Iceland: Reykjavik and the Golden Circle

Iceland is a place where it has not yet been disturbed by human beings. People to horses is three to one. There are not that many trees but plenty of lava rocks. It’s possible to see glaciers, volcano, black beaches, and waterfalls within one day . My favorite spot was the Blue Lagoon which is a geothermal spa.  Chasing northern lights was as fun as seeing it! (Unfortunately, I have no picture to show for it!) Besides nature, be ready to pay for expensive food because most things are imported. If you love nature, you will love Iceland!

My Grandma’s Soy Pork and Egg

One of my most vivid and fondest memories of childhood is the bento box that grandma prepared for me for school lunch everyday. It was not fancy at all but it was tasty. For six years, everyday for lunch, I ate a soy boiled egg, soy stewed pork, and white rice. No vegetable. I emptied the bento box everyday.

A couple of years ago, when I had the chance to spend more time with grandma, I pestered her for the recipe. My 96-years-old grandma responded, “I have not cook in a long time. I don’t remember!” But I persisted. She finally told me! I was so excited to find out her secret that I cooked it that night while she hovered around the kitchen door giving more instructions. “More wine. What can do you with that little bit of wine!” “More sugar. That makes it shine!” I can still hear her clearly in my mind. (Note: My aunt did not like grandma near the narrow kitchen anymore while we cook. Just to be safe.)

One thing I’ll say about Grandma’s recipe: My 96-years-old Taiwanese grandma told me this from memory verbally so it’s extremely imprecise. I always had fun just sort of making it up every time I made this. However, it is a very forgiving recipe and very yum! 

Modified Instapot recipe of soy pork belly and eggs based Grandma’s:

#instapot: 40 minuets instead 4 to 7 hours on stove top

Ingredients and Preparation:
Before: pork belly (I found some from Wholefoods that were pretty good; cut in cubes but not too small), eggs (boil and peel shells), garlic (peel skin), soy sauce, rice wine, brown sugar (2 to 3 spoons), star anise (3). I found that the dark soy sauce tastes better but you can use any kind. Lots of garlic. You can never have too much. Pork that has some fat tastes better. But you can go completely lean if you want.

Steps:

  1. Put pork, eggs, garlic, and star anise in the Instapot.
  2. Add about half inch of soy sauce and half inch or more of rice wine. The rice wine gives it a good flavor. Add water until everything is covered in liquid but not more than a third of the pot (which is the standard insta instruction).
  3. Add brown sugar which gives the meat the shine!
  4. Grandma said, don’t be stingy with your soy, sugar and wine!
  5. Cook and wait. On stove top: slow fire for about 4 to 7 hours. Instapot: around 40 minutes on medium. It also depends on how cooked you want the meat to be.

If you are adventurous, you can add carrots, potatoes, or tofu. Anything that you like with soy sauce! Enjoy!

P.S. I have a food journal on Instagram if you want to see more photos of just food!

Look At All These Data

Since my last post on PHR2, continuing with my interest in personal health records , I downloaded Partners Healthcare Patient Gateway app and set up Apple Health app. Patient Gateway is the system that my primary care doctor’s office provides for free.

The Patient Gateway app allows me to contact my doctor’s office directly and easily through the app without having to pick up the phone and call. My messages were always responded within 24 hours. In addition to Messages, I now have access to my Appointments, Appointment Details, Provider Letters, Test Results, and Medications. I can also View and Pay Bills. I now have a wealth of more detailed information from my doctor’s office that I did not have before. I feel that I have become an insider!

The Apple Health app connected directly with my primary care doctor’s system. The app is automatically populated and updated with my records from the doctor’s office too. One part of the app is the Health Records. It keeps track of different kinds of records such as Allergies, Clinical Vitals, Conditions, Immunizations, Lab Results, Medications, and Procedures.

I am excited to have access to my own records via these two apps. If you remember my analog of the personal finance systems (see post: Personal Health Records), as an ePatient, my experience has definitely been upgraded. I now have access to my records digitally, automatically, and in a centralized place online. Patient Gateway app also allows me to take actions for my health via the app. Apple Health app also allows tracking of additional personal healthy data outside of the doctor’s and hospital visits when I am not sick or doing a check-up. There are more functionalities that I need to check out!

