The Disaster That Was 2016

I’m not in a good mood.  This year has sucked rocks.  I won’t go through the myriad of shootings, public riots, celebrity deaths, cop shootings,  “unarmed” shootings, local crime rate, racial tension,   blah, blah, blah.  All that does is make me dislike humans more intensely (and with the racial stuff, it’s usually the arrogant white folks that piss me off the most).   Since my dad died in April of 2016, I have had few interactions that I really cared to be a part of.   They were ‘mandatory’ or required to be just social ‘enough’.   If I tried to escape  I’d turn on the TV  just to hear about how horrifically humans were treating each other, and it just made me grieve for civilization.   Thank God there were enough interactions with a  few people that at least kept my head above water enough to breathe.   I’m very grateful for them.

The presidential election process further lowered my respect for humans in general (a few exceptions helped me not lose all hope).  One relationship ended because of the rabid and incessant postings of negativity about Obama…. get the hell over it- he was elected nearly eight years ago… MOVE ON.  I can’t stand the constant and so ‘wing-nut right’ rants.     I didn’t much like any of the candidates this year, but the options in the end were  almost unbearably bleak… one much more  than the other (imho), and that’s who we’re stuck with now.  It does warm my heart that he didn’t win the popular vote.  There’s a glimmer of sunshine there. Doesn’t matter who specifically won the popular vote, as long as it wasn’t the sociopath.   I’m grateful for that bit of hope.

Back to my dad.   He died on April 4th at 12:50 a.m.  He wasn’t ‘expected’ to die during that period of illness, and like my mom, he had been blown off when he complained about pain/had symptoms.  Don’t go to rehab hospitals where they have such narrow focus.  They try to fit all symptoms into the disorder they are treating.  Dad’s former (very sweet) lady friend of eight years went to the same place, and she called me to ask what she should do since they weren’t dealing with the fluid accumulation in her abdomen (she had cancer).  I told her to ask to go to the ER for an evaluation.  She did, and ended up having to have multiple ‘drainings’ of the fluid. But the facility didn’t come up with the idea to send her in for evaluation on their own- she had to ask.    I wish I’d been more astute with dad’s pain.  He wasn’t great at describing pain, but I feel bad that I didn’t see more.  I am extremely relieved that I was with him during those last 19 hours.  To have missed that would have killed me.  I made sure he knew I wasn’t leaving him before he went into a coma.  I promised not to leave him, and I didn’t .    But as an RN since 1985 (regardless of being disabled, I keep my license), I have constant ‘brain drain’ about what I should have done to help him more.  He was a great dad.  He didn’t deserve that much pain.  He deserved to be listened to and believed by the people who were supposed to be caring for him.

There was another ‘lady friend’ ( “B”) that dad hung out with socially for about a year before he died, and who was around  like flies at a picnic during the last month of his life. She encouraged him to be dependent, and robbed him of whatever independent activities he could do… which weren’t many.   She turned into more of a nightmare after he died.  She obviously had some intense delusions about the type of relationship she had with dad.  Dad truly  liked the companionship (and her billionaire son in law fascinated him- only thing he mentioned if someone asked if he was seeing someone- never mentioned her by name).  She liked “possession” of him (and had a total hissy fit when I told another one of dad’s lady friends she could put photos on the photo table at the visitation; it was a pathological reaction- they were. not. married.  I included as many of his special lady friends as I could find photos of) .  She also hurt me intensely after the funeral, complaining that she wasn’t mentioned by name ‘enough’ during HIS funeral.  She said her church friends all noticed it and that the pastor who did the service had it in for her since she wasn’t a member of dad’s church… that pastor hadn’t even worked at that church for a while… “B” was clueless and so friggin’ insecure and paranoid.  She wanted to know why I hadn’t consulted her about financial matters (like it’s her business- she was fishing for info, imho).  She also told me (dad’s daughter) that SHE would miss dad the most.  Seriously?   He was my DAD.   She was a 1.2% part of his life. That’s it.  Barely existed (would you miss 1.2 cents from a buck?)  She told me that dad didn’t like the one  lady friend (with photos, who he’d known since high school), and I knew that wasn’t true.  That’s when I started to see “B”  more clearly.  She fabricated things to make her feel like his lifelong love… well, she missed that train when mom married him, and then the wonderful lady he saw for eight years after mom died.  I’d lost my dad, and she was ragging on about all sorts of stuff.  Sure, I knew she’d miss him.  But her degree of histrionics was exhausting and painful.  “B” was creepy- saying that she saw him looking back at her when she put his glasses on her kitchen table (she had a mild conniption at the visitation about when dad’s glasses were going to be taken off… I told her to take them just to shut her up).  I do hope she’s well ( and well away from me).  I pray that her macular degeneration is stable, and not getting worse.  And I want nothing to do with her.  I had to have the garage door opener codes changed because she refused to give me back the one she was last known to have.  I added keyless deadbolts.   When I think of her now, I wonder about her DSM-V diagnoses.   And I still wish her well.

