A couple of days ago was the World awareness day for Ankylosing Spondylitis so I thought I'd write my story.
Ankylosing Spondylitis - a painful condition
Many of our customers and happy Snoozle users suffer from Ankylosing Spondylitis (AS). AS is a nasty inflammatory disease that affects the back, hips and other joints. It's a type of arthritis and is a chronic condition. I wish I didn't know a lot about AS, but I do because I have it.
It started in pregnancy
It started when I was pregnant with my first child and wasn't diagnosed until my third child was 1 years old. I had no idea I had AS when I was pregnant and was told I had Symphysis Pubic Dysfunction (SPD) that is now usually called Pelvic Girdle Pain (PGP). However, my midwife and physiotherapists did tell me that it was unusual for the pain to be mainly in the Sacroiliac joints (a pain in the butt, literally) but not so much in the pubic bone, although that hurt too! Nobody suspected I had AS, even after I spoke to numerous doctors and healthcare workers and told them I had a lot of post-partum PGP.
I was suffering quite a lot after I gave birth to all my children and kept waiting for the pain to go away. I did sense that something was really wrong but nobody listened to me. I was diagnosed with Fibromyalgia and told to take walks (even if I couldn't put weight on my right leg after 5 minutes of walking) and see a physiotherapist. 2 physiotherapists told me after numerous sessions that they couldn't help me, I still couldn't walk and was in constant pain, stiff and exhausted, and thought I'd just have to learn to live with it.
A diagnosis - finally
It wasn't until I found a great rheumatologist (the second rheumy I saw) that I got a proper diagnoses after having x-rays and an MRI to confirm that indeed I had some damage in the SI-joints and other symptoms that fit the AS descriptions, like a swollen Achilles tendon and lots of pain and stiffness.
This was over 3 years ago and I'm still trying to work out a proper treatment with my doctor. I've come a long way and can now walk for 30 minutes without a lot of pain and can finally enjoy life a bit more.
The experience wasn't for nothing
I've learned a lot from this experience and now preach to every woman that suffers from post-partum PGP to shop around for a good doctor and don't give up until they've been properly seen to. If you're still in pain long after your baby is born you need to have blood tests and X-rays or an MRI to see what is going on and if there's something that can be done. Some women end up having a pelvic fusion surgery, some get better after physiotherapy and those like me who are diagnosed with AS or other inflammatory diseases can benefit from good drugs that are out there.
Some days I do get a little bitter and wish that my AS in pregnancy hadn't been mistaken for PGP and completely dismissed. That my previous doctors had listened to me and believed me when I described my pain to them. Maybe some of the damage in my joints could have been prevented with anti-inflammatory drugs if it was caught early. But there's no use in wallowing in pity ;) I'm thankful that my pain is now manageable and that it has led me down this path, to start a business making a product that really helps women in my situation. If I hadn't gone through all this, the Snoozle might not exist! Reading the customer reviews and thank you emails makes it all worthwhile to me.
Lilja Th. - Co-founder of the Snoozle maternity slide sheet