A.S. Face 2008: Karen Chapman

A.S. Face 2008: Karen Chapman

A.S. Face 1521: Belinda Sumner

A.S. Face 1521: Belinda Sumner

A.S. Face 1360: Goodie Hiensch

A.S. Face 1360: Goodie Hiensch

I’m Goodie Hiensch,
Thank you to everyone for showing me, its not just in my head and that its ok, I’ve found a place where no one will look at me, with eyes saying ( for crikey sake get over it). Thanks guys, you all rock.

A.S. Face 1168: Nicole

A.S. Face 1168: Nicole

My name is Nicole and I’m from Melbourne, Victoria, Australia.
I absolutely adore animals – my number one fix when I’m feeling down is to hang out with my pets – I have a cat called Jasmine (8yrs), a labrador called Sherlock (almost 2) and a cavalier king charles spaniel named Ruby (she’s 13). In the photo included is my dear Max, he made it to 15 and 6 months, but sadly passed in December 2013. Second to that (or while getting cuddles) movies and books are my other greatest comforts. nothing beats a great read or an awesome movie/tv series to get your mind off things. Of course it’s important to move lots too, so sometimes I have to be on the exercise bike while watching said awesome shows.
I was diagnosed with AS at 18 (almost 19) in 2009, and my brother (then 21) subsequently got checked as he had also experienced some similar pains. He was also diagnosed shortly after.
I have had one major flare up in 2010; my right SI joint, knee and ankle all went along with it. My knee and ankle both became swollen and it made it very difficult to walk (let alone with the SI joint pain alone). That peripheral swelling lasted over 3 months. I was on prednisolone for over 8 months total as I was weened off a high dose. I am now on Humira, anti-inflammatories and methotrexate, and it has so far been working well for me. In Australia we are lucky enough to have government subsidisation, and Humira only costs AU$35.00 per 2 injections. I feel awful when I read about the costs of the same medication in the US and other countries. I have also managed to develop osteoporosis of the spine and osteopaenia in the hips.
I’m now 23 and I have completed a course in Personal Training. I am yet to work in the industry as I only just finished the course, but I hope to keep physical fitness high on my priority list for myself and future clients, to encourage healthy people to enjoy their health while they can, and to possibly help others with conditions like mine.
I am about to begin a Masters degree in Editing and Publishing – I hope I can get through it relatively flare-up free, we will see how it goes.
Thank you so much for creating the faces of AS. I love to get on and read some every now and again – it’s great to see all the different people and all their stories.
Much love to all. xx

A.S. Face 1086: Dale Alford

A.S. Face 1086: Dale Alford

My name is Dale Alford and I live in Melbourne , Australia.

I was diagnosed 2 years ago.

Long story but they were looking for an answer to the abdominal referred pain I was getting everywhere but my back.   I did some research, spoke to a rheumy who said I couldn’t have AS as I was too flexible.  years of boxing and genetically hyper mobility in my joints might have had something to do with that .  went back to my GP who agreed a blood test wouldn’t hurt . it same back positive so the rheumy agreed to test further.  Confirmed 2 days later, nearly 2 years wasted looking in the wrong places including one unnecessary operation.  currently taking NSAIDS and Lyrica ,  but will probably start on TNF inhibitors in December.  Good days and bad days, but at the moment I  managing to lives reasonable if somewhat restricted at times life.

