Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With Breast Cancer Awareness Month at the same time, nobody will care about dysautonomia.  Men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thing that people go all pink for, and dysautonomia remains a mystery to most, if they ever hear about it at all.  Don’t get me wrong, I’m not ‘against’ cancer awareness, but who on the planet with a pulse and working brainstem isn’t aware of  breast cancer?  I’ve known and do know many women with breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years, dying from something unrelated). I understand that any cancer diagnosis is a nightmare (I’ve been there, with leukemia).  (And why is there no blue ribbon with balls on it for testicular cancer awareness? Ladies? ).   Anyway, dysautonomia is something that I’ve lived with for decades- probably longer than it was diagnosed.  It didn’t flatten me until 2004.  And most doctors are clueless.  The general population can’t even pronounce it.  Dis-auto-gnome-ee-ah.

Every morning, I wake up not knowing if I’ll be able to actually get out of bed and begin my day without my head spinning as my blood pressure tanks.  Will my peripheral vision begin to narrow, and will my hearing get muffled?  Or will I actually be able to get up and not have to lie down again?  When I get in the shower, will I get that ‘sweet spot’ in the temperature of the water where I get a nice hot shower, or will it be too hot, and once again start the process of passing out?  My heat intolerance isn’t about temperature preference or comfort, it’s about staying conscious.   My thermostat must stay around or below 64 degrees, or I start to have symptoms.  Fifty degrees is much better if I’m outside.  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go into another building where I have no control over the thermostat, I have to wear 5 pounds of cooling vest inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and this is NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming.

I ‘look OK’… aside from being overweight, and having very few eyebrows post chemo (which at this point has to be permanent), I look fine.  That’s all well and good- but it can also be very frustrating when trying to explain why I can’t do something.  I also have multiple ‘other’ medical and orthopedic problems (discs, knees, spine, epilepsy, diabetes, yadda, yadda, yadda…), so when I’m walking I look a bit gimpy, but the dysautonomia is totally invisible if I’m not lit up like a red stop light from severe flushing when the dysautonomia spells kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome.  But people really don’t ‘get’ the whole dysautonomia thing.

The autonomic nervous system controls involuntary body functions- blood pressure, heart rate, breathing, flushing, muscle/brain signals, etc.  There are many ways this can all go wrong.  Initially, I had problems with passing out, as well as my right pupil dilating.  Then my gait would get wonky, and eventually I’d keel over and sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC- just room units for at night) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone).  My housemate would hear me hit the floor from her room at the other end of the house, and find me passed out on the wood floor.  I thought I was just ‘nervous’ after a recent hospitalization for eating disorders, but she said that there was nothing  ‘nervous’ about me that she’d seen, and she really thought I had some type of medical issue.  One  night I couldn’t get up off the floor like usual, and I agreed that she could call 911.  That started the whole testing process.

I was lucky that I had a neurologist who thought I had dysautonomia. She sent me to see an electrophysiologist (EKG specialist) in San Antonio, who ended up doing a tilt table test.  My blood pressure dropped to 44/16, and heart rate dropped into the 50s (heart rate should go up, and compensate for a low BP, though a BP that low isn’t usually associated with ‘coming back’).  I was put on the first of several meds, and sent home (driving myself 60 miles after nearly passing out).

I continued to have issues with work, but eventually meds were sorted out, and I was doing well enough to get my work done. Additional disorders were ruled out (MS, myasthenia gravis, pheochromocytoma, brain tumor, stroke, etc).   The nursing home I went to work at had some very accommodating supervisors, which made a huge difference in not being panicky when I felt something coming on (the prior place did a lot of ‘threatening’, and since I was the only RN on campus at a drug/alcohol detox center on weekends, I understood the need for a conscious employee :p – but I didn’t want to stop working; being a nurse is who I AM).  I had a mattress overlay in my office at the nursing home,  to put on the floor if I needed to lie down.  I also had a fan from home, as temperature had begun to be something I had to keep ‘moderate’.  If an episode hit, I lied down; when it was over, I finished my work.

