I ended up with an unexpected week off of all appointments this week. That's right - no physio, no doctors, no IVIG - crazy. So, what to do? Well, for a start, take my home exercises up a notch by increasing weights and time on the bike and standing whenever someone was around to spot me. Housecleaning also featured prominently as I had time and energy to really go at it. I think I spent so much time sitting still and watching Netflix or reading over the past year that I am no longer able to do that for long, especially during the daytime, so I had to find things to do. I decided to throw caution to the wind and expand my horizons in the kitchen.
I divide progression into two categories - the physical with an ultimate goal of walking unassisted and functional with an ultimate goal of doing all the things in the house that I once took for granted. I did not make any great physical strides this week, but I made some significant functional progress. On Thursday I baked a cake. By myself. It was a pumpkin spice cake made with squash that I baked, also by myself. I used my grabber to turn on the oven and to get the spices and ingredients that were out of reach. I set everything that I needed on the table and took my time. It worked out well - I even made icing. When all was finished I carefully replaced the spices in the cupboard and decided to try something else - dishes. I now know how little kids must feel helping with dishes. I am able to reach for the taps and into the sink albeit a little awkwardly. I did it though - washed a load of dishes in the sink and got them safely into the drying rack. Putting dishes away in the upper cupboards is beyond my grabber's strength so I left them to drip dry.
With that accomplishment under my belt I decided to brave the coffee pot. We drink coffee from an Italian stove top moka pot, not a regular drip machine. The moka pot screws together and must be quite tight to work. I found on Friday that I could unscrew the pot - yay! Unfortunately when I put it back together and settled it on the burner, I did not get it tight enough so the coffee did not really work out. Sigh. Not being one to take defeat lightly, I decided to try again on Saturday afternoon and it worked! You have no idea how fantastic it is to be able to make my own coffee again. It is very exciting to me. Finally, I put my new found skills to work and made chilli for dinner. I not only cut everything up, I stirred the pot and added the spices. Scott did help by opening the cans, which was appreciated as I'm not sure that my hand strength is up to the can opener.
My conclusion about all of this - I am now almost entirely independent in the house. I can dress, clean and feed myself like a grown up. If only I could get downstairs to let the dog out...
Sunday, October 30, 2016
Monday, October 24, 2016
CIDP And Me - Power To The People
Eek! I let almost a month go by without an update - sorry about that. Maybe it's a sign that things are relatively stable and, therefore, unblogworthy.
Overall things are pretty good right now. My strength continues to slowly improve and I am getting a little more stable on my feet. I'm not quite cleared to walk with the walker at home but I am getting proficient at standing with it and using it to get in and out of chairs. My hands are actually improving these days, which is a welcome change. I was even able to open a screw-top bottle of wine all by myself a week or so ago (hallelujah!). My new nerve pain meds are helping a fair bit and I no longer feel like severing my feet on a daily basis. Finally, I discovered that I can slide myself off of my chair and down to a mat and then back up again using a fitness step to shorten the distance. This is a good test of my arm strength but has an ulterior motive - yoga! I hope to find an accommodating class in an accessible space as soon as my step arrives from Amazon. I'm also hoping to use this new skill to allow me to do my home exercises on the mat instead of the bed. We shall see...
Now to the title of the blog - Power to the People. I had a victory over the medical system last week and I'm still pretty pleased about it. Here is what happened...
Last Monday I went for IVIG as usual. At some point during the infusion a nurse came in and asked if anyone had talked to me yet. When I asked what it was about she told me that they were moving my IVIG to the northside hospital because it is closer to my house and I'm now able to transfer with a walker and, therefore, can get into their infusion chairs. I was told that this was a done deal and that it would start on my next infusion week. I was shocked and annoyed. I asked what I was supposed to do about physiotherapy as I go everyday on infusion weeks. Physiotherapy is not available at the northside so I would need to make other arrangements. It would also really complicate my ride rotation. Just when you get into a nice, reliable, beneficial routine, they throw a wrench at you. I was not told who made this decision or who I could talk to about it.
A few minutes later another nurse came in and I told her what happened. She knew and was possibly as pissed off as I was. She left the room and came back with a card for me. The card had the contact information for the patient advocate. She told me to call and made me promise not to say who gave me the number. I left IVIG pretty grumpy and angry and went over to physio. I told them what was happening and they said we would figure something out but the daily sessions would not be likely (I'm not actually supposed to get more than 2-3 sessions a week).