Victoria, Australia

A.S. Face 0778: Fez Riches

A.S. Face 0778: Fez Riches

G’day my name is Fez Riches im 30yrs old, from Melbourne Australia.
I’ve been suffering A.S in my hips, lower back, knees, lungs and bowels since I was around 12 but wasn’t diagnosed until I was 19.
During those years I was a very active person playing many sports such as high jump at state level, soccer, Basketball, aggressive inline skating, cricket and cross country running.  Having been heavily involved in all these things (especially skating) I coped a large amount of injuries and the doctors usually blamed them for all my aches and pains.
My First major flare up came on my 19th (2002) birthday when I woke up at 4am screaming and unable to move my hips and back. The week leading up to this I was stiff and sore, but I just thought it was due to a big fall while skating and the flu I had. I was rushed off to the hospital where they told me I had most likely pinched a nerve and I should just ice and rest the inflamed areas.
2 weeks later and still unable to walk without crutches I went to see a local GP and after listing all my symptoms for about 5 mins he said
“Good news and bad, you have a famous disease called A.S the same one that Daniel Johns (Singer/Guitarist of Silverchair) has.  The bad news is, it’s a life time thing and most likely will get worse.”
He sent me off for scans and blood tests, which all showed that he was right. He also said to check my family history, which I was surprised to see several relatives also had been suffering from A.S.
The news really hit hard.  I was thinking that all the sports and things that I enjoy could be taken away from me.  I was put on some heavy anti-inflammatory’s and sent on my way.  For a while they worked well and I was still able to skate and move around, but nowhere near the same level as before the flare up.  Gradually the pain and stiffness crept back in and during really cold days the pain was so intense it would floor me for days.
At the age of 22 I started to work in an aluminum foundry where the environment was nice and hot; the average temp in winter was about 30 degrees celsius and in summer around 48 to 55 and that helped a lot.  At this point I developed breathing problems, which I thought was from the dusty and fume filled work place and my smoking didn’t help.  A few years later I was told that it was part of my A.S that my lungs where swelling up against my rib cage making it hard to breath.
I’ve felt some form of pain or stiffness everyday since my 19th birthday flare up.  Some days are worse than others, but its always there.  I had a really good few years from 21 to 26, where I could still do all the things I loved doing without much trouble and a very small amount of meds.  I even started to roadie for several bands traveling the country nearly once a month.  During which, I only had very few minor flare ups.
2011 saw the Birth of my son in January.  Then in March 1 week out from my birthday (again) I felt the onset of a flare up.  I couldn’t stand up straight, lift my neck, breath properly, or even walk.  At 11pm it became too much and my wife called an ambo.  They came and had to lift me out of bed.  I was in hospital for 2 weeks on strong pain meds and a range of anti-inflammatory’s.  At one point they put me in an MIR scan and had to pull me out due to the screaming and pain I was in.
This by far was the most pain I have ever felt and even though all the morphine and other pain killers I could still feel the swelling.  This Flare up cost me dearly, I missed 2 weeks with my new born son, my own birthday, 5 weeks of work, one of the greatest music festivals, which I was looking forward too for a months, and 2 Paintball tournaments.
Since that flare up I’ve been on daily Meds, which have helped a lot but my movements have been restricted and flare ups happen a lot more regularly.  I do loose out on a lot more work and events these days. Having said that I have found activities and things that bring me as much joy and happiness as the things that my A.S have taken away from me.  My wife and child (and another one on the way) friends and family being the greatest source of happiness and strength to keep going on and paintball comps hahaha.
Australia

A.S. Face 0764: Melanie Ardley

A.S. Face 0764: Melanie Ardley

Hi I’m Melanie Ardley 38  Melbourne Australia diagnosed at age 34 but have had pain since early teenager.
I have AS…..AS does not have me !
Australia

