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.
Healing Benefits of a Support System
Dan, my parents and siblings, and I fell into a nice routine during the weekdays at MFB. Well, it was nice for me. I think it was probably exhausting for them. I can definitely speak to the power of a supportive family. Many of my therapists told me that the amount of support a patient gets is a big factor in how much they recover. I had amazing support. Someone, whether it was Dan, my mom, my dad, Elyse, Zach, or even Betsey who came to visit one day, was always with me in every therapy session. God is so good to have surrounded me with such an amazing support group.
Back to the routine.
A Normal Morning at Mary Free Bed
Dan would wake me up around 7am to start getting ready for the day. My first session was at 9 or 9:30, and I needed to shower, eat breakfast, take my morning meds, and have a visit from the doctor before going to my first session. That is a lot of activities to fit into two hours when you move at half speed and can’t do too much yourself.
First things first, shower and get dressed. Showering was not easy. Dan would wheel me into the shower in my nice wheelchair then help me up and into the shower wheelchair. The shower wheel chair was made of plastic and had extra grippy wheels to stay put on the slick tile.
My left arm/hand was not moving for quite some time so I couldn’t wash completely by myself, and I had a hard time washing my hair. It was a team effort by Dan and I to get myself showered.
He was extremely patient with me, reminding me how I used to hold a wash cloth or show me how my right hand was scrubbing my head then help me practice with my left hand. It was a painfully slow process just to shower.
I was in quite a bit of danger of slipping and falling while in the bathroom too. I did not feel steady enough to even stand on the wet tile by myself for a long time. Dan had to be very careful getting me through the showering process. I was so glad he was there though instead of a nurse.
Once out of the shower, he would help me get dressed. The help was minimal though as MFB’s main goal is independence. They want every patient dressing, feeding, and cleaning themselves as soon as possible. An occupational therapist came in one morning to give me some pointers on how to get dressed with what they called an “affected side.”
Dan and I still joke when I’m missing the arm in my coat or when I can’t get my hand through a sleeve, “Affected side first!” This was repeated over and over for nearly every activity.
Putting on pants? Affected leg first.
Putting on a shirt? Affected arm first.
Walking up stairs? Affected side first. (not true for walking down stairs though!)
Next: eat breakfast! By this time, my breakfast tray was usually delivered with my morning medication. Dan would help me get the food ready to eat. I fell in love with cream of wheat during this hospital stay so he would open the honey packet and help me squeeze it in the bowl. Sometimes he would prepare it for me all together if I was running late.
One key thing with getting functioning back on my left side was to try to use my arm/hand as normally as possible. When I washed my hands after using the restroom, I would put my dead-fish-of-a-hand into the sink and wash it. When I ate, I would try to double-fist anything I was eating my milk carton, my glass, any finger food should try to be eaten with two hands.
While I worked on eating breakfast, Dan would shower and get ready for the day. This was the best part of having a private room Dan could use my bathroom just like if we were staying in a hotel. It was so convenient!
A New Goal
The doctor would stop by in the morning to test my strength and see how therapy was progressing. From day one, I was begging to get off the heparin shots. He told me when I was walking 50 feet a day, I could stop.
I had a new goal…walking 50 feet!
Next: My AVM Story – Part 36