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).

)

"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 😉

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now…

Read at your own risk 😉

This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or those with previously diagnosed dysautonomia.  Add in some menopause, and changes in some medications/insulin- and the party just keeps getting better.  I’m tired of trying to figure out what is from what (fibromyalgia/chronic pain, chronic migraines, chronic headaches, reactions to foods, etc).

This past weekend (a few days after two epidural injections- one in my thoracic spine, and one in the lumbar spine), I had some horrific nights with severe leg spasms and cramping. Normally, I don’t have any type of reaction to the steroid injections, other than a day or so of higher than usual blood sugars, so I didn’t really think that was the cause.   I’ve had these  spasms before, but usually getting up once and forcing my feet into a ‘flat’ position, then walking around for a few minutes generally helps.  Friday night was like that.  Saturday night was a nightmare.  I was up every 45-60 minutes, with spasms that actually made the calf muscle (the ‘drumstick’ one) have an indentation in it (like a shallow dish) until I could get the muscle relaxed.  These types of muscle spasms are incredibly painful, and I find myself doing  sort of breathing that reminds me of someone giving birth on TV. Or acting like it.

I finally gave in and called my pain doc early Sunday morning – around 7:30 a.m.  He was very prompt in calling back, and heard me out when I  asked about serotonin syndrome- which he didn’t think was likely. That was good news (no need to go to the ER).   He did  tell me to not take the tramadol anymore, just in case.  I’ve been on methadone for pain for several months now, and had noticed that it wasn’t working as well with that original dose (which spooks me after watching people detox from methadone when I worked drug/alcohol detox.  It’s THE worst type of detox that I’ve ever seen -and I’ve seen lots of alcoholics, cocaine/speed addicts, heroin/opiate addicts, and benzodiazepine addicts- they have a ‘bonus’ 10-15 days after they stop taking the benzos, with another round of acute symptoms, etc).  I’ve been chicken about even taking methadone- but it’s a legit pain med, not expensive- AND, when used as prescribed, it’s safe. I use it as prescribed, and it still gives me the creeps.  I’m lucky to have found a pain doc who doesn’t just write prescriptions right and left.  There are ‘rules’ for being one of his patients.  I respect that.  At any rate, he told me to take a bit more methadone then and another muscle relaxant, and try to get some rest.   I did as I was told, and did get some sleep.  During the worst part of the spasms, it feels like the muscle is being torn from the bone- that has stopped, thank God.   Today has been one of fatigue- but no more spasms.

Trying to figure out what is going on when I start having symptoms can be tricky.  I had e-mailed my primary doc about the symptoms on Friday evening, and she wants me to have some lab work done, which is a good thing.  As a diabetic, I’m a little on the paranoid side about my kidneys.  The chemo was hard on my blood sugars, and I’ve got them MUCH better- but still some wacky ones here and there.  I’ve had a lot of peripheral and autonomic neuropathy symptoms- so that’s sort of my ‘default’ assumption when something is weird.  I get flushed, my skin is hot- but I can feel cold (strange for me), I get blotchy areas on my chest, and in general don’t look OK….

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

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

It’s hard to know if muscle cramps could be from potassium, sodium, calcium, or magnesium deficiencies (and those can get really bad- as in don’t make plans for next weekend, since you could be six-foot under by then).  Bulimics are very prone to those- and electrolyte deficiencies are big in sudden deaths from eating disordered patients.  But I’m not in that category any longer, thank God.  The peripheral neuropathy (likely diabetes related) in my legs doesn’t help.  My thighs have deteriorated, and actually shrunk (posterior thighs)- so they tend to hurt faster than before, after doing anything.

My blood pressure has been crazy again (directly from dysautonomia changes), and I’m going to have to start a different form of propranolol (Inderal), as every Medicare part D (drug plan) formulary I checked has cut out the extended release from the generic list.  It’s been generic for a LONG time- but now it’s priced in the ‘preferred BRAND’ category.  I have too many meds to spend a $42 co-pay for 90 days for one med (well, actually two- they cut the extended release seizure meds as well- but I do OK on the regular release form of that).  I already have to pay out of pocket for insulin and syringes, since getting them would push me into the ‘coverage gap’ (donut hole) requiring ALL meds to be out of pocket- which is a map for going straight to non-compliance.  And a non-compliant patient is loathed by medical professionals.  Doesn’t matter WHY someone doesn’t take their meds. There are a LOT of us out here who have to juggle medical expenses to be sure there are funds for the entire year.   Medicare is not free.   Anyway, the symptoms are acting weird, and some days, it’s hard to get much of anything done.  BUT, I still have so much to be thankful for.  I can still think, and put together what I think is going on so I can tell my docs the information they need to know.

