I woke up this rainy Sunday morning surprised to find out from friends and relatives that my autoimmune story was part of a Sunday homily mass by Fr. Jason Laguerta of the Sta. Maria Goretti Parish, Manila.
I included the video clip of the homily above but you may start at the 07:20 mark for easier reference.
For context, the article he mentioned in the homily was from a recent interview made by my fiancé, Robi, to the press on my condition and the status of our wedding plans. I am touched that our story inspired him to include it in a very meaningful homily. I feel like I was meant to hear this today and I think it would be helpful to share it as well to others.
In the video clip, I added the part where he speaks about the late veteran journalist and highly respected broadcaster, Mike Enriquez. He was also battling his own sickness for years before he passed – what Fr. Jason calls his cross. The part that I related to the most was how he dealt with his sickness because it’s also what helped me endure and keep fighting. He said:
“Kailangan mo tanggapin ang sakit mo kasi kung hindi, mas lalo kang mahihirapan”
Mike Enriquez
Acceptance is key. When I learned that I may have an autoimmune disease, I didn’t even think to deny this possibility. I accepted it fully and focused on figuring out what it is and finding the solution instead. I still prayed, of course, that it wouldn’t be the case but it prepared me to face the diagnosis when it did arrive. If I chose to deny it then maybe I would’ve taken my time and ended up in a worse situation.
Like Robi, it is normal to question why we go through these kinds of suffering. Why me? Why us? Why now? Isn’t God supposed to bring us blessings and not sufferings?
As shared by Fr. Jason in the homily, God has three answers for us:
As humans, part of our journey is suffering. We have to understand that the reality of suffering is part of our lives as contingent human beings. We are limited, we are mortals, and we are vulnerable. We have to accept that part of life is suffering.
Suffering is a requisite to greatness. Our crosses or adversities in life can also lead us to something better. Kasama ng tagumpay ang paghihirap. We must endure the pain and hardships to obtain success.
God is bigger than any of our human sufferings. Our cross is a necessary part of our journey because God will show us how he will conquer any death, cross, and suffering to give us hope and eternal life. We have to go beyond the suffering and look at the bigger picture that God has a plan for us. You have to believe, trust and surrender.
Each of us has our own story and our own crosses to bear. There are different ways of dealing with it but my faith and acceptance are what’s helping me deal with mine.
I honestly got emotional and cried after hearing this homily. Even if I am better and stronger, I am still going through my crosses now and it can be tiring and painful at times.
But like Fr. Jason said, you must believe, trust and surrender. I truly believe that God has a bigger plan for me with all this. Maybe it’s this blog, something more, or something so amazing that I never would’ve imagined.
Hope you had a blessed Sunday! –
“If anyone wishes to come after Me, he must deny himself, and take up his cross and follow Me. For whoever wishes to save his life will lose it; but whoever loses his life for My sake will find it.”
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 youngand 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.
Before I continue sharing my journey, I just want to thank everyone who read and shared my first post about what happened to me. I did not expect it to gain as much traction as it did but the response has been overwhelmingly amazing!
Many people reached out to me sharing their own stories of living with an autoimmune disease and how they overcame it. Others were experiencing similar symptoms and asked me for some tips and advice on what to do. It was comforting to speak to those who went through it too and to be able to pay it forward by helping others.
I am also grateful that there is now more awareness of autoimmune diseases as it wasn’t as known or as common before. After speaking to different people though, I realized that there are many that have some form of the disease too. There were stories that were more heartbreaking than mine yet they still continue to fight.
I think this is a good time to remind everyone to be kind. Diseases like mine are in a way invisible to the eye. We don’t always see what people are going through.
As the saying goes:
I’m glad that my story has ignited more conversations about autoimmune diseases and health, in general. That was an unexpected goal I didn’t think I would be able to reach this soon.
So THANK YOU again for all the support, well wishes, and prayers and for keeping me motivated to continue on in this journey to recovery!
I have always been a private person and tend to keep my thoughts to myself but with everything that has happened to me lately, I felt like this is a story worth sharing.
