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.

Blowing Off Steam About Love and Respect

I need to blow off some steam. Some stuff has been bugging me for a while.  And in some ways, even writing this is making me guilty of what I am so deeply saddened and frustrated by.  For that, I ask God to search my heart for my core beliefs and motives,  that can be so hard to describe in words.  I hope I make sense with this and come from a place that pleases Him.

I’m a fairly conservative Christian,  though I don’t consider myself to be an ‘extremist’ – I don’t believe extremism is beneficial for anything. (Matthew 6:1…”Be careful not to do your ‘acts of righteousness’ before men, to be seen by them. If you do, you will have no reward from your Father in Heaven.”… ‘Appearances’, and not compassion, scream hypocrisy, and push people away from us- and the chance to share Jesus….Matthew 5:22 talks about anger, and the emotions that destroy relationships and spirituality – we’re to be in control of our actions, but our thoughts can also degrade our relationships spiritually… Life Application Bible notes).

It’s one thing to have a firm belief in God and His Word, and quite another to use it as a weapon against those who are either struggling, or have different beliefs- or are not Believers at all.   Nothing about God is  a weapon for destruction.  We’re instructed that our relationship with God is to be used for GOOD, not divisiveness.  Divisiveness is a tool of Satan.  James 3:5 “Likewise, consider the tongue as a small part of the body, but it makes great boasts. Consider what a great forest is set on fire by a small spark. The tongue is also a fire, a world of evil among the parts of the body.  It corrupts the whole person, sets the whole course of his life on fire, and is itself set on fire by hell.”  And it can be incredibly difficult to figure out how to love the sinner and hate the sin, and do it from a place of love and compassion for the person, without being judgmental.

Every week there is something else in the media (not from God) that turns on the “judgement switch” of a lot of Christians… and that’s not our job as Christians. I see it in people I know,  people I don’t know in articles and interviews, and I see it in myself at times, and must stop and ask God to help me deal with the situation in a way that pleases Him. I’m not always very good at that.  Every time ‘WE’ judge ‘the other side’, we do *exactly* what we accuse ‘them’ of doing.  I’m so tired of it!  I strongly believe in having a solid core belief system, and mine happens to be that of a conservative Christian. My goal from my heart is that  I become stronger with the  characteristics of a Biblical Christian (not humanly manufactured judgement spewers).   Living the Fruit of the Spirit is my daily goal (and I fail regularly)  😦  … Galatians 5:22… “But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. Against such things there is no law.”  When I disagree with someone, or feel I’m not being heard or treated fairly, those are the responses I am to have.  And it ain’t easy!

I have enough of my own character defects to work on to have ANY right to call out someone else.  Even if something is in the Bible as sin (and we are ALL sinners), I can only live and grow my own relationship with Jesus.  Even Jesus didn’t come to point fingers and judge- He came to save us; judgement will come at its due time, only known by God.   If Christians are so busy worrying about the actions/thoughts/beliefs of someone else, who is left to love them to the Lord?  Matthew 7 is a great chapter on judgement and forgiveness.

We have all sinned (Romans 3:23).  There is no hierarchy of sin.    I believe we  ALL need Jesus- every single day for our OWN spiritual lives. I understand that not everybody believes that- and God gave us free will to believe or not, so who am I to demand more than God? He wants genuine believers- not robotic, loveless stalkers!   We are commanded to go into the world and spread the word of God… How can we do that if we’re so busy condemning others?  Romans 12:18… “If it is possible, as far as it depends on you, live at peace with everyone.”   Salvation, and a relationship with God is a choice- we can’t earn it, we can’t lose it… but we must sincerely desire and choose it.  And I can only choose for myself.

