DISCLAIMER: This is not meant to hurt anyone's feelings. It is not an attack. THIS IS HOW I FEEL. THESE ARE MY OPINIONS AND EXPERIENCES. You can't change that.
Since many people responded to my previous post in a way I half expected (dared to hope wouldn't), I would like to remind everyone who reads this that this is a blog about MY life, MY experiences, MY views, MY opinions. None of which is something that you can affect with words. So, I'd like to explain something about having depression and a borderline personality ... mothering them will not work. Telling them things aren't so, will not work. Giving them an "open door" will readily be ignored. And again, I am not saying this to hurt people's feelings. I'm stating the truth. It forces me to withdraw further.
I've spent my entire life reaching out, and floundering. This is something I struggle with daily. I've tried initiating friendship, I've tried carrying on friendship, I've tried being a good family member ....in all of these situations, I get walked upon. People lie, people flake, people don't want to be around me, people don't want to do the things I want to do - but when the tables are flipped, they expect me to respond. I'll give an example.
I was acquaintances with someone in college. I really wanted to be her friend; she was a really interesting person and someone I felt I could connect with over a weird interest in serial killers. (Since that is aside from my point, I'll leave you wondering.) One summer, she stayed at school. I called her and asked if she could come help me put together some furniture as my husband and I had just moved and he was working full-time and attending classes. She came over and helped me put together the dining table, the chairs, and a small coffee table. We got to talking about things, and she wanted to be a bone specialist. I explained I had a really interesting book on bones. It told this hilarious story about how Michael Jackson thought he could buy the Elephant man's skeleton - which is just wrong on so many levels. I ended up loaning her that book, and another one. On another occasion, we went together to Moscow to have her hair cut since she didn't want to go alone. I thought we were building a good rapport. That year in college, she wanted my support with a major decision she was making. I threw myself behind her because I really believed she could make change happen. Not long after this, she didn't get the position she wanted and I feel she blamed me and my husband for not being her champions. Shortly after this incident, she invited us to a costume party. My husband and I had spent most of the afternoon fighting, so neither of us was in a good mood and we couldn't put costumes together in time. We called and told her we wouldn't be able to make it, that neither of us was feeling very good and that we were fighting, maybe it was best we didn't make her party awkward. This was quite truthful. I think if we had gone, we would have been fighting a lot longer than we could have been. She stopped talking to us much after that unless it was out of convenience. We never received invitations again, when we'd ask her to do something she was always too busy to spend time with us, but not other people, she never returned the books I loaned her, and then a few months later, she moved to the other side of the country to attend graduate school. We've never heard from her again.
This is a pattern in my life. Like it or not, I can give someone every reason to believe me, to trust me, to be kind to me, I can reach out, and then suddenly it's gone. Often without explanation. This remands me to keep to myself. I stop asking anything, and thus I never get anything. I become infuriated when people think they know how to fix me too. I don't want to be fixed. I don't want to understand YOUR view. I don't live in YOUR world because my problems are mine. They stem from me and MY environment. Not yours.
I don't want people's pity. I don't want people's feeble attempts to open doors. (And I say feeble because in MY experiences they have all been feeble, never honest.) I hate to say it, but what I want is someone to just know and then act. Yes, I'm a woman and yes that means in some cases you are expected to be a mind reader. I'm sure everyone can relate to that, but what I am saying here is that I often don't have any idea what the hell it is I need. I don't get it from my family, and I don't get it from the people I know. Often, the only person in the world that can give me anything is my husband. And, he's got enough on his plate - I hate pressuring him to do more. He's been so wonderful that I can't just dump on him anytime I feel like. In fact, he is NOT a punching bag or a trash can. This is something I expect other people to automatically accept without explanation. He can't always be the one.
Finally, my speaking out about my views and my experiences isn't here for you to judge or change my mind about. Things have to change. I'm not some five year old that you can get to believe in Santa, I'm a 30 year old woman with a husband, a degree, a career, 2 home businesses and medical problems. Consolation does not come in the form of "wishing" things for me, or telling me "that's not the way it is." It makes the issue(s) worse. So what is my motivation for doing this?
My getting rid of the poison in my heart, I can be free. THAT, is worth the pain and heartache in the end because at the end of the day, I know who I am and that is all that I want to matter.
Saturday, September 28, 2013
Friday, September 27, 2013
Hi. I'm Kienbock's Girl and I Suffer From Depression.
I remember being lonely from a very young age. I have a younger sister and a younger brother, hoards of cousins, a best friend I've known my entire life, yet I remember feeling lonely most of my life. I can't pinpoint exactly what it stems from, but I know there are many factors that contribute to my bouts of depression.
When I was 16 I contracted mono from sharing drinks with friends at school. Two friends who were dating each other had been sick for a couple of weeks, but didn't know that they had mono. I distinctly recall buying a Sprite one day for lunch, and they passed it between each other. We did this often in my circle of friends. If someone had a drink, you just shared. And, there were like 15 of us or so that this would happen with. That day, I shared it with the two of them, and then went to German class. A week later, my dad had to take me to the doctor because I couldn't stay awake, I wasn't eating much, and I felt like every day I had run a marathon. The clinic gave me that form they always give to patients to fill out asking what their symptoms are; what aches, what hurts, what stings, stabs, pokes, bleeds, etc. I checked a bunch of stuff on the list including headaches, itchy eyes, lethargy, trouble sleeping, trouble falling asleep, trouble waking up, exhaustion, wheezing, achy joints, and more.
When I went in with the doctor, they first gave me a blood test to see if I had diabetes. Then, she asked me why I checked everything off on the form. I told her (in what I am sure was my best 16 year old attitude) the form asked me to list everything I was feeling, so I did. They swabbed my mouth, took my temperature and then took 6 vials of blood from me. After this invasion, she sat down to "chat" with me. She basically told me that I was likely suffering from early forms of insomnia and depression - which are often linked. She told me she was going to prescribe medication to "regulate" my hormone levels.
Not long after this, we found out I was sick with mono. But, my dad starting taking me to a psychologist at the doctor's urging - over something completely unrelated which at some point I may be able to talk about more openly. After some time with the psychologist, she too believed I suffered from episodes of manic depression, but did not believe I was manic - that I just had a mild form that would peak at times. In addition to this, she also agreed that I was suffering from insomnia. I would literally stay up all hours of the night trying to keep my mind off of my life, my family, my problems, and my loneliness.
