Ramblings of 2015

Here it is… New Year’s Eve.  Getting ready for 2016.   It’s been a bumpy 2015, though I realize I still have a lot to be thankful for.  A lot has happened.  A few things are still being diagnosed.    There have been family changes.   And like always, I seem to manage… but it’s getting harder to do it on my own.   Fortunately, I believe that God has it all figured out. I don’t have to understand it all…

Last year about this time, I did a home sleep study, that showed that I stop breathing about every 3.5 minutes….so basically I don’t sleep enough for it to be useful.  I hadn’t been getting to the REM stage, so restorative sleep was kaput.  I went in to get ‘fitted’ for a CPAP (continuous positive air pressure) machine, and it has really helped.  The morning headaches have pretty much disappeared (that alone was worth the price of admission).  I dream more- weird dreams, but not bad dreams, and I’m getting to the stage of sleep where I can dream.  Add a pulmonologist/sleep specialist to the list of doctors I see- but this guy is A-OK.  The increase in the quality of my sleep has perked me up, so I want to do more.  I can’t always physically get it done, but it’s nice not to feel like I’m a total slug.

Then the summer came around, and it seemed like my body decided to take a flying leap towards deterioration.  From the head down:  scalp psoriasis got much worse (no more dark colored shirts for these shoulders), swallowing got bad, GERD got worse, back pain intensified, blood sugars got nutty again,  legs started having intense burning pain (as in being set on fire… not sunburn), right leg  atrophy got worse (muscle shrinking), legs started getting weak to the point of feeling like they would give out, blood pressure and heart rate started to do their dysautonomia/POTS thing- again, and something I’m forgetting.  Oh, yeah…. the kidney function tests got weird after my blood pressure got really low.

The psoriasis is an autoimmune thing (not to be confused with autonomic… they are very different).  I keep my head shaved for the autonomic disorder (very heat intolerant, and what is more heat retaining than a head full of hair that is about as thick as a bear rug?), but now the psoriasis ointments benefit from not having a ton of hair to muck through.  SO, I’m usually mostly bald, and flaky.  Not like normal dandruff flakes (those are there with the psoriasis as well), but like sheets of skin the size of my little fingernail peeling off.  Lovely.  And, yet that is more of an annoyance than life-altering.

The swallowing is still being evaluated.  So far, it looks like achalasia (esophageal spasms that don’t allow for food to pass into the stomach normally; feels like a golfball is stuck in my pipes).  They also found a “clinically significant lesion” at the junction of my stomach and lower esophageal sphincter (end of the esophagus), which will be further checked in a couple of weeks when I have the third endoscopy in five months, but with an ultrasound and biopsy done this time.  I don’t like the word biopsy, and don’t like that it took about a MONTH to get the biopsy scheduled. To me, that’s not OK.    In the meantime, it hurts, and food choices are more limited, or I have to pull things out of my throat with my fingers. The safe foods are  more carbohydrate ‘intense’, which hasn’t done much for my blood sugars.  SO, add a gastroenterologist, and return visits to my endocrinologist.

The reflux was also really bad, but changing some of what I eat, as well as  a hefty dose of a proton pump inhibitor (GERD medicine) has helped somewhat.   I can no longer take ibuprofen, or any meds in that category because of chronic gastritis (inflammation of the lining of my stomach), so that is a problem with pain management with other stuff.

I’ve got degenerative disc disease, so it’s not all that unexpected that lower back pain gets worse over time, and I knew I was going to have to go back to my pain doc. I needed a current MRI so he knew what was going on.  That MRI was horrible.  I’ve had a lot of MRIs, and usually it’s no big deal.  This one was for both my lower back and neck (it’s in worse shape with messed up discs and bone spurs), with and without contrast, so it took a long time.  I bailed after the “without” part of the test. I got both the neck and lower back done, but  I couldn’t take  being on my back any longer, not able to move.   Anyway, I went back to the pain doc, where I got an injection in my back (have had a lot of those; they aren’t that helpful, but it does help a little for a few hours).   The next step with that whole mess is to have a spinal cord implant thingie that blocks how my brain perceives pain.  It fixes nothing except perception.  I’m going to have a pelvic CT just to make sure something else isn’t going on before I have something implanted in my back/spine.  In the meantime, it’s pain meds (that I don’t like).  They do help, but I am very careful about making sure I don’t get too used to taking them.  I’m not concerned about addiction.  I get no ‘perks’ other than pain relief.  I use them as directed.  But physical tolerance is something that happens with several types of meds even when used as directed.  It is not the same as addiction (no psychological component ), but can cause symptoms if the meds are suddenly stopped.  So I’m careful. I don’t use them every day.   I follow the dose instructions.  I don’t mess with them.

During a routine follow up appointment with my oncologist, my lab work came back funky for my kidney functions.  My blood pressure had been low for a while, and evidently low enough to mess up blood flow through my kidneys.  After a few medication adjustments, my blood pressure came up and my BUN and creatinine went back to normal, along with my glomerular filtration rate (which had put me in the stage 3 level of chronic kidney disease).  One thing that has always spooked me about being diabetic is kidney failure.  I’m not sure I’d agree to dialysis if it involved the sort that requires dialysis three times a week no matter what the weather, for 3-5 hours at a whack.  That’s not a life in my eyes.   Just my opinion, though I’m sure if it came down to it, I’d do dialysis for  a while, and make any other decisions along the way.

My right thigh had started to shrink (atrophy) a couple of years ago, and a muscle study (EMG) that involves pins stuck into the muscle with a bit of an electrical jolt thrown in showed that I have neuropathy.   Between being diabetic and a LOT of chemotherapy that often gives people neuropathy that don’t already have it, I was like a neuropathy magnet… and it was getting worse.  During the summer, I started having sensory issues.   As in it felt like my right thigh was literally on fire.  Ignited with an accelerant type of fire, not a sunburn.  I’ve got a pretty decent pain threshold (as in joking with nurses during bone marrow biopsies), but this pain would not only wake me up at night, but briefly immobilize me while I tried to make sense of the intense fire sensation, and no fire anywhere near me.  If/when I got myself rolled over ON to the burning leg, it would start to subside.  The same area was numb to touch all the time… Back to the neurologist for another EMG.  The sensory peripheral neuropathy was now said to be progressive (I think most of them are).    Then back to my regular doctor to discuss medication options that wouldn’t mess up the rest of the pharmacy I take.  And, to have her check my muscle strength.  The right leg isn’t so good, and if I’m standing for very long, I feel like it’s going to give out…. so I now have a wheelchair for more than walking around in my apartment, or to the dumpster- which I still do to keep using my legs as much as I can.  The other leg decided to join in the burning pain and numbness, so it’s a two-fer now.   The wheelchair has been a huge help  in getting around at church (I joined a women’s Bible study this fall- the first socialization in years).  I hope to go to the mall soon.  😀 DSCN4140

With my blood pressure and heart rate starting to be weird (kind of like it was in the beginning of the whole dysautonomia business), I was getting more symptomatic.  One night on the way to my dad’s girlfriend’s house for dinner, I started feeling like I was getting a bit foggy-headed, and my heart rate was going up.  Time to head for home.  Don’t pass go. Don’t collect $200.   My internal med doc (regular doc) had already adjusted my long-acting blood pressure med a couple of times,  (paradoxically helps keep my blood pressure UP, unless something isn’t working even more weirdly) , so she sent me off to a cardiologist – more specifically, an electrophysiologist who deals with heart rhythm problems, and dysautonomia.  The good news was that my EKG in the office was OK (which was expected).  My echocardiogram (ultrasound of heart) was OK.  Not perfect, but not bad for my age…. my AGE….. arghhh, I’m getting older on top of all of this  :p .  Thankfully, she didn’t want me to hook up to one of the 3-4 week King of Hearts monitors for extended testing. Those are annoying.  I’ve done them twice.  I end up with episodic tachycardia (fast heart rate), PVCs (not good if they keep going but a couple of them aren’t that big of a deal), and ‘burns’ from the electrode adhesive.   I’ll go see her again in a couple of months as a follow-up.

