About two months ago, my neurologist and I reduced one of the three seizure medications I take in the hopes of improving my fatigue and stabilizing my INR levels (a measure of effectiveness of Coumadin). Well all good things must come to an end as they say. Sure enough my seizures have come back. Seizures are a strange experience and it seems that how we experience them differs from person to person. And even how they emerge within a person can change depending on where the faulty electrical firing is occurring. There’s nothing like your brain being electrocuted by itself.
When I have seizures they are broadly known as partial seizures, as if they not quite seizures. They are seizures but they effect more localized areas of the brain and so their symptoms may be more discrete. Seizures typically last between 1 to 5 minutes, beyond that serious problems in the brain can emerge. My seizures last on average 1 to 2 minutes, although prior to medication I found myself in status elepticus, meaning a constant state of seizure activity. This can damage the brain and requires emergency treatment with high-dose of anti-epileptics. I have an epileptic brain pattern consistent with an old-school diagnosis of organic brain syndrome, which is a progressive form of brain disease. In short, at some point medications will stop working and my brain will develop more significant damage, including memory loss, changes in coordination, emotional instability, etc. So medication management is important and right now it stopped working.
Two weeks ago, I had my first series of seizures that I attributed to taking Benadryl for allergies, yes folks Benadryl can cause seizures in people with epilepsy. However, over the past several days my seizures have gotten worse without Benadryl. When I have a seizure my head feels like someone is blowing it up with a lot of air, like a big balloon. I get dizzy and suddenly start to have coordination issues and numbness and tingling down one side of my face and down the side of the body opposite the side of the brain being impacted by the electrical storm. It lasts about 1 to 2 minutes. And recently it starts back up again. And I feel like a balloon being blown up.
So my neurologist has increased one of my medications with another increase possible in another week if I’m not stabilized. The joys of a balloon brain.
Tuesday, October 24, 2017
Saturday, October 14, 2017
The Jigsaw
I am overweight. Round, wiggly, jiggly and ashamed. I shouldn’t feel ashamed, my weight gain is not a moral failing. It does not come from some criminal act. It does not come from a lack of ability in self-control. My appearance of a round apple is not because I have rejected healthy food, moderation, or even movement. I look different than the social ideal. Each part of my body deviates from a surface ideal of rail-thin women with China-doll delicacy. I am thick, sturdy, a Venus Willendorf rather than a Venus de Milo, pendulous boobs and a stomach plump enough that when I give myself injections they don’t hurt.
My weight gain is a direct outcome of my illness—the combined effect of medication side effects, the inability to move coupled with enormous dietary restrictions due to Coumadin. I’ve lived with its fluctuations now for twenty years and at forty-two I am starting to accommodate to the companionship of this weight. Yet, despite these well-known factors I enter several of my doctors’ offices with dread as they decide to remind me that I’m obese. They tell me this with a serious, almost stern, expression as if I have no idea that my body has exploded outward.
When they make me stand on the scale I feel a well of shame. That I have failed in some significant way to live up to the social expectations of what a “good” person should be. Even though my rational mind knows full well there is no linkage between a person’s integrity and worth and their number on the scale, my self-perception born and raised in a culture that values thin women—or more accurately women who look and act closer to porn stars or the emaciated image of the waif-models who bear striking resemblances to women whose lives have been battered by heroin addiction—cannot make the distinction. In the Mirror I am a failure. A feeling that is often reinforced as I am lectured by physicians.
Physicians are not trained in multicultural counseling or multicultural perspectives that modern Psychology has espoused and currently teaches its students. Physicians are trained in parts. A body broken down into sections like a jigsaw puzzle. When illness strikes, the puzzle shatters into a million pieces and the physician has to figure out how to put it together again. But rather than having your unique image to go by, they work off the template of what is the social norm—how your body should be normal and how it should look. This creates a problem, a disconnect between them and me. They are attempting to trim my jigsaw pieces to fit an image I no longer even approximate.
Now not all my doctors do this, some have enormous understanding about how my body has fallen to pieces and what it might look like put back together: an image that incorporates my brokenness rather than seeks to deny it. These doctors see my weight as something that causes me emotional pain and is one more aspect of my life my illness has wreaked havoc. They do not see my weight as something shameful, something that cannot be hidden because no clothing designer makes vertical stripes for women. They quietly ignore the scale and focus on what is working well for me right now and look practically at what aspect of my illness needs further treatment. They know that the illness is the problem, not the weight, not some shameful behavior or lack of control. Weight is just another piece of the puzzle.
The doctors who highlight it typically don’t understand the extraordinary pain that I deal with on a day-by-day basis. Pain is another of those nebulous jigsaw pieces that is treated with suspicion and assumption of some moral failing. I often feel compelled to inform doctors that I don’t rely on pain medication in order to separate myself from their social image of someone with opiate addiction. This too is a jigsaw piece often emerging not out of moral failing but out of deep psychological pain and/or physical pain. These doctors lack empathy and an understanding that to eradicate symptoms, one must dive into the depths of disease—a murky landscape of often times incurable problems. A place where doctors confront the limits of their knowledge, the limits of their science.
I often come down to wondering if what informs our social ideals that cause so many problems for those who deviate doesn’t come down to a very naked truth of our powerlessness—that life is out of our control and the jigsaw puzzle that makes us all up is often hard to piece together because we are ultimately putting it together with the wrong pictures.
My weight gain is a direct outcome of my illness—the combined effect of medication side effects, the inability to move coupled with enormous dietary restrictions due to Coumadin. I’ve lived with its fluctuations now for twenty years and at forty-two I am starting to accommodate to the companionship of this weight. Yet, despite these well-known factors I enter several of my doctors’ offices with dread as they decide to remind me that I’m obese. They tell me this with a serious, almost stern, expression as if I have no idea that my body has exploded outward.
When they make me stand on the scale I feel a well of shame. That I have failed in some significant way to live up to the social expectations of what a “good” person should be. Even though my rational mind knows full well there is no linkage between a person’s integrity and worth and their number on the scale, my self-perception born and raised in a culture that values thin women—or more accurately women who look and act closer to porn stars or the emaciated image of the waif-models who bear striking resemblances to women whose lives have been battered by heroin addiction—cannot make the distinction. In the Mirror I am a failure. A feeling that is often reinforced as I am lectured by physicians.
Physicians are not trained in multicultural counseling or multicultural perspectives that modern Psychology has espoused and currently teaches its students. Physicians are trained in parts. A body broken down into sections like a jigsaw puzzle. When illness strikes, the puzzle shatters into a million pieces and the physician has to figure out how to put it together again. But rather than having your unique image to go by, they work off the template of what is the social norm—how your body should be normal and how it should look. This creates a problem, a disconnect between them and me. They are attempting to trim my jigsaw pieces to fit an image I no longer even approximate.
Now not all my doctors do this, some have enormous understanding about how my body has fallen to pieces and what it might look like put back together: an image that incorporates my brokenness rather than seeks to deny it. These doctors see my weight as something that causes me emotional pain and is one more aspect of my life my illness has wreaked havoc. They do not see my weight as something shameful, something that cannot be hidden because no clothing designer makes vertical stripes for women. They quietly ignore the scale and focus on what is working well for me right now and look practically at what aspect of my illness needs further treatment. They know that the illness is the problem, not the weight, not some shameful behavior or lack of control. Weight is just another piece of the puzzle.
The doctors who highlight it typically don’t understand the extraordinary pain that I deal with on a day-by-day basis. Pain is another of those nebulous jigsaw pieces that is treated with suspicion and assumption of some moral failing. I often feel compelled to inform doctors that I don’t rely on pain medication in order to separate myself from their social image of someone with opiate addiction. This too is a jigsaw piece often emerging not out of moral failing but out of deep psychological pain and/or physical pain. These doctors lack empathy and an understanding that to eradicate symptoms, one must dive into the depths of disease—a murky landscape of often times incurable problems. A place where doctors confront the limits of their knowledge, the limits of their science.
I often come down to wondering if what informs our social ideals that cause so many problems for those who deviate doesn’t come down to a very naked truth of our powerlessness—that life is out of our control and the jigsaw puzzle that makes us all up is often hard to piece together because we are ultimately putting it together with the wrong pictures.
Saturday, October 7, 2017
Peaks and Valleys
My illness can be mapped in parts—moments of exacerbation and stabilization, a kind of new normalcy. There is the beginning of the illness that I barely noticed so subtle was it. Pain here, pain there—a strange neurological blip of physical unsteadiness. There were the slips of the fingers on the piano during songs I knew well. Then there were periods of silence, where these subtle changes slid into the background as if they hadn’t been there at all. Everything was inconsistent and separated by gaps in time. Things were so subtle, persisting that I assumed everyone felt as I did. To me, the idea of illness never entered my consciousness. I was certain what was happening happened to everyone, after all I could still run, work, hike, and engage in normal activities. Things just intermittently went wrong—like a barely perceptible distortion in a painting. A happy image marred by one figure frowning. Had I been less ignorant about what illness looks like, I might have picked up on that twisted grimace in the painting. But during this period of time, I was living with a new normal. Normal being the operative word.
Then there was the time after pneumonia. My personal life had become inordinately stressful and I ended up with pneumonia. This, too, seemed normal and just one more horrible stressor I had to cope with. But people develop pneumonia all the time. I was just fortunate not to end up in the hospital. But something shifted after pneumonia. Suddenly the intermittent blips became persistent. Neurological symptoms and severe spinal pain all started to worsen. I no longer could write them off as normal, as suddenly I was no longer able to get out of bed, my spine was froze stiff and any movement caused severe, unrelenting pain. That was the period of time when symptoms seemed most visibly a rheumatological disorder. It took four years and 6 doctors to get one diagnosis of Ankylosing Spondylitis.
But things didn’t stop there. By 2006, my illness went into the next stage of development. I started to infarct in my organs. First my brain with a stroke and three TIAs in one week beginning October 7, eleven years ago to the day I write this. I would go on to have two more TIAs after the first three, a bowel infarction and two kidney infarctions. But there was still no clear diagnosis—or at least no one wanted to make the diagnosis that would ultimately lead me to lifelong Coumadin use. That wouldn’t come for another seven more years despite bloodwork that determined the cause. However, in 2009 I was diagnosed with Systemic Lupus and by 2010 with Sjogrens. I was also diagnosed tentatively with something called MELAS. I consider this the third part of my illness as by 2010 medications were helping and I hadn’t had a stroke on the blood thinner I was on. Things seemed to be looking up.
Then Hurricane Sandy happened and what had been a remission began to turn into downward slide. My rheumatological symptoms began to break through the medications. My doctor scrambled adding different medications, but nothing was working. And soon the infarctions started again, this time in my eye. This finally prompted doctors to make the official diagnosis of Antiphospholipid Syndrome and put me on Coumadin. With the addition of a TNF-blocker called Cimzia, a chemo medication called Methotrexate and Coumadin, it was believed that my body would settle down. And it did for a short period of time. Then 2016 came around and the therapeutic level of Coumadin bottomed out and I started stroking. I’m in this stage now where my illnesses have progressed, while stable in a new normal they have worsened.
This is the flow of chronic disease. It is full of peaks and valleys.
Then there was the time after pneumonia. My personal life had become inordinately stressful and I ended up with pneumonia. This, too, seemed normal and just one more horrible stressor I had to cope with. But people develop pneumonia all the time. I was just fortunate not to end up in the hospital. But something shifted after pneumonia. Suddenly the intermittent blips became persistent. Neurological symptoms and severe spinal pain all started to worsen. I no longer could write them off as normal, as suddenly I was no longer able to get out of bed, my spine was froze stiff and any movement caused severe, unrelenting pain. That was the period of time when symptoms seemed most visibly a rheumatological disorder. It took four years and 6 doctors to get one diagnosis of Ankylosing Spondylitis.
But things didn’t stop there. By 2006, my illness went into the next stage of development. I started to infarct in my organs. First my brain with a stroke and three TIAs in one week beginning October 7, eleven years ago to the day I write this. I would go on to have two more TIAs after the first three, a bowel infarction and two kidney infarctions. But there was still no clear diagnosis—or at least no one wanted to make the diagnosis that would ultimately lead me to lifelong Coumadin use. That wouldn’t come for another seven more years despite bloodwork that determined the cause. However, in 2009 I was diagnosed with Systemic Lupus and by 2010 with Sjogrens. I was also diagnosed tentatively with something called MELAS. I consider this the third part of my illness as by 2010 medications were helping and I hadn’t had a stroke on the blood thinner I was on. Things seemed to be looking up.
Then Hurricane Sandy happened and what had been a remission began to turn into downward slide. My rheumatological symptoms began to break through the medications. My doctor scrambled adding different medications, but nothing was working. And soon the infarctions started again, this time in my eye. This finally prompted doctors to make the official diagnosis of Antiphospholipid Syndrome and put me on Coumadin. With the addition of a TNF-blocker called Cimzia, a chemo medication called Methotrexate and Coumadin, it was believed that my body would settle down. And it did for a short period of time. Then 2016 came around and the therapeutic level of Coumadin bottomed out and I started stroking. I’m in this stage now where my illnesses have progressed, while stable in a new normal they have worsened.
This is the flow of chronic disease. It is full of peaks and valleys.
Thursday, October 5, 2017
Physical "Ouch" Therapy
I’ve begun physical therapy again. This is an intervention I’ve become all-too familiar with having gone through it multiple times for stroke recovery, shoulder injury, and of course my spinal disease. Well, I’m back in therapy for my spinal disease, Ankylosing Spondylitis, which has progressed substantially this year with new fusions in the sacroiliac and neck regions. This has caused unbearable pain and for the first time since 2000, I have been on narcotic pain medications to manage it. Well, now that things have settled down due to lots of prednisone, my pain specialist felt it was time to go into physical therapy again to help maximize my benefits while I’m still in pain management.
Now, this is no simple matter for me. I have something called Body Dysmorphic Disorder, which I don’t talk about often, nor have I written about. But briefly it’s a psychological disorder that causes one to become hyperfocused on their body coupled with severe negative self-perceptions. I’ve had the disorder since I was about 12. One of my greatest struggles is seeing myself in a mirror. I become obsessed with my own image and not in any Narcissus-kind of way where he was in love with himself and spoke lovingly about his visage. No, my inner dialogue is destructive; it’s cruel; and it’s difficult to control. Now you ask what in the world does this have to do with physical therapy…
When I went for physical therapy on my shoulder, the place I went to was wall-to-wall mirrors. It became such a torment to go that I had my significant-other calling me out sick for my appointments until I stopped all together. Knowing I had to go to therapy again, I changed where I was going. I assumed that if I went to a large medical-based facility there would be less emphasis on body that this more sports-based rehab center had and more on actually helping patients with diseases. The night before I had to go I took twice my prescribed dose of antianxiety medication I was so terrified about having to face mirrors AND people looking so closely at my body.
So when I got to physical therapy, my first act was to scan for mirrors and with relief there was only one mirror the size you might have on the back of a door. Phew! The next thing I did was look for people with my body type. I’ve become overweight over the years due to the combined effect of too much prednisone and too-little activity. Another phew, not only were their different body types at various zones in the giant therapy room, but even several of the therapists were overweight. This put me at moderate ease, but I still scanned the room the whole time I was there to make sure no one was looking at me. Not only do I hate mirrors because I can’t disengage from them due to focusing on barely visible problems, asymmetries, or color changes (with Lupus I get the typical Lupus skin changes on my face), but I am preoccupied with how others must be looking at me. Thankfully, everyone was focused on their own tasks and I disappeared into the blur of activity. This was the perfect place for me.
While I was filled with relief that I didn’t have to worry about my body like I often do when I am out of my comfort zone, I did have to deal with the sheer challenge that I was going to be undertaking in the therapeutic process itself. Can I have a collective OUCH. There was a reason my pain specialist prescribed therapy while I was still on pain medications. I have a great physical therapist. And he has decided to challenge me and body parts. Body parts that just don’t work because of so many strokes coupled with nerve and joint damage.
So this week I spent 5 hours in physical therapy having joints rotated this way and that. Having to sit on a giant yoga/pilates ball that I thought was going to go flying out from under me or worse yet pop! while I lifted weights. Oh and having to relearn how to walk again. Who would have thought walking would be such a challenge but apparently, getting my legs to walk was not enough. I must sash-shay about with my arms a-swinging. And when I was all done, stepping, lifting, twisting, crunching, bouncing, pushing, and sash-shaying I thought I was going to fall down, go boom. And yet, I will go back to torture myself some more next week.
Now, this is no simple matter for me. I have something called Body Dysmorphic Disorder, which I don’t talk about often, nor have I written about. But briefly it’s a psychological disorder that causes one to become hyperfocused on their body coupled with severe negative self-perceptions. I’ve had the disorder since I was about 12. One of my greatest struggles is seeing myself in a mirror. I become obsessed with my own image and not in any Narcissus-kind of way where he was in love with himself and spoke lovingly about his visage. No, my inner dialogue is destructive; it’s cruel; and it’s difficult to control. Now you ask what in the world does this have to do with physical therapy…
When I went for physical therapy on my shoulder, the place I went to was wall-to-wall mirrors. It became such a torment to go that I had my significant-other calling me out sick for my appointments until I stopped all together. Knowing I had to go to therapy again, I changed where I was going. I assumed that if I went to a large medical-based facility there would be less emphasis on body that this more sports-based rehab center had and more on actually helping patients with diseases. The night before I had to go I took twice my prescribed dose of antianxiety medication I was so terrified about having to face mirrors AND people looking so closely at my body.
So when I got to physical therapy, my first act was to scan for mirrors and with relief there was only one mirror the size you might have on the back of a door. Phew! The next thing I did was look for people with my body type. I’ve become overweight over the years due to the combined effect of too much prednisone and too-little activity. Another phew, not only were their different body types at various zones in the giant therapy room, but even several of the therapists were overweight. This put me at moderate ease, but I still scanned the room the whole time I was there to make sure no one was looking at me. Not only do I hate mirrors because I can’t disengage from them due to focusing on barely visible problems, asymmetries, or color changes (with Lupus I get the typical Lupus skin changes on my face), but I am preoccupied with how others must be looking at me. Thankfully, everyone was focused on their own tasks and I disappeared into the blur of activity. This was the perfect place for me.
While I was filled with relief that I didn’t have to worry about my body like I often do when I am out of my comfort zone, I did have to deal with the sheer challenge that I was going to be undertaking in the therapeutic process itself. Can I have a collective OUCH. There was a reason my pain specialist prescribed therapy while I was still on pain medications. I have a great physical therapist. And he has decided to challenge me and body parts. Body parts that just don’t work because of so many strokes coupled with nerve and joint damage.
So this week I spent 5 hours in physical therapy having joints rotated this way and that. Having to sit on a giant yoga/pilates ball that I thought was going to go flying out from under me or worse yet pop! while I lifted weights. Oh and having to relearn how to walk again. Who would have thought walking would be such a challenge but apparently, getting my legs to walk was not enough. I must sash-shay about with my arms a-swinging. And when I was all done, stepping, lifting, twisting, crunching, bouncing, pushing, and sash-shaying I thought I was going to fall down, go boom. And yet, I will go back to torture myself some more next week.
Subscribe to:
Comments (Atom)