This is my life’s story about living with the dreaded skin allergy – Chronic Urticaria also popularly known as Hives (or Angioedema). And believe me it’s been a living HELL. It’s been 18 years that I’m struggling with the malady and ever since it’s been going on and on and on. When it actually started I did have a normal life like any other person but as the years went by it has aggravated to such an extent that for the past 5 years I’m confined to the walls of my house. The ghastly day of October 2, 2003 when my life got stalled owing to the severe urticaria attacks has been etched on my memory forever.

No cure
Allopathic as usual dosen’t help much and after running hundred of tests, consulting thousand doctors and trying out alternative treatments like homeopathy, ayurveda and naturopathy, I’m kinda back to suare one. It’s unfortunate that in today’s millennium wherein people suffering from Aids and Cancer can be cured and are able to have normal life, people like me suffering from not so life threatening disease like Urticaria/Hives cannot be cured.

Being fiercely independent and extrovert I love to socialize and it’s difficult for me to digest the fact that I don’t have a normal and social life in terms of career or otherwise. There are times when I still cannot fathom the magnitude of how my life’s been turned topsy-turvy by the not so life threatening disease. Nevertheless, I refuse to give in and live my life popping overdoses of antihistamines which seldom help my predicament. And, I refuse to accept that I would never be able to have healthy normal life.

“If you want something bad enough, never give up.” ~ Randy Pausch

Severe urticaria attacks
Strict control on diet does help a lot. But this disease has tested my patient not only literally but figuratively. Imagine walking around with excruciatingly painful swollen hands and feet for hours together making even simple things like holding a pen or punching words on your laptop an arduous task.

It’s unbelievable when during one of the severe allergy attacks how your entire body especially your face swells terribly and becomes unrecognizable. The swellings are very much visible for a couple of days, not to forget how embarrassing and awkward you feel when people keep interrogating about them. And then there were those moments when anytime, I got angry, nervous, excited, and anxious I used to break into hives. Luckily for me the intensity of the eruptions has gone down considerably.

No concern or empathy
My urticaria is induced upon prespiration, certain foods, warm conditions and at times also due to indigestion which makes me stay indoors most of the times. Some of our so-called apne (relatives from mother’s side) and other acquaintances rudely commented that my situation is a ‘figment of my imagination.’ How I truly, terribly wished they had been in my shoes and gone through the similar dreadfully painful – stabbing, piercing, itching, pulsating feeling when your body begins to swell. And how unbearably excruciatingly painful it is to feel like your entire body is on flames. Not to forget the panicky moments when I used to get the Angioedema attacks – where the tongue and the back of the throat swells severely, swallowing even a drop of water becomes extremely painful. For people like these words like insensitive, inconsiderate are understatements that’s simply being ‘inhuman.’

The epiphany was that I now know who my genuine well wishers and friends are. Then there were those, who in spite of being complete strangers opened their hearts and offered immense support and understanding for what was happening to me and my body. When life throws one of its little curves, its extraordinary how you feel connected to people you never met and the people whom you thought are a part of your life suddenly become perfect strangers with nothing to offer.

In the bright sunshine of life everything looks good and every person a friend. Only when darkness descends we begin to realize what is what and who is who, bringing us closer to the truth.

“The people who make a difference are not the ones with credentials, but the ones with the concern.”

You are not going to die……
I remember vividly a certain incident which occurred 8 years ago while getting my medical tests done with a skin specialist doctor at a reputed south Mumbai hospital (Churchgate). The doctor being inexperienced in diagnosing cases like mine said he wanted to see and check how exactly urticaria/hives look like when they flare. He certainly wanted to experiment (as if I was a rare species for his research) and asked me to take a stroll and come back after few minutes. I told him it would be excruciatingly painful even though I was on an antihistamine, but he insisted. It was 1 or 2 pm in the afternoon and blazing. What happened after that was not only unimaginable but also awfully unbearable. In spite of being on heavy doses of antihistamines, I had a severe urticaria attack; thankfully I didn’t get the swellings. I literally lapsed in and out of consciousness as my entire body was covered with Hives. When the doctor finally sent for me, I was in tears as the pain was agonizingly unbearable. Without thinking and with no flicker of emotions on his face for what I was going through the doctor sternly said “You are not going to die.” Although true, at that extremely vulnerable predicament I was zapped by the words coming out of his mouth. What was he implying that I should be grateful to be ‘alive’ for enduring agonizing piercing pain? At that moment it felt like I was ‘dying’ hundred times over. I mean, come on!!!……..let’s be practical, after all he couldn’t be in my skin to feel the agonizing pain of being jabbed by millions of knives all over. Period.

