Wow, sorry I haven't been as active as I had hoped to be. Life can get away from you pretty quick this time of year, especially with the latest developments in my life. Since my last post, I have had two more nerve blocks, one was the same as the others I have had, two injections above the knee in the same appointment, one block on the popliteal nerve and the other on the saphenous, while the block I got on the 29th was done at the ankle, which they just traced around the ankle just under the skin, in an attempt to block all of the superficial nerves in my foot. The block on the 22nd did a good job of alleviating most of the feeling on the outside of my foot, where the pain is worst, but the arch of my foot was somehow untouched by it. The ankle level block didn't take at all, which was a real bummer, as we were heading into the weekend that my wife and I had planned to knock out as much of the holiday insanity as we could, and to try to squeeze in a nice dinner for my berfday. Well, we got most of our insanity figured out, and we even got to our dinner at Biaggi, it may be commercial, but I love that place.
So, the biggest development-WE HAVE A SET DATE!! I will be trying my first Ketamine infusion therapy starting January 7th. I can't believe how long the days have seemed since the date was finalized last week. Even though Rach (my wife) was the first to bring up the idea of this therapy, she is pretty anxious about it, while I was somewhat skeptical at first, I am super stoked for this to happen. I'm not looking forward to being a slobbering mess, but when I get home, I want to have my first thought be, "I can't remember if I have a banana for my cereal this morning", not "F#%k , I don't want to have to move my foot, this is going to suck."(excuse my language, but that is what I say every morning). The behind the scenes work that we have had to do is one of the key players in my absence from my story telling. I have to have a babysitter that I feel completely comfortable with 24 hours a day, this is going to be the most taxing issue for my close friends and family, especially Rach. If we didn't a small petting zoo at home, she would be able take care of most of this time, but the 2 dogs and 2 cats need their love too, so we will be working on getting people involved to help her out.
I can't remember if I mentioned this before, but the meds used for my nerve blocks are ropivacaine and dexmedetomidine, at times, epinephrine has been added as well to extend the efficacy of the injections. Believe it or not, the injections above the knee, when they have used the blunt needle and jab through layers of tissue, are much less painful and less bloody than the one at the ankle, where they use a typical injection needle. I have had one of the most patient and helpful anesthesiologists helping me through this, that or she is eager to write a paper on me.When my PCP put in the consult to the Pain Clinic, they moved my appointment up on their list and after seeing my foot, they had me scheduled for my first block that afternoon. I was even more uneasy about this diagnosis than I was when the great Dr. Pat York told me that was my problem and told me what he knew of it. Nothing can explain the feeling of the first block, I feel like I'm confessing my drug addiction here, but I couldn't wait for the next injection. With a few weeks missed for various reasons, I have gotten the block every Thursday since June, and another recovery line, none have been as good as the first. I was up and walking for the whole weekend and never thought about the foot, one weekend I got brave enough to try to ride my bike, it was a mistake, but at least I felt good enough to give it a try. For someone that suffers this syndrome, dystrophy, disease or whatever the world decides to call it, and has not had a nerve block injection, I would definitely look into the possibility of getting it done, even a weekend of relief is worth the time and effort many times over. I won't lie though, at least for me, the first pangs when the pain returns are some of the sharpest and worst pains I have throughout the week, just have to ask yourself if it's worth it, for me it most definitely is.
On a more selfish note, I encountered 2 people today that thought they would like to see if their foot fit in their mouth. Taking the stairs at work from the basement back to the 1st floor, a female employee at the VA (I hold the terms woman or lady because her character didn't bring either words to mind) was approaching the same door to the stairwell that I started through. Seeing that she was coming, I held the door for her, upon reaching the door, her first comment wasn't thank you, it was "Well, you're moving pretty slow these days, huh? Haha." With my typical "sometimes" response, holding my cane steady, I allowed her to hit the stairs first, upon reaching the top of the stairs she held the gate for me, being close to the bottom I told her not to wait, but this time she stated, "We all know gimpy people need all the help they can get". I know I took more offense to this than necessary, but my response was, "Most of us prefer the term disabled vet." To which the apologies started to pour out like Niagara Falls. I walked past and through a door behind her and let it shut in her face, I don't always let things get to me, but this somehow made it through and I wasn't about to attempt to make her feel better about her comments. Being an employee at the VA, one should have a little more tact than that when dealing with someone you don't know who has an obvious disability. The second incident was in a clinic room, I was helping another nurse by giving a flu shot. As I entered the room, the patient's comment was "Ah na, you got me the broke nurse?" As soon as he saw the 'Eat sh!t' look, he had the same slew of apologies. I couldn't even respond to this one, I just told him to get his arm ready and I gave him the shot. Human ignorance seems to have exploded to an entirely ridiculous level. What ever happened to the days of showing people respect? I know I let myself get too bothered by these two, but I shouldn't be required to wear kid gloves every time an ignorant ass makes a comment or performs an act that deserves repercussions.
