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.     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, 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 out ‘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.   I was a kid, so not really expected to know any different.  People were simply more decent.  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 youth growing up 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”?   Though now, I’d guess that there is 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.

I was also a young nurse during the early years of the AIDS crisis.  I’d never known anybody who was gay (that I knew of at the time- later on I found out differently).   Even church hadn’t really mentioned homosexuality much.  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?

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, 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?   I also learned about the dangers of stereotyping when an entire heterosexual 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- 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 the contempt for those who need help?   There is an assumption that the majority of those on welfare are just bums. 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…  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?

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 bitching about Obama, and called Mrs. Obama the ‘n’ word repeatedly- from her holy 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 has it all ended up like this?   And why does it seem like people would rather be nasty, or not understand that it’s OK not to agree on everything, even if we believe in the same God?   That one baffles me.   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, but now seem to prefer to push people away.    Why is that so ‘bad’?   Why has it become so much more preferable to simply avoid humans?   Even (and sometimes especially) those who had been church ‘family’….  it all hurts my heart.  Mostly because they’re so unaware of how much it hurts to suddenly not be ‘good enough’ because I don’t mirror all of their rigid beliefs.

 

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The Divisiveness is Breaking My Heart…

I’m just blowing off steam.  I can’t remember a time when I felt so hopeless about the vast majority of  humanity.   No matter who says what, there are legions of people who are at the ready to deliberately be cruel and completely disinterested in the “idea” that those who believe as they do are just as passionate- and free to do so- as I am with my beliefs.  There is absolutely no reason or justification for name calling, belittlement, shaming, or anything else that just makes them sound  ‘holier than thou’ and pathetic  (whether or not they believe an God- or anything higher than themselves).   And yeah, I’m guilty.   I’m writing this from a place of pain- sometimes that comes across as anger – but mostly it just hurts.   The people I grew up with, especially from church, are no longer people I relate with in many areas, and that saddens me deeply.  I know that God knows my heart, and that I’d never opt to go against His will. I do question what humans have done to make Christianity so legalistic.

There is also  hypocrisy about many of  the ‘hot button’ issues.  In this post, I’m focusing on abortion- and being a Christian.  I can’t stand the idea of terminating a pregnancy.   BUT,  I understand why a woman would consider it, after being pregnant as a result of being raped in 1987.  I was very naive for a 23 year old and nearly immobilized by the options I had, for the situation I was in.  I couldn’t go the abortion route.  I just couldn’t do it, because my own values.     I never told  my mom about the pregnancy- the first question my mom asked me after I called to tell them about the rape was “Are you pregnant?”… like 6 hours after getting out of the ER, and 2 hours after leaving the police department, where I talked with the Sex Crimes detectives, in a hospital gown and gnarly raincoat from the hospital lost and found box.   Later, the dementia made it inappropriate to discuss it with my mom.  It would have confused her.   She had already told people I was moving back to my home to be a truck driver, because all she remembered about my moving back was that I was driving a U-Haul truck.

Adoption was a touchy subject as a viable option (though probably would have been the outcome had things not turned out as they did).    I’m an adoptee, and while I landed in a great home, there were always the questions about ‘why’ (I had some idea- young mom, couldn’t keep me… my birth mom and I  have a great relationship now), and the sense of “something” missing.  And what would I tell a kid later on in life, should he/she come looking for me, about the circumstances of their conception?  There is no way to make it sound like they were nothing more than a horrific, felonious mistake.  How does someone bring that into the world?   I realize that God can do a lot to help someone get through things (believe me, I prayed a LOT during the rape, and it was a huge source of comfort).  But what if the kid was not a person of faith, and had no belief system to get through something like that?  I would have done all I could to ease the blow- but I would not have lied.   Lies don’t ultimately soothe catastrophic pain.

I certainly didn’t want the kid, because of the ‘how do I explain the conception?’ issue, “who is my father?”,  and never wanting to have a negative bias towards the child in how I raised and treated it.  I didn’t want the reminders of that disgusting day every time I saw the kid’s face, though the child was never at fault.  I was frozen in terms of making decisions, but mercifully, God took care of it one morning, with some nasty cramping, and an unceremonious expulsion into the toilet.  I saw the placental side, freaked, and hit the flush handle.   I was about 12 weeks along.   When I told my dad about the pregnancy after I moved back to my hometown (16 years after the rape), he told me he would have sent me the money for an abortion… and he was a member of an evangelical church for about 60 years.   He understood the torment of that decision.  

I find using abortion as birth control out of laziness or not wanting to be inconvenienced by a child appalling and inexcusable (call that judgement if you want to- I call trivially expelling a pregnancy out of simple personal convenience horribly irresponsible).   There are plenty of good sources of birth control- the most reliable requiring a prescription (which makes Panned Parenthood a good source of medical care EXcluding abortions; they have doctors who will see a woman to do a physical  exam, do a PAP and screen for STDs,  take her medical history, and recommend the safest options to prevent pregnancy- you know… ‘planned’ ).   There are inexpensive prescription birth control pills out there, but they require a physician.  For those without a family doc, PP is a very good option.   I doubt that many right wing Christians will ever believe that (including family and longtime friends) and that’s fine.  Maybe some of them will open their homes and pay the medical bills for a woman facing an unplanned /unwanted pregnancy, and help place her child for adoption-  maybe keep it until the adoption agency and adoptive parents are sorted out.  That’d be great.  Unless someone will step up when they remove options, and offer their own solution on an active, personal level, I don’t think that they should have much say in what someone else does.

