Monday, July 22, 2019
Moving to Facebook
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Tuesday, September 25, 2018
Out of Sync
When you have had as many strokes as I have, you are constantly being surprised about what was damaged in the brain. You’re cruising along with everything being easy to do until suddenly you hit a brick wall and you simply can’t do the next behavior, no matter how hard you try. Well some of these brick walls are obscure and barely noticeable to anyone other than those who know you best. Then there are the walls that you didn’t even know you had but are noticeable to others. Welcome to part three of my series on the mental health aspects of living with Systemic Lupus and Antiphospholipid Syndrome.
I have something known as Pseudobulbar Affect disorder. It basically means my emotional states do not match up with the emotional tenor of a conversation or how I feel inside. I can be prone to laughing or smiling at random or in response to something that should bring about another emotional response. Alternately I can be found crying for no reason, though for me it’s often laughing in appropriately.
I had no idea I had anything wrong, but should have been suspicious when my boyfriend’s mother got all upset with me accusing me of laughing at her when she was talking about something serious. I was of course defensive because I would never laugh at someone in crisis. But then my boyfriend pointed out to me that I do either grimace inappropriately or smile at the wrong times. Complaints I never had to worry about prior to my strokes.
The good news is they have medication that treats it called Nudexta (one of a few on the market; this is the one I take). It’s not often when you are dealing with a chronic illness to have a medication that actually works 100% of the time. And to top it all off, it seems to diminish my depression and my body dysmorphic symptoms. Miracle drug!
What is important about PBA is that it suggests there is an often-neglected part of the brain that inhibits emotions at cellular level. It highlights that crucial taken-for-granted part of the brain that discerns what emotion should be deployed in the current situational context. PBA either effects the inhibition of emotions or the social perception of what emotions to apply to a given situation. In either case, it is difficult to diagnose because we are often quick to dismiss individuals who are incongruent with their social environments, designated as misfits, eccentrics, or un-insighful. Thinking that there may be a biochemical problem or brain injury is the last thought on people’s minds. But it is the first thought on my mind.
Today my PBA is a managed by a rust-colored capsule I take twice a day. I wouldn’t change this for the world. It keeps me in sync with the outside world around me. I no longer telegraph a sense of disconnect between me and the world around me.
I have something known as Pseudobulbar Affect disorder. It basically means my emotional states do not match up with the emotional tenor of a conversation or how I feel inside. I can be prone to laughing or smiling at random or in response to something that should bring about another emotional response. Alternately I can be found crying for no reason, though for me it’s often laughing in appropriately.
I had no idea I had anything wrong, but should have been suspicious when my boyfriend’s mother got all upset with me accusing me of laughing at her when she was talking about something serious. I was of course defensive because I would never laugh at someone in crisis. But then my boyfriend pointed out to me that I do either grimace inappropriately or smile at the wrong times. Complaints I never had to worry about prior to my strokes.
The good news is they have medication that treats it called Nudexta (one of a few on the market; this is the one I take). It’s not often when you are dealing with a chronic illness to have a medication that actually works 100% of the time. And to top it all off, it seems to diminish my depression and my body dysmorphic symptoms. Miracle drug!
What is important about PBA is that it suggests there is an often-neglected part of the brain that inhibits emotions at cellular level. It highlights that crucial taken-for-granted part of the brain that discerns what emotion should be deployed in the current situational context. PBA either effects the inhibition of emotions or the social perception of what emotions to apply to a given situation. In either case, it is difficult to diagnose because we are often quick to dismiss individuals who are incongruent with their social environments, designated as misfits, eccentrics, or un-insighful. Thinking that there may be a biochemical problem or brain injury is the last thought on people’s minds. But it is the first thought on my mind.
Today my PBA is a managed by a rust-colored capsule I take twice a day. I wouldn’t change this for the world. It keeps me in sync with the outside world around me. I no longer telegraph a sense of disconnect between me and the world around me.
