Life with COVID19 and Chronic Illness in Taiwan Update: April 2020

Coping with Chronic Illness in Taiwan During COVID19

Life with COVID19 and Chronic Illness in Taiwan Update: April 2020

Hey all. I have been pretty lax at updating here on My Several Worlds. Suffice to say that other events have been keeping me occupied, plus all of this is taking a huge toll on my health. I’ve written about pacing for health management in the past, but my pacing skills aren’t keeping me afloat during this. Today’s update describes a bit about life with COVID19 and chronic illness in Taiwan.

The global pandemic marathon with COVID19 started in Taiwan in January 2020. I’ve done my best to keep an even pace and keep things normal for myself, but I freely admit I’m struggling to keep a positive outlook. I’m very worried about my access to health care and medications. I’m also really worried for family and friends in North America.

I am trying to keep things upbeat on my IG page, so the first photo related to this post adheres to my indoor gardening green theme for the past week.Indoor Gardening with Plants During a Pandemic

For those of you who don’t know, I’ve been mostly housebound for many years and rely heavily on indoor zen activities from going crazy. Thus I’m not experiencing the cabin fever that is affecting so many people who are not used to having to stay inside.

That said, seeing people ignoring suggestions to wear masks and remain indoors is also extremely stressful and very distressing. I’ve worn a mask for years and depend on them heavily. I’m genuinely shocked by the debate about wearing masks.

Although I do not harp on this constantly, I have received messages asking me how things are going in China.

Guys, Taiwan is NOT a part of China!

I feel like I shouldn’t even have to say this! Taiwan also isn’t included in WHO and I’m gobsmacked by the people who keep following the advice of an organization that is politicized with its information. I trust the Taiwanese government and Taiwan CDC. I trust my president and her team here.

The response of Taiwan to COVID-19 shows exemplar leadership for the methods employed and the clarity of communication. Read up on how Taiwan’s government, Taiwan CDC, our health system, and the Central Epidemic Command Center (CECC) have worked together to keep the public safe.

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Anyways, on with my hospital update from Thursday, April 2nd and observations on life with COVID19 and chronic illness in Taiwan.

This was my fourth trip to the hospital during a global pandemic. Walking into the mouth of the dragon is getting increasingly stressful. Each time we visit we’re seeing escalated efforts by hospital staff to protect the public. Since January, all patients entering the hospital must have their temperature taken and they must spray their hands. You cannot enter hospitals without a mask.Hospital Response for COVID19

This time, we had to line up outside the hospital which is a first for me. My heart sank when I saw the line-up because I can’t stand for long. We were wearing our masks. Hospital personnel outside the hospital were in full protective gear, but they were making patients line up to fill in forms.

My decision when I got to the front of the line was to get my own damn pen out because I’m not touching the pen that you’re handing to everyone else to use!

This was the first time I encountered suspicious attitudes towards us. They were very suspicious of us being foreigners even though I had a specialist appointment slip. I am a frequent flier at the hospital and was not expecting to be grilled about my travel history. (They can easily check my health records which are synced in our NIH. They were not convinced we lived here.)

Meanwhile we are STANDING in a line with locals trying to push ahead of us. We stepped far away from the folks who pushed in front of us and the medical personnel seemed to pick up on our unease. I reminded the hospital staff that I’m a regular patient. In my head, I’m wondering how long I can stand here waiting for them to let us in before my legs give out. Patient Safety at Tzu Chi Hospital During COVID19 in Taiwan

I finally said very loudly in Chinese to look at our APRCs (Alien Permanent Residence Cards) which prove we are permanent residents of Taiwan and we have been here since 2006.

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Then they wanted to know where we work! That’s fine. I have no problem answering that and I understand that they want to know because they’re worried about workplace spread, but we’ve worked from home for many years. Additionally, my hospital appointment slip shows I’m chronically ill.

All in all, it was a wait and all I could think about was ‘Please let us in so I can see my rheumy and get the hell out of here!

They had us fill out paperwork but left us with the paperwork so what was the point of that? Temperatures were checked as we entered and I’d describe the hospital as controlled chaos.

