Tuesday, 24 January 2017

A snowbird at 43

I just came in from being outside. It's Sunday afternoon, about 6 degrees above zero and there was actually some blue sky. It feels like spring. We have been home since Thursday night (late) and that is the first blue sky I have seen since we left Florida - and I gather that January has been grey the whole time we have been away. Those that I have spoken to since returning have asked what was the best part of our trip - my answer - the sun. It was just so glorious. It warmed my body and healed my soul. If you have been south in winter then you know what I mean.

I have been trying to organize my thoughts for this post - there is a lot to share (and remind myself about) so I  apologize in advance for it's length. Accessibility on board, no plans for Mexico, Canada vs. US taxis, holidays in general, everyone has a story and of course, the food. Here we go.

I am feeling a thousand times better than I did in December. It must have been a virus - I can't figure it out otherwise. The turn came at the right time, that is for sure. I am not sure what I would have done if I had continued to feel like that while on holiday. Where in December I was feeling 4/5 like crap, I have flipped it and have four good days out of every five. Still have the occasional bit of nerve pain in my feet and the ever present "line pain", but I no longer want to die. I still napped a lot, hoping I would get to a late night show - but did you know that late means starting at 10:45pm?? Napping helped me get through dinner - not enough for a show. One night Theo put the three of us to bed and went off to a show on his own :)

We sailed on Royal Caribbean's Independence of the Seas. It's a huge ship with more than 4000 people on board and 1500 staff. We had a fabulous stateroom. Our travel agent did a fabulous job finding it - a Junior Suite with bunk beds, a king bed, accessible bathroom (with roll in shower), two closets, couch, roll-under vanity and roll out balcony with two chaise lounges and a table and chairs. A lot of thought went into the accessibility features of the room including the location of light switches (beside the bed), a mini ramp that covered the track for the sliding door and the lower safe in the closet. Some things were odd though, like the grab bar on the wall behind the fold down shower bench and the pull down bar in the closet that folds back up in order to close the door (and causes all your hangers to fall). The thing that they have to change though is the carpet. And this goes for all hotel rooms too - accessible rooms SHOULD NOT HAVE CARPET. Sorry for yelling.

That would actually be my biggest complaint about the ship - the carpet. It is everywhere. In the elevators, down the hallways, in the rooms, theaters, casino, arcade, dining rooms, everywhere! It's a big ship (14 decks) with a lot of travelling necessary - and the carpet just makes it all quite exhausting. I was happy to have someone to push me over that dastardly carpet when I was tired.
I did NOT swim here - this is the surfing pool, and that is Oliver learning to surf on his 11th birthday!

I did get out of my chair and into the pool - although it took some work to make it happen. It was not obvious to me where the lift was so I went to the Guest Services to ask. They didn't even know that they had a lift (so they made a call) and then directed me to the pool attendants at the towel exchange desk. As I left I heard one staff say to another that in 11 years she had not known they had one. I went to the towel desk and asked about using the lift to get into the pool...and they had to make a call. Finally, someone came to show me where it was - we went together (weaving through all the loungers full of people). I had not seen this lift earlier because it looked nothing like a lift. Anyway, they set it up, I transferred to the seat and they throw the switch to "up" (me and the seat had to go up and over a lip and then down into the pool).

What is slower than molasses in January? How about dial up? Oliver getting ready for bed? Add this pool lift to that list. Holy cow. Nothing like having 1000 sets of eyes on you when all you want to do is sink under the water and pretend to be like everyone else. Out of my chair. It appeared to us that the lift had not been used for a long time, as was obvious from all the phone calls, and the hydraulic fluid was not topped up. So as I sat and waited for it to move (was it even moving?) I wondered if I would do this again. Of course I needed to in order to get out - but after that? And what about the hot tub lift? That was even higher and I would have to kick out all the kids!

Well, I did attempt to use the lift again. I was hot, there were not as many people around the pool and I wanted to swim. I got back on that lift only to discover that it was actually broken - the part that held the seat on had sheared off - not a quick fix. I wish we had noticed before I almost fell off and bruised my back. So the pool attendant went and got his rubber boots on. He and Theo lifted me over the lip and then once seated on the edge of the water Theo more or less dropped me into the pool. Still a spectacle.

Which brings me to a feeling. Being on this trip was one of the rare times that I have been away from my Huron County/Parkwood habitat. I felt exposed and invisible at the same time. No one on that ship knew my story - almost everywhere I have been in the past 18 months, someone (if not many) knew why I was using a wheelchair. It was a weird feeling. I noticed that I behaved differently and I am not really sure why. I didn't make eye contact like I usually do. In the dining room we had a wonderful table for four right beside the window. It meant we had to weave through some tables and had to have other guests pull in their chairs in order for me to get by. Initially, I felt badly about it - that I was causing people to be inconvenienced. But then I thought - no, I am going to keep my beautiful table - so sorry that you will have to squish into your table for a moment while I wheel past in my chair that I will use for the rest of my life.
Mango Margarita. Yum. 

