My Journey to Naming my Enemy…
In 2009, after the birth of my second child at the age of 33 I believed pregnancy had taken it’s toll on my body. A rollercoaster started off feeling fine and then not so fine. There is no room to be lazy when you are a mom of two and working full time. Finding myself every second month at the GP with bladder infections became ridiculous.
Then I was referred to a Urologist who found nothing to report. After returning to the Urologist he decided to do a CT scan and found sacroillitis and then referred me to an Orthopaedic Surgeon.
The Orthopaedic Surgeon sent me for a MRI scan and further blood work. The doctor confirmed I am HLA B27 positive and he referred me to a Rheumatologist and the diagnosis is Ankylosing Spondylitis.
My head played games with me for so long. Was I crazy? Is this pain in my mind? I have the pain now. I feel the pain now. How do I prove it? After a routine visit to the gynaecologist just to make sure all is fine he says to me ‘I hope your back gets better’. Huh? Seriously? So not just my pain is imaginary but so is AS to some people EVEN doctors.
For the first time I understand what my body is feeling and the pain which I cannot verbalise. That when I feel ‘old’ I am not just over exaggerating or lazy or unfit. At this point the daily pain is manageable even though I can’t stand or sit for long and have the need to alternate positions a lot. Then when it flares up every few months the pain is agony. Someone else wrote “I look pretty average and healthy. And I don’t want to look otherwise. It’s hard for people to understand that just because I’m not complaining, it doesn’t mean I’m getting better. It’s just that when you ask me how I am, I’m more likely to tell you how I am despite my disease, not because of it. I am more than that. “
After seeing the Rheumatologist on 5 January 2012 she confirmed the diagnosis. Fortunately I am in early stages and have been diagnosed much quicker than most but I have lost some mobility in my spine already. I now drink anti-inflammatory medication daily and need to find an exercise routine. In three months’ time I will go back and will check on the progression.
So this marks the beginning of acceptance for me. I have AS. Nobody will see it. Few will understand it. Many will dismiss it. But I know it. My pain is real. It is daily. Although it fluctuates it is here to stay.
At least now I know I am not crazy and I will do my best to live life to the fullest despite and because of AS!
Pretoria – South Africa