Burial ground...

Lupus and Me..

3 years of entering my life  and 2 years of documented togetherness :)  My lupus journey is one I felt should be penned , for me to remind myself of my life altering experience , if not for anything else!

Just like the beginning of any relationship which is clouded by uncertainty anxiety and disagreements, we began ours too.  I denied its existence in my life, i pushed it away, i cried when my pleas fell on deaf ears but gradually it became a part of me and my journey. One that i wouldn't have chosen if i had a choice but how often do we get to make that choice ?
My life was difficult , troubles seemed to never end ! When i thought i had to fight only my skin  issues, my eyes refused to open in light . As i figured my way around light, my knees began to fail me. When I attended to my knees, fatigue made sure i never got out of bed.  When i looked in the mirror, i hardly recognized the person i saw there. My eyes were tired, my body seemed to be a burden for my legs, my hands just dropping as if with no purpose, my face red and warm like an infectious big boil. Even in the midst of all this, if some work came by on a day when i can be out of bed, I put on my bright lipstick and stepped out as if untouched by anything unpleasant in life , very well knowing it would take few days to recover from this one day of activity.

Life became a series of unattended events, lost out work, slipped away opportunities, distanced friendships, called off plans, unanswered phone calls and probably rusted relationships too.

So, the initial  year of battle with no knowledge of  who i was up against was the most difficult one .  It was not easy to explain what i was going through when doctors gave me temporary relief and my dilemma seemed to not end. I am sure many thought i was cooking up excuses to avoid what i dislike. It was far from the truth! There are days when i choked on the most repeated words to my family.. " I AM NOT WELL, I DON'T KNOW HOW TO EXPLAIN, I AM SHUT DOWN. PLEASE DONT FORCE ME TO ATTEND THIS EVENT".

When doctor told me I have Lupus , i didn't really know the intensity of the term but nevertheless i was happy i was not imagining my issues and it really did have a name.  Once the diagnosis was confirmed Lupus, a relief flashed through me along with the awareness that this could have been much worse and I have been lucky that my organs are still intact ! SO what exactly is Lupus or Systemic Lupus Erythmetosis? In simple words, this is a condition which develops when the body's immunity, supposed to protect the body from external attack mistakes own body to be an outsider and attacks the body. Since its a systemic issue, it can just attack any part or organ of the body. In my case, my skin , my joints, musculoskeletal areas were affected . I also have other conditions associated with lupus which is Fibromyalgia where your muscles ache so much all the time that you feel you have just come from a war zone fighting with your arms and legs, Sjogrens where your eyes and throat dry up so much that even in the middle of the night you wake up with parched lips and throat, Raynauds where the blood vessels contract stopping the blood flow especially in cold weather.  Sorry to scare you all with all these terms together but these were all happening together for me at one point in time.  By the way a big shout out to those whose organs have been affected by Lupus and are still living like a boss...u know who you are..... exemplary spirit! The organ most commonly affected is Kidney. If you remember Selena Gomez recently having a kidney transplant, it is part of her Lupus treatment. Then lungs and heart are also at a risk of being affected. So we all have our annual regular check ups to ensure all ees well in our little Kingdom .

With so much happening inside me, the external pace of my life had changed completely. I was never a part of the rat race to begin with. I always had my own pace which mostly did not match with that of the world but when i was out there i made sure i belonged to the space i was in .

With the onset of Lupus, I actually saw the world pass by me. I observed peoples energy with envy.  Every morning I  watched the large crowd waiting for the morning bus and some even running to hop into the bus just leaving the stop.  I wished i was one of them running with that kind of zest towards life. They for sure find nothing special in their mundane but for someone who find tossing and turning in bed difficult with extreme fatigue and pain, it was a dream . That's when you realise the preciousness of normalcy !Lupus  made me APPRECIATE.

You know as humans, when we can no longer do something or when life puts a pause on us, we think of all that we were and all that we could do . We may not quite believe that we once did all of that with that level of vigour and passion.

Lupus was also that soulmate who came in to my life to throw light on those areas which needed my care and attention. Not all soulmates are meant to be pleasant i hear ! I longed for a normal day, looked forward to waking up with no aches and pain, walking without limping, being able to stretch fingers without difficulty, being able to open my eyes into the brightness of a beautiful morning; when even a boring day without having to worry about how your body is feeling is no more a boring day but a blessed one .  It helped me save my precious energy for what is worth. I was someone who couldn't say NO to anything that was asked of me and i tried my best to be everywhere helping and providing my service in whichever way i can. This was actually draining me a lot and what had not dawned on me was the fact that a lot of people were thriving on my energy leaving me exhausted.  Those energy Vampires ! I learnt to distance myself from them. Lupus taught me to say NO! 

Medicines galore ! At some point i wondered if my issues are from the illness or from the n number of medicines consumed .The fact of the matter was it was both !!! Blood tests after blood tests , organ tests and what not! The only effort i took to step out of the house was to see a doctor. Holidays were no more holidays, just a whole lot of checks ups and scans and tiring hospital visits. I am not sure if anyone really understood my plight. I was always active on social media because that probably was the only place where i could be active without any physical exertion. So no one quite believed when i kept repeating i am unwell.  

