na rolling stones tem dizendo que esse foi o primeiro moonwalker do astro [ta na hora de aprender coxabamba]. em comemoração ao aniversário de michael, tá rolando na internet algumas fotos de como seria ele cinquentão, sem plásticas e sem vitiligo (?). abaixo uma delas:

* esse lance de vitiligo é uma viagem. michael jackson mermo ficou branco de uma hora pra outra velho. e as pessoas aceitam isso numa boa, isso que eu nunca entendi, nem vou entender. fazem estudos sobre a pedofilia never land , piadas com o nariz bizarro, mas ninguém gasta uma linha pra descobrir que porra aconteceu com a  pele dele. aceitam que foi vitiligo e pronto. o vitiligo não vai ficando degradê galera, ele aparece como manchas, a pessoa não vai ficando moreninha não. se esse lance de vitiligo fatality existir mesmo, é possível um bebê negão nascer 100% vitliguense e as pessoas acharem que ele é branco natural? imagina se jackson não fosse popstar? se ele trabalhasse como gerente de banco. um dia o cara é negão, no outro ele chega todo branquelo dando bom dia como se nada tivesse acontecido. ninguém ia aceitar, iam correr atrás dele com tocha e pedaço de pau. só iam parar quando ele soltasse a  verdade. reza a lenda que justin timberlake também nasceu com vitiligo, alguém já prestou atenção que ele era mais moreno na época do clube do mickey? eu já tinha percebido isso mas tinha ficado calado na minha. dizem também que aquela atriz pernambucana hermila guedes nasceu preta feito whoopi goldberg. dá nem pra notar né? é uma doideira.

What treatment options are available?

The main goal of treating vitiligo is to improve appearance. Therapy for vitiligo takes a long time—it usually must be continued for 6 to 18 months. The choice of therapy depends on the number of white patches; their location, sizes, and how widespread they are; and what you prefer in terms of treatment. Each patient responds differently to therapy, and a particular treatment may not work for everyone. Current treatment options for vitiligo include medical, surgical, and adjunctive therapies (therapies that can be used along with surgical or medical treatments).

Medical therapies

A number of medical therapies, most of which are applied topically, can reduce the appearance of white patches with vitiligo. These are some of the most commonly used ones:

• Topical steroid therapy—steroid creams may be helpful in repigmenting (returning the color to) white patches, particularly if they are applied in the initial stages of the disease. Corticosteroids are a group of drugs similar to hormones such as cortisone, which are produced by the adrenal glands. Doctors often prescribe a mild topical corticosteroid cream for children under 10 years old and a stronger one for adults. You must apply the cream to the white patches on the skin for at least 3 months before seeing any results. Corticosteriod creams are the simplest and safest treatment for vitiligo, but are not as effective as psoralen photochemotherapy (see below). Yet, like any medication, these creams can cause side effects. For this reason, the doctor will monitor you closely for skin shrinkage and skin striae (streaks or lines on the skin). These side effects are more likely to occur in areas where the skin is thin, such as on the face and armpits, or in the genital region. They can be minimized by using weaker formulations of steroid creams in these areas.
• Psoralen photochemotherapy—also known as psoralen and ultraviolet A therapy, or PUVA therapy, this is probably the most effective treatment for vitiligo available in the United States. The goal of PUVA therapy is to repigment the white patches. However, it is time-consuming, and care must be taken to avoid side effects, which can sometimes be severe. Psoralen is a drug that contains chemicals that react with ultraviolet light to cause darkening of the skin. The treatment involves taking psoralen by mouth (orally) or applying it to the skin (topically). This is followed by carefully timed exposure to sunlight or to ultraviolet A (UVA) light that comes from a special lamp. Typically, you will receive treatments in your doctor's office so you can be carefully watched for any side effects. You must minimize exposure to sunlight at other times. Both oral and topical psoralen photochemotherapy are described below.
  • Topical psoralen photochemotherapy—often used for people with a small number of depigmented patches affecting a limited part of the body, it is also used for children 2 years old and older who have localized patches of vitiligo. Treatments are done in a doctor's office under artificial UVA light once or twice a week. The doctor or nurse applies a thin coat of psoralen to your depigmented patches about 30 minutes before exposing you to enough UVA light to turn the affected area pink. The doctor usually increases the dose of UVA light slowly over many weeks. Eventually, the pink areas fade and a more normal skin color appears. After each treatment, you wash your skin with soap and water and apply a sunscreen before leaving the doctor's office.There are two major potential side effects of topical PUVA therapy: (1) severe sunburn and blistering and (2) too much repigmentation or darkening (hyperpigmentation) of the treated patches or the normal skin surrounding the vitiligo. You can minimize your chances of sunburn if you avoid exposure to direct sunlight after each treatment. Usually, hyperpigmentation is a temporary problem that eventually disappears when treatment is stopped.
  • Oral psoralen photochemotherapy—used for people with extensive vitiligo (affecting more than 20 percent of the body) or for people who do not respond to topical PUVA therapy, oral psoralen is not recommended for children under 10 years of age because it increases the risk of damage to the eyes caused by conditions such as cataracts. For oral PUVA therapy, you take a prescribed dose of psoralen by mouth about 2 hours before exposure to artificial UVA light or sunlight. If artificial light is used, the doctor adjusts the dose of light until the skin in the areas being treated becomes pink. Treatments are usually given 2 or 3 times a week, but never 2 days in a row.For patients who cannot go to a facility to receive PUVA therapy, the doctor may prescribe psoralen that can be used with natural sunlight exposure. The doctor will give you careful instructions on carrying out treatment at home and monitor you during scheduled checkups.

