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 !

Tis The Season…..

….to have all sorts of things churned up.  I don’t really get ”depressed’ over the holiday season, but more a vague sense of being overwhelmed since there are a lot of ‘anniversaries’ around this time.  This year added a new one with the death of my amazing, crazy companion- my miniature schnauzer Mandy, who died on December 27, 2012.

I’m still crying pretty much every day when I think about her, and especially about that last day.  I’m very thankful that that ‘end’ part was pretty fast.  And she was in my arms.  At first, she whimpered enough to alarm me, and from that point until she was actually gone, no more than 15 minutes went by.  After she  peed, and then froze in her tracks, she seemed confused, and not sure what to do, so I just held her and told her how wonderful she’d been.  Her breathing slowly stopped as I held her on my lap.  The ‘new normal’ of not hearing her come running when I mess with the dishwasher or clothes dryer (she had a thing for appliances), of her not leaving the room when I sneeze (or even said the word ‘sneeze’), or escorting me to the door when I got my keys to get the mail.  I didn’t have to say anything; she just knew.  I miss her more than words really can describe.  She was my only companion here in this city, for the past 10 years.  I talk to my dad every day; I saw my dog 24/7- especially since being on disability since April 2004.

Then there is the whole issue of being disabled.  It is somewhat worse in the winter months since everybody has the heat on. I don’t tolerate heat- to the point I shaved my head again (well, I had a professional do it; I wanted to avoid slicing my ears off).  With my ‘normal’ hair (mine is really, really thick), I can’t tolerate the heat it retains. Think dead animal on my scalp.  I also have to see a surgeon this next week about some (more) cysts on my scalp that are painful.  They need to go, so the poor doc has to be able to see my head.  The other issues with disability include being in more pain when it’s cold outside, and my joints just not liking getting in and out of the car.  Sounds wimpy.  Maybe it is.  All I know is that I have to manage it the best I can- so whatever I can get delivered to my door (Schwann’s frozen foods, Walmart for laundry and paper goods, Amazon for miscellaneous stuff, etc), I do.   It’s still very painful just grocery shopping for the dairy/fresh items, but it definitely helps to get stuff delivered when possible.  I’m thankful that those things are available.

Early January is rough for anniversaries.  January 7, 1978 my figure skating coach’s six kids were murdered by her then husband.  I was 14 years old, and it rocked me to the core. I can’t imagine how she has done.  I think about her often, and have always prayed that somehow she’s managed to have a life after that.  January 10, 1987, I was raped and ‘tortured’ (word the newspaper used- don’t want to sound overly dramatic on my own) for 6 hours when the uncle of a baby I took care of regularly lied his way into my apartment… he did things to me I’d never heard of, being very naive…and a virgin.  I’ve never let anybody get close to me since then.  I’d always thought I’d have a family of my own.  That day changed a lot- but I survived.  And I’m thankful for that.

In 1982, the semester that started in late January was a bad one.  I was in the midst of some serious eating disorder stuff, and the depression I only get when I’m starving and purging.  I ended up getting sent to a psych hospital (no eating disorder ‘treatment centers’ back then) for several months.  That was a bad year. I ended up attempting suicide the next semester when I returned to the university.  I was in a coma, and then shipped back to the psych hospital for many more months, once I woke up and was medically cleared.  Things weren’t done in a week to 10 days back then.  I spent about 8 months altogether at Forest Hospital (Des Plaines, IL) in 1982.  They were good to me; I did do better, but the eating disorders were on-again/off-again for decades.