Oh hell, how could I have forgotten this? The Thanksgiving fiasco at the local mall:Shoplifter is caught, resists arrest, someone throws a trash can, people yell shooter, the entire mall becomes a stampede of hysterical shoppers and shoplifters (opportunists love these-people grabbing an armful of clothes off of the racks and running out of the store), people are turned into the human Mufasa (nobody died or was injured, relax) and Omaha has proven once again, that as hard as we try, there will always be someone hellbent on ruining what should be a mostly uneventful evening. Prior to all of this, my wife and I were with the kids, in Younkers, she wanted to find a pair of boots for her and my daughter, a sweater, and she wanted me to look at a scarf. I suggested that we split up to save time, lucky for us, she wanted me to see the shirt she wanted, so we stayed together. We got to the scarf section, I changed into one of the store's coats, and was trying on the scarf as this all went down. Rach being Rach, got the kids down and was starting for the door with them. I stayed where I was, checking the area, looking for anyone that was hurt and trying to see if there was a credible threat, or if it was standard idiocracy. This ROYALLY pissed off the family, who were all outside expecting me to pop out any time. After Rach's second reentry to get me to come out, we walked around the mall to the car. There was a lady in her car trying frantically to reach her kids, I can't describe the horror in this lady's eyes, but thankfully, after an eternity, she spoke to each of her kids and they were fine. Lesson learned?:As long as there is a way to ruin a good time, you can bet that someone is doing their best to be that guy.
06 December, 2012
19 November, 2012
Things remembered.
When I think back to when I broke my foot, I can still remember the horror I felt when I was told that I would most likely not be able to have the career in the Army that I have always wanted. I was shining my boot one night and the troop commander approached me and asked what I planned to do after my discharge. I looked at him and told him that my career wasn't over yet, I still wanted to fight and once my foot healed, I would be back in full gear and ready to give hell. We talked for a while and when we were done, I honestly believed that I would be back in my unit with the guys I had trained with, sweating out the days and patrolling whatever site we were assigned to. As my unit shipped out without me, I began to see the truth. Every time I would think my foot was healed and I would try to run on it to try to keep fit, it would break once again and I had to start the whole process all over. Finally, I was taken to the med board, they told me it was time to hang it up. I lost it, the idea of giving up my dreams of one day wearing the uniform of a warrant officer, feeling the honor of knowing that I had done my duty and served with the best people this nation could ask for, destroyed me. This was the most humbling experience I had ever encountered, going in thinking that I would work my way through the ranks and become the person I knew I should be, only to be told that a broken foot would end my career before it even began, stripped every bit of confidence I had.
In 1994, I lived in one of the not-so-great parts of Omaha. I used to ride my bike to a friend's a few blocks away to get a ride to school and would ride home with one of my teammates after practice. On a Wednesday in August, I was going to pick up my bike and was jumped en route. I was bad enough that I was hospitalized, I don't remember the day I was discharged but the one day I remember, a nurse was talking to me and telling me it was Friday. I tell this story because it relates back to my sister's comment about my "angry white boy" music. I can say with certainty that I was a pissed off teen for some time.
The first time I met my friend Brandon was on his birthday, it was in October 1994, just over a month since I was jumped, we were at a picnic our parents had dragged us to. The first thought through my mind when I saw him was that I wanted to kick his ass, I didn't know a thing about him, other than he wore all black and I didn't like him. Once I saw that he was there with a very good family friend who turned out to be his stepdad, I put the thought aside and tried to be sociable. We ended up being good friends and have been for 18 years, I don't know why he stuck around, if you ask him, he will tell you that I was an asshole. The next time I was to see him was my birthday in December 1994, the lucky day for me, I was being moved out of the neighborhood that I was raised in, to one that, in my mind, was full of people that didn't deserve to breathe. His lucky day because he got to help us move out of the POS house we lived in. I remember being in a crappy mood because I still had my black eye and I was moving out of there, even if it was a crappy house in a crappy neighborhood, I wasn't looking forward to moving to another area where I wouldn't be able to continue in the school that I really liked. This attitude continued for quite some time and ultimately led to me ruining any chance I would have of going to any of the military academy, which was one of the excuses I used to make it easier for me to hate that school and drop out.
