Thursday, January 20, 2011
Continuity of Care
Monday, January 17, 2011 09:04:24 PM
We made it to church yesterday. I kept falling asleep; at one point Adrienne woke me up because I began to snore...
I haven't been writing much lately, not because I haven't anything to say, but because I have been too busy sleeping my life away. No matter how much sleep I get, it isn't enough. After church, I ate lunch then took a five hour nap. Then came dinner and off to bed I went.
I don't know what makes a good or bad physical or occupational therapist, but I always felt I had competent, if not excellent ones and I was fortunate to have them. And there have been plenty. I had both kinds of therapists at University Hospital, a plethora of therapists at the Drake Center, and then throughout the summer, a succession of physical and occupational therapists came to my house. I have had fifteen different therapists.
Being ill has been one big transition with countless smaller ones following. I remember wanting to cry with humiliation and indignation when I was told I could not receive my IVIg in Same Day Surgery. I hated not knowing where or when I would be admitted for my treatment-sometimes I stayed in the lobby for over an hour waiting for a bed to be available. There was no continuity there.
There was so much going wrong with my life at that time that I scarcely noticed staffing changes with the therapists.
Once I started to recover, my life became more consistent; I was able to return to Same Day and also start out patient physical therapy.
My latest and biggest disruption was with the temporary physical therapist who replaced my regular therapist left for maternity leave. I have come a long way since we started last fall.From using a wheelchair to walking about with my cane. I have enjoyed working with her and I know that I am going to miss her unlike any of the other professionals, and that bothers me.
Despite my feelings about working with her, it stings to be reminded that I am a patient, a client, not a peer to my therapists. This may be their job, but it is my life. Without my CIDP and the resulting disability, we never would have met.
I miss driving. I miss standing for more than a few moments without needing support. Despite my gains, there is so much I have lost and one of those things is the freedom to meet new people and get to know them without the fear that they will suddenly be removed from my life and I feel like I will always be on the losing side of that equation.
I feel guilty admitting this, but sometimes I get tired of being grateful.
I had to clear my throat before saying good bye on Monday. I wanted to say more than “Thanks, take care and good luck!” but words failed me; by the look on her face, she might have been experiencing the same. It is not any easier now than it was on then.
Please feel free to leave your comments below.
Thursday, January 20, 2011 11:18:22 AM