Condoms are good for a lot of ‘safe sex’ reasons… but they’re not %100 for birth control… still better than nothing- and anybody who has ‘frivolous sex’ with either multiple partners, or one with a known STD, is irresponsible if they don’t  keep a stash of more than they think they’ll ever need… At.  All. Times.   They are very good at preventing  many STDs (sexually transmitted diseases- some of which can be fatal, in a prolonged and nasty death, i.e. syphilis is easily treated early on, but can lead to dementia after decades with the  untreated disease).

The “morning after pill” is often misunderstood –  sometimes for deliberate political purposes,  to stoke the fires of misinformation.  The morning after pill DOES NOT TERMINATE pregnancy.  It prevents implantation.  There is no pregnancy without implantation.  There is no life without implantation.  Many women “miscarry” these unattached zygotes throughout their life, and never know that fertilization ever happened.  A fertilized zygote (with the potential to become a baby) is essentially nothing without implantation.

Bottom line:  Women are responsible for what goes on in/with/to their bodies when it comes to sexual activity and pregnancy.   Don’t do the “well, he should have brought the rubbers”.  Nonsense !!  If you’re having sex, you are the one who needs to be responsible for the consequences.   

About late term abortions…  I think this is often misunderstood as well.  There are times when ‘pre-term delivery’ (what it is called medically) to end the pregnancy is the only way to save the mother.  With neonatal intensive care being what it is now, there are  maximum efforts to resuscitate the baby and care for it with the hope that it will survive, and hopefully thrive.  Babies as early as 23 weeks are successfully cared for in NICUs. (I’ve heard of a few at 22 weeks, and seen 24 weekers with my own eyes)  That’s before the third trimester !  Pre-term deliveries are ONLY for medical emergencies.  They are not abortions.  (Could there be heinous individuals out there that do them?   Yeah- there are heinous individuals who do just about anything… but pre-term deliveries aren’t the same as abortions. Period.).   Look at the Duggars and their little Josie… they’re about as conservative as folks come- and they “got it” about the reasons for doing the pre-term delivery because of Mrs. Duggar having eclampsia, which is fatal if the pregnancy is not ended. Pre-term delivery IS the cure.  There was never any thought of Josie not getting care.    But the ‘far right’ loves to use inflammatory terms to garner support for candidates.  Unfortunately, inaccuracies abound, and that just fans the fire. Those that say that the mother dying is “God’s will”,  when there is a way to save, her baffle me… to me that is deliberately letting the mother die.  God doesn’t give us ways to take care of emergencies and then not expect/allow us to use them. Why lose two lives when you can save one pretty much for sure (nothing is every %100 in medicine), and probably both?

But bottom line about abortion, in my eyes?   It’s not my decision to make for someone else.  Legislating morality is muddling the religion and state line.  We are not a “Christian” country.  Many of the founding fathers did have a Christian background, but they were very careful to design our country to separate church and state to avoid legislating morality.   We are a country of freedom OF religion.  Once we impose Christian values into law, we open the doors to have parts of Sharia law, or Buddhist values, or whatever, into laws for everybody.   Laws don’t stop abortion.  And just because something is legal doesn’t mean I have to participate!   The government isn’t responsible for determining my decisions.  I have to answer for my own choices- NOBODY else’s.     Again- I don’t like the idea of termination a pregnancy at all.   But I’m not going to focus on people  I can’t control at the expense of ignoring things that could make a positive difference for more people (cue the “but the baby is a person” folks… yeah, I do believe that there is a blooming human in the uterus- and that’s why I wouldn’t choose to have an abortion myself). What is the benefit of being  judgmental over an issue that is between the woman,  HER conscience, and God?   I can’t live her life. But,  I’m also going to extend to her an ear to listen to her fears and conflicts- and gently talk to her about other options, helping in ways that I can.  And prayer is always going to be heard… God can direct the outcome.

So where do I find hypocrisy?  The same folks who are furiously self-righteous about being pro-life couldn’t care less about the health care availability for the “post-born”.    Jesus was ‘into’ taking care of folks medical issues.  You know- that whole “Great Physician” term?   He didn’t ask if people had a good job with adequate coverage to reimburse Him.   He didn’t ask if they were  purposely out of work just so they could stay home with bills piling up and no hope of a better life.  He didn’t ask if their medical needs were the reason they couldn’t find suitable work.  He didn’t deny ‘medicine’ because someone’s prescription drug plan didn’t cover His ‘medicine’.   He just healed them out of compassion.  Everybody remember that?   I know.  It’s not talked about much anymore.  Compassion isn’t a great political word, so it gets lost.

