Tag: #singaporediaries

• Singapore diaries #2: A lot to celebrate!

  I know my posts are generally optimistic and hopeful but it’s so nice to finally write something filled with GOOD NEWS for a change. I came back home from another medical trip to Singapore with a happy heart (and tummy) because there’s A LOT to celebrate!

  

  Since my last check-up was a month ago, I was due to head back to Singapore to see my doctor and do my routine tests. I was excited about another trip but also nervous because of what happened the last time. If you haven’t read it, I shared the good and bad news that I learned here.

  On the day of my check-up, I had to do my usual blood tests – which consisted of a Complete Blood Count (CBC), Kidney Profile, Liver Profile, Bone/Joint Profile, and tested for other markers such as Glucose, ESR, CK, Ferritin, and C-reactive prot. As much as I want to explain them all, I wouldn’t be able to do that properly so Google or better yet a doctor would be your best option.

  One of the markers that my doctor wanted to monitor more on was the Ferritin. Autoimmune diseases such as mine (Dermatomyositis) are often associated with high ferritin levels due to inflammation. Basically, the higher the number, the worse it is.

  When I did the blood test in July, my results were high and above the normal range. As I began my medications and treatments, the number started to improve.

  Ferritin Reference Range: 4.63 – 204.00 (PH) and 10 – 291 (SG)

  • July 4 (PH) – 834.42
  • August 16 (PH) – 765.81
  • August 22 (SG) – 422
  • September 3 (PH) – 317.75
  • September 21 (SG) – 136

  

  For the first time, my ferritin level was now within the normal range! Plus all my other blood test results were very good too. What a relief! At least we know that all the treatments have been working and we just need to keep monitoring it for the next few months.

  Because of this, my doctor also decided to lower my steroid dosage to slowly start weaning off it. I was even happier to hear this because of all the negative side effects steroids bring such as swelling of my face a.k.a. moon face.

  

  It may not cause physical pain but it has been affecting my self-esteem significantly. I’m always conscious around people and I don’t like seeing myself in photos now. I keep my face mask on for protection but it’s also a good excuse to hide the swelling. I’m learning to deal with it though because I know that it will go away once I stop the steroids. Hopefully, I’ll continue to be okay on the lower dose so that I can be off it soon.

  Hearing all the good news was a great way to start my Singapore trip. It allowed me to relax and have fun with my friends and Robi for the rest of the week especially since it was also his birthday.

  Sharing with you all the activities that I was able to do:

  

  

  

  Lastly, a trip to Singapore is not complete without trying all the different cuisines they have to offer – from Hainanese chicken to my favorite hotpot and crabs to my new love for Indian food and the most delicious wagyu rice bowl. My tummy was very, very happy.

  

  Despite it having been a medical trip, it was so nice to feel like I was on a semi-vacation for a change. I honestly felt good most of the trip and I even forgot about my condition sometimes. But I also need to remind myself to take it easy and pace myself to make sure I don’t relapse or get sick.

  These little wins mean even more me to now and I’m so grateful to continue to be surrounded by amazing people. I definitely lucked out with my friends. Thirty years of friendship and counting!

  

  And of course, the birthday boy himself, Robi. This trip was made even more special because he was able to join me despite his busy schedule. Can’t thank him enough for all that he has done and all that he continues to do for me. All he wanted for his birthday was for me to get better and I’m so glad God granted us his birthday wish.

  

  There truly was a lot to celebrate this week! Thank you, Lord, for these blessings and I continue to pray that the good news continues.

  A happy Sunday indeed! –

  October 1, 2023

  #autoimmunejourney, #singaporediaries, #travels

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• Singapore diaries #1: the good and the bad news.

  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

  August 27, 2023

  #autoimmunejourney, #singaporediaries, #travels, chronic illness, health, life

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