A.S. Face 0094: Tess Orr

My name is Tess Orr.  I am 42 years old and I have Ankylosing Spondylitis.  I love the glazed look that usually comes over people when I say that…..most will say something about how do you spell that? How do you say that? What is that?  I tell them that I can remember going to the rheumatologist and him telling me I either had AS or some other really long, oddly spelled disease……I told him to let me know which one and I would worry about spelling and pronunciation then.  He really thought it would be the other one (which I don’t remember to this day), but after several vials of blood and two MRI’s later – AS it was.I should point out that all of that happened 7 years ago – I was a stay at home mom of three boys.  My youngest was 3 at that point and I had decided it was time to put myself first – and get back into shape.  So I started watching what I ate and exercising.  I signed up to do a 58 mile bike ride for cancer and started training for it.  I was riding more than I had in years – and loving every minute of it.  My back was bothering me more and more – but I had had back pain since I was 16. Usually I would take a lot of ibuprofen and once in a while if it was bad, I would take tylenol at the same time – a couple weeks of this and I would be okay again for a year or so.  Now when I say okay – I don’t mean that my back wouldn’t hurt – just that it wouldn’t interfere with my life too much.  I tried the ibuprofen/tylenol routine this time – and it just would not get better.  There were times after I had been sitting for a while that I would stand up  – well, try to stand up – only I would be half way across the house before I could stand all the way up. I decided I would go to the doctor about my back – again.  I had gone before, but nothing would ever come of it.  I went this time – and they still weren’t concerned, but said ” Let’s take some x-rays so that we will have something to compare it to later.”  Okay, whatever…..I went and got the x-rays.  My doctor was concerned enough to send them to an orthopedic surgeon – who looked at them and sent me to the rheumatologist – apparently the x-rays were enough to know that there was a serious problem.  I made it through my ride for cancer – but I have never ridden my bike as much since.  My rheumy would like for me not to ride hills – which in my area is hard – so I just limit my riding again. AS has changed my life – not the disease itself – because I have had it long enough to never really know anything else, but the diagnosis……a lot of little things made sense to me then.  I had had chest pain years before – the doctors just thought I wanted “drugs” – it was my ribs fusing to my sternum – in case you wonder – it is a very painful process!!  My stomach issues – very common with AS.  With the diagnosis also came the “good” drugs – not the fun kind, but the ones that lower your immune system and come with black box warnings….but do a really good job at making me feel almost normal again.  I feel like I have two speeds now – full speed ahead – and lying in bed.  That is most of what my life has become – trying to find the balance between what I want to do and what my body will allow me to do.  I still try to do everything I want to some degree, but I now have to way the consequences and if it really is worth it.  Maybe the best part of having AS is the wonderful people I have met – talented, smart, intelligent people – that like me are doing their best to live their life inspite of AS.  AS has also made me think about what is most important to me – my family, friends – seeing and doing as much as I can – while I can.  AS is very much a part of me.  My back will always hurt.  I will always be tired……but I will also always be planning my next trip with my boys – looking forward to experiencing something new with them!!

Honey Brook, Pennsylvania

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2 Responses to “A.S. Face 0094: Tess Orr”

  1. Dear Tess,
    Thank you so much for sharing your story and your family with us!
    I love your outlook on things and your smiling ways. I understand the difficult path. I wish you the best my friend.
    SIncerely Cookie

  2. “I feel like I have two speeds now – full speed ahead – and lying in bed. That is most of what my life has become – trying to find the balance between what I want to do and what my body will allow me to do. I still try to do everything I want to some degree, but I now have to way the consequences and if it really is worth it.”

    Oh man this is sooooo true! ❤ your story

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