Why…?

For quite a while, I’ve felt like I really don’t have a group of people that I can really call a core  ‘community’.   Yes, I’m a Christian, but I am tolerant of others’ choices for their own lives, even if I don’t understand them, or in some situations have any interest in hearing about them ( I don’t want to hear about anybody’s sexual interests… not. my. business.).  I refuse to shun the person.   Why do I have to believe the same as some other human?  Just because they’re a pastor or Bible teacher doesn’t mean they got it right (just watch late night TV preachers… they cast a shadow of doubt on a LOT of Bible teachers, no matter what level.)   I do believe that many are good pastors… but I won’t support any preacher who cherry picks which people are worth their compassion and attempts to understand.  I won’t support any preacher who promotes intolerance.  God made us all.  Period.  And we’re all flawed. Period.  Not one of us is better than the other.  Why do Christians tolerate intolerance?  I don’t have to agree with someone to understand that the choices based on the free will GOD gave them is their prerogative- and it doesn’t have to be mine.  I don’t have to shun them.   I feel like  an outcast most of the time.  I feel shunned by the ‘shunners’.    Add to that that the country is going down the tubes, and I really don’t like most people.     Why do people insist on continuing to prove that they are best avoided?   Or simply say they’re  one thing, and then never back it up?

I haven’t been a regular church goer for a long time (work hours when I was working, then  medical issues that make being away from home for more than a brief time logistically difficult).   Now the folks who went to the church I grew up in will take THAT statement as the reason for all of my frustrations… but my personal faith in God/Jesus is  stronger than ever.  God is the only constant and hope I have, and HE is more than enough.    I KNOW what it was like growing up in a  subculture of evangelicalism- and as a kid I loved going to church.  It was a great experience in the youth groups, choirs, teaching Vacation Bible School, working at the summer camp, and babysitting in the church nursery.  I truly loved it.  Since it was essentially my only source of social contact, there were no conflicts.  I was still ‘one of them’.  We all believed the same. For the most part.  My folks enjoyed a glass of wine now and then, and dad might have a beer (one) once in a while, where as many were convinced that even one drink was a sin (drunkeness is a sin… a social drink is not, imho).  But the ‘big stuff’ was all part of the church teaching.  Without any personal thought involved. Back then, it was just how things were.   I’m very thankful for a solid church upbringing (and the vast majority of my core beliefs are the same);  it was a consistent environment.  It just didn’t allow for exposure to the actual world as a whole. I had no idea that things could even BE all that different among other people.

As a kid, it really didn’t matter to me what or who was ‘in the real world’, since school and (figure) skating were my pretty much my only exposure to people who didn’t go to that church (there was the trip to Europe in the summer of 1977, where I first saw men openly holding hands while walking down the streets of Amsterdam, and hookers had storefront windows with literal red lights that glowed if they were ‘busy’).  It was a time period where society wasn’t as cruel as it is now, and the anonymity of the internet wasn’t even on the radar- so any criticizing, mocking, and name-calling was done in person, and ONLY among  very close friends- unless it was overt cruelty towards strangers.  Thankfully, I didn’t get subjected to that sort of “Christian”.  I was a kid, so not really expected to know any different.  People were simply more decent, in my opinion.  The ‘don’t ask, don’t tell’ philosophy had little to do with anything related to sexual orientation in my world,  but included politics, money,  and religion when being amongst folks whose views weren’t already known.   Why did people find it OK to reject others as ‘the enemy’ when they don’t even know them, most of the time based on assumptions from one comment?

Well, then I grew up.  After nursing school, I moved 1200 miles away on my own to start out my life out from under the shadow of being “the principal’s kid”.  I was not only in a different state and overall culture, but was in a city that had  a huge variety of people whose demographic groups I’d never encountered.  The first cross-dresser I ever saw was at a Walgreen’s checkout.  He was buying the make-up for himself, which I hadn’t even thought happened , until he turned around and smiled politely at me with full face make-up (foundation, mascara, eyeliner, blush, lipstick).  I was gobsmacked !  Where in the world had I landed? Why does the church exclude simply informing the high school kids (who are about to go out into the world, either in college, trade schools, or straight into the workforce? What about the various types of people in the world, and how best to show kindness?  Why don’t they teach about using one’s brain to determine if a situation is safe- and not just a blanket “help your neighbor”? (That omission almost got me killed in January 1987).  Though now, I guess evangelical churches have some exclusion clause to avoid anybody gay, who’s had an abortion, or is on food stamps.  Those issues seem to earn rejection without regard to the person who is struggling because of them. Why is avoidance the way to deal with the world when we’re commanded to go INTO the world and preach the Gospel- or at least show the love of Jesus.

