My struggle with the severe and debilitating symptoms of Fibro aka Fibromyalgia and dealing with the health system in Taiwan as a Canadian expat. [Updated January 2021]
This post was written for Invisible Illness Awareness Week – September 28th, 2015 through October 4, 2015. I’ve looked back on this post many times since writing it. I was 10 months into my fibro diagnosis and I was existing, not living.
Fibro? What? What Happened in 2014
I’ve been so sick this year, there has been no time to do anything but focus on getting my life back on track.
I just started coming out of my eight month battle with these invisible illnesses of mine in early June and then boom, I got hit with another one and it has been a doozy of a ride. No one prepared me for what was coming. Doctors did not give me any further information, and I was so new to this, there were landmines scattered everywhere throughout my life that I was unaware of. When they blew up, I was barely able to hold on.
This blog is supposed to be about travel and cultures in Asia, but I haven’t had the strength or desire to write until towards the end of July, and by then, I had six months worth of work to catch up on. (I have written other articles on MSW about traveling with chronic illness and about being a chronically ill expat in Taiwan if you’re interested.)
If I’m being really honest, I haven’t been capable of any kind of travel in over a year. Just dealing with jet lag and getting through airports lands me in bed for weeks.
Life ground to a halt there for a while and I knew I had to fight to receive better treatment for myself in Taiwan or I was headed home for good. Well, the fight is still going five years later in 2021.
I’ve had to fight for everything – treatments, tests, for someone to believe me, then having to show visual proof of my invisible illnesses when my 13-year medical history and my labs and scans all show something is very wrong. It’s exhausting! I’m so tired, I can barely keep putting one foot in front of the other. Life shouldn’t be this hard. Patients shouldn’t have to fight this hard for help.
September 2015: I received some great news a few weeks ago, though, and I’ve been meaning to share it, but I’ve felt so good over the past three weeks, I put all of this on the back burner to go out and enjoy life. And really, that is what life should be about!
Fibro Update from July 2016:
Unfortunately, this didn’t last long. I was back to my sick self and in January 2016, my doctor told me that he didn’t think there was anything else he could do for. He told to start branching out to other hospitals for help.
I got dumped by ‘the doctor’ standing to my left in this photo. While he was at it, his medical advice also landed me in ER.
Stay away from Veteran’s Hospital if you want your fibro diagnosis to be taken seriously. If you’re going to this hospital, MAKE SURE you check interactions between all your meds, because the doctors don’t!
Anyways, on with my fibro fight and update!
In January 2015, we decided to switch doctors because we didn’t feel like I was getting the care and treatment that I needed at National Taiwan University Hospital. I wrote about my troubles with the health care system in Taiwan in January after a cary cardiac episode at the ER in Banciao at Far Eastern Hospital. (By far the worst hospital I’ve ever been to in every country I’ve been to.)
This episode happened because my doctors weren’t talking to one another or checking for drug interactions.
NTUH served me well for a while, but they were very hesitant to get aggressive with my treatments. Everything was a battle with them, including getting the medications I needed to get my life back on track.
I had finally resolved to start anti-TNF therapy for AS and my doctors at NTUH refused to admit that the medications they had me on since 2009 were no longer working. Sadly, it took three years to get those meds, and I don’t have coverage for them, so I’m paying out of pocket each month – $1,000 a month to stay out of my wheelchair. Doctors have still not recognized that the meds they started me on in 2009 are no longer effective.
I was finding it increasingly difficult to even get my point across with my doctors at NTUH. Dealing with a health care system in a foreign country, as much as I love Taiwan, is really scary when you can’t think straight. So I decided to switch hospitals. This was the first of several switches to find the right hospital.
When I first started seeing my new doctor at Veteran’s Hospital in May 2015, I was as sick as a person can be without requiring hospitalization.
I was experiencing severe chronic pain and autoimmune fatigue for seven months.
On top of that, I had horrible anxiety and depression from my conditions and from the awful side effects from the meds I’ve been taking to keep my immune system and pain in check.
No one ever told me that there was a relationship between AS and Fibro and depression.
Now that I’m a veteran patient, this is obvious, but for a newly diagnosed fibro patient, I found it so hard to believe that was I was dealing with was depression!
And yet that is what I was experiencing with the pain.
The only thing I’m going to say about depression now is that if you haven’t experienced it, it is very real and just horrible to deal with.
It’s not something you can get over.
The worst thing anyone said to me this year about my illness was, “Cheer up. If you try to be happy, you won’t feel so down.“
I have never felt more like scratching someone’s eyes out than I did during that conversation.