    Known side effects of oral psoralen include sunburn, nausea and vomiting, itching, abnormal hair growth, and hyperpigmentation. Oral psoralen photochemotherapy may also increase the risk of skin cancer, although the risk is minimal at doses used for vitiligo. If you are undergoing oral PUVA therapy, you should apply sunscreen and avoid direct sunlight for 24 to 48 hours after each treatment to avoid sunburn and reduce the risk of skin cancer. To avoid eye damage, particularly cataracts, you should also wear protective UVA sunglasses for 18 to 24 hours after each treatment.

• Depigmentation—this treatment involves fading the rest of the skin on the body to match the areas that are already white. For people who have vitiligo on more than 50 percent of their bodies, depigmentation may be the best treatment option. Patients apply the drug monobenzylether of hydroquinone (monobenzone or Benoquin*) twice a day to pigmented areas until they match the already-depigmented areas. You must avoid direct skin-to-skin contact with other people for at least 2 hours after applying the drug, as transfer of the drug may cause depigmentation of the other person's skin. The major side effect of depigmentation therapy is inflammation (redness and swelling) of the skin. You may experience itching or dry skin. Depigmentation tends to be permanent and is not easily reversed. In addition, a person who undergoes depigmentation will always be unusually sensitive to sunlight.

*Brand names included in this booklet are provided as examples only, and their inclusion does not mean that these products are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular brand name is not mentioned, this does not mean or imply that the product is unsatisfactory.

My parents never made sunscreen a priority for me as a kid. But, with K's vitiligo and my history of skin cancer, sunscreen will be mandatory to leave the house for my kids. I came across Blue Lizard Australian sunscreen. It's expensive and hard to find, but you can order it online. We're heading to the beach this upcoming week and I'll be sure to lather K in it. Nothing blocks the sun for her. I put 50 spf on her every two hours and she still gets a tan, only making her white patches stand out even more.

I'll have a full report on how it works when we return.

Once winter's here and the tan fades from her hands, the spots won't be so noticeable. But, I know when she returns to preschool, the parents will see them. I'm curious how it will play out. If I'll have to address it. People won't know what it is. They'll wonder if it's contagious. And I'll have to try really hard not to point out their ignorance.

mi spiace

ma se l'è cercata

e così io mi arrabbiai un po' (ormai ci sono abituato alle offese verso Michael) e commentai scrivendo così:

Ammetto che delle cazzate ne ha fatte, però è anche vero che i giornalisti se ne approfittano troppo di lui, perchè famoso in tutto il mondo. Tanto che la maggior parte dei ragazzi di oggi (i miei coetanei) lo vedono solo come un pedofilo (che non è) e persona che tradisce la sua razza. Questo perchè: perchè oggi la gente è talmente ignorante che crede a tutto ciò che viene detto in tv, come se le parole dei giornalisti fossero parole sante dette dal Papa. Ad esempio: come cavolo si fa a credere che gli sia cascato il naso? Cioè capisco che la gente è scema ma non sapere che il naso è composto dalla maggior parte da un osso... Come fa a credere che gli sia cascato? Solo perchè se l'è rifatto? So il motivo per cui lo ha rifatto e se volete ve lo scrivo pure. Tutto quello che ha fatto di bene invece non viene più ricordato!!! Ricordando solo una canzone posso affermare che Michael non è la persona a cui oggi viene assegnata una figura del caz..zo:

WE ARE THE WORLD

Ripeto sempre di pensare con la propria testa e non con quella dei giornalisti. Non dobbiamo far parte di quel gregge di pecore che va dietro al pastore (il giornalista). E' vero che non so tutto su quello che ha fatto, ma quel poco che ho capito cerco di ragionarci su con la mia testa e basta. Io non posso credere che Michael sia un pedofilo o chicchessia: una persona che va personalmente in Africa per i bambini, una persona che fa canzoni sulla guerra, sulla pace e sulla terra e che ha donato tantissimo per costruire ospedali e orfanotrofi non può essere un pedofilo.

