A.S. Face 0426: Nawfal

I have AS, and I’ve “suffered” with it since I was, oh, about 15 years old.

That would make it 32 years with AS.

I came across your website, The Faces of AS, and it is a great effort to bring the disease out and show who the people are with the disease – I wish you the best of luck with your efforts to gain more awareness about AS. I can identify with many of the people who have already put their stories up there, at your website.

I am a Nebraskan, was born and raised in Lincoln.

I deal with Ankylosing Spondylitis, Sacroiliitis, and after breaking bones in my lower spine, Spinal Fusion (in 2004):  These ‘conditions’ have been a way of life – it never leaves me alone – it’s a constant. Now, I live in Malaysia.

One of the worst things about having AS and living in the Tropics is the humidity, it is a killer for Arthritis sufferers. One of the best things about having AS in the USA, is that there were many Rheumatologists who were specialized to diagnose, treat and care for AS patients.

In the city I live in, there is basically one Rheumatology clinic where everyone goes – and I’m not thrilled with their treatment.  Perhaps some people are happy with the way their AS is treated here, but I’m sorry to say, I’m not one of them. Of course, they do the best they can with the overload of patients they have, it is crazy.

However, if I’m not happy with the AS treatment I’m getting, I stop going to the doctor – there is no point.  AS is not new to me:  I know what the doctors are going to tell me to do, and I also know what pills they want me to take, before they tell me. I’m not a candidate for any of the new promising drugs, like REMICADE and the others that are being offered.

The doctor I see here tells me, “Your AS does not appear to be very active, and eventually it will burn itself out.”  Must I say that when I hear that statement from a doctor, all I can do is laugh my A$$ off.  There is no such thing as AS burning itself out.

The damage done by AS to the body when it is MORE ACTIVE does not magically go away when it is LESS ACTIVE.  My so called ‘less active’ AS, over the last 5 days, had me not being able to sit, or lie down, for any length of time without having difficulty with massive pain and trouble breathing at times because of what I call, “pain spasms.”

I am indeed sorry if I am just a ‘little’ sarcastic when I discuss my more recent medical care and Ankylosing Spondylitis, because that is what my experience has been.  I hope that other AS patients receive steller medical care that is actually helpful. When the pain gets bad, and because the doctors have labeled my AS as ‘less active’, my only course of medication is Voltaren (diclofenac) and I have, on my own, discovered that Panadol Soluble works pretty good (actually), for speedier pain relief.

Another reason I rarely go see the doctors here about my AS is that when I do need medication, they usually give me 20 Voltaren tablets (50mg ea.).  And this is the ‘funny’ (so-funny) thing about the prescription the doctors give me relative to the time span between doctor’s appointments.  I receive 20 Voltaren tablets, and the time before I see the doctor again, is 3 months.  I don’t need pain medication every day, but I do need it often. Now, let’s do the math on the Pill to Appointment Problem:  If I’m having a really bad pain-episode from AS, like it has been over the last 5 day, I’ll take upward of 4 to 6, 50mg Voltaren a day (yeah, I know the max is supposed to be 150mg/day, but they didn’t consult AS patients when they came up with that figure).  If I take 5 tablets a day, I’ll run out of pain medication in 4 days.

The next time I could get pain medication that needs a prescription from the Rheumatology clinic, is almost 3 months away.  Amazing, isn’t it.  Therefore, when I need stronger pain meds, I have to go into the regular clinic and tell them I need pain meds for my AS, and they prescribe 20 more pills (the maximum the pharmacy will give at one shot).  The General Practitioners have heard of Ankylosing Spondylitis, but they don’t treat it, they only help me out by refreshing my pain pills, IF I need them. Please don’t get me wrong on the medical care here, in Malaysia, there are many world-class doctors and surgeons here.  I’m just saying that when it comes to AS, the clinic I have to go to, they have kind of placed AS patients into two categories:

1) Newer and MORE Active AS; and,

2) Long-time AS, and LESS Active.  According to their classification, I fit into category 2.

The feeling I have about this is, I’m on my own.  There’s not much that can be done.  Let’s have a Panadol Soluble Party! So, I pick myself up, do very light exercise to keep moving and to stay as limber as possible.  I “attempt” to stay away from the “trigger foods” that set off bad episodes (for me that includes cabbage, tomatoes, potatoes, eggplant, tomato paste, yellow dal, and others).  I say “attempt” because I love those foods – what a big-fat-bummer!  I also take pain medications when I need it.  One of the best things I can do for myself is to keep myself in a positive state of mind – and that is tough, I admit, some days. I wanted to let you know that I recently wrote a book and self published it.  My book covers several topics that are very beneficial to anyone suffering from chronic pain and depression.  My book is not only an Art Photography book, but it also covers many aspects of, and details about, Living with Chronic Pain (in my case, Ankylosing Spondylitis) and Dealing with Depression (which can, unfortunately, affect AS patients). I wrote this book to bring awareness about Depression and Ankylosing Spondylitis to a broader audience.  I also wrote it to showcase my Smoke Art Photography.  You can see the description page of my book at the link below:  My book is both in print form (paperback), and as a downloadable ebook version.  As mentioned, I published my book at LULU.com.  My readers have told me that the print quality is excellent. The title of my book is:  ETHEREAL DREAMS & HOPE:  A Photographic Collection with Words to Boost Your Spirit.  I exhibit my smoke art in this book.  I also share some of my experiences with Ankylosing Spondylitis, and Depression.  I use “HOPE” Quotations along with each photograph, as a way, if nothing else, to help the reader who suffers from AS, or Depression (or both), to begin thinking in new ways, or ways to help themselves deal with their condition(s). I have discovered that I have had to do a lot of self-maintenance and I have read my own book many times.  Each time I read it, I find something that helps me think in a new light, so I’m not stuck in a “depressed and painful place,” at least, not all the time, and certainly not, forever. Please go to the link below, have a look at the description and the “Preview” of my book (there’s a link there), and if you feel that it may be helpful to others who visit your site, then I would appreciate you sharing my link with others people with AS. The main goal I had in writing my book was to reach out and touch others who suffer from chronic pain and depression.  I thought that my photographs of smoke and the Hope quotations I have in my book, would be helpful to others. http://www.lulu.com/shop/nawfal-johnson-nur/ethereal-dreams-hope-a-photographic-collection-with-words-to-boost-your-spirit/paperback/product-17497067.html

Thank you for your time in reading this, it is very long, but I wanted to share a little bit about myself, my experience with AS, and the work I have done to get the word out about AS and Depression.

My Best Regards, Nawfal

Nebraska Born.. Lives in Malaysia


3 Responses to “A.S. Face 0426: Nawfal”

  1. great story – thanks! Malaysia? Why on earth would you move there from Nebraska!? LOL! Best of luck to you and peace!

  2. Dear Nawfal,
    Thank you so much for sharing your story with us. Thank you for being so honest and open about your dealing with AS and the medical field. I look forward to reading your book.
    Sincerely Cookie

  3. I look forward to reading your book..Thank you for sharing your story. Face 424.

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