07 September 2019

"So, have you got rid of the cat?" was the question I got when I walked into the Pulmonologist's room yesterday. I just smiled at her. The usual weapon. I practically believe I charm people with my smile. So there.

Believe it or not, that one cat have had his fair share of being the focal point of the dramas in my life. Yesterday was just another testament that the cat is not going anywhere.

That being said, why do people keep trying to remove the cat from my life! Well, its because they are not the same people who got kicked out of my life for threatening the cat's existence. 

Anyway, the doctor then saved herself by saying "sometimes we need pets in our life" or something. I was seeing her about my Mild Pulmonary Fibrosis which I got as a result of an autoimmune disease known as Mixed Connective Tissue Disease. Very rare disease. I think my first Rheumatologist told me that he had like 500 patients for Lupus / SLE but only 3 for MCTD. That's how rare it is (I didn't like him and changed doctor now).

A GP once asked "do you know that there is no cure for MCTD" and I said, "I always know that I am special since I was born" and she burst out laughing. 

I mean, I was born with Psoriasis. I've lived my womanhood with PCOS. Just add one more abbreviation to seal the deal.

I was warded for  three nights last month in her hospital because I had a cough and she told me that it was because of my GERD (which I also got as a result of MCTD). She now said it was so hard to treat the cough because I had a cat. There is something in the litter that could cause infection in my lung. She wanted me to get rid of the cat. But I wasn't warded because I had lung infection. There is no evidence to show that I was coughing for 3 weeks because of Bara. Anyway, I rather die than losing my only housemate.

I think by now, people who read this probably want to strangle me for being stubborn about the cat even as this "story" barely started. I am struggling to explain 5 years worth of life in a post here. I probably won't even finish. So the cat become the focal point again for now.

I didn't really plan to write today or any day. I have graduated from blogging about my life to a few unintelligible sentences on Twitter, cryptic captions on filtered photos on Instagram and daily IG stories which then fades after 24 hours. But people are so curious now because my physical appearance is different than who I was a year ago. I lost 32kg and I look so hot that I went out on dates! haha. Seriously though, I can't even figure out where to start or whether to start at all. I usually straight away answered by churning out healthy lifestyle tips which I really did follow but it does not really solve the mystery of what happen to Sarah?

Sarah thinks she is dying. That's because she always expect the worse while doing her best. Which is why she surprised herself when the CT scan show that the lung improved.

But I really am dying. MCTD is a chronic illness.  In America, I read that people applied for social security once they were diagnosed. We don't have that here. But everyone is dying too. The difference is I know why I will die and feel that I am sick and dying. It could be years (I give myself 3 - 20 years) . But it will be years of struggle. I could also die a quick one due to road accident. So is everyone.

But the lung improved. That will probably add more minimum years then.

She showed me where it has improved and was quite impressed and said "ada kucing pun boleh baik." To which I replied, "Remember when I asked 'why me' You said Allah chose me because I am strong. I also pray to Allah to heal me. and this is it."

That was just one of those rare moments that I let out a proper deep sentence without offending anyone. 

On normal days, I will just unintentionally reply with some form of conversation stopper e.g: 

Person: "I read there were 4 women for 1 man in Malaysia. That's why we marry up to 4"

Me: "But for the past 2 years the Department of Statistics said that there were more men than women in Malaysia. Its good news because when the existing men marry more than 1 there are just so many more single men to choose from by us single women."

Person: .....

Anyway, I was so happy to know that I can get better despite being stubborn about Bara.

I then asked the pulmonologist, "But you said my lung is already scarred and therefore the whitish part won't heal?"  and she said, "if its ground glass it can heal. But it won't heal if it was honeycomb"

That was the first time I heard the word honeycomb in relation to my lung. Whatever, I am already torn between tears of joy and ignoring this whole thing as the news did nothing to change how my body function daily. 

The lung has always been functioning (at least normally) although we know its under attack by the autoimmune. Its the daily struggle that did not change. Which prompt me to write today. I now hope I can finish this.

On daily basis, I don't know which day will be a really bad day. I have developed a routine where my alarm will go off and my cat will jump on my bed to wake me up. I am awake but I need 15 minutes on a good day to 30 minutes on a bad day to lie like a log because its painful to move at all. I then slowly proceed to turn off the alarm (whole arm in pain), switch on the lamp and that's it. I need another 15 minutes to raise myself and just sit beside my bed. I then very slowly raise my arms and switch on my Bluetooth speaker. I listened to my Spotify playlist. Sometimes I sing along. Post that song to IG story as the first sign that I am alive for the day to my 5 guardians. Just to fill up the time because I can't stand up that quickly if there is no one to lift me. There is no one. lol. 

Once I feel like my knees are strong enough (they never were, I just got tired of waiting or maybe I was gathering my willpower), I push the palms of my hands to my thighs and try to lift my whole body up to a standing position without touching anything else as my fingers and wrists also hurts. It all hurts. I then walked like an 80 years old to take my first pill of the day. It told me to eat it one hour before food. Its for my GERD. I then try to fill up that one hour to heat my breakfast which is usually the rice porridge I bought the last night. As my body move, the joints got lubricated and it gets better at moving and it became less painful. I shower (struggled to sit at toilet so I used a cane which I asked from my best friend who kept it in her car because it was used by her father who then passed away), pray (sitting on a chair), struggle to put on my clothes as I cannot bend my arms much and then eat. 

Right after meal, I will swallow Plaquenil 400mg, Prednisolone 2.5mg and Vitamin D which are all compulsory daily for my MCTD. I drown it all with Berocca because I feel like I need all that B and C vitamins too (plus the immunosuppresants were all bitter pills). 

I may die young but I now live old person's life. Just to be able to walk out of the house to work is the first achievement of my daily life. And my Rheumatologist said this is mild MCTD. I wonder how it will feel if it got worse and I need to take higher doses of those.

I think the pills did nothing to improve the workings of my limbs. It just got better in the day because I moved about. The purpose of the pills are to slow down my own antibody that decided to attack my connective tissues. I began taking it in March 2019. The fact that my lung got better means that it works on me because it stop/slow down the attacks on the lung (why lung? because it has connective tissue. everything in our body is). As for my limbs, I think I need less time to move about now but I also read that the damaged cells can no longer be replaced. What I am doing now is trying to build up muscles by weekly swimming and dumb bell workout. I also watch my food and lost weight to reduce the pressure on my limbs.

I think the real challenge to this is the fact that I do not look sick at all. I love it and hate it. I love it because I don't have to explain to anyone. But I hate it when it gets tough and I feel the urge to ask for help but I don't know how to explain. In the end, I just bear with it quietly although I can't know for how much longer. Appearance wise, I look better than the 20 years that anyone know me. I actually look my best when I was a baby but nobody knows that!

Now, people may say I lost weight because of MCTD. It's true and false. It's true that i need to lose weight to help lessen my burden with MCTD but it need work. It didn't happen just like that due to MCTD. In fact, the pills were steroids which made my appetite grow. I (mostly) resisted the urge to eat unhealthy stuffs. I eat food that I think will be good for my overall specific condition. It also took a whole lot of willpower to move my body to do any form of workouts at all because its permanently sore and painful. But when people ask, I will churn out all the healthy tips and left out my struggles. And I love churning out those tips (only when it was asked) because if those people didn't have what I have they will have a so much better life following my tips.

And so that's how my life is now. It gets better until bedtime and then it repeats. 

I think this is it as introduction.