I Live to Inspire

 For quite a while now, especially whenever depression gets the control over me, I have been asking the universe, why am I still here? Why did I wake up again after that almost a month of slumber after my operation in 2017? Why do I still live, if living means being not able to do stuff I used to do before? It has always been my question since I woke up from coma in 2017. My therapists and nurses all kept on telling me, "you are still here because you have a mission." But what is that? I can't seem to find the reason no matter how hard I search...

Until today when I had a chat with a distant relative in Australia in connection to my Facebook post last Thursday. 

Last Thursday was literally Throwback Thursday for me. I was cleaning my external hard drive and saw photos from 2017 that didn't make it online. Photos after I woke up. Because I was still chained to lots of cables and was wearing hospital dress, I opted not to share it before. One, to not shock my family further because they had enough shock the moment I didn't wake up after the operation and two, I felt so ugly there. But last Thursday was different. In my mind, I said "so what if I am ugly on these pictures, I wanted them to see how I fought the battle." I kept on posting about my sickness, but I am not sure if they really know how the battle really looked like. So just to give people an idea what and how I looked like, I posted the 3 photos I had. It was for me just some sort of reminiscing, and thanking all my prayer warriors around the world because of them, the One Above gave me another life. It was literally "just another Facebook post" for me. 

Little did I know, it was more for somebody I know dearly.

Ate is currently facing her own battles. She did not mention what it is, but she has been doubting herself and her strength and the grace of the Lord. She has a son and he's still small, hence all these anxieties. She said, in the middle of her anxiety attack, my post showed up on her timeline as the first one. Then she pulled herself back and determined to fight. She told herself, "Cy did it. She has been battling a lot since a little girl and she continues to win each fight. So what do I have for an excuse to give up now? If she made it, so can I." She told me that I am a living testimony of how vast God's love is for us, that even the impossible can still be possible in God's grace.

Her words opened my mind why I am still here. 

I am here to continue to inspire. There are a lot out there who are at the verge of giving up. And the reason why I am given a second life is to remind these people that God's grace is endless. That God answers prayers. That nothing is impossible to Him if we only fervently pray. That we should not doubt Him. He is there. We may not feel His presence, but He is at work.

Hence, from now on, I can also easily fight my depression by telling myself, 

I am here to fight until the end. I will not just sit and let the enemy destroy me. I will make sure I am giving it a good fight. I'd rather die in the battlefield fighting until the end, until my last breath. 

And you who's reading this, should think the same way too! Life is beautiful! :)  

Was Bisher Geschah

I just imported all my blog posts from Wordpress back here, back in my old home. I dunno, being in Wordpress was not bad, but I think, here is my home. There are some posts that were not imported, because of formatting maybe, I will repair those posts in the coming days. For now, my personal blogs at Wordpress are no longer visible to the world, because the posts are here anyway.

You might be asking, what have I done in the past years. My official last post here was in 2013 saying I am officially a student. Well my WP posts may help you find the answers where I have been, but they are quite a lot, so here's a summary of what I've done in the past until today:

