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.

Dating Books

Dating men can be like “dating” books!

Don’t judge a book by its cover? Well, I do. Firs impression matters. Are you glossy or matte? Are you a paperback or a hardcover? With a dust cover? Is it black-and-white or color? What is the title of the book? Do I want to open the book after seeing the cover?

Let’s say the cover passes the gut check. Awesome. I am now opening the book and excited to read the first sentence of the first chapter on the first page. The most common first message I received on online dating websites is “hi.” Imagine that in a book! The first sentence should probably be more than one word but not taking up the whole page either. Underwhelming and overwhelming are both undesirable. There is no rule to say what is a absolutely good first sentence. It could be a split-second decision or a longer and slower read. If what is written intrigues me, then I will probably decide to keep reading.

After reading a few more pages, I can pretty quickly know if there is chemistry between me and the book. Sometime, a book is easy to read, or interesting, or challenging, or impressive. Fiction and non-fiction are definitely two different reading experiences. And I know for sure that I don’t like short stories. I have tried many times and the outcome is the same no matter how great the book is. The poor book is not being read gathering dust in a corner and I hit myself in the head for buying it (again!)

There are times I just can’t get into a book even with a promising start. For whatever reason, there is no connection. I am reading the words but I am not getting anything out of it. In that case, I find that it’s good to put the book down and say I am going to pass on this one. I am in my forties. There is really no point reading every single book cover to cover. Who has that kind of time at my age?

For the times that I am unsure, I sometimes give it a longer try and read a few more pages or chapters. I either get pleasantly surprised or stop reading. I find that I am mostly right listening to my gut. But taking risk and being open is part of the adventure.

Spending time reading a book is a precious activity. To me, it’s quality time for myself. I am wiling to put everything aside and invest that time in a book. When I am in the middle of a good book, I am walking on air. Some book requires pacing and other I lose sleep over reading. Some stories are memorable!

I am always looking for the opportunity to be inspired, to learn and to see something new in this world.  Cozy up with a cup of tea and a good book on a Saturday night is amazing. Times goes by so fast when it’s good! Even though I have my share of unmatched books, I am for sure going to keep dating books!

Okay, I know men is so much more than books. But can you kind of go along with this for fun with a book nerd like me?!? <grin> I am also limiting my imagination to the first few dates before being exclusive. After the warming up period requires a whole different post! Lastly, the same holds true for me as well. I think about how I hold up as a book!

May everyone always enjoy your book happily! If you like reading.

 

A Dedication

He is as sweet as they come, she believes.

They are young, both with wide-open eyes, arms, and hearts. The sky is always blue; classes are always good for naps. He loves to show off his sports car; she loves to watch him showing it off. The meeting place can not be more perfect. They are partners in classes, constantly challenging each other. They discuss and debate about life and death, purpose and principle, happiness and goals. They spend their first summer roaming gorges, hiking forests, playing in the parks, and hanging out in a little town in upstate New York. He knows where to go: taking her to the quaint restaurants, the one-and-only lame mall in the neighborhood, and as many movies as the cinema plays.

He is as much of a gentleman as any college boy may strive to be. She knows that she has the eyes for goodness.

She thinks he is special, this incredible blend of east and west. He dislikes his past made of boarding school and various places in the world. She reminds him of how the journeys in the past built his character, a fine one that is. He looks for his root; she sees his core as solid as any rooted person may have. He treats her like a lady; she falls for that always.

He is ambitious to do something great. So is she.

All college years end and all collage kids grow up. He begins a new life chapter in the corporate world. In a pretty happening city, he makes new friends, keeps fit, and works his butt off. His higher education seems to have paid off. She starts her new life a few hundred days later, following his lead pretty closely. With a bit of luck, they find each other again in the same city and decide that it is a great thing to keep it up.

He is loyal, earnest, and studious. She is no less.

When solving a problems, he puts in his best. He becomes credible to his teams. She admires him and works harder. They are both career-minded people who determine to be proud of their work. They are surrounded with like-minded people and they keep moving upward.

He cares and she is touched.

She is deeply moved at how he takes care of her. The evidence is especially visible when she is sick. He always knows what to do, what drug to get, what food to buy, where to go, and who to call. He touches her many times with that tenderness. She is thankful.

He is a Peter Pan. Secretly she is too.

Their favorite movies are the Disney ones. He owns almost every one of them. (Let’s keep that under the covers!) He also catches all the actions and sci-fi’s; she loves the sappy romantic comedies. Regardless, they always watch together. A bit unusual, they fight to let the other to order food at the restaurant. They are both flexible and considerate in nature. Perhaps a bit too considerate …

If in this day and age the concept of marriage does not exist, they would be the perfect couple. They hardly fight. He makes jokes; she can’t stay mad at him. They enjoy each other’s company; they also allow for personal spaces. She likes to hang with her girlfriends; he picks up the boys and does whatever until the girls return. They are comfortable with each other. They are open with each other. They take care of each other in their own ways. They seem happy.

He is responsible and she is mature.

Things happen and everything is a blur. Basically, he knows what he wants and she knows what she does not want. They are inseparable. Their friends are inseparable with the this combo too. But perhaps a break is good for them even it is not good for anyone else. Their circle friends are sad. The boy and the girl remain civil; they become good friends.

He continues to search for what’s important in life. She does exactly that too.

At this turning point in their lives, they are both searching for the meaning in life. She believes that one can’t love another without defining oneself first. He looks to religion for answers. She wants to fill more philosophies in her head. He wants to know God’s will and finds the plan that’s for him.  She travels to see the world to explore possibilities. She is reshuffling her self; as is he.

He needs most a friend; she needs most her solitude.

She feels selfish to abandon a dear friend. She realizes that she is not capable of being a friend. Not right now. At a time of healing and soul searching, she must take care of herself first. He is the reason for healing and solitude. He is also the one who needs a friend the most.  She is torn between her affection for him and her own needs. She fails at the balancing act.

“Why” he asks. She can only smile.

How can she help him understand? You see, these two handle healing in the exactly opposite way.

She is constantly aware of her intrusion to the external world. She prefers not to talk to anyone when she is unhappy. She prefers never to think ill of anyone and be morally good. When she is confused, upset, or sad, she wants to fix it on her own. Perhaps she is just an introvert at heart. She is just built that way.

He is constantly looking for chances to interact with the external world. He prefers not to be unhappy and never think ill of anyone. He prefers to be a morally good person. When he is confused, upset, or sad, he wants to fix it. He helps his friends and that makes him happy. He stops being sad by just getting over it. He talks about his problems and solves them with his friends. He is just made that way.

She still sleeps the best – feels the safest – when he is around.

She does not want to be upset any more because of him. She feels that she lives in the past, does not want to feel that way, and wants the current chapter closed. She is aware that once again she is making a decision that will affect the both of them. She is very sad.

She needs some space and time for herself.

Long after their break up, she finally cries about that for the first time. Her body is reacting too slowly; the tears quietly fall from the corner of her eyes. Or maybe the brain is just faster than the heart. The sadness lingers not more than a couple of minutes. She hates being wimpy. Here her eyes are quietly wetting again.

No offense. She needs to be ok. It will take her so many years to “get over” it. She does not have the strength to be strong anymore. She does not have any answer, explanation, or theory anymore. She needs to be left alone for a while. She needs to take care of herself. Then she can come back and be his best friend again. Then she may be a friend for anyone. She needs to feel that she is ready…

This chapter is as beautiful as it comes between a boy and a girl. He is as sweet as they come, she still believes. No matter what happens, this boy and this girl will always know that they had loved each other dearly with all their hearts.

That’s a brainless predication and a fine closing note.