The Waiting is the Hardest Part

The most persistent symptom of my brain injury is migraine headaches.  I’ve had the same headache, of varying intensity, for 231 days.  A couple of weeks ago, my neurologist changed my headache meds because they weren’t working well enough.  That meant discontinuing the old meds, waiting a few days, and then starting the new meds.   The new meds have to be increased slowly over four weeks until I reach the therapeutic dose.  That's 4+ weeks without adequate headache management.  The way my brain responds to this transition is that there are no limits on how bad a headache can get, or what else it can throw at me...seizures, hallucinations, whatever!  All bets are off, baby.

Most people are familiar with a 0-to-10 pain scale, with 0 being no pain, and 10 being the worst pain you can imagine.  On my prior meds, my headache pain was usually a 2-3, with occasional spikes to 4, 5, or 6.  Anything above 5 puts my brain in protective mode, not allowing for rehab or my home exercises that are meant to challenge and repair my injured brain.  Headache pain above a 5 also wrecks my speech, impairs reading comprehension and problems solving, and interferes with sleep.  It's a nasty cycle.  Not enough sleep = worse headaches, speech impairment, poor reading comprehension and problem solving.  See how much fun that is?

The 0-to-10 pain scale isn’t descriptive enough for me anymore.  It lacks dimension and detail.  Sure, I could say that for the last 3 weeks my headaches are a 5-6, with occasional spikes to 7 or 8, but what does that really mean?  I’m already in the non-functioning zone. 

Yesterday’s headache was hatchet buried in my skull, with the occasional fist to the face.

My current headache is head caught between two boulders with a pencil shoved in my left ear. 

I considered an historical pain scale, but quickly realized that was too subjective.

Remember that time I had meningitis and couldn’t get off the floor and cried all the way to the hospital because my head hurt so much and then I passed out from pain during the CT scan?  Well, that was a 9…because there might be something worse and I’d need that for a 10. 

So if that was a 9, then today is a solid 6.

That kind of pain scale doesn’t help anyone.  Well, it kinda helps me because I know I can survive that kind of pain.

It also helps me pass the time while I wait.  I have 7 more days until I reach the full dose.

Trivia

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.

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.

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.

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.

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.