Menopause is a special little treat that makes the dysautonomia worse. I have had a few hot flashes- and thank GOD that they aren’t the same as my general heat intolerance.  They are brief, and feel like fire from inside… I adjust the air conditioner (had it on when it was 17 degrees Fahrenheit this winter), and ride it out.  I hadn’t expected the ‘morning sickness’ from the hormonal mayhem, so Phenergan and Zofran have become good friends.

Oh well, done venting 😉   It’s been unpleasant.  But, I’m still living indoors, and have the blog and other online interactions (though the public comments on most sites aren’t worth the nastiness).   I’ll get the blood test done this week.  Onward !

UPDATE:  The Propranolol LA 120mg (generic for many, many years) is actually $77 per MONTH out of pocket.  And I have to have it.  I tried the regular release and all I did was sleep, get up to take meds, and sleep some more.  My life is limited, but being awake is one of the perks I do look forward to.

When There’s a Death In The Family

On March 2, 2014, my fifty-five year old cousin died. She would have turned fifty-six in May.  She was only five and half years older than I am, and my closest cousin on that side of the family since we reconnected as adults.  While she lived about 80 miles away, we stayed in contact by e-mail, phone calls, and the yearly family Swedish Christmas Eve party.  I’m still sort of numb, though her death didn’t come out of the blue.  She had a particularly evil form of cancer.  But it’s hard to really accept that she’s gone. She’s the first in our generation of cousins to die, who lived past infancy or early childhood; there were some tragic deaths of infants and children in the family, including my cousin’s older brother at age seven, when she was eleven months old .   If anybody could have beaten this, it would have been her.  For a while, she seemed to be handling chemo relatively well (it’s NEVER easy).  The complications  from the cancer and chemo were another story.  My brain isn’t working that well in writing this, so I apologize ahead of time if it’s scattered.  It’s disjointed, and it’s really, really long…  (for my cousin, the textbook editor… always succinct and grammatically proper… oy).

Our grandmothers were sisters who came to the US via Ellis Island from Nordmaling, Sweden (WAY up on the northeast coastal area, Lapland, reindeer, midnight sun) in the 1920s. They came over on the ship called the ‘Drottningholm’, leaving from Göteborg, Sweden when they were in their late teens and early 20s.  There were 13 siblings in all, and most of them came here, settling in the same general area in the Midwest, in and around Chicago. Nobody spoke English before they got here. They left everything they knew to start a new life .  Eventually, many moved all over the country as their families grew, and jobs took them away from the Chicago area.  Our parents are first cousins (at 81 and 89 years old)- both still very much alive and running around.

When we were kids, that five and a half year difference in age was huge, and I was in the ‘little kids’ group of cousins when we got together for family parties.  The big  yearly family  party was the Swedish Christmas Eve  shindig , and it was THE family party to look forward to  (crazy, crazy fun party !!). There is still a smaller version, that is equally anticipated and keeps that Swedish heritage alive, which is such a treasure.  Whenever possible, family came from all over to attend that party.  I’ve blogged about that elsewhere 🙂   I adored my cousin. She was ‘cool’, and always nice to us younger kids.  I was also the recipient of some of her outgrown toys when I was a little kid, which I still remember (really nice doll buggy, and a whole set of ‘Little Kiddles’ – little 3″ tall child dolls who had their own house that doubled as a carrying case !!).  We lived in the same city for many years, which not all of the cousins did, so I’d see her more often than many of the others of that generation. It was still only a few times a year, yet it was often enough to really like her and enjoy the times I did see her ( there were two of the boy cousins closer to my age that I saw regularly throughout the time I lived at home, before moving to Texas after nursing school in late 1985).  This cousin was someone I looked up to as a kid, and was so glad to reconnect with her when I moved back to my childhood hometown in late 2002.  I moved back a few weeks before Christmas Eve, so we saw each other  for the first time in many years at the now smaller Swedish family party.  We quickly became as much friends as  we are cousins.