A.S. Face 0720: Sacha Owens

A.S. Face 0720: Sacha Owens

I started to get lower back pain at around 15 or 16 yrs old. As most ppl with AS at that age, I was told it was growing pains or for me too much horse riding. I was then made to give that up.
At 18 my family emigrated from the UK to Australia, I still had the lower back pain and stiffness, therefore started to go to different doctors until I got to the bottom of it.  They all tried to tell me to either loose a few pounds or it was a pulled muscle. Finally at 23 I see a GP that ran blood work that showed I had a very high level of inflammation. Luckily they had a Rhumatologist that rented a room at the practice and so i got to see my first rhumatologist. she ran more tests and x-rays and I was diagnosed with AS.
As this was back in 1995, the only thing available was medication such as Celebrex. This took the edge off but i still had lot of morning stiffness and the fatigue really got to me. I already worked long hours in my job trying to climb the professional ladder in the Import and export shipping industry, dominated then by males. So when I got home from work I could barely move and would swallow anti inflammatories and pain killers such as tramadol by the truck load. I couldn’t sleep due to the pain and started to get frequent and long bouts of sciatica. I had numerous trips to hospital emergency where i was given morphine until the pain subsided and I was then sent home. However I rarely missed a days work, fighting the disease to not take over. I did however pile on weight due to not having the energy to exercise and ate takeaway or quick meals for dinner with little to no nutrition.
At around 28 I started to see a new Rhumatologist whom to date at 40 I’m still seeing. By then a few new drugs had come onto the market and bio-logics were in testing faze and waiting to be released in Oz. no drugs worked including methotrexate that any more than 17mg would make me vomit. At 29 I started a new job with normal working hours and less stress and started weight watchers and light walking of a night. My nan whom half raised me was diagnosed with lung cancer and her strength encouraged me to keep this up. By 30 I had lost weight and was starting to look good and feel better with just morning and through the night stiffness and slight fatigue. This was good for me. I married just after my 30th birthday in the Cook Islands, by the time our photos were taken I was told my nan had passed away whilst we were taking our vows. This broke me and eventually my marriage as my husband believed she deserved it given she smoked.
At 33 I was divorced and drinking 1-2 bottles of wine a night, heavily smoking on Valium and high doses of tramadol. Indocid, mersyndol night strength and methotrexate.
I then was all of a sudden approved and went Onto my first bio-logic drug – infliximab. I started a new job thinking it was better working conditions and a new start in my career, with more working benefits such as fortnightly myotherapy sessions, working from home 1 day a week, and after 1 year in feb 2006 I was given a round the world flight ticket as a performance bonus.
I met my current husband in the march and things were going very well. I wasn’t drinking, i was losing weight, exercising and pain was non existent.
but……within a week of me meeting my husband to be i got pneumonia and severe pain in my left arm and hand with pins and needles. I was taken off the infliximab and put on high doses of predisolone and anti biotics. I got a quick appointment to see another specialist to do with the hand pain and tingling. And after testing i was told I had carpal tunnel.
i started to go down hill again, in pain, not sleeping more than 2 hrs a night and no energy. i took only a week off sick and pushed myself to get over the pneumonia and put up with the constant arm and hand pain and numb fingers whilst trying to type all day. My work never suffered.
in June 2006 at 34 I i had my carpal tunnel surgery and the day after the stitches come out i left my new partner for 4 weeks and went back home to the UK to visit family and friends for the first time in 16 yrs. against however my doctors orders. My lungs were very weak still and so I was sent off with numerous drugs to take overseas and a letter from my Rhumatologist. I enjoyed my holiday, but suffered severely from exhaustion and struggled to walk. But I kept pushing myself every day. I travelled to Spain for a week and LA on my way back to melbourne.
By the end of 2006 I was diagnosed with rheumatoid arthritis in the neck and hands and had tendinitis in both forearms. I was put on enbrel which gave me severe excema and psoriasis, back on the steroids I went, as was still battling weakness of the lungs and seeing a Respitory physician for that.