We did get off the ship for a day - in Cozumel. We had no plan, had decided just to wing it. In the planning stages we had been offered an accessible taxi and a beach wheelchair for the day for $95pp. That was going to be $400 for a day and that didn't include snorkeling, lunch or drinks. On the advice of friends we decided to turn that down and just see what we could find. Well, we did it, jumped (with a messy transfer (sans slider board)) into a regular taxi who took us to a resort where, for $15 each we could snorkel (with a drink, tequila tasting and a 15 min massage). It was accessible only in that there were ramps for getting to the coral beach but not into the water. We called on the assistance of strangers in order to get me in and out of the water - people like to help. Snorkeling made this trip for me and might be my new thing. It brings my ability (swimming) and my love of nature together. Guess we'll be moving to the Bahamas after all.
Theo and Ella are way out there with their snorkels on. Water was warm and lots of fish to see. 

Getting on and off the ship was way easier than I ever thought it would be. I got to jump all sorts of line ups - at customs, boarding the plane, in the ship terminal and the best one was getting off the ship the last day. We went down at our assigned time to the place where people with accessibility needs were to go. They asked me if I needed help and I said that it depended on what the ramps were like. One of the staff (actually a restaurant staffer) took my chair (and me) and said "let's see what we can do" and off we went with him shouting ahead "excuse us, wheelchair coming through". We got by everyone in line waiting to get off the ship and all the way into the terminal. Normally I am not happy when someone starts pushing me and my chair...he was awesome.

Ship to airport service had to be a taxi for us. The bus shuttle service is not one that I can easily get on and off. Taxi service in Florida and Toronto can not be compared. We were able to get an accessible taxi without waiting any longer than any other guest. It only cost $15 for about a 15 minute metered ride - and that is with me being able to stay in my chair. Pearson is another story altogether. We needed a ride from Terminal 1 to the Fairfield Marriot where we had left our car...a distance of 1.1km. Again, the hotel shuttle was not an option so we needed a taxi. We got in line, and I let the attendant know that we needed an accessible taxi and he said "Yeah, get in line". So we did. When we got to the head of the line I repeated my request to the other attendant who then radioed for one. He then informed me that there were no wheelchair taxis in the compound. In all of Pearson International Airport - the largest airport in Canada - there were no wheelchair accessible taxis available? Come on. Did I mention that we didn't even have to wait in Florida? Yeah, I did. So we had to take a van that I had to transfer into the front seat...and the cost? Guess...

$30. Seriously? Pearson Airport taxi service - get your shit together.

Air Canada was ready for me, which was great, but next time I'll request seats not at the back of the plane. I mean really? Why so far back? It already is a longer time sitting on the plane (first on, last off) and then I have to wait for them to bring the aisle chair all the way to the back. When we landed in Toronto the cleaners were on the plane before the aisle chair came back. It was a full hour after the plane was at the gate before we were off. I am not sure that that is an acceptable time frame. It sure made going home all in one day quite tiring.

You see, we took three days to get to the ship. I wanted to build in some contingency time - to account for the likelihood of bad weather. So leaving the ship on Thursday morning, getting to the airport, sitting and waiting, flying (sitting and waiting), piling into a taxi to get to our car (sitting and waiting for CAA to boost our dead battery) and then driving home meant that my legs had not moved from a seated position for almost 15 hours. This was not a good thing. I have learned my lesson. My lower legs, ankles and feet  were so swollen full of fluid they were turgid. If you were to sit for 15 hours you could at least wiggle your toes and flex your ankles - these small muscle contractions would help with circulation. I did nothing other than sit with my feet up for an hour at the airport. Next time I will figure out ways to move my legs - I didn't realize how bad it was going to be. I slept that night with my legs elevated and even so it was a full 24 hours before my feet looked normal.

So how does this novel end? I am glad we went. I am grateful we were able to afford it. I need to go back. I want to be a snowbird.

I forgot to talk about the food. It was amazing. This was a no-egg dessert that the kitchen made just for my guys. 

Friday, 13 January 2017

Pasty Canadians

First leg of our journey complete. Air Canada was wonderful; a huge thank you to the Underwood family for getting us here. We were at the gate just in time to be summoned and loaded first on the plane. They did okay when we got to Fort Lauderdale too, although I think the company responsible for that kind of thing had at least eight people helping out. Too many hands!

