I had several folks ask me about the title on the last post. Most had figured it out, but had never heard the song. The line is from a song by Rodney Atkins named "If You're Going Through Hell" and I latched on to it this year since it just described exactly how I felt. When I hear it, I turn it up very loud and and sing along (it is a scary thing) and usually end up with tears in my eyes as I renew my resolve to win this battle. I suspect many of you can relate as well. The chorus/refrain is what I hammer on hard!
These are the lyrics:
Well you know those times
When you feel like there's a sign there on your back
Says I don't mind if ya kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do
You step off the straight and narrow
And you don't know where you are
Use the needle of your compass
To sew up your broken heart
Ask directions from a genie
In a bottle of Jim Beam
And she lies to you
That's when you learn the truth
If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there
Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right into the trap that they were laying, yeah
But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back up on your feet
The one's that you've been dragging for so long
You're on your knees
You might as well be praying
Guess what I'm saying
If your going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there
Yeah, If you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out
Before the devil even knows you're there
If you're going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there
Yeah, If you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out
Before the devil even knows you're there
Yeah, you might get out
Before the devil even knows you're there.
I have told many of you that I looked into some very dark places this year. It was only my faith and the continued support and prayers from you that gave me the strength to keep going. Never ever under estimate the power of prayer!
Steve
Sunday, January 24, 2010
Monday, January 18, 2010
You Might Get Out Before the Devil Even Knows You're There
It has been an interesting few weeks to say the least. Therapy continues to be intense and productive.
Judi continues to gain the most ground in PT. We have started electrical stimulation therapy on her neck and left leg and it is showing some promising results. Her neck control has improved significantly, but we still have a long way to go before she holds it up continuously. The leg continues to grow stronger day by day. The legs are getting a lot of activity from routine as well as therapy activities. I am more confident than ever that she will be able to walk again in the near future (although it will be a while before the stamina and muscle strength returns). More about the legs later.
In OT space, she is doing better with the tasks they are asking her to do. She has developed an affection for the "reacher." This is the device with a clamp on the end that she activates by squeezing a trigger on the other end (about three feet long). Similar to what is used to pick up trash on the side of the road. She is becoming pretty good with grabbing things she shouldn't and I am sure I will be assaulted at some point when I least expect it. We continue to work on the left arm and it is continuing to improve slowly, but surely.
Speech continues to show improvement as well. We have started using music to get her to relax and maybe sing along to some of her faves. She has hummed to a couple and we still hope to find the secret to opening the flood gates. She has all the individual pieces, but still needs to put them in the right order to carry on a conversation. More on speaking later as well.
Now for the other side.
Judi's right leg is just about to drive both of us nuts! She has developed a need to move and push that leg continuously. She has bent a 3/16th inch piece of steel that makes up the foot plate of her wheel chair as well as the tube that makes up the leg by pushing on it. We often have to remove this extension to prevent her from potentially damaging her knee and/or ankle. When she is in this mode, she is totally consumed by it. If you have ever had a severe muscle cramp, multiply your response by 10 and you are getting close to how she responds. She can't seem to stop it on her own, but I can get her to relax for brief periods of time by holding her very tight and essentially getting her to relax to the point she is nearly asleep. When she is in bed, I have to essentially wrap her in my arms and legs and talk her to sleep. If I move too much, she wakes up and starts all over again. As you can guess, there is little opportunity for me to sleep in this mode and her bed rail and I are developing an intimate relationship. She is trying hard to control it which only adds to her frustration. I am struggling because I am afraid she is hurting and I can't figure out how to get her some relief. So much has changed with her in the last few weeks that it is impossible to connect this to any one thing. I suspect it is a combination of mental and physical reactions as her awareness continues to grow and the therapy continues to stress weak muscles. We are going to move her into different chairs in our home (fixed, recliner, etc.) to see if there is one that makes her comfortable and see if that allows her to sleep. Some of you know that Judi suffered from a pretty severe case of "restless leg syndrome" prior to the accident and there is some concern this may be surfacing again. The main problem is that the medications that are used to treat this condition tend to slow mental activity which is the opposite of what we are trying to accomplish. We will continue to search for the solution and I am sure we will ultimately find it.