My life now consisted of either being at one of 3 specialists (rhumatologist, dermatologist, respitory physician), hospitals for various tests, GP’s for prescriptions or going for skin light therapy. Myotherapy o keep me moving or acupuncture for the tendonitis. PLUS still holding down a now very demanding and long day job in the CBD. Oh and building a house with my new partner. It was at this point depression set in.
Eventually after getting skin cancer from the light therapy on my back, and therefore having more surgery, right arm with carpal tunnel and so surgery for that and my boss refusing me anymore than 3 days off for that surgery, fluid coming out of my legs due to them being so swollen from the predisolone and rashes everywhere, going onto humira that gave me a lung infection, swelled my hands to the point i could hardly move them and weakened my lungs further!!
I felt my life was over and I sank further into depression. But I still worked and kept fighting everything. I now barely slept regardless of being in pain due to the years of not sleeping. i was now an insomniac.
The skin cleared in 2010 and I booked myself in to have lap band surgery privately to try and get on top of my severe obesity.
3 months before my surgery I started to have severe neck pain and unfortunately due to having AS and rheumatoid and a curvature they didnt know what was causing the extreme stiffness and pain, so I went back into hospital for 2 days to get more morphine and put on a higher but controlled dose of anti inflammatory drug and muscle relaxants.
Upon discharge and seeing my rhumatologist, I was then told to chose what I wanted treated. The rheumatoid or AS as they could only put me on a bio-logic to treat one and hope it helps the other. I chose to have the rheumatoid treated as my hands were quite bad and I needed them to be able to work, drive and dress myself etc. I started actemra. A infused drug given every 4 weeks. That has worked great for my rheumatoid as so to date I’m still on it. I lost weight due to the lap band and again started to climb that ladder.
I had set backs of course, but kept trying to lose weight and hired a weekly personal trainer and  invested in a treadmill and elliptical trainer and other strengthening gym equipment.
In jan of 2012 my neck pain came back with a-vengeance and I couldn’t even get my neck back far enough to lay flat to have an MRI scan, so tests were blurred and inconclusive. I was put on a long waiting list to see a pain management specialist to possibly have cortisone injections in my neck.
My weight was climbing quickly and my depression was taking over me. I was also planning a 5 week trip to America in August 2012 starting with a wedding in Hawaii. I was not motivated to plan a thing. Everyone kept saying “oh yr so lucky, are you excited” and I wasn’t.
I started a course in hair design and makeup artistry of an evening trying to find happiness and a hobby that that i could turn into a sideline business. I just wanted to be happy and feel good about myself. I excelled and by may 2012 I had business cards, facebook site and had done 3-4 makeup and hair on clients. This made me happy and I wished I could leave my highly stressful working environment and just do this. But we relied on my wage as I earned very good money.
On the 29th June 2012 my boss called me in and instantly dismissed me on the grounds of I was making ppl in the office feel un-comfortable with my constant illnesses and no one liked me. I didnt talk enough as i always wanted to leave on time. even though my boss nee my health situation and i explained I concentrate and dont talk so i can leave on time and get home to rest, apparently this was not acceptable.
i took him for un-fair dismissal and discrimination and won. He paid me 25 weeks pay which included my share of 7.5 years of long service leave, general pay and annual leave. I was also allowed to leave on the grounds I resigned. Needless to say I don’t keep in touch with anyone there.
I went on my holiday and got married but got sick after a fall 2 days in. i now had pain in my upper back, neck, pain now going down my arms, pins and needles and left shoulder blade acute pain. I had bulging discs down the whole of my cervical spine and 3 in my upper back. Needless to say my holiday was full of more pain, trips now to USA hospitals and doctors and a couple of trips to theme park accident and emergencies. We missed out on a handful of things we wanted to do but i battled through pain with gritted teeth a sheer will power and so still managed to do most of the main attractions I wanted to do.
We came back in September and 2 weeks later, the day before my 40th birthday and the day we were hosting a big party to celebrate our wedding and my birthday, I woke and couldn’t move from my waist up. I was taken to hospital by ambulance and pumped with morphine and more muscle relaxants and anti inflammatories. They worked enough to get me walking but I couldn’t  raise my arms to even wash properly etc.  I was therefore released that night with enough liquid morphine and other drugs to hopefully get me through my party and the weekend. my Rhumatologist wanted to see me on the Monday to look at admitting me to hospital for a longer stay. I got through the party, in flat shoes but in a sparkly dress. I managed in pain to do my makeup and my cousin did my hair.