It's weird getting off the plane and not having to go through customs; I guess we did that at Pearson - we're still wrapping our heads around it. We left the baggage claim to go find a taxi and I am sure we passed by the area where the shooting was last week. Lots of demolition and a fork lift of new drywall going in at 7pm. I'm so sad for all the families involved.  Our taxi driver in Toronto had a lot to say about it; he thought that all guns should be destroyed and the world would be a better place. If only it were that easy.

We walked out to a wosh of humidity  (23 degrees). It didn't take long to find an accessible taxi, no longer than if we had wanted a regular one. I chuckle when my chair gets all strapped and cranked into the back of the van. Because that's it - just my chair gets strapped in, not me! I don't wear a seatbelt in my chair so I'm not actually attached to the van! The driver in Fort Lauderdale was pretty quiet. But boy was he fast! We asked him to come back tomorrow and take us to the ship. Transport problem solved.

We laughed on the plane. For a moment we thought we were having a "no drive" week. To us, a no drive day means that we don't drive either of our cars. We pat ourselves on the back when it happens  (usually only because our road is closed in winter) as it is our contribution to reducing the global carbon footprint. We realized what a joke it was to think we'd be reducing! Look at the tens of thousands of pounds of carbon our flight and cruise ship will be spewing into the air!

The hotel we are staying at tonight has an outdoor pool  (of course, it's Florida) and it has a lift! So guess what this pasty white Canadian girl is going to do tomorrow? Yup, swim. The kids were in tonight and claimed that it was cold...so I won't last long. But I'm going in. We lifted the cover to see how it worked and it seemed to not be plugged in. Not seeing an obvious answer we went to the front desk to ask. The response: No joke, "what lift"? The maintenance man knew what I was talking about but he didn't have a clue either (although he took a serious look at it). He said that the Chief Engineer would be in first thing and would have it working for me. "What time would you like to swim?" So nice, these Americans.

This will likely be it for posting until we get home, we opted not to pay $12 per day for Internet. And I apologize for my lack of proof reading; this was all done on my phone!

Anchors away  (as they say). We're set and I dare say that I think I am feeling better. Even after a long day of travel I am not a basket case and it's 10pm!

Sunday, 8 January 2017


I have a new favourite spot to sit in the house. I look out the big window to the north, sit beside the new (remote controlled) propane fireplace and look out at the snow. We have replaced the wood stove in the family room with this new one - it's a whole lot safer for me and it means I don't have to rely on someone being here to load it with wood. One click of a button and I have heat to my space - where I can stand in my standing frame and ride my "bike". I am 7/7 for my standing frame resolution. So far, so good.

I made the kids put on their snowshoes today, because it is something that I would have done on a day like today. Roads closed, lots of snow - what else is there to do but ski or snowshoe? I loved to put on my snowshoes and just go anywhere - no groomed trail required. Facebook has been an evil thing to me lately because I see all the pictures of my friends who love the outdoors - out there on their snowshoes, breaking trail. How I yearn to be out with them. In my previous life I would have been, no matter what marking needed to be done, or what was on the calendar, I would be out there, sweating in my layers and loving every minute. It breaks my heart knowing that I will never be able to do that again. I have yet to figure out how to fit a snowshoe on a wheelchair.

Today I shovelled; all of about ten square feet, but I did it. It was an experiment to see how I could manage in this deep snow. My Mountain Trike works relatively well, but it's hard to steer tight corners, so the small space at the end of the ramp was all I was able to manage. It was a start. And I was out in the sun. Cold winter sun, but sun nonetheless.

This was taken later in the day...the sun had gone and the snow was beginning again. The part I shoveled was from the driver's door of my car to the end of the ramp. I have a long way to go before I am of much help on the snow removal front. 

Speaking of sun...I heard it's going to be 24 in Florida next week. Good thing, because that is where we will be :) That was the big surprize for the kids at Christmas, we are going on a five night Caribbean cruise. It is not at all something we would have done before - we were more the hiking/camping/canoeing type of family - but things have changed, and so we must change our way of thinking, being and spending.

My friends-who-use-chairs say that cruising is the most accessible holiday that there is. The ships are governed under US laws, therefore the Americans with Disabilities Act comes into play - laws that put our similar (but not equal) Ontario laws to shame. And from what I hear the staff on these ships go above and beyond to help those who need it.

I look forward to the food, and not in the eat-all-the- ice cream-possible way you might think. I look forward to piling my plate with salads, protein and fruit; things that are harder to come by this time of year. I have been not doing so well with "clean eating" - pretty hard when the house is full of sweets. I have bought a book that is a guide to diet and SCI - reading it has caused me to be hard on myself, but I have learned some too, I'm maybe not as bad as I might think.

