“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?

 

 

 

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 !

Mandy Meltdowns

My sweet miniature schnauzer Mandy died seven weeks ago yesterday, on December 27th, 2012.  She was my sole companion for all of the years on disability, and absolute joy for the 11.75 years I had her with me.  Most of my human friends are in Texas, and I’ve been pretty much isolated since going on disability in April 2004. But Mandy was always here. We were with each other pretty much 24/7.  The bond was different than with other dogs I’ve had (though I loved them intensely, as well).  She knew my patterns and understood what I told her with an almost creepy accuracy.  My dad commented about that often.  He could tell her to do something, and she stared at him… if I said something, she knew what I wanted her to do and did it.  I miss her little quirks SO much.

The last few days have been really hard for some reason.  I’ve been sobbing when I think about how she just went limp on my lap after a few minutes of altered breathing and periodic looks of confusion. She knew that something wasn’t right. She stopped in her tracks after peeing on her pee pads (this was after she whimpered and had some type of ‘spell’ that was similar to other episodes during her nine months with congestive heart failure).  She actually had the ‘presence of mind’ to go to her pee pads after an episode that was to end her life in the next 15 minutes.  That ‘look’ made me feel that she was confused about what was happening, and so I picked up that sweet dog, and got her situated on her comforter, with a pee pad underneath, and got her onto my lap as I leaned back in my recliner. She had some ‘leakage’ issues when she’d have those spells. I knew that if she was dying, she’d have no control- even though she’d had that brief moment of clarity to run to her pee pads.   She knew something wasn’t right, but she also knew that I was holding her, and wasn’t leaving her to be confused on her own.

That last ‘episode’ was different from others. She’d whimpered and cried when she fainted before, and while that sound was horrific to listen to, she’d snap out of it and become alert fairly quickly. This was different. She woke up, but never seemed to become ‘clear’.  So, I knew that this was going to be the end- whether she died naturally in my arms, or if it went into some prolonged situation that could only be dealt with humanely at the vet’s office. Regardless, I knew I was watching my dog’s final moments.  This was my sole companion.  She was with me every single day during some really lousy stuff, and there was no judgement (about the disability issues) and only love and companionship (during the chemo for leukemia).  My best friend was dying in my arms.

When she had that ‘agonal’ breathing (deep, but very slow, and associated with the dying process), I saw the color of her tongue change.  It became pale.  She was no longer looking at me, but I talked to her and thanked her for being the amazing friend that she had been.  I told her how much I loved her.  But I also told her that it was OK to go.  She’d been through enough.  That’s what I used to do with human patients when I was working as a nurse, and while I’m sure Mandy didn’t understand those words, I had to say them.  I had to let her go.

The previous two weeks had been long and hard, and indicative that things were changing, but she’d been alert, and interested in what was going on.  Even that last morning, she was very eager to get Swedish meatballs for breakfast (she’d become very picky during that last 2 weeks).  But at the very end, I knew I had to say goodbye…to the single being that was with me every single day for nearly 12 years, and the only being that was with me after I ended  up home all day every day on disability.  I have regular phone contact with my dad, but my dog was always by my side.  All other contacts with humans at that point were either medical appointments, pharmacy and grocery clerks once a month, the vet, visits with my dad every couple of weeks or so,   and  package delivery people.  There was also the brief contact with family on Christmas Eve.  That was literally my only contact with people in person…. but Mandy was always there.

When she went limp on my lap, I knew she was gone.  No more struggling. No need to take her to the vet, wondering if she knew what was happening.  And feeling like I was ‘killing’ her (even though I believe in euthanasia for the sake of the dog).  No more of the agonal (or difficult) breathing. No more wondering when enough was enough. No more of the up and down roller coaster of watching her have hard periods of time when she seemed to be going downhill very quickly, but then have her bounce back, and being alert and curious the whole time.

She went naturally. She died in my arms. She knew I was with her.  She didn’t have to endure the stress of a car ride to the vet (it had become difficult for her because the excitement of being in the car made her breathing more labored).  And she would get SO cold, from the marked weight loss of that final few weeks.

 I wanted more time with her.  It was 2:45p.m. when she took her last breath, and the crematory closed at 4:00… I’d called them around 3:00 p.m., and they were waiting. Dad was on his way to drive me over there.  But I just wanted to hold her for a while longer.  She was my only friend that I had contact with other than online.  She was my life.  And she was gone… I just wanted a few more minutes.  Handing her over to the pet crematory staff (who were VERY compassionate and handled her very gently) was horrendous.  Shifting her from my arms to his was agonizing.  She was obviously lifeless, and yet it felt like I was giving part of my life away to death.

