I stumbled on this blog about GBS and thought I would share:
Guillain-Barre Sydrome is Rare, Devastating
It's still amazing to me how many people have not heard of this terrible disease.
Step count today: 50
Steps I'm behind: 7,359
Wednesday, June 30, 2010
Tuesday, June 29, 2010
Monday, June 28, 2010
Day 179
So, techically, I didn't walk the full 1,100 steps today, however, what I did walk was so extremely difficult that it felt like I had walked 1,000 so I gave myself that much. If you've ever walked in thick sand, you know what I mean, and if you've ever walked in thick sand uphill, you really know what I mean. It's not easy to do when you're able bodied, but for me, ugh, it was the hardest thing I've done to date, and I did it in 90-something degree heat. I certainly wasn't properly prepared. I was dehydrated from the start, hadn't eaten hardly anything, and was wearing black and grey. At one point I thought I might tip over from heat stroke, but I sat down and gave myself a few minutes to compose. I made it, and afterwards felt a wonderful sense of accomplishment and I can still feel the sand under my feet!
Step count today: 1,100
Steps I'm behind: 7,261
Step count today: 1,100
Steps I'm behind: 7,261
Sunday, June 27, 2010
Day 178
Well thankfully today I did not wake up with a pounding headache, so I will have to make up for lost time once again. I plan to hit my favorite park and maybe even climb my bridge :)
Step count today:
Steps I'm behind: 8,087
Step count today:
Steps I'm behind: 8,087
Saturday, June 26, 2010
Day 177
I woke up today with a pounding headache. After several Ibuprofen and a ton of water, it still hurts. If it doesn't subside by this evening, I won't be getting much walking in, that's for sure, since it hurts worse when I stand up, or even try to move for that matter.
Only about a month to go until my trip to MN and I'm more and more excited each and every day. I need the vacation.
Step count today:
Steps I'm behind: 7,813
Only about a month to go until my trip to MN and I'm more and more excited each and every day. I need the vacation.
Step count today:
Steps I'm behind: 7,813
Friday, June 25, 2010
Wednesday, June 23, 2010
Tuesday, June 22, 2010
Monday, June 21, 2010
Day 172
I got into the beer yesterday. This is what happens when my daughter goes off with her friends and leaves me unattended. It started off as the usual "I'll just have a couple", but ended with my having more like six, and setting myself up for today's hangover. Yes, I'm that much of a lightweight these days.
It made me realize how sad I am, and how much I miss my friend. When sober, I can deal with the emotions and the grief and go about my everyday life keeping her memory alive, but not losing my mind that she's gone. Alcohol just brings the sadness to the surface and it's like a fountain that comes spewing out uncontrollably. I don't think I've cried that hard in years; maybe since my dog died (and he died on Susan's 40th birthday!).
So, here I sit today -- puffy-eyed with a headache -- missing my friend terribly. I had moved away to better myself and my life, and consequently saw her much less. It pains me that I will never see her again.
I just have to keep reminding myself that if she were here right now, she would tell me to get over it and get busy walking! She was sensational, and she could make you want to go run a marathon -- not for a second thinking that you couldn't.
(I am carrying over steps from yesterday)
Step count today: 400
Steps I'm behind: 7,565
It made me realize how sad I am, and how much I miss my friend. When sober, I can deal with the emotions and the grief and go about my everyday life keeping her memory alive, but not losing my mind that she's gone. Alcohol just brings the sadness to the surface and it's like a fountain that comes spewing out uncontrollably. I don't think I've cried that hard in years; maybe since my dog died (and he died on Susan's 40th birthday!).
So, here I sit today -- puffy-eyed with a headache -- missing my friend terribly. I had moved away to better myself and my life, and consequently saw her much less. It pains me that I will never see her again.
I just have to keep reminding myself that if she were here right now, she would tell me to get over it and get busy walking! She was sensational, and she could make you want to go run a marathon -- not for a second thinking that you couldn't.
(I am carrying over steps from yesterday)
Step count today: 400
Steps I'm behind: 7,565
Saturday, June 19, 2010
Day 170
My tickets are bought and I am leaving for my great hometown on July 28! I can't wait!
I have lots of work to do with my walking before then since I will be without chair and only have a walker.
Step count today: 342
Steps I'm behind: 7,417
I have lots of work to do with my walking before then since I will be without chair and only have a walker.
