Welcome to My Life (Part 1)- by Mimi

As a young teenager I loved to swim, play volleyball, badminton, and bowling and of course dance. Even though I was pretty bad in sports such as relays etc, I am quite good in the ones I mentioned above. I have to put all that to a halt when funny things started to happen to me when I was about 14. It started with simple allergies which got worse rapidly! I can’t eat anything much because it will make me puffy and blotchy; worse still, I can’t sweat even a little. When I sweat, my skin will start to break before it bleeds. The painful wound would then get itchy and bigger. First, it was just at certain parts of my hands (small patches) then as time goes by it got worse until it infected my neck, face, body, legs...come to think of it, nearly every single part of my body! In addition to this, for most of the nights, my skin became puffy and red. I had to get a jab from the docs most of the nights, the puffiness did not only affected my skin, it also puffed up throat and lungs thus making it difficult to breathe.  Went to the doctors (a whole loads of doctors) from GPs to specialists; some of them even said that I might be anemic, some says its leukemia, others say eczema. In short, I have gone through the lot of tests and the results were all negative. Some specialist even said that I am allergic to plants.

Here  I am with loads of plants and allergic to it..

I didn’t know what is wrong with me but all I know is my life had changed drastically, out of 5 days I would normally go to school for 3 days due to my condition. I could not stand heat at all. Not to mention the kids in high school were pretty mean to me most of the time. I have been ignored as if I have some kind of plague or something. Well even some of my family members would look at me disapprovingly. I tried not to go out too much because people looked at me as though I was some kind of zombie coming back from the dead. The disgusted looks on people’s faces, the way they jeered, and the mean jokes at my expense were not helping. Parents are very supportive of me but I never told them what bothered me; I preferred to hide it all inside and when these things happened I would just normally smile or just ignore them. Up until today, I think I am pretty good in hiding my feelings to others.

When people looked and stared..I guess this is what they see.. not a bad look I might say ..

As when I turn 17, things were still pretty much the same. My face became scared with wounds that could never heal and my skin was still flaky. At that age I would do anything to make the pain go away. One of the girl in school said that I should put tooth paste to treat the wound; feeling desperate I did; but it got much worse. Whenever I looked around, I saw my friends were busy living teenagers’ lives. This made me ponder about mine. I didn’t have that luxury; I was busy preventing myself from bleeding as much so it would not hurt. Being tormented and being made the butt of all jokes by everyone else is the least thing on my mind back then. Noticing the lack of positive improvement on my skin condition, my parents decided to take me to a skin specialist who gave me the meds and of course miraculously everything started to heal. I was so happy after all these years. Little did I know that there were other problems in line waiting for me.

The doctor did not explain to me on my condition, only said that I have psoriasis. So he gave me the meds to take every 2 days. Doctors back then did not explain much to you especially when you are just a teenager. My skin began to heal but the scars were still there. Thank God that the scars on my face are completely healed. But then I noticed something else, I began to gain weight like no body’s business. I went from 65kg to basically 120kg. I started to eat less and still it did not work! Now I know how Mr. Marshmallow puff would feel. Tried dieting, exercising even taking some diet pills and yet none of them worked.

Now a new type of battle rages on with new types of torments. That was 16 years ago. All those years, my psoriasis was not cured, it is still with me. It was much later did I know that I have an autoimmune disorder which means the immune system is attacking the healthy cells. (Great, even my immune system doesn’t know who are its enemies and simply decided to attack itself, sheesh! What luck!). One thing I know about autoimmune is that stress will only cause it to flare up. I have a few my shares on that one..and am still relying on drugs. There was a time my psoriasis flared up very badly my lower thighs are affected. I cannot even walk because of the pain and the blood. There was nothing much that I could do other than taking steroids to heal it.

