Avocado Tree

Growing avocados (in containers)

Several weeks ago, we moved to a new place (and my excuse for missing Severe ME Day is that I did not have the internet access due to the move). I was a bit worried that our new place might pose a problem due to accessibility since it’s an old place with a narrow hallway and two short steps leading to the unit, but I immediately fell in love with our new home.

Last year, we had to hurriedly move out of our student housing, because a 420-square-feet one bedroom apartment simply did not offer enough space for caring for someone who could not even sit up for a minute. We had to make it to one appointment out of that apartment, and it was a circus trying to fit the wheelchair in through the narrow door and transporting me while I could not support my weight at all. We were in such a hurry to move to an accessible housing. In our next apartment, I was confined to my bed as I tried to recover from the mega-crash. By winter, I could venture out to the living room occasionally to watch football games and play video games, but after a trip to LA for a few days (spent in the hotel room except for going to the Rose Bowl game), I was back to spending all my days on the bed again.

Then this spring, something remarkable happened. With some changes to my treatment, I had a significant recovery to my functioning. I first tried going to a store to grab a quick snack. And then I could go out for an entire meal, first on my reclining wheelchair, and then, later, regular seats during the meal. My brother came out to see me during summer, and it was a real treat to be able to go out with him to try a new sushi place. With my power wheelchair, I could go out for a stroll to hop on the Pokemon Go hype train to catch Pokemons. I was (still am) limited in frequency and duration of outings, but when my world consisted of my bedroom and my bedroom and my bedroom for a whole year, this change was almost revolutionary. When your health declines rapidly or you are stuck in one room during your entire stay, it is hard to build fondness to the place. With our move coinciding with my newly found stamina, our home of one month already feels more like a home than old places past two years.

We have a small yard in our new place. I always thought I’d rather live in a condo than a house because of the hassle of gardening. But the moment I step in our barren back yard (it needs re-landscaping), I am flooded with so many ideas I want to try. Lightly fragrant Korean perilla (my favorite green) in the corner, and tomatoes and salad greens. Habaneros for my spicy-holic husband. Small pomegranate and fig trees in one corner.  I guess I do take after my grand parents after all, who took me to a small farm they were working with a few friends every weekends when I was little. Then, I have to remind myself I have M.E. and I need to moderate my activity, and gardening right now is beyond reasonable (and we are renting, so I would need to part with this house eventually). I do take a mental note that I do want to buy a house with a nice back yard to set up a small orchard (which probably would not happen unless the housing market crashes or we win the lottery, but one can dream).

So I settled with three trees to be grown in containers. Two avocado and one lime trees. With my recent avocado craving, growing my own avocados to make a smoothie everyday sounded just too good. We grabbed trees from local nurseries, thankful that I was well enough to go out to pick the trees myself, and transplanted them into big pots.

In high school, my father and I planted an Asian pear and a peach tree in the backyard. We dug holes, dropped the tree in that we bought from Lowe’s, not a local nursery, and put some red colored mulches around it because that was what we saw around neighbors’ trees. The pear tree settled down well, but the peach tree died, although suckers later showed up and my parents kept the root suckers as the new peach tree. I now know growing a tree is more involved than simply covering the roots in soil, and wanted to grow my new trees with more deliberation to avoid what happened to our old peach tree.

My little avocado trees proved to be tricky to keep happy. Avocado trees are prone to root rot, so I need to be careful not to overwater, but keeping the soil too dry would stress the tree. The soil pH has to be right, and the same for water – I add a bit of vinegar to make our water more acidic. Not all fertilizers have complete nutrients, even if they are labeled for avocados. They need the sun, but too much and they get sunburned.

Two young avocado trees.

My avocado trees seen from my bedroom window. We planted two dwarf avocado trees in containers. It has been tricky to maintain these young avocado trees!

