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.   😉  ❤

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Hot Flashes, Menopause, and Dysautonomia

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For many years, I’ve wondered what it was going to be like to have the heat intolerance of dysautonomia, and the hot flashes of menopause. Well, now I know.  It’s like nothing else.  If you’ve ever been too close to a bonfire, and felt like  you were going to spontaneously combust, that’s close… but the fire is inside of you. You can’t move away from it.  It takes away the ability to focus on anything else.  It is all-consuming.  And, thankfully, it only lasts for 15-30 seconds, hence the ‘flash’ label.   By the time I get to the thermostat to set it on ‘freezer burn’, it’s over.  Then it’s back to the ‘normal’ heat intolerance of dysautonomia. I’ve had the AC on since January (in the middle of one of the coldest and snowiest winters we’ve ever had).  Now it’s summer, and the hot flashes are part of daily life.

Some other little treats I hadn’t expected with peri-menopause are nausea (literally like morning sickness, with no particular pattern), memory lapses (that go along with some leftover chemo-brain, and make me wonder if I’m becoming demented, but then remember that people who really are demented don’t wonder about it much), and changes in body odor.  Make that a stench that one expects amongst cross-country runners in the Sahara that have never had the luxury of showers or antiperspirant.  It’s awful.  Like I can smell myself, and it’s a combo of nasty pits, a landfill, and chunky, sour milk all wrapped into one.  Hormones, the articles say.  It’s all about shifting hormones.

I’d noticed some odd chin hairs for a while, and have a pretty good system for plucking… magnifying mirror, flashlight, reading glasses, and primo tweezers. Not a problem.  Or so I thought.  After the family Christmas party last year, I found one that was about an inch long (did I mention the vision changes that start pretty much on the 40th birthday?  I turned 50 last November, so my close-up vision is toast). I wonder how many family members saw it, and wondered if I was going ‘continental’.   I figured that was a hormonal thing.  But the nausea caught me off guard.  Fortunately, it does get better with some saltines and nausea meds.  The memory stuff is annoying, but I really don’t have to remember a lot, and the stuff I do have to remember, I write down.  The stink is manageable, but still annoying.  But the hot flashes?  They are “special”.  While I know in my head that it’s gonna be over soon, it’s intense for those few seconds. I keep wondering if I’m gonna leave charred areas on my recliner.

The dog seems to know when the hot flashes are going on, and she wants to get up on my lap with her hot furry self, and lie down on me.  😦   She’s been quickly pushed off of me  a few times, giving me a look of disgust.  I just want any exposed skin to have full advantage of the air conditioner when the flashes hit.  She can come back when it’s over.

The hot flashes happen several times a day, but not often enough to get any soy pills marketed for peri-menopausal women (I worry about side effects and interactions with my mandatory medications).  I keep telling myself that there’s a tradeoff for not having to ride the cotton pony every month.  I’ve been lulled into a false sense of “No Aunt Flo”, only to see her again three months since the last visit.  NO real warning, besides a day of boob aches, and then BOOM.  She’s back.  I’ll be glad when it’s all done, but have heard that sometimes the symptoms of menopause can be gone for years, and come back when someone is in their 70s and 80s.  Seriously? I might be 75 years old, and be wracked with a fogging stench and waves of blistering heat, whilst my friends are in their rockers, with an extra  lap robe and sweater on, and long-gone senses of smell?  I’ll be the odd duck, I’m pretty sure of that.   No point in thinking that I’ll turn ‘normal’ as time goes on…. that hasn’t panned out so far.  If anything, the dysautonomia is getting consistently worse (starting with the chemo).  Oh, bother.

Well, the wonder of those hot flashes is over.  I’m pretty sure they’d be awful with or without dysautonomia.  Seems like most women have them, with or without night sweats (knock on laminate, I don’t have those).  I don’t remember how long this is supposed to last… and in some ways, I guess it’s good that it’s started, so it can get on and be done with.  Until then, my thermostat is shifted more often than undies full of fire ants.  And with as much urgency.

Groceries and Dysautonomia

This one went to OH this week :)

This one went to OH this week 🙂

More on him in a while….

Before dysautonomia, I loved grocery shopping.  I’d go to several places for various things, and just truly enjoyed picking out fresh produce, making new things, and trying something different each time I shopped.  Now, I am thankful to get out upright and lucid, and home on my own power.

