All I want this Valentine's Day is a donation or even a share of my GoFundMe page :)
Showing posts with label guillain barre awareness. Show all posts
Showing posts with label guillain barre awareness. Show all posts
Saturday, February 13, 2016
Guillain-Barre Syndrome Awareness - Happy Valentine's Day
I thought I would share some nice pictures I came across that were taken before I got sick. These were taken the summer before. I miss that body. Those long, strong legs. Who would think that someone this healthy and fit would be sick and half dead in just a few months, and all due to some strange illness they had barely even heard of at the time.
Monday, February 8, 2016
Someone To Lean On
As usual, leaning on my beautiful daughter for support. She has turned into such an amazing woman throughout all the struggles we've been through together. She is a caring and loving person who just wants to help people, and she's pursuing that dream. She officially became a CNA this month and works at a psychiatric hospital, and will be returning to school to pursue a nursing degree. I couldn't be more proud.
This photo was taken in 2010 on a trip we took that summer after I began using my walker to try to get stronger and hopefully walk again someday. That actually went quite well for a few years until my hysterectomy in late 2013 when all of the new issues began. I have fought and fought but whatever is causing problems now seems to keep winning. I'm still fighting!
(Originally posted August 12, 2010)
Sunday, February 7, 2016
Original Post: 7-21-10 (Day 201 - New Spasms, New Pains)
Another post I found in my archives that I wanted to re-share. 2010 was the year I began trying very hard to get my legs stronger and began using my walker and pushing myself to walk more and more every day. I documented my step count each day in my blog, and also updated with posts like the one below telling of new changes I was feeling. Funny that I am still having the pain and spasms in the hips, but it's so much worse and I'm unable to stand or walk. Back then, although I was having the contracting spasms, once they were over my legs would just go back to being limp and numb. Now, I still get the very painful contracting spasms, but my legs no longer return to being limp and numb. It's as if they are in a permanent contraction of some kind, and they are sensitive to touch which they never were before.
I'm trying to piece all of this together in my mind, and put it all down in my blog as well so that I have a record. My memory isn't the greatest because of all the medications I have to take, and I want this all available to show to Mayo.
I do remember how great it felt to be up and moving around again, though, and I miss that so much! It's a struggle every single day not to fall into a pit of depression because of this again.
(originally posted July 21, 2010):
"All of this walking is certainly doing something. I can tell by the new, and quite powerful spasms, and the new pains. My left leg can spasm so strong and painful that it feels as if my leg will rip right off my body at the hip. This has caused a new constant pain to form in that very same hip. My legs in general are hurting more than ever, but in a good way. It feels like they are sore. The kind of sore you feel after a really long bike ride, or a muscle-ripping workout at the gym. In other words: it's all good!
For a while I still had some doubts as to whether or not I really would see any significant progress in my strength and ability, but those doubts are starting to fade. The more new pain I feel, the more I realize walking is that much closer to a reality. Standing up from a seated position has gotten easier, my endurance has increased, I can stand for longer periods, and walking is becoming second nature once again. I catch myself reaching for my walker even when I've decided to rest and use the chair. That development is the best yet. I not only have to change my way of getting around, but my way of thinking as well.
I am getting really excited for my trip in six days. I'm still a little bit nervous, but I'm more excited and looking forward to it than ever. I know it will be hard work, and I don't care. I'm so happy I am able to do something that just six months ago was just a dream."
I'm trying to piece all of this together in my mind, and put it all down in my blog as well so that I have a record. My memory isn't the greatest because of all the medications I have to take, and I want this all available to show to Mayo.
I do remember how great it felt to be up and moving around again, though, and I miss that so much! It's a struggle every single day not to fall into a pit of depression because of this again.
(originally posted July 21, 2010):
"All of this walking is certainly doing something. I can tell by the new, and quite powerful spasms, and the new pains. My left leg can spasm so strong and painful that it feels as if my leg will rip right off my body at the hip. This has caused a new constant pain to form in that very same hip. My legs in general are hurting more than ever, but in a good way. It feels like they are sore. The kind of sore you feel after a really long bike ride, or a muscle-ripping workout at the gym. In other words: it's all good!