Step count today: 342
Steps I'm behind: 7,417
Friday, June 18, 2010
Wednesday, June 16, 2010
Day 167
I did a little walking without my left foot brace yesterday, and I don't think that foot is quite ready yet. I sure wish it was because the hard plastic brace is really making it sore. I will still walk as much as I can without it, but when I need to be able to walk a little faster, I will have to wear it as my foot still drags too much.
I plan to start practicing my walking outside the house. When I go to MN, I will be walking on all kinds of different terrain, so I think I need to get prepared for that. It's much more difficult walking in grass and dirt with hills and dips versus in my home on flat wooden floors or tile. There is a lot more to get tripped up on in the great outdoors, but it also makes for a better workout.
I've had my coffee and it's time to strap on my new sneaks and get to work.
Step count today: 757
Steps I'm behind: 7,262
I plan to start practicing my walking outside the house. When I go to MN, I will be walking on all kinds of different terrain, so I think I need to get prepared for that. It's much more difficult walking in grass and dirt with hills and dips versus in my home on flat wooden floors or tile. There is a lot more to get tripped up on in the great outdoors, but it also makes for a better workout.
I've had my coffee and it's time to strap on my new sneaks and get to work.
Step count today: 757
Steps I'm behind: 7,262
Tuesday, June 15, 2010
Day 166
So, I've been gone again for a few days. I received some terrible news recently that my best friend passed away, and I needed to deal with that. I'm not sure how to deal with it, really. At first I was all over the place with my emotions, bordering on a panic attack many times, until I found out it was what she wanted, then I think I found my peace.
Susan battled with cancer for a very long time. She was a strong fighting champion, and if you just met her, you would never know what she was really going through. She always had a bright, sunny smile and nice things to say. Her death came so suddenly, I assumed the cancer had finally taken over and she had lost her battle, but in reality, she won. She decided it was time, and she didn't want to suffer anymore. She took her life into her own hands like she always had and made the decision to let nature take its course. I always admired her for her courage and willingness to do what needed to be done. I know that she just knew this was going to continue to be a very long, hard battle, and the only way she would come out a winner was to decide when and how she finally let go. That takes enormous strength, something Susan definitely possessed. I will miss her terribly, but I am so glad she has found her peace in this world and I look forward to the day when I see her again.
So now that I am able to function a bit more normally, I am back to my walking routine. I bought myself some new shoes yesterday, and today I am wearing them without my foot brace just to see how my left foot does.
I have even more reason to work even harder now. Susan always cheered me on and always believed in me, and I will never let her down. I can feel her gently coaxing me, telling me I can do it and to never give up!
Step count today: 215
Steps I'm behind: 7,745
Susan battled with cancer for a very long time. She was a strong fighting champion, and if you just met her, you would never know what she was really going through. She always had a bright, sunny smile and nice things to say. Her death came so suddenly, I assumed the cancer had finally taken over and she had lost her battle, but in reality, she won. She decided it was time, and she didn't want to suffer anymore. She took her life into her own hands like she always had and made the decision to let nature take its course. I always admired her for her courage and willingness to do what needed to be done. I know that she just knew this was going to continue to be a very long, hard battle, and the only way she would come out a winner was to decide when and how she finally let go. That takes enormous strength, something Susan definitely possessed. I will miss her terribly, but I am so glad she has found her peace in this world and I look forward to the day when I see her again.
So now that I am able to function a bit more normally, I am back to my walking routine. I bought myself some new shoes yesterday, and today I am wearing them without my foot brace just to see how my left foot does.
I have even more reason to work even harder now. Susan always cheered me on and always believed in me, and I will never let her down. I can feel her gently coaxing me, telling me I can do it and to never give up!
Step count today: 215
Steps I'm behind: 7,745
Friday, June 11, 2010
Day 162
My legs were very tired yesterday. It was just one of those days. I have my great days, my OK days, and my bad days, and yesterday was one of them. I still can't get over the fact that even on my bad days I still get in over 200 steps. A year ago, a bad day would mean I took a few steps and couldn't go on. Wow.
So, God willing, today will be another big walking day. Once I have my coffee, pop a B-complex, and have a little food, it's off to the races.
Step count today: 325
Steps I'm behind: 6,864
So, God willing, today will be another big walking day. Once I have my coffee, pop a B-complex, and have a little food, it's off to the races.
Step count today: 325
Steps I'm behind: 6,864
Thursday, June 10, 2010
Day 161
I am so unbelievably excited and nervous to go back home this summer that I added a countdown timer to the top of my blog :-) I don't know if it helps, or makes it worse, but it's nice to know how much time I have left to prepare for the trip anyway.