I’ve learned that it’s much better for me to shop in the middle of the night when others who are huffy about me being rather slow are home with their noisy kids.  It’s also cooler, and while I wear my ice vest year round (in the winter people have the audacity to have their heat on), it’s the only truly  safe time to go (well, as safe as it gets).  If I try to go when it’s 90 degrees outside (and humid, like we have in Northern Illinois, and most of the Midwest during the summer), it would be incredibly foolish.  I can manage a quick ‘refill’ trip for milk, ice, and things like that…. but for my main shopping, it’s a middle of the night affair.  Handicapped parking also helps (and keeps me as independent as possible).  And, I remembered to take my cell phone tonight !

I just went shopping a few hours ago.  This time was rather noteworthy as I’m just now back on the extended release form of propranolol (beta blocker that works for me).  The idiots that decide the formulary for the Medicare part D prescription plan (which I pay for– and get the highest coverage possible) opted to cut out the extended release versions of generic meds. GENERICS !  That stuff that was free (for the past 4 years) if ordered through the preferred mail order pharmacy every 3 months is now $75 per month. Each. In addition to the other stuff I have to pay out of pocket for, now there’s this.   And the premium – I’m paying for the privilege of not having good coverage.  I spent a LOT of time comparing Part D plans…. they all chopped the extended release of many meds (my main seizure med was cut back to the regular release unless I fork over another $75/month for that; that regular release works OK for me)- as well as muscle relaxants, nausea meds, clonazepam (even though it’s used for the dysautonomia, and adjunct to seizures- which is its original classification as an anticonvulsant- it’s a benzodiazepine, which are considered bad news for the usual Medicare population, so it’s not covered…. can’t depend on a doctor to know what his/her patient needs), and the inaccessible forms of insulin that would be huge problems with the ‘donut hole’ where coverage stops until another level of out of pocket costs is met.  So I get the stuff that has been around since T. Rexes roamed the earth (but thanks to Walmart, I have an option that I can get if I fiddle with my budget for other things- can’t NOT have insulin).  Sigh. Grumble. Arggghhhh.  😦    I worked 20+ years to give good care as an RN… and now,  I’m getting bottom of the barrel stuff.  But, at least I’m not eating cat food like some people resort to.  😮

I had to try the regular release propranolol, since $75 is HUGE to add into mandatory expenses.  And, it was a big failure.  Since the chemo for the leukemia back in 2010-2011 (19 months), the autonomic stuff has gotten considerably worse (not uncommon with chemo with people who do NOT have autonomic problems ).  It’s now making my thigh muscles shrink (adios strength that was pretty iffy to start with) along with the blood pressure, heart rate, fatigue, heat intolerance, etc., especially in the evening.  I was already taking an extra 20mg many evenings, when the facial flushing and tachycardia started, as I just watched TV- no trigger or physical stressors.   The regular release stuff had me sleeping up to 20 hours a day- waking up just long enough to take more meds, get something to drink, check my blood sugar, pee, and go back to bed.  That wasn’t going to work, so I had to fork over the $75, and add it to my monthly expenses list.  That means I pay about $700 per month for Medicare premiums, a Medicare supplement, out of pocket drugs (insulin, syringes- to keep me out of the ‘donut hole’ where there is no coverage), over the counter drugs,  Part D premium, dental premium, etc.   My rent isn’t much more.  That’s nuts.  BUT, I’m back on the ‘good’ propranolol (Inderal).  The good news is that I get enough meds to get free delivery for the out-of-pocket-cost meds. ! One less trip to the pharmacy.  That’s always a good thing.  Oh, did I mention that I’m now in perimenopause and have hot flashes?   They are definitely not the same as the normal heat intolerance.  For about 15-30 seconds, I feel like I have a bonfire inside of me.  Not good.

I made it through getting this month’s groceries, at the less convenient, but more options, grocery store.  I do have a friend who will pick up bottled water for me (city water here is like putting a straw in a swimming pool, there’s so much chlorine- and I actually have stalactites growing from my faucet, the water is that hard… I chip them off periodically; and my fridge isn’t big enough for a filter pitcher, and fresh food).  She’s great about dragging water over- but she also has a life, job, husband, and young kid.  My dad will help – but his idea of shopping is getting enough for 3 days.  I can’t function like that.  I have to get what I need, and be done with it.   I’m the one who deals with %95+ of my shopping… and unloading it from the car, putting it away, hating that I hurt for a day or two afterwards.  Fibromyalgia, degenerative disc disease, and arthritis don’t like shopping at all.