• 2013 - as I posted before, I was officially a student again. It was for winter semester here, I started attending DSH Vorbereitungskurs, it is a German language course that foreign students need to pass before they can officially attend the actual university program. I passed the DSH exam with DSH 2 grade, just enough to get started in the program of my choice.
• Summer semester of 2014, I had to take a semester leave. Why? I had my scoliosis implant in April 2014. I was in the hospital for like 7 days, the healing took me around 3 months before I got used to the new feeling at my back. My implant is from thoracic down to lumbar (Th4 to L4). I am doing good so far with my scoliosis, quite limited with movement, but no more pain during winter.
• Winter semester of 2014/15, I am back in the university. My average from UST was below the accepted average to start in Master program, plus I am lacking credit points, so yes, I started back in bachelor program. It was not bad at all since the medium of instruction is in German, so I got a chance to learn German words in chemistry and relearn all that I had learned back in UST in German. I also get to train my German technical writing. It's interesting to know too, that here in Germany, we had to finish a seminar about laboratory safety and waste management for like 2 months, then take the exam and pass it. Only those who passed the exam are allowed to enter the laboratory and work. I passed the exam in 1 take. I am proud to say that we are only 3 foreign students who passed it in one take (2 others are Japanese or Vietnamese boy and an Indian girl who grew up in Germany). Those who failed are given a second chance to take the exam and if they still fail, then they have to wait for another year to re-attend the seminar and take the exam again (the seminar is only once a year).
• However, by February 2015, shortly before exam days, I fell sick. It was flu but took me around 2 or 3 weeks before I was back on my feet. Hence, I had to withdraw from all exams, I was not prepared. It means, not moving forward to next lectures if the exam was a pre-requisite. Luckily, the exam for General Chemistry was not a pre-requisite for the next semester, I can attend the next lecture as normal. I then started with laboratory works during semester break (yes! no semester break for me since I took physics lab during the semester and decided to take chemistry lab during semester break).  However, I felt I was not yet 100% fit. I almost collapsed during an experiment. My chinese friend asked me if maybe, I was pregnant. I didn't think about it being possible. I went  to our family doctor and he just advised, I needed a rest. If I drop out of laboratory class, that means waiting another year, general chem laboratory class is a pre-requisite to get into the following semester's laboratory classes (analytical chem lab). It felt like my dreams were shattered. I was so happy being back in chemistry. I am really challenged, esp.my colleagues are young and fresh from Gymnasium,and I had my bachelor diploma 10 years ago. I love challenges. I love the pressure to solve calculus problems as fast as I can before somebody in the class solve it. I enjoy attending lectures and seminars and solve chemistry problems again. Then, I was told I need a rest. I am afraid to change my circle of friends, hence I went to my lab professor and said am dropping out of the program completely. He was sad, asked that maybe I just need another semester break, I said I already had one before WS and I am not getting younger, I cannot wait another year to start all over (I was already 31 that time!). I dropped out of the chemistry program and shifted to German studies with minor in Philosophy and History of Science (I just can't leave science behind!).
• Before the semester break ends, since I already dropped out of chemistry program, we had a vacation at Baltic Sea, in the island of Usedom. It is my husband's birthplace. We spent a week there. And it was also perfect timing that the result for my naturalization came and I renounced my Filipino citizenship the time we were up north (Usedom is around 3 or 4 hours drive to Berlin). Renunciation was the final step before they can release my certificate and grant me my new citizenship. I am officially a German since April 1st 2015.
• Summer semester starts at around April, so I am out of chemistry program already. Another colleague from chemistry also shifted to German studies. Another one I saw in law school. So our original class in chemistry was halved after a semester. Some failed the safety exam hence were forced to drop out earlier, and others were like me, the pressure and workload in chemistry was just too much and decided to take a different path the following semester. My new program was indeed more relaxed. I registered for lecture in modern German literature, introduction to philosophy, seminar for modern German literature, seminar for linguistics, philosophy seminar, latin course and I still have lots of time for my husband. I really enjoyed the program too, since I love reading. The challenge is different, it has nothing to do with numbers anymore, but it challenged me to think, to establish my own thesis/ philosophy. It was interesting and fun!
• June 2015, again just few more weeks to exam days, I fell sick. This time, it was not a normal flu. I was rushed in the hospital for excruciating pain on my left breast. The pain is like being stabbed with a knife, I can feel it till my back. I thought it was my scoliosis implant, that maybe I did something wrong. I remember carrying lots of books back home that I borrowed from the library to work on my review notes for the upcoming exams. It turned out, my aorta dissected and at the same time, an aortic aneurysm is growing. I had an emergency operation then to have a stent implant to close the dissection and stop the growth of the aneurysm. That operation meant giving up university all together, because we found out that it won't be the first of the many operations I have to go through.
• December 2015 I had another operation, again for stent implant. My aorta dissected further, hence they needed to extend the stent, and at the same time I had this "Schaufenster Syndrom", I have difficulty with my legs after standing for some minutes, so they also needed to put a stent at the artery at my right leg.
• February 2016, I had a talk with a geneticist and confirmed, I have Marfan syndrome. And if one mutation is not worse enough, it is a double mutation in my part, making my arteries more fragile than ever. Also early in 2016, after a check on my stent, my doc advised us to seek advice of RWTH Aachen Vascular Director regarding the repair of my aortic aneurysm.
• December 2016 we finally got an appointment at RWTH Aachen and the director and contact person for Marfan syndrome told me, that we need to repair the aneurysm as soon as possible. He gave us this prognosis: if not repaired, 80% chance that the aneurysm will burst in next 2 years and I only have 20 Minutes to get me in emergency operation (and from where we live, the hospital could never perform an emergency aortic aneurysm operation, I need to be flown and that means 30minutes travel time, hence, it would then be too late if it bursts), 20% that I will live more than 2 years with aneurysm. But if I get a planned operation, the chances can be reversed, i.e. 80% chances of living a longer life. That's why we chose to set an appointment for the next big operation.
• May 2017 was my planned TAAA repair operation. My aorta was replaced/ repaired and all arteries going to all internal organs and spine are repaired and sown. Imagine a tree and you decided to crochet around the main trunk and the branches. That was how the repair was done. And yes, my body gave up after 12 hours of operation. I did not wake up at the expected time. Then my lungs started to collapse. The doctors needed to put me in artificial coma. I was in coma for almost a month. My husband said, the doctors were giving up, the machine was the only thing that keeps me alive. They said, if I wake up, I am totally paralyzed and with complete memory loss. They scanned my brain and they are not happy with what they saw. They were asking for my husband's decision, my husband said to give me another week. I can remember waking up in June with no voice and very thirsty. I was on ventilator. I cannot move my body, not even my fingers. But I can remember that I was scheduled for operation, my only question upon waking up was, why does the calendar says "June 7". Then I saw my husband crying at my side, because I smiled at him. He said, my smile was a sign that I did not lose my memory. Doctors and nurses said I was a miracle. And I believe them.
• August 2017 I was released from the RWTH Aachen but I have to spend months in a rehabilitation clinic. Because I was in artificial coma for quite a while, I could not walk without a walker. I also fell in the hospital twice, despite walker, my knees just stop to cooperate suddenly. I stayed in rehabilitation clinic until November 2017.
• December 2018 we flew for vacation in the Philippines and I spent 3 months with my family again. After what happened to me in 2017, we thought it was good to see my family again, who I thought I would never see again.
• Also in December 2018 I started to work fulltime again, but from home. First client, I stayed for only about 4 months, the stress was too much.
• November 2019 I found another fulltime job but I had to quit early this year again, because I was again hospitalized in December (I had to spend my birthday and Christmas in the hospital!) due to sepsis and after that, I felt not really back 100%, hence I resigned in February 2020.
• March onwards, we all have same battle to face: CoViD-19. I stay at home most of the time because I am very prone to get it. After all that happened in 2017, my immune system is very weak.

