It’s Just One More Thing

I was out getting coffee the other day and I couldn’t get the cover on the cup.

I tried it one way. I tried it another way. I tried a different lid.

With a sigh, I asked the barista if he could give me a hand. He explained the lids were difficult and proved it by taking a couple tries before the lid was securely in place.

It’s not like I make a habit of giving up or anything. If I did, I’d never get anything done. I certainly wouldn’t have gotten my coffee …

So, maybe it was the lid. Maybe it was that my hands hurt so bad they felt numb. Maybe it was that I was so tired from not sleeping the night before. Maybe it just felt like it was one more thing … a common refrain from this chronic disease patient.

Nothing feels like one more thing quite like getting a new medication, because, guess what? There’s always side-effects and here’s what I get told:

It’s not so bad …

It’s not like it happens often …

It’s not like it happens to many people …

My emotions are wild and varied: discouraged, vulnerable, misunderstood, ignored, and even murderous.

You don’t get to say it’s not so bad …

You don’t get to say how often it happens …

You don’t get to say it’s not going to happen to me …

It always strikes me as peculiar, like it’s supposed to be comforting or reassuring, that side-effects are not so bad, uncommon, or likely to happen to you. And, when they do, well, at least they’re treating something that you want to get rid of.

Wait.

I’m not getting rid of anything, remember?

I’m a chronic disease patient. That means forever. There is management of the disease. Holding it off, if you will, from doing more damage, quicker, or something like that.

It’s also about managing symptoms and side-effects of the disease.

Here’s the thing: Sometimes the side-effects are worse than the disease. Sometimes the fact there are things you can no longer do is worse than the disease. Sometimes the medications are worse than the disease.

I know, I know. Nothing is worse than a disease that ravages your body, shortens your life-span, damages your body so that all you are left with is lack of mobility, diminished dignity, and no lack of pain.

From my perspective … I just want to not feel sick from my medications all the time;

… I just want to be able to do as much as I can all the time; and

… I just want to think about the short-term at least some of the time.

Okay, so maybe we’re getting somewhere: It’s a matter of short-term versus long-term results; or is it? I would agree that sometimes you have to put up with very unpleasant side-effects in order to have a tomorrow. But, can I get some agreement that sometimes a person cares less about a tomorrow that hasn’t happened yet and is pretty wrapped up in enjoying the here that is?

Can I get some agreement that unless you’ve experienced these side-effects in all their unrelenting glory, you don’t get to talk to me about it in anything less than a compassionate, unhurried, full-on listening mode?

I know there has to be a balance between taking the medications, treating the disease, listening to my healthcare team, and living with the discomfort and unpleasantness of the side-effects.

It’s like the barista that helped me with my coffee lid said: Sometimes the lid is the problem. Not me … the lid.

I’m not the problem … stop blaming me for not taking the medications. I really am listening when I am told I need to be serious about treating my disease.

However, hear me when I tell you that just doing what you say can’t always be the way forward.

And, we could start with the disease … the options … being the problem, not me.

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It’s Not Crazy or Insane

It’s a good thing my husband likes nuts because no two ways about it, some days I’m a whole bag of nutty.

I’m not talking about crazy schemes … because now that I think about it, I’ve been known to come up with my share.

I’m not talking about wondering if the whole world’s out to get me … because you know the expression: just because you’re paranoid doesn’t mean they’re not out to get you.

I’m not talking about throwing a fit because something’s unfair … because you know at least some of the time it’s true.

No, what I’m talking about is when everything leads to a darker place, which leads to a darker thought, which leads to an even darker action. I’m talking about melting down because there isn’t anything else a person can do. I’m talking about out of control emotional wreckage.

When this happens, damage control is critical.

Of course, you should wait until the melt-down has run its course. Otherwise, you’re less control, more damage, you know? It’s something my care-giver husband is still learning …

What causes such an outburst?

That’s a great question … unfortunately, I know the answer.

As a patient with a chronic disease there are constant, unrelenting pressures, worries, changes, challenges, road-blocks, and pain. There is the disease you have been diagnosed with, but it seldom ends with a single illness. Once you have one disease, you are more susceptible to others.

There are side-effects to the disease, but also the medication to manage your disease.

There is no curing your disease, merely management; a fact you must live with.

There is the knowledge that as you age, there will be age-related disease, changes, and challenges you must contend with.

There is the knowledge that with every surgery, there are additional risks; and more surgeries.

There is the knowledge that what may be a simple cold or flu for one person could turn into pneumonia and an extended hospital visit.

