Pemphigus vulgaris on skin pt4(chp4)

 

                                 Chapter 4

                          “They said, it supposed to be fun, turning 21”

Stage 2: anger!

“I cried over the white sheet, when I was the art covered in shades”
-rgk

At home:
Every time I thought how worst could it possibly get turned way worse day by day. I hated every bit of myself. I completely hated me the way I looked and smelled. I was too abusive and cruel to myself.
I never understood until then “how much of self hate can a person hold, on oneself!!?”
I pushed my mom every time she tried to get close to me, suggested that my dad stay away from my room, ‘cause I was able to see that it was suffocating for him to stay in same room. 
I used to wake up in the middle of the night screaming and crying, and continued maximum nights staring at the ceiling replaying the same playlist over and over again. 
The only time I got out of the bed was to help myself to the lavatory. My mouth lesions got so worse that I wasn’t able to eat solid foods, my parents tried their best to turn them to porridge and feed me. My mom continued to motivate me throughout to sit and walk for a bit, but I was so reluctant to get out of the bed, I didn’t feel sleepy, I wasn’t sleeping , but I never wanted to get out. I wanted to escape the reality by sleeping. Mother pushed me to switch positions from lying on my back to lying on my stomach frequently hoping it would dry and heal, they did dry, but never healed. Lying on my stomach extended the lesion’s anteriorly, face pressed to the pillow paved way to lesions around the eyes, and extensive lesion on the neck. 
The more I cried, the more worse the eyes got. I asked my parents to cover the mirrors in my room with paper and clothes. Television was on throughout the time, never knew what it was playing but the noise gave comfort to my mind. Kids in the neighbourhood came to visit me upon my arrival, intending to find the old me the old Kavithra. To their disappointment I never left the bed, every morning they heard me scream and cry out of pain after the bath. In a couple of days the smell worsened and I wasn’t able to bear the temperature of the water. I begged my mother not to force me to shower, but thanks to god she always convinced me to bath at-least in saline water, baring every harsh words that came out of my mouth. “How could a person love someone this much?”

Days passed by very quickly, but nights felt like decades. On the tenth day, ambulance came to pick me up, I was shifted to the adjustable chair model stretcher, when they tried to repositioning the stretcher to bed, my skin got dried up by then that it felt like pulling my skin off, felt like there wasn’t any flexibility in my muscle and it was stretched to its maximum already. The crust formation on the sides of the groins made it even more difficult for me to walk.
The next-next days in the hospitals weren’t pleasant. Every time when someone crossed my room they closed their nose, or walked in suggesting to keep the door closed or add on a ventilator fan so that the fetid air won’t bother others. They ran a no.of blood tests and wound swab test.
I no longer took shower, it was just saline dressing. It was hurtful to see people when they quickly exited the room, wearing double mask, double gloves every time someone entered. The results came back positive for every possible infection (six bacterial infections - secondary infection) the diagnosis of sepsis . Immediately as per the protocol the room was isolated, infections room alert board was kept outside my room. The whole corridor was alarmed.
I felt sleepy all the time, but they suggested not to sleep as it might disrupt my night sleep, but the nights were no different whether I slept at day or not. I cried and it continued to worsen my eyes covering with crust and lesions which made it difficult to open or to see anyone. Fever spiked to 104 and never reduced. 

Stage 3: bargaining 

I screamed, shouted until I got exhausted, at last with no shame I accepted I needed help, and I wasn’t doing okay mentally. Without sleep I was turning a mad person and pleaded to Madhu ma’am to help me- “ I’m not okay ma’am, I can’t sleep, I can’t eat, the smell and pain are horrible that I want to puke every time, I’m not okay, I want to go home, I don’t want to be here but I want help, I feel like being tortured and I feel like I’m torturing my parents” because as much as I had sleepless nights my mother stayed awake with me, my dad entered everyday to an empty house, with a heavy heart and mind in constant quarrel. How much a person could bear? “How much of “how much more?” Who will speak the trauma they (care-giver [parents, partners, every single well wishes]) go through?”
Madhu ma’am suggested that I needed a psychiatrist’s help and recommended Dr. Shalini who understood the unfair change I was pushed to and helped with my sleep and my mental state.