So we are off for some sun. Today was a day to pack. Tomorrow I get my botox done again - here's hoping we can get to Owen Sound. The house/cat sitter/snow remover is arranged. The airline and hotels know I'm coming - I have very high expectations for an accessible Air Canada, let's hope they live up to them.

We're off!

Friday, 6 January 2017

Dark days, darker nights

I have started this post many, many times, but mostly in my head. I have not actually been writing because, frankly, I have had nothing to say. Nothing good that is. I did not want to write about how crappy I felt, how absolutely miserable, full of pain in my body and darkness in my mind I have been for the past months. Feeling like there is no way I can continue to live feeling like this. It was just not possible. So I didn't write. Because this is what it has been like.

Barely able to make it to bed before falling apart, usually in tears. UTI after UTI. I scarcely remembering what it felt like to not have an infection, to not hurt. To have my feet feel like they are immersed in a bucket filled with icy water. Or the nights the nerve pain made my feet felt like they were squeezed into size 6 shoes for a full day (I wear an 8). My T4 line pain like a burning hot belt pulled tightly around my chest - to the point where I could feel every breath, every heartbeat all the way around. Cancelling appointments. Doing nothing that I didn't absolutely have to do. Nothing but watching Netflix and sleeping until 11am - so not me.

Pain sucks the life out of the living.

All the while I am trying to understand, to figure out why do I feel so awful? I had many months of feeling "good". Why, now, is the pain so bad? What is different? What did I do/not do that I should/shouldn't have done? What did I eat that I shouldn't have? Is is the weather? Is it an infection? What am I not doing that I should be? And worst of all, is it all in my head? It is known that thinking of pain makes the pain even more pronounced. Am I bringing this all on myself? And then my head goes down the road to the future...how will I ever do the things I have planned, travel, work, contribute to society? How?

Dark days and even darker nights. I last, without tears, until about 8pm. After that all bets are off and you would not want to keep my company. Christmas didn't even cheer me up for long.

So what's the deal?

I have no idea.

I have taken no fewer than three urine samples for analysis. All were negative. What? Yeah right. Try again. I got to the point of saying "when you dip it, it will be negative. You have to do a CNS (plate it) and it will grow something." Here I am, telling the professionals how to do their jobs. I was beginning to feel like a real pain in the ass. Twice to emerg. A total hypochondriac. But I knew something was wrong. I could feel it. BUT because my body is so fucked up, it could not tell me what was going on. What was wrong.

Guess what?

I still don't know.

My doctor called yesterday and we had a good chat. No infection. I no longer feel like a hypochondriac, nor a pain in the ass. But I still have no answers. I think I am coming out of this darkness. I think this only because I have felt okay for three days now. Not three in a row mind you, but three out of at least 30. I keep a calendar where I track pain and meds and any crazy shit that my body does. I was, back in November, tracking the days that I had particularly bad nerve pain. Well, I stopped tracking the bad days and instead tracked the good days, which was easier to do. Because there were none. Back at that time the pain was the effect of infection after infection. Three in fact, back to back. So naturally in the end of December I assumed that's what it was.

Now, I think that it was a virus. Or maybe an allergic reaction to the antibiotics (as would explain the hives that have come every night for the past two weeks) and goodness knows my poor gut is feeling the effects of those.

So now I am trying to make my head think that I am coming out of this darkness. I have to be. It was one (maybe two?) months out of 18. I'm no mathie, but in the grand scheme of things, that's not a large ratio. It is so hard to find perspective. The gains are small now compared to what they were at the beginning, and lord knows my expectations are still high, but good things, improvements are still happening. It's just hard to see them. Hard to remember them.

That's where my people come into play. To give me love. Hugs. To remind me that things are happening, getting better. Stronger. Like how, just in the past five days, I have been able to stand in my standing frame without my head spinning (hardly at all). I still need my people. I can't do this alone and my poor family, well they need love and hugs too. What am I saying? Everyone does.

It's funny how writing helps. I manage to spin all these thoughts in my head into words. Words that, in order to reflect accurately what it in my head, should be dark and scary. Moreso now than ever. But here I am, again, trying to find something good. Flipping it. Do I do that because I am writing and others are reading? Or do I do that because I know it will help me feel better. Maybe a bit of both.

And, now I will remind myself that, the sun will come again.

It can't stay dark forever.

(I wish I could remember this when I need it most.)
One of the kids took this picture for me last month. It is the sun rising in the east, through the kitchen window. Windows that I can't see out of because of their height. Not that I could get of of be early enough to witness it anyway.