September 23, 2009

Rheumatoid Arthritis - my experience :)

Rheumatoid arthritis (RA) is a chronic, systemic inflammatory disorder that may affect many tissues and organs, but principally attacks all the joints. About 1% of the world's population is afflicted by rheumatoid arthritis, women three times more often than men.

Last year, I was carefully handpicked into this 1% of the world's population! When I travelled to Minneapolis, US in the winter, I was all excited about my first snow fall, making a snowman, seeing the white world and taking all the snow rides. But less did I know that my life was going to change for a while (or may be forever :-/). Though my stay was all that I had dreamt of, I went back to India with a gift: Joints pain! It started with the wrist and the fingers. I thought it could be RSI because of laptop usage, took medicines, physiotherapy, but it didnt work. Changed couple of doctors, and took lot of tests at the end to realize it was RA.

When I was first diagonized, I did not take the illness (just like anything else in life) very seriously, Fine, I have a problem, I need to take medicines, I'll be alright, was my thought. My orthopaedic doctor reffered me to a Rheumatologist, Dr. Satish Kalanje in Bangalore Hospital. When I first met this doctor, he explained me what the problem looks like and the only solution to it being DMARD (Disease Modifying Anti Rheumatic Drug) which comes along with lot of side effects. But a lot of times, the disease vanishes itself within 6months, so, they will not start DMARD until the disease establishes itself. So, he put me on painkillers and asked me to go back after 3 months. The only thing I had asked him was, Can I go to my Dance Class or not, he had smiled and said, wait for sometime. (heh, I still dont know how long that sometime is!)

I was told that among lot of other side effects, while taking a particular DMARD, I was not suppose to conceive. Though I was just 8 months away from my marriage and forming a family was nowhere in to the radar, the thought of the drug having any relation to pregnancy scared me. At the same time there were a lot of people whose uncles, aunties, cousins, grannys having arthritis, who condemned the idea of taking alopathy and asked me to take Ayurvedic. So, my next step was Ayurvedic Medicine. By now, my joints pain was extended to all 3 joints in each finger, wrist, knee and back and I started living on 2 painkillers a day. the problem is very werid, if you are sitting at one position or lying down without moving, there is absolutely no problem, but the moment you move a bit, it pains.

I meet a doctor, who as all other Ayurvedic doctors, HATED English medicine. He explained, this problem is because of the cold climate and the fluid which acts as a greese between the joints gets hard during cold and that is why it opposes movement of the joints. He asked me to stop the pain killers and start with his black color golis. The pain I was having was unbearable! along with this, someone suggested start taking Neurotherapy Massage. Though while getting it done, it was giving me some relief, nothing much changed through out the day.

I had started limping, everyone in office had started noticing me and asking if I was alright. I lost 6 kgs of weight in 3 months, I used to love just lying down in the bed like a dead body, at night during sleep, I used to wakeup each time I was changing the posture, because it used to pain. When I wake up, if it is early morning, I did Pranayama and then sleep again. By now, the disease had spread itself to all possible joints in my body, including the joints at the jaw. Because of that, I was not able to chew anything hard.

My grand mother who is 87 years old, used to bend and touch her hand to the ground and tell me, you also do this, its not very difficult, I could just smile and say I cant :). I remember going to a Kamath Restuarant along with my dear friend Rao and eating set dosa. Aunty later told me, she had gone home and cried in front of her seeing me struggle to chew the dosa. I remember one day shouting at my mother for adding lot of urid dal and channa dal in upma because I couldnt chew. I sometimes wonder how I managed the dance program in office, Goa trip and Dandiya during last Navratri when I had so much pain. One thing that stands out of my memory is having panipuri with my cab gang in office Cafetaria and not able to open my mouth fully for even the smallest puri :(. I'd gone to the ladies room and cried that day :(. February was my wedding and it was November when I was still limping, not able to sit on the floor, not able to climb the stairs etc.

That was when it dawned on me, that I should get back to allopathy. thats when I realized, let me be relieved of the pain, I shall battle the side effects, and let ME survive first, and then, I can think about problems related to conceiving :). So, I went back to Dr Satish Kalanje again. Got nice scoldings from him for ignoring the disease. Last 6 months of not taking any medicines for the disease had taken its toll. The ESR count which is supposed to be 0-20 for a normal person and was 35 for me in the beginning, had gone upto 100 when I went to him. I started with Methotrexate (DMARD) in December and slowly I started recovering. By the time of my wedding, though I wasn't able to sit on the floor, I could dance happily on the DJ nite, previous day of wedding ;). I did not know being normal was so exciting :)

I dont know if i'll ever be able to go for trekking, or join back my dance class, the disease might actually come back in the winter, especially now when i'm in a colder country. But you know, I have seen the worse, so, I should be able to manage even if it gets a little bad :). Besides Parents, I owe a lot to Aunty, Rao, Nichu, Joyee, Manju and Hero for all that they are :) Thanks for being the pillars of my strength! Only those who saw me during those days, knew how I was. I feel happy when I look back, I didn't do that bad after all :)

PS: I have not exaggerated or made RA look bigger than it is. This is what is my experience has been and may be if someone is diagonized and starts the medication immediately, they will not have to go through all I did :)

24 comments:

Art said...