I do make use of Amazon and Schwan’s.   I think most folks know about Amazon, and they’ve started Amazon Prime Pantry.  It will require a $100/year fee, but I can get grocery store items in single units, at grocery store prices (decent ones), and as much as can fit in a box that is rated for 45 pounds will cost 6.99 per shipment of the whole box.  Plus there are perks with the regular Prime for non-grocery items. That is a good thing.  And there’s Schwan’s, that has frozen food that is actually good (the ice cream cones are addicting… I have to have very good blood sugars before I can indulge in one of those ) .  Many items are basically heat-and-eat.  Minimal prep (you can get raw proteins, but I rarely do).  The turkey and mashed potatoes, and sliced beef and mashed potatoes are really good…. they have great fruit and veggies, and also decent breads (I don’t use a lot of bread, so the smaller loaves or baguettes are great).  That has helped a lot.  My dad got me a 7 cu ft freezer for Christmas for my ice vest inserts and ‘back-up’ inserts- and it’s been way roomier than I expected, so I have room for a month’s worth of stuff, easily- and some bags of ice. It helps SO much to have stuff dropped off at the front door.  That is a huge help.   The dollar entrees (Michelina is the brand I get- both the lean and regular versions) are pretty good, great on the budget, and three minutes in the microwave equals a decent small meal (which I prefer).

So, now I’m home, showered, and getting ready to go to bed.   I had some nasty calf cramping when I got home, so took some magnesium and potassium along with a pain pill, and am seeing if that’s going to be enough before I go to bed, to not wake up having to step on my foot to get it to flatten, as it’s spasmed so hard into a ‘toe point’.   Also drinking some tonic water with powdered lime (True Lime)…. tastes great- and the quinine might help the cramping.  The fluids won’t hurt either.

It used to be so easy.  I’d lug stuff up to a third floor apartment at times (lived there for about 3 years- and only had 1 1/2 flights of stairs how the building was set up).  Thought nothing of it.   I was younger, and it was many years before the big D was diagnosed.   I never wondered if the ice vest was going to ‘hold’ (it actually draws heat away from me; I’m looking into some inserts that are actual ice packs for really warm situations). I didn’t know cooling vests existed…. or that people  had need of them.  I didn’t  wonder if I’d pass out, or be on the road home and have to pull over until a pre-syncopal episode passed.  Fortunately, I do have enough warning, and know what symptoms lead to what, for me.

I’m thankful I can still do what I do.  This will be the only time I’m away from home except for MD appointments this month.  There are no social outings.  I do want to go to a conservatory here that has amazing plants and flowers (camera op !!), but figure it will be heated- and that will require the ice vest, and rolling walker with the insulated bag for the back-up inserts.  I will have to wait until the fall now, for that to work.

I still think about doing things, and do what I can to stay busy at home (the reborn doll painting is helping…. here’s some examples of a doll I’ve done and sold- they start as blank vinyl…no color.  It’s my biggest activity now, on days when I can tolerate being in the chair.  I end up in pain, but I do love making something that (so far) three people have liked enough to buy 🙂   Totally off topic from shopping, but it helps the bummer days when I can do something creative- even if only 15 minutes at a time.  🙂   OK.  I’m rambling. Time to go to bed (it’s 7:30 a.m.).

Same one that is in the pink shorts and striped shirt.

Same one that is in the pink shorts and striped shirt.

Still  here... will be getting hand rooted hair (each individual hair inserted).

Still here… will be getting hand rooted hair (each individual hair inserted).

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"Caleb" kit 14" long, 2 pounds

“Caleb” kit
14″ long, 2 pounds

'Taite' kit 16 inches and about 3 pounds.

‘Taite’ kit
16 inches and about 3 pounds.  I redid her from one I bought…. I didn’t like how pale she was.

'Avery' sculpt 21 inches, and about 6 pounds

‘Avery’ sculpt
21 inches, and about 6 pounds.   She’s a thrift store rescue I got on eBay- and fixed up.

Scarlett kit by Cindy Musgrove 22 inches long 7 pounds 8 1/2 inches

Scarlett kit by Cindy Musgrove
22 inches long
7 pounds 8 1/2 inches

 

Do Nursing Students Learn the Names of Medications Anymore?

VENTING HERE !!!  I’m frustrated with the general group of people I used to work with.  I love nursing, and am SO thankful I’m from the ‘old school’ of nursing. I still have my license even though I’m disabled, because it means something to me.  I worked hard for it. And it was my main identity for the 20+ years I was able to work.  We still had to do things that are done by machine now, but actually had to DO them ourselves (vitals, handwritten charting, doing our own orders, etc- no techs or CNAs in most hospital jobs when I started… on an acute neuro floor, I had 14 patients on the night shift). IV pumps weren’t used much- we had to count the drops with our wristwatch, and know when the bag was due to run out BEFORE it did, so we didn’t risk a line clotting off.  We didn’t have pulse ox monitors- so we had to look at skin color, and other symptoms, and then call the doc to see about getting ABGs done.   Older nurses get mocked, but we did a lot with much less mechanical help. When something breaks down, who knows how to improvise?   When I graduated, I had to test urine to determine how much insulin to give.  Blood sugar monitors were not common, and even in hospitals, an entire floor (neuro and OB/Nursery in my situation; NICU got their own) shared the monitor when they first came out.

