A.S. Face 0231: Jane Sandford

My name is Jane Sandford and I live in a small rural village called Brough in East Yorkshire on the east coast of England.  I am married to John and have a daughter, Jennifer, aged 20 who is studying History at De Montfort University in Leicester.  I work full time for one of the UK’s major banks and on the face of it my life looks pretty average.

I was lucky, or at least I feel like I was, I never struggled getting a diagnosis of my AS like most do, in fact it feels like I came upon it quite by chance.  Ever since my early twenties I’d had problems with acute back pain with periods where I was quite immobile.  I had a road accident aged 18 and it was always assumed it was residual from this.  Looking back it was probably this trauma that kicked it all off.  I remember walking up to the church in my bridal gown at aged 25 and people telling me to walk properly and stop slouching.  Some three years later when I was pregnant I had terrible problems with my neck and shoulder blades and then afterwards it progressed into the lower spine and hips.  When Jenny was still quite young I began part-time work at the local hospital working as a medical secretary to a neuro surgeon.  One day when I was struggling with back pain he asked me about my problems and recommended a Orthopaedic Consultant.  When I saw him a couple of weeks later he seemed to connect straightaway with what it was and referred me for some blood tests, x-rays and MRI.  When the results were in he told me I was HLA B27 positive and I had ankylosing spondylitis.  At the time I was a young wife with a child and so many priorities in life that it didn’t sink in what it meant.  At the time I knew diddly squat about AS and the impact it has and to be fair during that time all it did mean was the occasional bout of acute back pain.  During 2004 a toe on the left foot began to gradually swell and turn a shade of deep red/purple.  I ignored it for a while but soon it progressed to the entire foot and I was unable to wear a shoe and then eventually weight bear.  It was excruciating and I was passed from one specialist to another.  My GP at the time insisted it was gout, despite the test being negative.  Eventually I got to see another Orthopaedic Surgeon because they thought it was a bone problem and he took one look at it and declared “that’s classic ankylosing spondylitis that is”.  And so began the latest flare which lasts to this day …

Being informed about your disease and being able to talk to fellow sufferers is the best form of armour for me.  I’ve had to fight tooth and nail to get anti tnf treatment which isn’t given out willy nilly in the UK.  I have had to write letters to MP’s, health authorities and consultants which have had a less than friendly tone, get aggressive and question everything.  I was commenced on Humira after my MP got involved and this was eventually changed to Enbrel after some difficulties with liver test results.  My methotrexate injections pushed my liver enzyme results so high that they accused me of being an alcoholic.  After they stopped the methotrexate and my results went down they back tracked at said it was to blame.  My knees are so bad now and in particular my left knee has been drained twice and I’ve been hospitalised once because they were so bad I couldn’t walk.  Oh yes and my friend who I call “Lil Miss Bitch AS” introduced me to her other friend “Lil Miss Poke You In The Eye Uveitis” – love her, she comes around every year or so.

So that’s me and my life in a nutshell … the lady who shouts at consultants, questions all things diagnosis wise, loves Orthopaedic Surgeons (they are gods), hates rheumatologists and will spout off at any opportunity at any person about AS.  My motto is don’t let the bitch get the better of you and live life the best you can.

Brough, East Yorkshire , England

12 Responses to “A.S. Face 0231: Jane Sandford”

  1. Love, love, love your attitude!!!! Wonderful post!!

  2. Dear Jane,
    Thank you so much for sharing your story with us. I love your attitude!
    Sincerely Cookie

  3. Your perssonality wins against “the Bitch AS”! Wonderful outlook.
    Thank you!

  4. I LOVE your attitude. You go girl!!! Thank you for sharing your story Jane.

  5. Love your nicknames for AS and iritis! I know those so-called friends well myself.

  6. Jane, thank you for sharing your story. If you lived here I’d have you over for a spot of tea and we could talk the day away!! I hope you check in here often. Have a good day! Your AS friend, Claudia

  7. Welcome. Love your spunk.

  8. I admire you for your strength – I am going through a battle at the moment in the uk, the sort of battle, where all doctors just look at you like you are insane, and as another door is closed on you, they just say, hope you feel better soon!! Fingers crossed that one day I am lucky enough to receive a diagnosis. For now, I will carry on taking the pain killers and wait, as my consultant told me, to fuse, then my pain will get easier!!!

  9. Look at you all … suffering and so brave 🙂 AS people are the strongest and most beautiful people in the world. Dont take nonsense some of the medical profession hands out. I always see my specialists imagining they are naked – this is to remind myself that at the end of the day they are mere humans and can make mistakes or be wrong. I question everything and will not be passed off in the middle of a busy clinic. Katrina’s reply made me sad, we shouldnt have to wait for fusion before something is done, that’s way to late!

    I wish I could express in mere words how precious it is to have the support of you all.

    • I see this is an old post so I have no idea if you still get messages about replies. I had no idea you suffered from this disease. If you remember Larry from Florida, please reply as I would like to get back in touch.

  10. Jane, I love your post. You sound so tough! Thanks for sharing your story. Your FB friend, Rich

  11. Hi jane i came across this blog quite by accident. I was diagnosed with AS when I was 21 but had probably had it since I was 11 years old. I also have Crohns disease Ulcertive Colitis Tintinitis and I’m I’m partially deaf in my right ear. I’m currently recovering from a double Anterior Uvitis and Posterior uvitis both in my right eye. tips for you, we are all different. I dont take any meds for AS any more not after Methotrexate gave me toxic shock and what ever I tried upset the bowel diseases which are a pain in the butt at the best of times. What I’ve found helps me tremendously is cod liver oil, garlic pearls, vitamin c , Zinc & pure coconut oil taken first thing in the morning before any drink or food & the very last thing at night, a very varied diet but nothing to excess & absolutely catagoricley no alcohol. I can recommend as a preventative for Uvitis always wear sunglass’s with green filters uv filters and polorised lens’s when ever you go outside when not wearing them avoid getting flashes of bright light directly in your eyes. Before this current Uvitis I hadnt had for 18 months when I used to get 3 or 4 a year the glass’s where the only change. this was caused by me being out in the mid day sun cutting a hedge on 15/09/2012 its going to take another 3 weeks before I’m free of again. I work full time in Hull as a civil servant. My AS is called Arthur as in “Arthurs back” when body/ parts limbs have decided not work that day. One final tip ‘MOVE’ what ever you do DONT sit around it will cripple you, it will hurt but what would you rather have painful movement or no movement at all. Its a no brainer really.
    regards Wayne.

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