Bloggers are known for annual recaps. It gives readers that have been around a long time the chance to reminisce and new readers the chance to see some great content that they may not have stumbled upon. This year, I’m doing two Top 10 posts. Why? I feel like my blogging life has been split into two parts; the parenting and lifestyle segment and the chronic illness/parent advocate segment. I never intended for my blog to have an illness focus but face it, I never planned to have a sick child. Nevertheless, I hope our posts help others because having an undiagnosed illness is scary and most people don’t know where to turn or how to behave.
Here are my Top 10 Chronic Illness Posts of 2015
If you sit in enough waiting rooms, you meet lots of parents. We all have the same kinds of stories about friends that seem to act a little different around us or don’t know what to say. There are also friends that you lose along the way. This post is not only applicable to anyone that has a friend with a sick child, it works if you have an adult friend as well. The biggest take away? Just be there for them. People forget that while you’re out celebrating the holidays, we may be here at home or at the hospital.
My daughter started spitting up blood in December 2014. After three months of seeing specialists here in Kansas City, we drove to the Mayo Clinic. While it was a complete waste of time when it came to the blood, Rosie was diagnosed with POTS. We learned a lot about autonomic dysfunction and how it can disrupt your life. I also learned that it’s important as a mother to listen to your child and document everything. Because I was diligent, I had a pretty good timeline on when her symptoms started and we got on the path to try to get them under control. Since this post, I’ve had parents contact me to discuss their child and thank me for helping me put the pieces of the puzzle together for them through blogging.
I have to admit, I wrote this post a little prematurely. In December, Rosie was diagnosed with Amplified Pain Syndrome. We finally had answers to many of our medical mystery questions. However, as the month has gone on, we’ve discovered that not everything that’s wrong can be attributed to pain. Rosie’s still spitting up blood. In fact, we were in the emergency room Christmas Eve. That can’t be explained by Amplified Pain, it’s just one piece of a complex puzzle.
I still believe in my soul that there’s some underlying genetic reason why my teenager’s spitting up blood. Since this post, we’ve learned that Rosie does not have a bleeding or clotting disorder. We’ve also gotten a negative HHT test but they’re not reliable. Last month, I sent all of our records to Washington University in St. Louis where they have an HHT center for review. Maybe they’ll say they think she has it. If not, hopefully they’ve seen a case like hers before and can steer us in the right direction.
I wrote this post as we returned from Mayo. Both of us were frustrated, but I was trying to stay positive. We weren’t quite ready to talk about the POTS diagnosis quite yet, just the confusion we felt to drive all the way to Minnesota to be told, “sometimes we see kids that spit up blood and we can’t figure out why.” Maybe you can’t figure out why because you don’t try. Just saying.
I wrote this post last January in the middle of all the initial search for answers. It’s interesting for me to read. It was just the beginning of our journey, yet somehow, I knew what I needed to do- be a solid advocate for my child and continue to press for answers. I remember this dermatology visit vividly. Until you have an entire room of doctors looking puzzled at your child’s skin, you have no idea what it’s like to feel a little bit freakish. It pissed me off. So, I created a Go Fund Me campaign to get us to Mayo. Thank you to everyone who supported us. Not only was our trip paid for, our insurance premiums were too until my husband could get a job. In the middle of all of this, my teen was able to go to rehearsal and actually dance. It was a great day!
At the top of the year, I chose the word “joy.” I should’ve chosen the word frustrated because honestly, it’s been the underlying theme when I’m dealing with doctors, school and just about everything. In this post, I was trying to get more GI tests scheduled and the hospital wouldn’t schedule a surgery until we saw the cardiologist for Rosie’s POTS. It was another delay. And, in case you’re wondering, that graphic was created from an image of my child’s blood.
At the request of our pulmonologist, we headed to the hospital with a bag of Rosie’s blood in January. Here’s what I’m going to tell you about that- hospitals do not care when you walk in with a live specimen. They throw it in the big red bio-hazard bag when you leave. How do I know, it’s happened to us a number of times this year.
I wrote this post because I was getting all kinds of calls and emails after we got the diagnosis. I figured it was an easy way to let everyone know the treatment for POTS. Since then, we’ve had all kinds of problems because the POTS medications caused Rosie’s blood pressure to sky rocket. So, we’re back to treating her autonomic dysfunction with water, salt and exercise. Doesn’t work as well as the drugs and that’s a bummer.
There’s nothing that gave me more joy this year, than saying goodbye to our past pediatrician. Not only did they scare the crap out of us with a cancer scare a couple of years ago, they didn’t diagnose my teen correctly the following year when she had Mycoplasma. We moved our care to the pediatric department at our local children’s hospital with the hopes that we’d have better care coordination. We have but we’re now on our second pediatrician and starting over. Good news is, he’s wonderful. We’re hopeful.
Whew! That was a lot of doctor’s appointments and lots of potential answers that really didn’t pan out. It’s interesting to look back at our journey. When I read my chronic illness posts, I see a lot of positive thought, hope and yes, some frustration when we didn’t get answers. Still, moving into 2016, Rosie and I are full of optimism. She goes back to school next week. That’s a huge step.
I’ll also be taking a huge step with this blog in the upcoming year. Last year, I wrote these chronic illness posts as updates and only promoted them once on social media to update friends and relatives. What I didn’t realize, is that they would help a lot of other people searching for answers for their kids or just living through invisible illness themselves. There’s a certain amount of comfort that you get when you realize that you’re not the only one in the world experiencing medical hell. It’s nice to know that someone else gets it. That they’re fighting the fight and can tell you how too. So, I’ll be writing more about illness and promoting it more often.
I’ve wondered about starting a new blog with just a chronic illness focus and have decided against it. Here’s why? We’re not defined solely by being sick. We still laugh, cook, craft and have fun. That’s a part of our life and our story and I think it’s important for people to see that you can still smile in the midst of unanswered questions, doctor’s appointments and feeling like shit. Chronic illness doesn’t have to take over your entire life. That’s a message I think people need to read.