CIDP and Me - Let It Snow

One of the fun things about living in Cape Breton is that a few days of 'scattered flurries' can often lead to 20+cm of snow. OK, fun in December, I have a different word for it in November, April or May. It's nice to sit inside and watch the light, fluffy flakes fall on the lawn and the evergreens in our front yard - kind of feels like being inside a snow globe. Unfortunately, said pretty, fluffy snow is a bit of a problem when one decides to leave the cozy comfort of home. This brings us to Saturday morning and the beginning of this week's tale.

We had great plans for Saturday - drop off the box of presents to send to my in-laws in Vancouver, grocery shopping, laundry, and housecleaning. Not the most exciting plans, but I'm always happy to go out and feel like a productive member of society. Things started off well - we slept in a bit then had a relaxing breakfast of eggs and coffee. We moved to the living room to prepare the box for shipping. Scott bent over to tape said box and there was a 'snap' followed by an exclamation of "#@!* my back!". Scott fell back in to the couch, all colour drained from his face, and tried to find a comfortable position. Crap. This has happened before and is not good. He sat for a moment while I brought over my walker to help him up. He got up, took some back pills and made it to the recliner. Our plans for the day were done. Poor guy.

I switched in to care-giver mode and proceeded to do all I could to take care of Scott. I fetched water, made lunch and dinner, cleaned up a bit, brought him blankets, etc. It really sucks that his back went out and I hate that he is in pain, but I must admit it felt really good to be the one looking after someone for a change. I may not write about it much but I would be totally lost without Scott. He has done so much for me throughout this 'adventure' (and before). When I think back on how much I relied on him for even the basic things... Heck, he had to help me shower and help me transfer to the commode and wheel me over the toilet (tmi?) for months! Not to mention cooking, cleaning, driving and walking the dog. He has been through as much (maybe more) as I have through this and has proven to be the best husband and friend I could ask for.

Back to my tale. We spent Saturday inside, watching as the 'flurries' continued to accumulate outside. Thankfully Scott was able to maneuver the stairs to let the dog out when needed. We discovered that it is very useful to have a house full of horcruxes, err, mobility aids. Throughout the day Scott made use of my walker, cane, grabber, and grab bar in the bathroom. I also used all but the cane, though that is hardly unusual. As the day progressed Scott said that while he was in extreme pain, it was not as bad as a previous time and that he would likely be OK in a day or 2.

We woke up Sunday and Scott's back was still evil, though possibly a little better. He decided that he would probably be fine to go out for dinner that evening (this had been planned for weeks). Great. Only a few details to sort out: the ramp needed shoveling, my chair would need to be lifted into the car, and the dog was starting to go shack wacky from not having a proper walk. Well, ever the problem solver, I sprung into action. "I could probably shovel the ramp." I declared. "Are you sure?" replied a skeptical and protective Scott. "Sure. At least let me try." "OK." With that, it was decided. I bundled myself up and headed out the front door.

Turns out shoveling is totally doable! The snow was light and fluffy, which was definitely in my favour. I cleared the ramp as best I could. Not the job I would normally be proud of, but given the circumstances, I was thrilled. It felt so good to be outside doing something physical. I made it down the ramp and continued around the car. I got our brush out of the back seat and cleared the car as much as I could too. It felt great.

At one point my neighbour (a friendly and nosy 'good ole  boy') came over. "Don't tell me he sent you out to shovel?" he said. Now, this is a guy who gives Scott a hard time if I bring out garbage or mow the lawn, so I was expecting this reaction. I explained the situation and he asked if we wanted him to plow our driveway again this year. I said yes please! We had a little more small talk and I continued my snow clearing magic.

I am grateful that my neighbour has a tractor and is happy to clear our driveway each year at a very reasonable rate. Today I am grateful that he did so at the same time as I was clearing the car. Despite my stubborn bravado I was finding it difficult to get back on the ramp from the gravel. This is a tricky spot at the best of times as any of my 'drivers' will tell you. He saw my distress and came over to help. I got him to pop up my front and get me on the ramp, then sent him back to his tractor. I pulled myself back up the ramp and into the house, where I melted on the front mat for a few minutes. Adrenaline was running high but I knew I probably pushed things a little. Totally worth it though.

As for the other  problems - Scott figures he'll be able to manage my chair this evening and our most fantastic friend is on her way over to take Barney out for a walk. All is well.

As a reward for making it this far in my post... here is an action shot of shovelpalooza 2016.