This is the first winter since early 2010 (when I was diagnosed with acute promyelocytic leukemia) that I haven’t been on chemotherapy or waiting for the built up amounts of toxins to leave my body.  I’m still dealing with the weight gain and changes in my blood sugars and insulin doses, as chemo messed that all up.  The diabetes is getting better faster (great endocrinologist with a Joslin Diabetes Center affiliate here in town). I wasn’t on steroids long enough for that to be an issue- it’s ‘just’ the arsenic, tretinoin (ATRA), methotrexate, and M6Mercaptopurine.  They rearranged my chromosomes (literally…. they ‘re-translocated’ the arms of 15 and 17). I guess it will take some time to get my body back to ‘normal’.  I hate the weight.  I’ve had a long history of eating disorders, so can’t just do some crash diet and hope for the best- it could easily trigger a relapse that I just can’t afford.  But I’m going to turn 50 in late 2013; I don’t want to  look like this when I turn 50.  I didn’t want to look like this at all… but it was chemo or die.

And yet, I have a lot to be thankful for. I’m alive- that’s the big one; people with APL sometimes aren’t diagnosed until autopsy (and I know of 2 people just a few months ago who only had one and two days from the time they were told the diagnosis and the time they died; one was 11 years old).  I’ve survived being raped, and other stuff. And, with my health, I am glad to just have a day when I can get the basics done around here.  I’d like to be around people more, and am hoping to get to that Bible Study I’d mentioned in another post; last week (the first meeting of this topic- Ephesians) I wasn’t feeling well- that doesn’t mix well with indoor heat, even with my ice vest.  A childhood friend who I’ve reconnected with on FB came over one Saturday, and helped me with some generalized clutter (result of not being able to unpack after the last time I’d packed to move BACK to Texas), and is coming again- that has been a huge help.  I want to get this place puppy-proofed for the new puppy I hope to get this spring.  That helps, too.  I can’t imagine not having that hope for a new little companion to fill the dog-shaped hole in my heart.

2013 isn’t starting badly… just ‘complicated’ by past and present stuff mixing together.   There is still more good than bad.  I still have a lot of interests, and while I can’t physically do a lot, I do find things to keep me happy and make me laugh, especially online.  Blogging has been a great way to blow off steam, and some days that makes  a big difference.  🙂

Hold On To Hope, Or Face Possibilities

I’m waiting, along with many others, for news about a dear woman who went into cardiac arrest last week, and is in a coma as a result.  The day they warmed her back up from the induced hypothermia (used to minimize oxygen demands on the brain while healing from CPR), her reflexes were present. The next day, she was following commands to squeeze her husband’s hand, and raise her elbow off of the bed.  That sounded good.  Daily reports were coming in, and while nothing else major was happening, there was a hopeful tone to the reports. Then Sunday, there was no word on her condition. Monday, there was information that she was struggling, and last night, the neurologist had done a test and met with the family early this morning.  When the time is right, information will be shared about what that was about.  As an RN, I can’t think of a lot of ‘good’ since there had been little  positive news for a few days.  I remember working on a neuro floor, and when the docs met with the families, there were major, and permanent decisions to be made. Occasionally, there would be some other treatment option, but not usually.

As I’ve been mulling all of this over for the past week, I’ve had so many emotions. Anybody who was a camper or on staff at Timber-lee Christian Center in East Troy, WI would have been directly or indirectly impacted by this woman. That’s tens of thousands of kids and staff members over the decades she has worked there.  Her talent for developing fun programs to get through entire summers, each one different, is indescribable.  She also has a great sense of humor, and is one of those people who just makes people feel good. Her piano playing ability is remarkable, and even more so, since her left arm is weak- but nobody would ever know that from what she can get a piano to do.  She has been an example of what Christian woman can aspire to. There isn’t an ounce of phoniness in her. She’s the real deal.

As an 8 year old, I first met her. She was in charge of the programming for that first year as a camper. Her talents brought stories from the Bible, and how to live as a Christian to life and made them applicable. I remembered her every year I was there as a camper (7 summers), and then when I was on summer staff, she was someone familiar when I was meeting MANY new people.  I wasn’t always the easiest to have around, but she was always kind and compassionate.

