Going on Palliative Care

And the biggest reason is that I can’t get specialists to listen, and am no longer willing to put this much energy into trying to maintain as much as I can of what I have left that works.   This week, I wasn’t even allowed to come to an appointment with MY concerns,.  I own the body.  I’ve been in it for nearly 55 years.  I get to have a say in my own health.  YOU do not have the final word- ESPECIALLY if you can’t bring yourself to just listen, or LET me come in to my scheduled appointment.  Help me see your view (I understand the surgeon’s need to know more- but it’s not about those two tests that are not needed- they were done, with no current changes in how that is going- there is a diagnosis; what is going on now is different).   That doesn’t seem to be part of medical practice in many of the specialists offices I’ve been in this year alone,  I’m done with the medical shit show in Northern IL.

I’m “complicated” on a good day.  Starting in January of this year, I started having some symptoms suggestive of gallbladder disease.  I got an ultrasound ordered by my primary doc, and yup. Big gallstones, but not inflamed.  OK.  Off to surgeon.  Saw him, then had some stuff come up with my kidneys, and because of nausea, I’d become dehydrated- so had to postpone gallbladder surgery.  Off to GI doc, whose nurse practitioner became absolutely rabid when I APOLOGIZED for coming across bitchy (I felt really lousy that day).  She went off on EVERYTHING I said after that, so I guess she assumed I was there for an old problem and proceeded to order tests already done TWO YEARS ago, for something that hadn’t changed, and it all seemed very punitive.  She didn’t even let me finish. The constant berating shut me down.  She chewed me out for not seeing the nephrology guy, when I’d been told they would call me.  Ended up the order got messed up, so they didn’t know to call- NOT MY FAULT.  Finally got kidney issues figured out after weeks of putting a tube in my own nose into my stomach to help get more fluids in (but not on good reflux meds because of kidney issues, so not flawless).  Then I broke my ankle on June 2nd.  I’m still healing from that.  I’m pretty sure my 5th metatarsal (toe) got whacked pretty well, also.

On Wednesday of this week, I was supposed to go see the surgeon again per MY request.  They called three hours before the appointment to tell me that the surgeon wouldn’t see me until I had the GI tests done.  I’d waited for weeks for that appointment. The nurse wouldn’t even let me explain MY side of things, and that I wanted the appointment to show the doc a possible epigastric hernia in case HE wanted to think for himself and order a test to see what was going on structurally…. nothing down my throat or inside of my stomach has changed, symptom wise, in two years.  A CT could be useful- if that showed something in my stomach, then of course I’d agree to repeat the EGD.  I also can’t do the follow-up that the GI folks wanted before because of transportation issues (my dad died- he was my transportation), so why do it all again, just to not be able to follow-up again?  Makes no sense to me.

I’ve been an RN for 33 years (disabled, but I keep my license and CEUs current).  I’m not stupid. But I am very frustrated.  I  absolutely understand the surgeon wanting to know what he was getting into, but I’d think that actually SEEING what I was talking about at the appointment I’d waited weeks for would have been useful.   I won’t see him again.  I was gutted after that phone call (no pun intended).   I was trying to be responsible by letting him see what was going on.  It hadn’t been as pronounced when I’d seen him before.  While spending weeks mostly in bed with my foot up, I’ve had to get up and down more (bathroom closer  in bedroom vs. living room), and that’s when it really popped up.  It’s been there before- but now it’s just weird.

If I have to fight this hard just to have a physician LISTEN, then I’m done.  I’m not in any shape to move somewhere with better medical care, and I think if I had to leave this house (last part of my parents left), I’d just die anyway.   No more specialists (except one required by Medicare for CPAP supplies). No more procedures. No more consultations.  Only simple lab work.  No more bad news. No more assholes.   No more being berated by unprofessional “professionals”.   No more having to fight to stay as healthy as possible.  I’ll be compliant with what I agree to with the palliative team, but otherwise, the less I have to have anything to do with the medical community in Rockford, IL, the better.

Thank GOD for the nursing care manager at my primary doc’s office.  She has been exceptional when all of this overwhelming stuff just becomes so crazy that I just fall apart. I’m still having issues with grieving my dad’s death.  The health issues, and never knowing what else is falling apart is exhausting.  I’m doing the best I can, but there are a lot of days when I’m really struggling.  Laura has been wonderful.  And she LISTENS.  If I feel heard, I can settle down pretty well.  None of the specialists even seem to think that there might be a lot more going on in someone’s life than the issue they seek help for.

