Where to start. Lexi survived first semester and midterms. She's hanging on by a thread academically and athletically right now. There've been improvements, but she also seems to have some maybe permanent cognitive issues. Fun stuff. But I'll come back to that.
A while back she started dating a boy who has been persistently trying to have a relationship with her since fall of sophomore year. Lexi liked him, then he liked her, then they didn't like each other, then they got to be friends, then he liked her again but she wasn't sure, then she liked him and they dated, then he started coming on a bit too strongly and her time got tight so she tried to break it off with him and stay friends, then he begged her to give him a chance to respect her boundaries so they went out again, then he pushed the boundaries so they broke up, then they went out as friends, then he asked her to prom and they celebrated an early valentine's day, then all hell broke loose. Back to that later too.
For some reason the girls don't make close friends easily. They are different than many of their peers. Let's face it, they haven't exactly had a traditional path to where they are now. Their biofather and I divorced when they were roughly two and six months old, so they've spent virtually their entire lives swapping houses. I still can't write about everything that went on over there since Lexi is not 18 yet, but let's just summarize it by saying "money" and "stuff" doesn't compensate for or neutralize unhealthiness. And when things went supernovae about 8 years ago, our lives and the girls' lives became insanely different from most of their peers, for reasons an outsider simply cannot comprehend. Unless you've lived it, as an adult or a child, you cannot understand and I'm not sure we could ever fully explain it. All I can say is, I still am deeply affected by what went on, and I am allegedly an adult. So for kids...
Then add in changing teams, changing schools, surgeries, concussions, and the PCS. I don't think those two should ever have to apologize to anyone for being "weird" or not always being "happy" or really for anything that is "different" about their personalities. Most adults would have crumbled under the emotional demands and pressure of what they've gone through. They're stronger, smarter, and better for having endured it, and they should be proud, not criticized. IMO. But WTF do I know.
So why is Lexi about as down as I've ever seen her? Because this boy positioned himself as her best friend and confidant and then used it to make her feel isolated, self-conscious, and disliked. We saw warning signs as far back as this fall -- he was very focused on Lexi, and very persistent in wanting a relationship with her. She even felt a bit disingenuous because she could tell his feelings were stronger than hers, and she knew instinctively they were out of proportion to the time they'd spent together or the stage of their friendship/relationship. But, like they often are initially, things could be explained away. (Sara's 1st rule of relationships: If you find yourself having to spin things or find excuses or alternate meanings to things to make them positive, after the third thing, walk away.)
Then, without getting into extensive details, Lexi became extremely uncomfortable with some of the words and actions. And when Lexi broke off the relationship, she discovered she'd been wise to trust her instincts. The boy had apparently contacted several of her teammates in a manner designed to gather information to use against Lexi or to drive a wedge between Lexi and the teammates. He chose to do both by forwarding screen shots to Christi of what the girls he contacted clearly thought would be private conversations.
Now, Lexi knows she is not "popular" -- it only takes being left out of a few social activities for that message to get driven home. And she knows that people don't "get" the post-concussion stuff - that was also made clear to her last summer by the actions and words of some of the kids on the team after she sustained her 4th concussion. And the fact that 99% of her teammates laugh about concussions, mock the concussion testing, took/take no interest in her situation, and generally don't seem to give a shit about her or how she is feeling has driven home that message repeatedly. But...
When you read words written by people on your own team that talk about how you are weird or disliked because you don't seem happy, or because they think you are "exaggerating" your injury, or think you have a "rude attitude about stupid stuff" or being around you is "exhausting" because you seem to need to be "cared" for or that you were "dramatizing" the effects of the concussions etc... well that really hurts. Especially when it comes from kids who are moody, bitchy, judgmental, mopey, rude, and generally teen-agery themselves.
When that happens at the same time you discover the person you thought you could trust the most, outside of your immediate family, is actually the one driving the negative conversation and undermining relationships (he was also contacting Christi with his "concerns" about Lexi) it can be difficult, even devastating.
When you see in black and white that your fears that your teammates don't like you or "get" what's going on with you are true, how do you as a teenager process that? Do you lash out and tell them that, clearly, you are exaggerating your situation -- that's why the school and the people who administer the SAT and AP and ACT grant you extra time and accommodations for your testing... that's why you have to learn new tools to check your math work because you show signs of acquired math dyslexia... that's why your GPA has dropped almost .5 in a year while your effort has increased and your course load decreased... that's why you get slaughtered on straight up memorization tests now, when in the past you could just rattle things off without a second thought -- none of which these kids know. Maybe they would if they took :30 to ask, but, they do not.
See, the flaw in their logic is pretty simple: Lexi knows no one outside her family and the administration gives a shit or pays attention to her, so I'm not sure who they think she is "acting" for... and the accommodations she needs for swimming and academics only significantly complicate her life. And if they think it is fun for her to struggle not to keel over face first after every race, or for either of us to have to constantly explain to timers and officials why she is keeling and why I am trying to reach her before she falls on her head, they're wrong... and if they think we don't both know what they're saying, they're also wrong.... but what should I do, as a parent... let my staggering, in pain, addled child struggle on her own so as not to overly "dramatize" the situation, or take care of her knowing full well we're being judged?
If I sound angry, I am. Being a teenager is difficult enough. Dealing with what my kids have been forced to deal with compounds that difficulty. Seeing first hand as a teen the realities of how self absorbed and limited in attention span and ability to empathize most of our population is is just.... not fair.
Like I said to two of the girls last week when we were working to contain the fall out from the boy's actions, I really hope they never have to deal with something like Lexi has had to deal with, where their supposed friends and teammates don't want to be bothered with them and they are left on their own to struggle, or, worse, have backs turned on them or ridicule directed at them.
Eventually I believe we all go through something that requires the patience and empathy of those around us. And I sincerely hope we each get back the exact amount of care and concern and patience we have shown to others.
Dogs, because people suck.
23 February 2016
15 October 2015
Lexi update
First quarter of L's junior year is racing to a close. Thanks, most likely, to TBI #4 in June, Lexi began this year on shaky ground. After a couple of days of classes we (Team Lexi, defined as a herd of adults at Bolles and me/Matthew) agreed that she should drop her Honors Physics class, thus giving her a favorable schedule. AP Comp Gov, study hall, Honors PreCalc, AP Eng Lang, lunch, "office aid" (essentially a study hall but with more freedom to rest) and Adv conversational Spanish. She may add in another class next semester, but we will decide that at Christmas break.
