I'm probably going to write another two posts this weekend - a sort of 'week in review' update and a more general muse about the pros and cons of medical diagnosis in the information age and why statistics are meaningless (stay tuned!). For now I will give a brief (ish) review of my week.
All in all I had a pretty good week, though it was not entirely rosy. It was an IVIG week, which means we had to get up at 6am each day and schlep to the hospital. Now, I know that I used to get up earlier than this to walk Barney, but I'm out of practice and mornings are easier when they start with a walk in the woods. Anyway, it is what it is and we do what we have to do. IVIG has become very routine, really. The thing about routine though is that one can become too used to it. On Monday I found myself faced with an unexpected change - the pharmacy at the hospital sent down a different brand of IVIG for me. Not a huge deal, but it took so long to get used to my usual, I hate any little changes that come up. The new brand necessitated a re-calculation of infusion rates and a little closer observation to make sure I tolerated it. I received it all week and hope to get back to my regular one next time (apparently it was a supply issue).
Monday was fine and uneventful.I had a nice long nap in the afternoon. I also managed to clean most of the fridge before we went out for a fun supper with friends. Tuesday started out OK and the infusion itself went off without incident, however that soon changed. I felt immediately flushed and lightheaded when I stood up at physio, so we were unable to do much of a walk. I know that this can happen and there is nothing I can do about it. Not every day can be a good one. But it sucked and I couldn't help feeling frustrated. I wondered if I was dehydrated and decided to bring a Gatorade with me the next day. By the time Scott picked me up I had developed an IVIG headache (the first one in many months). When we got home I popped a couple Tylenol and fell into a deep afternoon sleep. When I woke up I felt much better. I did bring Gatorade on Wednesday and made sure to really hydrate. Seems I forgot to think this through though - Gatorade is full of sodium and I have high blood pressure... Oops. I felt much better though and had a more productive physio session. I went out for my Wednesday lunch date feeling my 'new normal' and did not get another headache - things started looking up.
On Thursday I replaced the Gatorade with water and though my pressure was still up a bit, everything was fine. I had another good physio session - this tine working on standing and weight shifting in the bars instead of a walk. A friend picked me up and we went off for lunch and to drop in on a retirement celebration at work. Yes, work. I haven't been by for a visit and really haven't seen any of my colleagues since the fall when I was in hospital. I also didn't tell anyone about my plan to attend (I was worried that I would not be up to it and didn't want to commit to anything). Of course, my friend and I arrived during the presentation so everyone was immediately aware of our presence. So much for sneaking in... It was great to see everyone and to catch up a little bit. I lasted a little over an hour before exhaustion washed over me. It was really humid out too, so the room was a little hot and muggy, which didn't help. I'm glad I went and hope that less time will elapse before I see everyone again. I pretty much crashed for the rest of the afternoon and evening.
Today was the final day of IVIG for the week and a big day in physio with a plan to review my home program. I made sure I was hydrated and rested so I could really show off the little improvements since we last reviewed things. I did not disappoint (myself or my physiotherapist). She was thrilled to see the increased mobility and flexibility in my legs, not to mention the strength gains. She added a few new exercises and suggested ways to increase the intensity of my current ones. She also jotted down strength scores for my main movements. I'm not sure what the technical term is, but each movement is ranked from 1-5 (with a +/- option for each) based on ones ability to perform actions. I have had many of these tests over the past year and was really happy to see 1s changed to 2s and 2s changed to 3s. I even managed a 4+ for my adductors! The test measures if one is able to perform the action passively, against gravity, and with resistance. I am now able to go against gravity with almost everything (though I can't always do a complete motion), which is great. I improved in every action that we tested.- thankfully we did not look at my hands and arms. We finished the session in the parallel bars where I was much steadier on my feet than even yesterday. It was a really good session and great way to end the week. Well, a good physio session and ice cream on the way home were a great way to end the week (I do love ice cream...). I'm not able to give any timeline, diagnosis or progression plan - but things continue to gradually improve and I'm pleased with that. I'm looking forward to showing off to my neurologist when I see him in 3 weeks!
So there you have it - a week in review. I'm heading into the long weekend ready to relax and recharge with no plans, appointments, or commitments - bliss.
Ciao for now.
Update - just cause I'm happy and love sharing the littlest details of my recovery, I'm adding another wee paragraph. This morning I was able to shave my legs all by myself for the first time since October! This sounds so simple and silly but it is huge and exciting. It means I have enough strength, flexibility and balance to lift up and position my legs on the edge of the tub while wielding a sharp blade. It also means that Scott is no longer my esthetician, which must make him pretty happy. It is neat to see the practical applications and results of all of the exercises I do. So yay me!
Friday, July 29, 2016
Sunday, July 24, 2016
CIDP and Me - A Look on the Bright Side
In the spirit of tempering rants with more positive thoughts and updates I am going to share some of the positive things that have happened as a result of CIDP. Really - it hasn't all been a physical, emotional and existential struggle. I'll use a good ole top ten list to illustrate what I mean (maybe if I get good enough I can write for Buzfeed when I grow up;)).
Here it is...
1. Quality Time with Scott and Barney. It is nice to be out of the rat race (at least for now) and able to really get to spend time together. We can't do all the things we used to (hiking, beaches, etc) but we do still have a good time and a lot of laughs. I sure did pick the right person and dog for me (mushy, I know) and this experience has just brought us even closer together.
2. Weight Loss. I've mentioned this before and wont dwell on it too much but, for me at least, this has been an unexpected and welcome side effect. I was warned about weight gain and moonfaced puffiness when I started taking Prednisone but (fingers crossed) have not experienced any of it. Like so many of us I struggle with my weight and have a closet full of an array of sizes. I was working hard to lose weight when all this started and am thrilled that it continued. I hope it isn't all muscle atrophy and not just a result of poor health. I assure you that I continue to eat well and substantially. I did get the increased appetite to go with Prednisone after all (or maybe it is simply the joy of eating non-hospital food again).
3. Time for Reading. To paraphrase an old Twilight Zone episode: 'There is Time Now." And, unlike the poor guy in the episode, my glasses are in one piece and I am able to make the most of it. I have read a little of everything over the past year. There were times that my brain was unable to handle anything heavier than an article in Canadian Living or a fluffy bit of chic lit. But there have also been times where I have delved into non fiction verging on academic. I have read mysteries, thrillers, epic fantasy series, articles about physiology and neurology, textbooks on coding Java, biographies, analyses of current events, and literary classics that have been on my 'I'll read one day' list for years. It's great. I typically have several on the go at a time so I have something to turn to whatever my mood may be. My current favourite is Moby Dick - seriously, I'm reading it for the first time and it's a lot of fun.
