The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full time hours slowly. My body was broken.  There was nothing to do to fix it.  I entered a world I didn’t really  understand- that of being useless and having no obvious purpose. My life since the age of 21 had been about being an RN (I graduated from nursing school in May 1985).  I had worked so many overtime hours and holidays because I enjoyed working.  And then it was gone.

I’m not sure when the medical problems ‘officially’ started, but I know when they got bad.  About 5 months after moving back to the midwest from Texas, and being subjected to indoor heat, the symptoms of my dysautonomia became severe enough to cause me to start having heart rate and blood pressure episodes that made working impossible at times. Then, over the next 10-11 months, it got to the point  of being totally unable to work.  I’d pass out if I got overheated, and that didn’t have to be all that warm- most people found themselves comfortable when I was turning beet red and feeling like I was going to faint.  Then there were the seizures.  Later, it was discovered that they are more likely to start at the beginning of sleep cycles…but that could be at the beginning of blood sugar fatigue, as well as the deep sleep I’d end up in after one of the dysautonomia episodes. It was a mess to sort out.  My boss and co-workers told me what they’d seen, which helped the doctors at the time.

My employer had started sending me to the emergency room by ambulance when I was found unconscious or seen seizing or collapsing. I was a liability.  It got to be a routine occurrence.  I was sent out more than the elderly residents at the nursing home where I worked (like a dozen times in the last 2 months I was there).  I remember none of the ambulance trips, but I do remember a lot of abusive ER nurses and docs when I would ‘come to’, who thought I was a low-life ‘frequent flyer’. They never stopped to realize that I hadn’t sent myself to the ER- I’d been sent.  ER personnel like to fix things. I couldn’t be fixed, so they took it out on me with name calling and general ‘disgust’ when they interacted with me. There was a rare ‘nice’ doctor or nurse, but I began to dread waking up in the ER.  It got worse before it got better (I found a different ER).

Those initial months and then years of not working were really difficult. In addition to the neurological disorders, I was having drug interactions that dropped my blood pressure low enough to cause small strokes.  It wasn’t uncommon to have a blood pressure in the 40-50/20-30 range.  I was usually still conscious but definitely feeling very unwell.  It was scary.  I eventually figured out a way to put a thin feeding tube in my own nose to put Gatorade through, in order to increase my blood pressure with fluid volume.  It beat going to the ER.  There were also the times when the dysautonomia kicked in and my pulse and blood pressure would go nuts on their own.  I was so frustrated that I couldn’t just ‘make myself’ do things that used to be so normal.  Like work.  Or go out in public, where the thermostats were out of my control. Now, I’m pretty much homebound, aside from monthly trips to the grocery store or MD appointments. I have as much as possible delivered.  It’s just too painful and risky to do much away from home.

It took many years to work through the shock of being unable to work.  I kept thinking I just had to ‘make’ myself well enough.  But I was having trouble doing basic things around home.  My world shrunk to that of my apartment and the monthly trip to the grocery store, or doctors’ appointments.  At the time, I had nobody to socialize with; I had no friends here.  I also didn’t have online access to most people I’d known in Texas, and none with people here.  I had my dog- and she was so important. I also had regular contact with my dad. But nothing with anybody who understood being a nurse, or being disabled.

Things are getting progressively worse when it comes to ‘normal’ activities. I just took the trash to the dumpster (about 12-15 yards away), and am now in considerable pain.  Pain is a trigger for the dysautonomia (along with heat), so I need to get more comfortable to prevent my blood pressure from crashing.  It’s very frustrating to feel like such a ‘wimp’  with normal activities.  Making lunch is also painful.  I have ‘grab and go’ foods as much as possible.   When I have ‘good’ days, I’ll make tuna salad- and then hurt.  I keep trying to do things, and it’s harder and harder.  I don’t know what sort of future I’ll have.  I am trying to find ways just to  make things work here, so I don’t end up needing assisted living anytime soon.  I want to be independent. It’s hard to accept help.  I don’t want to be a ‘whiner’ or not do as much as I can… but when I do, I always end up in a lot of pain, and often pre-syncopal.  I turned the air conditioner on about a week ago, when the night temps were in the 20s, but daytime temps were over 40.  It’s a matter of just being able to survive being at home.

