Wednesday, June 27, 2007
Phantoms
The last two days I've been working with the students at UIndy again. I was a "patient" for four of the PT students. The first day they came in (individually) and worked with me to evaluate my mobility, range of motion, and strength. The second day they worked with me on exercises that they (individually) came up with for a home exercise program. On the second day, while one of the students was working with me, I had a sharp phantom pain and, along with it, extremely strong phantom sensations. It was as if, for five to ten seconds, everything that is gone, from the tips of my toes to my knees, woke up all at once. It basically felt like there was a strong current of energy flowing through my lower legs.
I know I've mentioned the phantom pains/sensations before, but I don't know that I've ever really described them in any detail, or what kind of impact they have on my daily life. What I've described above is by far the most intense sensation that I've had yet. In general, the sensations are much more mild and I can usually ignore them altogether. The pains, however, are a much different matter. I'll get to that in a moment, for now, lets stick with the sensations.
My right leg doesn't bother me much. From time to time I'll get a tingly feeling coming from someplace around where my calf muscle should be, or occasionally it will feel like my foot is trying to wake up. My left leg, on the other hand, is pretty much always active. I constantly have the pins and needles feeling from where the bottom of my foot and ankle should be, and sometimes from where my calf or the underside of my knee should be. The pins and needles thing is pretty much constant but, it's so regular that I don't really pay attention to it unless it intensifies like it did the other day. The sensations come in waves, or pulses, which intensify and fade, but it's never been as strong as it was yesterday.
As I said, the sensations are more like the pins and needles feeling you get after your limbs have fallen asleep, but sometimes they also feel warm. I've wondered lately if it's actually some memory imprint that the fire left on my nerves. When the waves are intensifying and fading I almost feel as if the flames are still licking at my legs but without causing severe pain. I can usually get the sensations to stop by rubbing on the residual limb and giving the nerves a different sensation to focus on, however, sometimes the sensations return as soon as I stop. This is most distressing when I'm wearing the prostheses and can't get to my legs to rub them, or during the night when they return as soon as I stop rubbing. Indeed, there have been nights when I've been awakened by the sensations, and could not return to sleep because they went on for several hours at an intensity that I could not ignore. This is why it's important to have a good book by the bed but, sometimes even an enthralling story is not enough to make them go away.
The pains are totally different. They range in intensity from a pinch, to a sharp pain, to severe muscle spasms. The severe muscle spasms are the worst because they will go on for several seconds at a time, and I'll feel a muscle twitching uncontrollably, and painfully, that no longer exists! These come on unannounced, and frequently at an intensity that I can't hide. Just this afternoon, while at lunch with my boss, in the middle of a conversation, I let out an involuntary "arrgh!" and reached for my right calf as my leg involuntarily raised up with the pain. The pains don't last too long but, as happened this afternoon, will continue to repeat for several minutes at a time. Sadly, there's nothing I can do to ease the pains. I just have to wait until they subside.
Luckily, the Baclofen that I take each morning and night does help keep them under control but, it doesn't eliminate it all together. Renee and I talked about this yesterday and we may start to look at finding another alternative. It's strange to say, but I'm not sure I want them to go away completely. Sometimes it's nice to have a reminder of what it felt like to have my lower legs, even if it is only the painful or uncomfortable sensations that I get to experience now. When I'm wearing the prostheses and I have mild sensations it almost feels as if the legs are real. The sensations actually react to my steps so it feels kind of like it does when you try to walk on a foot that's fallen asleep. The other reason that I don't want to see them go away completely is that it's kind of a fun topic to discuss. Of course, the questions generally don't come up until I make a strange face or grunt with pain at an inappropriate time (is there an appropriate time?) but it's always a great way to strike up a conversation!
I know I've mentioned the phantom pains/sensations before, but I don't know that I've ever really described them in any detail, or what kind of impact they have on my daily life. What I've described above is by far the most intense sensation that I've had yet. In general, the sensations are much more mild and I can usually ignore them altogether. The pains, however, are a much different matter. I'll get to that in a moment, for now, lets stick with the sensations.
My right leg doesn't bother me much. From time to time I'll get a tingly feeling coming from someplace around where my calf muscle should be, or occasionally it will feel like my foot is trying to wake up. My left leg, on the other hand, is pretty much always active. I constantly have the pins and needles feeling from where the bottom of my foot and ankle should be, and sometimes from where my calf or the underside of my knee should be. The pins and needles thing is pretty much constant but, it's so regular that I don't really pay attention to it unless it intensifies like it did the other day. The sensations come in waves, or pulses, which intensify and fade, but it's never been as strong as it was yesterday.
