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| PKD |
| Friday, November 20, 2015 |
I promise to try to not make this a sobby depressing blog. Because really who wants to read your sob stories.
I will just write once about PKD and be done with it. Ok? Ok.
I told my parents. Because I think it is not fair to hide anything from anyone. Not fair at all. My mom is very worried. I am pretty sure she has been crying a lot because I got a call from her at 11PM her time, when I was in a meeting. I had to take it because I knew she just wanted to talk to me. And then she couldnt. She spoke a little and gave it to my Dad. Then I realized I have to be strong for my parents. Guess what they told me 'Sorry'. Yes, sorry for giving me the best life beyond their capacity possible. I have been crying at times. I dont know if I should be concerned for my Mom or myself or JSK (she has a 50% chance of having it, since I have it) We do plan to have a kidney fund for her along with her college fund.
I am going through the different phases of accepting that I have this. Asked the 'why me' or 'why us' question. Realized I may not be able to actually roam the world after 60. I may be forced to stay in one place. I cannot eat whatever I want. Which is actually a good thing, now I have to really be on a 'diet' the PKD diet. I think I can still hike, and workout.
Ever since I heard about this, some of the minor inconveniences I have had that I had discounted as workout pain or lazy ass pain, seem to make sense.My tiredness in the evening makes sense. I used to ask DH 'Why am I like this?" Now it makes sense. Literally the life of my kidney is limited. I have to keep it running for 25 years more.
One part of me wants to give the middle finger to the disease. The other part wants to curl up and like not face the world at all. I have been meeting people, at work and everywhere, everything feels so superficial, I dont feel like chatting about anything. Because this feels more near and more real.
I am trying to get an appointment with a nephrologist. Turns out kidney diseases are common. And dont kill you right away. So it is okay to wait for a month or two to get an appointment. My appointment might not be until January. My Dad tells me to wait and see a good doctor. But I want to know which stage I am in. I doubt if I am in the early stages, because, well because I have seen the results of the ultra sound. Until then I will have to follow the tips my mom has gotten from her doctor.
I think one of the challenges with this disease will be my social life. I can travel I guess but I have to be particular about what I eat.
So I think thats it about PKD so far.
Life is otherwise good. JSK keeps me normal. DH keeps me sane. I thought I will slip into depression. But I cannot drop everything and lay in bed all day can I. Now that I am a responsible mother of one. Thankfully only one.
Yesterday there were cops near our house. Our very own Paratha neighbour's home got broken in. Whoever did it, broke the backyard glass door and then saw the alarms and left looks like. Aunty found it much later in the evening. The shattered door was covered by curtains.
JSK and DH went to see, I was at the gym. The moment JSK saw the broken glass and the cop said 'I didnt do it' to the cop it seems. Getting her name cleared first she knows her purpose. ;--)
We have the alarm, we are planning to get a camera installed too. Although I have no idea what anybody would want to steal from our home. No jewels. May be laptop. TV, take it, so we can get a new one! Tesla cannot be stolen because we can track its position and catch the guy.
Talking of Tesla, Mia has been giving rides to friends for lunches this week.My friends are all super in awe of her. It is always fun to hear the screams as I push the accelerator. ;--)
Happy Friday!
This weekend we have to go to Michaels and buy stuff to work on JSK's doll project. She has a birthday party to go to. I have to get my expense reports in order and prepare for a brown bag session on Kenya trip. I have to catch up with work a little. Since I have slacked this week. I didn't want to slack. But I have been terribly distracted all the times I was not in a meeting.
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posted by SK @ 11:18 AM  |
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| 10 Comments: |
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Hugs to you and wishing you all the very best on your journey dealing with PKD.
Lately I have been questioning my choices and sometimes the way I am stuck up on stupid things when life is so fragile. I lost a family member a couple of days ago due to a pregnancy related complication. Her baby is about 7 months old. Have another friend in US who was diagnosed with an extremely rare condition after delivery and is now on life long treatment. Her treatment expenses will run into millions of dollars per year if not for insurance. Atleast in US, she has treatment option. In India she would have ended up with Chronic renal failure. I went to a patient support group meeting with her and heard some heart wrenching stories.
All we can do is count our blessings and do something everyday that counts and not take life for granted
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:( Hugs SK.
I really hope things get better in terms of treatment. A friend's doctor apparently said that things are constantly changing in medical front, where for certain rare issues when they didnt even know the cause ten years ago they now have treatment options.
I do hear this often about people waiting for couple of months to see a specialist, dont get why that is always the case.
Beat PKD down.
PS: lol on JSK clearing it with cops. She knows the right people to clear it up with.
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I have been living with a transplanted kidney for the past 17 years. Chronic Renal failure at 22. Do not fret about the PKD. Medical science has advanced a lot in terms of kidney diseases and even with kidney failure/ transplant.
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How can I help? Ping me when you are in Folsom please. Until we talk or meet, hugs and much love!
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yo! you are very strong- rememebr that. please call if you want to talk. or if you need anything,lemme know!
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thanks newmomontheblock! Just what I needed to hear. There is so much sadness around, why shouldnt we have our share?
Sachita, thanks dear, hope beat it!
Survivor, WOW, can I contact you and talk to you? God bless. thanks for the words.
Shachi, thanks! will definitely ping you when I am in FM.
Daisy, just what I needed to hear, thanks!
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Yes you can. email id is "shobarao@gmail.com" I can give you a reference to an awesome nephrologist.
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hey sorry,dint visit your blog for sometime,just reading this.It is a difficult time.Problems with our body can make us feel very lonely and of course like you said,can make us ask this question "why me",when of course we go an extra mile compared to others to take care of our health.But i guess,we have to stand and face this,which you will,like a champ.
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Thanks Shoba!
MK,
thanks for the confidence ya!
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All will be well...love, prayers and hugs...
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Hugs to you and wishing you all the very best on your journey dealing with PKD.
Lately I have been questioning my choices and sometimes the way I am stuck up on stupid things when life is so fragile. I lost a family member a couple of days ago due to a pregnancy related complication. Her baby is about 7 months old. Have another friend in US who was diagnosed with an extremely rare condition after delivery and is now on life long treatment. Her treatment expenses will run into millions of dollars per year if not for insurance. Atleast in US, she has treatment option. In India she would have ended up with Chronic renal failure. I went to a patient support group meeting with her and heard some heart wrenching stories.
All we can do is count our blessings and do something everyday that counts and not take life for granted