People around the world are ‘celebrating’ World Ankylosing Spondylitis Day today in an effort to raise awareness about this horrible and painful autoimmune disease. This is a disorder that affects millions of people and I am one of them. If my story here helps one person, then it has been worth it. There is no need to suffer silently with this disease.
I was diagnosed with an autoimmune disorder called Ankylosing Spondylitis in February 2009 after suffering from a variety of strange symptoms over a span of ten years. I might not look outwardly sick, but inside my body there is a maelstrom being waged each and every day. My body is in a systemic and chronic cycle of inflammation, and there is no escaping it.
If you’re looking up Ankylosing Spondylitis right now, you’ll read that this is a type of inflammatory spinal arthritis, but AS isn’t the type of arthritis that you get from old age. AS is juvenile arthritis, and it’s a reactive and chronic autoimmune condition that is similar to Rheumatoid Arthritis. An autoimmune disorder, by the way, is a condition that occurs when your immune system mistakenly attacks and destroys healthy body tissue.
The exact causes of autoimmune disorders are not known, but scientists believe that the risk factors include genetics, environmental factors, gender, sex hormones, and infection.
My condition seems to be related to a predisposition for auto immune disorders within my family. My paternal grandmother, my father, my mother, and my brother all suffer from autoimmune illnesses. I’ve read that a family’s susceptibility to autoimmune disorders may be linked to common environmental factors. (The Auto Immune Epidemic). Environmental factors such as constant exposure to heavy metals and the chemicals that we pump into our environment are thought to play a vital role on the development of autoimmune disorders in the past one hundred years. When you stop to think of everything that we are exposed to on a daily basis from genetically modified foods to fresh produce that is coated in pesticides to the chemicals that we spray on our lawns or the chemicals that cling to your dry-cleaned clothes, it’s not hard to see that there is a connection.
All I can tell you is that more and more people are developing auto immune disorders each and every day. This includes diseases like Lupus, Crohn’s disease, and Celiac disease-sprue, to name a few.
More than 33 million people around the world suffer from AS.
In 2009, shortly after I fell ill for no apparent reason, the doctors at National Taiwan University Hospital were able to offer me a diagnosis, and within a year my condition became ‘manageable’. But my life still consists of constant visits to the rheumatologist, regular blood work, and a host of medications to keep the worst of my symptoms at bay.
I still get hit with bouts of inflammation that stick around for months on end. It typically starts with swelling in my knees and hips, but it has also been known to affect my hands, feet, eyes, neck and shoulders.
In 2011, for example, my knees and hips started swelling a few hours before I boarded a plane to Hong Kong, and by the time we landed, I had to be brought off the plane in a wheelchair. My husband ended up pushing me around in a wheelchair all weekend. It wasn’t a very nice vacation.
I don’t know if you noticed that I wrote that my doctors have managed to treat my symptoms. There is no cure for AS and all the other autoimmune-related problems that I experience on a daily basis. Furthermore, I will eventually have to progress to the next class of drugs at some point, none of which have good side effects. In fact, the side effects I experience from the drugs I take to keep the inflammation at bay are really horrible.
My Symptoms and Complications Related to AS
These are just a few of the symptoms that I’ve experienced over the past decade:
- Severe edema – I’ve had both knees swell up to the size of bowling balls.
- I’ve woken up and been unable to lift my arm more than a few inches.
- I’ve experienced excruciating back pain that keeps me bedridden for days.
- I’ve lost the ability to put any weight on my foot.
- My hips and thighs develop a sensation that is akin to being stabbed with a sharp stick over and over again.
- I’ve had strange skin rashes, horrific ear infections, and eye infections.
- I have suffered from stomach problems off and on for the past year.
- I suffer from extreme fatigue.
- I suffer from bouts of extreme depression.
- I’ve gone through months of debilitating and chronic pain that has left me unable to walk without the aid of a cane or wheelchair.
- Sciatica pain
I’ve tried everything to try and reduce the chronic and systemic inflammation that I’ve been experiencing. I’ve tried different kinds of medications, I’ve done detoxes and elimination diets. I switched to an anti-inflammatory diet in November, and I still didn’t have any success in alleviating my symptoms.
One bout of AS related complications started in early October 2012 and progressed through to early March, and despite my best efforts to bring things under control, my symptoms continued to worsen through November and December 2012.
My ears, in particular, have given me an enormous amount of trouble. I was going through a vicious cycle of having my ear canals swell and weep with infection and then the skin would dry up and crack. This was happening every six days for six months. It really affected my hearing. This spread to my eyes in January 2013, and that’s when I really started to get worried.