Does that mean we condone everything? Of course not !  But we aren’t responsible for the actions and beliefs of others- and if we’re so busy being pious and judgmental, who is left to share the Gospel?  We are known by our actions first.  And there are many Christians who send non-believers running for the hills from the hypocrisy and absolute intolerance of various groups of people, or those who even believe differently. Some send ME running for the ‘hills’, and we’re supposed to believe the same thing !
There is not one person on this planet who can truly know what is in the heart of someone else- their struggles, pain, frustrations, BELIEFS, etc.  Christians are generally taught to appear like everything is wonderful- which is VERY hard to do 24/7.  And it’s disingenuous.  God gave us emotions.  But we do have to be careful about not directing them AT others, and instead using them to encourage and uplift others.   ‘Loathing’ is not from God.  Constant mockery, negative comments, and complaining are in direct contrast to what we are told to do in Philippians 2: 14-16… “Do everything without complaining or arguing, so that you may become blameless and pure, children of God , without fault in a crooked and depraved generation, in which you shine like stars in the universe as you hold out the Word of Life- in order that I may boast on the day of Christ that I did not run or labor for nothing.”  That’s hard !  But it lets me know that getting involved in negative ‘conversations’ isn’t anything I’m doing to praise God.  It’s purely self-serving when it’s not done out of love, and to offer something positive and encouraging.
I believe that there are a lot of Christians who truly love the Lord, and are still struggling with various issues.  When I worked drug and alcohol rehab, we saw a LOT of Christians… and had a special sub-group of recovery options for them in addition to the traditional  12-step treatment (which is completely spiritually based, and strongly reflective of the Sermon on The Mount).  Christians are not immune from continuing to (or starting another)  sin; for some it’s easier than other to ‘reform’ and/or recover. Some have condemned themselves much more than anybody else could- and are afraid God couldn’t possibly want anything to do with them. (So let’s throw some disdain their way, eh?) And some have lived their entire lives believing that they are guilty of something that was done TO them.
I’m so glad that the  God I know is more loving and forgiving than many of my fellow Christians- known personally or not. And HE knows MY heart!  He has access to the secret corners of my being, and loves me anyway!     Other humans only know what they assume- and that is dangerous ground for basing a relationship (or opinion) with anybody.   John 8: 2-11 is an outstanding example of how Jesus dealt with a woman accused of sexual sins.  He came from a place of love.
I spent many years with severe eating disorders –  clear abuse of the body God gave me, and where the Bible says the Holy Spirit dwells in Christians.  I was living in a state of daily sin by focusing on the flesh– and yet I still loved God deeply, and dealt with the shame of not living fully for Him when I was focused on something so destructive, and felt so stuck.  It’s painful to see Christians assume that because someone is ‘pro’ this or that, or in some sort of addiction (food, drugs, alcohol, etc.)  that they aren’t Believers.  “Let he who is without sin cast the first stone”… remember that one?   I’ve met a lot of Christian addicts (recovering, and  just going through detox)… some of the most solid Christians I’ve ever met.   Being a Christian never removes the fact that we’re still human.  We fail. We get up. We move on. And sometimes (a lot of times) we fail again, with the assurance of a loving God catching us in His arms.
Some (a lot of ? ) folks do appear to be clearly anti-Christian.  There’s someone on the news, other TV shows, radio, Facebook, Twitter, etc.  pretty much daily that come  only to verbally mock and shun Christians.  (one program last night had me fairly heated !). God has that covered !  We’ve been told about those who persecute Christians- it’s been going on for a couple of thousands of years now !   And it’s not our fight.  God will take care of those who harass His Children in due time.  I find comfort in that- I don’t have to waste time being angry or even hateful !  I can try and find things to be thankful for.  We’re instructed to be thankful in ALL things.  We’re instructed to have a very specific mindset about our ‘enemies’. ****  It is so much more freeing to not be worn down by things that I have no control over, that will be dealt with by God in HIS timing, and to look at the wonderful things I’ve been blessed with- however great or small… they are more uplifting than the negative people and situations :
****1 Peter 3:9…” Do not repay evil with evil, or insult with insult, but with blessing, because to this you were called so that you may inherit a blessing.”  
Matthew 5:44… “But I command you all, love your enemies and pray for your persecutors.”
Romans 12:14… “Invoke blessings on your persecutors, blessings- not curses.”
1 Peter 3:15…”But in your hearts, set apart Christ as Lord. Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have. But do this with gentleness and respect, keeping a clear conscience, so that those who speak maliciously against your good behavior in Christ may be ashamed of their slander.  It is better, if it is God’s will, to suffer for doing good than for evil.”    Hmm… ‘in your hearts’ (don’t need a billboard).  Gentleness and respect…. (wow- don’t see much of that).  Is it good or evil to single out assorted ‘hot topics’ and make them a thermometer of morality and gauge of someone else’s heart?  Or would it be more in keeping with Jesus, being the definition of love, to reach out and show compassion?  I don’t have to agree with anybody to  be kind to them.
I can anticipate some who read this getting upset that I’m not focusing on pointing out  specific ‘hot topic’  sins of others  that they feel are clearly stated in the Bible.  I’m really not interested in pointing out someone else’s sin nearly as much as I am showing them the love that Jesus came to show us; the Holy Spirit  will convict someone of sin- I’m not that powerful, so why not show love and compassion?  I’m not always good at it- but that is my goal.   When anything comes across as hate, it will drive someone away who God loves, and wants a relationship with.  That’s not being obedient.  I don’t have to change my beliefs to show someone else what I believe- and I don’t have to do it with condescension or spite.  Neither of those are from God.  I don’t have to jump on every bandwagon that comes along to ‘prove a point’.  I know what I believe… I don’t have to repeatedly and frequently drive the point into the skulls of anyone I encounter.  My friends know what I believe, and IF someone asks me, I will aim for the gentle and respectful explanation.  🙂
Sometimes, there are people who will only know one or two ‘known’ Christians… do you want to show someone the love of God, or tear them down by talking about specific sins?  We are all sinners, and Jesus came for all of us.  There are no prerequisites for loving Jesus.  He takes us as we are.  All of us.  As. We. Are.  The miracles of being new creations happens after someone discovers Jesus, and the ultimate meaning of love.
So, what is my hope that I show people?  It’s very clear…  🙂  And it’s an ongoing process.  So, I’m really not at liberty to judge someone else.  I’ve got my own work to do.
I Corinthians 13:4-8a….”Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no records of wrongs. Love does not delight in evil, but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.
I wish everyone a very Merry Christmas, and New Year filled with peace, compassion, and joy of knowing that God supplies all of our needs.