This last July, I got to sit down with her and her husband at a reunion at the camp. I hadn’t been back there for decades, and while it had always been my ‘safe haven’, I hadn’t seen anybody from there since the mid-80s. I’m so glad I had the chance to talk with her, and also to have reconnected on FaceBook several months earlier. She is someone who exudes life.  And now she’s in a coma, and is struggling.  That’s not her.  Oh, she’s had struggles- but she made them work for good.

And yet, I believe in a God who is omniscient.  He knows everything- and His will is perfect for His plan.  Not my plan, or her plan- but His plan.  I don’t know what that is, or why this all has happened.  Physiologically, I understand why her heart stopped and she needed CPR.  That isn’t hard to comprehend. But what is hard to understand is how her being in a coma, and so critically ill, is helpful to God’s plan.  I have to have faith.  I know that one day, I’ll be able to ask God directly, and know His reasoning. I do believe that.  And I have to have faith in the meantime. Sometimes that faith uses a lot of kleenex.  Sometimes that faith can’t see through the tears.  But it’s still faith.  It doesn’t waver, but it also rests inside a very real person with very real feelings.

So, now the battle is this (at least for me- and I don’t believe I’m alone in this)… do I hold out for hope and God performing a miracle? Or do I get myself ready to face the real possibility that she will end her work here on earth, and join those who have gone before her in Heaven?  I have to rely on my nursing knowledge to look at where she is- and ‘she’ isn’t lying in a bed on life support. That’s the logical angle.  That isn’t how she lives. She is a very vibrant and amazing woman. I believe God can use anybody in any state to speak to others, and yet being in a bed isn’t how she has lived.  When I saw her in July of this year- just 2 1/2 months ago- she was racing around the camp in a golf cart, tending to the visitors on the grounds. Smiling. Serving, encouraging, and active.

I can’t imagine what her husband is going through today after the meeting with the doctor.  He is also a ‘lifer’ on staff at Timber-lee.  He forges iron into custom ironworks and horseshoes. Yes, there are still blacksmiths!  Now, he’s faced with an incomprehensible set of circumstances and potential outcomes to sort through. But he seeks God’s will as well.  He seeks the glory of God, regardless of the loss or changes he may also face.

In the end, those of us who believe the doctrines and Biblical principles that are an integral part of Timber-lee know that we will all see each other again, no matter what happens here in this earthly life. We have that promise and confidence in what Jesus did on the cross. That makes no sense to someone who choses not to believe in Christianity as described in the Bible- and God gives everyone the free will to decide that. He doesn’t force eternity- or Himself- down anybody’s throat. For me, it’s a comfort -though I still feel the loss of people I care about in a very human way; those concepts are not mutually exclusive.  Christianity really isn’t about either/or… it’s about more and more.  I’ll get more time with my friend. I’ll get eternity with her. That doesn’t mean that I wouldn’t miss her until then.

I don’t know what will happen. I don’t know the private matters being discussed. I do know that the woman I know is vibrant, and unstoppable. Yet, now she’s suspended in time, in a very passive state. That’s not her.  I will still pray for healing. I will still pray for God’s will to be done (which might mean He takes her). But no matter what, I will never forget her impact decades ago, or even now as she triggers deeper thought about God, and why things happen the way they do… and in the end, she has once again strengthened my faith.

And those of us ‘watching’ can celebrate her life, no matter what.

Ending Up On Disability… Part One

This is a hard one.  I’d been fighting ending up on disability for eight years.  I’d had neurological problems for decades.  Finally, it all ended up being too much, and that hurt a lot.  I’d been a working RN for 19 years, and that was who I was and what I knew.  I lived nursing.  I loved working.  I still keep my license simply because I never want to say I was a nurse…I still AM a nurse.

I’d had temporal lobe epilepsy since I was in junior high school, though it wasn’t diagnosed until I got my first nursing job and had my own health insurance.  I’d fallen a couple of times on my head, and had significant concussions.  At the times of the falls, I’d been checked out by a doctor or nurse, and they thought I’d been bonked rather hard, but in those days, concussions weren’t really given much attention.  Since I didn’t have any vomiting or vision changes, nobody really cared- though some people I knew who saw the aftermath knew I’d fallen hard.  As a result,  I spent a fair amount of junior and senior high school with headaches that were blown off (though I did see a neurologist my freshman year of high school).  There were no glaringly positive test results, so I was told to keep quiet about them- I was fine.  I wasn’t fine.