For a while I still had some doubts as to whether or not I really would see any significant progress in my strength and ability, but those doubts are starting to fade. The more new pain I feel, the more I realize walking is that much closer to a reality. Standing up from a seated position has gotten easier, my endurance has increased, I can stand for longer periods, and walking is becoming second nature once again. I catch myself reaching for my walker even when I've decided to rest and use the chair. That development is the best yet. I not only have to change my way of getting around, but my way of thinking as well.
I am getting really excited for my trip in six days. I'm still a little bit nervous, but I'm more excited and looking forward to it than ever. I know it will be hard work, and I don't care. I'm so happy I am able to do something that just six months ago was just a dream."
Wednesday, August 14, 2013
Health Update August 14
Hello all,
Here is the latest update on the giant tumor in my belly:
I have had a battery of tests, including a biopsy of my uterus, all of which have come back normal! Thank God, <taking a moment to actually thank Him>. It is not cancer, and that makes me grateful beyond grateful. I can handle anything with a smile on my face knowing I'm not battling the dreaded 'C' word.
Surgery to have a full hysterectomy and remove the tumor/tumors and my uterus was scheduled for this coming Monday, August 19th, but upon further testing, that has been postponed because my thyroid levels are dangerously low, and with good reason, my doctor will not perform the surgery until that is under control. So, a tiny little pill every day to sort that out is all I have to do, and once I'm back to "normal" we will reschedule the surgery.
I am very excited to have this surgery. I have wanted my uterus gone for many years. These fibroid tumors run in my family, and I have known I have at least two for some time now, so I figured one day it would be a good idea to just have it taken out. That day has come.
It's nice to fully understand why I've been feeling so awful these past couple of years. The weakness is explained by the tumor and my severe hypothyroidism. Actually, all of my recent symptoms are explained away by both of these issues, and it's really great knowing that will be fixed. My doctor is also referring me to a neurologist after my surgery to take a look at my condition and see if there is any way we can fix that too :)))
All in all, this is a good development in my life. I have a lot to do, and will have some recovery time after the surgery, but that's a walk in the park compared to what it could have been. I wake every morning with a smile on my face and thank God for sparing me. I'm not done being a mommy to my beautiful daughter yet, and I want to see my grand babies and do a lot more in this life -- whether I can walk normal or not.
Thank you to all of you who have already sent me well wishes! I appreciate it so much, and it's so nice to know there are so many wonderfully caring people in this world!
Never Give Up
Here is the latest update on the giant tumor in my belly:
I have had a battery of tests, including a biopsy of my uterus, all of which have come back normal! Thank God, <taking a moment to actually thank Him>. It is not cancer, and that makes me grateful beyond grateful. I can handle anything with a smile on my face knowing I'm not battling the dreaded 'C' word.
Surgery to have a full hysterectomy and remove the tumor/tumors and my uterus was scheduled for this coming Monday, August 19th, but upon further testing, that has been postponed because my thyroid levels are dangerously low, and with good reason, my doctor will not perform the surgery until that is under control. So, a tiny little pill every day to sort that out is all I have to do, and once I'm back to "normal" we will reschedule the surgery.
I am very excited to have this surgery. I have wanted my uterus gone for many years. These fibroid tumors run in my family, and I have known I have at least two for some time now, so I figured one day it would be a good idea to just have it taken out. That day has come.
It's nice to fully understand why I've been feeling so awful these past couple of years. The weakness is explained by the tumor and my severe hypothyroidism. Actually, all of my recent symptoms are explained away by both of these issues, and it's really great knowing that will be fixed. My doctor is also referring me to a neurologist after my surgery to take a look at my condition and see if there is any way we can fix that too :)))
All in all, this is a good development in my life. I have a lot to do, and will have some recovery time after the surgery, but that's a walk in the park compared to what it could have been. I wake every morning with a smile on my face and thank God for sparing me. I'm not done being a mommy to my beautiful daughter yet, and I want to see my grand babies and do a lot more in this life -- whether I can walk normal or not.
Thank you to all of you who have already sent me well wishes! I appreciate it so much, and it's so nice to know there are so many wonderfully caring people in this world!
