ANKYLOSING SPONDYLITIS

Oh I Almost Forgot to Toot My Own Horn Again, But I Suppose it Would Be Good to do that 

I was featured in the December 2017 issue of URBAN HEALTH MAGAZINE.  December is almost over with, but not quite, so I will still mention it.

The article covers my life with my Art Photography, my life with Ankylosing Spondylitis (AS), a VERY long, lifetime degenerative joint, arthritic, autoimmune disease.  The article also touches on my life struggling with chronic depression and how I focus ALL (much of it) OF THIS PAIN into my Art Photography.  

You can get the magazine in Malaysia and probably Singapore.

Here is the cover and first page of the feature story.  The article may be of some comfort to anyone suffering with AS and Depression…perhaps.

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This is what IRITIS Looks Like

IF you ever wondered what IRITIS Looks Like, It is like this (see the photo):

"My Eye on Iritis!" Day 3 Iritis, 19 APR 2013, IMG_0915, EDIT E, NJN667. Copyright by Me.

“My Eye on Iritis!”
Day 3 Iritis, 19 APR 2013, IMG_0915, EDIT E, NJN667.
Copyright by Me.

I sit here and ponder life.

Well, being that I have Iritis AGAIN, for the umpteenth time, I am not even supposed to be at the computer:  I don’t make a very good patient.

I guess I feel obligated to share any information I can with other people who suffer from Ankylosing Spondylitis (AS), because one of the possible complications you may face during your life’s struggles with AS, is dealing with eye problems, which seem to go together with AS.

First, if you are new to AS, you can find a lot of information about this Spondyloarthopathy disease at the American College of Rheumatology , or, from the Spondylitis Association of America !  Both are great resources for AS information.

Second, if you are new to having AS, and you have never had Iritis before, you need to be VERY AWARE of your symptoms, because if left untreated, Iritis can lead to blindness.

The main reason I go through the PAIN of taking photos of my affected eyeball is so that anyone coming to my blog for Iritis information will be able to see what an eyeball with Iritis can look like.

THUS, if your eye looks like mine (in the photo above), and you also have some or all the following symptoms, you may have Iritis:

  1. Eye feels “heavy”.
  2. Eye looks bloodshot.
  3. When you close your eyelid and touch around the eye, it is painful to the touch (even the smallest bit of pressure).
  4. Photo-phobia:  Very sensitive to light – especially sunlight (light causes pain).
  5. Looking at things close-up is very painful.
  6. Throbbing pain in the eye.
  7. If the affected eyeball’s pupil is smaller than the non-affected eye – THIS IS SERIOUS ALREADY – GET MEDICAL HELP NOW!

Symptoms can change rapidly (for the worse) with Iritis:

By day number three, this time, my iris was stuck (inflamed badly).   Thus, in number 7 (above), when the pupil does not get bigger, smaller, or change at all in different lighting conditions, then your iritis is very bad already and you need medical help.

In medical terminology, here is some information from iritis.org:

Iritis is inflammation predominantly located in the iris of the eye. Inflammation in the iris is more correctly classified as anterior uveitis.  The ciliary body can also be inflamed and this would then be called iridocyclitis.  When the iris is inflamed, white blood cells (leukocytes) are shed into the anterior chamber of the eye where they can be observed on slit lamp examination floating in the convection currents of the aqueous humor. These cells can be counted and form the basis for rating the degree of inflammation.  [Source:  http://www.iritis.org/index.php ]

In short, it is ‘like’ Arthritis of the Eye.

So, I am here pondering life.  In addition, if you are having an Iritis flare-up, then you should stay away from the computer as much as possible.  IF you need to be at the computer, then be disciplined:  Work for one hour and then rest for an hour.  If you do not rest your eyes, the condition can last longer, and you may develop Iritis in the other eye (the “good” eye)…this has happened to me before so I know it is true.

It is time to get away from the computer.  I’ll have more Art Photography posted here soon:  I have started a new Abstract series and I am enthusiastically hoping to show it here…when the eyeball permits.