Palliative care focuses on comfort, stress relief, and symptom control.  People don’t have to be terminally ill.  It’s also for life-altering chronic disorders… and I have several.   I can have things fixed if I want to (unlike hospice), but I really don’t see the point.  I don’t want to know if anything new is messed up. No more Pap smears or mammograms- I won’t go through cancer treatment again.    I. Am. Done.   Thankfully, my primary doc and case manager have been amazing.   Everyone in that office has been great. And, the doc is leaving, so will have to see a new one (gotta have a primary doc), but have some continuity going on there, and with the palliative folks getting on board, that should also help with the transition.

NOTE to Doctors who only see one body part:  You are part of the problem for any patient you see- not just me !   You need to talk to patients to get the whole picture before writing them off.  That other doctor whose ‘side’ you cling to has spent 10 minutes with me.  How is that very useful?   If you don’t HEAR patients, what good are you?   How much of your life do you expend just by listening? I’m guessing not much. In the meantime, shutting a patient down matters in every future healthcare decision they make. Nobody wants to put themselves in a painful situation on purpose- and YOU are a painful situation.  And any other medical people who are in contact with actual humans, take the high road if a patient is having a hard time.  It’s not personal (but can get there very quickly).  If you’ve only had 5 years of being an RN, and are a nurse practitioner, that sounds like you have ZIPPO clinical experience with more than one patient’s ‘stuff’ at a time.  It shows.  If you didn’t get laid last night, don’t take it out on me.   If your life sucks, don’t take it out on me.   And don’t blow off the patient’s ENTIRE history.  It is all connected.   Be civil.  Not cruel.

This is what you ignore, just with me:  psoriasis (autoimmune), nocturnal seizures, degenerative disc disease, degenerative joint disease (shoulders, hips, knees), dysautonomia, POTS, diabetes, GERD, history of multiple pulmonary emboli (at one time), gastro-esophageal outlet obstruction, acute kidney injury from dehydration (repeatedly), chronic pain from various causes, arthritis, history of leukemia,  peripheral neuropathy, carpal tunnel (bilateral),  progressive sensory neuropathy, severe heat intolerance, limited mobility, fibromyalgia,  limited ambulatory ‘distance’, bone spurs (neck, shoulders, hips, thoracic spine, lumbar spine), abdominal hernia of some sort (reminds me of ventral hernia I’d seen in the early 90s in a nursing home patient, but it’s a bit higher), sleep apnea,  and I’m sure I’m forgetting something.    It all effects everything else, so even if you don’t have to fix it, you MUST know about it to be prudent (i.e. not negligent).

I have had some great doctors here, but they are few and far between, and they leave.  Nobody wants to stay here if they can get away.   A couple have stayed.  I wonder about them 😉

For patients out there- the doctors work for you. Don’t put up with shoddy “care”.  Move on.   Cut your losses and run.  You deserve better- or at least to be heard.  They get paid for that.  Don’t be their victim.  Survive in a way that works for you ❤ 

January 7, 1978… The Nelson Murders, Rockford, IL

EDIT:   This post is my most viewed post.  I’d like to know who is searching for this, and why (my guess is that it’s more “kids” who remember the Nelsons).  Please leave a comment.  🙂

January 7, 1978…. it was a clear, cold winter Saturday when my grandmother (and grandfather) walked into our house and asked me if it was my figure skating coach whose 6 children had been murdered, and found earlier that morning.  I froze.  I was just 14 years old (by a couple of months), and had no frame of reference to figure out how to wrap my head around what she had just asked.  It couldn’t be true, could it?  Ann’s kids had to be OK.  I knew  her oldest daughter, Jennifer, who was 13 years old. We saw each other at the skating rink on occasion.  We knew each other well enough to know where we knew each other from- and if we’d been thrown together with strangers we would have stuck together… so we weren’t close friends by any means. But I knew her.  I didn’t know her other siblings.  But I knew Ann. I adored Ann.

Ann Nelson had been my skating coach for a few years on and off, and more recently had become my coach for private lessons.  She was compassionate (something I didn’t feel much from my own mom, though as the years went by I learned so much more about how much she DID love me- in the only ways she knew how). Ann took the time out of her evenings to call me when I was babysitting to see if I was OK.  She stayed behind from a coaching and rink staff party when I fell and hit my head pretty hard during the Spring Ice Show rehearsals in 1977.  My folks were out of the country and I wouldn’t give anybody the phone number of the grandparents I was staying with (grandma would have freaked if she knew I got hurt on her watch- same grandma who broke ‘the news’ to me), so she made sure I was doing well enough to go home when  it was time for me to be picked up. She’d already called for any available physicians that happened to be at the rink that night to come and see me in the back room where they’d carried me (I’d been knocked out cold), and there was one there- so I’d been seen by a doctor. She also was a role model.  I adored her, and looked up to just about anything she did. She had been an alternate in ice dance on one of the mid-late 1960s  US skating teams.  I still have a photo of her and myself on my dresser from 1978.

