What You Do IS Enough- COVID-19 Has Tied Your Hands

To all of the essential workers- 

You can only do what  you can do.

You are making a huge difference .

You are helping keep things from getting worse.

You were not given any choice in how this virus works.

You can’t control how it impacts a specific person.

Even what feels like a small kindness might be the last kindness someone knows- and THAT is huge.  

This will not last forever, but your work will. Every time you hold a hand, or wipe a tear, every time you give someone news – good or bad- the way you do that will be what someone remembers about such a horrific time.  You make the ultimate difference in the healing of a family who wasn’t able to be with their loved one.  For those who are working in non-medical areas, your work keeps those at home safe. You keep more people from getting sick.

That is one incredible legacy.    This one ratty, disabled RN would be proud to stand with you any day of the week. YOU are redefining the industry where you work.  And you are not forgotten.

“What lies behind us and what lies before us are tiny matters compared to what lies within us.”
– Ralph Waldo Emerson

Your Words Matter, Lady I Knew From My Childhood Church

Written after a stunning and disturbing conversation with someone I’ve known for over 45 years.  The person I talked to that day wasn’t anybody I recognized, and it jarred me to my core. I’ve cried so much over this.  But sometimes, it’s time to wish someone well, and exit the toxicity.  I wonder how much of any of our past interactions have been masked to hide the intensity of the divisiveness.  It’s so sad.  I wrote the letter not with an intent to mail it (no point in sending something to an elderly woman with a healing husband in a nursing home that has COVID-19 who sees nothing wrong with her views, and compares anyone with differing views as dirt on the bottom of her shoes that she wants to scrape off- there’s no reasoning with that).  Evidently I don’t have that same right to MY views as she has to hers.  I’m dirt on her shoes- not because I’m a Democrat (I’m not registered anything since mid-2016), but because I don’t tow the GOP line. She told me she doesn’t use the computer (which she’s said before), so this seemed the safest place to vent so I can sleep again.  And if she finds it, I hope it is something that gives her an idea of the weight of her words… not to be mean.

Dear W,

I hope you are well, and that H has been able to get the rehab services he needs- and has been safe.  I know this has all been so stressful. I can’t imagine the concern and sleepless nights.

Now, comes the painful part, but written in a tone of compassion and well wishes always. I’m not angry with you.  A bit stunned, and very hurt, but not angry. If I didn’t care, it wouldn’t be worth writing.

I will ALWAYS be SO very thankful for your friendship over the years.  You made a difference. I am truly grateful.  After one of our last conversations, along with one in early 2017, I am not sure I know you now. Maybe I never really did, as so much was formed on that when I was a kid.  When you said you considered Democrats to be the same as the dirt at the bottom of your shoes that you wanted to scrape off, and the 2017 reference to Mrs. Obama as the ’N’ word (I won’t use it- it’s vile and never justified in my view), I was stunned. I didn’t recognize you as someone I knew from the evangelical church I loved growing up. That was sad. It tore through my heart.  It made me question every conversation and interaction we’ve had.  How did I not know of such intense hate?

I may not like or respect Trump, but I don’t consider him to be “dirt on the bottom of my shoe”.  My specific prayer to God about Trump is “Lord, please help Trump be the president You want him to be.”.  Essentially, thy will be done.  I don’t consider him ‘dirt’, and hate takes too much energy; I have better things to do with my time. All I heard from you was what sounded like a hateful rant about something with no specifics other than a generalized view of  Democrats.  Nothing specific, just a tone of voice that was like a knife dripping with venom.  That’s not the person I grew up knowing.  And, I also thank you for that, because it’s made me more aware of my own views on a few things. And one thing is certain; I won’t initiate contact again. I won’t discuss this. It’s clear that it’s pointless.  You aren’t the only one whose blood pressure is a problem with stress. Mine can knock me unconscious. I won’t interact again with the comments I heard.  I don’t know where that came from, but it’s not from God.  I can see things I don’t respect without hate.  I don’t respect Trump, but I certainly don’t hate him.