Once I was officially diagnosed with seizures in 1986, I was started on medications, and did pretty well.  My work attendance wasn’t affected by them, and when I did have seizures, I got past the post-ictal period fairly easily (the period of time after a seizure when folks are likely to have headaches, and feel kinda ratty).  I was 22 years old when I was diagnosed, and still had the power of youth behind me.  That helped.

As time went on, I had more concussions.  I don’t know how that eventually affected the diagnosis of dysautonomia, and probably will never know.  I also had some significant relapses into starving and purging- and I’m not sure how that damage to other parts of my body may indicate a possible cause of the autonomic dysfunction.  At any rate, in 1996, I started passing out.  I’d moved into a house with a co-worker to share expenses. It was a win-win for both of us, and since we worked opposite shifts, we had chunks of time in the house with the other at work.  It was almost like a part-time housemate, with the benefit of full-time cost saving. We might have  a shift here or there when we were in the house at the same time.  This house did not have central air conditioning.  In summer.  In Texas.  I didn’t know it at the time, but this was the perfect storm for autonomic dysfunction to kick in.  Heat dilates blood vessels.  In a normal person, their heart rate speeds up to keep blood moving to their brain.  In someone with dysautonomia, their heart rate doesn’t speed up, so the blood doesn’t move, and their brain shorts out.  Blood pressure also plummets. Once they hit the ground and are ‘level’ with their heart, it isn’t as much work to get blood to the brain, and they wake up.  This is exactly what was happening to me.

The first few times, I tried to minimize it, and chalked it up to stress from the recent eating disorder treatment, moving in with someone I didn’t really know, and feeling ‘monitored’ at work since returning from eating disorder treatment.  My housemate was sometimes in the house when this happened, sometimes not.  When she saw these episodes, she was sure they weren’t ‘stress’ or any type of psychosomatic episode (she’d been a nurse for several years longer than I had), and encouraged me to get it checked out. I resisted.  One night, I’d gotten up to go to the bathroom around 3:00 a.m., and hit the floor (hardwood floors).  The thud woke my housemate up (on the other end of the house where she was asleep in her room- both of us had the window air conditioners on).  I woke up looking at her feet; she’d sat down on the floor of my room, and was making sure I was waking up.  I tried to get up, and couldn’t move without things spinning.  She asked if she could finally call 911, and I told her I didn’t care.  I was too weak to move.  I’d passed out 10-12 times in a couple of weeks. That started the diagnostic process.

I had the usual 24-hour Holter (heart) monitor,  30 minute EEG (brain wave test), blood work, and appointment with a neurologist in the small town where I lived.  In telling the neurologist what was going on, she suspected something besides the history of seizures I’d had, and referred me to an electrophysiologist (cardiologist who specializes in heart rhythms) in San Antonio.  I went to see him (drove myself 60 miles there and back) and he scheduled a tilt-table test to find out what happened with my autonomic system when I was upright, and blood shifted to my legs.

I went to that tilt-table test, and totally bombed.  It took longer than most folks, but I’d started with a rather low blood pressure (80s/50s); I was used to a low blood pressure.  I began to feel things changing, and told the nurse who was monitoring me (next to a crash cart- always reassuring….NOT).  I started to fade, and they lowered the table back to horizontal.  My blood pressure had dropped to 44/16, and my heart rate dropped into the 50s (and I was still aware of what was going on; who knows what it dropped to when I actually lost consciousness).  That was it. I was diagnosed with neurocardiogenic syncope (which isn’t that uncommon at all) and the dysautonomia was verified.  I also had lumbar punctures, a 24-hour urine test (to check for pheochromocytoma), assessments for multiple sclerosis, myesthenia gravis, cardiac function tests (my heart rate was 46 during my echocardiogram), and other basic blood work. I saw a regular cardiologist, who sent me to another neurologist associated with the teaching hospital.  Dysautonomia was the final diagnosis.  I was started on the first of many medications.

