It’s easy to find joy when exciting things are happening. Each day seems full of new possibilities. And the sky is the limit when it comes to dreams. But what about the unexpected changes? The dark times? Where is the joy then?
I started off this year full of dreams and ideals. After 6 years of difficult pregnancies and Post Partum Depression, I’d finally come out the other side. I’d survived! As I healed physically, emotionally, and spiritually, I started looking toward the future. I had big dreams, and I was sure God was behind those dreams.
Then, in less than a week, all those dreams came crashing down. And, to be honest, I’m floundering a bit right now. I’m confused, hurt and more than a little scared. I thought my dreams and plans were from God, but now everything is changing.
Memorial Day weekend we were in MA visiting special friends. The stress of a big church remodeling project and Jonathan’s ordination were behind us. We were having a wonderful time and looking forward to a great summer. It had been years since I felt so well physically. We spent the time on the 9 hour drive to MA making plans for our future.
Then on Memorial Day, I had an episode where I almost blacked out. The next day I had another one. Over the next 3 days, the episodes got longer, stronger, and closer together. (Can you tell I’ve had 3 kids–it sounds like I’m describing contractions!) I was getting scared, but determined to make it home before going to the doctor.
We arrived home on Thursday night. By Friday morning, I couldn’t even walk across the room without feeling like I was about to pass out. So Jonathan drove me to the ER. Do you want to know what is my new definition of humility? Sitting on the ER floor with my head between my knees because I couldn’t make it to the registration desk. My pride took a tumble, for sure!
And it was there in the ER I first heard the acronym POTS.
Postural Orthostatic Tachycardia Syndrome–a failure of the autonomic nervous system to regulate blood flow throughout my body. My heart rate was fluctuating 70 beats per minute trying to get blood to my brain. I was light-headed, unstable, tired, and couldn’t think clearly. Four days later, after a tilt table test, the diagnosis became official.
At first I was relieved. I really was! I had a diagnosis. The cardiologist knew what was wrong with me. My heart was fine. It wasn’t terminal. They didn’t find a brain tumor on the MRI. Yes, I couldn’t walk across a room. Yes, there is no cure. But I knew what was wrong with me.
Then came our attempts at establishing a new normal. Our summer plans changed from hikes and trips to the beach to doctors visits of all kinds. We crossed plans and projects off our to-do lists, because we knew they weren’t going to get done. People from church brought meals or Jonathan cooked. Slowly we got started getting used to the fact that many days I couldn’t drive. Some times folding a load of laundry was a huge accomplishment for the day. Other days I felt almost normal.
I went through our schedule and assigned the kids new chores. It no longer seemed crazy to have a 5-year-old clean the bathroom. We canceled more projects, trips, and plans.
I’m actually doing a lot better now. The cardiologist started me on a beta blocker a few days after the tilt table test. It doesn’t solve the poor blood circulation or the brain fog, but most of the time it keeps my heart from wildly fluctuating, which helps with the light-headedness. On my good days I’m able to drive short distances or pick up a couple of items at the store (as long as there are no lines!). I can live an almost normal life about 1/3 of the time. Even on my bad days, I can usually get out of bed. But I have to be very careful not to overdo. If I attempt anything close to what I used to accomplish, I pay for it with several days where I can hardly sit up. During VBS, people at church got used to seeing me lying flat on my back in the nursery or a corner of the sanctuary, trying to get some blood back up to my head.
In March I began to think God wanted me to change the focus of this blog. When I got diagnosed with POTS, I wondered how that would play out. But I think I’m getting a sense of direction. And, actually, what’s been happening recently goes well with what I thought God was showing me last winter. I’m still formulating things in my head and my heart, but I’ll keep you updated!