But my major beef when I go to the doctor’s office now is the lack of understanding and interest in medication proficiency when the nurses review my meds with me.  It’s a huge part of their job- and yet pronunciation is abysmal, and knowing what the meds are for is worse.

I am constantly stunned at how few nurses I encounter are able to pronounce the names of medications, and know the generic names of brand drugs.  It’s appalling.   I graduated from an ADN/RN program in 1985, and in order to do so,  our entire class  (standard practice in all nursing schools I knew of back then) had to memorize brand and generic names of ALL meds our clinical patients were taking, the reason for the meds, usual doses, side effects, SPELLING, etc.- and hand write them on index cards, which were checked by our instructors- no boxed sets of cards from the bookstore. No apps.  An index card and pen, with a drug reference book was our ‘app’.

Take some pride, dear nursing students- and full-fledged nurses! Make yourselves sound like you have the education you paid for (generally too much, if you started with some big  school).  Don’t stumble over the names… learn how they’re pronounced. Ask.  Sound like you’re in command of any medication review, or at least go look it up later if you don’t have to give an unfamiliar med yourself- then look it up before.  For hospital and nursing home nurses, know your patient base, and get familiar with the most common meds.  Generic, brand, what they look like, etc.   I’ve caught the wrong meds in those bubble cards in nursing homes more than once, just by knowing what they normally look like.  And hospital pharmacies aren’t perfect…. know what you work with ! Sometimes it’s just a new supplier.   Don’t be afraid to call and clarify something, or send it back to the pharmacy to be double checked.  If you give the wrong med, it’s on YOU.  Nobody else.

I’m at medical appointments more often than I care to think about because of multiple disabling diagnoses, and a routine part of each appointment is reviewing my current medications.  I have to keep track of two types of insulin, and around 10 ‘scheduled’ prescriptions, and more OTC meds that I take routinely. Then there are the routine supplements and many PRN meds- prescription and OTC (that’s ‘over-the-counter’).  And I can pronounce all of them, in their generic and brand forms.  It’s not rocket science.  It’s medical literacy.   It’s also the JOB of any working nurse who has to review or give medications.  How do nurses make notes about new orders if they can’t spell the name of the meds?   When checking meds against MARS, how do they know FOR SURE they’re giving the right med, if they can’t pronounce or spell the names ?  Or do you just figure you can look it up later and hope for the best?   Never stop actively learning (not just hearing things passively).  😉

When talking to the hospital pharmacy, do you know the difference between Xanax and Zanaflex?  Do you know which one is tizanidine and which is alprazolam?   In an emergency, do you know which one can be reversed with Romazicon (flumazenil) ?  Or do you  need a few minutes to go check, as the patient’s respirations drop to the point of needing intubation, when knowledge of the meds (and knowing where they are in the crash cart or emergency box) could save time and unnecessary procedures ?  If not, you really are not competent to give or review medications.  If it’s a weird med, or something given for a condition that isn’t common where you work, then ask the patient.  They might not know- but you might learn something if you take a few minutes after work to look it up.  Patients can be huge resources with oddball meds.

Nobody can know every last medication out there- there are times when reference books (or apps… I liked actual books when I was working) are absolutely needed and a necessary part of being  competent and conscientious.   But the medications that are commonly prescribed for various conditions typical to your work environment  should be part of any nurse’s engrained memory.   If you work neuro, know the meds for epilepsy, Parkinsons, MS, CVAs, increased ICP, etc. If you work pediatrics, know the general ‘rules’ for Tylenol and ibuprofen, and the different code meds that should be posted in the patient room with their weight and appropriate doses.  If you work drug and alcohol rehab, know the meds needed for ODs, detoxing, and what symptoms to look for during withdrawal for the various categories of drugs.  You should be able to pick up on mistakes- including those given to you when taking or checking orders.  I’ve had to call doctors back, and verify doses, when they  just didn’t seem  right when I was checking orders.  Especially when working in pediatrics, geriatrics, and with patients with renal insufficiency or outright renal failure.

I learned the most about brand/generic information during the time I worked in nursing homes (so don’t squawk if you have to take a job in a nursing home- you will learn medications in such a way that you will be better in ANY nursing job you have later on).  I learned about the fragility of doses in pediatrics- and how to dilute meds to give the precision doses required of a 2kg newborn. I always double checked my calculations with another nurse, and the pharmacy (we had a pediatric pharmacist available at all times, which was wonderful- but not having that is not an excuse to double check doses).    And, never to give any dose to any patient if it just didn’t seem right.

