The Ears Hear…Kinda – My Journey with Ankylosing Spondylitis

I haven’t written much about my health lately, only because I felt like I was boring everyone to tears. But, I keep getting emails from friends and family inquiring, so I figured I’d better give y’all an update.

My hearing problems began almost a year ago this week. I still can’t believe the course it has taken over the past year. I swear, my doctors must be really happy to see me because I’m sure my bills alone keep them in business. I still see a doctor once a week, but my immune system is up and I’ve got my strength back. I never realized before how sick I was until I was able to start comparing it to how I feel now.

My ear drum is healed but my ear canal is still a mess and the infection comes and goes. I still can’t get through a week on my own without seeing Dr. Mao. It’s always a huge relief when I walk out of his office after each appointment.

Last month, I started to get really worried, as this is taking months to clean up. I finally told Dr. Mao that I’m getting married in Mexico in December. I will be home in North America for seven weeks and I’m absolutely terrified of being away for so long because I can’t get in to see a specialist back home. Then I made a few half-serious jokes about bringing him to the wedding.

Dr. Mao has been great, and he assures me that he will do his very best to send me home safe and healthy. He was also honest enough to admit that I need to get in contact with some doctors back home just in case. On his recommendation, I called my home physician in Canada and had him try to get me on a waiting list to see an ENT when I get back.

My biggest news is that I finally came off the medication that I’ve been on since April. Let me tell you, it’s a relief not to pop pills in the morning. The adverse effect though, obviously, is that I’m realizing how much discomfort the pills were masking. However, being off the pills means we’re finally getting somewhere, so I’ll do anything to stay off them.

Now I have to get my head around not being able to engage in any water activities ever again. Back when we booked our beach wedding, we dreamed about all the wonderful things we’ve always wanted to do together. Two of my biggest dreams have been nixed this year. I’ll never scuba-dive and I won’t ever swim with giant sting rays. Things like snorkeling, swimming, waterskiing, jetskiing, all these activities that I’ve enjoyed all my life are now things I can no longer do. Wearing ear plugs is completely out of the question. Washing my hair is a chore and we figure we should buy interest in cotton, considering how much I have to use to keep my ears dry.

But I keep telling myself that this will all be worth it if I don’t ever have to go through what I went through back in April. I’m going to follow my doctor’s advice and be smart about all of this. Hopefully, by the time Christmas roles around, this will all be behind me.

Health update: It turns out that this was a warning sign of things to come. I was diagnosed with Ankylosing Spondylitis less than six months later, and all of these problems are a direct result of the disease.

21 thoughts on “The Ears Hear…Kinda – My Journey with Ankylosing Spondylitis

  1. Stevo

    I’m glad your feeling better. Being ill, especially far from home or comfort is extremely difficult. I had a health crisis two years ago. That took 8 months to diagnose and clear up.

    Be diligent and take care. I’m sure your wedding will go off without a hitch.

    Reply
  2. Krzysztof

    I had the same problem as you. Everything will be alright if you are consistent. I know that this must be very onerous to see your doctor so often. I like my doctor but I’ve never liked things which she has done with my ear. Now I have relative peace. I’m sure one day you will have it too. I’ve no doubt it will be earlier than in my case because I wasn’t as consistent as you.

    Reply
  3. MJ Klein

    thanks for the update Carrie. glad to know that things are progressing. i’m concerned about why your general health was so bad in the first place, however. also, why can’t you use earplugs?

    these days they have dry suits with full helmets. you could go scuba diving in one of those rigs and you’d be toasty dry the entire time! so, it’s not completely over for you.

    take care.

    Reply
  4. Michelle G

    Carrie, I am glad to hear you are getting better. I have been fighting with my asthma this year as well. There are days I am in pain and others I am fine. I’m just glad I date a nurse, because he takes very good care of me.

    Reply
  5. Kim

    Good to hear that you’re no longer dependent on medication, hopefully you’ll soon be released of doctor visits as well. Is there really no hope for a permanent cure?