Fast forward, and I’m back in Illinois in my hometown, trying to keep things together at work, and it just started falling more and  more apart. I was hauled out by ambulance 10-12 times in a month or so at another nursing home (office job), and it was clear that I wasn’t able to keep working. I’d left a pediatric hospital job since I was terrified I’d get dizzy/lightheaded when handling very tiny babies (or larger, heavy ones), and that just wasn’t something I was willing to risk (along with some other issues with the job itself).  I had to deal with a new neurologist on my insurance plan at the hospital, who seemed clueless.  Once on disability (and Medicare two years after that), I found a neurologist who did know about dysautonomia, as well as a internal medicine doc who was quite familiar with the disorder.  With multiple medications (roughly 25 pills/day on a good day; more if not- and 3-4 shots of insulin) and total control over my thermostat, I’m able to sit up for several hours, but  I have to get up every few minutes to avoid any ‘pooling’ of blood in my legs, or I’ll enter the ‘pre-syncope zone’ when I stand up.

Now, my ‘normal’ consists of having the air conditioner on when it’s 30 degrees Fahrenheit outside.  When there is snow piled up outside, my AC unit is the only one with space around it where the snow has melted from the heat generated by the AC.  I leave home about 2-3 times a month– monthly grocery shopping, a doctor’s appointment here and there, and maybe a short trip to the grocery store about half-way between disability checks, for milk and/or bread.  Everything has to be ‘paced’.  If I do laundry, I can’t unload the dishwasher.  If I take trash to the dumpster, I can’t vacuum in the same day.  And I struggle to maintain any muscle tone, to avoid getting worse… but the chemo I had to have to survive the leukemia has caused deterioration.  I guess there are tradeoffs with everything.  Nothing is taken for granted.

Being on Medicare has been a horrific eye-opener.  I used to do the assessments that determined reimbursement for Medicare patients at the nursing home I worked at in Texas.  I was superficially familiar with Medicare.  Then I was on it.  Medicare is expensive.  There is the part B (doctors’ office and equipment/supply part) monthly premium (about $110).  There is the supplement plan since Medicare doesn’t cover huge portions of hospitalizations and tests (so add another $325 per month).  The part D (prescription plan) is about $75 per month, and between over the counter medications I MUST have, as well as paying out of pocket for insulin, that adds about $125/month (I’ll get into insulin in another post).  SO if all goes well, $635/month goes out the door for medical expenses.   That pretty much ensures no out of pocket expenses for doctor’s office visits, tests, and (knock on wood) hospital costs.  When I was in for 6 weeks for leukemia in 2010, the bill was $300K…. nearly 1/3 of a million dollars.  I will make my last payment on what they didn’t write off this month.  Four and a  half years later.  That’s not included in the $635.

Dysautonomia can be mild or fatal.  With the chemo causing deterioration, and knowing what I was like beforehand, I don’t think I have the fatal type (Johnny Cash did).  I have the invisible, life-altering, disabling, survivable kind.  Some symptoms may be worse than others on different days.  I can have one cheek very hot, and flushed to almost a blue-red, while the other is cool and has normal coloring.  I can have blue fingernails, not from lack of oxygen, but because of constricted blood flow.   My heart rate has dropped into the 30’s for no good reason (that bought me 5 days on a cardiac floor with nurses who were very nervous about the epilepsy- padding the side rails and putting a bed alarm on my mattress that went off if I got up to go to the bathroom- and GADS, they panicked when I got up to walk in the halls for some type of activity one night…. how did they think I lived at home?  Alarmed, padded bed?).  Sometimes one arm is flushed and hot, and the other cool and pale.  I’ve looked ‘dead’ per one former supervisor, with breathing so shallow and extreme paleness, it scared her many times.  I live alone, so have had to learn what sets me off… sometimes it’s as simple as a ‘scare’ on a TV show that wasn’t expected.  But heat and pain are my main triggers.  I’m in constant, chronic pain- that’s harder to control than the temperature.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing. At all.   Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern.  There is pure autonomic failure – where nothing works right most of the time.  Shy-Drager syndrome is one of those total failure syndromes, and even saliva production is involved.  Dysautonomia isn’t one thing.  It’s a combination of symptoms that are generated by an abnormality of the autonomic nervous system.  Some are relatively minor, and others require feeding tubes, and other external measures to make it survivable.  More people have dysautonomia than are diagnosed, per research estimates. It can affect any age group or gender, though females tend to be diagnosed more often.  It can be seen as a conversion disorder or other emotionally based problem, which causes improper diagnoses, and completely inappropriate medications.  I encourage anyone who finds their symptoms listed in the informational links to talk to their doctor.  There isn’t a cure, but it’s generally not fatal, and can be treated.  Getting used to the new normal is the hardest part, as is not being understood.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

