Help for Healing

Bitter & Sweet, living daily with grief


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Yearly Physical

I have my yearly physical in two days and I’m dreading it. Let’s see…

I had foot surgery seven months ago and my foot pain is worse than ever. It’s taken this long to end up in a situation where I have an appointment with a second surgeon who is probably going to tell me I need a second surgery. That’s ok, but frankly it should have been last December. Seven months of nonsense and chronic pain.

I do want to pick her brain about the latest treatment the FDA just released in February for chronic, refractory depression. It made sense to me to wean off all the meds I take for that so I can develop a baseline. I’m doing it properly- very slowly over time. I already see a difference though. There’s an increase in crying and a decrease in tolerance for stress. Not a surprise, but I wish I had something happier to report.

My guess is I’ve also gained twenty pounds since last year and believe me, you can tell. I’ve weaned myself off my supplements to get a better baseline for that as well. I was intending to eat more healthy and get off the pre-diabetic status. I’m going to plead with her not to even test my blood. I’ve gone the opposite direction. I can’t even imagine what my levels are like, but my weight is an indication of what it would show.

Sigh.

I’m hoping that Tim has off work though so he can go and meet my doc. She will be thrilled about that. Last year we had fingers crossed that he was going to stick around and continue to be who he seemed to be. That is the one bright spot I will be happy to report on. He treats me like a queen!

Future blogs will probably discuss the new treatment out there when I have enough information to write an educated paragraph or two. In the meantime, I will just keep hoping to somehow make some progress on these long-term issues I have. Gotta love the aging process!


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Dying in America

I have been reading this mammoth 506 page document referenced at the end of the blog. I admit some of it I read and get the general gist but I couldn’t parrot back the details.

Other times, I feel like I am reading the biography of my father. All of the death experiences I have had with loved ones as well as my own dealings with the medical system certainly resonate too.

It’s strange because I’ve built my business, lectures, etc. around my hard-learned life experiences. I’ve probably said a thousand times that our medical system is broken and I would have no idea how to fix it. Now, reading this work that was published in 2015, it is all there in black and white. I understand slightly better WHY it is broken. I understand a teensy bit HOW it might be fixed.

But mostly, even though it is incredibly validating to read that I actually do know what I am talking about, it is beyond maddening that this stuff is real. It is so lacking in common sense, it is incomprehensible things are allowed to exist the way they are.

Reading on the Kindle platform, I am able to highlight things as I go. I am also able to add “notes” that store in the relevant sections of information. I am like a broken record in my notes when I start with, “This is the like the time with Dad when…”.

There is a plethora of research to back up the usefulness and credibility of end-of-life care. Yet the statistics keep bearing out that most folks don’t die the way they wished. And those that get palliative care only get it briefly at the very end of their lives. Getting it months sooner would be ridiculously more beneficial to the patient and their families. And the big whammy? That actually costs much LESS money.

I have had so many clients and close friends lose people dear to them. Even though they know what I do, most people think they understand what is happening and what their rights are. I hear the horror stories afterward and I want to scream out loud. It didn’t have to be that way!

Yet this will continue, probably throughout the rest of my life on earth. My business won’t make it and my heart will keep breaking because folks (medical and lay) don’t understand death, and don’t understand there are other ways to let things happen than the way they normally fall out. In part, because we still just don’t want to talk about it or deal with it. And we definitely don’t want to feel like we have failed our loved ones in any way.

Even recently when I was at the statewide palliative conference, as I told my story those folks were saying things like, “How did you even know to call the Department of Health?” It makes me sick to think of how many people, every single day, are bullied into choices not in their best interest. And worse yet, they don’t even know they were bullied.

I just took a deep, deep breath as I was writing this. I guess I am equally as crazy, because even though I know all of this, I am going to keep going. I will keep trying and fighting and learning and reading. I’m not even sure why, I just know my passion for this doesn’t seem to be dying.

Pun intended.

Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. https://doi.org/10.17226/18748.


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The Mighty Dollar

I hate to be cynical but…

We have laws/legislature that supposedly protects people. While that might be true, there is no doubt in my mind that a big factor (perhaps the biggest factor?) comes down to money. Almost always does.

I was at a big conference in Albany this week where we were talking about some of these issues. The example I used was my dad. I know there are assisted living facilities that don’t have nurses on staff. However, his did. Not allowing his family to provide medication was undoubtedly for money, not for his protection. How do I know? The literal first words out of their mouths at our meeting were: Now that your dad can no longer take his own medication, you need to pay our medical staff to do so. Let’s see, that is $750 more a month.