Without paying any heed to what the inexperienced doctor had to further add to his stern comment, I walked out of his consulting room only to rest on a couch for the symptoms to subside. There was not a single pore on my body which was not covered in red patches. I felt like ‘Red Riding Hood’ only for me it was literally skin deep. More than disappointed there was a feeling of despondency in my heart at the doctor’s attitude in treating his patients. It dawned to me later that I shouldn’t have given in to an inexperienced doctor’s weird experimentation.

“That which does not kill, makes us strong.”

On a second thought, isn’t a doctor supposed to be a ‘Patch Adams!!’ Not that the inexperienced so called skin specialist was able to heal me, but during the course of trying out alternate treatments over the years, I was fortunate enough to meet doctors who gave hope, understanding, immense support, confidence and patient hearing with a compassionate heart to their patients even in a ‘no hope’ situation. Unfortunately, the skin specialist was not one of them. This incident makes one aware of how things could go drastically wrong if the doctor is not an expert in diagnosing patient’s ailment correctly.

“Compassion is sometimes the fatal capacity for feeling what it is like to live inside somebody else’s skin. It is the knowledge that there can never really be any peace and joy for me until there is peace and joy finally for you too.” ~ Frederick Buechner

My struggle is far from over
Even though it’s been over 2 years I have not had severe Angioedema attack, thanks to my strict diet regime. Yet, for me every single day is a struggle and I am hoping that every moment of that struggle becomes a victory………if not today then maybe someday because I firmly believe impossible is nothing.

It’s been precisely six months since I last stepped out of my house. Depending upon the intensity of urticaria eruptions I can somehow manage to take a stroll for not more than 7-9 minutes. As a result, I’m strictly cautious about my food habits, which keep my urticaria symptoms under control. I awfully Miss the freedom I had in my life. When I look back at the good-ol, sweet memories I have of my life, they seem to me like ‘Once upon a time.’

My driving force
Sigh!!……if it wasn’t for the support and love of my family and few close friends I wouldn’t have made it this far. It’s perfectly justified that the disease severely affects one physically but the aftermath of emotional upheavalment is simply horrendous and grotesque. It’s like a ‘parasite’ that eats one up emotionally too. I have grown out of the initial furor and bouts of crying, being cranky, edgy, depressed, worried, frustrated and feeling helpless to do anything about my life coming to a complete standstill with no hope for the future. Not that its easy now, but I’m holding my own and moving on with renewed spirit, zest and hope that I will be healed. Honestly, I will be damned if I’m ready to give up now.

“Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are.” ~ Leighton

Lessons learnt
Uticaria has taught me many lessons about perseverance, endurance, family, friendship and positive attitude. But, most importantly it has taught me not to take anything-all that I have-for granted again. As I now realize, how simple pleasures in life like taking a leisurely walk, enjoying your favorite flick at a movie theatre, dining, outings, sharing the vagaries of your lives and the unabashed banter over a steaming cup of cappuccino with close friends are beyond my reach for the moment. It breaks my heart to do away with shopping. Being a compulsive shopaholic it has always had an therapeutic effect on me.

Faith and Hope
I’m confident sooner or later I will be healed. And with all the Faith and Hope in my heart I’m moving on because I believe in God much more than I believe in myself.

I’m aware of the fact that I’m not the only one suffering from the turmoils of Chronic Uticaria. And I’m sure in the days to come this article will certainly help many more people like me around the world to voice their feelings…….