Sometime during all of this, I went back to my endocrinologist after my A1C (average blood sugar over about a 3 month period) went up more than I was OK with.  I hadn’t seen her in about two years…. I’m SO tired of seeing doctors.  But she got me some new fangled insulin samples, as well as the ‘good’ short acting stuff and told me what to take.  I found out that my Medicare part D (drug plan) would cover BOTH of them at the Tier 2 copays !!  That was huge !  I actually cried with joy at being able to get the ‘good stuff’, and not have to take the “disco insulin” anymore (it was popular in the 70s) .  God bless Walmart for making disco insulin available for $25 per vial ( good insulin can be 10x that price).  But I was going to be able to get the good stuff, AND the endocrinologist got me enough samples to get me from the beginning of October THROUGH the end of the year !  😮

SO, just from medical junk going on, I’ve seen a pulmonoligst/sleep specialist, internal med doc, oncologist, cardiologist, neurologist, endocrinologist, gastroenterologist, and board certified pain management doc.   Good to have all of those folks to help.

My 100 year old grandmother died on Halloween. There was a lot of really snotty stuff that went on with the living siblings (aunt and uncle) ‘passing along’ information to those of us grandkids whose sibling parent was already deceased.  From my standpoint, there is no more family besides my six cousins (in one family).   I am in contact with my mom’s deceased brother’s kids, and that’s it.  Toxic people can be prayed for from a distance.  I will always wish them well.  I will not be part of the games by pretending that it was all OK.  I couldn’t go to the funeral (see above), and the six cousins who also have a deceased ‘sibling parent’ weren’t even seated with the rest of the family.… ’nuff said.   Who knows what my other cousins have been told about how we were left in the dust with being informed about changes in grandma’s condition (admission to hospice) AFTER they’d all had a chance to go visit grandma from various parts of the country (not all did go, but they KNEW what was going on).  And it really doesn’t matter anymore.  It will be very clear in the end when we all meet our Maker.  The aunt and uncle (living siblings of my grandma’s) have to live with themselves.  I don’t.

I’m so thankful for my dad.  He’s my earthly ‘rock’.   He’s 83 years old, and going strong.  We talk every day, and see each other at least weekly.   It’s a gift to still have him in my life.    We joke with each other all the time, which is great- but I’m also so grateful for him.

Shelby turned three years old on Christmas Eve.  She’s still a ‘puppy’ at heart, and my baby.   She had to have a toe amputated this summer- it was benign (there was a swelling and firmness to it that was suspicious)… and she’s back to running around all over the place.   She really is a wonderful companion.  She’s nuts… but that’s fine ❤ DSCN4026

Joining a women’s Bible study was great and I look forward to the new semester starting next week.  It’s been a LONG time since I’ve had much continual socialization opportunities.  I have to take my cooling vest, wheelchair, and Bible with the  specific study guides, but it is such a blessing to feel like I’m a bit of a part of something.  It’s at the church where I grew up, so there’s a sense of familiarity, and I’ve met some really nice new people.  I also ran into the mom of one of the tiny babies I looked after in the church nursery (who was my favorite in the 0-7 month nursery- she was such a bitty little thing, and so cute; I claimed her as mine for an  hour each Sunday 😉 ).  It was great to see someone from the past.

A lot has gone on… it sounds like most of it was ‘bad’, but I don’t feel that way.  I’m getting some help with making life a bit easier (wheelchair, better insulin), as well as less isolating (Bible study).  That trumps the bad stuff to the moon and back.   I’ve accepted that I need help with some things, and have a couple of friends who are willing to help. My dad is healthy and a lot of fun.   I have a great relationship with my birth mom, as well as her extended family.   I can still live in my own apartment, and have my goofy dog.  Through Facebook, I can remain in contact with family,  friends from Texas, as well as those I’ve known from before then.   No matter what is going on, I believe that God has it all under control for His good.   I don’t have to understand it, but I do find comfort in His ability to get me through whatever goes on.  I always seem to land on my feet (more or less), and I believe that my faith is what gets me through things.   God is good.

Bring it on, 2016 !  😉

 

 

Pain Management for the Non-addicted

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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.  My guess is that 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?  They never seem to mention that %5 or so cases of breast cancer are IN men. That question used to drive men mad when I did patient intake admission assessments when I was working. I had to explain I wasn’t being snarky- it’s something men need to be aware of if they feel anything different ‘there’.

I’m an RN (disabled since 2004, but have kept up with my license requirements, and use my background to keep myself alive). I’ve known, and do know, many women who had  breast cancer (including my mom, who died in 2003 after surviving multiple cancer sites for 17 years starting with breast cancer, and dying from something unrelated other than the dementia caused by brain radiation that made her less than ‘worth helping’ when she got acutely ill in AZ.  Dad flew with her home, emergently.  We went straight to the hospital, and she was dead in 2 days). I understand that any cancer diagnosis is a nightmare (I’ve been there, with APL 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 much longer than it was diagnosed.  It didn’t flatten me for good 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 and heart rate tanks (with neurocardiogenic syncope) or pulse going higher as I’m vertical, if the more POTS symptoms act up. (Not everyone has just one set of dysautonomia symptoms or diagnosis).  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 can take a warm 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 home thermostat must stay around or below 65-66 degrees year round (including when it’s 20 degrees outside; I had my bedroom AC unit- different from the central AC in the house- on 64 degrees when the wind chill outside was MINUS 20 degrees F), or I start to have symptoms.  Fifty degrees is OK if I’m outside for the rare times I can be outside (the sun adds heat regardless of air temp).  I wear a light snap-front sweatshirt, left open,  when it’s in the 40s.  If I leave home to go to an appointment where I have no control over the thermostat, I have to wear a cooling vest with 5 pounds of freezer pack inserts.  To stay conscious.  I’ll start to ‘burn up’ for no good reason (and these are NOT hot flashes- I’ve had those, and they are totally different).  Or I’ll get so tired, that doing anything is overwhelming and a huge safety risk if symptoms continue to get worse.  I’ve keeled over and whacked my head, or as has also happened, partially torn my ACL and medial meniscus.

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, shoulders, hips, spine, epilepsy, diabetes, yadda, yadda, yadda… most body systems are impacted by something), so when I’m walking I look a bit gimpy, but the dysautonomia is  invisible if I’m not lit up like a red stop light from severe flushing when the episodes kick in.  My thigh muscles have atrophied (probably from diabetes and chemo), which looks weird, and makes walking quite tiresome. My arms are also atrophying.  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, unconscious,  and then sleep hard for hours.  Temperature dysregulation hadn’t shown up yet.  I was in Texas when this all started with the passing out and other ‘not good for work’ stuff, and I did fairly well at first.  When it was first a ‘thing’, I was living in a house (with no central AC…in Texas. In July) with a coworker to share expenses (perfect situation; we had opposite schedules, so it was basically like living alone. My room was in the front of the house, so shaded by trees outside. There were room AC units in the bedrooms).  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 physical medical issue.  One  night I couldn’t get up off the floor like usual (about 10 minutes after coming to), and I agreed that she could call 911.  That started the whole testing process. I’d keeled over about 10-12 times in three weeks. I finally gave in.

I was lucky that I had a neurologist in 1996 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 had long stretches of interstate with little traffic where I was going, and a plan if I felt bad while in the car).

