I have been struggling with this post and how to go about it. I had so many weeks of positive outlook and progress, it may shock you to hear about the last few weeks. The point of this blog is to document my whole journey though, so bumps along the road must be included.
Ten days ago I was informed that I am being discharged from rehab because I am "not progressing enough", which really means - I still can't complete a sit-stand so my muscles aren't coming back fast enough. I was floored by this decision - truly stunned. I am as aware as anyone that not all of my leg muscles are working. But I am pretty sure that I am making progress and that the best way to encourage muscles is to do just that - encourage them (by trying to use them)! It quickly became apparent that this decision was not made by the therapists who treat me every day but by the physiatrist who oversees the facility. He has not examined me since I have been here and the extent of his involvement in my care was to watch me walk for 30 seconds one afternoon. Based on this he determined that I have reached my maximum benefit of rehab for now and should go home and hope that things come back in a couple months... Seriously. WTF. (Can you tell I'm still really angry?). There was no consultation with my neurologist at all (someone who is much more familiar with my case and my disease). When asked about this we were told that he did not need to consult anyone else. Great. Scott and I had an unsatisfying meeting with him about this and came away even more upset. I tried to extend the date or have a reassessment to no avail. I did manage to get outpatient physiotherapy arranged for 3 times a week.
So here we are on the eve of my discharge and I am still very angry and upset about the situation. It simply makes no sense. I am young and have a chronic neurological disorder. Physiotherapy is essential to my recovery. I am making progress (if slow) and am working as hard as possible to get the most out of my therapy. It is certainly better in the long run for me to get the rehab I need now and hopefully get to a point where I don't need to be such a drain on the health care system. Everyone I talk to in here is shocked by the situation and seems to agree with my viewpoint but there is no swaying the one person who makes the decision. So much for collaborative health care!
In an attempt to reverse this decision we made an appointment with the neurologist to get an updated EMG and nerve conductivity test and to see what he had to say about things. He agreed that rehab is what I should be getting and is going to see about getting me assessed for the Halifax facility. He also said that the 3 day/week outpatient therapy that I will be getting is better than nothing. The tests were positive. I am showing signs of nerve regrowth in my upper legs. It is not as much as could be hoped for, but is a start. There is also no indication that the CIDP has progressed, which is great. As usual, we had a good appointment and were met with a reasonable and rational professional. Unfortunately he is not able to change anything here.
I have run the gambit of emotions with this whole thing. I have tried to think positively and find the silver lining. I have tried to rationalize it and see the other side of the argument. These are my normal approaches to things as I am really bad at staying angry. However, I just can't do so in this case. It is a bad decision no matter how I look at it. It just really sucks. I was getting good therapy here and felt I was doing well. I am now jaded toward the whole facility and am more stressed out than I have been in months. I am, of course, looking forward to having more time at home with Scott and Barney.
We'll see what happens with Halifax rehab. In the meantime I will focus on my home exercises and make the most of the 3 physio sessions I get each week. I will also try to get back into some more normal routines. I will do my best not to let this bump in my recovery throw me off course. I will also think seriously about writing some letters of concern and complaint about this as I just can't "go gentle into that good night".
