Small Victories

 I recently got a call from a doctor working at the hospital that I had done my brain surgeries at. They wanted to know if I was interested to participate in a local research they were currently conducting and they were recruiting Moyamoya patients. I can only imagine how small the sample size would be since this disease is so rare. 

Anyway, they would like to study a specific gene, namely the RNF213 and to identify if this particular gene contributes to early onset stroke. And what is my contribution? Two small vials of my blood. I'm blessed enough not to have experienced major strokes as of now, but I have had a few TIAs aka mini strokes. So according to their hypothesis, I may have this gene. If this is proven, they would be able to use this knowledge to provide early medical intervention and treatment before a stroke occurs in the future.

As I was coming back from the hospital today, I felt this sense of pride and achievement. All I did was consent to my blood being taken as part of the study and allow my arm to be jabbed. And it only took one try! HURRAY! But it felt like something I COULD be proud of. And I am thankful for that. I've lamented in the past that I can never be a blood donor since I don't even have enough/proper blood flow for myself. But now, being able to donate just a little of my blood to a medical study, just filled me with gratitude that I can still contribute to society in small ways.

It's the Small Victories.  

These are my small victories that I can relish while I live with this chronic illness. It's a reminder to seek out and be aware of the little things I can do to make life meaningful to me and to others around me. 

This is definitely a memory I would like to look back at with joy and contentment. 

yet another...

 I was hospitalized two weeks ago as I had difficulty breathing. It's not Covid-19. Something I am thankful for. I was subjected to MANY tests. I was poked with lots of needles throughout my stay as they tried to figure out what was wrong. They concluded it was a lung infection - what exactly, they couldn't not pinpoint. 

What they discovered in their extensive tests and prodding was that I have Grave's Disease. What I thought I had for two years was hyperthyroidism. But actually I have Grave's Disease which is an autoimmune disease. And it can cause hyperthyroidism. The doctors fear that this has been overlooked and untreated Grave's disease can cause a lot of further complications. 

To be honest, I have put this diagnosis aside as I was not ready to pay attention to it or to accept it. It's just been so draining. It's yet another diagnosis to add on to my already very sickly body. I just need time to process it and to come to terms with it, but it just feels like it's another huge hurdle that I need to overcome. 

I've been feeling depressed but trying to function as normally as I can. And to some extent, I know I am putting up a face... a facade to keep myself sane. But I know my feelings of lowness and demotivation needs to be taken notice of, and I need to care for myself amidst my busy-ness and lack of sleep. 

I feel God has been using different ways to show that He is there for me. A dear, dear friend in the US messaged me when I was in tears just to check in with me and I started sharing with her my sadness and she held that space for me. Also, this popped up on social media that is giving me some hope and I'd like to leave it here as a reminder to myself and for others who are struggling:

Privilege of being healthy

 I found myself reacting to a friend's post on social media a few days ago. She talked about how people make excuses for not being able to buy a house, quoting that a teenager who worked in a fast food restaurant for several years, was able to purchase a house without anyone's help. I sat with my reaction towards her post and I noticed frustration emerging. and I found myself saying that it is a privilege to be able to save the kind of money needed to buy a house.

Recently, I was hospitalized for quite a few days due to a lung infection, which caused shortness of breath and I required the aid of oxygen mask. Thank God it wasn't Covid-19 but the doctors couldn't pinpoint what the infection really was... anyway, thankfully I was in a government hospital. Even then, the bill totaled to nearly RM1k, with all the treatments and diagnostic procedures i was put through. And more and more I realize that illnesses can hit anyone and everyone, but not everyone has the privilege to be able to seek medical help. I would consider myself one of the lucky ones but whose bank account is being drained by the many medical conditions I have. I will be going for a CT scan next week for my Moyamoya follow-up and that alone will cost me to a tune of about RM2k+ because my surgeon is now in private practice. 

(Edit: After going for the CT Scan, to my horror, the bill presented to me was close to RM6000)

Being physically healthy is a privilege. Being able to function as per normal, to live "normal" lives, to do what "normal" people do is a privilege. I think we always assume life is to go on an upward direction (e.g. get a job, find a partner, buy a house, buy a car or two, invest, etc) but it doesn't always work that way. Life can throw you into a loop. Sometimes it feels like life is passing me by, and I'm trying to jump into that same wagon but it literally leaves me breathless trying to catch up.   

I've been reading a book and it talked about a poem called, "Welcome to Holland" by Emily Perl Kingsley. 

And it has resonated very much with me. There are so many things I want to do and experience but I find myself being pushed/redirected to do something else or I am told I can no longer do what I dream... It's about finding meaning and appreciating the scenery even though that was not where I wanted to go.. 