Bite me.

Yesterday, I finally got a second opinion on my foot. After 5 1/2 months of post-surgery pain, I am now told I need a nerve shot. (Ouch!) Why can’t I get it while I am already here? You guessed it, money.

DAMN THEM. Insurance won’t pay for two appointments on the same day at the same facility. I have to live in pain for another 24 hours then return to the exact same place to get the treatment I need. How is that is any way, shape or form for the benefit of the patient? If they aren’t going to get paid, they aren’t going to do it. Why shouldn’t they get paid? And why should I be in pain for a longer period of time for no good reason? No common sense. I’m right in the office but get sent home untreated.

Ticks me off. Broken systems again. Makes me sound like a broken record.

Anyway, got the shot today. We will see what happens. The opinion is though, that most likely problems will come back and I will need a second surgery. Guess what? That’s what dumb ‘ol me said four months ago. Five months of PT twice a week, all kinds of contraptions and creams that cost money, and consistent pain with no relief. For what? To end up in the same place. At least I could have had the second surgery back in December and already been recovered by now.

Sigh.

Imperfect world. Thanks for listening to the rant.


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Yes, I’m Really Gonna Try That Again

Dave has decided he wants to be a personal trainer. We won’t discuss the fact that he thinks he doesn’t need a college education. I just won’t even talk about that part because I GET TOO MAD.

Anyhow, I’ve done nothing but gain weight since a) I have a significant other and b) I had my surgery in October and my foot isn’t even remotely better yet and c) oh yeah, I love sugar.

Recently, I just got told I can walk Taffy three times a week, never two days in a row. I can only go less than a mile and I can’t go in the woods. That is the extent of the exercise my foot gets.

In a moment of insanity, I thought that I could support my son and improve myself at the same time so I asked him to come up with an exercise plan for me. Tim joined the gym a while ago and he is allowed to bring a guest so maybe if I go with him, he will start going too.

I detest the gym. I detest exercise. I really, really, really do. But Dave immediately got into it and planned my routine. We are going to video him doing the exercises because I know I won’t remember how to use the equipment. When I asked him what to blog about today, he told me to blog about this so I guess he’s into it.

Lord help me. I’m not sure when we will start, but I really need to do something. Maybe this plan will be good for all of us in different ways. If you are someone that prays, now is the time to start. I mean pray with all your might because this goes against every molecule in my body.

This is one area where the apple falls far, far from the tree. Look at how ripped this kid is!

I can’t even fathom this is my son!


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To Be Fair…

I’m not sure if I’ve ever blogged twice in one day, but I felt this warranted a P.S..

I was able to speak to the investigator that took my initial complaint. She started by saying, “I thought I would be hearing from you.”

She is a very ethical person and could not say a lot of things to me about the process of what happens. My intuition tells me she would have if she could have. The wording on the letter, while polite, makes it seem cut and dried. All I could think was that doc was having the last laugh.

She was able to verify that my understanding of what is supposed to occur is indeed accurate. There are many levels of investigation and their goal is to correct whatever errors there are. Hopefully, a doctor only needs one complaint in their career to get things in order.

She was also able to let me know that she spent hours and hours on this case like I did. She also assured me that the physician’s that make determinations did as well. I felt heard and that helps immensely.

While I couldn’t get anything specific out of this very ethical (and compassionate) woman, I would dare guess that this went further than a letter. I suspect that while it didn’t go to the very top, there may have been at least one conversation. That is a really big deal in the medical profession.

My goal was never to crucify the guy. I just want him to get what he did. I want him to understand that he was wrong and I don’t want him to do it to anyone else. I am hoping he will change his perspective on what his job is as a professional.

I will never know if that happens, but I feel some relief in my stomach. I feel like he was at least told and informed as he should have been. What happened to Dad was taken seriously. Very seriously.

And if she is just blowing smoke, I give her credit anyway. She did a great job making me feel better about the whole process without betraying any ethics. Thank you so much! I will rest much easier tonight than I did last night.


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Why Do I Bother?

I received a letter that was most disturbing. It literally took the wind out of my sails. I felt my energy drain out of me and within 15 minutes I found myself in bed at 730 pm, checked out for the night.

It was from the Department of Health. It read like this: “Upon completion of the investigation, based on all the information available to OPMC (Office of Professions, my parenthesis), there is insufficient evidence to bring a charge of professional misconduct…”

I couldn’t believe it. And it has thrown me into another existential career crisis. This was so obvious and blatant to me, my jaw (and heart) dropped.

Ignored my dad’s request for help with his pain for four business days.

