Life Happens

When I haven’t posted anything for a few weeks, there’s always a reason. It’s not likely I lost interest. It’s not likely I have nothing to say. It is most likely some facet of my health has consumed all focus, all energy, all everything just like a black hole.

Sometimes, rather than being a positive force, having such focus is like being lost …

I lose track of time. I lose track of what’s going on around me. I lose track of everything, everyone … even me.

I’ve been encouraged in the past to share my perspective of this journey of being a chronic disease patient with all its ups and downs as it happens. I have resisted quietly … and not so quietly … from doing so and the reason is maybe not what you’d expect.

It’s certainly not that there aren’t things to share … there’s the dreadful experiences, awkward situations, unbelievable indignities, heartwarming kindness, inspirational grace, and so much more.

It’s certainly not that there aren’t people that want to hear about it … there are many people writing about their experiences as they happen.

And, it’s certainly not that there aren’t people that need to hear about it.

I guess I’m just not certain what I think about some of the experiences as they happen to me. I guess I want a little time to get some perspective. And, I guess I want to keep a little of some of it just for me.

That said: Imagine being transferred to a cold and unbelievably hard table in the operating room, furtively trying to grasp the edges of your flimsy and oh-so inadequate hospital gown. There are several sets of hands on you … people that you likely have only just met and hope like hell know what they’re doing. You’re not sure exactly what they want you to do because several are talking at the same time. It’s like you get tunnel hearing as well as tunnel vision.

Everything is overwhelming and it doesn’t help that you’re shivering when they tell you to stay still.

Could be it’s very cold in the room.

Could be you’ve just emerged from a warm cocoon intended to raise your internal body temperature.

Could be you’re scared as hell because you know you’ve signed up for this and it’s way too late to back out even if you wanted to …

Now, imagine you’re leaning over the edge of that cold, hard table, facing someone you’ve only just met, who is holding you firmly because they are supposed to prevent you from falling off the table. Why would that be a concern? Well, the person behind you, whom you’ve also just met, is giving you a spinal. To make it better, to get access to said spine, the hospital gown is thrown to the sides, giving anyone behind you a great view of said behind. And there goes any semblance of modesty.

There is no dignity.

There is only what needs to get done.

Here’s the thing: I’m not just the patient that shares my perspective and experiences. I’m also the patient that has these experiences … the enduring and the processing of what it means to me.

Was it a positive experience? Was it a negative experience? Was it a necessary evil? Was it possible to improve on the experience? If so, how? I would love to be able to answer these questions, I really would.

And, while I appreciate the opportunity to provide feedback on my experiences by the hospital that treated me, I would prefer the time to process what happened, how I feel about it for good or bad.

With time, I heal. With time, I can think again because I’m not in such pain, nor am I muddled because of pain-killers. With time, I pull all the fragments of conversations, situations, and people that surrounded me and a picture of what happened, how I feel about it, and what I want done about it emerges.

I want a conversation … and that can’t happen without giving me time … time to be me and not the patient that has only just emerged from the operating room.

I will share my experiences, my thoughts, my feedback … the only question is will you listen and what will you do with what I share?

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Chronic Disease: How to do the Holidays

There’s something about this time of year …

It’s the crispness of the air, the smell of pine needles, the cheery multi-coloured lights. Of course, there’s another way of looking at it: the cold and bitter snow, the slippery and invisible ice, the rushing and irritated people everywhere.

No doubt about it, for every person that happily dances in the snow, you’re going to find a person that complains and curses the wet stuff. And, it’s the same with every other aspect during this holiday time.

Is it because some people enjoy the hustle and bustle while others do not?

Is it because some people enjoy seeing people, exchanging well wishes and gifts while others do not?

Is it because some people enjoy being in this moment, while others because of their circumstances can not?

I won’t answer for everyone, but I can tell you it isn’t easy finding enjoyment in a moment that holds worry, fatigue, and pain. That doesn’t mean a person with a chronic disease can’t enjoy themselves; it just takes a little more … and less … everything.

I can enjoy socializing … if I don’t do all the hosting.

I can enjoy exchanging well wishes and gifts … if I don’t do all the shopping and wrapping.

I can enjoy all the moments of the holiday … if I catch up on sleep and remember to eat regularly.

(Okay, that last one isn’t usually a problem when there’s food in front of me.)

Much of the advice a physician gives to a person with a chronic disease is equally good for the healthy privileged. There are, however, a couple things to keep in mind.

First, know your limits. Everyone has a limit to what they can do physically, mentally, emotionally. My limits may be less, may be more, but they’re likely not the same as anyone else’s … that’s why they’re mine. For me, when I start to feel weak, start to shake, change colour … that’s when I have to stop, sit down, maybe have a nap.