Anyway, this is my current process...

Health During the Movement Control Order (MCO)

It's been a year since I have posted an update about how life has been.

The year 2020 has been quite a rollercoaster ride. We started the year realizing a virus was spreading, infecting many people in many countries, turning it from an epidemic to a worldwide pandemic. To try to flatten the infection curve, Malaysia has been on a national lockdown since March.

How is it like to have Moyamoya disease and keep safe from this virus, which is now known as Covid-19?
For one thing, I have been avoiding hospitals as they are hotspots for infection due to the very nature of hospitals - sick people go there. People who suspect they are ill with the virus will go to the hospital for testing. And it has been discovered that people who have existing conditions are more susceptible to it, and death rates are higher for people with existing illnesses.

There has been a heatwave as well, and I don't do well with heat - it triggers my migraines. Thankfully with the lockdown, staying home is enforced. And it gives me opportunities to sleep my migraines off. With it being a lockdown, I am also the caregiver of the family and am the only one who can go out to buy provisions/groceries. And wearing a mask when I go out constricts my airflow. Also, I sweat buckets due to the heat, and my face being closed up, and I get dehydrated. There have been international reports of people exerting themselves while wearing a mask, and they drop dead due to lack of oxygen.

I realize there has been many news that can be rather scary for someone having a medical condition like Moyamoya. But I have been able to regulate my emotions knowing that I just need to be careful and stay safe, and not take these news too personally. I ensure I have a bottle of water if I need to go out so I can replenish the water in my system, keeping hydrated.

This is definitely a very novel experience - going through a pandemic. I hope that this only happens once in my lifetime. I pray for safety for everyone, especially those who are already vulnerable physically.

no time to be sick

I've been under a lot of stress for the past month or so. feeling like a mobilizer in many aspects of my life. The strain is starting to seep into me and affecting my head and body. My severe migraines have been returning, my aches and pains are back, and my chest pains have been more excruciating.

I need to slow down, but i'm just swamped with responsibilities. I really need to learn to say no. Already i've been saying no, but somehow I still end up with many things that occupy my time. 

Things have not been easy at home. But sometimes I feel I can't allow myself to rest or to just ignore the problems... it's like i have to put aside the fact that my body is screaming for restoration.. because i have to look into resolving family issues.

i'm tired

living life while anticipating death

In just a blink of an eye, we are now in the month of April 2019. I've noticed my thoughts of death and dying since last year. I really don't know how much time is allotted me and I realize that's not up to me to decide or plan.

However, I discovered a lesson in rather paradox perspective. As I anticipate death, I acknowledge that time is limited. I do feel a sense of urgency. Sometimes I wonder if this sense of urgency may be causing more stress than I need. How shall I balance motivation, drive and anxiety?

Due to my sense of limited time, I want to live a fruitful life. I life that I won't regret. Do I want to leave a legacy? Do I want to impact lives? And I do want to have deep, meaningful conversations and relationships.

Sometimes, I feel like I want to live my life as if today was my last, and that I will die tomorrow. Do I dare to live that life I want? My tomorrows may or may not be limited. Are there things that are holding me back? I realize i'm more adventurous now due to this mindset of wanting to live life to the full.

What are my values that I want to live by?

When grieving will continue

This post is late, but in August I was diagnosed with Hyperthyroidism (it runs in my family). Although my family and I had suspected it before the blood test, receiving the formal diagnosis was hard for me. It was yet another health issue that I had to deal with. Again, this identity as a sick person kept coming to me. Grief came over me. My family didn't understand why I was upset but I allowed myself to cry.

And to fast forward to recent days, I was informed by the neurosurgeon that my Moyamoya vessels are still evident in my MRA which suggests that I am still not safe from suffering any stroke attacks. Also, he mentioned that I have to give up my dreams of learning scuba diving, bungee jumping and sky-diving. I know that my condition has no cure and it is progressive but it was another painful period of grief. 

After the hospital appointment, I just sat in my car and cried. In my head, I thought of just going home and crawling into bed, not wanting to do anything. But I had a muaythai trial class that day.. after some reflection, I felt that life still goes on and I can try to live it meaningfully while being careful not to strain myself.

What came to me was that my grieving process will come up time and again as my disease progresses. And I will continue to experience losses and I will grieve. I am ready for that? maybe not, but I have learnt not to dwell on it. Do I wish things were different - that I was fit and healthy. Sure I do, but again wanting to live life now the best I can and be the person I want to be. I feel I am more authentic and real now, without hiding my emotions and pretending that things are great when they aren't. But being able to accept my struggles and continue doing things that are important to me.