I’ve been contacted via greeting cards by two of my deceased mom’s siblings who made sure I was excluded as ‘family’ while they manipulated and dismantled my late grandmother’s trust (grandma was spineless when it came to standing up for what was fair… she got bullied and she folded) . It was mangled after my mom died, and the surviving siblings kept ensuring they profited off of their dead siblings each time one of them died.   Once someone writes me off, it’s over.   I don’t want to  be reminded of their existence with hypocritical cards.   Either I’m part of the family, or not.  Can’t have both.  They deleted me based on lies they KNEW were lies.  That’s what gets me the most.  Screw the money.  I’d settle for truth – but that bunch is incapable.  Leifheit Logic in that generation has been sketchy at best for decades.    My mom was in that generation, and her biggest ‘flaw’ in regards to logic was keeping her marriage vows and having strong faith… maybe they resented her for that… ?  .    Hard to tell with narcissists. I do know that I want nothing to do with them.   They ‘cancelled’ my family ‘membership’ – and that’s just fine.  But be done with it already.   GO AWAY, even via mail.   I am thankful that the six cousins I have from the other ‘discarded’ sibling understand that we’re worth nothing to the greed-mongers.  I didn’t even tell mom’s surviving siblings  when dad died; they found out on Facebook…  never occurred to me to consider them part of the family to notify.  They dumped me about 5 months earlier.  It wasn’t even an issue in my mind/life.

I’m going in to 2017 with a questionable mass on my neck.  I have a CT scan scheduled for a week from tomorrow.  The hope is that it’s just a lipoma (nothing major), but with my crazy medical history, including a LOT of chemo for leukemia, there is always a  question about more cancer.  Chemo can cause cancer (isn’t that special?) .    It has no doubt contributed to the increase in peripheral neuropathy (including the dysautonomia/POTS).  But without it, I would have been dead in 2010.  Pain is more intense now, including the degenerative disc and joint disease.   I see a new chiropractor next week to hopefully put my neck ‘back in place’.  But, I’m alive.  That is still worth it.

I know I have a lot to be thankful for.  That isn’t lost on me by a long shot.  But like anybody I still have my bad days, and today is a really lousy one.   Next year, I MUST lose weight.  I need to do all I can to avoid future joint replacements and minimize joint and disc pain.   I have to get more focused on keeping track of carbohydrates and insulin requirements.   Right now, my blood sugars are very unstable.  Stress isn’t helping that.   But I’ve got my dog.  She is always happy to be around me, and I’m so thankful for her.

Mostly, I’m thankful for God.  That is my ‘Constant’ and my Hope.  I don’t generally find organized religion to be satisfying, but I do love the Lord.  Call it what you want if you don’t believe… for me , my faith is the only thing that keeps me going.   I know that this life is temporary, and that after this earth, it’s all good.   I don’t like the politics of Christians.   I aim to be more compassionate than the judging and ‘dismissing’ of entire groups of people – and I’m not unaware that my feelings about that are also judging and dismissing (I’m working on that).  And, I still love God more than any human I’ve ever met.  Fortunately, I had a  great earthly father to show me a small example of what a Heavenly Father feels for His children.   When this earth and its people depress me, I remember God.  He has this all in control.   I don’t have to worry about any of the mess going on… in the end, good wins.   I don’t have to worry about what others do, or use them as political pawns.  I only answer for what I do.  When there’s nobody to talk to, God is always there.   No matter what, God is my refuge and joy.  He is what makes tolerating this earth bearable.   I know it’s all going to be OK one day.  Maybe not soon, or maybe tomorrow. It doesn’t matter when.    He wins every time.    And I know that HE  alone can help me see things in a way that is less painful.  HE can remind me of the good that is already here.   I don’t think I’d be able to function if I didn’t have that hope and assurance.