 

ETHEREAL DREAMS & HOPE – THIRD EDITION

ETHEREAL DREAMS & HOPE:  a Photographic Collection with Words to Boost Your Spirit - Third Edition, by Nawfal Johnson Nur

ETHEREAL DREAMS & HOPE: a Photographic Collection with Words to Boost Your Spirit - Third Edition, by Nawfal Johnson Nur

A Shout Out for – The Feeding Edge & Art Apple A Day

Hi!

I wanted to let you know of a couple of sites that you should visit! I mean, I highly recommend that you go visit these sites – one is a facebook page, The Feeding Edge & Art Apple A Day, and the other is a website/ART Blog, THE FEEDING EDGE.

These are sites run, produced, created and operated by a new friend, Jennifer Dye Visscher.

Jennifer has created these Internet Pages, as a way to get the word out there, about Ankylosing Spondylitis (AS), Health Advocacy, Positivity, and of course, her beautiful art.

Jennifer has created a wonderful platform to reach out to the public: She is doing an artwork a day project and this has been going on for the better part of a year. This project is called, “a daily art apple for Ankylosing Spondylitis awareness.

You see, Jennifer and I both have AS, so I know how important her project is, so I want you to be aware of it. Please visit her sites; you will enjoy seeing her apple artwork, which is quite amazing and beautiful. In addition, you will learn some new information about AS.

Thanks!

5-Foods to Avoid if you have Arthritis

This is post 250.  I guess 250 is a blogging milestone.

I thought I would quickly mention a few of the foods that cause my arthritis to flare-up.  Perhaps these foods also affect you.

I will start with the Nightshade family of vegetables that cause me the most pain the day after eating them.  Unfortunately, I love many of the nightshade veggies; but they are killers for my Ankylosing Spondylitis.

NIGHTSHADE VEGETABLES TO AVOID

The connection of nightshades and arthritis-type disorders was brought to the forefront largely by the efforts of Dr. Norman F. Childers, former Professor of Horticulture at Rutgers University. Dr. Childers knew first-hand the affects of severe joint pain and stiffness. He discovered that after consuming a meal containing any tomatoes, he experienced severe pain. As his interest in the inflammatory responses to nightshades grew, he observed livestock kneeling in pain from inflamed joints – the livestock had consumed weeds containing a substance called solanine. Solanine is a chemical known as an alkaloid, which can be highly toxic. [SOURCE: http://www.leakygut.co.uk/Hidden%20cause%20of%20inflammatory%20disorders.htm]

I really like tomatoes, potatoes and eggplant – but they do not like me!  Of the three, potatoes are the most difficult to stay away from – I mean, who doesn’t like French fries or potato wedges?  Oh well, I do my best to stay away from these foods.

CRUCIFEROUS VEGETABLES TO AVOID

  • cabbage
  • cauliflower

I do not know why, what scientific reasoning there is behind these two veggies, in particular, that cause me more pain after eating them.  I’ve seen some reports on the Internet that say that these foods, cabbage in particular, may be beneficial for joint swelling:  I would have to disagree on a personal level. Cabbage and cauliflower are as bad for me as the Nightshade vegetables.  I would have to say that cabbage is the worst!

Perhaps these vegetables act differently on a per patient basis.  All I’m relating here are the five vegetables that cause me the most problems with joint pain.

If you suffer from any form of Rheumatoid Arthritis, keep a food diary.  Try not to eat any two of these vegetable at the same time.  For example, eat potatoes one evening and then see how you feel the next day.  Keep track in your diary.  Eventually, you will have a list of the foods that cause you more inflammation.  And, you will know what foods you should “try” to avoid.  As I said, French fries are very tempting for me.  If I eat them, then I know I may have to pay the price the next day.

What is Iritis?

The simple answer to that question, “What is Iritis?” is that it is an inflammation of the iris! Yup! Not so informative, but I wanted to get something written down today – I wanted to give some more information about this eye condition.

