Below is another part of My AVM Story: the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.
Second Day at Mary Free Bed
My first full night of sleep without the constant interruption of nurses checking my vitals was not everything I thought it would be.
Do you know what happens to your bladder muscles after have a catheter in for four weeks straight?
They don’t work like they used to.
TMI? You might want to skip this post. 🙂
10: 30 – I was wakened to nature calling about an hour and a half after going to bed. I woke Dan up. He jumped out of bed, helped me into my sling (which was supposed to be on at all times if I wasn’t lying down), helped me up and into the wheelchair, and wheeled me quickly into the bathroom. He got me to the toilet in the nick of time.
12:00 – I have to go again. Dan is up in a flash, sling, wheelchair, screeching into the bathroom, relief…
1:30 – Again.
2:30 – Again.
3:30 – Again.
Dan is BEAT by this time, and I am too. Our bodies don’t want to get up again, but I would have wet the bed if we didn’t. It was that urgent EVERY time.
At this point, we might as well stay up. My therapy doesn’t start until 9, but we assume it will take me a while to get ready. Does it ever! Even getting such an early start, I barely make it to my 9am session on time. All I did that morning was shower, get dressed and eat breakfast. No fixing my hair and no make-up. I didn’t even have clothes to chose from, so no time was wasted there. It just plain took a long time to figure out how to shower, how to put clothes on, and how to get food into my mouth. I was pretty much ready for a nap, and I hadn’t even started therapy for the day.
First Day of Inpatient Therapy
One of my first sessions was occupational therapy. She asked me how I was coping so far. I immediately told her about our rough night and how tired I was because I had to get up so many times. She kindly explained that my bladder muscles were weakened from lack of use. It could take up to two weeks to regain full bladder control.
Dan and I were instantly deflated. Two weeks?
I don’t think we could take two more nights of being up ever hour in a half to two hours.
She tried to encourage use with exercises to try then sent us on our way to the next therapy.
Next session: physical therapy. This turned out to be my favorite kind of therapy. This is where I learned to walk/run/work out again!
My therapist was a sweet older lady who actually runs part of the MFB program. She started me out with standing between the parallel bars and trying to walk/shimmy my way between them.
She made a joke about my nursing scrubs that I was wearing.
“Those look really baggy. Are they going to stay up when you stand up?”
I kind of laugh and say they should.
They fell right down as soon as I stood up. Oops!
Thank goodness I had already lost all sense of modesty back in the hospital. We all had a good chuckle while Dan and the therapist tried to tie my men’s x-large scubs onto my slightly-underweight women’s small/x-small body. 🙂 Good times.
My last therapy of the day was speech therapy. The therapist was just trying to get a baseline for what I could and couldn’t do.
One of the first things she had me do was stick out my tongue.
Stick out my tongue?
I thought about it for a minute.
Hm, I don’t know how.
Without a mirror in front of me yet, I don’t know what I did. However, I know my brain had NO idea how to stick out my tongue, so I’m guessing whatever I did looked pretty funny.
She had me do a few things then she brought out a mirror for me to try again when I could see myself.
Wow. I did not know what I looked like. There was no mirror in the hotel room, that I was able to see into. My physical appearance was poor. Truthfully, I was a train wreck. I knew my hair would be dried funny, no make-up would show the bags under my eyes, and the lack of sleep would be working its magic, but I had not anticipated the slouch on the left side of my face.
It had never occurred to me that my entire left side of my body was affected. While I knew my leg and arm weren’t right, I didn’t know the left side of my face didn’t move right either.
All of the sudden it made sense why I couldn’t drink the liquid medication at the hospital correctly. I kept trying to toss it all back in my mouth, and it kept dripping down my chin. Why did that happen? I was so confused. Dan kept trying to get me to sip it, and I couldn’t understand why.
It’s only an ounce. Let me just toss it back and swallow it.
It never worked, and I always laughed it off. How silly that I couldn’t swallow this little bit of liquid. It never dawned on me why I couldn’t keep it in my mouth.
The speech therapist ended the session by giving me some exercises that would strengthen the muscles in the left side of my face. I was to do them three times a day, maybe more, I’m not sure anymore. What I do know is that I was committed to doing them as often as they prescribed. I was going to get better!
Mary Free Bed was shaping up to be a much better place than I had thought the day before. I was exhausted but optimistic after my first day of therapy.
Next: My AVM Story – Part 33