I can’t get these last minutes out of my head. I do still remember her quirky, funny times, but losing her hurts like salt in an open wound, in my heart. I knew the end result of canine heart failure, and I knew those last two weeks were winding down to the end… but it also felt like part of me went with her.  Having such little contact with other people (because of the disability and physical limitations) made my relationship with Mandy so different.  And she was special (as I know all pet owners feel about their babies 😉 ). Her understanding of what I told her was eerie and made her like having ‘someone’ here.  Before becoming disabled, my other dogs were amazing parts of my life- and I loved them deeply…yet I had contact with people at school and/or work during their lives.  Maybe I became too dependent on Mandy.  I don’t know.  I just know that this time was different.

I’m going to get another schnauzer; I’ve got a breeder in mind, and am awaiting news that their mama schnauzer is pregnant.  It’s really hard to wait, but I really like the breeder and photo of one of their past puppies.  In the meantime, I’m getting things ready for having a puppy again.  And, I go through ‘Mandy Meltdowns’ – more so the last few days.  Each day, something reminds me of what is missing.  Then I replay those last minutes, then weeks, in my head- and dissolve into tears.  I’ve lost two other schnauzers over the period of time from when I was a kid, through my late 30s… and this is different.  Yes, I missed those dogs a lot, but things got better over time; I’ve never forgotten them or their individual personalities (one was nuts, the other smart and social 🙂 ).  It seems like I’m stuck, even though I’m looking forward to the new puppy.

I just miss my sweet buddy.  She made my life so much better.

Mandy at 11 years old, 2012

Mandy at 11 years old, 2012

Mandy at 8 weeks old- summer 2001

Mandy at 8 weeks old- summer 2001

Mandy's final resting place. She is with her 'big sisters' and will be buried with me one day.  I still can't get rid of her pillow bed.

Mandy’s final resting place. She is with her ‘big sisters’ and will be buried with me one day.
I still can’t get rid of her pillow bed.

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.

 

 

Suicide Attempt: Those Who Knew Never Asked…

…why I attempted suicide in September 1982.  I later found out that it was a big secret from  family (or close friends) who seemed like they’d be obvious to inform (as in why I’d suddenly dropped off the face of the earth and was no longer at the University of Illinois, Urbana-Champaign campus).  And, for the most part, it seemed  like nobody really gave a rats tail.  I did have an uncle who had visited me at the psych hospital the semester before, God bless him.  He wasn’t afraid to see whether or not I was drooling in a corner somewhere (I wasn’t – in fact, back in those days, I was downright intact compared to many there, and it was a private facility in the days where  you either went to a state hospital – like ‘One Flew Over the Cuckoo’s Nest’- or to a private facility that was essentially a hotel with nurses and a lot of pills; there were no ‘treatment centers’).  There was the friend of another uncle who befriended me (strange situation).  But that was the extent of asking me WHY I was there.  My parents were the most silent.  Nobody ever asked me why I’d tried to end my own life.

That seems a bit odd. Maybe it was some sort of bizarre form of ‘manners’ to not ask.  But if there’s ever a scream from a mountain top that someone needs to say something about SOMETHING, it’s a premature, unnatural attempt to die. During that time, my mom was going through radiation, post-mastectomy, and I’d been dropped off at school a week early to accommodate her radiation schedule (I was fine with being at school early- though the dorms were kind of spooky without everybody there- there were about 10 of us in a 12-story dorm).  I don’t remember dealing with my mom’s cancer at all. I’d been in such a rush to ‘look normal’ after having to leave school the semester earlier… I know I’d never have wanted to ’cause trouble’.

Looking back, I’m not sure I know all of the reasons for the overdose, and only remember the first part of it when I mechanically took sleeping pills one after another with the only conscious thought being how much I just wanted some rest.  I don’t remember any actual ‘death wish’. I  ‘just’ wanted relief from so much pressure of being back on that campus after being ‘removed’ the semester before because of deteriorating anorexia, bulimia, and depression with a suicide ‘plan’ (that was pretty dang lethal).  I was trying SO hard to ‘look OK’, and that pressure was unbelievable. SO when I started taking those sleeping pills, one after another, I was only wanting relief from the pressure. I had intended to wake up, from what I remember. When I woke up after nearly 3 days in a coma, I was confused.  I also didn’t believe that they’d found the remnants of fifty antidepressant tablets when they pumped my stomach.  I don’t remember that at all. I eventually sent for the hospital and university health center records.  I needed gaps filled in.