https://www.biblestudytools.com/topical-verses/bible-verses-about-loving-others/

I was also a young nurse during the early years of the AIDS crisis.  I’d never known anybody who was gay.   Church hadn’t really mentioned homosexuality much, if at all.  It was a ‘given’ that men loved women, and women loved men.   Women wore makeup, men shaved their faces, and things were supposed to be all “Leave It To Beaver”.  I knew the terms- polite and otherwise – for homosexuality and what it meant- but that was it.   I had no clue that even in my own family, that there were those who were ‘different’ (neither of the two I knew back then were ‘out’ at that time, then two more became known when I was much older).   I wouldn’t trade them for anything.  All four (known) are/were (one is no longer alive) stand-up folks, and simply a joy to be around.  Why shun an entire demographic group?  Were they not also created by God? Why is it so hard to believe that there are gay Christians?  The Bible shouldn’t be used as a weapon to inflict pain? (I’m not talking about instruction and correction, but context and approach are everything…).

I have no idea how many gay men I took care of who had full-blown AIDS (“HIV positive” really didn’t happen without already being very ill… the disease wasn’t identified until various symptoms of full-blown AIDS had already developed; now, better testing and antiretroviral meds enable those with HIV to live much longer, and with a decent quality of life).  In the early years, HIV was an automatic death sentence.  There was no hope at all, like there is today.  Most of their families back then, and even their partners, had kicked them to the curb.  Families were ashamed, and partners were terrified to be associated with someone who had “it”.  But what I learned was that these human beings were going through horrific, long deaths, that left them just alive enough to realize they were never going to be OK, and that they’d been abandoned.  Why  shun those who need compassion?  Would Jesus do that?   I also learned about the dangers of stereotyping when an entire heterosexual and monogamous  family died from AIDS after the wife gave birth to the son, but needed a blood transfusion- with blood that wasn’t tested for the virus back then- then breastfed her son, and had normal sex with her husband.  All three died.  Nothing they did had them ‘in the closet’, or on anybody’s ‘judgement’ list.   I was beginning to understand that things weren’t always ‘this or that’, ‘black or white’, or even ‘because of’ assumptions.   All of these people had names and stories, and there simply wasn’t time or desire to judge or hate.  They needed compassion.  Why not just reach out to anybody who is hurting, without judging?

Why are LGBTQ and abortion the only issues that fire up evangelicals ?  Of course, life is precious. Yes, the Bible talks about homosexuality. But what about those babies who need healthcare throughout their life? Then it’s more like evangelicals are pro-birth. Not the church’s problem after that.  Why doesn’t everyone deserve healthcare?  Would Jesus turn away someone who was sick?  Who are we to ‘declare’ that some deserve healthcare, and some don’t?  What about equality among races? What about the issues with guns, prison reform, education reform, cleaning up the history books, etc?  What about OTHER issues and sins?  We all sin. We all will sin again. No sin is worse than others, except for one. We need to clean our own side of the street. We all need to confess our sins, and ask for the Holy Spirit to guide us. And it might take several times before we get some things under control- but we distract ourselves by looking at the faults of others when we have enough faults to sink our own ship.

https://bible.knowing-jesus.com/topics/Jesus-Healing

https://www.biblegateway.com/passage/?search=Matthew%205-7&version=NIV

Why the contempt for those who need help?   There is an assumption that the majority of those on welfare or food stamps are just bums who don’t want to work- which is cruel. Why  choose to believe the worst?   It takes a LOT of hassles to get help !  And even then, it’s a sub-poverty existence.  I’ve been on disability since 2004, and until I was eligible for Medicare 2 YEARS after getting Social Security Disability (not the same as the private employer-based disability insurance I paid for when I was working), I  would have had to spend $2000 per MONTH before I was eligible for Medicaid benefits. Each month.  That would have meant no apartment, utilities, medications, food, etc…  AND, you have to have an address, so if you live in the car, there’s no address, so no benefits.  So the government sets the income cut-offs for getting help  to exclude the majority of people who need help.    How does it make sense for someone who is medically disabled to not have access to medical care, including medications?    Why are only some people worth taking care of?   Would Christ look at someone who  is sick, hungry, naked, and/or homeless and kick them to the curb?   Not the Lord I learned about !  Remember the sheep and the goats?    There is some belief that people in this country are taken care of no matter what.  That is false !   People die here daily because they can’t afford medications or treatments.   And it’s not just cancer.   Why is that OK?  This was from 11 years ago- can you imagine what it is now during unemployment during the pandemic?