When this all started last June 2013 (thereabouts), she called me a few times about some troubling symptoms, and her intense feeling of being discounted by the first gastroenterologist she saw (I later suggested she send her first full colostomy bag to his office).   I’ve been an RN since 1985, and she had some questions, and wanted to know what I thought about this guy saying  she was fine except for a minor problem (for which she was given some topical medication), and did that sounded ‘right’. Though disabled, I still keep my license, and need the 29 years of knowledge and experience to deal with my own medical issues- and am always more than willing to be a sounding board or ‘medical translator’ for family and friends.  This is a cousin who called me in the past for some of her family and  own questions when medical issues came up, and I knew that she knew her own ‘normal’ very well; she needed to listen to her ‘gut, in my opinion.  She’d been in France a few  weeks earlier, and had some vague symptoms there, and they were getting worse.   I told her that if she felt that something wasn’t being addressed, she might contact her primary doctor for a referral to another specialist.  And she did.  She was able to take a scheduled ‘fun’ trip to California after the initial specialist appointment, before seeing the new specialist.  While I was glad she was able to travel at the time, I’m even more thankful now that she was able to have two great vacations before her 9 months of hell began. 

She had an appointment for additional testing, but before she got there had a severe episode of rectal bleeding while at work, and was immediately driven to the ER at a nearby hospital.  She got the preliminary diagnosis (from a tactless ER doc) that she had a rectal mass.  She had known something wasn’t right.  She was admitted for more tests, and long story short, she was diagnosed with a neuroendocrine colon cancer after surgery and the full biopsy, which surrounded her rectum about %75 the way around it (basically like a fist around the end of her colon), and needed a permanent colostomy.  Surgery  took a little over week to actually get done, and in the meantime, she was in intense, constant pain.  She had a moderately ‘normal’ recovery from the surgery, and had to get used to the colostomy, and some decent pain management.  From there, she spent some time in a rehab facility to regain her strength before going home. I remember there was more going on (I still have some brain fog post-chemo), but she was looking forward to getting on with treatment. At that time, the plan was to treat it, and her plan was to do what was needed to  recover, and keep the part of the tumor that couldn’t’ be removed in check.

Now, I get mixed up as to what happened when, but over the next 9 months (give or take a week or two), she had non-stop hospitalizations and  complications with chemo and the cancer.   They were unable to completely remove the tumor because of how it was positioned and the nearby blood vessels, so lymph nodes in that area and additional tumors (spread from the main one) in her liver began to be an issue, growing and causing pressure.  She was given  various types of chemo (including a clinical trial ‘cocktail’ of already approved meds used for a different type of cancer, that was being looked at for neuroendocrine tumors), and I really felt that if anybody would be in the ‘survivor’ percentages, it would be her.  She was in otherwise  good health, and she was young, especially for this type of cancer.  But, neuroendocrine tumors are absolute bastards in the tumor world.  When I was looking up information when she was first diagnosed, I was horrified at the statistics… but I still thought that she had a chance.  It’s never over until it’s over. (Valerie Harper was diagnosed with a brain tumor and given three months to live; that was fifteen months ago, and she has said “Don’t go to your funeral until you’re dead”, and did ‘Dancing With The Stars’.  I love that. 🙂  )  And those statistics never differentiate between ages, other health issues, or actual cause of death. If someone dies crossing the street on the way to their appointment, they are included in the deaths from whatever disease is being studied and reported.  SO, someone who is 85 years old, with multiple chronic diseases, who is hit by a bus going to the store is still included in the cancer death rate because they died during some particular study.  So statistics are iffy- they are a reference point worth considering, but not the be-all, end-all ‘rules’ of survival/death.  I was looking at the possibility that a 55 year old female in otherwise good health could be in the small percentage of survivors- why NOT her?.  I couldn’t see it any other way… but I knew it would be a hard battle.

In the months she was being actively treated, she had a kidney stent (she called me about some nagging and increasing flank pain- and she was right; something was wrong– there was pressure on her ureter from the mass of lymph nodes, cutting off the flow to the bladder from the kidney- so her kidney couldn’t empty out, causing a lot of pressure and pain), low potassium and magnesium, constant vomiting (which can be a cause AND symptom of low potassium- ‘nice’ vicious cycle there),  an infection that I’m foggy about,  multiple fractures in her sacrum, blood clots in her legs, fluid around her lungs, a LOT of pain, multiple adjustments in her medications, a port placed (for giving chemo and drawing blood to avoid multiple IV sticks), medications to deal with medications, a new kidney stent, a lump in her neck from lymph nodes-which caused arm pain from the lump pressing on nerves, and on and on. And during it all, she was mentally going on as if she was sure she would be fine in the end.

I have over 700 e-mails between the two of us from the time just before she was diagnosed until January 2014, when I noticed things were changing because of the change in communication.  She wasn’t answering e-mails or posting as much on the support site for friends and family.  That was different. Something wasn’t right.  I didn’t call her much.  I knew she needed rest (and she had friends who were visiting her, which was SO wonderful), and if she didn’t answer e-mails, she wasn’t online, or up to ‘talking’/communicating. I understood that, and we had  an  arrangement that if she wanted to call, she could- and if she were at a facility, I’d call her back on the room phone so she didn’t have to use her cellphone minutes.  If she was home, she called from her landline.  I waited to hear what was going on from the site set up for family and friends as well.