One avocado pot’s soil is still too moist a whole week after watering, and I start to get worried. I curse my ME that I could not make my own potting mix that would have more superb drainage than the nursery-bought potting soil. I wonder if I should consider repotting to remove soil from nursery that seems to hold too much water (I feel reluctant since avocado trees supposedly do not like roots getting disturbed).

Instead of growing in a tropical forest in the natural habitat under the shade of the mother tree, where they would be allowed to be 40-foot-tall evergreen trees producing hundreds of avocados every year, my trees are bound to a cubic foot of soil, drinking the city water that is too basic, with their branches being cut off to prevent them growing too tall. My trees are asked to grow up and thrive in a non-ideal condition. No wonder it is so difficult to keep them happy.

Trying to grow avocado trees in containers somehow reminds me of my life. I am trying to live with a body that refuses to produce enough energy to perform basic functions. It’s been a long game figuring out just the right combination of medications and supplements, and balancing activities with rests. ME is a tricky bastard.

My trees are now getting three different fertilizers and dechlorinated, pH-adjusted water. I am crossing my fingers that they grow up healthy and maybe, even produce delicious avocados!



Millions missing

Today, many ME patients, families, and friends are joining around the world in #MillionsMissing protest. This event was organized to remind people of millions that are missing due to/from ME. #MillionsMissing signifies not only millions of patients around the world who are missing out on their lives, but also millions of research funding that is missing for this costly and disabling disease. For your reference, billions of dollars are lost each year due to ME in the United States alone, but only about 5 million dollars has been allocated annually for research by the government. Male pattern baldness received more money.

I am one of #MillionsMissing from school. I have been on leave from my graduate school because I could no longer continue to work on my degree. My B.S. in geophysics is just an expensive piece of paper right now.

I am one of #MillionsMissing from work. I have to rely on my husband financially while contributing nothing to our household. It hurt my ego, but I didn’t have a choice. I loved doing scientific research. I would like to think I was good at what I did, and really miss the intellectual stimulation.

I am one of #MillionsMissing from family. I so wished to be there to watch my nephew grow up. I was there when he was burn a few years ago, but I’ve missed every mile stone of him growing up. I have not seen my grandma, who actually raised me, in years. Unless my health dramatically improves, I will not be able to attend my cousins’ weddings. The worst of all for me is that our own family plan is on indefinite hold. I really miss our child that we do not have.

I am one of #MillionsMissing from travels. We planned a trip to Disney World a few years ago. We postponed it multiple times, saying we’d go when I get better (before ME, my chronic back and joint problems meant hours on feet would be difficult; I was doing PT to help). Now we wish we just took the trip even if I’d needed to rent a scooter. There were many more traveling opportunities while I was still in school that I had to give up due to my health. Now, my only travel recently was lying down in my car while my husband drove several hours, and staying in the hotel the whole time except for a few hours to go to the bowl game. It took me a few months to recover from that. I once went on a backpacking trip for six weeks alone. It was a trip that forever changed me. My memories from the trip is fading away. Will I ever get to experience the world so freely again? 

I am one of #MillionsMissing from the protest. There is a live protest an hour away from me, but I am unable to attend. I will actually be missing from doing any related online activities because I have a procedure scheduled. Luckily (?) for me, I have another medical problem that is compounding my ME symptom, and this procedure is an attempt to help with that other problem. If I am lucky, I actually only have mild or moderate ME and I would be able to return to work and school. If not, I would have to wait for ME research to progress enough to have treatment options. 

There are so many small things and big things I can list under #MillionsMissing, and all other ME patients would be sharing the same sentiment. I am not trying to earn pity and sympathy from people by talking about everything I’m missing out on. Rather, I would like to remind people that this is normal for patients with ME at the moment. And we need everyone’s help to change it. 

