It's comforting knowing that my doctor is ready to turn over every rock to figure out what's going on with me... but sometimes those rocks hurt a little too much.
A few months ago, in a moment of frustration, my primary decided we should explore psychological reasons for my leg pain/weakness and recommended I see the in-house psychiatrist. In an effort to try everything, I agreed. She had also prescribed an anti-depressant as possible relief for nerve pain.. subsequently taking me off of it after 5 weeks because of severe side effects.
I saw the psychiatrist a few weeks ago. Turns out it was just a consultation in order to recommend further treatment.. so I sat in an uncomfortable room with someone I didn't know, who spent 45 minutes asking me to detail traumas four days before the anniversary of my brother's death, implied that I've done all of this for attention (first from my parents, but when I told her that would have been a horrible plan since they hate the wheelchair, she switched to general attention), and got upset with me for not continuing the anti-depressant despite the side effects. After all that, she decided I was "very sad" and needed to be medicated and in therapy.
Over the years, I've had several doctors that decided on my diagnosis before they even met me. The psychiatrist tops that list because not only did she seem to have a diagnosis, it felt like she was trying to make me fit inside it. She avoided questions that would prove her wrong and steered me away from answers that contradicted her. The worst of it was when I informed her of my two least favorite things ever: doctor's offices and attention.
And the one question she should have asked? Have I ever wished this was all in my head?
Yes I have.
As a teenager, when they couldn't find anything, I hoped it was in my head. I just wanted to be a teenager, I hated my knee brace, and I didn't want to listen to my parents fight about it anymore (my dad thought it was growing pains and my mom defended her decision to take me to each doctor's appointment). At 20, it took months for me to finally go in for that first appointment because I didn't want to do it all again; then I had to do it all again.. I spent two years with "nothing" wrong, while I insisted something was very wrong. I actually felt vindicated when they found some horribly torn cartilage and ended up taking out a piece of my patella. A few years later, I once again dragged my feet on an appointment, but was happy to hear it was just scar tissue. And finally, five years ago, after being told I didn't need surgery, but couldn't run anymore, I hid my strength loss and used my cane as little as possible. It took three friends sitting me down on separate occasions to tell me I wasn't fooling anyone, it was obvious I was hiding the pain and the limp.
Fast forward to this week when the side effects from the anti-deppresant the psychiatrist put me on put me in the ER with chest pain and trouble breathing. The ER eliminated heart attack, infections, and pneumonia, but since they couldn't rule out a virus causing inflammation, they left it up to my primary to stop or continue the medication. She did. She also asked if I wanted to try another medication and I told her they were the ones that wanted me medicated; I had been a willing participant before, but I had to draw the line. All the anti-depressants I've ever taken, for whatever reason, have only succeeded in making me miserable.. especially the last two,
I am so happy for the people they're able to help, but I am not one of those people.. while on the medication, I am very obviously not me. I don't paint, I rarely draw, I rely on my sense of responsibility to do things rather than motivation or desire. Not to mention all the side effects I've had to deal with. Even now, four days off the medication, my body is still trying to heal itself. I still move/think a lot slower than I like, my energy isn't quite there, and my focus still sucks... but I'm finally starting to sleep again (and feel rested), I want to talk to people (and actually enjoyed being outside today), and yesterday I even painted a little (I hope to even finish a drawing that's been staring at me for months!).
I'm digging myself out of a hole that well-meaning doctors have put me in.. and I'm doing it for the last time. My primary promised to stop torturing me, but more importantly, I refuse to take anti-depressants on someone else's suggestion ever again. If I end up on them again, it will be on my terms and it will be my decision. I'm fine with experimentations to see what will help, but this has always felt like a witch hunt; we're going to do this horrible thing to you and if you survive, you're guilty... if you don't survive, well.... your sacrifice is appreciated and we'll make sure to write that down. Thanks for participating!
Sunday, December 31, 2017
Sunday, August 20, 2017
Physical Therapy
The medical saga continues...
At the beginning of the year, my orthopedic decided to send me to physical therapy; not so much for my benefit, but for his. He had done every x-ray and test he could think of and/or looked at all my past results, and was at the end of his rope. He hoped a physical therapist would be able to see something through regular visits that he couldn't in my brief appointments.
I finally started at the end of May and my last appointment was on Friday. And I don't want to get too hopeful, but.... well, I'm hopeful that this has at least pointed us in a certain direction.
Early on in therapy and after a bad week of flare ups, I told my PT my own theory, and it turns out I may have been a bit right: I told her my knee is a tired, cranky old man yelling at kids to get off his lawn, my ankle/foot is a middle child just throwing up flares, happy for any kind of attention, and my hip is a spoiled 5 year old, just throwing random tantrums with seemingly no pattern.
We worked through quite a few victories (the kind where I can move my leg that extra quarter inch or something didn't hurt quite as much as the week before) and let downs in battling flare ups, new or moving pains, not improving in a way that was very noticeable, or even going backwards in progress. It truly takes a special person to help patients like me celebrate something so small and not get discouraged by the rest of it. To constantly reassure me that even trying each exercise was a good thing, wether I was able to do it or not, and remind me that I may be able to do it next time. We distracted each other with stories or my teasing her awesome use of technical terms like "stuff" and "things" or reminding her of the one exercise that I got to use some weights.