It took several tries of different types of meds before my neurologist decided to try Neurontin an anticonvulsant, that has other uses.  I was nervous, as atenolol, Norpace CR, and Depakote had done nothing, and actually had side effects that were either incompatible with work, or just not doing any good. But, the Neurontin helped.  I actually started having decent days. Chronic pain was a trigger for the episodes (as is heat), so she also added a muscle relaxant.  Adding propranolol and clonazepam spread the episodes out to a few per month from a few per week.  I was encouraged.

During this time, I was working at a drug and alcohol rehab place, and was generally the only RN on campus at the time.  There had to be an RN on duty legally, and being semi-consious didn’t really count.  That was a problem.  My director of nurses (boss) recommended I go on disability, but I wanted to work !  I had more evaluations and some additional medication adjustments, and adjusting the dose of Neurontin seemed to help.  There were additional stressors at that job, and I ended up changing jobs to a nursing home, where I started working on the regular floor. Soon, the pain was unbearable, and I found a home health job.  Before I left the nursing home, the DON there asked me if I’d stay and do the Medicare assessments that would be starting in a couple of months; in the meantime, I’d do various less painful tasks.  I agreed.  I liked the facility and residents; I was just trying to avoid as many triggers as possible.

The episodes continued to happen, and that DON suggested disability.  I still wanted to work!   That particular DON ended up moving away, and the new DON and the same administrator worked with me, and allowed me to take the time I needed when the episodes hit, and then pick up where I left off with my work. Having a ‘desk job’ allowed for more flexibility, and nobody had to worry about the residents not getting care if I pooped out. My other coworkers could tell by how I was in the morning if I was going to end up tanking later on in the day  (I don’t remember what it was exactly, but they could tell).  I’m SO thankful for that DON and administrator for looking at what I could contribute, and not just at my health issues.   The episodes seemed to lessen, if I remember right.

I had decided I was going to move back to my hometown to help my dad take care of my demented mom, so thought that some more recent hospital experience would be helpful.  I resigned from that great nursing home, and went to work at a community hospital that I’d worked at before.   I had to avoid heat, and keep my fibromyalgia pain under control the best I could to avoid the autonomic dysfunction from kicking in.  I spent a year there before moving back to my hometown, and had been encouraged.   I thought that I was going to be OK to work in a hospital setting when I returned to the Midwest, and I sent out resumés, and set up interviews before I moved.  I had no idea what was in store for me.

Being A New Grad/Young Nurse

I graduated from an ADN program in May of 1985.  Back then, we took boards in June or July (I don’t remember which now), and 1500 of us sat in one room for two days, taking each of four sections of the test when we were told, how we were told, and for how long we were told. Total of 1000 questions.   If we got up to use the bathroom, we had an escort. I was the first one done on each section, so got asked a lot of questions on the condition of my bladder.  I was just done!   I think each section was allowed 3 hours, and had 250 questions.  To pass boards, one had to get a minimum of 600 correct.  None of this 75 and done business 🙂

As soon as I graduated, I went from being an agency CNA to being the only RN-educated person in the building on nights, and after 5 p.m. when I worked double shifts.  Trial by fire. There was always an RN on call, so I had back-up, but when it came to on-site hierarchy, I’d gone from the bottom (agency is always at the bottom) to the one in charge.  I had to learn a lot quickly; school is all well and good for the procedural part of nursing, but for hands on, clinicals only offered how things were supposed to work.  Time for this 21 year old to figure out what needed doing, and just get after it.  On my ‘slow’ shift, I had 30 Medicare/full-care residents in a skilled nursing facility.  It was great experience for learning trachs, suctioning, catheters, g-tubes (we used a lot of Foleys back then for feeding tubes- much easier to change out), and had to do my own percussion respiratory treatments with these little padded vibrating thingies.