I was kept on drugs for depression for a few months. I only told 1 person other than my family that I was being medicated. Mostly, because when I was on the medication, I was not the same person. He thought I was acting extremely strangely. I would talk to complete strangers, I made dates with complete strangers, I would drive my car with one leg out the window (no, I'm not kidding), in social situations, I would be relaxed and indifferent, I would say things I normally would never have the gall to say, the list goes on. Ultimately, I hated the person I had become on drugs and so I quit taking them after a while.
In my view of my life, I have been a very inward person. I don't share the deepest parts of me with anyone. Or, if I do, it is a bit here and there and usually they're with my husband. I was brought up by a father who had no nonsense parents, and by a mother who was somewhat crazy but was someone you didn't dare cross. I did not fit either of these molds. I feel like my entire life, I've been nothing but a disappointment in the temperament and character they wanted in a daughter - though I'm sure neither of them could agree on what this would have been. Though I imagine it would be more like my sister for the most part. I have felt like an outsider in my family for as long as I can remember. My name doesn't help matters much. I have a completely unusual name, while everyone else has normal names. And, when I hear in my head my dad or mom saying my name, it accompanies a panic and feeling a tone of extreme disappointment
Not long after I was diagnosed with depression, I realized with my Psychologist that I have a Borderline Personality disorder. If you knew me at all during my middle, high and early college school years you will likely automatically agree. People who suffer from this almost always suffer from depression. They kind of go hand in hand.
My abandonment issues, my emotional state, my impulsivity, my history of intense and highly unstable relationships, my paranoia, my anger, my suicidal thoughts and behaviors.... these are all things that affect how I handle my bone disease. I feel like I have no friends who really understand me - and I am NOT meaning to hurt anyone's feelings with this statement. I feel that people don't make an effort to know me, to be close to me, to care about me ... so I withdraw, I hold back, I behave strangely. Ultimately, my mind says trust no one, but my heart desperately wants to. I cling to the only thing I know I have in the world, but fear that every moment with him is my last - no matter what he does or says to try and make me believe. I truly HAVE gotten better with this over time, I mean, 11 years later and we're still together has definitely taught me something. Every day I feel I can trust him more. But, it's not enough because I don't have an unromantic connection with someone that is like this. I don't have another person in my life that I feel would stand behind me no matter what, that would believe me, that would want me and care for me and love me in the way I need to be loved. My husband knows these feelings that I have all too well. He knows that every time I try to get close to someone or believe a relationship with them is going somewhere - it ultimately fails in every way because I couldn't get what I needed from it. And, I wish that having a husband were enough. Most days, it is. Other days, I can't take care of my home or my animals or myself.
All these issues and more are swirling in my head right now. I really feel like crying because I hold all this in. I don't know anyone other than my husband that knows all these things about me. In fact, I don't really know why I am sharing this with my audience here - the few people that do read this. I believe there is a reason, but I just don't know what. But, I am hoping that by cleansing myself of this fear, this sadness, this depressive behavior - that I can finally start feeling more whole as a person and start to heal in a way I need.
When I was 16 I contracted mono from sharing drinks with friends at school. Two friends who were dating each other had been sick for a couple of weeks, but didn't know that they had mono. I distinctly recall buying a Sprite one day for lunch, and they passed it between each other. We did this often in my circle of friends. If someone had a drink, you just shared. And, there were like 15 of us or so that this would happen with. That day, I shared it with the two of them, and then went to German class. A week later, my dad had to take me to the doctor because I couldn't stay awake, I wasn't eating much, and I felt like every day I had run a marathon. The clinic gave me that form they always give to patients to fill out asking what their symptoms are; what aches, what hurts, what stings, stabs, pokes, bleeds, etc. I checked a bunch of stuff on the list including headaches, itchy eyes, lethargy, trouble sleeping, trouble falling asleep, trouble waking up, exhaustion, wheezing, achy joints, and more.
When I went in with the doctor, they first gave me a blood test to see if I had diabetes. Then, she asked me why I checked everything off on the form. I told her (in what I am sure was my best 16 year old attitude) the form asked me to list everything I was feeling, so I did. They swabbed my mouth, took my temperature and then took 6 vials of blood from me. After this invasion, she sat down to "chat" with me. She basically told me that I was likely suffering from early forms of insomnia and depression - which are often linked. She told me she was going to prescribe medication to "regulate" my hormone levels.
Not long after this, we found out I was sick with mono. But, my dad starting taking me to a psychologist at the doctor's urging - over something completely unrelated which at some point I may be able to talk about more openly. After some time with the psychologist, she too believed I suffered from episodes of manic depression, but did not believe I was manic - that I just had a mild form that would peak at times. In addition to this, she also agreed that I was suffering from insomnia. I would literally stay up all hours of the night trying to keep my mind off of my life, my family, my problems, and my loneliness.
I was kept on drugs for depression for a few months. I only told 1 person other than my family that I was being medicated. Mostly, because when I was on the medication, I was not the same person. He thought I was acting extremely strangely. I would talk to complete strangers, I made dates with complete strangers, I would drive my car with one leg out the window (no, I'm not kidding), in social situations, I would be relaxed and indifferent, I would say things I normally would never have the gall to say, the list goes on. Ultimately, I hated the person I had become on drugs and so I quit taking them after a while.
In my view of my life, I have been a very inward person. I don't share the deepest parts of me with anyone. Or, if I do, it is a bit here and there and usually they're with my husband. I was brought up by a father who had no nonsense parents, and by a mother who was somewhat crazy but was someone you didn't dare cross. I did not fit either of these molds. I feel like my entire life, I've been nothing but a disappointment in the temperament and character they wanted in a daughter - though I'm sure neither of them could agree on what this would have been. Though I imagine it would be more like my sister for the most part. I have felt like an outsider in my family for as long as I can remember. My name doesn't help matters much. I have a completely unusual name, while everyone else has normal names. And, when I hear in my head my dad or mom saying my name, it accompanies a panic and feeling a tone of extreme disappointment
Not long after I was diagnosed with depression, I realized with my Psychologist that I have a Borderline Personality disorder. If you knew me at all during my middle, high and early college school years you will likely automatically agree. People who suffer from this almost always suffer from depression. They kind of go hand in hand.