Judi also had her first neurologist appointment. We had been waiting until her recovery reached a point where she was actually stable enough to evaluate and treat as appropriate. I walked away from the appointment with mixed feelings, but overall felt we had accomplished a great deal. Judi has had a few minor seizures during her recovery which is very common for people with this type of injury. Due to the limited number and duration of the seizures, we decided not to treat her with an anti-seizure medication up to this point since it also tends to slow the brain activity that we are trying to stimulate. Judi also frequently "zones out" and has a blank stare on her face. If you touch her or talk to her, she will come right back to you. She has done this throughout her recovery after she became alert again. We believe this occurs when she is trying to make a mental connection in response to some new stimulus. We have been assured that these are not seizures due to her response when she is touched or talked to in this state. We refer to this as "Judi Land" when she goes here and we usually just watch her and make sure there are no additional symptoms that emerge. After looking at all of Judi's medical history and discussions with her neurosurgeon, there is just no good reason why she is not talking. The majority of the language function resides on the left side of the brain and Judi has not exhibited any other symptoms of left brain issues. Based on all of the data that we have, the neurologist indicated there is a possibility that she is having low level seizures on the left side of her brain that are not severe enough to show any of the traditional symptoms. This could be the reason she is struggling to talk. Based on all of this, they did convince me to put her on an anti-seizure medication for a limited period of time to see how she responds. We have also scheduled an EEG for early Feb (first available time) to monitor her brain activity which may also provide some valuable information as well. My girl also proved me right once again in the Dr.'s office. During the discussion of her symptoms, I indicated that I felt she was fully aware of what was going on round her and they gave me that "sure she can" look that everyone in my situation learns to identify. When we discussed the side effects of the proposed medications, one of the most common is that they get "edgy" and a bit short tempered (just what I need with the most independent and forceful woman I have ever met). When this came up, I made the comment to please not administer something that sets the anaconda free and Judi busted out laughing. All of the Dr.s and nurses looked at me and I simply responded: I told you she understands. I think there are some new believers.
There was also another first this weekend. The weather was so perfect Monday that I decided to get on my motorcycle and just get away for an hour or so (Judi's caretaker was here so that I could get some errands done). I have always found that this was good medicine when the world started to close in on me. This was the first time I had really set off to just go into "Steve Land" since Judi was injured. I am not sure how it happened, but I found myself on roads that we had ridden together (as doubles or with both bikes). There must have been a lot of irritants in the air that day because I couldn't get my eyes to stop watering and ultimately had to head back home. It did give me some time for some special thanks and prayers as I contemplated how much our world has changed.
Thank you all for your continued support of Judi and our family. Your prayers are the best medicine she can receive and I am sure that we will ride together again very soon. Just FYI, someone asked me how long Judi and and I had been riding together the other day. Our first date together was on a motorcycle and that was almost 31 years ago.
Steve
Judi continues to gain the most ground in PT. We have started electrical stimulation therapy on her neck and left leg and it is showing some promising results. Her neck control has improved significantly, but we still have a long way to go before she holds it up continuously. The leg continues to grow stronger day by day. The legs are getting a lot of activity from routine as well as therapy activities. I am more confident than ever that she will be able to walk again in the near future (although it will be a while before the stamina and muscle strength returns). More about the legs later.
In OT space, she is doing better with the tasks they are asking her to do. She has developed an affection for the "reacher." This is the device with a clamp on the end that she activates by squeezing a trigger on the other end (about three feet long). Similar to what is used to pick up trash on the side of the road. She is becoming pretty good with grabbing things she shouldn't and I am sure I will be assaulted at some point when I least expect it. We continue to work on the left arm and it is continuing to improve slowly, but surely.
Speech continues to show improvement as well. We have started using music to get her to relax and maybe sing along to some of her faves. She has hummed to a couple and we still hope to find the secret to opening the flood gates. She has all the individual pieces, but still needs to put them in the right order to carry on a conversation. More on speaking later as well.
Now for the other side.