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Mammograms and Menopause…

Boy howdy, did I have a good time today.  Should probably be illegal, and yet it’s required by the conscientious medical provider I have, to the point of getting actual mail, not only e-mail reminders.  I think the last time I got real mail from my doc, it was an order referring me to an oncologist because my entire blood count was next to nothing, beginning the odyssey of leukemia survival.  So, they scare the crap out of me to let me know it was time for the annual (or so they’d prefer) boob compressing.  It’s an exam undoubtedly devised by a man who never thought that there could come a time when a very ornery, hormonal, fed-up menopausal woman somewhere in the medical invention universe would come up with a testicle crushing machine to ID nut cancer.  If my personal physician wasn’t female, I’d probably find some internet conspiracy theories to make myself feel better about blowing off said mammogram.  But she is, so I went.

The first time I had a mammogram was about eight or nine years ago. I’d heard horrible things about the girls  being smashed so flat, they needed spatulas to scrape them off of the table thingie when the exam was over.   It had been compared to the labor pains of the woman’s northern hemisphere.  I went in terrified of having my boobs stretched and pressed so harshly that I’d need to roll them up in those old pink foam rollers to get them to stay in my bra afterwards.  But I went.  I followed all instructions to a tee, including the ‘no deodorant’ rule.  My first thought was that the technician would be wearing a gas mask, but not the case.  And the exam began…

Eh.  Not a big deal.  Yeah, so I wouldn’t want to be holed up in those positions for any longer, but it wasn’t horrific.  I’d survived, and the girls weren’t bruised or misshapen. Still faced different directions. Back to baseline.    There was, however, a problem.  I tend to be somewhat intolerant of nonporous surfaces, and I sweat when in contact with them.  I’m also very heat intolerant, so I sweat just thinking about being slightly warmish.  My boobs also inherited this condition.  The first one let go of the table without much fanfare.  Peeled ‘er off, and tucked ‘er back in the backwards ugly-gown.  The second one?  Nope.  Did. Not. Want. To. Go. Home.  She was flattened down, and gripping with a suction I didn’t know was possible from a boob.  She put some octopi to shame that day.  I had horrific images flashing in my head about finally getting her loose, only to have the recoil  slap up against my forehead, refusing to move.  I’d have to drive home with a boob over my left eye, hoping like crazy that I didn’t get pulled over for ANY reason.   The sweat would be creating humidity in the car that would make driving hazardous. Ferns would grow.  Finally, I got it loose, and hunched over as I ran into the dressing room, hoping I’d been able to dislodge it without the tech getting any glimpse of the power struggle going on from a stubborn ‘limp’ tit on her table.  I wasn’t letting that boob get any ‘lift’ from air as I moved, lest she go airborne, and become too unruly to shove back into my bra.  Scary having something seemingly operating independently of the rest of me 😮

I had another one the winter after I finished chemo for leukemia (APL). Once I got the OK, I had every crevice and loose bit of tissue  tested for any and all types of weirdness.  I wanted to know I was starting with a clean slate.  And so I did- and all came out OK.

Then, came today.  I had a routine oncology appointment today (is that an oxymoron?  ‘Routine’ and ‘oncology’ lumped together?) , so I scheduled the mammogram for after that.  That meant no deodorant for the oncology appointment (but I did mist the back of my shirt  with a bit of body spray).  Menopause has done some odd things with body odors.  I hadn’t anticipated that when it all started, but have come to understand that I smell really, really bad if I’m not layered up with whatever non-toxic odor neutralizers I can find.  I’ve been tempted to stuff dryer sheets in my bra.  As it is, when I get a whiff of my pits- which are connected to a sedentary body, creating no extra odor due to healthy activity- I  dash off (well, I limp, so ‘dashing’ probably isn’t accurate) to do a wipe down with witch hazel, as well as a moderate scrub with some old cheap washcloths with some texture to them.  A layer of non-toxic baby powder is also a good thing.  This is all when I’m at home, alone, with nobody to witness the tragedy of menopausal pits.

Anyway, I got through the oncology appointment and went to the mammogram appointment, and got in early, since it seems Tuesdays in Cancerville are fairly sedate, and I overestimated the time between appointments.  But, the boob squishing department was at a lull, and I got right in over there. Did I mention that the handicapped parking is down about 16 steps?  Anyway,  I was escorted to the changing room,  given the ugly-gown to change into, and then made my way to the exam room, where the tech had some questions.  Thus far, the pit stench wasn’t horrible.  Not my finest, but I didn’t think I’d kill anyone.  On to the exam.