My abandonment issues, my emotional state, my impulsivity, my history of intense and highly unstable relationships, my paranoia, my anger, my suicidal thoughts and behaviors.... these are all things that affect how I handle my bone disease. I feel like I have no friends who really understand me - and I am NOT meaning to hurt anyone's feelings with this statement. I feel that people don't make an effort to know me, to be close to me, to care about me ... so I withdraw, I hold back, I behave strangely. Ultimately, my mind says trust no one, but my heart desperately wants to. I cling to the only thing I know I have in the world, but fear that every moment with him is my last - no matter what he does or says to try and make me believe. I truly HAVE gotten better with this over time, I mean, 11 years later and we're still together has definitely taught me something. Every day I feel I can trust him more. But, it's not enough because I don't have an unromantic connection with someone that is like this. I don't have another person in my life that I feel would stand behind me no matter what, that would believe me, that would want me and care for me and love me in the way I need to be loved. My husband knows these feelings that I have all too well. He knows that every time I try to get close to someone or believe a relationship with them is going somewhere - it ultimately fails in every way because I couldn't get what I needed from it. And, I wish that having a husband were enough. Most days, it is. Other days, I can't take care of my home or my animals or myself.
All these issues and more are swirling in my head right now. I really feel like crying because I hold all this in. I don't know anyone other than my husband that knows all these things about me. In fact, I don't really know why I am sharing this with my audience here - the few people that do read this. I believe there is a reason, but I just don't know what. But, I am hoping that by cleansing myself of this fear, this sadness, this depressive behavior - that I can finally start feeling more whole as a person and start to heal in a way I need.
Wednesday, September 25, 2013
Cars and Bones and Other Fashionable Rides
After high school I spent a year to myself. I went on an exchange program to Germany, and I worked a full-time job at my uncle's engineering firm. I went to college the next fall at Washington State University. I enrolled in the school of Music as a Music Major. My primary instruments were piano and flute - I've talked a little bit about this before. In the year that I spent away from school, I recovered from my neck injury. It wasn't a fun process let me tell you, but in October of that year, a full 4 months later, during a storm, I hydroplaned into another car who was merging onto the freeway in downtown Seattle. I wasn't going more than 15 miles per hour, but such a low impact jarred my neck badly, and I remember holding onto the steering wheel so tight, that my arms were straight out in front of my trying to brace myself for the whip backwards. They had a tiny scratch on their car, but I was the one worse for the wear.
I sometimes wonder if this is what caused the bone in my hand to collapse - it would make a lot of sense. Low impact car accidents are absorbed by the passengers of a vehicle. Hitting a car at low speed can slip a disc for example.
I'm not a bad driver, but the last few years have made me extremely afraid to be behind a wheel. I haven't had a car accident since this time, so 12 years later when an act of nature called black ice took me careening for around 600 feet downhill into a rock wall planter, I wasn't surprised to find out I have a slipped disc in my lower back. It is highly plausible that such an event as a small car wreck could cause a radial difference to have put intense pressure on my hand bones.
Today, driving is still not enjoyable. I lost that sense of adventure years ago. I mostly drive with my left hand. Things like changing gears, adjusting the rear view mirror and turning the wheel are all obstacles when you have Kienbock's disease. If I do use my right hand, I rely on my fingers for grip and my arm from about my elbow for the control I need of the wheel.
When it comes to other forms of transportation, I seriously have to weigh the cons before I step away. I do own a bike, and I do like to ride it. The problem is though, that using your hands and arms for balance and direction is key. I can no longer ice skate (not that I was EVER any good), roller skate, roller blade, or skateboard/mountain board if I wanted to - not that I do but just as an example. People who fall from these modes of transportation used their hands. It's an automatic reflex if you wobble; you put your hands out. Additionally, I have to rule them out because you cannot trust other people in the world.
I remember in elementary school, every year our school would rent a roller rink and we'd have a huge school party (I went to private elementary, so this was not a large amount of kids). One year, I recall being hit so hard from behind that I fell and was knocked out. My parents wouldn't let me skate for the rest of the day. I mean, think about it. People bump other people, people push and shove, people sidle by.... cars are on the road, animals are on the road, the weather can be drastic, etc. Deciding to go for a bike ride or a rollerblading adventure would just be plain stupid of me. Distractions and invaders are everywhere. I'm not paranoid, I'm practical. It's not worth risking the loss of the use of my hand to go ice skating. If I fell and landed on my hand or arm, I could do some real damage that might not be repairable in ways it would be for other people. I have an extremely thin radius and calcium deficiency because I'm lactose intolerant and have to rely on other foods or vitamins for calcium.
Some people might not understand how this is living life. They'd say if I wanted to do something, to just do it. But, as a realistic and practical person, this is stupid advice. The only way you could do these activities would be in a controlled environment - something many people don't have access to in their everyday lives. As much fun as owning a gym like WSU has, I'd really just rather say it's not worth the risks involved and find other avenues to pursue.
At the end of the day, I never regret my choices to stay out of harm's way. I know I cannot control everything, but I can avoid situations that make it dangerous for my physical health.
I sometimes wonder if this is what caused the bone in my hand to collapse - it would make a lot of sense. Low impact car accidents are absorbed by the passengers of a vehicle. Hitting a car at low speed can slip a disc for example.
I'm not a bad driver, but the last few years have made me extremely afraid to be behind a wheel. I haven't had a car accident since this time, so 12 years later when an act of nature called black ice took me careening for around 600 feet downhill into a rock wall planter, I wasn't surprised to find out I have a slipped disc in my lower back. It is highly plausible that such an event as a small car wreck could cause a radial difference to have put intense pressure on my hand bones.
Today, driving is still not enjoyable. I lost that sense of adventure years ago. I mostly drive with my left hand. Things like changing gears, adjusting the rear view mirror and turning the wheel are all obstacles when you have Kienbock's disease. If I do use my right hand, I rely on my fingers for grip and my arm from about my elbow for the control I need of the wheel.
When it comes to other forms of transportation, I seriously have to weigh the cons before I step away. I do own a bike, and I do like to ride it. The problem is though, that using your hands and arms for balance and direction is key. I can no longer ice skate (not that I was EVER any good), roller skate, roller blade, or skateboard/mountain board if I wanted to - not that I do but just as an example. People who fall from these modes of transportation used their hands. It's an automatic reflex if you wobble; you put your hands out. Additionally, I have to rule them out because you cannot trust other people in the world.