Difference between a psychiatrist vs psychologist 
Psychiatrist —branch of medicine focused on diagnosing and treating. “Medical treatment of the soul”
Psychologist — study of mind, emotions, behaviour rely on talk or behavioural therapy. “Branch of philosophy”

September 2  “They said, it supposed to be fun, turning 21”
In the morning it looked same as every other day waking up unwillingly from the bed, to find myself soaked in the oozing from my wounds, with a very strong odour. Had my breakfast force fed by my mother.

**[ As I type these today sitting on a couch, wearing my usual clothes excited about the wonderful lunch prepared by mom, I’m giggling at the state I was. How desperate it changed me to love food and enjoy my life at its simplest . ]**

Madhu ma’am came for the rounds that morning and I was full of happiness and excitement I don’t know for what but I was. She explained the plan for the day and said there’s going to be two bottles of IVIG infusion and asked me to stay hydrated. As normal she asked me how am I feeling and I said I’m excited as I’m turning 21 today. I could see it in her eyes that things paused for a second when I told her it was my birthday, but she regained her smile and wished me. 
Honestly I was super excited about the whole day, I was very tired, I was not able to sit , I was not able to eat, people were barely able to hear my voice, I wasn’t ready to use the toilet cause that means I need to walk. But I was very chatty with my mom and dad. 
I was teasing my dad and was arguing with him for not wishing me. It was clear to see in my dad’s eyes the sadness, but never on earth they wanted to give up. I was able to hear them murmur as my dad said to mom “There isn’t a bigger hospital with bigger facilities than this, if they can’t! I don’t know where else to take her, the one and only support we have from then till now is the supreme God himself, pray to them, how ever you can, I just need my daughter back.” 
To the people reading this, diseases drains a persons health, drains a family emotionally, nothing goes by without discussing the elephant in the room, it drains out one FINANCIALLY. It makes you to question everything you believed in. But remember never lose HOPE, never lose FAITH, never GIVE UP!!!
**[I accept it, I had bad days, bad months and bad years, but they weren’t my limit.]**

By afternoon IVIG infusion started as I was chatting with mom in trembling voice, she had tears in her eyes, pain in her smile she advised me to sleep for a bit. I wasn’t sure for how long I was dozed off, when I open my eyes I found myself in blood pool, the infusion back-flowed and the needle wasn’t placed in anymore, I tried to call out to my mother, but I was not conscious enough to be loud, felt like dream. Mom was already rushing to the nurse station and yelled for help and within instance Muralidhar sir was informed about the scene. He was furious when he entered the room and found out that the medicine was back flowed and I was lying on the bed bleeding through the line. Immediately the sheets were changed and pillows were replaced. But one could sense the mixture of emotion that room carried. He interrogated the nurse on duty and bombarded her with questions that she almost cried .
After a while he spoke to me in a calm voice enquiring how was I feeling!? I was shivering and trembling the whole time that constructing a sentence was impossible. Dr suggested mother to buy a heater for the room as my body lost its ability to regulate temperature on its own. With a serious look he asked me, “So, how old are you today!” My face lighted up, smiled till my cheeks hurt and bring every drip of energy together and said out loud “21 sir!”, he smiled and wished “HAPPY BIRTHDAY!!!”. “How much desperate a person wants to be treated normal for a day, at-least for a moment.”

“My mother stood in one corner lifeless, 
eyes exhausted, nose tinted red and   
cheeks marking pattern of dried tears” 
joining her hands together, placing all her trust to one human to Dr. Muralidhar Rajagopalan, he immediately rushed to the nursing station and he made a few calls and prepared to shift me to another room and urged the anaesthesiologist to bring an ultrasound and to find a new IV line. In no matter of time everything was fixed and I was shifted to a new room and my healing started there….. room no.2323

Never imagined I would start my early 20s lying on a hospital bed, covering one side of my body with hospital gown and the other side being skinless. NEVER TAKE LIVING FOR GRANTED!

As much as I hated to be there, it inculcated the feeling to get better and leave at once.