The Inconvenience of Healthcare AKA, Making a Big Deal out of Nothing At All

*Never doubt my love of Air Supply.
**Back Story: If you’re new to the blog, I was diagnosed with metastatic thyroid cancer in 2015. I had a tumor that wrapped around my throat and went into my mediastinum; the cancer broke through the capsule of the tumor and went into my lymph nodes. I had a total thyroidectomy (TT) in 2015, and have been on thyroid replacement hormones (TRH) since then (Armour Thyroid). After firing my first set of doctors (oncology, ENT, and endocrinologist–the oncologist didn’t want to see me back for any follow-up care for a year, which my PCP didn’t appreciate; the surgeon became out of my insurance network; the endocrinologist miscommunicated a medication dosage to her staff, and almost killed me), I wound up switching all of my cancer-related care to Barnes Jewish Hospital’s Siteman Cancer Center, where I’ve remained since 2016.
Surgeon: “You need to visit the oncologist for updated testing; it’s been 2 years, so you’re due.”
Oncology Nurse: “Please come in for a consultation!”
Me: Has a day off, arranges schedule accordingly (I work 40 hours a week, and have a 45-minute commute each way. I stay busy. For this appointment, I was going to have my son with me, but whatever–we’d make it work).
Oncology Nurse (2 days before the scheduled consultation): “Oh, no, we don’t want to see you for a consultation until you get all of these tests, which will take an entire week to accomplish. Let’s get this scheduled.” This testing involves 2 days of injections, plus one day of radiation (tracer dose), plus 1 day off (because I can’t be around pregnant people), and then a day of labs and a full-body scan….which didn’t work on me, the last time I did it, and I wound up having to have a very expensive PET scan….so I was trepidatious, to say the least.
Me: Arranges appropriate time off of work; arranges childcare. Gets everything scheduled and gets everything approved through office (which couldn’t come at a worse time, given my current workload). Gets emotionally prepared to be a pincushion for a week. Informs family of process to come, and struggles with ensuing anxiety.
Oncology Nurse: “Oh, no, wait, we don’t want to do any of this testing until we have a consultation scheduled.”
Me: “ARE YOU KIDDING ME?!?!?!?!?!?!?” LOSES MY TEMPER on highly-degreed individuals who have obviously forgotten that I AM A HUMAN, and I am more than the stupid disease that has been hanging over my head for 3 years!!!!! “Could you NOT have decided to do the consultation first, like we ORIGINALLY SCHEDULED, before putting me through all of the hassle to put a very busy life on hold for a week? Could you maybe have REVIEWED A CHART and a medical history, and REMEMBERED a few key details?!?!?! Who decided this?!?  Who decided to do one thing, then another, and then the first thing, after I already rearranged my life?!?!?! The Nurse Practitioner? Can I speak to her?!?!?!” She takes a message, and says the NP will call me back.
Me (super-mad): Calls surgeon who sent me back to oncology in the first place; gets favorite nurse on the phone. “Lisa? Can you help me? Can you talk to them and figure out the why in what the heck they’re doing, since your MD sent me back to that office in the first place?!?!?” She agrees to call them; she was out of the office when I was told to make the oncology appointment, and she’s aggravated that the MD forgot to explain everything to her. She’s been amazing. She can’t help what happens next.
Oncology Nurse Practitioner (now I’ve moved up the chain of command; my phone was IN MY HAND and went to voicemail, and this is what I got): “Mrs. Cooley, the insurance company won’t cover any of the testing until you’ve had a consultation.”
THEN WHY DID THEY CANCEL THE ONE I HAD SCHEDULED IN THE FIRST PLACE!!!!!!!!!!!
I am so sick and tired of the medical BS that doctors put people through, because somehow, in all of this, they forget that we are individuals who put our actual lives on hold to deal with these things that come from out of nowhere to sideline us and our families!!!!! It’s been 12 hours since my conversation with oncology, and I’m STILL mad. It’s an endless cycle of bad communication, and it’s a small wonder that insurance companies are now basically practicing medicine without licenses in order to dictate the course of care/medical authorizations. IF THE DOCTORS THAT ARE RESPONSIBLE FOR THE CARE THAT AFFECTS THE QUALITY OF OUR LIFE CANNOT EFFECTIVELY COMMUNICATE WITH EITHER THEMSELVES OR WITH THEIR PATIENTS, what hope do we have for our medical well-being?!?!