 

 

 

Sharing Christianity With Love and Warmth

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

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

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

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

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

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

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

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

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

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

I wish that for everyone. 🙂

Frustration with Chronic Health Issues and Pain Control

Yes, I know I write about this often.  It’s my primary way to get stuff out of my head and blow off some steam.  I figure that people can choose if they read this or not; I have no choice living with it.   I’m frustrated.  I’ve had more stuff going on the last few weeks that have added something else to the list of physical problems.  I broke a tooth (doing what, I’m not sure), and when I went to have it fixed, I opened my mouth really wide and felt something pop or pull- something ‘not right’- in my jaw.  I got a bunch of novocaine for the tooth repair, so didn’t think much of the jaw until the next day.  I still thought it was possibly just a muscle strain, so tried to blow it off. That worked for about a week and a half, each day getting a little bit worse.  I went to an urgent care clinic on the weekend when the pain got pretty bad, and the lackluster nurse practitioner said he thought it was TMJ.  I always thought that was a more chronic wear and tear thing, but evidently not.  It can be acute or chronic.  I had the other side of my jaw knocked out of place during a rape/attack in 1987, and while it has never closed right, it never hurt- but I wonder if it set up the other side to be more sensitive to injuries.  I don’t know.  I’m just ticked off.  It wasn’t anybody’s fault when this happened a few weeks ago- I’m just tired of something else going wrong.

I went to see my pain management doc, and he gave me more info about temporo-mandibular joint issues.  He said that my description sounded fairly typical.  He felt the ‘popping’ and ‘crunchy’ stuff when I opened my mouth. He thought an injection into the jaw joint might help (he’s injected my spine several times so getting ‘shot’ didn’t bother me).  Initially, the injection only lasted about 6 hours, but today (2 days after the injection), it does feel better.  I know that sometimes the steroids take some time to kick in.  I’ve since read that injections into the TMJ can cause increased joint destruction if done more than three times a year, or more often than every 3 months. No problem.

The pain doc also increased the frequency of an opiate I take (fairly mild one), and I ‘gave in’ and took it more frequently yesterday, per the new orders.  That may have affected the improvement today as well. I get so tired of dealing with pain management issues.  I’ve worked in the drug and alcohol rehab business as a charge nurse (RN) in detox.  I’ve seen what addiction looks like.  I’m not someone who is likely to take too many meds- if anything I back off.  I’ve asked for weaker meds more than once when stronger meds were offered. I figure I need to have something  in the future since degenerative disc and joint diseases aren’t going to get better.  Fibromyalgia is a bugger on a good day.  The chronic headaches don’t respond to many medications.  And, because of the ‘opiate hype’ from  high profile situations that went bad, I feel I have to defend my right to not live in constant pain because of someone else’s addiction.  I’m not an addict.  I don’t want pain meds to take care of emotional issues- I want to have decreased physical pain, taking meds as they are prescribed.  I just want to be able to stand being in my own body.