I saw her at Christmas, and she was in ‘new’ pain (I was SO glad to finally SEE her after all of the  e-mails and phone calls !).  That would turn out to be the fractures in her sacrum, which she had to have glued back together.  She had her bones glued. Back. Together.    She never got a break during the entire 9 months.  There was always something else she had to deal with and/or get treated.    I cried a lot, as I knew that each time she called with something ‘not right’, it meant that the cancer was not giving up to the chemo.  In February, it became official.  The clinical trial meds weren’t working (and those aren’t given when there are ‘known’ medications that work) so that was already a sign that things weren’t going well at all… but someone has to make it, right?  There was nothing left to do. It was a matter of time, and not that much of it.

She called me in mid-February after being discharged from another rehab facility to help her get stronger after the hospitalization for blood clots, fluid around her lungs, neck nodes,  and getting her bones glued.  She  told me the doctors had no more  options for additional treatment. I’d already been told that her prognosis wasn’t good (from dad, via uncle, then e-mailing her mom, who called me back) , but I asked her if she’d been given any time frame and she said she didn’t want to think about time limits. She also said she didn’t feel like she was dying.  I’d learned a long time ago that patients do have some feeling of when their body is not going to recover.  My answer was  “then don’t” !  (Real clinical and technical, I know…).  I didn’t say anything about the time prognosis I’d talked about with her mom.  She didn’t need me to have some sort of mental countdown going on… so I blew that off as best I could.   She said she wanted to check out some alternative healing options and knew of a Chinese medicine doctor  nearby, and I told her she had nothing to lose, and who knows?  Something might help her at least feel better.  So much of Western medicine comes from natural sources (plants, animals, etc).  Why not?  I encouraged her to do whatever she felt was right for her.  She didn’t have anything to lose, and only something to gain.   She wasn’t ever able to find alternatives… she ended up on Hospice shortly after that phone call.

That was the last conversation we had about getting well.  She called me  a few more times, and each time she sounded weaker and more tired, sometimes a little foggy.  She wanted to know about how hospice decides when to do things, and when not to, and if palliative care was better (she wanted to be at home, so that pretty much answered that).  The last time we talked was within a few days of her death, and by then she sounded almost deflated and she told me she was tired of ‘all of it’. She was still denying any feeling of  ‘actively dying’, yet also sort of saying she was ready for it to be done.  She also asked me why I was able to get well (from the leukemia I had diagnosed in late March 2010, and had 19 months of daily chemo to treat, including 50 infusions of arsenic trioxide).  It wasn’t in an angry way, or in any way ‘upset’ with me  for surviving… it was almost a childlike tone, just wanting to understand the incomprehensible. I really didn’t have an answer, except that she got a meaner cancer than I did.    I told her I had just gotten extremely lucky to have been diagnosed while there was time to treat it.  Many people with what I had are diagnosed at autopsy; I know of two people, one a child, who were gone within two days of diagnosis.  I also told her to do this next phase of her life (the last days) however she needed to do them.  I guess it was how we said good-bye.  I didn’t know how soon ‘it’ would be, until I got word from the support site posts that she was sleeping most of the time, and rarely woke up…then I read she had a brief period of awareness and drank some juice.  That is common very close to ‘the end’, and I knew any calls I got from family would be to tell me she had died.   And that’s what happened.

Cancer is a mean, nasty disease, and there are various forms of cruelty that it can throw out to torment people.  She got one of the worst I’ve ever seen in the 20+ years I was working in various areas of nursing, and with other friends and family (my mom had breast cancer, second breast with suspicious cells, lung cancer, and brain cancer and all of the treatments and surgeries with those… and then dementia from the brain radiation, and lived for another 17 years cancer free).  My cousin never got a moment’s reprieve from agonizing pain, or if the pain was doing better something else would go wrong.  It was SO unfair.  It’s never ‘fair’, but she went through more in nine months than most people go through in a lifetime.  It’s not really fair to compare people’s diseases , since whoever is going through something like cancer is feeling pretty scared, and having their own journey with their disease, but from an objective standpoint with nurse eyes, she had it really, really bad.