Refused to order a catheter at dad’s request, in spite of Dad being a serious fall risk due to the Parkinson’s and the nature of his infection. He even went so far as to say, “If you aren’t willing to take an antibiotic, I’m not letting you have a catheter.”

Blatant bullying behavior toward my father with statements like, “You understand this infection could kill you and you still won’t take the antibiotic?” And the most unprofessional of all, “Well, if this is what you want for your life, peeing your bed, going to the bathroom every 30 minutes, you just keep right on refusing the antibiotic.”

Requiring a conversation with the Hospice CEO before agreeing to a catheter, but refusing to read the texts that came directly from that CEO.

All of that is disgusting, but could be stretched to say it’s a matter of opinion if you really want to go out of your way to defend him. But what is NOT debatable, is the professional, ethical and legal responsibility of a doctor to RESPECT A PATIENT’S WISHES AND RIGHTS. Dad had his ducks in a row. He had a legitimate, accurately completed MOLST form. It is without doubt a clear expectation of every medical professional to respect that. So many more details I won’t take the time to write.

This doesn’t get easier with time. If fact, the more times the ball is dropped and justice is not done, I get more and more angry.

Why do I bother? Yes, because it’s the “right” thing to do. Honestly though, I spent hours and hours documenting what happened, filling out the proper forms, and speaking with investigators at length. I was told that this case would most likely go very high up the chain because the behavior exhibited was of such a serious nature.

And now this.

Nothing. How do I not throw in the towel like most people do? Why should I be the exception and continue to fight and never give up? I am seriously questioning if the things I pursue are a good use of my time and energy. I would not apologize for being emotional about my loved one, but this was not about that. There were repeated unethical acts against Dad and something drastic needs to be changed.

But it’s obviously not going to happen. Not on a professional level, not on a state level. And even the facility has chosen to keep him employed in spite of the havoc that was caused by his behavior. And oh yeah, a man more than worthy of an honorable and peaceful death got nothing of the kind.

I’m pissed. I’m disgusted. I’m crying. I’m angry. Disheartened. Wondering if I should even bother anymore. I’m bitter – that grieving my father has been more painful than I could have imagined and now AGAIN, it’s clouded with this utter nonsense.


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Agony of De-Feet

I have been told throughout my life that I have very pretty feet. It’s a consolation for having a stomach that makes everyone and their sister ask me if I’m pregnant. At least my feet are nice. I have to say though, they definitely have taken a beating.

Remember this from 2012?

Darcy's foot xray

That picture was worth re-posting. That was David’s 10th birthday when I stepped on a nail when doing yard work. (No, I obviously didn’t have shoes on. Did you have to ask?)

Two weeks ago I had a second foot surgery. My doctor asked me if my surgeon knew how I was. You know, never stopping or sitting down. I told her of course he did because he did my other surgery. Besides, I’ve slowed down a lot over the years.

Today I went in to get my stitches out. I knew it was going to be ugly because I know what a baby I am. What I didn’t expect was how awful it looked. I had Tim take a picture because I knew you would want to see it too.

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First of all, it makes my foot look ginormous. They are actually not very big. The marker is from the doc when he did the surgery. All the purple though, is bruising. No, it usually isn’t that bad for most patients.

I don’t mean to be a bad patient. I really don’t. I’m not trying to be a hero. I don’t want any more damage to be done. I was pretty proud of myself for being as still as I have been the last two weeks. But the more we talked, the doc just kept shaking his head at me. He wondered why I didn’t actually follow the written instructions he gave me.

The second week, I just assumed things were “as needed” (even though it wasn’t written that way) so no, I hadn’t been taking the anti-inflammatory medicine three times a day. No, I haven’t been icing twice a day. I wonder why the foot is swollen and inflamed?

Yes, I did go to Dave’s cross-country meet by myself, on crutches, in the rain where it was so muddy and slippery people were falling. But I couldn’t miss it, right? And yes, Tim and I painted the bathroom last night and Tim doesn’t do trim so yes I had to be on the ladder.  Oops. Ok, I guess I didn’t do as well as I thought.

By the way, I was only using one crutch for the last week because it was easier. Turns out I was using it under the wrong arm. Duh. I honestly had no idea. That one wasn’t my fault. And it’s just unfortunate that I was using it under the shoulder where I am already in Physical Therapy three times a week for it. But hey, I stopped going to therapy so I could take it easier these last couple of weeks.

Sigh.

I admit it. I’m not the model patient. But if they only knew how good I thought I was being because of all the things I DIDN’T do!!