Days like these.

We still have eye pain, but no diagnosis. She has (sort of) been to see two doctors in the last 24 hours. The first was yesterday morning.  The specialists that she usually sees at a huge practice were all booked up so they were able to squeeze her in with another doctor that she hasn't seen before.  He was super nice, but proceeded to tell me that they needed to put silicone plugs in her eyes to keep the tears from draining. He was convinced, from reading her chart, that she was having dry eye pain. He then proceeded to talk about her bladder? and different ways to flush out her eyes.   When I reminded him that he hadn't looked at her eyes, he humored me and took a quick peek.  What?  We left without a thorough examination or any answers as to why she is having so much pain in her eyes.

I called the optometrist that our family uses at a different clinic after speaking with the rheumatologist about what specific tests needed to be done.  The person that scheduled us said that they could do those tests, so after another painful night, I woke her up bright and early for another appointment.  When we went back for her to be examined by that doctor, I explained that we needed to rule out Uveitis, and she informed me that she wanted to get my daughter scheduled with a retina specialist (who she has been to in the past) because she wanted her to have more testing than what she could do in the office.  So, we now have an appointment tomorrow morning with the specialist I probably should have called in the first place.  Three appointments with three different doctors on three different days for the same issue. In all her years of dealing with health issues, this was a new one for us.  

My sweet, strong daughter sat down in the car and proceeded to have a very well deserved melt down. It doesn't happen often, but every once in a while she just has enough. Really, who wouldn't?  She came home to have her favorite lunch of sushi followed by a long nap.  Tomorrow she will start all over again. Visit the doctor, go through tests and hopefully get some relief.  

I really wanted to go outside and scream but I'm writing instead

So I haven't touched this blog in years. I'm here and not very happy about it.  Tonight the weight of my daughter's most recent diagnosis is weighing on me. Getting the "big" diagnosis, 22q11.2 Deletion Syndrome , wasn't the end of the story. It just means that more and more will go wrong.  I'm not being pessimistic. This is our reality.

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.