One thing that she was so consistent with (even before the cancer)… she always knew when something wasn’t right.  She knew when there was something brewing or just outright wrong .  She knew her body- even with all of the ‘new normals’ she had to get used to- and she got things taken care of when she knew things weren’t right.  Everyone needs to do that.  She’d call me and ask what something might mean… and if she should call her doctor then, go to the ER, or wait until office hours (depending on what was going on).  Sometimes she needed an explanation about something, and sometimes I encouraged her to call one of her doctors (we’d figure out which one to start with since she ended up with several).  Other times, I encouraged her to get checked out as soon as she could.

I will miss her so much.  I already do.  And yet I’m glad she isn’t being tormented by that nasty tumor and it’s offshoots and chaos any longer.  She went through all of this with such grace and dignity, and never gave up the idea that she was going to be OK, until the very end.  And then, she went peacefully in her sleep with her mother and housemate at her side.   I’m not going to be able to go to her Life Celebration because of my own medical issues (and the logistics of getting there with various equipment).  I’m upset that I can’t be there.  I know she’d understand, since she knew I couldn’t attend but a couple of hours of the Christmas parties, after dinner was over.  I’m just really sad.  I wish I could hear more about her from the people who are going to be there.   I’d like to be there for her mom, and her  brothers (who have had to say goodbye to two children/siblings now) and their families.  So instead, I write to clear my own head, and in some very small way, pay tribute to my cousin.  There are a lot of things I’ve thought about during this past nine months, and how my cousin made my life better just by being herself.  As adults, we had a great relationship, and I found her to be   a kind, compassionate woman, with a great sense of humor and an amazing work ethic.  She was never judgmental.  She looked for the good in everything we ever discussed.  She was loyal, and able to help me out with her own perspective on a difficult situation. She knew how to have a conversation without injecting drama.  She let me be there for her, when I often feel like I’m not useful for a whole lot anymore.  I just wish it had been for something that left her here (I’ve never had a ‘nurse call’  be for anything good 😦  ).  It’s always hard to say goodbye to someone, and someone in my generation in the family is just plain scary.   Especially someone I really cared about, not just because we’re related, but because she was a person who added so much good simply by being.

I will love you always, K.P.A.

Vintage Baby Bottle Collection

Edit:  BECAUSE images were stolen from this post, they have been removed.  empolo.com has one shelf posted on “images” when you search for vintage baby bottles.  WorthPoint and Little Stuff are other sites that took my photos for their pages.  People on Pinterest have also been using my photos without permission.  Save the lectures about everything on the internet being up for grabs.  Decent people have values, and don’t take things without at LEAST giving credit where credit is due.

I’ve had a vintage  baby bottle collection for several years, and have found out from various sources (eBay, websites for collectors, etc) that there are a lot of us out here !! 🙂   My collection started via the realistic baby doll collection, when I wanted to get a ‘period’ bottle to put with a doll that had an outfit that was from the same time period as when I was born (early 60s), along with a vintage 60s infant seat for a complete display.  I wanted it to be a cohesive ‘set’. So, I found my first one at an antique store in Comfort, TX (near where I lived)… a 4 oz Evenflo glass bottle with the black ring and disc- perfect !  It was the black ring and disc that were the hardest to find, as well as the vertical Evenflo name on one of the sides of the bottle.

Then I started seeing vintage bottles now and then at thrift stores, as well as ‘hospital issue’ newborn nursery type bottles, which was what the doll collection was beginning to look like- a nursery!  The local Salvation Army Thrift Store manager would see things come in and hold them for me (I was in there many times a week- big entertainment in the small Texas town I was living in).  Thus began a bigger effort to find bottles that reminded me of babies I’d known, or times in my life, as well as my original dream of being a hospital nursery or NICU RN (that’s why I went to nursing school…that’s covered in another post).  That grew into wanting to get a bigger representation of how babies were fed over the many, many decades of bottle-feeding.

The next ‘dream’ bottle was one of the old white Playtex nursers with the pull-over nipple.  I’d known many babies who had those, from friend’s siblings, to neighbors, to babies I babysat.  I never thought I’d find one, when low and behold, my Salvation Army ‘dealer’ showed me an entire bag of the white ‘shells’, some caps and retaining rings, and a few of the old nipples.  Nipples are always the biggest issue in getting a complete bottle, as latex deteriorates over time.  First they discolor (not usually a display/collection issue), then they become stiff, harden, and start to crumble… not something I desire in my collection 🙂  I had several complete bottles  (minus the insert bags I could find at the grocery store- those hadn’t changed enough over the years to be an issue).  I later sold two of them via eBay for over $80 to someone who lived about 100 miles from where I got a bag full of them at a thrift store for 8 bucks.  One  was also sent to Switzerland.