Unfortunately we had problems with my husbands friends being rude to my family and also his parents doing the same, they made ppl feel un-comfortable to the point ppl left including all my family and our other guests. Once my immediate friends left I crumbled. I went into our bedroom and we found out that 4 cards had been stolen with money and vouchers in. It was virtually the icing on the cake.
My husband helped me get ready for bed and got my juice so I could take my liquid morphine dose and other drugs. I opened my bedside cabinet only to find that my morphine had been also taken as well as my Valium.
I had the doctor come to my house but that took 12 hours. I barely got through the next couple of days and now due to see my rhumatologist on the Thursday.  On the Tuesday after the party my mother in law caused even more trouble which ended with a blazing row between my husband and I.  In crippling pain I huddled in the corner of my bedroom on the floor sobbing, preying for more strength whilst looking at the ceiling and asking my nan who had instilled my strength throughout my life, and of course who had passed to help me get through this. I managed to call a friend to come get me and my dogs. By the time she got to me I was catatonic. I next remember her washing my feet at her house and telling me I was safe.
Since the 9th October 2012 I have left my husband and spent 2 weeks in hospital after having a nervous breakdown and needing long term pain management. I live with my mum and go home to work on my marriage at weekends. I’m under a physciatrist, on stronger drugs for my depression and pain, and on a disability pension. I’m likely to have to file for bankruptcy due to huge credit card and loan debts accumulated through spending to make myself happy over the years. I’ve also been diagnosed with chronic fatigue, Osteo arthritis, OCD and i have anxiety and panic attacks.
But…..I m still fighting. I haven’t been catatonic in 5 weeks or had a panic attack in 4 weeks. I’m seeing a neuro surgeon end of January and preying he can help me get relief of these bulging discs and pain somehow. And if so I will then get through that and look for a very low stress job, closer to home. I’m doing a candle making course as I have found essential oil candles have helped relax my body. I’m listening to music of a night instead of the TV to try and help me sleep, and taking my pain management of AS one day at a time. Trying not to stress as this really inflames my AS.
My 12 yr old dog who’s my baby (as I couldn’t have kids with my AS as its always been too flared to come off medication). Has a heart condition and has recently deteriorated, so last week after he collapsed I was told to prepare for his passing. I’m now trying to come to terms with that as he’s been my strength and loved me un-conditionally when others have told me things such as “you have arthritis cause yr over weight, just exercise every day and you’ll get better, you don’t look sick, you need to get a grip, you stress too much that’s yr trouble”. Where as my Riley Dog looks at me and I know him and his brother Darcy Dog love me for the person I am. Where no one else does.  So him passing will be my next hurdle to get over. I don’t sleep much as I watch him all night in case he goes or needs to pee due to the diuretics he’s on.
I feel AS is a constant battle and a lot of strength is needed to cope. No one apart from those with AS know what we go through.
The above has been my life and I look back and can’t find a great deal of happiness there. So i reach back to when my nan was alive and remember her strength and laughter even when she was frail and dying. Memories of that and my dogs is what keep me going and alive and still looking for a bright future with happiness in it ….
i see a therapist to help me with everything on a mental level and continue to do things such as myotherapy, acupuncture, Physio and my neck exercises. i also try and keep my mind busy every day.
I’ve set myself a target of June to be back working, and have my FB site back up and running for my makeup business, including the selling of makeup which l hope leads me one day to having my own foundation line. Then if all going well with my neck, I hope to lose 20 kilos by the end of this year. So I’m still fighting this disease as much as I can.
this photo of me was taken Xmas day 2012, the only pain free day I managed to have in 2012. Why i don’t know. And I’ve had 2 so far in 2013.
Kind Regards
Sacha Owens
Melbourne, Australia

