And the Battle Rages On – side-effects from the prolonged use of medications - by Sabrena

I have to say, throughout the one year of under-going the medication (the Prednisolone and Azathioprine) had really changed my outlook towards life. I literally lost my self-confidence and every time I looked into the mirror, I do not even recognize the person who was staring back at me. I hated myself. In fact, I still do. I no longer posses the eloquence of a language teacher since I pretty much have lost my ‘groove’. I mean who would want to listen to a fat and grumpy teacher any way? I stammer a lot and I could not even bring myself to share any opinions with anyone.

I was bloated to the point of no return and the physical condition was worrying. Don’t say I have not tried to keep the water retention and puffiness at bay. I did Yoga and exercised with dumb bells every morning; unfortunately, the weight just kept on coming. Sometimes I wished I could have super powers. Nope, I do not want super strength or the ability to fly or transform into a guinea pig. I just wanted the ability to transfer fat to the villains (any part of their bodies for that matter). Can you imagine a foxy villain in a leather suit having a bum cheek bigger than the other, fleeing away from me because he/she couldn’t bear to be weirdly fat? Just how could the villain shed that extra baggage away? (snicker J) Just something for personal trainers to ponder upon.

Anyway, the dermatologist I was seeing was concerned with my overall health especially when I highlighted that small red spots have started to appear on my skin. These spots if I am not mistaken are warning signs of consuming too much Azathioprine. Bruises (which appeared out of nowhere) have also started to show its ugly face. This is one of the early signs indicating my liver has been affected by the medication. He then sent me to see an endocrinologist. The endocrinologist poked my foot (bloated as ever) with a wooden stick and asked me to guess whether he was using the sharp pointy end or the blunt one. I got it wrong a number of times. In a rather grave tone, he said my nerves were already damaged. Then he did a blood test and checked my blood pressure only to confirm that I have steroid-induced diabetes and steroid –induced hyper-tension. So, as expected, I was given more medications to control the blood sugar levels (glucophage) and blood pressure (cozaar). I was also asked to see a nutritionist to devise a proper diet to curb the conditions.

Picture of stretch marks all over my body due to water retention and sudden weight gain

Some of my friends were very concerned about my failing state of health and advised me to seek alternative solutions. The question is, how could I find one, when most of them promise to boost a person’s immune system one way or another? As much as I wanted to try, having an over-reactive immune system does not permit me to do so. It would only make matters worse. So, despite the condition I was in, I kept on taking my meds as prescribed, hating myself more and more each day. There were days where I felt like not wanting to go to work. My body was also stiff due to the steroid-induced rheumatoid arthritis. It would take around half an hour to muster the strength to get up to take a bath. Due to this, I wished I could just hide away in a cave, far away from those menacing eyes of civilization.

I got angry a lot during this period. When I go to work, I would bury myself with the tasks given to me and I snapped a lot. I have no idea how Mimi managed to withstand my self-pity and frustration derived temper tantrums. (Thanks Mim!) I know that she doesn’t like to be treated like that and that is a lesson learned for me. I forget that we sometimes would hurt the ones closest to us because we tend to take them for granted. (Love ya lots, Mim).

Anyway, one day I had a late lunch, and a very late dinner. I did not think much about it though; so the next morning, I took my meds as always and I started experiencing vertigo. I went to work despite the dizziness, thinking I could get to the panel clinic later. At the office, I was too bogged down with the students and work that Mimi had to force me to go to the doctor. I explained to the doc on my current medication and medical history. She checked my blood pressure and said that it is perfectly normal, so I returned to the office and resumed work. That night, I started vomiting and had to go to the toilet, so many times, I lost count!

