Don’t Tell Me to Stay Positive … I’m Too Busy Being Engaged

If you’re like me, we often say things without thinking.

No, I’m not referring to the verbal blunders that follow us seemingly forever. I’m referring to the phrases we say automatically as part of our everyday social contact.

Nice / Awful / Weird weather we’ve been having …

Like discussions about the weather (perfect for awkward elevator discussion with people you don’t really know but are standing way too close to for way too long), there are more phrases we don’t really think about than we realize.

A perfectly polite question is to ask a person how they are … to which they respond “fine”, “okay”, “fabulous” or “tired”, “busy”, “overwhelmed”.

A perfectly polite response is to nod understandingly.

And that’s it … except the other day that’s not the response I got.

The person told me they were at the end of their rope and I probably didn’t want to get involved. I hesitated. They were right. But, being the contrarian I am, I stepped closer and assured them that if they wanted to get into it I would listen … and listen I did.

The one thing I didn’t do was tell them to “stay positive”.

All of which brings me to my current question: What is with the phrase “stay positive”?

We often tell people to stay positive, stay strong. I know I’ve said it myself. But I’ve been re-evaluating the phrase because something about it bothers me. Something about it feels like a cop-out. What happens when there isn’t anything to be positive about? Okay, maybe that’s just too dark, so let’s hold that thought for now. Trust me, I’ll come back to it.

I know we mean well when we say it, but is there a time it’s just plain irrelevant? Is there a time when being positive is even contrary to what is needed at the time? Sometimes a person just needs to gather the necessary facts in order to plot a course of action … in any aspect of their life, even their healthcare.

At the time, we don’t need or want positivity. We need answers. We want options.

Case in point: I’m waiting on some results for next steps in taking care of my health. Fact is I don’t really want to think too much on what happens next. We don’t have enough information. So, when people ask me how I am, I hesitate.

Like the person I met, I’m not sure how much they want to know … how much they want to get involved … and I don’t want to be told to stay positive. I realize it’s the polite thing to say when we don’t know what else to say.

I still don’t want to hear it because quite simply I don’t have time to be “positive”.

Okay, the thing is, for me at least, remaining positive requires a lot of energy. It’s not that I have so much negativity or anything … far from it actually. It’s just that I consider myself a careful resource manager of my own energy. Consequently, I invest carefully. Thoughtfully. Deliberately.

You could say being positive has absolutely nothing to do with what I’m doing right now.

So what am I doing?

I’m focused … engaged in my healthcare … like nobody’s business. And, I can tell you being positive has nothing to do with it. Not jumping to conclusions. Not jumping to immediate worry or panic. Not jumping to decisions just to be doing something, anything.

But also not being distracted being positive …

I’m not trying to be rude, but neither do I want to avoid exchanges and conversations with people around me. What I’m trying to do is give a glimpse into the darkness for both sides to consider next time they attempt to engage in an exchange about how they are doing.

Sometimes, it isn’t about being positive for either person.

Sometimes, it’s about listening and really talking about what’s happening.

Sometimes, it’s about being engaged in the conversation, the person.

I like to tell people be careful what you ask, you may just get it. I’m not saying if you don’t want to know, don’t ask, but I am saying consider carefully: Do you want to use one of the polite, stock, trite phrases we all use when we don’t know what to say?

There’s nothing wrong with admitting you don’t know what to say.

There’s nothing wrong with asking direct questions about what I’m doing … or why.

There’s nothing wrong with telling me you can’t get into it with me.

I’m focused on being an engaged patient and that takes all my energy. Make a conscious decision to get involved … or not … because otherwise it’s all just being polite.

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Would You Get a Second Opinion?

On a fairly regular basis, I come across something with regards to my healthcare that I don’t know or understand. I may be surprised, even vexed, or just curious and eager to learn something new. I rarely feel I’m lacking as a result.

No, that isn’t what makes me feel stunned, naive, or even betrayed.

Hands down, what does that for me is when I defend something I believe should be true and it turns out it wasn’t true at all.