My pain management MD is board certified, and has specific rules for remaining his patient.  If people don’t follow HIS rules, they are no longer his patient.  Done.  I like that.  I also like that he doesn’t act as if my complaints of pain are nothing but ‘drug seeking’ behaviors seen with addicts.  He listens- and that alone is helpful.  I know he’s not judging what I tell him about my pain.   I’m sure he does mental assessments to look for red flags, but I go out of my way to not give him any.  I never ask for refills a minute before they are ‘due’.   I never claim I’ve dropped a prescription down the sink.  I don’t adjust dosing on my own (even though I have plenty of nursing drug manuals to find safe dosage limits).  I don’t mess with the plan.  I’m compliant.  He, in turn, isn’t extremely picky about the time interval between the allotted number of pills prescribed in a day.  He IS definite about how many pills/24 hour period he will allow.  That works for me.  If I take a pill and in an hour or two, I’m still not doing well, I can take another.  Chances are, that will get me through 6-8 hours, or longer.  He does allow for non-opiate meds for ‘breakthrough’ pain. The biggest help is knowing that something is available.  I can put off taking something if I know it’s there- I don’t have to ration to the point of living inhumanely. But I don’t have to take the allotted pills every day either.  I prefer not to.

Addiction involves a lot of components, most notably continuing to use the chemical in spite of negative consequences, and using the chemical for something other than its primary indicated use.  Medicating emotions with medications for physical pain is a huge trigger for addicts.  Many  addicts start out with physical injuries needing physical relief, and end up getting more of a positive emotional reaction that keeps them looking for more. No matter what.  I do believe it’s a disease. Nobody starts out hoping to become an addict.  But, it does screw things up a LOT for those of us who are not addicts and simply want to be able to stand being in a body that hurts all the time.  Statistics state that for non-addicts who are prescribed opiates, and use them as directed, only % 2-5 become addicted.  That’s not the same as dependence or tolerance (the body’s adjustment to having the chemical on board on a regular basis).  I purposely don’t take the stronger pain meds I’ve got (still not that strong in the opiate world) on consecutive days UNLESS I’m dealing with an acute situation.  Like my jaw.  But, if I do take the meds as ordered for 2-3 days, the relief is good enough that I can go back to non-narcotic options… anti-inflammatories, topical creams, ice packs, massage, etc.  I don’t expect to be pain free. That isn’t a reasonable expectation.  But an attempt at humane existence is reasonable, I think.

SO (in general), because %2-5 have problems, % 95-98 are treated as if they simply want a buzz.  That doesn’t add up in my book.  But the ‘problem patients’ are often very high profile celebrities, and anything to do with pain management gets lumped with them.  Opiates are a valuable part of being able to tolerate and treat physical pain.  I know that former co-workers (who are in recovery and have a history of addiction) at the drug and alcohol rehab place don’t agree with opiate prescriptions being used much at all.  There’s a big ‘anti-pain medication’ mindset out there.  And, non-recovering MDs take that stance out of fear and misinformation as well, I think.  They run scared.

My primary care doc isn’t comfortable prescribing opiates for a chronic pain scenario.  That’s fine.  We have an agreement that she can contact my pain doc at any time, and I let her know about any changes in my meds after I see him.  Everything is above board.  Total transparency.  And I don’t ask her for narcotics.  I do discuss non-narcotic pain meds with her, since she manages most of my medications for my list of chronic disorders.  Anti-inflammatory meds are in her domain.

My dad asked if the pills I take will make me addicted. I told him that I’m not an addict, so that is extremely  unlikely.  Addicts become addicted.  Non-addicts seldom do.  But, nobody seems to want to hear about the benefits of treating pain with medications.  Since nobody can see or feel other people’s pain, it often gets minimized.  If it doesn’t bother someone else, why should the one in pain be complaining?  Because an addict can’t handle a prescription for narcotics, then nobody should be given pain relief if they experience the level of pain that narcotics are appropriate for.  It sucks!!