Thursday, September 6, 2018
Lost in the Mirror
This is part two of my three-part blog series on mental health, mine in particular. I struggle with severe anxiety that largely revolves around social situations. One specific aspect of my anxiety stems from what is known as Body Dysmorphic Disorder, a related disorder to Obsessive-Compulsive disorder.
My experience with BDD has been lifelong dating back to earliest childhood, where I would spend hours in front of mirrors and self-conscious of my body determining all the things that were wrong. And much of it is laughable when I put it down on paper, for example, I used to think my nose was not snub enough and my skull was too flat in the back, my hair too thin on my head and too much on my face, breasts were too large (I had plastic surgery at the age of 18 to change this), my feet were too blocky, one eye drooped more than the other, and I had a hump on my back. All of these things I would obsess on and be certain everyone noticed and judged me for. It was so bad as a child and young adult that I would spend hours in front of the mirror, avoid going places, and eventually turned down a promising career in the theater. All because the person I saw in the mirror was hideously ugly and everyone must notice it too and think poorly of me.
Where did all of this come from that at five I was already showing signs of the disorder? A lot has to do with my relationship with my mother. Who I will say did a generally great job raising me but for this one area. My mother, too, is obsessed with her perceived flaws and began when I was very little telling me what was wrong with me. My feet were not as tiny as hers (I wear a 7.5 shoe so my feet actually aren’t huge, but they weren’t her delicate 5 shoe size). My hair was a tangled, thin mess, not thick like hers. I was “too busty” and “top-heavy” and my back was curving. I had a Roman nose “roaming all over my face”, my “father’s nose” (it’s actually just a normal nose). And I was never thin enough. When I had my breast reduction at 18 (which I regret), my mother said to me “now you look the way you were supposed to look”. Anyway, you get my drift. My mother was preoccupied with how I looked and I subsequently developed the same drive to pick myself apart.
These days BDD is still a part of my life, impacted by the bodily changes of illness, aging, and weight-gain associated with medications I take for Lupus, Gastroparesis, and depression. However, I no longer stand in front of mirrors—I avoid them instead…like they are the plague. This avoidance keeps much of the negative narrative under wraps. Yet, I still am socially phobic. I’ve developed a very comfortable life in relative solitude with just a handful of friends I see occasionally and my spouse. I still avoid large social landscapes like malls, clothing stores, and other stores due to the anxiety that invades telling me I will be stared at and judged as flawed and ugly. I find myself envious of women who are confident being overweight and want to be more like them rather than how I am. When I step back I often think that the mental energy I invest in lacerating myself because of how I think I look is ludicrous and a waste of my time, but that rational thought is not powerful enough to alter the way I think.
What was a striking miracle in my BDD journey was being put on Nudexta for a stroke outcome known as pseudobulbar (more on that in the next post). While not approved for BDD, I noticed an almost immediate benefit in calming down the obsessive thinking and compulsive behavior that subsequently emerges to calm the thoughts. So I owe my strokes a small bit of thanks.
Individuals with body dysmorphic disorder [BDD] are preoccupied with one or more perceived defects or flaws in their physical appearance, which they believe look ugly, unattractive, abnormal, or deformed. The perceived flaws are not observable or appear slight to other individuals. Concerns range from looking “unattractive” or “not right” to looking “hideous” or “like a monster.” Preoccupations can focus on one or many body areas, most commonly the skin, hair, nose. However, any body area can be the focus of concern. Some individuals are concerned about perceived asymmetry of body areas. The preoccupations are intrusive, unwanted, time-consuming (occurring, on average, 3-8 hours per day), and usually difficult to resist or control. (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, p. 243).
My experience with BDD has been lifelong dating back to earliest childhood, where I would spend hours in front of mirrors and self-conscious of my body determining all the things that were wrong. And much of it is laughable when I put it down on paper, for example, I used to think my nose was not snub enough and my skull was too flat in the back, my hair too thin on my head and too much on my face, breasts were too large (I had plastic surgery at the age of 18 to change this), my feet were too blocky, one eye drooped more than the other, and I had a hump on my back. All of these things I would obsess on and be certain everyone noticed and judged me for. It was so bad as a child and young adult that I would spend hours in front of the mirror, avoid going places, and eventually turned down a promising career in the theater. All because the person I saw in the mirror was hideously ugly and everyone must notice it too and think poorly of me.