Matthew 25: 41-46   41“Then He will also say to those on His left, ‘Depart from Me, accursed ones, into the eternal fire which has been prepared for the devil and his angels; 42for I was hungry, and you gave Me nothing to eat; I was thirsty, and you gave Me nothing to drink; 43I was a stranger, and you did not invite Me in; naked, and you did not clothe Me; sick, and in prison, and you did not visit Me.’ 44“Then they themselves also will answer, ‘Lord, when did we see You hungry, or thirsty, or a stranger, or naked, or sick, or in prison, and did not take care of You?’ 45“Then He will answer them, ‘Truly I say to you, to the extent that you did not do it to one of the least of these, you did not do it to Me.’ 46“These will go away into eternal punishment, but the righteous into eternal life.”

Yes- those verses talk about visiting the sick, and not healing…  check this out:
Ezekiel 34: 11-16.    11“ ‘For this is what the Sovereign Lord says: I myself will search for my sheep and look after them. 12As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all the places where they were scattered on a day of clouds and darkness. 13I will bring them out from the nations and gather them from the countries, and I will bring them into their own land. I will pasture them on the mountains of Israel, in the ravines and in all the settlements in the land. 14I will tend them in a good pasture, and the mountain heights of Israel will be their grazing land. There they will lie down in good grazing land, and there they will feed in a rich pasture on the mountains of Israel. 15I myself will tend my sheep and have them lie down, declares the Sovereign Lord. 16I will search for the lost and bring back the strays. I will bind up the injured and strengthen the weak, but the sleek and the strong I will destroy. I will shepherd the flock with justice.”       It’s all about care, compassion, and bringing the ‘sheep’ together.  This is talking specifically about Israel- but I can’t imaging God not wanting those who love His Son to be treated differently.  And He will strengthen the weak !  He’ll help the injured.  Because of love for His people.  In the Old Testament that was directed at the Jewish people.  In the New Testament, and after someone makes the choice to believe that Jesus is their Lord and Savior, He extends that to us as Christians as well.

There are SO many other things that are saddening me these days- but this is one of the things that separates me from the people I grew up with.  That’s hard, but I’m not going to simply follow the herd when I have strong feelings and thoughts of my own, based in compassion.  I became a nurse to help people.  I miss that.   It’s hard to feel like an outcast- and I don’t anticipate anybody being willing to have a discussion – not to change minds, but simply be heard and maybe even understand a little of where I’m coming from.  But I know God does.  People who aren’t part of the community I grew up with (at church) understand… but within that church group, I feel like something they’d just as soon throw out with the trash. And that hurts.  Lots of talk.  No action.

But, whatever.  I’m rapidly losing interest with humans in general.  It’s “safer” to write here, or just keep the front door locked, and screen calls.   But I won’t lie.  I’d love to hear someone with the same spiritual background tell me that they ‘get it’.   That they understand.  And that I’m not “bad”.    I realize that in the grand scheme of things, the opinion of a human is pretty meaningless.  But it would still be nice to be understood.  I do find intense comfort in knowing that God hears my cries, and knows my heart.   ❤

 

The Wacky World of Peripheral Neuropathy and Methadone

This hasn’t been a good weekend.  I slept most of January 1, 2016  (Hey, welcome new year !!), and the next two days haven’t been anything to cheer about (although I am alive, so that gets points).  This peripheral neuropathy is kicking my butt, and this morning it felt like a literal kick just to the right of my butt cheek crack. It is like a deep bruising- definitely a muscle type pain… not the weird ‘nerve’ pain of burning, numbness, tingling, etc.   The burning pain in both outer thighs is also bad.  Generally, the burning pain has been when I’m in bed, but today it has decided to join me until ?  But when I touch those areas on my thighs, it feels numb.  And then gentle contact with those areas brings a type of pain that is disproportionate to the degree of the touch.   When I say ‘burning pain’, I’m not talking about sunburn pain… I’m talking about hot oil type pain, over an area the size of the sides of both thighs.  The first time it happened, I froze with confusion.   Chemo and diabetes can have some gnarly complications.

I know I have a lot to be thankful for.  Since getting the CPAP for sleep apnea last year (close to this time), my head feels much more clear, and the morning headaches have been reduced by about %99- that  is HUGE !!  I’m still tired, but not nearly as wiped out as I had been post chemo.  Chemo fatigue is indescribable.  I’ve had fibromyalgia fatigue since the late 1990s, and it’s bad…. but chemo fatigue can be immobilizing.  Just getting up out of the TV chair to go to bed was overwhelming.  Fibro-fatigue is bad- but at some point, it eases up a bit to take care of basic daily activities enough to function, even if minimally.   (I live alone, so nobody to ask to do something on the fly…. there are a couple of friends around here who are so willing to help, but they have jobs and lives, so it can be hard to schedule a good time for both of us- but they are so willing, which is great.  My 83 year old dad is around, but I want him to have a life… I do ask him for help at times, but I don’t want to take advantage of him or anybody else). 

I know I need to contact the pain doc again.   This next two weeks, I have lab work, a follow-up with my endocrinologist, a routine visit with my neurologist, and the endoscopy with the ultrasound and biopsy of the junction between my stomach and lower esophageal sphincter for the “clinically significant lesion” that was found during the esophageal manometry to clarify the spasms in my esophagus that make swallowing so difficult.  Sometime in all of that, I need to see the pain guy.   And the CT of my pelvic area.  Can’t forget that.  I actually need to get that done before the pain guy, since I don’t want to do any spinal cord implants (to sort of confuse my brain about pain perception in my lower spine area) until I’m sure that nothing lurks in my pelvis.  SO many symptoms are common to a bunch of things, and I don’t want to have a metal implant (kind of like a pacemaker sized thingie) put in if something else is going on.