I’m fortunate.  My pain management doc has ‘house rules’ that make sense. He can require a urine drug test at any time.  He doesn’t discuss or make dosage changes over the phone.  If he finds out that someone is jacking with the prescription frequency or dosage, that’s it.   I respect that.   I want someone to have those kinds of rules so he can treat people who are there for legitimate physical pain, who are seeking anything that will make existing more tolerable- not to get loaded.  I no longer have a frame of reference for ‘pain free’…. those 1-10 pain scales are a joke.  I’m always at least a 5-6, which sort of resets the whole thing.  Those scales don’t work for chronic pain. I can use them for new pain (like my jaw).

Regardless, I’m still thankful for a lot.  I’ve got a routine down, and know what my limitations are.  I ‘look OK’ so sometimes I feel very misunderstood.  But, I’m still able to live on my own, and enjoy my puppy, computer, and TV.  I don’t require a lot of time with other humans (which is very fortunate).  I have contact with friends on Facebook even if I don’t have much ‘in real life’ time with them.   I have a relationship with God that gets me through a lot.  If I didn’t have some sort of spiritual belief system, I don’t think I’d be able to tolerate a lot of what has simply become ‘normal’.  I also have the promise that in eternity, I’ll have a new body, and no more pain or disease. 🙂

Feeling Deformed… and Being Needed

I just got back from the endocrinologist’s appointment… they always weigh me there. I already know the number will be horrible before I walk in the door. I know it every time I look in the mirror, or remember the rings I can’t wear anymore, or wonder why I look like an orangutan (my chin has more than doubled).  I detest what I see when I look at myself, so I avoid it whenever I can.  But, bless the doc’s heart- she didn’t rag me about it.  My diabetes numbers are very good, my blood pressure was 98/60, and my blood sugar records were more likely to be on the low side than too high- so it’s not about too many carbohydrates.  And, I’ve stayed within 3-4 pounds for a  year.  But I’m not happy.  Not by a long shot. I look horrible.

I know that as a Child of God, I’m supposed to look at that to determine my self-worth.  I know that He has everything under control, and that He has some reason for this.  I’ve tried so many ways to lose weight, and it just won’t move. I’m afraid to get too radical, since I have a history of some pretty significant starvation and eating disorders. I don’t want to go back there.  SO, how am I supposed to learn to accept myself like this?   I’m unacceptable !  I don’t know what He can do with me like this to be of use to Him.  But I have to trust that He’s got it figured out.

My oncologist told me to just be thankful that I’m alive; many people with acute promyelocytic leukemia don’t make it… I know of two people by name who didn’t even know they were sick  until a day or two before they died from brain bleeds. One was 29 years old, the other was an 11 year old kid.  They both shook me up more than a little.  I was pretty sick in the hospital for six weeks… and initially I lost weight on the induction chemo. Then came the consolidation (arsenic), and maintenance (M6-mercaptopurine, methotrexate, and tretinoin)… 19 months total.  I blew up by 50 pounds from the lowest post-induction chemo weight (30 pounds from before the cancer diagnosis). It’s humiliating.  YES, I’m very thankful to be alive, but I feel like I’ve failed at getting my body into better condition.

My mobility is limited because of degenerative disc and joint disease, bone spurs, and fibromyalgia. My activity tolerance is limited by dysautonomia.  I’ve tried sitting exercising, and my heart rate gets to the point of making me dizzy and pre-syncopal.  I can’t get in a heated pool, or the heat will trigger my blood pressure to nosedive.  I’d slink under the surface of the water, and drown. Not helpful.  I can do some isometric stuff- but that hardly melts off the fat.

But I am thankful for a lot. I love my new puppy, and she needs me to be here for her.  She’s someone who notices if I’m around or not, and wants me close to her. I need that. I don’t get any sort of personal satisfaction from being a nurse anymore… I miss that a lot. I loved working, and am thankful that I had the years I did.  I am very thankful for the stuff I’ve survived.  I want to be here.  I’d rather hate my body than have it parked in a marble orchard somewhere (that’s what my dad calls cemeteries).  I enjoy many things (mostly on TV, or online).  I’m thankful that one day, I’m promised to have a new body in heaven.   I’ve requested a size six. 🙂  It’s just hard for now.