I’m so thankful for the Bible, and the wisdom and guidance it so consistently provides.  I’m thankful that the Bible talks so much about love, and treating others with compassion and kindness. I love how it lets us know that God knows our hearts.  I love how it helps me when I feel like I’m completely alone.  I love how it is infinitely more important and stronger than humans in its influence in my life. I love how growing up at the old church shaped me;  those years were amazing, and have been the core of my being for as long as I can remember, as were my summers at camp on the staff.  

I’m not a teenager anymore, by a longshot. I have very specific reasons for my views, and base my decisions (as much as possible)  on compassion (and those who exemplify it), and mostly “as much as you’ve done to the least of my brethren, you’ve done it to Me.”.  I focus on “faith, hope, and love; and the greatest of these is love.”  I fail often in my goals of exemplifying the Fruit of the Spirit and the description of love in 1 Corinthians… but I am working on it daily. I have to focus on what God says. He’d never condone shunning people simply because of different views. HE gave us free will. Who are we to demand otherwise?  He uses all who are willing.  Face it, there were some sketchy folks He used for His purpose in the Bible. He sees our hearts.

I will always disagree about Trump’s “integrity” and I know you’ll never see any other view, so there’s no point in any discussion- and I wasn’t looking for one with a single comment that wasn’t an attack on your beliefs. And I won’t be a part of the hate towards any group of people. God created those people, too.  And what if they’re pushed away by Christians? How does that give glory to God?  I will always defend your right to your views. And I won’t be shut down with comments about your blood pressure; you’ve used that before.  If it’s that fragile, we shouldn’t speak. I don’t have any interest in  having to censor myself with someone who had been a close friend.  I guess I was expected to have your views.  When I made the very superficial, flip comment that led to that rant, I was caught off-guard with the intensity of your response- and yet it’s your view, so I have to accept that. I respect your right to it. I don’t have to agree with it. Or put myself in the position to be blind-sided again with the negativity of excluding anyone who thinks for themself.

I have met so many types of people as a nurse, and I am so thankful for that.  People are not simply labels or categories. They each have their own views that are not stereotypes- there are shades of gray, not just black and white. Many are surprising. Regardless, it’s not my right to judge them.  The plank in my eye is big enough to keep me busy; I don’t have time for the splinter in someone else’s. 

I’ve met Christians among the LGBTQ community. I’ve had good friends of many races. I’ve met “WASPs” who are some of the  most cold, superficial and negative people I’ve heard (often on TV).  I’ve known people who agonized over deciding to have an abortion, and felt such compassion for the magnitude of that decision. I’ve met people who I have nothing in common with who were kind and inclusive. I have family (biological & adoptive on both sides) who are mixed race, gay, and non-believers- and they have been incredible to know. I thank God for them, and the chance to be kind, and not the Christian they expect to find.  God meets people where they are… and I try to do the same, as best I can. He uses defective humans for His Divine plans… and I can only hope I am who He wants me to be, especially with my sponsor kids. 

I’ve met Christians who see love above all, and some who are basically in it for profit. I’ve met non-believers who have shown me great compassion.  I’ve known people (directly or ‘second hand’) who were pure evil.  And I’ve met one in particular who altered my life permanently when I was 23.  I’ve forgiven him. It doesn’t condone or excuse what he did, but it’s not my fight to punish him. Forgiveness is also an act of obedience. It’s the least I can do in gratitude to God for letting me survive that day. I focus on protecting others from Numbnuts every 3 years with parole protest letters- and I pray that the prison chaplain gets through to him.

I’ve met many people who were turned away from Christ by Christians.  My goal with my sponsor kids is that they see that they are loved (including the Muslim twins in Bangladesh). I am working hard to give them sound Christian support, and have gotten child and teen (boy’s and girl’s) study Bibles to use with little lessons in each letter I write to them. With that, I ask for the help of the Holy Spirit.  Kindness is free, even when the specifics aren’t clear. It costs us nothing but the desire to share it.  IF not, then the parable of the Good Samaritan was just a story, and not a lesson.

