3 things I do to control the AS disease
I feel great! I am beginning to notice improvements here and there.
For one, I can toss and turn in bed pretty easily now. The pain and stiffness that used to make me hold on to the edge of the bed so I can turn to my side are gone. And I don't miss it at all.
But a few minutes ago, I did something that really made me feel the difference. I sneezed.
And it was okay. I did not feel that painful aftershock on my lower back which used to make me dread sneezing or coughing.
This prompted me to write this post and at least share what I have been doing differently the past few months.
I have been doing three things: eating, drinking and moving.
No drugs, except for the occasional Ibuprofen (last time I took one was two weeks ago). No supplements, except for salmon oil (last time I took it was also two weeks ago).
So here's my current diet: low starch, high protein, with a glass of chardonnay.
The low starch diet did not make me feel better overnight. I almost gave up on it after weeks of not feeling any relief at all. But I lost 8 pounds! And I wanted to lose a couple more pounds so I stuck with it. I'm glad I did.
Whenever I would feel back pains worse than usual, I also drink a glass or two of white chardonnay. Sometimes, I get carried away and drink more. But that's just me. Let me be clear on this though: I do not drink it everyday, okay? Only when I feel stiffness and pain creeping back again. And then I continue on with low starch diet.
Since I started feeling better, I started moving around more. I try to get up from my computer chair every hour and walk around a bit. I'm also using my elliptical trainer more these days. My husband looked for a low-impact workout equipment and this is what he bought it for me. Knowing him, who has all the patience in the world to read reviews and compare product features and prices, I'm sure this is a good one.
As you can see, there really is nothing special to it. The low starch diet was only hard in the beginning. Now, I think I have pretty much nailed it. And I will try to post some of my recipes to make it easier for you too.
Until then, stay healthy!
NSAID alternative?
I was looking for more information about alternative medicines to treat the AS disease when I came across Dr. Michael Eades blog. He talked about experimenting for himself a very interesting combination of krill oil, curcumin and ProOmega to obtain the same anti-inflammatory effect of NSAID pills.
"I take two ProOmega caps made by Nordic Naturals along with two krill oil caps (all krill oil originates in one place–Neptune Technologies–so they are all the same. Mine comes from Thorne.) along with a 500 mg curumin capsule (curcumin is a potent anti-inflammatory derived from turmeric). This combo I take the same way as I did the Advil: before if I remember; after if I forget. If anything it works better for me than the 800 mg ibuprofen without the potential for GI problems or heart attack. And not only does it not have the potential for causing these problems, it actually prevents these and many other disorders, so healthwise it’s really a win/win."Right now I am already taking 4g of Salmon Oil. I will try to add ProOmega caps and curcumin to the mix and see how it goes. Hopefully, this will make me stop reaching for those bad bad Ibuprofen pills.
Get moving!
I found these helpful videos of good exercise routines for people with AS.
It includes warm up, mobility, flexibility and breathing exercises. I now have it bookmarked and will make sure to do these routines as often as I can. We gotta move it, move it, you guys.
Go sweat!
It includes warm up, mobility, flexibility and breathing exercises. I now have it bookmarked and will make sure to do these routines as often as I can. We gotta move it, move it, you guys.
Go sweat!
There's hope in modern science
I have been researching about Ankylosing Spondylitis when I found this documentary on Youtube.
It is labeled as the World's First Osteotomy for Spine Deformity. Check it out, and know, that if all else fails, there is hope in advanced surgery.
It is labeled as the World's First Osteotomy for Spine Deformity. Check it out, and know, that if all else fails, there is hope in advanced surgery.
Drink up!
The more I read about Ankylosing Spondylitis, the more I feel disheartened.
I feel like it will take some major, major sacrifices and lifestyle changes to keep this condition under control. So imagine my delight when I came across this study from the American Society for Microbiology!
Wine actually kills Klebsiella pneumoniae which is the major suspected pathogen causing Ankylosing Spondylitis.
And to be specific, it's been observed that the white chardonnay seems to be the most effective, mainly because of its acidity.
Now this is a therapy that I will certainly try.
The culprit
I am feeling really down today.
I received some bad news on Tuesday and as it turned out, my eye problem is only a taste of a bigger health issue. I had hints and clues of this problem for many years now but I kept dismissing it as a common back pain. Now it has a name.
Ankylosing Spondylitis.
And what an ugly name!
