It’s been more than a week and I have managed to stay out of the hospital! I had a pic line in my left arm for two weeks that dispensed a liquid antibiotic to kill off the infection. This was removed last Friday.
I’m close to being back at full strength. Being in the hospital so frequently saps the life out of me. Just lying in bed watching videos and sports on TV. I didn’t get the opportunity to sit up in my wheelchair during that time. Even sitting upright got tiring the first few days post discharge. We slowly built up my endurance in therapy and now I’m back to my previous routine in PT.
The first couple of weeks after the ostomy surgery was heavenly. My tone was the lowest it had ever been for a sustained period of time. Me and my therapists were excited about trying exercises previously not considered because of the tight muscle tone.
That changed overnight. The tone returned in full force and suddenly I became very stiff again. OT has been stretching my upper extremities diligently to keep my elbows and fingers from contracting.
Each morning, my arms and legs are extremely stiff. Residential staff have to wrestle to bend my knees and rest my feet on the wheelchair foot plates. I am unable to straighten both arms to reach the wheelchair steering controls until OT gives me a good stretch.
My right arm is next to useless. The wrist is bowed and fingers are bawled up in a fist when they’re not in a brace. My left arm is the functional one. But I’m fighting against the tone in trying to straighten it out.
I’m way overdue for Botox injections. The next appointment with Dr. Yablon isn’t until May though we’re trying to get in earlier. It’s discouraging to regress so drastically. I’m pretty concerned about the inability to straighten my arms or most of my fingers. Living with this tone is debilitating, uncomfortable and painful. We have been trying for over three years to find some relief but it hasn’t happened yet. End it may never happen, which is extremely depressing.
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