Case in point: I trust that the things being tracked, the questions asked, the tests ordered, the entire visit to my healthcare professional is to provide the data we – my healthcare team and I – will use to determine next steps in the course of my chronic disease.

These are big decisions we are making; ones that affect the quality and quantity of my life. My life … and those of my loved ones …

As a patient, I once believed there is a pre-set, pre-agreed upon, best practices, set of rules and guidelines that physicians will follow because it will lead to the best outcomes of those under their care. There should be … right?

It turns out I was a little hasty in my zeal.

Let me give you a pertinent example. As someone with rheumatoid arthritis, one measure of my disease is inflammation. Inflammation means my disease is active. When it is active there is damage being done to joints and organs. There’s also a lot of pain associated with inflammation. So, basically, inflammation is a bad thing. We want to keep it to a minimum.

We want to monitor it carefully.

So far I think we are all in agreement … but, that’s where it stops, because what happens next is all up to who you have as your rheumatologist. I would understand if the reason for very different treatment (and the accompanying explanation) were the complications and conditions associated with the individual … we are all different … but that only goes so far.

I’m not referring to the medication we take to manage our disease (although methotrexate appears to be the standard go-to prior to biologics). I’m not even referring to how often we see our specialist (can vary from 3-12 months) as I suspect it’s too many patients per specialist driving the frequency rather than anything else.

No, what has me perturbed is something entirely different.

In my history of visits to my rheumatologist I have reported pain, stiffness, weakness, and fatigue greater than usual. The past month’s blood work often supports an increase in inflammation and disease activity over that time period. A visual and tactile inspection of the affected joints confirms these reports. As a result the current medications may increase in dosage, additional medications may be added, pain medications may be increased in dosage or new ones added.

Again, so far, so good … except it isn’t.

It gets worse.

Here are some things I have learnt in speaking with other RA patients:

Some patients go for lab work far less often than I’ve been told is required.

Some patients are told the exact opposite of what I’ve been told with respect to “do’s and don’ts” of medications, exercise, and alcohol.

Some patients are never given a visual and tactile examination.

I consider myself fortunate that my rheumatologist uses a variety of information sources (including me) and we have formed a two-way communication that works for us. The same cannot be said for all patients, unfortunately, as a physician practices what and how they’ve been taught and that all depends on where they went to school.

All of which brings me back to the issue of standards …

First, not everyone is going to get the same advice, plain and simple. Whether it’s because of where a physician went to school or a combination of all their experience since then, all we can expect is the very best they can give us based on their assessment.

Second, not everyone is going  get a specialist they can work with. Whether it’s because you have talked to other patients and want to try something else or you are uncomfortable with the care you are receiving, it happens.

Third, last, and most important of all, it is you, and only you, that is ultimately responsible for the care you receive. It matters not at all if you’ve read it, heard it, or even imagined it, if and when you want to try something or someone else you owe it to yourself and those around you to act.

The thing is there may indeed be an element of “craft” to this thing they call medicine and so maybe having different ways of doing things can actually be better for patients, making it all the more important you take ownership of the care you are receiving.

You are entitled to ask questions and receive answers you understand.

You are entitled to a second opinion or even a third.

You are entitled to a circle of care that you trust.

What does it take for you to get a second opinion?

After all, it is your life.

A Patient’s Call to Action: Let Me Be Me

Is there anyone who hasn’t watched West Wing?

There’s a reason this television show received 277 nominations and 87 awards in its 156 episodes over 7 seasons. Quite simply, it is extremely well written. The dialogue, characters, and themes make the series a must re-watch every summer in my home.

One of the themes came back to me recently. There is an episode where the President’s staff are grappling with the two sides of the President, to everyone’s frustration and disappointment. It’s painfully obvious these highly talented, dedicated, and passionate individuals desperately want a clear target in order to do the work they have sworn to do for the man, and country, to whom they are committed.

The only thing getting in their way at this point is the President himself.

On the back of a napkin, no less, the Chief of Staff scrawls the solution and it’s nothing short of sheer poetry: Let Bartlett Be Bartlett.

Simple. Direct. Clear.