That's what I have been through all these years. I am still battling with my health. There are days I can walk without walker, but there are moments I still need my walker, or at least a walking stick (but I prefer Nordic walking sticks because I have problem with balance). I still get tired easily. Life is totally not the same anymore like how it was before. I have to give up lots of my dreams. But then, my motto on this blog is "Life is beautiful", hence I am trying to fight the monster (I get depressive at times) each day and see the positive side on why I am still here, why am I given a second life. It is not easy. But then, don't all of us has cross to carry? Mine is my health. And I am slowly accepting it.

It's been a while since I was here. From now on, I will try to get this blog active once again. I just hope, I get the inspiration and motivation in the coming days.

Thank you for being patient and staying there despite the inactivity on this site.

Friends

I've been living for quite a long time now here in Germany. I've met different kinds of people, separated in a not-so-good ways with some of them. But despite all the bad experiences, there are a few who stayed and I am really thankful of them, for being there for me through my ups and downs. They may be only few, I can even count them with my fingers, but they are more than enough. They are the kind of people I am most comfortable to be with. I don't need to pretend just to be accepted. I can tell them everything that I think and feel and still rest assured that I am understood and accepted.

With them, it is fine to be crazy and they would just laugh and say "typical Anne".

Life Lessons

Today I feel grateful for the teachings my family and my school taught me. They shaped me to a person I am right now. My mom had always told me as a kid, that not because we have more food on the table and that I go to a private school, means we are rich. Surely, we are blessed, but what matters the most is my character as a person. So she taught me to choose friends who will accept me for who I am and not for what I have. As a kid, she let me play outside with our neighbors' kids and my cousins. We would run around, roll down the hill, play hide and seek, get mud on our faces. This way, my family taught us that we are equal. That none in our village is richer nor poorer. We are all rich because the whole place belongs to us. The vast field is not my uncle's field, but our field where we sit under the mango tree to eat its fruits, and fly our kites or play tag. (We just need to make sure his cows remain within the fences.) I was taught that money is not everything. That happiness does not depend on how much we have but how many friends we have. I was also taught that money does not grow on trees, one needs to work hard for it. So on schooldays I need to learn a lot and aim for high grades so I would be rewarded a wish. On school breaks, I learned to sell ice candies (flavored ice water), offer summer tutorials or babysitting so that I have few coins to buy something from the Sunday flea market. This way, I grew up being contented on what I have. Sure there are wants, especially during teenager days, but I learned since a kid that one can also be happy without these stuff.

