Well, I woke today to the sound of slick wheels on the pavement. It was raining. This hurts. I realized that before I even opened my eyes. I laid in bed for a while, not moving and listening to an audio prayer on Hallow.
I am really slowing down now and waking up takes me a while! The weather doesn’t help either, 25 years into this disease.
Seriously?!
I really can’t believe that it has been a quarter century that I have had this horrible disease. I am just coming off of a really brutal 2025 and I’m still trying to process it.
I’m homebound now. I have known that since December 2023. I started using a power chair in July 2018. I have told my Mom and she doesn’t agree but it’s true. I just exist between doctors appointments.
I am a little bit nervous because I just scheduled a January appointment with a podiatrist. I really hope that doesn’t lead to more appointments because that’s what happened in 25. I kept having to add new doctor appointments and my head swam at the same time that my credit card was getting a workout!
I don’t know what 2026 is going to bring in terms of doctor appointments. All I know is that my disease is progressing and it’s a bit scary!