Soon I became dehydrated and tired from the lack of sleep. I went to the clinic near to home first thing in the morning. Somehow rather, despite my appearance and weakness, the blood pressure is still fine.  I honestly find that to be rather odd. So, I continued taking the meds for diabetes and hypertension in addition to the steroids and immunosuppressant, Azathioprine. By late afternoon, I literally started seeing stars. You know those neon lights (from the lamp posts or car headlights) we see each night? The stars pretty much looked like that; and I saw them everywhere I looked and every time I opened my eyes. The only difference was, I saw them as groups of different hues of yellow lights. The intensity of the colour varies depending on the object/person in front of me. I had to hold onto the walls and furniture to walk and as soon as I reach the bed, I would just collapse. 

 This is how I looked like all puffy and unhealthy. Picture taken a week before I collapsed.

Mimi took a leave that day, and she began to worry. She insisted I go to the clinic again. This time, it was my regular GP. Just one look at me and she informed Mimi that I need to be taken to the Emergency Room as I was gravely ill. I was rushed to one of the nearest private hospitals by Mimi and upon reaching the Emergency Room door, a doctor, two nurses and a wheel chair was waiting for me. My vision was a blur and the next thing I know, I was hoisted to a bed, a drip line was made and I heard Mimi answering a few questions. At around 5pm, after 3 hours in the Emergency Room, I was sent to the High Dependency Unit (HDU). It was then when I was informed that my blood pressure was below 50 upon my arrival and the docs at the Emergency Room had to ensure that the pressure reached 50 before I could be sent to the HDU. Apparently, given my situation, taking a hypertension controlling drug was an extremely bad idea as it makes the blood pressure drop even further, leaving me in a life-threatening condition.

I think this is long enough for this week. I promise to continue on the recovery and what I have learned next week.

XOXO

Ms. Invictus

A New Light-by Mimi

Psoriasis? Flaky, red, itchy and inflamed skin? Joint pains? Anyway that’s all a new term for me (back then I mean). I found out that psoriasis is basically a skin disease when rapid production of skin cells that is triggered by abnormal lymphocytes from the blood. Hmm…that is the purpose of the medication I was prescribed to. The doctor told me that they should help me “clean up my blood”. I felt as if I am a vampire or something but I guess that was his layman term in explaining the situation to me so that I won’t panic.

I also found out that psoriasis commonly affects your knees, ankles, elbow and that explained why mine is so flaky and hideous all the time. But before knowing this I thought I was not cleaning myself hard enough. I used to brush my ankles and knees long and hard until my skin bled and became raw. That was 20 years ago, I never do that anymore because I know it is not because of my hygiene. But I can vouch for it, after taking Transfer factor from 4Life Research that part of the area is still hideous but not as bad as before (besides it only has been 3 months since I started taking TF).

I learned that there are several different types of psoriasis including psoriasis vulgaris (normal type), pustular psoriasis (something like small blisters), guttate psoriasis (small, drop like spots) and inverse psoriasis (in the folds like of the underarms, breast, navel, and buttocks which normally makes your skin so smooth and red or inflamed).

Don’t ask me which one I have because honestly I don’t know. All I can tell you is that at first my psoriasis affected my whole body and face with inflamed wounds, skin breaks and flakes. After the treatment it all seems to subside except for my scalp, knees, ankles and elbow and I have been living with it since. Then a few years back I had a huge outbreak at my thigh, navel, butt and under my breasts. The doctor gave me pills and topical cream to soothe the skin. The outbreak seems to have subsided but there is still a huge area on my thigh and butt; where my skin cells are still affected by psoriasis. I am telling you it is hard to lecture a group of students when your skin is experiencing that uncomfortable burning sensation.

The scars were very noticeable; I have tried everything and all sorts of creams to make the scars fade away. I learned to live with the scars and have been trying hard to prevent any further outbreaks. These all changed when I started taking 4Life Transfer Factor about 3 months back, I also applied their lotion called 4Life Enummi and guess what?!! My thighs and butt are now cleared without any scars in sight and I feel great because I no longer live with the fear of scraping my scars unnecessarily whenever I put on clothes. Isn’t it grand??

