Hi, it's Maiqui.

Last August 17, I was fortunate enough to have been able to travel again to… SINGAPORE!

When my condition started to worsen in July, several people suggested that we also consult with a doctor in Singapore as they have more advanced studies and treatments for rare diseases like mine. We all agreed as a family that it would be worth going to as we might gain more insights on what was happening to me. It was important for us to align with my doctors in Manila on our plans. They wholeheartedly agreed as well and told us to just keep them updated on any news.

So we met with the doctor and well, there was good news…and there was bad news. Which one do you want to hear first?

I guess we can get the elephant in the room out of the way.

Here’s the bad news: My autoimmune disease is both very serious and possibly life-threatening. Apparently, Dermatomyositis is quite rare then you add on my being positive for the Anti-MDA5 antibodies, and it becomes even rarer. Lucky me! I always knew it was serious (especially after Googling it the first time) but to hear it from the doctor, it’s like reality kicked in that this is really bad.

The reason for it being possibly life-threatening is mainly because the Anti-MDA5 puts me more at risk of developing Rapidly Progressive Interstitial Lung Disease (RPILD). If you look up the statistics on this disease, they are not great.

I felt sad after because it made me realize that I would be living with the constant fear that something bad would happen and not knowing how long of a life I’ll get to have. The uncertainty scared me. But then again, isn’t life uncertain for everyone? Maybe what I have now is just making me more aware, more prepared and more grateful for the everyday. That’s how I’m choosing to see it instead.

I hope that wasn’t too heavy to read but I promise you, the good news is coming!

Despite the doctor’s concerns and worries about my condition, the good news is that we caught it early and that I am young and able to still walk, talk, and stay active. As I said in my first blog post, the timing was crucial. It’s really important to have yourself checked if you feel that something is off and to always communicate to your doctors, or even your family and friends on anything.

Even more good news – she said that my doctors in Manila did such intensive work with all the tests and scans and that the Rituximab treatment they made me do last month was the right decision as well. Again, I’m so grateful to my doctors for acting fast and being proactive.

But she felt that given the high risks, the treatment might not be fast enough as the Rituximab may take a few months to take effect. She then gave me a new set of medicines to take that would be able to work faster and make me feel better sooner.

I started taking the new medicines on August 18 and then had blood tests done on August 22. Even if it was only a few days on the medicines, my blood test results improved significantly. Another good news! It shows that the treatments are working. We just have to monitor and see if I keep improving over time.

In spite of the mixed news from the doctor, I honestly had a really great time in Singapore. It was good to be in a different environment and be able to spend time with family and friends. I have a lot more fun stories and learnings from my Singapore trip that I plan to share in future posts.

This last week has also reminded me of how blessed I am to have such supportive parents and great friends who look after me.

From pushing my wheelchair in the airport to helping me carry my bags and even walking at the same pace as me while going around the city – these little things mean so much to me. It’s hard not to still feel grateful for the life I have when I feel so loved and supported.

A big part of what also keeps me hopeful is my faith. The Gospel in the Sunday mass for that week was about a woman who persevered because of her faith. I felt like God was sending me a message in some way to keep believing and to not give up. I needed to hear that.

I still cry and feel sad at times but I choose to just keep focusing on the journey forward instead. The work continues. I am home now and will end this post with the most important news, I am feeling much better and stronger!

Till the next update! –

Then Jesus said to her in reply, “O woman, great is your faith! Let it be done for you as you wish.” And the woman’s daughter was healed from that hour.

Matthew 15:28