CIDP And Me - Abs of Flab

This may come as a shock to you (it certainly did to me) but it would appear that I do not have abs of steel. I know, how can that be? I was sure that I had a lovely six-pack underneath my 'insulation'. Alas, it is not so. At least not according to my new physiotherapist. She has determined that my core is weak and needs to be toughened up stat. This will help with my standing and is required if I ever hope to stand unassisted. I now spend part of each evening sitting on an inflated disk with proper posture and one or both feet off the ground. At least no one is trying to balance a book on my head while I do it. It's actually kind of nice to be thinking of something other than my legs.

Changing physiotherapists has been interesting. I'm so used to working with people who know me and are aware of the progress I've made that I sometimes forget how far I have to go. My new therapist doesn't know me and is assessing me for the first time. She is not so much interested in celebrating how far I've come as figuring out how to get me where I want to be (not that my last physio wasn't working toward that too - I cannot say enough good things about her and the work she did with me). It's a little humbling in a way. We have had a good first week and my assessment went well. My numbers in the strength tests continue to improve, which is great. She has completely overhauled my home program, so that I have fewer exercises to do with a focus on key muscle groups. My core and glutes in particular. That's right, I don't have buns of steel either but that is no surprise.

In other news winter is creeping up on us (I refuse to use the Game of Thrones line here) and I'm not impressed. I quietly hibernated last winter in the hospital and rehab but will not do the same this year! It is a pain and messy and cold but I refuse to be a shut-in. I'm entertaining ideas for wheelchair winterization, so fire away.

Finally, I seem to have a better handle on fatigue this week. My secret? An 8:30 bedtime. Yup, I'm living the life of a five-year old. Naps included. This is all good when I have no plans... I did manage to stay out until 9:45 last night and seem to be fine so far today, so that's a good thing:)

ciao ciao.

CIDP and Me - Goodbye/Hello

Time for ye olde update around here... Things continue along as usual with a few changes thrown in to keep me on my (figurative) toes. I'm still really struggling with fatigue and trying to find a balance between rest and activity. No one is overly concerned about it - they just tell me to take it easy when I need to and to stop trying to do everything at once (you'd think they would know me better by now;). So I am trying to be more aware of my limits and am trying to pack a little less into each day.

That said, I have made some good progress over the past few weeks that I am happy to share here. I am cleared to go for short walks at home. I still have not braved the mountains that span my doorways but am getting good at walking the length of the living room and bedroom. I'm pretty sure I could manage the thresholds, just need to try it once...

I have also started doing some exercises while standing at the counter. I hold the counter for balance and march in place or kick my leg out to the side. I am also trying to improve my balance by holding on with only 1 hand then, for the tiniest millisecond, no hands. No hands really doesn't work yet. But it will.

Finally, last week I managed to climb 2 'stairs' in the parallel bars at physio! This is pretty awesome as I was really not sure it would work out. So, as long as every staircase I encounter has solid rails on both sides (3 feet or so apart), I should be OK. Oh yes, there can also only be 2 steps... OK, I'm not ready for the real world of stairs, but it's a start.

There you have it - Stamina, Balance, Stairs - the three pillars of my  recovery program at the moment.

I do have some sad news. I had to say goodbye to my most fantastic physiotherapist last week. She was covering a maternity leave and the regular person returned this week. I made so much progress with her and enjoyed working with her so much that this is proving to be a difficult transition for me. I met my new physiotherapist today and she seems very nice and competent. We are getting to know each other and will do a full assessment on Thursday before coming up with a plan. I'm sure it will be fine and that I will continue to improve. Who knows, a new perspective may lead to new improvements:)

Here is a pic of me at the counter. I know, I never post pics and really haven't taken too many over the past year. This is not me at my most flattering, but hey, why not, it's still me (and I love my nerdy Dracula t-shirt). I call this "Look Ma, One Hand."

Ciao ciao.

CIDP and Me - Kaboom

There is a silent, ticking time bomb living inside me that I forget about from time to time. If I behave myself and am careful, I can avoid setting it off. However, if I forget and am careless - KABOOM! What is this silent, stealthy rogue? Fatigue. Chronic BS fatigue. The kind of fatigue that smacks you like a bus out of the blue (or perhaps when you should  know better). The kind of fatigue that no nap or good sleep can touch. The kind of fatigue that takes its sweet  time leaving and settles in like an unwanted house guest - draining you of resources and never leaving you alone. It will eventually move on, but it will do so on its own terms.

I stumbled on this IED this week because I did 'too much'. Apparently. 18 months ago I would have considered my week gloriously relaxing and quiet. Half days at 'the office' (um, hospital), a couple lunches, some shopping, a retirement party and choir. Pretty good. Pretty laid back. HA! Nay nay says the silent assassin inside.

