Mar 12, 2017

Still Living with RA (Rheumatoid Arthritis)

I have had rheumatoid arthritis for almost 6 years now. And though it started as rough, disheartening and a horrible challenge to live with day in and out....I have finally come to terms with the disease and learnt to accept my fate and rather survive around it. Its year 3 now...the ride has become less rough and less traumatic.

A couple of weeks ago, I came across this American woman (SARAH ..At carrefour cafe...I love you) At a cafe. We chatted about ourselves and then she encouraged me to write about it. I don't like to write so as it brings up horrid memories, which mostly brings me to tears and leave me sad and ask the inevitable question...Why Me? Why Now?

Who do I ask this to....God...my husband...myself..my parents... where can I throw the blame...Anyways...lets not make it a sob story.

I was lost for a few years initially because I didn't know anyone who could relate to this. People would often think I'm making excuses and being lazy. Its just a year or two ago that you can see how the disease has ravaged my hands and a few joints. They aren't that bad yet...but not very pretty either.

Oh Im missing the point again. Pardon my.....some guy is hammering a nail into the wall in the adjoining flat....and Its like hes banging on my head...Ugh !

So where was I? Yeah... I found comfort in 2 of these face book pages. Will leave the link here. Ever since I started reading up on their thoughts and people adding to it in their comments...I found this peace. I now know there are quite a lot of people mostly women stricken by this painful invisible illness and their daily struggle with it by adding some humor in their lives and action...helps them survive through it.

https://www.facebook.com/GigglesOverTearsWithRa/
She is hilarious and brings me such comfort I tell you. I can relate to so many of her funny posts. God bless her for being so candid and showing me we can laugh at ourselves. Its not the end of the world. She is adorable and cheerful.

https://www.facebook.com/RheumatoidArthritisGuyFanPage/?fref=ts
He is Inspiring. He has had a rough journey and is candid about his pain and things he does. He faces a whole lot of criticism but I like him as he is a strong man...mentally and physically and inspires everyone to not live in the pain but try to see good things it brings out in you.

I have taken all the medications except one for rheumatoid arthritis...From plaquenil to methotrexate and arava and combinations and steroids and limitless painkillers and  what not. I was left with almost 120 kg weight gain...just 20% movement.....swollen everywhere...couldn't walk...couldn't  hold a spoon or brush...couldn't open my mouth wide because my jaw was frozen shut.....to add to it I was diabetic and hypertensive...losing hair...losing blood to menstruation 20 days a month.....it was all bad....then came a day when I asked my husband to get me some poison. I wanted to kill myself. I told him I would leave a letter saying I did it all by myself...

What was my husband's reaction? He sat by my bedside while I cried non stop....and stared at the walls and look at me such fierce angry tear filled eyes....He was like..tell me...tell me what can I do....What was I suppose to tell him? I couldn't say anything..I couldn't think straight through any of this...I just wanted it to end. SO he got me 2 sleeping pills that night from a friend and asked me to take one and go to sleep. I don't know how many hours I slept but after so many months...I slept through all those aches and pains for a straight 8 hours or more. I felt so good....it felt really good to feel nothing but sleep.

A few more months passed by and my rheumatologist told me that none of the medications were working and my disease was still very active and showing no signs of slowing down.

Let me tell you this...there is no permanent cure for this. All these medications ...besides ravaging through your youth like a crazy hungry cannibal.....they only slow the disease down. Doesn't eradicate it. He said I could try Humira,,,which was very expensive and not available for non Kuwaitis. I must commend that our government is so generous and makes this medications available to those with health insurance. God bless them for that .

I stopped the steroids on my own..tapering them for over a year coz I found out from some test...that my heart was getting weak.I cannot remember the names of the various blood tests right now....

4 years ago....I decided to give ayurvedic treatment a try. I thought I have exhausted every other medications and lost my sight by -2...had become very fat and gotten 3 chins and my tummy was going southwards...why not just give it too a try. AT least then I could say... yes I tried everything....It didnt work and now I will just wait for a decent death in peace., hopefully not with my underwear down, fallen on the toilet floor.

So I went back to India ...found an ayurvedic doctor and she set out a few dietary plans for me and some  medications. All the while she explained it clearly that these would slow it down and provide some much needed relief but again ..it depends from person to person. It doesnt work on some while some show surprising good changes. I was already like a blind man at the edge of the wall of the well...I didnt even need a push...I would just jump...If someone told me that there is this poison that could cure your RA...but your life would be cut short by 10 years...trust me I would gulp it down without thinking twice. Yes... the pain is very bad...like someone pulling your joints in the opposite direction.

The diet well...said..no meat...no chicken..very little fish...no gassy vegetables like potatoes...a few lentils..in addition to being diabetic and hypertensive..it meant a whole lot more things cut from my diet. I could eat 5 veggies only.Hihihihihiih......That means I would sit and salivate at a table my mom decorated with her all delicious food and all I could eat weree 5 veggies.Didnt matter...I tried the diet though I do follow it a bit loosely now...She recommended massage...my ayurvedic doctor...gentle massage.

Anyone with this disease know that massage is a big no no for us.sitting too long is a non no..standing too long is a no no...walking too long is a no no..holding anything for more than 10 mins is a non... rubbing your back a no no...wearing any heels is a no no...zipping your dress is a no no...wearing a bra is a no no...( Well...I learnt a few tricks along the way...we cannot just let things hang now)...we learn to use both hands.to brush and eat... we learn to use arms and what not to hold onto things....

I lose my way too easily....look at me..

Then she recommended some ayurvedcic medications like RHUKOT.....Ashwagandha tablets...so many Kashayams...I will put a picture of the medications....later on...All these they help your body detox....