These Iritis blog entries are not photography related, but I feel a responsibility to share whatever information I can find about Iritis, Ankylosing Spondylitis, AAU (Acute Anterior Uveitis) and RA (Rheumatoid Arthritis), because these affect me.

http://nawfalnur.wordpress.com/ (A look into my photography, special projects and my scannography project).

As a photographer, a person who sits in front of the computer for many hours at a time, and a person who gets recurring Iritis, the combination is quite frustrating – AND PAINFUL!

Moderation, that is one of the keys. Yes, moderation.

For a more detailed answer to what Iritis is, I found a good answer from Robert H. Shmerling, M.D., who is an associate physician at Beth Israel Deaconess Medical Center and associate professor at Harvard Medical School. He answers a question about, “What is the link between RA and these eye conditions?”

Click here  for the link to Dr. Shmerling’s answer. The answer comes from an HONcode Web-site, and this is a really cool NGO that gives a sort of accreditation to Medical Web-sites to make sure the information is accurate and medically sound.

Thus, if I link to any sites with information of a ‘medical nature’, I’ll attempt to find sites that have the HONcode logo, or some other type of accredited source.

Anyway, if I can find medical advice from PROFESSIONALS in the field (of whatever topic), then I’ll attempt to find the information to share and provide a link.

Otherwise, I’ll just be continuing to share some of my own thoughts and experiences on the topic of Iritis, Ankylosing Spondylitis (AS), Rheumatoid Arthritis (RA) and Being a Photographer with Iritis and AS…

Predictors of response to anti-TNF therapy in ankylosing spondylitis

http://rheumatology.oxfordjournals.org/cgi/content/abstract/kep422

Here is the results of a recent study done by researchers at the ARC Epidemiology Unit, University of Manchester. This may be useful to some people with ankylosing spondylitis.

Wrinkled Sheets

I quickly wake up.

The room is dark.

The atmosphere is silent.

It’s happening again, getting breath becomes a convulsive effort at best.

Wrinkled Sheets…

I lie there in bed, suddenly realizing that I’m gasping for a decent amount of air to fill my lungs, but it won’t come.

Morning confusion and pain, the more I struggle, the harder it is to get a good breath.

The more awake I become, the more I struggle, but there is only so much I can do to expand a ribcage that does not want to expand.

The short night’s sleep was enough to undo the progress I made the day before to loosen up the bones that make up my chest.  All it takes is a few hours of stillness, if I can call tossing and turning most of the night, stillness.  A few hours of sleep is enough for my ribs to tighten up again.

The pressure of the early morning air seems to crush in on me, and I fight for a breath.  Muscle spasms quickly hit me and that adds to the confused and unnatural efforts it takes to capture unsteady, small amounts of air.

Even the unevenness of the wrinkled sheets pressing against my ribs cause excruciating pain for which I can find no relief.  I toss and turn slowly from side to side finding that the wrinkled sheets have created little…how to describe…like little speed bumps all over the bed, and those push up into my body triggering more muscle spasms and crushing my chest.

Just a breath, just want no pain.  “I just want to wake up and feel good in the morning,” my brain screams!

If lying down is horrible, then sitting up must be better,” I say to myself.

I begin the sitting up process:  I push myself into a sitting position, and then I swing my legs off the bed and I sit there in pain.  I feel the spasms hit me in regular fits as I attempt to breath normally again.

It feels like the ‘Devil Hand Grip’ squeezing my chest.  Perhaps, this is the ultimate wrestling hold of all time, I don’t know.  What I do know is that this crushing hold happens with all too often a frequency.

After several minutes of sitting at the edge of the bed, there is no relief, it is the same…standing must be better.  It is too bad that I can’t sleep while moving around, while walking.

Standing is better.

The ribs are still clamped down on my lungs, but they are easing slightly and loosening up the more I move, the more I breath.

The spasms subside as the minutes tick away:  An hour goes by and breathing is considerably easier.