4. 'Spring Cleaning' can happen at anytime with no big rush to it. I am really enjoying taking a room (or part of a room) a day (or week) to sort through and really clean. Little by little I am decluttering and reorganizing the main floor of the house. I've filled bags and boxes for Value Village - next mission will be to transport said bags and boxes - purging our shelves and drawers of ancient t-shirts and books that we would never read. I have, after years of procrastination, gone through my spice cupboard and replaced unidentifiable and dusty herbs and spices with fresh in new and labelled (what a concept!) jars. All of this is deeply and magically satisfying.
5. Daily Cleaning. Yes, daily. I have become one of those housewives who dusts before you can actually see any dust. I am also deeply entangled in the epic, age-old struggle of Man Vs Beast (or, in this case, Woman Vs Dog Hair). Every morning I wake to see tufts of grey hair (I know, he is black and tan but somehow the hair that falls is always grey) happily dancing around in the wake of the fan. It tries to elude me by hiding in nooks and crannies and under furniture but it is no match for my trusty broom and dustpan. Actually, that is a lie. The broom and dustpan are rarely entirely victorious. I am often tempted by the lure of the miraculous modern convenience and environmental travesty that is the Swiffer and it's cousin the Swiffer Wet Jet, but so far have resisted. Instead I wage my battle old school with a feather duster, cloth and broom. On rare occasions I will bring out the heavy artillery (vacuum) but I have not yet mastered the art of wielding such a double-handed weapon whilst maneuvering a wheelchair. The same can be said for mopping - a tricky and messy business, indeed. The result is a relatively tidy house with precious hair-free moments to enjoy each day. This makes me happy.
6. Time for Listening to Music. I quickly realized that CBC Radio just isn't what it used to be and that my brain cannot handle much of the drivel that is broadcast each day. With a few age old exceptions (As it Happens, Sunday Edition, The Current, This is That) I find the programming trite and annoying, so most days, I turn off the radio and turn to playlists, online radio or my own collections. A little Bossa Nova to go with cleaning - nothing makes me smile quite like Bossa Nova - you can't be grumpy with that on. A little choral music for reading or my own little karaoke. I had to sit out from choir this year and I really missed it. I will go back in September, but until then I sing along with the best in the world:). A little throwback 90s music does the trick if I am feeling angsty or nostalgic. And one can never go wrong with an afternoon of classic jazz. You get the idea. The likes of Neil Young and Bob Dylan find their way in there too, as does Paul Simon (Graceland is a good accompaniment to my exercise routine). I'm not really branching out into new territory and am definitely out of touch with current trends, but that's OK.
7. Netflix. Ah Netflix, what did we do without you? Even though you are cruel and took away my coveted vpn US, UK, and German access, I remain your faithful servant. We got rid of cable years ago and tend to rely on Netflix for our shows and movies. It took months of binges but I am pretty much caught up on all the shows that interest me (and a few nostalgic re-watched series). I do wish there was a 'random' play option though. Imagine you could add shows you like to a list and then just ask for a random episode to come on - not all shows need to be binged or watched sequentially. I try not to spend too much time watching these days, but I would have been lost without Netflix in the winter and spring when it was dark and I had no energy.
8. Lunch. I've kind of become a 'lady who lunches.' I have a weekly lunch date with one friend and can generally find another to accompany me on other days. I enjoy this as it gets me out of the house for something other than appointments and gives me much needed social interaction. Not to mention that I like food, especially when I don't have to make it or clean up. I'm getting to know what restaurants are accessible (or accessible enough) and try to vary it as much as possible. My energy level is best midday so a lunch date is often better than dinner (or supper for my maritimer readers). I often follow these with a long afternoon nap, which is another nice thing I get to do guilt-free.
9. Writing. It may be a bit narcissistic but I am really enjoying writing this blog. It is fun to try and express what I am going through and I have reconnected with so many people as a result. Thank you for humouring me and reading! I'm also writing personal journals and thoughts on a fairly regular basis. It is therapeutic and fun. I always enjoyed writing but haven't allowed myself much time for it in my adult life. I'm not working on my great novel or memoir or anything like that, but it sure is a great outlet.
10. Me. I have learned a lot about myself through this experience. I have had time for deep reflection and thought and also time to step back and observe. I have a better understanding of what matters to me and what I can throw away. It turns out that I like myself, which is a bonus:) I don't consider myself especially strong or tenacious but I know I can handle whatever comes my way and remain fairly positive and optimistic about it. I know that I am stubborn and that is a good thing that has helped me get through a lot of crap. I also know when I need to let go a little and look to those around me for support and a shoulder to cry on. We don't take enough time these days to understand ourselves and I am grateful to have the opportunity to do so, even if the circumstances are less than desirable. OK, I'll stop with the new age, self-help gobbelty goop now.
There you have it - a positive outlook for a Sunday where the sun keeps beating out the storms (trying to be literary there but really, it was stormy when I started writing this and is now the sky is blue).
Cheers and have a great week!
Here it is...
Ten Things That Don't Suck About Having CIDP:
1. Quality Time with Scott and Barney. It is nice to be out of the rat race (at least for now) and able to really get to spend time together. We can't do all the things we used to (hiking, beaches, etc) but we do still have a good time and a lot of laughs. I sure did pick the right person and dog for me (mushy, I know) and this experience has just brought us even closer together.
2. Weight Loss. I've mentioned this before and wont dwell on it too much but, for me at least, this has been an unexpected and welcome side effect. I was warned about weight gain and moonfaced puffiness when I started taking Prednisone but (fingers crossed) have not experienced any of it. Like so many of us I struggle with my weight and have a closet full of an array of sizes. I was working hard to lose weight when all this started and am thrilled that it continued. I hope it isn't all muscle atrophy and not just a result of poor health. I assure you that I continue to eat well and substantially. I did get the increased appetite to go with Prednisone after all (or maybe it is simply the joy of eating non-hospital food again).