So, what happened? I got sick.
On July 14, 2023, I was diagnosed with a rare autoimmune disease called Dermatomyositis (with Anti-MDA5 antibodies) after almost three months of doing all kinds of medical tests, scans and even a heart, pulmonary and muscle exam. It sounds very technical but to explain it in simpler terms:
Dermatomyositis is a rare autoimmune disease that causes muscle weakness, inflammation, and a skin rash.
My immune system is basically attacking the healthy cells of my organs and tissues by mistake. However, with the Anti-MDA5 antibodies, I also have a high risk of developing Interstitial Lung Disease (ILD), which causes scarring in the lungs. The cause of an autoimmune disease is unknown but genes may play a part and it can also be triggered by a virus, environmental factors and stress. Sadly, there is no long-term cure for autoimmune diseases but they can be managed and treated.
It has been an excruciating journey for me so far that all started back in April 2023 with skin rashes and dryness on my fingers and hands. I thought my hands were just dry because I came from Japan and it was cold and windy but it wouldn’t go away and started to become more difficult and painful to manage. Aside from the rash, I started feeling something in my shoulder and wrist joints to the point that I was having a hard time slicing my own food, opening doors and bottles and lifting things. I was hoping it was just because of my back issue due to bad posture but deep down, I knew something was off.
I finally went to a derma to have it checked especially since my fingers started swelling along with pain developing in my lower joints. At first, we thought it was some form of eczema or dermatitis but my derma took the extra precaution and asked me if I was experiencing any joint issues. I said, yes. She then told me to take an ANA (Antinuclear Antibody) Test just to clear myself from any potential risk of an autoimmune disease.
I cannot thank Dr. Mary Anne Amon of the WellSkin Clinical Skincare/Derma360 enough for making this call because I may have found out too late or even never known if not for her. The timing was crucial.
Finding a rheumatologist doctor was the next step and thankfully, a relative referred me to a great one who was able to accommodate me right away. I had to take several blood tests including the ANA test and those to rule out Lupus and Rheumatoid Arthritis.
Tests came back:
POSITIVE at 1:40 for ANA
NEGATIVE for Lupus
NEGATIVE for Rheumatoid Arthritis.
Ruled out two diseases but there are more than 80 kinds of autoimmune diseases so tests continued.
What made it hard was also not knowing what it was and the long wait it took before getting a diagnosis. The crucial test that determined it took three weeks to come out since they had to send it abroad to get the results. Since I already had symptoms, my doctor placed me on oral steroids to manage the pain. It helped a lot.
Before the steroids, there were days when I couldn’t even get out of bed because of the stiffness, pain and fatigue. I kept missing work because I just couldn’t move and wanted to sleep all day. It even came to a point that I was still feeling the pain while I was asleep. I just kept trying to stay strong and continue my regular activities as much as I could but there were bad moments especially when I realized I couldn’t put on pants and even a bra on my own anymore. Showering was always tough because my finger rashes would be painful from washing my hair. Bending down or sitting on the floor was not an option for me because I wouldn’t be able to get up.
I honestly thought I was getting better at managing it with the steroids as I was even lucky enough to still travel to London in June. Of course, I wasn’t the same and I had to be careful and make sure I rested a lot but I did come home feeling much more in control of my body again and even started going to work and going out with friends. In a span of one week, everything changed. I document my symptoms daily and this is what happened:
June 27: Body feels normal overall. Joints aren’t painful and can do more. Fatigueonly happens when going up and down stairs. Some random chest tightness.
July 4:Feverish and chest tightness with slight bursts of cough. Body stiffness and weakness with fast heart beat even when laying down.
July 8: Fever up to 38 degrees with headaches and body aches. Chest tightness is still there especially in certain angles with chest cough. Fatigue and losing weight.
July 13:Constant chest coughs, can’t talk or move too long. Get so tired and fatigued. Headaches and shortness of breath.