After my head reattached to my body when my grandmother asked me if the kids who were murdered were my coach’s kids, I went into my bedroom and turned on the local radio station.  That’s all that was on.  It was true. Ann’s kids were all dead, and her husband, Simon Peter Nelson, had bludgeoned them with a rubber mallet and hunting knife.  Over and over, I heard about Jennifer-13, Simon-11, Andrew-8, Matthew-7, Rosie-5, and David-3  being dead.  At first nobody knew anything about Ann, or they weren’t talking about it, so I had no idea what had happened to  her.  I was terrified she was also dead.  Being only 14, I hadn’t had a lot of experience with losing anybody I cared about, and really didn’t know how to handle it all.  But I couldn’t stop crying.

The next morning was a Sunday, so the newspaper would be a bigger edition, and my best chance of finding out what information was available.  I found out that Ann had been in Milwaukee, WI after telling Simon Peter Nelson that she wanted a divorce. Evidently, he snapped and killed all of the children, and the family dog- a dachshund named Pretzel.  He then drove to the hotel where Ann was staying, and threatened to kill her, but told her about the kids. At some point, Ann called the police and told them that her husband had told her he’d killed all six of their kids, and they needed to get over to their home.  Reports that were going around  said that in order to identify some of the boys, they needed the footprints taken at their births to confirm who was who, they were so mangled from what their father had done…. what their f a t h e r  had done.  The idea that a parent could do such a thing was unthinkable. This was the late 70s. There was no 24/7 news coverage of family atrocities.  These things just weren’t heard of unless they made national news- and those situations were rare, and not in MY city. To people I knew.

I’ve thought about Ann so many times over the years.  I’ve wondered if she’s ever had some sort of peace to continue any quality of life. I’ve wondered if she did end up getting married, as it had been said months after the murders, around the rink.  I had taken lessons from her throughout the time up to and somewhat beyond the trial and conviction.  She had seemed like herself, but I can’t imagine the agony and heartache she must have felt.  The rink had to be sort of a bittersweet place; she was in a familiar place with people who cared about her, but her daughter- a promising ice dance skater- wasn’t there.  Jennifer’s ice dance partner was there, and seeing him had to be hard.  Yet, maybe the familiarity and kids who didn’t ask questions (or some of the younger ones didn’t really understand what had happened) were of some comfort.

It was during this time that I was being ‘groomed’ for ice dance.  My mom told me years later  that Ann had called her and explained that I could be on a national competition circuit path, but it would involve a lot more skating time, much more expensive skates, and that a parent be available to travel with me. Things were different back then.  Now, the coach is considered to be the acceptable adult to accompany the kid.  Back then, it had to be a parent or relative…and my folks both worked, so that wasn’t possible.  It broke my heart to not be able to spend more time skating, but it was what it was, and I survived …but I’ve never stopped wondering how Ann is doing. Where she is. If she’s been as OK as someone could be who had survived the extermination of  her kids.  As I’ve gotten older, I’ve been able to understand the magnitude of what happened much better, and really don’t comprehend such a loss.

When I was 14, I’d already been exposed to the kidnapping and murder of an adolescent boy in our city. About a year earlier… Joey Didier was on his paper route when he was abducted, and later found dead at a Boy Scout camp about 25 miles away- he was found while I was staying with my grandparents who lived relatively close to the camp. I remember it being dark when the news told of his body being discovered, and being out in the country  near that camp.  Then the Nelson Murders (as they came to be called) happened.  In my adolescent brain, that meant that adults either snatched kids and killed them, or that parents can get mad and kill their kids.  It left a huge impression on me as well as most of the kids in Rockford, IL.   Around here, it’s one of those ‘where were you when?’ events to those in the skating community, or who were of the same ages as those who whose lives were stolen.

My folks didn’t really seem to understand why I was so upset- but I think it was more that nobody knew how to deal with that sort of thing.   It’s just  not in the Parenting 101 Manual- ‘How to Help Your Kid Deal With Parental Murders’ isn’t in the index.  I’d heard of murders among adults- but never anything where a parent wiped out the whole family of kids.  It was scary, as well as incredibly confusing.  Add to that the loss of my coach, when she eventually moved away after the trial (understandably), and I was upset for several years, though I learned to shut up about it.  But it never went away.  I still remember it every year, 34 years later.  Since moving back here, and having access to online petitions, I sign all  protest petitions that I know about when Simon Peter Nelson comes up for parole.  The city still reports those parole dates on the evening news.