3. Time for Reading. To paraphrase an old Twilight Zone episode: 'There is Time Now." And, unlike the poor guy in the episode, my glasses are in one piece and I am able to make the most of it. I have read a little of everything over the past year. There were times that my brain was unable to handle anything heavier than an article in Canadian Living or a fluffy bit of chic lit. But there have also been times where I have delved into non fiction verging on academic. I have read mysteries, thrillers, epic fantasy series, articles about physiology and neurology, textbooks on coding Java, biographies, analyses of current events, and literary classics that have been on my 'I'll read one day' list for years. It's great. I typically have several on the go at a time so I have something to turn to whatever my mood may be. My current favourite is Moby Dick - seriously, I'm reading it for the first time and it's a lot of fun.
4. 'Spring Cleaning' can happen at anytime with no big rush to it. I am really enjoying taking a room (or part of a room) a day (or week) to sort through and really clean. Little by little I am decluttering and reorganizing the main floor of the house. I've filled bags and boxes for Value Village - next mission will be to transport said bags and boxes - purging our shelves and drawers of ancient t-shirts and books that we would never read. I have, after years of procrastination, gone through my spice cupboard and replaced unidentifiable and dusty herbs and spices with fresh in new and labelled (what a concept!) jars. All of this is deeply and magically satisfying.
5. Daily Cleaning. Yes, daily. I have become one of those housewives who dusts before you can actually see any dust. I am also deeply entangled in the epic, age-old struggle of Man Vs Beast (or, in this case, Woman Vs Dog Hair). Every morning I wake to see tufts of grey hair (I know, he is black and tan but somehow the hair that falls is always grey) happily dancing around in the wake of the fan. It tries to elude me by hiding in nooks and crannies and under furniture but it is no match for my trusty broom and dustpan. Actually, that is a lie. The broom and dustpan are rarely entirely victorious. I am often tempted by the lure of the miraculous modern convenience and environmental travesty that is the Swiffer and it's cousin the Swiffer Wet Jet, but so far have resisted. Instead I wage my battle old school with a feather duster, cloth and broom. On rare occasions I will bring out the heavy artillery (vacuum) but I have not yet mastered the art of wielding such a double-handed weapon whilst maneuvering a wheelchair. The same can be said for mopping - a tricky and messy business, indeed. The result is a relatively tidy house with precious hair-free moments to enjoy each day. This makes me happy.
6. Time for Listening to Music. I quickly realized that CBC Radio just isn't what it used to be and that my brain cannot handle much of the drivel that is broadcast each day. With a few age old exceptions (As it Happens, Sunday Edition, The Current, This is That) I find the programming trite and annoying, so most days, I turn off the radio and turn to playlists, online radio or my own collections. A little Bossa Nova to go with cleaning - nothing makes me smile quite like Bossa Nova - you can't be grumpy with that on. A little choral music for reading or my own little karaoke. I had to sit out from choir this year and I really missed it. I will go back in September, but until then I sing along with the best in the world:). A little throwback 90s music does the trick if I am feeling angsty or nostalgic. And one can never go wrong with an afternoon of classic jazz. You get the idea. The likes of Neil Young and Bob Dylan find their way in there too, as does Paul Simon (Graceland is a good accompaniment to my exercise routine). I'm not really branching out into new territory and am definitely out of touch with current trends, but that's OK.
7. Netflix. Ah Netflix, what did we do without you? Even though you are cruel and took away my coveted vpn US, UK, and German access, I remain your faithful servant. We got rid of cable years ago and tend to rely on Netflix for our shows and movies. It took months of binges but I am pretty much caught up on all the shows that interest me (and a few nostalgic re-watched series). I do wish there was a 'random' play option though. Imagine you could add shows you like to a list and then just ask for a random episode to come on - not all shows need to be binged or watched sequentially. I try not to spend too much time watching these days, but I would have been lost without Netflix in the winter and spring when it was dark and I had no energy.
8. Lunch. I've kind of become a 'lady who lunches.' I have a weekly lunch date with one friend and can generally find another to accompany me on other days. I enjoy this as it gets me out of the house for something other than appointments and gives me much needed social interaction. Not to mention that I like food, especially when I don't have to make it or clean up. I'm getting to know what restaurants are accessible (or accessible enough) and try to vary it as much as possible. My energy level is best midday so a lunch date is often better than dinner (or supper for my maritimer readers). I often follow these with a long afternoon nap, which is another nice thing I get to do guilt-free.
9. Writing. It may be a bit narcissistic but I am really enjoying writing this blog. It is fun to try and express what I am going through and I have reconnected with so many people as a result. Thank you for humouring me and reading! I'm also writing personal journals and thoughts on a fairly regular basis. It is therapeutic and fun. I always enjoyed writing but haven't allowed myself much time for it in my adult life. I'm not working on my great novel or memoir or anything like that, but it sure is a great outlet.
10. Me. I have learned a lot about myself through this experience. I have had time for deep reflection and thought and also time to step back and observe. I have a better understanding of what matters to me and what I can throw away. It turns out that I like myself, which is a bonus:) I don't consider myself especially strong or tenacious but I know I can handle whatever comes my way and remain fairly positive and optimistic about it. I know that I am stubborn and that is a good thing that has helped me get through a lot of crap. I also know when I need to let go a little and look to those around me for support and a shoulder to cry on. We don't take enough time these days to understand ourselves and I am grateful to have the opportunity to do so, even if the circumstances are less than desirable. OK, I'll stop with the new age, self-help gobbelty goop now.
There you have it - a positive outlook for a Sunday where the sun keeps beating out the storms (trying to be literary there but really, it was stormy when I started writing this and is now the sky is blue).
Cheers and have a great week!
Friday, July 22, 2016
Ch-Ch-Ch-Changes (Turn and Face the Strange)
This post may or may not be related to my journey with CIDP. It could just be a coming of age realization as the big 4-0 looms ever closer on the horizon. Or it could just be the rantings of a tired and slightly disgruntled consumer trying to 'keep it real' in the modern western world. Maybe it's a combination of all 3. Regardless, here is a little window into the inner workings of my mind these days. Be afraid, be very afraid!