As I said, the sensations are more like the pins and needles feeling you get after your limbs have fallen asleep, but sometimes they also feel warm. I've wondered lately if it's actually some memory imprint that the fire left on my nerves. When the waves are intensifying and fading I almost feel as if the flames are still licking at my legs but without causing severe pain. I can usually get the sensations to stop by rubbing on the residual limb and giving the nerves a different sensation to focus on, however, sometimes the sensations return as soon as I stop. This is most distressing when I'm wearing the prostheses and can't get to my legs to rub them, or during the night when they return as soon as I stop rubbing. Indeed, there have been nights when I've been awakened by the sensations, and could not return to sleep because they went on for several hours at an intensity that I could not ignore. This is why it's important to have a good book by the bed but, sometimes even an enthralling story is not enough to make them go away.
The pains are totally different. They range in intensity from a pinch, to a sharp pain, to severe muscle spasms. The severe muscle spasms are the worst because they will go on for several seconds at a time, and I'll feel a muscle twitching uncontrollably, and painfully, that no longer exists! These come on unannounced, and frequently at an intensity that I can't hide. Just this afternoon, while at lunch with my boss, in the middle of a conversation, I let out an involuntary "arrgh!" and reached for my right calf as my leg involuntarily raised up with the pain. The pains don't last too long but, as happened this afternoon, will continue to repeat for several minutes at a time. Sadly, there's nothing I can do to ease the pains. I just have to wait until they subside.
Luckily, the Baclofen that I take each morning and night does help keep them under control but, it doesn't eliminate it all together. Renee and I talked about this yesterday and we may start to look at finding another alternative. It's strange to say, but I'm not sure I want them to go away completely. Sometimes it's nice to have a reminder of what it felt like to have my lower legs, even if it is only the painful or uncomfortable sensations that I get to experience now. When I'm wearing the prostheses and I have mild sensations it almost feels as if the legs are real. The sensations actually react to my steps so it feels kind of like it does when you try to walk on a foot that's fallen asleep. The other reason that I don't want to see them go away completely is that it's kind of a fun topic to discuss. Of course, the questions generally don't come up until I make a strange face or grunt with pain at an inappropriate time (is there an appropriate time?) but it's always a great way to strike up a conversation!
Wednesday, June 20, 2007
The New Normal
A while back I talked about how life was returning to normal. In regards to the daily activities of life, working, driving, shopping, etc... life is getting closer and closer to normal. However, it is far from what normal life is/was truly like. In general I try to focus on the positive improvements and special moments in life to remain positive now. However, there are times when I find myself thinking back on life as it was before.
I don't know what triggers these moments, and they don't last all day, nor do they ruin my day but they do put things into perspective. While I was still in the hospital Mary Lowe, a dear family friend and co-worker of my Father, made a comment to Dad about how this would become the "new normal". A year and a half later it is becoming the new normal, which does make it easier to deal with, but it is hard. People frequently make comments to me about how "they couldn't do it" or "would have given up." My response is that no one knows how they would respond to something like this until it happens to them. The reality is that I am alive and am simply living life. The fact is the New Normal is very difficult which is why I don't think about the old normal very often.
It's important to me that everyone understand what the New Normal is. I start my day by getting into a wheelchair, taking pills to help control the phantom pains and sensations, and then getting onto a bench in the shower where I have to do several balancing acts to get everything clean. I tend to choose what pants I'm going to wear based on whether or not I remembered (if it was necessary) to change my shoes the night before.
I have to wear pants that have been altered with zippers that run almost the full length of the inseam so that I can get them on easier. I put my pants on one leg at a time, and then I put my legs on one leg at a time. I do another balancing act while pulling up my pants and trying to make sure my shirt is tucked in. Once the pants are on I then stand up and, while leaning on my bed, put weight on my left leg to be sure it's on all the way. (It rarely goes on all the way while I'm in a sitting position.)
Then, while still in the wheelchair, I make my way to the garage and try to keep the cat from getting into the garage at the same time. This is why I have to stay in the chair because, it's my only chance at moving fast enough to keep the cat out. (6 out of 10 times this works) If the cat gets in the garage it adds at least another 5 minutes before I can leave for work.