I know the timer says "Time left to Minnesota", and earlier I posted that I would be going home to Grand Forks, North Dakota. I assure you they are the same place. I was born in Grand Forks, ND, but lived in East Grand Forks, MN. It's a little twin cities type set-up in northern Minnesota, with a river and a state line separating the two. So it's basically all the same place.
I can't help but go over the details of the trip repeatedly in my head. So much so that I could hardly sleep last night. It will definitely be all-consuming for the next 50 days.
Sometimes I am excited and feel strong and confident that I will be able to go without my chair, and other times I get really scared and start to feel the separation anxiety. In reality, I know I can do this, it's not a second thought as to whether or not I am physically capable. The only issues I will have will be the mental aspect, and I just need to start getting myself prepared for that now. I have depended on that chair for so many years that it's a natural reaction to want to reach for it when I get tired or when something is so far away I know it's going to take me a while to walk there. I have to get over that and learn to leave that chair right where it is and just go for it. People walk around with crutches and walkers all the time, and down here in Florida some of them are a LOT slower than me, so I have to stop worrying so much. I'm just so young that I get stared at a lot more, and then I get nervous, and then it's harder to focus on my walking. Must learn to block the looky-loos out.
Yesterday I started off kind of tired and weak with my walking, but I forced myself to push through it. I managed to do quite a bit without my chair like showering, making food, etc. These are things I will need to be able to do quite efficiently before I go. Making food is pretty easy as long as it's simple (easy meaning I don't have to sit down), and showering was fine as long as I have a shower chair to sit in while in the shower. For that obstacle, I will be buying myself a folding camping stool that folds to the size of my hand so I can carry it around with me in my backpack. This will be my shower chair, and emergency place to sit should I be somewhere without its own place to sit down. I know I will only be stronger and more in shape by the time I leave, but I want to be prepared and safe. My entire trip would be ruined should I fall and injure myself. As much as it pains me to even think about it, I am prepared for that, too. In the event that I should fall and injure myself, I will have to rent a wheelchair for my time up there. If the injury is so bad that I cannot manage to drive home, I will have to fly back home and go back up again when I've healed. This is all just plan D, because I know I will not fall.
I've made myself a checklist and will keep checking it and making sure I am fully prepared for the journey. I certainly wouldn't have to do all of this if I were going with my chair, but that's the fun part. The planning and the training are all part of the trip, and that makes it that much more exciting and fun. It's definitely hard work, but I have never been afraid of that!
So, once again today I will be walking as much as I possibly can. I am gradually working my way to not using the chair at all during the day, only at night for late-night bathroom trips. Eventually, I will get back to no inside chair like I was before my last major fall. I am much stronger and more confident now so another fall is a lot less likely, although still possible.
Step count today: 252
Steps I'm behind: 6,915
I know the timer says "Time left to Minnesota", and earlier I posted that I would be going home to Grand Forks, North Dakota. I assure you they are the same place. I was born in Grand Forks, ND, but lived in East Grand Forks, MN. It's a little twin cities type set-up in northern Minnesota, with a river and a state line separating the two. So it's basically all the same place.
I can't help but go over the details of the trip repeatedly in my head. So much so that I could hardly sleep last night. It will definitely be all-consuming for the next 50 days.
Sometimes I am excited and feel strong and confident that I will be able to go without my chair, and other times I get really scared and start to feel the separation anxiety. In reality, I know I can do this, it's not a second thought as to whether or not I am physically capable. The only issues I will have will be the mental aspect, and I just need to start getting myself prepared for that now. I have depended on that chair for so many years that it's a natural reaction to want to reach for it when I get tired or when something is so far away I know it's going to take me a while to walk there. I have to get over that and learn to leave that chair right where it is and just go for it. People walk around with crutches and walkers all the time, and down here in Florida some of them are a LOT slower than me, so I have to stop worrying so much. I'm just so young that I get stared at a lot more, and then I get nervous, and then it's harder to focus on my walking. Must learn to block the looky-loos out.