I remember in elementary school, every year our school would rent a roller rink and we'd have a huge school party (I went to private elementary, so this was not a large amount of kids). One year, I recall being hit so hard from behind that I fell and was knocked out. My parents wouldn't let me skate for the rest of the day. I mean, think about it. People bump other people, people push and shove, people sidle by.... cars are on the road, animals are on the road, the weather can be drastic, etc. Deciding to go for a bike ride or a rollerblading adventure would just be plain stupid of me. Distractions and invaders are everywhere. I'm not paranoid, I'm practical. It's not worth risking the loss of the use of my hand to go ice skating. If I fell and landed on my hand or arm, I could do some real damage that might not be repairable in ways it would be for other people. I have an extremely thin radius and calcium deficiency because I'm lactose intolerant and have to rely on other foods or vitamins for calcium.
Some people might not understand how this is living life. They'd say if I wanted to do something, to just do it. But, as a realistic and practical person, this is stupid advice. The only way you could do these activities would be in a controlled environment - something many people don't have access to in their everyday lives. As much fun as owning a gym like WSU has, I'd really just rather say it's not worth the risks involved and find other avenues to pursue.
At the end of the day, I never regret my choices to stay out of harm's way. I know I cannot control everything, but I can avoid situations that make it dangerous for my physical health.
Monday, September 23, 2013
Kleenex and More Deep Thoughts
Today, when trying to blow my nose before using my allergy nasal spray, I grabbed the tissue box on my desk at work. The tissues were not sticking out of the top like they should have been ... they were stuffed down inside still. For some reason, the last Kleenex did not pull out the next. After picking up the box, I tried pinching and grabbing the next Kleenex. Epic fail. After a good 15 seconds of trying to get the darn thing out (and 15 seconds is a long time, took me about 8 tries to get it out), I realized that I can't feel my fingers.
It always escapes me that I can't use my hand. I still get into the mindset that I CAN TOO carry in the bag of groceries, or vaccuum the carpets. There are a few big things that I absolutely cannot do such as scrub things, ride most rollercoasters, or hold on for dear life to the "Oh Shit!" handlebars.
After my first surgery and I came home from the hospital, we video called my family. My sister, her husband and their two kids were staying at my parents' house that Thanksgiving. My siter's very precocious daughter is very much like me. I remember she was sitting on my mom's lap, and we were all talking about the hospital, and the surgery, etc. I was explaining how I couldn't feel my hand, but I could wiggle some fingers pretty good, moving them up and down and bend them slightly. This was a very big deal to me at the time, mostly because I was afraid I'd lost the use of my hand forever. One of the things my mother used to do is try to alleviate heavy issues with humor. Often obnoxious humor. She asked me if I was working on my "bird." It took me a second. "Mom, are you asking if I can flip people off?" If you recall I come from a very devout Christian household where saying crap was a sin. My mom says "Yeah," and shows me her middle finger. She did it right in front of my sister's daughter. I told her that wasn't appropriate. She said "Oh, she's only 3, she doesn't know what it means. Show me your finger!" My mother was encouraging me to flip people off. This was a post-surgery therapy I could live with. Much better than lifting my arm over my head and trying to pump a fist about 10 times.
Losing feeling and range of motion is something I'll live with forever, and is not easily accepted. I'm had these issues for years now, yet when I go to grab that kleenex,or I make an effort to try and flip someone off with my right hand, it's evident. You would think by now that I would be used to this kind of thing.
Showering is easier now, but still difficult. A side effect of surgeries has been an extreme sensitivity to temperature changes, or, conversely, an apparent lack to knowing my temperature. It's weird. I have both worlds. The scar tissue in my arm has built up rather knotted, and it does not like hot water, or cold water when I'm washing my hands or showering. One therapy I used to do was sand at the hand therapist in Kansas City, which is like water therapy. You stick your arm inside what looks like a rolling heater, and it blows sand all over your arm. Some of the things you can do inside it are make repetetive movements with your hand and arm, or squeeze objects. I like the hand motions, and I've transfered that to water. Although my hand and arm do not like hot and col, they really enjoy water. Water breaks down barriers that are evident 99% of the time. I love making swishing motions with my hand and moving my arm gently from side to side anytime i'm in a pool for example. Nothing pops, no tendons twinge over bones and scar tissue, nothing feels completely out of place. But once you remove the water, it's like the kleenex box all over again.
What drives me to be so patient and to only contemplate is my lack of anger with my arm itself. Sure, I'm mad that it took years for doctors to discover that I wasn't a hypochondriac, suer I'm mad that I was born with a bone compensation, sure I'm mad that people treat me certain ways based upon my abbilities - but I don't let any of this stop me. I continue on with my life. I realize that anger gets you nowhere when you can't conctrol the situation. Since I can't control hardly anything involving my arm, I've become an overly patient person with myself. I don't push. I'm the ever driving hammer at the nail.
I don't recall if when I left the office today though, the kleenex I took brought up the next one .... I guess I'll find out tomorrow when I need to take my allergy medication.
It always escapes me that I can't use my hand. I still get into the mindset that I CAN TOO carry in the bag of groceries, or vaccuum the carpets. There are a few big things that I absolutely cannot do such as scrub things, ride most rollercoasters, or hold on for dear life to the "Oh Shit!" handlebars.
After my first surgery and I came home from the hospital, we video called my family. My sister, her husband and their two kids were staying at my parents' house that Thanksgiving. My siter's very precocious daughter is very much like me. I remember she was sitting on my mom's lap, and we were all talking about the hospital, and the surgery, etc. I was explaining how I couldn't feel my hand, but I could wiggle some fingers pretty good, moving them up and down and bend them slightly. This was a very big deal to me at the time, mostly because I was afraid I'd lost the use of my hand forever. One of the things my mother used to do is try to alleviate heavy issues with humor. Often obnoxious humor. She asked me if I was working on my "bird." It took me a second. "Mom, are you asking if I can flip people off?" If you recall I come from a very devout Christian household where saying crap was a sin. My mom says "Yeah," and shows me her middle finger. She did it right in front of my sister's daughter. I told her that wasn't appropriate. She said "Oh, she's only 3, she doesn't know what it means. Show me your finger!" My mother was encouraging me to flip people off. This was a post-surgery therapy I could live with. Much better than lifting my arm over my head and trying to pump a fist about 10 times.