Where did all of this come from that at five I was already showing signs of the disorder? A lot has to do with my relationship with my mother. Who I will say did a generally great job raising me but for this one area. My mother, too, is obsessed with her perceived flaws and began when I was very little telling me what was wrong with me. My feet were not as tiny as hers (I wear a 7.5 shoe so my feet actually aren’t huge, but they weren’t her delicate 5 shoe size). My hair was a tangled, thin mess, not thick like hers. I was “too busty” and “top-heavy” and my back was curving. I had a Roman nose “roaming all over my face”, my “father’s nose” (it’s actually just a normal nose). And I was never thin enough. When I had my breast reduction at 18 (which I regret), my mother said to me “now you look the way you were supposed to look”. Anyway, you get my drift. My mother was preoccupied with how I looked and I subsequently developed the same drive to pick myself apart.
These days BDD is still a part of my life, impacted by the bodily changes of illness, aging, and weight-gain associated with medications I take for Lupus, Gastroparesis, and depression. However, I no longer stand in front of mirrors—I avoid them instead…like they are the plague. This avoidance keeps much of the negative narrative under wraps. Yet, I still am socially phobic. I’ve developed a very comfortable life in relative solitude with just a handful of friends I see occasionally and my spouse. I still avoid large social landscapes like malls, clothing stores, and other stores due to the anxiety that invades telling me I will be stared at and judged as flawed and ugly. I find myself envious of women who are confident being overweight and want to be more like them rather than how I am. When I step back I often think that the mental energy I invest in lacerating myself because of how I think I look is ludicrous and a waste of my time, but that rational thought is not powerful enough to alter the way I think.
What was a striking miracle in my BDD journey was being put on Nudexta for a stroke outcome known as pseudobulbar (more on that in the next post). While not approved for BDD, I noticed an almost immediate benefit in calming down the obsessive thinking and compulsive behavior that subsequently emerges to calm the thoughts. So I owe my strokes a small bit of thanks.
Friday, August 10, 2018
In the Ash Pile
Once more I have let my blog go without updates. Lots have happened during my absence, including 4 weeks if Iron infusions. But that’s not what I want to write about today. It’s occurred to me I’ve never talked about my mental health on this blog or the original blog. So in the hopes of helping others, I’m going to launch this three-part series talking about my mental health. Today’s topic is depression.
My lack of talking about depression has a lot to do with experiences twenty years ago when I first got sick. When I was upfront about my depression, the doctors who I saw for treatment of my physical illness would right off my symptoms due to being depressed. It delayed getting care until after I had my first series of strokes. It took suffering a preventable problem for doctors to step beyond depression as a causative factor. It made me very self-protective about talking about my depression but it’s time to do so.
My depression is serious and I take medication for it, which has made the difference between suffering from constant suicidal ideations to having clear head. When I am depressed, I start to shower maybe once a week. More than that feels like enormous effort. I stay in bed for days on end because I start to think what’s the point of getting up the day will be gray-filled. There are times when I go to sleep at night that I wish I could sleep for eternity, to be oblivious to all things and demands around me. In short, my depression leads me down a path that is full of thorny thoughts and rocky uphill terrain. Hopelessness and a sense of apathy fill me up and I wonder if I will ever get out of it. It’s the apathy that really brings me down further as it comes with feelings of shame—thoughts that I am not living up to my potential or doing enough good in the world.
My illness is a big trigger for my depression these days. I get discouraged by my mobility issues, the weight gain from my medications, the chronic pain and stiffness. And the thought that there will never be a cure but only treatments that hope to slow the progression of the diseases. When I get depressed, I have to work extra hard to challenge my cognitive distortions because the triggers of my depression can’t be changed. As such, I have to focus on small successes; small moments of success when I have hours of pain-free movement. I have to focus on gratitude for all the help I get from friends and family. I also focus on my spirituality, which allows me to feel that I am not alone as I go through my dark times.