A few weeks ago, we stumbled on a bit of a discovery. She manually "turned off" a muscle in the front of my hip and showed me how to do it myself, then showed me one for the pain in back. When I came in the next week, I told her that I was able to calm some flares in the front, but the back one was only good in the moment... then I told her that if I can keep the front fairly calm, it helps the back. She said that points to the iliopsoas, which was a theory of another doctor as well; my adventure in injections, but because of my reaction to the injections, the results were inconclusive.
At my last appointment, after she did her final assessment, I asked about her conclusions. This isn't something she usually does; her job is to treat, not diagnose. I asked because that's specifically why I was there. She started off by splitting the joints rather than trying to put them all in one box; my ankle is mostly just weak because it never had a chance and my recent injury (which I will be asking about, she got me out of the brace, but I still have a sharp pain where the bone chip is), my knee is old and rusty and can't compensate for the others, my hip is the problem.
Conclusion: The iliopsoas seems to be the problem, it's stuck in the ON position and can't turn itself off. It could be tendonitis, it could be the muscles or tendons (she threw some actual technical terms at me and I forgot them a minute later) around it are irritating it somehow, my weak glutes may be making it overcompensate, something deep in the joint could be causing a problem. So the problem area has possibly been narrowed down, but the cause and the why for the cause are still a mystery.
It's a small step (one of those quarter inch ones), but it's a step. If she's right, it's a definitive one that puts us on a more certain path. And that makes me hopeful.
At the beginning of the year, my orthopedic decided to send me to physical therapy; not so much for my benefit, but for his. He had done every x-ray and test he could think of and/or looked at all my past results, and was at the end of his rope. He hoped a physical therapist would be able to see something through regular visits that he couldn't in my brief appointments.
I finally started at the end of May and my last appointment was on Friday. And I don't want to get too hopeful, but.... well, I'm hopeful that this has at least pointed us in a certain direction.
Early on in therapy and after a bad week of flare ups, I told my PT my own theory, and it turns out I may have been a bit right: I told her my knee is a tired, cranky old man yelling at kids to get off his lawn, my ankle/foot is a middle child just throwing up flares, happy for any kind of attention, and my hip is a spoiled 5 year old, just throwing random tantrums with seemingly no pattern.
We worked through quite a few victories (the kind where I can move my leg that extra quarter inch or something didn't hurt quite as much as the week before) and let downs in battling flare ups, new or moving pains, not improving in a way that was very noticeable, or even going backwards in progress. It truly takes a special person to help patients like me celebrate something so small and not get discouraged by the rest of it. To constantly reassure me that even trying each exercise was a good thing, wether I was able to do it or not, and remind me that I may be able to do it next time. We distracted each other with stories or my teasing her awesome use of technical terms like "stuff" and "things" or reminding her of the one exercise that I got to use some weights.
A few weeks ago, we stumbled on a bit of a discovery. She manually "turned off" a muscle in the front of my hip and showed me how to do it myself, then showed me one for the pain in back. When I came in the next week, I told her that I was able to calm some flares in the front, but the back one was only good in the moment... then I told her that if I can keep the front fairly calm, it helps the back. She said that points to the iliopsoas, which was a theory of another doctor as well; my adventure in injections, but because of my reaction to the injections, the results were inconclusive.
At my last appointment, after she did her final assessment, I asked about her conclusions. This isn't something she usually does; her job is to treat, not diagnose. I asked because that's specifically why I was there. She started off by splitting the joints rather than trying to put them all in one box; my ankle is mostly just weak because it never had a chance and my recent injury (which I will be asking about, she got me out of the brace, but I still have a sharp pain where the bone chip is), my knee is old and rusty and can't compensate for the others, my hip is the problem.
Conclusion: The iliopsoas seems to be the problem, it's stuck in the ON position and can't turn itself off. It could be tendonitis, it could be the muscles or tendons (she threw some actual technical terms at me and I forgot them a minute later) around it are irritating it somehow, my weak glutes may be making it overcompensate, something deep in the joint could be causing a problem. So the problem area has possibly been narrowed down, but the cause and the why for the cause are still a mystery.
It's a small step (one of those quarter inch ones), but it's a step. If she's right, it's a definitive one that puts us on a more certain path. And that makes me hopeful.
Monday, May 29, 2017
Not Afraid Anymore..
I am often regarded as an inspiration, a shining example, someone to look up to, and other titles I don't always feel I deserve. Don't get me wrong, I agree with the whys; always trying new things and excited to do so.. even trying to pull others with me. I just don't feel like anything special for doing these things, especially since it took a wheelchair to get me here. I'm going to be really honest here...
I used to be afraid of fucking everything.
Afraid to fail and to succeed, afraid of a crowd and of being alone, worrying about what others thought of me or that no one thought of me at all. I hated going out into social situations, but didn't want to stay home by myself. I feared getting called on to speak in class and, even worse, to read out loud. I worried about why I always felt the need to be moving, but was more afraid to call attention to myself by causing trouble, so I found quiet ways to fidget. I hated trying new things, but got bored so easily. And so many other things.... if you want to put a label on it, I have an anxiety disorder along with undiagnosed dyslexia and adhd. As a child I was simply labelled shy.
