Opiates Are Safe When Used as Prescribed…

… it’s the people who use them incorrectly AND DON’T FOLLOW THE RULES,  take more than is directed, and use them for emotional issues that get into trouble.    Those of us with chronic pain use them to do normal tasks (laundry, cook, housework, etc).  They can be a very safe and effective way to manage chronic pain when used as prescribed.  I’ve never heard of someone who takes something as prescribed who becomes an addict.  I worked drug and alcohol rehab as a detox RN- and every last one of the drug addicts used drugs inappropriately, and generally illegally- and forfeited normal life and relationships to get more of the drugs.   Those who use them as prescribed don’t do that.

https://www.webmd.com/pain-management/tc/safe-use-of-long-acting-opiates-topic-overview#1

Those who do not use opiates as prescribed are making a choice ( at least initially) to use them for non-medical issues (emotional).   They make a decision that makes them more vulnerable to addiction (not to be confused with tolerance or dependence).   Addiction involves emotional symptoms like cravings, and behavioral issues such as doing anything to get more, not maintaining relationships (personal, work, legal, etc), and in general disregards anything in their  life in order to maintain drug use, eventually violating the law to maintain/obtain  drug supply, or type of drugs used (heroin is cheaper and easier to get than many prescriptions due to changes in availability and MD’s willingness to prescribe them).

What are the differences between addiction, tolerance, and dependence?  A LOT of people become tolerant or dependent on various types of meds but aren’t necessarily addicted.   Tolerance is the body’s getting used to a dosage, and then needing more to get the same effect- but that isn’t the same as addiction.  Dependence is the body getting used to a medication in their body, and when that medication is discontinued, they need to do so gradually to avoid withdrawal symptoms- there aren’t  emotional ‘needs’ to keep getting the med, and it’s not the same as addiction.    Addiction ALWAYS includes emotional and behavioral components.

https://teens.drugabuse.gov/blog/post/tolerance-dependence-addiction-whats-difference

For those of us who live in chronic pain, all of the talk about the ‘opiate epidemic’ is terrifying.  We need the meds to have a normal life (to some degree).  There is no emotional or behavioral need for the pain killers- JUST the need to ease pain that has been verified by diagnostic testing.   For the government to tell physicians how to treat patients is bizarre.   For a personal physician to be limited in how to treat a patient he/she actually knows is cruel in many cases.  There are entire physician groups here where I live (associated with one of the local hospitals ) that are not allowed to prescribe opiates if they are general practitioners, or primary care docs.  How is that rational?   If there is a known cause for pain, why does someone have to see another doctor (specialist) to get pain relief- waiting weeks at times to get an appointment or test done?

I have a pain management doctor.   With degenerative joint disease, degenerative disc disease, carpal tunnel syndrome, TMJ, a knee that can’t be replaced because of a history of pulmonary emboli (blood clots in my lungs)- so I will NEVER surgical pain relief), fibromyalgia, renal insufficiency (so can’t take NSAIDs like ibuprofen), etc, opiates give me some relief and “enough” quality of life to live independently, and not wish I was dead.  I still have days when the opiate I take (as prescribed) isn’t enough.   I get spine and knee injections many times per year.  My pain doc has rules in order to be his patient.  He doesn’t changes doses over the phone.  No early refills.   Have to go to the office to get a paper prescription because of the type of meds he prescribes.   They do random urine tests to check for other meds. I like that he has rules- he’s not a pill mill or “Dr. Feelgood”.   He’s board certified in pain management.

Consider the population that is involved in the “opiate crisis”… they are rule breakers that have high risk consequences for high risk behaviors.  Addiction isn’t their fault, but getting treatment is their responsibility.   Restricting those who DO follow the rules is mean… and the suicide rate will increase among chronic pain patients who can’t get relief, even when they’re the ones who follow the rules.

Deal with the addicts- not “punish”  those who take pain meds as prescribed.  Those with chronic pain didn’t choose their physical conditions….addicts (in the beginning) choose to not follow the prescription instructions, and use meds for non-medical uses.   That’s not the problem of those who DO follow the instructions.