Never Give Up
Wednesday, December 15, 2010
Perspective
Today marks nineteen weeks that I have been walking, and I am definitely seeing changes. Changes not only in my muscle structure in my lower body, but also in my balance, coordination, and strength. It seems that just when I forget how far I've come, I meet someone who puts me in my place without realizing it, and makes me remember how lucky I am.
Last night I met a family who is dealing with some big challenges. It made me realize that there are so many more people in this world who are dealing with so much worse than me, and it made me want to fight that much more, and that much harder, because I would feel like I'm taking advantage if I don't. How dare I slack off or want to sometimes give up when there are others who would give anything to be where I am right now.
I am in no way discrediting myself or my challenges, but it's nice sometimes to get thrown a little perspective. It also makes me feel good to know I give some people hope, just as others have given me. I know how hard it is to go through such a drastic, life-altering thing, and if I can give back in any way, it makes it all worth it. Paying it forward, that's what it's all about.
Elizabeth, if you're reading this, I don't know your details, I only know the little you told me, and the sadness and stress in your eyes. All I can tell you is to keep your chin up and keep fighting for both yourself, and your husband. You touched my heart with your determination and resolve, and I truly hope that you and your family can enjoy whatever time you have left with your husband; be it one day or twenty years! No one knows why life is full of such sorrow sometimes, but all we can know is how we choose to deal with it.
I will keep you and your family in my thoughts and prayers, and don't be afraid to keep in touch!
Sometimes all we need to keep going is a little perspective!
Last night I met a family who is dealing with some big challenges. It made me realize that there are so many more people in this world who are dealing with so much worse than me, and it made me want to fight that much more, and that much harder, because I would feel like I'm taking advantage if I don't. How dare I slack off or want to sometimes give up when there are others who would give anything to be where I am right now.
I am in no way discrediting myself or my challenges, but it's nice sometimes to get thrown a little perspective. It also makes me feel good to know I give some people hope, just as others have given me. I know how hard it is to go through such a drastic, life-altering thing, and if I can give back in any way, it makes it all worth it. Paying it forward, that's what it's all about.
Elizabeth, if you're reading this, I don't know your details, I only know the little you told me, and the sadness and stress in your eyes. All I can tell you is to keep your chin up and keep fighting for both yourself, and your husband. You touched my heart with your determination and resolve, and I truly hope that you and your family can enjoy whatever time you have left with your husband; be it one day or twenty years! No one knows why life is full of such sorrow sometimes, but all we can know is how we choose to deal with it.
I will keep you and your family in my thoughts and prayers, and don't be afraid to keep in touch!
Sometimes all we need to keep going is a little perspective!
Wednesday, November 17, 2010
Day 320: Four Months Walking!
Today marks four months since I got rid of my house chair and have been walking with a walker!
I know that I set a new goal and then kind of dropped off the face of the Earth, but I have been dealing with everything that comes along with walking versus using a chair, and life in general. I got sick of hearing myself talk, and just haven't been able to come up with anything to say. Maybe that's what writer's block feels like?
But, I figured today I should say something since it's the four-month mark.
I think I'm going to take down the newest goal and give myself a break until the new year. With everything that is going on in my life right now, it just adds too much pressure.
After four months of walking, I definitely see improvements, although small and slow-going. Every time I feel like I'm taking two steps forward and four steps back, I remind myself that I spent 12 years in a wheelchair and it's going to take some time. I can't help but be impatient sometimes.
So, here's to four months! Hopefully in four more months I'll have something significant to say.
I know that I set a new goal and then kind of dropped off the face of the Earth, but I have been dealing with everything that comes along with walking versus using a chair, and life in general. I got sick of hearing myself talk, and just haven't been able to come up with anything to say. Maybe that's what writer's block feels like?
But, I figured today I should say something since it's the four-month mark.
I think I'm going to take down the newest goal and give myself a break until the new year. With everything that is going on in my life right now, it just adds too much pressure.
After four months of walking, I definitely see improvements, although small and slow-going. Every time I feel like I'm taking two steps forward and four steps back, I remind myself that I spent 12 years in a wheelchair and it's going to take some time. I can't help but be impatient sometimes.