My puppy doesn’t care if I’m a size &^%&# or a size zero.  She just wants me here. When I call her name, she wags her tail as if I’d just given her the best prize in the world.  To her, I’m enough.  I’m hers.  I guess maybe I’ll just have to start there, and have that be enough ❤

People Who Literally Make Me Sick (Dysautonomia)

That may sound ridiculous, but within the walls of dysautonomia,  anything that triggers a fight or flight response is something to be avoided at all costs. Unfortunately, that includes  avoiding people who come across as harshly combative, unapproachable, condescending, promoting hate, and/or having no respect for anybody but themselves and their very narrow circle of (usually) legalistic Christians.  It’s sad.  Several of these people are folks I’d hoped to reconnect with, or at least get to know better.  But when interactions with them actually trigger the heart rate abnormalities and changes, and other dysautonomia symptoms, I can’t have anything to do with them.  😦

I love the Lord with all I am.  I try to look at things with a non-judgemental view, and realize that I’m only responsible for my own actions.  I’m also supposed to be a representative of Jesus, and He Himself said that He is love.  Love doesn’t have a place for hate, rudeness, impatience, unkindness, abruptness, superiority, pride, or anything else that pushes others away.   I feel like I fail that because of not being able to physically tolerate hostile and confrontational people.  I don’t like that my life is better without some people in it, and for that ‘all’ I can do is pray.  Being sick because of them helps nobody. 

I see so much hatred for our President.  That saddens me.  I don’t have to like what he promotes, or believe anything he believes. But promoting and spreading unkind words doesn’t reflect him  nearly as much as it does my own character.  I’m supposed to pray for him as well.  It’s the most powerful thing I have for those who disregard what I believe… and just because I don’t agree with some things doesn’t mean that I disagree with everything.  I don’t claim a political party… I don’t identify with any of them because of the extremism, which always repels more than it engages.

I see so much judgement for those who aren’t Bible-thumping, legalistic Christians (BY Bible-thumping legalistic Christians).  I believe in the Bible very strongly. But I also believe that I don’t know a whole lot more than what I do know.  Because of that, I don’t feel like judgement is my right.  I believe that a Christian is supposed to represent Christ, and not be judge, jury, and executioner for people they don’t know.  I can only judge myself.  Each person will answer to God one day… not me.  I don’t believe in legalism. I believe in a relationship with God that is my own. I can’t live someone else’s relationship with Christ.  I can’t determine who is ‘enough’ of a Christian.  I’ve only walked in my own shoes.

I see so much condescension and disrespect online. Some people I know, but most I do not, and am thankful for that.  I can still pray for them.  I don’t have to like someone to wish them better than what they offer me.  I have had to block some of these people from my life because of the physical reaction to their apparent demeanor in whatever way they’ve communicated with me.  A huge part of communication- the non-verbal- is missing from anything written.  I don’t understand why some people can say things I strongly disagree with, and I don’t become sick, while others leave me needing medication to regulate my heart rate.  Maybe it’s because I’ve heard their tone, general demeanor, and know their personality well enough to know they typically communicate with kindness and respect.  I don’t know.

There are a few people who have been SO personally ‘combative’ in how they interact with me.  One refers to me as ‘human debris’, and has been blocked from my life for several years. I wish him/her well in his/her life, but he/she’s too toxic to have anything to do with. There is another person who comes across as generally condescending in a bizarre way.  He/she also has some indescribable quality that pushes me away. I don’t like that I feel that way, yet I can’t control the way my body responds.  I’m not proud of that. I’ve tried to form some sort of relationship in the past, but there’s a huge wall.   Others who have pushed my body past the limits of being physically stable are those who have been friends of friends on FaceBook… unfortunately, their hateful combativeness with any interaction ended up in deleting the friend (at least on FaceBook; with some, there is still e-mail contact away from the venomous ‘friends’ of theirs.  IF someone had talked to someone I actually knew like that, THEY would be the one cut loose.  I won’t tolerate attacks when something is on a page with my name on it.