Losing feeling and range of motion is something I'll live with forever, and is not easily accepted. I'm had these issues for years now, yet when I go to grab that kleenex,or I make an effort to try and flip someone off with my right hand, it's evident. You would think by now that I would be used to this kind of thing.
Showering is easier now, but still difficult. A side effect of surgeries has been an extreme sensitivity to temperature changes, or, conversely, an apparent lack to knowing my temperature. It's weird. I have both worlds. The scar tissue in my arm has built up rather knotted, and it does not like hot water, or cold water when I'm washing my hands or showering. One therapy I used to do was sand at the hand therapist in Kansas City, which is like water therapy. You stick your arm inside what looks like a rolling heater, and it blows sand all over your arm. Some of the things you can do inside it are make repetetive movements with your hand and arm, or squeeze objects. I like the hand motions, and I've transfered that to water. Although my hand and arm do not like hot and col, they really enjoy water. Water breaks down barriers that are evident 99% of the time. I love making swishing motions with my hand and moving my arm gently from side to side anytime i'm in a pool for example. Nothing pops, no tendons twinge over bones and scar tissue, nothing feels completely out of place. But once you remove the water, it's like the kleenex box all over again.
What drives me to be so patient and to only contemplate is my lack of anger with my arm itself. Sure, I'm mad that it took years for doctors to discover that I wasn't a hypochondriac, suer I'm mad that I was born with a bone compensation, sure I'm mad that people treat me certain ways based upon my abbilities - but I don't let any of this stop me. I continue on with my life. I realize that anger gets you nowhere when you can't conctrol the situation. Since I can't control hardly anything involving my arm, I've become an overly patient person with myself. I don't push. I'm the ever driving hammer at the nail.
I don't recall if when I left the office today though, the kleenex I took brought up the next one .... I guess I'll find out tomorrow when I need to take my allergy medication.
Saturday, September 21, 2013
Remembering a Walk at Christmas
So if you've been reading my blog or catching up on all the old stories, you recall that we lived in this large home in Germany at the time because my husband was stationed in Mannheim for the greatest 3 years of our lives. And, his parents were visiting us very shortly after my first surgery for Kienbock's. You may also recall that I took very few drugs to help with the pain - largely in part because I hate medicine, but also largely in part because I didn't need it. It did nothing to stop the pain.
I do recall a particular evening just before Christmas. We had spent part of the afternoon walking through our village, and up the mountainside to where the vineyards were so J&S could see the spectacular view we had of the Rhein-Neckar valley. Seriously, spectacular. We could see miles out on good days, and every day we could see Mannheim which was 12 kilometers away. It was a little cloudy, and it had been snowing. We took the dog with us, all bundled up in his sweater. But, he finally started shivering after an hour or so, so we trekked back down and decided to go to the church next door to our home.
To be honest, we had never been inside the church. Mostly, because there was always something going on. Concerts, weddings, funerals, services, it was like a convention center for our village. Anyway, we went down into the church courtyard, and I recall looking at our home from a very different angle. I'd always seen it from our perspective, but from next door I recall thinking "No wonder why all those people keep coming and looking in our windows!"
The church is a catholic church, and inside it was largely lit by candles. There is a black Madonna altar which is said to perform miracles. In fact, the walls of the church were encased with stories and pictures and prayers from locals who had received or were asking for miracles to be performed by the black Madonna. I'm never one to squelch people's stories about religious artifacts - partially because as a human being with a belief in greater things, I too would love to believe that the reason someone didn't die in a car crash was because Christ's mother was watching out for them.
My father-in-law and husband took turns waiting with the dog outside the church so that J&S could have the time to look around as well. We weren't there very long because of our freezing puppy, so we went back to the house where we had hot chocolate and cider. I remember we played a few games, one of which was Blokkus. My father-in-law got the gist of the game after the first round, and decided he'd block everyone early on in the game. It was difficult maneuvering around him, but we managed. And, it turns out he lost very badly. To this day we give him crap about playing Blokkus.
I remember though, that day, my husband convinced me to take some medicine. I can't remember if it was Percocet or hydrocodone ... but I was high as a kite for a few hours on it. It sure didn't take care of my pain, but it improved my mood. It improved my mood so much in fact that we have photographic evidence. At that time in my life, I wasn't too keen on photos. Normally, I like having my picture taken by my husband - not so much by other people, but he manages to capture good moments that I like to remember.
This being one of the few times I ever willingly took medicine outside a hospital to help with the pain, I became a bigger believer in strength of mind. I have other injuries where occasionally medicine helps. For example with bursitis pain, taking some ibuprofen helps alleviate symptoms and inability to keep still. But nothing, I repeat, nothing, gets rid of Kienbock's pain. It's there and you have to live with it every second. I've uncovered ways to ignore it or mask it, but for years I've lived with the pain as if it were part of me and who I am.
Essentially, I own Kienbock's disease. I let it help define me. If I didn't, I'd live a miserable existence. It's like people who are in wheelchairs accepting help. If you don't accept help, how do you expect to get through life happy, and well? You won't. You might not be able to reach for something, but that makes you no less dignified and no less human. We all have hurdles in life. Owning them and dealing with them is the only way to ever get around them. Refusing to will make you unpleasant, and worthless. Simple things like taking walks and playing games helped me overcome the fear and incapacitation of the pain. Being with a husband who has supported me in the best way he knows how has also helped. Relinquishing control will gain you control - if that makes sense to you in some messed up way. Life is all about obstacles. You can either accept them and your reactions to them, or you can drown in them. I choose to accept them.
I do recall a particular evening just before Christmas. We had spent part of the afternoon walking through our village, and up the mountainside to where the vineyards were so J&S could see the spectacular view we had of the Rhein-Neckar valley. Seriously, spectacular. We could see miles out on good days, and every day we could see Mannheim which was 12 kilometers away. It was a little cloudy, and it had been snowing. We took the dog with us, all bundled up in his sweater. But, he finally started shivering after an hour or so, so we trekked back down and decided to go to the church next door to our home.
To be honest, we had never been inside the church. Mostly, because there was always something going on. Concerts, weddings, funerals, services, it was like a convention center for our village. Anyway, we went down into the church courtyard, and I recall looking at our home from a very different angle. I'd always seen it from our perspective, but from next door I recall thinking "No wonder why all those people keep coming and looking in our windows!"