One could also say it’s a call to action …

Here’s the thing: As patients we sometimes get carried along with our disease, the healthcare system, the drama of our daily lives. Between trying to figure out what’s going on, accepting it, and dealing with it we lose track of why we are doing what we are doing. Is it any wonder those around us are equally befuddled?

Which brings me to my question: What are we doing as patients?

We need to give clear instructions, directions, and imperatives as to what we want, what we need and what we will accept; lest we be as lost as Bartlett.

Where on earth does one start?

I like to look at things on a spectrum. So, imagine one extreme is table stakes or “not even worth playing unless this is part of the deal” and at the other extreme is not in your wildest dreams. It’s kind of like imagining the best and worst possible outcomes. That makes everything in between up for grabs.

Possible.

Attainable.

Mine.

Simply by virtue of knowing what you want, articulating it clearly, and holding firm with a ruthless conviction, we will give direction to the talented, dedicated, and passionate folks around us desperately trying to help us.

We don’t have to know everything; that includes how to manage all aspects of our disease. Really, that’s what the people around us are looking to help us do. Just like Bartlett, when you’re surrounded by good people you really just have to point the way …

We aren’t always going to be clear … sometimes we need new language, but listen when I tell you I want to know all options … not just the ones you think I want to hear.

We aren’t always going to be certain … sometimes we need a little support, but see me for the capable person I am … not just the patient that needs your help.

We aren’t always going to be able to face it … sometimes we need a day off, but allow me the tools to manage my health, my pain, my life in a manner of my choosing.

We must keep learning new ways to get our point across, keep our circle of care strong, and give ourselves time out. But, then, we need to get our ass back in the game, shout loudly “look out world, here I come!” Yes, I am a patient. I will not apologize for what I am, what I want, what I need.

If there’s one thing I’ve learned, it’s this: When you know what you want, just about anything is possible. It matters less what it is you want and more that you figure it out and then tell those around you. Only then can you say …

Let Me Be Me.

Pain Scale: Using it to Keep Score My Way

I remember it as clear as if it happened a few moments ago.

My granddaughter, all of two and a half years old at the time, laid her tiny little hand on my leg and asserted: “You’re my best friend.” Pleased with herself, she proceeded to ignore me in order to watch the rest of the room, but her hand stayed where it was …

Quite simply, she took my breath away.

We all have those moments when something unlooked for happens that is so wondrous, so fulfilling, that everything around us fades if only for a few seconds. We are caught up in the joy, the wonder, the enormity of that experience.

It’s almost impossible to imagine that there could be moments so exquisitely magical in a world where there are also moments of such darkness, such pain, such utter despair.

That’s just the life of a person living with chronic pain.

I happened to have one of those unpleasant times myself not so long ago.

Let me back up a moment and describe the experience in the context of a pain scale.

You may have been asked what your pain is on a scale from 1 to 10 where 1 is barely noticeable and 10 is the worst pain you have ever experienced.

You have to ask yourself: What does it mean giving a number to your level of pain? I know the result of a lower number means we don’t adjust my medications and conversely a higher number means we consider other options. But, that isn’t really my question. I’m not asking what the outcome of the number is, but rather, how do you arrive at it?

For myself, if I’m bouncing through my week feeling rested, looking forward to my next visit with my family, I’m likely to say a 3 no matter if my fingers are unable to grasp my cup of coffee.  On the other hand, if I’m sleep-deprived, dealing with the loss of a friend, or putting up with yet another cold, I’m more likely to say a 6, even if I can grasp my cup of coffee.

I’ll give you a little more insight into my pain rating system.

When I found myself being asked for my pain level at the hospital recently I gave a firm 8. My poor husband almost fell over in shock. In hindsight  I should have prepared him for it. It’s not like he didn’t know I was in excruciating pain. It’s just … well … I don’t like to share the fact that I feel that kind of pain. I know … a little odd maybe, but I prefer to suffer in private … if not in silence.