Tutto questo male che gli viene attribuito viene dall'ignoranza della gente. Ma questo non vale solo per il fatto di Michael ma riguarda anche tutt'altro, e se non riusciamo a CAPIRE verremo controllati a vita. Ma ripeto ammetto che di caz..zate anche lui ne abbia fatte come OGNI PERSONA NE COMMETTE!!! Prima di parlare male della gente dobbiamo guardare quello che siamo noi. Questo è come la penso. Apetto commenti e le vostre opinioni.

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for those who do not know i am slowly losing the pigment on parts of my hands. it seems to be going from the fingertips in and its more noticeable when i get tanned. its so weird really. they dont know what causes it but it isnt bad or anything. there was some speculation that it may be an auto-immune difficency of some sort but thats all hogwash. its just a pigment disorder. theres little white spots on my elbows too. and two on my right wrist. i feel like a palamino pony.

bahahaha i just read that sisqo has vitiligo. and dogs can get it too!!! wicked!

i went job hunting today. and i remember how much i fucking hate it. too much effort for something that usually proves to be a waste of time. i wandered up and down main street drinking lemonade and trying to find places to painlessly leave a resume. 3 cafes, 1 bookstore, 1 vegetarian restaurant, 1 clothing store, 1 in a garbage can (seemed like a good idea...)

i meandered into a bike shop and asked the dude working if he had a map with the bike streets on it. he told me someone took all of his but to go to a place called 'our community bikes' which was about a block away. i went. slowly. my feet dragged. it was hot. and then i entered heaven. there were bikes and pieces of bikes everywhere. people running around with parts and wrenches. dreadlocked girls answering phones. dudes asking what to do about sprockets.

eventually a girl approached me as i stood there gawking and asked if i needed a hand. i asked her what it was all about and she told me. basically its a communal bike shop. people go there to fix bikes and learn about them. its cheaper than taking your bike in someplace and everything you need to fix a bike is there. theres a board with the ten commandments of OCB on the wall that says stuff like 'if you're broke, tell us before you start fixing your bike' 'tip well, tips are like kittens.'

i got more and more excited as i talked to the girl. (whose name turned out to be emily. she was wearing a rosie the rivetter shirt) eventually i said 'how can i get a job here please?' she said i should volunteer first, get the swing of things yada yada. picked thursdays so im going there tomorrow and will return every thursday. yeehaw. im stoked because this means i have something to do tomorrow. purpose. yay.

friday i go to victoria because i want to.

I looked up all her symptons and they are classic for hyperthyroidism, which means her dosage is too high. I called the doctor and waited, and waited, and waited for a call back. Nothing. I decided to cut her pill in half. I simply could not give her her full dosage. I won't take her off it, but I can't keep this up.

She was due for her blood test anyway, so I took her in, screaming and crying the entire way. It was fucking brutal. I had tears in my eyes half the time. Her levels are slightly elevated, but not as much as I was expecting considering how amped up she seems. The loss of hair is really bothering me. In just a week, her hair is noticeably thinner. I mean, I can see her scalp. I'm afraid to brush her hair. I'm afraid when she goes to sleep, even more will rub off on her pillow. I'm one step away from looking up ways to save her hair. She, of course, hasn't noticed. And no one else would probably notice. But, when I look at her, all I can see are the white spots on her hands from the vit and now her thinning hair, and I'm freaking out.

Still, no call back from her specialist. I called the pediatrician. She got me the results at least but she can't do much about the dosage. Another specialist was supposed to call. The nurse even said she was really good about getting back to parents. No call. Well, tomorrow will be day three of half her dosage as prescribed by me.

I swear, it's too damn scarey to have kids. Who needs this kind of worry?

she has it on the eyelids and elbos , knees for 5 years. inhte last year it is getting mild relapse.

she is currently on NBUVB

my questions are:

 1-is it contraindicated to use laser here? can patients koebenrise on laser? even if they dont burn?

2- patient already on phototherapy do we have to adjust for the laser parameters (am using gentilase)

3-if the patent was to develope vitligo on the legs ten years from know, and she did laser epilation now, will that jepperdise her chances for repigmentation since the commonest form of repigmnetation in vitiligo is follicular?

thanks

šodien biju aizgājis pie burvīgās ādas ārstes.
Iečekot, kas notiek ar dzimumzīmēm.
Un noskaidrot kādēļ es lēnā garā pārvēršos par tīģeri/zebru/plankumainu radību.
Izrādās, ka ādas stresa dēļ [pārsvarā saules iespaidā] brīvie radikāļi apgriež pigmenta šūnām kājiņas, ar kurām tās nostiprinās pie ādas slāņa un tās tiek izmestas no ķermeņa. Tādējādi daži ādas laukumi lēnā garā zaudē spēju iekrāsoties saules ietekmē un tā vienmēr ir balta.
Šo procesu tad arī sauc par vitiligo. Kā vienmēr – nav lipīgs, nav mantojams, nav paredzams. Maziem bērniem bieži palīdz dažādas ziedes, pieaugušiem cilvēkiem - reti.