So, here's to four months! Hopefully in four more months I'll have something significant to say.
Wednesday, October 20, 2010
Day 292: Three Months!
I have been walking for three months! It just doesn't seem like that long. I have definitely progressed, and although I haven't quite progressed as much as I had hoped, it's still progress and I am thankful. I know I still have a long road ahead.
Sunday, October 17, 2010
Day 289
This newest goal is going to be a huge pain in the ass. It's too easy to fall behind too quickly, and since I have run out of Aleve and haven't had time to get to the store to get more, the pain is too intense to walk much more than 400-600 steps a day. Ugh.
I'm not really complaining; I set these goals on purpose to push myself. But, like anything, when the reality sets in it's a bit of a shock until you get some momentum going.
I'll get in the groove. I just better do it quickly, or before I know it January will be here and I won't have made it more than halfway.
So, starting Monday I am stocking up on Aleve and preparing for the months ahead. I certainly have plenty of projects that will help me get lots of steps in, so once I get numbed up a bit more I will tackle those and kill two birds with one stone. Hopefully by Christmas my living room and master bath will be finished, and I will be that much closer to the 100k mark!
Step count today: 585
Steps I'm behind: 3,735
I'm not really complaining; I set these goals on purpose to push myself. But, like anything, when the reality sets in it's a bit of a shock until you get some momentum going.
I'll get in the groove. I just better do it quickly, or before I know it January will be here and I won't have made it more than halfway.
So, starting Monday I am stocking up on Aleve and preparing for the months ahead. I certainly have plenty of projects that will help me get lots of steps in, so once I get numbed up a bit more I will tackle those and kill two birds with one stone. Hopefully by Christmas my living room and master bath will be finished, and I will be that much closer to the 100k mark!
Step count today: 585
Steps I'm behind: 3,735
Wednesday, October 13, 2010
Day 285: Eleven Weeks!
Today marks eleven weeks with no chair! Woo Hoo!
Step count today: 672
Steps I'm behind: 2,006
Step count today: 672
Steps I'm behind: 2,006
Tuesday, October 12, 2010
Day 284 - 81 Days Left
I think I'm feeling better, finally. I certainly have more energy this morning than the past few mornings. I just hope it stays with me so I can get a decent step count in today!
Step count today: 973
Steps I'm behind: 1,502
Step count today: 973
Steps I'm behind: 1,502
Monday, October 11, 2010
Day 283
Since the inception of my latest goal, I am already falling behind in step count, but this could not be helped. I have been sick with an annoying cold the past week or so, and it really decided to kick my ass this weekend. My big plans of yard work and cleaning went right out the window when I woke up Saturday morning and realized I had zero energy.
I didn't have that much more energy this morning, but my coffee is kicking in and I will probably take some cold medicine to get me through the rest of the day. I really need to get in as much walking as I can today, it will be easy to fall really far behind on this goal, it's a big one!
Step count today: 388
I didn't have that much more energy this morning, but my coffee is kicking in and I will probably take some cold medicine to get me through the rest of the day. I really need to get in as much walking as I can today, it will be easy to fall really far behind on this goal, it's a big one!
Step count today: 388
Sunday, October 10, 2010
Saturday, October 9, 2010
Friday, October 8, 2010
Day 280: New Goal
After some not-so-careful thought, I have decided to reset the ticker and attempt 100,000 steps by Jan 1, 2011.
There are 85 days left in this year, which means I would need to walk 1,176 steps each and every day in order to accomplish this goal, and that is just what I need to do to push myself even further toward walking unassisted.
I am already walking a bunch each day, so I really need to up the ante and kick myself in the ass (so to speak). I also plan to add some strength training, but it's just too complicated to try to make a ticker for that... !
At this point, if my triceps get much bigger, I could just have them transplanted into my legs somewhere for added strength! I already have massive arms for a woman, I don't really need them to get any bigger. At least now I am using different muscles than when I was in the chair and they are getting balanced out, but enough is enough! It's just all the more reason to get those legs stronger and take the focus off my upper body.
So, here goes!