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It’s Been Almost a Year Since Dad Died…

I don’t think a day has gone by that I haven’t remembered that horrible last day, and yet the month leading up to that was kind of a trial run for what  Dad would deal with if he ended up in a nursing home… I’d never wish that on him.  There are a lot of nice nursing homes (I’ve worked in a few), and I have nothing against the nice ones at all… and can be a huge positive move when someone is mentally ready to make the decision.  But Dad had always been SO active.  Just six weeks before he died, he drove home from Florida in two days, ‘outrunning’ an ice storm.  He did all of the driving, though he had a friend with him for company . The second day, he drove from S. Georgia to home (near the IL/WI border) all in that second day. He never drove that far in one day when I was a kid, going to FL for Christmas vacations, when he felt OK.   He’d call me when he stopped for gas that second day, and ask me to look at the radar to see where the ‘ice line’ was… and he made it home by about 9 p.m.  He had been feeling bad, and wanted to get home to see his doctors (regular guy for the current stuff,  and oncologist  for routine follow ups after successful thyroid cancer treatment).   He felt bad.   He’d been in the hospital near Palm Beach for a couple of days, and it scared him.

The week before he died (when that wasn’t even on the radar), and after every other visitor had left, he asked me “what are you going to do with me?”   He’d been in rehab for about a week, after 3 weeks in the hospital.  I asked “What do you mean, what am I going to DO with you?”.   He asked about options if he couldn’t come home.   I had been making a lot of phone calls to various facilities that I knew were nice places with good reputations,  in the event dad couldn’t transfer with one assist (which he couldn’t at that time).  The one-person assist transfer was what would determine any real options.  I’d been getting quotes about hourly rates for Certified Nursing Assistants for 12-hour days; I would have stayed  during p.m. (and overnight hours)  after the CNA got him more or less tucked in for the night, and his friend would have taken the morning/day ‘shift’ so Dad was never alone with a stranger. We figured out how long we could swing that financially (it wasn’t that much extra to keep him in his own house vs. a private room in a nursing home, estimating the costs for medications, doctor visits, etc– but nursing homes are EXPENSIVE.  The daily rate only includes room and board- no meds, therapies, doctor visits, etc).  But it all depended on him being able to transfer with one assist.   At that time, he didn’t even know if he was actually standing up straight during therapy, and was totally unable to transfer without two people AND equipment (for safety).   It wasn’t looking good for going home, but I was willing to arrange things  if he got well enough to really have choices.  He totally understood the one-person transfer requirement,.  He knew  that was the only reason he was able to care for mom at home, as well as travel with her in those later dementia years, was because she was an easy transfer.  He understood.

Dad wasn’t a guy who would do well being subjected to other people’s schedules, the noise of call lights, having to wait to get something he asked for, confused patients wandering into his room, etc.    He would have been miserable in an institutional setting.  He would have missed his friends, church, and estate sales (though I’m sure his friends would have visited- still a huge emotional hurdle for someone who had been SO independent for so long).  This was a man who was always on the go.   Being stuck in a wheelchair, dependent for basic mobility/personal needs, and the noise would have been intolerable to him.  He was already having trouble hanging in there with the hospital “routine”.   He didn’t understand the process of what happens when a doctor writes an order for a new pain med (or anything else).  He hurt and didn’t see why it took so long for the doc to write the order, the unit clerk to send the order to the pharmacy, the pharmacy tech to fill it, the pharmacist to check it and call the doc if there were any issues – which meant the doc had to return the call, sending it back to the floor Dad was on, the nurse checking the medication, and then dealing with the thing that was like a medication vending machine, requiring scanning Dad’s arm band,  scanning the medication, and then marking that it had been given ( and being only one of 5-6 patients his nurse was keeping up with).  On a good day, that could take over an hour… standard hospital operations.  In a nursing home, a new prescription would likely arrive late at night with the routine pharmacy deliveries, though nursing homes are required per state regulations to keep initial doses of some of the more common meds to hold someone over until the deliveries came.   There are reasons things take so long, but that is of little help  to someone who just wants to feel better.

