I have a new enemy and it's name is Benadryl. Seriously, that stuff is just not cool. Now that that is out in the open, I'll take a few steps back and tell you about last week.
Last Monday was the first day of Spring, so there was a snow storm. The snow was coming down so heavily in the morning that we decided not to make the trek in for IVIG. I hated to cancel as it would mean a make-up day the following week, but it was the right thing to do. By Tuesday morning the snow had been replaced by a nice steady stream of freezing rain. However, the roads were ploughed and we have studded tires, so we decided to brave the elements. As an aside, it was so icy Scott had to wear cramp-ons to wheel me down the ramp (I was not in the mood to start my career in wheelchair luge). OK, I make it to IVIG and everything is great, until my first rate increase... (IVIG is a bottle of clear, goopy blood plasma that is given by IV. The drip rate increases throughout the infusion). I started to feel chilly and asked for a blanket (this in itself is rare). Within five minutes I was shivering uncontrollably and realized something was wrong. I rang the bell for the nurse and a kerfuffle ensued.
It seemed I was having an allergic reaction. It was dealt with quickly and skillfully and I am fine. I was given IV Benadryl and Steroids and then subjected to a number of tests and observations. Apparently this is not an uncommon occurrence as IVIG is a blood product and no two bottles are exactly the same. However, I now have to take precautions before each infusion. Enter my new enemy number 1 - Benadryl. I am very sensitive to the 'may cause drowsiness' warning on all drugs, so 2 Benadryl at 8 am does not make for a pleasant or alert day. IVIG is tiring enough, but I have now discovered a new level of foggy, groggy exhaustion. I do not recommend it. I'm really not sure how physio and ot are going to work out on IVIG weeks now, but I'll figure it out. My neurologist did say that we could try Reactine if Benadryl is too much - I am going to ask about this next week. I realize that many people who get IVIG have Benadryl beforehand but I don't know how they manage. It would be less annoying if I only had 1 infusion day, but I go for 5 days every two weeks... that is a lot of time to be down and out. No thank you. Course, it is what it is. I will adapt.
In other news physio continues to go really well and I am getting more and more mobile. I did something yesterday that I have not been able to do in over a year and a half - I stood up and hugged Scott. It may not sound like much, but we both thought it was pretty awesome.
On a more practical note, I'm using the rollator at home about %60-70 of the time. This is going really well and I'm figuring out how to get by (using the basket and seat to carry things). As of today I am cleared to try taking it into the world - possibly the grocery store where things are level and there is lots of room. This both excites and terrifies me. I'll be sure to blog about it next time...
Ciao for now.
Wednesday, March 29, 2017
Friday, March 3, 2017
CIDP and Me - Into the Wild
It has been a busy few weeks here in CIDP-land so I figure a blog post is in order.
This update begins with a bit of applied learning - brushing my teeth while standing. One day I decided to try something crazy - stand up at the bathroom sink. I thought about some of my activities at OT and PT and realized that brushing my teeth while standing (chair right behind me and one hand on the counter for balance) should be easy to manage. It was and I had a new home-mission. I now stand whenever and wherever I can. I stand to get into the car, stand to turn on an element on the stove, stand to put away dishes, stand to wash dishes. It's great and easily fills my daily sit-stand quota. I counted the other morning and found I stood 6 times in the course of making breakfast. Think about how many times you stand up in the run of a day. Now think of each of those stands like a squat at the gym. All this standing is a great workout for me. It is also exhausting.
I'm still not very good at standing without something for balance. I think my record at physio is about 25 seconds. But that involved intense concentration and was in an 'ideal' setting. The issue here is my weak core. I believe I mentioned this before, but my core is an almost worrying obsession of my physiotherapist. My upper legs are actually 'strong' now, which makes everyone very happy. It also means my only prescribed necessary daily exercises are for my core. Apparently I will have a great bathing suit body under all the medication-induced (really...) flab.
While my recovery is going well and things are improving, it hasn't all been roses. We had a bit of a reality check with the neurologist. He is very happy but says that I am not likely to get much more back in my feet and that I am looking at a lifetime of walking with afos (foot braces that wrap around my calves. Very sexy). I'm over the moon that walking is the prognosis but it did bring home the reality and permanence of this thing. I spend so much time focusing on getting through this acute phase that I forget that I will still have to deal with it in some form when things become 'normal' again. I realized that walking with afos may be limiting. Short distances, sure, but what about 3-hour hikes over rocky cliffs? I likely wont be able to run, so hopefully the zombie apocalypse holds off . No more sandals or shorts... I'll also not likely be able to drive a car normally - we'll need hand controls. This is actually kind of cool and we've been referred to a specific OT to start the process. I had a bit of a pity-party about all of this last week but have moved on. Seriously, after all the past 2 years have thrown at me, I will be so thrilled to walk and drive at all. I don't really care if I have to make some modifications.