In general med-surg nursing, I learned about how IV drugs should be given safely (so if you think that you’re wasting time in a med-surg job instead of your ‘dream position’, consider it what your nursing school didn’t teach you- after you have to complete an ‘internship’ that didn’t exist 30 years ago).  Don’t skip the saline flush before giving the IVP, even if you know it still has saline in the lock from the last flush- you don’t know for SURE it’s patent- things shift, and meds can HURT if they go into the tissues.  My dad complained about his IV site for 2 days when he was given nausea meds, and there was never a saline flush before the med- just after.  It wasn’t an overt ‘blow’, but it wasn’t patent in a normal way. He was treated like he was clueless about his own pain during the medication administration.  SAS(H) is still protocol in any place I’ve been (check your facility P&P Manual).  Don’t be lazy.  Meds that are pushed through infiltrated veins hurt (yeah, I said that before).  Take a couple of minutes to do it right.  It takes much less time to check patency than it does to clean up a patient and full bed change from the nausea med never getting a chance to work, and the patient puking his toenails up.  And some compassion? That will go a LONG way.

If we didn’t know the information that made us ‘floor ready’ by the time we were to graduate, we didn’t graduate. Period.  Very simple. Our orientation was ‘here are the narc keys, there’s the bathroom, here’s where you punch in, and good luck’- as the off-going nurse snickered. If I was lucky, the ADON was still around until about 6 p.m.- after that, I was the only R.N. educated person in the BUILDING of 150 nursing home residents (I had the skilled wing of 30 by myself for 3-11, and another 30 dementia patients if I worked a double on 11-7).    Three to four days tops for orientation  back in the 80s.  A couple of weeks in the 90s, and then ‘babysitting’ for 6 friggin’ weeks with a preceptor in the 2000s, because nobody trusted that someone with a license actually knew what the job required. Very sad.  I had a nice preceptor who ‘got it’ that the job there wasn’t my first rodeo- and it was nice to have someone paid just to be a resource for me (my main ‘needs’ were:  how to call a code, how to deal with the abuse cases and social services when a parent visited a kid who’d been on the news for being beaten or burned, and dealing with the general procedures for dealing with new orders, which docs are user-friendly, etc).   Very sad to see the need for internships; when nursing schools do their jobs, nurses graduate with enough knowledge to not need internships.  Most places have a skills checklist that has to be completed to a respectable degree before being turned loose, but those were pretty basic.   Nursing school used to teach us how to not kill someone on purpose- and be safe upon graduation.  Boards weeded out the rest. We still had things to learn, but we could take care of a patient without a babysitter.   Now  many schools are for-profit institutions that really don’t care about your education or if you did or didn’t learn something… it’s on you to be the best you can be.  Some schools are better than others- and some still care, but it seems that actually doing procedures has gone the way of the pterodactyl.

The entire six weeks I was inpatient for leukemia (on neutropenia precautions, so isolated), not one student nurse ever did anything but follow my assigned nurse around.  Most didn’t speak.   When did this happen?  We were giving meds the second week of class (with supervision) and added any procedure from catheters and NGs to IVs and wound care as soon as we got patients who needed them.  Hands on.  School should teach you that !

Technology is a great thing.  It’s great to be able to look up various disorders and meds, but it should never be a replacement for actual knowledge.  Passing boards in 1985 meant getting at least %60 of 1000 questions (ONE THOUSAND) correct (which I thought was horribly low- that’s a ‘D’ percentage-wise), during a two-day, four-part hand answered test (little boxes were filled in for computer scoring).  There was no ‘luck’ in getting 75 questions right, and then getting a license.  We had to get 600 or more questions right. It took about 3 months to get results.   And the next chance was 6 months away if you blew it.   Three tries, and back to school if you couldn’t figure it out by then.   The way it should be.  Competence… not laziness with looking something up, and then forgetting about it.  When someone is crashing, there’s no time for the internet or computers.  You need to MOVE, and do it right.  Knowing meds is a huge part of that.

Have you been the only nurse at a code on a neuro floor who knew to ask the doc running the code if he wanted a Foley inserted BEFORE giving mannitol?  (and why?). Then have him ask YOU what the dose should be?  Have you HAD to find an IV site in a vein as proximal to the heart as possible, to give adenosine to a 13-month old who went into SVT, and had crappy veins- and knew WHY it was important to get that vein so close to the heart?  Have you known how long D50 lasts after giving it for hypoglycemia (and that every patient is different, both in how fast their sugars come up- and drop, and how ‘low’ they can be and still take something orally instead?). Do you know that D50 is unpleasant, with a warm, ‘gotta pee now’ feeling?   Do you know that D50 will wear off before the cab gets there to take the patient home from the ER if you don’t give them some protein to stabilize their blood sugar?   If you work on a floor where someone can code, could be diabetic, have reactions to meds, etc., YOU need to know the possible meds you may need to help them, and anticipate what the doc may order. And anywhere you work, there is the possibility of someone having multiple medical conditions and medications.  All medication knowledge is valuable.