Once I discovered eBay (in 2004), it was game on !  I found many more Evenflo bottles (different models), along with old Davol, Storck, Hygeia, Curity, Gerber, Nursematic,  and the various versions of old Playtex bottles of the old brands of ‘home use’ bottles.  I also got some really old hospital nursery bottles from Similac, Enfamil, SMA, Wyeth, and some others I have no clue about, other than some vague assumptions about the general time period they likely came from. A few have the paper labels with the actual dates/expiration dates (1960s).

I’d never had much interest in the bottles from the late 1800s, since getting decent nipples had been nearly impossible.  Well, eBay to the rescue again !  Someone in the UK found some ‘new old stock’ in the basement of an old pharmacy- meaning they were brand new nipples that had been forgotten, and saved in perfect or near perfect condition.  WOW !  I’ve been able to put together complete bottles with those, and have a history of bottle feeding on my shelves ( which are being rearranged to display them in less of a ‘sardine can’ manner). I still have a few of those left if I find a narrow-neck bottle that would be nice to have, and doesn’t have a nipple. Note the aqua box in the second photo- more on that in a minute !

I’ve discovered some interesting information along the way when researching the time period bottles have been from, and even some of the ways bottles were used to advertise anything from formula to diaper services to insurance.  I’ve acquired some odd triangular Evenflo bottles (that the Evenflo company couldn’t pin down the production dates for, though the font is a clue; we agreed that they were likely from the 70s).  I’ve also added some more recent bottles that will one day be vintage- and mine will be in perfect condition 🙂

The bottle in the aqua box is called a ‘banana’ bottle.  They didn’t  have nipples on both ends.  Both ends were open, and one would get a pullover nipple, and the other end was covered by the finger of the person feeding the baby (over a latex ‘barrier’) to adjust any flow rate issues.  Before nipples, pieces of wool, leather, or even wood would be stuffed in the hole at the feeding end, so the flow rate adjustment would be even more critical.  I wonder how many babies ended up choking on those pieces of wool, leather,  or wood.   😦   There were also early nipples that were black rubber- evidently they tasted more like present-day car tires, but were an improvement over risking the babies  inhaling wood, leather,  or wool.  Latex was a huge deal in improving feeding safety. 

I’ve started getting a bit irritated when I see listings on eBay that call something ‘vintage from the 50s’ that I was still using with pediatric patients in 2003.  The Similac (Ross) company used the same basic 4 oz bottle for decades… take off the label, and it’s hard to tell when it’s from- but when someone puts on a nipple from a different bottle that wasn’t on the market until the 90s, and I get a bit huffy.  I don’t like the false advertising.

I keep a list in my head of bottles I would still like to get for my collection.  Dairies used to give bottles with their names on them to families with new babies , back when milk used to be delivered to the door.  I’d love to find one from one of the bigger dairies around here (Muller Pinehurst). I see them on eBay now and then, but for whatever reason, don’t have the money at the time.  I’ve sold several bottles over the years, and am now going through my collection to weed things out a bit.  I’ve decided I don’t need 6 of any one size/shape/brand.  🙂

I’ve learned how the way the bottle is labeled narrows down when it’s from.  Evenflo changed from a vertical block type capital-lettering to a more ‘relaxed’ font with only the ‘E’ being capitalized, being read horizontally sometime in the 70s, and it’s the same font/labeling they use now. The rings and discs have also changed, from black bakelite to opaque black, white, and even brown plastic, to pastel colored plastic, to a translucent white plastic. For my collection, there is no excuse for putting a translucent disc/ring on a vintage Pyrex Evenflo bottle.  They just don’t work as a collectible ‘set’. Fortunately, I can still get the same latex nipples to complete Evenflo bottles I find, though I’m not sure I don’t already have the vast majority of their glass and plastic bottles. I have one of their disposable bottles from the 70s… haven’t been all that interested in those, though a mint-in-box set would be nice !

Hospital nursery bottles started the most recent update in the early 2000s. The last overall change came in the 1950s, when they were labeled with raised glass directly on the bottle (no paper labels), with Similac, ’20’ ( the number of calories per ounce), and the measurement readings . With the most recent update,  first Enfamil went to 3oz glass bottles, and Ross/Simlac went to 2 oz plastic bottles, then Enfamil also went to 2 oz plastic.  Those were the most common brands I’d see when I was working pediatrics (with the occasional ‘float’ to the NICU, with the preemies).  Good Start also was in the mix on drugstore shelves, but the big players were (and are) Enfamil and Similac. SMA and Wyeth bottles (when seen now) are always ‘recent’ vintage- those were basically phased out by the other two sometime by the late 1980s to early 1990s.

