I have four children – a ten year old and seven year old triplets. A few years ago, two of the triplets were diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified). Nice label, huh? Basically it means that they have enough delays across the board to qualify them for the Autism diagnosis.
When we got the official diagnosis, I wasn’t traumatized. I wasn’t even upset. I had known in my heart for at least a year that they were on the Autism spectrum. So, if anything, it was a relief. It validated that I was not crazy. But on the way home, my feelings about the diagnosis started to change. The fear of the “A” word; the stigma that was attached to it; all of these things started to overwhelm me. But when we got home, and we all cuddled up on the couch, I realized that nothing had changed. My boys were the same that day, as they were the day before their diagnosis, and they would be the same crazy boys the day after. The diagnosis had changed nothing.
Years later, I find myself in a similar predicament. A laundry list of medical symptoms and a mommy-gut instinct that tells me something is definitely wrong. But every medical test comes back the same – inconclusive. I’m about to make up my own diagnosis: PPFD-NOS (Pervasive Pain Fatigue Disorder – Not Otherwise Specified)!
A few months ago, I discovered a round rash on my ankle. I wasn’t sure what it was, so I Googled images of Ringworm. My rash looked similar to those in the pictures, so I assumed that was it. I’ve got a house full of rug rats running around, so it seemed very possible that I could have contracted it from one of them. I put some cream on it and soon it disappeared. It wasn’t until two months later, when I was being tested for Lyme disease, that I even thought about that rash again. I had been on antibiotics for a week (for what I thought was a sinus infection) and my symptoms continued to worsen. Aside from the headaches, pressure and back pain, I now had jaw pain (which I have since learned is a cardiac symptom for women). As soon as the words JAW PAIN left my mouth, I could hear the change in my doctor’s tone. He sent me to the ER fearing I was having a heart attack. I knew my heart was just fine, and that it was going to be a huge wast of time and money – but at the same time I was hopeful that while I was there, they would figure out what WAS wrong.
Thanks to the wonderful world of technology and blogs like this one, I realized that all of my symptoms were classic Lyme disease. What I also learned is that there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results.
With Autism there’s this hope that once you receive your diagnosis, you will now have access to all of the services and therapies that you need. Well, that’s not exactly the case. Yes, the diagnosis gets you access to treatments, but they can be extremely expensive, and not everyone on the Autism spectrum responds the same way to every treatment. Therefore you often find yourself fighting for therapies that may or may not help. With Lyme, the treatment is simple . . . antibiotics! Sounds easy, right? And you would think that since I had a bulls-eye rash and this huge list of symptoms, the diagnosis would be the easy part of this whole process – not so much! So, far two Lyme tests were done and both came back negative.
Now my journey begins, trying to be proactive and be my own advocate, while at the same time trusting in God’s plan. Similar to our cross country move that never happened, I know that God will open and close the right doors for us. But there’s a fine line between praying for a door to open, and trying to knock it down yourself. “He will cover you with his feathers, and under HIS wings you will find refuge; his faithfulness will be your shield and rampart.” Psalm 91:4