Because I sought help for my depression for both counseling and medication (the most successful combination per research), I’ve enjoyed a much more even mood. And I’ve also learned how much of my depression is caused not just the psychosocial factors of my illness, but my illness itself. So right now at this point in my life, I can say my depression is under control. But I’m not doing it alone and I can’t emphasize the importance of seeking help if you are feeling depressed. There’s nothing to be ashamed of.
My lack of talking about depression has a lot to do with experiences twenty years ago when I first got sick. When I was upfront about my depression, the doctors who I saw for treatment of my physical illness would right off my symptoms due to being depressed. It delayed getting care until after I had my first series of strokes. It took suffering a preventable problem for doctors to step beyond depression as a causative factor. It made me very self-protective about talking about my depression but it’s time to do so.
My depression is serious and I take medication for it, which has made the difference between suffering from constant suicidal ideations to having clear head. When I am depressed, I start to shower maybe once a week. More than that feels like enormous effort. I stay in bed for days on end because I start to think what’s the point of getting up the day will be gray-filled. There are times when I go to sleep at night that I wish I could sleep for eternity, to be oblivious to all things and demands around me. In short, my depression leads me down a path that is full of thorny thoughts and rocky uphill terrain. Hopelessness and a sense of apathy fill me up and I wonder if I will ever get out of it. It’s the apathy that really brings me down further as it comes with feelings of shame—thoughts that I am not living up to my potential or doing enough good in the world.
My illness is a big trigger for my depression these days. I get discouraged by my mobility issues, the weight gain from my medications, the chronic pain and stiffness. And the thought that there will never be a cure but only treatments that hope to slow the progression of the diseases. When I get depressed, I have to work extra hard to challenge my cognitive distortions because the triggers of my depression can’t be changed. As such, I have to focus on small successes; small moments of success when I have hours of pain-free movement. I have to focus on gratitude for all the help I get from friends and family. I also focus on my spirituality, which allows me to feel that I am not alone as I go through my dark times.
Because I sought help for my depression for both counseling and medication (the most successful combination per research), I’ve enjoyed a much more even mood. And I’ve also learned how much of my depression is caused not just the psychosocial factors of my illness, but my illness itself. So right now at this point in my life, I can say my depression is under control. But I’m not doing it alone and I can’t emphasize the importance of seeking help if you are feeling depressed. There’s nothing to be ashamed of.
Friday, June 15, 2018
Quitting Everything all the Time
I hadn’t realized just how long it has been since I last blogged. This is a prime example of my lack of commitment and follow-thru. I recently, by recent, I mean yesterday, finished a book called 5 Habits of a Woman Who Doesn’t Quit by Nicki Koziarz and I can honestly say it was an inspiring book for those who quit everything. That’s me. I start loads of projects and then gradually I fade away from them with a range of excuses, some legitimate, some skirting lies. My illness is a big reason I can’t seem to maintain momentum. Since I last wrote, I’ve had 2 strokes, which wear me out and each time my brain feels just a little more sluggish. So I set aside my personal goals of maintaining my blogs and my other writing projects. I have a great group of students who have all manifested extreme patience with me when it comes to getting their grades in, which when you have over 200 students it takes a while to get everyone’s needs met. So here I am blogging with a fuzzy wuzzy brain contemplating why I quit.
My quitting tendency has is a pre-illness habit. Looking back into my childhood, I quit (or rather got kicked out of) ballet, Girl Scouts, Band, Ice Skating, Soccer, and as a young adult I quit the theater, which I had a great deal of professional success in. I quit my first marriage and I’ve quit a lot of personal relationships. Oh and of course I’ve quit diets and exercise routines. And as soon as someone encourages me in something I’m working on, I quit. Nicki Koziarz’s book got me thinking about these events and all the excuses I have, which always come down to “I’m too tired”; something she actually explores.
