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.