Step count today: 1058
There are 85 days left in this year, which means I would need to walk 1,176 steps each and every day in order to accomplish this goal, and that is just what I need to do to push myself even further toward walking unassisted.
I am already walking a bunch each day, so I really need to up the ante and kick myself in the ass (so to speak). I also plan to add some strength training, but it's just too complicated to try to make a ticker for that... !
At this point, if my triceps get much bigger, I could just have them transplanted into my legs somewhere for added strength! I already have massive arms for a woman, I don't really need them to get any bigger. At least now I am using different muscles than when I was in the chair and they are getting balanced out, but enough is enough! It's just all the more reason to get those legs stronger and take the focus off my upper body.
So, here goes!
Step count today: 1058
Wednesday, September 29, 2010
Day 271: Nine Weeks!
Even as someone who can handle a lot of pain, at one point a few days ago I wasn't sure how much more I could stand. It's amazing what a couple of days of taking it easy will do for the pain level. I feel great today!
I get so caught up in my recovery, that I forget how important it is to rest. It's a key element in the balance of our bodies, like proper diet and sleep. Although I am the kind of person who likes to push herself to the limit, I must also stop and take the time to rest and let my body repair and heal.
I have mentioned before that I am not good at sitting still. This part of me has only been amplified since I've been walking more and more. I sit for a period and then think I need to get up and do something -- just because I can. So I do, and then after a few days of overdoing things, I pay dearly. Only then do I stop and make myself rest. I really need to rethink my strategy and perhaps treat walking like I would a workout. Work hard one day, rest the next. It certainly makes more sense, but for me is hard to do.
Since today is Wednesday, and the first day of my tenth week of walking, I figure I will work hard since I am rested and feeling good. That will make Monday, Wednesday and Friday my hard working days, with Tuesday, Thursday, Saturday and Sunday as my easier days.
I had an idea last night for a way to get more walking in without really having to think so much. I thought; why not set something up where I have to carry something from one place to another? The back and forth, back and forth will give me exercise, but I will be doing something at the same time so it won't seem like a waste of time or like I'm going to die of boredom. Since I am moving next year, I will have to start cleansing my things and getting rid of old stuff, etc, so I will put a box by the back door, and I will take things one by one to that box that will eventually go to Goodwill or Freecycle. Considering how much crap I have laying around I should get some really great exercise out of this!
Once I am done with that I will just have to keep coming up with new and more difficult things to do.
Nine weeks in and I am really starting to see and feel the changes! My right leg is getting much stronger, and it's only a matter of time before my left follows.
I get so caught up in my recovery, that I forget how important it is to rest. It's a key element in the balance of our bodies, like proper diet and sleep. Although I am the kind of person who likes to push herself to the limit, I must also stop and take the time to rest and let my body repair and heal.
I have mentioned before that I am not good at sitting still. This part of me has only been amplified since I've been walking more and more. I sit for a period and then think I need to get up and do something -- just because I can. So I do, and then after a few days of overdoing things, I pay dearly. Only then do I stop and make myself rest. I really need to rethink my strategy and perhaps treat walking like I would a workout. Work hard one day, rest the next. It certainly makes more sense, but for me is hard to do.
Since today is Wednesday, and the first day of my tenth week of walking, I figure I will work hard since I am rested and feeling good. That will make Monday, Wednesday and Friday my hard working days, with Tuesday, Thursday, Saturday and Sunday as my easier days.
I had an idea last night for a way to get more walking in without really having to think so much. I thought; why not set something up where I have to carry something from one place to another? The back and forth, back and forth will give me exercise, but I will be doing something at the same time so it won't seem like a waste of time or like I'm going to die of boredom. Since I am moving next year, I will have to start cleansing my things and getting rid of old stuff, etc, so I will put a box by the back door, and I will take things one by one to that box that will eventually go to Goodwill or Freecycle. Considering how much crap I have laying around I should get some really great exercise out of this!
Once I am done with that I will just have to keep coming up with new and more difficult things to do.
Nine weeks in and I am really starting to see and feel the changes! My right leg is getting much stronger, and it's only a matter of time before my left follows.
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