“I’m too tired.” I get tired easily, physically and emotionally. And I think spiritually. After I start things I hit a point where some part of me just poops out. On one hand this may be because I’ve had Systemic Lupus and a host of related autoimmune diseases since I was a child, but on the other hand there’s a psychological and spiritual component. Psychologically, I start to feel anxious as projects near ending or people’s needs become greater—I’m certain that I will fail. So I quit. If I’m checked out then nothing fails because of me; things just come to a glaring stop. My anxiety is what really tires me out. I never realized how bad it was until recently where I’m popping Ativan like candy just so I can have a conversation. Something has to give.
One of the things I love about Nicki’s book is she uses the Book of Ruth from the Bible as her example of a woman who doesn’t quit. This is my favorite book in the Bible precisely because of that. Ruth doesn’t quit. She doesn’t let poverty (something I live with daily) stop her from meeting her needs. She doesn’t let her role as a stranger in a strange land stop her. And she engages in back-breaking work—no physical tiredness stops her. And through her dedication, she finds herself married and cared for and being the mother of the lineage of both King David and Jesus. Wow a pretty powerful woman. Nicki goes through this story with a fine-toothed comb looking at just how Ruth did what she did; what her skills were that allowed her to keep going even when it’s hard.
So here I am staring down my quit-self. I get physically tired from my Lupus—that means what I can do has to be done in a few hours with rest built in. Not an excuse to quit; I just have to manage my energy levels better. Years ago I read a psychology clinical manual on coping with autoimmune diseases and they advised patients to “live within the envelope”. In other words, you have a defined amount of energy and you have to use it wisely. Not quit.
Then of course comes my psychological self, which is really what gets me running the opposite direction to hide in my house. I avoid. I avoid phone calls. I avoid my computer. I avoid text messages. I avoid avoid avoid. Clearly something is going on with this and I’m not quite sure what it is. I just know the closer I get to projects and people, the faster my feet move in the opposite direction. I could say that it goes back to early childhood when I was kicked out of ballet. It was a traumatic experience. I was 5 and all my teacher could tell me was how wrong I was with every step I took. Finally I acted out and out I went. But this seems like a shallow excuse. I could say the abuse I suffered as a child, both physical and sexual, played a role, but even this seems to not fit. So why do I psychologically quit? I just don’t know. I have to think more on this.
Nicki’s book has a spiritual component, which is an area of my life I’ve quit, but have now returned to. And I wonder if this isn’t part of the reason I’ve quit. While atheism is on the rise, and I was an atheist for a number of years (20), spirituality does play a big role in maintaining psychological health and well-being. There’s no specific evidence that any one religion plays a role, but the research suggests we need a spiritual framework to feel good in our lives. As I confronted my lack of spirituality, I’ve wondered very seriously if this hasn’t played a role in my quitting. I’ve lived with a sense of what’s the point to anything. I just need to do what I want when I want—there’s nothing at stake in the process. As long as I’m happy most of the time that’s all that matters. But when spirituality enters into the conversation, there are consequences to living my life in this self-focused way. Suddenly there is an expectation of engaging compassionately toward others and to follow-thru on our spiritual fruits we were given. But in this expectation, we are not alone in our follow thru. We have some higher power that supports us. I’m reminded of Kari Jobe’s song, “I Am Not Alone”:
My quitting tendency has is a pre-illness habit. Looking back into my childhood, I quit (or rather got kicked out of) ballet, Girl Scouts, Band, Ice Skating, Soccer, and as a young adult I quit the theater, which I had a great deal of professional success in. I quit my first marriage and I’ve quit a lot of personal relationships. Oh and of course I’ve quit diets and exercise routines. And as soon as someone encourages me in something I’m working on, I quit. Nicki Koziarz’s book got me thinking about these events and all the excuses I have, which always come down to “I’m too tired”; something she actually explores.