In the meantime, I’ve been prescribed methadone (t’s not just for getting heroin users off of heroin and on to something that has no ‘buzz’- it is a legit pain med), and have already been on ‘adjunct’ meds for other disorders that also help with pain management, like gabapentin, carbamazepine, clonazepam, cyclobenzaprine, and topical things like Icy Hot ‘sticks’, Salonpas patches, and sometimes just lying still on my uber comfortable bed, with my CPAP machine.

About the methadone.   I don’t like the stuff.  It does work for pain (same category as morphine)…. but I worked drug and alcohol rehab for about two and a half years, and from an objective point of view as a detox RN, it is the worst substance for detoxing.   I’m not concerned about addiction for myself.  I generally have a lot of pain meds left over, to the point of throwing them away because they’ve been in my drawer for so long.   I don’t mess with the instructions or dosing set by my doctor (who is board certified in anesthesia and pain management…. not a doc-in-a-box who only accepts cash, and has a line around the block).   I get no emotional ‘perk’ from the stuff.  But with any controlled substance (as well as things like caffeine, nicotine, etc), there can be physical tolerance and dependence.  That gives me the willies, which I guess isn’t a bad thing, but it does make it hard to take the methadone as often as I can (three times a day), even when I’ve got pain that ‘justifies’ taking the stuff.  It’s common knowledge that pain is easier to manage when it’s treated before it gets really bad… but methadone is no joke.  I have a lot of conflicting feelings about taking it.  And yet, the pain I have now is interfering with just moving around my apartment.   I need pain relief.  I’ve discussed my fears with my pain doc… and he reassures me that he will never leave me hanging as far as dealing with physical tolerance.

My pain doc told me that if the methadone doesn’t help now, the spinal cord implant is the next thing he would recommend.  I trust this guy, mostly because he is not a pill pusher.  He does prescribe them, but he also does nerve block injections with steroids and numbing meds, and options like TENS units (little electrodes on the outside of the body to help ‘trick’ the brain about pain perception).  He has rules about how things work at his office (no dosage adjustments over the phone, no messing with doses/frequency without his approval, random urine drug screens, calls for refills have to be on certain days, etc.).  If he feels people are not following his rules, they’re gone.  No jerking around with pain meds.  I respect that a LOT.

I also consider my age.  I’m 52 years old, and might have another 25 years, give or take, to cope with the neuropathy (and other) pain.  It concerns me to take strong stuff now, knowing I have an unknown number of years to live with this crazy body and the weirdness going on with it.  And yet I hurt.  I can’t take NSAIDs (ibuprofen, naproxen, etc) because of chronic gastritis.  I deserve a decent quality of life with less pain, and if that means pain meds, I need to accept that.  The doc can only help me if I am willing to follow his instructions with the meds that scare me.  I don’t expect to be pain free- that is totally unrealistic.  But less pain would be good.  I’ve had daily pain since the mid 1990s… it’s getting worse, and from different sources.    I want to be able to have some times to enjoy time away from my apartment, and hopefully with friends (those I’ve known for a while, and those I’m meeting at the Bible study).

I thank God for the doctors I have.  They listen, do the proper testing to find out what is going on, and in the case of my primary doc, orders things like my wheelchair to help me be as ‘able’ as possible to get around outside of my apartment.  That has been huge.  Going to the weekly women’s Bible study has been a wonderful way to get away, be around others, and meet people !  I’ve been isolated for the most  part for nearly 12 years. It’s been SO good to be around others, and hopefully be a source of positive interaction for them.

 

 

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 !  😉

 

 

Sometimes Being Homebound and Isolated is Really Hard

Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate.  Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days…. she had been over a few weeks earlier talking about limited time. Maybe she know something was up, or was just being realistic that at 89 years old, she wanted to get things in order.   We had a really nice visit that I’m so thankful for.  The one who had the 9 month battle with colon cancer is a cousin I had a lot of  phone and e-mail contact with during her horrific struggle.  The other was my dad’s lady friend from church;she and  his first cousin (with the aortic dissection) had services last week.  I wasn’t able to go to either, but did at least meet the lady friend’s family, who I’d heard about for years, and felt a need to pay respects to them; we’d all heard about each other for years. I couldn’t stay long, but at least I popped in after the service for a few minutes.  I will miss them especially during the holidays, but also in general, as they were either family, or just about, as she and dad were buddies for church dinners, going out with friends, etc.