When I was a child, I remember my mom having these back and hip pains from time to time. She never had it checked, so eventhough I'm pretty sure I got it from her, I am not sure of anything else. She is fine and mobile up to this day. She never had the Iritis. Does that mean mine is worse?
Now, my dilemma is whether or not to go on these treatments that the doctor is proposing -- Enbrel or Remicade.
I have no idea. The side effects sound worse than the disease.
And how about having a baby? How is this going to affect that?
I feel sorry for my husband. We are only married two years and just getting started on a family. And here I go with my health issues.
Too many risks to consider. My head hurts.
I'm afraid.
I received some bad news on Tuesday and as it turned out, my eye problem is only a taste of a bigger health issue. I had hints and clues of this problem for many years now but I kept dismissing it as a common back pain. Now it has a name.
Ankylosing Spondylitis.
And what an ugly name!
When I was a child, I remember my mom having these back and hip pains from time to time. She never had it checked, so eventhough I'm pretty sure I got it from her, I am not sure of anything else. She is fine and mobile up to this day. She never had the Iritis. Does that mean mine is worse?
Now, my dilemma is whether or not to go on these treatments that the doctor is proposing -- Enbrel or Remicade.
I have no idea. The side effects sound worse than the disease.
And how about having a baby? How is this going to affect that?
I feel sorry for my husband. We are only married two years and just getting started on a family. And here I go with my health issues.
Too many risks to consider. My head hurts.
I'm afraid.
Inching my way out of the woods...
Last eye exam went very well. My doctor was pleased that I'm responding to treatment quite nicely. And I'm very grateful that my resilient little eye is doing a great job in bouncing back to health.
But I'm not quite out of the woods yet... we have to slowly inch our way out. We have to gradually taper the med dosage every week. I'm down to 3x a day now. This is good considering I had to start with 10x a day. Like, every two freaking hours!
I know these eyedrops saved my eye, and I'm forever thankful, but I won't miss them when it's over. And I wish never to have this eye trouble again.
But I'm not quite out of the woods yet... we have to slowly inch our way out. We have to gradually taper the med dosage every week. I'm down to 3x a day now. This is good considering I had to start with 10x a day. Like, every two freaking hours!
I know these eyedrops saved my eye, and I'm forever thankful, but I won't miss them when it's over. And I wish never to have this eye trouble again.
Sights for sore eyes
Despite my left eye problem these days, I'm glad that I can still see on both eyes. So I'm posting these sights from our travels this month. Some of these I had only glimpses of, because my eye started acting up. But this is to remind myself that the world is a beautiful place to be, and how lucky I am to still be able to see it.
Dr. O
We went to the new eye specialist yesterday and we're glad to see that he is listed as one of the best doctors in the US. He's also one of the top ophthalmologists in 2011. We felt lucky to have him in the same state.
So we finally met Dr. O and he is great but oh-so-serious. He wouldn’t tell us anything until he had looked at all tests/scan/ultrasound/front-back-upside-down-eye-exam results (kidding, there’s no upside down!) But yeah, we almost had a heart attack just sitting there waiting!
Anyway, he confirmed that there is no permanent damage in my eye and he treated the remaining inflammation with an eye injection. I had to be really brave for that one!
A few minutes after the injection, it looked like someone just punched me.When we were finally walking back to the car, I started feeling like one of those toys with springed eyes that bounce all over the place. I had to hang on tight to my husband.
On our drive back, we thought that we will probably need some kind of therapy after this whole gruelling experience.
So we finally met Dr. O and he is great but oh-so-serious. He wouldn’t tell us anything until he had looked at all tests/scan/ultrasound/front-back-upside-down-eye-exam results (kidding, there’s no upside down!) But yeah, we almost had a heart attack just sitting there waiting!
Anyway, he confirmed that there is no permanent damage in my eye and he treated the remaining inflammation with an eye injection. I had to be really brave for that one!
A few minutes after the injection, it looked like someone just punched me.When we were finally walking back to the car, I started feeling like one of those toys with springed eyes that bounce all over the place. I had to hang on tight to my husband.
On our drive back, we thought that we will probably need some kind of therapy after this whole gruelling experience.
How it all began...
It was our first time to go on a cruise.
We were in New York City and supposed to board a ship docked in Manhattan Port that afternoon for an 8-day cruise to the Bahamas. We never made it to the ship.
A week before our flight to New York, I was diagnosed with a "pink eye". But only on my left eye.