This is all very exciting! Great progress made for individuals like me! As the technology and access advance, I can now be better informed. I also have the opportunity to learn more about my own health. I already feel more in touch with my own health because of these two apps.

With better data, now the question is what do I and the apps do with this knowledge. As an ePatient, am I making better decisions about my own health, and ultimately, am I becoming healthier? Can I look at all these data and make sense of my health status from it all? Can my care be better coordinated, i.e. to reduce duplicated tests? Can care transition from doctor to doctor be easier, i.e. changing primary care doctors, from primary care doctor to specialist, or from specialist to specialist? Can the apps add smarts such as personalization and recommendations? Can mental health records be included? What about records outside of doctor’s office such as from research and third-parties like 23andMe? Can we eventually get to family history and managing risks?

Really looking forward to more updates from Partners Healthcare and Apple! This is a great time to be an ePatient!

P.S. I have also downloaded the CVS and BCBS apps. Will have to learn more about them next! Rounding out the pharmacy and health insurance!

It’s Logical!

“It should always be remembered that the behavior of persons with schizophrenia is internally logical and rational: they do things for reasons that, given their disordered senses and thinking, makes sense to them!” -Torrey, E. Fuller. Surviving Schizophrenia. 1983. Page 49.

“The ideas I had about supernatural beings came to me the same way that my mathematical ideas did. So I took them seriously.” -John Forbes Nash Jr.

*~*~*~*~*

My friend J read a draft of my memoir. He was surprised that my story was not chaotic or filled with confusion. He made me want to tell my story even better, even more, to show that my experience did all made sense to me. I took very deliberate steps to make sense of what was happening to me and around me.

Let’s start with hearing my first voice Joe. For the 30 years of my life before that moment, I had trusted my ears without any problem. I have pretty good hearing. When I first heard Joe talking, I looked for where the talking was coming from, for someone, for speakers, or anything that might broadcast the voice. I did not understand how “he” was able to talk to me that way. So I continued to investigate. I thought that there might be some smart technology being used. I heard the man talking! That was real to me! I tried to understand what “he” wanted! That’s usually why someone talks to another person.

Another example is that my senses became super acute. I noticed so much more from my surroundings. You can relate to this. Someone coughs loudly in front of you and makes sure that you see her. We do this all the time! Could be for fun, for joke, for giving you a hint by saying something while coughing. Another example. Someone puts up a V sign with their fingers at a sport game. We all know that means victory! So, when I start noticing everything around me, it felt like they should mean something. More people were coughing around me, so I thought, is this a bad winter? I did not say to myself, why am I all of a sudden hearing more coughing. I just did. Everyone did. I wondered why! I tried to understand what they or that meant!

Is it really logical to say “I hear someone talking” or “so many people are coughing” then conclude that “I have schizophrenia?” Ironically, to me it felt more like taking a leap of faith later, when I was told to take a pill and not being told why and what it would fix.

My strategy of dealing with things that I don’t understand is to use my brain to logically break down and solve the problem. Similar to what Nash said, I was the same person when I triggered schizophrenia. I tried to solve schizophrenia with logic. I am glad other people’s experience and perspectives described in Surviving Schizophrenia echoed mine and why they don’t think they were crazy or mad either.

Instead of thinking that people with schizophrenia would typically behave abnormally, I suggest we think of it as people being presented with and experienced abnormal things first. These things could be visual, auditory, or sensory. Think of these as “external” stimuli, not internal! That’s the perspective I am asking you to have. Schizophrenics are just trying to make sense of it all like everyone else with life. Sometimes, to deal with things that don’t make sense, you might have to do something different or unusual. Having reactions are appropriate and expected human behaviors!

Really, it’s a broken brain in charge!

