I found answers the day I was diagnosed. I knew what was wrong and while it was scary it was better to me than the unknown. The first thing the doctors did was start me on a merry-go-round of medication. I struggled to find what worked. Then…just when I think everything is starting to click and my pain is plateauing I wake up on the floor beaten and broken. I couldn’t piece together what happened. My head hurt just trying to. I found out I had a severe concussion and a broken nose. Then they told me it was caused by a seizure. I honestly didn’t really believe them. I knew reality said they were right but emotionally I just couldn’t accept that. I tried to explain it away, maybe I just slipped and don’t remember it but I couldn’t explain away the multiple contusions. It happened and I needed to come to terms with it. They started poking around to find out what was happening in head. I never expected what they found, brain lesions. Turns out Remicade can lead to Multiple Sclerosis. The doctors told me that was only in people who had it in their family but I don’t have it in mine. I didn’t know what to do. I didn’t know what was next.
The doctors didn’t know what to do. I couldn’t continue taking Remicade because it would lead to more brain lesions. So my treatments for AS dwindled to a single nsaid. I couldn’t continue my pain treatment regimen because it would lower the seizure threshold and you don’t want to know what that could mean and I certainly don’t want to remind myself. So you all know that only an nsaid for treatment is not ideal. I had to start treatment to try and stop the seizures so I didn’t continue to injure myself because as we know those with AS have an increased risk factor for spinal fractures. That’s another thing I try not to think about too often.
So they all told me from now on I didn’t need to come in but once a year when I had been in every month for years. I felt as though I was being turned away like I was a lost cause. It was hopeless. My pain management specialist was surprisingly the only one who still wanted to see me which is ironic considering she couldn’t treat me. Surprisingly she found ways. She helped me start an exercise routine and supplement regimen that helped. More importantly she gave me hope instead of sending me off.
Tomorrow I’ll give you a glimpse into what being forced off meds all at once feels like. It was a glimpse into hell for me.