Look around, look around at how lucky we are to be alive right now

In 3 days it will be my one year anniversary of my Jpouch reconnection surgery. Damn, it's been quite a year. Since my last post in December, I am happy to report that I have seen incredible improvements in my health. It all really started with saying goodbye to my old team of doctors (see my November 19th post about breaking up with doctors) and finding a new team of respectful practitioners who have strategies to help me improve. I was diagnosed with pouchitis (inflammation of the jpouch) and here is the description from the Mayo Clinic: "Pouchitis is a complication of J pouch surgery. It occurs in about one-quarter to nearly one-half of the people who have the procedure. Signs and symptoms of pouchitis can include diarrhea, abdominal pain, joint pain, cramps, fever, an increased number of bowel movements, nighttime fecal seepage, fecal incontinence, and a strong urge to have a bowel movement." Minus the fevers, that was my experience from March 21-December 1. So, the new doctors put me on antibiotics. Antibiotics helped about 80% immediately, and 11 weeks later I'm still on them while we tweak everything else to get me to 100% health.

It's been so amazing to feel more secure in my body and not spend as much energy dealing with the physical and emotional challenges. One of my biggest highs was going to see Hamilton on Broadway over February vacation. I also got to visit family and friends and walk around New York City without a care in the world. Also, I've had more energy so I'm spending more time with friends, stepping a toe into the dating world, and going to yoga classes on a regular basis. 

Despite these incredible improvements, there are still hurdles too. I've experienced weeks where I backslide (something I ate? stress? other?) and have watery stool making it difficult to get to the bathroom in time during the day and at night.  Then, this Friday night I had a small intestinal blockage. I haven't had one since October and I almost forgot how quickly they come on and how painful and frightening they are. Fortunately, this one passed after less than 2 hours at home, but it certainly brings back past experiences of needing to go to the ER and reminds me that these will probably pop up from time to time without warning. I'm grateful for those who have shared stretches and tricks to break up the blockage- I think those helped this time. 

My emotional state is also impacted by the improvements. Even when I'm having a great day, sometimes at the most random moments, a wave of emotion comes over me. Sometimes it's when I'm doing something fun that would have felt impossible in the past and other times is just when I'm alone at home without a distraction- like when I wash dishes. I think it's probably a lesser version of PTSD, and I will get flashbacks to horrible experiences or feel an overwhelming sense of gratitude about the joys I'm experiencing. Fortunately, during all my hurdles, I have a great support team of doctors now, not to mention amazing family and friends! 💗💗💗 Soon, I'll get to add a psychologist from the GI department at the hospital to my team for a few sessions. I've been looking for more holistic care for years and I'm so glad that hospitals are recognizing the psychological impact these diseases have on patients and providing supports. 

So, the journey continues and will probably go on for all my days. A big part of this journey has been about physical health, but an even bigger part is about relationships. It's about knowing that as much as you are hurting those who love you with this illness, it's trusting that they want nothing more than to be by your side at your hospital bed or at your home. It's also about your relationship with yourself. Trusting yourself, knowing that you are more than your limitations, having confidence that others will love you for more than this and love you FOR this. For all that it's worth, this spiritual journey has certainly brought me closer to myself and helped me be kinder to myself. 

A series of poetic meditations "Live Awake" by Sarah Blondin have been a saving grace for me in the last year. When I was in the hospital and all I could hear were beeping monitors or when I got home and had leaks at 3am and the burning skin put me in so much physical and emotional pain that I couldn't sleep- she gave me 10 minutes of peace with her meditation "When You Must Endure."

I want to share with you part of the meditation "Things I Wish Someone Had Told Me" because how often do others tell you that you are doing amazing at life? And how often do you compliment yourself on being you? Probably not enough:

"I want to tell you no matter where you journey, no matter what the landscape appears to be, you are being held, you are being loved, you are exactly where you need to be. I want to tell you that you, you are already enough. That there are no holes to be filled, no cracks to be plastered. You are already enough and everything you need is within you, rising on your breath and on your heart's beat."  - Sarah Blondin