cream to my back without the help of someone. I invested in a back applicator thing. I've used it a couple times, but I've become pretty good at just contorting my arms and hands to get to every little spot on my back. It's possible. You just have to use the three key options: behind your neck, on the opposite shoulder, then underneath from your lower back. I'm not sure what kind of life skill this is, but it is one.

Tomorrow is a trip to Petra, one of the world's wonders. Will be a nice long day trip but I'll still try to at least get a little water time.

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.