In late January, chronic fatigue set in and I was just miserable. Fatigue is a major complaint among patients with inflammatory rheumatic diseases, and it can be related to things such as loss of sleep from physical discomfort. It can also be a by-product of the disease itself. When inflammation is present in your body, your body uses enormous amounts of energy to deal with it. It took me hours to get going in the morning. My alarm would go off and I’d lie in bed waiting to have enough energy to get out of bed and get a start on my day.
Shortly after Chinese New Year in February 2013, I was ending every single day in tears. It was just exhausting. A good friend of mine, who worked as an acupuncturist and Chinese herbal medicine doctor in the States, suggested that I go to see a famous Chinese medicine doctor in Taipei by the name of Dr Lee Chen Yu.
Dr Lee is famous for successfully treating a number of brain and spine diseases such as stroke and cerebral palsy. He has also been very successful in treating people with chronic autoimmune illnesses. This was not my first time seeking out help from a TCM doctor. I was treated with acupuncture in mainland China for AS complications in 2003, but I didn’t find that the treatments helped. I also had an experience with cupping and scraping in Taipei in 2007. (Click on the links to read about my experiences and view photos from those sessions.)
I have run the gamut in terms of treatment options, and Dr Lee was the only person left that I could turn to for help.
My Treatment Plan with Dr Lee Chen Yu
My first treatment with Dr Lee began on March 4, 2013. Dr Lee’s office is on the 4th floor of an old building that smells like it has been permanently doused in herbal solutions. The front room houses an old beat-up desk and a long counter with staff busily measuring out different kinds of herbs on old fashioned hand scales. The herbs are then funneled into a special bag that is used to steep the tea. To the right of the front door, there are several narrow cots laid out for acupuncture treatment. The smell of burning incense is strong, but it does nothing to detract from the overwhelmingly musty smell of steeped herbs. It’s a pungent smell that immediately sets my stomach off in spasms of queasiness.
I describe my problems to an American who has been studying with Dr. Lee for eight years. Doctors come from all over the world to study with Dr. Lee. The man who is helping me is just one of about half a dozen foreign doctors in the clinic. The doctor is very patient with me as a I bring him up to speed on my medical history. He tells me that they had successfully treated other patients with AS, and that gave me pause for thought. I was there to relieve the pain and inflammation that had developed in my eyes and ears, and this man was telling me that they could not only help with my eyes and ears, but they could also get me off my AS medication completely.
Then I meet with Dr. Lee. He seems like a kind man, and he’s got a great rumbling laugh that immediately makes me feel comfortable with him. We go over my symptoms with Dr Lee as he looks me over and measures my pulse with his thumbs. He tells me that all of my problems are interconnected and asks me to begin treatment immediately. He tells me will take a long time and asks me if I’m ready to commit.
I say yes, and he begins to outline my treatment. I’m to drink his herbal tea three times a day and then take a round herbal pill once a day. My physical treatment begins immediately with bleeding and acupuncture. Yes, you read that right.
What follows can only be described as an unpleasant experience. The treatment begins with bleeding. He starts by pricking the skin in front of my swollen ears twice with a pin. He then places a suction over the pricked area and draws the blood to the surface. Then he does this again at the top of my spine, on the inside of both wrists, and on the back of my knees. This, they say, helps to open up the meridian lines and draw out inflammation.
Next, the acupuncture treatment begins. Two needles are placed in the back of my head under my cranium, two in the tender part of skin between my thumb and forefinger, and two behind my knees. I experience immediate throbbing and discomfort, but only on the left side of my body. He leaves me there for 20 minutes. When the needles are taken out, the doctor pushes hard on those spots and then asks me to sit up slowly. I am immediately lightheaded. It felt like the room was moving away from me. Then I felt overwhelmingly tired and I wanted to cry. He asked me to sit for a few minutes and try to relax.
I leave while they are brewing my medicine and they tell me it will be delivered that evening. Since Dr Lee’s treatments aren’t covered under my National Health Insurance plan, I end up paying NT$4800 ($160USD) for my first session and a week’s worth of tea.
The following week, I go back to the clinic for more bleeding and acupuncture. This time, I feel like I am going to throw up. The smell of incense keeps my stomach rolling for the duration of my visit, but when I sit up after the treatment is finished, I feel completely energized. I was up until 5am that day. I had so much energy that I ended up rearranging the kitchen cupboards until the wee hours of the morning.