The trouble began on Tuesday. I had IVIG and physio in the morning then went out for lunch. We took our time with it as I had several hours to kill before attending a retirement party. At 2:30 I was dropped off at Scott's office and we went and hung out with a friend until the party started at 3:30. At this point I had already been up and out of the house for longer than I had been in a very long time. I was feeling pretty good though, so off we went. It was great to see everyone and get caught up a bit. I had a good time and we stayed an hour or so. By the end I was wiped - stick a fork in me, I'm done - wiped. We drove home and I was a useless human being for the rest of the evening. By 8:30 Barney and I were passed out on the couch. At 9 Scott sent me to bed.

I woke up feeling reasonably perky on Wed and went off to IVIG bright and early. I had my usual  Wednesday lunch date set up along with plans to hit the mall and find me some new pants. This seemed like a reasonable and non-taxing thing to do. It turns out that trying on pants in a change room while in a wheelchair is exhausting. Who knew? Apparently it is also tiring to wheel oneself around the full length of the mall (my friend was more than willing to push me, but I am a stubborn person). By the end I decided to buy first, try on later and return if necessary. I got home at 4:30, marking the second longest day in recorded memory. I was not quite as tired on Wednesday night. I was even able to make dinner! But I did crash early and hard.

Thursday was not quite as insane. I had the afternoon off between IVIG/physio and choir and I was a good girl and had a nap. Even so, my little bomb went off about an hour into rehearsal. I was mouthing my words and going through the motions for the second half and have a vague memory of the ride home. Of course, when I got home I could not fall asleep. Yay.

Friday marked the end. I had no plans after my appointments. We came home and pretty much  moved into the recliners. I wasn't able to nap for some reason but just sitting still was very helpful. I went to bed at 9:30 and slept for 13 hours. I feel much more 'normal' today.

The lesson - I am not up to full days of events. Even if those events are social and laid back. My normal practice of no more than one extra-curricular activity a day is clearly the way to go. It's frustrating because when I am rested, I feel like I should be able to do more. But it just isn't worth it.

OK, enough about the fatigue, I have a few other things to share this week.

Firstly, I made some good progress at physio this week. I am now able to do two laps of the room using the walker without assistance and without the safety blanket of my chair following me. I was previously doing two laps with a break in between each and a physiotherapist holding my belt. This is good. Our current focus is to build up stamina, so I think I will get to know that loop very well. I have also been cleared to use the walker for short distances at home.

Secondly, I would like to share a quick observation/lesson from cooking in a wheelchair.  Watch out for spattering oil. I was cooking chicken thighs on Wednesday night and discovered that my head was level with the sputtering oil from the pan. Luckily I was far enough away to notice and prepare myself and escaped unscathed, but it was close. For once I was thankful to be wearing glasses. So while I am thrilled to be able to use the burners, I think I will stick to grilled cheese and leave any bacon cooking to Scott.

Thirdly, a funny tale about trucks. Everyone loves having a friend with a truck. They are so handy to have. However, when you are in a wheelchair and your good friend decides to buy an F150, it is not so good. Of course, I am thrilled for my friend and glad that she finally got her truck (she has wanted one forever). But for me, it is a challenge. Then again, I like challenges. Let me explain...

I get in and out of cars using what is known as a transfer board. This is a 2 foot long board that I place from the seat of my chair over to the car seat and then slide my butt across. Now, when I pulled up to the F150 it was quickly apparent that this system would not work. The distance between my chair and the passenger seat was more than 2 feet! It would also be impossible to use my walker to stand and transfer as the seat is way higher from the ground than my butt and I am certainly not up to stairs. So what to do?

Conveniently my friend is very strong and works out a lot. I popped on my handy transfer belt (a safety belt with all kinds of loops in it to help people help me stay up) and we came up with a plan. I put my left leg up inside the truck and my right on the runner. On the count of three my friend hoisted me up so that I could grab the 'oh shit' handle. We then combined power to 'monkey' me into the seat. Phew. It was actually not that bad. It is even easier if I start off on a curb, which gives 3 or 4 inches of extra height.

The next challenge is getting out of the truck. For this my friend places my chair perpendicular to the truck with the 'feet' removed. I scoot up to grab the handle and pivot myself around. I then 'plop' myself into the chair with my friend guiding me by holding my belt. Easy peasy, lemon squeezy!

I think I'll have to write a guide to temporary life in a wheelchair when this is over:)

Thanks for reading and have a great week!