NOW for the good part. A year into these medications...I started walking again....my joints though swollen every now and then... were at least operational. The best part is I could walk...I want dependent on my husband to go to the loo..I could walk for half and hour....Now its an hour to 3 hours. God has been great. My faith though a bit shaken initially has been restored back. THe ability to up and about...Im thankful for that. Nothing else matters.

How do I balance it all ??????

Well...I try...I stick to eating mutton or beef once a week. I eat chicken twice or once a week...I avoid and have stopped all canned food years ago. OF course very rarely I will indulge in a sandwich with spam or ham or sausage in it .But I dont keep that stuff in m fridge. I eat fish every once in 2 weeks...Sometimes some brand of chicken or eggs will cause intense swelling and pain abut then I opt for the 2 vegetables that I like the most and help me get that stuff out of my system , Namely, courgettes and carrots and peas.

Lately drinking any coffee causes swelling..so I quit that too...not quit..I have a small cup of cardamon coffee at times.I need to take vitamins and calcium as I dont drink milk That much. Its like I will try something and see how I feel the next day. If my hands swell up..I wont eat that again.

Of course...changing seasons and humidity can worsen the pain. I dont take painkillers unless I know I cant take it anymore. My pain threshold is very high now..so Thank God for that...I keep myself warm at all times as I aint very young anymore and I rather be careful than go crazy from some sprain. I wear sports shoes and flats...no heels at all.I dont push myself to do anything physically. I have learnt to listen to certain cues my body gives me. I need my rest as RA makes you tired. You hardly wake up fresh...so rest is vital. When body says..thou shall sleep even if you havent raised your finger...Thou will sleep.

SO thats my story so far.Its been a tough ride but Im glad  that I came out a strong woman....SO dont be disheartened my darlings if you have any sickness. There are of course far more worse things out there...but I have been stricken with this particular one and its my crusade...my struggle. I can only share my thoughts and feelings and treatments and story and maybe enlighten one mind ...one person who is fighting and sad and hurt from living with the illness. I know I would have loved some encouragement 6 years ago when I thought I was falling into an abyss.





Oct 22, 2016

Observation



Its been my favourite past time to sit in a place and look at people. As in what they wear...how they walk...how their face is at that moment...stuff like that. You just thought, "Oh please ! Joblessness of the highest order." It might be but people reading is truly fun.

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And like the famous quote circulating the Internet....true tears and smiles are seen at the airport. 
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You the old man sitting by the beach just staring at the horizon.He sits there with this boredom on his face.....My dad sits like that now and so I know.He retired a couple of years back and sometimes looks around and I guess wonders how his time has flown over the years.
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Okay, this isn't supposed to be a grim post.I happen to attend a festivity yesterday....And after a long time had a chance to note a few things down.

It was a diwali mela and that means it was filled with families and people from all walks of life. I saw lots of families...mothers pulling their kids through crowds...yelling at them....trying to control their movements and finally succumbing to handing them the tablet or a mobile. Their husbands excusing their wives and running to nearby food stalls to enjoy snacks by themselves. 

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I saw frustrated wives holding their small kids and standing in corners.They had this WTF look on their face while their toddlers pulled on their chains, cheeks or hair. 

You had teens who were all standing googly eyed...smirking and stealing look from boys around them.Boys stumbling around for attention.Girls flicking their hair around.....using their peripheral vision to spot boys .Guys acting all cool with pants barely hanging on their hipbones. School performances....students dancing to songs and would give Katrina kaif a run for her money with their 4 minute dances. Phew....I remember having that kind of energy.Now I break down after visiting the loo. Years....they haven't been too kind. Now being a teenager ,seems like it happened a million years ago.

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Then you have the good looking boys.They almost look the same and move in groups like the Raptors from Jurassic park.They dress the same...have similar haircuts...almost the same shades and that too worn indoors. They clicked their selfies with these gang symbol hand gestures. Its like Baaaa....yo we sheep of the same flock on this window.Here facebook and instagram...here we baaaa come.


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Then you have that chick who is wearing 4 inch heels....loads of makeup...goth like outfits...which is all black....Who is probably there with colleagues.Who is walking up and down...flipping her hair hard and blinking her colored lens fast.The Attitude....saying kneel you ppl for this goddess has come.

The you have that one guy who is good looking but has no brands to show off.He is walking up and down the crowd ...working on that smile. He smiles at anything and everything with lipstick on.I saw 15 yr olds going hihihihihi just because he stood and flashed a smile and walked off. These guys arent gutsy....they wont come up to you...they are those creepy men who like to try their luck on whoever and whatever.

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You have the old couples who walk around the crowd and wondering why have their grand kids dragged them to this noisy place and abandoned them.They walk around searching for them throughout the function.

You have the desi fashionistas.They have fabulous makeup on...fantastic outfits and are looking through all the fake jewellery stores and ...and...whatsapping. They are chatting with friends in the middle of humid stuffy place.How do they do it? I couldn't hear my own thoughts and I was screaming," Uncle pour some more chutney..this isn't enough" at the top of my voice.

Then you have me...dressed in semi casuals...who is walking around with her snack plate , all by herself and looking at ppl. 

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I actually did have a nice time but had to walk out a bit early coz the hall was way to stuffy.Plus this mom kept screaming at her son,"Ok...we will go home right this second. Let this one hour program finish." I could punch her in her mouth for bursting my ear drums but then that's the life of a mother. They cannot have it all together all the time. Poor ladies...standing for hours,entertaining their kids while trying to be entertained through these shows.*sigh*

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