Morāle – tev nebūs ļaut saules spēkam sevi skart arī apmākušās dienās un ieziesties ar faktors spf 50 kremu [UV A+B]. Mirstīgajiem esot gana ar 30.

Num trabalho recentemente publicado no PNAS, o grupo de Steven Rosenberg vem comprovar o que se temia acontecer em situacoes de forte inducao imunologica contra os antigénios de diferenciação melanocítica eg, Melan-A/MART-1, tirosinase, gp100. Num sistema experimental de vacinação contra o melanoma incluindo imunodeplecao e elevadas doses de interleuquina 2, os autores do trabalho observaram não somente fenómenos de vitiligo, mas também sinais de destruição dos melanócitos do olho. O trabalho faz mesmo a capa da edição.

Os fenómenos de vitiligo, foram quase sempre considerados factos positivos após terapia dirigida contra antigénios da linhagem melanocitária, pois indicam que a resposta imune encontra-se activa e é capaz de destruir os melanocitos da pele. O vitiligo observado nestes ensaios era pequeno e pouco extenso, e sobretudo resultado de uma resposta imunologica em pequena escala.

Os ensaios realizados pelo grupo de Steven Rosenberg no passado, vieram demonstrar que a respostas imunologicas anti-melanoma poderiam ser potenciadas a um ponto em que 50% dos doentes com melanoma quando tratados atingiam respontas clinicas objectivas, com redução da massas tumorais ou completo desaparecimento dos tumores em certos casos. O facto, é que o sistema terapeutico desenvolvido puxa ao máximo o sistema imunológico dos doentes e é dificilmente gerivel e aconcelhavel para muitos dos doentes. Os pacientes são primeiro imunosuprimidos drásticamente para remover o sistema imunológico residente e posteriormente os doentes são transferidos adoptivamente com elevadas quantidades linfócitos infiltrantes dos seus tumores (TIL) expandidos em grande quantidade e doses massivas de interleuquina 2. Devo dizer que o tratamento é drástico, colocando o paciente num estado de temporaria imunodepressão e depois com um estado febril pouco gerável. Os resultados obtidos são no entanto bem evidentes, mas a que preço?

O trabalho actual vem portanto corroborar o que se temia, e que pelos vistos foi documentado num outro trabalho. Em situações de ataque massivo contra os antigénios de diferenciação melanocitária, não somente existirão sinais de vitiligo, como também a destruição dos melanócitos presentes nos olhos e correspondente diminuição da capacidade visual e mesmo cegueira, oque de um aspecto deontológico é difícil de aceitar.

Sasha, when I got really sick this year with RA me and my bf stopped having sex and then it just miraculously came back. We didn’t do anything different we just started wanting it again. Perhaps, the fact that you’re worried about it and want it so much make it harder for it to happen. Perhaps just relax and realize that it’s okay to have lulls and it will come back on it’s own. She Also wrote: I have 3 autoimmunes: Vitiligo (got when I was three) and hypothyroid and rheumatoid arthritis this year. I am convinced they’re all related. But maybe that’s good. Maybe when they figure out how to fix one they’ll fix them all! -Libby

Libby makes such a good point here that I think i would be cheating myself to not try it. Good point. Perhaps what my couples therapist would advise!! This one from another reader:

Me too. I so very much appreciate the caregiving, but if I could afford it would rather pay someone else to be driver, cook, housekeeper, caretaker. We came into each others’ lives for the joy, the fun, the sex, the adventure. I’m absolutely certain that if the situation were reversed I would make maintaining the intimacy a top priority, it’s so (CLICK TO Read more about caregiver relationships and also multiple diagnosis of autoimmune diseases)...HERE -->life-enhancing and important to the psyche and soul. This arms-length relationship is so lonely. I miss sex terribly, hate the distance between us. It makes me feel like less than a woman, less than human, only invalid, and with nothing to offer. Don’t know how to get him to see ME any more or again. Sighhhh . . . . Anyway, you’re not alone. I’ll let you know if I find a solution / strategy / answer, and please do the same for me. -Laura

She says it so well. This is a brilliant way of describing my exact experience. She also mentioned:

I too have RA + pancreatitis + hypothyroid (autoimmune) . . . and asthma, fibromyalgia, migraines, depression (go figure!). It’s tough to accept each additional diagnosis, but the more people I talk with the more I find have multiple issues.

The longer I have been doing my site here the more people I've spoken with online that have multiple diagnosis. It is very odd/interesting. They all seem to be auto-immune diseases of some kind. I've read differing facts about pancreatitis...some say it is an auto-immune issue and others say it is not. I find it too bizarre that women are coming up with the same identical combo of diseases. Has anyone looked further into this? Obviously, RA & Hypothyroid have been linked together for quite some time. But what in the world do RA and pancreatitis have to do with one another? Of course depression would certainly go with all of this since this stuff is so depressing.

