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Pemphigus Vulgaris- 11 things to remember

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 What this journey has taught me? Starting with simple affirmations and yearning for them to become true is where I stand today! 'That's okay! Better days are ahead of you, it's going to be fine.' They seem simpler, but the darkest times taught me that it isn't simple to hold on to them when you see your life falling apart. Picking yourself up and having the will to redesign it from scratch—everything depends on these words. So, repeat them until you make it through! YOU GOT THIS. 11 things to remember  1.   You can’t control everything and that’s absolutely okay! 2.   You will learn along the journey; every person is different thus every day is a learning , that’s okay! 3.  You will learn to love and appreciate your life. 4.   You will find ways to manage symptoms even at cost of every flare up, that’s okay! 5.   The journey is long and tiring. It’s a marathon ; with its finish line still out of sight, but t hat’s okay! 6.    Embrace your ...

TOP 10 THINGS TO KNOW ABOUT PEMPHIGUS VULGARIS

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TOP 10 THINGS TO KNOW ABOUT PEMPHIGUS VULGARIS  "ATTITUDE TOWARDS THE DISORDER MATTERS!" It is hard, frustrating, and overwhelming to come across this term. People who are reading this might be among the warriors who got diagnosed recently, or the caregivers who are supporting their loved ones in suffering. Let this page make it easier for your initial research and understanding of terminologies. Keep in mind that every day is a learning experience! As days pass by, you will develop a tolerance to identify the triggers and symptoms. Treatment, flare-ups, and the duration of medication all differ from person to person. This page is for knowledge purposes only. World Rare Disease Day -  February 28 Definition: A rare autoimmune skin condition that cause blisters and sores on the skin or mucous membranes. 1.What foods should you avoid ? Spicy foods  hard foods  alcohol  processed sugar. food high in sodium  citric fruits (oranges, grapefruit, lemons, limes,...

Poem- The callous soul

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Poem - THE CALLOUS SOUL The callous soul - RGK She wore down till her last shade ,             when you complained of the stain . Through the shattered mirror,          she gazing over her wilted weather's pain . Streams from her eyes trace down her parched lips ;   they fumed as if she tasted the ocean in her dips. Time swept her sore sole     as her heart blistered upon their desertion . And you complained of her, for the callous! The callous soul, for once,            envied death over existence. -RGK KAVINAYAA (aka) KAVITHRA Briefing the poem : She stood along their hardships when they mocked over her pain. She almost lost her identity with the reality and viewed the world inside her lifeless just like the winter weather. The faded features of hers are overwhelmed by the sensation of the salt in her tears pressing her cracked lips and understanding the fact that time doesn...

About the blog- pemphigus vulgaris

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 About the blog - [tackle PV with rgk] Tackle (PEMPHIGUS VULGARIS) PV with rgk (R.G . KAVINAYAA (aka Kavithra). My personal journey with Pemphigus vulgaris; An unsettling war : STILL UNDER TREATMENT ! “ The greatest liberation for one is to write what one goes through in life when the whole world feels crowded that it makes one to suffocate with loneliness.” And the very great liberation to a struggling one is to find that they are not alone in this journey and to get to read the other side of it. It may not be the solution, but rather a voice (hope).   The initiation for this platform is to liberate myself from the dense, and to be the voice of many unheard. This blog is dedicated to spreading awareness about a rare autoimmune disorder, Pemphigus vulgaris (PV), which my doctor, Dr. Murlidhar Rajagopalan, aptly described as "the worst nightmare of disorders." I, RG Kavithra (also known as Kavinayaa ), was diagnosed with pemphigus vulgaris (PV) on July 3, 2023, at the beginn...

Poem- THE ART OF FORGETTING

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  The art of forgetting  And sometimes I lose track of time , deliberately . Deliberately, when the dock of emotions felt unfamiliar. Tapestry to the melancholy self , I lose track of time , 'cause the echoes felt trivial , trivial, the shades of tears , or the shadows of dauntless . Yet, the silence of the sea prevailed. Now, I lose track of time. Deliberately , pause , deliberately, to admire the timelapse . Timelapse, that hit the turmoil . For once, the fall from the deck released me , released me to fly, fly away from the wintering grounds . Regret towards the past, surpassed , and breathing felt real.  - RGK  KAVINAYAA (aka) KAVITHRA Briefing the poem: Lately I’ve been thinking and it caught my attention that there is a difference between want to and happened to, and a poem has always stood or took a great deal of role in displaying the emotions metaphorically, and the very unsettled great minds have provoked the thoughts of one through such notions. And to the...

Pemphigus vulgaris on skin pt 6

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  The last question . Entry date: 1st October 2024 It’s been a while since the last post, they spoke about my experience during the hospitalisation which I quoted as my toughest times or that’s what I thought was! Little did I know what was on its way, was way more than the times before ,“ THE REALITY! ” I was discharged during the last week of September 2023, i was more than happy to be back home. The thoughts were loud and obvious, “this is it, I did it, no more hospital or need of hospitalisation”. I believed, as I went through it, now I know everything about it. [ spoiler alert!  My knowledge about it was just pea sized ] My search to know about this disorder only increased everyday against my parents wish, they wanted me out of it, but my part of healing were the answers to these!. I went through books, wanted to know people, wanted to know their stories but to my disappointment I found one to none. I felt the longing thus it made me to build this platform, for the silen...

Nothing is beyond our mind pt-5

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                                     NOTHING IS BEYOND OUR MIND Room no: 2323 I was shifted to room no.2323 with the bed, as I passed the nursing station, I saw them overwhelmed and their eyes glowed in curiosity. Entered the room and I helped myself out of the bed and headed to lavatory, when I stepped out a new nurse was already appointed for me.  As I was trying to reach the bed, she saw my bare back which was eroded completely, she reached out to me and asked for my permission to click a picture of my skin. I positioned myself under a bright light for a clear view.  [ I never felt the curiosity in them as a fault, placing me in their position I would’ve been more than excited to know about the new case. I appreciated her approach and interest in knowing about it.] The same night I slept like a baby. It’s been months since I had such a good sleep. Morning around 6 am they woke ...