Judi's right leg is just about to drive both of us nuts! She has developed a need to move and push that leg continuously. She has bent a 3/16th inch piece of steel that makes up the foot plate of her wheel chair as well as the tube that makes up the leg by pushing on it. We often have to remove this extension to prevent her from potentially damaging her knee and/or ankle. When she is in this mode, she is totally consumed by it. If you have ever had a severe muscle cramp, multiply your response by 10 and you are getting close to how she responds. She can't seem to stop it on her own, but I can get her to relax for brief periods of time by holding her very tight and essentially getting her to relax to the point she is nearly asleep. When she is in bed, I have to essentially wrap her in my arms and legs and talk her to sleep. If I move too much, she wakes up and starts all over again. As you can guess, there is little opportunity for me to sleep in this mode and her bed rail and I are developing an intimate relationship. She is trying hard to control it which only adds to her frustration. I am struggling because I am afraid she is hurting and I can't figure out how to get her some relief. So much has changed with her in the last few weeks that it is impossible to connect this to any one thing. I suspect it is a combination of mental and physical reactions as her awareness continues to grow and the therapy continues to stress weak muscles. We are going to move her into different chairs in our home (fixed, recliner, etc.) to see if there is one that makes her comfortable and see if that allows her to sleep. Some of you know that Judi suffered from a pretty severe case of "restless leg syndrome" prior to the accident and there is some concern this may be surfacing again. The main problem is that the medications that are used to treat this condition tend to slow mental activity which is the opposite of what we are trying to accomplish. We will continue to search for the solution and I am sure we will ultimately find it.
Judi also had her first neurologist appointment. We had been waiting until her recovery reached a point where she was actually stable enough to evaluate and treat as appropriate. I walked away from the appointment with mixed feelings, but overall felt we had accomplished a great deal. Judi has had a few minor seizures during her recovery which is very common for people with this type of injury. Due to the limited number and duration of the seizures, we decided not to treat her with an anti-seizure medication up to this point since it also tends to slow the brain activity that we are trying to stimulate. Judi also frequently "zones out" and has a blank stare on her face. If you touch her or talk to her, she will come right back to you. She has done this throughout her recovery after she became alert again. We believe this occurs when she is trying to make a mental connection in response to some new stimulus. We have been assured that these are not seizures due to her response when she is touched or talked to in this state. We refer to this as "Judi Land" when she goes here and we usually just watch her and make sure there are no additional symptoms that emerge. After looking at all of Judi's medical history and discussions with her neurosurgeon, there is just no good reason why she is not talking. The majority of the language function resides on the left side of the brain and Judi has not exhibited any other symptoms of left brain issues. Based on all of the data that we have, the neurologist indicated there is a possibility that she is having low level seizures on the left side of her brain that are not severe enough to show any of the traditional symptoms. This could be the reason she is struggling to talk. Based on all of this, they did convince me to put her on an anti-seizure medication for a limited period of time to see how she responds. We have also scheduled an EEG for early Feb (first available time) to monitor her brain activity which may also provide some valuable information as well. My girl also proved me right once again in the Dr.'s office. During the discussion of her symptoms, I indicated that I felt she was fully aware of what was going on round her and they gave me that "sure she can" look that everyone in my situation learns to identify. When we discussed the side effects of the proposed medications, one of the most common is that they get "edgy" and a bit short tempered (just what I need with the most independent and forceful woman I have ever met). When this came up, I made the comment to please not administer something that sets the anaconda free and Judi busted out laughing. All of the Dr.s and nurses looked at me and I simply responded: I told you she understands. I think there are some new believers.
There was also another first this weekend. The weather was so perfect Monday that I decided to get on my motorcycle and just get away for an hour or so (Judi's caretaker was here so that I could get some errands done). I have always found that this was good medicine when the world started to close in on me. This was the first time I had really set off to just go into "Steve Land" since Judi was injured. I am not sure how it happened, but I found myself on roads that we had ridden together (as doubles or with both bikes). There must have been a lot of irritants in the air that day because I couldn't get my eyes to stop watering and ultimately had to head back home. It did give me some time for some special thanks and prayers as I contemplated how much our world has changed.
Thank you all for your continued support of Judi and our family. Your prayers are the best medicine she can receive and I am sure that we will ride together again very soon. Just FYI, someone asked me how long Judi and and I had been riding together the other day. Our first date together was on a motorcycle and that was almost 31 years ago.
Steve
Sunday, January 3, 2010
2010 - A Year of Promise
Happy New Year to everyone!
I hope that Santa was good to everyone and that you had a chance to spend some quality time with family and friends. I have tried to be candid on this blog, so I am just going to say it was a very difficult time for our little family. We got through it and I am looking forward to a better year in 2010. I am doubly blessed to have Judi as my wife and Jessica as my daughter. Once again, I could never have survived this holiday period without Jess' help and love. 'Nuff said.