CIDP and Me - Shack Wacky

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...

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...

CIDP and Me - Sometimes There Are Bumps Along The Road

Overall it has been a pretty good start to the fall. I turned 40 (eek!) a couple weeks ago and had a good time celebrating with friends and co-workers. Forty is pretty surreal to me as I barely feel like an adult most days. But, I'll take it. In terms of my health and recovery, I continue to stand up every day (either at home or at physio) and my legs are still gaining strength, mobility and muscle mass. All of these things are fantastic and I do not want you to think that I do not appreciate how far I have come. I really have and it's great and encouraging.

However, it is not all good - as the title of this post implies, there are bumps. I'll start at the bottom - my feet. Oh how I loathe my feet. They are a numb/tingly/achy/burny/freezing constant reminder that all is not right in this temple of my body. As my nerves reconnect, my feet regain feeling and this is not always a good thing.  It took me about a year to understand what is meant by 'neuropathic pain' and to admit that I experience it. It is very different from 'regular pain' and no one really describes it well, at least not that I can find. I have been trying to write down what I am going through in detail and may post that eventually. It comes across as a little too scary I think, so I'm holding off for now. That said, I am not wallowing in silence - I asked my doctor about meds to help today and am going to try Lyrica for a few weeks and see how it goes. I hate to add more to my daily  chemical cocktail, but I think it is necessary.

Moving up, we come to my stomach. This week I realised that my stomach can no longer handle Ibuprofen. Sigh. I like Ibuprofen and find it much more effective than Acetaminophen for most things. However, if I take more than a couple a week I suffer with stomach pain and nausea. The absolute last thing I want is to end up with another stomach ulcer, so I have decided to give up on Ibuprofen and look for other ways to soothe my achy muscles (heating pads, stretching and wine).

Continuing along, we come to my hands. My hands are favoured about as much as my feet these days. As you know (if you've been following my blog) my hands started becoming weak several months ago. To curb this I was placed on a weaning dose of Prednisone, which seemed to be helping. I have been seeing slow but steady improvement in strength and was feeling pretty good about it.. Heck, I can even open a can of pop or beer all by myself now. So imagine my distress a week ago when, in the middle of choir practice, I noticed that my right index finger was becoming fuzzy (the technical term) and more and more paralysed. I tried to convince myself that it was tired and a result of over-use as I had spent a fair bit of time on my computer that week. I rested it over the weekend and promised to call my neurologist if it did not improve. Well, it did improve a little but did not go away and by Tuesday my left index finger and thumbs had joined in the fun. Sigh. I made the call and am glad I did. He thinks it is likely a carpel tunnel thing as there is a lot of pressure on the few connected nerves in my wrists, but does not want to risk anything, so suggested a two-fold solution. First, I am to up my Prednisone dose and wean bi-weekly instead of weekly. I kind of expected this and it is a lesser of two evils, much as I hate the idea of longer term steroids. Second, he wrote me a prescription for carpel tunnel splints that I am to wear whenever I am not doing anything. Scott has decided my new nickname is 'Splinty' as I already sleep with splints on  my feet. Maybe one day I can add a mouth guard and neck brace into the mix to complete the nighttime bondage...

In more positive news, physio continues to be great and I am still making improvements. I am sitting down with much more control, which pleases everyone. For the longest time I sat down like those old toys with elastic joints and a button on the bottom - you pressed the button and they collapsed. Now I can slowly lower myself in a controlled motion. I do still rely on my arms, of course. As I mentioned at the outset, I am standing both at home and physio. At home we set the walker up against the counter (right in front of the kitchen sink, which I believe is a not so subtle reminder of the household duties I no longer partake in) and I stand and sit 5-8 times in a row. It feels so good to be on my feet and it gets easier each day. I am also now able to use the walker to transfer from my chair to the bed or recliner. This is more involved than what I have been doing so I don't do it every time, but it is a step in the right direction. The next progression will be to use the walker to walk a bit at home. In physio, we are working on building endurance with the walker and balance in the parallel bars.

So there you have it - you take the good, you take the bad...

CIDP and Me - Up and At Them

This was a pretty big week for me, as those of you on my Facebook already know. I achieved a long elusive milestone in physio - standing up unassisted. I'm going to clarify what this means a little, as there has been some confusion. It's true, I have been standing and walking with a walker for months - it's how I'm getting up that has changed. Until this week I needed assistance from the physiotherapist (pulling me up using a belt and/or blocking my knees) along with the stability of a bar or walker to get up. Now I only need the stability offered by the bar or walker - the rest is done with  my legs and arms. It is a huge step (no pun intended) and really marks a new chapter in  my recovery.