I’m starting to suspect that acupuncture might not be a good treatment option for me. I’ve read that people who suffer from auto immune disorders can react in wildly different ways with acupuncture. It seems that I’m one of those people.
Meanwhile, my symptoms are getting much worse. My entire body was in overdrive. The inflammation within my body was being drawn to the surface, and I barely had enough energy to leave the house.
My third week of treatment came and went with similar results. This time, the acupuncture treatment was extremely uncomfortable. When I got home, I was feeling really emotional and overly fatigued. I got home at 5pm and slept through until 9am the next day.
After discussing things with my husband, we decided that I was just too sensitive to acupuncture, and I decided to forgo that portion of the treatment plan and focus on drinking the tea three times a day.
Let me tell you, the herbal tea that I have to drink is the worst thing I’ve ever had to ingest in my entire life. It’s like drinking dirt. I have a very hard time keeping it down. Even now, six weeks later, I’m still having a hard time keeping it down. It’s a force of will to drink this stuff every day.
The tea makes my stomach extremely upset, and I feel queasy all the time. Certain smells sent me running for the bathroom. I wanted to quit from day one. It was really, really difficult for me to spent NT$4,800 a week on something that was making me so ill. I was just miserable, but the alternative was worse. I kept telling myself that I must be crazy to spend that much money on bleeding, acupuncture and medicine that makes me violently sick, but I could tell that my symptoms were starting to improve towards the end of Week Three, so I stuck with it.
By the end of March, I had spent NT$24,000 ($800USD) on medicine and doctor visits in the month of March. NT$20,000 went to the clinic, the rest of it went to my regular doctor appointments.
By Week Six, I started to notice a huge improvement in my energy levels. The inflammation was down everywhere in my body, my ears were almost back to normal, and I was able to go back to the gym.
My ears haven’t been this clear in over two years, and the skin rashes and eye infections are starting to slow down as well. Has the NT$40,000 in cash that I’ve spent on my treatment been worth it so far? In some ways, yes. I am noticing an improvement in my eyes and ears, and I’ve had more energy, but the problems I’ve had with my stomach haven’t been worth it.
Now it’s May and we’re here at World AS Day, and I have to say that I’m feeling pretty good overall. I’m thankful that I stuck with the treatment that far, but during week nine, my husband and I decided that I should stop seeing Dr. Lee due to the fact that his teas were making me violently ill. My plan all along has been to pursue a plan that is covered by my insurance.
I have started seeing a doctor at the Taipei Chinese Medicine Hospital in Ximending. My visits and medicine are covered under Taiwan’s National Health care system. I pay NT$140 per visit and I’ve been seeing him since May. I take the medicine in a powder form, and haven’t experienced as much stomach discomfort. My doctor at the hospital speaks perfect English and he’s got the best bedside manner of any doctor I’ve met in Taiwan. He is also the only doctor to date that has actually touched my back during a flare to assess where the pain is located. I’ve been seeing him since May and I’m happy with the care I’m receiving although I’m not experiencing the bouts of energy that I had during my treatment with Dr. Lee.
I try to get to the gym regularly, but I’m still trying to learn my boundaries between too much exercise and the right amount. I’ll be able to do an hour of light yoga one day, for example, but power yoga sessions tend to hit me a day later and almost always put me into a cycle of inflammation. Some days I can jog, other days I can’t do more than 20 minutes on the bike. If I’m feeling fatigued in the slightest bit, I don’t go to the gym. And I’ve really started to notice a difference between good pain and bad pain. That’s key to working with this disease.
My rheumatologist believes that this is because my disease is progressing. I’ve recently been diagnosed with fibromyalgia, and he wants to bump me up to the next level of drugs. That means going off of NSAIDs and going on steroid use – something that I’m really opposed to. Once you move to that level of treatment, there’s no going back, but with the number of symptoms that I’ve developed over the past six months, he feels it’s only a matter of time that this happens. Right now, I feel that I’m staving things off with the Chinese medicine. My ears and eyes have continued to improve, but the pain in my joints and muscle tissue has continued to yo-yo.
Seeing a TCM doctor has had its ups and downs, and while the treatment was harsh to begin with, I am happy with the results. Traditional Chinese medicine might not be an option for everyone, but so far, it has worked for me. The improvement in my ears and eyes alone has been worth it.
AS sufferers around the world will probably agree that relief of any kind from chronic pain and inflammation is a veritable gold mine and it’s meant to be cherished. You never know when life is going to give you a kick in the pants, and I’m determined to live mine to the fullest until the day that this disease rears its ugly head once more.