The church is a catholic church, and inside it was largely lit by candles. There is a black Madonna altar which is said to perform miracles. In fact, the walls of the church were encased with stories and pictures and prayers from locals who had received or were asking for miracles to be performed by the black Madonna. I'm never one to squelch people's stories about religious artifacts - partially because as a human being with a belief in greater things, I too would love to believe that the reason someone didn't die in a car crash was because Christ's mother was watching out for them.
My father-in-law and husband took turns waiting with the dog outside the church so that J&S could have the time to look around as well. We weren't there very long because of our freezing puppy, so we went back to the house where we had hot chocolate and cider. I remember we played a few games, one of which was Blokkus. My father-in-law got the gist of the game after the first round, and decided he'd block everyone early on in the game. It was difficult maneuvering around him, but we managed. And, it turns out he lost very badly. To this day we give him crap about playing Blokkus.
I remember though, that day, my husband convinced me to take some medicine. I can't remember if it was Percocet or hydrocodone ... but I was high as a kite for a few hours on it. It sure didn't take care of my pain, but it improved my mood. It improved my mood so much in fact that we have photographic evidence. At that time in my life, I wasn't too keen on photos. Normally, I like having my picture taken by my husband - not so much by other people, but he manages to capture good moments that I like to remember.
This being one of the few times I ever willingly took medicine outside a hospital to help with the pain, I became a bigger believer in strength of mind. I have other injuries where occasionally medicine helps. For example with bursitis pain, taking some ibuprofen helps alleviate symptoms and inability to keep still. But nothing, I repeat, nothing, gets rid of Kienbock's pain. It's there and you have to live with it every second. I've uncovered ways to ignore it or mask it, but for years I've lived with the pain as if it were part of me and who I am.
Essentially, I own Kienbock's disease. I let it help define me. If I didn't, I'd live a miserable existence. It's like people who are in wheelchairs accepting help. If you don't accept help, how do you expect to get through life happy, and well? You won't. You might not be able to reach for something, but that makes you no less dignified and no less human. We all have hurdles in life. Owning them and dealing with them is the only way to ever get around them. Refusing to will make you unpleasant, and worthless. Simple things like taking walks and playing games helped me overcome the fear and incapacitation of the pain. Being with a husband who has supported me in the best way he knows how has also helped. Relinquishing control will gain you control - if that makes sense to you in some messed up way. Life is all about obstacles. You can either accept them and your reactions to them, or you can drown in them. I choose to accept them.
Wednesday, September 18, 2013
Why I Never Play Football
I don't consider myself a cathartic person. However, the reality is, outwardly, I am cathartic, but inwardly I refuse to let myself fall apart. I compartmentalize, I handle, and I suck it up and get on with it. Nevertheless, it would not be fair to share this blog and fail to share important personal experiences.
I remember in high school that I had a boyfriend that I was crazy about. He was my first true love. We were together for little over a year, and I absolutely fell apart when he decided he did not want to be with me anymore. I remember absolute devastation. I was so distraught over how it ended, many crazy things happened. A neighbor (whom I am still friends with to this day) and another dear friend of mine witnessed my ex attempt to attack me at my home one evening. After that, I completely lost it. We couldn't be around each other in school, our friends had to choose sides (I got the short end of the stick), my mother tried to hospitalize me, I made up crazy lies and told them to everyone, and I remember out of spite dating someone my ex had accused me of flirting with and trying to cheat with; it went on. I really lost my mind over the emotional and verbal abuse I endured at his hands. It took me months to repair the damage he did to me. Many people never truly knew what our relationship was like, but it was traumatizing. (But to be fair, I did my share of damages.)
I ended up running away from home many times. Partially because of the relationship drama, and partially because my home life at the time was hostile. I lived temporarily with an aunt and uncle who I always babysat for; I lived with friends, and eventually the person I dated in my bout of spite. Just before the school year ended, the band had a barbecue at a local park. It was tradition, and graduating seniors got to do silly stuff. So, I drove my new boyfriend to the picnic where my old boyfriend and his new girlfriend (who I might add did not like me in the least) dominated the scene. We decided at some point that afternoon that we were going to play touch football. It was decided that the girls would be VS. the guys. After the first few touchdowns, we girls decided to try to play smarter. We coordinated in a huddle and decided that each girl would pick a person, and break the rules and tackle him. We all picked a guy and broke the huddle. One of the other girls forgot who her tackle was, and we ended up running to and jumping on the same guy. My tactic was to go for his hips - I was a powerful little stick and I believed I could take him. The other girl decided to jump right on his torso as he was running forward and he lost his balance. They both fell, I came down hard on my hands, and the girl landed on my head.
My neck snapped 3 times and I blacked out.
I remember coming to and there was laughing. The people I had thought were my friends had believed I was faking, my ex being the ringleader saying to leave me there, that I was faking. They took his word for it and went off to have lunch. I don't care if these people read this either, I think what they did was rotten.
The guy and girl both stayed there with me. They asked me questions like what did I feel like. I remember feeling extremely funny. Numb. I stated that I heard my neck snap exactly 3 times - that detail I will ever forget. Then, I said I couldn't feel the left side of my body. Instead of calling 911, my boyfriend at the time called his dad and had him come pick us up. I couldn't really move well. I was dizzy, nauseated, and I felt extremely detached from myself. I remember waiting for our ride, and my ex berating me, saying I was definitely faking and that I just wanted attention. I sat there and swallowed all the hate they threw until the car pulled up to the park.
They laid me on the back seat and drove me to the hospital. At the hospital, I waited, laying on the backseat unable to move. Paramedics came barreling out of the hospital yelling about moving me and not dialing 911. They brought one of those plastic rescue boards out, and attempted to slide it under me. It didn't work so well, but they managed to have slide and pull me onto their board. The strapped me to it in a medieval fashion with this huge contraption over my head. My parents who I was estranged from at the time were called by the hospital and they were asked to come down and be with me. They did many tests, x-rays, needle poking, and morphine. I was there around 12 hours before they sent me home.
From this moment on, catharsis became a dying art. I learned to be stronger. No more catharsis.