Near the end of high school, I grew tired of the limitations being "shy" gave me, so I decided to change and was fueled on by starting college; a place where no one knew me, had no expectations, and I could be whatever I wanted. It was rough, but I learned to speak up, to express my opinions (then learned to tone down the harshness just a bit), to push the limits of my comfort zone, and embrace my need for constant movement.
A year after graduating college, I had my second knee surgery and was told I had to think like I had limited miles on my knee. I went the opposite direction my doctor expected; I threw myself into an unknown social situation by signing up to train for my first half marathon with the American Heart Association. This began my journey into being active, but I was still cautious about pushing my limits, both physically and mentally.
Eight years later, I found myself in a wheelchair... but also part of two great communities; the trail running community that I was already a part of and were ready and willing to support my new endeavors, and the wheelchair community that I was new to and excited to show me all the things I could still do. They are the real inspirations. My friends that chose to experience these changes with me. The strangers, turned friends, that caught me right at the beginning to tell me there were so many awesome things to discover, and the ones that keep that juggernaut going.
You see, I try new things because I feel like I wasted so much time. I was afraid for so long. I missed so much in that fear; the foods I could have tried, the friends I could have had, the things I could have tried, the experiences I could have, well.. experienced. Instead of living in the could haves, I choose to live now and try whatever I come across. And that excites me. That's not to say I'm not afraid anymore, I just fear missed opportunities more now.
Plus I've made friends that make social situations less overwhelming for me, are willing to let me make/help me fix my mistakes, and are far too awesome to let me weigh myself down with worrying thoughts. The new things I try are way too fun to pass up, and I have grown to love the challenges they present. In recognizing the anxiety, dyslexia, and adhd, I have found better ways to adapt and adjust. And, did I mention it's a lot more fun to do things than to worry about them...?
Most of all, I want to be able to look back and say "yep, I tried that!"
I used to be afraid of fucking everything.
Afraid to fail and to succeed, afraid of a crowd and of being alone, worrying about what others thought of me or that no one thought of me at all. I hated going out into social situations, but didn't want to stay home by myself. I feared getting called on to speak in class and, even worse, to read out loud. I worried about why I always felt the need to be moving, but was more afraid to call attention to myself by causing trouble, so I found quiet ways to fidget. I hated trying new things, but got bored so easily. And so many other things.... if you want to put a label on it, I have an anxiety disorder along with undiagnosed dyslexia and adhd. As a child I was simply labelled shy.
Near the end of high school, I grew tired of the limitations being "shy" gave me, so I decided to change and was fueled on by starting college; a place where no one knew me, had no expectations, and I could be whatever I wanted. It was rough, but I learned to speak up, to express my opinions (then learned to tone down the harshness just a bit), to push the limits of my comfort zone, and embrace my need for constant movement.
A year after graduating college, I had my second knee surgery and was told I had to think like I had limited miles on my knee. I went the opposite direction my doctor expected; I threw myself into an unknown social situation by signing up to train for my first half marathon with the American Heart Association. This began my journey into being active, but I was still cautious about pushing my limits, both physically and mentally.
Eight years later, I found myself in a wheelchair... but also part of two great communities; the trail running community that I was already a part of and were ready and willing to support my new endeavors, and the wheelchair community that I was new to and excited to show me all the things I could still do. They are the real inspirations. My friends that chose to experience these changes with me. The strangers, turned friends, that caught me right at the beginning to tell me there were so many awesome things to discover, and the ones that keep that juggernaut going.
You see, I try new things because I feel like I wasted so much time. I was afraid for so long. I missed so much in that fear; the foods I could have tried, the friends I could have had, the things I could have tried, the experiences I could have, well.. experienced. Instead of living in the could haves, I choose to live now and try whatever I come across. And that excites me. That's not to say I'm not afraid anymore, I just fear missed opportunities more now.
Plus I've made friends that make social situations less overwhelming for me, are willing to let me make/help me fix my mistakes, and are far too awesome to let me weigh myself down with worrying thoughts. The new things I try are way too fun to pass up, and I have grown to love the challenges they present. In recognizing the anxiety, dyslexia, and adhd, I have found better ways to adapt and adjust. And, did I mention it's a lot more fun to do things than to worry about them...?
Most of all, I want to be able to look back and say "yep, I tried that!"
Wednesday, May 24, 2017
Take the damn stairs!
The other day, as I was waiting for an elevator on the second floor of a building, it arrived as I was looking longingly at the stairs. How easy it used to be to get out of a building. How I used to take a break from my desk by running up and down the stairs right next to my office. This happens often, but was made a bit more memorable when the doors opened; the woman already in the car started to step out, then realized it wasn't her floor and stepped back... then looked at me as I started towards the car and jumped out to take the stairs the rest of the way down. As I sat in the empty elevator for my short trip, I wondered what had gone through her head that made her jump out. Was she afraid of being cramped? Or afraid I would feel cramped? Or did she simply realize I didn't have a choice and she did, and acted on it?
I don't know which one I hope was her reason, but the last one has stuck with me. There are so many things that have been taken away or I've given up in this fight with my legs. And I have adapted and learned my new options; it's a way of life. Having these options makes me feel better, but it doesn't mean I like all of them. Especially elevators. I would have felt cramped with another person in there with me, but that's my problem to deal with and I would never demand that it become someone else's problem. I will always prefer stairs despite the difficulty they give me. Just like my love of the outdoors, stairs offer a moment to myself away from the overriding technology of the world. And that's mostly what I miss: being able to do that simple thing for myself instead of it being done for me. So if it's an option for you.. take the damn stairs!