I continued to have issues at work, but eventually meds were sorted out (gabapentin, a benzodiazepine, and a beta blocker), 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 next 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 RN – but I didn’t want to stop working; being a nurse is who I AM- or was).  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 was back  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 12+ times in a month or so at another nursing home (office RN assessment job), and it was clear that I wasn’t able to keep working. I don’t remember any of the trips to the hospital, just the nastiness of being seen as a ‘frequent flyer’ by the nurses and doctors who’d never heard of dysautonomia, and made cruel assumptions.   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  neurologist on my insurance plan at the hospital, who seemed clueless- she just kept increasing the gabapentin until it was 3600mg/day, and that did nothing but make the seizures worse since they are sleep stage-related, and I was nearly always getting close to the early stages of sleep, that were confirmed on video-EEG over a week in a teaching hospital by another electrophysiologist.  Once on disability (and no Medicare for two years after being ‘approved’ for disability for medical reasons, and it takes 2 years to get Medicare- so that made no sense), 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 4-5 shots of insulin) and total control over my thermostat, (edited for 2020) I’m able to watch TV in bed with my legs up, and get to the end of my driveway to get the mail, or take out the trash (I live alone).

Now, my ‘normal’ consists of having the air conditioner on when it’s below freezing  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 only for doctor’s appointments and if the dog has to go to the vet or groomers.  Everything has to be ‘paced’. I have a self-imposed driving distance limit, that my neurologist is comfortable with (I know if I can’t drive, and don’t put others or myself at risk).  If I do laundry, I can’t unload the dishwasher.  If I take trash to the curb, 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 professionally 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 $310 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 huge copays for insulin until I get to the ‘catastrophic’ phase of part D, that adds about $350-400 a month.  SO if all goes well, nearly $1000/month goes out the door for medical expenses. I chose a supplement 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 made  payments on what they didn’t write off for 4 1/2 years. That was in addition to the other medical expenses. Advantage plans are only good for people who don’t get sick. When I signed up for one, I never imagined leukemia would come into the picture.

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 that is inconsistent, and not something I have much control over, other than the thermostat and pacing all activities.  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? I worked as an RN on a neuro floor, and we were careful, but not crazy pants paranoid… seizure patients all have different symptoms and THEY are the ones who are experts in how epilepsy shows up in THEM. It’s rarely the landed-fish flopping around that is on TV. Many, many epileptics work and have pretty normal lives, being compliant with medications and doctor appointments).  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. A horrifically nasty post on social media can trigger a flight or flight response that gets things going (so I am on social media at my own risk, and anticipate the jerks chiming in about things they know nothing about-or who can’t tolerate that someone has an opinion that differs from theirs).  But heat and pain are my main triggers.  I’ve been in constant, chronic pain since 1995- that’s harder to control than the temperature. I’ve only recently given in to ongoing pain meds with a pain doc I’ve seen on and off since around 2008. The epidural injections help some, depending on what gets ‘shot’, but they don’t last long.  I’ve tried medical cannabis and CBD- didn’t like the THC at all. The CBD is good if I have to sleep, and/or need something to tire me out enough to quit trying to do too much.  It’s been 25 years of not remembering being pain free (which isn’t a reasonable expectation at this point, but controlling pain to get to a level that is tolerable IS a reasonable expectation). I need pain meds to function enough to keep up my house (which I have to pace).  I’d rather be here, alone than in some assisted dependence situation with people I don’t want to know, and time schedules I don’t want to have shoved down my throat.  I’m independent. I may be in pain to the point of being in bed after a day of 2 loads of laundry- but I’m in MY house, with MY dog, doing MY ‘chores’.

Some people have POTS (postural orthostatic tachycardic syndrome), which causes symptoms if someone is standing for varying lengths of time- or sitting up for longer than they can tolerate. Their heart rate goes out of control simply by being vertical. Lots of folks with that need wheelchairs for safety at some point, and some might ‘just’ need a walker with a seat for safety if they need to sit down in a hurry.  There is neurocardiogenic syncope- which is actually a simple faint, until it’s a pattern and keeps happening. It becomes something that is no big surprise, based on triggers (different for everyone).  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 (I’ve learned to put my own in since I’d done it many, many times on patients when I was working, and use it for fluids since doctors here don’t believe in intermittent IV fluids) and other external measures to make it a little more tolerable.  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. I’ve had symptoms since I was a teenager, but was blown off until it couldn’t be blown off- an unconscious body on the floor isn’t generally “nothing”. I recently read about the connection to concussions (I’ve had at least 5-6).   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.  And isolation takes a while to adjust to. When the pandemic (2020 edit) caused “stay at home” orders, it was literally how things have been for the last 16 years for me, and countless others who know to be thankful for the days when nothing goes wrong.

See the following for more information:

www.ndrf.org 

www.dysautonomiainternational.org

www.dinet.org

 

 

 

 

Turning 50… and Already On Medicare For Six Years

I turned 50 years old.  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.  Update: I’m housebound except for MD appointments. Permanent “stay at home”.

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- in changes yearly) 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 ANY 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 because of using a term to mean the same type of leukemia  APL is AML-subtype M-3…. they wouldn’t take APL once they thought about it).  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 before Medicare.  No credit card shopping sprees, no trips to wonderful places…. ‘just’ medical bills.  

Then there is the Medicare supplement plan (or Medigap) to cover the costs Medicare doesn’t pay for- about %20 of the total ‘approved expenses’ – and they decide what is approved, not your doctor (it helps even the playing field).  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.

There is NO DENTAL insurance- so if you want that, it’s not under Medicare, and must be purchased on your own.

Plan as if you will someday lose your job for medical reasons (and pray you won’t !). ALWAYS get disability insurance at work if you can afford it. 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. If you don’t have disability insurance and something happens, it’s the difference between getting by and not. You can’t get it once you’re disabled.  You likely won’t qualify for any type of extra help, either. Medicaid takes a lot of jumping through hoops- and most people won’t qualify.  Example- to get Medicaid help, I’d have to spend $2000 per MONTH on medical bills. That would make me homeless. And you can’t get benefits without an address- it’s all rigged so that the VAST majority won’t ever qualify for any help. But we can bail out companies to the tune of billions for things they did to screw up their own companies.  Disability is also hard to qualify for- but true cases generally get through (often with a lawyer- don’t go with ones that require payment up front).  I had over 1000 pages of documentation, and passed on the first application.  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 for disability insurance.  Or get a good tent, sleeping bag, and watch a bunch of “Alone” episodes.

Shop around with *ALL*  Medicare supplements and drug plans.  It makes a huge difference.

Chronic Pain in Its Various Forms…and Dysautonomia

While I’ve lost count of the exact number of days, this current ‘spell’ of severe headaches has gone on for at least 4-5 weeks, with maybe five or six days of no headaches at all in any given day.  Of course, it isn’t ‘just’ a headache.  I get the dreaded nausea along with it.   There have been times during most days when the pain lessens, but most of the time it’s there.  Today has been pretty bad- I’m taking a chance by blogging, since the scrolling on a page can make things worse, but I have to ‘talk’ to someone.

I e-mailed my primary doc about changing the nausea meds. After several years on Compazine, it seems it’s lost its touch. The leftover Zofran (from chemotherapy for leukemia) doesn’t do much anymore, either.  She called in some Phenergan for me.  The pharmacy didn’t have the full 90-day supply available, but my dad brought me the 12 pills they had. They will call when the rest of it is available.  I was just so thankful to get anything that may offer a bit of relief from something.