I think about my old life a lot.  I miss working as a nurse. I keep my license active so I don’t have to say I ‘was’ a nurse.  I still am a nurse- unable to work as one, but I’m still a ‘real’ nurse.  Many things have changed in the nine years I’ve been disabled. But there are core nursing things that I still remember. I remember some of the patients  I took care of, and many of the other nurses and personnel I worked with. Those are good memories.  I’m glad I have them.

To those who think it can never happen to them…. you never know what life is going to hand you, or what challenges may come  your way.  Get disability insurance whenever you can.  It can make the difference between living in a decent place, or barely making it at all.  Take time to enjoy things, and don’t work ALL the time.  Jump on all opportunities to experience all you can.  Don’t create regrets.  Do make time to nurture friendships that will last.  Don’t let horrible experiences create limitations that don’t have to be there.  Live as much as you can !

To Seize, or Not To Seize…That is the Question.

I went to a routine neurology appointment today.  One of the reasons I’m on disability is seizures that aren’t adequately controlled by medications.  At my last place of employment, I was shipped out by ambulance about 10-12 times over the final six weeks I worked there because I’d either had a seizure and fell over, or the other disorder (dysautonomia) had rendered me useless.  I tried going back many months later, after another medication was added, and it didn’t work well enough.  I was considered useless as a registered nurse. That hurt. I still keep my license active, and do my required CEUs (education units) to keep my license…I worked for it, I worked with it, and it’s still mine.

Anyway, my neurologist asked about trying some other medications to see if the seizures could be stopped any better. The only problem is that I’d already tried every one she suggested, except for the one with a side effect of headaches. That is already a major quality of life issue, so she decided to not rock the boat. For now, things are as good as they get.  I know I’ve had a seizure when I wake up with the side of my tongue or inner cheek chewed up and a feeling that I’ve been trampled by elephants.

I’d had seizures from the time I was a teenager, more than likely after a couple of bad head injuries. The first bad fall was in eighth grade PE – the fall of 1976 (there have been many concussions over the years, including in the past decade) We were doing the gymnastics unit, and I was on the uneven parallel bars, getting ready to let go of the top bar, swing under the lower bar (my legs were wrapped around it), and move my legs in such a way that I let go and landed on my feet. A penny drop.  All I remember was hanging on to the top bar, and then being on my back on the mat, with some ‘kind soul’ asking me if I’d get off the mat so she could go…I was barely able to focus. That got me a trip to the nurses’ office (a place I ended up fairly often), and was watched for a while.  She called my dad, and after some discussion about me being alert and aware of my surroundings, it was decided that it wouldn’t kill me to finish the day at school.  I survived. I went into shock later that night at a girls church youth group meeting. The leader of that group still remembers that night 36 years later.

The second bad fall was in the spring of 1977… still eighth grade, but that spring. I’d fallen during figure skating practice before an ice show. There is still some vague memory of hearing a crack (and the ice was fine), and then three of the ice patrol guys who keep everyone skating in the right direction standing over me.  No memory of falling or actual impact. They hauled me off to the back room of the office, where my coach stayed with me. I refused to give her or the other ice rink staff my grandparents’ phone number. I was staying with them since my parents were vacationing in Brazil.  I didn’t want to worry grandma. SO, as best they could they watched me, and called for any doctors who were at the rink to come back and check me out; one did.  They also kept an eye on me during that weekend of many shows.  I’d be whisked off the ice after my group skated, and bundled up in my coach’s long fur coat.  When my parents returned from Brazil, the rink people called them to let them know; I don’t remember if I brought it up or not.  I tended to avoid discussing anything that didn’t have a ‘positive’ tone to it when it came to talking to my mom.  Being sick wasn’t tolerated well.

I don’t know how long it was after that when the seizures started, but by the middle of my freshmen year in high school, I was having some odd ‘episodes’ and bad headaches (can be the end result of seizures).  Many people thought I was just being difficult or dramatic, but I was scared, confused, and very misunderstood.  Mom and dad did the right things by taking me to a neurologist for a CT scan (the ultimate diagnostic test of the times) and EEG.  Those came out OK, and nobody told my parents OR me that many people with normal EEGs have documented seizures. The focus (origin) of the seizures is just too deep in the brain for the superficial electrodes to pick up. Or, the brain waves are normal when they aren’t seizing.  SO I was blamed for being a pain in the butt whenever I had anything happen that nobody could explain.   I learned to shut up.  Unfortunately, these episodes happened ‘whenever’.  It didn’t matter if I was alone, with a group of my classmates or church youth group, or standing on the roof howling at the moon.  Well, OK, I never did that last one.