Do you know that the elderly can have paradoxical reactions to things like diphenhydramine? Or that they can even get delirium from meds like cimetidine?  Or that they are not great candidates for most psychotropics, because of reactions, as well as fall risks?   Do you know that benzodiazepines that are discontinued abruptly (in anyone who has taken them regularly, but with even smaller doses in the elderly) it can very likely lead to seizures?  Do you know what meds are benzodiazepines?

Maybe things are overall better than I’ve encountered, but with my own experience with more than one doctor’s office and more than one nurse, the medication knowledge is poor.  Nursing communication websites also talk about how nursing school glosses over a lot of things.   Get the pronunciation right.  Know how to spell meds, and what they’re for- even if just a ballpark idea.  READ your nursing medication reference books (or apps).  Know what to anticipate if you have a 12 week pregnant 15 year old with diabetes,  kidney failure,  and constipation after an appy… what will you do if you get an order for Milk of Magnesia from the doc on call, if you forget to mention that she has renal problems?  Will you question orders for NSAIDs if she has any type of  pain?

Newbies, NEVER let someone rush you into giving something that you have questions about.  New nurses who don’t ask questions are very scary beings.  I’ve worked in staff, charge, supervisory, and department head positions (with an ADN).  And my first question when I was in charge or supervising, when asking the current nurses about any newbies, was if they asked questions or not. IF they didn’t I was following them like white on rice.

Be proud of being a nurse.  Knowledge is power, and it will never be anything but a benefit. It will make you a more valuable employee.   And respected by your peers and supervisors. Patients also hope that you know at least as much as they do about most of their meds.  🙂

OK.  Done venting.  It’s 6:30 a.m. and I haven’t been to bed yet… I’ll come back and be my own grammar warden later on 😉

The Social Implications of Dysautonomia

It’s so embarrassing to have physical reactions to relatively non-threatening stimuli.  My autonomic system has a very itchy trigger, and I have to limit what I expose myself to in order to avoid a considerable fight or flight reaction.  I can tell myself all day long that a situation isn’t any big deal, but if I get a ‘startle’ response, it’s out of my hands.  This can include something as stupid as reading something highly critical and ‘attacking’.  In my head, I know it’s no big deal- my heart rate doesn’t agree.  SO, I have to put walls up.  It doesn’t matter if it’s a stranger, friend, or family member – if they are ‘high risks’ for triggering a startle response, I can’t be around them or interact with them in any way.  Most of the time that’s no loss… but sometimes, I do miss the person.

Imagine how you get that ‘heart stop’ feeling when you’re startled suddenly and intensely.  That’s what it feels like, but it won’t stop.  If I can’t get the changes in heart rate stable, I end up having to deal with how to avoid passing out.  That becomes a safety issue- not just something unpleasant.

It’s embarrassing, and I’ve never really explained it to people, as I anticipate dismissive comments telling me to just get a grip and stop being a wuss.  I wish it were so easy.  The biggest part of my social isolation is related to temperature issues and having to stand for very long.  Pain is also a problem.  But the ‘simple’ interactions, and God forbid, disagreement (which intellectually, I have no problem with) can lead to some nasty hours of trying to get things back to my usual state of decrepit.  SO I isolate.  It’s not like I can wear a list of instructions on a t-shirt telling people to just be civilized around me.

Most of my interaction with people is online- and that is no less a problem. In some ways it’s worse, since people don’t censor themselves into respectful conversation… they just say what they want with no concern about being decent.  I know that nothing will improve with that anytime soon- if ever.  People are just rude and hateful.  SO, I ‘ban’ myself from most interaction, and block people when needed.   I don’t like it, but I have to be on constant guard, to protect myself from as much ‘startle’ as possible.

When Dad Had Surgery

Those who have read my blogs know that my family is no stranger to various cancers and health issues.  My mom had bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- all cancer. She also had chemotherapy and radiation. I’m a medical train wreck, including leukemia (APL/ AML- sub-type M3), diabetes, dysautonomia, multiple pulmonary emboli (all three lobes- acute, subacute, and chronic -all found at the same time), lung scarring, seizures, multiple concussions, yadda, yadda, yadda…  My dad has been the rock for both of us (mom died in 2003, after being 17 years free of cancer, but with 10 years of dementia caused by the radiation to her brain; she died from sepsis- not cancer).  Dad is the one who takes care of my beloved schnauzer when I’ve been in the hospital.  He didn’t own a bottle of Tylenol until a month ago.