Her ever kind and supportive swim coach also agreed to let Lexi swim her morning practices on her own at LAF. This allows her to sleep an extra 90 minutes and still get her swim in and to school on time, and has enabled her to make probably 90% of the morning practices. If she had to get up at 4:45a, swim and do dryland (difficult because of blaring music) and then make it through a full day of classes, followed by another practice and then homework... it wasn't going to work. At all. So we shoe-horn practices in, as often as we can in the mornings and sometimes at lunch.
The admin at school continues to be fantastic, as they've set up a system for her that gives her extra time for assessments AND ensures that she doesn't have multiple tests on the same day. She made the mistake of trying that once and got slaughtered in the second test and ended up coming home with an awful aura and nausea filled migraine. Her teacher graciously waved the test grade, which made me cry. The number of adults working to give Lexi a chance to neutralize the negative impact of these TBIs and achieve success is astounding. Of course, all they can do is give her the opening - SHE is also busting her a** to walk through it and accomplish her goals.
Under the sage guidance of the learning specialist at school and the wonderful assistance of Lexi's mayo Dr. we are submitting the documentation to the College Board people to seek extra time for her on the SAT test and AP exams. I've never been THAT person (I hate asking for special treatment) but am to the point where I will accept any accommodation people care to offer for Lexi. And as the swim people know, will also ask for help too. Lexi just learned that, although she rehabbed her grades fantastically last spring, she is a couple of tenths off the cut off for NHS membership right now (if I understand it all correctly, she needs a 3.9 in the Bolles world, and she has a 3.88...) but she has a chance to recoup those .02 points this semester. At the midquarter she was sporting all A-, which is fantastic. She is still the very bright young lady she was before the 4 TBIs, but she needs a bit more time to get it all out there.
Her swimming has been going very well. She's posted times in-season that are faster than she's ever swum in-season, and has regained most of her fitness. She still pays a fantastic price after races, but has learned to manage it while in the water. Not so much once she exits the pool and looks not unlike a jellyfish flopping into a chair. One step at a time. She just found out she will swim her favorite two events in the state series, which was a huge boost. This is, of course, the "big" year academically and athletically for the college search, and she has heard from a bunch of schools... but she is in a bit of a holding pattern while she waits to see how this short course season turns out. With a taper meet at states (hopefully), another one in Dec., and then her final short course meet in March, she has three chances to state her case. Of course one of them is at Gator, where this whole mess began last December. Lexi finds special motivation in giving the metaphorical middle finger to situations, so that will be interesting.
So those are the quantifiable things. The emotional and physical side of this equation have been a bit of a rollercoaster.
Lexi decided to try a med combo -- amantadine, which she's been on before, and nortryptaline, which she tried briefly 4 years ago and did not care for at all. The latter was supposed to help with sleep and anxiety and the headaches. It did not help with the former, definitely helped with the middle, and jury is out on the latter. Lexi decided to titrate off of it this week because of the sleep situation and some odd numbness during her swimming that she believes correlates to that drug. We go back to Mayo tomorrow to discuss alternatives. And she has a neurology appointment at Nemours next week to discuss other options as well.
The headaches continue. Some days are much better than others and some are much worse. I believe that she is improving gradually. There are days when I would expect her to be kicked-in-the-head brain dead and she is not. She is handling longer stretches of studying and homework. She still looks like a bruised-eyed zombie many nights before she heads to sleep, but at least it's not 3p most days when she looks like that.
Most people assume she is fine now, which of course she is not. The struggle is well known to Team Lexi, but outsiders always seem to be surprised. That can be pretty annoying, truth be told. People who don't know the story tend to look at her like she is a freak when she does the flop and crash after a swim at a meet, and sometimes none of us feels like giving much of an explanation. Her teammates have, for the most part, long forgotten (if they knew in the first place). But, thanks to the fantastic support crew of adults in her life, I think Lexi feels a sense of equilibrium right now. Sometimes we fall out of the sweet spot, but (with a few disastrous exceptions) she, and we, are doing a killer job of keeping a balance of sleep, nutrition, academics and swimming. If you've read my curling-as-parenting analogy, you'll understand when I say sometimes I feel like I'm sweeping like a drunken sailor, without the benefit of the alcohol lol.
On we go.
Her ever kind and supportive swim coach also agreed to let Lexi swim her morning practices on her own at LAF. This allows her to sleep an extra 90 minutes and still get her swim in and to school on time, and has enabled her to make probably 90% of the morning practices. If she had to get up at 4:45a, swim and do dryland (difficult because of blaring music) and then make it through a full day of classes, followed by another practice and then homework... it wasn't going to work. At all. So we shoe-horn practices in, as often as we can in the mornings and sometimes at lunch.
The admin at school continues to be fantastic, as they've set up a system for her that gives her extra time for assessments AND ensures that she doesn't have multiple tests on the same day. She made the mistake of trying that once and got slaughtered in the second test and ended up coming home with an awful aura and nausea filled migraine. Her teacher graciously waved the test grade, which made me cry. The number of adults working to give Lexi a chance to neutralize the negative impact of these TBIs and achieve success is astounding. Of course, all they can do is give her the opening - SHE is also busting her a** to walk through it and accomplish her goals.
Under the sage guidance of the learning specialist at school and the wonderful assistance of Lexi's mayo Dr. we are submitting the documentation to the College Board people to seek extra time for her on the SAT test and AP exams. I've never been THAT person (I hate asking for special treatment) but am to the point where I will accept any accommodation people care to offer for Lexi. And as the swim people know, will also ask for help too. Lexi just learned that, although she rehabbed her grades fantastically last spring, she is a couple of tenths off the cut off for NHS membership right now (if I understand it all correctly, she needs a 3.9 in the Bolles world, and she has a 3.88...) but she has a chance to recoup those .02 points this semester. At the midquarter she was sporting all A-, which is fantastic. She is still the very bright young lady she was before the 4 TBIs, but she needs a bit more time to get it all out there.