Therapy is going very well for Judi. She is gaining a LOT of ground physically and continues to slowly recover mentally. We have stopped using the hydraulic lift to move Judi between her wheelchair and other locations. She is able to stand with assistance to transfer now. This has a bit of a snowball effect for her. The more she stands, the stronger she gets and the more her brain "recognizes" that her left side is there. She is clearly regaining control of her left side and we hope it is only a matter of time before her strength is restored there as well. We are concerned about her left arm due to the contraction that she continues to exhibit. I have spent countless hours trying to prevent it and hopefully it will continue to improve.
In OT, the biggest challenge is keeping her interested. Judi gets a little frustrated with the tasks they ask her to perform because she thinks they are silly (my opinion). I have been working with her to perform the same movements concealed as normal activities and she does great. For example, they ask her to reach out and put a peg in the board, I get her to do the same thing asking for a hug. I compare the two and think she is finally warming up to what they are trying to accomplish.
Speech continues to be up and down for us. She is VERY vocal and continues to get stronger and stronger here. The problem is the neck continues to limit her ability to grow. She is a veritable chatterbox when she is laying down, but when she sits up it is more difficult due to the neck muscle interaction. We'll keep working.
Mentally she is still improving as well. The "yes/no" questioning is definitely getting better. I am starting to wonder if it is more an issue of making a choice as opposed to answering correctly. She clearly struggles when presented with a situation where she has to make a choice. I am not sure if she is struggling with "how" to make a choice or the fear of making the "wrong" choice. Those of you that know Judi well, also know the perfectionist she can be and this could be the real issue. We'll continue to work on this and see if we can refine it further. She has turned into an interesting conversationalist when she sleeps. We believe that she is dreaming a lot and that is a VERY good sign. All of these things point to an increase in mental activity. At times she also moves around a lot so I have to keep a close eye on her to ensure she remains safe.
I am looking forward to great things from 2010 and wish great things for each of you as well. I believe that Judi will make a full recovery with our continued support and prayers. Thank you all again and hopefully Judi will tell you herself very soon.
Steve
I hope that Santa was good to everyone and that you had a chance to spend some quality time with family and friends. I have tried to be candid on this blog, so I am just going to say it was a very difficult time for our little family. We got through it and I am looking forward to a better year in 2010. I am doubly blessed to have Judi as my wife and Jessica as my daughter. Once again, I could never have survived this holiday period without Jess' help and love. 'Nuff said.
Therapy is going very well for Judi. She is gaining a LOT of ground physically and continues to slowly recover mentally. We have stopped using the hydraulic lift to move Judi between her wheelchair and other locations. She is able to stand with assistance to transfer now. This has a bit of a snowball effect for her. The more she stands, the stronger she gets and the more her brain "recognizes" that her left side is there. She is clearly regaining control of her left side and we hope it is only a matter of time before her strength is restored there as well. We are concerned about her left arm due to the contraction that she continues to exhibit. I have spent countless hours trying to prevent it and hopefully it will continue to improve.
In OT, the biggest challenge is keeping her interested. Judi gets a little frustrated with the tasks they ask her to perform because she thinks they are silly (my opinion). I have been working with her to perform the same movements concealed as normal activities and she does great. For example, they ask her to reach out and put a peg in the board, I get her to do the same thing asking for a hug. I compare the two and think she is finally warming up to what they are trying to accomplish.
Speech continues to be up and down for us. She is VERY vocal and continues to get stronger and stronger here. The problem is the neck continues to limit her ability to grow. She is a veritable chatterbox when she is laying down, but when she sits up it is more difficult due to the neck muscle interaction. We'll keep working.
Mentally she is still improving as well. The "yes/no" questioning is definitely getting better. I am starting to wonder if it is more an issue of making a choice as opposed to answering correctly. She clearly struggles when presented with a situation where she has to make a choice. I am not sure if she is struggling with "how" to make a choice or the fear of making the "wrong" choice. Those of you that know Judi well, also know the perfectionist she can be and this could be the real issue. We'll continue to work on this and see if we can refine it further. She has turned into an interesting conversationalist when she sleeps. We believe that she is dreaming a lot and that is a VERY good sign. All of these things point to an increase in mental activity. At times she also moves around a lot so I have to keep a close eye on her to ensure she remains safe.
I am looking forward to great things from 2010 and wish great things for each of you as well. I believe that Judi will make a full recovery with our continued support and prayers. Thank you all again and hopefully Judi will tell you herself very soon.
Steve
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