The other news around here is that we have found a new 'horcrux' and will be bringing it home on Monday. The 'horcrux' (I call all of my mobility aids horcuxes) is a 4-wheeled walker, or rollator. It has 4 wheels(seriously), breaks, and a seat for when I get tired. I'm not quite ready to hit the mall with it, but I am cleared to use it at home. I believe this will mean we can put the 2-wheeled walker away for now. I have also successfully rid myself of two other 'horcruxes' in the past month or so - my transfer board and grabber, so it is OK to bring in another. I'll try to post an action pic of the rollator next time.
I had a bit of fun this morning. I went 4-wheeling! (the ATV kind with a motor and big knobby tires, not the rollator kind). It is always good to have at least one friend with a farm, toys, and some imagination. Hiking is one of my favourite things to do and not getting out in the woods has really been hard for me... My friends knew this and decided to come up with a solution. We were originally supposed to go snowmobiling but the snow melted. Hence the 4-wheeler. I drove the 'bike' while the other two walked. We headed into the back woods and fields with five dogs and one pygmy goat in tow - quite the crew. It was a blast. I think Barney would liken the experience to a trip to doggy-Disney. I found it pretty easy to control the 4-wheeler (though I stayed in first gear) and it was simple enough to get in and out of. I hope to repeat it before the ground gets too muddy.
So there it is. Things are going pretty well in my recovery and I'm happy. More to come soon...
Meanwhile enjoy this pic of me and Barney on the 'bike'. Note: he did not actually ride with me for the hike.
This update begins with a bit of applied learning - brushing my teeth while standing. One day I decided to try something crazy - stand up at the bathroom sink. I thought about some of my activities at OT and PT and realized that brushing my teeth while standing (chair right behind me and one hand on the counter for balance) should be easy to manage. It was and I had a new home-mission. I now stand whenever and wherever I can. I stand to get into the car, stand to turn on an element on the stove, stand to put away dishes, stand to wash dishes. It's great and easily fills my daily sit-stand quota. I counted the other morning and found I stood 6 times in the course of making breakfast. Think about how many times you stand up in the run of a day. Now think of each of those stands like a squat at the gym. All this standing is a great workout for me. It is also exhausting.
I'm still not very good at standing without something for balance. I think my record at physio is about 25 seconds. But that involved intense concentration and was in an 'ideal' setting. The issue here is my weak core. I believe I mentioned this before, but my core is an almost worrying obsession of my physiotherapist. My upper legs are actually 'strong' now, which makes everyone very happy. It also means my only prescribed necessary daily exercises are for my core. Apparently I will have a great bathing suit body under all the medication-induced (really...) flab.
While my recovery is going well and things are improving, it hasn't all been roses. We had a bit of a reality check with the neurologist. He is very happy but says that I am not likely to get much more back in my feet and that I am looking at a lifetime of walking with afos (foot braces that wrap around my calves. Very sexy). I'm over the moon that walking is the prognosis but it did bring home the reality and permanence of this thing. I spend so much time focusing on getting through this acute phase that I forget that I will still have to deal with it in some form when things become 'normal' again. I realized that walking with afos may be limiting. Short distances, sure, but what about 3-hour hikes over rocky cliffs? I likely wont be able to run, so hopefully the zombie apocalypse holds off . No more sandals or shorts... I'll also not likely be able to drive a car normally - we'll need hand controls. This is actually kind of cool and we've been referred to a specific OT to start the process. I had a bit of a pity-party about all of this last week but have moved on. Seriously, after all the past 2 years have thrown at me, I will be so thrilled to walk and drive at all. I don't really care if I have to make some modifications.
The other news around here is that we have found a new 'horcrux' and will be bringing it home on Monday. The 'horcrux' (I call all of my mobility aids horcuxes) is a 4-wheeled walker, or rollator. It has 4 wheels(seriously), breaks, and a seat for when I get tired. I'm not quite ready to hit the mall with it, but I am cleared to use it at home. I believe this will mean we can put the 2-wheeled walker away for now. I have also successfully rid myself of two other 'horcruxes' in the past month or so - my transfer board and grabber, so it is OK to bring in another. I'll try to post an action pic of the rollator next time.
I had a bit of fun this morning. I went 4-wheeling! (the ATV kind with a motor and big knobby tires, not the rollator kind). It is always good to have at least one friend with a farm, toys, and some imagination. Hiking is one of my favourite things to do and not getting out in the woods has really been hard for me... My friends knew this and decided to come up with a solution. We were originally supposed to go snowmobiling but the snow melted. Hence the 4-wheeler. I drove the 'bike' while the other two walked. We headed into the back woods and fields with five dogs and one pygmy goat in tow - quite the crew. It was a blast. I think Barney would liken the experience to a trip to doggy-Disney. I found it pretty easy to control the 4-wheeler (though I stayed in first gear) and it was simple enough to get in and out of. I hope to repeat it before the ground gets too muddy.
So there it is. Things are going pretty well in my recovery and I'm happy. More to come soon...
Meanwhile enjoy this pic of me and Barney on the 'bike'. Note: he did not actually ride with me for the hike.
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