Dad had to go to the doctor for an annual look-see before getting his year of thyroid pills refilled. The doc poked and prodded on his neck, as per usual, and felt ‘something’. He decided he wanted to get an ultrasound to figure out what the hard pea-sized ‘thing’ actually was.  Dad got scanned (I had to reassure him that it was painless and very quick), and instead they found a large (2 x 1.5 x 1.5 inch) mass coming up from the right side of his thyroid.  That’s BIG for the neck area- there are a lot of veins, nerves, arteries, muscle, windpipe, and esophagus related structures in there.  Now they wanted a biopsy.  Numb it up, take some needles and withdraw some of the tissue. They did that, and dad did well… the results, however, were inconclusive.  He was sent to a neck surgeon to figure out the next step.

The neck doc had seen the biopsy and ultrasound results, and felt that it was a cancer, but that it had actually replaced the actual thyroid tissue on the right side; the left side looked OK, at least from the tests.  The ENT surgeon (neck doc) decided to get a CT of the area to check for any lymph node involvement. He did feel that it was some sort of cancer, but reassured dad, and myself, that the vast majority of thyroid cancers are fixed with surgery. Dad should be fine.  But, in the meantime, they wanted to get some more biopsy material, to see if they could narrow down what was going on in there- but bottom line, the thing had to be removed.  It was too squirrelly to leave in there.

Dad is a guy who is 80 years old, and takes a lousy Synthroid pill every day. That’s it. He lives alone, runs around ALL over the place, has a social life that pretty well has him ‘booked’ every day with something, and has really never known anything about chronic or life-altering illness. He has been incredibly blessed.  He had a busted appendix in the early 80s- that was bad. But he got well. He had his gallbladder removed, and aside from post-op vomiting, he was good to go in a week.  He’s been remarkably healthy.  SO, all of this medical stuff that involved HIM was completely foreign.  Mom had numerous surgeries and became totally dependent on him during her last 10 years (he was amazing as he cared for her at home). I’m mostly independent, but when I’m in the hospital, he’s been the go-to guy to make sure my dog is OK, and my laundry gets done when I’m holed up. He has been really healthy.  This whole ‘being sick’ thing isn’t something he really knew what to do with.

While I know that I’m likely to outlive him, I hate even thinking about him not being here.  I have very few people around here that are very present in my life. I’ve got friends- mostly in Texas. The people I know here are mostly interacted with on FaceBook- most I haven’t seen in 30 years.  Dad is the person I talk to daily.  He’s the one who I know always has my back. I don’t have anyone else who could take care of a schnauzer in heart failure with medications (or who even knows her very well), or who I can call for just about anything.   I have some amazing and incredibly dear family scattered about… but dad is just a few minutes away. They are wonderful, yet my physical situation doesn’t make it possible for me to be all that mobile to see them all that much; I certainly feel that I’ve been too much on the ‘fringes’ to just call anyone.  Thinking that something could be wrong- and BAD wrong- with him was a lot to take in.  I have been going to MD appointments with him during this- partly because I want to be supportive, and partly because I’m an RN (disabled, but still have my license since I earned it, and it is MINE) and understand more of the medical terminology, so when we leave, I know how to answer his questions better.

The day for surgery finally came, and while a friend of his got him to the hospital, I definitely wanted to be there before he went into surgery. I wanted to talk to the anesthesiologist about his severe vomiting after getting Versed for other procedures (the anesthesiologist practically challenged me on that- said it wasn’t possible- must be the gasses used, even though it was the only common denominator the times dad had gotten sick- and a few times he hadn’t had ANY gas….time to back off when the doctor thinks he’s always right- wouldn’t help dad, and the doc wasn’t going to listen).   He ended up giving dad Versed, and sure enough, he was sick- though not nearly as badly as other times since they gave him more anti-nausea meds post-op.  Evidently, this type of surgery is more likely to cause a problem with nausea and vomiting because of one of the nerves in that area- which dad didn’t need to hear minutes before going into surgery.  He was already terrified.