I’ve been trying various ‘schedules’ of different pain meds, from different over-the-counter pain killers (Excedrin, Aleve) to a weaker  prescription med (tramadol) to a stronger prescription med (Norco 10/325).  None of it is working.   I even did a ‘bad’ thing today before taking any other prescription meds (so no risk of interactions) and took some methadone that I have leftover from a while back. It isn’t working, and I’m not willing to take another dose before talking to my pain management doctor.  He’s a board certified pain management doc, and not a ‘doctor feel-good’.  He has ‘rules’, which I respect.  I don’t want a doc who calls things in over the phone without assessing me.  I don’t want the drugs per se. I want less pain.  I don’t expect to ever be pain free, but I would like a lesser degree of pain.

Pain-free isn’t a realistic expectation with degenerative disc disease, degenerative joint disease, fibromyalgia, bulging discs (neck),  diabetic nerve pain,  and chronic headaches.  I’m just looking for a degree of relief that keeps me able to take care of the basic chores around home, and keeps me able to do some ‘minimal’  fun activities, such as watching a movie on TV, playing some online games, playing with my puppy, or other such forms of distraction and entertainment.  The last time I talked to my pain doc, we talked about the nature of degenerative disorders… they don’t get better by definition.  The fibromyalgia and headaches are just ‘bonus’ disorders 😦

I have to be careful about pain in regards to the dysautonomia, as well.  Pain is one of my major ‘triggers’ for heart rate and blood pressure changes that can land me on the floor, passed out.  Those who have severe menstrual cramps that cause lightheadedness and feeling ‘faint’ go through something that is essentially a result of the same thing- vasovagal nerve stimulation.  Vasovagal syncope (fainting) is fairly common. But any sort of fainting is a risk for injury.  And injury is a risk for further mobility limitations. I can’t risk that.  I want to continue to live on my own, and I can’t afford help (nor do I want someone hovering over me). Side effects of many pain meds also increase the risk of lowered blood pressure.  I have to keep that in mind with any new medication, as the interactions with the other meds I take can be risky.  I ‘ground’ myself to home when I am put on any new meds, just to be sure I’m not caught off guard at the grocery store or pharmacy (about the only places I go) with some drop in blood pressure from a new med not playing nicely with something else I’m on.

I’m going to have to go see my pain management doctor soon, to discuss a different plan.  I’ve been on stronger meds before, but have asked to go back on weaker meds, knowing that this is a lifelong thing, and I need options for the future.  For the degenerative disorders, spine surgery and another knee replacement are likely down the line, as well as hip replacements. I want to postpone those as long as possible. 😮  There is the possibility of having some sort of pain-nerve impulse thingie implanted (I need to read more about that).  I’m not all that gung ho about ‘stuff’ being put into my body that involves hardware.  I’m hoping that the weight loss with Nutrisystem will also help my knees and hips… my spine is a wreck from neck to bum, so weight loss will be good, but not a ‘fix’.

Methadone scares me. And, today, it’s not working.  But, it might be something I have to try more regularly to get a final ‘verdict’ as far as its real efficacy.  I’m also very reluctant to take methadone after working drug/alcohol rehab, and seeing how it is THE worst in terms of withdrawal. Those patients made heroin detox look like a cakewalk – and heroin addicts had it bad enough.  I understand that I wouldn’t be taking it for illegal drug replacement, and that chronic pain patients who take medications as prescribed are highly unlikely to develop true addiction (different than physical tolerance or physical dependence).  Only %3-5 of patients who take pain medications as prescribed go on to become addicted (which includes the strong psychological components of the ‘high’, cravings, etc). Ninety-five to ninety-seven percent of us don’t become addicted.  The ‘tolerance’ and dependence may require dosage adjustments.  That’s not because of addiction, but the physical acclimation of the body to the medication.  It gets used to the drug being there, and requires dosage changes to continue to provide pain relief.  I don’t like that, but I understand it.

I’ve also been on the fentanyl patch.  I don’t remember it being all that great at the dose I was on, but it might be something else that is considered.  The nice thing about ‘the patch’ was a continuous release of medication, so no ups and downs depending on me taking another dose.  It was also not hard to stop taking.  That has huge ‘benefit’ written all over it.  When I wanted to go off of it, I was weaned down to lower dose patches, and then given pain pills to taper off of the narcotics altogether- no withdrawal symptoms, and it didn’t take that long.

For ‘breakthrough pain’ on either methadone or fentanyl (or the current Norco), I’ve taken tramadol.  It’s not as likely to interact with the stronger narcotics or create an increased risk for respiratory depression (which is essentially what causes death in drug overdoses- accidental or otherwise).  It’s not a great pain killer, but it can take the edge off of the joint, muscle, and head pain that is getting worse.  Things like ibuprofen and naproxen sodium have limited use with the headaches and fibromyalgia.  They do help with the joint and disc disease to some degree, with no neurological or cardiovascular effects.  Worth having around  and taking !

I’ve tried physical therapy, chiropracters, Imitrex (which helped somewhat), heat (but that triggers the dysautonomia), cold, TENS unit, various pillows, and stuff to unclog my sinuses.  If I thought chewing on the siding of my house would help, I’d be out there with the woodpeckers.  While I’m not losing time off of work (been disabled since 2004), this pain of various sorts does change what I am able to do here AT home.  Things like laundry, vacuuming, other cleaning, etc are put on hold quite often.  If I’m having one of the ‘bad’ days, there’s no way I’ll get in a car and go to the grocery store, pharmacy, or MD appointments (the only places I go).

All I know is that the past several weeks (that have come in waves for years) are getting really old. I’m going to have to stop being stubborn about the stronger meds if I want any quality of life between ‘waves’.  I’m already limited. I want to have as much ability to function as possible, and this level and duration of pain isn’t OK.  My pain doc has been very good about letting me let him know when I need something stronger, since I’ve been so hard-headed about using the stuff.  He knows when I say I’ve had ‘enough’ that  I’m not looking for drugs- I want to not hurt (as much).  I need to make the appointment, and go see him (he does NO prescribing/refills over the phone past the ones on any written prescription).  He does NO dosage or medication changes over the phone.  So, I have to drag my butt in there.  He’ll probably do some sort of injection (spine, jaw, neck, occipital nerve blocks, facet injections). The ones in my lower spine seem to help the most- I could tell that my legs hurt less when I’m at the store after I got the last shot.  I may ask for my left knee to get zapped.

Now to just find a day to go and see him when I feel well enough to see a doctor.  But even though it’s been pretty unpleasant lately, I realize that I have so much to be thankful for.  I know that God hasn’t deserted me, and that I can get a lot of comfort in knowing that whenever I get to eternity, I’ll get a new body without pain.  That helps. 🙂

Update:   After being on CPAP for more than a year, the daily headaches are pretty much gone !  They were caused by hypoxia from not breathing at night.  The rest of the stuff is still a bummer, and I’m off to see my regular MD today (10-19-2016) to get medical clearance for massages and a chiropractor.

Sharing Christianity With Love and Warmth

Sometimes it’s hard to be taken seriously as a Christian, as so many Christians come across as painfully judgmental in their tone and overall intolerance- towards those who don’t believe exactly in what they do. We can be our own worst enemies when trying to encourage non-Christians see how Christianity really is an amazing way to get through this life, and that it just gets better!   This age of so much communication being done between strangers with no interpersonal connection doesn’t help much. Reading comments about online articles, stories, etc. are horribly mean and hateful- and the Christians are among the worst at times.  It makes me sad.   I try SO hard not to be one of ‘those’ Christians (and also not to judge them– they have their reasons for their beliefs, even if I disagree with how they come across, at least with how I’ve perceived them in specific online conversations or about specific topics… and I’m not good at that).  I want to be used by God, not drive people away from Him.  That can be a lonely place.  The ‘holier-than-thous’ have no tolerance for ME, and I don’t fit in anywhere because I see approaching people out of love and respect being more important than being ‘right’.

