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.

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! 

"Uneventful"

A word like "uneventful" is great when it refers to medical examinations.
That was the long story short of the biopsy report.
phew! I could almost feel my blood pressure get back to normal.
No toxicity from Tacrolimus, no rejection...
No change to medications right now. We wait and watch before taking any decisions about change in medicines.

The other nice thing was, the doctor saw me after 4 months and said, "you have lost a lot of weight."
Man!! That felt great to hear. With a daily dose of steroids, amidst all the doctor visits, office tasks, home chores, feeling dull - I have been trying very hard to do some activity on a daily basis.
All thanks to my dear husband who keeps pushing me and pumping up my motivation levels to stop finding excuses and get up and do something.

There were many days when I would have rather just slept for longer/ sat down and done some other stuff. But I'm glad I didn't.

For medical reasons, I learnt that post transplant it is very important to do physical activity to maintain a healthy weight and blood pressure levels. I knew this was good for me.

When someone notices it and tells you...if feels nice too :) - encouraging indeed.

Every day is a new day

Iron deficiency = iron tablets = stomach problems = visits to the Gastroenteritis doctors.
Some kind of block in the middle back gives me many sleepless nights and resulting wasted days = visits to the orthopedic doctors
Creatinine decides to remind us of its existence = more frequent visits to the Nephrologist
Now a recurring red spot in my eye = doc says its common during winter...

Past few weeks have had us do the rounds of different doctors, trying combinations of medications and home remedies to get the stomach back in shape + dealing with the crazy pain in the back.

All this + trying to be present (physically and mentally) as much as possible; doing as much exercise as I can; doing as much as possible at home...

Phew! I am so fed up of being a sick person endlessly. Really want some normal boring days in my life. Yes, thats me saying this. Amazing! 

Traveling with Nuo

After a lot of thinking, lot of assurances from the Nephrologist, we went on a short vacation (to Rome) - first one with Nuo (7 months post transplant).

Our usual style of road trips meant getting to our destination, parking our car in a safe place, exploring the destination on foot and/or public transport. We would usually book a bed and breakfast and head out after breakfast often only returning at night to sleep.

We knew it would be prudent to take it a lot easier than usual with Nuo, with anemia, with the medication time etc. Yet we had clearly not thought of a few things until we reached Rome. The city is big - not really walkable - so here we were faced with the challenge of driving in the crazy city center with the impossible task of finding parking / taking public transport (lot of people, touching lots of machines, handles...touched by hundred others...)

We figured our catch 22 situation with traveling:
Big city

• Advantages - better and more options for clean accommodations, food (given we are vegetarians and that right now I still need to watch for protein, not eat raw stuff anywhere etc). 
• Disadvantages - need to use public transport (metro etc), parking in city center is a problem, overall costs are higher, more crowds everywhere...

Less popular destinations/country side:

• Advantages - less crowd, cheaper, do not need to use public transport
• Disadvantages - food and acco options are limited

This was our prototype vacation. Other things we learnt.

• Sights seeing will be purely dependent on the amount of tourists in there - especially places like museums/indoor stuff. Outdoor things might be better options. 
• A mask, hand sanitizer and medications are a must in the hand bag
• Remember to take breaks, eat at regular times (the side effect of Myfortic on the stomach goes haywire otherwise), drink enough water
• Keep a watchful eye for people around (in restaurants etc) who are coughing/sneezing...move away if possible...

Given the new normal of our travel - there might have new normal on who we travel with (if so) and how too...

Spontaneous travels

Traveling is something that never ceases to excite me. Yes I used to be the 'frivolous' one.

6 months post transplant a new normal seems to be that planing for travels isn't relevant anymore. Everything depends on the bi-weekly tests, their results and what the doctors have to say about them. Of course another dependency is how we feel after seeing the reports/ meeting the doctors.

I am no longer starry eyed about the (never-ending) list of places I wanted to travel to in the world. If the forces align and I do spontaneously happen to land up in one of these places, I will consider myself blessed :)

Its amazing how quickly one's mind can adapt to new situations if it is forced to.  

The facade of being fine

Feelings, insecurities, emotions, situations, facts, figures - it's amazing how many things a patient with a chronic illness has to ACCEPT and OVERCOME on a constant basis.

• Why is it that one is expected to be strong every day/every minute regardless of what life throws at you? 
• Why is crying seen as a sign of weakness? If so, why is being weak (sometimes) a bad thing?  
• Why are we always taught and told to hold back on our emotions and put on this facade of being fine all the time?  

Changes

Interesting to observe the roles different people play in one's (my) life - each person seems to fit into a box. With the changes in my life, the dynamics with people also seem to change...

Some people have emerged out of the blue to become much closer to me than I considered them, few of those I considered close seem to be falling through the gaps, some have disappeared, others view me as the 'damaged good' - as my life currently revolves around my creatinine levels, medicines, hospital visits - I have nothing interesting to offer. Now, why would anyone want to spend time with someone like this right?

Interesting change in dynamics - another new normal perhaps! 

Friends with kids

One of the 'new normal' seems to be our restriction to meet friends who have kids. Reason being, kids going to kindergarden seem to almost always carry some infection.

This one is a real bummer cos we'd really like to play around with the kids and we always now have to check when the kids are away with grandparents/ baby sitter etc so we can meet our friends.

Hopefully we get over this phase before these kids forget who we are, before the parents give up on us and my restrictions.

*Sigh!*

Taking good health for granted

Living with a chronic disease makes me look at healthy people with a different perspective. I find it absolutely shocking how people take good health for granted - in the name of pleasure, rituals, religion, or pure indulgence.

For a patient it's a blessing to be plain alive, blessing to be able to do things on your own (like drive, go to work, cook...really small things in life). Each day when I am able to lead a near normal life without having to visit the laboratory/ hospital is a day to be treasured and enjoyed.
I am just completing 5 months of my transplant and while I do not like to keep harping on the fact that I've been through this (no I do not need sympathies) there are times when it is overwhelming.

For me, gaining as much of my normal life back is top priority - because only I know what it is like to loose it.

It's strange for me to see people place their health in other order of priorities and pushing their luck with their life. Well, each to their own!
But, what's worse, I notice that me putting my foot down to put my health on priority is not always well understood or accepted by the breed of healthy people.

Lesson learnt: Even a life changing episode (for me obviously) like this will not stop people from having unreasonable expectations from me. Now, more than before, I need to learn to focus on my priorities and muster up the courage to say, "no." 

From 7 to 2.5 lts

In India, given the weather and as per the doctor recommendation, I was consuming 7 liters of water a day.

In Germany, 7lts is "extreme."
Given it is colder, less secretion of fluids from the body...the recommendation is to drink between 2.5 - 4lts - depending on the amount of exercise I do etc.