OMG!!! My heart really went out for u. I am sure ur mom must have felt that the world is torn apart, when u were suffering so much...

I hope the medications give u much more strength during winter...

Take care

Khushi said...

Oh Yeah Art, she was very much down. This has been one more reason why she changed her mind for my so called love marriage :)
thank you :)

Sindhu :) said...

Aw!

I was all ok when I started reading this, but going down - felt like this should probably not be taken lightly at all! Better off doing something right from the beginning once its been diagnosed.

Please take care.. and considering winter is coming up, I guess you really need to be careful!

And if its going to help - lots of warm hugs from here :) >:D<

Khushi said...

Ohhh it surely helps.... thanks Sindhu, lots of Warm hugs from me too :D

Vidya said...

Time to time when I read your posts, I see a very bold woman hidden beneath the fun-loving, girl that you are... and what even amazes me is was I so wrapped up in my own thought and work that I did not notice your pain? Or were you too good with your acting that you were able to hide it from Sang and me - especially Sang, who is so used to doing detailed reviews and writing exemplary test cases?

3rdeye said...

My dad recently joined this elite club and learnt about it.

3rdeye said...

Oh okay i had left the comment to help you visit my page. Ok iam having memory loss oflate

Khushi said...

Vidya, Sang was moved to the other office during this time, thats the reason it dint go into your mind also :)

Good luck to your dad Vaishnav :)

Khushi said...

Vidya, Sang was moved to the other office during this time, thats the reason it dint go into your mind also :)

Good luck to your dad Vaishnav :)

Chaitra Mithare said...
This comment has been removed by the author.
Shimogait said...

Seriously ee post oodi hotte ondu thara ayetu... Felt bad when I read that you had problems chewing...

Take good care...

S said...

I just accidentally clicked on your blog link in my fav list in IE today....hats off to you...you have managed it very well.... emotionally. I had no idea it was this bad.

I am sure it will go away very soon dear...

Nannu

prashant said...

Hi Khushi, accidently on internet i read ur blog and it was too sad.
How is your pain now and is it getting better with treatment??? London is famous for great doctors, i am sure u will be alright

Renuka said...

Hello Khushi!
I have the same story as yours! Went to Santa Cruz (CA)USA for 2 years and back here with RH. I was searching for a Rheumatologist in Bangalore and your blog came up.I was on Methotexrate and every thing was falling at a right place and I decided to move to homeopathy and it backfire me!I also took up a job of teaching and it is really, really stressful and painful!I am not able to unlock my house door or brush my teeth with my right hand or even dress myself! Now I am back on Metho again but it is taking time and I am scared to even think about Steroid as a treatment(The US doctors had put me on Prednizone for a couple of weeks).Anyways, I am planning to see DR Satish and hope things will be alright again.
I am happy to know that you are feeling better! take care and all the very best!
Renu

Nisha said...

Hello,
Can i get Dr Satish Kalanje's contact number & address? Even my mum is suffering from RA. She is nw unable to do any work. Is ths disease curable? N hw lng it ll take 2 cure the disease?

Ajo Paul said...

Hi,

Just like Nisha, I would like to consult Dr. Satish Kalanje for my wife. If you have any info about his whereabouts in Bangalore, kindly let us know.

Ajo Paul said...

Btw congrats on your recovery.

Viknesh said...

Thanks a lot!! I am facing the same problem and I tired of taking pain killers and I am suffering without taking painkillers.

I already went to Dr.Satish .I thought it is RSI.After reading your blog I am going back to him after 4 month.Thanks a lot

Hoping to recover !!!

Viknesh K

Chatter said...

Renuka, Vaishnav, Vknesh, could you please share your email ids? It'd help RA-ers connect. Connecting with fellow RA-ers in India has been a big pain...comparable to the pain of the disease itself :) I am an RA-er too. Mine is pretty much a repeat of Khushi's story with slight variations perhaps. I am reachable on chitchatbrat@gmail.com

ding said...

thanks for sharing your story. i had RA diagnosed 5 years back, and was taking the methotextrate and another medicine for around 2-3 years (with tapering dose). later i moved to homeopathy, worrying about the long-term side-effects of the allopathy. now again after couple of years of homeopathy, it still there and reappears frequently with swelling and pain in knuckle joints, and toe-fingers.
i am agai thinking of going back to allopathy, and one of the physician has refereed me to Dr. Kalanje. i have the appoingtment on Tuesday(Nov 15th). let me see wat he says.
TC.

Unknown said...

hi i am facing same issue and looking for Dr. Satish Kalange. he no longer visits Bangalore Hospital, does anyone know which hospital he visits now

Ajo Paul said...

Last I checked, he consulted at Columbia Asia near Yeshwantpur. (Next to Metro cash and carry). Do call and confirm.

Jindal Naturecure Institute said...

Very personal blog! I applaud your initiative to chronicle your personal experience. I too suffer from rheumatoid arthritis and it does become worse in winter! I am opting for rheumatoid arthritis treatment in Bangalore - at a naturopathy centre and I find manipulative therapies such as massages, hot stone treatments and steam baths effective. You can try out these along with your medicines. Here's wishing you a long, happy and pain free life :)

Unknown said...

Vikram hospital Bangalore. He is there mow