It’s Been A Bad Few Months…

I’m so frustrated with the increase in limitations over the last few months, especially with my grandma not doing well (and wanting to see her).  I haven’t said a lot recently, but it’s not because things are better.  More things are falling apart.  My aunt called this morning to offer to come and get me to go see grandma (about 50 miles round-trip), and I can’t do it.  I hate this.  I really want to see her.  I had a cousin offer as well (and an uncle volunteered my aunt)- so several offers.  I feel SO badly for declining.  But it’s just not physically safe at this time.  😦

It kind of started with the reflux/GERD getting really bad.  I have had an endoscopy and barium swallow.  Those showed chronic gastritis and some esophageal spasms.  I still have two tests I need to get done (gastric emptying and pressure of esophageal spasms), but haven’t been able to because my spine/back and leg pain being too bad to get through the tests.  I had one test a few days ago (EMG) that showed peripheral sensory neuropathy, that is progressive.   What that means is that my limbs (mostly legs at this point) are subject to strange pain and sensations, or lack of sensation.  At some time, this will lead to not feeling my feet on the floor when walking.   That’s a safety issue.  I also drop a lot of stuff, and have more trouble opening jars, even when ‘unlocking’ the vacuum with an old fashioned bottle opener.  I’m sending for one of those gimp things for opening jars soon.

The pain in my legs has been a burning pain unlike anything I’ve ever felt.  Fortunately, it’s not constant, and mostly at night (which makes sleeping unpleasant, if not impossible). I wake up frequently to that ‘what IS that?’ until I can fully become aware that it’s the neuropathy pain.  Now, both feet are beginning to burn at night, though not every night.  It seems like it’s progressing fairly quickly.  My neurologist did the EMG (pins into legs with electricity run through them, to measure muscle and nerve responses; sounds bad- isn’t that big of a deal).  The MRI was horrifically painful, which normally isn’t the case.  I couldn’t finish the “with” contrast part, as the “without” contrast part took about 1.5 hours, and by the end of that, I was in tears.  I joke around during bone marrow biopsies- so I’m not a wimp. I was just in too much pain this time around.

Over the last several months, I’ve been having more trouble with my blood pressure and heart rate.  The first time I was really aware of my BP being low was at an oncology follow-up appointment when it was 80/50.  I’d been really tired- but I’m  disabled with autonomic dysfunction- I’m tired a lot anyway.  BUT, at that visit, my kidney  function was moderately impaired (at the levels it was at, it would have been considered Stage 3 out of 5, of chronic kidney disease).  Thankfully, with some additional fluids, I was able to get it to the vague acceptable range (normal levels are 90-100; the standard lab values only measure >60, or the specific numbers if <60).  I’d prefer to know the actual number no matter what they are.  Even 60 is stage 2.   But anyway, I dodged a bullet with that.

At that same oncology appointment, I noticed that my A1C had gone up, so got myself off to my endocrinologist to have my insulin adjusted.  With my 2016 Medicare part D drug plan, I will be able to get the “good” insulin, instead of the half-assed stuff I’ve been able to afford over the past 3 years.  Insulin is ridiculously expensive- yet until next year, Medicare has been more wiling to pay for dialysis, amputations, blindness, heart attacks, and strokes before making good, up-to-date insulin a realistic possibility.

My blood pressure meds, which paradoxically maintain my blood pressure (or are supposed to) have been adjusted three times since this summer.  I’ve noticed some orthostatic intolerance on several occasions, but once the meds were adjusted, things would get better for a while.  But it seems that no matter what the dose,  after a couple of weeks, I get symptomatic again.  When driving to my dad’s friend’s house for dinner one night, I started getting lightheaded; that is a bad situation in the car.  I got home OK, but it shook me up. I’m being referred to a cardiologist/electrophysiologist for ANOTHER work-up on this.   I’ve looked up the name of the guy I’m being referred to- and he’s a specialist in heart rhythm and orthostatic issues… perfect for what is (and has been) going on.

I need to see my pain doc, now that there are some answers as to what type of pain is going on.   All pain isn’t  equal.  What is going on is more neuropathic pain, as well as the pain from degenerating discs in my spine (neck to tail).  I’m not sure what is going to be done about that. I don’t like the spine injections.  They aren’t painful, but just don’t last all that long.  I’m not a big fan of being on “routine” pain meds, either (instead of just “as needed”), but I may have to suck it up and just take them.

So, there’s my internal med doc (primary doc), gastroenterologist, oncologist (just follow-up at this point), endocrinologist, neurologist, pain doc, and cardiologist (to come).  Seven doctors in about four months.  I loathe adding doctors to an already complicated mess, but at least until things stabilize, I just have to see them.  Fortunately, my pulmonologist (sleep apnea), plastic surgeon (scalp cysts), and dermatologist (psoriasis) get a break for now.

But the timing on any of this is horrible.  My grandma is dying (as in actively).  I want to see her, and don’t feel it’s safe to go 25 miles each way to see her.  It’s not because I don’t want to.  She was my best friend during those early years on disability when I knew nobody here (and had no access to Facebook or other online social connections and reconnections).  We’d talk about so many things and laugh about stuff in the past.  We’d also reminisce about my mom (who died in 2003).  She’s almost 101 years old, and has been the glue holding our family together.  All get-togethers and gatherings centered around her.   I have called her care-taker who tells her I called, and that I love her.   I know she knows that I do, but it’s still hard not to be able to go down and hold her hand one last time.

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Frustration and Unpredictability of Dysautonomia

I’m supposed to be over at my dad’s  friend’s home, eating tacos with them.  I’d looked forward to it since getting the invitation this morning.  I took a shower (not a simple task when temperature changes are risky) and got my extra ice vest inserts packed into the insulated bag, and the ‘full’ ice vest ready to go.   I got in the car, and headed over there.  By the time I got to the first stop sign, I could already feel things changing.  I hoped that some cool air, and ‘thigh squeezes’ would change my heart rate and blood pressure (I couldn’t measure it in the car while driving, obviously, but anybody with dysautonomia knows when it’s changing).   No such luck.