I'll start by saying this: I am tired. I am physically tired and emotionally tired due to CIDP and the daily fight to regain my health, independence and mobility. I am also spiritually and morally tired as I sit back and watch the world fall apart and go crazy. Trump, ISIS, racism, police violence, bigotry, the never-ending struggle for equal human rights for all regardless of gender, gender identity, sexual orientation, creed, etc, the corporatization and outright corruption of everything, the overwhelming greed and selfish attitudes of vast collections of people, the continued avoidance of environmental issues and concerns... You get the idea - people are terrible people and that upsets and exhausts me.
I have lived most of my life with a fairly strong inner ethic and belief system. I attended my first protest (in support of the Mohawk people in Oka, Quebec) in 1990 at the young age of 13 or 14. I remember getting in trouble when I wore my red armband to a visit with my grandparents and dared speak my mind about the situation. It was around this time that I became a vegetarian (along with the rest of my immediate family) and started wearing animal rights propaganda. I stopped wearing leather, buying products from known animal testers and all those other righteous acts committed by the young and newly passionate. I was probably a pretty big pain in everyone's ass, but I was determined to make a difference and go to sleep each night (in my comfortable suburban bed) with a clear conscience.
As time moved along I toned down a bit. I still lived a fairly ethic-based life but contradictions and hypocrisies slipped in here and there. I stopped being preachy and waged my own quiet revolution - 'be the change you want to see' was my motto. I carried Nalegene water bottles and insulated coffee mugs with me everywhere until we learned about BPA - then I carried stainless steel equivalents. I stopped using plastic for pretty much everything, I haven't owned a microwave in over a decade, I made my own laundry soap and cleaning products, I stopped shopping online to support local business, I insisted we not buy more than 10 items a week at a major grocery store for a year... The list goes on.
For over twenty-five years I have tried to make the world (or at least my world) a better place by my lifestyle choices. And for what? I'm not saying I'm going to throw it all away and jump on the mainstream bandwagon of consumerism, but have my choices really made an impact? Other than making me feel guilty for 'slipping up' and shopping at Walmart or going through the drive-thru at McDonald's? Perhaps they have in a small way. But in the end I remain a part of the problem. No matter what I do, I am a very privileged person in this world. I am white, educated, have a stable job and income and live a life that many would dream of. I can afford to make these choices despite the fact that they are out of reach for so many even within my own community.
Is this what happens with age? Does the passion and drive that fuels the young activist start to erode and decay as one principle after another is abandoned in favour of comfort and convenience? Is this what happened to the hippies in the 1980s? And is it necessarily a bad thing? Are we right to leave the trenches of the war to the next generation? Perhaps there is hope in the Occupy Movement and enthusiasm around the likes of Bernie Sanders. I hope so, but am feeling pretty pessimistic about it. As I said, I am tired.
What does it mean? I'm not sure. One thing that has happened (big confession time) is that I have started eating chicken. I know. Insane. I'm trying not to over-analyze or evaluate this (clearly not working out given this post) but the bottom line is that my body is craving protein and my number one priority right now is to listen to my body. I'm trying to be as local and ethical as possible about this, yet I have already broken all my rules and had Wendy's. Will I continue down the slippery, meaty slide to beef, pork, etc? Maybe, I'm not ruling anything out.
I still hold many of the convictions that make me the person I am. I will continue to support farmers markets and community businesses. I will still try to minimize my ecological footprint and think about the lives of people making my clothes before grabbing the cheapest yoga pants on the rack. My new code is just to live and be happy. Find a balance that allows me to enjoy some of the comforts and conveniences while being conscious of the consequences and sacrifices required to enable my lifestyle. I'm not going to feel guilty or worry about my quiet revolution as much. I'll leave that to the young and healthy.
Rant over.
I'll start by saying this: I am tired. I am physically tired and emotionally tired due to CIDP and the daily fight to regain my health, independence and mobility. I am also spiritually and morally tired as I sit back and watch the world fall apart and go crazy. Trump, ISIS, racism, police violence, bigotry, the never-ending struggle for equal human rights for all regardless of gender, gender identity, sexual orientation, creed, etc, the corporatization and outright corruption of everything, the overwhelming greed and selfish attitudes of vast collections of people, the continued avoidance of environmental issues and concerns... You get the idea - people are terrible people and that upsets and exhausts me.
I have lived most of my life with a fairly strong inner ethic and belief system. I attended my first protest (in support of the Mohawk people in Oka, Quebec) in 1990 at the young age of 13 or 14. I remember getting in trouble when I wore my red armband to a visit with my grandparents and dared speak my mind about the situation. It was around this time that I became a vegetarian (along with the rest of my immediate family) and started wearing animal rights propaganda. I stopped wearing leather, buying products from known animal testers and all those other righteous acts committed by the young and newly passionate. I was probably a pretty big pain in everyone's ass, but I was determined to make a difference and go to sleep each night (in my comfortable suburban bed) with a clear conscience.
As time moved along I toned down a bit. I still lived a fairly ethic-based life but contradictions and hypocrisies slipped in here and there. I stopped being preachy and waged my own quiet revolution - 'be the change you want to see' was my motto. I carried Nalegene water bottles and insulated coffee mugs with me everywhere until we learned about BPA - then I carried stainless steel equivalents. I stopped using plastic for pretty much everything, I haven't owned a microwave in over a decade, I made my own laundry soap and cleaning products, I stopped shopping online to support local business, I insisted we not buy more than 10 items a week at a major grocery store for a year... The list goes on.
For over twenty-five years I have tried to make the world (or at least my world) a better place by my lifestyle choices. And for what? I'm not saying I'm going to throw it all away and jump on the mainstream bandwagon of consumerism, but have my choices really made an impact? Other than making me feel guilty for 'slipping up' and shopping at Walmart or going through the drive-thru at McDonald's? Perhaps they have in a small way. But in the end I remain a part of the problem. No matter what I do, I am a very privileged person in this world. I am white, educated, have a stable job and income and live a life that many would dream of. I can afford to make these choices despite the fact that they are out of reach for so many even within my own community.
Is this what happens with age? Does the passion and drive that fuels the young activist start to erode and decay as one principle after another is abandoned in favour of comfort and convenience? Is this what happened to the hippies in the 1980s? And is it necessarily a bad thing? Are we right to leave the trenches of the war to the next generation? Perhaps there is hope in the Occupy Movement and enthusiasm around the likes of Bernie Sanders. I hope so, but am feeling pretty pessimistic about it. As I said, I am tired.
