Finally, two years after we started a very strange and long journey after a cancer scare we have a diagnosis. That’s the good news. The bad news. We’ve been spitting up blood for one year and one week and still have no clue why but maybe we have a little hope.
Before I dive in, I have to say this. I’m exhausted. The past two years I’ve fought with so many doctors that I’m shocked I’m not banned from our children’s hospital. I’ve been frustrated when they decide that whatever symptom we have isn’t their body part and they exit the picture. I’ve pleaded with all of them to talk to each other and even demanded that the head of Pediatrics take us on as a patient to help us coordinate care. Yet, at the end of the day, the reason we finally got a diagnosis? I emailed a doctor directly and asked for help.
Yes, you read that right. The reason we finally got help? All my researching, fighting and mother’s intuition finally paid off. That and the fact that I blog.
I wouldn’t have known who to email if it wasn’t for a delightful teenager who found me last year through my blog and asked me for a little advice about homeschooling. She, like my Rosie, has chronic migraines and hadn’t been able to attend school. We became friends via Facebook. Over the summer she started the RAPS program at Children’s Mercy for Amplified Pain Syndrome. She reached out to me and mentioned that one of the girls in the program was bleeding from her ear. In October, when Rosie’s ankles were still swollen after her blood pressure issues resolved, she tipped me off again. Not only was the other girl bleeding, her ankles were swollen as well. She encouraged me to email the doctor. I did and twenty-four hours later we had an appointment in two months.
We didn’t really need to wait that long to figure out part of the puzzle. When we went to the Vestibular Therapist a few weeks later, I mentioned the appointment. From our evaluation, she suspected that Rosie had Amplified Pain Syndrome. Thank God. I honestly don’t think that we would’ve been prepared emotionally for the appointment we had last Friday with the Rheumatologist if it wasn’t for her. She prepped us for it two days before and it was hard. We had to talk about some tough stuff. Things that I had thought about before but really never mentioned to my teen because it was so heavy.
We’ve talked a lot the past year about chronic illness and how hard it is to have an invisible one where you look healthy but aren’t. What we haven’t really publicly acknowledged is what it’s like to be disabled. When you can’t go to school and you can’t dance any more there’s a problem. If you have to cancel plans because you feel terrible all the time and can’t keep appointments because of pain, that’s a big deal. When you start talking about needing a handicapped hang tag for your car, that’s when you know that this is a huge problem and that’s where we are. And, we had to admit it. That sucked and so does the diagnosis.
Rosie has Amplified Pain Syndrome and it’s cool to finally here from a doctor that the pain she feels is 100% real. (If you’d like to learn more about it, please click here). It’s also cool to know that all kinds of bizarre symptoms that she’s had for two years like the strange rash can be explained. It’s also amazing to know that the swollen ankles are not in fact a kidney problem. And, that the fact that Rosie can have one ice-cold hand and one hot one isn’t abnormal. Her pain is accompanied by autonomic dysfunction, hence the POTS. But, here’s where it gets hard.
My teenager is in pain 24 hours out of every single day. In fact, she has Allodynia. What does that mean? When you touch her skin, she is uncomfortable or in pain (depending on the spot) all the time. Can you imagine someone reaching out to lightly tap you on the arm and it causes pain? Probably not but that’s what my daughter experiences.
I’ve known for a long time that she has a low pain tolerance (that’s a red headed genetic thing) and even worried about injuries that wound up being bigger than they should have been over the years, but I had no clue until November how bad it was. She had Botox injections which should have worked for her migraines. Instead, they caused muscle spasms and such bad pain, she couldn’t move off the couch for a couple of weeks. It was awful and frustrating. But, finally we know why.
Two years ago, my child had a virus that turned into a bad infection and then a devastating sports injury. As the Rheumatologist said, “It was the perfect storm.” When we got the POTS diagnosis, I could pinpoint that time as the trigger for the autonomic dysfunction. It was also the trigger for the Amplified Pain Syndrome and as time’s gone on over the course of the past two years, the pain has gradually gotten worse. Of course, adding additional health scares haven’t helped. Every symptom that Rosie has the doctor claimed except the spitting up blood thing.
So where are we?
It was comforting to get a diagnosis yet scary at the same time. There’s no magic pill. At the end of the day, it’s up to Rosie to do a lot of hard work to get better. Since she’s also having Vestibular system issues from a concussion, it’s not going to be easy. She has a long road ahead of her.
I’ve been asked by the friends that I can count on my fingers that I’ve told how they can help. First, I have to say this. We’re not going gluten-free, taking magic supplements or anything else that you’d like to recommend so please respect us and refrain. Okay, getting off my soapbox. Here’s how you can really help. If we haven’t seen you in a while, chances are we’d probably enjoy some company. While we enjoy being around each other, we’re both a little lonely. Come on by!
The best thing for Rosie right now is to get up and moving around. Stop by and take her for a walk around the neighborhood or encourage her to go to dance class and just do what she can do. Shoot her an encouraging text message. Tell her that you’re here for her and urge her to actually talk about what’s going on. Bring her a craft kit, coloring book or some clay as she responds well to art therapy. On a bad day, spend an hour watching Netflix and laughing. That’s therapy too. Just be there because illness is such an isolating thing.