You said I only want to see “the bad”.  With the things I’ve been through, I’ve always tried to see the good, and apply Romans 8:28, because I do believe that God can make good out of anything, if we let Him.  I think that comment hurt the worst.  My greatest earthly happiness comes from people doing well, and doing kind things for others. I cry tears of joy when someone does well (I’m a mess during the Olympics, no matter who wins- their story and hard work led them to their dreams).  It’s amazing I don’t see only bad. The murders, rape, leukemia, disability and not being able to work as a nurse, and many other things would give me reason to do so.  But that’s not who I am. I wasn’t brought up to look for the bad.  But you think that of me? After 45+ years?  Then you don’t know me at all. I question everything about our friendship with that comment. 

When one of my sponsor kids makes the drama team, my heart explodes with joy for him. When the twins start to feel comfortable asking me questions, I am so happy they feel safe to do so.  When another asks me to pray that his goats keep “reproducing well”, I’m overjoyed that he has a little ranch going (he’s 8).  When my sensitive one needs reassurance from me that I’m proud of her, my heart aches with gratitude that she is doing well.  I don’t see their ‘conditions’.  I see that God created these 8 kids with amazing potential.

I don’t see conservatives or liberals. I see a country failing to see the big picture. We’re here together. Everybody has to make choices about what is worth destroying the country over. I don’t see anything worth that.  And prophetically, the US will fall. We’re on that path. And God will deal with things as He sees fit for His ultimate plans. In the meantime, I just want to be the best I can be with His help. His opinion is my beacon.

I was hoping that hydroxychloroquine would be a ‘game-changer’, and it was no matter that the idea was pushed by Trump. What mattered was that it would be help to those suffering.  Like everyone, I’m so much more than my views on politics- and they vary by the issue-not the party.  Yet my non-GOP views have made me dirt on your shoes.  I can’t stick around for that. I have to let you go. I’m glad for the clarity. You said what you feel. Let the chips fall where they may.  I can respect your right to your views, even if my difference of opinion is in your crosshairs. But I won’t engage with venom. 

I will always wish you, H, and D all of the best in life. I will be glad to see you in THE place of no more crying or pain when we meet again.  It’s where so much of my hope lies. It’s where the people who gave me a life of church values are waiting.  It’s where the baby I lost is- in a place where its conception by rape won’t matter. It’s where a lot of people I’d expect to see will be, and very likely some I didn’t expect to see, and some I expected to see, but won’t… because I can’t see their hearts. But God can. He knows why I believe what I do, and why I think how I think, before I even think or believe anything. His omniscience and omnipotence blow me away, as does His undeserved Gift of grace, mercy, compassion, and great hope of everlasting life through  Jesus. Take care of yourself, and know that you will always be in my prayers for peace, health, and safety.  I absolutely did not intend for one flip comment to trigger such damage.  For that I deeply apologize. 

Until the time when the earth is long in the past, where a thousand years will seem to be but a minute, I say goodbye.  The pain of that conversation isn’t fixable. And I, again, wish you and your family everything good.

Message to Young Nurses Working With COVID-19 Patients

I saw the news of young nurses (those who graduated well after 2000)  impacted by the storm of COVID-19 patients. They never knew what it was like not to have Universal Precautions as part of daily ‘norms’ at work.  They’re scared and angry, and that is so very understandable.  In normal times, all of this would be absolutely unthinkable.  But these are not normal times.  This is a global situation that was not fully appreciated until it hit US. Many warnings had been issued over the last several decades.   Mistakes were made.   In the US, we tend to think that we’re immune to things that happen in other parts of the world.  While 9/11 erased a bit of that, it has never hit us in a medical battle like this, for the vast majority of people alive now.  Viruses don’t care about what country they’re in.  Every country on the planet is trying to get equipment, from PPE (gloves, gowns, masks, face shields, etc) to ventilators.  EVERY. COUNTRY.  There is little in the way of  inventory to purchase.  Add that the US government is outbidding states’ governors, and it’s a total cluster.  I’ve been an RN for 35 years, though have been disabled for many years now. I have the ‘luxury’ of watching this, but wish so much that I could be there helping. It goes against everything in me to not be of use during this time. So, I write. It’s all I have to offer.  My mom’s grandma died in the Spanish Flu of 1918. Pandemics influenced my family in how my mom’s mom did NOT cope with the death of her mom. Her father died a year later.  She stayed broken.  She raised kids as a broken mom. None of this is “just” the current situation… there will be collateral damage.  But we have to protect the caretakers AS BEST WE CAN with what PPE is available. Now. 