Today, I read a rather scathing article about how Fidget Spinners reveal disability discrimination... hang in there with me, I promise this might make sense by the time I'm done! This is the most telling piece of the article: This is important. Really important, so read this next sentence twice: Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people.
I'd like to be clear right off, I don't disagree with the opinion of the article, I just don't appreciate how it was presented. The most poignant piece to stick with me was the upset that it took an able-bodied person to make the act of stimming "normal"... I put quotes on that because normal is superfluous. Stimming is a term for self-stimulation and everyone does it, it's just something that helps us focus (tap your pen, doodle on your paper..), the difference is the term has been placed on those who are disabled because they do it differently. Adapting to their own needs, which don't necessarily line up with "normal", but helps them get through the day.
But back to my point.... a non-disabled person had to bring the awareness that it's okay to need to do something physically to concentrate mentally. Like I said, I agree that this sucks, but it's also right up there with placing Lou Gehrig's name on a relatively unknown disease in order to bring it awareness and research or Christopher Reeve (aka Superman) to use his own name and fame to bring awareness and help to the disabled community after becoming disabled, himself. It would be great to have a champion come out of the disabled community and bring about this awareness.. take the stairs, if you will; I feel that longing in hoping everyone will listen for the sake of learning something beyond the "normal".
But people are simple creatures. While a person is willing to learn from anyone willing to teach, people generally need to learn things from those we already understand, those that are like us, that we are already familiar with, or that we have something in common with.
And so, just like my relationship with the elevator, sometimes we need that outside help. While each community wishes to teach their own lessons, that option doesn't always work. We never give up, though.. the stairs are always a possibility as long as we believe they are. And I will always do my small part in bringing my friends into adaptive sports, or letting them try my wheelchair, or answering random question, or even today when I inadvertently gave my trainer a small view into how much harder I work as he demonstrated my next move and he was surprised at the challenge he had with something that had become routine for him.
I don't know which one I hope was her reason, but the last one has stuck with me. There are so many things that have been taken away or I've given up in this fight with my legs. And I have adapted and learned my new options; it's a way of life. Having these options makes me feel better, but it doesn't mean I like all of them. Especially elevators. I would have felt cramped with another person in there with me, but that's my problem to deal with and I would never demand that it become someone else's problem. I will always prefer stairs despite the difficulty they give me. Just like my love of the outdoors, stairs offer a moment to myself away from the overriding technology of the world. And that's mostly what I miss: being able to do that simple thing for myself instead of it being done for me. So if it's an option for you.. take the damn stairs!
Today, I read a rather scathing article about how Fidget Spinners reveal disability discrimination... hang in there with me, I promise this might make sense by the time I'm done! This is the most telling piece of the article: This is important. Really important, so read this next sentence twice: Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people.
I'd like to be clear right off, I don't disagree with the opinion of the article, I just don't appreciate how it was presented. The most poignant piece to stick with me was the upset that it took an able-bodied person to make the act of stimming "normal"... I put quotes on that because normal is superfluous. Stimming is a term for self-stimulation and everyone does it, it's just something that helps us focus (tap your pen, doodle on your paper..), the difference is the term has been placed on those who are disabled because they do it differently. Adapting to their own needs, which don't necessarily line up with "normal", but helps them get through the day.
But back to my point.... a non-disabled person had to bring the awareness that it's okay to need to do something physically to concentrate mentally. Like I said, I agree that this sucks, but it's also right up there with placing Lou Gehrig's name on a relatively unknown disease in order to bring it awareness and research or Christopher Reeve (aka Superman) to use his own name and fame to bring awareness and help to the disabled community after becoming disabled, himself. It would be great to have a champion come out of the disabled community and bring about this awareness.. take the stairs, if you will; I feel that longing in hoping everyone will listen for the sake of learning something beyond the "normal".
But people are simple creatures. While a person is willing to learn from anyone willing to teach, people generally need to learn things from those we already understand, those that are like us, that we are already familiar with, or that we have something in common with.
And so, just like my relationship with the elevator, sometimes we need that outside help. While each community wishes to teach their own lessons, that option doesn't always work. We never give up, though.. the stairs are always a possibility as long as we believe they are. And I will always do my small part in bringing my friends into adaptive sports, or letting them try my wheelchair, or answering random question, or even today when I inadvertently gave my trainer a small view into how much harder I work as he demonstrated my next move and he was surprised at the challenge he had with something that had become routine for him.
Monday, April 24, 2017
Fiercely Independent
I'm often quickly labelled as fiercely independent. Pretty much from the beginning. And I am.. but that doesn't mean I don't need help sometimes; usually to save me from myself.
I grew up in family that didn't ask for help, didn't offer help, and rarely turned down a request for help. This turned me into the person that's right at the front when there's a call for help, but otherwise unsure of what to do until that call comes... and hiding off to the side as I try to figure something on my own rather than asking for help. It took me a long time to figure out how to ask, and even longer to learn to say these words out loud: can I help?
I still struggle with it every day; I get propelled forward by positive experiences and knocked back by the negative. I don't understand social interactions and so I file away experiences to refer back to, but I have a bit of a habit to think everyone will react that way and/or that person will react the same way each time. Something I also work on each day.