Looking at the different perspective with all the things that had happened to me, I would be fooling you if I say that I am peachy about everything. My mood swing was like a roller coaster especially when it comes to my perspective towards life (doc says the effect of the steroids could explain the mood swings but I like to think it is me instead of the tablet).  As I grow older, I think God would have never tested me on all of this if I couldn’t endure it. I guess I am lucky to have experienced this and I won’t take things for granted since I now will have to compromise a large part of my life with psoriasis. So I guess no matter what just be thankful for everything you have and do and take time to do the small stuff just to remind ourselves that we are human.

Even though we need reminders that we are just human sometimes its fun to be ANYTHING BUT human..that's me with Syidah the Pirate..


Later,
Mimi

Welcome to My Life (Part 2)- by Mimi

So now I am 125kg, suffering joint pains, with some flares every now then which leave scars. I still couldn’t stand heat and my gastric are becoming worse, everywhere you go people tend to look at you disgustingly because you are obese, make jokes at your dreams because to them the reason why I am so fat is because I am lazy, dirty and stupid; in a nutshell what a wonderful place the world would have been if it weren’t for me. I never went shopping for clothes cause of my size, who am I kidding?! I could never be as beautiful as everyone else. There are times I can’t even look at myself in the mirror. I guess I have been keeping the hurt, hatred feelings for so long it is eating me inside.

Irony part is I am now a lecturer, whereby giving advice, nurture young minds is what I do. I am terrified when the first time I entered into a classroom thinking to myself, “Mimi what the hell were you thinking!! People will look at you funny again!”. Thank God all went well, I loved teaching and I taught them about life (rather than Tax all the time). All my students have tasks that they have to perform, do good deed at least once a day and never let anybody bring you down. I figured nobody should endure what I have gone through (sometimes still do!). The world is as bad as it is, the least thing I can do is trying to make it better with the power of knowledge. Here’s the irony part, people who don’t know me thinks that I am a happy go lucky person with loads of love and cares in the world; actually deep down I am very scared and still trying to avoid meeting strangers at all cost! I am not as out-going as people think I am. The lesser people I meet, the lesser they will talk about me. I mean how do you response when you are in an elevator to work when few idiots gave you their brilliant comments “ I am so disgusted by you please do not stand so close to me! Eat that’s all you do!!” other comments would be “ Oh dear I am so afraid just looking at you, your are so big and fat, if you are my child I would die  of embarrassment right now”. God, these people actually have no conscience at all and they are breeding throughout the world! I can’t tell them my life story saying that I am like this cause I am not well can I? I wish I could fall into a hole or become invisible.

Things will my self esteem went so bad until one day I reached a cross road, being hospitalized for acute bronchitis (great more drug to make me round!!). I started saying that I have to make full use of my life (at least what’s left of it anyway), with the help of my friends and family slowly started to gain my composure and strength in life.

I took dancing lessons, Latin American and was quite good at it. The instructor said anyone can dance despite of their size. Now I have been dancing for almost three years, taking dancing exams (eat that you mean and shallow people!) and PASSED. Though I have tried exercising and eating healthily, my body weight is yet to show any obvious changes reduce that much. Then somebody told me that the steroid intakes in the past had somehow influenced this phenomenon. 

 Me, passed my bronzed level Latin with highly commendable..

One fine day, a dear friend of mine introduced me to this kind lady who suggested me to take Transfer Factor by 4Life Reasearch. I said to her thanks but I think I will pass. Then she talked about the scientific thingy no drugs, all natural. Then I told her autoimmune has no cure and she insisted that I should give it a try.  I did some research on the net about 4LifeTransfer Factor and came across a lot of positive comments yet, I was still a little skeptical. I mean everybody can write comments. Up until I told my friends on 4Life Transfer Factor; suddenly all stories started to pour on how 4Life Transfer Factor help them to improve the quality of their lives. They advice me to try, I have known them for years and trusted their judgments but, I hesitated at first because,  I always attract freaky stuff like bees to honey. Then I started to think what if?, what else can I lose? You never know. No matter how old I get I have always been a sucker for being optimistic and I do, still believe in miracles.