The problem I have now is not just the psoriasis itself, but includes the few other side effects of taking steroids over the past few years. I have MEGA migraines all the time, joint pains, my menstrual cycle was a mess and the pain was excruciating. I normally have to take a powerful pain killer to reduce the pain. Some people have very funny sense of humor (especially when you are in pain). The solution to bad menstrual pain is to get married quickly! Then everything will be alright. If everything can be solved by marriage I guess the world will be a better place by now. No offence, I have nothing against marriage but for once, I would really appreciate give me a remedy that really works....to be continued

Later,

Mimi

A One in a Million Journey – My on-going Battle against Pemphigus Vulgaris by Sabrena

For years I have never bothered whenever I heard of the term ‘autoimmune’ until recently I was diagnosed with one. In layman’s term, autoimmune is a disorder where the body produces autoantibodies due to its inability to recognize which of the body parts (cells/tissues/organs) is its own, causing inflammation and damage to the area or organ concerned. SLE, Lupus, Rheumatoid Arthritis and Diabetes Mellitus type 1 are just some of the examples of autoimmune disorders. This article describes my journey, as an individual diagnosed with an autoimmune disorder so rare, that it happens to 1-5 individuals in every millions of a population, Pemphigus Vulgaris of the Oral Mucosa.

It started in January 2010. Being a health nut, I would get so excited whenever I go to the pharmacy (go figure J). The aisles of health supplements would entice me to purchase as many bottles as possible. I would read the numerous health magazines just to update myself and refresh my memory on various health issues. I led quite an active lifestyle through yoga, jogging and dance. The types of supplements I would always be on the lookout for are the ones that promise to boost my immune system. But then again, life is so full of irony; little did I know that when I popped that tablet of the ‘complete’ and ‘the only’ health supplement I will ever need in my mouth; I triggered a reaction in my body causing it to produce autoantibodies (please note that I could find no literature to confirm this statement as no one really knows how the disorder is triggered. In my case, my disorder developed after I took the health supplement. This is a possibility as it was the only new addition to my diet back then.)

It started with a simple sore throat, which refuses to go away for two weeks. I went to see my GP for treatment and was given some lozenges and antibiotics. Seeing no improvements after a few days, I went to another GP for a second opinion, and was given the same thing. A week later, I started having white patches inside my mouth, spreading rapidly like there is no tomorrow. I requested my case to be referred to a specialist and was sent to a private hospital. Unfortunately, the ENT refuses to take my case seriously and waved it off as a stress-induced ulcer and gave me lozenges and antibiotics; though I have already informed him that none of them worked! At the same time, it was getting harder and harder for me to consume solid food. I was reduced to eating bread, dipped in clear soup and brushing my teeth would lead to excruciating pain. I took the ENT’s meds for a day when my best friend, Mimi insisted that I seek a second opinion.

Off I went to another private hospital, hoping to find an ENT who would examine my condition carefully. The ENT read the referral letter and peered into my mouth to see the seriousness of the condition. He said it was a serious case of a yeast infection, named Candida. Confidently, he gave me a dose of yellow liquid, which surprise..surprise..I happen to be one of the few people in the world to be allergic to it. The ENT did the cotton swab test on me twice to identify the culprit for the white patches and found it to be negative for fungus and bacteria. Though he was puzzled, he assured me that he would help me solve the puzzle. Through him, however, I learned that the infection reacted positively towards prednisolone, a type of Corticosteroid, used to control inflammation. This development gave him the idea to refer me to a dermatologist.

The dermatologist I was introduced to wanted me to undergo a biopsy. Where a sample of cells from my inner mouth was cut to be delivered fresh and analysed by the lab. Apparently, that is one of the best ways to confirm an autoimmune disorder. A few days passed, and I have lost five kilograms due to the lack of sustenance. At this stage, I could no longer brush my teeth. I rinsed my mouth with a mouth wash available in any stores and I could only drink plain water and milk. Even these were difficult to swallow. I reported the pain to the dermatologist and he gave me Diflam, a type of mouth wash which numbs the pain temporarily. He said the one I was using is too strong for my fragile gums and palate. A simple gentle scrape using a tissue would lead to bleeding gums and using the wrong mouth wash, or eating crispy food would only make matters worse. Finally, one morning, I received a phone call from my doctor, who informed me that I was diagnosed with Pemphigus Vulgaris of the Oral Mucosa, a rare autoimmune disorder which is more prone to occur  among women between 40 – 60 years old (by the way, I am in my thirties), and those of Ashkenazi Jewish descents or of Mediterranean origin.

Unfortunately, the news is only the beginning of my long battle with the autoimmune disorder. As I learned the hard way that there is no cure for it and I have to live the rest of my life being dependent on steroids and azathioprine. To find out more about this disorder from the horse’s mouth (that would be me), do wait for my updates from time to time.

XOXO

Ms. Invictus