There was also the issue of  a private room – something Dad would panic about because of his uber sensitive hearing- misophonia- where ‘routine noises’ like snoring roommates, gum chewing, chattering visitors for the roommate, chatting in the room with his friends,  etc were actually way more than annoying to him .   They almost caused a panic reaction, and more than once his blood pressure went very high just because someone was chewing/snapping gum close enough that he could hear it.  He couldn’t help it.   He didn’t have any control over the reactions, which could be rather angry and cause physical symptoms.  So a private room in the hospital or any facility was “mandatory” to him.   He’d literally beg me to “promise I get a private room”  when he was in the ER, and I told him I’d do what I could, and then I’d beg the admitting doc to write the order for a private room, explaining the situation.   They were always accommodating, but hospitals and nursing homes MUST  save some private rooms open for infectious patients – or  like  in my case with the leukemia, minimizing exposure to ‘outside’ people  who may have had  a minor cold, or a sick kid at home.   Fortunately, he got private rooms- and I had to explain many times, to whoever I was talking to that it wasn’t a ‘snob’ thing, or that he was the sort to isolate… it was actually a painful situation to hear certain noises.

I think dad knew that he wasn’t ever  going to  come home.  In those quiet early evenings alone with him in the hospital or rehab hospital, he’d give me lists of some of his possessions that he wanted specific people to have.  We had  always had a very open relationship about ‘end of life’  decisions, other health topics, or whatever,  so I didn’t think it was that odd.  And  fear can be expressed in ‘final wishes’, even if someone is expected to recover.  It didn’t strike me as odd.   I just kept making notes.   I’m so glad I did.

Backtracking a bit, that first night in the hospital (March 3, 2016), he was terrified.  He asked me to look at his feet, and I said I’d be happy to, but wondered what I was looking for.  He asked if his feet looked like my mom’s did during her final 30 hours.  Hers had been mottled with the coloring I’d seen many, many times in people who were very close to death.   I told him that his feet looked fine, and were warm,  had good general color, had good capillary refill (how fast it takes for the color to return to normal, after  enough gentle pressure  to make the skin turn very pale), etc.  He was so terrified.  I made a promise to him that night that no matter what,  I’d be honest with him about what was going on, and if my nursing experience wasn’t enough to know the answer, I’d find out and tell him.    He told me that I helped ‘calm him’.  I wasn’t able to be up at the hospital as much as I wanted to (mobility issues, heat intolerance, needing the wheelchair, increasing pain the more consecutive days I went up there, etc), though we talked daily.  I talked to his nurses (which he wasn’t that thrilled about if they were in the room, as the “racket” of discussing his care/condition annoyed him- or, my favorite- “don’t bother them”… he never quite got comfortable with the idea of telling them he needed or wanted something, unless it was for pain- and Dad didn’t even own Tylenol… he had little frame of reference with pain,and generally waited too long to ask for something). I had phone calls from the social worker working on discharge planning, and other behind the scenes stuff- getting rid of the ancient food in his fridge (and replacing it as promised), getting stuff he wanted from home, and checking in to things as he requested.

One late afternoon, he told me he needed the urinal, so I got it for him and told him I’d be in the hall by the door so he could let me know when he was done.  He told me that all dignity he had was shot, and didn’t care if I stayed… but he was my DAD ❤  I wasn’t going to not give him privacy.  He had the sheet covering him, but still…  His only complaint was that I hadn’t let the leg part of the bed down… “Can you fix this so I’m not peeing uphill?”…. Yep, Dad,  I can do that.  🙂  He hated having   to  ask for any sort of assistance for basic daily needs.  I could tell that it was wearing down.    He felt helpless, and that just wasn’t  Dad.

ALL of these things help in a way for my grief process (I don’t mean that to sound selfish)… Dad would have been miserable in a nursing home IF he’d been able to survive any type of surgery.  He likely would have ended up with a colostomy, and whatever was going on with his spine wouldn’t have gotten better.  We never did know what the lesions pressing on his spinal cord were…. he’d had biopsies of all sorts of things, MRIs (that’s a whole other story), bloodwork,  ultrasounds, and whatnot.   It wasn’t for lack of trying that the cause of those spine lesions wasn’t found.   As much as I miss Dad, I know that being in “the home” would have broken his heart.  He would have put up a socially acceptable front, at least for a while.  He was such a great social person.