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I don’t think it’s too much to ask, for a doctor to review at the very least, a list of the patient’s diagnoses before they walk into a room for a consultation or order a test…but guess what? They’re so over-scheduled that they don’t have time. BUT, they’re so over-scheduled, because the insurance contracts reduce their allowed amounts to the point that in spite of popular opinion, doctors and hospitals generally make just enough money to make a profit, or even to barely meet costs. My orthopedic surgeon–you know, the woman who was responsible for cutting my feet open and rearranging the tendons so that I could relearn how to walk properly–was allowed maybe 10 minutes for each visit (actually, I think it was 4 minutes) by her overseeing medical group. 4-10 minutes, to make sure that surgery is necessary, that 4″ of incisions are healing properly (mine didn’t), to decide what steps need to be taken–she has 4-10 minutes to make decisions that will affect me for the rest of my life. Me, and the 50-90 other patients that she’ll see in a day.  Fortunately for me, my ortho was AMAZING, and her staff was phenomenal….not every MD is as dedicated, and not every MD can handle the workload they’re assigned (patients, documentation, insurance reviews–it’s more than the average patient understands).
ARE THEY KIDDING US?!?!?!? Are they kidding the doctors? They didn’t sign up for this; they signed up to help people, not to treat them like a cattle call.
But there they are, making decisions, saving lives, and leaving a trail of confusion and frustration in their wake…
At this point, I’m not sure what’s more frustrating—the doctors, the insurance companies, or the diseases that exist in the first place.
I was whining on the phone to my mother last night (God love her, for listening to me), and she pointed out (very gently) that since my thyroid was ripped out, my ability to process my emotions has been greatly affected. I detest admitting that she is correct, but it’s true. I struggle with being angrier when I’m mad, with being deeply depressed when I’m sad. There’s no happy medium with my emotions, and it makes things much more difficult. There are times when I’ve wondered if I’m straight-up bipolar, or on the spectrum, or if I’m just permanently screwed up from all of this. Maybe it’s PTSD on steroids, or maybe I’m just a terrible person. I don’t think it’s normal for people to stew on things like I do, or to have the internal (and sometimes external) monologues that I have to sort things out. I don’t want to admit that I’ve changed, but it’s true: I’m different.
I don’t know if I’m more honest, or if I’m just, frankly, more of a bitch. I don’t know if I’m more unfiltered (because I don’t have the patience to wrap things in snowflakes for the general public), or if the more choleric side to my personality has somehow mutated, but what I do know is that I am sick and tired of the hamster-wheel that a chronic illness put me on.
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I like people less. I have less patience for people. I like the fact that I sit in an office by myself, because I don’t think I can deal with the anxiety and stress that dealing with the public puts me through. I don’t like getting out of my familiar, and I don’t want to do it. When doctors lay out a course of treatment or protocol, I will latch onto that, and Type-A get it scheduled, and God-help-you if you get in the way of MY PLAN.
On the plus side, since my whole cancer debacle, at least you know when you ask me a question, you will get the whole truth, and nothing but the truth, once I’ve warmed up to you and feel like I can trust you with the unfiltered version of me. That takes a while–I’m not as easy of a person to get to know as one would think at first.
I think the thing I’m the angriest about is that I have an incredible amount of anxiety any time I have to deal with the oncology department. I can’t explain it or make it go away; just knowing I have to go back there seems to undo me, and I had just gotten it into my brain that this was actually happening again. Surely I am not the only person in the world who deals with this?!?!?  I had just made peace with it all, and had made my plans accordingly; as aforementioned, I do NOT like it when my PLAN gets messed up or taken out of order, LOL. That’s not doing me any favors in motherhood, let me tell ya’. Am I crazy for being this aggravated about this one instance of medical miscommunication?!? Or should we all get this mad, and maybe make something happen from it?
I know the “right” things to say, here: “God has a plan.” “This will all get worked out.” “Trust Him with your anger.” “Be angry, but don’t sin (stop swearing!).” “Stop ranting (that’s part of my monologue-ing)”. “It’s still the good kind of cancer, right? Be grateful!” Blahbaty-blah-blah. And yes, I’m praying about it..sort of. It’s one of those throw-up-your-hands-and-yell/pray kind of prayers. 🙂 I do that a lot lately.
Healthcare in this country has got to get figured out. I consider myself to be a pretty informed patient after almost 20 years of working in this industry, and if this kind of confusion in healthcare is “normal,” WHAT IN THE WORLD is going on? What have we come to?!? And what are we paying for?!?!?!?!?