Overall, I really do realize how fortunate I am, but I don’t have many perky days when all is sunny and wonderful. There are some times when I just get overwhelmed when I think about what I used to be like.  Other days, I do my best to get by, and I do still have a lot that I enjoy from home. I still get to help out family and friends with medical  questions/translations- and I’m very glad to do that.  It helps me feel useful in some way.  And I get rather nostalgic about the days when I was working 3 12-hour shifts a week as a charge nurse in some sort of facility (hospital, drug/alcohol rehab, adolescent psych), or the Monday-Friday desk jobs entering assessment data into the computer for Medicare reimbursement and/or care planning for skilled nursing facilities.  I also did some stints on neuro floors, head injury rehab, and pediatrics- so a greatly varied career that I miss.  A great thing about nursing, especially in Central, rural Texas between 1985 – 2002, is that when I’d get bored with something, I had no problem finding another job within days.  Sometimes the offers were waiting for me on my answering machine when I got home from the interview.  Being an ADN, and not having a 4-year degree was never an issue, either as a staff nurse, charge nurse, weekend supervisor (only RN in the building/facility), or department head.  I was lucky to graduate from nursing school in 1985 when we were expected to know how to do procedures and skills, or we didn’t graduate.

Then came disability in 2004.  I fought through 8 years (starting in Texas) of trying different medications to regulate the fainting and weird episodes where I turn beet red, then a bluish red, before becoming pale and cold like a corpse. For eight years, I muddled through, and even had several decent years after the neurologist down there wanted to try an off-label medication.  By the time I was told I was no longer OK to work (by my boss in IL in 2004), it crushed me.  My identity had always been as an RN.  I didn’t have a husband or kids, so no other roles.  My relationships were all with co-workers in Texas ( even though I’d moved back to Illinois, where I was basically thrown away- nobody returned calls, and one former coworker went out of her way to avoid me at the grocery store).  I’d gotten sick- I hadn’t embezzled anything !  I guess it’s a Yankee thing. :/

That started some very chaotic years of figuring out what meds would help with the worsening symptoms (fainting more often, with some injuries including a concussion, and torn meniscus on my right knee requiring a knee replacement, some very strange medication interactions that caused a small stroke, many blood clots in my right lung, and ultimately leukemia (AML, subtype 3, or APL) which required chemo that worsened the autonomic disorder with thigh atrophy and increased sensitivity to heat).  I was a ‘regular’ at one of the ERs early on, and they treated me like trash.  Had I not gone to a decent ER with the blood clots in my lungs, I likely would have died – they were numerous in all three lobes of my right lung and pulmonary artery, and in various acute, subacute, and chronic stages.  The apex of my heart had pressure against it from my lung pushing into it.  It was bad. I only went to the hospital because I thought I was having a heart attack.

I’ve been essentially homebound for ten years.  I’m not sure that many people really understand what that means when “friends” here (coworkers) disappeared as soon as I left the parking lot on my last day.  I do have my dad, and a couple of friends here- one in particular makes an effort to come over periodically, and has done a LOT of work helping me get things organized so that I can get “stuff” minimized around here. She has been incredibly helpful once we found each other again on FB a few years ago.  I have been invited to family holiday parties- which I can attend one of, after everyone eats, since hot food in close proximity to body heat of other people is a problem- so I go when I’m less likely to stick out as being totally weird.  I really like that family bunch, and I hope I don’t come across as not liking them.  I just can’t tolerate a room over 66 degrees.

There are days when I don’t hear another human voice other than my dad (who is 82 and healthy, so I’m very thankful for that). We try to do daily “attendance” checks with each other, and he is really a huge asset in my life for many reasons… he always has my back.  I know he will never give me bad advice.   I might not see another human more than once a week (again, dad) for a few weeks at a time.  The phone rarely rings… usually it’s dad, my birth mom, or a reminder for  a doctors’ appointment or test (this week it’s an abdominal/pelvic CT for some intense bloating likely related to the autonomic problem).  Facebook is my primary form of contact, and I’m incredibly grateful for that; prior to getting this laptop from my birth mom and cousin, I was even more alone… now I can at least keep up with people I’ve known for years, whether from work, family, or childhood.   I challenge anyone to unplug the phone, have nobody show up at their door, and not hear another live voice in person for days (and occasionally weeks) at a time. It takes getting used to- and even now, it’s still hard.

I miss seeing co-workers and patients.  I miss being able to just go out and do something social without having to deal with the logistics of cooling vest equipment, distance from home, how I’m going to get there, can I leave if I need to, etc.  There are no ‘going out to lunch’ days (who would I go with?).  My dad is the one I go places with on the days when I can go (and I know I’m the most undependable ‘date’ with frequent last minute cancellations because of symptoms of some sort).  He knows that when my cheeks turn a deep bluish-red that it’s time to go.  And he’s always willing to take me anywhere.

People don’t understand that I can’t unload the dishwasher and fold laundry in the same day, or I end up with spasms from the base of my skull to my lower back, and am useless for a day or two.  Chronic pain isn’t ‘seen’.  Fibromyalgia and degenerative disc disease are chronic and  the DDD, will get worse (degenerative is a clue)- so I pace what I do as much as possible.  I miss the days when I’d set my mind to doing something around my apartment, and not stop until it was done.  That’s long gone.  I ‘look OK’, so I’m not sure people understand that I really am doing the best I can.  I live independently (getting many things delivered to my apartment from Schwan’s- frozen foods, Amazon, and Walmart).  I go to the store about once a month… maybe twice if it’s a good week about halfway between disability checks.   I still want to do as much as I can myself, so I don’t lose any more muscle mass.  The initial chemo took up about 20 pounds of muscle, and then the neuropathy in my thighs took much more – while I gained weight on chemo (not easy for my head to deal with, or to get rid of the poundage).

