After my severe traumatic brain injury, I'm trying to do the same thing. Brain injuries are so broad and so complex and dangerously invisible. I would guess this is the one unifying thread between us.
This is a solid A-level piece. Good job on both the writing and content.
Even for someone who understands the symptoms conceptually, it's a completely different matter to actually experience what it's like to be unable to speak the name of a person that you see constantly, or to experience real pain from light, or to be around people and then be utterly exhausted afterwards. It took time for my family and friends to grasp the extent of my injury, especially since it didn't occur in any dramatic or obviously horrible way.
If you are like me, you'll have moments in which you feel completely frustrated and hopeless. Be patient and merciful with yourself. Last year I wondered if I'd ever be able to have a job that required serious mental thought -- but this year I've successfully switched careers to become a full time programmer.
I apologize if this is unsolicited advice, but I guess I'm saying what I wish I would have known when I first got my concussion. And for others who read this: if you get a concussion, see and listen to your doctor -- and if your doctor doesn't take you seriously, find someone who does (especially if you have a clinic nearby that specializes in concussion / brain injury). I can't know for sure, but I think my life over the past two years would have been a lot different had I simply _rested_ in the period afterwards, instead of staying up late studying.
"only". All brain injuries are incredibly frustrating.
Adding on the advice, if you have others close around you, please listen to them and take their advice even if it's painful. This was positive for me and I'm glad I did it... but man it was painful. I felt powerless and helpless and couldn't grasp the full details of the situation. When everyone around you is saying the same thing, they're saying it for a good reason.
The largest lesson I've learned is that there's nothing fundamentally wrong with someone who has a brain injury. They manage their deficits like any sane person would. Yes, their deficits will show through but that doesn't speak to who they are. That's their injury showing itself and they're doing their best to control it.
http://www.mayoclinic.org/diseases-conditions/patent-foramen...
Generally, a patent foramen ovale doesn't cause complications. But, some studies have found the disorder is more common in individuals with certain conditions, such as unexplained stroke and migraine with aura. In most cases, there are other reasons for these conditions, and it's just a coincidence the person also has a patent foramen ovale...The possible link between patent foramen ovale and stroke or migraine is controversial and research studies are ongoing.
I'm 42 and have had migraines with aura (mostly blindness) since I was 15. My father is 72, my oldest sister is 51 and my youngest sister is 45 and they have all had migraine with aura since a young age with no strokes reported yet.
But make sure you'll NEVER take vasoconstrictors during the aura... Migraines with aura have two phases :
- first vasoconstriction, which cause the aura. Should not last more than 30-60 minutes. Take NO anti-migraine vasoconstrictor at this point.
- next comes vasodilatation which causes the pain. That's when vasoconstrictors can be used.
Find my comment bellow to learn more.
Interestingly, I have literally never taken prescription migraine medication. I don't have severe ones often enough to warrant needing it. The only thing I take - and I take it at the first sign of aura - is two Excedrin. The active ingredients in Excedrin (aspirin, tylenol, caffeine) are identical to the active ingredients in Excedrin Migraine so I generally take either. It seems to lessen the severity and duration of the headache.
As a neurologist once told me - there is no medication you can take that will reduce or eliminate an aura. So to your advice that it is dangerous to do so, apparently it's not effective either. So there is no upside and apparently plenty of downside to taking vasoconstrictors during aura.
Before that, I was usually taking 1000mg of aspirin too.
My advice if your migraines occur in high stress times (mine did): learn auto-hypnosis or find anything to lower that stress level...
There are still gaps in memory. My friends, since this essay was published, have told me how they visited in the weeks and months following my stroke, and I am floored by how I don't recall their visits, whatsoever. Like, nada. But I know I felt their love, so there is that.
Again--thank you all for the amazing response to my essay. I am overwhelmed in the best way. We writers don't get a lot of kudos, so when the love does come around, it matters very very much. I know it holds me through the darkness and keeps me going. So, thank you for keeping me going!
Are you in the US? If so, how much did the ordeal cost?
I'm unsure how much it would have cost (uninsured) had it been a more straightforward path toward treatment. However, I left many details out of the story. Doctors were unsure if the stroke was simply caused by a PFO; they thought she may have had a more serious heart defect. Thus, she was airlifted to a better hospital for a more thorough diagnosis and later ended up having robotically-assisted heart surgery (i.e., not the simple, cheaper PFO closure procedure described in this article).