I walked around for six weeks despite my  back and joint pain, because I was used to pain and that was something I could push through with my will and determination. But if I tried the same thing with ME, I would be left with severe relapse that I may never recover from. We, patients with ME, are left with no choice but to preserve whatever health we have left at the moment, because we need to survive for that one day when several treatment options would be available to help us manage our disease, or even a cure. Will you help us bring that day forward, even one day sooner, by advocating for us? Remember, there are #MillionsMissing, and even just one day we get back is millions of days saved from missing.

May 12

Today is May 12, the International Awareness Day for ME. Exactly one year ago today: 

I opened up to the world about my chronic illness by participating in #ChronicLife Twitter bomb. My husband was defending his thesis, so I marched out of our apartment sporting a blue shirt (awareness color for ME for May 12) with help of my rollator (walker with wheels) that I was increasingly relying on. And it was the last day for a very long time that I went out. I couldn’t handle going out to celebrate my husband’s successful Ph.D. defense after being out of the bed for two hours, so I gave him a rain check. He still hasn’t been able to cash it in. 

I became much sicker than I ever imagined over the next couple of weeks. I’ve gotten better since, but I still haven’t regained what I lost over the short month of May, 2015. 

Thanks to my recent relapse, I couldn’t prepare a proper blog post, but I wanted to write something here today. I was working hard on Light Up the Night Campaign for May 12 in the U.S., and I’m pretty bummed that I relapsed just when I wanted to pump out more contents for the campaign. I lack the persistence and perseverance to work through the worst unlike many of advocates (blame it on my ADHD!), but this is my shout out that I’m still here as a part of the community! 


My foot tattoo

A year ago today, I went in for my second tattoo session to work on my Earth-dreaming, butterfly-chasing cat tattoo on my foot. Did it hurt (what a silly question, but I got asked a lot)? Yes. Did I love it? YES!

Some of the reactions that I got from friends and family upon posting my tattoo picture were on the line of “it’s so good to see you doing better, out getting a tattoo,” although I never mentioned anything about my health. The truth is, I was sickest I had been until that point, and that’s precisely why I needed to get the tattoo.

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Image from page 401 of "The nation" (1865)

PACE trial

This week, an investigative journalist David Tuller published his articles on PACE trial (Trial by Error first, second, last), exposing the flaws from one of the most influential clinical study for CFS. Cort Johnson’s blog does an excellent job at summarizing lengthy articles published over three days, so I won’t go into the problems of PACE trials and what the articles revealed. Instead, I would like to share my quick experience with PACE trial.

When I was hospitalized in May, I had to deal with team physicians who had no idea about ME. It was frustrating to have to explain that I had this serious disease that they had no clue about, and the acute exacerbation could have a long term consequences. The resident doctor on my team went home and did some “research”. Of course, what she read was the PACE trial.

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Checking in!

I’ve been MIA for a while from this page and just wanted to check in and say I’m still here! Contrary to the behavior of disappearing, I’ve not gotten sicker. I was improving gradually (I consider this extended recovery from giant crash from this spring), with some ups and downs. And today is the first time in ages that I feel good!

My definition of “good” now is certainly not the same as when I was healthier, or even earlier this spring, but to give you an idea, during summer, writing anything for this blog was pushing my limit and I had to deal with consequences. Today, I’ve been using my laptop for a couple of hours working on stuff and it’s not having me reach for anti-nausea medicine. That can change any moment, but the fact that I’ve managed these many brain-powered hours is impressive for me.

I have several posts that I was working on, and if I have more good days, I will get back to them. The first one would be about the reasoning behind quiet months despite gradual improvement (short spoiler: so that I would have more improvement).

I am feeling that my battery is starting to run low, so I’m going to wrap up short here, but I think it’d be very telling for me if I can get through next couple of weeks without any relapse. I already came unscathed from one yesterday. I would have survived multiple doctors appointments over two weeks and upcoming dooms-day brought to me by pharmacy, doctor’s office, and health insurance (it’s the reason I wasted my rare good day instead of being more productive). Though, I certain wouldn’t mind if I can omit the dooms-day stuff among my feats because someone  fixes it before the weekend.