I also wrote to my roommate years later, who told me that I’d been out at a local bar (underage), and came back to the room drunk before dinner. She hadn’t seen me actually take the sleeping pills (I do remember her being in the room, but I was sitting at my desk, my back to her; being drunk explains the impulsivity and lack of planning for consequences of my actions- and why the drugs ‘took’ so intensely). But she said I went to sleep and didn’t get up the next morning. She said I’d mumbled something about not going to class because I was so tired. When she got back late that afternoon, I was still out of it, and she couldn’t wake me up. At all.  She got one of my floor-mates from the last semester who knew me better, and she looked at me and called the ambulance (about 24 hours after taking the pills…it’s amazing that I survived that long). I was taken to the university health clinic, who sent me on to a regular medical hospital/trauma center with a blood pressure that was nearly meeting in the middle. (Not good).

In looking at the records, my ‘coma scale’ couldn’t go any lower. I responded to nothing. Zip.  And, understandably- but frighteningly, I remember none of that. I don’t know when I took the bottle of antidepressants.  I don’t remember having my stomach pumped (and used to get so uneasy later in my nursing career when OD patients were often ‘threatened’ with having their stomachs pumped as some sort of punishment; they were seen as deliberately causing unpleasant work for the ER staff who had ‘real’ patients to take care of- those who hadn’t put themselves in that position- never mind that the person was in so much emotional pain that they felt they had no other options).  I never told anybody that I planned to overdose. I don’t think I knew I would OD.   I’d been trying to fit in and be social (not something that came easily outside of my home church group setting). I wanted to be in school.

I do remember asking the nurse in ICU what I had been wearing when I was brought in, as that would tell me what day it had been. I’d been brought in on a Wednesday.  I had been wearing a red gingham shirt and overalls- I did remember putting those on on Tuesday- brought to the ER on Wednesday.  I probably looked like a dead farmer.  I was very close to not making it.  I sent for my medical records years later, and my vital signs were very bad- as in not much difference between the top and bottom numbers of my blood pressure, a heart arrhythmia, and very slow respirations.  I was given some resuscitative drugs to maintain my heart rhythm, and fluids to maintain my blood pressure, and over a few days, I woke up.  Freaked. Out.

My first recollection is of someone moving an oxygen mask to ask me a question, so they could see me talking.  Then fade to black again.  Then, I clearly remember a nurse going towards my crotch with a syringe (no explanation that she was removing the catheter). I’d never been in a real medical hospital before. From there on, it was a bunch of blips of memory, finally getting back to a ‘slow’ normal. I remember being very confused by the Saturday cartoons.  I’d been propped up in a chair with the cartoons on (at age 18?), and it was hard to follow them. Bugs Bunny was too ‘deep’. For a while, there was concern about permanent brain damage, and the psychiatrist I went back to was surprised I wasn’t impaired.  I also remember the charcoal diarrhea… I didn’t know the ‘rules’ in ICU about not disconnecting the EKG leads without help before getting out of bed ( I didn’t want to bother anybody), so it would look like I’d flatlined when I was just in a hurry to get to the bathroom.  They didn’t like that very much. I felt the bruising on my breastbone where I’d been ‘knuckle-rubbed’ to wake me up, and the scratchy feeling in my throat where tubes had been.  And it all confused me.

While I don’t remember a lot about the overall overdose, I do know I didn’t want to leave school! I wanted to do well !  I wanted to show my friends that I was OK ! (And with that, I had some desert property in the Everglades for anybody who was on board with that idea). I didn’t want to be a failure.  I have to admit, that at 18 years old, in an ICU room in Urbana, IL, I had a serious meltdown when I was told I’d be sent back to the nut farm I’d spent February through mid-April earlier that same year.  My parents had been called (that was like ramming a dagger into my heart- how could they call them? I especially didn’t want to disappoint them… but  how could they NOT call them?  I was a huge liability at that point). Everything was falling apart.  I was hysterically crying when I saw my mom and dad show up later that day (?Sunday- no cartoons, and mom had to be at radiation on Monday) after clearing out my dorm room and selling my books back to the bookstore– for some reason, losing those books was almost like the ultimate ‘proof’ that nobody believed in me… I’d been ‘removed’ from school. Again.  For weeks, I cried about that.

My therapist from the previous and current semester had been called in (she was recovering from a blood clot in her leg, and having a semi-miserable first months of pregnancy).  She explained that there were no other choices.  I couldn’t remember the overdose- that was almost worse than planning it out.  They couldn’t ensure my safety. Forest Hospital in Des Plaines, IL had already been notified, and since I was as medically stable as I was going to get, I was being discharged from the ICU to be driven back up to the suburbs of Chicago.  I was devastated.  I was horribly ashamed.  I’d failed. Again.  I didn’t see the ‘illness’ part of what was going on. I just saw failure.