Another thing: her father was very persistent with the insurance companies throughout this entire ordeal. Had he not paid attention to the way things were being billed (i.e., between primary and secondary insurance), some costs may have been pushed onto her family.
How does one pay attention to this in a time of crisis? Is there a good guide to navigating it somewhere?
Last summer I woke up with a monster headache and suddenly stopped being able to put words to thoughts. Tried calling a taxi, couldn't say where I wanted to go, so he called 911. On the way to the hospital in the ambulance I was just praying I was making the right decisions. The paramedics couldn't understand me and that frustrated them. They asked me what hospital, being an intern and totally new to the city I wouldn't know what to tell them even if I could. I was worried they'd treat me like I was on some kind of drug.
Turns out I had contracted a meningitis. The ambulance ride was $1000.
Until my family members and I individually ended up switching to insurance with nice low flat rates for services, I used to negotiate everything from office visits to ER bills. Before service if you can (especially for elective/outpatient type things), otherwise they really like cash in full. They tend to prefer working outside of insurance too, since it means more money for them even if they're halving your bill.
I'm sure there are services, and occasionally you'll find more tips on places like reddit (/r/frugal comes to mind). I have no immediate suggestions for how to do this in a time of crisis - it mostly depends on someone that knows you well giving enough of a shit, and when they'll try to bill you for services. :(
Why this is a thing is beyond me, but while it's the case...
IMHO negotiation is one of the problems causing high health care costs. Prices are crazy high by default, but insurance companies are able to negotiate lower prices from providers. This means the uninsured are billed higher by default. It turns out that individuals can negotiate lower prices too - sometimes. I advocate that a given service provider should be forced to charge the same price for the same service to all patients. This might result in competition and lower prices, but in the mean time it should lower costs for the uninsured.
I know of these largely through news coverage, and cannot speak to how effective they are (or what the costs are).
The stories I've heard, though, of the absolute complete and total nightmare that is the US healthcare scam, are heartbreaking.
I'm looking for online references but cannot find any at the moment, maybe others here have more information.
Both my parents have suffered strokes. My father had to go to a step down unit which requires Long Term Care Insurance, something that I'm willing to bet most people aren't familiar with. Even that, due to changing regulations, your LTCI that you purchased decades ago most likely no longer covers today's prices. Unfortunately you just can't prepare for everything.
I understand that my coverage is not all that common, although most providers do an 80/20 split. So for a procedure costing $100k (an ambulance ride and a few nights in the hospital would easily run this high) you'd have to pay $20k out of pocket.
Actually, it's the opposite. For the vast majority of insurance plans, there's an annual limit to your copay.
To be honest, if there weren't that limit there would be no purpose to insurance at all.
This is how many people are financially ruined by long-term chronic illnesses. For some less common diseases, medications can easily cost >$10,000 per month – which might not be covered by your health insurance for various reasons or only partially covered. Read the fine print.
It goes up each year (adjusted for inflation), but as an individual, your maximum out of pocket (includes everything: deductible, co-pays, co-insurance, etc) is ~$6,750.
My girlfriend had three strokes, in succession, two years ago (when she was 22). The night before these strokes occurred, she had a transient ischemic attack (TIA). She began speaking gibberish to her friends. She texted me later that night explaining what happened. Her friends had laughed about it because they thought she was just acting like a goofball. I had no idea these were signs of a TIA, but I told her that if it happened again she needed to go to the doctor immediately.
The next day, the right side of her body went numb. This time, she was around people who noticed something was wrong, and she was immediately rushed to the emergency room. By the next day, I had flown a thousand miles (from the location of my new job) to be with her. She couldn't remember many words. She couldn't read a clock. She did not know the answer to 3 + 0.
It turned out that, similar to the author of this article, clots had traveled through the hole in her heart and up to her brain. Luckily, she recovered fully and was back to her old self within about a month. She had surgery to fix the PFO a couple months later. The neurologist told her that nine times out of ten, the clot travels a different path, and the victim is left dead or braindead. I am so lucky. Writing about this has me in big tears.
I am going to stop writing and go hug her now.