A.S. Face 0697: Sari Smith

A.S. Face 0697: Sari Smith

My story is like that of so many others with AS in that I have suffered for many years but was diagnosed just over twelve months ago.. My name is Sari Smith and I have AS. I am 54 years old, a writer, I live in Melbourne, Australia, but I came from Western Australia fifteen years ago and prefer the warmer, brighter climate of the West. Having dragged my children over here, going back does not look like an option at this stage. When I was a child I often had sore feet and became very tired at times, for example, wanting to sleep for hours after swimming lessons. At fifteen years old I had a severe bout of gastro which left me with IBS for the rest of my life. I had every test under the sun and nothing was found until a Gastroenterologist found minor cellular changes to my GI tract suggesting Coeliac disease in the late 90′s. I began a gluten free diet and improved  -plus my long-term iron and zinc deficiencies improved. I became a teacher and later, a university lecturer in Writing, having married young and had three children. When I gave birth to my third child, the labour was excruciating on my back and it continued to be very sore.  I was encouraged to do physio but it was agonising and I refused. I intuitively knew that those exercises were going to do harm and just walked the pain off until it began to get better months later.
In 2004 I contracted parvo virus which triggered “reactive arthritis.” (a common first episode of AS I now know). I was devastatingly ill for 12 months, had to take two months off work and returned part-time as I was the bread winner (having divorced and remarried, three children to support). Every joint in my body hurt 24×7, I couldn’t function without Viox, panadeine etc. I lost 10 kilos and my children secretly thought I had AIDS (My daughter confessed this to me a few days ago. Tragic that they worried without actually asking me!). My husband and I honestly thought I was dying.  I went to several rheumatologists who were rude, dismissive, arrogant and downright mean. Finally I went to a woman rheumy who listened and asked about family history. I didn’t mention my Dad’s decades of back pain because he had a story going that it was all from injuries in the armed forces (probably incorrect), his long history of medications or the fact that he’d had his neck fused surgically and mainly moved around in a red scooter!
Instead, I remembered an Aunt who was crippled so badly that she lived her life in a chair and couldn’t go out. The kind doctor concluded that there was some inflammatory arthritis in the family and I should start on Plaquenil.  I went back to my GP who told me not to take it, that it wasn’t warranted. The lovely Dr died that year and the new rheumatologist greeted me at every appointment with “This is nothing compared to what I see every day.” The fact that I looked relatively slim and healthy seemed to blind her to my suffering.
By this stage I had hundreds of symptoms and many diagnoses; fibromyalgia, chronic fatigue, Raynaud’s, chronic sinusitis, plantar fasciitis (though the Xrays could never detect it) etc etc. My life was a misery.My heels had hurt for a decade, sometimes so badly that I used crutches.  The worst symptom, though, was deep and crippling fatigue.  I took redundancy from my job and a couple of years later, after much financial suffering, a former colleague supported me to apply for disability insurance which was part of my Super scheme. My application was successful which has reduced the stress and pressure considerably. It’s a modest, fixed income but far better than being on unemployment benefits. I mention this because too many people don’t know that  their Superannuation Fund may carry disability insurance. It used to be compulsorily paid by the employer in Australia so if you are over a certain age, it’s likely you have it. When/if you leave your job, the workplace often doesn’t notify your Super Fund but they should. There are many, many unclaimed benefits which makes me angry for those missing out.
Coming from a highly competitive academic environment I felt like a failure: I wasn’t writing or publishing, was spending all my time at home, feeling isolated and depressed and I hadn’t met many of my self-imposed goals. I would try new career directions, volunteering, new interests etc but then when I was too tired and in pain to follow through, would blame myself for lacking will or persistence. ( I was also trying to finish my PhD and probably hold a record for the number of times I quit then re-enrolled, depending on how well/unwell I felt at the time).
Just over twelve months ago, I went to a walk-in clinic with sinusitis and horrific lower back pain which woke me every morning and met the GP who was to change my life!  He was clearly very intelligent but lacking in bedside manner. He asked me why I wasn’t working (Hey, I look okay, right?). He compared me to his patients with “real” arthritis who get shots every couple of weeks. I’d had enough of years of this abuse. I told him, angrily but in a controlled voice, that I had a friend with Rheumatoid Arthritis, that on balance she and I concluded that I was sicker  (she was still able to work) and I gave him a litany of my symptoms, saying that everything from my head to my toes hurt. His whole face changed. “What’s wrong with your head?” he asked, smiling. I answered, “I have terrible psoriasis.”  Not one of the genius specialists ever actually put all the symptoms together or asked the right questions. Within a week he had tested for HLA B27 (positive) and sent me to a rheumatologist. I was started on prednisone to get the current flare under control followed by Methotrexate.
How is my life today? My disease is not under control and I’m waiting to see an AS specialist in a couple of weeks to get another opinion on my treatment. I still have a lot of losses to grieve as well as a lot to be thankful for. I have a supportive husband who does nearly everything around the house (I like to cook!), wonderful children and a beautiful disabled grand-daughter. I’m learning constantly and letting go of the rather driven, too-busy person I used to be. Would love to have the energy for more creative work but perhaps in time… PS. My Dad is 85, living in care but still loving life. I went with my Mum to see his GP and he was finally diagnosed with AS!!
Australia

