25

Wow. Seven comments within a day of the last post. Thanks for all the kind words.

I'd like to think that recovery will take a few weeks, but the reality is that it will take much longer and I will probably still be doing physio even after I get released from GF Strong. Things are still on an upswing, which is definitely a good thing.

I've been thinking of painting my apartment, since it's been empty now for nearly six weeks and will be for the near future. Everything is white, and there are lots of corners, so I can have fun with different shades of colours on the different walls and have it painted while I'm gone. I've got a pile of colour samples, mostly earthtones ranging from yellows to browns along with a few greens and greys. I think the kitchen would look good with a brick red colour on the wall with the Bua print and a grey theme in the bathroom. I need to consult someone with actual interior design skills first before I buy any paint.

24

All of the TPS Reports have been completed and I'll be on my way to GF Strong as soon as a bed opens up there. The schedule at GF Strong will be an hour each of physio in the morning, afternoon, and late afternoon/evening. Any treatments I might require will be done at VGH, since it's closer. The dialysis centre is right across the hallway from Amy's lab, so I can drop in on her if any further plex treatments are necessary.

GF Strong is located at 4255 Laurel St, just off Oak St and W 26th Ave. The #17 Oak will take you there from downtown. The easiest way to catch it is to get off the Skytrain at Granville St and walk one block down to Pender St, where you can get on between Seymour St and Richards St.

It looks like they have stricter rules about leaving the facility than St. Paul's, where I've been able to come and go as I please, as long as someone is there to help me and I have no tests or treatments scheduled. Return times for evening outings must be before 9:30pm Sun-Thu and 11:15pm Fri/Sat, although it says that special cases may be made. That's all I need to know. :) There is no word if I can get Internet access there.

I've been doing some work with the physiotherapists almost every day. Yesterday and today, we went to the physio gym for about half an hour and did some exercises. I was able to use the exercise bike, and even though it was at its easiest setting, they were surprised that I was able to do it. My biggest strength gain has been in my arms being able to sit down. As long as there are bars on both sides of the seat, my arms are strong enough to hold my weight while I sit down. That's something I couldn't do a few weeks ago.

23

I finally posted the photos from Amy and Sarah's birthday. Now that I have day passes at the hospital, I can go home and have Internet access. It is very convenient that the hospital is three blocks from my home.

A doctor came by yesterday and was surprised that I was still there. He thought I had been transferred to GF Strong already. It sounds like I'm going there this week, but no one can tell me when.

22

I've been without Internet access since I moved rooms, but I'm back at home for a few hours tonight on a day pass to take care of some errands before I head back to the hospital. I'm in a semi-private room, and the ward has had a lot of empty beds for the last week, so I've been fortunate to have the room to myself for the week except for one night on Tuesday.

St. Paul's is the inner city hospital that serves the downtown eastside, and the street people use it as a clinic to get fixed up and to get their antibiotics when they go too far with their addictions. However, this week being welfare Wednesday and also really nice weather, they've all left the hospital to do whatever they do on the street. They really know how to use the social system and how long to stay in the hospital to maximize disability payouts (on top of EI payments). I have stories to tell and will write about them as I get time online.

Many of the street people who came into my room were suffering withdrawal from the drugs or alcohol they were on and were completely delusional. They would turn over on their beds, bending the IV line and causing the alarm on the IV pump to go off. The alarm is loud and they just slept right through it. At times it would go on for half an hour before a nurse came by and fixed the problem. It is so nice being in a room with no interruptions and that is completely dark.

I finished my last plex treatment today. The hemocatheter used to hook me up to the machine was also taken out. I will sleep much better tonight without it dangling from below my shoulder. I fell down two nights ago and thought I had sprained my left ankle. The physiotherapist looked at it the next morning and said it was just a stretched muscle. The pain is still there a bit when I move my ankle in a certain way, but is mostly gone. It was my third fall in the hospital (the first was the day I had the biopsy done on my thigh and the second was getting out of bed).

I'm feeling better and noticing some small improvements. A few weeks ago, I was having trouble raising my arm to wash my shoulder, and now I am able to do that. It's nothing big, but it is promising. Recovery is still not going to be easy and it will take a lot of time. Now we wait and see if I start showing some strength gain or if I go back to losing strength.

The doctors are talking about doing another biopsy. This time it will be both a nerve and muscle biopsy. They want to rule out vasculitis, which is supposed to share some of the symptoms that I have. I really don't want to go through another biopsy, and removing part of a nerve means I lose my sense of sensation wherever they take it from for the rest of my life.

21

A quick update, Dan has been moved from room 25 to 23. New phone extension is 67723.

20

The diagnosis is acute motor axonal neuropathy (AMAN). It's curable but will take a very long time. At least months. It is part of the Guillain Barre Syndrome family and is an autoimmune condition.

It is most common in China in children but has been known to happen in North America.

The autoimmune attack is on the motor neurons, so the treatment is a plasma exchange. Blood is circulated out of my body, the plasma is removed and replaced with albumin, then goes back into me. Doing that removes the antibodies that are attacking my nerves. Unfortunately, nerves don't just regrow immediately and so a recovery will take a very long time.

I'm hesitant to say this is good news until the treatment starts showing results.