Added complications when i had to undergo surgeries. Lupus made healing difficult. A dental surgery which literally took the life out of me . Hats off to my doctors who kept working on me till i felt better. It took weeks and weeks to heal . Dealing with so much pain made me want to remove all my teeth and smile through artificial ones! Spare me the pain please.....

Next came the difficult healing after an endometrial cyst surgery which took a month n half to heal . All thanks to Lupus, i had the thread sticking out of my incision due to the stitch opening up from delayed healing ! Lupus asked me to REST and a little more of REST.

So why am i writing all these down? Reason number 2 ; For those who feel low about their own life and compare it to those that you see on social media, please do remember that everyone is dealing with their own battles. Some are lucky to not have any issues but the rest of us have to be lucky to let the issues not affect us.  Even as i write this i have discomfort with lack of sleep since about 3 days . With skin irritations aggravating at night, i am awake trying to calm it down .  My vocal chord is quite compromised, so i no longer sing which is something i try not to think of ! Singing was my healing balm .... anyway that's that....Lupus gently told me to LET GO....

We need to accept our life in all its forms.  If this is the learning curve, we are meant to learn. Slow down, instead of cursing our fate and being negative about it , let us see how best we can use this time to do something which we wouldn't have done otherwise. May be we have been slowed down to notice something we haven't hitherto paid attention to. Feel low, feel sad, feel hurt but also rise as soon as you can . You are your best friend, you are your trusted love, you are the one who wants you to be at your best , so spend time with You and find joy in the small things. Do not expect everyone to understand or appreciate or encourage. That's ok. Their journey is different. 

To all the warriors out there dealing with their battles like a boss....Kudos ! I have improved a lot with regards to health and i am glad i can do all that i do now :)  With gratitude to those who understood, stood by me, felt my pain, held my hand, my Lupus journey continues ....

This picture was taken at Poonthottam Ayurvedic resort when I had to discontinue my treatment due to intense  abdominal pain the previous 5 days which could not be contained even in Brufen . So here, i  am being taken to hospital for further investigation . Days before my surgery. Couldn't even walk without pausing every few seconds. But never too sick for a selfie right ? So keep smiling :) 

Porcelain Mask

                                  { PC : Pinterest }
/Oh! Why so dark ?
Eyes of mine , not big enough .
This bloated face, No way !
Thin lips are never sensuous .
Emergency !! Apps rush to my rescue
Blurring here and sharpening there
A colormode change on an airbrushed face
Cropped to Perfection!
Voila!!
As the veil of reality is lifted
Porcelain perfect mask in all its glory
ready for netizens.
Basking in the glory of
generous comments pouring
on Facebook and Instagram and twitter,
a few lines from a friend
tugs my heart chord and
Thud! i land on my feet

"Ethereal indeed , a face that
anyone would want to hold
But i search for
those eyes that sparkled
when she chuckled
the round face that spelt
Joy
the tanned skin that  spoke
of her journey , in this world so real.
Ethereal indeed , a face that
anyone would want to hold.'
'But, i see you not, my friend.' 

THiS EmPTy RoOm

For all those little/young girls/women who are oppressed in a relationship and have lost their voice. I deeply feel there will always be at least one person out there who will be willing to listen and extend a helping hand . Your task is to seek before you give up ! 
Peace and Love ! 

          [PC- Pinterest - Charcoal Drawing by Kate  Zambrao]

It once held her life,
the disintegrating pieces of her life.
The paint on the walls soaked in tears long enough,
fell apart.
The air she struggled to breathe,
The shut window knew not.
The table in the corner which mirrored her loneliness, 
bathed in dust.
The crumbled sheets, 
she wrapped herself in
smelled of insecurity and fear.
Like her wings carrying untold tales
of abuse and insult, 
the broken shelves dangled.
Just as the words choked in her throat,
the damp air remained still
and the creaking fan refused to spin.

This room once held your life
the one in shambles.
Once you were full of life, 
 of limbs and bones,
of Flesh and Blood
Of hues of sunsets
of echoes of laughter.
Oh! i wish your silent whimpers
found their way to me
before you found your way out.

I pushed open the stubborn window.
The flying flake of snow, 
now, light and lifted.
The floating cold air 
carried her scent.
Nothing to hold the limitless flight
Onward on her boundless journey
past this  room,
Empty of love.
This Empty room....

Like Never Before, I Ran !

(Pic Courtsey : Pinterest : runninglife.net )

Oh! These deafening noises
At my fastest, i ran
Away, Far away
Like Never Before, I ran.

Into the welcoming Silence.
I belonged ,or So, I believed,
settling in the lap of peace.
It grew and  grew
Into a size so enormous that
I feared it may swallow me

Oh ! This suffocating Silence
At my fastest, I ran
Away , Far away
Like Never before , I ran.


If we resort to running , there will be no end! Stop , pause , breathe , appreciate , strike the balance :) 

Mashobra - The valleys Echo !