I have a much different perspective now... and it's different still depending on which mobility aid I'm using; wheelchair, crutches, cane. People may not realize it, but they're all viewed differently, which is understandable as each one has its own benefits and struggles. The thing is, I'm treated extremely differently with each one. I got into a very telling conversation with a group of friends recently, but I want to tell you two quick stories first..
-While using my wheelchair, I was opening a door when I realized someone was running towards me to help me with it. I continued on and was about to go through it when they got to me and held it for me. He was a bit disappointed at my simple thank you rather than one for his perceived herculean effort.
-This time I was on my crutches; after a long day/week, I had a grocery bag hanging from a handle of one crutch and then I dropped the other one. Having extra problems with my hip, it was a fight to try to get to it. I was stared at in the struggle and only when they realized I was crying, I was offered help. At that point, I had gotten my hand on the crutch, I was upset, and it felt like pity, so I denied the help and went on my way.
The discussion actually started because of the first story. We had started talking about both sides of the coin in how some people get upset when offered help, which has made people afraid to offer. One person, who is able-bodied and seems to be new in helping with adaptive sports, made the comment that it's important to help others, but also to accept help and be gracious in acceptance. Another, who is able-bodied and has been helping in adaptive sports for at least a few years, said that it's not that simple; accepting help graciously is important, but there's a line in the disabled community where we need to show that we can do for ourselves and we should be able to do so. I agreed and added that I thank everyone that offers me help, wether I accept it or not. The rest of the group, who were not very familiar with those that have a disability, were blown away... they openly admitted that wasn't something they would think about. And this was a group that goes around to teach anyone that wants to learn. So you can only imagine what I experience each day.
I told them that despite whatever disability we have, we still want to be as independent as possible, we want to try new things, and we want to be treated as the person we are rather than the disability we have. They had been great in asking each of us how best to help, in listening to each of us, in wanting to learn from us as well... and I made sure they knew that I wish everyone treated us that way.
I also shared some ground rules for helping.. now don't take these as a general rule (unless it's me since I made them up!), be sure to ask!
-Common courtesy rules always apply! Hold that door open for the next person, wether or not they're in a perceived role that you think demands it. And if someone holds a door open for you, freaking thank them! Do not take this moment to lecture them on abilities or feminism or whatever else.
I grew up in family that didn't ask for help, didn't offer help, and rarely turned down a request for help. This turned me into the person that's right at the front when there's a call for help, but otherwise unsure of what to do until that call comes... and hiding off to the side as I try to figure something on my own rather than asking for help. It took me a long time to figure out how to ask, and even longer to learn to say these words out loud: can I help?
I still struggle with it every day; I get propelled forward by positive experiences and knocked back by the negative. I don't understand social interactions and so I file away experiences to refer back to, but I have a bit of a habit to think everyone will react that way and/or that person will react the same way each time. Something I also work on each day.
I have a much different perspective now... and it's different still depending on which mobility aid I'm using; wheelchair, crutches, cane. People may not realize it, but they're all viewed differently, which is understandable as each one has its own benefits and struggles. The thing is, I'm treated extremely differently with each one. I got into a very telling conversation with a group of friends recently, but I want to tell you two quick stories first..
-While using my wheelchair, I was opening a door when I realized someone was running towards me to help me with it. I continued on and was about to go through it when they got to me and held it for me. He was a bit disappointed at my simple thank you rather than one for his perceived herculean effort.
-This time I was on my crutches; after a long day/week, I had a grocery bag hanging from a handle of one crutch and then I dropped the other one. Having extra problems with my hip, it was a fight to try to get to it. I was stared at in the struggle and only when they realized I was crying, I was offered help. At that point, I had gotten my hand on the crutch, I was upset, and it felt like pity, so I denied the help and went on my way.
The discussion actually started because of the first story. We had started talking about both sides of the coin in how some people get upset when offered help, which has made people afraid to offer. One person, who is able-bodied and seems to be new in helping with adaptive sports, made the comment that it's important to help others, but also to accept help and be gracious in acceptance. Another, who is able-bodied and has been helping in adaptive sports for at least a few years, said that it's not that simple; accepting help graciously is important, but there's a line in the disabled community where we need to show that we can do for ourselves and we should be able to do so. I agreed and added that I thank everyone that offers me help, wether I accept it or not. The rest of the group, who were not very familiar with those that have a disability, were blown away... they openly admitted that wasn't something they would think about. And this was a group that goes around to teach anyone that wants to learn. So you can only imagine what I experience each day.
I told them that despite whatever disability we have, we still want to be as independent as possible, we want to try new things, and we want to be treated as the person we are rather than the disability we have. They had been great in asking each of us how best to help, in listening to each of us, in wanting to learn from us as well... and I made sure they knew that I wish everyone treated us that way.
I also shared some ground rules for helping.. now don't take these as a general rule (unless it's me since I made them up!), be sure to ask!
-Common courtesy rules always apply! Hold that door open for the next person, wether or not they're in a perceived role that you think demands it. And if someone holds a door open for you, freaking thank them! Do not take this moment to lecture them on abilities or feminism or whatever else.
Sunday, February 12, 2017
Pushing through the unknown
I've never had a real emergency.. most of my ER visits turned into some tests/x-rays and sent home within hours with a quick recovery, and the rest of my hospital time has been fully planned at least a week in advance. I knew what was going to happen and I knew what to expect afterwards.