As soon as my right (the first one done) arm was raised, the green mist appeared.  I was suddenly reminded of roadkill along the backroads of Texas in July, about two days after impact.  Buzzards were circling, and flies could be seen in cloud form.   I smelled like decomposition 😮    Oy.  Those poor techs.  Menopause was making me smell like a dead opossum. Or skunk. With a witness.   I was horrified.  I laughed it off, and the tech just said she didn’t smell anything.  That must be part of the job application- must pass one of two of the following:  outstanding liar or absolutely no sense of smell.  The woman today seemed trustworthy enough, so my guess is that the part of her brain that interprets smell was blown out at close range in a terrible crossbow accident that left her otherwise unharmed.

I got out of there, and made it home so I could get the Brillo pads out after my pits.  I got my appointment clothes off (still emitting a slight green fog), and got my natural deodorant.  I thought about applying it with a spackling knife, but decided that might be a little too looney.  I’m not the queen of persnickety hygiene, but I try not to be a community health hazard.  At home, it’s just me and the dog most of the time (and she seems quite happy, no matter how much I’m mortified by the changes of menopause).   I like it that way, with few exceptions.   I just hope that when this whole process of ovarian retirement is over, I go back to being just a little whiffy when it’s hot out.  NOT being so toxic that I need to wear hazmat signs when I leave home.

My condolences to the mammo-tech.

Former Co-Workers When I Worked Pediatrics

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Vintage Baby Bottle Collection

Still not completely set up- but getting there !

Still not completely set up- but getting there !

 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.

Evenflo bottles- from the early Pyrex Evenflo bottles to the vintage translucent pastel plastic bottles.

Evenflo bottles- from the early Pyrex Evenflo bottles to the vintage translucent pastel plastic bottles.

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.

DSCN1432

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 !

Late  1800s bottles with great nipples, old 40s-50s 'Six Pack' bottles  - Curity, Hygeia, and others

Late 1800s bottles with great nipples, old 40s-50s ‘Six Pack’ bottles – Curity, Hygeia, and others

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. 

Various hospital newborn nursery and pediatric floor bottles- from the 50s - early 2000s.

Various hospital newborn nursery and pediatric floor bottles- from the 50s – early 2000s; also Storck (Rexall), and other drugstore type bottles for use in homes.

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.

What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  These are some of my ‘just don’t say it’ things:

1.  “You look OK.”… to me, that means “there must not be anything wrong with her- she’s just a wimp and making a big deal out of nothing”.  You spend a day in my body, and get back to me.  Diabetes, seizures, neuropathy, chronic pain, migraines, degenerative joint and disc disease, and a multitude of other disorders have no outward symptoms that scream out their identity.  There is a fine line between “You look OK.” and “You look good”.  When “You look good” is said following a long fight with an illness or its treatments, and someone is ‘coming back’ to their ‘usual’ self, I never found that offensive.  It’s a totally different situation.  But “You look OK” = “buck up and get with the program, you sloth.”   Trust me.  I’ve tried the best I can, and managed to get 8 years more to work with the initial medications (once the right ones were figured out). Going on disability was NOT my idea.  My employer at the time told me they couldn’t have me around (go figure, I was passing out all the time).

2. “Your doctors sound like idiots.” (opinion usually based on the online ‘research’ that is mostly from sites that are trying to sell a product– and have an 800 number at the bottom of the page, and/or ‘proven’ by someone with a plumbing or agriculture background).   Many times, this is ‘pushing’ some sort of Eastern or alternative medicine instead of the treatments that have been researched and gone through trials, with proven success rates that are better than not having that particular medication or treatment for that specific problem.  I have no issue with alternative medications, and use homeopathic headache medication as well as herbs and supplements for headache prevention/ minimization … but I have run those past my doctors before taking them. I also use Western medications for the same problem.  While I was on chemo, I took NOTHING that my oncologist didn’t approve.  There were very specific things I couldn’t have because of the type of chemo I was on.  There was  a massage/aromatherapy person who came by every day I was in the hospital, so some alternative things were offered.  I’ve been offered various products/ideas to replace medications by well-meaning friends.  Here’s the thing- it’s my body.  I trust who I trust, and it’s not someone online I’ve never met.  It’s not someone who has never seen me or my test results.  It’s not someone who has no interest in me if I don’t buy their products. When I have decided to switch doctors, it was MY decision based on how I felt about the care I was getting.  And, I never trust anybody who has credit card acceptance comments and images at the bottom of their ‘professional’ page.