I’m very limited physically in how much I can interact with people (Christians and non-Christians), and so much of what I am exposed to is lacking the ‘in-person’ body language and non-verbal subtleties needed for complete communication. I base my fairly open and ‘cleaning my own side of the street’ approach to a lot of topics based on my belief that Jesus spoke much more about love than He did about judgement.  Jesus loves everybody, and took the ragtag bunch of people around Him to be the ones He kept the closest to Him.  He didn’t look for the legalistic Pharisees. He didn’t take the ones who could recite ‘rules’ twenty-five ways to Sunday.   He chose the hookers, thieves, the poor, and later, even those who used to persecute Christians to help spread His message. Paul was a huge factor in the spreading of the message of Christianity in those early years, and he was horrible to Christians prior to his conversion !   Who am I to only seek out the superficially ‘acceptable’ people to care about?  Appearances mean nothing, both good and bad. (I LOOK very unfeminine, and pretty ratty a lot of the time. Because of some medical issues that make having hair actually a safety issue, as it gets me overheated very fast, and that triggers a lot of unpleasantness, up to losing consciousness… so I look stereotypically ‘butch’, because my head is shaved, and I don’t wear a lot of girly clothes… a t-shirt with flowers is about as ‘foo-foo’ as I get… that’s just me.  I’ve gotten a lot of nasty ‘looks’  and comments over the years about that).  God can use anybody who is willing!  Even if they don’t ‘seem’ like they’re capable of a meaningful relationship with Christ, or ‘look’ like a bonafide Christian 😉

It’s kind of a lonely place at times to not ‘tow the line’ in some very rigid manner. God meets us where we are, and I think we, as Christians, need to show the love of God in ways that fit the person we’re interacting with.   I don’t ‘fit in’ with how I view some very controversial topics in the conservative Christian community.  I believe in the Bible, and that it’s the inspired Word of God.  I also look at the social, scientific,  and cultural norms at the time the Bible was written, and look at ways to learn more about how that translates into today’s society. I am very aware that I don’t know everything.  But no matter how I view something or someone, I feel an obligation to love the person as someone God created in the womb first, and do all things in a way that doesn’t make them run from any message I may have about how God can have a real place in their lives, no matter what any person’s beliefs, strengths, or weaknesses may be.  What good does it do to judge someone, and push them away?  That isn’t the goal !  Jesus told Christians to go into all the world and preach the Gospel… not judge those who will benefit from hearing it (as in everybody !).   God didn’t appoint me, or any other human, to be judgmental.  Matthew 7 is very clear on that.  The Bible is also very clear on doing all things in love.  Focusing on the good, and showing everyone the definition of love in I Corinthians 13, and the Fruit of the Spirit in Galatians.  Those are our standards.

God has been a huge refuge for me during some really hard times.   When I was raped, He was Who I called out to (silently, in prayer) to give me the strength and wisdom to get through it, and escape.  With the chronic medical disorders I’ve got, God is Who gives me the strength to just deal with another day, even when I just want to curl up and sleep until things get better (problem with that is that the disorders are chronic, progressive, and not going to get better).  When I was diagnosed with an aggressive form of leukemia, my comfort came in knowing that no matter what happened, I’d go on in eternity if I died.  I’d be able to reunite with fellow believers who have died, such as family, friends, and people I’ve read about over the years.  I’d like to share that comfort with others.  I’d like others to know that no matter how alone they feel, God is always around.  When I was in the middle of the last eating disorder relapse, I’d ask God every night literally to just let me wake up in the morning.  He answered all of my prayers during all of those times.  I’m still here.

I don’t run around with my religion on my sleeve (though I do have a few cool t-shirts with messages on them ),  but I will be specific about my beliefs when asked, or when I decide to write about it.  I strive to live my beliefs (and I can always improve !).  I believe that salvation is  a choice.  It is not possible to be ‘good enough’ or ‘earn’ a place in Heaven.  Believing in Jesus, His death on the cross, and resurrection as a payment for our sinful nature -by simply being human- is how I believe people get in to Heaven.  The Bible is very clear on that.  But, there are no pre-existing criteria to ‘qualify’ as a Christian. It’s simply telling God that I know I’ve sinned (we all have, and anybody who is at the age of accountability- which varies with individuals and developmental stages and capabilities needs to make the choice for themselves to seek forgiveness), I ask for forgiveness, and I believe that Jesus died to pay the price for my very human nature and choices that have grieved God, and separated me from Him.  I believe that  Christ physically rose from the dead. I believe that He’s going to return one day to gather Christians still alive here on earth, as well as those who have already left this earth. A lot of really ‘good’ people will be left behind.  I believe that when my earthly life is over, my eternal life begins. And I know that no matter how other people, including  Pharisee Christians, see me, God knows my heart.  That is more important than human acceptance.  I don’t ‘do’ legalism…  I cherish my relationship with the Lord, and other Christians.

I also believe that people have the right to decline God’s offer, and by not making a choice, they actually do make a choice.   They have the right to their beliefs as  I have the right to mine.  My beliefs mean that I only see one way for someone to be ‘saved’, and eligible for eternal life.  But it’s not my place to ‘judge’ someone for not wanting or believing that (I can be sad they don’t choose the same beliefs, but it is NOT OK for me to judge that person).  Those who don’t believe as I do will say I’m being judgmental for saying that there is only one way to Heaven… my answer is this: what is in the Bible didn’t come from me.  God made it a choice, whether to believe or not.  He didn’t create us to be robotic followers.  He gave us all free will. But He wants everybody… He won’t push anybody away for any reason…. so how could I possibly think it’s OK for me to judge anybody for making their own decisions?  🙂

Humans (often Christians) screw up the Bible, and how Christianity is perceived, more than any other factor on earth.  The Bible itself is fairly straightforward, and with religious and historical scholars having written volumes on the various cultural, social, and scientific things, it’s easy to see that God’s plan for our salvation is timeless.  It was seen as heresy when Jesus died and rose again- a conspiracy of major proportions.  Some people still see it as such. Some just think it’s bogus.  That’s their right.  It saddens me, but I still accept that they have the choice to believe what they will.  Faith comes with continued belief, and it’s different for everyone.  God didn’t make us all identical cookie-cutter people (pretty great, eh?), so we all ‘do’ this journey in our own way.   And, we can pray for those who don’t believe, and continue to be kind and compassionate towards them.  How will they ever find Christ if Christians are the first to bail out on them?

To me, the requirements for salvation are absolute; there is only one way to become a Christian-  BUT there are as many ways to BE a Christian as there are people… . It’s a choice.  It’s an active belief, not a passive assumption.   God can use ALL of us 🙂 

I believe that God can use anyone who makes him/herself available to Him.  He doesn’t demand perfection. He doesn’t demand we ‘speaketh’ in a completely unnatural way when we talk to Him.  I am not a fan of religion at all (mindless rituals and rules)… God wants a relationship with every single person on this planet. 🙂  He waits until we seek Him, but then we are His forever.  He won’t force Himself on anybody.  He gave us free will.  And, He has a single requirement for being with Him forever…. belief.  Faith grows over time, but belief is a choice.