So, I started to take 4Life Transfer Factor, for about 2 month’s time, I noticed that my joint pains have started to heal, the migraines and the gastric attacks are gone, and my menstrual cycle was getting better. The best part was the scars which previously would not heal, are gone! I don’t rely on drugs anymore (if not they are always in my purse, just in case). I know we are not in a movie where every wishes come true just like that. Things will take time to heal after all it has experienced in the past 19 years. 

I love to share this with anyone who wants to try; it seems that many people have already known about 4LifeTransfer Factor and have already started using it for themselves. But there are still more out there who don’t even know that there are always other alternatives. We are no Saints, but God will always listen to your needs and request; however God will not give to you just like that, you have to strive without giving up on hope and faith. God will help you through the means you least expected.

This is my first time writing about me, why am I writing this? Well nothing better to do maybe; or maybe just want to let you know that when things are as hopeless as they seem to be, if your heart is true, everything’s will turn out fine. As for me, I know how autoimmune can change a person’s life though there were times when I felt frustrated and wanted to gave up, there is a little voice in me saying “What if”.

Later,

Mimi

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

My story by SYAHIDAH

My name is Syahidah. I am 34 years old and am currently staying in Ampang, Selangor. I’ve been diagnosed with two major medical life crisis, brain tumor and fibroid.

The brain tumour is called Acoustic Neuroma, or Schwanoma, or CP angle brain tumor. This tumour exists in hearing nerves, balancing nerves and facial nerves. It is a benign tumor and a primary brain tumor. The tumor will affect the hearing nerves and the balancing nerves of the patients. The symptoms include headaches, hearing loss and clumsy gait or vertigo.

The first time of the MRI scan report, (on July 2010 at HUKM), showed the tumor located at the right corner of my brain was already huge at 4.2 cm. It had already affected my hearing and balance and most of the time, I had headaches. My brain had already moved to the left as the tumour occupied the right brain and it had become too big. The tumor is very adjacent to the cerebellum. I will have to use a wheelchair for the rest of my life or be bedridden if the tumour becomes too large. It will affect the eating and the breathing as well since the brain controls everything and it can become life threatening if it is left without treatment.

The fibroid (quite a common health condition), were scanned last year too at HUKM since March 2011. I’ve been to a clinic and they have forwarded my case to a hospital. The scan showed that there were two fibroids, on both sides (left and right), each at about 3.5cm and 7.2 cm respectively.

It was then I was introduced by a friend to try  4LifeTransfer Factor. I consulted my doctor at the clinic before consuming 4Life Transfer Factor. The doctor is also familiar with Transfer Factor and told me to consume it. Since then, starting August 2011, I have consumed Transfer Factor. I hoped that the bleeding which started since February 2011 and my daily headaches could be contained.

For the first day, following an advice from a friend, I consumed 15 tablets of Transfer Factor. I went to sleep as usual that night. When I woke up in the morning, it’s already 8 am. I did not hear the alarm clock that I put just beside me. The alarm was supposed to wake me up at 5.45 am, but I did not hear it. After two (2) days consuming Transfer Factor, the bleeding stopped and the headache was bearable. If not, I will have to sit in a washroom for at least 15 minutes.

During my second brain tumor surgery in USA, I was in ICU for 2 days and was discharged from the hospital only 5 days after the surgery. I could walk in the ICU, ate as usual, and climbed the stairs in the hospital. It was a fast recovery compared to the first surgery at HUKM last October 2010, where I needed three (3) weeks to one month to be able to walk as usual without using a wheelchair. I did not realise that I have consumed one bottle of Transfer Factor during my recovery at USA. I believe, there were many factors for my fast recovery, and one of it is 4 Life Transfer Factor. It helps me to recover faster!

Thank you to my fellow friends, who had introduced to me the 4Life Transfer Factor. I did a research about Transfer Factor, and it was superb! It was amazing because 4Life Transfer Factor helps improve my quality of life.

Most of us are healthy enough already. Most people think that there is no need to have supplements. Are we starting thinking of consuming supplements when the health conditions are low only?