 

Side Effect

“This is a very important problem, with some patients gaining sixty to one hundred pounds. Its mechanism is unknown but may involve increased appetite and/or effects on leptin, a hormone important for fat metabolism. Most disturbing are data suggesting that weight gain and the efficacy of the drug may be related, that is, you may have a choice of being fat and non-psychotic or thin and psychotic.” -Torrey, E. Fuller. Surviving Schizophrenia. 1983. Pg 217.

*~*~*~*~*

I am a very lucky person who only fully understood and experienced “side effect” after I turned thirty. I am both humbled by and mindful of what modern medication can do.

One of the major adverse side effects of second generation antipsychotic Olanzapine (brand name: Zyprexa) is weight gain. When I started taking Zyprexa for schizophrenia, no one told me about the possible problem of gaining weight. My body adopted to the medication the same way most people did. My body changed how it reacted to food.

The first thing that changed was how hungry I felt when I was eating. I never felt craving before this. But now I did. Having growing up never had to resist food and always had been a stick, I did what I always did. I ate whenever I was hungry. Now, my stomach felt like an endless hole. No matter how much food I put into it during a meal, I could always eat more. I did not feel food the same way. I loved trying new restaurants with friends. I kept eating and gaining weight. I gained 30 plus pounds and went up from size 0/2 to 8/10 in a few months. I finally was worried. Something changed. But it was not me, was it? 

During my thirties, there was a few times when I was off my medication. As soon as I was off Zyprexa, my weight dropped. I would lose 15 to 20 pounds in a couple of weeks. I would no longer feel so hungry. I realized and validated that my medication was changing how my body dealt with food. Taking medication to cure a problem traded another (relatively minor, true that is!) problem.

As much as I loved eating, I had to start watching how and what I ate. The side effect was now a reality and I had to learn a new eating habit even though I felt like my old self, that I had not changed. But my life did change because of schizophrenia and I was no longer a skinny Asian stick who did not need to think about the action of eating. Ironically, in the last decade, I spent more time managing my weight than schizophrenic symptoms. (Knock on wood, my schizophrenia is controlled by Zyprexa and I am very thankful for that!) My cousin gave me a wireless scale as a gift in 2012 and I have been tracking my weight daily since then. I learned that if I ate three “normal” meals, normal as in pre-schizophrenia days, I would gain half of a pound a day. It never failed to do that. So I had and have to consistently work on this daily!

On the bright side, it seems that now my stomach has gained back some sensation in the last couple of years and I do feel a bit more when I eat. Perhaps, my body is readjusting to the medication and bouncing back a bit after a decade!

For the most part, I am still very much a foodie. And to quote my dad, “you are lucky you can eat!” Indeed, I am!

Managing side effects from medications is a serious focus for anyone who is managing a chronical disease and taking medication. We know that life is a balancing act and full of learnings and tradeoffs. It’s not easy but we have to keep at it.

Behind every person and body, there may be a story! We can all be more understanding and not judge someone too quickly.

Being a Research Subject

Right before I was discharged from McLean hospital, I was asked to participate in a clinical study. I had never done that before and was very intrigued by it. It made me feel that I was doing something good, using something I uniquely had. I had a brain people were interested in. I felt useful.

A gray-haired doctor came to interview me about my schizophrenic experience for about two hours. We sat face to face in my room. He asked all kind of questions and I answered as best as I could. What was the first time I experienced an episode? How did I feel? What does living in a glass house mean? While I was talking, he took copious notes. I just kept talking. He did not stop me from going on and on. His expression welcomed it. He took time and went through his big binder flipping through each page, asking and writing.

Another young woman came to me after that while I was at the hospital and told me that there was a second test that involved taking MRI scans. I had never been in an MRI. I again happily agreed to take the test. The young woman who ran the study came to my room to take me to the MRI lab. She told me that it was hard to schedule a scan since so many people needed the scan time. I imagined that it would also be an expensive test. When I got to the lab, she explained me to what was going to be done. Then I lay in an MRI tube listening to different audio clips for a few hours while the machine took pictures of my brain and body. Sometimes, I was asked to answer questions by pressing buttons using my fingers. 