I don’t know if Ann Nelson (or what she changed her name to, though it was rumored that she became ‘Elizabeth Johnson’, marrying the man she’d been divorcing Simon Peter for) is still alive. She’d be about 72 years old now, as she was 38 at the time of the murders and trial.  It’s very possible she’s still out there.  Unless her heart physically broke.  I’ve always wanted to tell her how much of a positive influence she’d been when I was younger, and how much I appreciated the time she spent with me, helping me out when I got hurt, and also  being encouraging when I was going through adolescent ‘stuff’.  I wanted to let her know that I’d thought about her, and prayed for whatever sort of healing one can get to in that sort of incomprehensible loss.  I wanted to let her know that the lousy, hurtful things that were said about her (like why did she leave the kids with ‘him’- as if she had any remote inkling that he was capable of such devastation) weren’t representative of everybody, or even most people.  Mostly, I’d want to let her know how indescribably sorry I was she had to go through that horror, and reach out to her- now that I’m an adult.

It’s been 35 years tomorrow.  I still remember how I found out as if it were yesterday.  I still have the newspaper articles somewhere, and that beloved photo on my dresser.   I don’t know how to ‘put this away’ for good- or if that’s even possible.  I do know that I wish the best for Ann,  wherever she is, and whatever her name is now…and that those lovely eternal kids have been able to rest in peace.

For those doing the searches about this, please leave a comment … I’d like to know where all of the searches are from, and what the connection and/or interest is.  I have more searches for the murders and Ann than any other blog topic I’ve written about.

Update:   Simon Peter Nelson died on June 18, 2017, awaiting the decision on his 19th parole request.   He died in St. John’s Hospital in Springfield, IL, having been moved there  5 days before his death.  The initial cause was “natural causes”.   I cried when I found out.   He caused SO much collateral damage when he CHOSE to kill his own children.  Every kid old enough to understand what had happened was afraid that mad parents kill kids.  I’ve thought of Ann so many times, and have had the photo of her and myself on my dresser for 39 years (and have no intention of moving it).   My prayers are with her tonight.   As they have been many nights over the decades.   I hope this gives her some type of ‘release’.  ❤ 

UPDATE:   I recently found out that Ann passed away from ovarian cancer in 2014.  She was still married to the same man- so for about 36 years, she was with someone she loved, from all info I have received.   I’m glad she was able to have some stability after such a horrifically chaotic event in 1978.   May she RIP.  ❤

The Death of My Best Friend…Who Waits at The Rainbow Bridge

At 2:45 p.m. today (December 27, 2012), my best friend and amazing dog Mandy died in my arms.  About 15 minutes earlier, she had been lying on her ‘TV bed’ and made a sound that was similar to those she made when she’d faint, but not as loud and only one time (instead of the usual three deep, agonized moans). I immediately went to check on her, and she was semi-conscious.  I picked her up and she began to wake up, ears perky, and  looking at me. But something wasn’t right- normally when she started to wake up, she ‘came to’ quickly and was on her feet and steady. She did go over to her pee pads and peed, but she wouldn’t leave that area- she just kind of froze standing up. So I picked her up and brought her to my recliner, to hold her and see if she’d perk up.  I decided to get her onto her comforter with a disposable underpad beneath it (she has had ‘issues’ with bodily functions after fainting).  By then, she wasn’t able to support herself on the floor, so I laid her on her recliner as I got her situated (yes, the dog had her own recliner).  I picked her up to hold her  on my lap and see what was next.  She again picked her head up, but then essentially collapsed, and began some slow, agonizing breaths that became slower and slower until they stopped altogether.  I checked her heart rate with my stethoscope. There was silence. The entire process took about fifteen minutes as she died in my arms.

I’m extremely thankful that she didn’t have any prolonged suffering; just this morning she was looking at me and wanting her Charlee Bear dog treats (which she got), and eating Swedish meatballs (microwaved and low salt, just for her).  I’m extremely grateful that she was in my arms, and not alone or afraid. She just relaxed into my lap and let go. I told her she’d been an amazing friend and dog, and that I loved her more than I could ever make her understand, and that it was OK to stop fighting the heart failure.  I knew it had been hard for her for a couple of weeks, but she had been so alert and interested in what was going on, and had still been eating (though becoming very picky).  I’m so thankful that she took the reins, and it was fast.  I had agonized with the decision to put her to sleep last week, but unlike my last dog, the signs weren’t  so clear.  Mandy was still invested in life…until she wasn’t.  The end left no questions.