What does it mean? I'm not sure. One thing that has happened (big confession time) is that I have started eating chicken. I know. Insane. I'm trying not to over-analyze or evaluate this (clearly not working out given this post) but the bottom line is that my body is craving protein and my number one priority right now is to listen to my body. I'm trying to be as local and ethical as possible about this, yet I have already broken all my rules and had Wendy's. Will I continue down the slippery, meaty slide to beef, pork, etc? Maybe, I'm not ruling anything out.
I still hold many of the convictions that make me the person I am. I will continue to support farmers markets and community businesses. I will still try to minimize my ecological footprint and think about the lives of people making my clothes before grabbing the cheapest yoga pants on the rack. My new code is just to live and be happy. Find a balance that allows me to enjoy some of the comforts and conveniences while being conscious of the consequences and sacrifices required to enable my lifestyle. I'm not going to feel guilty or worry about my quiet revolution as much. I'll leave that to the young and healthy.
Rant over.
Saturday, July 16, 2016
Ten Things That Suck About Having Weak Hands (and How I am Dealing With it)
I must be spending too much time online these days as I find myself thinking of top-ten lists for posts. But why not, they are kind of fun. So here is one that has been rattling around my brain for a few days: 10 things that suck about having weak hands. My focus is normally my legs and quest to get out of my wheelchair. Really, if I could do that and see no other improvements, I would be ecstatic. However, there are days and times when having really weak hands is very annoying. Here's why:
In other news...
I had another pretty good week below the waist (minds out of the gutter!). It was IVIG week and my physio decided on Monday that I should swing by each day if I wanted to go for 'a quick walk' following my treatments. This is in addition to the 3 sessions we already had booked. I will never turn down a chance to put weight through my legs, so this is great. We will continue this routine whenever I have IVIG and am in the hospital already. I did not have any major breakthroughs but can certainly tell that strength is returning. My legs were tired today and happy to have a bit of a rest.
I did notice that I'm starting to do things without really noticing (if that makes sense). For example, we were watching a movie in bed and I looked down to see that I had crossed my right leg over my left. Now, this is a normal and comfortable position for me but I can't remember the last time I crossed my legs! Once I noticed I had to uncross and cross them again about 5 times before I believed it. I tested this a bit further and found that I could sit in the lotus position. Feeling inspired, I threw caution to the wind and rolled over to try getting on all fours for some cat and dog yoga movements (this may sound really weird to those of you who don't do yoga - trust me, it isn't weird at all). Wouldn't you know, it worked! Not as smoothly or naturally as I would normally find it but not bad at all. I took about 10 nice long breaths while settling into a mini bed yoga practice (with the new Star Wars on Netflix on the TV and Scott and Barney looking at me like I'm a little nutty). I'm not entirely surprised that my flexibility is good. I have always been flexible and am spending even more time stretching these days. Maybe flexibility is all that is needed for what I did tonight, but I think it is a little more than that. The act of lifting and crossing my leg unassisted was certainly not possible even a few weeks ago. I'll mention it at physio on Tuesday.
Have a great weekend!
- It is nearly impossible to open new screw-top bottles and jars. Using a little rubber jar-opening aid helps.
- It is nearly impossible to open a can with a lift tab - pop, beer can, tuna, you name it. I forget this frequently and end up bringing my lunchtime V8 or pop home with me. The best way to deal with this is to ask someone else to do it for me or to deftly use a flat head screwdriver to help. I have managed to open the odd can on my own, but am a little worried about spilling if my attempt goes awry.
- I need to drink using two hands for fear of dropping my beverage. It looks really silly to two-hand a pint glass or coffee mug, but I do it.
- My handwriting is even worse! Who knew that was possible? I am trying to fix this by joining the adult colouring book craze and also by writing and re-writing lists each day.
- Picking things up or putting them down with one hand is dicey. This is similar to #3 and my solution is the same - use two hands, even if it looks a little goofy.
- It is hard to squeeze. Toothpaste, shampoo, lemon slices, clips, childproof caps - all can be tricky. I can squeeze the toothpaste and shampoo using my right hand but not my left. Lemons and limes can either be pre-stabbed/cut for easier squeezing or someone else can lend a hand. My night splints and transfer belt both have plastic clips that require squeezing to release. I can manage the splints with the good ole two-handed approach but am not yet able to undo my transfer belt. I employ a gripper and silly putty to help regain this strength.
- Measuring while holding a spoon or measuring cup is not a good idea. First of all I have to switch my hands (hold the receiving vessel in my left hand, pour with my right). Secondly it is likely that I will drop or spill the measured amount as it becomes heavier. Just not a good idea all around.
- Buttons, hooks and snaps are not friendly. This boils down to dexterity more than strength. My fine motor skills are just not great at the moment. Elastic waist pants (I basically live in yoga pants now and am not sure I will ever give them up), patience, avoidance, and asking for help when all else fails is the way to go here.
- It's harder to use dumbbells for my upper body as my hands and wrists limit the weight I can lift. I spoke with my physio about this and she suggested wrist weights around my forearms. I don't have any yet but am going to try with my ankle weights. This will at least allow me up to 10lb bicep curls and shoulder presses.
- I'm even more dropsy and clumsy than normal. And I'm normally pretty clutsy! For this I need to constantly remind myself of my number one rule - Don't rush. Anything. And never, ever multitask.
In other news...
I had another pretty good week below the waist (minds out of the gutter!). It was IVIG week and my physio decided on Monday that I should swing by each day if I wanted to go for 'a quick walk' following my treatments. This is in addition to the 3 sessions we already had booked. I will never turn down a chance to put weight through my legs, so this is great. We will continue this routine whenever I have IVIG and am in the hospital already. I did not have any major breakthroughs but can certainly tell that strength is returning. My legs were tired today and happy to have a bit of a rest.
I did notice that I'm starting to do things without really noticing (if that makes sense). For example, we were watching a movie in bed and I looked down to see that I had crossed my right leg over my left. Now, this is a normal and comfortable position for me but I can't remember the last time I crossed my legs! Once I noticed I had to uncross and cross them again about 5 times before I believed it. I tested this a bit further and found that I could sit in the lotus position. Feeling inspired, I threw caution to the wind and rolled over to try getting on all fours for some cat and dog yoga movements (this may sound really weird to those of you who don't do yoga - trust me, it isn't weird at all). Wouldn't you know, it worked! Not as smoothly or naturally as I would normally find it but not bad at all. I took about 10 nice long breaths while settling into a mini bed yoga practice (with the new Star Wars on Netflix on the TV and Scott and Barney looking at me like I'm a little nutty). I'm not entirely surprised that my flexibility is good. I have always been flexible and am spending even more time stretching these days. Maybe flexibility is all that is needed for what I did tonight, but I think it is a little more than that. The act of lifting and crossing my leg unassisted was certainly not possible even a few weeks ago. I'll mention it at physio on Tuesday.