Here is how it all played out... My therapist got back from vacation this week and was really impressed with how I walked in the parallel bars on Tuesday. I was straighter, my motions were more fluid, and my feet were facing forward the whole time. I knew that we were probably going to move things to the next level, whatever that would be. When I got there on Wednesday she said she wanted to see how far I could get up on my own. I was parked between the bars and had one hand on my chair arm and the other on a bar with my feet firmly planted on the ground. I gave a push with my arms and legs and, low and behold, I popped up to standing! I believe my reaction was "holy shit, I just did that didn't I?". She smiled and said that I did indeed. We both agreed that wine was in order.

Having achieved this feat of strength once, she decided it was time to take this party trick on the road. She suggested that Scott should come in to be cleared on spotting me so that I could stand at home using my walker. This was to be a delicate suggestion - recall that the last time I stood in a walker at home I broke my ankle and landed in hospital for months. There is an understandable nervousness about the whole situation. However, it is what it is and the more time I can spend on my feet, the better.

When I got home and told Scott what happened, he was more excited than I was. We called some family and sent some emails. I explained about the home spotting and he agreed to come and watch the following day but made no promises about being ready to do it at home. We decided to hold off on the official celebration until the weekend as it was an IVIG week and I don't like to drink while that is going on. We did invite a couple friends over to join us on Friday night.

Scott met me at physio on Thursday and watched as I repeated my feat (in the walker this time) and then walked the full loop without a break. Not only did I stand up again, I was able to go further than I had before and was putting much less weight through my arms and shoulders. Everyone was thrilled and Scott gave my physio a big hug. On the way out he did a little jump and clicked his heels, making everyone one cackle. He didn't get any training on Thursday but agreed to come back again Friday for it, which he did. On Friday we set up a walker against the physio bed so that it would not move and I practised standing and sitting with Scott standing by. I did this 3 or 4 times with no issue. We then moved over to the bars and I added yet another new trick to my repertoire - I walked the length of the bars with only one hand on a bar! I'm pretty excited about this too.

I will be trying out standing at home this weekend and am confident it will go well. I know the road is still long and slow, but it is good to reach this milestone. My next goal is to stand up using only the arms on the wheelchair for support... I'm not giving a timeline on this though.

We celebrated last night with a couple of friends and a bottle of Barolo wine that Scott got in Italy. SOOOO tasty. We have one bottle left and will save that for another milestone (maybe when I'm back to walking with a cane).

In other news, I went back to choir this week. It is the first 'normal' activity that I am adding back into my routine and it went really well. I was worried that my voice wouldn't be there and that the rehearsal would wipe me out too much. I was a little rusty at first but my voice is fine and my range is still there (or there enough). I was certainly tired by the end but it did not kill me. It was really nice to see everyone and to distract myself from myself for awhile. I'm glad I decided to go back.

So that was my week.

Ciao for now!

Accessible? I Think Not

I've been on a bit of a vacation as my physiotherapist is on vacation and I had a whole week with no medical appointments. It has been nice and relaxing and a welcome change of routine. That said, I really don't have any updates to offer about my progress or any wacky medical stories to share. However, I do have a bit of a rant in me about the lack of really 'accessible' places around here. I am lucky to have Scott and friends who are willing to drive me around and help me get over door jams and the like, so I can manage pretty well. I would hate to be alone and in a wheelchair in this area - I would be pretty much forced to stay home. Even the hospital barely passes in some respects. But I get ahead of myself... I'll break it down into categories.

Parking

There are A LOT of people around with handi parking passes and not nearly enough designated spaces to handle all of us. I do not want to judge people with the pass and am fully aware that there are 'invisible illnesses' and many conditions for which a pass is warranted. However, I know that a few abuse the privilege and that ticks me off. So sometimes we are forced to park in 'regular' spots, it is what it is.

My main parking beef is specific to the Sobeys parking lot in North Sydney. The designated spots there are huge, which should be a good thing. The problem is that they are actually too big, so people routinely double park in them (with passes). When this happens there is no way to fit my wheelchair in beside the car, which is pretty much the point of having bigger spaces to begin with. It makes me crazy with a sort of parking lot rage and I am oh so tempted to rub my chair all along the side of the offending vehicle. I don't though, that would be wrong... Instead, I patiently wait for Scott to back up into the lane so that I can get back in the car.