I drive for an hour, with my hands, which is really quite fun, but sometimes I'm already exhausted by the time I get to work. Once I get to work I have to pull the wheelchair out of the car and put it together. At work it is a challenge to find opportunities to walk because I usually have to carry something with me, which I can't really do with two crutches unless it fits in a shoulder bag. I do get up when I can and the staff has started to push me to walk as I've realized that I'm having more difficulty walking longer distances again. (A direct result of returning to work full time and not walking as often as I was during my LOA.)
After a long day I make my way back out to the car where I get in the car, position my legs, dismantle and load the wheelchair and then start the hour drive back. Once I'm home I usually take my legs off, and then take the pants off the legs. (unless I have someplace else to go). At the end of the night I take the liners off my legs, wash the liners, wash my legs, put lotion on my legs, and take more pills to control the phantom pains and sensations.
I walk up and down stairs sideways and slowly. When I go up a ramp it's pretty easy as long as the slope is right but going down is almost always scary. Stepping off a curb is a scary process as well because I never know if I might fall. In fact, I have to be prepared to fall at anytime, because I don't really get any warning.
This is just the every day process of the "New Normal". The only way that I can positive is to not think about it as anything other than what life is now and enjoying what is fun about life. I have to enjoy the moment or else I would get lost in the mire of the process of living.
Thank you for all the comments this past week. They really do help me, as reading your comments is always one of the moments I look forward to each day!
I don't know what triggers these moments, and they don't last all day, nor do they ruin my day but they do put things into perspective. While I was still in the hospital Mary Lowe, a dear family friend and co-worker of my Father, made a comment to Dad about how this would become the "new normal". A year and a half later it is becoming the new normal, which does make it easier to deal with, but it is hard. People frequently make comments to me about how "they couldn't do it" or "would have given up." My response is that no one knows how they would respond to something like this until it happens to them. The reality is that I am alive and am simply living life. The fact is the New Normal is very difficult which is why I don't think about the old normal very often.
It's important to me that everyone understand what the New Normal is. I start my day by getting into a wheelchair, taking pills to help control the phantom pains and sensations, and then getting onto a bench in the shower where I have to do several balancing acts to get everything clean. I tend to choose what pants I'm going to wear based on whether or not I remembered (if it was necessary) to change my shoes the night before.
I have to wear pants that have been altered with zippers that run almost the full length of the inseam so that I can get them on easier. I put my pants on one leg at a time, and then I put my legs on one leg at a time. I do another balancing act while pulling up my pants and trying to make sure my shirt is tucked in. Once the pants are on I then stand up and, while leaning on my bed, put weight on my left leg to be sure it's on all the way. (It rarely goes on all the way while I'm in a sitting position.)
Then, while still in the wheelchair, I make my way to the garage and try to keep the cat from getting into the garage at the same time. This is why I have to stay in the chair because, it's my only chance at moving fast enough to keep the cat out. (6 out of 10 times this works) If the cat gets in the garage it adds at least another 5 minutes before I can leave for work.
I drive for an hour, with my hands, which is really quite fun, but sometimes I'm already exhausted by the time I get to work. Once I get to work I have to pull the wheelchair out of the car and put it together. At work it is a challenge to find opportunities to walk because I usually have to carry something with me, which I can't really do with two crutches unless it fits in a shoulder bag. I do get up when I can and the staff has started to push me to walk as I've realized that I'm having more difficulty walking longer distances again. (A direct result of returning to work full time and not walking as often as I was during my LOA.)
After a long day I make my way back out to the car where I get in the car, position my legs, dismantle and load the wheelchair and then start the hour drive back. Once I'm home I usually take my legs off, and then take the pants off the legs. (unless I have someplace else to go). At the end of the night I take the liners off my legs, wash the liners, wash my legs, put lotion on my legs, and take more pills to control the phantom pains and sensations.
I walk up and down stairs sideways and slowly. When I go up a ramp it's pretty easy as long as the slope is right but going down is almost always scary. Stepping off a curb is a scary process as well because I never know if I might fall. In fact, I have to be prepared to fall at anytime, because I don't really get any warning.
This is just the every day process of the "New Normal". The only way that I can positive is to not think about it as anything other than what life is now and enjoying what is fun about life. I have to enjoy the moment or else I would get lost in the mire of the process of living.
Thank you for all the comments this past week. They really do help me, as reading your comments is always one of the moments I look forward to each day!