My 4-year-old daughter, K, has vitiligo. Most people know it as the "Michael Jackson" disease. It's an autoimmune disease in which you lose pigment in your skin. It's associated with many other diseases including thyroid disease. K is very small for her age - like in the second percentile (short stature is a symptom of hypothyroidism). My husband and I are not large people. I'm barely 5' 3" and my husband is 5' 10" so we know our kids won't be tall. Even though her dermatologist said it's uncommon for children to have thyroid issues with vitiligo, we asked to have her tested. As it turned out she has hypothyroidism. We'll see a specialist, but we already know she'll be on hormone replacement therapy for the rest of her life.

I can't help but feel guilty that she has to deal with this forever. Why her? It seems unfair that I've never had any medical issues, and here is my baby with problems already. I know the treatment is simple. She'll take a pill, it'll be like a vitamin, and she'll be fine. But still. For the rest of her life she's going to have this. What next?

I felt slightly blue today maybe because the garage is brimming with things I’ve been told that I personally should take to the dump, just because I’m the one who put them out there. That I should be the one to get my hands dirty handling a bunch of broken coffee makers and blow-driers, never mind the bath mats that have had bleach spilled on them and so look like victims of vitiligo, the bleach coming into it because every few months I go through a stage where I feel like changing the colors of things and so dye the towels, my clothes, even the lampshades if I don’t like the way they look on a particular day, and then sometimes well most of the time I end up making the colors perhaps a little TOO vivid and have to try toning them down with a quart of Clorox. All right so now I feel bad about mentioning “vitiligo” because just think how hard it must be to have that pigment problem and be spotted all over like Michael Jackson. Wait a sec, now I’m Googling Michael who I have been worrying over ever since his nose fell off and would you look at that! There are scads of videos on You Tube where you can watch his face change over the years, in, like, time-lapse photography practically.

‘Course now I feel even sadder thinking how people love to criticize poor skinny MJ who certainly did NOT molest any children and I should know. Sometimes I think I’m the only one who really knows him now that Diana’s gone, the only one who’s been there for it all, the Liz Taylor friendship, the Barbara Walters interview, the Oprah one, his own descriptions of how would take him to the mirror as a little fella and say “Look! Look how ugly you are” and all.

But hold the phone maybe I’m not the only one! Because here’s this chat room I’ve just entered where people have been really dicing him up fine and a young woman weighs in and says to this other moron “How OLD are you anyway? All you ‘teens’ need to grow up so you don't become lame donkey-ass adults. Grow up, teenager!” Well now I believe that’s done it! I feel completely cheerful again. “Lame donkey-ass:” now there’s a phrase that’s worth remembering!

]]> http://happywonderer.wordpress.com/?p=1086 Thu, 15 May 2008 21:01:05 +0000 Ellen http://happywonderer.wordpress.com/?p=1086

I love this photo of my sweet little niece with her Aunty ellen b. Look at her great eyebrows. After we left Dallas she cut two bottom teeth within the week. She's just 3-1/2 months old. Before we left for Dallas I had my first ever trip to the dermatologist because my face was discoloring. I thought I was getting brown spots. At my visit the dermatologist discovered that I'm not getting brown spots but instead I'm losing the pigment in my skin, a condition called Vitiligo. It's the same condition that Michael Jackson has. I'm not wearing any cover-up in the photo above so you can see my loss of pigment especially next to my dear niece's perfect baby skin. So from now on if I post any photos of myself out walking you'll see me with my Dallas souvenir on...

Here I am last Saturday at Emma Wood State Beach with my new UPF50+ hat with a 3" rim. The areas of my skin that are losing pigment are very sensitive to the sun so I need to add extra protection. A sunblock with helioplex broad spectrum uva-uvb and avobenzone 3% are highly recommended for protection. I'm using a Neutrogena product that has both of these ingredients in it. The only downside to this condition for me besides my vanity, is the fact that I don't wear hats well and then the added condition of bad dented hair from the hat after my walks!

Between my back issues and my face issues I was happy to have memorized ~ 2 Corinthians 4:16-18 ~"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Have a wonderful day y'all and keep on walking. I've had a good week of walking and I'll be posting my average steps every Monday from now on. 

Little did I know just how quickly it would rear its ugly head. A few years ago I first noticed a weird little scar on my back. I have no recollection of how I got it. It just suddenly was there. The only spot on my very red, sunburned back. I never thought much of it until I went to the dermatologist a few weeks ago.

Names have an interesting way of taking over. Until the doctor spoke the word, I didn't think of the spot as anything more than an entity named Bob or Herman or Frankie with a made up a story about how we met up during our time in the Peace Corp in Bolivia. No such luck for me.