“I’m too tired.” I get tired easily, physically and emotionally. And I think spiritually. After I start things I hit a point where some part of me just poops out. On one hand this may be because I’ve had Systemic Lupus and a host of related autoimmune diseases since I was a child, but on the other hand there’s a psychological and spiritual component. Psychologically, I start to feel anxious as projects near ending or people’s needs become greater—I’m certain that I will fail. So I quit. If I’m checked out then nothing fails because of me; things just come to a glaring stop. My anxiety is what really tires me out. I never realized how bad it was until recently where I’m popping Ativan like candy just so I can have a conversation. Something has to give.
One of the things I love about Nicki’s book is she uses the Book of Ruth from the Bible as her example of a woman who doesn’t quit. This is my favorite book in the Bible precisely because of that. Ruth doesn’t quit. She doesn’t let poverty (something I live with daily) stop her from meeting her needs. She doesn’t let her role as a stranger in a strange land stop her. And she engages in back-breaking work—no physical tiredness stops her. And through her dedication, she finds herself married and cared for and being the mother of the lineage of both King David and Jesus. Wow a pretty powerful woman. Nicki goes through this story with a fine-toothed comb looking at just how Ruth did what she did; what her skills were that allowed her to keep going even when it’s hard.
So here I am staring down my quit-self. I get physically tired from my Lupus—that means what I can do has to be done in a few hours with rest built in. Not an excuse to quit; I just have to manage my energy levels better. Years ago I read a psychology clinical manual on coping with autoimmune diseases and they advised patients to “live within the envelope”. In other words, you have a defined amount of energy and you have to use it wisely. Not quit.
Then of course comes my psychological self, which is really what gets me running the opposite direction to hide in my house. I avoid. I avoid phone calls. I avoid my computer. I avoid text messages. I avoid avoid avoid. Clearly something is going on with this and I’m not quite sure what it is. I just know the closer I get to projects and people, the faster my feet move in the opposite direction. I could say that it goes back to early childhood when I was kicked out of ballet. It was a traumatic experience. I was 5 and all my teacher could tell me was how wrong I was with every step I took. Finally I acted out and out I went. But this seems like a shallow excuse. I could say the abuse I suffered as a child, both physical and sexual, played a role, but even this seems to not fit. So why do I psychologically quit? I just don’t know. I have to think more on this.
Nicki’s book has a spiritual component, which is an area of my life I’ve quit, but have now returned to. And I wonder if this isn’t part of the reason I’ve quit. While atheism is on the rise, and I was an atheist for a number of years (20), spirituality does play a big role in maintaining psychological health and well-being. There’s no specific evidence that any one religion plays a role, but the research suggests we need a spiritual framework to feel good in our lives. As I confronted my lack of spirituality, I’ve wondered very seriously if this hasn’t played a role in my quitting. I’ve lived with a sense of what’s the point to anything. I just need to do what I want when I want—there’s nothing at stake in the process. As long as I’m happy most of the time that’s all that matters. But when spirituality enters into the conversation, there are consequences to living my life in this self-focused way. Suddenly there is an expectation of engaging compassionately toward others and to follow-thru on our spiritual fruits we were given. But in this expectation, we are not alone in our follow thru. We have some higher power that supports us. I’m reminded of Kari Jobe’s song, “I Am Not Alone”:
I am not aloneSo the question of the day is: Can I develop sticking-to-itness if I live within my physical envelope, manage my anxiety, and continue to strengthen my spirituality? I think I can. Or at least start the process (see I gave myself an out, ugh).