Yesterday I started off kind of tired and weak with my walking, but I forced myself to push through it. I managed to do quite a bit without my chair like showering, making food, etc. These are things I will need to be able to do quite efficiently before I go. Making food is pretty easy as long as it's simple (easy meaning I don't have to sit down), and showering was fine as long as I have a shower chair to sit in while in the shower. For that obstacle, I will be buying myself a folding camping stool that folds to the size of my hand so I can carry it around with me in my backpack. This will be my shower chair, and emergency place to sit should I be somewhere without its own place to sit down. I know I will only be stronger and more in shape by the time I leave, but I want to be prepared and safe. My entire trip would be ruined should I fall and injure myself. As much as it pains me to even think about it, I am prepared for that, too. In the event that I should fall and injure myself, I will have to rent a wheelchair for my time up there. If the injury is so bad that I cannot manage to drive home, I will have to fly back home and go back up again when I've healed. This is all just plan D, because I know I will not fall.
I've made myself a checklist and will keep checking it and making sure I am fully prepared for the journey. I certainly wouldn't have to do all of this if I were going with my chair, but that's the fun part. The planning and the training are all part of the trip, and that makes it that much more exciting and fun. It's definitely hard work, but I have never been afraid of that!
So, once again today I will be walking as much as I possibly can. I am gradually working my way to not using the chair at all during the day, only at night for late-night bathroom trips. Eventually, I will get back to no inside chair like I was before my last major fall. I am much stronger and more confident now so another fall is a lot less likely, although still possible.
Step count today: 252
Steps I'm behind: 6,915
Wednesday, June 9, 2010
Day 160
So, it's official, I will be going up north to see my family this summer! I am very excited about this new development, and have a lot of work and planning to do as I will be going sans chair! That's right, I will be taking a walker only... eek!
I did very well walking yesterday, and I did it all barefoot, something that has been quite difficult for me over the course of this journey. The last time I tried walking barefoot for any length of time (over 400 steps or so), my feet would get very fatigued and then turn inward onto my arches and I did not have the strength to get them back straight. To prevent this, I would simply wear my sneakers and my foot brace. Yesterday, I didn't need the shoes, or the brace, and I did rather well considering I walked over 800 steps in a somewhat short period of time!
Going on such a long trip without my wheels is something I would have never thought of doing even two months ago. I have come so far that it's almost unbelievable. This will be a huge trip, and something I need to start planning for today, but I am up for the challenge! I'm strong and capable, and I will do this.
The biggest obstacle I see as of now is the airport. I will have to get there several hours early to be sure they have a chair available to get me through the vast expanse of the airport, to the gate, and on the plane. No problem there, it just takes planning. The other obstacle will of course be fatigue, but provided I bust ass walking from now until then, I will do nothing but get into better shape than I am now, and I could do the trip now if I had to.
I will of course be in constant motion up north, going from place to place trying to see as many people as I can while I'm there, but there will always be time to sit and visit, and rest.
Who knows, maybe by then (seven weeks from now) I will be able to just take some crutches. Those would be easier to transport, although as of now they are not easier to walk with, so time will tell.
The big event will be the trip home. I am driving. Driving is the easy part, it's the stops and the walking that's the hard part. Although, after hours of being on the road, the stretching and moving around will no doubt feel good.
Besides, how can I possibly not be happy on the trip home when THIS is what I will be driving:
And P.S., the lavender house in the background is the house I grew up in! My cousins own it now. Yes, it has been that color since I can remember.
I am just vibrating with excitement right now. Time to get to work!
Step count today: 726
Steps I'm behind: 6,893
I did very well walking yesterday, and I did it all barefoot, something that has been quite difficult for me over the course of this journey. The last time I tried walking barefoot for any length of time (over 400 steps or so), my feet would get very fatigued and then turn inward onto my arches and I did not have the strength to get them back straight. To prevent this, I would simply wear my sneakers and my foot brace. Yesterday, I didn't need the shoes, or the brace, and I did rather well considering I walked over 800 steps in a somewhat short period of time!
Going on such a long trip without my wheels is something I would have never thought of doing even two months ago. I have come so far that it's almost unbelievable. This will be a huge trip, and something I need to start planning for today, but I am up for the challenge! I'm strong and capable, and I will do this.
The biggest obstacle I see as of now is the airport. I will have to get there several hours early to be sure they have a chair available to get me through the vast expanse of the airport, to the gate, and on the plane. No problem there, it just takes planning. The other obstacle will of course be fatigue, but provided I bust ass walking from now until then, I will do nothing but get into better shape than I am now, and I could do the trip now if I had to.
I will of course be in constant motion up north, going from place to place trying to see as many people as I can while I'm there, but there will always be time to sit and visit, and rest.