It was almost a bit of a relief to be around people who knew me, who didn’t think I was a lost cause (though the next several months- September 1982 through early January 1983 weren’t exactly smooth at the hospital… I was a train wreck, and things got worse before they got better, in the days of endless insurance days inpatient; ‘losing’ school was absolutely devastating, and stirred up a lot).  I spent a total of 7 months in the hospital over 2 admissions.  I was tested (I’m reasonably intelligent, so they said- LOL) from one end to another, and I tested them. I’d always been pathologically well-behaved (confirmed years later by my folks), and at the nut farm, I blew through some rules.  I also tried to escape (going where?) and hurdled the gardner and his wheelbarrow only to collapse on the sidewalk about 1/2 a block from the hospital, in full view of a busy road…. nice to have that on my resumé. *rolling eyes*  At any rate, I was in a place to work on whatever was the immediate problem, which was making sure I didn’t blindly go on some life-ending rampage.  I was never a ‘danger to others’… it was always ‘danger to self’.  I’d give the shirt off my back to ‘others’.   Whatever had happened in that dorm room in Urbana couldn’t happen again.

In some ways I don’t know if I’ll ever know what was going through my ethanol laced brain that Tuesday afternoon when I started eating sleeping pills.  Maybe the booze was a huge part of that horrendous time.  It does explain a lot- but there had to be enough going on to ‘set up’ what happened.  What I did.  The memory loss has always been really hard to deal with. There are days that are just ‘gone’.  No matter how hard I try to figure it out, it’s just not there.  But I always wondered why nobody asked me if I’d really wanted to die.  The answer is no.

Dysautonomia and Disability- Social Security and Medicare

According to some, I’m nothing but a leech on society.  Here in the US, needing help is seen as being nothing more than a parasitic slug that simply doesn’t want to work. There is no distinction made between those who are lazy (a minority of the people on government assistance), and those who have worked for many years, only to become physically ill and unable to work, by those who ridicule the ‘entitlement’ help out there.  It’s so disheartening to be lumped in the category of those who want handouts. I’d give anything to have my health back.

I spent 20 years working as an RN- in staff, charge, supervisory, and department head positions. Who knows, I may have put an IV in you, or wiped your butt.  I may have been the nurse who called your elderly mom’s doctor 8 times in two days to get an order for her to be seen by a specialist.  I may have spent an hour getting your preemie to drink two ounces of formula. You don’t know. To you, I’m worthless now, and just want ‘entitlements’.  You see me as someone who just wants free stuff… such a cruel and uneducated view.

Well, let me tell you about the ‘free’ stuff. I paid into Medicare during the 25 years I worked (I worked prior to and during nursing school as well as my years as a nurse). I paid into Social Security during those 25 years as well.  I’ve never been on food stamps.  To get Medicaid assistance, I had to meet requirements I didn’t qualify for until a horrendous couple of years of life-threatening blood clots in my lung, and then an aggressive form of leukemia. Those aren’t even the reasons I’m on disability (autonomic dysfunction/dysautonomia and seizures are the culprits there).

To get coverage that meets my medical condition needs, I pay around $500 per MONTH in premiums for Medicare Part B, Medicare Part D, a Medicare supplement that covers what Medicare doesn’t, and prescription co-pays for medications that don’t come in a generic form (insulin is the big one).  That’s not free.  That’s $6000/year (Obamacare or not- it’s BEEN this way for years).   So tell me how I’m living some life on the dole, and just sucking the government dry…

I’m not able to walk more than 100-150 feet without pain that is intense enough to change my plans.  Even with my walker.  To make a sandwich means I’ll hurt. Doing a load of laundry cause intense back and leg spasms.  Bringing my groceries in from the car means a LOT more pain.  I live alone. There is no help for the mundane- I simply have to get it done…or not.  I do the best I can.  And then I see so many hateful comments that don’t differentiate between those who can’t and those who won’t.  And the difference is huge.

To qualify for Social Security Disability isn’t an easy thing.  I had more than 1000 (one thousand- not a typo) pages of medical documentation, so I was approved on the first application. Some people have to appeal several times before they get approved.  People with obvious disorders have more stress by not getting the help that they need.  Do I think that there are people who abuse ‘the system’ ?  Yep.  But I don’t think they are the majority, by a long shot. People become homeless waiting for help- people don’t fake that.  And, I don’t think I’m the only one who feels hated for needing help.  I have a disability policy from the last place I worked- before being sent out by ambulance from work roughly a dozen times during the last 2 months I worked there.  That  private policy allows me to have %66 of my last monthly salary for my total monthly income (with Social Security paying the first part, and the private disability policy paying the balance of the %66). I lost a lot of money by being disabled.  If I didn’t have that policy, I would be living in some pit, in some trashy neighborhood, hoping everyday that nobody shot my windows out.  Do I deserve that simply because my body fell apart?