Her swimming has been going very well. She's posted times in-season that are faster than she's ever swum in-season, and has regained most of her fitness. She still pays a fantastic price after races, but has learned to manage it while in the water. Not so much once she exits the pool and looks not unlike a jellyfish flopping into a chair. One step at a time. She just found out she will swim her favorite two events in the state series, which was a huge boost. This is, of course, the "big" year academically and athletically for the college search, and she has heard from a bunch of schools... but she is in a bit of a holding pattern while she waits to see how this short course season turns out. With a taper meet at states (hopefully), another one in Dec., and then her final short course meet in March, she has three chances to state her case. Of course one of them is at Gator, where this whole mess began last December. Lexi finds special motivation in giving the metaphorical middle finger to situations, so that will be interesting.
So those are the quantifiable things. The emotional and physical side of this equation have been a bit of a rollercoaster.
Lexi decided to try a med combo -- amantadine, which she's been on before, and nortryptaline, which she tried briefly 4 years ago and did not care for at all. The latter was supposed to help with sleep and anxiety and the headaches. It did not help with the former, definitely helped with the middle, and jury is out on the latter. Lexi decided to titrate off of it this week because of the sleep situation and some odd numbness during her swimming that she believes correlates to that drug. We go back to Mayo tomorrow to discuss alternatives. And she has a neurology appointment at Nemours next week to discuss other options as well.
The headaches continue. Some days are much better than others and some are much worse. I believe that she is improving gradually. There are days when I would expect her to be kicked-in-the-head brain dead and she is not. She is handling longer stretches of studying and homework. She still looks like a bruised-eyed zombie many nights before she heads to sleep, but at least it's not 3p most days when she looks like that.
Most people assume she is fine now, which of course she is not. The struggle is well known to Team Lexi, but outsiders always seem to be surprised. That can be pretty annoying, truth be told. People who don't know the story tend to look at her like she is a freak when she does the flop and crash after a swim at a meet, and sometimes none of us feels like giving much of an explanation. Her teammates have, for the most part, long forgotten (if they knew in the first place). But, thanks to the fantastic support crew of adults in her life, I think Lexi feels a sense of equilibrium right now. Sometimes we fall out of the sweet spot, but (with a few disastrous exceptions) she, and we, are doing a killer job of keeping a balance of sleep, nutrition, academics and swimming. If you've read my curling-as-parenting analogy, you'll understand when I say sometimes I feel like I'm sweeping like a drunken sailor, without the benefit of the alcohol lol.
On we go.
14 August 2015
Back to school...
It has been a while.
I last wrote in April as Lexi was about to swim her first large meet since the accident in the warm down pool last December.
I was right to be afraid. Unfortunately, my fears were realized NOT because of events naturally occurring during the course of a swim meet/crowded warm down pool, but instead because of the idiotic, infuriating actions of two 18+yo swimmers. Two kids (who should have known better) rough-housing around the edge of the pool during a meet warm down added to our own personal hell when one pushed the probably 200lb girl in on top of Lexi, and the college girl's knee hit Lexi in the head.
That's an anger that doesn't go away easily, especially when there was zero remorse from the "kids", and even MORE especially when one of the same kids was doing a g**d**n chicken fight in the middle of the warm down pool at the next meet.
That's an anger that eats at my stomach lining late at night, as I worry about whether our very smart, very driven daughter is going to be able to carry a full course load this semester during her junior year of HS (aka, the most important year academically AND athletically). While some smug ass kids move on with their lives, and most of the friends, teammates, and adults in Lexi's world move along assuming things are fine in HER life, Matthew, Christi and I are the ones who have to see Lexi's pain and struggle continue.
She tries to hide it well, because she knows in this instant gratification, snapchat sized snippet driven world most people have no patience for long term issues. Having heard teammates whisper that she is making up the effects of the concussions, Lexi is super cautious about trying not to be "special needs"... but the reality is, she is going to need help and understanding for the foreseeable future.
So with school rapidly approaching the harsh reality that she is not 100%, or even close to it, is like a sucker punch to the gut. I never imagined another round of meetings with admin and advisors and learning specialists at school, or that I'd be advocating for her to be able to drop a class and make it up online or locally over the summer. She is stubbornly insisting on trying her loaded schedule for a week (AP Lang, AP Comp Gov, Honors Pre-Calc, Honors Physics, Spanish IV) to see if she has a prayer of juggling 9 swim practices a week, plus academics, with a brain that needs more sleep than normal kids AND plenty of rest breaks during the day, neither of which is going to be easy to come by during HS season, at least.
I try not to be bitter, or overtly angry, at the situation, because it doesn't change it and won't help fix it... but boy if I could cold cock the punk who set us back months and then had the insolence to try and tell people Lexi was making it up, I would. I also spin helplessly trying to come up with new ideas for people to talk to or ways to "fix" the situation, but am coming up blank. Short of hoofing all over the place polling neurologists and TBI specialists, which we won't have time to do once school starts, there is really nothing I can do right now. We rode the UPMC line as far as it can take us, IMO, and other than trying different meds (which is an awful process when you don't have days or weeks or months to waste feeling drugged or impaired or sleepy or wired in hopes it helps the headaches) or shutting her down completely I don't know what else we can do.
So now we start the process of watching, waiting, and planning options for school, while Matthew and I hold our breath and try to help Lexi deal with a schedule that is demanding enough for a fully functioning teen, never mind one who has to deal with what Lexi does on a daily basis. (And I just found out that taking a class on-line isn't an option, sigh...).
On we go.
I last wrote in April as Lexi was about to swim her first large meet since the accident in the warm down pool last December.
I was right to be afraid. Unfortunately, my fears were realized NOT because of events naturally occurring during the course of a swim meet/crowded warm down pool, but instead because of the idiotic, infuriating actions of two 18+yo swimmers. Two kids (who should have known better) rough-housing around the edge of the pool during a meet warm down added to our own personal hell when one pushed the probably 200lb girl in on top of Lexi, and the college girl's knee hit Lexi in the head.
That's an anger that doesn't go away easily, especially when there was zero remorse from the "kids", and even MORE especially when one of the same kids was doing a g**d**n chicken fight in the middle of the warm down pool at the next meet.
That's an anger that eats at my stomach lining late at night, as I worry about whether our very smart, very driven daughter is going to be able to carry a full course load this semester during her junior year of HS (aka, the most important year academically AND athletically). While some smug ass kids move on with their lives, and most of the friends, teammates, and adults in Lexi's world move along assuming things are fine in HER life, Matthew, Christi and I are the ones who have to see Lexi's pain and struggle continue.