I spent most of my time working and being a dumb teenager, not causing major trouble, but not being a model citizen. Brandon's mother was a bit smarter than me and tried to limit any time he spent with me, I think she saw me as a bad influence, she might have been right, if he had been a person with any less character. So, when I wasn't hanging out with him, I found other friends that liked to do stupid crap. Lucky for me, I didn't like to do as much stupid crap as them and started to separate from them.
Around this time is when I met my ex. Long story short on that-she got pregnant, we married, Kyle born in October 2000, 9/11 happened, I toyed with the idea of the military again and in 2003 joined the Army. Liking the idea of getting to play with all of the boom sticks, I joined as a Cavalry Scout, best MOS to start with if you ask me. Aaannd, we're back to me breaking my foot. Shortly after I got home, we bought a house and just a while later she was again pregnant. I got my CNA just after my daughter was born in 2005, I was working during the day M-F as a local truck driver and weekends as a CNA, in addition to going to school at night M-F, getting prereqs out of the way for nursing school. By December, I couldn't work that load anymore and started full time evenings at a nursing home. Things hadn't been going well for a long time, but in 2007, things started getting bad between us and in June, I decided to move out.
I started at a hospital in July, working on the cardiac floor. Thinking that I would like being single for a while, I was able to have my kids when I didn't have school or work and could have fun without the tension of the relationship around us. Things were going well, work was good, classes were interesting, and time with the kids was great. Apparently being single didn't work for me, in late September, early October, I met a girl named Rachel. I don't know how to explain it, but she hit something inside me that I hadn't felt before, and I couldn't resist the urge to spend time with her. Her twisted sense of humor, her absolutely beautiful eyes and smile all made me feel like a school kid chasing after the hot girl of the school. I won't lie here, no point since I have already told her, the first thing I noticed about her was her butt, and it is still my favorite. As one might guess, her coming into my life created quite a bit of turmoil with the ex, I know that it wasn't long after I left her, but I can't help how things turned out, I was and will always be insane about Rach. She has been so much more than I could have asked for. She was a 23 year old single girl, living in her own one bedroom apartment with her cat. From the time she met the kids, she was doing all she could to help them adjust to their new situation and make sure that we all kept a strong bond. I owe her my life and I'll spend the rest of it trying repay my debt.
Rach and I were married in May 2011, not counting the births of my children, that was the best day of my life. Everything leading up to the wedding was chaos, like most are. The title of this post came to mind as I was looking at the wine box that I built for our wedding day, it has two wine glasses that we had engraved from the 'Things Remembered' store, we spent too much money in that place, most of the wedding party got their gifts from there as well. Minus the cakes, with the help of a few friends and family members we did all the coordination or construction of all things needed, but we worked on everything together, which I think made it all worth more than if we had paid someone for it all. We spent the night dancing, making rounds talking to everyone we could, a great friend of ours shared her beautiful voice and sang to us, our dance that we had been working on went great, and we had a great time with our friends and family. The honeymoon in Orlando was a mix of good and bad, her feet were hurting, the hotel was less than charming and we didn't do enough research before we went, so other than the parks, we had an adventure with nearly every outing. The good was the times we had at the parks, that we had a good time getting lost on our adventures (see: Biolab Road Florida) and spent time with some amazingly fun family of hers that live in Florida. That trip is the last time Rach remembers me being happy. Shortly after our return home, the pain started in my foot and has continued to increase its intensity.
To attempt to describe the climate of our house for the first 7 or 8 months would take too long, let's just say that I'm amazed she still wears her ring and has stuck with me through it all. Knowing Rach, having her by my side and pushing me along, and knowing that she is trying hard to keep my head above water, while also shouldering the burden of those things I can no longer do, has proven to me that I made the right choice when I proposed at my pinning ceremony (nurse rite of passage). If I didn't know Rach, I might still be wondering what the hell is wrong with my foot, her friend Dr. Pat York is a podiatrist and when I went to see him, he diagnosed me almost immediately based on symptoms we told him and his visual assessment, I can't thank that man enough. Through a mixture of meds and a learned ability to finally talk out some of our issues rather than turn them into a massive fight, the climate seems to have improved, but could still be better.