I guess it didn’t help my condition that the results finally came out on July 4 and I decided to Google what it meant. Bad idea. It kept showing me all kinds of scary articles that had words like mortality, which is not always the case. Lesson learned: DO NOT GOOGLE. Thankfully, my doctor responded right away to ease my anxieties and gave me more tests to do as it showed that it is also affecting my lungs.
Unfortunately, when I did the pulmonary function exam, my lungs already showed signs of being restrictive as I had difficulty inhaling. Met with my pulmonologist after and together with my rheumatologist, they made the call on my diagnosis and decided to place me on treatment right away before the lungs get any worse. Again, timing and great proactive doctors are crucial.
And so I ended up in the hospital, with my three-day stay turning into one week instead. The treatment consisted of doing an IV treatment with a high dosage of steroids for three days then my first dose of a medicine called Rituximab to suppress my immune system. Because I got a fever and needed clearance from any infection, it took longer than expected. My face would swell up too because of the steroids and it was tough seeing how different I looked.
I am grateful to all the people who stayed and took care of me at the hospital especially my fiancé, Robi, my family and friends who visited daily, and all the outpouring of messages, prayers, love and support from other friends and relatives including people who reached out on social media. It’s really what kept me going.
I am now home recovering and waiting on my next dosage of Rituximab. My overall body is better but the main issue is still my lungs that is also causing my heart rate to be higher than normal. Dealing with palpitations while sitting and laying down is one of the most uncomfortable things ever. But I try not to let it get to me and just continue to improve everyday with my pulmo rehab program, breathing exercises, I slowly walk and do more activities, meditate and just relax as to not trigger anything.
I also learned from others how diet and the food I eat can help manage inflammation so I’ve started eating healthier such as gluten-free, dairy-free and more fruits, vegetables and organic products. No more processed, canned, junk or fast food and avoiding meats for now. It’s a bit of a difficult balance because I’ve also lost so much weight in a span of a few weeks. From my usual 54 to 55kg, I am down to about 50kg. Thankfully, there are so many good healthy options plus I have the sweetest friends and family who would send me food often.
So here’s where my story ends for now. The journey to recovery will still be awhile as this only takes full effect after a few months and there will still be many tests, check-ups and medicines to deal with. I acknowledge it is a blessing to even have access to medical resources and great doctors to help me get through this so I won’t take anything for granted. If you’d like to stick around for it, I’ll most likely update this blog to also document my own personal progress.
There are good days but there are still bad days especially knowing that I can’t just wake up in the morning and go out to do whatever I want, see friends and eat out, go to work, make travel plans or even exercise again. I have always kept a relatively healthy and active lifestyle as I never smoked, I rarely drink alcohol, I don’t drink coffee, soda, juice or even eat too much junk and fast food. I used to play basketball, tennis and do yoga and pilates everyday. Now, I can’t even breathe properly, bend down or sit on the floor to stretch. It hurts to see how things changed instantly.
BUT, I am hopeful. I know this is only temporary. It will be one of the hardest things I will ever have to do but I will work on it one day at a time. I am at my most vulnerable now but I will come out of this stronger and better than ever.
Thanks for reading! –
Just want to say an extra thank you to the following people:
To Robi, who has been my rock and strength all throughout even when I know how hard and tiring it must be at times.
To my family, who have been taking care of me daily and accompanying and helping me with all the proper doctors, treatments, food, and other needs.
To my close friends and even those I haven’t spoken to in a while who reached out and sent food and gifts to help me recover and keep me going.
To my boss and team who have been so understanding about the situation and allowing me this time to focus on my health.
To a fellow autoimmune warrior, Daniela Medalla, whose super amazing and inspiring autoimmune journey kept me hopeful that I too can get out of this. She inspired me to share my story as maybe one day, I can do the same to someone as she did for me. Her story is also worth a read here: https://danielamedalla.com/
To all my amazing doctors for being proactive with everything and calmly helping me deal with this condition; as well as my friends who are doctors that helped me get through tough times.
To God, I know You are with me every step of the way and with You, nothing is impossible.
Hi, it's Maiqui. 