A.S. Face 0089: Audrey Ross

Audreyaudry dan

I am 47.  I have had chronic joint pain since I was 29.  I was misdiagnosed for years, had hip surgery (bursa removed) and had all sorts meds that didn’t help.   For 15 years I had cortisone injections in my spine and hips every 3 – 4 months which were excruciating but did help for a small period of time.  I was finally diagnosed with AS 3 years ago and by this stage, it was progressing rapidly and I had limited movement in certain joints.  23 months ago, I was put on Humira injections which have helped immensely although I do still have the odd flare up in my smaller joints and breast bone and have to ride the storm.  However, I do have more movement and flexibility back but I am terrified that this won’t last.  I have recently been getting eye problems and the irritation can sometimes be unbearable.

This is a horrible condition, we are stuck with it for life and each individual has no idea how or if it will progress to the point where our joints will seize up all together or if it will remain the same.  It’s a scary thought not knowing what our future holds and I am sincerely glad that there are people in the same position who are trying to make others aware.

I hate that no one understands what we go through, I have given up even trying to explain to anyone how it feels.

Two years on and although I still get flare up’s, the Humira is still working it’s wonders.  I was pain free for our wedding last September and danced most of the night with my wonderful husband, family and friends.

My darling Dad was too ill to attend our wedding but he was with us all day in our thoughts and hearts, he sadly passed away shortly after the wedding.  We cancelled our honeymoon so that I could spend as much time with him as possible.  We are all still heartbroken and miss him every day but as promised to my lovely Dad, we rebooked the same trip and are heading off on a Mediterranean Cruise on 29th May.  I can’t wait to be ABLE to walk around Nice, Monaco, Naples, Rome, Florence, Venice, Dubrovnik and Montenegro….. I will be off that ship at every opportunity and soaking up every bit of our holiday.

Good wishes and love to you all,
Audrey

Aberdeen, Scotland


10 Responses to “A.S. Face 0089: Audrey Ross”

  1. Dear Audrey,

    You have had a hard time, as I have. It is one of the main reasons I started this site, to help make people aware of our reality. For those of us, who can’t find the words to explain to others, I hope they will use our stories.
    Sincerely Cookie

  2. Hi Audrey, thank you for sharing. You said you get breast bone pain. What does that pain feel like? Currently it feels like my chest is on fire. Feels like my chest by the breast bone is inflamed. With the occassional sharp pain. Is that how you feel?

  3. Hi Cookie

    I hope people take notice and finally we can receive some recognition and understanding of what we go through.

    Hi Jenny – That is exactly how mine feels, I want to curl my shoulders inwards to get relief but know that it’s best to stretch backwards. One way I do got a bit of relief is to lie on a hard floor on my back and gently push the palm of my hand into the middle of the breastbone (although the pain feels like it’s coming straight through and out of my back) it really helps for some reason. While lying on the floor I also get someone to gently push my shoulders straight into the floor, it’s bl**dy sore but it really does help to stretch the breastbone.

  4. Audrey thank you so much, I agree about the fear of not knowing – being overwhelming 😦 Hang in there! and thanks for sharing with all of us. (my breastbone is being effected now too – and this I am not used to. SI pain is more familiar)

  5. Hi Audrey.
    Aberdeen, Represent!

    Glad to have found you on here. Im just back from an appointment at the rheumatology department today and have seen your comment, how bizarre 🙂

    How have you found things in Aberdeen hospital for you? I get a lot of relief from Humira but cant help but think it wont last forever. I hope this is typical Aberdeen pecimism and not the true case as we tend to live life with our glasses half empty up here. Myself and my partner Joanna would love to meet you. Ive never spoken to anybody else face to face with AS and would love to share experiences and have a good old moan with you.

    • Joe, apologies for my very late reply. I got married in September and have been busy organising everything for the last 6 months and not been on my page. Would love to meet up for a chat about our personal AS experiences. I’ll add you to my FB page and we can Organise a meet/moan.

  6. Hi. I also have been taking humira injections for about 8 months now. I have found that I have been able to move around better and get back to work, but I feel like more pain and problems just keep accurring between the jaw pain and still the burning thoughout all of my joints and muscles. I did have alot of chest pain for over 2 years and it would not go away. They had done an MRI and found that I had a bruise in my chest, but when the pain was shifting from the left side to the right and the bruise was not healing the doctors basically told me they didn’t know what to do for me. My pain felt like someone had hit me in the chest with a sledgehammer (not over exagerating) and breathing was painful. To get a cold was my worst nightmare!!!! I haven’t had that flare up for over a year, but really do fear for that one to come back!!!! Very painful. Thank you for the advice and what worked for you!!!!

  7. Audrey: I wholeheartedly agree with you–the part about having to explain it to others gets so old–then they say things like, “Maybe if you get a massage it will help.” With this group, I feel like I am not alone. I was getting very depressed thinking I was alone, but now, I feel as if I belong to a family who understands just what is happening. Thanks for your posting! Stephania #445

  8. Audrey, I hear you ….. Not sure anyone that doesn’t have this has a clue. It is frustrating. I pray for a cure to be known and hope for our hearts.
    #480

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