So, this turned into a long winded summary of some portions of the last 18 years of my life, it's amazing how this outlet can bring so much to mind. I know that we've all had our ups and downs, for some reason, I have always had a hard time pushing mine aside and moving on, I guess I am hoping that this blog does for me what I have not been able to do before. The nights of having the violent dreams, no sleep and waking up in pools of sweat would not be sorely missed if this does the job. I told carrue that I would be posting links that have come from either my wife or Dr. Haynes-Henson, there are some hopeful treatments mentioned in some, please feel free to check them out. Good night all, or good day, have a wonderful day.
In 1994, I lived in one of the not-so-great parts of Omaha. I used to ride my bike to a friend's a few blocks away to get a ride to school and would ride home with one of my teammates after practice. On a Wednesday in August, I was going to pick up my bike and was jumped en route. I was bad enough that I was hospitalized, I don't remember the day I was discharged but the one day I remember, a nurse was talking to me and telling me it was Friday. I tell this story because it relates back to my sister's comment about my "angry white boy" music. I can say with certainty that I was a pissed off teen for some time.
The first time I met my friend Brandon was on his birthday, it was in October 1994, just over a month since I was jumped, we were at a picnic our parents had dragged us to. The first thought through my mind when I saw him was that I wanted to kick his ass, I didn't know a thing about him, other than he wore all black and I didn't like him. Once I saw that he was there with a very good family friend who turned out to be his stepdad, I put the thought aside and tried to be sociable. We ended up being good friends and have been for 18 years, I don't know why he stuck around, if you ask him, he will tell you that I was an asshole. The next time I was to see him was my birthday in December 1994, the lucky day for me, I was being moved out of the neighborhood that I was raised in, to one that, in my mind, was full of people that didn't deserve to breathe. His lucky day because he got to help us move out of the POS house we lived in. I remember being in a crappy mood because I still had my black eye and I was moving out of there, even if it was a crappy house in a crappy neighborhood, I wasn't looking forward to moving to another area where I wouldn't be able to continue in the school that I really liked. This attitude continued for quite some time and ultimately led to me ruining any chance I would have of going to any of the military academy, which was one of the excuses I used to make it easier for me to hate that school and drop out.
I spent most of my time working and being a dumb teenager, not causing major trouble, but not being a model citizen. Brandon's mother was a bit smarter than me and tried to limit any time he spent with me, I think she saw me as a bad influence, she might have been right, if he had been a person with any less character. So, when I wasn't hanging out with him, I found other friends that liked to do stupid crap. Lucky for me, I didn't like to do as much stupid crap as them and started to separate from them.
Around this time is when I met my ex. Long story short on that-she got pregnant, we married, Kyle born in October 2000, 9/11 happened, I toyed with the idea of the military again and in 2003 joined the Army. Liking the idea of getting to play with all of the boom sticks, I joined as a Cavalry Scout, best MOS to start with if you ask me. Aaannd, we're back to me breaking my foot. Shortly after I got home, we bought a house and just a while later she was again pregnant. I got my CNA just after my daughter was born in 2005, I was working during the day M-F as a local truck driver and weekends as a CNA, in addition to going to school at night M-F, getting prereqs out of the way for nursing school. By December, I couldn't work that load anymore and started full time evenings at a nursing home. Things hadn't been going well for a long time, but in 2007, things started getting bad between us and in June, I decided to move out.
I started at a hospital in July, working on the cardiac floor. Thinking that I would like being single for a while, I was able to have my kids when I didn't have school or work and could have fun without the tension of the relationship around us. Things were going well, work was good, classes were interesting, and time with the kids was great. Apparently being single didn't work for me, in late September, early October, I met a girl named Rachel. I don't know how to explain it, but she hit something inside me that I hadn't felt before, and I couldn't resist the urge to spend time with her. Her twisted sense of humor, her absolutely beautiful eyes and smile all made me feel like a school kid chasing after the hot girl of the school. I won't lie here, no point since I have already told her, the first thing I noticed about her was her butt, and it is still my favorite. As one might guess, her coming into my life created quite a bit of turmoil with the ex, I know that it wasn't long after I left her, but I can't help how things turned out, I was and will always be insane about Rach. She has been so much more than I could have asked for. She was a 23 year old single girl, living in her own one bedroom apartment with her cat. From the time she met the kids, she was doing all she could to help them adjust to their new situation and make sure that we all kept a strong bond. I owe her my life and I'll spend the rest of it trying repay my debt.