I knew something was changing the summer before when he was offered the chance to be on a private 160 foot yacht, going around Sicily, with his friend and her family (son-in-law was way up there in the top %1).  He loved to travel, but didn’t want to go.  First he said he thought he might get seasick.  He had been in the NAVY… not for long (knee issue), but seriously?  He’d also co-owned a sailboat, and loved sailing with his cousin in Milwaukee when he and his wife lived there.  Seasickness wasn’t going to fly with me.  I pressed him, and he said he was just too tired- he didn’t want to be a dud guest with keeping up with conversation (something dad had always been really good at).  That made more sense.  I got his OK to talk to his oncologist (same one I’d had for a while) so that on his next visit they could do any additional lab work at the same time they did the routine stuff.  Turned out that his thyroid meds needed tweeking.   But for him to turn down a trip?  That scared me.   In some ways, the early twinges of grief had already started when he was still very much alive and active.  His health was becoming an issue- which was very new.

On that last horrible day, it also helped that the ER docs were so amazing in how they tried everything they could to make sure that nothing was overlooked when he was admitted that last time.   They called four  specialists (urology, infections disease, surgeon, and gastroenterologist).  They pulled me out of the room, and were SO kind in helping me make the decision that was really already made by the disease process.  They made sure I knew what was going on, though when I saw the lab work and  heard that the infection from the ruptured diverticula  had gotten to his blood, and many other places... I knew.  I let them know I was an RN since 1985 (disabled, but keep my license active).  I understood the ‘head’ stuff.  My ‘heart’ was a mess… but Dad and I had talked about what he wanted, and I promised him I’d do whatever that was.  I did.  Signing the Do Not Resuscitate form was excruciating… but I’d promised him.

His docs during the hospital stay prior to rehab were also amazing, from his regular oncologist to the rotating hospitalists and specialists.  He got good care in the hospital .  One of the nurses went above and beyond when he found out Dad liked Heath bars… he’d seen some of the mini ones in a bowl at the nurses station, and snagged some for dad.
I’ve mentioned this before, but it’s something that goes through my head a lot (along with the initial delirium, when the mentally intact man I’d talked to less than 10 hours earlier was incapable of making decisions).  I was pulled out of the ER room so the docs could tell me what the CT showed.   Dad was resting quietly at the time (after a wild time getting the IV in so they could give him pain meds), but I went back in and told him that the docs knew what was going on but they couldn’t fix him.  HIs eyes were closed, but he nodded when I asked if we were still on board to get through this with as much comfort as possible.  He nodded when I asked if he was ready to see Mom.  And I promised I wouldn’t leave him.

Those last few hours  were (and still are)  so precious.  A couple of Dad’s very close friends, and his cousin had been up to see him.   I just watched, talked  to him a little, held his hand, kept his lips moistened, and whatnot.  Some say that being there when someone dies is’t really for the dying person;  it’s for who is left behind.   I’m not sure i agree with that completely, but it is true that I would have been devastated if I hadn’t been there for him, if he had died alone.    Whether or not he heard me didn’t matter nearly as much as  it did for me to know that he wasn’t alone.   He was showing some signs of abnormal brain activity (snout reflex when I used the swabs to clean his mouth).   The toxins were taking him.

I miss him so much, and yet I’m thankful that he didn’t end up in a nursing home.  He would have felt  so defeated.   He wanted a quick death (who doesn’t ?).  While the back pain had been around for months, the infection that killed him didn’t get to the point of  him being really sick until those last couple of  days.   He had time to give me more instructions, and spend time with close friends and family.   He didn’t “linger” which is what he wanted.   The Palliative Care team at Swede’s was fantastic.   They included me in nearly every decision.  That helped me feel like I was an active part of   dad’s final  wishes.   So yeah, I guess that being close is more for those left behind- but at the same time, you never know how much hearing remains, or what senses are ‘enough’ for the patient to know that they’re not alone.   And I had to keep my promise.

*** please pardon any typos… my eyes are ‘swimming’ as I’m ready for bed.  I’ll fix them tomorrow 😉

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.   😉

Do I Really Belong Anywhere?