At school we always have outreach programs where we spend a day with less-fortunate kids in our city. Through this program, I became sensitive to the needs of others. I learned not to want more, because I became aware that poverty is real. I learned to always thank the One Above for the blessings He bestow my family. It may not be much, but more than enough for us to survive each day and to cover our basic needs. My mind was opened to the fact though that we may be blessed by now but we are not sure of the future, hence it is important to learn how to save as well. Because of that, I learned to say no on wants and justify the immediate needs.

All these made me into a person I am now. My family taught me equality. They taught me to never judge other people's past nor their present because each person has his own daily battle. It is important to show respect so we would also be respected in return. My school taught me to always be grateful. I may only have few friends, but I am sure they are those who accepted me for who I am, for what I have and from what family I came from and I do not need more. They are enough and I am grateful to have found them in this lifetime.

Spring Feels

It feels so good to be surprised with these beautiful flowers. It makes me feel more thankful that I am able to experience another spring and eventually another summer.

Thankful for my husband who did not give up on me. Because of him, I am able to live more years and experience more seasons!

Unfinished Business

My fight against Marfan Syndrome continues. I had my open surgery last May, wherein my aorta in the tummy region was fixed with prosthetics to remove the aneurysm. The prosthetics run from my lower rib till just above my thigh. It left me a really big scar which would forever remind me of the battle I had been. But it was not just the scar that made this memorable. The operation was really complicated and I had hemmorrhage during the operation. It was comparable to slight stroke and if it was not bad enough, I also had pneumonia and some other internal organ problems. I was in coma for almost a month. My family and friends already readied themselves for the worst. It was difficult and based on their stories, they slowly lose their hope the longer I sleep. But I survived. I woke up after around 3 weeks and 4 days but without any memory. I saw my husband beside me crying but I did not reognize him, I was just staring at him and wondering who he is and why he's crying. After a week, he brought photos of us and put it on top of my table and the memories started to come back. I recognized him from our photo and I gave him a smile. He held my hand and began to cry once again. There were lots of questions after my memory was back. Why does the date says 7th of June? My operation was on 10th of May, what happened in between? I thought they were playing a joke with me. It was two weeks after when they, the nurses and my husband, got the courage to tell me what happened during the operation. I was shocked to learn the story myself and at the same time grateful that I have survived it all. My husband thanked me almost everyday that I did not give up, that I came back. And I reassure him everyday that I did that for him, that the reason I am still here is because I still want to create new memories with him. That there are dreams and plans we have talked in the past that I want to reach with him. And what happened just made our love for each other to grow bigger and we start to appreciate each other more. (Oh, how lucky am I to be his wife!)

But I guess there is a bigger thing that God wants me to accomplish. It is still unknown for now, but I am sure there is a bigger project for me in this lifetime. And I guess that mission has started because the hospital called and asked if they can use my case in one of the medicine lectures in the university, they will use the information on my symptoms as a Marfan patient, how to detect one, and what are the medical procedures I had to go through. That is definitely my first mission, to help the Marfan Syndrome research group and the future doctors and surgeons and to save further lives in the future.

My fight is not yet finished, I am still undergoing neurologic rehabilitation in order to be able to move around without any help again. I have been through a lot and I will keep on fighting despite the pain and even if it will take longer time, I will never give up no matter what. I will triumph over this rare disease. I will create beautiful memories with my husband, my family and friends. I will continue touching lives of strangers through Pinays in Germany blog and Facebook page and groups I am in so that when my time comes, a lot of people will remember me as "Anne, the selfless one."

The Day I Loved Once Again

It was in year 2009 when I decided to take the risk again and begin to love again. It was February in 2009 when my husband and I decided to try it, to know if we are meant for each other. Others did not believe we will make it. Some thinks it was just a fleeting moment, a spark that will die just as fast how it came. But we proved them wrong. We are now on the way to our 6th wedding anniversary, and we are already on our 8 years of relationship. And Darmstadt is sort of our first real date as a couple, but together with some friends. Sharing you some random photos taken in 2009 around Darmstadt.