Breathing.  A full and refreshing breath.  Something so natural, so necessary, so unnoticed most of the time.  However, when episodes like this happen, the lack of good breathing becomes very noticeable to the “Spondy” (a term for a person with Ankylosing Spondylitis), especially in the early hours of the morning.

What sets it off?  I don’t know:  It’s just the disease.  That’s what happens.  I should be used to it by now, after 26 years of mornings similar to this one today.  But why should anyone ever get used to pain?  I don’t have the answer to that one either, but I know that as a Spondy, it will come and that is all there is to it.  I’m not bitching about it:  I’m just sharing a few thoughts about what it is like for me with Ankylosing Spondylitis.  Maybe there are others with AS who can identify with these types of mornings.  If you can, then you are not alone.  I only wish I had some answers for you to help make the “experience” easier.

One thing I can tell you is that there are, what I call, trigger foods:  Trigger Foods are those that seem to cause inflammation in the body.  At least, the list of foods that follow are some of the ones that make me feel very horrible the next morning, because they seem to consistently cause more stiffness and pain for me:

  • cauliflower
  • eggplant
  • potatoes
  • yellow dhal (lentils)
  • cabbage
  • tomatoes, tomato paste, and tomato sauce (ketchup is OK, however – not sure why, but happy about this!).
  • …and there are more, but these are my worst.

The problem is:  I love eating all of these things!  Damn the Arthritis!  Anyway, these foods, or any type of food that has a lot of these products in them (i.e., pizza, and many of the South Indian foods that I like to eat), seem to cause me extra pain.  All I can say is:  “Eat at your own risk!”

I’ve had my share of good, bad and ugly mornings.  This one was particularly UGLY!  Maybe that is why this blog entry is finally surfacing.

Maybe it’s just the wrinkled sheets.

Iritis Attacks, Some Thoughts 16 Dec 09

Today, I just want to share a few more thoughts about Iritis. 

Why do I get Iritis?

That is one of the search phrases I see often from people who find my blog entries about Iritis.

With that said, and from my own experiences with Iritis, I propose that there is one main reason you may be predisposed to Iritis; that there is at least one main psychological cause that contributes to Iritis; and, one modern day activity that contributes to Iritis “Attacks”.  I say, “attack” because it feels like an attack on your eyeball.  If you have had Iritis, you will know what I mean.

So let’s begin…

  • There is one main reason that you may be predisposed to Iritis:  It is a secondary condition of another disease.  In my case, I have an Autoimmune disease called Ankylosing Spondylitis (A.S.)…a type of arthritis.  I am also positive for the genetic marker, HLA-B27.

According to an article in the 2004 edition of the “Journal of the Royal Society of Medicine”:

“84% of HLA-B27 positive patients with AAU [acute anterior uveitis] have other B27-associated diseases—specifically Reiter’s syndrome, ankylosing spondylitis or psoriatic arthritis.” 

Source:  The ramifications of HLA-B27 , by Nicholas J Sheehan MD FRCP

  • Main Psychological Cause:  DISTRESS

Yes, that is correct, I said “Distress.” 

Life is Stressful:  Stress is normal.  Some stress is even good for us – it keeps us on our toes, motivated and creates excitement.  HOWEVER, many people are better at coping with life’s psychological and physical stressors than others. 

Constant and overwhelming (continuous stress) causes DISTRESS – feelings of extreme worry, sadness or pain.    

Therefore, I propose that if you have a medical condition that causes pain a lot of the time, or, if you are feeling ‘extreme’ pressure from stress or sadness, THEN it may be possible that this distress assists in the outbreaks of Iritis. 

B27 Diseases + HLA-B27 POSITIVE + DISTRESS = VERY PROBABLY Iritis.
  • Main Modern Day Activity that could contribute to Iritis:  Continuous, Long-Periods of Focusing your Eyes at the Normal Computer Screen Reading Distance.