When I look at the vast number of ways people can be divisive, I feel even more like I don’t belong anywhere.  Whether it’s political, religious, or anything else, I don’t tow the party line anywhere.  I don’t believe in any extremes.  I hate labels.  I sometimes don’t know exactly where I stand on things, but if it in some way makes people more distant from each other, there’s a really good chance I don’t want any part of it.  The only thing I’m definite about is my relationship with God- not how others view their own Christianity, but MY relationship with God/Jesus/The Holy Spirit… and those don’t need to be flashy and highly viewable.  I shouldn’t have to advertise it; and I shouldn’t have to hide it.

Because of my ‘religious’ beliefs (I detest the word ‘religious’- it screams of empty rituals and mindless devotion), I don’t like when people are labelled and judged by humans. I don’t believe we have the right to do that to other people. We’re human, a.k.a. fallible, and need to focus on our own shortcomings instead of being hateful  (Yes !  Christians are some of the most hateful people on the planet for those Christians who haven’t figured that out!). Check out Matthew 5 & 6… great chapters in the Bible.  Do I have specific feelings about specific issues? Yep.  But I don’t think many of those things need to be put up for public approval. Some things are between the person and God.  And, most really aren’t worth making illegal to clog up an already stagnant legal system even more. We need to keep the violent people contained…not someone who had an abortion after being raped, or something else that is seen as a violation against life and God.  When Christians use God to back up their own beliefs, it makes me sad. God can speak for Himself- and He has.  He told US to love each other, and to leave the judgement to Him.  

That doesn’t mean I don’t have my own beliefs and views on things. I do. But I just can’t stand the fighting about issues that are really very personal.   How does any Christian think that people who don’t have a relationship with God are ever going to see the benefit of knowing Him if Christians spend so much time belittling those they disagree with?  Is it not possible to have a personal (and deeply valued) belief system and relationship with God, and still reach out with an open hand to someone who thinks and believes differently?  Does being a Christian mean avoiding everybody who doesn’t show up at church 3-5 times a week?  That old ‘go ye into ALL the world….’ ?  I guess that was only for the olden days, eh? Seems that folks only want to be with like-minded folks, which is fine, until it becomes exclusive.

When I hear the far right talk about the ‘free’ entitlements such as Medicare, it makes me so sad.  Because of things outside of my control, I’m disabled, and on Medicare (and have been since I was 44 years old).  I worked as an RN for 20 years, and paid into Medicare and Social Security.  That ‘free’ Medicare costs me about $500+ per MONTH, to pay for premiums/co-pays so that I do have full coverage and the medications/supplies I need. Medicare is very deficient in many areas.  Medicaid is extremely difficult to qualify for; it’s not something that a person just goes and gets in line to receive.  It’s portrayed as the medical care that anybody can get if they don’t have something else, and that is absolutely not true.  For me to qualify for Medicaid help (during the times when I had a different Medicare supplement policy that left me with thousands of dollars in copays), I had a $2200/MONTH ‘deductible’ (called a spend-down).  That didn’t even leave enough for rent, let alone premiums, food, utilities, medications, etc.  I agree that there have to be requirements to be met in order to qualify…but I also know that those who find Medicare and Medicaid to be such ‘freebies’ just don’t understand.  It costs me $6000/year for the privilege of having ‘free’ medical care.  I don’t belong on that part of the  ‘right’.

When I hear the far left speak of ‘conservatives’ as people who generally hate most of the planet, it saddens me.  Many of my beliefs are conservative (stiflingly so to some), and yet I have met so many people from so many backgrounds and belief systems that I want to be inclusive.  Excluding people (who are not dangerous to themselves or others) from any part of society damages the whole of society.  When I look at the general decline of behavior as a whole since the ‘Leave It To Beaver’ days, I see that a dose of conservativeness isn’t a bad thing !  There is room for so much more than the black and white thinking that predominates every ‘side’ of any issue.  I don’t belong with the ‘left’ either.

I’ve been rethinking a lot of my personal views on a lot of things.  For the most part, that means that the people I grew up with probably see me as being wayward at best, and a heretic at worst.  I don’t fit anywhere.  I just don’t think that I know enough as a human to judge many of the ‘hot topic’ issues.  And I’m not afraid to admit it.  Yes, I believe the Bible.  But I also know that there are things that are known now that weren’t known in Biblical times, and changes in social and scientific ‘norms’ that cause me to step back from judgement and wait until the day I can ask God for myself, instead of categorizing  groups of humans, or specific activities- and in the meantime, try not to cause more divisiveness.  In the end, the nitpicking isn’t going to help anyone.  What is in my heart is what matters- and I’m OK knowing that God sees that better than anyone.