It turns out that my weird little scar is actually vitiligo. This just means that I'm losing skin pigment in parts of my body. You can go ahead and breathe now if you thought I was about to share something life-threatening. This isn't fatal, but it is crushing to my fragile sense of self, especially when I noticed some white spots on my arm. And hand. And the bottom of my illiopsoas.

So please forgive me for my lack of presence online for the last week. My mind has been completely occupied with the pounding sounds of , "VITILIGO! VITILIGO! VITILIGO!" This is accompanied by obsessive images of patchwork skin, questions about whether or not I can ever show my face in the public again, and a worry or two thousand that my husband won't think I'm just as beautiful as I am now.

In between these crazy moments, I've journaled. I've prayed. I've screamed to God. I've cried until my chest ached. I've completely switched to a gluten-free diet and put myself on a daily regimine consisting of a butt-load of vitamins and mini yoga sessions. Vitiligo appears to be an autoimmune disease, so I'm pulling out everything in my arsenal to build my immune system. There is always the chance these "reverse freckles" will re-pigment.

Just around the bend.

My heart aches.

My faith is still unshaken.

___________________________________________________________

To whom it may concern:

I believe that I need to include a letter to explain the care duties I perform for my husband James to accompany my claim for Carer Allowance/Payment, as I feel that the form does not allow me to show the amount of care I provide.

James has an very troublesome and difficult to manage condition called Autoimmune Polyendocrinopathy Candidiasis Ectodermal Dysplasyia (otherwise known as APECED or APS1)- an extremely rare endocrine disorder. There are many life-threatening components to James'scondition. He suffers from Addison’s disease, insulin dependent diabetes mellitus, hypoparathyroidism, pernicious anaemia, chronic candidiasis, vitiligo and alopecia. Each one of these conditions creates havoc for the others, therefore making them all harder to manage.

James has chronically unstable Type 1 diabetes. Despite being on an insulin pump, James has an Hba1C (a glucose marker performed every three months on a person with Diabetes) of 10.3mmol/L, indicating that his blood sugar levels are, on average, around 15mmol/L, this is well over the recommendation of an hba1C of less than 7mmol/L. On an average day, James’s blood sugar levels can vary from 1.8mmol/L (at this level James is barely conscious at best) to a readings over 33.9 (the highest reading that the meter can detect). To try and control James’s blood sugar levels, we check his levels by finger-pricking up to 10 times a day. As James has trouble with his memory; a symptom that is synonymous with late stage Type 1 Diabetes, but also some of James's other conditions, I need to remind James on a frequent basis to "check his level".

If James has had a good day, I also wake up at least twice overnight to check his level whilst he is sleeping. If James has had a bad day, I stay up most of the night and check his level every half an hour or hour. I am always prepared to pour sugar laden drinks down his throat if his levels are descending rapidly. James is unable to recognise that his level is dropping. He can sometimes feel that his level is low at around 2.2mmol/L, however by this level he does not have the correct level of cognition to treat the hypo appropriately. With James, episodes of hypoglycaemia are often sudden and come without warning. We are never far away from a glucagon injection (an injectable serum that has reversible effects on low blood sugar). An injection of this hormone into the thigh will kick start the liver to release built-up glucose stores into the bloodstream. I can’t recall the amount of times that I have had to inject my husband as I talk him through fighting unconsciousness, praying that he doesn't fall into the stage of diabetic coma, or require resuscitation.

Addison’s disease makes it much harder for James to manage his diabetes. James’s level will go up after he has his medication, and will drop almost uncontrollably if he does not have enough hydrocortisone in his system. By itself, management of Addison’s disease is difficult, as it makes it hard for James to fight any infection he may contract. Illness, physical shock and dehydration can bring on an Addisonian crisis (hypovolaemic shock). If James starts to experience any symptoms of an Addisonian crisis, vomits or experiences severe diarrhoea he then requires an emergency injection of Solu-cortef, a hydrocortisone solution. James is unable to give this injection to himself and often when he is going into hypovolaemic shock he is unable to make his way to the phone to call an ambulance. If left untreated an Addisonian crisis can result in death due to extreme hypoglycaemia, dehydration, shock, low blood pressure, decreased cardiac output, arrhythmia’s, and/or salt loss with potassium retention. An Addisonian crisis can be averted by an intramuscular injection of Solu-cortef, which James needs me to administer, otherwise the situation will deteriorate rapidly into a immediately life-threatening state.

A typical day for James and I starts at around 8am when the alarm goes off for the third time overnight. After turning off the alarm I check James’s level using the glucometer which we keep next to the bed. After performing this check James needs repeated prompts to get up and have his tablets and breakfast. If James does not have his tablets at regular intervals he experiences low blood sugar levels and can also go into life threatening shock. During the day James requires prompting to check his level. Often he will head off to check his level, forget what he was doing, and thus need to be prompted again. As James forgets to use his insulin pump to deliver insulin when he eats, I also provide reminders for him to do this. Depending on what time we go to sleep, I will set the alarm for 12am and 3am (we have a dual alarm clock) so that I can wake up and check James’s level. When I wake up to check James’s level I reset the alarms so that they sound at 5am and 8am.