She tries to hide it well, because she knows in this instant gratification, snapchat sized snippet driven world most people have no patience for long term issues. Having heard teammates whisper that she is making up the effects of the concussions, Lexi is super cautious about trying not to be "special needs"... but the reality is, she is going to need help and understanding for the foreseeable future.
So with school rapidly approaching the harsh reality that she is not 100%, or even close to it, is like a sucker punch to the gut. I never imagined another round of meetings with admin and advisors and learning specialists at school, or that I'd be advocating for her to be able to drop a class and make it up online or locally over the summer. She is stubbornly insisting on trying her loaded schedule for a week (AP Lang, AP Comp Gov, Honors Pre-Calc, Honors Physics, Spanish IV) to see if she has a prayer of juggling 9 swim practices a week, plus academics, with a brain that needs more sleep than normal kids AND plenty of rest breaks during the day, neither of which is going to be easy to come by during HS season, at least.
I try not to be bitter, or overtly angry, at the situation, because it doesn't change it and won't help fix it... but boy if I could cold cock the punk who set us back months and then had the insolence to try and tell people Lexi was making it up, I would. I also spin helplessly trying to come up with new ideas for people to talk to or ways to "fix" the situation, but am coming up blank. Short of hoofing all over the place polling neurologists and TBI specialists, which we won't have time to do once school starts, there is really nothing I can do right now. We rode the UPMC line as far as it can take us, IMO, and other than trying different meds (which is an awful process when you don't have days or weeks or months to waste feeling drugged or impaired or sleepy or wired in hopes it helps the headaches) or shutting her down completely I don't know what else we can do.
So now we start the process of watching, waiting, and planning options for school, while Matthew and I hold our breath and try to help Lexi deal with a schedule that is demanding enough for a fully functioning teen, never mind one who has to deal with what Lexi does on a daily basis. (And I just found out that taking a class on-line isn't an option, sigh...).
On we go.
24 April 2015
Back in the scrum she goes...
So it has now been over 4.5 months since L got her latest concussion. The effects still permeate her day. But she has fought her way back yard by yard to get into some semblance of swimming shape, and to get to the point where she completes probably 90% of each practice.
And today she will swim in her first meet since she got clocked in the forehead in the warm down pool at UF.
Which means she will be a part of the chaotic scrum that is warm up and the warm down pool. The mass start at Ironman Florida is nothing compared to that churn. At least at IMFL everyone is going in the same direction, more or less. Any given lane in warm down has: 5 people bobbing up and down at the end of the lane, sometimes to the side, sometimes not; 4 people who don't care how close a swimmer is to turning, they're gonna push off NOW; a half dozen people doing some form of kick, one oversized bully swimming down the middle of the lane over people; one terminally SLOW person who doesn't know how slow he is clogging up the middle; 3 people jumping in and 3 people slowly climbing out; 2 people who inexplicably stop half way down the pool to talk, turn around, or stand there; etc. All going in different directions and at different speeds in different strokes and with different levels of experience, expertise, and/or common sense.
And into that we are sending the egg-shell tough skull attached to our daughter.
(Insert green emoji face barfing here...)
Part of me wants to go hover over her lane, even though all that buys me is a front row seat if something happens... it doesn't stop anything from happening.
Part of me wants to put her in a helmet.
Part of me wants to make her quit swimming and take up running, or knitting.
Part of me wants to demand that every pool we go to clear a complete lane for her and any other kid with a pre-existing TBI to warm up and down in (ok, MOST of me wants to do that... why NOT take initiative and create a safe zone for these kids... surely L is not the only one out there in the swimming world...).
And all of me just wants to wrap her in some kind of bubble wrap, or force field, or something, so that she (and we) never has to endure this nightmare again... because each time the stakes are higher and the effects more frightening.
So as happy as I am for her to finally get to swim in a meet again is as terrified as I am that something will happen again, as irrational as that may be. What happened in Gainesville was a fluke, frankly -- a random occurrence that we probably couldn't duplicate if we tried to stage it to do so. But once you realize that random stuff happens, and once it happens to your kid, those doubts creep in and your blissful ignorance dissipates, and you start seeing possible head injuries in every shadow.
I've always been an "ah, what's the worst that can happen" kind of person, but that attitude straightens up quickly when the answer is "long term brain damage" or "chronic headaches" for my daughter.
And yes, I know that she could get another TBI basically anywhere. Heck, Kaito clocked me so hard in the temple the other day that I had a headache for two days. If that had been L, we'd be in a dark room again, using Kaito's pelt as a throw blanket. So, random events happen, and we can't live life cowering in fear of them.
I'm sure the knot in my stomach will lessen as time passes and brain function remains undisturbed by any errant kicks or dumba**es swimming down the wrong side of the lane or careless kids just messing around. But for now...
On we go.
And today she will swim in her first meet since she got clocked in the forehead in the warm down pool at UF.
Which means she will be a part of the chaotic scrum that is warm up and the warm down pool. The mass start at Ironman Florida is nothing compared to that churn. At least at IMFL everyone is going in the same direction, more or less. Any given lane in warm down has: 5 people bobbing up and down at the end of the lane, sometimes to the side, sometimes not; 4 people who don't care how close a swimmer is to turning, they're gonna push off NOW; a half dozen people doing some form of kick, one oversized bully swimming down the middle of the lane over people; one terminally SLOW person who doesn't know how slow he is clogging up the middle; 3 people jumping in and 3 people slowly climbing out; 2 people who inexplicably stop half way down the pool to talk, turn around, or stand there; etc. All going in different directions and at different speeds in different strokes and with different levels of experience, expertise, and/or common sense.
And into that we are sending the egg-shell tough skull attached to our daughter.
(Insert green emoji face barfing here...)
Part of me wants to go hover over her lane, even though all that buys me is a front row seat if something happens... it doesn't stop anything from happening.
Part of me wants to put her in a helmet.
Part of me wants to make her quit swimming and take up running, or knitting.
Part of me wants to demand that every pool we go to clear a complete lane for her and any other kid with a pre-existing TBI to warm up and down in (ok, MOST of me wants to do that... why NOT take initiative and create a safe zone for these kids... surely L is not the only one out there in the swimming world...).