I got to her street, and since I wasn’t feeling any better, decided it was better to circle around and go home.   I’ve had a mental plan for years for what to do if I get symptomatic in the car.   The air conditioner (which is usually on anyway), talking to myself, thigh squeezes, and knowing where the side streets are in case I need to pull out of traffic are at the top of the list.  There is no scarier place to have symptoms than when I’m in the car, driving.  If I have symptoms before leaving home, obviously I don’t drive- but tonight, it hit kind of fast. Fortunately, I do have enough warning before I pass out to safely pull over, but  I feel badly for being such an unpredictable guest.

During the last few months, I’ve had a lot of stuff going on that has made the dysautonomia (POTS and some neurocardiogenic syncope- not quite to the point of syncope) labile.  I’ve had a scare with my kidneys (that turned out to be just a scare, so dodged a bullet there).  I’ve had to change the dose of my primary dysautonomia beta blocker to HALF of what it was a few months ago- my blood pressure got low enough to cause the decrease in kidney blood flow and change my lab values, which is not a good thing.  I’ve had a lot of neck and lower back pain that has required some tests that didn’t show anything new (degenerative disc disease, and some bulging discs in my neck).  I still have another  test in a couple of weeks (EMG- needles in my thighs with electricity pulsed through them; I’ve had it before- it’s no big deal; nerve damage is already known- just have to see how fast it’s changing).  My right thigh is visibly shrinking in a weird, not normal way (like maybe if I were losing weight…. then both thighs should ‘shrink’ the same).  Diabetic neuropathy is getting worse with burning leg/thigh pain, as is gastric reflux.   The reflux issue has some other tests pending as well, but the ones that have been done show esophageal spasms as well as chronic gastritis.  Toast is my friend. The diabetic nerve pain is a burning like I’ve never felt before.  I have been awakened by it, and it feels like what I’d imagine if someone put some type of accelerant on the outer part of my entire right thigh, and lit it on fire- yet when I touch it, it’s numb.   I guess it shouldn’t be a surprise that the dysautonomia is going through some “out of whackness”.   A lot of other stuff is out of whack.

I hate these fluctuations and changes in the status quo.   I get used to one way of my “normal” and how to adjust my life accordingly, and then something else happens.  The whole thing gets weird again, and it’s another ‘normal’ to get used to.  I don’t like being undependable.   I’ve always been punctual and if I said I’d be somewhere, I showed up (aside from the dysautonomia and disability stuff that ended my working career as an RN). My dad is used to my 50-50 chance of showing up.  Not everybody knows this about me, and I feel bad when I bail out.

The shower could have made things less stable.   I have horrible heat intolerance, and showers can be a problem.  I generally don’t take a shower and go somewhere in the same day- I need some time for things to get back to ‘normal’ after being exposed to the warm/hot water (I like hot showers… my blood vessels don’t).   I didn’t feel bad after getting out of the shower (a bit winded, which is ‘normal’, but nothing weird).  I allowed time to rest (about an hour), so thought that would be enough.  Guess not. 😦

Anyway, my head still feels a bit loopy when I stand up.   I just got done with a plate of food my dad’s friend sent over- which tasted really good, and had some salty stuff which probably helped.  I just feel bad that I couldn’t be over there with them, as we’ve had fun the other times we got together.

To The Lead Voter in The Parole Board, Voting About the Guy Who Raped Me

Dear Sir,

I think this is the third time I’ve sent in protests to the parole of Carl E. Chambers, who raped and sodomized me for roughly 6 hours on January 10, 1987.  It was a lovely Saturday morning in Austin, TX that quickly grew to be a matter of survival, and the ultimate nightmare.  I’ll get to what he did to  me in a minute- both during the attack and the longterm effects.   But first to Chamber’s character and history on parole.   I’m writing because I’m not sure how long I’ll be able to keep it together during the phone interview.  It might be a bit scattered.

Chamber’s first known (adult) conviction per the Parole Division Adjustment Statement I received, and how I understand it,    was in Illinois in December 1976 (for forgery)… his 5 year probation was revoked due to a burglary charge.  He got 1-3 years for that, but let out on parole.  Then, he was convicted of kidnapping, and released on parole in 1985.  He was then convicted of Aggravated Assault with a Deadly Weapon (I believe this was the screwdriver to the neck of a woman at a bus stop in Austin, TX), for which he got 3 years- but was paroled 8 months later, in 12/1986…. Thirty-nine days later, he lied to get me to pick up his infant nephew (a regular babysitting job) under the ruse of his brother-in-law being in an accident, and someone needed to watch the baby.   I loved that little guy, so I immediately went.   I was very naive, and knew nothing of his sociopathic or criminal  history, other than his sister telling me that that last charge was a situation where he’d been in the wrong place at the wrong time (he probably lied to her as well- she was only 19 years old).  I didn’t know what it all meant.  His sister (the baby’s mom) told me he’d been a problem as a juvenile, and the ‘black sheep’ of the family… he’s never coexisted normally in society.

With the last parole violation (domestic violence), he pled no contest… he seems to be unable to function in a world he’s never really been a part of since December of 1976.  At least 4 parole approvals, during which time he became exponentially more violent. He agreed to a 60 year sentence during a bizarre change of plea mid-trial during the trial for what he did to me.  He AGREED to a 60 year sentence.  I understand mandatory release, but why send this type of “human” back out into the public unless it’s absolutely required by law?  His track record is that of progressive violence.  He’s not safe in public.  He also moved to an unknown location while on intensive monitoring in the past.  As a sex offender, he was around his step grandsons (maybe he only has to avoid the demographic group he’s violated- just seemed weird) who were given scripted things to write for the last parole protest.  His wife married him while in prison for what he did to me- she is not a safe or reliable resource for not helping him leave the area he is supposed to be in, if they are still married.  Seriously- someone marrying a convicted rapist? He must have spun some tale for her…. her letter protesting his parole revocation screams of bad judgment and poor self esteem, if she thinks Chambers is suitable spouse material….