On a bad day James will sleep all day. When this happens I have to check his level every 30 mins to an hour, as his levels are very hard to control when he is sick. I also have to ensure he wakes to eat when he needs to, that he has his tablets when required, as well as checking his temperature and his blood pressure. It is not uncommon for me to spend the entire night awake on these occasions. However, good days can easily turn into bad days when James’s level unexpectedly soars or drops. On both occasions James will be extremely tired in the aftermath of the ravages upon his body from hypoglycaemia and hyperglycaemia. Whether the emergency has been a severe hypoglycaemic or hyperglycaemic episode, the result will always be blinding, torturing headaches, extreme light sensitivity and nausea.

The following is an example of a day which started out good and rapidly turned bad. The sinister nature of these conditions is that we never know exactly if, when, where or how serious an attack could surface. James and I got up early to take my dog to the vet. At around 11.30am I lay down to have a nap as I was tired from checking James’s level overnight. I was woken up just before 1pm by James telling me that he felt sick. He had been outside in the garden working and had experienced a severe hypo. He does not remember much of it, only that he was sitting outside and thinking about his vegetable garden. The next thing he was aware of is that he woke up face down in the dirt. He remembers getting up and coming inside to look for his car keys, then his symptoms seemed to be alleviated, despite the fact that he was standing in the shower with purely cold water running over him. He warmed himself, and was lucid enough to recall what he could remember of the life-threatening events that he endured alone, fortunately he came to wake me and let me know his situation. His level at this stage was 10.2 mmol/L. As we discovered later he had treated the hypo with the first thing he found when he opened the fridge, which was a litre of custard. He lay down to tell me what he remembered about his hypo. Suddenly, he felt overwhelmingly nauseous, and he had to rush to empty the contents of his stomach. It was at this stage where my presence was necessary, as I had to rapidly prepare a hydrocortisone injection; if he doesn’t receive an injection of this immediately after he vomits, he will experience severe hypotension and/or life-threatening hypovolaemic shock. I grabbed James’s Addison’s emergency kit, prepared and administered the injection. James then fell asleep, exhausted by the ravages of the hypo and vomiting. I then spent the rest of the afternoon monitoring James’s blood sugar levels each and every thirty minutes to ensure it did not drop too low as, since James had vomited, he had no food in his system to keep his level within a normal range, and he was not able to eat without the risk of vomiting again before he went to sleep.

James has been having increasing trouble with his eyesight. He has blurred vision and an aversion to bright lights. We have an appointment with an ophthalmologist on the 18^th of February, 2008, so we should know why he is experiencing these problems. Because he is unable to tolerate bright lights, I now have to do all the driving whenever we go out, including driving to an increasing number of doctor and specialist appointments.

James takes at least 19 tablets each day (133 tablets a week or 6916 a year). This number can increase if James needs to take more hydrocortisone due to illness or stress. Each week I need to sort out James’s tablets into pill containers so that he can try to keep track of which tablets he has had. Often it is only when James’s level drops low for no reason that we discover that James had forgotten his tablets, despite my many prompts. James also needs to have a cytamin injection (B12) every three weeks. James has trouble with allergies and one of his tablets each day is an antihistamine which mainly keeps this under control. When these allergies become prominent, James gets burning, painful eyes which he cannot open.

James is on an insulin pump to help control his diabetes. An insulin pump is a device which continually delivers insulin under the skin via a soft flexible canula and tubing which needs to be changed every three days. The tubing and canulas used for James’s insulin pump can be very temperamental, causing infections at the site, or bending and getting blocked. I have performed site changes on James in many different settings. As James usually uses a site that is towards his back on his side, he is unable to do this site change himself.

We are also working closely with James’s new endocrinologist, our GP and the staff at the diabetes centre, to get James’s insulin pump settings corrected to minimise unpredictable low and high levels. James’s other medication is also under review. It is a constant juggling act to manage the different medications, as the amounts needed vary almost on a daily basis. For example, if James gets an infection, (even a tiny mouth ulcer) he needs to take more hydrocortisone tablets, which increase his sugar level, therefore, it is essential that he is fed more insulin. A low blood sugar result naturally puts excess stress on James’s body, and he often needs extra hydrocortisone to manage this as well. This frustrating affect on sugar levels is something we are endeavouring to conquer so that we can program James’s insulin pump to account for these changes.

I recently had no choice but to stop working due to the fact that James needs me to provide care for him 24 hours a day. While I was at work there was no one else available to care for him, and obviously I am unable to be in two places at the same time. I enjoy working and I wish to return to work in the future if possible. As you can imagine, by quitting work our household income has been severely reduced increasing our financial burdens. The carers allowance would help to alleviate these concerns while we work to get James to a more independent state of health, which is a constant goal of ours.