Time speeds up as you get older, so this may sound like ages ago, but it’s really not.  In the mid-80s, AIDS was still relatively new, not well understood, and another cause of fear and much discrimination. It was different, as there were higher risk groups. COVID-19 just needs a breathing body.  We didn’t have Universal Precautions until 1987. There was typically one box of gloves at the nurses’ station, and those were only for “Code Browns” (a poop situation beyond the ability of one person to deal with) or massive bleeding- and that was at the discretion of the nurse.  This is when I started nursing.  It’s just how things were.  We did have isolation carts for AIDS patients, with gowns and gloves.  Masks were only used for suctioning, and face shields weren’t even imagined. I don’t remember ever having protective eyewear.   We gave IM and IV meds with syringes that had needles. Not everybody had an IV pump… and Dial-a-Flows were rationed.   We were expected to be careful.  We also had up to 14 patients on an acute neurological/neurosurgical floor on the night shift PER NURSE.   It wasn’t until 1996 that Universal Precautions became “standard precautions”, and were considered part of basic care.  I taught infection control at a nursing home in the mid-90s.  Back then menstrual blood wasn’t considered a risk, and the guidelines were “if it has not saturated the pad to the point of dripping, it can be disposed of in regular trash cans”, which stunned me back then. Now, I can’t imagine putting any sort of blood in the regular trash.  Things change.

Governors are doing all they can to get enough PPE, but when it will arrive isn’t set in stone, especially with the “eBay” manner in which they are having to purchase supplies.  The feds aren’t  looking out for anybody on the frontlines. So it’s time for ingenuity and remembering that these are not normal situations.  Normal rules are out the window in a crisis.  This is more like M*A*S*H than 2020 hospitals.  Mentality has to adjust. Some conservation now may mean even more critical availability later.

It troubles me a lot that so many people who are dealing with this crisis are going to develop (if they haven’t already)  PTSD.  The repeated stress and life-altering/life-threatening situations does something to a person.  Please reach out to someone when (not if) you are overwhelmed.  Remember that this will not last forever.  The overall percentage  of people in the US who have this now is still statistically insignificant (a bit over 331,000 positive cases right now… with a population of 330M in the US, that is %0.001).  The folks who have this are not in any way insignificant, nor is their suffering or the loss felt by the family, friends, and coworkers of those who die from COVID-19… but from a pure numbers standpoint many, many more people are OK.  With that same 331,000, 9441 have died- that’s %0.03 of those who are positive. That’s 33 times less than %1.  Just of those who are positive.  The death rate is %0.0000000003 of the total population. I know you’re still swamped and getting slammed. But feeling like ‘everybody’ is sick can be another stressor.  For those in hotspots right now, I realize that how it feels is what is hard, because it seems so non-stop.  It will get better. Not today and not this week, or maybe not even this month… but it will get better.  We will know a time when this isn’t all over the news anymore.  And hopefully, we’re better for it.  This can’t happen in vain.

So, nurses who haven’t known a time without standard precautions, hang in there.  Bring your ideas to your managers about how to conserve PPE.  When all of the patients are positive for COVID-19, how many times do you need to change gowns?  I know reusing some things sounds absolutely counter-intuitive. I’ve seen some creative things on the news from the nurses in the thick of things.  You can change how this goes with your ideas.  Hoping for more PPE is fine- just don’t expect it on a timetable that is “normal”.  Nothing about this is normal.  Including what you have to do as a nurse or other caretaker.

Would I want to work with less PPE?  Absolutely not. But there IS no bounty of  PPE now- it’s all rationed, when it’s available.  And it’s because every corner of the country is going to see this virus hit close to home.  The hotspots need things now.  Until it gets there, what else can you use? How can you change the policies for a catastrophic influx of patients?  How do you stay safe?