And all of me just wants to wrap her in some kind of bubble wrap, or force field, or something, so that she (and we) never has to endure this nightmare again... because each time the stakes are higher and the effects more frightening.
So as happy as I am for her to finally get to swim in a meet again is as terrified as I am that something will happen again, as irrational as that may be. What happened in Gainesville was a fluke, frankly -- a random occurrence that we probably couldn't duplicate if we tried to stage it to do so. But once you realize that random stuff happens, and once it happens to your kid, those doubts creep in and your blissful ignorance dissipates, and you start seeing possible head injuries in every shadow.
I've always been an "ah, what's the worst that can happen" kind of person, but that attitude straightens up quickly when the answer is "long term brain damage" or "chronic headaches" for my daughter.
And yes, I know that she could get another TBI basically anywhere. Heck, Kaito clocked me so hard in the temple the other day that I had a headache for two days. If that had been L, we'd be in a dark room again, using Kaito's pelt as a throw blanket. So, random events happen, and we can't live life cowering in fear of them.
I'm sure the knot in my stomach will lessen as time passes and brain function remains undisturbed by any errant kicks or dumba**es swimming down the wrong side of the lane or careless kids just messing around. But for now...
On we go.
21 March 2015
Meds meds meds
I think that meds can be very useful. I also think that meds can create issues that were never there in the first place, and can cause one to end up chasing one's tail after each new issue... to the point that you become far removed from the original issue you took the meds for in the first place.
L is a fairly typical teen in that she has her mood swings. She's also very very sensitive, and very introspective. And she hates to be anything but perfect, or at least perceived as anything but perfect. She'll also probably be irked I am writing about this, but, hey, it's my damn blog so tough. :-) In this family we own our quirks and flaws just as much as the positives.
I've worried over the past years how everything has and will affect her. Her bio father's disappearance during her first concussion, the many MANY issues that followed in dealing with him, the emotions she HAS to have somewhere about that relationship, the surgeries, and typical teen stuff... all of it adds up. Chronic pain changes people. Feeling isolated or rejected or prevented from pursuing goals changes people. Eleven, twelve, thirteen year old kids, even fifteen year olds, are not equipped to process and handle everything she's been asked to deal with... and even though I feel good about how Matthew and I have supported, talked, listened, hugged, pointedly asserted and otherwise guided them through all of this, the reality is, none of us are equipped to deal with what we've faced as a family these past 6 years.
But, I think on the whole we've come through... THEY'VE come through... stronger, more self-aware, more resilient. And, theoretically, able to identify and address any unexpected emotional glitches or pre-dispositions that manifest down the road.
When L tried the amitryptaline after the first concussion, it was ugly. She was to take it before bed, and if she did not fall asleep before the med kicked in, it was like interacting with an argumentative drunk (you know how it is: they are 100% certain in the intelligence and accuracy of what they are saying, all the while they are making exactly zero sense... and there is no way to de-escalate the situation because if you don't talk they'll keep coming after you and if you DO try to reason with them their complete irrationality takes over). She'd wake up in the morning knowing she'd been really angry and trying to fight with me but having NO idea why or about what. It was awful, and it didn't help with the symptoms.
I've also heard, and personally seen, horror stories about people getting off of Zoloft.
So in thinking about the two options (propranolol and zoloft) and talking to M, my friend who is a pharmacist, my sister, and L's regular Mayo physician, I decided to go against what Dr. C recommended and go with the MD's original choice, and we started on the propranolol. I haven't told UPMC yet, as I am waiting to see what happens with it. Yesterday was her second full dose after a week of half dosage. She had some side effects a few days during the single dose, including feeling disconnected and unfocused one day with kind of racing thoughts... but it was better the next day.
Now, yesterday she had what I consider a more serious side effect in that she felt like her body wasn't getting enough oxygen while she was swimming, and felt extremely weak. Like, pass-out weak. This is definitely a side effect of the prop to be concerned about, as it is actually a banned performance enhancing drug used by archers etc to slow their heart rate during competitions. That may work well for such a calm sport, but us swimmers NEED the heart to crank it up when we exert ourselves, or our body won't get what it needs to keep going.
So we will give it another few days to see if the side effects fade and any positive effects kick in... and if not, then I will wean her off of it. We discussed trying the zoloft if this doesn't work, and she and I agreed we don't want to do that. She'd rather deal with the headaches. And we can pursue the biofeedback and some other relaxation techniques to help with her self-imposed pressure etc.
This puts us in the position of having chosen NOT to take the main recommendation of the foremost concussion guru. And not having told him yet that we are following our instincts instead of his. Awkward.
I deeply respect doctors, and I admire what these guys are doing. But, as with any doctor (or anyONE, really) I also believe that people bring a paradigm to the table that they seek to follow or confirm. Each time we have been to UPMC one focus of the questions has been whether L's thoughts are making her symptoms worse. I know that they strongly believe in the mental component of PCS... isolation, dark thoughts, anxiety, stress, etc. And I 100% agree that that is an important aspect. But, I also believe that we are more equipped than the average person to deal with those aspects externally, rather than through medication. Our relationship with L is not the typical parent-teen relationship, and I know a lot more about this psychological stuff than most other laymen do, unfortunately.
So, we are going to keep pushing with the vestibular and exertional rehab, and give the propranolol another week or so (unless the side effects get too bad first). L is making definite, albeit slow, progress. Her grades are slowly improving. Her headache levels are taking longer to rise, not getting AS high, and dropping faster. She is back in the pool on a limited basis, although the effects of the prop may limit it more than we had anticipated.
But we are going to pass on the Zoloft. And maybe that makes us undesirable patients. But I've got to be a mother first, and my mother compass emphatically says "NO".
On we go.
L is a fairly typical teen in that she has her mood swings. She's also very very sensitive, and very introspective. And she hates to be anything but perfect, or at least perceived as anything but perfect. She'll also probably be irked I am writing about this, but, hey, it's my damn blog so tough. :-) In this family we own our quirks and flaws just as much as the positives.
I've worried over the past years how everything has and will affect her. Her bio father's disappearance during her first concussion, the many MANY issues that followed in dealing with him, the emotions she HAS to have somewhere about that relationship, the surgeries, and typical teen stuff... all of it adds up. Chronic pain changes people. Feeling isolated or rejected or prevented from pursuing goals changes people. Eleven, twelve, thirteen year old kids, even fifteen year olds, are not equipped to process and handle everything she's been asked to deal with... and even though I feel good about how Matthew and I have supported, talked, listened, hugged, pointedly asserted and otherwise guided them through all of this, the reality is, none of us are equipped to deal with what we've faced as a family these past 6 years.