#MeToo verses #IAm…AKA, “My Songs Know What You Did in the Dark…”

Luke 12:2-3 “But there is nothing covered up that will not be revealed, and hidden that will not be known. Accordingly, whatever you have said in the dark will be heard in the light, and what you have whispered in the inner rooms will be proclaimed upon the housetops.”

Everything in darkness will be brought into the Light…isn’t that an Obvious Truth that we should all be familiar with by now? We get away with NOTHING in the end…or sometimes, in the middle.

When I was a kid, I swore that God had some kind of hotline to my mother. She KNEW, not from the look on my face, but by the tone of my voice, if I’d lied about something. It was the craziest thing, and now, as a parent, I get it. We know our kids better than they realize. Yesterday, I picked my 4-year old up from school, and he said in a little, panicky voice, “Have you talked to Miss Leslie?!?” I hadn’t, but I didn’t need to, did I? I knew from the look on his face and the tone of his voice that he’d behaved badly (it couldn’t have been too bad, because she would have messaged me). He told me exactly what he’d done, because he knew I’d figure it out, eventually.

Society needs to get that point: It ALL gets figured out, eventually.

Headlines were made recently when our governor was outed as having had an extramarital affair back in 2015. He had already dealt with it internally with his family, but now the media had a hold of it, so it’s being excavated all over again. Apparently, the husband of the woman he had the affair with, was getting pestered by the media to dish the dirt, so he came out with the story, and now the governor has to address it…as does his wife. Even when we’ve been forgiven, sometimes the consequences come back years later to haunt us….

But should they?

The internet is full of headlines about men behaving badly (and some women). The #MeToo movement has grown wings, and women everywhere are coming forward with their stories of sexual harassment. Many of these are just that—stories—and cannot be corroborated as anything more than he-said-she-said. In fact, once an accusation is made, a career is seemingly over. This strikes me as overkill, but before you eviscerate me, let me explain:

Find me a woman on this planet that has never, EVER, had a man make an inappropriate comment toward her.

I don’t know of a single one, based on how far-reaching I’ve seen some of these stories.

Being forced into a physical encounter is one thing. Having a guy catcall you as you walk down the street is another. Both things are being labeled as “sexual assault,” and without any further explanations, accusing someone of such can be easily misconstrued.

As a young woman (in Bible college, of all things), I was nicknamed “Hoots” by a member of the basketball team, who felt the need to comment at any given opportunity about the size of my breasts. This was demeaning, rude, and embarrassing. Should I name him? Should I name every other guy who felt the need to comment about my body? Should I talk about the shame I felt? Should I talk about the confusion I had, wondering why in the world this was “acceptable” behavior? I guess I could. I guess I could track him down, I could track down the others, and file suit. I could write articles naming them, and bring them embarrassment and shame like they brought me. Would it be justified? Maybe?

It’s been 20 years since I was in college. Those guys have families. I have a family. I’m sure those guys are all different men, and if they’re not, well, that’s on them. God can take care of them. I’m not going to be their judge and jury, and forgiveness has long been issued. However, I can take that experience, and use it to educate my son (when he’s of age) that you don’t treat a woman that way. It’s a learning experience that is not lost on me as a mother of a boy.

Over the course of the past 2 years, I’ve gone to several people affiliated with my alma mater and discussed their culture of sexual harassment. My alma mater has repeatedly hid their head in the sand about several stories of harassment and assault. Rather than acknowledge the past, they’ve simply remarked that they will try and improve in the future. This is not the best solution, and I don’t accept that it’s “better than nothing.” However, I do believe that per the verse I quoted in the beginning of this blog, truth will out, and our stories will be told. Patience, as they say, is a virtue.

My point in sharing my stories with my alma mater has not been to punish the men in the past who made poor choices. The goal in sharing #MeToo with my college is to teach women that they do NOT have to wait 20 years to speak up against sexual harassment. They can speak NOW, and they do not need permission to do so. Leadership cannot harbor the people who do these things, be they male or female, and ignoring a culture of harassment encourages MORE harassment. I don’t feel that names need to be named, in the stories of 20 years ago. However, if that story from 20 years ago helps the girl who was groped by a student in the back of the classroom YESTERDAY to go to leadership and have the offender punished, then YES, tell your #MeToo and shout it from the rooftops. Stop making people feel ashamed for what others have done to them. It’s time to make the current harassers feel ashamed. It’s time to make the people who cover it up, feel ashamed. It’s time to STOP CREATING A CULTURE THAT SHAMES VICTIMS. It’s time to encourage people to speak up when they have been victimized, instead of 10, 15, 20, years later.