I keep spare parts from various brands on hand if I find something I didn’t know I was looking for 😀  There is also some collectible value in having the original packaging for nipples and parts, as well as the bottles- even if empty.

I’ve recently found a complete 8-bottle set from one of the last brands I’ve been looking for for  years: Sears.  It should be ‘in the mail’ any day now, and it’s truly a great ‘find’ for me. I was looking for one bottle, and ended up with a set that includes all but the nipples (Gerber latex nipples are a suitable replacement; not Evenflo). Anyhoo, I’m really looking forward to this latest addition.  I’m sure I’ll do more research on one of the baby bottle history sites, and see others I’m interested in- but that’s half of the fun…. the ‘hunt’ !

I’m sure this seems like an odd collection to many people. But I guess it just goes to show the diversity of interests we all have.  Some folks have shelves of salt and pepper shakers, teddy bears, inkwells, paperweights, ball caps, fishing lures,  and just about anything else you can think of.  This collection of mine came about somewhat by accident.   I’d just wanted that one black ring/disc Evenflo from when I was a newborn, then the one old white Playtex with the pullover nipple that reminded me about babies I’d known when I was young.

In the end, I’ve gained some information about how babies were fed over the many decades once something other than the breast was available. Back in and before the early years of bottle feeding, maternal death in childbirth was a huge issue and the baby had to get fed somehow, so the bottle industry began and literally saved lives.  It’s given me some insight to the struggle and risks associated with newborns and childbirth 100 + years ago that we don’t think much about these days.  It’s turned into more than just a bunch of bottles on a plastic shelving unit.  It’s taken me back in history, and awakened me to social, medical, and childrearing issues I’d never thought about.    Beginning  in the late 1800s (when adequate nipples were first being made), more and more families  didn’t have to face the tragedy of losing a child  by having a safe way to feed their babies.

Edit: As of July 29, 2015, this post has had 866 ‘hits’… most read blog I’ve done.

Turning 50… and Already On Medicare For Six Years

I turned 50 years old today.  I can’t figure out where the time went !  I certainly don’t feel ‘old’, and think that 50 is the new 30, even with the physical limitations I’ve had for years.  I’ve never been one to get all depressed or stressed by ‘big’ birthdays- 21, 30, 40…. but I’m not so sure I like this one.  I started falling apart physically quite a while ago.  It makes me a bit nervous that things could slide downhill more quickly now.  😦   Mortality gets much more real.

I’ve heard (and said) that a lot of how old someone ‘really’ is depends a lot on how old they feel mentally, and how old they ‘think’.  My head still feels like I’m in my late 20s.  My body has felt older than dirt since the mid-90s, before I turned 40.  But I don’t ‘think’ old.  I’ve had to deal with chronic health issues and Medicare since my early 40s (and it takes TWO YEARS after being approved for Social Security Disability before Medicare is an option- medically disabled, with no medical care for 2 years). The list of medical issues still hasn’t changed how old I ‘think’.  I have started thinking more about how I’ll manage if my body falls ‘more’ apart.  But my mental outlook is still pretty youngish.

My dad and I went out for lunch the other day (I rarely go out to eat because of the thermostats at most restaurants being set too high for me to be able to stay conscious, even with the ice vest).  I was really excited, as we went to a favorite Swedish restaurant that I’ve been quite fond of since I was a kid.  I mentioned to the waitress that it was the first stop in my 50th birthday celebration, and she was surprised that I was going to be 50… said I looked MUCH younger (quite nice of her).  I don’t have any wrinkles, and my hair is kept short on purpose to avoid being overheated, so the gray at my temples isn’t all that noticeable (though it is definitely there !).  That felt good- at least I don’t look ‘older’.

I’ve already gone through several life-threatening events/diseases (6-hour rape and beating when I was 23, leukemia and 19 months of chemo at 46, etc, blood clots in my right lung – all three lobes and right pulmonary artery), and have chronic illnesses that have required life adjustments or are disabling: diabetes at 31, dysautonomia diagnosed at age 32, epilepsy diagnosed at age 22, degenerative joint disease at 43, chronic pain/fibromyalgia at 32, chronic headaches since I was in high school, osteoarthritis at age 43,  degenerative disc disease at 43, yadda, yadda, yadda.  I’ve been disabled since early 2004. The chemo for the leukemia has made several of the pre-cancer disorders worse.  It sometimes gets a bit scary to think that I could become more of a train wreck with ‘normal’ aging.  I’ve recently been diagnosed with neuropathy in my legs (they’re literally losing muscle mass that is now visible).  They have been getting progressively weaker for a couple of years- since/during the chemo.  If I don’t have a shopping cart at the grocery store, I can’t  get through the building on my own.  Standing in line means increasing leg pain, and feeling like they’re turning to jello in terms of strength.

