When your heart wants something but the mind is not ok with it…

After taking double dose of cortishot for a week finally my body, flares and pains are under my control. Last week when nothing seems to be working anymore I have made up my mind to quit my job , stay at home and take care of my health. Of course it was not a choice but seemed like an ultimatum at that point.

   But today when everything looks good my heart still wants me to stay back home prioritize and work on my health issues but my brain says don’t be a baby you can still work on yourself while doing a job. Everyone including my kids wants me to quit and take it easy for sometime except the people who employ me and the ones who are employed by me. But the fighter and jugular in me wants me to manage all.

   Am I doing a mistake by not listening to my body and my well-wishers? Am I taking a risk? Am I being too ambitious and too stubborn? No decision in life is easy I guess. I’m little scared thinking if I take a break now I may not go back to work at all. It is not the end of the world there are so many people out there who sacrificed their careers for smaller issues than mine at the same there are people who have bigger problems than mine and going strong.

I’m taking a one month test period to get out of this dilemma. I’m back to work from tomorrow if on any day I feel that it is not manageable anymore I’m going to quit else back to happy juggling. 

Awaiting for the sign from the almighty.. Fingers crossed…

Back to square one… 

People say what goes comes back and God is it true for illnesses and ailments also. Looks like it is. My TMJ (Jaw joints) pain with flares in other parts of my body made me run to my rheumatologist and tada all my diet and hard work went down the drain. After 6 months break methotrexate is back in my life and body. Also after a gap of an year cortishot is back with a bang twice daily now. God must really hate me. Oh even with such high doses and aggressive medication there is no pain relief.

Now comes the depression and then thinking glasses. How to come out of it? It’s like poisoning myself slowly if I continue to take the above medicines but if I don’t there is no point in living with so much pain. Now enters the determination to cure myself. 

Two primary aspects to achieve the above:

1. Avoid stress, get lots of rest and make all the time available to work on myself with diet, yoga and meditation.

     This is not so easy to achieve as I need to quit my job to avoid stress and to make time for other activities. Leaving what I love and letting go of all my hard work so far not at all alluring. My husband says I can go back to work once I’m well but what I can’t wrap my head around is even after knowing everything he still thinks RA  will go away after an year or so if I’m dedicated and determined. 

I know things like diet, yoga etc will help to manage the illness but they will not cure it. The moment I start going back to work everything will go back which we have already experienced. Soon after you are off the track and drop the shield RA will be ready to attack like a demon lurking in the corners. So why not look for a balance from now? ☺. 

2. Following the regime religiously.

With my past experiences and all the readings I have the necessary ingredients to make this pain go away.

1. Diet

2. Exercise – yoga for fitness and flexibility.

3. Meditation – for stress management and psychological strength.

Now the dilemma is should we spend more money and join people or programs to follow this or should we have our own regime to work it out. My own plan sounds good as it is cost effective and also I know my body well. But will I follow through? What if I loose motivation and start becoming lazy again? Million questions to ponder nothing is simple black and white in life.

Anyways no matter what path I choose I’m ready for the battle. A battle with my self a test to my dedication, determination and courage. 

Wait and watch for my battle updates….

Temporomandibular joint (TMJ) aka jaw joints.. new victims of RA

I thought life can’t get more worse after my tumor scare but I was so wrong it can get more messy , painful and difficult without a deadly cancer looming over my head. Ra is the slow and painful ailment that cripples the whole body.

   I never liked biology in my secondary school education and due to this aversion for the subject I missed something important that there are joints in the face. Yeah learnt this the hard way when my whole face started hurting and ears have become painful. There are joints in front of ears called temporomandibular joints (TMJ) which can be affected by Ra. New learning in my Ra studies and a new milestone crossed with yet another joint falling victim to the Ra monster.

This is even more worse because swallowing is painful forget about chewing. Worst part is I didn’t cheat my diet this is just due to the fever from 2 days. God life and Ra sucks. Nothing I did to cause it and nothing is helping it. Add to it nausea and lightheadedness due to fever and I’m weak as a twig waiting to fall.

Hoping this is a passing flare and goes away sooner…

Pseudo remission…

I know there are so many people who will be willing to kick me if I say diet can give remission in RA. I’m not 100% sure if diet helps. But I can surely say there are some food related triggers that can cause flares avoiding these really helps.

After strictly following my diet which eliminated dairy, sugars, white flour, processed foods,meat and night shade veggies I can say I’m in a pseudo remission phase. If you are wondering what’s wrong with that statement I can explain. Remission is supposed to be false phase which seems as if the Ra is cured but actually it is just taking break. And these phases usually last from few months to years. But my pseudo remission lasts only for few days.