You will go before me
You will never leave me
I am not alone
Thursday, December 14, 2017
Footloose and Not-So Fancy Free
A year and a half ago, I fractured my left foot in multiple places. You might ask how I did this—walking. Yes, it appears I do not know how to walk, a point my physical therapist did note during my recent assessment for therapy for my spine. It took a year for the foot to heal, at least I thought it had healed. An added bonus was 6 months into the fracture, my other foot fractured. It took so long to heal and I’m too scary of a patient for surgery they opted to prescribe a bone-stimulator for me. Fast forward…
Sunday, December 10… I stepped on a dog toy. Within seconds, I heard a crack and snap and felt pain shooting through my foot and leg. Off to the ER I went. After a surprisingly short wait, the physician assistant came in with her cell phone and proceeded to show me the lovely skeletal image of my foot. And there it was, the fourth metatarsal snapped almost entirely in half. She gave me some Tylenol and told me to see my orthopedist.
Two days later I sat grinning in my orthopedist’s office and he asked why. I said for some reason I found it funny that I stepped on a dog toy and cracked my foot again, while my dogs gnaw on these things without any impact on their teeth. My orthopedist looked at my chart and said, well you did it again in the same spot. 3 months, he said. At least 3 months of a walking boot and a broken foot. Then if it’s still not healed it’s some kind of surgery—either a bone graft or pins and screws.
The million dollar question everyone is asking: why are my bones weak? I don’t appear to have a form of bone cancer. My bone density scans are normal so far. My calcium levels are on the normal side. And I haven’t had corticosteroids in 7 months. Nevertheless, my bones appear to be weak… What it all means is the zebra returns. If you forgot what a medical zebra is it’s a person with a medical problem of know known cause.
This is an all too familiar scene.
Sunday, December 10… I stepped on a dog toy. Within seconds, I heard a crack and snap and felt pain shooting through my foot and leg. Off to the ER I went. After a surprisingly short wait, the physician assistant came in with her cell phone and proceeded to show me the lovely skeletal image of my foot. And there it was, the fourth metatarsal snapped almost entirely in half. She gave me some Tylenol and told me to see my orthopedist.
Two days later I sat grinning in my orthopedist’s office and he asked why. I said for some reason I found it funny that I stepped on a dog toy and cracked my foot again, while my dogs gnaw on these things without any impact on their teeth. My orthopedist looked at my chart and said, well you did it again in the same spot. 3 months, he said. At least 3 months of a walking boot and a broken foot. Then if it’s still not healed it’s some kind of surgery—either a bone graft or pins and screws.
The million dollar question everyone is asking: why are my bones weak? I don’t appear to have a form of bone cancer. My bone density scans are normal so far. My calcium levels are on the normal side. And I haven’t had corticosteroids in 7 months. Nevertheless, my bones appear to be weak… What it all means is the zebra returns. If you forgot what a medical zebra is it’s a person with a medical problem of know known cause.
This is an all too familiar scene.
Saturday, December 2, 2017
Trusting Your Doctor
It’s not often you get good news when you have a chronic illness, so it’s important to hang on to it when you do get it. I saw my neurologist for my 3-month follow-up and I’m neurologically stable at the moment. No TIAS, no seizures—in fact my seizures are stable enough that we are reducing one of my medications with the goal of discontinuing entirely.
I have a good relationship with my neurologist—so much so I recommend her to anyone looking for a good one that listens well, stays current on new research, and cares about her patients. I have a lot of respect for her and that builds my trust in her. This is something I don’t give readily. I’ve had a lot of negative experiences with neurologists. In fact, I’m writing my memoir right now and I’m in the chapter that actually examines a period of time when I was searching for a diagnosis and seeing neurologists to get help—what I ended up with—a lot of misdiagnosis, misogynist doctors, and sadly the failure to recognize I was stroking until it was too late to save functioning. Suffice it to say, I trust few doctors and often it takes a long time. When I do have one I trust, I cling to that doctor. My neurologist is one of those doctors.
I think about the process of trust a lot when I think of my doctors. Let’s face it you have to be able to immediately be comfortable with them—so much so you have to be willing to be naked with all your noticeable imperfections dangling out there. You have to be able to talk about embarrassing things as well. And you have to be able to do this instantly. You don’t have the luxury of building up to disclosures that you have in other relationships. Other relationships you can put people through the tests and obstacle courses or a complex maze where you are the center goal. Not with doctors, nope. You have to leap. And some doctors fall short of the catching process.