I’ve been on Medicare since I was nearly 44.  Though I’d dealt with Medicare as a nurse before becoming disabled, being ON Medicare is a totally different kind of circus.

Medicare costs a LOT to have.  People get the idea that it’s a free government program.  That is wrong.  First, working people pay into Medicare every paycheck in the form of Medicare taxes. For some people, it does cost to get Medicare part A  ($441/month in 2013) if specific situations apply. Those who paid into ‘the system’ while working don’t have to pay a part A premium.  Part A pays for a large portion of hospitalization charges  and rehab in a skilled nursing facility, home health care,  hospice, and inpatient care in a religious non medical health care institution.  If someone is admitted to a  hospital for ‘observation’, that doesn’t count as a hospital ‘admission’, so the charges come out of pocket !  In either case, Medicare doesn’t cover %100 of the costs.

Then there is a part B premium (around $110 per month), and covers outpatient doctor visits, various health screenings, ambulance charges, ambulatory surgical centers, diabetes education and blood sugar testing supplies, some chiropractor services, durable medical equipment (like walkers, wheelchairs, prosthetic items), emergency department visits, flu shots, and several other services- generally at %80 coverage.  That leaves %20 to be covered by the patient.  That can add up quickly.

The part D (prescription drug plan, or PDP) can cost a varying amounts. Because of my cancer history and extensive medication list, I get the highest level of benefit plan I can- so about $80/month.  It really pays to shop around.  One of my chemo drugs for the leukemia (that had no alternate option) was about $10,000 per MONTH.  With the PDP I had at the time, my co-pay was over $450 per month.  I’m on many, many other medications including insulin which doesn’t have a generic option.  When the social worker at the oncologist’s office helped me find a different PDP company, all generics- including that $10K drug- had a $0 copay when ordered through the mail-order pharmacy. But I couldn’t change to the new plan until open enrollment that begins in October… I left the hospital in May. Fortunately, a pharmacy agreed to help me after the Lymphoma and Leukemia Society agreed to help (which they later reneged on).  That pharmacy ended up ‘eating’ the cost, as I had no way to pay for it.

Part C refers to Medicare advantage plans. They’re great if you never get sick and have no chronic health issues.  Medicare contracts with private insurance companies to deal with the paperwork.  They are often very reasonable in terms of premiums, and often include the PDPs.  I’ve been on advantage plans, and while they look great on paper, with a 6 week hospital stay for the beginning of the leukemia treatment, the copays added up in a hurry.  I’m still paying off one hospital bill, 3 1/2 years later.  The cost for that inpatient stay was over $300K.  The plan paid a LOT.  But it still left a lot of out of pocket expenses… nobody plans on having something bad happening.   I can’t emphasize enough how important it is to plan for the worst and hope for the best.  I’ve had to file bankruptcy in the past (before the leukemia)  because of medical bills.  No credit card shopping sprees, no trips to wonderful places…. ‘just’ medical bills.  Getting extra disability insurance is also a huge help when it’s needed.  I have always insured myself to the hilt when I was working, and until my last job, never needed it.  But it’s literally keeping me living on my own at this point; disability from Social Security isn’t enough to live on with medical expenses.

Then there is the Medicare supplement plan (or Medigap) to cover the costs Medicare doesn’t pay for.  The first few days of any inpatient hospitalization generally cost the patient at least $200 per day (and there may be a several thousand dollar deductible).  There are also portions of physician charges, lab/x-ray/test costs, pharmacy costs, etc.  The supplement helps pay some or all of those charges, depending on what  level of  benefits someone decides to get in a supplement.  I go all out with my supplement plan (Plan F- all companies have the same coverage for each level of supplement insurance, so it comes down to premium cost and deductibles). I have NO co-pays for any inpatient or outpatient medical situation.  That will cost $325/month this coming year (2014)…and my insulin is about $50/month (not including syringes/supplies).  The MONTHLY total to be on Medicare (for me) is over $515.  On disability income. But, I know that I’m not going to have ‘extra’ medical costs.  That’s a sort of peace of mind that really doesn’t have a price tag.

Plan as if you will someday lose your job for medical reasons (and pray you won’t !).  If the time comes (and nobody ever knows if a car wreck, disease, or other medical problem will creep up on them), you will NOT regret having paid the premiums for all of those years.  And shop around with Medicare supplements and drug plans.  It makes a huge difference as well.