I’ve written about the expenses of Medicare and medications not covered in other posts. Buying insulin from a part D plan guarantees that anyone on it will go into the dreaded ‘donut hole’ where meds are NOT covered by the Medicare drug plans.  Most diabetics are on several medications.  The donut hole is dangerous.   The ‘good’ insulin is upwards of $200 per vial….between the two types of insulin I use , if I got it from the part D company, that would be $600 a month just for that- minimum… Thank God for the  cheap stuff from Walmart; I’d be sunk without it.  I don’t understand why insulin (the better stuff ) – a drug that is absolutely necessary for many diabetics- is so  unattainable.   I worry about this sort of stuff…

But mostly, I miss the things that I used to take for granted… seeing coworkers, having daily contact with other humans, having a purpose that felt like ‘me’ (being an RN), and not having to plan for every contingency every time I leave the apartment, even if it’s only for an hour.   My short term memory and word-finding are still not back to normal after chemo.   Going to the store for fresh produce every week has been long gone.  I might figure out something with dad, to go with him a couple of times  a week to get fresh fruit and veggies.

I really do have a LOT to be thankful for.  I have survived a lot.  During my 55 year old cousin’s final weeks, she weakly asked why I was allowed to live and she wasn’t- not in a nasty way, but in a tone that just sounded like she was trying to make sense of things.   I don’t know.  I know I must have some reason to still be here.  I hope I can make a difference somehow.  The blog helps… I keep track of my stats, and more than 100 countries have hit more than 16, 000 times.  At least people know I’m still here… that and Facebook. And my dad and a couple of people I see every month or two.  That they take time out of their busy lives (and they are busy !!) means a lot.

I’ve got God, my dad, my birth mom, folks on FB, and my dog- who is my main companion and pretty good at it 🙂   So, even though I miss what my life was, I’m at least alive, and still able to live alone, and figure out how to get things I need.   I truly am thankful for that. I know that there are others out there who struggle a lot more.  I remember those people I used to take care of that were never going to live on their own again.  I don’t know where the dysautonomia, diabetes, degenerative disc disease, degenerative  joint disease, or lung scars from the clots are going to lead me… but I’m sure I’ll figure it out.  I always seem to land on my feet 😉

Honoring Abusive Parents… Does God Want Us To Throw Ourselves Under Their Toxic Bus?

I pray that God gives me wisdom especially as I write this post…

I’m very fortunate to have a dad who has my back, is fun to be around, and with whom I can talk about anything.  Having a relationship with him as an adult has been a lot of fun.    If/when he gets upset about something, he says what he says, and it’s over.  He doesn’t hold grudges, and generally forgets he was ever upset.  He doesn’t hold my emotions hostage. He doesn’t guilt me into anything.  I do often feel badly that I can’t spend more time doing things away from home, due to the dysautonomia, but he understands that I will do things when I can- and we enjoy those times.  Even when I was a kid, he never did anything that wasn’t in my best interest.  I didn’t always like discipline, but it was swift, to the point, and never left a feeling of shame.

My mom wasn’t so pleasant when I was growing up.  She wasn’t really ‘mean’, but she was broken. There were some things that were done that were most decidedly unpleasant, and if I had kids, I would not have repeated them.  But mostly she was broken.  She had some intense losses (two newborn sons, two years apart, just three years before adopting me). She was terrified of doing something wrong, and of losing me, so some of her ability to ‘attach’ or bond was damaged.  It wasn’t personal, though as a child, it felt that way.

It wasn’t until my mid 30s that I figured out that all of that was her ‘stuff’.  It wasn’t about me- even though it had a huge impact on me. Her mom was orphaned at the age of six, and had her own issues with attachment (she discussed this with me several times), and she deliberately didn’t allow for much closeness, so I wonder if my mom had any frame of reference for how to parent.  No kid comes with instructions, and not all parents have much insight into their own ‘stuff’.  I do know my mom loved me, and she did many things with and for me… but verbally, there wasn’t much clue that she liked me.   Basically, she did the best she could, with her own ‘stuff’ coloring her emotions and interactions.  I gained a lot of compassion and love for her, by understanding that whatever was going on wasn’t about me.

Being a Christian, it can be very frustrating and confusing to deal with abusive/neglectful/hurtful parents when so much is said about honoring one’s parents.  But does that include overtly abusive parents?  From what I’ve found, the answer is both yes and no…  We aren’t expected to obey demands that go against what God’s Will is for us (He doesn’t want us to be continuously damaged and tormented).  But there is a difference between our expectations as children and that of the adult child/parent relationship.   If a parent is acting within God’s expectations of a solid, loving parent, there probably isn’t an issue about honor, respect, and love.  But for the parent who isn’t able to understand that demeaning, demanding, and destroying their children’s emotions, and the relationship in general, I don’t believe things are so clear.   That abusiveness isn’t from God’s instructions on how to parent (Ephesians 6:2).

Here are links that help with Bible verses, regarding abusive parents, and adult children (remember, that these apply to the abusers as well as anyone who is a parent):

http://www.luke173ministries.org/537996

http://bible.knowing-jesus.com/topics/Abusive-Parents

http://www.gotquestions.org/honor-abusive-parents.html

Looking at the word ‘honor’, here is what Merriam-Webster has to say :

1. respect that is given to someone who is admired

2. good reputation; good quality or character as judged by other people.