Trusting my doctors is a core part of my relationship with them and it’s focused on three things. First, their professional confidence: Do they demonstrate they know what they’re talking about. However, there needs to be a lack of narcissism in the process. I immediately feel suspicious of a narcissistic doctor—I immediately start to think that he or she will likely not listen to a darn thing I’m going to say about my experience. Instead they will be preoccupied with their internal thoughts over my external speech. Second, are they capable of sitting there to listen to my story—it’s complicated and it’s been a difficult road, but not knowing it places me at serious risk. The doctor who can listen is a doctor who will earn my trust and will likely take better care of me. Third are they willing to be honest and direct with me. I appreciate here not everyone wants to know what doctors are thinking in terms of diagnosis, but I like to hear doctors work out their diagnostic ideas, even if it means they think a set of symptoms may be due to psychological factors like stress. (I prefer straight physical causes than psychological ones—these seem a lot harder to address.) And finally there can’t be derogatory statements made due to my body or gender—and yes, I’ve had doctors like this. I even had a doctor who sent me a personal letter stating I couldn’t survive without him and needed to stay with him—seriously! Doctors are people first, which means all the issues that impact society are present in the medical field too.
When I think about these criteria, I realize just what an uphill battle a doctor has to engage in to earn our trust or at least mine. But then I add a “tough sh#@%” to myself—it’s my body and I deserve to have doctors respect it.
I have a good relationship with my neurologist—so much so I recommend her to anyone looking for a good one that listens well, stays current on new research, and cares about her patients. I have a lot of respect for her and that builds my trust in her. This is something I don’t give readily. I’ve had a lot of negative experiences with neurologists. In fact, I’m writing my memoir right now and I’m in the chapter that actually examines a period of time when I was searching for a diagnosis and seeing neurologists to get help—what I ended up with—a lot of misdiagnosis, misogynist doctors, and sadly the failure to recognize I was stroking until it was too late to save functioning. Suffice it to say, I trust few doctors and often it takes a long time. When I do have one I trust, I cling to that doctor. My neurologist is one of those doctors.
I think about the process of trust a lot when I think of my doctors. Let’s face it you have to be able to immediately be comfortable with them—so much so you have to be willing to be naked with all your noticeable imperfections dangling out there. You have to be able to talk about embarrassing things as well. And you have to be able to do this instantly. You don’t have the luxury of building up to disclosures that you have in other relationships. Other relationships you can put people through the tests and obstacle courses or a complex maze where you are the center goal. Not with doctors, nope. You have to leap. And some doctors fall short of the catching process.
Trusting my doctors is a core part of my relationship with them and it’s focused on three things. First, their professional confidence: Do they demonstrate they know what they’re talking about. However, there needs to be a lack of narcissism in the process. I immediately feel suspicious of a narcissistic doctor—I immediately start to think that he or she will likely not listen to a darn thing I’m going to say about my experience. Instead they will be preoccupied with their internal thoughts over my external speech. Second, are they capable of sitting there to listen to my story—it’s complicated and it’s been a difficult road, but not knowing it places me at serious risk. The doctor who can listen is a doctor who will earn my trust and will likely take better care of me. Third are they willing to be honest and direct with me. I appreciate here not everyone wants to know what doctors are thinking in terms of diagnosis, but I like to hear doctors work out their diagnostic ideas, even if it means they think a set of symptoms may be due to psychological factors like stress. (I prefer straight physical causes than psychological ones—these seem a lot harder to address.) And finally there can’t be derogatory statements made due to my body or gender—and yes, I’ve had doctors like this. I even had a doctor who sent me a personal letter stating I couldn’t survive without him and needed to stay with him—seriously! Doctors are people first, which means all the issues that impact society are present in the medical field too.
When I think about these criteria, I realize just what an uphill battle a doctor has to engage in to earn our trust or at least mine. But then I add a “tough sh#@%” to myself—it’s my body and I deserve to have doctors respect it.
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