I’d called my dad when I noticed something wasn’t right, and he came over as fast as he could- thinking at best we’d be taking her to the vet to be put to sleep if she was still ‘not right’, or at worst to the animal crematorium.  I also called my birth-mother. She’s been keeping up with the gradual decline. Mandy  was ‘gone’ when dad got here, which was OK, since it gave me a few moments alone with her during that time when everything changes and the order of my world began the process of adapting to the void left behind without her.  I know it’s a process, and that I’ll be a mess on and off for a while.  I’ll miss her for a long time, just as I still miss the one before her, and the one before her.

I can’t explain in human words how much I loved that dog.  There is no ‘dog-language’ to explain how important she was as the one living thing I saw more than anybody else. Being home 24/7 about %98 of the time, she was my sole companion and closest friend.  All I could do was to do all I could do, and I did. I have no regrets about the level of treatment for her congestive heart failure. I have no regrets about letting her lead the way as far as when she was ‘done’ (and she was quite decisive 🙂 ).   I only know that there’s a hole in my heart left by her absence that will be raw for a while.  I know I’ll get another dog, though none of my dogs have ever replaced her predecessor. They just grew in my heart in their own way.

Thanks to the vets and staff at the Mulford Animal Hospital in Rockford, IL.  You have been so caring, and kind.

Mandy Bluebonnet Tumbleweed- my forever friend, who never let me down and always lifted me up. ❤

Mandy Bluebonnet TumbleweedMar. 28, 2001- Dec. 27, 2012

Mandy Bluebonnet Tumbleweed
Mar. 28, 2001- Dec. 27, 2012

 

"Mandy

And You People WORK In The Emergency Room?

Early on when I was starting insulin I had some learning curves in the area of low blood sugars (hypoglycemia). I’d been given the diabetic teaching about what to do, and I’d been an RN for 22 years by the time I started on insulin.  Generally, I did well at home getting my blood sugars back up with regular soda or glucose tablets/gel.  One day, nothing was working. I had to call 911 when I hit 37mg/dl, and couldn’t get it to go up no matter what I did.

The paramedics got there, and I was still in the upper 30s.  They gave me more gel, and got an IV going in the ambulance.  I was still conscious and able to talk to them, but I felt BAD. They  radioed ahead that I was coming, and unfortunately I had to go to the closest ER which was notoriously horrible. En route, they gave me an amp of IV dextrose (D50). I had my purse with me that had my backup glucose meter and change for the vending machines. That proved to be incredibly important.

I was given another amp of D50 , and my blood sugar went up to 128mg/dl.  The nurse  (who rarely made eye contact, and just muttered as if I were the most ridiculous thing she’d seen come through the door all day) said she’d called a cab for me; they’d be there in 45 minutes.  I knew that I had to have some source of protein and/or fat to keep my blood sugar from tanking again. The basic information for hypoglycemia says that a snack is needed if the next meal is more than 30  minutes away.  Evidently the EMERGENCY room people didn’t know that basic information.  Straight glucose will spike and then drop. That’s just how it works.  I was sent to the lobby to wait.

Within about 10 minutes, I could feel my blood sugar drop.  I checked it, and it was in the 70s. I got a Coke and some Starburst candy from the vending machines. It wasn’t helping. I got some peanuts to help my blood sugar stay put.  The peanuts didn’t help.  My blood sugar was in the 50s by then.  I went to the triage desk and told them what was going on. I was told I’d already been seen, and a nurse might be able to get out and check on me in a while. Really?  I’d been brought in by ambulance for hypoglycemia, I was bottoming out again, and I was thrown to the whim of some nurse who might get to me?  I was safer in the cab.

I managed to stay in the 50s until the cab got there, and got home where I could work on evening out my blood sugar on my own.  The ER obviously wasn’t going to complete the process with protein/fat sources.  I got some peanut butter, and that helped.  Now when I go anywhere I take glucose tablets or gel and portable peanut butter.  I make sure my blood sugar is in a range that lets me function before I eat the peanut butter, or it will slow down the glucose’s ability to work. The duration of action of D50 is dependent on the degree of hypoglycemia (and the symptoms of low blood sugar are different for everyone at different levels of hypoglycemia).  One person can be unconscious at 40 mg/dl, while someone else can be talking at 30 mg/dl…both are in severe hypoglycemia and need immediate treatment.

I learned a lesson about the emergency personnel’s lack of comprehension on how fully to deal with hypoglycemia.  I have to take care of myself even IN the emergency department at a hospital. At least the shoddy one.  I can’t depend on anyone to help me; I have to be prepared and advocate for myself.