A.S. Face 0691: Debra

A.S. Face 0691: Debra

I don’t know where to begin. Lets just say that I have had headaches since I was 12 and at 15 contracted encephalitis. At 21 had a spontaneous pneumo thorax (lung collapsed after I sprinted with my 12 year old brother) It could have been within a year or so of that that I noticed that if i stood talking to my nieghbour for too long and my spine felt like it was compressed and after these occasions i would sit and my lower back would cramp as I relaxed, then I would be okay. Continued to have low back back especially after sleeping,for many years and was told I had a curved spine and because of my pregnancies (have 5 kids all grown now) that the pain was from wear and tear.
Immigrated from South Africa to Australia in1992 and was divorced a couple of years later. Went to school to study for personal Care attendant so that I could work in aged care. In approx 2000 I started to also get what I call *broom stick handle pain) this was in my upper back where it felt like i had a broom stick in between my vertebra. This pain was worse depending on how long I was in bed. Usually though a hot shower and an hour or so later I felt better. At this time I was working night shift in an Aged Care facility and being a single mom, didn’t sleep so well during the day. Then I had a new pain. This was absolutely excruciating.On one side deep in my buttock. I could not weight bear at all. Even lifting my leg ever so slightly to take a step was agony. My daughter who was 16 at the time had to walk slowly behind me pushing my foot on the effected side so that the foot slid along the ground so that i could hobble very slowly, every step had tears running down my face. In a few days it was ok and life continued. The lumbar and thoracic pain was daily but i could manage, I did finally go to a Doc again in 2003 because the pain was worse and lasting longer after waking. He said one leg was slightly shorter than the other, took down my history and sent me off for blood tests.
The result was that I had a gene that pre disposed me for a back disease. I didnt get the name of the disease because the doctor got a phone call and had to go off on an emergency. Looking back now I am amazed that I didnt follow up on that. Maybe I was in denial because I was going to the states to get married to an American.  Left for the states in 2003 and within a couple years the marriage fell apart and I was once again a single mom with two children (the other three were chose to stay in Australia, one with her dad and the other two were 23 and 26 and on their own).  I still of course had pain daily in upper and lower back with flare ups of the hip buttock pain which was always severe and debilitating, but I returned to work to support myself and my girls after doing a course in Aged care (CNA as it is called in America)
This was an 8 week course 4 days a week 8 hours a day.  From sitting so many hours on a hard chair I suffered two massive agonising flare ups.  Ended up at the ER.  Because I had no insurance they did no tests and just filled me with pain meds that almost killed me and caused severe headaches and vomiting.  The muscel spasms are indescribable.  My older  daughter had to drive me and dress me for 3 weeks on average each time.
More massive flares followed over the next few years, one after painting a bedroom and one after moving house.  The rest of the time i was in daily pain but managed, with fllare ups in what I have since learned is sacroiliitis. Horribly painful. Finally I decided to move back to Australia which took two years of saving to pay for the fares home for the three of us.  I knew something was terribly wrong  but every time I googled my symptoms nothing matched exactly what I was going through.  Finally I told my daughter about the gene the doctor had mentioned in Australia years ago and told her to do a search describing my pain and add (caused by gene).  Within minutes she squealed *Oh my gosh mommy I think I know what you have). I read the article and they could have been describing me!  I read about the heel pain which I remembered I had during my last two pregnancies but which disappeared after the birth, and I remembered how painful my pubic bone was as if it was shifting.Heel pain has returned by the way, lasts for days then I might not get in again for many weeks and so on.
Then I thought of my son who had also had bad back pain and immediately e mailed him in Australia and told him to get tested for the HLA-B27 gene.  I couldnt as I couldnt afford it.  Bingo he had it too and was diagnosed with AS and has been on Humira now for three years.  Arrived back in Australia in 2009 and within two months was working back in Aged Care.  I rented a room in a private house as we had returned with nothing but our clothes.  First two years back  I continued the same way but with worsening pain now in entire spine from my neck (which is the cause of my headaches since childhood) to my sacro and terrible pain in my hips.
A year later I finally went to GP with my suspicions, was told I had degenerative disc disease.  I went to see another doctor and broke down sobbing saying I cannot go on like this and demanded he refer me to a rheumatologist.  Told my story, had a physical exam went for x rays and blood tests and what do you know I am HLB-27 positive and RH neg (that part of course I had known for years) and had lost the normal kyphosis of thoracic spine and flattening of lumbar spine.  EVERY disc has lipping and I have sclerosis of lumbar blah blah blah.  For the last year i have struggled more and more at work as it is very physical working in a Nursing Home.  I told my boss as soon as I got the formal diagnosis and  even showed her my x ray results and asked if I could drop two shifts and work the 7am to 1pm shifts instead of till 3 and she was fine with that, However as our Residents became more dependent the work load increased dramatically and with pushing large lifting machines around and dealing with physically resistive and some violent residents I finally had the flare up directly sent to me from hell.
Worked on the Friday, struggled through the shift.  Woke Sat after the usual tossing and turning in agony.  It took several minutes to get out of bed and I could not stand upright at all.  Whole of my thoracic and lumbar spine was on fire.  Couldnt work Sun and went to GP Monday who gave me panadiene forte and prednisone.  Made no difference to the pain.  To cut a long saga to a novellete, my pain was so severe and crippling that I became completely helpless.  I thank God my eldest daughter who lives with me was here,  For the next two weeks she had to help me out of bed and hold onto me while I spasamed so severely that my legs buckled, then assist me to shuffle agonisingly slowly, to the bathroom several times a day, dress me, make my meals, sleep on my floor in my bedroom so that when I needed to move she could help. I could not lie down or walk or sit or move at all in bed without her assistance.  She held me while I cried and was brave enough to hide her fear when I said that I cant stand this anymore and sobbed in her arms.  When i could move enough to get to my rheumy and was able to lie down to be x ray and then have a bone scan and more blood work up the decision was made to put me on Simponi as obviously I couldn’t even work and certainly had and still have (this has happened in the last 7 weeks)no quality of life.  He prescribed valium for the spasms and that worked after only a few doses and Amitryptoline (sp) Mobic which I was already on daily, Tramadol (which I had to stop because it sent my liver function up).  slowly improved over the last two weeks and then for the last week I got a nasty bout of kietzes syndrome with a very tender lump on my sternum.
Took Celebrex instead of Mobic last night and today that is a lot better.  My Rheumy applied to Aussie Government for me to be accepted for Simponi and of course as my AS is very active and sacro almost completely fused it has only taken 2 weeks to be approved which I found out yesterday.  First injection should start in one to two weeks.  So please fellow AS warriors pray that it is my wonder drug.  As of right now, I have my every day pain and stiffness which I can deal with.  Thanks for reading and I apologise for the length.  I haven’t covered everything to do with my pains but that’s the important stuff.
I have been off work now for seven week or closer to eight and have 2 dollars in the bank.  Hoping my Sickness benefits from Social Security kick in next week, which isn’t enough to pay bills but at least I will be able to eat.  Rheumy says if Simponi doesn’t improve things then I will have to go on disability.  I certainly don’t think I can return to my job anyway as not only is it too hard physically even for my colleagues who are disease free, but I believe my employer sees me now as a liability. At this moment though even with all this going on, I know there are many AS sufferers who are worse off so to those and all of us out there fighting this awful enemy, I send gentle hugs and know that you are not alone.
Forgot to mention also that I seem to have developed asthma during the last few months with shortness of breath and wheezing.  I cannot lie flat on my back at all (so all x rays and stuff are hell) because it feels like my chest is being crushed.  Chest X ray results fine thank goodness.
My name is Debra and I have AS
Melbourne
Australia