There is one thing that my Ophthalmologist tells me each time I pay him a visit with a new outbreak of Iritis: 

“You MUST NOT use the computer for the next couple of weeks, because you are focusing your eyesight too long ON THE COMPUTER SCREEN…at that fixed distance!”  [from eyeballs to computer screen – basically arm’s length distance

I’m not sure how scientific that statement is, but it seems to fit my situation quite perfectly because I notice that before I get Iritis, I’ve usually been spending extra ordinary time working at the computer, and usually feeling stressed about a project or…whatever.

In today’s world of computer-everything, we seem addicted to being on the computer, using the Internet, and staring at that computer screen for hours upon hours.  I propose that there could be a link between Iritis attacks and over-working your eyes while focusing on an object (i.e., the computer screen) at a rough distance of arm’s length.

My doctor’s advice for dealing with this is: 

“OK, if you have to work on the computer, at least get up and walk around regularly and relax your eyes from time-to-time, see things at other distances – don’t just continuously stare at the computer screen.”

I’m not a doctor.  I do not claim that any of my observations or advice are medically worth a hill of beans.  In other words, you don’t need to take my word for it. 

However, in my experience with Iritis, I know that being predisposed to Iritis via another B27 disease, having my share of distress, and long-term computer usage, I’m pretty sure it all adds up to my risk of getting new Iritis attacks.  What about you?  Does any of this sound familiar with your dealings with Iritis?

With this knowledge, I attempt to at least reduce my distress and reduce my computer usage – there’s nothing I can really do about the A.S., but I can do things to reduce the persistent long-term pain.

If you too suffer from Iritis, I wish you all the best.  Maybe you can keep a journal of the events you experienced and the activities you did before the onset of an Iritis attack.  This may help you determine which activities you can control, and possibly reduce the frequency of Iritis.  It’s just a thought.

ARTHRiTiS SUCKS! A.S. HLA-B27 Since 1988- Edit B

ARTHRiTiS SUCKS! A.S. HLA-B27 Since 1988- Edit B, originally uploaded by fine-grain.

ARTHRiTiS SUCKS! A.S. HLA-B27 Since 1988- Edit B

Genre: Social Awareness Photography – Fine Art.
Series: “ARTHRiTiS SUCKS!”
Self Portrait.

Tattoos on my hand giving details: The first one is obvious, “Arthritis SUCKS!” Especially when you started getting it when you are in your early 20’s. A.S. (Ankylosing Spondylitis) usually hits young men in their late teens or early 20’s.

I was diagnosed with A.S. when I was 23 years old (in 1988), but I knew there was something wrong with my joints before that. “HLA-B27” is the genetic marker that makes someone more prone to AS and other autoimmune diseases referred to as the “seronegative spondyloarthropathies”.

That’s my Fina Acoustic Electric Guitar, and anyone who has Arthritis and plays guitar will know how painful maintaining fine finger dexterity can be at times. Any activity where flexibility and dexterity are important is a major issue for the “Arthritic.”

So, this image, and my FUSION photo, are my contributions to the Public Service of sharing some “knowledge” and “experiences” with Arthritis and A.S.

One common misconception that many people have is that Arthritis is a disease of the really, really, incredibly aged….Ah, well, that just isn’t the case with some types of Arthritis.

Maybe I’ll continue this “ARTHRITIS SUCKS!” Series as ideas click in my mind.

FUSION – USA Made, Installed In MY, Edit B

FUSION – USA Made, Installed In MY, Edit B, originally uploaded by fine-grain.

FUSION – USA Made, Installed In MY, Edit B

Genre: Social Awareness Photography – Fine Art.
Series: “ARTHRITIS SUCKS!”
Self Portrait.
Notes: I rarely take photographs of myself, but I thought, “What the hell, might as well use my own messed-up back as a statement about Spinal Fusion – One of the joys of having A.S. (Ankylosing Spondylitis). “MY” is the short code for Malaysia. The titanium parts were made in the USA, I believe.

Sorry, no “sexy back” here!