We had been skating along as much as we have in years( "skating" means coping after three separate reconstructive surgeries on her eyelids this summer and every other diagnosis she already had) when some new painful symptoms popped up. She was having lots of lower back and hip pain, as well as limitations in how well she could bend. This went on for a month before I remembered what I tried to forget and called her rheumatologist. You see, over a year ago, she tested positive for antigen HLA-B27. It is an indicator of some pretty nasty stuff and after I googled it and realized that not everyone that has the antigen develops problems, I decided to put it out of my mind and deal with the problems of the here and now. I successfully put it out of my mind to the point that I didn't realize that the red flags were flying.
After over a month on Meloxicam and a short course of steroids, she had an MRI of her pelvis to check her sacroiliac joint for inflammation. Her rheumatologist called that night to tell us that the MRI showed inflammation, thinning of the joints and edema. The diagnosis is Ankylosing Spondylitis and Sacroiliitis. The nasty stuff was here and raging. A week later she started on an injectable drug called Enbrel which has the potential for another set of nasty side effects but it's the weapon of choice against Ankylosing Spondylitis, so we don't have a choice. I am especially thankful that our insurance plan and her Medicaid pay for it together. The cost of her first month was 2,284.00. Tuesdays and Fridays are her injection days. Even when I let the medication warm up to room temperature, it still burns going in. I'm not certain that I'll ever be okay with giving her shots but it's what we have to do. Today was the beginning of the third week on Enbrel. She now takes Celebrex for the pain and inflammation too. Now we just wait to see if this is all going to work.
Yesterday she started complaining that her eyes hurt. We are passing around a little cold so I really wanted to believe that she was just uncomfortable from that. Then late this afternoon she started complaining again. This was after her eye doctors' office stop answering their phones. Things like this always happen after hours. Now her eyes are aching and burning. She doesn't know this but there is an inflammatory eye condition called Uveitis that can go along with Ankylosing Spondylitis. The only thing that is ever remotely positive about having an intellectually disabled child is that they don't know to google their disorders and find out how bad they can get. I will call the doctor in the morning and she will go through whatever uncomfortable tests she has to go through and probably end the day with another diagnosis. We will just put one foot in front of the other because that's what we do.
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