That Saturday morning in January 1987changed my life forever.  Yes, it’s been 28 years since he spent six hours continuously beating, raping, and sodomizing me with his penis, his fists, and a wine cooler bottle that had ragged tin foil around the top.  The force he used tore uterine ligaments.  The pain was so intense that all I could do was hold on to the coffee table leg, and focus my attention to the pain in my hand, so I could keep from screaming during the assault on my internal organs. He told me he’d kill me if I made noise.  I saw blood halfway between his wrists and elbows, on both of his arms, from “manipulating” my vaginal area.

About 11-12 weeks after the attack, I woke up with horrible abdominal cramping, and what I assume was a fetus dropped into the toilet.  I’d been a nurse long enough to remember what the photos of the pre-born look like from my obstetrics class.  I saw the side of the placenta that attached to my uterus- not the baby (who would have looked like a baby by that time).  I was so relieved to not have to carry his spawn… and yet it was a baby, and the only one I’d ever carry…. I still have a lot of conflicting pain about that.  How could I ever have made that child feel wanted, and even if I’d given it up for adoption,and  he/she found me later, what kind of pain would that cause the child to know that he/she was the product of a violent rape by a career criminal , and essentially unwanted?   I am not a fan of abortion- but I thought about it.   In the end, God was merciful enough to end that pregnancy.

I’d always wanted a house full of kids, and a loving husband.  It had been a dream for a long time. I was known as “the babysitter” during junior high and high school. I spent 11 years in the church nursery, for both Sunday services as well as the Wednesday dinner service.  I wanted my own babies.   I was a virgin when Chambers violated me, and nobody has touched me sexually since that day.  Check that out…. I’m a 51 year old virgin, minus the rape.   The thought of someone getting that close is repulsive to me.  I have male friends and family that I see fairly rarely that I’m able to hug, and it’s OK,. but  I never have been able to be intimate.  That dream of a family and kids was over.   I’ve missed a LOT of normal live events because of the rape.  Sometimes I feel rather defective because of that.

As I get older, I realize how much I miss having a family of my own.  I only have my dad (who is nearly 83 years old, so not sure if he’s going to be around for 20 more years, or ????), and a biological mom who is several thousand miles away.  There are some assorted, beloved cousins in other states.  When my dad is gone, I will be alone here, and can’t help but wonder what my life would be like had I not be so viciously attacked.  There are very few friends nearby, and they all have lives.  There is no other person who has really shared my life as long as my dad has (I was adopted at 10 days old).   I’d always imagined a husband and four or five kids.  But that dream died when the experience of being so violated changed my perspective and ability to trust.  And being “handled” isn’t something I can deal with.  Who would want to marry someone who freaks out at being touched in a normal type of relationship?  I couldn’t tolerate any prolonged physical closeness, or the awareness of someone else in my home- like when I was sleeping at night.

My parents and coworkers had a lot to deal with after I was attacked.  It never is just about the specific victim… the collateral damage goes on for several groups of people.  My mom was hurt deeply (she died in 2003, or I’m sure she would have sent in a letter).  My dad has read my police statement, per his request.  NO dad should have to read those things about his only “child”.   My coworkers had to deal with my inability to focus, and general “not me”.   I was asked to leave that job 2 weeks before the trial.
I still have hypervigilence.  I’m still untrusting of most people (never really know someone).  I still have vivid memories that bring me to tears.  I still remember the positions he put me in, all over the apartment, that cold winter morning.  I remember being an object.  Each time I send in parole protest letters, it starts it all over again, and yet I feel a responsibility to fight to keep him contained.  If the person who was attacked before me had done that, I wouldn’t be writing this.  My jaw is still ‘weak’ when I open and close my mouth (it literally cracks).  I still feel the scar in my mouth where my teeth went through my lower lip when he slugged me in the jaw.  I’m still triggered when I hear about something in the news, or even in a movie.  My perspective about a lot of things is different now.

These are the ‘simple’ reasons I don’t want Chambers let out.  Emotionally, it’s much more complicated.  He will hurt someone else- it’s his pattern.  I don’t wish him ill will… but I do feel a need to do what I can to protect others from him.

Thank you for your time.
Sincerely,

The Survivor/VIctim of TDCJ# 00453210
His 60 year sentence is also a life altering sentence for me.

Pain Management for the Non-addicted

Hydrocodone (Norco, Lortab, and Vicodin’s main ingredient) has been in the news a lot in the last few months.  People are dying from overdoses.  While that is very sad, it has created mayhem for those who take meds as directed.  Those who follow the rules are being ‘punished’ because of the actions of those who don’t (yes, I believe addiction is a disease, but there is a point in the beginning where using chemicals is a choice; genetics is said to load the gun, circumstance pulls the trigger, and the addict *at first* has their finger on the trigger… addiction doesn’t happen at literal gunpoint).

Hydrocodone has been moved from a schedule III to a schedule II.  That means that any refills must have a paper prescription- no getting phoned in refills.  Those with chronic pain must now go to the MD office and get the piece of paper to take to the pharmacy, then wait for the prescription to be filled, and then go back home.  That is ludicrous when someone hurts so much that leaving home for anything is painful.  My spine is collapsing, my discs are degrading, my thighs are shrinking from neuropathy, and I’ve got fibromyalgia.  I also have chronic headaches.  I’m in a lot of pain, more days than not. I don’t remember ‘pain-free’.   And now, I have to deal with the actions of people I have never met who have emotional issues that they use drugs I need to squelch.  Those people are now dictating my medical care.

Less than %6 of those who are prescribed opiates who TAKE THEM AS PRESCRIBED ever become addicted (Google it).  So, %94+ of those who need pain meds for chronic conditions are now subject to stricter rules because of those who use them for psychological reasons/pain.  I’ve had a prescription for one form of narcotic or another for almost 20 years.  I might take the meds for a few days and then take none for a couple of weeks.   I might take one pill on those days, or I might take two or three across the 24-hour period.  Depending on the type of pain I’m having, an extra gabapentin (seizure med also used in pain control) or even Excedrin will work better than the opiate.  Depending on the headache type, a triptan works much better than an opiate.  But on those days when narcotics are the only thing that will make it worth taking another breath so I can remind myself that it will ease up at some point, I shouldn’t have to pay for what an addict is doing.

