There’s no one word to describe the trip. I’ll try to list a few: successful, physically painful all the way up to excruciating. I was joyful, energized. The trip was sobering with quite a few insightful moments. I laughed a lot. No tears at all.

Driving down and back was easier than expected. I had plenty of room in the car.

Despite twice swearing to it, the hotel wasn’t handicapped accessible which put more strain on me than necessary. Every angle to get in bed was too narrow for the chair which meant I had to park at the end of the queen size bed then walk the rest of the way. Most of the time I ended up walking from the bed to the restroom bc it took less time. I wasn’t willing to get any urine in my chair at all.

During the day I wasn’t by the bed so I could use the wheelchair, it’s just that at night there was more walking than there needed to be.

Day one my pain was high enough I decided to skip Delta-8 edibles and do nothing but opioids. On the way back home I took an edible and skipped opioids…… Lets back up to when my pain rose and stuff got real.

We went down Thursday but it wasn’t until Saturday that I was able to leave the hotel. We all went to el Toro and had a blast! But by the evening my pain was so high I was vomiting, violently. I thought for sure I’d wake my roommate but I think when she sleeps it’s more like a coma than anything else. Somehow I didn’t wake her. I coughed and hacked. Cleaned up what I could and went back to bed.

The plan was always for me to attend the Sunday session in person, so I did. I wasn’t in a terrible amount of pain but I was exhausted and my breathing was shallow. I even had a photo taken with a friend. That photo is an eye opener.

I’d said on many occasions that I don’t look sick. All the things listed that are wrong with me and I still don’t look sick. Scratch that statement bc all that walking, the rain, no humidifier and all my health issues were captured in a photo with a friend. I’ll list the days in order.

Friday at the Practice Patience convention in Dayton, OH. Friday I stayed in the hotel. I was too tired to go to the session in person or to go eat after. I got dressed all 3 days bc all 3 days were special. I was able to participate in some things but not everything.

Saturday. I didn’t go to the convention but I did go out to el Toro and had an awesome time!

Sunday after a night of pain, vomiting and coughing I got myself together and went to the final day of the Practice Patience convention.

I wrapped my body in a sunshine yellow kaftan and kept it moving. I was in quite a bit of pain sitting at the convention. I took care of myself though, and thanked my friend for not rushing to rescue me every time I struggled with something.

I prefer not to be rescued. If I’m in a spot where I need assistance I’ll ask but to jump up and rescue me is never going to be ok.

I am grateful that my CNA came Monday as planned. I’m not sure how I’d make it without one. I had my therapy session Monday as well.

During the out of town visit my head was just as loud and fragmented as always. My body did whatever it wanted to do, and my physical needs weren’t met at the hotel. I still don’t regret going a single bit.

I have an invitation to room with her next year but there would have to be some changes in accessibility. We were both kind of shocked by the quality. I’m certain we won’t return.

People forget that wheelchair users need space to roll up to the bed, and room to get in and out of the restroom. There wasn’t any space for a wheelchair user. Period. This is a set up for people who are safely mobile. I’m not in that group.

As I said, I really enjoyed myself despite pain and all. There was only one thing unforgivable, for which I have no patience! Look at this craziness! Lipton tea! WHAT IN TARNATION? LOL LOL

I had to walk around the room AND you served me Lipton. You’re asking a lot from me. LOL #teasnob

Of course I’d never leave my tea needs to anyone so I brought my own. Earl Gray from the UK, mixed with lavender flowers all hand wrapped in reusable, compost friendly bags. I can’t believe they actually tried to give me Lipton tea. I still tipped but come on now. Not Lipton! My friend drove 20 min away for Starbucks.

Two days ago I was certain I’d never go to another convention due to exhaustion and pain. But I’ve slept since that feeling. At least l can plan better. I’ll get my own little luggage situation, too. I’m hoping for second hand pieces. πŸ™‚

I brought art supplies to help focus anxiety. Dr D asked if I switched. I did, several times. My little one Ariel was afraid and whimpered a bit. My roommate slept through most of the time when I had emotional difficulties. I was embarrassed but she’s a safe person.

I hope I get to go next year.


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