I’ve discussed my views on homosexuality with people who know me from the church I grew up in, and  with those who have no specific religious views, and it’s not surprising which group verbally beat me up for my beliefs.   I believe that being gay is biological. There. I said it. I don’t think it’s a choice. Or a ‘lifestyle’, like being a jet-setter or redneck, or something.  I’ve also talked before about the kids I saw when I was working as a pediatric RN, who had ‘ambiguous genitalia’ (that is a diagnosis based on biology)… those kids literally had either both male and female sex organs (internal and/or external) , or the only way to determine their gender was by sending their blood for genetic mapping.  Gender is determined by the X-Y chromosomes from the sperm, and are affected by the mom’s hormones while she is pregnant. If the mom is carrying a genetically determined baby girl, and for some reason has some surge of testosterone during the pregnancy at just the right time, why is it so hard to understand that the baby is affected?  If the baby can end up with externally visible gender ambiguity , why is it so hard to think that there can be biological changes in the brain that determine sexual orientation?  Regardless, I don’t know enough to judge someone. I’ve had many gay and lesbian co-workers, one transgender co-worker who was in the process of reassignment, and assorted friends and relatives who are gay or lesbian.  God loves them.  I love them.  SO, I don’t fit in anywhere.

Criticizing the President… Oy.  I shared some very anti-Obama things on FaceBook during the campaign, and I regret it.  I don’t trust Chicago politicians. Period. But he was/is our POTUS.  The office deserves respect, and once again, judgement isn’t my role. The entire political atmosphere scares me, but instead of being so negative, I need to wake up and do more praying than criticizing.  It’s never just about the man in the Office… no one person is responsible for the mess (or success) of a country. It’s not fair to bash our country’s leader, especially in the worldwide social media society we live in.  I also cringe when such stupid things are criticized, such as the sleeve length of Mrs. Obama’s dresses…. seriously?  Does it matter?  When every last thing is torn apart (instead of trying to see the positive), what good comes of it?  Constant criticism just becomes background noise, and nothing said by those who continue to tear things down is heard.  From then on, their credibility is going to be questioned by me (I tend to verify most of what I read online anyway 😀 ).   I don’t trust anyone in Washington, D.C., and the media is always suspect… I want the source, and their interest in the topic.

Another hot topic issue that I do have some personal opinions about is abortion. Specifically, post-rape abortion was  in the press this last year, and some really ignorant politicians made some incredibly stupid remarks. The body doesn’t ‘shut down’ and prevent pregnancy after ‘legitimate’  rape (is there an ilegimate rape?).  If a woman is ovulating when she is raped, she can very easily become pregnant.  I’ve been there.  I had an agonizing decision to make, and I found out very painfully why women consider abortion. I get it.  I couldn’t do it.  And I couldn’t talk to anybody about it.  I was told I was just stressed out because of the rape, and few people would even talk to me about the pregnancy.  I was blessed to have miscarried, though I feel horrible for those who miscarry that are wanting a baby. For me, it was the best outcome for a traumatized 23-year old brain. I’ll never forget that morning- both the horror…and the relief.

Adoption isn’t always the ‘perfect’ answer, either. I was adopted, and I have had positive experiences with my adoptive and biological families.  But I couldn’t give a baby away- and how could I raise a child of rape without prejudice?  How could I tell a baby it was conceived in violence with someone who terrorized me, and have that child ever believe his/her existence was a good thing?  Even if I truly did the best I could to be loving (and with my love for babies and kids, I probably would have done OK, but the whole thing was terrifying).  As an adopted child- who was always told that my being placed for adoption was a wonderful thing for my adoptive parents- I understand that underlying feeling of being a ‘mistake’, even in the best of circumstances.  I later found out that I was conceived with an abundance of love, which meant a lot to me. But growing up, especially as I entered and went through adolescence, I did feel like a fluke.  Being the product of a rape can never be something that can be smoothed over with later information should I have met the child (if I’d carried it to term and relinquished it), or managed to raise it with some degree of actual love and affection.  I don’t ever think abortion is an acceptable form of birth control; there are responsible ways to address pregnancy prevention.  But I ‘get it’ when someone is raped and just can’t emotionally deal with a pregnancy.  I don’t like it. I don’t support it. But I get it.  Once again, I don’t fit with so many that I grew up with.