3.  high moral standards of behavior

There’s nothing about throwing ourselves under the toxic family bus.

 

www.merriam-webster.com/dictionary/honor 

When there is a toxic relationship, we can’t control what the other person does.  We can only manage our own  responses and behaviors, and decide how honorable we want to be.   God will take care of the ultimate judgement on hurtful parents.  I don’t think we’re expected to put ourselves in harms way with abusive parents.  I do think we can protect ourselves, even via distance and refusing to participate in an abusive parents’ tirades and ongoing unrealistic demands, and outright lies.   Illness and stress are not excuses for abuse.  Even those with dementia are given boundaries.  Those with sound minds are entirely accountable.  If they have such severe reactions to something, they need a professional to help them- not unload in unhealthy ways on their family.

But what CAN we do?  We can focus on our own relationship with Christ. It’s hard to have a full-on relationship with our Lord when we are being torn down by an earthy parent.  We need to give that relationship to God.  We can forgive.  Forgiveness doesn’t mean condoning someone’s behavior- but it is an act of obedience to God.  It’s a freeing up of mental space for more positive content. It relates to our relationship with God… much more so than with humans  (Matthew 7 is good for this). We can show compassion without being subjected to continued and repeated abuse.  Sometimes people have to be loved from a distance.  Sometimes we have to just do what we can, and let the abuser stew in their own anger.

If a parent is not showing the love of God to their own kids,  there is something wrong with the parent (intentional or otherwise).  I’m not saying they have to be perfect, that’s impossible- but (if they claim to be a Christian) they should be compassionate, loving, forgiving, not demanding, not haughty, etc (I Corinthians 13).  LOVE isn’t rude, not self-seeking, isn’t easily angered, keeps no records of wrongs, isn’t proud, is kind, and is patient…  Parents are supposed to show their children those qualities.   And adult children can demonstrate these TO an abusive parent, but still not be subjected to 24/7 abuse.  Interactions can be brief, but still show love as God describes it (sometimes less is more).  Sometimes the honorable part has to be how we interact- not how we hope they interact with us.  My mom ended up with dementia before I was able to see her as someone who needed compassion; there was no reciprocation- but that was OK; I’d fixed my own perspective when I figured out it wasn’t really about me.  Not all abusive parents fit into that category, but we can decide how we want to be viewed in how we interact… we decide OUR legacy- not that of the parent.  The parent will have to answer to God one day, as will we- and He knows our hearts.  He knows about the hurt and damage done to the tender hearts we had as kids… and He can give us strength and wisdom to do what’s right as adults.

The ones who abuse are the ones with the problem, and in my opinion, it’s more of a spiritual and unresolved emotional issues that can’t be fixed until the person has some reason to change, and make amends.  It’s not about the kids (adult or otherwise).  It causes damage in the relationship, but it’s not ‘personal’. All anyone can do in an adult child/parent relationship is show the parent some healthy boundaries,  pray for them, and  be kind without being a victim again.  Sometimes distance is needed because the situation is so toxic.  I don’t think that goes against the Bible.  I don’t think we’re supposed to be slaves or sacrifices for the  abuser.  We’re to be ambassadors for Christ- with unbroken spirits.  And I don’t think that guilt and shame are ever part of a healthy relationship.

Our ultimate responsibility is to God, and following what He wants for us (Jeremiah 29:11)…. if an earthly parent isn’t following that same concept, they are not honor-able.

 

 

Just So Lousy… Death Is An Ugly Business

I’ve been looking back on the last year and a half, and it has become mind-boggling how many of my friends (or their close family members), family, former co-workers, and people who were part of my everyday life are now dead.  I don’t really even know where to start.

Most people know that my cousin died on March 2, 2014, so almost two weeks (tomorrow).  She had a  horrendous fight with neuroendocrine colon cancer, with every complication known to nurse-kind.  I was her ‘go to’ person (as she described me) for bouncing around ideas of what might be going on, and getting my take on what the symptoms she was having could mean.  Being eighty miles away didn’t help, but I did what I could, and my standard line was “you probably need to go to the ER” or “It would be a good idea to call your doctor now and let him/her know what’s going on.”  I was glad to be of some use- and it was also hard to know she was going through so much.

During the last twelve to eighteen months, I’ve looked up former coworkers to see if we could reconnect, and ended up finding their obituaries.   I’ve also been informed about friends’ family members- and in the case of two particular children, it was really so incredibly sad.  One died at age eleven from the same leukemia I had- less than a day after being diagnosed. Another child (8 years old) in that same extended family died from brain cancer, less than a year after she was diagnosed.  She had the best treatment there is (St. Jude’s), and she still lost the fight.  Even though their names are available on public ‘search’ links, I won’t post their names because they were minors- and I don’t have the family’s permission to name them.  I remember some kids who died when I was a kid (friend’s brother had a brain hemorrhage, kid at school had a brain tumor, skating coach’s six kids were murdered by her husband)… but as an adult, with the experience of  pediatric nursing-  hearing the screams of the parents when an infant or child died back in the Pediatric Intensive Care Unit isn’t something I’ll ever forget.  It was the most guttural, primal PAINFUL sound I think I’ve ever heard.