The way I see it there are three issues here. First, people do not pay attention to the rules. Second, the spaces are too big and not really marked clearly - it would be better to have smaller spots and a spacer of diagonal painted lines between spots to leave room for wheelchairs (the hospital does this with success). Third, there need to be more designated spaces as there seem to be so many people needing them. One of these days I'm going to write Sobeys about this. The Walmart at the other side of the mall does a much better job of marking spaces - I just hate Walmart with all of my being so can't start grocery shopping there...

Restaurants and Store Entries

Lots of places have ramps or are level with the sidewalk, which is great. I believe it is a rule that any new business must be nominally accessible and most are. But really, they aren't. They have ramps, yes, but then there is a lip of 2-4 inches to get over the door jam. If I am with someone it is generally easy enough for them to pop a wheelie and get me over the lip. However, I don't think I could do it alone and really wonder about people in power chairs or elderly people who may not have someone fit enough to push the chair up and over.

We were at the Travelodge hotel this week (Scott was playing a show there) and it had a big sign by the door saying they were 'accessible'. First of all, there was no avoiding going over a speed bump when wheeling over from the parking lot (I did manage this on my own but it required a good push and upper body burn). Next the concrete ramp to the door was pretty steep and did not level off before the door so pushing the button and not rolling backward at the same time was tricky. Finally, there was a big ole lip of 3-4 inches to get in the door and I could not manage this on my own. Oh yes, the button also needed a second push as by the time I maneuvered from the button to the door it was already starting to close. Once inside everything was fine.

Inside the Store

I'm not a big shopper and never have been. CIDP has been a wonderful excuse to expand my reliance on online shopping for most things. But, sometimes I need to go shopping - usually for groceries. Grocery stores are pretty accessible - they are designed for push carts after all. So that is great. I can wheel myself around with no issue. I do have to be careful as people are not always the most aware of me and there always seems to be a near miss collision at some stage of the trip.

My biggest complaint is that I can't reach many items. I will try to be helpful and, say go get the cereal, only to find that it is out of reach. I'm not sure how to fix this or if it is even realistic to ask for it to be fixed, but it's frustrating. People are usually nice enough to grab things for me but it sucks. The other frustration can occur at the checkout. Thankfully it has only been an issue at one store - the Sobeys on Prince Street (that's right, the fancy new one). The problem here is that the debit/credit machine is fixed in place and is too high for me to actually use. I had to give a friend of mine my pin and ask her to put the payment through for me! Crazy, right? I certainly would not want to be stuck there alone and have to give the cashier my pin!

Bathrooms

I try really hard to avoid public washrooms and, for the most part, am successful. However, on occasion they are necessary, especially at the hospital. One would think that of all places, the hospital would be fully accessible. But nay nay. I have had to use a few washrooms there and they are not all created equal. Sure, they are all big and have a bar to help with the transfer. Some have a lower sink, mirror and towel dispenser, some do not. In some cases the bar is too far away from the toilet to be of any use to those of us under six feet tall. It is frustrating because it should be standard. In a building designed for sick and infirm people I have found two acceptable washrooms (and I have to stretch to reach the towels in one of them).

Sidewalks

This is specific to downtown Sydney. The sidewalks are a deathtrap. They are cracked and uneven and a total mess. Wheeling from one store to another is a bit of an extreme sport. It would probably be easier to go on the road (if it weren't for the pesky traffic). There are days where I think I could kill time after an appointment by wheeling myself a few blocks to get a coffee, but I fear it would not work. Not to mention the tricky part of getting over the door jam and into a store. So I am forced to rely on people to help me get around.

So there you have it - a little rant about the trials and tribulations of getting around town in a wheelchair. There are some places that are great and really easy to get around - I just wish there were more of them. I also wish that people would think a little more about what accessible actually means. It is not about meeting a minimum code requirement, it is about providing functional access for people with limited mobility. The whole point is to enable everyone to lead independent lives. If builders and designers took a few minutes to actually think about how an entrance, parking space, bathroom, or whatever, would be used by someone in a wheelchair (or even better, in a power chair), I think that our spaces would be in much better shape.

That's it for now. I hope everyone is enjoying the long weekend:)

CIDP and Me - A Year After Diagnosis

I'm sorry I missed a few weeks - I'm afraid life has simply not been that exciting, or at least blogworthy. Course, that is not really a bad thing - no news is good news as they say. I was scrolling through my daily symptoms/recovery journal the other day and noticed that this week marks one year since I first heard the words Chronic Inflammatory Demyelinating Polyneuropathy. This was delivered as a probable diagnosis at the end of my first appointment and EMG with my neurologist on August 17, 2015. The diagnosis was confirmed a few days later following a lovely spinal tap (I do not care to repeat that experience anytime soon) and my new life of IVIG and endless medical and physiotherapy appointments was launched.