Addicts are going to get their opiates (if that’s their drug of choice) no matter what.  I see this change in ‘rules’ driving more people to use herion or other illegally obtained drugs, and anticipate notable jumps in heroin deaths and overdoses over the next few years.  I already know of an entire medical group’s practice (for one entire hospital system here) that no longer allows primary care docs to prescribe pain meds because of this new change in the law (doctors already are monitored for how many prescriptions they write for narcotics, how many pills they give at a time, etc).  So the doc who knows the patient the best isn’t allowed to determine what is best for him/her.

My primary care doc  initially wasn’t comfortable in prescribing stronger  opiates when regular Vicodin (hydrocodone 5mg w/ acetaminophen 500mg) wasn’t working (after the discontinuation of Darvocet, which was effective), so I went to see a board certified pain management doctor.  Once I had a ‘system’ of what med to use when, she was then OK with prescribing, so I could have one doctor prescribing the vast majority of my prescriptions (my neurologist is the only other one), using one local pharmacy, and one mail-order pharmacy.

I have worked as a detox RN in a treatment center.  I ‘get’ that drug addiction is a disease.  I have a great deal of empathy for those who are in treatment and making positive changes in their lives.  But their inability to handle meds should not determine my medical care.  What someone else can’t control shouldn’t create issues for MY doctor when I am able to take meds as prescribed, and have for two decades (for chronic pain).  Acetaminophen (Tylenol) is the leading cause of liver failure in this country…. why isn’t that scheduled (or withdrawn from the market)?  Alcohol-related deaths can take out entire families at a time w/drunk driving- should we have licenses for buying booze?  Why are those with legitimate, documented medical disorders that cause pain made to ‘pay’ for those who don’t use the meds as directed?

My primary care doc and pain management doc (who I only see sporadically at this point) know me better than the DEA does.  My pharmacist can vouch for no hinky requests for refills.  I’ve never shown up in an ER asking for pain meds.  I don’t crave narcotics.  I don’t take larger doses, or more frequent doses than are prescribed.  I follow the rules.  And now, especially with winter approaching, I will have to go pick up a piece of paper (getting in and out of the car is painful in the summer, let alone the cold) which, until October 6,2014, was done by phone between pharmacy and the doc’s office.  I had to go every three months to be re-evaluated (which still stands), which isn’t a bad thing.  I don’t think pain meds should be thrown around as if they are insignificant… but  addiction isn’t my problem.  Pain is.  There is a huge difference.  I don’t even let myself get to the point of physical tolerance (when someone takes something as prescribed, and the body becomes used to it being there… withdrawal symptoms can happen if the med is abruptly stopped- and that is not the same as addiction).  There is a gross lack of awareness between addiction, dependence, abuse, and tolerance- and I think that applies to policy-makers as well.

No law is going to save people from themselves if they either don’t want to be saved, or don’t see that they have a problem.  They might not ‘get it’ on the first run through rehab or 12-step meetings… but those who keep at recovery will eventually get there, and be clean.

 

For those who are now in a position of not having a physician who will prescribe pain meds (whether from fear, ignorance, or restrictions from his/her employer- you may not know why they have changed their policies), here are some tips from an RN of nearly 30 years, who has taken care of addicts, chronic pain patients, and lives with chronic pain:

1.  See ONLY a board certified pain management doctor for pain control.  They often have ‘rules’ such as random drug screens, no dosage change over the phone, limits as to how many months before actually making an in-person appointment (vs. picking up the prescription from the desk), etc. Do NOT see a doc who asks how you will pay, writes a prescription, and has a line around the block…. Do. Not. Go. There.   😮

2.  Use only one pharmacy (two ONLY if you also get meds from a mail-order pharmacy for other chronic conditions).  Let your doctors know which pharmacy you use, and offer to get copies of records if they want them.  Pharmacies are bound by HIPAA (privacy laws), and might not be able to tell the doc asking what other docs have prescribed (if someone from the same practice is on call, they probably can, since they are acting on your regular doc’s behalf for you).

3.  Don’t dramatize pain.  Tell the doctor where the pain is, how bad it is, when it is better, when it is worse, what helps, and what makes it escalate.  You may have pain for the rest of your life- don’t wear out the extreme descriptions when you have 30-65 or more years to describe it.  Sometimes letting your doctor know what the pain keeps you from doing is helpful…. those pain scales are kind of useless for chronic pain.  But, if you tell your doctor that when it’s moderate, you have to postpone laundry, or if it’s moderately severe, you have to cancel appointments, that can give better information for chronic pain.  It’s way different than acute pain.

4.  Agree to get tests done to more clearly identify what is causing pain.  If you refuse to get diagnostic tests done, that can indicate that you know that nothing is going to show up.  Not all disorders show up on tests, but working with your doctor when they want more information via testing will go a long way.

5.  NEVER change doses or frequency without talking to the doctor who prescribed the pain meds (or any meds, for that matter), unless you have been given specific instructions.   There are some pain meds that have a very narrow window between effective dose and the dose that will cause you to stop breathing.

6.   Don’t ever forget the good parts of your life.  You are not defined by your pain or any other medical conditions.  You decide if you are happy or not.  You decide if you focus on nothing else.  I know that there are days (and sometimes weeks) when you really can’t focus on anything else for much of the time… but when you can, take advantage of those days and be thankful for your pets, family, friends, the ability  to still work (I’d give just about anything to still be working as an RN), your interests, etc.  Your attitude is completely in your control, even if nothing else seems to be.   😉  ❤

Triggered ER Memories…

I got a canned e-mail from my dad’s medical provider, asking for one of those Press-Ganey surveys to be filled out.   I don’t do those.   They’re a colossal waste of time, and the results are used ‘against’ nurses in ways that are demeaning of the job. They’re a popularity contest for healthcare. Nurses aren’t concierge staff… they’re there primarily to give medical care.  Not have to be subjected to some very fortunate person complaining about not getting coffee ‘sooner’, totally oblivious to the reason it was ‘late’ was that the nurse was doing CPR on someone two doors down.   Anyway, it got me all stirred up, and I wrote the following before seeing that it was a ‘no-reply’ e-mail.  Sneaky them :p

–I’m xxxxx’s DPOAH, and deal with all of his e-mail (I’m his daughter- and a disabled RN). He is pleased with his care w/Dr. Kxxx- no issues whatsoever. I go to some appointments with dad, and also have Dr. Kxxx as an oncologist- great folks in the office area, lab draw folks, and Dr. Kxxx himself. Couldn’t get much better.