We didn’t have glucose monitors back then, so had to dip urine with sticks that reacted to the amount of glucose in the urine. That was an issue, since the urine could have been in the bladder for a while, even when using needle aspiration if they had a Foley … I had to base the insulin dose (from the sliding scale) on that stale urine.  It’s what we had.

“No Not Resuscitate” orders were more of a judgement call.  If they were in a nursing home, generally we didn’t jump on them, or initiate CPR while waiting for the 911 guys.  They were old, worn out, and dead.  It was fairly simple.  Sometimes, I think that’s better. What do we bring them back for if they’re already so compromised?  For the ones who were rehabbing to go home, there was more of a chance we’d do all we could to get them to the hospital before they totally crapped out, so IF there was a chance, they were closer to the machines that would/could keep them alive until it was figured out if they had any chance at all.  If they were in the hospital, it was a bit more formal, but the input from the family was just starting to be included in what orders ended up being written.  I didn’t have to agree- just follow the orders.

My first hospital job was about 8 months after I’d graduated, and moved to a different state. I was assigned to the neurology/neurosurgery floor- a far cry from the NICU job I’d wanted.  I learned a lot there- and was mortified at some of the things that the textbooks spent a few paragraphs on (or none at all), and the devastation that can happen in someone’s brain.  Near drowning (a 4 year old) is close to the top of the list. She’d never be mobile or  aware of much.  Progressive supranuclear palsy leaves someone’s mind intact, but paralyzes even their eye muscles, so they’d need special glasses to even watch TV- sort of like periscopes. Until they die.   Herpes encephalitis is horrendous.  Jacob-Creuzfelt (or Creuzfelt-Jacob, depending on where you are) is a cruel, progressive set of symptoms that eventually shuts down everything.  I was getting a full frontal about mortality.  Yet, I learned so much.  I’ve always enjoyed learning more about neuro after that first hospital job, and went on to work coma-stimulation in a head injury treatment center. That’s all they did- head injuries, and all ages.  Long term care and skilled nursing rehab were also extensions of the neuro experience I had.

I didn’t start out where I’d dreamed I’d work when I was going to nursing school.  I went to school to work pediatrics. Well, let me tell ya… peds isn’t all it’s cracked up to be.  I eventually got a full-time pediatric job, and floated to NICU and PICU now and then.  I’d taken care of kids on the floors I’d worked on in regular hospitals, and in head injury rehab.  But to get non-stop kids, with many, many horrible abuse stories, or knowing that whatever kid was on the news at 5 p.m. would be one of my patients at  7 p.m. got to be a major grind.  That and the reduction in hours based on census was tough; I’d tried to reach the nurse manager of an adult unit to make up hours, but never got a return call (Yankees !!).  Where I’d worked in the South, people were glad to have someone show up who wanted hours.  At any rate, between pediatrics being totally different (I hadn’t anticipated SO many abuse cases), the hours being chopped, and my health starting to be a major issue, I needed to leave.  I thought I’d found my dream job when I got that call that I’d been offered the job.  In the end, though I am thankful for the experience, I didn’t like it.  I really didn’t like NICU. I learned a lot about where the  chronic pediatric patients started, but those miniature babies were not fun to work with, unless I got stuck with the ‘feed-and-grows’. All they had to do was gain weight- otherwise they were pretty stable. They weren’t bad.  I saw some babies that were totally unbelievable.  No thanks.

For the newbies out there, don’t just focus on what you think you want.  Take what you can get and make the best of it. There is an overwhelming possibility that it will make you a better candidate for any job where experience of some sort is required.  Serve your time, pay the bills, and work for the goal you think you want. But also don’t be surprised when what you want ends up being very different when you are working with a full patient load on your own. Speculation and assumptions don’t end up being very realistic… ❤

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.