It was not until years later when Dr. P in Germany asked if I had had any prior trauma. Some medical doctors theorize that Kienbock's disease might be attributed to accidents such as falling on your hands or arms. True, I did have a pre-condition with a radius that grew too long, but the health of my hand and arm rapidly deteriorated after this accident back 12, almost 13 years ago now. I need to let go of this and stop being angry about it, but it's difficult. Doctors thought I may have broken my neck and had completely disregarded any other possible trauma having occurred to my body. It is hard to think about it to this day - considering I am hurt by many things that had occurred at this time in my life. The use of your hand is more important than spoiled friendships, ruined loves, severe depression, and humiliation. I keep trying to convince myself of this - every day. Each day I feel like it is living with the enemy in my right arm/hand. It pales the comparison to trivial matters of heartache. Your heart can mend itself. Kienbock's disease destroys part of your body.
I remember in high school that I had a boyfriend that I was crazy about. He was my first true love. We were together for little over a year, and I absolutely fell apart when he decided he did not want to be with me anymore. I remember absolute devastation. I was so distraught over how it ended, many crazy things happened. A neighbor (whom I am still friends with to this day) and another dear friend of mine witnessed my ex attempt to attack me at my home one evening. After that, I completely lost it. We couldn't be around each other in school, our friends had to choose sides (I got the short end of the stick), my mother tried to hospitalize me, I made up crazy lies and told them to everyone, and I remember out of spite dating someone my ex had accused me of flirting with and trying to cheat with; it went on. I really lost my mind over the emotional and verbal abuse I endured at his hands. It took me months to repair the damage he did to me. Many people never truly knew what our relationship was like, but it was traumatizing. (But to be fair, I did my share of damages.)
I ended up running away from home many times. Partially because of the relationship drama, and partially because my home life at the time was hostile. I lived temporarily with an aunt and uncle who I always babysat for; I lived with friends, and eventually the person I dated in my bout of spite. Just before the school year ended, the band had a barbecue at a local park. It was tradition, and graduating seniors got to do silly stuff. So, I drove my new boyfriend to the picnic where my old boyfriend and his new girlfriend (who I might add did not like me in the least) dominated the scene. We decided at some point that afternoon that we were going to play touch football. It was decided that the girls would be VS. the guys. After the first few touchdowns, we girls decided to try to play smarter. We coordinated in a huddle and decided that each girl would pick a person, and break the rules and tackle him. We all picked a guy and broke the huddle. One of the other girls forgot who her tackle was, and we ended up running to and jumping on the same guy. My tactic was to go for his hips - I was a powerful little stick and I believed I could take him. The other girl decided to jump right on his torso as he was running forward and he lost his balance. They both fell, I came down hard on my hands, and the girl landed on my head.
My neck snapped 3 times and I blacked out.
I remember coming to and there was laughing. The people I had thought were my friends had believed I was faking, my ex being the ringleader saying to leave me there, that I was faking. They took his word for it and went off to have lunch. I don't care if these people read this either, I think what they did was rotten.
The guy and girl both stayed there with me. They asked me questions like what did I feel like. I remember feeling extremely funny. Numb. I stated that I heard my neck snap exactly 3 times - that detail I will ever forget. Then, I said I couldn't feel the left side of my body. Instead of calling 911, my boyfriend at the time called his dad and had him come pick us up. I couldn't really move well. I was dizzy, nauseated, and I felt extremely detached from myself. I remember waiting for our ride, and my ex berating me, saying I was definitely faking and that I just wanted attention. I sat there and swallowed all the hate they threw until the car pulled up to the park.
They laid me on the back seat and drove me to the hospital. At the hospital, I waited, laying on the backseat unable to move. Paramedics came barreling out of the hospital yelling about moving me and not dialing 911. They brought one of those plastic rescue boards out, and attempted to slide it under me. It didn't work so well, but they managed to have slide and pull me onto their board. The strapped me to it in a medieval fashion with this huge contraption over my head. My parents who I was estranged from at the time were called by the hospital and they were asked to come down and be with me. They did many tests, x-rays, needle poking, and morphine. I was there around 12 hours before they sent me home.
From this moment on, catharsis became a dying art. I learned to be stronger. No more catharsis.
It was not until years later when Dr. P in Germany asked if I had had any prior trauma. Some medical doctors theorize that Kienbock's disease might be attributed to accidents such as falling on your hands or arms. True, I did have a pre-condition with a radius that grew too long, but the health of my hand and arm rapidly deteriorated after this accident back 12, almost 13 years ago now. I need to let go of this and stop being angry about it, but it's difficult. Doctors thought I may have broken my neck and had completely disregarded any other possible trauma having occurred to my body. It is hard to think about it to this day - considering I am hurt by many things that had occurred at this time in my life. The use of your hand is more important than spoiled friendships, ruined loves, severe depression, and humiliation. I keep trying to convince myself of this - every day. Each day I feel like it is living with the enemy in my right arm/hand. It pales the comparison to trivial matters of heartache. Your heart can mend itself. Kienbock's disease destroys part of your body.
Saturday, September 14, 2013
So Long Castie!
When we had returned from our excursion into the German Alps, I had an appointment with Dr. P to have my cast removed. We planned to take the whole afternoon/evening to stay in the Pedestrian Zone downtown Heidelberg, and to have dinner at one of our favorite restaurants in Germany: Indian Palace. So, we all walked down through our tiny town to the train stop. We had a lovely train that came every half hour during the weekdays, and every hour on weekends. It took us on what is called a Rundfahrt. It went in a circle from Mannheim to Heidelberg, crossing both the Rhein and the Neckar. We paid for our group ticket and took the next train into Heidelberg. Our train stopped right in front of Atos Klinikum, if you recall which is directly across from the entrance to the Pedestrian Zone.
I remember I wasn't feeling good at all when we got to Atos, and we had to run around looking for a bathroom. All the bathrooms on Dr. P's floor were in use, so I finally found one on the floor below. It was literally a closet. I mean, the average sized human could barely turn around in it, and have space to wash and dry hands. When we ran back to the office, they had already called my name and shunted me into an exam room. One of the girls that had come to put on my cast came in with an electric saw.
Now, you can tell me how safe these saws are, and demonstrate it on your bare skin all you want.... but I blanched. With how close that saw was coming to my skin, I kept freaking out and repeated "Stop! Stop!" I don't know if the girl had massive amounts of patience, or was just entertaining me, but she would stop. The saw generated so much heat; it was burning my arm underneath the cast. We stopped and started many times before she could crack open the cast and let my arm out. Dr. P came in and told me to go over to the X-ray clinic and get some pictures taken. So, we left the office and walked across the hall to radiology. J&S were sitting outside in the hallway in some chairs waiting for us. We told them I had to get some pictures, and talk to the doctor and then we could leave.