Thursday, June 14, 2007
A Small World
I think I've talked about it before but it continues to astound me how small the world is. These strange connections keep happening. Little examples of how interwoven our lives truly are. Here are a few examples:
In the very early days, while I was still in the Burn Unit, one of the nurses who took care of me happened to be the older brother of someone I was in the Jazz Band with in High School. More recently, my friend Amber, who works for WIBC, was interviewing the Fire Chief from Greencastle who happened to be one of the people who was at the scene of the accident. Somehow they made the connection. I believe he told her that it was a fire he would never forget. (I'm sure you can all imagine why.)
Even more recently, while Dot was putting together the concert she managed to come across some old friends. While dropping off some information at a local church (I may not get this exactly right) she met the mother of a friend of mine from Junior High School, who is also a good friend of my High School Sweetheart. I'm not sure, but she may have even spoken with my X. (We're on good terms now so, if she did speak with her, I'm confident it went well.) Dot's quest also led her to contact the Kroger corporate office, where she spoke with Marcia Burnett, who ran the bookstore at Broad Ripple High School when I was there. (When I would skip class that was one of the places that I would hang out.) Marcia was kind of the school mom my group of friends back then. She always watched out for us and was ready to give great advice. (Not sure where I'd be if we didn't have her.)
Amber came back in to the mix again about two weeks ago when her son Perrin (my God Son) took a gift to his teacher on the last day of school. At the same time there was a little girl presenting her going away gift to the teacher. The gift was one of our cookbooks! Perrin recognized it immediately and asked "Where did you get that?!" The teacher said "It's just a cookbook", to which Perrin replied "that's no ordinary cookbook!" Turns out the little girl is my cousin Lyla, daughter of my cousin Sarah (my generation), daughter of my cousin Karen (Mom's generation, who is the daughter of my Aunt Jeanie, who is my Grandpa's sister. Perrin and Lyla were in the same class and we never knew it!
Dot recently sent me an e-mail that I think fits with this very well:
A mouse looked through the crack in the wall to see the farmer and his wife open a package.
What food might this contain? The mouse wondered - he was devastated to discover it was a mousetrap.
Retreating to the farmyard, the mouse proclaimed the warning: There is a mousetrap in the house! There is a mousetrap in the house!
The chicken clucked and scratched, raised her head and said, "Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me." "I cannot be bothered by it."
The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!"
The pig sympathized, but said, "I am so very sorry, Mr. Mouse, but
there is nothing I can do about it but pray. Be assured you are in my prayers."
The mouse turned to the cow and said "There is a mousetrap in the house! There is a mousetrap in the house!"
The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."
So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap alone.
That very night a sound was heard throughout the house -- like the sound of a mousetrap catching its prey.
The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught.
The snake bit the farmer's wife. The farmer rushed her to the hospital, and she returned home with a fever.
Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.
But his wife's sickness continued, so friends and neighbors came to sit with her around the clock.
To feed them, the farmer butchered the pig.
The farmer's wife did not get well; she died.
So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.
The mouse looked upon it all from his crack in the wall with great sadness.
So, the next time you hear someone is facing a problem and think it doesn't concern you, remember -- when one of us is threatened, we are all at risk.
We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.
REMEMBER,,,,
EACH OF US IS A VITAL THREAD IN ANOTHER PERSON'S TAPESTRY; OUR LIVES ARE WOVEN TOGETHER FOR A REASON.
Whether you were conscious of this or not, almost two years ago you gathered together to support my family and I when we were threatened, and (although the recent drop in comments doesn't support this) you haven't left my side since.
In the very early days, while I was still in the Burn Unit, one of the nurses who took care of me happened to be the older brother of someone I was in the Jazz Band with in High School. More recently, my friend Amber, who works for WIBC, was interviewing the Fire Chief from Greencastle who happened to be one of the people who was at the scene of the accident. Somehow they made the connection. I believe he told her that it was a fire he would never forget. (I'm sure you can all imagine why.)
Even more recently, while Dot was putting together the concert she managed to come across some old friends. While dropping off some information at a local church (I may not get this exactly right) she met the mother of a friend of mine from Junior High School, who is also a good friend of my High School Sweetheart. I'm not sure, but she may have even spoken with my X. (We're on good terms now so, if she did speak with her, I'm confident it went well.) Dot's quest also led her to contact the Kroger corporate office, where she spoke with Marcia Burnett, who ran the bookstore at Broad Ripple High School when I was there. (When I would skip class that was one of the places that I would hang out.) Marcia was kind of the school mom my group of friends back then. She always watched out for us and was ready to give great advice. (Not sure where I'd be if we didn't have her.)
