I try not to write in moments like these, but, that is part of this process of sharing.
Today, I had physical therapy again. It was raining, but only lightly. I had not been out of the house in over a week, when I had tried to do more than I can, a terrible sore broke out on my right toe. I was unable to put my right shoe on, so I had to go out with a sock. I did that once, and stayed home the rest of the time.
After waiting another 3 months for physical therapy, finally I was seen in January 2011. The last time I was referred to PT was in January 2009, when the PT sent a note to the neurologist to diagnosis my right leg before he could do anything.
Last week, during physical therapy, I was told no work was being done on my arm because my doctor had not ordered an evaluation for my arm. The supervising PT came in that day, and we all agreed they’d go back to the original referral to see if it called for my arm to be evaluated. They also said they’d consult with my doctor, and, together, all four of us, we’d make a treatment plan. I was given 45-minute appointments. As disturbed as I was that – 1) we had done an evaluation on my arm and I was being told we did not, and 2) the PT had suddenly said my arm was not part of the evaluation because the referral didn’t require it – when the supervising PT got involved, and created the game plan, it seemed reasonable, and I felt we were making progress.
I have been waiting for the written diagnosis from my doctor, and a report about the PT findings from my doctor. Nothing still.
What did arrive in the mail from my doctor is a lab form to test my protein levels. What?
I have not seen my doctor since December when I was told the hospital was ‘off limits’ to me. Now, suddenly, out of the blue, I receive a lab form to test my protein. No explanation, no report about the PT evaluation, no written diagnosis.
When I arrived at PT today, the receptionist called the PT in and informed us both that I had only been given a half hour appointment. Unfortunately, the PT’s next appointment was already waiting. I said I did not understand since we had made a 45-minute appointment. The PT said a mistake had been made. I was invited to come in for the remainder of the appointment.
The PT said as we sat down that she did remember now we had evaluated my arm. Of course we had, I was there on the first appointment when she had had me lift up and move my right arm and leg.
I asked the PT’ what the diagnosis is based on the nerve damage and muscle weakness that should found in the evaluation. I was told I have a ‘sensitive nervous system.’
Oh, what is that? And, is it treated with mirror therapy like the kind I have been given the last three appointments, on my left leg?
I showed the PT’s the shaking in my right arm and hand, but, like the swelling on my ankle, they don’t want to see that.
At the end, the PT told me even though I had been barred from Neurology and Pain Management, I could go see a neurologist at another hospital. Yes, as soon as I have different insurance, but should the Managed Plan be able to collect Medical money for over two years without providing proper treatment protocol then point to lack of treatment as evidence of no damage?
I pointed out the swelling in my right ankle and foot, the same type of swelling that has been persistent since last July when I become almost entirely unable to walk on the right foot. I told the PT about my toe, and how glad I was to be able to put my boot on again.
I began to take my boot off to show my ankle to the PT and the Supervising PT, but the PT’s didn’t want to see it. I asked if this type of swelling could be caused by nerve damage. No, they said, they didn’t know why that was happening. I asked well, how do we find out? Again they mentioned my doctor. I asked if she had been consulted as they had said. The supervising PT said my doctor really needed to get involved. Again, they admitted its possible I have nerve damage and no CPRS. Of course, neither of them can refer me for testing of my nerve, only my doctor can do that, just like only she can refer me to a neurologist.
We ended the PT appointment with another ‘game plan’ – the same plan that they have said each time I go in, but it never happens, just like today, I realize I’ve been a fool, its never going to be different.
As I was leaving I was told my appointments had been changed back down to 30 minutes and the PT I was working had her last session next week before graduating. Another student, another temporary person on this very complex case of mine that has this top rate hospital unsure what is wrong, but hopefully a student can figure it out?
You mean on top of being injured there, having treatment delayed, my big prize is that the hospital can drag out treatment and deny appropriate medical care?
I wonder how it is that doctors are able to act like this, and why it started from the moment I was hurt at that hospital. I have never had problems with my doctors prior to this experience, I never would have questioned a doctor, I just couldn’t believe this has happened.
I feel so stupid, that oath has no meaning anymore.
I make sure my child doesn’t hear me, I let the tears drop silently.
I know that tomorrow, as today’s appointment, and the sense of hopelessness fades, the positive rest of my life will cover the tracks.
Given the little accomplished in PT anyway, I can return to believing I don’t need a doctor.
Hopefully, I don’t have a serious progressive neurological disorder that has gone untreated for two years, hopefully, being denied treatment will spur on my inner doctor and I can bring on my own healing, hopefully, I can make my leg get up and walk, and stop my hand from shaking. Its all have left, hope.
The healer working with me said the same thing that the CPRS specialist said – ‘get to a neurologist.’ Yeah, if only I could.