Rach and I were married in May 2011, not counting the births of my children, that was the best day of my life. Everything leading up to the wedding was chaos, like most are. The title of this post came to mind as I was looking at the wine box that I built for our wedding day, it has two wine glasses that we had engraved from the 'Things Remembered' store, we spent too much money in that place, most of the wedding party got their gifts from there as well. Minus the cakes, with the help of a few friends and family members we did all the coordination or construction of all things needed, but we worked on everything together, which I think made it all worth more than if we had paid someone for it all. We spent the night dancing, making rounds talking to everyone we could, a great friend of ours shared her beautiful voice and sang to us, our dance that we had been working on went great, and we had a great time with our friends and family. The honeymoon in Orlando was a mix of good and bad, her feet were hurting, the hotel was less than charming and we didn't do enough research before we went, so other than the parks, we had an adventure with nearly every outing. The good was the times we had at the parks, that we had a good time getting lost on our adventures (see: Biolab Road Florida) and spent time with some amazingly fun family of hers that live in Florida. That trip is the last time Rach remembers me being happy. Shortly after our return home, the pain started in my foot and has continued to increase its intensity.
To attempt to describe the climate of our house for the first 7 or 8 months would take too long, let's just say that I'm amazed she still wears her ring and has stuck with me through it all. Knowing Rach, having her by my side and pushing me along, and knowing that she is trying hard to keep my head above water, while also shouldering the burden of those things I can no longer do, has proven to me that I made the right choice when I proposed at my pinning ceremony (nurse rite of passage). If I didn't know Rach, I might still be wondering what the hell is wrong with my foot, her friend Dr. Pat York is a podiatrist and when I went to see him, he diagnosed me almost immediately based on symptoms we told him and his visual assessment, I can't thank that man enough. Through a mixture of meds and a learned ability to finally talk out some of our issues rather than turn them into a massive fight, the climate seems to have improved, but could still be better.
So, this turned into a long winded summary of some portions of the last 18 years of my life, it's amazing how this outlet can bring so much to mind. I know that we've all had our ups and downs, for some reason, I have always had a hard time pushing mine aside and moving on, I guess I am hoping that this blog does for me what I have not been able to do before. The nights of having the violent dreams, no sleep and waking up in pools of sweat would not be sorely missed if this does the job. I told carrue that I would be posting links that have come from either my wife or Dr. Haynes-Henson, there are some hopeful treatments mentioned in some, please feel free to check them out. Good night all, or good day, have a wonderful day.
16 November, 2012
Trying to maintain
I have been fighting the idea of doing this for some time now, I don't try to be the 'Woe is me' guy. This blog is not meant to be my pity party, I am not looking for the "Aw's",
"poor baby's" or any other kind of sympathy, I have finally gotten to a
point that I feel I have to get this out and this seemed like the best
way for me to get it done. If you don't like what you read, please save
yourself the trouble of attempting to start an argument or make this
into whatever you want it to be. This is strictly for me to try to get
some burden off of my chest and see if it makes tomorrow just a little
bit easier to get through.
http://www.anesthesia-analgesia.org/content/111/6/1548.long
I
have worked in the medical field for just over 7 years, I have cared
for people in every stage of life. Many times, I have heard people tell
me that they rated their pain at 10/10, which, according to the chart,
means that they are unconscious due to the level of pain they are in. I
doubted many, especially those that I saw screwing around in their
rooms, or doing the things that a person that claims to be in that much
pain couldn't possibly do. Now, here I am, sitting on my couch, typing
this out with my foot throbbing and hoping the pain and sleep meds take
effect sometime soon. It really sucks to be on the opposite side of
this. I used to look at some people, convinced they were full of crap,
but bit my tongue and took care of them. I'm sure there were times when
some of them could tell I didn't believe that they were in pain, now I
feel like crap because they may have been able to wear a better mask and
hide some of their pain better than I was able to comprehend. I knew
that most people I encountered were legitimately hurting, but some were
(in my eyes, at least) obviously milking the system.