In the darkness

August 8th is Severe ME Day and this year’s theme is home care. I’m going a but tangential here because I’m not exactly writing about the need for home care for daily living (which I certainly do need). Nonetheless, when I heard this year’s theme, it reminded me of my experience with professional in-home care visits I received from the hospital discharge order.

Severe ME Day 2015. #sufferingthesilence photo

Severe ME Day, 2015.
I wanted to mark my arm with “M.E.” like others have done, but decided not to because, thanks to M.E., I wouldn’t be able to wash it off for a long time. Taking a shower is a luxury that I have not been able to enjoy for months now.

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I’ve had the same hair style for a while – long hair dyed Burgundy, which would fade to brown, and curly permed, so that I wouldn’t have to do anything to my hair everyday. I’ve always been an I-would-rather-sleep-five-more-minutes-than-do-my-hair-or-makeup person, so I do not even own a brush for my hair. All I needed to do was to run through my hair with my fingers while shampooing.

As my M.E. picked up its pace quickly since last year, my hair washing became less and less frequent. By early spring this year, it was down to once a week, and by May, even that was becoming increasingly difficult. I hadn’t washed my hair for two weeks when I was admitted at the hospital.

At the hospital, when I asked for dry shampoo, they gave me a shampoo cap that I did not know existed. I just had to wear it like a shower cap, and someone would “massage” my hair to wash it with soap and water that were inside the cap. I brought a few of them home with me when I was discharged and used it occassionally. But shampooing this way while lying in bed meant no detangling hair during the wash – in fact I think it made it worse. Also the oil and dirt that were building up on my scalp could not be rinsed away.

On one of my better days several weeks ago, I noticed a giant knot on my hair. My ponytail was undone from rubbing my head against the pillow, and I couldn’t tie up my hair again because of the tangles. Without thinking much, I started running my hands through the mess.
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Chilli in the world

I just saw an article from the Huffington Post about the Chilli M.E. Challenge, covering the challenge taken by Drs. Lipkin and Hornig at Columbia University (video) Center for Infection & Immunity (CII). It’s exciting to see this challenge pick up momentum, and ME receive positive media coverage.

ME patients have to pay for every little thing that involves any kind of effort, whether we are conscious about the expenditure or not. Just simply being awake has a toll, which I didn’t realize until recently because before my ME got more severe, my daily budget was sufficient enough for minimal functioning. The price each patient has to pay for any activity (or non-activity) is different depending on the disease severity and presentation, but one thing is universal: if we spend more than we have, we have to face PEM (post-exertional malaise) and potentially risk our long term health.

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PEM by numbers

I want to share quickly what PEM looks like with an objective measurement. A good indicator of my condition is my heart rate. Here’s a poster I put together (using a free phone app and as quick as possible because I’m still not recovered as you can see, so please excuse the poor quality of graphical aesthetics!) showing my resting heart rate since last month measured by Fitbit. It tracks my baseline condition pretty well, with higher heart rate indicating my body feeling overworked, making me more susceptible to crashing.

PEM heart rate

PEM (Post-Exertional Malaise), also referred to as PENE (Post-Exertional Neuroimmune Exhaustion), is a hallmark symptom of ME. Patients with ME (PwME) experience severe exacerbation of symptoms following exertions. Threshold for mental and physical activities that would be too “exerting” is much lower for ME patients. Recovery time is prolonged, often lasting days or even weeks.

The top graph was snapped a while ago when I started thinking about this blog entry. The bottom graph was snapped today. Yes, I’ve been tachycardiac all day and writing a blog right now is not the best thing for my health, but f* ME! (And for that matter, publishing a post yesterday did not help but I have too many things that I have been working on and wanted to get something out). This poster would be better if I make it now instead of a week later, and I need to have a blog post to go with it! It is partially to show why I haven’t been as active as I would like recently.

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