As an RN (I still keep my license), I have a general loathing for Press-Ganey, since it doesn’t consider all factors in someone’s care (especially inpatient- like if someone complains about their coffee request being slow to be delivered, while the nurse is tending to someone who is either trying to die, or has coded somewhere down the hall). Totally bogus complaint in the GRAND SCHEME of things… our society is too much about “me”, and not about the entire picture.

IF there are issues, I have no problem contacting the hospital directly. It’s really none of Press-Ganey’s business in my opinion. If you can tell me why their butting in is so important, I’m teachable !

I do have some compliments regarding a couple of tests I had a week or two ago. I had a abdominal and pelvic CT w/contrast and a CXR. The nurse and techs in both departments were outstanding. Lisa and Shannon were in the CT department- both very personable, friendly, and gave great instructions. They had the perfect balance between respecting my knowledge as an RN since 1985, as well as informing me of what was going on (and what needed to happen since I’m on metformin- and getting a follow-up creatinine done 2 days later). Lynette was in x-ray, and came SO quickly to get me for the CXR- very professional as well, and also kind. They made the inconvenience of having to drag my ratty body away from home much less unpleasant. My overall experiences in the outpatient/testing departments have always been good- every last person has been pleasant and professional. I didn’t feel like they were trying to suck up, so that Press-Ganey would be happy… they were genuinely doing a nice job.

I have had my share of nightmares in the ER there…

I haven’t been to that ER in a several years- so this might be outdated (wanna be fair). My experiences there in the early to mid-2000s were horrific. I was considered a ‘frequent flyer’, though many times, someone else called 911 because I’d lost consciousness (I have dysautonomia and documented epilepsy among other things). I could give you a laundry list of abuses and negligence in that place. Maybe it’s better now- I hope so. When I got there because I had actually been awake enough to call for help, I was following my MD’s instructions for when to get help (my blood pressure would drop into the 50s systolically- and it wasn’t safe to NOT get help when just lying down wouldn’t do anything). I still was verbally demeaned- for following my doctor’s instructions.  It’s so important for those in the ER to know that just because THEY aren’t familiar with a diagnosis doesn’t mean that it’s automatically some psych disorder, and they don’t know everything about the person, just because they have some vague medical info on them.  I never asked for pain meds, never had a squadron of unruly family around (never had ANYONE around), never even asked for help to the bathroom- which was partly because the call-light was nowhere to be seen, etc. I was told I was a “wasted bed”, and that “seizure patients never follow up”; (I actually had monthly appointments with my doctor at that time because things were so unstable). It got so bad that I learned to put in my own small gauge NG tube and put in 1/2 strength Gatorade by gravity, to increase my fluids- and take my chances at home. My doc  wasn’t thrilled with that (but I know how to manage an NG safely)- yet she knew what had gone on in the ER from what another doc had told her (he was one of the few nice docs). It’s amazing what medical equipment was available on eBay back then.

On April 1, 2007, I was brought in (BP dropped again), and by the time I got there, with the jostling around, it was better, but I still didn’t feel right… I had had a few weeks of weird symptoms that weren’t quite my ‘normal’ weird. The doc on that night actually refused to examine me. He wouldn’t repeat the BP (meant pushing a button- and he didn’t even have to do that; a nurse was near the monitor). I continued to have odd symptoms after being sent home, and eventually had substernal chest pain radiating into my neck. On April 11, I called my doc’s office and was told to go to a different hospital,  and tell them about the chest pain; THEY would take care of me. Tests showed that  I had multiple chronic, sub-acute, and acute PEs in all three lobes of my right lung and R PA (pulmonary artery). I spent 17 days in the hospital getting regulated on warfarin. The chest pain was from my lung pushing into the apex of my heart. That ER doc’s personal ASSUMPTIONS  at St. Xxxx’s could have cost me my life. As it turned out, it was ‘just’ another blow to my feelings as a sub-human. I didn’t have the typical PE symptoms until the 11th (actually the night before- but I wanted to talk to my doc about what to do since going to St. Xxxx’s ER was just a set-up to be blown off and humiliated).  And the doc didn’t bother to see WHY I’d been there “too much” (his words) in the prior couple of weeks.

Being considered a psych case, I was sent home unable to walk one time- crawled into the cab, then crawled to my front door. Another time, I was put in a wheelchair van, and sent home- if I needed a wheelchair to go home, how was I supposed to manage at home. Alone. ?  One doc began to intubate me without checking to see if I was even awake (I was- I’d just regained consciousness, and saw him walk in the room- alone, no help for suctioning, no meds for a genuine intubation, no indication of what he was going to do)…. he knicked a tonsil going in, cutting it, and setting off my gag reflex- so then I was vomiting blood. A nurse came in, and he eventually pulled the laryngoscope out. He asked me if I’d OD’d (a common assumption- though no drug tests were ever positive), and I said no. He told me that’s all I had to say… he never asked me anything!  I didn’t know what he was going to do (he was behind my head- my eyes back there don’t work well). Then left the room. I was so embarrassed to have vomited- but I guess they call it a gag reflex for a reason.  That nurse was very kind as she helped me get cleaned up… she must have been new.

A nurse put a Foley in one time (I’d lost consciousness at a neighbor’s home, and she’d called 911… I’d had no presyncopal feeling -which I generally did- just awake one minute, and about 3 hours later waking up in the ER). The nurse blew up the catheter balloon up ON my internal sphincter. I said it hurt, and was trying to tell her it hurt WAY more than it should- and she turned around and walked out of the room. She just left.  Absolutely no acknowledgment of what I was saying, yet she was looking at me; she heard me, and saw me trying to move the catheter.  I managed to push it in far enough to actually be in my bladder.  It took 4 liters of fluid to get my systolic BP to hit 80…. I was sent to ICU, and just managed to avoid dopamine (which could have been a disaster for someone with dysautonomia).  I was admitted as an OD– yet NO drug screens  EVER showed any type of drugs.  Really?  Even with evidence, I was still some loathed OD patient?  My doc came to see me the next morning, and told me she’d see if she could enter a note to negate the OD diagnosis.