[gallery ids="180,178,176,175,179,182,201,202,184,183,186,203,204" type="slideshow"]

They say it's no use to look back in the past, but I see it differently. When I look back on these old photos of the past, it makes me realize how beautiful my life is and how blessed I am to have experienced them and meet those people from the past.

The Memorable Past, The Beautiful Present and The Unknown Future

As mentioned few months back, this is already my nth blog. But it feels too empty. So I decided to challenge myself. In the next days, I will be posting photos of the past, photos that I posted in my old blog, which I deleted during my breakdown moments around two years ago. It will be a form of reminiscing how my life has been after all these years. What had changed and what stayed. Because life is not just about living up to the present, but also about reminiscing the past and looking forward to the future.

What I learned from Hape Kerkeling

"Ich bin dann mal weg" is for me one of the best books in this modern times. Honestly, I haven't read the book yet but I have seen the film. And it made me look forward to reading the book. But I just need to post it as soon as possible about how it affected me. It moved me in thousand ways. As you may have known, I am sick and each second of my life feels like my last. Unlike other terminal illness wherein you know how much time you still have here on earth, I don't know mine. This is aneurysm, and it is eating up my rational thinking. It pulls me down to the darkness of depression... but that film pulled me up! I now try to live up to the philosophy that was mentioned in the film: we all have our own Camino de Santiago. From the film, I have learned that we are all pilgrims of different art. The Way of St. James is not just one, we all tread our own pilgrim's path and it is called LIFE. It is up to us how to make this pilgrimage a memorable one, for me and for the people I meet along the way and share the journey with.

Believe in Yourself

When I was in fourth grade, I joined an art club just because my friend is there. My friend is really a talented one, she already paints that time, and I? I am a wannabe artist... up to this time. I thought if I join the club, I would learn the techniques as well and be like my friend. I had always admire her sketches and paintings. Little did I know, it was a club of real talented youth: everyone, except I, can at least draw, if not paint. But I never felt left out, though I belittled myself. The other members taught me their skills. The adviser treated me like just anybody else. I had fun, but I left the club after a year. It is because I thought to myself, "get real girl! You aren't an artist. You don't belong there."

Now the club adviser is also our art teacher. She asked me the following year why I left the club. I told her the truth, I don't think I belong. She asked me who told me that and I said, I just think so. She shook her head and said, "the club misses you. No one thought nor see you don't belong." And I think, she's one of the best teacher I ever had. She believed in me eventhough I don't believe in myself. She commissioned my friend to paint the walls of our new art room and she told me to help out. Even if I was no longer part of the club, they still considered me as one of them.

I still can't paint as good as my friend, who already has an atelier in the USA. But I am forever grateful to my gradeschool art teacher and the whole art club for showing me that I can, if I put my heart into it. For now, I just satisfy myself coloring these books that are currently in the market, just like the one in the picture which I colored from Johanna Basford's  Mein verzauberter Garten: Eine Schatzsuche (original title: Secret Garden) coloring book.

You may look like you don't fit in, but it doesn't matter. Just take what you can learn from it and continue to believe in yourself. Each of us is good at something. Just believe...

I Could Not Ask For More

Last weekend, I had my depression once again and this time told my husband we should file a divorce because it is too much for him and I want him happiness. He stared at me and said, "we'd talk about it when you're in normal state again." I insisted that I am in normal state, that I already thought of packing ny things up, and fly back to the Philippines and never come back again. Hat time, I felt like a burden for him because of ny sickness that I wanted him to search for his real happiness. His answer was simply, "but you are my happiness." And I just cried.

In this era, I guess finding a man like my husband is next to impossible. A man who stays firm to his words when he married you. A man who despite the challenges, would never ever give up on you. A man whoremains rational when you start to be irrational. A man who doesn't get mad when you are mad, instead tries to find a way to bring you to laughter despite the anger you are showing. A man who will not spoil you with material things, but will spoil you with tender, loving care and show you that unconditional love is true. A man who remains strong when you are at your weakest. A man who is willing to sacrifice himself, and his earthly desires just to make sure he gets to keep you for the rest of his life.

I am very thankful I found such a guy. Just like an old song says, "I have all what I've been waiting for, and I could not ask for more."

