I feel the need to do this. So just let me.
I’m on day 7 in the hospital. This time I have CDiff, fluid in both lungs, an infection of the blood, and paralyzing gastroparesis making eating impossible.
Eating has actually been impossible for several months now. Getting worse and worse as time went on. The doctor had a nurse coming over to give me hydration via my port. Which turned into months of me not eating and only living off the IV in my living room. I’d sleep a lot. I’d pick up the kids, take them where they needed to go. Get some sort of dinner on the table. And fall back on the couch exhausted. When you don’t eat it takes everything in you to just shower.
For some of this time I was on steroids. For the second half of the IV, couch, IV, couch life I was finally weened off the steroids and the weight has begun to drop off. All those years of steroids coming off in a few weeks’ time. I’m down to almost a normal weight for me. A heavy normal, for sure. But it’s still falling off and I can’t imagine it will be long before I’m looking like myself again.
That is if I get much further.
There has been an ominous feeling about this illness and this bout, in particular, looming. I came to the hospital knowing my stomach was bad and the CDiff was probably causing it and finding out my lungs are bad and my blood is sick. Nothing about this stay feels hopeful.
Even the procedure I will have in the morning isn’t hopeful. It’s a stop gap to get some nutrition in my body. I’ll be getting a tube in my stomach so I can be fed like an invalid. My stomach isn’t working and we don’t expect it to work anytime soon. So this is the next step in keeping my organs going.
I’m not feeling good about going under in the morning. And for all of these reasons and more I want you all to know I love you. Yup, even you, reading this because you heard something happened and you wanted to see what I had to say.
Take care of my babies. Take care of my husband. They will need it. Keep my family in your thoughts but more important make sure they are all doing what they should be doing. Aaron needs to be rocking out and making the pretty pictures on the big screen. Jack needs to be inventing and finding himself during this confusing time. He’s a mamma’s boy. Remind him to dream big and flamboyantly. To his embarrassment. Because it’s what I would do. Make sure Hala keeps her strength but allows herself to break down. She doesn’t have to be so strong. She knows who she is, like I did at that age, and she’s sure of herself. Remind her. They are the loves of my life and I will haunt them forever to be there. I refuse to miss a thing.
Make my Mom travel and my Dad be the Gramps he needs to be. Make Ronnie change diapers and not wiggle out of it. And when he gets to that Dad point scratching his head, tell him I told him so.
Wrap my friends in words. The ones I was close to. The ones I wanted to be close to. The ones I spent more time with in digital form. The old friends I still think about and love and the new friends I’ve welcomed into the fold. Be bold in your words and in your life. Don’t be afraid to debate that Republican and stand up for those who need it more than you.
To those I pissed off with my words I don’t take a single one back, and you love me for it. To those I inspired with my words know that was an accident but I’ll take it.
I’m so tired of being sick. I’m so tired of living this half life where people take care of me and I try and fail to take care of a household. I hope what is there is memories of love and snuggles and fierce independence.
I’m sure this will pass and I’ll float on to the next half life in this illness. Fighting. God, I’m always fighting. I’m so tired.
Fight for me and mine now. Get Erin angry and move a mountain. I’ve moved plenty. Now it’s your turn.