That being said, I do not believe sexual harassment is a reason to end someone’s career. I don’t feel that telling the story needs to be in such a way that a crime from 20 years ago ends a life that’s been built today, unless there is corroborated proof. Anyone can say someone did something from 20 years ago that affected your life. Naming names without proof, however, is a dangerous thing, and I think it’s something that is going to have some serious backlash. I can say that Joe Snow attacked me in a parking lot 20 years ago; I can publicly out him, but there is absolutely no shred of proof. It brands him; it makes him guilty until proven innocent, and I think as a society we need to be extremely careful in doing that with any kind of criminal. Joe Snow (not a real person, of course) might be a jerk. He might be a reformed family man. He might be any kind of a person, but he doesn’t deserve to be punished for a crime he may or may not have committed based on unsubstantiated words. Michael Douglas came forward recently, stating that he had been contacted by a reporter that wanted his comments regarding an accusation of sexual misconduct (that can be SO broad-sweeping, right?!?). He decided that rather than comment, he would come out and directly make a statement prior to the running of the original story. He stated the accusation, denied the accusation, and made some really great points in explaining his side of the story. Do you think anyone will hear HIM? Or will they see, “Michael Douglas” + “Sexual Harassment,” and make their choice that he’s a miscreant? It’s thin ice for the accused, and we have to be careful.

Again, I believe in sharing the stories of 2, 10, 15, 20 years ago. I do not necessarily believe in sharing the names, unless you have absolute proof of something that has been done. It’s far too easy to create this movement that’s full of unsubstantiated claims, and then cut off your own feet because of hyperbole. It’s what the #MeToo movement is in danger of. It’s a trending topic that should be much more than a trend, but without substantiation, that’s as far as it will go. It’s time to make real change, which can only come from facts.

People need to live in a culture of understanding that things done in secret will be brought to light. The harassment of 20 years ago will come to light. The affair of 2 years ago will be brought to light, whether you’re an ordinary person, or a governor, or a President. We live in an age of technology where everything is archived. Everything is accessible, we have a footprint, and it’s aaaaaaalllllll out there. Nothing is secret, and in today’s world, that’s truer than ever. We have to be accountable for our actions, and because God is Who He is, we have to be accountable to Him above all. Even without the cyberworld, God is God.

Jeremiah 23:24  “Can a man hide himself in hiding places so I do not see him?” declares the LORD “Do I not fill the heavens and the earth?” declares the LORD.

He sees us. We have to live an exemplary life, so that when the past tries to haunt us, there’s nothing there to trip us up. If there is, there’s forgiveness…but that doesn’t necessarily mean there aren’t consequences. Our dear Governor is seeing this truth today—he’s forgiven by his wife and by God, but the State of Missouri may not be so kind, and his reputation is tarnished.

He’s just like the rest of us. I don’t want my high school hijinks coming back to haunt me. I don’t want the inappropriate things I’ve said, to come back to haunt me. Could someone accuse me of inappropriate behavior? I don’t think so, but I guess in today’s world, anything is possible? We’re to live our lives in such a way that when such accusations come against us, they’re immediately disregarded, because of the standards by which we live. That’s a difficult thing to do, but in today’s world, it’s more necessary than ever. Daniel, in the Old Testament, lived a pretty great life as far as standards go: “Then the high officials and the satraps sought to find a ground for complaint against Daniel with regard to the kingdom, but they could find no ground for complaint or any fault, because he was faithful, and no error or fault was found in him.” Daniel 6:4

“No error or fault was found in him?!?!?!?!” No one could say he had any skeletons rattling around in his closet! That’s pretty amazing. That’s The Gold Standard. And that’s also where grace and mercy come in, for those of us that fall short.

There’s room for grace and mercy in the #MeToo movement. There’s room for awareness, for positive change, and for education. There’s room for FACTS in the #MeToo movement, and I encourage those that support the movement to reiterate the importance of such. My biggest hope for the movement is acknowledgement, education, and improvement….that boys and girls would be educated that they are valuable and worthy of respect…that we would learn the beauty of boundaries, and the sacredness of these bodies we live in. There’s more to the #MeToo movement than the media portrays, and it all starts with viewing ourselves as unique, amazing creations of a God Who values and loves us. Once you understand your worth, you understand that you are worthy of protection, and that those around you are worthy of honor…I want to see this restored in our young people. We are the temple of the Holy Spirit…we were created by a God Who loves us with all of His heart, who gave His only Son for us. We are individual reflections of Who He is.