For a few days, I religiously put my prescribed eyedrops. I wanted my eye to get past it before our trip. Saturday morning, when it was time to leave, I started to feel better and off we went to NYC.
My “pink eye” turned out to be a more serious eye inflammation that affected my vision.
Sunday night, I was in so much pain that my husband had to rush me to the Emergency Room. They put some pigment on my eye to look for any abrasions but they did not see any. The doctor sent us home with just another eyedrop prescription.
I woke up the next morning, unable to see anything with my left eye.
We sought an eye doctor. Somehow, in this busy city where we did not know anybody and without a laptop, my husband was able to find me one who would see me right away.
The good doctor tried to tend to me between his appointments. After a couple of hours of multiple eyedrops and eye examinations, he told us that this is a serious condition called Uveitis. We started crying in his clinic (and I still can’t recall this story without crying). It was the scariest moment of my life!
We had to go to a Retina Specialist immediately. This type of Retina Specialist is rare, comprising less than 1% of eye doctors, but our good doctor called up his colleagues and got us an appointment on the same day. We felt we were in New York City for a reason.
The specialist did several tests, prescribed us a bunch of eyedrops and pills, and advised us to stay in NYC so they can watch it closely. They only released us on Thursday, after they confirmed that I was out of immediate danger. The good news was that my right eye is fine, and my left eye seems able to bounce back. The bad news was that it would take 6-8 weeks for my vision to return to normal.
They found me another specialist in Columbus to monitor my progress, and another critical point would be after 8 weeks when they try to get me off the medicines because it may come back. Right now, some vision on my left eye has returned – it’s like looking at a fogged up mirror. I have to constantly check if it is getting better or worse.
On top of our medical crisis, it was also a bad week to be in NYC. Hotel room prices skyrocketed due to a couple of conventions and we had to move to a different hotel almost every night to get a more affordable room. And finally, we had to re-book our flights back to Ohio, and ended up flying to Dulles first and then Pittsburgh for a two-hour drive to Ohio.
But after all the chaos and the confusion and the many specialists, the main question remains... what caused this eye problem?
We were in New York City and supposed to board a ship docked in Manhattan Port that afternoon for an 8-day cruise to the Bahamas. We never made it to the ship.
A week before our flight to New York, I was diagnosed with a "pink eye". But only on my left eye.
For a few days, I religiously put my prescribed eyedrops. I wanted my eye to get past it before our trip. Saturday morning, when it was time to leave, I started to feel better and off we went to NYC.
My “pink eye” turned out to be a more serious eye inflammation that affected my vision.
Sunday night, I was in so much pain that my husband had to rush me to the Emergency Room. They put some pigment on my eye to look for any abrasions but they did not see any. The doctor sent us home with just another eyedrop prescription.
I woke up the next morning, unable to see anything with my left eye.
We sought an eye doctor. Somehow, in this busy city where we did not know anybody and without a laptop, my husband was able to find me one who would see me right away.
The good doctor tried to tend to me between his appointments. After a couple of hours of multiple eyedrops and eye examinations, he told us that this is a serious condition called Uveitis. We started crying in his clinic (and I still can’t recall this story without crying). It was the scariest moment of my life!
We had to go to a Retina Specialist immediately. This type of Retina Specialist is rare, comprising less than 1% of eye doctors, but our good doctor called up his colleagues and got us an appointment on the same day. We felt we were in New York City for a reason.
The specialist did several tests, prescribed us a bunch of eyedrops and pills, and advised us to stay in NYC so they can watch it closely. They only released us on Thursday, after they confirmed that I was out of immediate danger. The good news was that my right eye is fine, and my left eye seems able to bounce back. The bad news was that it would take 6-8 weeks for my vision to return to normal.
They found me another specialist in Columbus to monitor my progress, and another critical point would be after 8 weeks when they try to get me off the medicines because it may come back. Right now, some vision on my left eye has returned – it’s like looking at a fogged up mirror. I have to constantly check if it is getting better or worse.
On top of our medical crisis, it was also a bad week to be in NYC. Hotel room prices skyrocketed due to a couple of conventions and we had to move to a different hotel almost every night to get a more affordable room. And finally, we had to re-book our flights back to Ohio, and ended up flying to Dulles first and then Pittsburgh for a two-hour drive to Ohio.
But after all the chaos and the confusion and the many specialists, the main question remains... what caused this eye problem?
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