But, I think on the whole we've come through... THEY'VE come through... stronger, more self-aware, more resilient. And, theoretically, able to identify and address any unexpected emotional glitches or pre-dispositions that manifest down the road.
When L tried the amitryptaline after the first concussion, it was ugly. She was to take it before bed, and if she did not fall asleep before the med kicked in, it was like interacting with an argumentative drunk (you know how it is: they are 100% certain in the intelligence and accuracy of what they are saying, all the while they are making exactly zero sense... and there is no way to de-escalate the situation because if you don't talk they'll keep coming after you and if you DO try to reason with them their complete irrationality takes over). She'd wake up in the morning knowing she'd been really angry and trying to fight with me but having NO idea why or about what. It was awful, and it didn't help with the symptoms.
I've also heard, and personally seen, horror stories about people getting off of Zoloft.
So in thinking about the two options (propranolol and zoloft) and talking to M, my friend who is a pharmacist, my sister, and L's regular Mayo physician, I decided to go against what Dr. C recommended and go with the MD's original choice, and we started on the propranolol. I haven't told UPMC yet, as I am waiting to see what happens with it. Yesterday was her second full dose after a week of half dosage. She had some side effects a few days during the single dose, including feeling disconnected and unfocused one day with kind of racing thoughts... but it was better the next day.
Now, yesterday she had what I consider a more serious side effect in that she felt like her body wasn't getting enough oxygen while she was swimming, and felt extremely weak. Like, pass-out weak. This is definitely a side effect of the prop to be concerned about, as it is actually a banned performance enhancing drug used by archers etc to slow their heart rate during competitions. That may work well for such a calm sport, but us swimmers NEED the heart to crank it up when we exert ourselves, or our body won't get what it needs to keep going.
So we will give it another few days to see if the side effects fade and any positive effects kick in... and if not, then I will wean her off of it. We discussed trying the zoloft if this doesn't work, and she and I agreed we don't want to do that. She'd rather deal with the headaches. And we can pursue the biofeedback and some other relaxation techniques to help with her self-imposed pressure etc.
This puts us in the position of having chosen NOT to take the main recommendation of the foremost concussion guru. And not having told him yet that we are following our instincts instead of his. Awkward.
I deeply respect doctors, and I admire what these guys are doing. But, as with any doctor (or anyONE, really) I also believe that people bring a paradigm to the table that they seek to follow or confirm. Each time we have been to UPMC one focus of the questions has been whether L's thoughts are making her symptoms worse. I know that they strongly believe in the mental component of PCS... isolation, dark thoughts, anxiety, stress, etc. And I 100% agree that that is an important aspect. But, I also believe that we are more equipped than the average person to deal with those aspects externally, rather than through medication. Our relationship with L is not the typical parent-teen relationship, and I know a lot more about this psychological stuff than most other laymen do, unfortunately.
So, we are going to keep pushing with the vestibular and exertional rehab, and give the propranolol another week or so (unless the side effects get too bad first). L is making definite, albeit slow, progress. Her grades are slowly improving. Her headache levels are taking longer to rise, not getting AS high, and dropping faster. She is back in the pool on a limited basis, although the effects of the prop may limit it more than we had anticipated.
But we are going to pass on the Zoloft. And maybe that makes us undesirable patients. But I've got to be a mother first, and my mother compass emphatically says "NO".
On we go.
UPMC trip #3
This is a little delayed. I blame C for having surgery on both feet lol.
We went to Pitt for the 3rd time last week, We arrived around midnight March 9th, Enjoyed a visit with my old (yes, in all senses of the word hahaha) friend from school and her husband (and adorable dog, but missed her equally adorable son, sadly), appointments in the afternoon on the 10th and the morning of the 11th, enjoyed a wonderful semi-surprise visit from my sister, b-i-l, and niece (10 hour round trip for 3 hours of face time... questionable sanity but major props for effort lol) and flew home, arriving after 11p.
This visit was a little less productive and kind of confusing, truth be told. L took the IMPACT test for the 4th time since december. We met with Dr. Pierce, the big gun's minion, and she gave us the results of the test and discussed L's symptoms and progress etc. L improved again in all measures of the test, and Dr. P told her that she was now in "normal" ranges. That was a bit of a surprise to L, who certainly does not feel normal and probably is not scoring "normally" for her (but alas we don't know what is normal for her, as we don't have a valid pre-concussion baseline). I could tell from the angle of Dr. P's questions where they were heading in terms of next treatment step, but decided to just listen and watch.
Next we met with the big guy, Dr. Collins, and Dr. Pierce together. He asked L a lot of questions about whether she was having trouble turning her thoughts off, or not focusing on her symptoms. He asked her how important swimming is to her on a scale of 1-10 --- "8" -- and then asked her if swimming is 8, what is 10. L cracked us all up by deadpanning "food". Collins told us that he believes that the headaches are being exacerbated by stress and tension and anxiety L is unwittingly putting on herself over academics and swimming etc. I think he is probably correct. I also think there can be an interesting chicken/egg debate on that, as the headaches are causing the stress, imo, and I think eliminating them eliminates the stress. Not so much vice-versa, imo.
Last visit we were told that L needed to back off. They wanted her to stop swimming and put her on Amantadine to try and break the migraine cycle. She probably only had a headache that crossed into PC migraine twice after that. Of course there is no way to know if it was the lack of swimming, the meds, time, or some combo of the three. Now this time Dr. C indicated that he believed L not swimming etc was part of the problem, and told her he wants her back in the pool. It was very confusing to L, who wasn't getting the difference and felt it was contradictory.
Worse, L took what Dr. C was saying about the headaches being exacerbated by her emotional state, as he perceived it, to mean that her symptoms are all in her head. This led to a very emotionally raw and angry L as we headed into the appointment with the MD. I tried to find Dr. C or Dr. P to ask them to explain what they meant, but they'd already zoomed on to the next patient.