New study finds 45,000 deaths annually linked to lack of health coverage

Why can’t we just disagree, and not be told “Oh, it’s no big deal” (well, to me it might be !), or “get over it” (why should I, when the person who told me this is still complaining about Obama, and called Mrs. Obama the ‘n’ word repeatedly- from her evangelical tower?).   Why can’t we just understand that everybody views things in different ways EVEN when we all believe in God (for those who do) ?   There isn’t just one ‘flavor’ of Christian !!  It’s a little like the four gospels- each author had a different viewpoint, but that doesn’t make any of them wrong !    Matthew was a tax collector.  Mark never actually heard Jesus, but followed Peter, and interpreted for him when needed.  Luke was a doctor.  There is no consensus as to who specifically  wrote the Gospel of John- as well as 1 John, 2 John, 3 John, and Revelations.   But all four loved the Lord.  Why is it so hard for Christians to understand – and tolerate- that the belief in Christ is so much more important than the specific  issues that are argued about?

Why not believe in science?  Who do Christians think created EVERYTHING that scientists study?  What is wrong with using intelligence (God-given) to study things that God created, and then act on those discoveries?  If not, we’d still think leprosy was only good for a trip to a colony, a woman on her monthly cycle should be booted out of the common bed and any furniture for 7 days, be making our own candles for light, riding horses, and shrimp on the barbie would be taboo, among a bazillion other things. Those rules were given by God for the time period when there were no treatments for leprosy, no sanitary products, and no cure for hepatitis A, and the rest. Same with the kosher dietary laws- they are all health related.  You can ignore a tornado warning, and still get flattened. You can ignore science, and still have stuff happen.  The Bible didn’t say exactly HOW some of the things during End Times would happen… but I bet there will be some that are now able to be figured out through science- those who wrote the Bible only had their frame of reference.

Why has it all ended up like this?   And why does it seem like people would rather be nasty or “right”, or not understand that it’s OK not to agree on everything, even if we believe in the same God?   That one baffles me.  We are all PARTS of the same body.   I’m just glad that God knows my heart- and those who judge me are really judging themselves.   I might not tow the evangelical rope any longer (I prefer ‘non-denominational’)  but I still believe in the same God of my childhood… and miss those who were part of it. It saddens me that the toxicity definitely doesn’t seem to be even close to coming from God (my opinion- I get that, just as others get theirs)    Why is that so ‘bad’?   Why has it become so much more preferable to simply avoid humans who don’t agree, or not bother to get to know some of them?  The Great Commission would be a short assignment if all we do is preach to the choir.

Why do I never hear from folks who claimed to ask my dad about me, after I became disabled?  I tried calling a few, and reached out to the church when I was still able to leave home (this stay at home stuff has been my normal for 16 years). But out of sight, out of mind- and I’ve gotten used to it.  It’s OK now. I got tired of initiating everything… it was obvious I didn’t fit in anymore because I wasn’t just like them…those who had been church ‘family’.  Even something as non-threatening as being disabled is blown off. Fortunately, I grew up without siblings, so the dog and I get through the days just fine.  I thank God that He made me the way He did. In the long run, it really doesn’t matter what the excluders say.  God knows my heart, and feels my pain. And that  brings a lot of comfort.

I pray for all of the people I used to know. They were my frame of reference as a kid.   I wish them all the best in everything they do, and that God blesses them more than I can even begin to understand.  He is the author of love. He is the One who answers the ‘why’… though I may not get the answers as quickly as I’d like.  But I know He’s got all of it under control in His timing.

Updated for 2020.

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.

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

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

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

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

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

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

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

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

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

Dysautonomia and Disability- Social Security and Medicare

According to some, I’m nothing but a leech on society.  Here in the US, needing help is seen as being nothing more than a parasitic slug that simply doesn’t want to work. There is no distinction made between those who are lazy (a minority of the people on government assistance), and those who have worked for many years, only to become physically ill and unable to work, by those who ridicule the ‘entitlement’ help out there.  It’s so disheartening to be lumped in the category of those who want handouts. I’d give anything to have my health back.

I spent 20 years working as an RN- in staff, charge, supervisory, and department head positions. Who knows, I may have put an IV in you, or wiped your butt.  I may have been the nurse who called your elderly mom’s doctor 8 times in two days to get an order for her to be seen by a specialist.  I may have spent an hour getting your preemie to drink two ounces of formula. You don’t know. To you, I’m worthless now, and just want ‘entitlements’.  You see me as someone who just wants free stuff… such a cruel and uneducated view.