Hugs,
Syidah

The beginning of the real battle with Pemphigus Vulgaris by Sabrena

Among the first things I did upon learning my health condition was to read up on as many literatures I could find on Pemphigus Vulgaris. I learned that this autoimmune disorder is the most serious form of the bullous disease affecting the oral mucosa. Luckily, its fatality rate is very low and it is non-transferable to another. The disorder is frequently misdiagnosed as gingivitis, mucous membrane pemphigoid and erosive linchen planus and though it can remain localized in the mouth, it could also extend to the skin, genital and eosophagal mucosa area – I am thankful that mine is still in the mouth.

Pemphigus Vulgaris has the potential to become fatal to its patients due to the overwhelming infection of the sores. Physically, it looks like a flat whitish blister in the mouth, covering the gums and lips. Mine even covered the under the tongue area (the floor of the mouth) and the insides of my cheek. Healing from these blisters take months. The question is, how do these autoantibodies attack in the pemphigus vulgaris patients? From what I gathered, these autoantibodies attack the ‘desmoglein’, a skin cell which acts like a glue, ensuring that each skin cell is attached to each other. Without the desmoglein, the skin cells become separated and the epidermis becomes ‘unglued’. This in return led to the acantholysis phenomenon which means that blisters were formed because the skin has been eroded and become fragile. In short, it is like using a watered-down glue to stick large numbers of paper. Nothing sticks or stays together and with a soft brush of the hand, the paper will start flying everywhere. In the case of the Pemphigus Vulgaris patients, the area affected will bleed.

To treat the condition I was in, I was put under a high dosage of steroids (60mg of prednisolone per day) to control the inflammation and Azathioprine, an immunosuppressive drug, commonly used to prevent organ rejection after an organ transplant and the treatment of a wide range of autoimmune disorders. Azathioprine suppresses the immune system at the bone marrow, which means it would have a dangerously long list of side-effects of long usage. Though the steroids were reduced by 10 to 20mg around every two months, I had a relapse when I was on the last 10mg. This brings me back to the dosage I first started in.

The relapse had affected my physical appearance to a great length. I started having continuous hungry pangs which made me eat and eat and eat. I tried to limit my food intake to vegetables and fruits yet the weight kept piling up and soon I was obese. My puffed-up appearance caused great concern. Though I tried to exercise every day, I was finding it harder and harder to breathe and move. I lost my balance when I did my yoga and I struggled to climb the stairs due to the knee and joint pains. Then, I noticed that my skin changed. Not only do I lack the lustre and glow; small veins started to appear; as if my skin is being stretched and they are painful too. I highlighted this to the dermatologist and he informed me that these are stretch marks. Frankly, I have heard of stretch marks, but to have them all over my thighs and upper arms is plain unacceptable.

Before Pemphigus, I am the one on the left. Mimi is the one on the right, in a dark brown blouse.

This is me after the first treatment. Notice the cheek got chubbier

In addition to this, I had hair in places I never thought possible for a female to have. I tried to laugh it off though. I told my friends that I was turning into a werewolf since hair is growing all over my face and neck. When I inquired about the hair to the doctor, he said that is a rather uncommon reaction to the medications (how quaint...I just have to be different all the way). With a hump growing on my back (another sign of prolonged use of steroids), I seriously felt unattractive. The only one who might take a second glance at me would probably be Quasimodo. Don’t think I should elaborate how these physical changes were affecting my emotional state of mind. I mean, we are born vain, it is one thing to be obese in a ridiculously short period of time, but to be an obese person with hair growing all over the face and a hump to boot...that is too much. This explains why I was grumpy all the time. I hated the stares I got every time I eat and the look my students or anyone for that matter were giving me (both sympathetic and disgusted stares). Sometimes, I felt like yelling at them, asking them to stop looking at me as if I am  freak! But then again, I was a freak. Here is a picture of me (before and after I was diagnosed in 2010).

This is me, under high dosage of steroids (again) during the relapse. My face felt sooo full and chubby every time I smile.    

xoxo,

Ms. Invictus

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