Time Buffers… It Does Not Heal All Wounds

Four years ago this morning, my dad called me at around 8:00 a.m.  He knew I generally slept until noon (up all night), so I knew it was something different and serious before I answered the phone.  He told me he couldn’t walk right, and asked if I could come to the house and see what I thought (have been an RN since 1985, though disabled for the last 15 years- I keep up with medical stuff by keeping myself alive).  I asked him if I had time for a shower, anticipating we’d be going to the ER, and he said yes, but don’t take too long. Dad had been having back issues and some weird symptoms on and off since the November prior to March 3, 2016.  He needed a better work-up, and at this point, the ER was our best bet.

I took my shower and packed my meds/insulin figuring that I’d be away from home for hours.  Then I drove to the house.  I wasn’t really prepared for what I saw.  Dad stood up when I came down the hallway after letting myself in with the garage door opener I kept for checking his house when he was on vacations.  Dad was standing next to the bed, with ‘balance’ that looked like someone trying to stand on an inner tube in a pool.   He had no clue where his body was in space (proprioception problem).  I told him to sit down, and I’d get what he needed.  First order of business was breakfast, even though I suggested he wait because of any lab tests  that might be done, but if I didn’t feed him, he wasn’t going to the hospital.  OK… food first.  I don’t even remember what I got for him. I do know it was in a bowl, and doubt I made oatmeal, so likely cold cereal.

His lady friend (not going into detail about her, as she was a self-serving “care taker” who was handy on occasion) came over and got some of his belongings together to take in case he was admitted.  I wasn’t going to take him home in his condition, so started getting my speech ready for that conversation with the ER doc.   I got his electric shaver and warm washcloth, as well as his toothbrush- he wasn’t going anywhere ungroomed.  Then I told him I was calling 911, since I knew there was no way to get him in and out of the car safely with what I saw of his balance issues.   He didn’t argue.  I knew he was scared.

The ambulance took some time to get to the house, as his address was in the county (by one block), and the station responsible for sending emergency help was several miles away.  They came in and got him loaded up, and I told them in no uncertain terms that we were to go to a specific hospital that wasn’t the closest.  His vital signs were fine, and he was not in respiratory, cardiac, or any other distress physically.  They agreed.  I followed in my car (and lady friend took her car).

I told the folks at the ER that I needed to be back with dad, since he tended to downplay things to strangers.  They needed to know about the months of erratic symptoms.  They also needed to know that dad would not do anything medically unless he could ask ME if it was legit.  He used to say he was getting a return on his investment in sending me to nursing school.  They let me back as soon as they had him gowned up.  He was terrified.

As with any ER, it takes time to sort through everything and get testing done.  We were there for at least 9 hours, in which time he had several tests done, including an MRI that almost didn’t happen because of dad’s claustrophobia.  He almost changed his wishes for a traditional casket burial because of claustrophobia.  They sedated him (a Benadryl made him loopy for a couple of days, so the stuff they gave him IV really made him blotto, which is what he needed so the MRI could happen).  They found some strange lesions on his spine- not what we were expecting.  There was talk of sending him home (alone), and I pitched a semi-dignified fit.  They said that the ER was for finding problems – and not necessarily to admit people. I told them of his living situation, my disability in not being able to care for him adequately when he couldn’t transfer safely, and the other safety issues in sending him home.  They did admit him, and he never saw his home of 40 years again.

I’ll never forget that day, or the 19 hours on April 3-4, 2016, just a month after he was admitted, and going a rehab facility that repeatedly blew off his complaints of abdominal pain.  On April 4, 2016,  he died after a diverticula that hadn’t been diagnosed ruptured and caused catastrophic infections in his abdomen, extending into his bladder and  filling it with gas.  He was a great dad- and I’m so fortunate to have ‘landed’ with him when I was adopted at 10 days old.  He is still missed daily, though it’s easier to remember the good and goofy stuff.  My mom died in 2003, and I couldn’t anticipate the devastation of losing my last parent, and the one who was constantly looking out for me and my best interests starting from that first day in 1963. I didn’t grow  up with siblings.  My mom did things in her own way to show her love, but dad was more open about it. We had a great relationship when I became an adult, and I could tell him anything.  When I was younger, I didn’t appreciate his work stress, or the ways he made sure that all vacations included things just for me along with general sight-seeing.  He’d go out of his way to make sure I got something special out of each trip.