I called the patient advocate number when I got home - figured why not try that route. She was very nice and took down my information and my concerns. She explained that I should hear back from her in a week or so. I was glad to have someone else fighting my battle but did not have high hopes.
The next day I went to IVIG and physio as normal and got home at around 12:30. The phone rang at 1:20 and it was the patient advocate. She was calling to tell me that they agreed to keep things as they are and that they had not considered the physiotherapy part of my care. I thanked her profusely and that was that. For once I won! I'm definitely keeping her number handy for the next time someone throws a wrench at me. It was very nice to have someone else handle the confrontation.
Everyone was happy with the outcome at IVIG and my physiotherapist gave me a high five and told me she was relieved, as things are going so well. So there it is, we all (well me) will infuse happily ever after at the regional hospital.
I do have one more amusing anecdote to share in this post. It is totally unrelated to healthcare but may provide a little slice of life in a wheelchair...
As most of you know I sing with the Cape Breton Chorale. Well, we had our first concert of the season as part of Celtic Colours. The venue and staging was out of our control, so the accessibility was a bit of an unknown. Turns out the church is not very accessible at all. There is a very steep concrete ramp to get in the building but once inside there is only one track for me to take to the stage - right up the middle aisle. My chair, which is quite small, is too wide to get down the side aisles. OK, not the end of the world.
Next issue: stairs. There are 3 stairs to get up to the top of the stage platform - placed front and centre. You see, not only are the side aisles too narrow, the side stairs are as well. The only solution is to carry me up the stairs - one person with the back of the chair and two at the front. Lovely. I must say that I really dislike having to be carried up stairs. Especially by people who are not practised at it. I also really did not relish the attention that this act would inevitably cast my way. But what can you do. I swallowed my pride and made sure my porters were well instructed. I also made sure that my surgeon was one of them - I figure he doesn't want to see me in the OR again anytime soon. This went well in rehearsal.
We arrived in the afternoon the day of the concert for our sound check. At this point the stairs had disappeared! We had to argue with the stage people to replace them and, after some grumbling, they were returned. At this point part of me just wanted to give the show a pass and go home, but I persevered. The next complication came for the dinner (we were singing for our dinner... sorry). The dinner was in the attached hall and involved more unexpected stairs. Apparently there is a way through the kitchen without stairs but that would have involved off-roading down a grassy hill to get to the door. Instead, I was carried up and down yet another set of stairs.
I provided a bit of a 'pre-game show' at the concert. I wheeled up to the front and hung out by the front rows once the doors opened. There was no subtle or out of the way place for me to wait. Five minutes or so before the choir was set to take the stage my porters arrived and carried me up - with 200 hundred people watching. Lovely. I then had the privilege sitting alone on stage for what felt like an hour but was really just a few minutes. The concert itself went well and the audience seemed to enjoy it.
Of course, I had to now come off the stage. We were the first of 3 acts so I was not able to discretely wait until the audience started dispersing. The choir filed off through the sides and I was left with my porters, well two of them anyway. The MC did not see me or clue in so we were left visibly waiting while he chatted away to the audience. I was also wondering what happened to porter three and trying to figure out how this would work.
Eventually the MC saw us and turned very red. He stepped aside for us and we wrangled one of the stage hands to help me down. I made it down safely and was welcomed with a round of applause. I wheeled to the dark anonymity of the back of the church as quickly as I could and recovered from my embarrassment. Not that I'm embarrassed to be in a chair or anything - I just hate being the centre of attention like that.
So there you have it - the price we pay for our art...
Overall things are pretty good right now. My strength continues to slowly improve and I am getting a little more stable on my feet. I'm not quite cleared to walk with the walker at home but I am getting proficient at standing with it and using it to get in and out of chairs. My hands are actually improving these days, which is a welcome change. I was even able to open a screw-top bottle of wine all by myself a week or so ago (hallelujah!). My new nerve pain meds are helping a fair bit and I no longer feel like severing my feet on a daily basis. Finally, I discovered that I can slide myself off of my chair and down to a mat and then back up again using a fitness step to shorten the distance. This is a good test of my arm strength but has an ulterior motive - yoga! I hope to find an accommodating class in an accessible space as soon as my step arrives from Amazon. I'm also hoping to use this new skill to allow me to do my home exercises on the mat instead of the bed. We shall see...
Now to the title of the blog - Power to the People. I had a victory over the medical system last week and I'm still pretty pleased about it. Here is what happened...