At that time I was using a cane, wearing AFOs and deteriorating quickly. I had a lot of neuropathic pain in my feet and legs and was having trouble sleeping. I had no idea what was going on and was getting pretty worried. I was still working but had followed doctor's orders to cut back and was down to 4 hours a day. I was thrilled to have a diagnosis and treatment plan but really had no concept of what I was in for. The neurologist tried to warn us that it would be a long road and could take a year to fully understand the extent of the neuropathy, but I thought he was just being overly cautious. I went home and Dr. Googled away, which made me both scared and hopeful. I saw lovely statistics like 80% of people recover (whatever that means) and the possibility of long term remission and figured, being young and otherwise healthy, that I would easily fall into the best case scenario. Clearly, I have not and the past year has been different than I would have ever imagined. However, I'm still here fighting away and making some great gains. I am certainly a little less naive than I was a year ago. I am also far better acquainted with the healthcare system and the hospital than I ever imagined. I could go on and on but you've read my blog - you know what the deal is. I'll move on now to a quick update of the past few weeks (blogworthy or no).

I had my 3-month check up with my neurologist today and it went really well. He said that the improvements in my leg strength and mobility are 'very promising.' That is as optimistic as I have ever heard him, so I am very pleased. He wants to continue everything as is for now and will reassess in 3 months. Meanwhile I am to continue focusing on standing and building up my quads - I'm on it doc. He did not electrocute or probe me in any way, which was another positive of the appointment. The only pain was that he was an hour and a half late, so I lost my window for lunch before physio. But, whatcha gonna do?

Physio continues to be beneficial and fruitful. I have had some minor breakthroughs and we all feel I am on the cusp of greatness (standing up unassisted). Now, the cusp could still be months away, let's not get ahead of ourselves. That said, I'm able to lift my butt off the bed a little bit in an unassisted bridge exercise and I can push my foot against resistance in a plantar flexion. More exciting, I can now kick up my left leg to full extension while seated (righty is a little behind but getting there). This happened for the first time on Monday and sent Scott over the moon. These may not sound like a lot but are the culmination of months of nerve regeneration and gentle exercising. It is very encouraging when things start to work.

We have been spending most of my physio sessions working in the parallel bars, with a focus on putting weight through my knees and proper gait for walking. Here too we've been seeing steady progress and strength gains. I no longer walk like my legs are matchsticks. My stamina is improving every session at a bit of a crazy rate. We set a benchmark of 3 lengths of the bars 3 weeks ago and today we lost count after 15 or so. I am a long way off from walking naturally or without bars or a walker, but we'll get there. I hope the steady progress continues but am taking it one day at a time. Sadly my physiotherapist is going on vacation for the next two weeks (the nerve!) and there is no one to cover, so I will be off my feet for awhile. I will still have lots to do at home though.

So there it is, a little reflection and a quick update. Ciao for now!

CIDP and Me - Weekend Update

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!

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...

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!

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.

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:

1. It is nearly impossible to open new screw-top bottles and jars. Using a little rubber jar-opening aid helps.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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.

I'm sure these will improve over time. I'm really not all that discouraged about it and know it could be a lot worse - just getting it out there.

 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!

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!

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).

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! 

CIDP and Me - Sometimes there are Good Weeks

I know, I wrote last week, how can I possibly be updating again so soon?! Well, I had a really good week and feel like sharing. Plus, I don't want this blog to be all doom and gloom and hardship, so I will take a few minutes to dwell on the little positive things.

I LOVE my new physiotherapist! She is absolutely fantastic and has kicked my motivation into hyper-drive. We've had 3 sessions now and are already seeing improvements. She is focusing on walking and sit-stand in our sessions and leaving most of the stretching and bed exercises for Scott and I to do at home. This is great as it really maximizes our time together. She did do a full assessment of my home program on Monday and made a few changes. Scott was with me for that session, which was a good thing. I was pleasantly shocked to find that I can do a few exercises that were still pipe dreams when I left rehab. I knew my legs were stronger, but didn't realize how much progress I actually made. Yay me! So physio is great. I am seeing her twice a week and feel really good about it. I've also been even more diligent with my home program. I really feel like I can and will get out of this chair. It's a nice feeling.