The other thing is I don’t often give a high number. Really, it’s not that I’m attempting to be stoic or brave. You see, I believe that when you’re at an 8 you can still speak. After that, it’s a fast decline to a 10 which is when you can’t speak, so when I say the pain is at an 8, I’m telling you a lot: I’m on the edge of pain so bad it takes your breath away.

You don’t think.

You don’t hear.

You don’t speak.

Because you can’t.

There is, quite simply, no other way to describe it. Everything else around you fades and all you are left with is experiencing that moment. That painful moment.

So maybe there are times it is expedient to give a number to our pain. I realize we have to do something in order for the nurse who triages in emergency to know where to put us. Maybe we should also explain our internal rating system. I’d be willing to bet there are wide variations.  One thing I’m certain of: Anyone living with chronic pain dreads those moments when the pain is severe enough to take your breath away.

At that moment it doesn’t matter what number you want to give it.

So that brings me back to where I started all this. Whether you’re living with chronic pain or not, I’m certain many of us have experienced pain so intense we lose our breath. What keeps me going through the time leading up to those moments (because I live with the certainty there will be more of them) is the knowledge that I have moments in my life where my breath is taken away by something precious and equally unlooked for.

It’s not like I’m trying to only be positive or look at the bright side of things. I’m not even trying to make lemonade out of my life. I just figure if my pain, my health, my life is being relegated to a number on a pain scale, I might as well make something meaningful out of such a number.

I look at my life as keeping score … of all the intense moments of my life … it keeps me sane.

Okay … it helps …

 

How Do You Know It’s Time to See the Doctor? (When You Feel Like Shit All the Time)

Are you a shopper?

Some people love to shop. Others do everything to avoid it. I have to admit, I can go either way. Don’t get me wrong: I can browse just about any kind of store with the best of them. It doesn’t hurt if there are books, video games, or kids’ clothes either.

It’s just some people seem to take forever to find what they are looking for so it makes me wonder: do they really know what they are looking for in the first place? Despite my own browsing behavior, one thing I know for certain: when I go looking for something I know immediately what I want when I see it.

So certain am I in my ability to know myself that I was thrown off guard recently. I felt like something wasn’t quite right, but I couldn’t put my finger on what it was … until a good friend asked me how I would know when I usually feel pretty “yucky”. The question gave me pause. I admitted I wasn’t quite sure, but I felt like I would know the difference.

It makes you wonder: When do you know it’s time to see a doctor?

There are the obvious ones: profuse bleeding, broken bone, high fever … I’m sure you have your own list.

However, if you have RA you often have a number of issues at any given time: fatigue that doesn’t seem to go away, low-grade fever, nausea, pains and cramping in various parts of your body … and the list goes on.

If any one of these gets significantly worse … or … if any of these continue for some period of time it’s probably a good idea to mention it to your doctor. Problem is, what’s the doctor going to do with “vague” symptoms?

Case in point: I went to see my doctor over a month ago with excruciating migraines, sore throat, loss of voice, difficulty swallowing, upset stomach, low-grade fever, aches, chills, and various body pains. We thought it might be strep throat, so sent a sample for analysis.

Turns out I had nothing. Or, at least that particular test was negative.

But all those symptoms persisted.

I waited another week before my symptoms had grown to such an extent, I had to go to the hospital. I was told I had a bladder and kidney infection.

For anyone, these are painful and unpleasant, but often easily treated.

I’m not just anyone.

In my case, I went through several rounds of antibiotics and over a month before I could even walk without pain.

Which brings me back to my original assertion which was I would know when there was something wrong with me … turns out I was right but even knowing that didn’t do me any good whatsoever because the healthcare system still had to figure out what it was in order to treat it. And, it’s not easy when your symptoms are rather vague or could be so many things.

Is it something new? Is it related to my RA?

However, I put it to you that in the case of someone that has a chronic disease when so much more is at stake … and I’m not just talking more pain … you’d think we could run a few more tests, be a little more thorough, or … perish the thought … proactive or aggressive with regards to getting to the bottom of these symptoms.

As for me, I’m chalking this one up to a lesson learned.

Push for answers.

Don’t just wait and see.