So typically for me I have remission for 3 to 4 days in a week rest are hell. Usually my flares start by Sunday evening or Monday morning to add to the already present Monday blues and will get better by mid week. My self diagnosis tells me this is due to more stress both physically and mentally over weekend and some cheating in my diet which I am trying hard to avoid.

This temporary bliss also comes with a price just like everything else in life. This diet restrictions gave me pain relief, reduced weight and improved skin tone but at the cost of my muscle mass. Looks like I drained my muscle with reduced protein intake and even though I’m not in pain on some days I’m lacking energy and strength to get anything else done.

So working out a balance in my diet which doesn’t poke Ra and at the same time give me all the essential nutrients my body needs. 

The lesson learnt from this is ” Listen to your body more than what others say because what works for someone may not work for you each body is different, life style, genetics, climatic conditions play a vital role.” 

Are RA and tooth ache related ?

We believe that medical field is so advanced with so many hi-tech machines, well qualified doctors and with so many multispeciality hospitals everywhere. But  the intriguing human body still remains ambiguous.

It took multiple visits and insistence for the diagnosis of my RA. After numerous horrendous scans and procedures my mediastinal mass (or is it enlarged node) still remains ambiguous. Now comes a mysterious tooth ache on the right lower jaw. The pain radiates into the ear and it is very difficult to chew my food.

As the story of my life goes the good doctors checked and probed my teeth and confirmed that my teeth are good and strong ( Finally some body part in good shape. Hurray !!!) and pain is not related to teeth. Oh that’s good right… No it’s actually bad as I don’t know why I have pain no diagnosis means no pain relief. Hence the saga continues.

   Here begins self diagnosis, can this be related to my RA? After the terror of tumour I gave up control on my sugar intake and decided to live my life. Now I can relate the pain to my sweettooth. The pain comes out after I indulge myself with some sweets and goes back after a couple of days. So again time to sacrifice my sugar to RA.

To enjoy good health, to bring true happiness to one’s family, to bring peace to all, one must first discipline and control one’s own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.    Buddha

As Mr.Buddha stated above maybe it’s time to make the sacrifice and control my cravings.

Hoping for the best…

Morning stiffness vs morning sickness..

In RA morning is the crucial period as you will be at the worst pain and all your joints are locked out and will be grumpy to move. On a positive note you know it will get better as the day progress and the worst has passed just hang on tight till it passes.

Doctors say it is called morning stiffness but I don’t agree with them after all they are not the ones who experience it. It should be more like morning sickness than stiffness because not only your joints but the whole body is affected. I feel lethargic, achy everywhere, drained out and drowsy in the morning after good 8 hours of sleep. There are some days with extreme fatigue where I just sleep through the day till post noon. But that is not acceptable everyday so grumpy or not the day should go on.

With some struggle and effort the joints start realizing their duty and by mid morning they will be on track but the fatigue and lethargy will be pulling me back. The worst part of RA is to outsiders you are just lazy as you look Hale and healthy from outside. Lot of people come to me and ask what’s wrong with you? You look all right to me. God I wish there is some measuring device for the pain and suffering for RA which you can hang around your neck and show it to people.

“Carpe diem” is the motto to go on with the day who knows what’s in store for tomorrow.

When escaping is easy but not an option..

Everyone has one escape channel where you can tune out the whole outside world and believe everything is rosy around you. For me my choice of drug is reading not anything but romantic fiction is what makes me forget about my problems unfortunately my responsibilities also. But being a married woman and the mother of two small kids escape is not an option in fact it is a crime.

Sometimes ( Maybe lot of times) I do give into it when pain becomes traumatic so to tune out everything and float in the world of my characters were there are no chronic illness or duties to perform only love and romance which is far from reality but feels good to be in. This makes me forget everything but again at a cost. Once the bubble is burst the fall to the reality is brutal. 
I feel guilty for ignoring my duty and kids. For depending on my husband and my parents on stuff which are supposed to be done by me. For forgetting and enjoying myself when others are working extra to take load off me. For ignoring my home or veggies in the kitchen which are rotten. For not planning or doing things in time and making others life hell by pushing them at the end. For not taking enough care of plants which are now dried up. For not sending quality time with my kids instead of indulging myself. Oh the list goes on and on.

So what is ok what is not? Whom should I blame here.. God for giving me this illness or me for being selfish? 

Hoping for a better tomorrow…