Driving Ms. Hazy

Very bad memories of nearly passing out in the drivers seat. While the car was moving. Limitations with sitting upright (and not moving around) for any length of time. Abnormal heart rates as a result of being in one position. Being confined to a sitting position with no chance to take ‘vertical’ breaks. Many, many episodes of actually losing consciousness because of the dysautonomia (dysfunction of the part of my brain that regulates involuntary bodily responses- blood pressure, heart rate, breathing, temperature control, etc.). While I’ve never passed out in the car, the times I’ve bitten the floor on solid ground are literally too many to count. (I don’t count well when I’m not conscious).  Having driven myself more than 5 miles one-way only one time in over 6 years.  Not exactly great associations with driving my car.

But I want to go to a celebration of a friend’s life at the end of this month. I want to be there. She died one week ago today, and the celebration is going to be about all of the good she contributed to the lives of thousands of kids and adults during her ministry at several places. For me, it’s mostly about a wonderful camp I attended as a kid, and then worked at during the summers of 1980, 1981, and half of 1982.  She was a major part of the camp being my spiritual home, then and now.  I want to be with others who are going to celebrate her life. It’s going to be a wonderfully positive gathering.

Yet I’m  quite nervous about driving the 50 miles, give or take, one-way, in order to be there.  I know that I have enough ‘warning’ when my body starts to act in weird ways that signal I’m in trouble and need to pull over. I know that the worst thing that can happen is that I’ll need to put the car seat back, so I can get the blood moving into  my head. I know that I’ve got my cell phone if I should get into major trouble. I know I’ve got my ‘as needed’ medications for many possible problems,  and assorted equipment to prevent getting overheated.  I know that I generally pack enough stuff to prevent or take care of  just about any medical condition known to exist, for the entire population of a small third world country.  I know that I’ve survived up to this point, and that the vast majority of things people worry about never happen.  In my head I know these things…my heart hasn’t caught up.

I know that God won’t abandon me, and that there is comfort in His presence. I know that this celebration is mostly gratitude about how He used this wonderful woman to extend His love for more than 40 years to so many kids. I know that I can do all things through Christ, who gives me strength (Philippians 4:13).  I do believe that, and so I will go.  And I will still  be prepared for anything that could come up. That’s not a lack of faith, that’s common sense and being responsible. And I will ask God to knock a knot in my head when I get panicky, and bring me back to reality.

Sometimes I need to remember that I drove a 17 foot U-Haul  (total of 23 feet of truck including the cab) from deep in the heart of Texas back to my childhood home near Chicago, with only my dog- so no relief driver.  I had been diagnosed with the dysautonomia prior to that trip, and while I was much more stable then, there were still  risks, but I  made it in two days with no disasters.  Well, I did wipe out part of a McDonald’s drive-thru sign somewhere in Oklahoma, but the insurance took care of that- at least on the truck. 🙂  I need to remember all of the ‘day trips’ around central Texas that I used to take, with my camera and a ‘let’s go’ attitude.  Granted, I was healthier, but my driving skills are solid, and actually a little bit of ‘old fart’ in their adventurousness. Even my 80 year old dad will pull out on the road before I will if making a left turn onto a street without traffic lights.  I’m not a risky driver.  I’m a wuss.  So, I should be just fine.

Between now and then, I’ll get my stuff ready- ice vest, ice vest inserts, ice bandana ice packs, diabetic supply kit with insulin, any ‘as needed’ medicines for a variety of potential issues, a couple of bottles of water, a bottle of Coca Cola for any potential low blood sugar problems, insulated bag and ice packs for all of the cold stuff, wheeled walker with the seat, ad nauseum… I figure the car can serve as a tent if I get stuck somewhere, but I’ve also got a gizmo that will jump my battery if it dies out, so I’ve got that covered, too.   I have to get home in time for  my dog’s heart failure medicine; motivation to make this all go smoothly.

I’ll be so glad I decided to go to the celebration of her life.  She continues to be a role model for reaching out and grabbing opportunities to ‘be able’, and not live in a disabled world.  She continues to encourage me with my memories of her life.  The least I can do is show up to celebrate her. ❤

 

Where Was God During My Cancer?

Right next to me.  That is a huge reason why I got through it without too many emotional scars.  Yes, it was a scary thing to hear I had acute myelocytic leukemia. Yes, I was nervous about chemotherapy. I thought about dying.  But it was what it was.  Without my belief in God having everything under control, I would have been a mess.  I didn’t have to understand what He was doing, or why He was allowing it.  I just had to believe it was all happening for a reason.  I’m still not entirely sure what the reason was/is- but that’s OK.  It’s out of my hands.  I’m generally happier when humans aren’t managing things.