Last Monday I went for IVIG as usual. At some point during the infusion a nurse came in and asked if anyone had talked to me yet. When I asked what it was about she told me that they were moving my IVIG to the northside hospital because it is closer to my house and I'm now able to transfer with a walker and, therefore, can get into their infusion chairs. I was told that this was a done deal and that it would start on my next infusion week. I was shocked and annoyed. I asked what I was supposed to do about physiotherapy as I go everyday on infusion weeks. Physiotherapy is not available at the northside so I would need to make other arrangements. It would also really complicate my ride rotation. Just when you get into a nice, reliable, beneficial routine, they throw a wrench at you. I was not told who made this decision or who I could talk to about it.
A few minutes later another nurse came in and I told her what happened. She knew and was possibly as pissed off as I was. She left the room and came back with a card for me. The card had the contact information for the patient advocate. She told me to call and made me promise not to say who gave me the number. I left IVIG pretty grumpy and angry and went over to physio. I told them what was happening and they said we would figure something out but the daily sessions would not be likely (I'm not actually supposed to get more than 2-3 sessions a week).
I called the patient advocate number when I got home - figured why not try that route. She was very nice and took down my information and my concerns. She explained that I should hear back from her in a week or so. I was glad to have someone else fighting my battle but did not have high hopes.
The next day I went to IVIG and physio as normal and got home at around 12:30. The phone rang at 1:20 and it was the patient advocate. She was calling to tell me that they agreed to keep things as they are and that they had not considered the physiotherapy part of my care. I thanked her profusely and that was that. For once I won! I'm definitely keeping her number handy for the next time someone throws a wrench at me. It was very nice to have someone else handle the confrontation.
Everyone was happy with the outcome at IVIG and my physiotherapist gave me a high five and told me she was relieved, as things are going so well. So there it is, we all (well me) will infuse happily ever after at the regional hospital.
I do have one more amusing anecdote to share in this post. It is totally unrelated to healthcare but may provide a little slice of life in a wheelchair...
As most of you know I sing with the Cape Breton Chorale. Well, we had our first concert of the season as part of Celtic Colours. The venue and staging was out of our control, so the accessibility was a bit of an unknown. Turns out the church is not very accessible at all. There is a very steep concrete ramp to get in the building but once inside there is only one track for me to take to the stage - right up the middle aisle. My chair, which is quite small, is too wide to get down the side aisles. OK, not the end of the world.
Next issue: stairs. There are 3 stairs to get up to the top of the stage platform - placed front and centre. You see, not only are the side aisles too narrow, the side stairs are as well. The only solution is to carry me up the stairs - one person with the back of the chair and two at the front. Lovely. I must say that I really dislike having to be carried up stairs. Especially by people who are not practised at it. I also really did not relish the attention that this act would inevitably cast my way. But what can you do. I swallowed my pride and made sure my porters were well instructed. I also made sure that my surgeon was one of them - I figure he doesn't want to see me in the OR again anytime soon. This went well in rehearsal.
We arrived in the afternoon the day of the concert for our sound check. At this point the stairs had disappeared! We had to argue with the stage people to replace them and, after some grumbling, they were returned. At this point part of me just wanted to give the show a pass and go home, but I persevered. The next complication came for the dinner (we were singing for our dinner... sorry). The dinner was in the attached hall and involved more unexpected stairs. Apparently there is a way through the kitchen without stairs but that would have involved off-roading down a grassy hill to get to the door. Instead, I was carried up and down yet another set of stairs.
I provided a bit of a 'pre-game show' at the concert. I wheeled up to the front and hung out by the front rows once the doors opened. There was no subtle or out of the way place for me to wait. Five minutes or so before the choir was set to take the stage my porters arrived and carried me up - with 200 hundred people watching. Lovely. I then had the privilege sitting alone on stage for what felt like an hour but was really just a few minutes. The concert itself went well and the audience seemed to enjoy it.
Of course, I had to now come off the stage. We were the first of 3 acts so I was not able to discretely wait until the audience started dispersing. The choir filed off through the sides and I was left with my porters, well two of them anyway. The MC did not see me or clue in so we were left visibly waiting while he chatted away to the audience. I was also wondering what happened to porter three and trying to figure out how this would work.
Eventually the MC saw us and turned very red. He stepped aside for us and we wrangled one of the stage hands to help me down. I made it down safely and was welcomed with a round of applause. I wheeled to the dark anonymity of the back of the church as quickly as I could and recovered from my embarrassment. Not that I'm embarrassed to be in a chair or anything - I just hate being the centre of attention like that.
So there you have it - the price we pay for our art...
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