“Tough times never last, but tough people do!!” ~ Robert H. Schuller

Keep the Faith……
Shilpa

Saturday, October 24, 2009

Yesterday, out of the blue I received a call from one of my school friend Pallavi Dandekar inviting me for a get together with a couple of friends from school days. Thanks to the social networking site. I was surprised to the hilt. But at the same time extremely happy to hear from someone whom I once knew well during my good-ol school days. That was almost two decades ago. Suddenly, I recollected the beautiful fair looking girl with grey green eyes.  She was a typical Kobra (Koknastha Brahmin) girl Ghare-Gore types. We used to call her Pallu and Mani Maoo (pet Cat with white fur and green eyes). The namkaran was done by none other than the most mischievous brat in my class, Kedar Vadhavkar  famously known as Vadya. Guess what he had nick named me?? Spidy. Courtesy: My crazy curly mop.

Change is constant
When our conversation began I realized nothing about Pallavi had changed. She was the same ol person. With the marathi accent still intact despite of being in US for many years after marriage. Infact, I was the one sounding a tad Firangi with my Minglish (Marathi-English) accent. As far as my memory goes I remember Pallavi having no serious hang-ups about herself either about her good looks or otherwise. She was one of the most compassionate, down to earth, warm person I had ever known during my school days who always carried mom made besan laddoos in her tiffin. I remember how she never faltered sharing her entire tiffin generously with others. At the end of the conversation I realised I sounded more confident over the telephone. Everything about me has changed. Few months ago during an online chat Pallavi had remarked “What happened to you? You are looking so good.” I replied “The ugly duckling got transformed into a beautiful swan over the years.” The introvert, unconfident, fiercely shy girl with unconventional looks and crazy curly mop has definitely come a long way. And though going through a rough patch right now on account my health, I did feel good about myself.

Memories die hard…..
There was yet another girl in our class with a strong fan following. Famous for her dented chin and attractive features. She was a character straight out of The Bold & The Beautiful. The Dimple Kapadia look alike Sheetal Deval was named (sexy) Devil by none other than Vadya. Envious to the hoard of  good looking guys she had as her arm candy, I carried a deep secret desire to be like her. I was in complete awe of her. Though I was known for my good singing, I desperately wanted to score on the turf especially where the fan following was concerned. But for a shy back bencher with unconventional looks and hair that looked more like a wig straight out of Ramayan, that seemed quite an unreachable dream.

And, so they say things change………..Eight years down the line my dream did become a reality when I landed my first job. A fan following, which to my utter surprise has been steady even now. It’s only now I realise how unnerving and a BIG pain in the neck it could be. Watch out what you wish for guys……

I still have a vivid memory of a loving and sweet natured teacher. Her mantra to discipline students was not through harsh words or stern punishment. It was just her simple, loving, caring words that worked like Magic. I believe qualities like these have to be innate. It’s that sweetness in one’s heart which naturally seeps out and touches other hearts. It cannot be stopped. I remember how eagerly I used to wait for her class to begin. She was our very sweetest Banerjee Ma’m.

Ground reality
I desperately wanted to be there and jam up with my school friends, share a few laughs and probably their ups and downs too. The sad part was that, much to my dismay I had to make a deliberate excuse to avoid meeting them. All the while knowing how much I love to socialise and interact with people. It is truly heart breaking to do away with what my heart frantically wanted. But the truth was more bitter and brutal. True, people have probelms but their life still moves on. Like mine, none’s life is stuck………… literally. I had nothing to tell them about my life. Yep, things would have been different if health was on my side. But……..

I went into a gloomy mode when my conversation with Pallavi ended. My Mum knew how I was feeling and without wasting a single moment she petted me with compassionate words saying “Things will work out for you. You’ll get another chance. Don’t worry.” For the time being that was enough to pacify me.

Confessions of an honest mind
Once during an online chat with Kedar he confided that his 10/12 years of marriage was falling apart. Very candidly and with no qualms he had divulged details about his personal life and declared he was heading for an inevitable divorce. I was completely zapped with the ease with which he could pour his heart out to someone he met after almost two decades. For a moment I wished I could do the same. But I was just glad with the fact that at least I have shared my life with some of my closest friends who have remained visible in my life for longer than I remember.

It’s quite awkward and inhibiting to share your personal life with someone who has just popped on your life’s radar after almost an eternity. Not that it’s impossible. But to build a confidant relationship you have to toil hard for it. And that’s years and years of hard work. Right now, with my allergy breathing down my neck every moment, I’m not sure I want to switch onto the mode and work on acquaintances’ bumped on the social networking sites.