I never know when my body is going to poop out on me for something as mundane as the thermostat being warmer than I can tolerate. (One former co-worker RN refused to allow me to have a small space on the pediatric floor where I worked to set the thermostat to a temperature I could handle, so I could do my charting- and she was the boss’s pet, so I was screwed… the area I wanted to cool off would not have affected her or the patients in the least….she was simply a cold-hearted bitch with no consideration for what was going on with me; I could have done a big ADA scene, but it really wasn’t worth it for working with Goldilocks… she wasn’t worth it. I’d worked enough different types of nursing to get another job, and keep trying to make it work ).  I don’t even know how stable my internal thermostat will be when I’m at home.  Not working.  I tried to make it work at another job, with fans in my office, and trying to cool off when I felt I was getting overheated, but it simply didn’t work.

The many times I was sent to the ER before, and the first few years after, ending up on disability were a nightmare. I was labelled a ‘frequent flyer’- which is about the most hated label someone can get at an ER.  I was treated like some psycho-drug seeker.  I never asked for anything.  Most of the time, I never remembered getting there via the ambulances.  I wasn’t the one who ‘sent me’ there. My employer had, and I had no say in the matter. I understand they were covering their butts when I was unconscious, because something horrible could be happening- even though most of the time, cooler air and being horizontal were the only things to help.  It sucked.  The ER nurses, and a couple of the doctors, were nasty.  Just plain cruel sometimes.  One of the nice doctors even let my regular doctor know that he’d seen some inappropriate nastiness… but nobody did anything.  I had to just go to a different ER when I knew something was wrong, so I wasn’t blown off.

Real people with real disorders need Social Security (Disability) and Medicare, even though they haven’t hit retirement age.  It’s not a choice… it’s survival.  Without those ‘entitlements’ (that I paid into from the time I was able to work at 16 years old until literally falling over at work repeatedly at age 40), I’d be homeless or dead.  I hate needing these things, since the stereotype by people who don’t know people on disability is that of some bum, mooching off of the government.  I’d love to be working as a nurse again.  I loved being a working RN.  I still keep my license current, even though I’ll never be well enough to use it… but I still want to BE a nurse- not  ‘been’ a nurse.  I worked for that license.  And I loved what I did.

I may be on government assistance, but it’s not free.  It changed my income drastically, and allows me nothing ‘extra’.  I’m doing the best I can, and would encourage everyone to get disability insurance where they work. You never know when something will happen to you.  Nobody plans on becoming disabled.

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.  🙂

Dementia Wins By A Landslide !

I worked in various nursing homes during the years I worked as an RN, starting in 1985.  I worked as a ‘floor’ nurse, charge nurse, supervisor, and administrative (desk) nurse.  Nursing homes really are quite delightful places to work, and while nursing home nurses are often looked down upon by hospital nurses (I’ve done that kind of nursing too), the skill set required is extensive.  They have to have a bit of knowledge about all medical specialties (except obstetrics, though one gentleman did scream that he was giving birth to a calf in an emergent situation…my guess is that most people in a 3-4 block area knew of his distress; his doc felt that Haldol was a good ‘post-partum’ drug… I don’t like Haldol for the elderly; it was designed for schizophrenics- but it did quiet him down).  There are the medical issues that put people in nursing homes to begin with, and then there are those folks with dementia who can be so totally heartbreaking to watch…or a source of some humor. If we didn’t chuckle, we’d weep.  The following are from some decades ago… some of the rules were a bit ‘different’ back then, though nobody ever did anything to make the situation worse.

One woman I remember was very distinguished in her outward appearance. She was always ‘put together’ in how she dressed and in her appropriate greetings of people she met in the halls, but had no clue about hygiene or changing her clothes regularly.  Usually the certified nursing assistants (CNAs) could get almost every resident into the shower without too much hassle, but this lady was persistent in her refusal.  Nursing home residents have the right to be sloppy…when they are coherent enough to know the risk/benefit of their decisions.  When a green cloud follows them, and people fall like dominoes in their wake, something has to be done.  That’s when the administrative nurses have to jump in and figure something out.

The first thing to do was notify the family and get their permission to bathe Mrs. Cloud, even if she refused. They were the legal guardians since she couldn’t make decisions, so that wasn’t hard- they were thankful we were looking out for her (they were also out of town, so couldn’t be ‘hands-on’). The next thing to do was to figure out a plan.  The assistant director of nurses (ADON) and I were the ones who somehow got blessed with this task assignment, and thought we had a pretty good idea of how to get the job done. We got Mrs. Cloud into her private room, and carried on some generic, though tangential conversations as we got her overcoat off, and then talked about getting her clothes washed (that was usually less threatening than actually talking about showers up front).  OY.  We got the coat. We were doing pretty well with the dress, but getting down to her slip, and undies, we noticed that she had about 4 pairs of caked-on pantyhose. Each of those pantyhose required getting Mrs. Cloud back on her bed, ‘scootching’ the hose down, and then removing them…. x 4. Between each ‘scootch’, she’d bolt up and try to run off, so we’d have to get her seated again, then lying back on the bed so we could continue ‘scootching’.   The ADON and I were sweating by the time that was over.  The slip, bra, and undies were a piece of cake after the pantyhose circus.