There is the knowledge that the skin rash you go to your doctor with could take longer to diagnose because of your complicated set of variables.

There is the knowledge that few people around you will understand that just a single additional itch, cough, rash, headache, unexplained bruise, ache, pain, or dryness will set off a world of anger, despair, frustration, and loneliness.

Being a patient with a chronic disease is like riding a bad roller-coaster; one you don’t get a choice of riding or sitting out on. It’s the long, slow, straight up, all the while knowing it’s going to be straight down at some point. It’s the sharp twists and turns that take your breath away.

Now, for people that like roller-coasters that doesn’t sound so bad, does it?

What if I said you weren’t strapped in?

Still like it?

So, maybe it isn’t a surprise that sometimes enough is enough and we just can’t take anymore. Sometimes, we just want a break in the bad ride. Sometimes, we just want someone to tell us we aren’t crazy when we break down. Sometimes, we just want someone to tell us we aren’t crazy to keep going.

I’m reminded of Einstein’s definition of insanity: doing the same thing over and over and expecting different results.

Sometimes, I feel like that’s all I’m doing.

And, then, I get over it.

Here’s the thing about damage control: First, you let the melt-down happen. Second, you renew, rework, recommit priorities and your to do list. Last, but not least you give your care-giver a hug; if nothing else this signifies it’s okay to forgive and move on.

Yes, I’m getting back up and pushing back at the healthcare system that says it’s okay to wait 30 days for an urgent test. Yes, I’m pushing back at my doctor for medication that doesn’t make me feel worse than what it’s supposed to treat. Yes, I’m getting up every day whether I feel like it or not.

And, yes, I’m going to have a melt-down from time to time because that’s just part of my life.

That isn’t insanity; it’s called not giving up.

Use It or Lose It, Say What?

How many times have you encountered the phrase “use it or lose it”?

I’ve used it as a mantra for years. It’s given me that last little push to go the distance. It gives encouragement and motivation to consider the long term gain versus the short term pain.

Maybe it’s recovering after an illness or injury and you want to regain mobility, strength, or endurance. Maybe it’s weight loss or toning for health, vitality, or looking good. Maybe it’s showing that you can do better or more.

Whatever it is, physical or intellectual, the idea is that if we don’t use it, we will somehow lose what we already have. Whether we want to build on what we have or just keep what we already have. It could be we are working against time, injury, or our own desire to be something else.

Pushing against inertia is tough. So, we motivate ourselves by warning that if we don’t use it, we will lose it.

Motivate?

Sure.

Warn?

Sure.

Scare, bully, or nag also fit the bill. We justify it to ourselves that whatever it takes, that’s better than losing.

The phrase “use it or lose it” takes on a whole other meaning when:

… You can’t use it no matter what you do;

… You can’t get back what’s been lost;

… People can’t understand why you’ve changed.

I live with rheumatoid arthritis. My disease works constantly, tirelessly, to remove the good from my body and at the same time put bad into places it has no place being. The result is the same: inflammation, pain, and loss of function.

I can push against the pain. Hell, it’s agony just opening a cupboard above my head some days, so I’m up for the challenge if it would do any good.

I can figure out new ways to open up my milk carton so I don’t spill it because my fingers lose strength unexpectedly. Again, I’m up for the challenge because I’m already making accommodations on the fly as a matter of course.

I can even push back at people around me that tell me I should try a little harder because if I don’t use it regularly, one day it’ll be too stiff to move. After all, I know they mean well and for the most part I take what is good from their words. I am confident that I really don’t have to do what they say at the end of the day.

Here’s the thing: I used to believe in the phrase. I used to live by the phrase. I used to get so much from the phrase. It really ticks me off I can’t use it anymore.

Because, it’s a lie. For me, it’s a lie. There is no use it or lose for me.

I will lose it.

There will be days that it is too painful to be able to use it. There will be days that I cannot use it and then there will be days I can use it. But, I will lose it. That’s just the reality of my disease.

See, it’s not just about being motivated enough. It’s not about working through the pain. It’s not about anything other than some days you can, some days you can’t, and one day you won’t be able to.

What do I make of all this? I changed my mantra, naturally.

Use It Until You Lose It.

No denying it’s going to happen. No sense crying over it either. Use it when you can, do something else when you can’t. Be grateful when you can and kind to yourself when you can’t. To the extent your disease allows, you determine when you can and when you can’t by assessing your strength, ability, pain, needs, and wants.

It’s about you; not anyone else … and definitely not anyone else’s idea of what you should or shouldn’t do.

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.

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 …