Everybody hurts

Not everyone knows the details about the small day to day nuances of living with a transplanted kidney - the compromises, alterations made over time to make one's life seem reasonably normal. 

some such people choose to remain ignorant, hoping i as a patient know what i need to do; some others, despite being ignorant choose to advise what i as a patient need to do. 

the ones that hurt the most however are the ones who choose to educate themselves about such illnesses, only to cherry pick information that suits them - to ensure i remain in a reasonably healthy state just so it ensurers i am able to fulfill my duties and responsibilities towards them (despite they being in better physical condition than me.)

i recently experienced this

needless to saying, it hurt me to hear the run down philosophy thrown at me again, "you will be healthy if you are positive. Just live with us and things will be fine."

ironically, the people who i heard this from, have to be squeezed to get any drop of joy from their life (if so). They have depression issues they don't accept. Are most bitter about life, not able to let go...worst of all - are the same people who accuse me for being too frivolous about my life, as my ways of finding joy and remaining positive doesn't match theirs. Sports, travel, a creative career, music - not things that fit their frame of being means to be positive.

hurtful as it is to have to deal with such people.

i realized, at the bottom of it, a person who needs so much care as me, does sooner than later does become a burden on everyone - when people's 'expectations' stop being met on a consistent basis due to my illness related issues, it impacts their life. how they choose to deal with the impact is firstly, their choice and secondly, not too much in my control.

i realized, regardless of who it is, what they think about the way i protect myself from further damage, i need to be way stronger to put my foot down. 

most of all also get stronger when i will get to hear the flack for putting my foot down strongly. 

Redefining my 'career'

For most of my career before my illness I was a high achieving person. 

Since the illness, this aspect has been steadily declining. 

While initially I justified it due to the absence. 

The bigger fact is, things have just moved on...

The hard reality that, nobody is indispensable. 

No, in the corporate world, people don't care if my recent achievements are that I have ensured my blood pressure is under control, that I have managed to loose weight despite being on a daily dose of steroids, that the reason I work a bit more from home is so I can avoid catching an infection in the flu season...

All this, so I can be available, catch up on lost time and once again be seen/considered a valued employee.  

No, the corporate world has no clue what life changing experiences does to a person. They just expect the same 'templatized' behaviors, responses, deliverables...

I also happen to be in a culture where emotions and personal situations have no place in the workspace. 

Co-incidentally, a very senior person in the organization also had such an experience recently and was quite open about it. Later, on seeing a little less 'aggressive' version of the same person, the rumor mongering began... 

While on one hand it felt comforting to me that its not just me who is being received with a question mark by some colleagues. But on the other hand I feel disappointed to realize that the corporate world is a place only for the healthy, go getters who can fight their way, grab opportunities and run with them - that's what is celebrated and termed as the 'success.' 

Perhaps people like me have learnt (the hard way) that there is a lot more to life than this. 

Functioning on a daily basis in an environment that is always pushing you to compete, to yell and scream and market yourself, to be 'visible' does prove to be a challenge when none of these things seem meaningful anymore...when life seems much too precious to be wasting my energy on these things...

Yet, one needs to. I need to. 

People ask me, "if your perspective has changed, why do you care about these things?" 

I care because I am as passionate about what I do as a professional, I'm as curious as I was about the world. Perhaps I am even more determined to make some meaningful contributions but I need some time to re-focus. Some empathy - NOT SYMPATHY and some support. 

Unfortunately the system and perpetual deadlines don't offer this space. The broken system of performance reviews of the corporate world will soon mark me a "non-performer" and it would have nothing to do with my competencies. But nobody will ever know that or bother to find out.  

Finding a place for myself at work is the latest challenge I have.

Rising above my illness and problems

Its interesting to notice, as a person with a chronic illness and perhaps some challenging life situations, everyone around me seem to now associate nothing else but this aspect to me.

Nobody seem to want to know how my job is coming along, how are other aspects of my life panning out.

I greatly appreciate the concern everyone has by asking how I am doing (health wise). I understand the dilemma they face - if they don't ask me about my health they might think they are being insensitive...
However, my illness and difficult situations in life is not my identity.

I try every day not to let it become my identity.
I try very hard to not seek and live on the sympathies of everyone, to continue to keep my independence as long as I can.

Nuo lost a friend

Just when I thought the worst time of my life (so far) was over, as I completed 1.5 years of my life with Nuo...now comes another testing period.

Out of the blue, I lost my dad. He was fine, going about his life and chores at home. He had complained of being tired, had even met a couple of doctors, including a Cardiologist just 4 days before he suffered a severe heart attack and left us all. No red flags were raised by any of the doctors. His hypertension medications were altered and thats it.

I was looking forward to spending a relatively stress free, vacation with my mom and dad in Dec. But destiny had it otherwise.

Dad was always upbeat throughout my rough times before and during my transplant process. Partly out of his ignorance of such complicated illnesses, partly for just being himself.

At 77, he would accompany me to all the local government offices we had to run around for the legal paper work around my transplant last year. His social skills often made it easier to deal with the otherwise difficult government officials. He prayed with all his heart for the transplant to be a successful one.