These are a few things that I will probably never forget… and the ER at St. Xxxx’s still scares me. I sent a few letters to the customer service person (whatever they’re called) at the time, and got the canned letter of ‘we strive for excellence in patient care’, blah, blah, blah. Nothing ever changed, because I was seen as a nut job. NO psych history, no drug abuse, no ODs, nothing psych related at all. Just judgmental nurses and docs who saw me too often for their liking. I (me, myself- no doctor) eventually figured out a medication interaction that was contributing to some of the BP issues (the dysautonomia won’t ever go away- but it helps to not have interactions messing with it). I also started going to another ER if I had stuff going on that required an ER (after the PEs, there were some other incidents of chest discomfort/SOB, as well as hematuria one time, requiring some IM vitamin K, and an overnight stay for a couple of tests and IV antibiotics for a UTI). I’m lucky I went there when I was having symptoms that were eventually diagnosed as AML- subtype M3 (APL). I was there for 6 weeks in isolation, induction chemo, and started 19 months of daily chemo of some type (except for ‘scheduled breaks’ and when I had shingles on my butt). I don’t have confidence that St. Xxxx ER docs would have bothered to check things out. And, I could have ended up like Jeannie Hayes- the WREX anchor who died 2 days after officially being diagnosed, after a brain bleed.

As an RN, I know that some patients are annoying, but that doesn’t mean that there isn’t some genuine medical issue going on as well. I did my best to not bother the ER staff. I did anything they asked of me while I was there. Most of the time, I didn’t make the call to be sent there, and when I did, it was because of my personal doc’s parameters. Nobody deserves to be treated like they’re a crazy HUMAN being, and waste of time. I think some of it is the age of many of the newer nurses, and the overall mentality that ‘work’ is a destination, not a verb. I don’t remember a single nasty tech, lab person, etc… it was always the docs and nurses…. very sad.  And even if I HAD been someone with some psychiatric issues, does that mean that subhuman care is justified?   People ask why those who do have mental health issues don’t get help… I can guess part of the reason.  The humiliation isn’t worth it. 

Anyway, I’m sure this is more than you wanted to hear. I don’t do Press-Ganey, since they don’t address issues I’ve had. They run a popularity contest, and I’m not interested in those.

Have an enjoyable week, and maybe remind the ER staff that they know nothing of the patients’ entire lives… they see a snapshot of a bad time. And regardless, they still don’t deserve to be belittled, or even physically injured because of their prejudice and assumptions.—-  (end of ‘note’)

ER staff gets very little information about a patient’s entire life- or even enough to make a true assessment (or judgement) about the person.  They see symptoms and test results, and whether or not they like the ‘diagnosis’ of patient who is before them.  It’s unprofessional and abusive to not treat someone with compassion.  If it was their family member being talked to in the same manner, they’d be outraged- yet they feel it’s OK to do it to strangers.   I realize that there are some amazing, compassionate emergency rooms out there, with incredibly kind and patient staff nurses and doctors.  I commend them.  They have to deal with whatever walks in the door- and that has to be difficult.

IF it becomes so easy to judge an entire person on a diagnosis (and be less than humane), it’s time to find a new job, or another area of medicine to work in… maybe the morgue.   😉

Former Co-Workers When I Worked Pediatrics

I was stumbling around on Facebook, and  found three of the R.N.s I worked with when I worked pediatrics, and sent ‘just saying hi’ messages.  I’m not sure they’ll see them, but I hope they do.  When I worked there, the dysautonomia had started getting much worse, and they were stuck with me some nights when I was having heart rate and blood pressure issues.   More than once, I was hauled down to the E.R.  Not good.  I was more of a liability with my inconsistent ability to stay vertical.  And I’m not sure anybody really understood what was going on.   I know I was stunned at how bad things were getting… and it scared me.  But I still thought I could work if I found something else.

Anyway, I have respect for them, and am glad I had the chance to work on a pediatric floor.  I’d taken care of kids on many other types of floors I worked  (neuro, head injury rehab, general med-surg) for years, but not a ‘real’ pediatric floor.   I greatly value the experience I got there.   I’m going to post this with a ‘public’ tag, hoping they see this if they get the messages.

When the dysautonomia first kicked in after I’d moved back from Texas, I wasn’t sure what to expect, so didn’t panic at first. I’d always been able to find some medication that helped.  I had to do a 3 week heart monitor that showed PVCs.  That was treated with medication, and it did help to some degree.  I could still feel them, but not as often.  But, I was still  able to work more than not.  I was starting to feel uneasy around the tinier babies… I would do all care and assessments without moving the baby off of the bed.  I’d ‘cradle’ them in my arms, and do everything that needed doing, but I was afraid to move them away from the safety of the cribs.

The summer months were hard on that floor because of the decreased census (kids not in school giving each other ‘bugs’). Being single, I didn’t have a spouse to help make up the difference in pay I was losing when hours were cut (I lost a month’s hours over the summer).  That was a problem.  I couldn’t work overtime when I was doing all I could to work the hours I was assigned.  Everybody got hours cut- and it was fair as far as that went, but I needed full-time work year round. The nurse manager contacted an adult med-surg manager who said she’d plug me into their schedule, but she never answered my  phone calls.  And I was getting scared.  I needed to work somewhere where  I wasn’t so anxious about the dysautonomia.  I didn’t trust my own body…but I wasn’t ready to give up working. Being a nurse has been my identity for a long time.  It was like that part of me was starting to die. But I didn’t want to give up.