The ‘morning after pill’… it does NOT terminate a pregnancy. It prevents implantation. Without implantation, even a fertilized egg will not result in a pregnancy. It’s simple biology.  The ‘morning after pill’ is not the same as abortion.  There are pills that do terminate pregnancies.  It is good to know the difference.

The more things there are to divide people, the more I don’t fit anywhere.  I can see many sides of an issue, and I don’t understand why others can’t do the same. Am I just stupid?  I’ve  generally graduated with honors, and done very well when I worked as an RN. Am I naive? Maybe.  Do I just want to feel like it’s OK to not hate one side or the other in order to ‘belong’? Absolutely.  That’s really all I want.  And to not be belittled for wanting that.   I’m glad that humans aren’t my Ultimate Judge.

Pediatric Dream To Pediatric Nightmare

I went to nursing school for one reason. I wanted to be a pediatric nurse for the rest of my life.  I loved my pediatrics rotation in nursing school, and the time I spent volunteering on the pediatric floor on Sundays (also during nursing school).  I babysat a lot as a teenager, and worked in the church nursery for 11 years. Then the real world and real life happened.

I moved away from the Midwest to Texas in late 1985.  The hospitals there didn’t have pediatric floors at that time where I lived, so whatever the kid had wrong with them, they went to the floor that dealt with that problem.  I worked in neurology/neurosurgery, so I got the kids who were neurologically impaired/sick.  A four year old near-drowning was my first ‘real’ sick kid.  She’d never recover.  At four years old her life was over.

The next 16 years, I worked with various types of patients, including adolescent psych and general medical surgical patients in a community hospital.  In adolescent psych, it was rarely the kid who was the train wreck, considering what they came from.  I timed contractions on a 12 year old who was carrying her dad’s baby.  She was terrified (understandably) and would never be able to erase that part of her life.  I also worked with a kid whose step-dad bit his finger off because he got upset with the kid.  The kid was remarkably pleasant, and didn’t have a resentful or  defiant personality.  Wow. Survivor.

When I moved back to the Midwest for family reasons, I was thrilled to be offered a full-time job on a pediatric floor.  Once I’d finished orientation, I’d be floating to the Pediatric Intensive Care Unit (PICU) for any critically ill child, and also Neonatal Intensive Care Unit (NICU) with the preemies.  I couldn’t wait to get started.  After 17 1/5 years of being a nurse, I was finally getting to do what I’d really wanted to do.  My previous experience was incredibly helpful, so it wasn’t a wasted 17  1/2 years. Not by a long shot.

I hadn’t anticipated the horrendous circumstances surrounding the majority of babies and children I encountered.  The congenital limb deformities, ambiguous genitalia (can’t tell for sure if they were girls or boys), organ failure (and the skin color literally that of Kermit the Frog in bright sunlight), the horrendous abuse cases on babies as young as a month old, and other terrible accidents and neglect.  We did have the ‘routine’ tonsils and appendix removals, but those weren’t the norm- most of them don’t get admitted for those surgeries anymore.   Most of the kids that came through there were going to be permanently disfigured or chronically ill.  Some ended up in the local children’s nursing home.  And those NICU babies that had permanent disorders from being premature had to go somewhere when they got sick. Again.

A ten week old baby shouldn’t have a broken leg (in a tiny cast) because mom’s boyfriend got mad and tossed it off of the couch after twisting its leg.  A six pound, one month old baby who had weighed more at birth, and gone through heart surgery, shouldn’t be left in a room, tended to mostly by the household pet who would react differently when the baby smelled too much, thus alerting the ‘parent’.  A fifteen year old shouldn’t be twisted in muscle contractions, in a vegetative state due to some fluke illness years earlier.  A first-grader shouldn’t have the skin tone of a kiwi fruit because of a failing liver. A toddler shouldn’t have part of its scalp torn off from a very random accident involving a hot tailpipe, and not being seen when the car was backing up. That kid actually was lucky in a bunch of ways… staying alive with no permanent brain damage was pretty significant.  If it was on the news, I met the baby/kid in the story.