There are others who condemn someone very close to me for things that they may have heard about, but got either a biased report, or just enjoy grudges. The people who were there are not nearly as hateful as those who were not.  I will stand behind this person any day of the week.  He/she has always had my back. Has he/she annoyed me at times? Yep.  I’m sure I’ve done my share of being annoying.  (Anybody want to cast the first stone?)  My mom was very hard to live with.  She taught me that appearances and my weight determined my value as a person, and treated me as such. (In her own weird way, I know she loved me, but she was very damaging; I still love and miss her).   But, that is always blamed on my dad- by someone who wasn’t even there.  There are a lot of judgmental eyes on the most outwardly “Christian” side of the family… and that saddens me.  I had no idea how deep the hate ran until I moved back here, hoping to be closer to all of my family.  Evidently, they have no need or desire to move forward and be forgiving- or have anything to do with me, because of their feelings about my dad. (Not all, mind you…. but enough to make things difficult). 😦

Anyway, dysautonomia isn’t just about the physical limitations of standing or sitting too long, being overheated, or having pain push me over the edge. It’s also about being triggered emotionally,  while having all of the cognitive parts of the interaction being very rational, but having my body become ill.  It’s incredibly embarrassing.  I have medication that helps to some degree, but prevention is always better.  And sometimes prevention means avoidance.

I will always wish those people well.  🙂

Limitations Don’t Define Who I Am

My disabilities don’t make me who I am.  I don’t want someone else’s life, because that wouldn’t be me either.  I wish many things weren’t the way they are, but I don’t want to be someone else.  I’m getting very close to being 50 years old, and I’m OK being plain old disjointed, imperfect me.  I can’t be anybody else.  Trying to be someone else wastes the time I have.

I’m not able to do many of the things that I used to think defined me. I’m not able to work as an RN, and I miss that more than I can describe.  I miss taking care of other people in the way that gave me so much satisfaction.  I treated them as I’d want to be treated.  I learned how to empathize with their pain, and in turn be a better human being.  I miss those moments with someone who was going through something life-changing, and being able to offer some level of comfort.  But being a nurse doesn’t really define me. I used to think it did.  It’s a huge part of me, but it’s not all of me.

I’m diabetic, epileptic (temporal lobe nocturnal seizures), a cancer survivor (acute promyelocytic leukemia), I’ve got fibromyalgia, lung scars from multiple pulmonary emboli, bone spurs in my neck, chronic headaches, severe muscle spasms with any lifting or repetitive motion (groceries, trash, laundry), and dysautonomia, which causes severe heat intolerance, blood pressure and pulse changes, and very limited activity tolerance.  And none of that defines me.  It’s stuff that I have to deal with on a daily (sometimes hourly) basis…but it’s not who I am.

I had eating disorders for years (decades), but anorexia and bulimia don’t define who I am. I thought they did, and when I was in early recovery, I didn’t know who I would be if I wasn’t ‘the one who won’t eat’.  But all eating disorders did was mask who I really am.  They took away my ability to live normally and interact with people in a way that really put me into any sort of relationship. My main relationship was with the eating disorders. Nothing happened in my life unless I thought about how it would affect my ability to avoid calories.  That was my primary motivation in everything; any sort of real friendship was put way down on my list of priorities- though I didn’t see that at the time. It was a very selfish time in my life that I’m not proud of.  Eating disorders only steal time- they do nothing else.

Being a rape survivor doesn’t define who I am. It has had a huge impact on my life to have survived six hours of continuous sexual torture.  It changed how I interacted with people, and my ability to allow anybody to get very close.  But it’s still a relatively small part of my life… six hours changed a lot, but they didn’t change who I am at my core.

So, who (and what) am I?  I’m an average human being who wants to be accepted and have people in my life who accept me, warts and all.  I loved (and miss) all of my dogs, and am looking forward to getting a new puppy (and am waiting for her to be conceived at this time; I know where she’s coming from).  I care about people, and my heart goes out to those I see on the news, and hear about on FaceBook.  I miss my ‘old’ life before disability, but am learning to accept what my reality has become.  Most of all, I love God.  Without Him, I wouldn’t be here.  The consistency I feel when I read through the Bible (especially Psalms and Proverbs when I’m feeling badly) is what I can depend on much more than I can with human beings, who are fallible just as I am.  Every day is a chance to just ‘be’. I’ve had times when I thought that I would die, so life is precious.  I realize that in spite of things that have happened, I’m very fortunate in so many ways.  Some days, I don’t remember that as much as other days.  But I do understand that I’m here for a reason, and I’m thankful for that.