It's hard being the guy that wants to do everything he sees other
fathers doing with their kids, or the guy riding a bike, walking a dog
or enjoying the time hanging out with his wife and friends, but can't
because he knows that, even if it doesn't hurt too terribly bad right
now, everything that he does will be the reason he is even more
miserable than usual later. When he does suck it up and meet up with
friends or do the activities he misses, he feels he has to put on a mask and try to be something he
once was, in hopes of his friends not getting to the point that they
would rather not see him because he is always negative or complaining
about his pain, and he doesn't want their fun to be ruined.
Going to a
restaurant and having to request a normal height table because the high
tops cause his legs to dangle, causing blood to pool in his foot and
bring unimaginable pain when he steps down. When his son or daughter ask
him how to do a certain move in sports and he can't show them because
he can't get push off of his foot well enough to perform the move right.
When his daughter asks him to dance with her and there is no way he can
perform the moves because they require too much use of the foot. When
his daughter is near tears because her father has offered to stand next
to her and help her keep the steps right for a relative dance because
her partner, my lovely wife Rach, isn't there but she is too embarrassed
to have him next to her, so after he has told her that she doesn't have
to have him with her and leaves, she chooses to have her mother's BF
dance with her instead. When his son smiles as he gets an idea for a fun
activity and then the smile vanishes because he realizes that his dad
can't participate. These, among many others, are the things that this
person has had to come to terms with over the course of a year as this
"syndrome" has taken its toll on him and his family. I no longer doubt
the claims of those that say they suffer from chronic pain, I see the
doubt on people's faces as I traverse parking lots, walk in stores or
work through my day, it sucks feeling like I have to reassure myself that my pain is
real, knowing that those who doubt me would give all their possessions
to rid themselves of this condition if they were forced to live through
one day with it.
As this whole thing began to unravel, I slowly
started seeing the activities that I enjoy become more and more limited.
Before I was told my diagnosis, I was sent to primary care, podiatry
and ortho, all with no results. I was so bad at times that I was using
the electric carts at grocery stores. I walked with a cane for nearly a
year. Once I was finally told what my diagnosis is, I was able to get
medication that would hopefully pinpoint the symptoms and enable me to
get rid of my cane, but I have had to submit and resume the use of the
cane again after almost four months without. I forced myself to make
efforts to perform tasks that I had not dared since the onset of this
constant pain. The pain level didn't get much more tolerable, but there
are times that I can stand like I actually have two feet and not think
about it. I still had days that I would have given an eye to have my
cane to help me get through the day at work, I happened to have one of
those days not too long ago. It's amazing how much of a difference a
medication can make. I was almost positive that Tramadol had lost its
effect on me me. I ran out on a Sunday night, Tuesday at work I was
ready to shut the door to my room and smash everything around me, just
in hopes of hiding the pain, if only for a few minutes, that day, I
discovered the value of the Tramadol. The constant burning, stabbing,
tingling, numbness and swelling in my foot has made it nearly impossible
to focus on most any task.
My memory is the worst it has
ever been, minus the week I was jumped, aside from what I have been
told, I still don't remember the exact happenings of that week. I don't
like to admit this, especially because since I met my brother, he has
known me to be his safe for information that he needed to have kept safe
and remembered at any point. I saw my brother and his family for his
birthday party back in October, I was introduced to his mother's friend Dave, and as soon as he said his name, I forgot it, to
be completely honest, I forgot it as I was typing this, my lovely bride
was here to remind me.
I am just lucky that I work for one of the most patient doctors anyone will ever meet, the stupid things that I forget throughout the day, would be unacceptable to almost any other doctor. The number one reason that I have a job in a clinic is to get the vital signs of those coming to see him, I am sure he would say it has only happened maybe once or twice, but I am sure that I have done it more than a handful of times. I have to interrupt many times throughout the day to ask him something about the person he is seeing or about an order he asked me to perform for someone else.
I am just lucky that I work for one of the most patient doctors anyone will ever meet, the stupid things that I forget throughout the day, would be unacceptable to almost any other doctor. The number one reason that I have a job in a clinic is to get the vital signs of those coming to see him, I am sure he would say it has only happened maybe once or twice, but I am sure that I have done it more than a handful of times. I have to interrupt many times throughout the day to ask him something about the person he is seeing or about an order he asked me to perform for someone else.