I recall that this visit with radiology was none too pleasant. When a little blond lady took me into the room she tried manipulating my hand and arm in ways that made me want to scream and slap. I remember there was this pedestal in the middle of the room instead of a huge table like you'd normally see. She brought over this step ladder, and would angle me around the pedestal in awkward positions. The x-ray machine was mounted directly above the pedestal, and she'd pull it all the way down. If I had flinched, I probably would have whacked the machine good. After a good 10 minutes of grabbing my hand and angling it this way and that, she had me sit out in the hallway by J&S and wait for the prints. Surprisingly, the entire ordeal took less than 30 minutes from beginning to end, walking in to radiology, having my x-rays, and then receiving my prints.
We hustled back into Dr.P's office and back into the exam room. He came in shortly after and said that things were looking a little better, that the stress on my hand bones had been drastically reduced. He gave me a "prescription" to take downstairs to the Pharmacy for a new brace. He said that I was to wear this brace 24/7 for at least the first few months, but let my arm have some air time a little every day. He said I had to sleep with it on. Still no lifting, cleaning or driving. But, he said once my wound healed and the scabs fell off, I could fully immerse my arm in water again.
So, we left the office and we all went down to the museum-like first floor where we walked into the Pharmacy. The lady that took my note said in really quick German that we needed to go to the shop across the hall. Okay.... the shop across the hall was like a gift shop. My husband just shrugged and we went into it, and found that there was a bundle of people on the wall facing the street that were setting people up with bandages, braces, etc. So, we took my note to the first available person, and they told us to wait. It was quite a long wait. Turns out, they had to contact our military insurance to make sure that I could receive this special brace for my arm. There was a whole debacle over it that my husband tried to handle, but we mostly did not understand what they were saying to us ... but we got the brace after about 30 minutes so I guess no harm, no foul! The fitted it on me, and told me not to wrap it too tight. Then, they gave me this interesting receipt. By interesting, I mean this stupid brace cost 80 Euros! At that time, that was about $120 or so. I couldn't believe how expensive this stupid thing was!
My brace is blue blue, with green piping, and red interior. It is not in the least attractive, and goes with absolutely nothing I wear. Or anyone would wear. I still use this brace today. It has a large metal bar insert that is to shape my bone and hold it in place, and Velcro straps that keep my wrist from moving. It's fabulous to sleep it, but took a lot of getting used to. It's hot, sweaty, and not at all breathable so it can start to stink rather quickly which means you have to wash it regularly.
So, Castie, you are no more. Fortunately, I now do not have to worry about itches and showering. The clunker you were ... will not be much missed.
I remember I wasn't feeling good at all when we got to Atos, and we had to run around looking for a bathroom. All the bathrooms on Dr. P's floor were in use, so I finally found one on the floor below. It was literally a closet. I mean, the average sized human could barely turn around in it, and have space to wash and dry hands. When we ran back to the office, they had already called my name and shunted me into an exam room. One of the girls that had come to put on my cast came in with an electric saw.
Now, you can tell me how safe these saws are, and demonstrate it on your bare skin all you want.... but I blanched. With how close that saw was coming to my skin, I kept freaking out and repeated "Stop! Stop!" I don't know if the girl had massive amounts of patience, or was just entertaining me, but she would stop. The saw generated so much heat; it was burning my arm underneath the cast. We stopped and started many times before she could crack open the cast and let my arm out. Dr. P came in and told me to go over to the X-ray clinic and get some pictures taken. So, we left the office and walked across the hall to radiology. J&S were sitting outside in the hallway in some chairs waiting for us. We told them I had to get some pictures, and talk to the doctor and then we could leave.
I recall that this visit with radiology was none too pleasant. When a little blond lady took me into the room she tried manipulating my hand and arm in ways that made me want to scream and slap. I remember there was this pedestal in the middle of the room instead of a huge table like you'd normally see. She brought over this step ladder, and would angle me around the pedestal in awkward positions. The x-ray machine was mounted directly above the pedestal, and she'd pull it all the way down. If I had flinched, I probably would have whacked the machine good. After a good 10 minutes of grabbing my hand and angling it this way and that, she had me sit out in the hallway by J&S and wait for the prints. Surprisingly, the entire ordeal took less than 30 minutes from beginning to end, walking in to radiology, having my x-rays, and then receiving my prints.
We hustled back into Dr.P's office and back into the exam room. He came in shortly after and said that things were looking a little better, that the stress on my hand bones had been drastically reduced. He gave me a "prescription" to take downstairs to the Pharmacy for a new brace. He said that I was to wear this brace 24/7 for at least the first few months, but let my arm have some air time a little every day. He said I had to sleep with it on. Still no lifting, cleaning or driving. But, he said once my wound healed and the scabs fell off, I could fully immerse my arm in water again.
So, we left the office and we all went down to the museum-like first floor where we walked into the Pharmacy. The lady that took my note said in really quick German that we needed to go to the shop across the hall. Okay.... the shop across the hall was like a gift shop. My husband just shrugged and we went into it, and found that there was a bundle of people on the wall facing the street that were setting people up with bandages, braces, etc. So, we took my note to the first available person, and they told us to wait. It was quite a long wait. Turns out, they had to contact our military insurance to make sure that I could receive this special brace for my arm. There was a whole debacle over it that my husband tried to handle, but we mostly did not understand what they were saying to us ... but we got the brace after about 30 minutes so I guess no harm, no foul! The fitted it on me, and told me not to wrap it too tight. Then, they gave me this interesting receipt. By interesting, I mean this stupid brace cost 80 Euros! At that time, that was about $120 or so. I couldn't believe how expensive this stupid thing was!
My brace is blue blue, with green piping, and red interior. It is not in the least attractive, and goes with absolutely nothing I wear. Or anyone would wear. I still use this brace today. It has a large metal bar insert that is to shape my bone and hold it in place, and Velcro straps that keep my wrist from moving. It's fabulous to sleep it, but took a lot of getting used to. It's hot, sweaty, and not at all breathable so it can start to stink rather quickly which means you have to wash it regularly.
So, Castie, you are no more. Fortunately, I now do not have to worry about itches and showering. The clunker you were ... will not be much missed.
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