When I finally graduated from nursing school, and moved to Texas in late 1985, one of the first things I did when I got my own health insurance was to find someone who would hear me out, and give me some answers. If it ended up I was a nut case, at least I would have been heard.  In the end, that’s what most of us want in any unpleasant situation.  The doc I was referred to had another type of EEG done, and a CT scan  (MRIs were just a year away from being available).  He saw something in both my EEG results, and my demeanor.  I wasn’t bragging about these episodes, or wanting attention. He never saw one.  He did see several episodes of abnormalities in a 24-hour EEG that didn’t show up on the 30 minute ones. He felt quite confident, with those results, and my lack of specific knowledge about what happened during the episodes, that I have temporal lobe epilepsy.  He believed me ‘enough’ to dig a bit deeper, and listen a bit harder to find an answer.

So the beginning of trying different medications started. Over many years I was on various drugs, and  did  fairly well until the mid-90s. The dysautonomia also was an issue by then, and complicated things.  But one neurologist in Kerrville, TX (*RIP Dr. Patricia Van Reet*) found that Neurontin was a medication that could help both. It bought me 8 years that I could still work, which was more of a gift than I could imagine at the time.  She saw something that was in need of treatment, and sent me for some ‘electrophysiology’ studies (fancy EKG/cardiac assessments), which confirmed the dysautonomia, and told her how to proceed with the treatment.  I was beginning to have some serious work issues, as I’d keel over fairly easily.

Since being on disability, I’ve had regular EEGs, and periodic MRIs.  It seems the structure of my brain is OK, aside from some mild  old stroke scarring.  I was sent to a major university hospital neurology center to see a doctor who specializes in EEG readings (Gawd, I can’t imagine looking at squiggly lines all day). I had a 5-day video EEG, that had me wired up for sound and action from Monday-Friday to find out if there was a chunk of my brain that could be lopped off to stop the seizures. Seems the place were my seizures start is too close to places that would leave me even more handicapped if they were removed, so that idea was shelved. No brain surgery.  While I was relieved that nobody would be rooting around in my brain, I was bummed that there wasn’t a surgical fix; surgery generally is done to take care of something once and for all.  Not this time.  My speech and memory centers were very close, and it could also affect my right side motor functioning.  I’d be a mute hemiplegic…thanks anyway.

There were some very valuable things that I’ve learned through all of this.  First- listen to the patient. They know what they experience better than anybody else on the planet. Just because I can’t see it doesn’t mean it doesn’t exist.  Second- not all things that look dramatic are for the purposes of being dramatic.  I had no clue what was going on, other than some vague ‘something isn’t right’ feeling before I actually lost nearly all awareness of the seizure. I’d know something was wrong when I’d wake up feeling like I’d had heavy equipment driven over my muscles, and a car parked on my head.  I didn’t twitch like the TV seizures, so many people thought I was a headcase.  That hurt for a long time.  Third- hospital ERs really hate seizure patients. I had some horrendous treatment after being shipped from work, and later when on disability and following my doctor’s parameters for when to go to the ER. ERs like to fix people,  I wasn’t ‘fixable’, so I was considered a ‘wasted bed’ (actual words told to my face), and noncompliant with my treatment, when in fact I had regular appointments, and any drug levels that could be checked were always therapeutic (good). All the ER (one particularly horrible one) saw was ‘frequent flyer’.  I’m embarrassed that those nurses belong to the same profession I did.

You don’t have to know what something is for something to exist.  The person with the health issue needs to have a full work-up, and if that includes a psych consult, then so be it- but don’t blow them off because you don’t get it or see it, or understand it (I could write for days about that with the dysautonomia).  Fight for them to get an answer.  Not everyone fits into the list in the books about what symptoms ‘should’ be there.  And the books aren’t all-inclusive. Everybody is different, and to blow someone off to live a less-than optimal life is inexcusable. Be an advocate !  And let the person know you want them to get answers, whether you believe them or not.  It’s not your place to diagnose- it is your place to support the best outcome for your patients.   You never know when you could be one needing someone to stand in your corner. It sure took me by surprise.