When I first participated in studies at McLean, I did not know what these studies were. I did not think to ask.  After I was discharged from the hospital, I decided that I wanted to continue to give something back. I was so grateful for the care that I received at McLean. So many people took such a good care of me. I was fortunate to benefit from modern medicine and science. I should do my part to help others. I could look for more opportunities to participate in more studies.

I got in touch with Mass General Hospital and Harvard University, in addition to McLean, participated in several more research studies. The studies ranged from logic tests, memory tests, (which I was very bad at,) simple questions and answers, MRI scans as I listen to sounds or watch images, brain wave scans, to keeping a social diary every day for a few weeks, to open-ended conversational interviews.

I became more comfortable as a research subject. I started asking researchers I met more questions, about their methods, and why they were doing what they were doing. I met a graduate student at Harvard who had a brother who had schizophrenia. She wanted to understand more of the world that her brother was in and to know if social interactions would help with schizophrenia. I met another student at MGH who was studying how schizophrenia affects cognitive abilities. I met another graduate student at McLean who wanted to know if looking at the brain wave patterns could help detect a psychotic episode.  

I asked researchers when they were planning to publish their studies. I wanted to know if there was any new breakthrough in the field of schizophrenia, especially if I was one of the data points. Often, the answers I got were always something like. “We are collecting the data first, which would take x years. Then we have to analyze the data and look for evidence. That will take some time. After that, we can decide if there are any findings that are significant.” It takes a lot of work to make a breakthrough. There are a lot of people working on making lives better for people like me. It’s not easy.

Not only did I gain a deep appreciation for McLean, I also met many others outside of McLean who are working on improving the lives of people with schizophrenia. Researchers and doctors were trying to find a way to identify schizophrenia through brain images and waves. During the first three months that I was lost in my thoughts early prevention might have stopped me from triggering a schizophrenic episode. There are cases of people who only experienced one psychotic episode in life. I could have been one of them. Other researchers focused on improving ways to live with schizophrenia, such as developing social support. If I had someone to talk to during that first three months, perhaps I would not have gotten stuck the way I did or avoided my hospital stay.

When I talked to my therapist Deborah about participating in studies, she asked me, “Why do you want to be a lab subject?” I told her that I wanted to do my small small part. That was the only thing I could do for others like me. She surprised me by reminding me to focus my time and energy on my own life first. I will, I promised. But I don’t mind being a data point; while I can, I’ll continue to participate in research.

Remember This On A Rainy Day

To me, I say to remember this on a rainy day.

Singleness. I fully embrace it. During weekends, I can get up at 8am or 11am. It takes me 10 minutes to get out of the house and I don’t have to wait or hurry. I just use the bathroom. I just eat, either out of my fridge or at a restaurant, at 4pm or 7pm. I get home when I get home. Everything at home is always where I remember it to be. I don’t have a TV or car and that’s okay by me. My home is simple and not cluttered which is just the way I like it. I have lots of time to work on interesting problems, read and sip tea, write and sip wine, take walks, travel, and hang out with friends! I am not responsible for little people 24/7 and are always amazed by my friends who are parents at how much effort and energy they have for their kiddos.

I can dance in the middle of my living room. I can sing along with my Spotify playlist. I can wear PJ all day. All not to be embarrassed. My home is my safe and private space, and more than enough space just for me.  I have absolute freedom and independent love in life. For that, I am thankful and grateful.

Dating is a great way to meet new people. Everyone is hopefully and scared at the same time. We all have a heart made of glass hoping to hand it to someone who won’t accidentally drop it on the floor. It’s truly an adventure.

Here is what I would like to say to the me with a man. Remember how full life was when I was single. I took advantage of singleness and did whatever I wanted. Even though I had not met you, I had a wonderful life surrounded by friends and family. I was taking steps everyday to learn and become who I am as a person. Now I am with you. I am hoping to learn about the life of two, love of two, and maybe with kiddos too.

Singleness and couple-ness are just two different journeys, each has its good and learnings. Don’t forget the life lessons from both journeys. Remember to always enjoy life no matter what.

Today’s top of mind.