I'm Back!

Hi everyone! I am back! Well, might not be for long, but I just missed this blog. I started backreading my old posts and it feels like I have traveled through time. A lot of things happened in five years that I am away from here. I have posted some on my Wordpress blogs (Pinays in Germany and Träume und Realität). However, there are still missing events in those blogs. It has been a roller coaster ride the past years and when I say roller coaster, it is the scariest roller coaster I rode. Honestly, I am not sure if I am really already off from this roller coaster or I am just at the part that is preparing me for another scary loop. And I am afraid. I don't know if I can survive the next loops.

I honestly miss writing, but I just can't find the right words to blog more often just like the old days. I wish this will be the start...

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.

Gloom

Words are gone,
Feelings I'm not sure.
World's all grey,
Sand full of snow.

Goodbye, Beautiful Dream

There was never really an us,
There was only you and me.
What we thought we once had,
Was just but a sweet dream.

I was never really meant for you,
Nor you were destined for me,
The love was just a thought,
Just in our fantasy.

My Personal Choice of Must-Read Books

Everyone has her favorite books of all time, books that made a great impact to one's life... Mine are these and the list might still get longer as time goes by.

(Please excuse if the title links are in German, I am now living in Germany and I read more in this language nowadays in order for me to develop my German skills.)

FICTION

• Myths of Classical Antiquity


• Victor Hugo's Les Miserables


• The Picture of Dorian Gray


• 1984


• Alice in Wonderland


• Cecelia Ahern's P.S. I Love You


• Cecelia Ahern's The Year I Met You


• Sterntagebücher


• Philip Pullman's His Dark Materials Trilogy


• To Kill A Mockingjay


• Go, Set A Watchman


• Jodi Picoult's My Sister's Keeper


• Dean Koontz's The Door to December


• Sophie's World


• The Old Man and the Sea


• One Hundred Years of Solitude

 

NON-FICTION

• Ich bin dann mal weg: Meine Reise auf dem Jakobsweg

"Everything has a meaning, if only we could read it."

Lyra’s Oxford

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".

“Nowadays people know the price of everything and the value of nothing.”

― Oscar Wilde, The Picture of Dorian Gray

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.

Marfanoid Chronicle

It's almost a year since my last post about my battle. Since my last post, I had been into series of check ups and around three or four hospitalization. It was found out that I have a "deadly" allergy to CT-scan contrasts. I was hospitalized thrice because of it, the first one was not severe, but the second and the last one was really deadly. It was then advised not to undergo the scans again. Which made it more challenging for my doctors to monitor my stents. For a year now, I honestly feel much better. There are pains once in a while, but a rest is enough and I am back on my feet. I just noticed though that severe weather temperature is not my friend. Winter this year was a bit colder than the past winter I experienced and going out was a real struggle for me. Ten minutes out in the cold and it feels like I am fainting anytime. Hence, almost whole winter I was just home. I may feel quite well recently, but inside of me, something's waiting to be repaired/ healed. That's the reason why last December, we had a meeting with the head of the Vascular Medicine of University of Aachen Clinic, where one of the Marfan Center in Europe is also located. Prof.Dr. Jacobs is a very nice and competitive doctor. We are planning a new operation this year. I am just waiting for his advice, I already had my heart and lung function tests done. I will, of course, keep you updated on what's done on me. I am quite nervous, but I trust my new doctor completely and I know God has a better plan for me for the future.

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!

Marfan Organizations and Centers

PHILIPPINES:

still searching for Marfan Foundations (comments are highly appreciated!) but you can go to Philippine Heart Center in Quezon City to get checked at an affordable price compared to St. Luke's.