Dr. C had told us, as we headed to the MD, that he thought there was a perfect second med to try in combo with the amantadine, and that he felt confident it would help a lot with the headaches under these circumstances. Dr. Woods, the MD, laid out three possible options (none of which, as it turned out, were the one Dr. C had been thinking of...): 1. meds used to treat ADD and ADHD, which she said don't affect kids without aDHD the same way. I'm thinking, if they turn HYPER kids into drugged zombies, WTF would they do to L? My NFW face shut that one down quickly. 2. Propranolol, which was originally designed for other stuff but has had success in cutting down on headaches in people with migraines and PCS. My sister tried it for her insanely awful chronic migraines but had to stop it because it lowered her already low BP and made her lightheaded and dizzy and pass-outy. 3. some sort of "tryptaline" that wasn't the one she'd been briefly on during PCS1 four years ago. An antidepressant that helped with sleep and had some effectiveness on PCS headaches.
She asked L a bunch of questions and we asked her what she would recommend for her own daughter. She said the Propranolol, and after we discussed side effects and withdrawal etc, we agreed that would be worth trying.
As we were leaving L ran into Dr. C while waiting for me, and he asked her what Dr. W had prescribed. When L told him, she said she could tell he wasn't happy. Interesting.
The next day we had appointments with Dr. Mucha ( the vestibular lady), and the exertion therapy doctor. Anne (Mucha) has to be one the nicest people we've met. She adjusted L's exercises and surprised her by finding an image of Channing Tatum and printing it out as L's eye target (instead of a boring X) for her. We saw her sandwiched between trips to the PT room, where L did treadmill and elliptical and some dryland assessments, and then was brought back to try "swimming"... in a very, very small 98' pool lol.
The exertion gal wrote up a return to swimming plan that didn't quite meet up with what Collins told L he wanted her to do (one was in the hundreds of yards, using a "paddle board" lol and one was "full speed ahead, but don't do too much too soon"). L was even more confused at this point.
We went back upstairs and met for the wrap up with Dr. C and Dr. P. I do believe Dr. C does really have a handle on L's emotional make-up and personality, and much of what he said, even 99%, is very valid and accurate. But. He told us that he'd talked to Dr. W and they were changing the med prescription to Zoloft. (At this point the prop had already been filled by M at home.) He said it would take up to 4 weeks to see results but that he felt it was the best med to address the anxiety and stress exacerbated headaches he believes L is experiencing.
He addressed L's concerns about the symptoms being "in her head" and explained what I had told her too -- that your thoughts and emotions can make the underlying issue worse, NOT that she is imagining the problem.
We talked some more, he encouraged L and told her he was confident this would all resolve, and we wrapped up.
When we got home we had a bottle of Propranolol and a bottle of Zoloft waiting for us, and a decision to make.
To be continued...
http://fycatd1.blogspot.com/2015/03/meds-meds-meds.html
We went to Pitt for the 3rd time last week, We arrived around midnight March 9th, Enjoyed a visit with my old (yes, in all senses of the word hahaha) friend from school and her husband (and adorable dog, but missed her equally adorable son, sadly), appointments in the afternoon on the 10th and the morning of the 11th, enjoyed a wonderful semi-surprise visit from my sister, b-i-l, and niece (10 hour round trip for 3 hours of face time... questionable sanity but major props for effort lol) and flew home, arriving after 11p.
This visit was a little less productive and kind of confusing, truth be told. L took the IMPACT test for the 4th time since december. We met with Dr. Pierce, the big gun's minion, and she gave us the results of the test and discussed L's symptoms and progress etc. L improved again in all measures of the test, and Dr. P told her that she was now in "normal" ranges. That was a bit of a surprise to L, who certainly does not feel normal and probably is not scoring "normally" for her (but alas we don't know what is normal for her, as we don't have a valid pre-concussion baseline). I could tell from the angle of Dr. P's questions where they were heading in terms of next treatment step, but decided to just listen and watch.
Next we met with the big guy, Dr. Collins, and Dr. Pierce together. He asked L a lot of questions about whether she was having trouble turning her thoughts off, or not focusing on her symptoms. He asked her how important swimming is to her on a scale of 1-10 --- "8" -- and then asked her if swimming is 8, what is 10. L cracked us all up by deadpanning "food". Collins told us that he believes that the headaches are being exacerbated by stress and tension and anxiety L is unwittingly putting on herself over academics and swimming etc. I think he is probably correct. I also think there can be an interesting chicken/egg debate on that, as the headaches are causing the stress, imo, and I think eliminating them eliminates the stress. Not so much vice-versa, imo.
Last visit we were told that L needed to back off. They wanted her to stop swimming and put her on Amantadine to try and break the migraine cycle. She probably only had a headache that crossed into PC migraine twice after that. Of course there is no way to know if it was the lack of swimming, the meds, time, or some combo of the three. Now this time Dr. C indicated that he believed L not swimming etc was part of the problem, and told her he wants her back in the pool. It was very confusing to L, who wasn't getting the difference and felt it was contradictory.
Worse, L took what Dr. C was saying about the headaches being exacerbated by her emotional state, as he perceived it, to mean that her symptoms are all in her head. This led to a very emotionally raw and angry L as we headed into the appointment with the MD. I tried to find Dr. C or Dr. P to ask them to explain what they meant, but they'd already zoomed on to the next patient.
Dr. C had told us, as we headed to the MD, that he thought there was a perfect second med to try in combo with the amantadine, and that he felt confident it would help a lot with the headaches under these circumstances. Dr. Woods, the MD, laid out three possible options (none of which, as it turned out, were the one Dr. C had been thinking of...): 1. meds used to treat ADD and ADHD, which she said don't affect kids without aDHD the same way. I'm thinking, if they turn HYPER kids into drugged zombies, WTF would they do to L? My NFW face shut that one down quickly. 2. Propranolol, which was originally designed for other stuff but has had success in cutting down on headaches in people with migraines and PCS. My sister tried it for her insanely awful chronic migraines but had to stop it because it lowered her already low BP and made her lightheaded and dizzy and pass-outy. 3. some sort of "tryptaline" that wasn't the one she'd been briefly on during PCS1 four years ago. An antidepressant that helped with sleep and had some effectiveness on PCS headaches.
She asked L a bunch of questions and we asked her what she would recommend for her own daughter. She said the Propranolol, and after we discussed side effects and withdrawal etc, we agreed that would be worth trying.