Five months after my appendectomy (and four and a half months after passing out and spraining/tearing/breaking my ankle and foot), I'm still winging it in recovery. So are my doctors.
Here's a quick rundown on them;
Primary- the surgeon passed me off to her after he cleared me almost two weeks later; needless to say, she was shocked when I came in for my check up, since she never got any reports. She sent me in for x-rays on my foot (ER only did ankle), scheduled me with the podiatrist, told me to check in with ortho when I saw him next, told me wait longer on sports, and put me on the path of probiotics to help with getting my stomach back on track. At my next check up, she was still worried about my stomach and I insisted that I just needed sports.. she suggested swimming, but I had been told by the podiatrist that I couldn't do that; and that was when she told me I didn't have to listen to everything they said. Since I was doing better than last time, but progress was so slow, she told me try things and see what I could do.
Podiatrist- poor man wasn't ready for me. He was amazing with my foot/ankle, but he didn't quite understand that I couldn't "take a break" from the wheelchair and obviously hasn't treated athletes. At the first visit, he left me in the boot and said the plan was to wait and see how it healed on its own first.. he also said no to swimming. At the second visit, he decided on an MRI and now decided I could try swimming (after I said, once again, that I don't kick).
Ortho- he feels we're at ropes end and wants me to go to physical therapy for my leg, with someone that will report her observations to him and hopefully give him a place to start. So I asked about going to therapy with my foot in a boot.. he took a quick look and listened to quick report and said he wasn't worried about it; he agreed with me that the sprain was good, he agreed with the podiatrist that the bone chip isn't a worry, and he said the torn ligaments just need support and more time, so that probably wouldn't interfere with therapy since movement of the hip is highest on the list.
With a pass to try things from the two doctors that have known me for over a year, I got myself a brace instead of the boot (fun fact: there is no way to sit comfortably in a wheelchair with a boot) and headed into the world.
So I started running a little in October (with just my arms and never more than a few miles), archery in November (a week or two before I was supposed to), and swimming in December. I've tried lacrosse a couple times, but rain and schedules has hampered that. More recently, I started running more and getting more of my upper body into it, then a little over a week ago I got back into sitting volleyball.
Due to my complicated recovery and none of us really knowing what to do here, getting moving again has been frustrating. I'm climbing back up from rock bottom and feel like the only thing I really retained was knowledge; my strength and endurance fell to zero. Both are coming back as slowly as my stomach. My shoulder was inactive long enough to go to hell, and is now angry at getting active again. It feels like it's finally getting back into it.
For the month of February, I've joined the Taji100 Challenge, forcing me to get in the miles. I've done okay so far, but it's obvious my strength is lacking.. I have no compensation for inclines and head winds, and it feels like I'm running with a flat tire more often than not. I'm getting farther though! And slightly faster each week! Yesterday I ran Brazen Razing's Bay Breeze 5K, my first race since adding in the rest of my upper body. It was hard, no doubt about it.. I'm glad I asked for a bit more of a cushion than usual because it got me farther out by the time the runners caught me. And I had a bigger concentration of people on their way out as I came back in, with a lot of them cheering me on. Some could tell I was having trouble and told me to dig deep. It really helped get me into the finish and I was definitely tired at the end. The next race is in a couple weeks and I'm interested to see how I do there.
Sooooo... then I went to play sitting volleyball in the afternoon. I'm getting my serve and hits back, but I'm afraid to set (and overthinking it) because I'm having a hell of a time sitting on my own. I already had trouble before because of my hip and lower back, but now my abdomen is still regaining strength. Luckily I'm far too stubborn to give up and I don't mind taking a fall. On a bright point, I joked after taking a hard fall onto my shoulder that it probably knocked my shoulder back into place... today I'm starting to think it wasn't a joke. I'm sore from racing then playing, but the shoulder impingement seems to be gone and my neck isn't as stiff anymore. I took today to rest, but I'm looking forward to see what kind of difference this makes.
These random improvements are great, but I'll be happy to when I get something a bit more predictable. Something more tangible, where I'm able to keep improving on it rather than hoping for the next one. I've spent way too long in the frustrated/bitter/cussing part of recovery... I'm holding to the fact that I'm even moving again and having some fun in the process.
Five months after my appendectomy (and four and a half months after passing out and spraining/tearing/breaking my ankle and foot), I'm still winging it in recovery. So are my doctors.
Here's a quick rundown on them;
Primary- the surgeon passed me off to her after he cleared me almost two weeks later; needless to say, she was shocked when I came in for my check up, since she never got any reports. She sent me in for x-rays on my foot (ER only did ankle), scheduled me with the podiatrist, told me to check in with ortho when I saw him next, told me wait longer on sports, and put me on the path of probiotics to help with getting my stomach back on track. At my next check up, she was still worried about my stomach and I insisted that I just needed sports.. she suggested swimming, but I had been told by the podiatrist that I couldn't do that; and that was when she told me I didn't have to listen to everything they said. Since I was doing better than last time, but progress was so slow, she told me try things and see what I could do.