Have a great weekend!
Sunday, July 10, 2016
CIDP and Me - It's the Little Things
I'd like to start by clearing something up - I am actually in a really good place right now in terms of my physical recovery and mental state. I know that my past two posts have been rants, but I wrote them more for the comic value of their absurdity than anything. The past month or so has been really good. My energy continues to be high, I'm getting out and about more, and I can hardly keep up with the gains I'm making with my legs. Sure, there are annoyances, but that's life.
Today I will stay away from ranting and bring you up to speed with my ongoing physical recovery. I cannot stress enough what a SLOW and LONG process this is. Who knew how many delicate things need to come together in order for us to do something that most of us do without any thought at all - stand up and walk. It's amazing really. It should be so simple, the way we all just get up and go. But, rest assured, it is not.
I have reached so many milestones over the pat month - simple exercises and movements that I dreamed of being able to do while in rehab. I can now kick my foot out while seated, I can do a straight leg lift on my back and stomach, I can let my knees fall out and bring them back together, I can lie on my back and slide my legs out to the side and back in again. All of these movements were simply not there and now they are. Some are easier than others and some work better with one leg or the other but they are there. This means the nerves are reconnecting and the muscles can start to regrow. It is very exciting and I really hope it continues. It has not yet translated into an independent stand or an easier time trudging around the physiotherapy room with the walker but it will. It has made getting around and in and out of the chair easier, which is a nice bonus. I have regained the use of my hands to carry things as I can now push myself around the house using my feet. A little thing like being able to carry a cup of coffee from the kitchen to the living room can really improve my mood.
All of this is good. Really good. It is also very motivating. I spend so much time working on my exercises and testing my limits that my physiotherapist warned me not to burn myself out. It's hard to keep that in mind but she is right, of course. It's all about finding a balance - giving my body the rest it needs to regain strength and muscle (not to mention nerve connectivity) while making sure each muscle group is worked and stretched daily. I have started breaking my exercises up throughout the day. I do some stretching and simple things when I wake up, a few hours later I'll do a few more exercises, ending the day with stretching and some yoga. It seems to be working. I also picked up a neat bike thing that can be put on a table for an upper body cardio workout (using my hands to push the pedals around) or on the floor for my legs. I'm still pretty awkward with my legs but doing 5-7 min a day. Everything helps. In some ways I'm probably in better shape now than I have been in a long time. I'm certainly more disciplined about working out than I have ever been. I like to think that I will keep it up even after I'm on my feet again. We'll see how it goes.
A big part of the recovery is physiotherapy. I cannot overstate how important this is. I have had a series of great therapists who have all helped me get where I am. My current physiotherapist has only been working with me for 3 weeks and has already reworked my home program twice and changed our schedule from twice a week to three times a week. She helps me test my limits and makes sure I can safely complete an exercise before adding it to my routine. She also knows (better than I) what needs to happen for me to stand up on my own. I arrived at physio last week over the moon because my quads were working enough to do a straight leg lift while lying on my back. She was happy about that, but over the moon when she saw I could do the same on my stomach. Apparently from her perspective, quads are nice but hip flexors are key. In the end we were both happy, so all good. I'm really looking forward to having three sessions this week.
So there it is no rants, no absurd encounters - just a snapshot of where I am. Have a good week everyone!
Today I will stay away from ranting and bring you up to speed with my ongoing physical recovery. I cannot stress enough what a SLOW and LONG process this is. Who knew how many delicate things need to come together in order for us to do something that most of us do without any thought at all - stand up and walk. It's amazing really. It should be so simple, the way we all just get up and go. But, rest assured, it is not.
I have reached so many milestones over the pat month - simple exercises and movements that I dreamed of being able to do while in rehab. I can now kick my foot out while seated, I can do a straight leg lift on my back and stomach, I can let my knees fall out and bring them back together, I can lie on my back and slide my legs out to the side and back in again. All of these movements were simply not there and now they are. Some are easier than others and some work better with one leg or the other but they are there. This means the nerves are reconnecting and the muscles can start to regrow. It is very exciting and I really hope it continues. It has not yet translated into an independent stand or an easier time trudging around the physiotherapy room with the walker but it will. It has made getting around and in and out of the chair easier, which is a nice bonus. I have regained the use of my hands to carry things as I can now push myself around the house using my feet. A little thing like being able to carry a cup of coffee from the kitchen to the living room can really improve my mood.
All of this is good. Really good. It is also very motivating. I spend so much time working on my exercises and testing my limits that my physiotherapist warned me not to burn myself out. It's hard to keep that in mind but she is right, of course. It's all about finding a balance - giving my body the rest it needs to regain strength and muscle (not to mention nerve connectivity) while making sure each muscle group is worked and stretched daily. I have started breaking my exercises up throughout the day. I do some stretching and simple things when I wake up, a few hours later I'll do a few more exercises, ending the day with stretching and some yoga. It seems to be working. I also picked up a neat bike thing that can be put on a table for an upper body cardio workout (using my hands to push the pedals around) or on the floor for my legs. I'm still pretty awkward with my legs but doing 5-7 min a day. Everything helps. In some ways I'm probably in better shape now than I have been in a long time. I'm certainly more disciplined about working out than I have ever been. I like to think that I will keep it up even after I'm on my feet again. We'll see how it goes.
A big part of the recovery is physiotherapy. I cannot overstate how important this is. I have had a series of great therapists who have all helped me get where I am. My current physiotherapist has only been working with me for 3 weeks and has already reworked my home program twice and changed our schedule from twice a week to three times a week. She helps me test my limits and makes sure I can safely complete an exercise before adding it to my routine. She also knows (better than I) what needs to happen for me to stand up on my own. I arrived at physio last week over the moon because my quads were working enough to do a straight leg lift while lying on my back. She was happy about that, but over the moon when she saw I could do the same on my stomach. Apparently from her perspective, quads are nice but hip flexors are key. In the end we were both happy, so all good. I'm really looking forward to having three sessions this week.
