Avoiding the Rabbit Hole

The struggle has been real folks. My first week home was anything but easy. In fact, it was probably one of the most emotionally challenging weeks during these 11+ weeks of IVs. 

When I got home from the hospital last week, not only did I feel physically terrible but I had two more episodes of bleeding from my lungs last weekend, one of which was another big one. This was discouraging, frustrating, and disappointing. For the first time in years, it was hard for me to see the light at the end of the tunnel. 

Thank goodness I have an amazing team and a hematologist who answers her pages on a Sunday. She added a second clotting medication (commonly used with hemophilia) to help stop the bleeding. There's been mention of another surgical procedure (pulmonary embolization) if the bleeding continues once I finish the clotting meds, but I am desperately hoping that's not the case!

The thought of another embolization makes me feel fearful and anxious. But this is nothing new for me; most of my anxiety stems from leaving the present moment to travel down the rabbit hole of future 'what ifs.' This is why I work so hard at staying in the moment. After all, most future 'what ifs' we worry about rarely come to fruition, right? So I've been working on returning to the present moment and it's been helping a lot.

I finished one of the clotting meds yesterday and the other I'll finish today. My "big" bleeds have oddly been happening on Fridays, so I'll be able to let my guard down once I make it through this weekend. 

The other downside to lung bleeding is that I have to hold my respiratory vest and nebs. This has definitely set me back and given my bugs the chance to thrive. I've also had to hold my blood thinner, which prevents blood clots in my lungs and upper extremities. Apparently, the human body has quite the sense of humor: In some areas my blood clots too much and in others, it can't clot enough. What a hilariously fun tightrope to walk (not!)

At least my body isn't the only one with a sense of humor and I've remembered to squeeze in a laugh wherever I can. Sometimes, if you don't laugh, you'll cry, and laughing happens to be great for shaking things up in my lungs.

I've slowly been able to phase my therapies back in, which is definitely helping. Another good thing to come out of this week is that I finally found the energy to start walking on the treadmill again. It's been at a snail's pace, but the journey of a thousand miles begins with one step (Lao Tzu) and I knew if I ever wanted to get better, I best get stepping. 

Tomorrow (Thursday) I head to CF clinic to see where my breathing tests are, etc. On one hand, I'm hoping they discontinue the IV antibiotics and pull my line. On the other hand, I'm petrified to stop antibiotics out of fear that another boot will drop around the corner. I guess that's another way staying in the moment comes in so handy; I'll just have to go with the flow and see where the day leads me.

This quote from an old blog post has been hanging near my treadmill for years and has certainly been pertinent the past few days: