I've had a headache for 200 consecutive days without a break.
The color red really bothers me. It's physically uncomfortable.
I wear dark sunglasses whenever I'm in a car, especially at night.
The sound of a pop-top can opening feels like a punch in the face.
The ringing in my ears is at a frequency of just over 10,000Hz...E-flat on the 9th octave. Sometimes there's a second pitch that's a fifth below in the key of E-flat major, which is B-flat, I think. I've had this noise since 1986, but it's a lot louder now.
I've had 51 sessions of speech, occupational, and physical therapy, not counting today.
Tuesday, January 7, 2014
Friday, December 20, 2013
Untethered
The decision has been made: I am not returning to work at the end of this year.
I have been approved for long term disability benefits, but my employment has been terminated. There was no other option; my brain hasn't recovered enough to allow me to resume working.
The termination process is already underway. I've returned my laptop, cell phone, corporate card, and handed my keys back to my manager. It is another devastating loss in a series of devastating losses for me.
For the first time in many, many years, I don't have a plan. Or a title. Or an employer. I don't even know what to call this thing I'm doing now. Medical leave no longer works because I have no job to go back to. The label I was given is "Totally Disabled", defined as "...being prevented by accidental bodily injury from performing the essential duties of my own job, or of any job for which I am qualified by education, training, or experience." I'm not okay with that label, even if it is accurate right now. I want to believe that it's temporary, even though there's no way to know for sure.
The only job I have now is healing. It's turned out to be the hardest job I've ever had.
I have been approved for long term disability benefits, but my employment has been terminated. There was no other option; my brain hasn't recovered enough to allow me to resume working.
The termination process is already underway. I've returned my laptop, cell phone, corporate card, and handed my keys back to my manager. It is another devastating loss in a series of devastating losses for me.
For the first time in many, many years, I don't have a plan. Or a title. Or an employer. I don't even know what to call this thing I'm doing now. Medical leave no longer works because I have no job to go back to. The label I was given is "Totally Disabled", defined as "...being prevented by accidental bodily injury from performing the essential duties of my own job, or of any job for which I am qualified by education, training, or experience." I'm not okay with that label, even if it is accurate right now. I want to believe that it's temporary, even though there's no way to know for sure.
The only job I have now is healing. It's turned out to be the hardest job I've ever had.
Saturday, November 23, 2013
Salt water
The cure for anything is salt water: sweat, tears, or the sea. Isak Dinesen
In the early days of my TBI, I was emotionally numb. I didn't laugh or cry. That has changed dramatically in the last month or so.
Now I cry all the time. Every day. Sometimes several times a day. And always without warning.
I cry when I'm sad. I'm sad a lot of the time.
I cry when I'm anxious. I'm anxious most of the time.
I cry when I'm happy, or when someone says or does something nice to me.
If salt water is the cure, how many tears will it take to cure me? Maybe I need to sweat more. Or take up residence on a beach. Or all three.
5 month update
It's been a while since my last entry; some things have changed and some remain the same.
Today is 23 weeks (161 days) since my TBI. I've had a migraine headache every minute of every day since the impact. That kind of thing really wears on a person. I'm on headache med #3 and #4, which haven't started working yet, but don't have any intolerable side effects that caused me to stop using med #1 and #2. The nausea and vertigo are somewhat improved but still a problem.
My calendar is still filled with rehab, doctor visits, and procedures. I'm doing well in rehab overall, but had several setbacks in the last month that stalled my progress and even caused regression in some areas. An oral maxillofacial surgeon has been added to my team of specialists because I also injured my jaw in the accident; it adds to the pain and interferes with speech and eating. A pain specialist will be next.
The decision about when and if I can return to work is looming large. My short term disability runs out on December 30th, and I have to either return to work, take unpaid leave, or apply for long term disability. There are pros and cons (mostly cons) of each option, and it's not an easy decision to make. No one can project whether I'll be capable of working a month from now, even part time...but my team is in agreement that I'm not capable of working at all right now.
Since I desperately want to be able to work, I'm pushing myself to improve my cognitive endurance. It's not enough to be able to do the cognitive activities I need to work...I need to be able to sustain that effort without crashing and burning. So far, I can manage about 90 minutes of continuous cognitive effort, but not every day. If I try to do more, my brain gets overloaded and shuts down. That's not even close to where I need to be, so I keep pushing to extend my limits.
I've also tried driving a few times...short distances under optimal conditions. It takes a great deal of effort and wears me out. My visual processing is still an issue, so everything appears closer, larger, and faster than it really is.
I really can't believe that this is my life...still significantly impaired after 5 months...and wondering how long until my brain functions normally again. All I can do is what I'm doing, and trust that it'll all work out.
Today is 23 weeks (161 days) since my TBI. I've had a migraine headache every minute of every day since the impact. That kind of thing really wears on a person. I'm on headache med #3 and #4, which haven't started working yet, but don't have any intolerable side effects that caused me to stop using med #1 and #2. The nausea and vertigo are somewhat improved but still a problem.
My calendar is still filled with rehab, doctor visits, and procedures. I'm doing well in rehab overall, but had several setbacks in the last month that stalled my progress and even caused regression in some areas. An oral maxillofacial surgeon has been added to my team of specialists because I also injured my jaw in the accident; it adds to the pain and interferes with speech and eating. A pain specialist will be next.
The decision about when and if I can return to work is looming large. My short term disability runs out on December 30th, and I have to either return to work, take unpaid leave, or apply for long term disability. There are pros and cons (mostly cons) of each option, and it's not an easy decision to make. No one can project whether I'll be capable of working a month from now, even part time...but my team is in agreement that I'm not capable of working at all right now.
Since I desperately want to be able to work, I'm pushing myself to improve my cognitive endurance. It's not enough to be able to do the cognitive activities I need to work...I need to be able to sustain that effort without crashing and burning. So far, I can manage about 90 minutes of continuous cognitive effort, but not every day. If I try to do more, my brain gets overloaded and shuts down. That's not even close to where I need to be, so I keep pushing to extend my limits.
I've also tried driving a few times...short distances under optimal conditions. It takes a great deal of effort and wears me out. My visual processing is still an issue, so everything appears closer, larger, and faster than it really is.
I really can't believe that this is my life...still significantly impaired after 5 months...and wondering how long until my brain functions normally again. All I can do is what I'm doing, and trust that it'll all work out.
Sunday, October 13, 2013
My love-hate relationship with the calendar
For the past 6 weeks, I've used a day planner to structure my day. My day planner is the tool that allows me to prioritize what I need to do and plan my time effectively. I need to balance high complexity and/or high value activities (paying bills, scheduling transportation, completing insurance paperwork, setting up meds for the dogs, rehab homework) with adequate breaks. Without these breaks or rests, my brain gets over-worked and I crash...mentally, physically, and emotionally...and I make errors. I've gotten proficient at knowing how long I can work on something before needing a break. I'm good at re-prioritizing on the fly when things don't go as planned.
The day planner lets me look back and see my progress. The days I spent at rehab or did my rehab exercises at home. The tasks I've accomplished. The increasing amount of cognitive activities I can perform. That's the bright side that keeps me motivated.
But there's also the dark side.
There's the 114 days since my brain injury. That's 114 consecutive days of non-stop headache. Medications help reduce the intensity, but I haven't found one yet that has tolerable side effects.
There's the plans I've had to cancel. Weekend getaways. Social engagements. Appointments for other medical issues. All erased from the calendar.
There's the 78 days of work I've missed. My team has filed at least 2 drugs for regulatory approval without me. I read the press releases.
And on the home front, the 73 days since Breanna (our eldest greyhound) was diagnosed with cancer. I manage her medical needs in addition to my own.
No one knows what the future holds, not for any of us. When I look ahead, I see plans I've made that I hope I can keep. I see December 23...the date I need to return to work or lose my job, unless I can use the vacation days I didn't take this year. And I calculate how much further I have to go in my recovery between now and then...71 days.
...and I'm scared to death that I don't have enough time.
The day planner lets me look back and see my progress. The days I spent at rehab or did my rehab exercises at home. The tasks I've accomplished. The increasing amount of cognitive activities I can perform. That's the bright side that keeps me motivated.
But there's also the dark side.
There's the 114 days since my brain injury. That's 114 consecutive days of non-stop headache. Medications help reduce the intensity, but I haven't found one yet that has tolerable side effects.
There's the plans I've had to cancel. Weekend getaways. Social engagements. Appointments for other medical issues. All erased from the calendar.
There's the 78 days of work I've missed. My team has filed at least 2 drugs for regulatory approval without me. I read the press releases.
And on the home front, the 73 days since Breanna (our eldest greyhound) was diagnosed with cancer. I manage her medical needs in addition to my own.
No one knows what the future holds, not for any of us. When I look ahead, I see plans I've made that I hope I can keep. I see December 23...the date I need to return to work or lose my job, unless I can use the vacation days I didn't take this year. And I calculate how much further I have to go in my recovery between now and then...71 days.
...and I'm scared to death that I don't have enough time.
Friday, October 4, 2013
It starts with a spark...
Yesterday I was able to recapture a tiny piece of my pre-PCS life.
I had a visit with an ophthalmologist who specializes in brain injury. She spent 90 minutes carefully determining what my vision issues were, and how to correct them. She mentioned a pilot study she wanted to do to show the effects of a particular anesthetic drop on convergence in brain injury, but said she was having trouble getting it approved. I asked her what the issues preventing approval were, and she explained them to me.
You see, before PCS, I was a clinical scientist and medical writer doing late stage drug development in oncology. I've designed, reviewed, implemented, analyzed, or monitored well over 100 clinical trials in oncology, infectious disease, cardiology, and ophthalmology. Also, I spent 3 years as a reviewer on an Institutional Review Board (IRB) that evaluates and approves clinical trials. I haven't been able to work since my injury, but somehow my brain was able to understand her situation. I suggested a revision in the trial design that solved all the problems.
I left with a prescription for new glasses, and an opportunity to be a paid consultant on her study.
It feels sooooo good to think like a scientist again.
I had a visit with an ophthalmologist who specializes in brain injury. She spent 90 minutes carefully determining what my vision issues were, and how to correct them. She mentioned a pilot study she wanted to do to show the effects of a particular anesthetic drop on convergence in brain injury, but said she was having trouble getting it approved. I asked her what the issues preventing approval were, and she explained them to me.
You see, before PCS, I was a clinical scientist and medical writer doing late stage drug development in oncology. I've designed, reviewed, implemented, analyzed, or monitored well over 100 clinical trials in oncology, infectious disease, cardiology, and ophthalmology. Also, I spent 3 years as a reviewer on an Institutional Review Board (IRB) that evaluates and approves clinical trials. I haven't been able to work since my injury, but somehow my brain was able to understand her situation. I suggested a revision in the trial design that solved all the problems.
I left with a prescription for new glasses, and an opportunity to be a paid consultant on her study.
It feels sooooo good to think like a scientist again.
Monday, September 30, 2013
A day in the life
(This was written earlier but not published.)
I started outpatient rehab at Bryn Mawr Rehabilitation Hospital at the end of August. This is a typical day for me.
7:00 am - Get up, feed dogs and give them their morning meds. I shower, dress, eat breakfast and take my meds. I've had a constant headache since the accident, and the meds help keep the pain under control most of the time.
8:30 am - Make sure I've got everything I need in my backpack. In addition to my wallet and phone, my must-haves include my day planner, steno pad, pen/pencil/highlighter, wrap around sunglasses, foam earplugs, visor, ginger Altoids (for nausea), meds for breakthrough pain, iPad, lip balm, bottled water, and hand sanitizer.
9:00 am - Since I'm still unable to drive, ROVER (community transportation service) picks me up and takes me to rehab. I qualify for this service now that I'm a person with a documented disability. The 21 mile trip can take anywhere from 45 minutes to 2.5 hours, depending on the number of stops on the route that day. The cost for this trip is $7.60 each way. Most of the passengers are senior citizens going to the senior center or doctor appointments.
10:30 am - Arrive at rehab and relax with a cup of coffee. I need time to recover from the bus ride in order to perform well in my therapy sessions.
11:00 am - Speech/Cognitive Therapy. My therapist works with me on memory and recall, planning, problem solving, and speech fluency. These are the skills most severely impaired in a frontal lobe brain injury. I have to learn new strategies to do things that used to be automatic.
12:00 pm - Lunch break. I intentionally schedule an hour break (or more) between therapy sessions to recover and deal with symptom flare-ups. I eat in the cafeteria with the staff and visitors and tell myself that I fit in.
1:00 pm - Occupational Therapy. My therapist works with me on visual processing and convergence, as I also have damage to the occipital lobe responsible for vision. My eyes don't work together very well and I'm very light sensitive. I also have double vision, nystagmus, and trouble processing movement of objects. The activities are designed to retrain my brain to accurately process and respond to what I see. My visual processing is currently equivalent to that of an 80 year old, which is a big improvement. We also work on fine motor skills, which are also impaired. My hands shake when I try to use them, and I've lost sensation and grip strength.
Later in the week I'll have Physical Therapy in place of Occupational Therapy. We work on balance and vestibular functions to retrain my brain to correctly interpret signals from my body position, vision, and inner ear. I'm currently classified as a high fall risk. The last thing I need is another injury, which is very common with PCS.
I also started seeing a psychologist at Bryn Mawr to deal with the other stuff that comes with having my whole life turned upside down by brain injury.
2:30 pm - ROVER picks me up for the ride home. If I'm lucky, I get home by 4:00 pm. Sometimes it's closer to 5:30 pm. The roads are narrow and winding, and those ginger Altoids come in handy.
When I get home, I let the dogs out and have a rest in a darkened room. The later I get home, the less rest time I get...and the more I need it.
6:00 pm - Time to feed the dogs and dispense evening meds. I double check to make sure I set up their medications correctly. Counting out pills and putting them in the right slots in the medication tray is difficult, and sometimes I screw it up.
7:00 pm - Time to feed me, which is less fun than it sounds. My sense of taste is impaired, and many of my favorite foods taste bland or bitter. Only sweet foods taste normal to me. My fine motor control skills aren't very good, so using knives, peelers, and other tools is difficult. Chewing is painful because I injured my jaw in addition to my brain. Usually I heat up something simple and force myself to eat it despite the taste. I nearly always spill my food on myself or the table when I eat.
The rest of the evening is mine to enjoy. I might watch some TV or read stuff online. Bedtime is earlier now that I need 9-10 hours of sleep to function.
There is almost always at least one day off between therapy sessions, so tomorrow would be an at-home day. I'll work on my rehab homework and do all the other stuff: doctor appointments, insurance claims, pay bills, phone calls, and household chores. Timing is important...cognitive activities need to be done early while I'm still fresh...and I need frequent rest breaks. If I push too hard, I crash and cannot function anymore.
And so it goes.
I started outpatient rehab at Bryn Mawr Rehabilitation Hospital at the end of August. This is a typical day for me.
7:00 am - Get up, feed dogs and give them their morning meds. I shower, dress, eat breakfast and take my meds. I've had a constant headache since the accident, and the meds help keep the pain under control most of the time.
8:30 am - Make sure I've got everything I need in my backpack. In addition to my wallet and phone, my must-haves include my day planner, steno pad, pen/pencil/highlighter, wrap around sunglasses, foam earplugs, visor, ginger Altoids (for nausea), meds for breakthrough pain, iPad, lip balm, bottled water, and hand sanitizer.
9:00 am - Since I'm still unable to drive, ROVER (community transportation service) picks me up and takes me to rehab. I qualify for this service now that I'm a person with a documented disability. The 21 mile trip can take anywhere from 45 minutes to 2.5 hours, depending on the number of stops on the route that day. The cost for this trip is $7.60 each way. Most of the passengers are senior citizens going to the senior center or doctor appointments.
10:30 am - Arrive at rehab and relax with a cup of coffee. I need time to recover from the bus ride in order to perform well in my therapy sessions.
11:00 am - Speech/Cognitive Therapy. My therapist works with me on memory and recall, planning, problem solving, and speech fluency. These are the skills most severely impaired in a frontal lobe brain injury. I have to learn new strategies to do things that used to be automatic.
12:00 pm - Lunch break. I intentionally schedule an hour break (or more) between therapy sessions to recover and deal with symptom flare-ups. I eat in the cafeteria with the staff and visitors and tell myself that I fit in.
1:00 pm - Occupational Therapy. My therapist works with me on visual processing and convergence, as I also have damage to the occipital lobe responsible for vision. My eyes don't work together very well and I'm very light sensitive. I also have double vision, nystagmus, and trouble processing movement of objects. The activities are designed to retrain my brain to accurately process and respond to what I see. My visual processing is currently equivalent to that of an 80 year old, which is a big improvement. We also work on fine motor skills, which are also impaired. My hands shake when I try to use them, and I've lost sensation and grip strength.
Later in the week I'll have Physical Therapy in place of Occupational Therapy. We work on balance and vestibular functions to retrain my brain to correctly interpret signals from my body position, vision, and inner ear. I'm currently classified as a high fall risk. The last thing I need is another injury, which is very common with PCS.
I also started seeing a psychologist at Bryn Mawr to deal with the other stuff that comes with having my whole life turned upside down by brain injury.
2:30 pm - ROVER picks me up for the ride home. If I'm lucky, I get home by 4:00 pm. Sometimes it's closer to 5:30 pm. The roads are narrow and winding, and those ginger Altoids come in handy.
When I get home, I let the dogs out and have a rest in a darkened room. The later I get home, the less rest time I get...and the more I need it.
6:00 pm - Time to feed the dogs and dispense evening meds. I double check to make sure I set up their medications correctly. Counting out pills and putting them in the right slots in the medication tray is difficult, and sometimes I screw it up.
7:00 pm - Time to feed me, which is less fun than it sounds. My sense of taste is impaired, and many of my favorite foods taste bland or bitter. Only sweet foods taste normal to me. My fine motor control skills aren't very good, so using knives, peelers, and other tools is difficult. Chewing is painful because I injured my jaw in addition to my brain. Usually I heat up something simple and force myself to eat it despite the taste. I nearly always spill my food on myself or the table when I eat.
The rest of the evening is mine to enjoy. I might watch some TV or read stuff online. Bedtime is earlier now that I need 9-10 hours of sleep to function.
There is almost always at least one day off between therapy sessions, so tomorrow would be an at-home day. I'll work on my rehab homework and do all the other stuff: doctor appointments, insurance claims, pay bills, phone calls, and household chores. Timing is important...cognitive activities need to be done early while I'm still fresh...and I need frequent rest breaks. If I push too hard, I crash and cannot function anymore.
And so it goes.
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