Sitting here in
my living room, looking at my wife, I can't help but remember the
spring nights that we spent trying to get the timing and steps of our
dance down for our upcoming wedding. She has asked me at times if we
will ever dance again, looking into her eyes, I can do nothing but
attempt to bring her in to my arms, hoping she thinks I am trying to
console her, while really trying to hide my shame that I feel knowing
that she deserves something much better than a 32 year old husband that
can't perform many tasks around the house, and can't take her into his
arms and dance with her throughout the night, like we did in May of
2011. It seems so long ago, all of the changes we have been through
have been so taxing on us both, sadly though, I feel like she has taken
the largest portion of this burden upon herself.
I have
been lucky to have kids and coworkers that are beginning to understand
the limitations I now have. The kids went out and raked the leaves, my
son has mowed the lawn since last summer, my daughter is eager to help
in any way she can. I have had coworkers bring patients to me, to save
me from having to walk to the front to get them. I still have a hard
time asking for and receiving help, but as the pain continues to
increase I have had to learn to be more accepting of the help and more
up front about my limitations.
When I wake up multiple times a
night, I sit and wish it was just a dream and I will really wake up to a
life of normalcy. No matter how many times I tell myself that it will
get better, the sleepless nights and pain filled days are a brisk
reminder that this is reality and it's here to stay. I keep thinking
about a comment my sister said about my "angry white boy music", she is
right, I have always listened to that kind of music, especially over
this last year, I don't listen to much other than that type of music. I
have grown to be an angry person, I have felt that it is somewhat normal
for a person to be more than angry about the situation I am in. The
statement "you still have your health" or "it could be worse", only
serve to bring about even more anger. I don't want someone that isn't in
my shoes, experiencing the feelings I have daily, to tell me that my
pain is not worth getting upset about. If you have the nerve to tell a
person that they are not in that much pain, yet you have never had to
live one minute of your life like they do, please keep those comments to
yourself, they really only serve to piss the person off and inspire them
to create a distance with you. Oh, and the childish "gimpy. hopalong,
limpy" and other comments, could get you much more of a reaction than
you expect, especially if they are having a day like some I've had
recently.
At my most recent appointment with my PCP, Rach informed him that she has noticed a vast difference in the size of my calf muscles. My right leg has remained the same or maybe a little bigger, whereas my left has began to atrophy. Not having noticed this before, it was a bit of a shock, but it did explain why my left sock was always falling down more than the right. While sitting with Dr. Ehlers, we discussed the treatment plan and possible outcomes of each treatment discussed. I thought I knew that this was a lifelong issue that I would have to deal with, but when he cut the BS, looked me in the eye and stated that RSD will not simply go away and I'll have it the rest of my life, I just about lost it. Here I am, about to turn 33 and I am told that there is pretty much no way I will ever be able to do the things I have missed out on throughout the progression of this syndrome's hold on me.
At my most recent appointment with my PCP, Rach informed him that she has noticed a vast difference in the size of my calf muscles. My right leg has remained the same or maybe a little bigger, whereas my left has began to atrophy. Not having noticed this before, it was a bit of a shock, but it did explain why my left sock was always falling down more than the right. While sitting with Dr. Ehlers, we discussed the treatment plan and possible outcomes of each treatment discussed. I thought I knew that this was a lifelong issue that I would have to deal with, but when he cut the BS, looked me in the eye and stated that RSD will not simply go away and I'll have it the rest of my life, I just about lost it. Here I am, about to turn 33 and I am told that there is pretty much no way I will ever be able to do the things I have missed out on throughout the progression of this syndrome's hold on me.
People try to tell me that I shouldn't let my pain
rule my life, I don't waste my time trying to explain to them that I
have tried nearly every sort of distraction, suppression and medical
device/practice/exercise that has been mentioned, all to know avail.
Some might make the pain more tolerable than going without, but most of the
time taken to perform such activities is longer than the relief brought
by them. I have been lucky to have a team of physicians who are doing as much research as Rach has been, to try to find a more effective, longer lasting treatment or therapy. I have been receiving nerve block injections in my knee since June. The meds used are Ropivacaine, epinephrine and Precedex, when they fully surround the Saphinous and Popliteal nerves just above the knee, I get at least 2 days relief, sometimes up to 4; sometimes they are unsuccessful and the only thing I get out of having endured the joy of the injections is numbness from the knee to just above the ankle.
So, this is my blog, my place to spill what comes to mind. Please, feel free to leave comments, I do hope to post treatments and results as they come. If you know anyone with RSD or CRPS, let them know that this exists, maybe they might find some information useful.
Thanks
Jim
http://www.rsdfoundation.org/en/ketamine_emails.htm
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