They wheeled him off, and his friend and I began the wait.  It took about 3-3.5 hours for the actual surgery, then about 2 hours in recovery. After the surgery, the surgeon (who is wonderful) came out and talked to us.  The initial pathology report sounded potentially ominous. He thought it was a low grade lymphoma, and it might require chemotherapy. It wasn’t thyroid cancer. But until the final pathology reports were back in about 5 days, there wouldn’t be any more information than that.  No point in telling dad part of the story, so he could worry- we all planned to stick with ‘the final pathology reports aren’t back’ which was true, and kept him from spending days in terror thinking he was up against something terminal.  Nobody hears ‘cancer’ and their first thought is that it’s positive.  Since I’d been through extensive chemotherapy, my initial reaction was that he’d have that to deal with, even though most chemo isn’t a daily occurrence.  Most chemo is anywhere from every few months to a few times a week (until the time when pills are used daily for maintenance for a period of time).  I cried. I didn’t want that miserable existence for him…he was always on the go.  Having an indeterminate amount of time to deal with feeling lousy was no way to spend the precious years he has to live.  He’s no where close to slowing down.

Dad stayed in the hospital for 2 full days after surgery. More on that in another post.  He did  pretty well from a nursing standpoint, but from the perspective of a daughter, he had one rough day after surgery and was gradually improving, but it was still tough to see my active, never-holding-still dad lying in a bed, or sitting in very institutional furniture.  My dad who can graze his way through the day eating anything in sight was doing well to get a diet Sierra Mist down.  This is a guy who likes to eat!  He was nauseated most of the time (but can’t be the Versed!).

We got to the appointment to hear the final pathology report…more anticipatory tension.  We ended up getting some relatively wonderful news- yes, it’s a low grade cancer, and he’ll need scans to check the rest of his body for other masses- which may or may not have to be removed, depending on if they were causing trouble.  The mass was well-encapsulated, so not just spreading willy-nilly in his neck.  Also great news. The surgeon thought it had been there for 5-10 years, it’s that slow growing. He’ll be seeing an oncologist after the scans to find out what was next (come to find out, he’ll be seeing my oncologist, so I could reassure dad that he’s a good guy).  I got some label for what the description of the mass was, but when I looked up the words online, it was more confusing than helpful; will wait to ask the oncologist 🙂

Dad is going to be OK.  The doc said that this kind of cancer won’t kill dad. It’s quite probable that he’s going to have another 10 years of quality living.  That is a huge answer to prayer.  Yes, one day dad will die. But thankfully, it won’t be anytime soon. ❤

The Little Things That Made Her Her…

My mom died in March 2003.  She had survived cancer multiple times (breast x 2, lung, brain).  She got through surgeries, chemotherapy, and radiation.  And lived 17 years longer than her last cancer diagnosis.  What was worse than all of that was the dementia caused by the radiation to her brain.  It sucked the life out of her one cell at a time.  For over ten years.

When dad was going through her clothing to decide what was going to be donated to charity thrift stores, he had me come over to be sure there wasn’t anything I wanted.  I was fairly certain I could go on with life not owning her socks. There were very few items I wanted- the Christmas sweater she wore so much when I first moved back, and some goofy shoelaces she got at the San Diego Zoo.  That was pretty much it. In her ‘normal’ state, she never would have worn goofy shoelaces.  She could be a bit on the prissy side, and only pricey name brand shoes with the shoelaces they came with would do.

Dad and I were getting to the end of the stuff he wanted to go through, and we came across a rather dull shoebox.  I opened the lid, and that’s when I lost it.  Inside, her  hairbrush and make-up case (still with the make-up she hadn’t worn for years in it) were like a time capsule.  Dad did a good job of keeping her clean and dressed, but in mom’s ‘normal’ days, she had herself put together  from head to toe.  Her hair was perfect, and she always had make-up on in just the right amount.  I couldn’t let go of that make-up case or hairbrush.

Some of the things mom did when she was demented were SO unlike her.  She had always been so mannerly and socially proper.  With the dementia, she was clueless. She’d munch on the shrimp ring at holiday events as if it were for one person- HER !  When she’d get done on the bedside commode, she didn’t wash her hands unless she was told to and given the supplies. She had no problem immediately reaching  for the gumdrop jar I kept for her when she and dad visited. If  dad couldn’t get to her fast enough,  she’d be happily munching on gumdrops.  She was generous however, and would offer those gumdrops to me after her unwashed hands had been wandering through them.  “No thanks, Mom- I’m good.  You can have them…”.  I’m so glad she didn’t know how far she’d sunk.  It would have finished her.  The disease was making a mockery of her former self.

She never left her bedroom (with adjacent bathroom) in the morning without putting on her make-up and doing her hair the way she wanted it to look.  I don’t remember her ever having breakfast in her robe. She was always dressed and ‘made up’.

I’ve still got those personal things in that shoebox, along with assorted sympathy cards and things from the memorial service.   I never had any real use for them, but they represented what she’d been like.  They gave me back a piece of who she was before dementia took one piece of her at a time, over a year at  a time until she no longer was who she had been.  In many ways, the mom I knew was never going to leave that box.  So I had to keep it.