I must admit, I have been annoyed by doctors I’ve heard about and gone off the rails with my responses- but once discussing the situation with the person- and I more fully understood what was going on, all was well- and bottom line, I respected their gut feeling about what was going on.  🙂 But, nobody needs to hear that their doctors are idiots… they’re depending on those doctors to be sure they’re still going to have a normal lifespan.

3.  “You should/shouldn’t eat X, Y, or Z.”  During chemo, it could have been lethal to eat fresh fruits and vegetables that someone else didn’t peel, because of the microbes that can still be on them even after washing. Because of the immune system ‘attacks’ from chemo (and in the case of the leukemia I had, the cancer itself long before the chemo kicked in), there are times when an otherwise harmless ‘bug’ could cause a fatal infection. Produce is covered in ‘normal’ bacteria, fungi, spores, and viruses- a normal immune system handles them with no problem (they can’t all be washed off).   And when my absolute neutrophil count (ANC) was below a specific number, I couldn’t have any fresh unpeeled produce around (and wasn’t given permission to peel them myself even with a mask and gloves– the risk was just too great).  I’d already had a couple of nasty infections from otherwise puny things that caused delays in chemo and/or the need for extremely potent IV antibiotics for 5 straight weeks, or antivirals for 3 weeks (BAD ear/neck infection,  and shingles during the first year).  Normally, fresh produce is felt to help prevent certain cancers… but with chemo and the effects on the immune system, it is critical to not violate the food rules !  It’s all temporary.  Better to go with what is likely not to cause more problems !  When it’s not potentially lethal, then of course- fresh foods are the way to go 🙂  There was also a very strict ‘don’t eat’ on things with a lot of Vitamin A, since one of my primary chemo medications (ATRA) was essentially a form of Vitamin A in mega form.  Vitamin A is fat soluble, and can become toxic in the body since it builds up (so can E, D, and K).   I had very specific instructions about not eating Vitamin A ‘heavy’ foods (carrots were a particular ‘loss’).

4. “Oh, disability must be just like an early retirement!”  Seriously?  People think this is some sort of ‘perk’ ?  My life was taken from me in terms of everything I knew to be my normal life.  I still grieve the loss of being a  working RN.  I’m having to make 2/3 of my income ‘work’.  I can’t leave home without medical equipment.  I have 32 pills to take on a ‘good day’ when I don’t have to take anything for an ‘as needed’ situation.  I’ve had to deal with Medicaid (a joke- they don’t help much at all, and it’s humiliating to need it), Medicare (very expensive to be on), the Part D prescription plan (which limits my access to the best insulins due to cost), the legal system, with bankruptcy prior to Medicare (extremely shameful to have to do that), etc.  It’s been hell.  Yes, I have many things to be thankful for- but this is no picnic.  I’d much rather be doing 40 hours a week and being useful. Now, it hurts to make a sandwich or empty the dishwasher.

5.  “Well, when you finally feel like it, we can ______.”  Don’t hold your breath, sister !   “Chronic” and “disability” don’t mean this will run its course, and I’ll be fine.  How I wish !   “Degenerative” means I’m going to decline.  I’m the one who should be having more trouble accepting that- why is it that others just can’t grasp the concept that some things can’t be fixed?   Don’t make it sound like it’s somehow up to me for this to all go away.  Don’t make it sound like I’m just not trying hard enough. Don’t make it feel like this is my CHOICE !  When someone says ‘finally’ it implies that there’s something voluntary about all of this.  If there were, I’d be in a way different place, working, and living a ‘normal’ life.

I’m doing the best I can.  If I were physically able to do more than I can, I’d be doing it.  I feel fortunate to be able to take out the trash and not need 2 hours to recover.  I’m always glad when I get home from the grocery store, and didn’t have to stop unloading the car because I felt like I was going to pass out.   I’m adjusting the best way I know how, which is to try and be thankful for what I have left that I enjoy, and am glad that no matter what happens to me, I still have God.  Some people don’t understand that.  For me, He’s a lifeline. ❤