Depression is not something you ‘get over’. Illness is not something you can fix by putting a smile on your face. When you’re in agonizing pain 24-7 for months on end, it is hard to find happiness or joy in anything.Depression is not something you 'get over'. Illness can't be fixed by smiling. Click To Tweet
With that said, I did have some happy moments this year. My mom came to visit in May 2015 and while I feel awful that she had to see me like that, it was great to have her here.
We had some really great times together, including a long weekend in Hong Kong and some excellent meals from the night markets here in Taiwan.
Thanks, Mom, for putting up with Sick-Me. I know it wasn’t fun for her to have to see me like that. I love you, Mom.
And we got a kitten in January just before my birthday.
Her name is Bijoux, and as you can see, she has been a great source of comfort to me this year.
Another Diagnosis – Once you’ve got one autoimmune disease, you can expect another illness to join the group at some point.
My doctor at Veteran’s confirmed that AS was not the culprit behind my primary symptoms from December 2014 through June 2015.
Having been diagnosed with AS in 2009, I know my body well and even I knew that something was different about the pain and fatigue I was feeling. Thankfully, my doctor listened to me.
He spent two hours with me during our first meeting and ran a bunch of tests, most of which revealed nothing aside from elevated CRP and ESR which are blood inflammation markers. (Those markers have never gone down, not in over a decade.)
He diagnosed me officially in May 2015 with Fibromyalgia, Myofascial Pain Syndrome, and Myalgic Encephalomyelitis (ME), also known as CFS. Thus confirmed what NTUH had already told me in November 2014.
Crazy, isn’t it!
I had prepared myself to start anti-TNF treatments for AS, and instead, I came home with three new ‘friends’ to enjoy my life with.
Devastated does not begin to describe how I felt after receiving that news. I left that appointment in tears and cried so hard, I could barely walk. John and my mom were with me, but neither one of them knew what to say or how to talk to me.
I didn’t want to talk anyways. I just wanted things to stop.
There was no hope that month and I couldn’t see the light at the end of the tunnel. The following weeks were very, very hard to get through.
He also told me that day that I am one of those people that is allergic/sensitive to everything. I knew this. I’ve been through plenty of allergy tests and was one of those kids that got allergy shots every couple of weeks because I had over 200+ allergies at six years of age.
Most of them have continued and when I was tested again at age 25, the same allergies popped up. I’m extremely allergic to metals and chemicals, and I’m one of those folks that reacts to everything.
My immune system simply can’t handle the daily onslaught of foreign substances that we are introduced to each and every day.
What should I do about this, Doc?
He had no answers aside to put me on anti-depressants because he ‘sees a lot of young women like me’.
Yup, I got THAT line. I should’ve left right then and there.
At that time, I was taking 13 pills a day to manage my condition, one of which is used with cancer patients; two of which were heavy duty pain killers that were slowly leaching the life out of me while wreaking havoc with my liver, kidneys, and stomach.
I saw my doctor every three weeks since my May 2015 diagnoses for blood and urine tests to make sure my kidneys and liver were ok from the drugs.
His first rule of order was to alleviate my symptoms and then get me off the drugs.
That didn’t happen. I ended up on more meds than I should’ve been on as he got more and more frustrated with not being able to offer me relief. I suffered like a test guinea pig under his ‘care’. Cortisone injections into my spine. On Prednisone, off Prednison, add methotrexate, add this and that. It was just ridiculous.
The stigma of being on these types of drugs, especially painkillers, stays with me every single day.
People do judge, especially where prescription drugs are concerned.
I constantly feel the need to let my doctors know that I don’t abuse my medications. My first rheumatologist at NTUH refused to give me a stronger painkiller for the longest time. I eventually made my husband come in with me and had him plead my case, and even then, my rheumy remained reluctant.
Anyways, for a while we had some success with that doctor, but soon enough the pain was back and it was escalating. Things were really out of control.
Chronic pain is real, folks, and when pain affects every decision you make throughout the day and it affects your ability to get out of bed in the morning or to even take a short 15-minute walk, it IS devastating.
Every day I wake up and hold these little pills in my hand and wonder if I can get through the day without them.
Anyways, enough about that.
My great news is that on August 20th, Dr. Lin said I’m healthy enough that I don’t have to go back to see him until October 2015.
He concluded I was in remission and things were returning to normal. It lasted four months.
Then I got sick again, really violently ill and things started to slide downhill quickly. Shortly after that, he dumped me. Then I landed in ER at Far Eastern and that experience was so bad, I finally moved to Tzu Chi Hospital, which is where I’m still going to this day.
My life will never be ‘normal’ because of these conditions. I still suffer from chronic pain and fatigue because of the war that continues to rage on inside my body.
Life with chronic pain can change anyone, but I think the one true lesson
I’ve learned from all of this is to recognize that there will likely be more bad days than good days and to seize the good days and enjoy each day as it comes.