So, we get Mrs. Cloud into her shower- after all, if we’re going to clean her clothes, why not get a nice warm shower (sounded like a good line)… she wasn’t happy, but went for it. We had the towels and washcloths ready. But…. oops. I forgot the body wash.  The  poor ADON was left wrangling Mrs. Cloud in the shower as I sped out of the room to find body wash.  I found what we needed, and we finished the shower from hell with no casualties.  A few minutes later, I saw Mrs. Cloud in the hallway, all fresh and sans cloud-o-funk, and she greeted me as if she’d never seen me before- very polite with a superficial smile. She remembered nothing. Crickets.

I also worked ‘the floor’ at night for a while.  One night, another confused little lady was wandering in a sort of frenzy, and was visibly tired. She had a sleeping pill ordered, so I offered her one. She wouldn’t take it.  I opened up the capsule, and mixed it with a tablespoon of orange juice in a one ounce plastic ‘shot glass’ medicine cup. I offered her a little nightcap, and she was so happy to take it.  I had poured some plain orange juice to get rid of any funky taste in her mouth, and she looked at me- dead serious- and said “Oh, Honey- I can only have one”.  She traipsed off to bed and finally got some sleep.

Another night, I was doing my routine work on the 11-7 shift, and one of the CNAs comes flying up the hallway off  one of the ‘pods’ (a grouping of rooms), calling my name as if she’d just witnessed Jack the Ripper field dressing a dozen deer in the back room.   I immediately went racing down to meet her, and follow her to the room in ‘distress’.  I stopped cold when I saw the elderly gentleman (also confused as all get out) sitting completely naked, bolt upright in his bed, grinning from ear to ear with his sheets and blankets all over the place. He was ‘splashing’ the gel from his gel mattress (as much as someone can splash something with the consistency of applesauce).  He had managed to puncture the mattress (used to protect skin), and had that gunk all over the place. It was hysterical.  I didn’t want to laugh at him, but it was hard to maintain anybody’s dignity at that moment. He was having a ball !  We got him cleaned up, and my only comment to the CNA was the need to differentiate between something that is life-threatening and something that is an inconvenience, but essentially harmless.  We didn’t need blood curdling screams in the middle of the night for a little  gunk on the floor (well, OK, it was a lot of gunk).

We also had a  hoarder.  The facility towels and washcloths, junk- didn’t matter. And she was possessive.  Anybody who went to clear out the stuff for laundry to rewash had to have someone else ‘stand lookout’, or the poor ‘lone’ retriever would be yelled at for a good 3-5 mintues, until the hoarder forgot why she was mad. One afternoon, one of the activity aides found a family of mice (mama and babies….LOTS of babies) living in a leftover popcorn bag (from movie and popcorn day), and a cake in a plastic bakery container that was so old that nobody could figure out the original flavor and/or color.

One of my favorite little ladies was superficially appropriate, but 2-3 minutes into a conversation there was no doubt that some bulbs were dimming. She was generally cheerful, and had a buddy she hung out with. She also was not fond of showers or combing her hair (think Einstein plugged in to a household outlet), but would let me check her skin weekly (per required protocols everyone got weekly skin checks- head to toe). The CNAs and I got into a routine of doing the skin checks in the shower room, and since I needed to see ALL of her skin, she’d agree for the CNAs to ‘hold’ her clothing…funny how the shower would get turned on, and she’d get nice and clean- she was always very agreeable once she felt the warm water. One day before getting showered, she walked past one of the mirrors, and saw herself. She literally gasped loudly and stepped back from her own reflection… she looked at me and asked about a hairbrush.  At least she still knew it was her own reflection- some lost that.

Nursing homes get bad reputations, but there are so many nice ones. I had the chance to work at two that I really liked, each for about 2.5 years.  The residents become like extended family, and some of their families also became part of the daily routine.  I’ve worked with CNAs who have been at the same facility for over 30 years…when offered promotions, they refused, not wanting to leave ‘their’ people. ❤  I’m incredibly thankful for the coworkers and residents I met when I was working at those facilities. 🙂

ROFL at Dementia…or Die Crying

My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later.  Seems nuking a brain doesn’t always go without issues.  I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable.  Mostly, I heard things over the phone; we talked often.

I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”.  She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able  for much longer. It was heartbreaking. I’d been an RN for many years at that point.  I knew what was coming.  It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that.  I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally.  SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy.  She loved her ‘granddogger’.  She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”.  That was the cue for showtime. Mom loved that. And it got her out of answering my questions.  The dog was ‘safe’.

Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia !  She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able.  But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff).  SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table.  If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.

She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her.  Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy).  He and I, with our stable feet, would order the sit-down stuff.  But, mom would be happy.  He did all he could to make every day something that was as pleasant, and pleasing, as possible.  Her last years were one long, huge gift from him.  There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again.  He didn’t let her just ‘sit’.

Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along.  He called me one day in a moderate panic.  “I don’t know what I’m going to do with your mother”.  Uh oh. She was “MY mother”…. that couldn’t be good.  I asked him what was going on.  Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling.  Anything.  Stuff started showing up on the doorstep that was baffling him.  When he asked her, somehow he got an answer that involved some “nice person on the phone”.  Oy.  I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them.  Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.

And don’t call her during a movie.  If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.”   Click.  Dial tone.  Manners?  Zippo.  It would be a movie she’d seen about a bazillion times, but it was all semi-new to her.  She especially liked “The Cutting Edge” skating movie.  I used to skate, and she took me to lessons.  The town they lived in was a big winter sports area, and skating had always been part of the local culture.  She used to sew costumes for local skaters when I was little.  She made my little skating skirts when I was four years old.

Thanksgiving often occurred repeatedly in June or July.  Instead of trying to force her memory into reality, Dad went looking for pumpkin pie.  It might take  3-4 stores, but he’d get it, and make her happy.  She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.

One trip to some 5-star resort in the Phoenix area got a bit awkward.  After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom.  What now? The head  guy then congratulated dad on his anniversary (this was in February; their anniversary was in August).  They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left.  He called me and asked me what he should have done; he didn’t want to embarrass mom.  I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.

When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered.  Huh?  We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation.  (Swedes, ya know!). And ‘again’ meant she’d done this before.   He put her on the phone.  She was making NO sense.  He got back on the phone and said she was also taking her clothes off.  MY MOM?  Stripping for the heck of it?  Something was wrong.  I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER.  I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked.  So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication.  The ‘religious’ outbursts stopped.

The dementia progressed, and every Christmas I’d see the latest level of decline.  She could still talk, but her memory was shot.  She transposed past familiar places into the city we would be passing through.  “Where is the Talcott building?”.  Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.

I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job.  He wanted to be the one taking care of her.  I didn’t want him to be alone in that.  One of the last things I remember about her  was him calling me to come and “look at your mother”.  When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up.  She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose.  I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”.  I assured her it was indeed on backwards.  She fixed it. Sort of.

They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South).  I had no idea what was going to transpire towards the end of that three month trip.  That’s for another post.  But I will always remember that dealing with dementia is a very difficult process.  Without some humor, it would be soul consuming.

I Miss Nursing, Really, I DO !!

When I was still working as a registered nurse, I don’t know how many times I heard, or how many times I said, “I wish I could retire NOW”.  I graduated in 1985 from an ADN program, and very soon after getting my license (we had to wait for snail mail back then) moved away from home to begin my career in a state/city 1200 miles from home.  I was so excited!

At first, I was the typical newbie. I was idealistic and knew just enough to not kill someone on purpose. That’s all nursing school teaches. It takes experience to make someone ‘good’, and that takes time and enough brain cells rubbing together to ignite a spark now and then.  Those first few years, I loved all of my patients, and everything they did was something to learn from.  The poop and puke, not so much, but I had a good gag reflex, and could smile through anything.  I didn’t even mind being elbow deep in someone’s butt sore if that’s what needed doing. And I was a supervisor’s dream- not married, no kids, and phone always turned on with no answering machine.  Yep. A huge target from the get-go; I’d pick up extra shifts, even at the last minute if I was home and answered the phone.

Then I grew up. Many things became decidedly less amusing.  The call-light jockey topped the list. When I found out that the spiel in nursing school about the call light meaning I didn’t ‘meet my patient’s needs well enough’ was a bunch of hooey, I learned to hate that thing. Some people are just so scared, or so regressed into the self-centric view of the world when they’re sick, that they need some sort of contact, a LOT.  I never minded the legitimate things patients needed, or even wanted.  But there was always some nitwit who had the audacity to complain about the brand of orange juice the hospital served.  Really?  And I can do WHAT exactly, at 2:00 a.m., about that particular life-threatening issue?  Maybe run out and grab a few nice juice oranges, and get to fresh squeezing them for ya? Eh?

Most patient families were very nice, and appreciative. They knew the real reason they were there- to support someone in getting well.  And then there were the invaders.  These are the families that send out messages to all known living relatives within a single day’s flight away that there’s free coffee in Junior’s room, and the nurses have nothing else to do but bring refills.  Though they do complain about the lack of service when there’s a Code Blue in the next bed. Go figure. Lack of pulse? Lack of coffee?  Tough call.  I’ll get back on that one.  But spell my name right if you’re going to take it to the supervisor, got it?  Thanks a bunch! 