Who knows, maybe by then (seven weeks from now) I will be able to just take some crutches. Those would be easier to transport, although as of now they are not easier to walk with, so time will tell.
The big event will be the trip home. I am driving. Driving is the easy part, it's the stops and the walking that's the hard part. Although, after hours of being on the road, the stretching and moving around will no doubt feel good.
Besides, how can I possibly not be happy on the trip home when THIS is what I will be driving:
And P.S., the lavender house in the background is the house I grew up in! My cousins own it now. Yes, it has been that color since I can remember.
I am just vibrating with excitement right now. Time to get to work!
Step count today: 726
Steps I'm behind: 6,893
Tuesday, June 8, 2010
Day 159
I know, I know, I've been away for a few days. That doesn't mean I didn't walk or keep track, however.
This past weekend I took some more time on my living room painting project. I am still in the prep-work phase, but it's getting there. It's a big living room, and a big project. We're talking full renovation here, not just slapping on a coat of paint. I am removing all the trim, which will be replaced later with real wood instead of the plastic that was up there prior, and the actual painting will consist of two coats of primer (the walls are very dry and very dirty) followed by two to three coats of paint. Plus the ceiling. Phew!
So needless to say I've been a busy girl, and continue to stay busy, which I like. If I have nothing to do I get very bored, very easily, and that's when I become destructive. Idle hands...
So, today I will be getting in some good walking numbers. Today is one of those days that I put on my sneakers and come sit at my desk, and then intermittently get up and go walk for 50-150 steps at a time.
Step count today: 856
Steps I'm behind: 7,329
P.S. All of today's steps were done barefoot. Woo Hoo!
This past weekend I took some more time on my living room painting project. I am still in the prep-work phase, but it's getting there. It's a big living room, and a big project. We're talking full renovation here, not just slapping on a coat of paint. I am removing all the trim, which will be replaced later with real wood instead of the plastic that was up there prior, and the actual painting will consist of two coats of primer (the walls are very dry and very dirty) followed by two to three coats of paint. Plus the ceiling. Phew!
So needless to say I've been a busy girl, and continue to stay busy, which I like. If I have nothing to do I get very bored, very easily, and that's when I become destructive. Idle hands...
So, today I will be getting in some good walking numbers. Today is one of those days that I put on my sneakers and come sit at my desk, and then intermittently get up and go walk for 50-150 steps at a time.
Step count today: 856
Steps I'm behind: 7,329
P.S. All of today's steps were done barefoot. Woo Hoo!
Friday, June 4, 2010
Day 155
Today I am going to pump myself full of Ibuprofen and see how many steps I can walk before I absolutely HAVE to sit down.
I'm seeing myself going to Grand Forks, ND (my hometown) this summer, and I would love nothing more than to be able to walk, even if with the aid of my walker, but it's going to take some more endurance to pull off a trip like that.
More later...
1:37 PM Update:
I was able to walk 200 steps non-stop with no breaks until I was extremely fatigued. I know I could have walked more, but my arms were on fire and my legs were getting weak so I didn't want to chance a fall.
Step count today: 343
Steps I'm behind: 7,626
I'm seeing myself going to Grand Forks, ND (my hometown) this summer, and I would love nothing more than to be able to walk, even if with the aid of my walker, but it's going to take some more endurance to pull off a trip like that.
More later...
1:37 PM Update:
I was able to walk 200 steps non-stop with no breaks until I was extremely fatigued. I know I could have walked more, but my arms were on fire and my legs were getting weak so I didn't want to chance a fall.
Step count today: 343
Steps I'm behind: 7,626
Thursday, June 3, 2010
Wednesday, June 2, 2010
Day 153
It was a long holiday weekend, and the down-time, and chance to do what I wanted with my time, was much needed.
Yesterday was a long busy day of catch-up from the weekend. Isn't that always how it goes? We end up needing a vacation from our vacation.
Today it's back to the grindstone. I will be giving her hell on the step count once again! Although the rest felt good, I'm anxious to get back at it. I still got in a few steps here and there, but nothing like I do on a normal walking day.
Step count today: 325
Steps I'm behind: 7,578
Yesterday was a long busy day of catch-up from the weekend. Isn't that always how it goes? We end up needing a vacation from our vacation.
Today it's back to the grindstone. I will be giving her hell on the step count once again! Although the rest felt good, I'm anxious to get back at it. I still got in a few steps here and there, but nothing like I do on a normal walking day.
Step count today: 325
Steps I'm behind: 7,578
Tuesday, June 1, 2010
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