Podiatrist- poor man wasn't ready for me. He was amazing with my foot/ankle, but he didn't quite understand that I couldn't "take a break" from the wheelchair and obviously hasn't treated athletes. At the first visit, he left me in the boot and said the plan was to wait and see how it healed on its own first.. he also said no to swimming. At the second visit, he decided on an MRI and now decided I could try swimming (after I said, once again, that I don't kick).
Ortho- he feels we're at ropes end and wants me to go to physical therapy for my leg, with someone that will report her observations to him and hopefully give him a place to start. So I asked about going to therapy with my foot in a boot.. he took a quick look and listened to quick report and said he wasn't worried about it; he agreed with me that the sprain was good, he agreed with the podiatrist that the bone chip isn't a worry, and he said the torn ligaments just need support and more time, so that probably wouldn't interfere with therapy since movement of the hip is highest on the list.
With a pass to try things from the two doctors that have known me for over a year, I got myself a brace instead of the boot (fun fact: there is no way to sit comfortably in a wheelchair with a boot) and headed into the world.
So I started running a little in October (with just my arms and never more than a few miles), archery in November (a week or two before I was supposed to), and swimming in December. I've tried lacrosse a couple times, but rain and schedules has hampered that. More recently, I started running more and getting more of my upper body into it, then a little over a week ago I got back into sitting volleyball.
Due to my complicated recovery and none of us really knowing what to do here, getting moving again has been frustrating. I'm climbing back up from rock bottom and feel like the only thing I really retained was knowledge; my strength and endurance fell to zero. Both are coming back as slowly as my stomach. My shoulder was inactive long enough to go to hell, and is now angry at getting active again. It feels like it's finally getting back into it.
For the month of February, I've joined the Taji100 Challenge, forcing me to get in the miles. I've done okay so far, but it's obvious my strength is lacking.. I have no compensation for inclines and head winds, and it feels like I'm running with a flat tire more often than not. I'm getting farther though! And slightly faster each week! Yesterday I ran Brazen Razing's Bay Breeze 5K, my first race since adding in the rest of my upper body. It was hard, no doubt about it.. I'm glad I asked for a bit more of a cushion than usual because it got me farther out by the time the runners caught me. And I had a bigger concentration of people on their way out as I came back in, with a lot of them cheering me on. Some could tell I was having trouble and told me to dig deep. It really helped get me into the finish and I was definitely tired at the end. The next race is in a couple weeks and I'm interested to see how I do there.
at the start of the 5K, with lots of cheering!
Sooooo... then I went to play sitting volleyball in the afternoon. I'm getting my serve and hits back, but I'm afraid to set (and overthinking it) because I'm having a hell of a time sitting on my own. I already had trouble before because of my hip and lower back, but now my abdomen is still regaining strength. Luckily I'm far too stubborn to give up and I don't mind taking a fall. On a bright point, I joked after taking a hard fall onto my shoulder that it probably knocked my shoulder back into place... today I'm starting to think it wasn't a joke. I'm sore from racing then playing, but the shoulder impingement seems to be gone and my neck isn't as stiff anymore. I took today to rest, but I'm looking forward to see what kind of difference this makes.
sitting volleyball with these lovely ladies!
These random improvements are great, but I'll be happy to when I get something a bit more predictable. Something more tangible, where I'm able to keep improving on it rather than hoping for the next one. I've spent way too long in the frustrated/bitter/cussing part of recovery... I'm holding to the fact that I'm even moving again and having some fun in the process.
Sunday, January 8, 2017
Maybe it's just in your head...
I'm going to be blunt.. if you ever come up with this brilliant suggestion, keep it to yourself. Lock it up inside and never actually voice it unless you have specific training and/or knowledge to identify it.
If you know someone with chronic pain or someone that's been having trouble getting diagnosed, I can guarantee you they've thought it. They've heard it. They've been suspected of it. They've maybe even hoped, if only to have an answer. And even if it is true, the pain is still very real to them; one condition is called somatoform disorder... yes, I've looked it up!
I'll be honest, every time I leave another doctor's appointment with more questions than answers or hear that the last test or x-ray says I'm fine, I wonder. Is it in my head? Can I walk on my own? Can I give up the wheelchair, the cane, the crutches? Am I creating this mystery condition on my own? And can I make it go away? That's usually where it stops... can I make it go away? No. I can pretend like I did for years. I can fake it. I can insist I can do all the things everyone else is doing, only to go home and suffer alone. Simply for the sake of having participated with everyone else. The only difference in the last few years is I refuse to do that anymore; I still participate, but I do it my way. With people who are happy to support me.... and chase me down hills, and profess their surprise (and love!) of my wheelchair and placard privileges, and want to see and experience how I play my sports, and so many other things I never would have never known if I hadn't finally admitted that this is who I am. This condition (whatever it is) is a part of me.
So why the request to keep it to yourself?
Because it hurts.
It reenforces those questions and makes them stronger. Makes it harder to deny them the next time they pop up. It makes me wonder longer. It makes that little piece of limbo a little more torturous. It makes my resolution that I'm doing exactly what I'm supposed to be doing a little less stable. It makes me less likely to admit or accept the help that I need.. and we all know how unlikely that is already.
Most of all, it implies a lack of belief in me and what I'm going through, what I live through each day. In many ways, it also trivializes it.... because of course it's just that simple!
Also because it upsets me. Pisses me off, really.