I’d ended up in the emergency room  before being diagnosed . I’ve got an extensive medical history, and because of having had many, many blood clots in my lungs at one time, I’d been told that I should always get any sort of funky feelings in my chest or breathing issues checked out at the ER.  I’d seen my lab work and a hematologist/oncologist, who was planning to do a bone marrow biopsy the following week.  The Friday night  before the scheduled bone marrow biopsy (of course it was a Friday night after office hours) I started having some odd pressure and mild shortness of breath. I knew it could be because of the low hemoglobin, but figured I’d better get it checked out.  That may have been the difference in surviving or not.  My lab work values had fallen even more.  I later found out I may have had a week or two to live had I not gotten started on chemo and transfusions of platelets and red blood cells when I did.  That ‘gut’ feeling was something I’ve learned to listen to, and believe it can be a nudge from God to perk up and pay attention to something.

When I first got the diagnosis, I wasn’t that surprised.  I’d seen my lab work that got me referred to the hem/onc, and knew whatever was coming wasn’t going to be good.  I’d at least had that much warning.  It is different to actually hear the words confirming what sort of diagnosis I had, but at least I knew enough as an RN to know that I was in trouble.  I had time to have some sort of ‘back of my mind’ reaction.  So, the praying started in earnest before I was actually diagnosed.  My main prayers- please, God, either get me through it, or minimize the pain.

I knew where I’d end up if I died.  I’ve had very strong beliefs in Heaven since I was a kid. Some say that’s illogical, blind faith.  I believe that faith is sort of blind by definition- LOL.  If I needed proof, it wouldn’t be faith !  I did pray often, and know others were praying for me.  Several of my dad’s friends from his church came to visit me, as did a couple of the visiting clergy folks.  (I’d grown up in that church, so knew the people he knew for the most part).  A big blessing was the social work Master’s intern that was assigned to me was actually a  friend,  former neighbor, and church friend (her whole family).  I was so glad to see her, and told her that it was OK to tell her family, who also visited.  It was nice to see familiar people.

I believe that getting to Heaven is a choice.  It’s not about being ‘good’ or living a decent life. It’s about belief. In particular, it’s about believing that Jesus, God’s Son, came to earth as a man in order to die as a sacrifice for all of our sins.  Nobody who is of an age of accountability  can ‘work’ their way into Heaven.  It’s about believing in Jesus, His death and resurrection, and that He’s going to come back one day.  So Heaven is a choice. Not believing is also a choice. And, it’s all free will.  God gave us free will to decide if we believe or not. He could have designed us all to follow Him without making that decision, but what good is a relationship that is ‘programmed’?  What good is the ‘love’ of a child that is pre-programmed?  It’s not ‘real’.  God didn’t create puppets. He created us with free will.  It’s up to us to make that decision.

I’ve been told that my ‘illogical’ faith is a form of being brainwashed, or following as a puppet, but it’s actually my responsibility to continue believing what I do.  I don’t believe salvation is ever lost once it’s accepted.  However, to maintain an active  relationship with the Lord, I have to put some effort into it.  A feeble analogy is this:  a plant will still grow once it has roots- but weeding, fertilizing, watering, pruning, and protecting it make for a much fuller plant with deeper roots, fuller blossoms, and  a longer life.  Am I perfect at it? Absolutely not !  I ask God to forgive me for various things all the time !  But He’s working in me, using what strengths I have.  He can use all of us. Many of the people in the Bible who had the greatest impact were train wrecks before they let God work through them !

Christianity has been described as ‘exclusive’.  Nothing could be further from the truth. There are no requirements other than belief and acceptance of what Christ did. That’s it.  There are no ‘steps’ in order to be good enough.  No amount of following ‘rules’ will get someone into Heaven.  No trips to places around the world are required.  There are no limits on the number of people who can get in.  It’s just belief and faith.  God loves all of us.  But He can’t permit sin in Heaven.   Jesus took away our sins when He died on the cross- that is the payment, and WE didn’t even have to pay it !  It was paid for us 🙂  He wants all of us in Heaven, but He won’t force it.  It’s up to each of us as individuals to make that decision.  But once we’re His, it’s forever.  He never leaves us.  Life still happens.  But it’s just a fraction of a second in the grand scheme of eternity.  For me, it’s what sustains me no matter what happens.  I’m never alone, and Heaven will be indescribably wonderful.

I pray I will see you there 🙂