Fibro-What? Kicking Fibromyalgia To The Curb (Not Really)

It has been a while since my last update. This post is for Invisible Illness Awareness Week, which starts on September 28th, 2015 and ends on October 4, 2015.

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. (Ankylosing Spondylitis, Fibromyalgia, and ME are my sworn enemies.)

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.

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!

Update from July 2016: Unfortunately, this didn’t last long. I was back to my old self and in January 2016, Dr. Lin told me that he didn’t think there was anything else he could do for me and he had me start branching out to other doctors at the hospital for help. With Dr. Lin (林孝義) at Taipei Veteran's Hospital

Anyways, on with my news.

This is part of my medical team at Taipei Veteran’s Hospital. My primary doctor, Dr. Lin (林孝義), is on the left. He is a leading expert in Rheumatology and Autoimmune illnesses in Taiwan. He is also the leading expert in Taiwan on Ankylosing Spondylitis.

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 very scary cardiac episode at the ER in Banciao. 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 infusion therapy for AS and my doctors at NTUH refused to admit that the medications they had me on since 2009 were no longer working. Not to mention that 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. I was finding it increasingly difficult to even get my point across with my doctors at NTUH.

I found out about Dr. Lin through a plea for help on Facebook while I was promoting awareness for Ankylosing Spondylitis through the Walk As One foundation in April and May 2015. A friend responded and soon enough, I was on my way to see Dr. Lin.

When I first started seeing Dr. Lin in May 2015, I was as sick as a person can be without requiring hospitalization. I had been experiencing severe chronic pain and autoimmune fatigue for seven months, as well as 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.

I know. Me? Depressed!Invisible Illness Week - Friend Ill Tip 8

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.

Fuck. That.

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 very, very 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 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.B and Me 2

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. 

Dr. Lin confirmed that AS was not the culprit behind my symptoms from December 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, Dr. Lin listened to me. He spent two hours with me during our first meeting and ran a bunch of tests, most of which revealed nothing.

I continue to be a medical mystery, just like many other Invisible Illness Warriors around the world.

I am a medical mystery, just like other Invisible Illness Warriors around the world. Click To Tweet

He diagnosed me officially in May with Fibromyalgia, Myofascial Pain Syndrome and Myalgic Encephalomyelitis (ME), also known as CFS.

Crazy, isn’t it! I had prepared myself to start infusion 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 had no hope and 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. My immune system simply can’t handle the daily onslaught of foreign substances that we are introduced to each and every day.

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’ve had to go back to see Dr. Lin every three weeks since May for blood and urine tests to make sure my kidneys and liver are ok from the drugs. His first rule of order was to alleviate my symptoms and then get me off the drugs.

Thankfully, Dr. Lin has been able to wean me down to eight pills a day, two of which are painkillers, but they aren’t nearly as strong or addictive as what I was on before. The stigma of being on these types of drugs, especially addictive 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 John come in with me and had him plead my case, and even then, my dear rheumy remained reluctant.

I’m happy to say that Dr. Lin gave me what I needed to start functioning again and I’ve finally started living life without daily painkillers, although I still need them throughout the week for breakthrough pain.

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.

I also subject myself to a lot of pain each day just because I don’t want to take them. I’d rather suffer the pain if it is manageable than pump more crap into my body.

Health care in TaiwanEvery 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 deemed me healthy enough not to have to go back until October!

My AS is in remission and he thinks I can manage a few months without dropping by every three weeks for them to test my blood. Who knows how long this will last?

Update: It lasted four months.

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.

I don’t really care what anyone else thinks of me in regards to what I have to do to live successfully with these illnesses. The only people I need to keep happy are me, John, my family (close friends included) and Dr. Lin, of course.

Thank you, Dr. Lin! I am profoundly grateful to you! (Special thanks to June Chen and her friend Johnny for putting me in touch with Dr. Lin.) Me and Mom

Oh, and especially my mom, for putting up with Sick-Me while she was here. I know it wasn’t fun for her to have to see me like that. I love you, Mom.

A Little More 

You can check out this article that Dr. Lin did with the Taipei Times a few years ago. The only thing I disagree with is the comment about more men having AS than women. That is simply not true.

According to the Spondylitis Association of America,

Similar numbers of men and women are affected with spondyloarthritis. In the past, it was thought that ankylosing spondylitis was more common in men than women. More recent studies suggest that ankylosing spondylitis occurs in similar numbers of men and women.

I’ve spent a lot of time on AS forums and on AS Facebook groups where the majority of people who are discussing their symptoms are women. Perhaps it’s because women present differently or they’re harder to diagnose. Who knows? All I know is that it’s important to dispel the myth that women do not suffer from AS as frequently as men do. I know too many women who are suffering and not receiving the treatment that they need because they are not receiving a proper diagnosis.

I remain forever more your steadfast and relentless Invisible Illness Health Advocate.

~Carrie

#AnkylosingSpondylitis #Fibromyalgia #CFS #invisibleillnesses #autoimmuneillnesses #healthadvocacy

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