He was the rock at the worst of times when mom (after her stroke) and I lay sick in different rooms in the house. He took over the house, the kitchen...everything to ensure we were both back to our normal self. Over the year my dad really helped mom get back her health, recover from her stroke fully - mostly by himself.

Amazing.

He leaves a legacy of having lived gently and cheerfully. Indeed. I was overwhelmed with the attachment so many different people had to him across ranks of society.

Its been a month (today) of living without the one man in this world who would love me no matter what I did/said/felt...It is extremely difficult.

After the transplant process many people tagged me as being a strong, brave woman. I did not have an option then. Now yet again, fairly soon, I am expected to be strong and brave again!!! Again, I don't seem to have an option...

But this time around, I find myself a lot weaker...

To my loving Dad...RIP. 

My first 5 Km run after...

The Race for Cure 2014 in Frankfurt, was on my plan since we got back to Germany in Sept 2013 after my transplant. I aspired to run 5 kms at this event.
While I knew, if I wasn't able to, I could opt to walk 2 Kms, I wanted to keep the 5 Kms goal.

I kept myself as active as I could, but it became challenging to get my daily dose of exercise in the last couple of weeks up to 28th September as we played host to visitors at home. I wasn't sure if I was fit enough to do this.

It was hard to shake off the urge to get back to sleep at 6:00 am on the cold, 28th morning and skip the 1 hr drive to Frankfurt.

At the venue I was among 7,000 other participants. :-O
While I got my white t-shirt and company sponsored cap, there were others in pink t-shirts - the 'survivors' and yet others who had a card on their t-shirts with names of loved ones they lost/ praying for...unbelievable spirit.

I hydrated myself well.
A butter pretzels and almond milk and I was at the start line.

The weather was good for a run. I let the fast ones pass me...and ran at my own pace. One walking break as the road went uphill and soon I could see the Finish line and the crowd cheering.

47 min and I finished the long awaited 5 Kms run.
I felt proud of myself :)

This was my first even participation in an event to run. I am really glad that my participation was for an event that helped some people who needed it/ would benefit from it. I am so glad I did this.

Thanks Mom and Nuo :)

Group travel

Just got back from the first group travel after the transplant :)

Traveling in a group is always tricky...gets trickier when there are many restrictions and cautions to be considered. 

At the outset, one of the co-traveller started to sneeze and we had a long 6 hr car ride ahead of us. Phew! Out came the masks, hoping I don't catch an infection. Thankfully it was an allergy and not a cold.

My husband and I soon realized we were the party poppers for the highly energetic - active holidayers with us. I was never the early bird but, my anemia left me quite low on energy most of the days. 11:00 am was the earliest I could get myself out of the apartment most days. The usual practice of exploring every city on foot, exploring every sight and street regardless of the weather definitely did not excite me anymore. The thought of it made me tired. 38 deg centigrade did not help. I knew, walking in the sun and heat would result in a headache, resulting in high blood pressure, resulting in...

Only a transplant patient and the primary care giver understands the fear - each ache and pain that comes along might be related to the transplant. So there were days when I had to excuse myself and stay home - so as to not be seen as the perpetual whiner - the sick co-traveller. I knew that meant we would not see some of the "must sees" but it no longer mattered. 

While I have always followed a daily exercise regime, have managed to loose a lot of weight since the transplant, it clearly was not enough to keep pace with the fittest. 

• the schedule of my medicines 
• the need to watch what I eat and drink 
• the need to use the restroom frequently owing to the water intake 
• the body feeling low on energy...the need to take it easy...

All of these become needless interruptions for the foot loose, healthy fellow travelers out to explore the place, see and experience it all. For me on the other hand all of these necessary interruptions reassured and reminded me of the permanent nature of my illness. 

Being in a foreign land, away from my primary Nephrologist and center, made me extra cautious. While I try hard to keep the traveller spirit alive, the worst fear I have is being in an ambulance in a foreign country, not able to explain my whole medical history in a common language and getting some common, off the shelf pain killer/ drug that will cause damage to my kidneys. 

Such situations made me realize (once again) - there are far too many nitty gritty details to this illness. 

Perhaps the upcoming check ups next week will indicate how well I took care of myself during the vacation.

As of now, the lessons learnt: No matter how cooperative the group, sufficiently warn co-travelers about my constraints and the many ways it could potentially impact their plans. 

Sigh! 

A year with Nuo

This day last year my mom, aged 68 donated one of her kidney to help me with my CKD.
I cannot feel grateful enough.
Thank you mommy. I wish and pray that your noble deed serves its purpose as long as it can.

It has been a bumpy year but we've learnt to live in the moment and appreciate joy. We've learnt to appreciate the color gray and live with it in peace. A lot of things have changed, but we have welcomed each aspect of it with open arms.

V and I have come a long way together with this life changing experience. Despite all the upheavals, we seem to be able to find peace within situations.

Thanks for all the love and support from all of our friends and family. It gives us immense strength and encouragement to have you all around us (physically/mentally).

Hoping to spend more such anniversaries together with Nuo in this journey called Life :)