I can’t imagine NOT believing what I do.  I can’t imagine NOT believing in Jesus, or His death and resurrection.  I can’t imagine NOT believing that He is coming back.  I can’t imagine NOT having the absolute assurance of Heaven when I die. To me, it takes a lot more faith in “nothing” than it does in a loving God whose Son walked the earth in human form over 2,000 years ago.  I also don’t see humans as a lot who are higher up on the reliability scale.  I couldn’t believe in a mere mortal.  Just wouldn’t work for me.   I’m glad for my upbringing in an evangelical church.  I’m thankful that I had good experiences with how God was taught to me, and that I had several outlets that were wonderful experiences to reinforce what I’d learned (youth groups, summer camp, working at the same camp during 2 1/2 summers, choir, etc).  I’m also very glad I read through the BIble cover-to-cover on my own a few times, so I saw what is in there for myself…. not JUST how a pastor saw it. I’m thankful for study Bibles with amazing notes from reputable Bible scholars to enhance my understanding.

I wish that for everyone. 🙂

When Dad Had Surgery

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

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

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

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

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

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

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

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

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

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

Emergency Room From Hell

There is a local emergency room that actually scares me.  I’m not the only one- whenever I mention its name to someone (even my new oncologist who works for the same organization) the reaction is usually “Oh, I know what you mean. I/my brother/mom/ dad/friend/ etc went there and they almost killed me/them.”  Their posted patient satisfaction percentages have been in the %60 range. That is BAD.  Hospitals run on patient satisfaction surveys (which is a whole other nightmare for healthcare professionals).  Reputations are hard to fix.  What is so bizarre is that the rest of the hospital is fine, or at least survivable. I’ve had many outpatient tests, a couple of admissions from the ER, and also a knee replacement at the same place, and the staff was tolerable.  I did have some complications after the knee replacement that were figured out a bit late, but nothing as bad as their ER.

One time when I was admitted, I had a nurse tell me that I needed to go home.  At the time, I was on a heart monitor because my heart rate had dropped into the 30s and was being erratic. But she looked familiar- I think she was one of the hags from the ER who was working on the cardiac floor.  I never could figure out how nurses could be so nasty.  I’ve had some unlikable patients, and some that were really unpleasant to deal with- but I’d never be inhumane or callously disregard their dignity.

I’ve got multiple chronic illnesses, and I’ve been an RN since 1985.  I’m on disability, but I keep my license current, and I know the appropriate manner in which to speak to and deal with patients. I’ve been a staff nurse, supervisor, charge nurse, and department head.  I’ve also been sent to various ERs over the years, though this scary one has been the worst, hands down.  Not even a close second comes to mind.   I was often sent there from work, unconscious, either from being post-ictal (what happens after seizures when people sleep very deeply) or my blood pressure bottomed out from my autonomic nervous system not working right (dysautonomia), and I’d pass out.

Other times, someone called 911 when they were either with me, or on the phone with me, and they could tell something wasn’t right (turned out I had some medication interactions that weren’t figured out for quite a while that contributed to some of the blood pressure problems).  I was labelled a ‘frequent flyer’, which is an extremely derogatory term given to patients who generally don’t have primary doctors and are often non-compliant. Neither of those applied to me. I saw my regular doctor monthly, and all blood levels of anticonvulsants were always therapeutic. I’m on disability because my seizures are not controlled. I’ve had testing done to see if part of my brain could be removed to stop the seizures, and that turned out not to be possible without causing more damage than it could help.  I’m not some joke patient who shows up for the heck of it (I’ve been accused of being bored, and using the ER for entertainment at the bad one).

But, the nurses and doctors at this ER didn’t care about me as a human at all. They never asked about regular doctor visits.  I was told I was a ‘wasted bed’ because I’d been brought in with seizures.  I was told that it was highly unlikely that I was compliant with anything.  They didn’t understand- or even try to find out- what I was really like as a patient- when I said anything that contradicted their assumptions, it was ignored. They made their assumptions and treated me as the parasite they thought I was.  The dysautonomia isn’t all that common as a given diagnosis.  It causes extremes in blood pressure and heart rates (and for me, heat and pain are major triggers).  My blood pressure would drop to a dangerous level at home  and per my primary doctor’s instructions, I would call 911 when it got below 70/50.  It was often much lower, and the lowest I know it to have gone is 44/16 during a tilt table test.  Even with objective symptoms, I was treated like a head case.

I rarely remember getting to the ER.  I had learned that when I woke up and saw the drop ceilings and bright lights and equipment, I was in the ER.  One night I woke up and a doctor was counting my pills from medication bottles EMS had brought from my apartment when a neighbor called them after I passed out in her apartment.  I asked him what he was doing, and he asked if I’d overdosed. I said definitely not- and asked what happened. It had taken 4 bags of IV fluids to get my blood pressure up to 80 systolic, and the nurses were getting me ready to go to ICU for dopamine (a resuscitative drug to maintain blood pressure). I ended up not needing it, since I managed to stay around 80 systolic, and I was making sense once I regained consciousness. But in the preparation to send me to ICU, a urinary catheter was inserted.  The balloon that keeps it inside was inflated before it got all the way into my bladder, and stretched my internal sphincter (what keeps the urine in the bladder) and upper urethra…talk about pain. I told the nurse it wasn’t all the way in, and she turned to leave the room without saying a word. I pushed it in the rest of the way myself.

Another time, I had just ‘come to’ and saw a doctor walking past the stretcher. I was still groggy, and he didn’t say anything to me, so I didn’t talk to him. I didn’t know what he wanted (or for sure that he was even a doctor for that matter- some guy in a white coat). He proceeded to begin to insert a breathing tube into my airway- something that isn’t done without someone to suction in case the patient vomits, some paralytic drugs to dull the gag reflex (to prevent vomiting) and calm the patient IF they need to be intubated, and without asking the patient if they are awake and know what is going on.  I have no idea why he wanted to intubate me (which more than likely would have landed me on a ventilator). He started putting the metal blade of the laryngoscope down my throat (has a light on it to see where to put the tube), and then the tube, which did trigger my gag reflex and I started to throw up. I turned my head to the right to let the puke fall out, and the metal blade (still down my throat) nicked my right tonsil, and it started bleeding. A nurse came in (finally) and since I was trying to breathe and reflexively trying to get the stuff out of my mouth and airway, they tied me down.  The doctor finally took the stuff out of my mouth and asked if I’d OD’d… I said “No!”.  He said “That’s all you had to say.” I couldn’t believe it… that was all HE had to ask !  I didn’t even know why I was there (still don’t), and it was HIS job to assess me before attempting to put in an endotracheal tube. It could be that because he assumed I’d OD’d that they were going to pump my stomach, and the ET tube was part of keeping my airway safe. But, nobody said anything to me. My medical record would have shown other ER visits with similar symptoms and ‘clean’ drug screens… There was one nurse who was helping me get cleaned up after the throwing up who was kind. She had a daughter with seizures and understood the post-ictal period.  I was just mortified.

I never got on the call light (when I could reach it), and would undo the monitors myself if I had to go to the bathroom, and put myself back on the monitors when I got back. I never asked for pain meds. I didn’t ask for anything.  I was never there for psychiatric reasons (patients who are not thought of well in most medical facilities, mostly from lack of knowledge and exposure to the various disorders). And yet I was treated like I was a total pain in the butt and whack job.

When someone comes out of seizures, there is generally a period of time when they are either extremely sleepy (and even coma-like) or mildly confused for a little while. Not everyone ‘comes to’ the same way. Not everyone has ‘TV seizures’.  I have complex partial seizures that turn into generalized seizures at times (when I end up ‘out cold’ the worst).  When I come to, I can hear things first, and then gradually get back up to speed- but sometimes my response time is slow.  The nurses at this ER from hell didn’t like that, so they’d double team me and put TWO  ammonia inhalants under my nose and hold them there as I gasped for air.  I was awake and knew what they were doing- but I wasn’t ‘all the way back’, so my response time was too slow for them- so they assumed I was a psych case being difficult. Or faking.  They were punitive.