My Chaotic Mind: My Blog Comeback Story

Funny that I deleted my personal blog last year (cywussow.wordpress.com) out of frustration and depression. By the time that my health went down really fast, that I had to give up my studies and spend most of my days in the hospital, I thought "this is the end, I have to slowly shut down my cyberlife so that husband doesn't have anything to worry when I am gone." And so I started deleting Facebook accounts, WordPress and Tumblr blogs, LinkedIn account and multiple email addresses. I already accepted my fate, I already gave up. The only accounts that remained were my email address linked to my university email, the group blog for Filipinos living/ wanting to live in Germany and my Twitter. But my husband is the most optimistic person I've ever met. Without him, I may have succumbed completely to depression, if not because of my rare disease. He told me to continue fighting, and that I should not give up because he is never going to give up. Honestly, I challenged him for divorce because I don't want to be a burden for him, but he didn't accept it and reminded me of our wedding vow: "in sickness and in health, for richer or for poorer...". He is indeed the greatest gift I have ever had in my life.

And now, here I am, creating a brand new online journal. At first I thought of this as an awareness blog for Marfan Syndrome,  but then I realized that there are already multiple support groups here in Germany, and even if I target fellow Filipinos, my goal will remain unreachable because I am thousands of kilometers away from Philippines, and I honestly no longer have contact with my cardiologist uncles to help me start an organization. After my last post about lists of Marfan Foundations and hospitals, I was left with the question "what now?". So I did a little editing on this blog, changed the blog title, converted the About page to a blog post, edited category names, a little changes on header and voila! It is again a blog that speaks about just everything in my short life. The new blog title is the rebirth of my first-ever-now-gone-Blogspot blog. Funny that after all the multiple blog trials I did since 2005 (blogged with multiple accounts in Blogspot, Tumblr, Weebly, and WordPress), I would end up with the (almost) similar blog title of my first blog. The URL though is brand new because my past URLs are already gone for good. That said, I admit, I have really a chaotic mind, I can't just stay satisfied with one thing (except in relationship, that's the only time I settle for one for the rest of my life), and I can't blame you if you were my followers before and you no longer want to follow now because I might delete this again in the future. That might be true, I can't assure you that this is really the last one. My mind is in chaos because there are a lot of things I want to accomplish before my time is up. There are thoughts that keep on swirling and I just want them put into words in any way possible.

So let me just be me in this small world of mine in the cyberworld.

Why Me?

Note: I will be posting in Taglish (Tagalog-English) because I really want to pour my emotions out.

Kahit na puno ng positivity ang last post ko, at puno ng hope ang bawat tulang sinulat ko, aaminin ko, mas madami ang depression moments ko mula nang malaman kong may aneurysm ako. First, andun yung takot ko noon, takot na hindi ko malalampasan yung operasyon, takot na yun na ang katapusan. Ang dami kong luhang iniiyak, kasi hindi pa ako handa. Hindi ako handang iwanan ang mga mahal ko sa buhay. Aaminin ko, ilang beses, at hanggang ngayon, paulit ulit kong tinatanong, "bakit ako?". Why me, of all people in the world. I know I am not the nicest person on earth, pero hindi din naman siguro ako ang pinakamakasalanan. After nung first operation ko, labas-masok ako sa hospital dahil sa complications, at promise, sumuko na ko. Ayoko na, hirap na hirap na ako sa sakit, sa hindi maipaliwanag ng agham na pinagmumulan ng lahat nung sakit. Okay ang CT-scans, pero laging may masakit. Tatlong araw lang ang itinatagal ko lagi sa bahay, ambulansya na ang naging sasakyan ko, kulang na lang yung hospital address na ang ipalagay ko sa federal ID ko. Itinatanong ko sa asawa ko, bakit ako, kasi baka may maisasagot sya, gaya ng mga panahong inaaral ko ang history ng Germany at ng Europe, may handang sagot sya lagi, pero wala syang naibigay na sagot, at ang sakit para sa aming dalawa. Para sa akin kasi di ko alam anong mangyayari bukas or sa makalawa. Para sa kanya kasi nakikita nya akong walang gana sa kahit anong bagay, laging depressed, laging nasa kwarto, tulala sa kisame. Hinahatak nya ako laging maglakad lakad, para may iba akong maisip, binibili nya lahat ng matripan ko, kesehodang pambata man yun. Andyan yung bumili ng PS4 at kung ano anong laro para maaliw daw ako pag nasa work sya. Kumpleto ko na ang coloring books ni Millie Marrota, yung kay Johanna Basford kulang lang ako ng isa, at kung ano anong coloring books pa ng iba't ibang publishing house, may 19 na ata etong coloring books sa shelf ko. Pag napapadpad kami sa bookstore, minimum 3 books lagi ang bitbit ko pauwi, kahit halos wala akong nababasa sa kanila, napupuno lang yung shelf ko, hindi naman nabubuklat. Pero hindi sya tumitigil, basta daw makakabawas sa depression ko, hindi sya magdadalawang isip bilihin. I am the luckiest girl alive kung asawa ang pagbabasehan. He is always there at my side, and takes really good care of me. Pero may araw talaga na feeling ko ako na ang pinakamalas na tao sa mundo. Ang sakit talaga tanggapin na ako ang may karamdaman na ganito. But ano pa nga ba magagawa ko? Embryo pa lang ako andito na sya, sooner or later talagang lalabas at lalabas ang symptoms. All I can do is to accept my fate, fight the negative thoughts and try to look forward. Ang hirap, pero kelangan kong gawin. Nagpaplano ako for days ahead of me, months, even years, kahit na walang kasiguruhan kung ilang araw, buwan o taon pa ang nalalabi para sa akin. I continue to write my plans and dreams, because those things makes me feel more optimistic, it gives me a tinge of hope to hold on and continue the fight.