Well, let me tell you about the ‘free’ stuff. I paid into Medicare during the 25 years I worked (I worked prior to and during nursing school as well as my years as a nurse). I paid into Social Security during those 25 years as well.  I’ve never been on food stamps.  To get Medicaid assistance, I had to meet requirements I didn’t qualify for until a horrendous couple of years of life-threatening blood clots in my lung, and then an aggressive form of leukemia. Those aren’t even the reasons I’m on disability (autonomic dysfunction/dysautonomia and seizures are the culprits there).

To get coverage that meets my medical condition needs, I pay around $500 per MONTH in premiums for Medicare Part B, Medicare Part D, a Medicare supplement that covers what Medicare doesn’t, and prescription co-pays for medications that don’t come in a generic form (insulin is the big one).  That’s not free.  That’s $6000/year (Obamacare or not- it’s BEEN this way for years).   So tell me how I’m living some life on the dole, and just sucking the government dry…

I’m not able to walk more than 100-150 feet without pain that is intense enough to change my plans.  Even with my walker.  To make a sandwich means I’ll hurt. Doing a load of laundry cause intense back and leg spasms.  Bringing my groceries in from the car means a LOT more pain.  I live alone. There is no help for the mundane- I simply have to get it done…or not.  I do the best I can.  And then I see so many hateful comments that don’t differentiate between those who can’t and those who won’t.  And the difference is huge.

To qualify for Social Security Disability isn’t an easy thing.  I had more than 1000 (one thousand- not a typo) pages of medical documentation, so I was approved on the first application. Some people have to appeal several times before they get approved.  People with obvious disorders have more stress by not getting the help that they need.  Do I think that there are people who abuse ‘the system’ ?  Yep.  But I don’t think they are the majority, by a long shot. People become homeless waiting for help- people don’t fake that.  And, I don’t think I’m the only one who feels hated for needing help.  I have a disability policy from the last place I worked- before being sent out by ambulance from work roughly a dozen times during the last 2 months I worked there.  That  private policy allows me to have %66 of my last monthly salary for my total monthly income (with Social Security paying the first part, and the private disability policy paying the balance of the %66). I lost a lot of money by being disabled.  If I didn’t have that policy, I would be living in some pit, in some trashy neighborhood, hoping everyday that nobody shot my windows out.  Do I deserve that simply because my body fell apart?

I never know when my body is going to poop out on me for something as mundane as the thermostat being warmer than I can tolerate. (One former co-worker RN refused to allow me to have a small space on the pediatric floor where I worked to set the thermostat to a temperature I could handle, so I could do my charting- and she was the boss’s pet, so I was screwed… the area I wanted to cool off would not have affected her or the patients in the least….she was simply a cold-hearted bitch with no consideration for what was going on with me; I could have done a big ADA scene, but it really wasn’t worth it for working with Goldilocks… she wasn’t worth it. I’d worked enough different types of nursing to get another job, and keep trying to make it work ).  I don’t even know how stable my internal thermostat will be when I’m at home.  Not working.  I tried to make it work at another job, with fans in my office, and trying to cool off when I felt I was getting overheated, but it simply didn’t work.

The many times I was sent to the ER before, and the first few years after, ending up on disability were a nightmare. I was labelled a ‘frequent flyer’- which is about the most hated label someone can get at an ER.  I was treated like some psycho-drug seeker.  I never asked for anything.  Most of the time, I never remembered getting there via the ambulances.  I wasn’t the one who ‘sent me’ there. My employer had, and I had no say in the matter. I understand they were covering their butts when I was unconscious, because something horrible could be happening- even though most of the time, cooler air and being horizontal were the only things to help.  It sucked.  The ER nurses, and a couple of the doctors, were nasty.  Just plain cruel sometimes.  One of the nice doctors even let my regular doctor know that he’d seen some inappropriate nastiness… but nobody did anything.  I had to just go to a different ER when I knew something was wrong, so I wasn’t blown off.

Real people with real disorders need Social Security (Disability) and Medicare, even though they haven’t hit retirement age.  It’s not a choice… it’s survival.  Without those ‘entitlements’ (that I paid into from the time I was able to work at 16 years old until literally falling over at work repeatedly at age 40), I’d be homeless or dead.  I hate needing these things, since the stereotype by people who don’t know people on disability is that of some bum, mooching off of the government.  I’d love to be working as a nurse again.  I loved being a working RN.  I still keep my license current, even though I’ll never be well enough to use it… but I still want to BE a nurse- not  ‘been’ a nurse.  I worked for that license.  And I loved what I did.

I may be on government assistance, but it’s not free.  It changed my income drastically, and allows me nothing ‘extra’.  I’m doing the best I can, and would encourage everyone to get disability insurance where they work. You never know when something will happen to you.  Nobody plans on becoming disabled.