GERMANY:
Marfan Hilfe: www.marfan.de

(the following hospitals and clinics are from the Marfan Hilfe website)

Städt. Krankenhaus Dresden-Neustadt e.V.
Industriestraße 40
01129 Dresden
Telefon: 0351 / 8 56 0
(Kinder u. Jugendliche bis 17 Jahren)

zusammen mit:

Herzzentrum Universität Leipzig
Klinik f. Herzchirurgie
Strumpellstr. 39
04289 Leipzig
Terminvereinbarung: 0341 / 865 - 1421
Sprechstunde: 7.00 - 19.00 Uhr
Ansprechpartner: Prof. Dr. med. F. W. Mohr

Deutsches Herzzentrum Berlin u. Charité
Augustenburger Platz 1
13353 Berlin
Tel.: 030 / 4593 - 2320
Ansprechpartner. Fr. P. Gehle
marfan@dhzb.de

Universitäres Herzzentrum Hamburg GmbH
Kardiologische Zentralambulanz
Gebäude O 70
Martinistraße 52
20246 Hamburg
Terminvereinbarung:
Erwachsene: Tel. 040-74105-3990
Kinder: Tel. 040-74105-2719
Ansprechpartner: Prof. Dr. Yskert v. Kodolitsch,
Dr. Meike Rybczynski, Dr. Sara Sheikhzadeh
Ansprechpartner Kinder: PD Dr. Th. Mir
marfan@uke.de

Universitätsklinikum Schleswig-Holstein
Campus Lübeck
Klinik für Herzchirurgie - Ambulanz
Marfan-Sprechstunde
Ratzeburger Allee 160
23538 Lübeck
Terminvereinbarung Fr. Meyer: 0451 / 500-6331
Ansprechpartner: Prof. Dr. Ulrich Stierle
Herzchirurgie.Ambulanz@uk-sh.de

Universitätsklinik Münster
Albert-Schweitzer Campus 1
Gebäude A1
48149 Münster
Ansprechpartner Kinderkardiologie: Dr. S. Kotthoff
Terminvereinbarung: 0251 / 83-47773
Sprechstunde nach Vereinbarung
Ansprechpartner Klinik für angeborene (EMAH) und
erworbene Herzfehler: Dr. Radke / Fr. Dr. Schmidt
Erwachsenensprechstunde / EMAH-Zentrum
Terminvereinbarung: 0251 / 83-46122
Sprechstunde nach Vereinbarung

Universitätsklinikum Köln
Herzzentrum - Klinik III für Innere Medizin
Kerpener Str. 62
50937 Köln
Terminvereinbarung: Tel: 0221 / 478-32341
Ansprechpartner: Dr. Michael Huntgeburth und
Prof. Dr. S. Rosenkranz

Universitätsklinikum Aachen
Medizinische Klinik I Kardiologie
Pauwelsstr. 30
52074 Aachen
Ansprechpartner: Fr. Dr. K. Brehmer
Terminvereinbarung: 0241 / 8035 832

Universitätskliniken des Saarlandes
Klinik für Pädiatrische Kardiologie
Oskar-Orth-Str. 1
66421 Homburg/Saar
Terminvereinbarung: Tel.: 06841/16-28305,
Fax: 06841/16-28330
Ansprechpartner: Prof. Dr. M. Abdul-Khaliq

Universitätsklinikum Heidelberg
Klinik für Herzchirurgie
Im Neuenheimer Feld 110
69120 Heidelberg
Sekretariat: Fr. Inge Weber
Tel.: 06221-56 6279
inge.weber@med.uni-heidelberg.de
Ansprechpartner: Prof. Dr. Klaus Kallenbach

Klinikum Stuttgart - Katharinenhospital
Zentrum für Herz- u. Gefäßkrankheiten (Erwachsene)
Kriegsbergstr. 60
70174 Stuttgart
Terminvereinbarung: 0711 / 278 - 35202
Sprechstunde: nach Vereinbarung
Ansprechpartnerin: Dr. Elke Roser

zusammen mit:

Klinikum Stuttgart - Olgahospital
Pädiatrisches Zentrum (Kinder)
Bismarckstr. 8
70176 Stuttgart
Terminvereinbarung: 0711 / 278 - 72441
Ansprechpartner: Dr. Frank Uhlemann

Universitätsklinikum Freiburg
Zentrum für Herz- und Gefäßchirurgie
Hugstetter Str. 55
79106 Freiburg im Breisgau
Terminvereinbarung: 0761 / 270 - 77950
Ansprechpartner: Prof. Dr. M. Siepe

Deutsches Herzzentrum München
Lazarettstr. 36
80636 München
Terminvereinbarung. 089 / 1218 - 3006
Ansprechpartner Prof. Dr. Kaemmerer

WORLDWIDE:
Marfan Organization: www.marfan.org