1:30 am. PISSED OFF
I realized that my ostomy bag was leaking. I S-L-O-W-L-Y made my way to the bathroom, and discover that my seal wasn't working, and hadn't been working for a while. It caused a major skin irritation. I removed my bag, my seal, took a shower, put all my stuff back on, and went back to bed at 2:46 am.
6:52 am. PISSED OFF AND CRYING
I realized that my ostomy bag was leaking again. I made my way to the bathroom, and discovered that my seal was once again not working. I removed my bag, my seal, cleaned myself up, took extra time to reapply my stuff, and went back to bed at 7:37 am.
At this point I really should have gotten up as I was scheduled to leave for my first ALS support group in a few hours. I became so anxious about my bag leaking, that I decided to take care of myself in a different way and just go back to sleep. The support group would have to support me another time.
11:14 am FEELING HOPEFUL
Woke up. Yes, I was exhausted! Realized the seal was holding and feeling happy. Made a call to see if the ostomy nurse was taking calls this weekend. Nope. Would have to wait until Monday. Ok. Got up and dressed and decided I should take advantage of the beautiful day and go for a "walk".
12:10 pm FEELING EXCITED
Got downstairs. Ate a bowl of cereal. Informed Gillian that she is now part of my plan. We were going to go for a "walk". Adam would take Sonky on the leash. Gillian would push me in the wheelchair, and I would hold Jackson on the leash. Ean wanted no part of this adventure. The dogs and I were really excited and we were on our way. We started down the sidewalk through the carpet of beautiful yellow and orange leaves and...
12:52 pm LAUGHING HYSTERICALLY
Gillian was unable to see the uneven sidewalk due to the leaves, and as she pushed the wheelchair forward over that spot, my body jerked forward right onto the sidewalk into the leaves. I landed on my side and immediately began to laugh. And laugh. And laugh. I'm even laughing now as I recall the incident. The dogs began to crowd around me and kiss my face. And I laughed some more. Somehow Gillian got a hold of both dogs, and Adam started the attempt of getting me up. But I was laughing so hard that I was not helpful at all. Adam's laughing, Gillian's laughing, I'm laughing and all the dogs want to do is get moving.
12:57 pm STILL LAUGHING
Adam somehow manages to get me back into the wheelchair. He takes both dogs from Gillian and we decide Gillian wheeling me in the road would be a better choice for everyone involved. As we finally move forward, with me still laughing, we take in the beautiful weather, the gorgeous leaves, the excitement of our dogs, the familiarity of our neighborhood. Gillian begins to sing a very silly song and we laugh and love and enjoy our walk.
1:41 pm FEELING THANKFUL
We make it home and I eat a little snack - left over spinach dip and crackers that my friend Marissa had brought over the night before. Still delicious. It makes me reflect on the friends that came over last night and their generosity of time, gifts, and love for our family. It brings tears to my eyes as I try to come up with the words that will reflect how appreciative I am for their friendship. Adam and I come up with a plan to get into Cheryl and Tom's house for their pie celebration later that afternoon.
3:00 pm FEELING ACCOMPLISHED
We drive over to Cheryl and Tom's house, and park in their driveway. I used to hesitate to park in people's driveways, feeling like I was being presumptive to take that space. Now it has become more of a necessity as it gets me closer to my destination. Cheryl comes out to greet us and Adam and I execute our plan to have me use the walker to get into the house. Gillian, who got their a bit before us, instinctively comes out to help me. Tom and his friend come out to offer their assistance but quickly realize that their presence equals "too many cooks", and quickly retreat back to their pie making, and to take some of the attention away from me. I so appreciate that. I successfully make it into the house, into a chair, and am able to hug some of my favorite people. I eat pie and drink apple cider and have conversation with new and old friends. It feels normal and comforting.
4:10 pm FEELING EXHAUSTED
After sitting for a long time my core muscles began to get very tired. I signal to Adam it is time to go home. I am a little disappointed in my endurance, as well as the fact that Danielle and Frank had just gotten there and I wouldn't be able to visit with them longer. I say my goodbyes, tear up a little as I hug Michele, and start making my way out of the house. As we are leaving, Lisa and Tom are walking up. I haven't seen Lisa in a very long time and was just a touch surprised that she knew of my diagnosis. They patiently waited as I made my way down the steps and Lisa gave me a hug. She looked lovely and happy and we did a little bit of catching up. I got into the car and Cheryl and I hugged one last time which resulted in me weeping.
4:30 pm FEELING REFLECTIVE
Adam got me to the couch. I really needed a nap and to stretch out my body. I lay there for a while thinking about the last 24 hours and all that I had done and gone through in just a short time. I breathed in deeply in order to calm my body and start some meditation. I still held the scent of Lisa, the perfume that she wears, and that was reassuring to me. I meditated and fell asleep.
6:07 pm FEELING REFRESHED
I woke up to the sounds of Gillian leaving to go to dinner with a friend, Ean asking me if he can have spaghettios for dinner, and Adam preparing some food for anyone who wants it. Jackson was still sleeping above me on the top of the couch. Watching over me. It was very dark. I checked my phone messages and smiled because even before I opened my phone I knew one of the messages would be from my Mom. I made sure my ostomy seal was still intact (yes!), and I began to hear the wind kick up outside. I remembered that Adam Joseph said it was going to be cold and nasty and I was grateful that I got outside today a bit to enjoy the beautiful weather.
6:27 pm FEELING FRUSTRATED
Every once in a while I still forget. I forget that I can't get up from the chair myself, or I need help to put on my jacket. So I go to get up and I immediately plop back down. I begin to cry. And then I remember how I dropped the hummus lid in my kitchen last night, and one of my mother in law's lead crystal wine glasses (it shattered), and how my lady village helped me to clean it up. They came to my rescue without question or discussion and that made me cry some more. I guess because I love them and I am so appreciative of the help, but I am frustrated that I can't do all these things myself.
6:38 pm FEELING LOVED
I call to Adam to help me get up. He comes to get me and I notice he and Ean are watched Newsroom together and having discussions about the show. Then they turn on college football and they talk about plays and players and stats the way Adam and his father used to. It makes me happy and feels familiar. Soon Gillian will come home, and on Tuesday Sarah will be back for a few days. I live for these moments and will do my best to bask in the love.