Sabi nga ng kaibigan ko dito, laban lang ng laban, walang sukuan!

Me and Marfan Syndrome

First of all, I wanted you to understand what is Marfan syndrome. I would just like to quote completely the definition from Marfan Organisation website:

Marfan syndrome is a genetic disorder that affects our body's connective tissues. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly.

Connective tissue is made up of proteins. The protein that plays a role in Marfan syndrome is called fibrillin-1. Marfan syndrome is caused by a defect (or mutation) in the gene that tells the body how to make fibrillin-1. This mutation results in an increase in a protein called transforming growth factor beta, or TGF-β. The increase in TGF-β causes problems in connective tissues throughout the body, which in turn creates the features and medical problems associated with Marfan syndrome and some related disorders.

Because connective tissue is found throughout the body, Marfan syndrome can affect many different parts of the body, as well. Features of the disorder are most often found in the heart, blood vessels, bones, joints, and eyes. Some Marfan features – for example, aortic enlargement (expansion of the main blood vessel that carries blood away from the heart to the rest of the body) – can be life-threatening. The lungs, skin and nervous system may also be affected. Marfan syndrome does not affect intelligence.

Physically, one can detect a Marfanoid through the following signs:

• Long arms, legs and fingers


• Tall and thin body type


• Curved spine


• Chest sinks in or sticks out


• Flexible joints


• Flat feet


• Crowded teeth


• Stretch marks on the skin that are not related to weight gain or loss

Harder-to-detect signs of Marfan syndrome include heart problems, especially those related to the aorta, the large blood vessel that carries blood away from the heart to the rest of the body. Other signs can include sudden lung collapse and eye problems, including severe nearsightedness, dislocated lens, detached retina, early glaucoma, and early cataracts. Special tests are often needed to detect these features.

(Source: www.marfan.org/about/signs)

And yes, I have most signs in me. I am taller than common Filipinas, even way back my childhood. I was 2 years old when they found out I have a heart problem, one of my ventricles does not function well, but I was 13 years of age when they said my heart is again fine. I was 9 years old when my mom found the unusual curvature of my spine and had to wear orthopaedic braces until I was 16 years of age, but the scoliosis is sadly not corrected. As I came here in Germany, my scoliosis gave me difficult days, especially in winter, that led us to have it check and eventually get operated. I was operated last April 2014 from the upper part down to the lower part of my spine. I sometimes call myself a robot, because I could no longer turn just half of my body, if I have to check what's behind me or at the side, I have to turn my whole body around. I did have crowded teeth too, which was corrected by wearing braces as well, I had my braces removed though before my marriage, and now, they are starting to get crowded again. My husband finds it "amusing" too that I can bend my thumb backwards, until we got the gene test result and found this no longer amusing.