Babies shouldn’t be born three months early.  They shouldn’t be considered ‘big’ at four pounds (but considering the babies that weighed 1/4 of that, they were huge in that NICU environment). They shouldn’t be born with only parts of their heads formed, and not visited by their parents like the ‘normal’ preemies. They needed to be held and cuddled, too.  Even if they’re a mess.  They still can respond by calming down, and nestling into the arms of a stranger called a float nurse.  Don’t they deserve that?  Why did the charge nurse thank me for just treating that little partially-formed headed baby like a b a b y ?

A two year old shouldn’t have scalded genitals and buttocks because another boyfriend of the mom decided to dunk it in hot water, and hold it there. That two year old should have cried during dressing changes. The kid had no skin left on that part of its body.  The kid had already learned that crying was pointless.  That kid should have been laughing and smiling when interacting with adults- not looking for some sign of impending abuse. At least that kid was loved by the staff- and before leaving was guzzling juice and eating all the Cheerios he/she could eat.  The kid was very good at hollering and directing traffic in a high chair at the nurses’ station before being discharged to foster care.  That was a good thing. The kid got some ‘normal’ before leaving.  It’s sad that ‘normal’ didn’t happen until being in the hospital as a crime victim… at age two.

I hated when I got a call that social services was bringing a mom up for a supervised visit. This would be a mom that allowed her boyfriend to abuse her baby.  This would mean I’d have to be there to defend the baby. I hated when she showed up and was not much more than a kid herself, and had the ‘deer in the headlights’ look on her face.  She didn’t really know what was OK to do to a kid, or what her boyfriend was capable of doing. She’d probably been raked over the coals when she was a kid. That never excused anything, but it could explain some things. And for those moms, there was usually more hope in that she was teachable.  The interaction with the babies I saw was positive, when the moms bothered to show up at all. But mom was damaged as well.  It was lousy all around. I hated that my anger wasn’t justified by some monster showing up.  I just had more ‘kids’  to be angry about.

I ended up leaving for many reasons (one was my own declining health; another  huge one being the cut in hours in the summer when the kids weren’t in school giving each other all sorts of contagious diseases).  The abuse was a factor.  Injuring a child just didn’t mesh in my head.  I got very protective of those little kids.  Their crime was existing, and that’s not good enough to justify their reasons for being hospitalized. Nothing is good enough to explain hurting a kid.

Pediatrics was a good experience in that I got the experience, but overall it was a tragic mingling of chromosomes run amok, congenital mayhem, and sociopathic people in the kids’ lives.  I’m glad I worked there, and saw what is out there.  But my dream job ended up being a horrific showing of the worst of things that can happen, either biologically or by psychopathy, with an innocent baby or child on the receiving end.

I have a lot of respect for the vast majority of the nurses I worked with on that pediatric floor, the PICU, and the NICU.  It tore me up.  I know those other nurses cared as much as I did, but they handled it differently.  Most had their own families.  I was single and didn’t have kids, so there was no ‘balance’ of how kids should be, living at home.  I didn’t have distractions to make my life less one-sided.  It was all about those babies and kids.

Something for the nursing students and new nurses out there: You don’t see the full job when you are a student.  When you are new, everything feels crazy for up to several years (there is a LOT of information to put together to make you a fully functioning, competent nurse).  Don’t judge what you think you want to do based on what you think it really is.  Wait until you know your strengths before deciding what is the best place for you.  I spent 11 years working in a church nursery, and went to nursing school wanting to take care of precious babies.  I just hadn’t anticipated how they got to the hospital.  Keep an open mind about where you fit in the nursing profession.  It’s never how nursing school shows it.  I hated geriatrics in school, and loved my nursing home jobs as an RN.  I didn’t think much of drug and alcohol rehab or psych when I was in school, but truly enjoyed my five years combined of both.

You don’t know what you will like until you really know what it is you’ll have to do. 🙂