 Doctors were another part of the equation. Most were great to work with, and knew if I was calling at 2:47 a.m. that it wasn’t to keep me awake;  something wasn’t good, and it couldn’t wait for 3 hours when he/she might start drifting in to do rounds.  I couldn’t just leave a note on the chart. One or two didn’t return my calls at all. That would make me so mad. Easy enough to fix that one- call the doctor he/she had ordered a consult from, and let them know that I knew  they weren’t the primary doc, but since he/she wasn’t returning my calls, did they want to do something about the guy having seizures who had never seized before? No? Well OK, just thought I’d ask.  That usually got the doc I really wanted to discuss the matter with to call back (after a brief call from their ‘real’ colleague)  apologizing for the phone upstairs not working right.  Uh huh.  Blame the phone. It worked when the other doctor called…

There was the one neurosurgeon who had a vast reputation as both a superior physician and world class asswipe.  One of his patients had the hiccups as a side effect of one of the IV meds we had to give them.  And every last doc but him would order a bit of a sedative to get rid of them; they’d go on for hours if nothing was done, and it was cruel and unnecessary.  But I had to call and report the hiccups anyway (even knowing the patient wouldn’t get anything to help) since  it was the patient who was miserable.  The asswipe doc told me there was nothing to do for hiccups but put a paper bag on someone’s head. SO, I wrote the telephone order, IN THE CHART, “Paper bag to head as needed for hiccups”, and signed/dated it.  He had to cosign that order. He’d given it.  He was still a jerk after that, but at least he’d address his patients’ needs a bit better.  This is when we all still used pen and paper charts.

This was about the time I learned to clean up diarrhea from one end of the bed to another, and then go on dinner break and eat chili. No problem.  In a pinch, I’d use a little kidney-shaped puke pan to warm up my Lean Cuisine Chicken Chow Mein…kinda looked like it belonged in there, to be honest. Made the docs nuts to see me in the back room with a fork in a puke pan.  But then they got to know me, and they were glad that’s all I’d dreamed up.  🙂

One of my  horror docs was a real genius who thought if he didn’t know about something that meant nobody would call and bug him about it. *rolling eyes*  Picture this:  a very sweet, but cash strapped guy who was diabetic, and could either get his diabetic meds OR the test strips to check his blood sugar. He wasn’t non-compliant for fun. He chose to get the medicine.  He ends up in the ER with some nutso blood sugar in the 600’s, and the ER gives enough insulin to get it to the mid-400’s (should be about 70-100 for the normal person- and I’d taken care of many diabetics who ended up permanently vegetative for ultra high or low blood sugars; nothing to joke around about. This guy wasn’t in that range, but I wanted to keep him there). The guy is awake, and with the program, so stable enough for the floor. OK, fine. The dude gets to the floor and I’m checking orders. Nothing for blood sugar checks after getting IV insulin, and still not in a normal (or tolerable) range. Lab isn’t due for several hours to check the regular blood work.  And I’m supposed to sit on this guy not knowing if he’s tanking, or has bounced high again after the insulin’s duration maxed out?  I don’t think so!  SO I call Dr. Genius, and ask about blood sugars since I’d checked one on admission to the floor, and it was still rocking in the 400’s (he was a bit irked that I’d checked it). There was no sliding scale insulin (the dose depends on the blood sugar, taken right before giving it), no orders to check the blood sugar (which would be standard), and the guy was still too high.  The MD I would never subject a corpse to responds “If I don’t know about it, I don’t have to fix it”.  *crickets*  I got nothing for that one (aside from an immediate call to my supervisor to let her know).

People really need to know what nurses have to deal with on the phone with some doctors. It’s nuts. Then they’re supposed to be diplomatic to not make the doc ‘look bad’.  I learned that his image is not my problem. If a doc wouldn’t give an order to deal with something, I’d let the patient know. No problem.  Fortunately, the vast majority of doctors I worked with knew that it was a team effort, and I was the part of the team that meant THEY didn’t have to wipe butts, serve coffee, have their arm halfway to Mars inside someone’s butt sore, get spit on, duck flying objects, referee family fights about Grandma being resuscitated until she turned inside out, not be able to pee for 8 hours easy, and sometimes 10-12, and on and on. Most doctors knew that the nurses had their backs.  I was up all night, it didn’t make any difference to me if I had to call someone, but the good ones left me orders for a lot of the ‘what if’ situations, so they knew that if I was on the phone, something wasn’t OK.  I didn’t send him/her to med school, and it wasn’t my fault he/she was on call!

But I miss those nights (and days).  They were my life.  Once a nurse, always a nurse.