I now live in his house (was also my home for 9 years as a teenager through nursing school), and I’m so thankful.  I have him, and my mom, in every room of this house, whether it’s some trinket or photo, or memories of things that we did here.  I couldn’t live anywhere else.  It’s home.  It’s my family in a house.  It’s what I have left.

When Death Steals Justice From a Murdered Baby’s Mom

This week, the mother of murdered 4-month old Paul Villareal died after a very brief, and unexpected illness.  She was waiting for the trials to start in early 2020 in five murders, including that of little Paul.  She’d been waiting since 1981 for justice to be within grasp.  She won’t see that day.  Her son Paul’s killer will finally be held to account for what she did to Paul, his mother, and entire family.

Her family is now trying to find the way to pay for the burial their mom wanted, and Paul’s youngest sister is doing her best to make sure that happens, but she needs help. While she didn’t want to ask for help, doing a GoFundMe was the most likely way to get the funding as soon as possible, so she can bury her mom, who did not want to be cremated.  I’m now asking for help as well for this family.  They’ve been through so much.

No matter how much or little folks can help, it all matters, and I know personally that the family is extremely grateful and humbled for any help.  I’m in regular online contact with Paul’s sister. This is legit.

 Whether or not you can donate, please pass the link along : 

https://www.gofundme.com/f/mom039s-cemetery-expenses

For those who are unfamiliar with the hell Jones put dozens of families through in the early 1980s, I’m including an article by the author of a book by the same name, “The Death Shift”, which is considered by the families to be the most accurate book on the hell they went through. They were interviewed for the book.

https://www.texasmonthly.com/articles/the-death-shift-2/

Jones had been due to be released in March of 2018 because of the “mandatory release” law, that was amended in late 1987, and later excluded violent offenders.

By Elizabeth Zavala of MySA— after the death of Chelsea McClellan’s mom, who was fighting so hard for the additional indictments, and a huge support to the families.

https://www.expressnews.com/news/local/article/Moms-keep-up-fight-despite-loss-of-ally-14423719.php

More background on Jones and the alleged murders of 46 babies/toddlers:
https://abcnews.go.com/US/nurse-suspected-killing-46-kids-prison/story?id=19852141

https://www.tpr.org/post/evidence-destroyed-hospital-cover-needed-genene-jones-prosecution

Well, No More Palliative…

And I’m more than bummed in some ways, but in other ways, I’m really OK with it.  But, considering where I live, and my experiences with the medical folks here, it’s not that surprising that it’s been frustrating.  It’s been 16 days since the nurse was here to meet with me for being on palliative.  I was told that the chaplain and social worker would contact me, to set up a time to come and meet with me as well.  I haven’t heard from anyone.   When I called the nurse today, and asked to be taken off of the list, she asked if something had happened, and I basically said “Yeah- nothing!”.   She told me people had been sick.  Had I known that (COMMUNICATION), I would have understood.  Why can’t someone just let a person know that they weren’t forgotten, and someone would be in touch as soon as they could.  I can understand THAT.  Even a 15 second e-mail… that would have been enough.  I could have sent my well-wishes for the sick staff  in a reply.

At the only meeting, I was basically told that there were much sicker patients than myself, and what did I want from palliative- which sounded like I didn’t belong.  The next day on the phone, it didn’t seem to be an issue, so I didn’t bring it up.   I know there are sicker people out there- I used to take care of them !   But this isn’t a competition !   When I mentioned knowing that they had sicker patients, she said that she didn’t mean it that way… OK. that’s fine.  Good to know.   *thumbs up*

Ended up OK- should I decide later on that I want to try palliative again.  But for now, I’m on my own. Again… or is it still?   I see the gallbladder surgeon on Friday (with a completely different healthcare system in town)… once the gallbladder is out, my days with doctors will be few and far between.   Seems much safer like that, and if not safer, at least much less frustrating.

“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?