When Social Security was reviewing my disability paperwork, they had over 1000 pages of medical documentation over the previous 3 years, including abnormal EEGs (brain wave tests used to help diagnose seizures/epilepsy) and blood pressure crashes.  But the nurses at that ER thought I was a nut job.  I was horrified that SO many nurses like that exist.  When I’d worked in Texas for 17 years before returning to Illinois, I worked with great nurses. Even if someone wasn’t necessarily going to be a ‘friend’ outside of work, I never saw cruelty or pure meanness.  We had a lot of wild shifts at work- and I never saw one of my coworkers in Texas act like those hostile nurses in that one ER.  I’d worked in another hospital in this town (pediatrics) and then a nursing home- and those nurses were also good to their patients.  But the nurses in that ER of the religiously-affiliated hospital were downright nasty. The docs weren’t much better.

When I was taken in for very low blood sugar one time, they got my blood sugar up with two ‘amps’ of D50 (sugar solution given IV), and then called a cab.  The nurse told me that it would be about 45 minutes until the cab got there, and I should wait in the waiting room. Basic treatment of hypoglycemia instructs people to eat a snack with protein and fat to prevent blood pressure from crashing again once the D50 ‘wears off’, unless their next meal is within the next 30 minutes.  I was sent to the waiting room with nothing (usually a half a sandwich, or peanut butter and crackers is standard hospital fare for low blood sugar after it’s brought back up).  Fortunately, I had my purse with some change for vending machines, and my own blood sugar monitor.  Within a few minutes, I could feel my blood sugar dropping even though I’d gotten a bag of peanuts from the machine.  I tried Coke, and it was still dropping. When I told the person at the triage window, she told me I’d already been treated, and if a nurse had time she’d come and talk to me.  I was safer on my own.

There had been a weird period of time when I was having episodes that were much like the autonomic disorder, and a bit like seizures, but not quite. I had been in the ER (per home health instructions) several times in one month. One night, I was having more trouble with my blood pressure, and went to the ER. The doctor actually told me I’d been there too much that month, and he wasn’t going to do anything. I asked if they could at least check my blood pressure again (it had come up somewhat from being moved from the ambulance stretcher to the ER gurney), and he refused to tell the nurse to simply push the button to do another BP reading.  He never got within 5 feet of me.  Ten days later, I had severe chest pain, and ended up going to another ER (per the instructions of my doctor’s nurse, who was affiliated with the scary place), and it was discovered that I had multiple blood clots in my right lung (all three lobes) and right pulmonary artery that were pushing into the base of my heart, causing EKG changes that showed my heart wasn’t getting enough oxygen (just from the pressure of the junk in my lung).  The clots were of various ages- acute, subacute, and chronic- so would have been present during the time when the doctor negligently blew me off. He could have killed me with that decision.

I’ve written to the hospital with the creepy ER, and got the standard ‘we aim to give the best possible care’ letters. My own doctor was told by one of the few nice doctors at the bad ER that he’d witnessed how I’d been treated. It wasn’t just me being snarky.  My doctor believed me. The ‘new’ ER saved my life.  I had asked the doc at the ‘good place’ that night the pulmonary emboli were found if I could go home and get a few things since I was being admitted for a few days, and she told me she didn’t think I’d live that long; the next night I was in ICU getting clot-busting drugs when I started having the same pain again.  I’d driven myself to the ER… not recommended.

For those in nursing school, new grads, or starting to work with different types of patients,   consider this:  You aren’t going to understand everything about everybody you encounter as a nurse. But just because YOU don’t get it doesn’t mean it’s OK to take out your lack of knowledge on the patient,  who could very well teach you something.  Cruelty during urgent/unstable medical situations  is never justified.  And it’s not something that can be ‘fixed’ later. You represent where you work, and your profession.  It’s not about you when you’re assigned to take care of someone.

Long Term Disability

As a registered nurse, I saw people on a routine basis who had life-altering events happen to them. They were my job.  Many who were of working age were permanently and/or catastrophically injured.  Others had injuries that eliminated them from eligibility to pursue their desired careers.  I saw bad stuff.  Because of that, I always insured myself to the max when I began a new job and was in the process of selecting benefits.   I never imagined that my life would become what it has, but the decision to get long term disability insurance has been extremely worth the premiums I paid when I was working. If I hadn’t purchased LTD, I’d be in a way different situation than I’m in now.  My monthly income is approximately 2/3 of what it was when I was working.  Without LTD, it would be less than half. 

I wasn’t eligible for short term disability, or I would have bought that also. I had to cash in a 403B to make it the 3 months until LTD kicked in. Even with that, I had some help with a couple of months’ rent.  Diabetes was the problem with getting STD, which had nothing to do with why I ended up on disability.  Now, with the healthcare reforms, I’m not sure if disability insurance falls under the mandatory acceptance of pre-existing illnesses, or if that is just for medical insurance.  I always tell people to get whatever insurance they can; nobody knows what can happen.

When I was first having problems with dysautonomia, I had some major issues with staying employed. I managed to do so, but it wasn’t easy.  Many times, I would either lose consciousness, or my blood pressure and heart rate would become so abnormal (either too high or too low) that I’d become unable to function properly.  The job I was at when the dysautonomia first surfaced was at a drug and alcohol rehab facility.  I was the only RN on campus when I worked, so being conscious was required… 😮  I often had gait problems (couldn’t walk straight), and my speech and reaction times were altered.  I looked like I belonged with the treatment side of things- not the help.

My boss at the time wasn’t a great communicator, but was very fond of ‘contracts’ as if the diagnosis was somehow amenable to behavior modification (medical nursing wasn’t his forte). That irked me to no end, but I really liked the job and my co-workers.  I fought like crazy to stay employed, and fortunately had a wonderful neurologist in that small town. She was familiar with dysautonomia (most people haven’t heard of it, including doctors in ERs or general practice), and knew which medications to try after the electrophysiologist confirmed that my tilt table test was positive (my blood pressure dropped to 44/16).  My neurologist started me on Neurontin after atenolol, Norpace CR, Depakote, and propranolol alone hadn’t helped, OR had made things worse.  It was a nightmare of trying new meds, only to have a week or two when things seemed different (in a good way), and then headed south.

Neurontin bought me eight more years of being employable. That was huge. I did end up leaving that  drug and alcohol rehab facility, but it wasn’t because of my medical issues. There were major safety issues with the detox unit at the time, and I wasn’t willing to keep waiting for disaster to happen.  It was too stressful, and that didn’t help my blood pressure or heart rate.  I was lucky to be an RN in a town that often hired RNs from out of the country to fill in the gaps; I got another job in about 45 minutes from application to the phone call offering me the position at a nice nursing home.

When I worked at that nursing home in the small town in the Texas Hill Country, I found that the administrator and director of nurses were willing to work with me, and saw what I had to offer- not just my ‘bad days’.  I was loaned a cushioned mattress overlay to keep in my office, so when I felt bad I could safely lie down and sleep it off (off the clock), and then get up and resume my work when I was doing better. (I did MDS assessments for Medicare patients- desk jockey).  By the time I worked in the general hospital in the same town (where I’d worked before, and knew who I was working with), the Neurontin had really helped to stablize my condition well enough to work 3 12-hour shifts on weekend nights on the general surgical floor.  It went well; I was encouraged.

About six years into that eight years of employability, I moved back to the Midwest where I’d grown up.  I started on a pediatric floor, but it wasn’t long after starting that job when the symptoms became a major problem.  The first time happened when I was  in my car on my way to a shift, and my heart rate was in the 140s, which meant that I had little time before it nosedived, and I’d pass out. I knew that I’d have to pull over if my vision started to ‘tunnel’ and my hearing began to dim. I talked to myself, “you’re going to be ok”, “you’re almost there”, etc.  I was almost to the hospital, and managed to make it to the floor where I worked, and get help from my co-workers. They could tell immediately that something wasn’t right.  I was still conscious when they took me to the ER, but I don’t remember much of what happened.