Everyone was wearing a mask. You cannot enter hospitals or take public transportation without masks in Taiwan. Just this morning Taiwan CDC sent out a warning asking people to stay home and to stay away from tourist spots like Kenting.

COVID19 Masks Save Lives

We were hoping that this trip would give us some answers about my prescriptions.

I synced all my health info with Digital Defense Minister Audrey Tang’s app for the eMask rationing system – BRILLIANT. We are expecting our household ration of masks to be delivered soon.

One added benefit to adding this app was being able to view my blood work and lab results immediately. My labs are still high for inflammation. I don’t need my rheumatologist to tell me that. After 11 years with AS, I can read my own lab results now.

My question for my rheumy was to ask if he could to issue Enbrel and some of my other meds for two months so that I don’t have to make trips to the hospital.

In other words, I wanted to know if I could collect my May medications at my local pharmacy instead of risking a hospital visit every four weeks. A great number of other patients are allowed to do this for three months in Taiwan because of the pandemic.

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Unfortunately it was a hard no for me, partly because my health still isn’t stable and also because the hospital required payment upfront for Enbrel. They wanted 60,000NT for meds for April and May. So I have to go back next month! This seems insane to me.

To put a high risk COVID19 patient in harm’s way at the hospital every month because a pharmacy can’t process my meds for me is ridiculous. I have been growing increasingly concerned about my med supply and having to make these visits. I have no idea what will happen next month.

Anyways, I wore my cloth mask with a surgical mask over top and we tried our best to stay away from everyone. We waited outside while they got my prescription ready.

I held off on doing my Enbrel injection until after my hospital visit. It hasn’t kicked in yet. The stress from #COVID19 is getting to me and exacerbating my chronic illness flares.

So that’s that.

Lots of people here are still being really stupid about going out and not wearing masks. I haven’t been leaving home much – as usual – but I have a feeling after seeing so many people out for this long weekend for Tomb Sweeping Holiday that the government will have to make their strong suggestions to stay home and to wear a mask in public to a full out lockdown.

We have been living on the edge and running this damn marathon since January. It has been very hard to stay positive and to keep going. I’ve done my best to show a happy face with the photos of exhaustion hidden behind my first photo.

All we can do is keep on going.

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions in Asia. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for AS, fibromyalgia, and chronic illness by WEGO Health and Healthline.

2 thoughts on “Life with COVID19 and Chronic Illness in Taiwan Update: April 2020

    Joshua Samuel Brown

    (April 14, 2020 - 1:13 am)

    Dear Carrie, I’ve noticed your recent post specifically leaves out any mention of Tzu Chi hospital’s fine vegetarian buffet. As a fan of Taiwan’s buffet scene, I’d like to see more of this on your blog. Also, may I offer you some unsolicited medical advice based on something I vaguely remember reading Gwyneth Paltrow does? (Or maybe Gwen Stefani…she’s the singer from Black-eyed peas, right?) Anyway, one of the Gwens suggests colloidal silver enemas as a cure for unspecified problems. I asked my nurse for one and she charged me $50 extra. I didn’t have any cash so I gave her my credit card and haven’t seen her since. I’m still tied to the bed and beginning to suspect that the HotNurses website may have exaggerated her medical credentials. Can you send help? I am your biggest fan. Love, Joshua Samuel Brown.

      Carrie Kellenberger

      (April 27, 2020 - 4:32 pm)

      Ah, JSB! You are one of a kind! So there will be no visiting buffets of any kind while the world is on virus meltdown. We hit day two again of zero COVID19 cases, so I suppose it’s safe to go out now, but you know me, friend. I’m not much of a social person in general anymore. I’ve been isolating since before it became cool to isolate! Plus the thought of taking food from a buffet leaves me with the heebie jeebies. So does Gwyneth Paltrow’s Jade Egg! (Isn’t that just for moms?)

      Does anyone even read this site anymore? Doesn’t feel like it to me! Thanks so much for dropping by. Goodness, the situations you find yourself in, dear friend. STOP TRUSTING PEOPLE NAMED GWEN! If your nurse’s name is Gwen, I really think you should ask for a different nurse! I will try to get someone over there asap to release you. LOVE YOU!

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