I made the decision to work at a nursing home.  I’d worked in several before.  I wouldn’t have the fear of dropping a small baby/child when I’d get dizzy or feel the PVCs, and if I had to move someone, there was always a CNA around somewhere at the nursing home to do it together.  It was more team oriented- though any one of the pediatric nurses would help when asked.  I’d be pushing a medication cart around, and if needed, I could stop for a minute, bend over, and try to clear my head when the dysautonomia kicked in.   While I really was thankful for the chance to work pediatrics (the reason I went to nursing school 18 years earlier), it wasn’t a good thing in many ways anymore.   And, it was really hard to leave.  I really liked the vast majority of people I worked with.  They gave good care to the patients, which I respected.  Most of the night shift nurses were ‘older’ (not 20-somethings), and I enjoyed working with nurses closer to my age.  But I had to leave for many reasons.

I felt badly about the short notice they’d get when I was feeling the pre-syncopal symptoms.  If I was taken to the E.R. in the middle of the shift, someone (or a couple of them) would have to take care of my patients.  That wasn’t fair to them.   There were huge issues with the temperature of the break room (or any designated place I could go cool down). My heat intolerance was bad, but  at that time, I could still go into patient rooms and do what I needed to do, even if it was quite warm.  The babies’ rooms were especially warm, which they needed;  I understood that, and was  able to manage.  But it was nearly impossible to find somewhere that was cool enough for me to chart between assessments or meds (being in the rooms), see my lights going off, and do better getting through the shift- mostly because of one nurse who was considered the nurse manager’s ‘pet’.  That one nurse in particular was very nasty about the thermostat.   I didn’t care if I  was in the main area- I just NEEDED somewhere that wasn’t as hot as most of them liked it (I’ve deteriorated a lot since then, and can’t leave home without cooling vests, and my thermostat is never above 68- generally cooler, and often on when the outside temp is below 40 degrees). I leave home about once or twice a month, always with the cooling vests.   I could have pursued it with the ADA (Americans with Disabilities Act), but I’m not much into ‘forcing’ someone to do the right thing.   If they’re that nasty, I’m not interested in working with them.  There were many really great nurses to work with there, but if I couldn’t stay conscious, I was no good to them or the patients.

Since then, I worked about 8 months at the nursing home before I was essentially forced to go on disability.   I was passing out ‘hard’, and hauled off by ambulance at least 10 times in the last 2 months I was there. I don’t remember any of the ambulance trips.  By then,  I had an office job doing care plans.  I tried to go back  7 months later, but it didn’t work.  My body was crashing, and the pain from the repetitive motion and shoving those 200 pound medcarts around was triggering more autonomic stuff- whether at work or at home.  Nobody there would acknowledge I existed after I had to leave.  One went out of her way to avoid me at the grocery store.  I’d gotten sick- I wasn’t some sort of criminal !!

Since being on disability, I’ve deteriorated even more, and had some more challenges come up.  I’ve had leukemia (acute myelocytic, subtype M-3, or APL) with 19 months of near daily chemo of some sort- that blew me up like a toad (face/chin is still not right after a nasty cellulitis and ear infection during the worst of the leukemia), I lost my hair twice, and my eyebrows never did come back in right. But a local news anchor died within 2 days of diagnosis from the same thing, so I’m fortunate.  I’ve got degenerative disc disease in most of my spine, so chronic pain.  I had a knee replacement.  I had multiple pulmonary emboli, and spent a lot of time hospitalized getting that straightened out, or for complications from them or the warfarin. I had testing to see if part of my brain could be removed- come to find out I need all of it :p   Chronic pain and headaches are just daily life.   Chemo makes autonomic stuff worse; my legs are atrophying, so I am ‘working’ my thighs as much as I can to maintain the strength there.

But I’m fortunate.  I’ve had great experiences as an R.N.   I miss it daily.  I’ve been of some use to some family and friends when they’ve been going through their own medical disasters.  But, I had really hoped that I’d work on that pediatric floor for a long time.  It was my dream job when I was in nursing school.   I really enjoyed most of the people I worked with.  I respected them and the care they gave those kids.  I liked the patients (the abuse cases were hard to handle emotionally; they angered me), and learned a lot.

I’m also still able to live on my own.  There are times when I wonder how long that will last, but I’m doing what I can to make sure I can live here in my own space for as many years as possible.   I have a ‘new’ dog; she’s 18 months old now, and nuts, but a lot of company.   I got her when she was 9 weeks old.   My dad is still healthy and a big part of my life. I have two friends from when I grew up here. One has helped me a lot with straightening out my apartment after being packed 4 times to return to Texas… every time I packed, something else would go on medically; I’m no longer able to travel very far.  The TSA has issues with my cooling vests (they turn into liquid), and I can’t be ‘contained’ in something with no room to get up and move around. But,  I have adjusted how I do things (order many items online, get Schwan’s food delivered, shop in the middle of the night when it’s cooler, and there are fewer people getting huffy because I don’t move as fast as they do, etc.).   There are ways to get most things done.

SO, if any of those nurses I worked with see this, thank you for being part of the good things I remember when  I worked with you.   I may have only been there for eight months, but you left good impressions, and it was long enough to respect you.  I wish you all well.   I didn’t know how to handle what had started getting bad, and I’m SO  sorry for the inconvenience I was for you, as well as the times I sort of spooked some of the nurses I worked with when I’d hit the floor.   But mostly, thanks for the good parts 🙂

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Dysautonomia episode w/ chest blotching, severe flushing, lightheadedness, and other symptoms that come and go with various intensities.

Inexperienced/New Nurses- Give Them A Break !

That old ‘nurses eat their young’ comment from less experienced nurses gets VERY old, but there is some truth to it, depending on where someone works.  I worked in Illinois and Texas, and I would hate to have been a new nurse in Illinois hospitals; being an experienced nurse in Illinois when I returned 17 years after leaving wasn’t so bad. Being a nurse in Texas was generally positive, as they’ve had REAL nursing shortages for a long time- not just a shortage of adequately educated new graduates– for a long time.  When I moved to Texas  in 1985, employers were very thankful to have a nurse- even a new grad- because new grads had to have the basic skills done before graduating nursing school (and even being eligible to take boards)…. there were no ‘internships’ to finish schooling.  Now, hospitals have to finish educating the new nurses, and they don’t like it. They have been put in the position of paying for the ‘internships’, or running out of new nurses. It’s expensive, and finding older nurses who want to ‘babysit’ isn’t always easy; that wasn’t part of nursing school- that is part of being a nursing instructor (who may be some relative newbie who mainlined their Master’s degree to avoid working on the floor- so she has no floor experience)  I don’t blame the hospitals for resenting what they’ve been left with, but it isn’t the newbie’s fault either.  Orientation in any new job used to be two weeks maximum… if the new employee hadn’t figured out enough to be cut loose on her own in that job (with the expectation she’d have questions along the way), she was let go.  End of story.