Be your own advocate.

When You Have a Chronic Illness, So Do Your Loved Ones

My husband texts me every morning. It’s a simple thing. It’s kind of romantic, kind of corny. I’ve teased him about it, all the while grinning because I like it.

Until I found out the other reason he does it.

There are nights I don’t sleep. There are mornings I am sleeping so deeply, he can barely tell I’m breathing, let alone wake me up. And then there are the mornings after I take my methotrexate.

I’m one of those patients that endure unpleasant side effects the day after my medication. In particular, I am physically ill and weakened for a day or two while my body adjusts.

I do this every week, every month, every year.

It’s unpleasant enough that sometimes I’m too exhausted from the night before to be able to wake up the next morning when my husband leaves for work. In my defense, he does leave early … however it never occurred to me the impact on my husband because I thought he just missed getting a goodbye morning kiss.

He texts me, that morning after, to make sure I’m still alive.

I will be honest: I broke down and cried when he told me that. I always knew my chronic illness affected him because he cares about me and doesn’t like to see me in pain. And, sometimes, it’s damn inconvenient not being able to do all the things we want to do. It just never occurred to me that day in, day out, he lived with my disease that way.

If you’re like me, we sometimes forget that our loved ones are also impacted by our chronic disease. And, sometimes, we just don’t realize how deeply.

They stand by as we cry from the physical and mental pain of inflammation, fatigue, and injury.

They stand by as we battle infection, complications, and depression.

They stand by as we manage the healthcare system.

All the while, they balance doing things for us with allowing us the dignity of doing for ourselves. These are the people that stand up for us when we cannot, that hold us when we need holding, that quietly manage their own needs after ours.

Anyone that doesn’t demand that care-givers need a voice simply hasn’t been there.

Special for the Wrong Reasons

Last time I was in emergency at the hospital I was told I was special. I smiled despite how wretched I felt and thanked the doctor. First he looked at me like I didn’t understand and then he explained I was special, but for all the wrong reasons.

That’s when I grinned … and explained.

My chronic disease has been called many things by many people: complicated, inconvenient, deadly, but never special. I understood in that moment the doctor was concerned about treating my symptoms appropriately given the nature of my illness, the physical state I found myself in, and the medications I take to manage my health.

I got what he meant … and it made me feel safe … that’s why I smiled.

He wasn’t being glib, sarcastic, patronizing, or dismissive. He was telling me he wanted to get this right. For once, it wasn’t just me that felt pressured to get the treatment right.

You know, that isn’t a fair statement. There are other times when I feel the person taking care of me is in it with me. It was just something about this doctor that stood out and that’s what’s been in my head for a couple weeks now. I can’t be the only one that wants and needs to feel and know their healthcare team is in it with them. Not just that they care: it’s part of who they are … a calling.

Perhaps it was the way he took his time asking me questions; answering mine. Perhaps it was the way he looked me in the eye and never cut me off. Or, perhaps it was the way he gave me a hand getting up from the table after the examination, making certain I found my footing before he continued speaking.

Patience. Understanding. Validation.

There was such intense relief feeling like I was going to get to the bottom of what was wrong with me … that I wasn’t alone … that the pain would not be for nothing. When he told me they were going to give me something for the pain I tried to tell him it was much more manageable now that I felt I was being listened to, but he shook his head. I’m not one to take pain-killers I assured him. Again, he shook his head.

He knew better than I that it would be some time before the infections would be cured and that the pain simply wasn’t necessary. He couldn’t make it all better, but he could give me some relief so I could continue to be strong … to give me some dignity in my pain.

I felt like crying and this time it wasn’t because of the pain.

I felt like he saw me … that’s how I know he cared.

Knowing he cared allowed me to close my eyes and relax.

Much of what that doctor did was no different than any other encounter I’ve had and yet it sticks in my mind. He took no more time than any of the other doctors that saw me that visit or any other. I guess the time he took seemed like mine … not just the time until he saw someone else.

Like I said … he saw me …

I couldn’t ask for better care, but I would like to know why that isn’t the care patients receive every visit.