Warning- this is long and relatively uninteresting.


I promised an update on the continuing problem of my toe. I went to the wound care facility for the first time yesterday. It was not impressive, depressed part of the city, feeling of being under permanent renovation, waiting room smelling strongly of staff lunches. I was more nervous than I can remember, my blood pressure was up 22 points each over the previous day's reading at my PCP.
We waited a very long time for the doctor, 40 minutes after he had popped in and said he would be right back. My husband had to track him down as I had my braces back on and was ready to run, fight or flight in full control.

I have a phobia of doctors, started in childhood, and aggravated by the fear that a new one will object to my pain medication. So far everyone sees severe SFN and figures the medication is necessary and appropriate. Not today. "why are you taking morphine?"

The sarcastic answers to that one all rushed to the front at once. I managed to say something about the pain from the neuropathy. He kept asking me what kind of neuropathy it was. I tried, my husband tried, nothing we said seemed to be what he was looking for but he gave no clues-
Small and large fiber peripheral neuropathy?
Length dependent?
CMT type 2?
Hereditary neuropathy?
We described the skin biopsy results, the EMG results, the visits to Johns Hopkins, nothing was sinking in.
He left the room and we turned to the nurse, apologetically but firmly, saying that we really did not see the point in continuing the process with a doctor who was both prejudiced against me because of the morphine and completely ignorant of CMT.
She was very kind, said she noticed his reaction to the mention of morphine and that it was unacceptable. She also told us that he was a general surgeon, not the podiatrist we had been told we were meeting, and that we would see the chief of podiatric surgery at the next meeting. I still wanted out but she had talked me off the ledge in more ways than one.
When the doctor returned she must have communicated something to him, I did notice that she rapidly wrote something on paper and showed it to him when he walked in. He was much nicer. Much,much nicer. We do have very good insurance after all but that is no excuse.

He said the callus was terrible and that I shouldn't be going for walks at all. The wound was small and clean. My ankle seems to be improving slowly. Rather than the hyperbaric therapy they are going to put artificial skin over the holes and cast my foot. Each week they will remove the cast and re-do the procedure. It should heal in 4-6 weeks, but he does not think I will ever be able to walk very far without the callus building up.

My husband has been saying all along that they should just caulk the thing and that does sound like the plan. I have no confidence in this facility but it does sound like a plan and I need a plan since my podiatrist is leaving the practice in November, being the second one to do so since this started.

I have a great deal of shame about being on the pain medication, rather I carry a great deal of shame from childhood and this is one of many triggers, and I am always afraid of being treated like a drug fiend by new doctors. It rarely happens but I worry nonetheless and it happened yesterday. I was really upset. My husband was scared by how upset I was and kept telling me to take a Valium. He said he can't remember seeing me that nervous. I still have an eye twitch today and am a little shaky.