Yesterday I saw the PT for the first time in more than a week. She confirmed for me that my hand and arm were no worse - but not especially better - after bandaging 20+ hours a day for five days in a row. So she gave me permission to not do this. What a concept! As she said, if it's not helping, and it's making you suffer, why do it?
I am back to wearing the sleeve and glove during the day and bandaging at night. This morning my hand feels a bit swollen but my arm seems improved. The PT will check my wrappings to see if I need to purchase new ones in case the stretch has given out. Sadly, these bandages are not "durable medical equipment" because they wear out after several weeks/months of use. If they were considered DME, my health insurance would cover the expense. As it is, I have to pay up front every time I need new supplies. Thankfully the undersleeves and finger bandages have a much longer life span and are washable.
J, the PT, rearranged her schedule to find me some additional appointments so I will now see her at least twice a week for a few weeks. I really think it was going for a week without treatment that put me over the edge. But she is the only PT with manual lymphatic drainage skills at this practice, I like her, and her schedule fills up quickly.
This is why it takes me so many weeks, even months, to wrestle down a flare up. First I have to identify the problem. Then I try to address it on my own, hoping it will resolve simply. That takes a week. Then by the time I realize that I need PT, I have to get an appointment AND try to get adequate follow up (i.e., twice or more a week for several weeks). That can prove impossible, as we saw last week when J had nothing available.
I will see her again, get her opinion on buying new supplies, and go back again next week.