    Reply
  6. Carrie Post author

    Thanks Stevo. That’s what we’re hoping. It would also be really nice to take along my personal health care professional as well though! :-)

    Reply
  7. Carrie Post author

    Hi K,

    You’re absolutely right. Onerous is a perfect choice of words. Every day gets a little better. It amazes me when I think back to when this started. I had no idea it would take so long.

    Reply
  8. Carrie Post author

    Hi MJ,

    I’m not sure why. The doctors believe there were a number of mitigating circumstances. The pollution here in Taiwan doesn’t help…ears, nose and throat are all affected equally here, so when one starts, the others follow. I also tend to burn the midnight oil and I squeeze absolutely every second of my day. I’ve had to learn to slow down a bit this year.

    Ear plugs, bathing caps and tight fitting hats are all out because the steriods and hydrocortisones I’ve been using to battle the middle ear infections have wreaked havoc on the tissue in my ear canal. Whenever I try to insert ear plugs or wear a swim cap, my ear swells up and the skin gets irritated. This even happens if I use cotton q-tips too often. Basically, I can’t put anything in my ear or have anything on my ear. Even wearing headphones (not earbuds!!) at the gym has been known to cause problems.

    Reply
  9. Carrie Post author

    Ah Michelle! You are lucky! John’s a good nurse, but he’s been dealing with this for a year and he knows I don’t need pampering anymore. :-( I remember you being quite ill in China. Was it because of the air pollution or was it something else?

    Reply
  10. Carrie Post author

    Hi Kim,

    I spoke too soon. I was at the doctor yesterday and he decided to put me on another course of pills. These ones were a bit different….I think they’re antihistamines. They knocked me out cold for 12 hours! Needless to say, I’m not going to follow this course of medication. I could barely stay awake at work yesterday.

    In answer to your other question, yep, this is something I’ll have to deal with forever, but I’ve already been dealing with it since I was a little kid, so that’s nothing new to get used to.

    Reply
  11. Carrie Post author

    Hi Matt,

    Thanks for your well-wishes. I haven’t forgotten about you and I’m hoping that with a little more time, I’ll have something out to your shortly. :-)

    Reply
  12. Cris

    Hi Carrie,
    I do believe that energy heals and thoughts are full of energy.
    Everyone here wishing you to get better will make a difference and will help you to get out of this.
    I am also sending my little part of healing-energy for you!

    Reply
  13. Anthony van Dyck

    Hi Carrie,

    Sorry to hear about your ear problems! I can empathize, because I blew my eardrum out a few years ago. Word to the wise: Never go scuba diving with a sinus infection. To this day, I still only have 40% hearing in my right ear. Fortunately I can get away with saying “Eh? Eh?” a lot because people just assume I’m being especially Canadian! ;) Anyway, I was wondering if you could send me the contact information of your Dr. Mao. You seem to be pretty pleased with his treatment of you, and I’m wondering if there’s anyway I can get some of my hearing back.

    Thanks, Anthony

    Reply
  14. Ashish

    Hi Carrie. I’m glad everything is fine with you now. I can’t possibly imagine how painful it must have been for you to go through all of this. Take good care of yourself. The big event is coming. Wish you all the best and good luck.

    Reply
  15. Mia

    Sometimes things happen this way and you learn to experience things in new ways. Having to keep your ears dry and not being able to swim anymore means finding a new way to enjoy the water that will allow you to protect your ears.

    Reply
  16. Carrie Post author

    Anthony,

    I’ll definitely take your advice. There will be no scuba-diving for this lady. My ENT is located at #234 Shintai Road in Hsinchuang City. Good luck. I hope you have success in getting some of your hearing back!

    Reply
  17. Carrie Post author

    Ashish,

    I’m glad to see you back and I heard yesterday (from the Bushman) that congratulations are in order! I’m really looking forward to meeting you in person at the Miaoli bash.

    Reply

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