About 6 years ago my husband was Mr Sporty competing in athletics, sand boarding, playing hockey, volleyball, running, snowboarding, representing Mid North Coast in State and qualifying to represent NSW in the Nationals for various decathlon events (10 track and field events in one comp).
All of a sudden his back hurt bad. Real bad. We originally thought it may have been a pinched nerve. He went to chiropractors who cracked his hurting back, naturopaths for healing, many different doctors, changed his diet several times, specialist after $specialist$, massage therapists, and much more! He tried almost anything that we could think of to work out the mystery of his unbearable back pain and stop it. In the meantime he would suffer during his sleep with the pain, struggle to get out of bed, have to walk short distances and stop to lie down continuously while trying to stretch out the pain, scream out as chiros would crack away and manipulate his back, and stay standing no longer than a few minutes (we got a couple of stares at church when he was seated and everyone else was standing to sing). It was ridiculous and so difficult to watch it all and be able to do nothing!
One day, after many years of suffering, searching and still no answers, we went to a doctor who thought that maybe it could be Ankylosing Spondylitis. At the time hubby also had a flare up of Iritis (inflammation of the eye and also known as ‘Red Eye’) and this gave the connection the doctor needed and lead him to the possible diagnosis of AS. He sent hubby off to a specialist, where he had plenty of tests and it was confirmed! Finally an answer….now he just needed pain relief.
Ankylosing Spondylitis is an inflammatory arthritis that affects the joints of the spine and causes chronic pain and stiffness. It is more common in men and it lies dormant in your system for many years, one day appearing and staying for good (it usually rears its ugly head between the ages of 15-35). There is no cure for AS, but there is medicine that can help relieve some of the symptoms. Funnily enough, one of the ways to help AS is to do exercise…..very hard to achieve when you can’t even sit in a chair without agony.
To put it simply, Ankylosing Spondylitis causes the immune system to go into overdrive. The person with AS hardly ever gets a cold or becomes sick like the rest of us mere mortals. Sounds awesome, but unfortunately the immune system decides that the spine should not be moving and so busies itself replacing the cartilage between the bones of the spine into rock hard bone. It fuses the bones together. If left untreated, AS can cause complete cementation of the spine where you lose all movement and end up in a wheelchair. Thankfully we caught it relatively early, so on a scale of 1-5, and 5 being in a wheelchair for the rest of your life, hubby was between 2 and 3. If he couldn’t find treatment they predicted he would be in a wheelchair by his mid 30’s. AS can affect other tissue in the body as well such as heart, kidney, liver, lungs and eyes (which was the case for my husband).
So now we had to find a treatment quickly. Poor hubby tried various tablets with no long term relief. One day I was talking to a friend about the condition and she said that one of her family members also had been diagnosed with Ankylosing Spondylitis and he had been taking a drug called Humira, with incredible results!
Hubby talked to the specialist immediately and he decided to try him on it. Humira comes in the form of a fortnightly injection. The injection is like an Epipen where you have to squeeze the skin on your tummy and push the ‘pen’ onto the skin. The little needle pops into your skin and releases the medicine directly into your bloodstream. The drug attaches itself to the excess immune system stuff and helps his body get rid of it. Not as much pain (HOORAY), but he gets colds now. Small price to pay for a healthy spine!
While we were trying for a baby, it was recommended by his specialist that he go off Humira (even though studies have shown there is no harm if we fell pregnant while he still was on it). So since hubby has been off Humira for over a year now the ‘Ankylosing pain’ hasn’t come back as hard and fierce as before, but it is starting to get stronger recently so he will have to go back on it very soon.
It was tough going for a while there. Being in your 20’s and held back by something so frustrating and painful. The lowest moment for him was when we were driving past the beach one day and he could see two people throwing a frisbee to one another and he wondered if he would ever be able to do that again. At that point there was no way he would dream of standing up and shifting his weight like that. Something so simple in life that we take for granted. We couldn’t do much as he would want to stay home where he felt most comfortable, the future was scary health-wise and family-wise but God is good and His healing can come in so many ways.
A few years of his active youth were lost due to AS, but praise God he can now play sport, do gym, play a full 18 holes of golf and walk the course, sit up, turn his body to see things, and more…including throwing a frisbee (which he bought as soon as he could throw one and we spent an afternoon at the beach playing frisbee together).
The future is bright very bright indeed :)