The weather has finally warmed up here and that is also helping my mood. We've been out a little more - I'm like the dog or a toddler and, if I'm good, we get to go to the park and then have ice cream:) We also went out for supper with some friends one night and managed to do a number of errands. Nothing too exciting but it is nice to get out.

One of the positive side effects of this whole experience has been weight loss. Much of it is muscle atrophy, but enough was good ole fat that I'm feeling good about it. I do need to work on my abs a bit though. Anyway, not to brag or complain but I have lost about 40lbs since this all started last Spring. This means that my clothes do not really fit anymore. So, after months of procrastination and delay, Scott and I hit the mall on Friday morning to restock some essentials. It was relatively painless and we ran into a couple work people, which was nice. I've finally reached a comfort level where I'm happy to run into people rather than nervous. I know my condition is a little discomforting for people when they first see me, but I'm the same person, so no need to hide.

On the home front my increased energy means that I am re-assuming an active role in the household. I can't do everything but I can tidy up and dust and fold laundry. Organization and making sure that things I may want are reachable is really important and can easily become messy piles of junk everywhere. I cleaned the shit out of the living room today and my Virgo sensibilities are finally sated.

The only negative thing that happened this week (well, other than the Brexit - WTF UK???!) is what I call a first world CIDP problem. My hands are too weak to crack open a new screw top bottle of wine. Sigh. Scott took care of it when he got home though and I have since ordered some jar opener gadgets from Amazon. Rest easy, wine is back in my blood stream (in mild-moderate amounts, of course).

So there it is. Sometimes it is possible to stay positive and motivated and to put aside the crap and enjoy the day. I hope everyone else is having a great week too.

CIDP and Me - Is Anyone Still Out There?

So much for weekly (or even monthly!) updates... My apologies. I guess life just hasn't been all that exciting. At least, I haven't hit any milestones or breakthroughs lately.

The past few months have really been more about dealing with what I call CIDP 'residuals' or 'features' than the neuropathy itself. My legs have stabilized and continue to VERY SLOWLY get stronger. I did recently develop weakness in my hands, which really sucks but I'm back on prednisone, which seems to be helping. It's these residuals that were killing me.

I blame switching from 5 day IVIG to 2 day IVIG, though that could just be a coincidence. I switched to the 2 day course every 2 weeks in March and thought it was a great plan. It would only put me out of commission for a couple days and I would have more of my life back. However, my body is just not that absorbent. My blood pressure shot up and stayed there, I started getting puffy after the first day and, to top it all off, I got incredibly nauseous and lost all appetite.

Now, turns out I had H-Pylori (a stomach ulcer) to blame for the nausea. My doctor put me on the nastiest course of antibiotics ever and I discovered that I am allergic to one of them - lovely. Talk about the cure being worse than the disease... I spent 2 weeks eating applesauce and feeling miserable. When that cleared I got another infection - oral thrush. This caused more nausea. YAY. At least the drugs were not as brutal. Meanwhile I learned my thyroid is a bit out of whack and my pressure continued to be a  concern. I'm now on a lot of pills.

I decided to switch back to 5 day IVIG and do not regret it one bit. It is a pain but I feel better and am able to function even right after the treatment. We went out for lunch and ran errands a few times and I was able to do physio on the same day. I was not puffy or nauseous at all. My pressure is still up and I'm on a different med for it now - hopefully that will work. All in all, for the first time in months, I feel good.

Now for the CIDP and physio stuff.

I've been going to the pool once a week and love it! I walk lengths of the shallow end for 45 min or so and  it feels so good. The water is soothing and I can walk without assistance and without straining my upper body. I really wish aquatherapy was available here.

This week marked another change in my physio routine. The therapist I had been seeing took another position so I am now seeing the neuro-specific therapist at the hospital. We had our first meeting yesterday and it went well. I told her I really want to work on sit-stands so I think that will be a focus. She did a quick assessment and we went for a little walk. I'm feeling good and hopeful about the change. I know not to expect miracles but a fresh perspective is always good. I think I'll be seeing her twice a week.

In other news, I am buying a wheelchair. I really hoped to not need to, but it is what it is. I ordered this kick ass carbon fibre chair that is a little more than I was planning, but worth it. Don't get me wrong, this isn't an Olympic style sporty chair or anything. But it's lightweight and comfortable and easy to maneuver. If I'm stuck in it for now, might as well be comfortable.

So there it is, a long overdue update. I am looking forward to the weather (hopefully) warming up and getting outside a little more. We have plans for the park tomorrow. I'm also working on just getting out and about more. I need to get my life back and stop living as if things are on hold. Disability or no, there is no reason for me to be a shut-in!

Ciao for now!