As we were leaving L ran into Dr. C while waiting for me, and he asked her what Dr. W had prescribed. When L told him, she said she could tell he wasn't happy. Interesting.
The next day we had appointments with Dr. Mucha ( the vestibular lady), and the exertion therapy doctor. Anne (Mucha) has to be one the nicest people we've met. She adjusted L's exercises and surprised her by finding an image of Channing Tatum and printing it out as L's eye target (instead of a boring X) for her. We saw her sandwiched between trips to the PT room, where L did treadmill and elliptical and some dryland assessments, and then was brought back to try "swimming"... in a very, very small 98' pool lol.
The exertion gal wrote up a return to swimming plan that didn't quite meet up with what Collins told L he wanted her to do (one was in the hundreds of yards, using a "paddle board" lol and one was "full speed ahead, but don't do too much too soon"). L was even more confused at this point.
We went back upstairs and met for the wrap up with Dr. C and Dr. P. I do believe Dr. C does really have a handle on L's emotional make-up and personality, and much of what he said, even 99%, is very valid and accurate. But. He told us that he'd talked to Dr. W and they were changing the med prescription to Zoloft. (At this point the prop had already been filled by M at home.) He said it would take up to 4 weeks to see results but that he felt it was the best med to address the anxiety and stress exacerbated headaches he believes L is experiencing.
He addressed L's concerns about the symptoms being "in her head" and explained what I had told her too -- that your thoughts and emotions can make the underlying issue worse, NOT that she is imagining the problem.
We talked some more, he encouraged L and told her he was confident this would all resolve, and we wrapped up.
When we got home we had a bottle of Propranolol and a bottle of Zoloft waiting for us, and a decision to make.
To be continued...
http://fycatd1.blogspot.com/2015/03/meds-meds-meds.html
21 February 2015
"when is that headache going to go away?"
Yeah, that's the question we have too... although this one was asked a bit less softly by a teacher who, whether he intended to or not, made L feel a bit like a malingerer and a lot like a burden.
And no, she didn't not finish her rough draft of her paper because she "didn't feel like it" when she got home from school, but thanks for asking.
I understand that what Lexi is dealing with is difficult for people to grasp. Perhaps some people think she should just be able to suck it up and push through.
So let me try and put it in terms everyone can understand:
Try living without using your brain.
If you hurt your ankle, you can use crutches. You can stay off of it. You can use a wheel chair. You can still get around without using that ankle. It might be awkward, but it's doable.
Try reading without using your eyes or brain.
If you hurt your shoulder, you can use your other arm and put that arm in a sling. It might be awkward because it might be your dominant arm, but you can still function.
Try memorizing information without using your eyes or brain.
Now, tear a hamstring. Rest it for a few days. Is it better yet? Why aren't you out running on it? Why aren't you pushing through it? When is that hamstring going to feel better?!
I've realized that, maybe thanks to our sound bite, story-of-the-minute filled world, many people have no staying power. They are all energized and involved initially, but as the buzz wears off and the drudge settles in, they lose patience and interest and move on to the next "cause" or energizing topic. If someone has a situation that can't be resolved in a few days or, if you're lucky, weeks, people move on. Well, everyone except the person living the issue.
On many levels I can understand. Time passes for you and you've moved on, so it is hard to understand that, for some people, time doesn't move on so easily. For anyone dealing with a chronic illness, or even a chronic divorce (lol), or any sort of "not easily resolved" situation, the pain, and pressure, and stress, and worry doesn't wane. And until you are in that situation, you can never really understand how it feels.
I don't expect people to "get it" and I am not overly angry at that teacher for his gruff and insensitive comments to L yesterday. This is hard and exhausting for the people closest to L (so, yeah, try BEING L...) so I know outsiders are going to have a harder time understanding that, for us, time has stood still for now while we try to deal with day-to-day concerns while struggling to keep a positive, long term outlook. I do get a little frustrated because ill-timed comments make OUR lives more difficult when it comes to keeping L's chin up, but... yeah.
I am, however, red-rage angry at one individual, who appears to have bookended his 3 years of lawsuits by completely checking out during L's two biggest challenges of her life. And in 784 short days, maybe I will tell you, and him, all about that.
On we go.
And no, she didn't not finish her rough draft of her paper because she "didn't feel like it" when she got home from school, but thanks for asking.
I understand that what Lexi is dealing with is difficult for people to grasp. Perhaps some people think she should just be able to suck it up and push through.
So let me try and put it in terms everyone can understand:
Try living without using your brain.
If you hurt your ankle, you can use crutches. You can stay off of it. You can use a wheel chair. You can still get around without using that ankle. It might be awkward, but it's doable.
Try reading without using your eyes or brain.
If you hurt your shoulder, you can use your other arm and put that arm in a sling. It might be awkward because it might be your dominant arm, but you can still function.
Try memorizing information without using your eyes or brain.
Now, tear a hamstring. Rest it for a few days. Is it better yet? Why aren't you out running on it? Why aren't you pushing through it? When is that hamstring going to feel better?!
I've realized that, maybe thanks to our sound bite, story-of-the-minute filled world, many people have no staying power. They are all energized and involved initially, but as the buzz wears off and the drudge settles in, they lose patience and interest and move on to the next "cause" or energizing topic. If someone has a situation that can't be resolved in a few days or, if you're lucky, weeks, people move on. Well, everyone except the person living the issue.
On many levels I can understand. Time passes for you and you've moved on, so it is hard to understand that, for some people, time doesn't move on so easily. For anyone dealing with a chronic illness, or even a chronic divorce (lol), or any sort of "not easily resolved" situation, the pain, and pressure, and stress, and worry doesn't wane. And until you are in that situation, you can never really understand how it feels.
I don't expect people to "get it" and I am not overly angry at that teacher for his gruff and insensitive comments to L yesterday. This is hard and exhausting for the people closest to L (so, yeah, try BEING L...) so I know outsiders are going to have a harder time understanding that, for us, time has stood still for now while we try to deal with day-to-day concerns while struggling to keep a positive, long term outlook. I do get a little frustrated because ill-timed comments make OUR lives more difficult when it comes to keeping L's chin up, but... yeah.
I am, however, red-rage angry at one individual, who appears to have bookended his 3 years of lawsuits by completely checking out during L's two biggest challenges of her life. And in 784 short days, maybe I will tell you, and him, all about that.
On we go.
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