This last year has been the most difficult year of my life. Started the year waiting for transplants, and ended it still waiting. Many new and/or worsening hurdles that have come to be major concerns. My husband of 10 years asking for a divorce in the middle of this health crisis. This is all too much for anyone- it truly is. But I wish it wasn’t so easy to walk away from. Or at least that I could just walk away from it all too. I’m having to do things I could never have imagined, like breaking my heart in rehoming my cats- my children, because I can’t care for three cats by myself now, not for a while. I wish that it wasn’t entirely on me to find good homes and people, but it has been made quite clear that this is another responsibility that is too much for a perfectly healthy person. All this said, its been wonderful being able to do things like decorate my home and not have to compromise over how much is too much. I’m coming back to who I am and it feels incredible.
A few weeks after the divorce surprise and days after my birthday, I landed back in the ICU for 3 weeks. My IV port had developed an infection and I’d gone septic. As is usually the case, I lost a lot of strength. My weight has been a major issue and was worst in the middle of my stay. I’ve started on tube feeds to supplement whatever I can eat, but it exaggerates my nausea and pressure in my belly. At one point, they stopped the tube feeds and I wasn’t eating at all. I got down to 80 lbs. Finally though, I started to feel hungry. We found a delivery approach for my tube feeds that minimized the symptoms and I definitely seem to have gained some weight. The tube will likely be a treatment until transplant, so that I can maintain and build as much strength and weight as possible for recovery.
They finally let me go home a couple days before Christmas and it has already been a roller-coaster. This was probably the best Christmas morning I’ve had in years, thanks to the Simbolis. I got some incredibly kind gifts and well wishes, and have felt so much love pouring and overflowing into me. I finally got to see Wicked! Wow. But I’ve also been dealing with some debilitating edima in my feet, legs, and then slowly my hips, my stomach, and one arm. Its been bad enough that I have cracks in the skin that will likely scar. This is also why we can’t be certain how much weight I’ve actually gained. I can’t always stand myself up on my own. If I didn’t have Pamela Simboli, Denise Lyons Hare, and Uncle Jim, I would probably have to be at a rehab facility due to all this. BUT, it finally seems to be responding to treatment. I can bend and move like I do actually have joints. It’s sooo SLLLOOOOOWWWWWW, but its improving. Periods like this make it hard to feel anything other than I’m sinking in quick sand. But I’m starting to really concentrate on the points of relief, not the big light at the end, and that makes it easier to catch my breath.
2024 was really shitty. I’m still desperately waiting. But I’ve learned that I have a seemeingly immeasurably deep well of life within me. That, while it’s still really uncomfortable to accept or to ask for help, doing so just gives me a shoulder to lean on in order to tap into my own life strength. And that people WANT to help. Thank you to everyone who has prayed, reached out with words of support, donated, and kept me in your thoughts. I plan to still be here nexy year at this time, at whatever point in my journey I’m at. Still seeking out moments of relief. Moments of joy. Drawing from this deep well that my tired and overworked body is still affording me. In a home that is unabashedly mine. Crafting and joking all the way.
Welcome 2025. Let’s dance, you and I.