What led us to learning about Marfan syndrome was a devastating event in our lives. June 19, 2015, I was attending the university here in Germany, and I thought the pain one day was only caused by my whole day classes and the books I borrowed from the library, and I thought it was just one of those typical pain due to my scoliosis operation, because it was just a year and 2 months after the operation, and the regrowth of bone could have caused it. I logged out of my Skype session with my mom and laid in bed. Weekend went by with the same level of pain, that my husband had to do the grocery alone. I even cried and said I don't want to die, yet. That was the cue for my husband that the pain was unbearable. He told me not to go to the university next day, June 22, and we have to visit our general practitioner. Our GP gave us immediate advice to go to the hospital, but since I was still on my pyjamas and doesn't have any clothing nor toiletries ready, we went back home. I was admitted the next day, they did X-ray because they also thought of my scoliosis first and foremost. June 24 came the head doctor of internal medicine. She asked me where the pain starts and up to where it radiates. She asked me to have pregnancy test as well, because it could also be heart burn, but it went negative. She checked the X-ray once again and there, she started to get suspicious.

"Mrs. W, could it be that you have Marfan syndrome?"

"What is it? I don't know about it."

"Can you please bend your fingers, try to reach your wrist. How tall are your parents?"

I did what she said and told her the estimated height of my parents, being smaller than I am.

"Please go back to the ultrasound room, I will be there with you in a minute, I just need to show this to my boss."

I went down, and also the same time my husband came. She came to me and told me she has to do the ultrasound of my stomach, since the 2D-echo showed a normal heart, they did saw something unusual in the X-ray photo. And there it was. She called the head doctor of cardiology.

"What is it, Dr. Binder?"

"Let's wait for Dr. Weiss."

Dr. Weiss came and had it measured.

"6 cm. Call the CT-Scan section and get her first in."

Dr. Binder asked me to wait for a while at the waiting room while she gets needle to prepare me for CT-scan. My husband asked her what is going on.

"We found a dissection at her aorta, or what you call aneurysm and it is 6cm in diameter. We have to check via CT how long the dissection is."

"Is it really serious?" My husband said.

"If it gets hectic, then it is serious."

She accompanied us until CT. After my CT, the nurse said Dr. Binder adviced that we wait at the waiting room again, while she and Dr. Weiss and the chief doctor review everything. And then came the head nurse of the station I am in... with my bed.

"Mrs. W., please lie down, you are no longer allowed to move too much and also nothing to eat. We will transfer you to the intensive station."

All I can remember were the eyes from other patients in the waiting room, and me crying and my husband in panic, in panic that he even forgot my toiletries in the toilet when he picked up my stuff from the room I was in. All doctors and nurses were on telephone, searching the next big hospital who can accomodate me and do the surgery. They gave me valium to appease me. I was allowed only one more glass of water and then that's it, my food was only the infusion. Out of 3 hospitals with specialists in vascular diseases, only one had the capacity and the way is not easy  (it is not advisable for me to move out of fear that my aorta would explode), so they decided to get a helicopter instead. I was transferred to Bad Neustadt an der Saale heart center on June 26 morning. In the afternoon, 6 doctors were on my bed side, the chief doctor, the head doctor at the station, the head surgeon, their assistants and the anesthesiologist. There was no time to explain thoroughly the procedure, no time to explain the side effects of the narcotics, we were in a difficult battle against time. The only deciding factor that helped me to sign the waiver were the words of the head surgeon: there's no time, you could be dead if we delay this operation. That was all I can remember on that day. I woke up vomiting from narcotics at around 10 in the evening. The assistant surgeon was still there, on telephone with my husband. He saw me woke up and just told me one sentence before he came back to my husband on the phone: the operation was a success. You are now out of danger.

That was the time we decided, I really need to get a gene test, to know what this really is. If it is really Marfan, or any other fibrillin mutation. But due to complications and another operation done to me (from June to December last year, I was only 1 month or 2 at home, 3 hospitals became my home), I had my gene test just early this year. Just today, we were again at my geneticist and we have the result of the gene test... And yes, I am a Marfanoid. And yes, I do have the other fibrillin mutation as well. This double mutation makes it more complicated for me, especially for my cardiovascular system.

Let me leave you this advice for today: If you have the physical signs, get checked. Heart is not just any organ, when it malfunctions, it is life-threatening. Do not wait for the day that you have to go through the same devastating event I had. Let’s start a healthy living. Marfanoids can live up to old age, if you will be detected earlier and take better care of your heart.