So there it is no rants, no absurd encounters - just a snapshot of where I am. Have a good week everyone!
Thursday, July 7, 2016
CIDP and Me - Counseling 101
Settle in while I tell you a little story about this week's misadventure. Before I begin I want to be clear that I think counseling is a valuable and important profession. I do not mean to scare anyone away from it or to imply that my experience is common or to be expected.
The story begins a week or so ago when, following months of procrastination, I decided to call the employee assistance program (EAP) and ask about counseling options. I figure it's probably a good idea given all I've been through this year. The person on the phone was friendly and explained that I could have sessions over the phone or arrange an in-person visit. I was feeling a little uncomfortable about the whole thing and liked the idea of not leaving home for yet another appointment, so opted for the phone. We set up a time and that was that.
My call came at the appointed day and time and I was greeted by 'Joe' (not his real name). He had a very mellow, new agey voice that immediately set off warning bells. But, I made this appointment and answered the call - I was committed. The next set of warning bells went off during his initial questions. His reaction to my age: "I'm surprised by that. You sound younger." Ummm. Ok? I didn't quite know how to take that one. I know it's a compliment when people tell me I look younger, but to sound younger on the phone? Just weird and not a little inappropriate. Joe and I were clearly not at the beginning of a beautiful friendship.
A little further into the introductory questions he asked about my medications. Fair enough question I figured, so I told him.
"What about vitamins and supplements?" He asked.
"Oh right, I'm on vitamin B12 and vitamin D. " I say.
"Oh, well you know you really should take a B complex for better absorption and a multivitamin. You should also look at omega 3."
What the heck!? Did I accidentally call the wrong number? Pretty sure I'm on the phone to assess and chat about my mental health and not my vitamin needs.
"Um, well I take what I take because my doctor prescribed it based on my blood work. I do try to eat well to make sure everything else is covered." Not that this is any of his business.
Next thing, he's telling me that while eating well is good, it is no longer enough because industrial farming has leached all the nutrients from the soil. Wow. Just wow. I did not pick up this bone. Nor did I tell him about my locavore tendencies or any of my many opinions about our food system. Those of you who know me are well aware that I can be pretty darn 'granola' and know I am hardly a big pharma/Monsanto loving gal. But this is not why I called and completely beside the point. I'm pretty sure Joe is not supposed to be countering doctor's orders.
Moving on. Joe and I go through a series of questions that were not particularly useful or insightful. At the end he tells me that I appear to be under stress. No shit! Thanks Joe, I hadn't realized... We get to the part I had been dreading:
"What do you want from this session?"
"Well," I say, "I really don't know. I am new to this and not sure how it works."
He says he'll take the lead and ask some questions of me. Fine, that sounds like a plan. He asks about my condition and I give him the Coles notes version. When I mentioned demylenated nerves he got all excited and started on about vitamins again! I kid you not. He told me to increase my vitamin D and started listing all kinds of other things I could take to help my nerves heal. Like this has been my problem. I just need more vitamins and I'll be out of this chair and no longer need biweekly infusions. Joe, where have you been my whole life?
To recap, Joe has now insinuated that I am immature, contradicted my doctor's treatment plan, and belittled the life-changing chronic disease that prompted me to call in the first place. Fantastic, so far counseling is grand.
We now move from the vitamin aisle into the world of self help as he asks "How do you relax?"
For some reason I am still trying to get something out of the session and keep doing my best to answer seriously. I told him I had a number of hobbies and that I do yoga every day. He got all excited at this. Though in a way I may have stolen a bit of his thunder because he couldn't make yoga his idea.
"How about affirmations?" He asked.
Silence. I had no response to that one.
"Your silence answers that. You should try adding affirmations to your yoga practice." Oh boy, here we go... I understand that affirmations help some people and can be a comfort. But they just don't do it for me. They make me think of that Friends episode where Chandler tries to stop smoking by listening to a tape that tells him, "you are a strong, confident woman...". But I digress.
He started rambling off a few of his favorite sayings. They were lame and trite and belong on a photo of a kitten or a sunset. At one point he said "When we think about our limits, we set our limits." By now all I could think of was a Family Guy episode where Brian (the dog) wrote a best selling self help book called 'Wish it. Want it. Do it.' I also got the sense that he was telling me I could affirm myself back to health. He didn't ever actually ask if I had a positive outlook on things or really ask how I was coping at all, now that I think about it.
By this part of the conversation I was totally checked out. He had moved on to rattling off the names of books and authors and the five stages of grief. Scott got home during the call and stuck a note under my nose telling me he could tell it was not going well based on my fairly standardized reply of "Um, ok". He quickly and quietly left to take the dog for a walk - smart man.
Our forty-five minutes eventually ran out and I told him I would think about making another appointment. He asked how I found the session and I lied and said fine. We hung up and I poured myself a large glass of wine while my mind replayed the insanity that just went on. I realized that I never asked Joe his credentials. I am curious about that now.
Scott got back and I told him what happened. We laughed. A lot. What else could we do? The following morning I called EAP and filed a complaint. There were just way too many inappropriate things in that call. I focused on the vitamin/medical advice part as that was well beyond the line. The person I spoke with was shocked and very thankful that I said something. I'm going to try an in-person session next time. Hopefully it will be more professional and a whole lot less creepy.
Until next time, namaste and be excellent to each other. (Words of wisdom from Bill and Ted).
Friday, July 1, 2016
CIDP and Me - Incompetents Anonymous
I originally started writing a very different post for this week but have decided to rant instead. Don't get me wrong, overall I had a pretty good week and continue to feel energetic and stronger. However, sometimes the little annoyances just add up enough to change a mood and, therefore, a blog post.
The title of this blog is a reference to a hilarious and poignant blog written by my friend, Dr. Strangejob. It has nothing to do with CIDP or healthcare, but check it out for a laugh - http://www.drstrangejob.com/
So my rant... Do you ever feel like the world is conspiring against your positive attitude and good mood? I try really hard to stay positive and to let the little things roll off of me. Possibly a little too hard. I find it much easier to go with the flow and let go of anger and annoyance as soon as possible. In my experience, anger just leads to stress and the ruination of my day rather than the target's. However, even my zen-like patience (ha!) has limits.