I don’t want to be a #MeToo.  I want to be an #IAm:

I Am loved by God.

I Am His unique creation.

I Am His child.

I Am who He made me to be.

And to that, I would like to hear an entire generation of young men and young women echo back, #MeToo.  

 

Recovery

*Pardon any spelling errors. I’ve written this on my tablet, and I tried to catch everything, but I’m also on pain meds and trying to chase a toddler. Give the Grammar Geek a break on this one, LOL.

So, I’ve had a few people ask what in the world is going on with me?!? Well, surgeries 12 and 13 took place in November and December, and I’m in the recovery process. I had bilateral tarsal tunnel surgery and a plantar fasciitis (sp?) release, and a scar ressection on my left foot.

*Photo is 5.5 weeks post-op on right foot; I rejected the “dissolvable” sutures on the right foot, so the incision has stayed “open” since then. Basically, I’ve had a 5.5 week-long allergic reaction, which is not awesome. It looks really, really good, but is having a difficult time completely closing due to masceration. My left foot is 6 days post-op, and they used a different kind of dissolvable suture, so I’m looking forward to seeing the difference when they take the stitches out, hopefully, tomorrow.

How does this happen? Why did it happen? And why in the heck have I had so many darn surgeries in such a short amount of time?

My first surgery was complex wisdom teeth removal in 2004.  Since then, there have been 12 more surgeries on various areas (mostly abdominal), which is a lot over the course of 13 years. 13 surgeries–that averages out to 1/year, except when it’s not, and I have a year like 2013, when I wind up having 3 procedures within 6 months.  It really isn’t that much, compared to some people I know, but it sure sounds that way.  Each surgery has been difficult (we’re not made to be cut into), but most of them have had a pretty easy recovery time. I have tried to schedule the bulk of things around my work requirements, but occasionally, it hasn’t been possible. For these surgeries, I scheduled them around Thanksgiving and Christmas Break, so it has worked out.

The biggest wrench in the works has been that Jericho is ALSO on Christmas Break, so I’ve been in charge of him while I’m trying to stay couch-bound. That’s been a challenge, but fortunately, several friends have made time to come visit and lend a hand, or just make me laugh. 🙂 Things like this are why it is so important to build relationships; you never know when you can bless someone, or when you will need someone. With my work schedule, it’s hard to be the blessing to others that they have been to me, honestly…but I want to find a way to make that impact. Time really is the best gift you can give someone. 🙂

I’ve got maybe 5-7 more weeks of recovery. At this point, I don’t have to have physical therapy, but I may be seeking a second opinion just to rule that out. So far, my right foot, while hideous, is feeling better since I’ve been forced to rest it during the recovery of my left foot. Before that, though, it was really bothering me, and I am wondering if I gave it enough time before moving on to the surgery on the left foot? Time will tell. It’s not like I’m running a 10K anytime soon (or ever), but I do love to walk, and this holiday weight gain is SERIOUS when I’m just sitting on my ever-expanding butt. 🙂

And there you have it. Tarsal Tunnel is like Carpal Tunnel, but in your feet, which sucks. That’s what I’m recovering from. Pray for my husband & I, because this is stressful. I’m overwhelmed, as is he, and it kind of feels like the house is falling down aound my ears. It will be okay, but it’s a lot to deal with.

My neighbor is hosting some insane mega-party for New Year’s, which is the first time she’s ever done so. I’m not too thrilled about it (we live in an attached townhouse), but maybe it’s indicative of changes coming for 2018. Maybe it’s a sign to not take things too seriously, or to try something crazy or different. Maybe it’s a reminder that life is short–too short to spend waiting around in recovery, but long enough that you want to make sure you’re fully healed before jumping in for the rest of it with both feet broken?

Maybe I’ll blog again before Monday, but maybe not…If I don’t, have a blessed, whole New Year full of love, expression, and of getting to know the Lord in new ways. May you have fun, be safe, and remember the basics of toddlerhood: Wear your shoes on the right feet, share your toys, and don’t bite your friends.

Peace Out, Netskies. Have a Happy New Year!