I turn blue during these episodes, and then become cold and clammy, but my face becomes extremely red (almost a bluish-red) and very hot.  At some point, I fall into a deep sleep, and become white; I’ve been told I ‘look dead’ several times.  I was back in contact with neurologists and cardiologists, and one month long monitor showed that I was having  PVCs (that I could feel), which required medication adjustment. It seemed to help, but I still wasn’t doing well. Initially the cardiologist poo-poo’d my reports that I felt something. Then she saw the monitor report.

I was working with sick babies and children. Some of these babies were four pound preemies that were moved from the NICU because of a boom down there (had three sets of triplets born one week, so they were going nuts in the NICU).  These kids needed constant monitoring, and I was feeling less stable even picking them up.  It didn’t help that the temperature in the halls was kept over 76 degrees, and one nurse refused to agree to me having one area (out of the way as needed) where I could lower the thermostat; that was a huge problem as heat intensifies the symptoms. I could have raised a stink with the Americans With Disabilities Act, but even at home in a controlled environment I wasn’t well.  There were many nights when I didn’t make it through the shift, and was either taken to the ER in a wheelchair, or sent to lie down until I could drive home.  I needed to leave.

I went to work at another nice nursing home; I figured that pushing a med cart, and having little direct care (and risk of dropping someone) was a better option. I was soon put into another desk job (doing MDSs) because I’d done them before.   I did well enough to pass muster for a while, but again began having the episodes where I’d change colors, and eventually pass out, or fall into a deep sleep for hours.  Some of what was going on was epilepsy (something I’d had for decades by then, and has been diagnosed as temporal lobe epilepsy).  There were times when the symptoms seemed to overlap.  All I knew was that I was deteriorating.  Towards the ‘end’, I was being sent out by ambulance after someone heard me hit the floor, saw me pass out, or heard the ‘thud’ in my office. I don’t remember any of the actual ambulance ‘rides’. I was sent out 10-12 times over a 2 month period. I usually came around sometime after getting to the ER.  My boss told me it was time to tell my doctor about the need for disability (and she helped with whatever information my doctor needed, and I’d consented for the information to be exchanged).  Human resources got me the forms for LTD- which wouldn’t go into effect for 90 days.

I was horrified not to be working.   Nurses don’t just stop being nurses. In my opinion, it’s a lifetime frame of mind.  I still look at people’s veins on their hands when I’m in the line at the grocery store, and size up the ease of IV insertion. I still AM a registered nurse; I do my CEUs and renew my license every 2 years. But I’ll never work again.  So much more has happened since going on disability that has eliminated my chances to work again. I tried to go back after about 7 months, but I couldn’t do it.   That saddens me every day.  I’d figured I’d be clunking up and down the halls of some healthcare facility until I was at least 62 years old. I didn’t make it to my 40th birthday.   But I’m very thankful that I’ve been able to remain in my apartment in a decent part of town. Without LTD that wouldn’t be possible.  I have a lot of premiums to pay because I’m now on Medicare (about $100 for ‘Part B’, $225 for the supplement to pay what Medicare doesn’t, and $70 for the ‘Part D’ prescription drug plan- and any co-pays).   My LTD check roughly covers rent and my premiums.  That is a major part of my expenses.

The point to all of this is that nobody knows what will happen to them.  Whether it be illness, injury, or accidents with life-altering consequences, life is unpredictable, and we’re not guaranteed to get through it unscathed.  I never saw this in my future when I started out as an idealistic 21 year old RN in 1985. But this is what it turned out to be.  I’d encourage anyone who has the chance to get STD/LTD insurance (preferably both, but LTD for sure) to get it.  Skip a night out once a month.  That may be the difference between living in a housing project or staying in a familiar place while dealing with a ‘new normal’.   Disability is structured as such that you won’t qualify for many  additional assistance programs. The ‘extra’ income from an LTD policy makes an indescribable difference.  Things are still tight- but I get by.  I’d much rather be working, but I’m thankful that I’m not in worse shape.

Well Pancreas, It Was Nice To Know You

Sigh.  I’ve known something was wrong since my blood sugars started going insane while I was on chemotherapy for leukemia.  For the year on chemo pills methotrexate, tretinoin, and M6mercaptopurine, and the prior 50 doses of arsenic (IV), my blood sugars have been impossible to control if I ate anything at all.  So, I did some reading and found that the immunosuppression effects of chemo may have caused enough damage to my pancreas that it no longer produces any insulin.  The weight I gained on chemo make my body resist any insulin (‘homemade’ or shots).  So my blood sugars are insane.

Let me rephrase that.  I can’t get my blood sugars to the level of control I had prior to the chemo, which was essentially that of someone without diabetes.  I took 4-5 insulin shots a day to keep it ‘normal’, but that was a small price to pay to buy some insurance for my eyes, kidneys, and legs.  My last HgA1C (the number that shows 3 month ‘average’ blood sugar, that is helpful for showing overall control) wasn’t that bad in February 2012.  But it was up by 1.5 points from pre-chemo.  That’s not acceptable.

While I was still on the chemo pills, I had days when my blood sugars would actually go into the 300s.  It hasn’t been that high since I was diagnosed in 1995.  Most days I went into the 200s.  My ‘old’ normal was to have a fasting blood sugar between 65-85mg/dl, and a rare 100-105mg/dl.   Now, with tight monitoring over the last week (and a trial of different insulin dosing patterns), I can’t get it below 130mg/dl.  That’s not acceptable.  I’ve been ‘eye-balling’ my carbohydrate intake for months, but started writing down everything this week.  It’s not what I’m eating.

My weight gain since being on chemo has also been an issue.  Insulin stores fat (and I’ve had to use more insulin).  Fat makes the body resist insulin so it needs more insulin; it’s a vicious cycle.  I’ve been eating around 1400 calories, and I’m not losing weight (I was told to consume 1400-1600, so I’ve been at the low end).  But I’m having to use a lot of insulin, so what I’m eating is being stored.

I’ve seen my internal medicine (primary care) doctor regularly, and e-mailed her with what has been going on.  She confirmed that the chemo could have made my pancreas useless as far as insulin goes.  I’ve been resistant to seeing any of the local endocrinologists because of bad experience in the past.  The one I saw seemed to want things to get ‘bad’ on paper before doing anything  proactively.  I don’t work that way.  When I see trends going south, I want to do something to fix it.

What is the rationale behind watching something get to the undesirable stage before doing something?  When someone has a heart attack, does the doctor wait until they need CPR before doing anything? NO !  I don’t want vision problems.  I don’t want to go on dialysis. And I don’t want anything amputated.  I want to minimize my risks by taking care of things before I have other symptoms or complications.

I got an e-mail from my primary doc this morning.  She wants to refer me to an endocrinologist, and told me that we have a Joslin Diabetes Center doc here in town.  The Joslin Diabetes Center is the biggest researcher of diabetes in the world.  I’ve known about them for at least 15 years, and have read some of their older books.  They are ‘da bomb !   I told her I’d be happy to see someone that follows their protocols. No problem.  SO there is hope. There is someone with direct access to the biggest collection of data on diabetes. I can’t ask for more than that.

I’ll be doing even tighter monitoring and recording until I see this new doctor.  I want to have the most amount of information I can to give to him/her at the first appointment.  There’s no point in going in to be told to keep track of things, just to go back again if I can have it to start with.  I have to get this blood sugar business taken care of.  I’m enough of a medical train wreck.  If I can DO something, I want to get after it, and get it done.