I have written before about our struggles and frustrations with the healthcare system. It seems like nothing ever goes smoothly or as expected. To the point where I expect a problem or issue with pretty much every encounter I have. I haven't written about everything here, nor will I. Some dealings are best left without a written record and I don't want anything to come back and bite me later on.
I will continue to rant about some things though. Today's target - the pharmacy. Now, I have not studied pharmacology, nor have I any idea of the full scope of the profession or day to day job duties. However, I do know that counting pills and figuring out proper dosages based on prescriptions is a pretty important part of it. I also know that Calculus is required for admission into Pharmacy programs, so figuring out a simple equation to determine the number of pills should not be a problem. That said, my Prednisone prescription is proving to challenge the minds of our best and brightest pill counters. I'm on a weaning dose, which means that every week my dose reduces by half a pill. I also need A LOT of pills because they only come in 50mg pills or 5mg ones. The pharmacy messed up the count from the beginning and is still sorting it out. Instead of giving me enough for 2 weeks to start they gave me a little more than a week. When we returned to refill they said they gave us enough for a month, but really only provided 17 days worth. I tried to use the automatic service to renew last night and could not as it said I was too early. I held for a pharmacist and spent half an hour on the phone while she, apparently, sorted it all out once and for all. Great - we were told to pick them up anytime today. Scott went to the pharmacy in a good mood and planned on a quick and painless errand. Nay nay! He arrived to find that they had not yet counted the pills, so it was not ready. They then came to explain that the dose problem was still wrong and that they would have to figure it all out again! Forty-five minutes later, Scott was finally ready to leave with what is hopefully a month's worth of pills. They waived the dispensing fee, but really this does not make up for anything.
This is not the first issue we've had with them. There was the time they changed my brand of another pill and did not tell us. We were concerned as the pills looked different and were worried they gave the wrong thing. In that instance they also neglected to tell us that they did not have enough pills in stock to fill the prescription (though they charged us for it), which led to more confusion when we got home and an extra trip to town to pick up the rest a few days later. I know we can change pharmacies, and we probably will. It will be a pain to move everything though and just another dumb hassle. It is really annoying as these are simple things and should not happen. I am a pretty forgiving person and am fine to let a mistake happen now and again. But it gets to be too much. I start wondering if I am crazy and overreacting because, like the Dyson guy says, "I just want things to work properly". I'm learning that this is an unrealistic assumption, especially in the world of healthcare where incompetency seems to keep creeping in.
As I mentioned, this is not the only instance like this that we ran into this week, but I think it gives an idea of the little frustrations we seem destined to run into on a regular basis. I will say that despite all of this, I have also had many good encounters and experiences. This rant by no means applies to everyone, as I would be in WAY worse shape without the fantastic care and support I receive. I do feel better for writing this out and am ready to pour myself a nice cold glass of white wine and sit on the ramp with my book.
Happy Canada Day to all!
The title of this blog is a reference to a hilarious and poignant blog written by my friend, Dr. Strangejob. It has nothing to do with CIDP or healthcare, but check it out for a laugh - http://www.drstrangejob.com/
So my rant... Do you ever feel like the world is conspiring against your positive attitude and good mood? I try really hard to stay positive and to let the little things roll off of me. Possibly a little too hard. I find it much easier to go with the flow and let go of anger and annoyance as soon as possible. In my experience, anger just leads to stress and the ruination of my day rather than the target's. However, even my zen-like patience (ha!) has limits.
I have written before about our struggles and frustrations with the healthcare system. It seems like nothing ever goes smoothly or as expected. To the point where I expect a problem or issue with pretty much every encounter I have. I haven't written about everything here, nor will I. Some dealings are best left without a written record and I don't want anything to come back and bite me later on.
I will continue to rant about some things though. Today's target - the pharmacy. Now, I have not studied pharmacology, nor have I any idea of the full scope of the profession or day to day job duties. However, I do know that counting pills and figuring out proper dosages based on prescriptions is a pretty important part of it. I also know that Calculus is required for admission into Pharmacy programs, so figuring out a simple equation to determine the number of pills should not be a problem. That said, my Prednisone prescription is proving to challenge the minds of our best and brightest pill counters. I'm on a weaning dose, which means that every week my dose reduces by half a pill. I also need A LOT of pills because they only come in 50mg pills or 5mg ones. The pharmacy messed up the count from the beginning and is still sorting it out. Instead of giving me enough for 2 weeks to start they gave me a little more than a week. When we returned to refill they said they gave us enough for a month, but really only provided 17 days worth. I tried to use the automatic service to renew last night and could not as it said I was too early. I held for a pharmacist and spent half an hour on the phone while she, apparently, sorted it all out once and for all. Great - we were told to pick them up anytime today. Scott went to the pharmacy in a good mood and planned on a quick and painless errand. Nay nay! He arrived to find that they had not yet counted the pills, so it was not ready. They then came to explain that the dose problem was still wrong and that they would have to figure it all out again! Forty-five minutes later, Scott was finally ready to leave with what is hopefully a month's worth of pills. They waived the dispensing fee, but really this does not make up for anything.
This is not the first issue we've had with them. There was the time they changed my brand of another pill and did not tell us. We were concerned as the pills looked different and were worried they gave the wrong thing. In that instance they also neglected to tell us that they did not have enough pills in stock to fill the prescription (though they charged us for it), which led to more confusion when we got home and an extra trip to town to pick up the rest a few days later. I know we can change pharmacies, and we probably will. It will be a pain to move everything though and just another dumb hassle. It is really annoying as these are simple things and should not happen. I am a pretty forgiving person and am fine to let a mistake happen now and again. But it gets to be too much. I start wondering if I am crazy and overreacting because, like the Dyson guy says, "I just want things to work properly". I'm learning that this is an unrealistic assumption, especially in the world of healthcare where incompetency seems to keep creeping in.
As I mentioned, this is not the only instance like this that we ran into this week, but I think it gives an idea of the little frustrations we seem destined to run into on a regular basis. I will say that despite all of this, I have also had many good encounters and experiences. This rant by no means applies to everyone, as I would be in WAY worse shape without the fantastic care and support I receive. I do feel better for writing this out and am ready to pour myself a nice cold glass of white wine and sit on the ramp with my book.
Happy Canada Day to all!
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