The 6 hour long drive on the winding roads from Chandigarh after the 3 hours of flying wasn't one I expected (read: wanted)  ! The initial sights of Chandigarh filled me with effervescence; the fields of wheat and the glimpses of the north Indian way of life was a thing of interest and curiosity to me as i am more familiar with the South Indian ways.

The ascend to Shimla began covered in dust and heat. The vision was blurred by the flying light brown air. I was hungry and the thought of some Dhaba food filled my mouth and soul , distracted  me from the visual discomforts. I kept pestering my husband every five minutes reminding him of my hunger which he religiously passed on to the driver . We stopped by a decent looking Dhaba a while later. Though not very hygienic, the delicious onion naan and butter chicken was devoured with the visuals of much liked NDTV Good Times 'Food Mad' Dhaba episodes playing in my head . Must be the heat, my tummy and mouth agreed to disagree on the food !!! The warm air on the face and the warm feeling inside the tummy was not at all heart – warming.

We continued our slow roller coaster ride upwards . Discomfort in the stomach and head made me very restless. I kept adjusting my position hoping the new one would be better only to go back to the old position in less than 5 mins. How much can you adjust in a 4 seater car carrying 4 people and 3 bags ! 

Oh !! But when the heaven showers blessings , it's always received with joy. The heavy downpour was a relief initially but the narrow roads edging into deep valleys, the big vehicles coming from the opposite direction and the low visibility gave an added discomfort of fear .

I kept talking to myself reassuring that I am ok and I will get there feeling as good as I left home. We had already completed almost 5 hours and the sign board that said 10 kms to Mashobra helped me relax a little not knowing that the 10 kms in Shimla is as long as 150kms in the UAE !!!!

All said and done...Mashobra received us in all its splendour . The mist around the cottage was one I had envisioned everyday before drifting off to sleep. It’s a routine actually. In the hot country that I live in , I create my own visuals of bliss during my bed time into which i snuggle peacefully. 

My husband's college friends were all eagerly waiting for us at the cottage to begin the party. They meet every year to relive the college times .  They share stories , discuss people , laugh over the imprudent acts, ponder over how much life has changed for each one, observe the spouses and kids with affection and curiosity. Friends who walked around care free once are now responsible fathers and mothers.

The bonfire , the dance , the steaming hot food was all worth absorbing. 

The beautiful roses bloomed in its full glory around Shimla which reminded me of the song 'Tum aa gaye ho,  noor aa gaya hain....' featuring the natural actor Sanjeev Kumar and the very gorgeous Suchitra Sen in the movie Aandhi. Such beauty that go beyond words.  

The tall trees around Mashobra took me to the woods I had experienced in San Francisco and it got me thinking how nature has been unbiased in giving the east and west it's best ! It's the level of maintenance and respect from us human beings that decide it's course. 

The shops selling the pashminas and rich embroidered kameezes adorned the steep , narrow, two way shopping street called The Mall road where vehicles are not allowed.   The mostly calm and undisturbed drivers with almost unbelievable control on the wheel brought in a sense of peace in an otherwise chaotic ambience. 

Our stay was at this absolutely beautiful resort with a breathtaking view of the valley where I experienced one of the best hospitality ever . They took care of us to the extent of bringing us packed rolls and sandwiches for lunch from the resort to our places of visit. This really was not a service that could be dismissed off saying 'we paid for it '. The delicious chappathi/chicken rolls , paneer rolls , vegetable / chicken sandwiches , various juices / soft drinks and not to miss the plum cake and berries for dessert , all packed well in the picnic basket was relished on , relaxing against a tall tree watching the beautiful  landscape of Shimla. 

The cold nights with mild drizzle were like the ones off the pages of a Ruskin Bond story. The all encompassing silence was a stark contrast to my Dubai that comes to life at dark. 

As i gazed into the depth of the valley , I thought of all the stories ; rational and irrational , of love and hatred, of ecstasy and agony, of  togetherness and solitude  that it would have witnessed and buried in its abyss. 

 Three nights and four days  of the college alumni meet gave the valleys a lot of laughter which echoed as we drove off …

Silence on Wings

[Image Courtesy: anime-pictures.net]

Hey! My fellow warriors
My arms around you
For the wars you wage
Until you melt away
In the cosmic bliss!

Arent we all battling
From an age so young
Some are noticed
Some grow suppressed
Some we win and
Some we let them win !

Challenges dash to us
Calculating a fall and
A recoil into stillness
They know not
We hide Nerves of steel
Behind our honest smiles

Oh! Paralyzed it is
To be the blindfolded battler
Twirling the sword in the arena
Every chance we miss,
Is its opportunity to flee
spreading a vicious grin

Pain, the constant companion
Filled our days with doubt and misery
To our mirrors , we babbled and
Our pillows dried our tears

Through the woes and gloom
A strength that blooms
Is the strength to combat
Strength to stay true
Strength to make peace

One word of caution
To the forces trying hard
Its in you
To silences us, but
Slashed our wings are not

Silence on wings
Flutter until they deafen you
Silence on wings
Shall soar beyond your reach
This is a war
We wage to win!!

Dedicated to those battling chronic illness , in the body or mind or both !!