I hope this letter has shown that I provide care for James for at least the equivalent of a working day as required for receipt of the carers payment. Although James is an adult, the nature of his conditions means that it is up to me to manage his health on a daily, even hourly, basis. It is almost impossible to express the difficulty in managing James’s conditions and the amount of time and effort I put into keeping James alive and as healthy as possible, but I hope that I have managed to express it adequately. I hope that by outlining James's contradicting and life-long situations, and the examples that I have provided of a near coma or fatality has helped you understand the enormous amount of pressure that we both face every single day. I know you will now be able to appreciate the juggling act that we undertake managing James’s conditions, and the amount of time and effort we put into ensuring that James remains as healthy as possible. The infuriating and enraging situations arise when a miniscule amount of "relaxing for a day" or relaxing the usual level of control in regards to his medical conditions by either of us could realistically result in James’s condition spiralling out of control and into a life threatening state. James’s GP has stated that he is willing to write a letter addressing any queries you may have about James’s conditions or my role as a carer.

This is for all my grandmommas and VITILIGO LUVAS.

• CHICKEN SOUP for the MJ/LMP Lover's Soul

Those two are just plain old horny bastards... Thankfully, Lisa, Myken & Harmony are okay. I was scared for them when she made that tumble in the bedroom, not healthy for a pregnant woman... Before you bring Grace's dumb ass back into the fic, can I please jump in and kill her before she messes up Michael & Lisa's beautiful connection, I could make it nice and painful for her...

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YES, PLEASE DO!!! I may edit that into the story LMAO. I can't wait myself until Myken and Harmony the Presley-Jackson twins are born. *sigh*

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Hahahahaha! I really enjoyed that update Bebe! I'm happy the twins are ok. vulnerable porcelain skin

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It is so quite vulnerable and porcelain tho isn't it.

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It is. And I love him, no matter what shade.

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Mmm, me too. This reminds me of when ThrustingCrotch &myself lusted over the vitiligo a while back in the OMG thread.

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• Lee Thomas Thread

I wish I could watch but I don't have TV.
Michael is beautiful even with this disease,
I hope he knows that.

• Okay Gals!!!

he has the SEXIEST neck I have ever seen. His jawline, the Adams Apple, its just so thick and manly

his HUGE masculine hands

his ASSSSSSSSSSSSSSS and crotchhhhhhhhhhh! that ASSS is to fuccking DIE for

his BELLY/WAISTLINE is where MY fetish is. his backside is SO sexy I cant even describe what it does to me. I want to hold my hands around his waist and run my hands up that HOT fuucking chest of his. GOD.

And those nipples. GOD.

His legs are SOOOOO perfect. I mean...PERFECT legs. he is sex ON legs!

His BREATH TAKING EYES.

his fuccking LIPS. especially when he BITES them omg. or when he sticks them out like during the Bad Era.

CUTE SEXY SMILE.

that HAIR my GOD the hair. Hair I want to run my fingers through and pull and oh God!

his broad masculine shoulders that make a suit look like a fuucking sex invitation.

his BIG sexy feet.

his CUTE adorable nose.

those SEXY indian cheekbones.

his creamy sexy skin

those HOT SEXY MANLY sideburns!

his one of a kind EARS

he has a sexy forehead that I cant help but lust over and want to lick!

his beautiful sexy eyelashes

the sexy facial hair when he has it

his CHIN its so sexy! especially when he rubs it with his hand or touches it with his finger.

his cute little outtie bellybutton

his vitiligo spots set me on FIRE

his fingernails

GOD, everything about that man is perfect perfect perfect to me. He is physical perfection in my eyes. Everything I want in a man and more. Everything about him is sexy and attractive to me --- even parts of him that other people dont like such as his nose or whatever. his nose is one of my favorite parts.

UGHHH GOD! just one night with that man and my body would be relieved of a LOT of pent up sexual frustration

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I love the vitiligo spots. Something about them is so sexy to me I can't contain myself. Theres one other fan here who thinks the same thing...I think it might be [BabyBubbles] but I'm not sure. But I know the spots on his SEXY chest, the ones on his left wrist, and the ones on his leg make me so horny. Only Michael Jackson can make Vitiligo spots make a girl horny as HELL.

• The KOP Poster's Picture Thread

WOW. great pics.
and im a vitiligo lover too T.C.

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Thankies girlies!!
Youre very pretty Bebe! There should be a Vitiligo Lovers Fanclub huh!?

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As bad as it sounds, yes there should be! And I love your dress too, it's purdy.

how beautiful.

EWWWWWWWWWWWWWWWWWWWW NO BLACK PEOPLE!!!!!!!!!!!!!!!!!!!!!!!11111111