I am going to name a few of  the people I’ve lost in the past few years, as I have nothing but good to say about them- and they too are easily found when looking their names up.  I hadn’t expected to find their obituaries, but ….

Madeline Spenrath, R.N. was one of my nursing supervisors in Kerrville, TX.  She was one of the best supervisors I ever had anywhere.  She maintained a bit of a strict ‘ship’…but she had a heart of gold.   I reconnected with  her after her breast cancer was found, and after she’d had to have her right hip removed from the socket (along with the whole leg), as the cancer had spread.  It continued to spread, and she eventually died at one of the nursing homes I used to work at (it helped to know she was getting good care).   Madeline was ‘good people’.   She was down to earth, very knowledgable, and could get an IV into a mosquito in motion.  She had amazing BBQs for the night shift crowd every year for a long time- those were great.  She had someone tend the pit, and everyone brought a dish to pass.  She was all about team work, and it was obvious she was an amazing team leader- and player. She wasn’t above getting her hands dirty.

I had started looking for the mom and godfather of a baby I took care of for most of the first 18 months of his life when his mom worked.  I worked 2-12 hour night shifts on the weekends, and his mom worked 3-11 shifts Monday through Friday, so it was perfect.  The first 3-4 months I had him 5 days a week (had the car seat so I could get errands done), then cut back to 3 days a week so I had some time off.  But he was my little angel bug.  He’s about 25 years old now- last time I saw him he was twelve !   Anyway, when I looked up Jae Arkeen and Dana Coy, I found their obituaries.  It stunned me when I later found out that Jae had relapsed into addiction, and had elevated levels of drugs in his system that he wouldn’t have touched when I knew him.  That broke my heart. He had been SO solid in recovery.  It reinforced that ANYONE can relapse and die with drugs and alcohol.  I really don’t think he’d mind me saying that, because he’d know it could possibly reach someone who is rocky in recovery, thinking they’re invincible with their 12-Step Program.  He was the kindest, most caring guy, and thought that his godson hung the moon. He was so funny, and great to work with.  He later worked in a very intense area of counseling, and I’m sure that, along with what seems like some serious instability in his addiction recovery, was very difficult.  I had contact with  someone who had been very close to him (that I didn’t know), via e-mail, and she let me know what happened.  While it was horribly sad, there was some partial comfort in knowing it was fast- at least at the end.  I’m sure there were some painful times emotionally for him to get to that place.  I worked with him on an adolescent psych unit… he was great with those kids before he moved into a much more specialized area that is polarizing, and very difficult. He was outstanding with those kids.

Dana Coy (RN in several psych units over the years) had a very brief obituary.  brief battle with cancer.  She had been divorced from her adopted-at- birth son’s dad for years, though the son kept in contact with him- so after losing two people who were so close, I’m sure it helped to have his dad there with a long history together.  Dana and I didn’t work shifts together… but we saw each other nearly every day when she dropped the baby off (starting at 9 days old since he was adopted, so not much time off for ‘maternity’ leave), and when she’d pick him up, or I’d take him to work to do a ‘hand off’ if I was working an 11-7 during the week.  I liked Dana.  She was very easy to interact with when I took care of her son… not high strung about things, and also appreciative of having an R.N. for a regular babysitter.   I loved the baby as if he were my own.  She knew that- and also knew that I knew my boundaries as ‘the babysitter’… I always asked her before doing anything with him.  Whether it was a trip to the store, or just going to the apartment complex swimming pool, I made sure she was OK with it.

Another shock was finding out that Tricia Heath, the administrator (and an RN) at a really nice nursing home I worked at in Round Rock, TX back in the early ’90s had died. She was so supportive when I was dealing  some personal things, and was just a kind, compassionate person, who wanted the residents in that facility to have the best possible life they could in an institution.   I really cared about her, and when she and her family moved to Memphis, TN for a job her husband was offered, it was so sad to see her go.  As often happens, people say they’ll keep in touch once they get settled, and then life happens, and they’re in the wind.  Back then, there were no internet search engines for finding people, and it was all basically just luck if phone numbers were in the 411 for a particular city.  Tricia was a great administrator- she kept the place in line for state requirements, but she also had a heart.  I had a lot of respect for her.

Madeline, Jae, Dana, Tricia, and Kathy were parts of my life for a long time. Madeline, Jae, Dana, and Tricia were people I saw every day I worked, depending on the schedule I was on. I wonder how all of their families are doing.  When Facebook and other internet ‘reconnection’ things were available, it was like we’d never been away from each other. I got to catch up with Madeline the most… Jae, only once with a postcard from somewhere, and Dana only briefly when her son was twelve, and I was in Austin for a week for my work; they came up to the hotel to see me one evening when there weren’t any seminars scheduled. But it was great to see her, and how much M had grown !      Tricia was harder to track down since she’d moved back to TX.   I could have paid to find out where she was, but there was information on that thing that was really too invasive for just trying to send a ‘hi, how are ya?” kind of note.  And then they were gone.

I stopped looking for people.  I sort of don’t want to know who else is gone. If more people pop up via Facebook, or whatever, that’s great.  But I think I’m done looking.   It hurts.