A.S. Face 0596: Carin Dreyer

It is with mixed emotions that I am doing this. Perhaps because I was only recently diagnosed with AS – it still feels unreal even though the everyday stiffness and constant pain are full blown reminders.

I am 45 years old.

As long as I can remember I suffered from back pain. Sometimes when the pain got too much, I would visit the doctor who would prescribed either pain killers, physiotherapy or both.  During the past years, x-rays was taken, scans was done as well as sonars. It always came back clear. At one point I was to reluctant to go to the doctor and would take pain killers that were easily obtainable over the counter. I started thinking that there is something mentally wrong with me.  How could I experience pain if all the tests come back clear?

We purchased another bed and orthopaedic matrass. I changed my body posture while sitting, sleeping, bending etc. With no relieve at all.

I got so use to the constant back pain. I think it was a “mind over matter” situation.

About a year ago my left heal started to pain. At first I thought I sprained my ankle. It got worse and worse. I took pain killers and applied hot and cold therapy together with anti-inflammatory cream. Sometimes it felt better, but it got worse.

I had a Hysterectomy November 2011 and while in hospital contracted Pneumonia.  I was seriously ill. Luckily we went on our yearly holiday in December 2011. For some reason  the back pain and pain in my feet was severe. I also got small spike like pains in my chest.  I did not take very much notice of it – I thought it was still a side effect from the operation and pneumonia.

In February 2012, I visited an orthopaedic surgeon. He did some tests including blood test – HLA B27. At first he thought it was Rheumatoid Arthritis and requested more blood work. He referred me to a Rheumatologist. You won’t believe … in our city there is five Rheumatologists and all are female. They were fully booked months in advance.  I got an appointment with one after a cancelation from another patient. My Rheumatologist did a thorough examination, requested more blood work and I was diagnosed with Ankylosing Spondylitis on 23 May 2012. She gave me a script for tablets that I never heard of, gave me her mobile nr and set another appointment for 27 August 2012.  She also suggested inner soles ( which I got together with night splints for my feet) and water therapy. I went for water therapy in the first month, twice a week.  Then I contracted pneumonia again. Only then did I realised that this disease breaks down my immune system.

On top of all the prescribed medication, I am taking a hand full of vitamins as well.

With my last visit she changed my medication, because the first batch was not really helping. And I can still not see any changes. I am still in constant pain – more joints are affected every day. Some days I don’t even want to get up. Most of the time it takes me about half an hour to get mobile enough to move around with comfort. But sometimes the pain gets to me.

I can’t let this disease get me down. I have such a supportive husband and two lovely teenagers. But sometimes I do wonder, don’t they get fed-up with my constant complaints about pain, Shuffling like an old woman, go to bed early and not running and playing like I use to.

My next appointment with the Rheumatologist will be end November 2012.  Both my children must get tested before then.  I really hope they test negative, because this is not something I wish on any of them.

Please find attached a picture taken of me in 2010. Due to the high dosages of cortisones taken in the last 4 months as well as the lack of exercise, I gained about 15 kg. I use to be quite active and love the outdoors.

I would appreciate if you get stay in  touch with me. In South Africa it seems as if the knowledge about this illness is still in its baby shoes.

Go well and good luck with the program.

Kind regards

Carin Dreyer

South Africa

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10 Responses to “A.S. Face 0596: Carin Dreyer”

  1. I’m a mom of 4. 2 have so far tested positive and have symptoms. I do best on norco,soma, xanax and sleeping pills and tons of supplements! Tons of fish oils

  2. You are not alone. It is just a matter of the rheumy finding the right medications/combinations for you. I experiened much the same pain and such as yourself. Do not let AS define who you are. Keep advocating for yourself. You know your body best. I hope you find relief.

    Joanne Mac Neal/fellow Face of AS

  3. Thank you for coming forward, Carin. With each step, each new face, we will be more understood and gain strength in numbers.

  4. Hello Carin, and welcome to the group here. This is a tough disease, but you know that. I say it because we need to be tough too. It’s not just the doctors in S.A. Knowledge of cause & treatment is still not mature anywhere. But it is getting better. If your rheumy knows of a research program you can participate in you will learn more about your problems and be better able to treat your conditions. Knowledge is key, so read everything you can find and learn how to best go forward as your own advocate. Good relations with rheumy can help a lot. I wish you the best Carin. These are good people here, and you will be among warriors in this fight. Brian, #503

  5. Joanne is right Carin, the Rhuemy will most likely start at a lower dose, less powerfull , medicine, and then work their way up. It’s frustrating, and slow, it’s like “take this for three months and see if it works. OK, that didn’t work, then take this for three months and see if it works.” But you’ll eventually get there…it’s inevitable. “Patience” is the new buzzword of the day.

    You can stop worrying about what your kids and husband think. They don’t think that. I’ve said it before, that I think that “kids of AS’ers will grow up to be compassionate, understanding, and caring adults BECAUSE of your AS. And I won’t stand for any guilt about not being the “bright sunny energetic mom” to your kids. It’s not your fault that you got AS. Give your teenagers some credit…I think they understand.

  6. Hi Joanne,
    Thank you for telling us/me about your journey. As my R.A. doctor told me, “give me time, it takes awhile to find the right mix of medication for each person”. Hang in there, there are “good” days for me NEVER days without pain but some days I say “If this was the only level of pain I had to deal with, I could”. That is what makes it a “good” day for me.
    The Spondylitis Assoicaion Of America http://www.spondylitis.org is a HUGE source of information and help. Please stay connected with them. You can visit the forum page and communicate with people experienceing similar symptoms.
    There are some suggested exercises as well. Some maybe you can do? I know how it feels to not beable to be as active. That is one of the things I hate the most!

    I am to visit South Africa in 2013, I look forward to seeing such a beautiful area.

    Sending my best to you,
    Jacquie

  7. Dear Carin,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  8. Feel free to look me up on Facebook. Your story is similar to mine in many ways. I live in Napa, CA , USA and though I’ve had these symptoms since childhood, I was Diagnosed in January of 2012. I’m still struggling with my symptoms, but have developed a great attitude the majority of time through networking with the AS community. We are not alone and we are not crazy. Now we know what we are dealing with so we can deal. Thank you, God! Kim AS face 332.

    http://www.facebook.com/kimberly.herrick

  9. If you would please email me at Cookiehasas@aol.com with your mailing address I will be happy to send your Faces of AS wristband to you.
    Thank you so much Cookie

  10. Carin, I am also from SA. I am face 1349. It was if I was looking in a mirror when a read your letter. I would realy like to talk with you if you won’t mind. Loma Viljoen email viljoenbcsjm@gmail.com

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