Amber came back in to the mix again about two weeks ago when her son Perrin (my God Son) took a gift to his teacher on the last day of school. At the same time there was a little girl presenting her going away gift to the teacher. The gift was one of our cookbooks! Perrin recognized it immediately and asked "Where did you get that?!" The teacher said "It's just a cookbook", to which Perrin replied "that's no ordinary cookbook!" Turns out the little girl is my cousin Lyla, daughter of my cousin Sarah (my generation), daughter of my cousin Karen (Mom's generation, who is the daughter of my Aunt Jeanie, who is my Grandpa's sister. Perrin and Lyla were in the same class and we never knew it!
Dot recently sent me an e-mail that I think fits with this very well:
A mouse looked through the crack in the wall to see the farmer and his wife open a package.
What food might this contain? The mouse wondered - he was devastated to discover it was a mousetrap.
Retreating to the farmyard, the mouse proclaimed the warning: There is a mousetrap in the house! There is a mousetrap in the house!
The chicken clucked and scratched, raised her head and said, "Mr. Mouse, I can tell this is a grave concern to you, but it is of no consequence to me." "I cannot be bothered by it."
The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!"
The pig sympathized, but said, "I am so very sorry, Mr. Mouse, but
there is nothing I can do about it but pray. Be assured you are in my prayers."
The mouse turned to the cow and said "There is a mousetrap in the house! There is a mousetrap in the house!"
The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."
So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap alone.
That very night a sound was heard throughout the house -- like the sound of a mousetrap catching its prey.
The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught.
The snake bit the farmer's wife. The farmer rushed her to the hospital, and she returned home with a fever.
Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.
But his wife's sickness continued, so friends and neighbors came to sit with her around the clock.
To feed them, the farmer butchered the pig.
The farmer's wife did not get well; she died.
So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.
The mouse looked upon it all from his crack in the wall with great sadness.
So, the next time you hear someone is facing a problem and think it doesn't concern you, remember -- when one of us is threatened, we are all at risk.
We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.
REMEMBER,,,,
EACH OF US IS A VITAL THREAD IN ANOTHER PERSON'S TAPESTRY; OUR LIVES ARE WOVEN TOGETHER FOR A REASON.
Whether you were conscious of this or not, almost two years ago you gathered together to support my family and I when we were threatened, and (although the recent drop in comments doesn't support this) you haven't left my side since.
Wednesday, June 13, 2007
Delay
Sorry to do this but, I have an early class (for work) in Bloomington tomorrow so I'll be going to bed early tonight. I still have some things to take care of, therefore, I'll do this weeks update tomorrow evening.
Wednesday, June 06, 2007
Just a quick update tonight
I spoke with Renee this week about the plan to move towards the C-legs. We are definitely moving ahead with the process. It will still be several months before I actually have them as a lot of things need to be worked out. New feet and possibly another fitting just to mention a few.
The new feet I will be getting will be more responsive and more adaptive. I wish I could describe them better but I really don't know many details. I may even need to try a few different brands (types?, whatever the right word is, anyway...) to be sure I have the feet that will give me the right amount of assistance and support.
As I've said before, this is going to be a long process, but it is going to happen. It is exciting but, I've got to admit, I look forward to the day that life is no longer about the repercussions of the accident. A time when life is just life. Getting the C-legs will move me closer to that time. It will still take several years for all of the dust to settle. (it's as if a Volcano erupted in my life) However, each achievement, like the C-legs) gets me one step closer to having clear skies again.
The new feet I will be getting will be more responsive and more adaptive. I wish I could describe them better but I really don't know many details. I may even need to try a few different brands (types?, whatever the right word is, anyway...) to be sure I have the feet that will give me the right amount of assistance and support.
As I've said before, this is going to be a long process, but it is going to happen. It is exciting but, I've got to admit, I look forward to the day that life is no longer about the repercussions of the accident. A time when life is just life. Getting the C-legs will move me closer to that time. It will still take several years for all of the dust to settle. (it's as if a Volcano erupted in my life) However, each achievement, like the C-legs) gets me one step closer to having clear skies again.