My imagination is vivid. I could come up with something SO much better than not being able to walk and being in constant pain. Something that would keep me out of spotlights and doctors' offices.. two of my most hated things ever (although I will admit, my current round of doctors are some of the best I've had in a long time).
*Disclaimer; don't stop trying to help.. just stick to what you know!
If you know someone with chronic pain or someone that's been having trouble getting diagnosed, I can guarantee you they've thought it. They've heard it. They've been suspected of it. They've maybe even hoped, if only to have an answer. And even if it is true, the pain is still very real to them; one condition is called somatoform disorder... yes, I've looked it up!
I'll be honest, every time I leave another doctor's appointment with more questions than answers or hear that the last test or x-ray says I'm fine, I wonder. Is it in my head? Can I walk on my own? Can I give up the wheelchair, the cane, the crutches? Am I creating this mystery condition on my own? And can I make it go away? That's usually where it stops... can I make it go away? No. I can pretend like I did for years. I can fake it. I can insist I can do all the things everyone else is doing, only to go home and suffer alone. Simply for the sake of having participated with everyone else. The only difference in the last few years is I refuse to do that anymore; I still participate, but I do it my way. With people who are happy to support me.... and chase me down hills, and profess their surprise (and love!) of my wheelchair and placard privileges, and want to see and experience how I play my sports, and so many other things I never would have never known if I hadn't finally admitted that this is who I am. This condition (whatever it is) is a part of me.
So why the request to keep it to yourself?
Because it hurts.
It reenforces those questions and makes them stronger. Makes it harder to deny them the next time they pop up. It makes me wonder longer. It makes that little piece of limbo a little more torturous. It makes my resolution that I'm doing exactly what I'm supposed to be doing a little less stable. It makes me less likely to admit or accept the help that I need.. and we all know how unlikely that is already.
Most of all, it implies a lack of belief in me and what I'm going through, what I live through each day. In many ways, it also trivializes it.... because of course it's just that simple!
Also because it upsets me. Pisses me off, really.
My imagination is vivid. I could come up with something SO much better than not being able to walk and being in constant pain. Something that would keep me out of spotlights and doctors' offices.. two of my most hated things ever (although I will admit, my current round of doctors are some of the best I've had in a long time).
*Disclaimer; don't stop trying to help.. just stick to what you know!
Sunday, January 1, 2017
Out Of The Box!!
I have never been one for new year's resolutions, they just seem like an empty promise to myself fueled by that image of starting a new chapter... having a clean slate of a new year. Besides, I hardly stick to the short goals, so a year-long one is merely a fool's dream.
I prefer to reflect, which led me to realize my circle has moved in tighter once again and I hardly even noticed this time. I also realized that it really is my fault that this happened. My fault because I changed. I grew. I stopped trying to fit myself to the image others wanted me to be. By the end of 2015, I had decided to let go of everything and everyone that was toxic, to figure out what would make me happy again. And it seems that I was rather successful at this.
For the first time in many years, I have decided who I was and fought against the boxes some were trying to fit me into.. gravitating towards those that simply love me for being me. I backed away from those that kept putting up those walls, trying to trap me in, but giving up when they realized I had escaped their grasp. And simply couldn't be bothered to stay in one spot long enough to catch up with me.
I realized this because I do still have contact with some, just not the same relationship as before, and I noticed how the same they still were. The difference was me; I didn't agree with them, I didn't think their jokes were funny anymore, I didn't like their attitude, and I had no desire to start a conversation.
I grew up being controlled by everyone around me and trying to please others while not expecting it for myself, so I easily fall into that type of relationship. It's too natural for me and I don't realize it until it's too late. So I'm very proud that my natural state this year was to stay away from those types of people. To quietly back away and let them find someone else for their box. Someone else to be who they needed, so I could do the same.
And thank you to all of you that simply skip down the road with me and/or let me do my own thing, encouraging the simple joys I'm able to afford myself in the hopes that I spread that same joy to those around me.
I prefer to reflect, which led me to realize my circle has moved in tighter once again and I hardly even noticed this time. I also realized that it really is my fault that this happened. My fault because I changed. I grew. I stopped trying to fit myself to the image others wanted me to be. By the end of 2015, I had decided to let go of everything and everyone that was toxic, to figure out what would make me happy again. And it seems that I was rather successful at this.
For the first time in many years, I have decided who I was and fought against the boxes some were trying to fit me into.. gravitating towards those that simply love me for being me. I backed away from those that kept putting up those walls, trying to trap me in, but giving up when they realized I had escaped their grasp. And simply couldn't be bothered to stay in one spot long enough to catch up with me.
I realized this because I do still have contact with some, just not the same relationship as before, and I noticed how the same they still were. The difference was me; I didn't agree with them, I didn't think their jokes were funny anymore, I didn't like their attitude, and I had no desire to start a conversation.
I grew up being controlled by everyone around me and trying to please others while not expecting it for myself, so I easily fall into that type of relationship. It's too natural for me and I don't realize it until it's too late. So I'm very proud that my natural state this year was to stay away from those types of people. To quietly back away and let them find someone else for their box. Someone else to be who they needed, so I could do the same.
And thank you to all of you that simply skip down the road with me and/or let me do my own thing, encouraging the simple joys I'm able to afford myself in the hopes that I spread that same joy to those around me.
Ah yes, this day was FULL of skipping!!! <3
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