A.S. Face 0651: Raewyn

A.S. Face 0651: Raewyn

Hi my name is Raewyn  I’m 52 years old and I  live in Melbourne, Australia . I wasn’t diagnosed with “AS” until about five years ago, though I have had alot of pain from my earliest twenties and continuous “Anterior Uveitis”   I spent many visits, hours at doctors, telling me it was sciatica, when I have struggled to take a step, try to walk,  I even at one stage, had a  doctor tell me, stop trying to get workers compensation  ! even though I hadn”t even mentioned this lol !  Unfortunately “AS” is a hidden disease ! and in between flare ups, no one in my case would ever know I had this.  Fortunately, five years ago, I found a great doctor, who said to me,  he thought it was some form of arthritis, but he wasn’t sure.  So after visiting a Rheumatologist, having MRI, Xrays and a genetic test, which confirmed I have the HLA-B27 marker, I got the diagnose of “AS” I try not to let “AS” Stop me from enjoying my life, defining who I am !  and while I can still walk, for “AS. ” is now progressed to my ribs and neck. I  am going to keep working , I just recently got back from Thailand and Indonesia and Malaysia with my hubby and youngest daughter, I have two girls and my oldest daughter is getting married next month and I’m looking froward in the future hopefully to enjoy having grandchildren.
Australia