When I graduated in May of 1985, we had to finish a checklist of skills in each class. If we didn’t pass those skills checklists in each class, we repeated the class. Period. End of discussion.  We may not be experts by a longshot, but we could get the job done without damaging someone.  Like with anything, there are always many things to learn and improve on, but we had enough learned to be safe.  We weren’t told that ‘all hospitals have IV teams’ (which isn’t true- and if you work in long term care, you are ‘IT’… there is no IV team anywhere).  You don’t know where you’re going to end up working to pay the rent and pay back those freakish student loans.  You go where the money is- and that very well may not be what you dreamed of doing.  If you have tens of thousands of dollars in student loans (instead of going for an ADN at a relatively inexpensive community college,  and getting an employer to help with further education), you work where there is work- or you never leave your parents’ basement.

I went to nursing school to work peditrics. That didn’t happen for 17 years, and I ended up finding it extremely depressing with the abuse cases, and permanently damaged preemies that got older, but never got any more  developmentally advanced than  the day they left the NICU 15 years earlier. Very few generally healthy kids ever showed up; most were absolute train wrecks. But I was glad for the experience. By the time I got a job on a pediatric floor, I’d taken care of kids on other floors that were in hospitals that didn’t have specialized peds floors.  So I’d taken care of kids; that helped me get the pediatric job- as well as having had 17 years of honing various skills that are good for any job; I just needed to work on the specific things to pediatrics- which was challenging enough to keep me interested.  I’m glad I did it, and glad I got out.  All experience is experience in something that will be useful in any other nursing job. 

So what makes an experienced nurse?  Having actively worked for over 20 years in healthcare as an RN (and a few as a student nurse/CNA), and since being disabled, having watched nurses for 8 years as they took care of me or a family member or close friend, I’d have to say that a nurse is no longer ‘new’ after about 3-5 years- but  it depends on the nurse. It takes a lot of time to integrate the information in nursing school, which generally focuses on one body system at a time, to be able to take care of a 19 year old pregnant diabetic drug addict who is in the middle of a sickle cell crisis, and is a post-op appy.  Or an actively dying AIDS patient with pneumonia, a perforated bowel, and his Port-a-Cath has clogged past the point of being ‘clot busted’, that is intense pain and has no current orders for any pain med besides an IV delivery route.  Or an elderly nursing home patient  on dialysis, a tube feeding, a trach, and has diarrhea (first thought in that situation is fecal impaction) and a UTI.  It takes time to see the WHOLE patient- not just the parts assigned to you !  You’re assigned to all of them as a nurse- new or not !

New nurses are supposed to have questions (including nurses who may have experience, but are new to a  different specialty).  The quiet new nurse is the most dangerous and the most disliked on any unit/floor. There’s always the question that she may be too dim to know what she doesn’t know, OR that she is too meek to ask. Both are recipes for wrongful death, and no other nurse is going to want to be associated with that type of nurse for anything.  They ARE the plague. Those who talk as if they’ve been nurses for years aren’t far behind. If you’re new, ASK.  If you haven’t done something very many times (like at least a dozen), it’s GOOD to just run something past someone with more experience, until the skill is something that you do without even realizing that you’re doing it automatically.  You’re not stupid for asking; you’re stupid for thinking you have it all figured out when the ink on your license is still wet.

That leaves something for the older nurses to remember. We’ve all been new.  For those of us who graduated a few decades ago, we didn’t have the horrible situation of being turned loose after an incomplete education.  We didn’t pass boards by chance of getting 75 questions that we happened to know the answers to (we had 1000 questions over 2 days in 4 groupings of 250 questions; if we got less than 600 right, we weren’t nurses; we got two tries to get it right, and after that it was back to school). We’ve been able to adjust to things as they came along (and that’s something for the newbies to remember- the older nurses know how to do things in many different ways, including the old, new, and in between). The newbies have been cut loose having to deal with medical technology AND the alive and breathing patient.  That can be overwhelming.  Older nurses have to be role models and mentors, not antagonists. Or, expect those calls on your day off when someone calls in because you’ve run all of the newbies off.  But, if you know you don’t want to be a mentor or preceptor to a newbie, tell your manager !  Don’t get paired up with someone you have no interest in helping learn the ropes 🙂

For those nurses who went into nursing for the relative job security and decent pay, leave.  Nursing needs people who are doing the job for the patients.  Yes, everyone goes to college for the purpose of getting a job.  But those who are simply in nursing for a paycheck aren’t what the profession needs. If you can’t get into someone else’s shoes and learn to appreciate what they are going through (also known as empathy) you’re not much use.  Go be an accountant or electrician. The hours are better anyway 🙂

For those nurses who will do anything to get a nursing job, consider this:  I got an ADN. Nothing else. And I worked staff, charge, supervisory, and department head jobs.  I never needed a BS.  I got to teach CNAs (which was fun!).  I had desk jobs doing assessments and care plans. But I was also willing to go where the jobs were– meaning smaller, more rural communities.  I ended up in the Texas Hill Country, and that was wonderful. I loved my different jobs- and they were glad to have an RN who was glad to have the job.  XTXRN was born in those hills…. those who have been on a specific nursing social site will know what that means 🙂

So, old school nurses, remember what it’s like to be new… newbies, remember that those who have been doing this longer than you may have been alive know a lot more than you do. Learn from them.  Lose the superiority thing.  Explain what it is you are having trouble with, and it’s much easier to help you 🙂  Never be afraid to ‘look stupid’.  The nurses that are truly stupid don’t ask questions.  They may know a fair amount, but by not asking questions they limit their potential.  And nursing as a whole.