Second, set your boundaries. Simply put, you have to make it clear to everyone around you what you are prepared to do and what happens if you are pushed. For me, I’ve set an activity each day with down-time to prepare and recover. Anything more and I will say no. The trick is to mean it when you say it.

Third, don’t forget the fun. We try to make everyone happy, be “fair” and see everyone that asks, try to make everyone feel special … but if that just sounds like work, then you’re doing something wrong. For me, I know the people I want to see, arrange a date, activity for each, and then let the fun happen. I have to remember this is not just fun for others, but fun for me … if it isn’t then why do it?

There is always the possibility I’ll be in too much pain, too tired, too sick.

There is always the possibility I’ll get pressure to do more than I can or want.

There is always the possibility of disappointment, frustration, and sadness.

I don’t have all the answers; I just know that if I make the plans like anyone else would do for the holidays, but with my energy levels, my wants, needs, and preferences in mind, then I’m much more likely to have the holiday I hope for.

Now if I can only follow my own advice ….

I am the One Issue per Visit

I really don’t like waiting in my doctor’s office.

Don’t get me wrong, I hate waiting, but it’s the stuff on the walls that really bothers me. Having never considered myself overly squeamish, I admit to having trouble looking at what passes for wall-coverings.

There’s the full colour, larger than life, bacterial and fungal skin infection poster.

There’s the full colour, larger than life, ear, nose, throat, and lung infection poster.

There’s the full colour, larger than life, what else can be wrong with me poster …

Since I’m rarely at the doctor without waiting on some scary test result or the like, I’m feeling really on edge, until I spot a blessedly plain white paper. Heartened, my eyes focus on its message.

“Limit One Issue Per Visit”

Now, the words “one issue” are in bold and underlined and the “one” is even highlighted in faded yellow.

Those other posters aren’t looking so bad now, are they?

So, I have to wonder, is that a demand, request, or conversation starter?

Sure, I’ve asked my doctor about it before. I’ve never had a satisfactory answer … probably because she doesn’t have one to offer.

I can empathize, I really can. There’s only so much time and you don’t get paid if you can’t bill for the time taken. It’s an impossible quandary: spend the time with the patient as you’ve committed to do OR get paid for the work that you deserve to be compensated for.

Here’s the thing: I do what I can to bring a single issue to each visit, even if that means booking more time or a second appointment on another day. Consider what that means: I’m a chronic disease patient and getting out to that appointment isn’t easy on the best of days. I don’t have simple issues. I don’t have a single issue. I routinely have more than a single test result or condition to discuss. And, considering it can take a couple weeks to get a single appointment, god only knows what new weird and unpleasant things have entered into my health orbit.

So, there I sat waiting for what was going to be really bad or only bad in the “we still don’t know what’s wrong with you but have ruled out some really bad things” sense; all the while studiously ignoring the infection posters because that’s really what I don’t need to be thinking about at that time. And, I wondered, should I feel guilty that not only do I have to discuss this test result and next steps, but what appears to be a new infection at my previously healed PICC site?

The stark black and white paper notice demanded a response. I wasn’t sure what it should be. My doctor isn’t getting the wool pulled over her eyes. She knows I’m a complex walking set of issues.

Whatever is wrong with me at that moment is tied to everything else about me. We can’t discuss a new medication without considering what happened the last time I tried something new. We can’t discuss ruling out one possibility without considering what the last test showed. We can’t treat one infection without considering all the other infections I have going at the same time.

I want to respect my doctor’s time.

I want to do my part to ensure my doctor is compensated fairly.

I want my doctor to treat the whole me, each and every time.

Too often, as patients, we push for one more question to be answered, one more concern to be allayed, one more possibility to be considered … and we feel guilty.

Too often, as patients, we are concerned how we sound when we ask for what we need,  how we look if we still don’t understand and ask for further clarification, how we seem when we just can’t stop crying … and we feel guilty.

Too often, as patients, we return home with less than what we want, need, and deserve … and we feel guilty.

There has to be a balance and here’s mine: One issue? Fine, I’m the issue. I, the patient, am the one issue. I will respect the time limit. I will read anything and everything you ask me to. I will come prepared with questions, paper to record our exchange, and an advocate when and as needed.

Here’s what I want in return: Patience. Forthrightness. Respect.

Be patient with my questions, my concerns, my tears …

Be forthright about what you know and don’t know, can and can’t do …

Be respectful of what it takes of me to come to you vulnerable, scared, and in pain.

One issue?

No problem.

I am the one issue.

Me, the patient … we’ll figure out the rest together.

Chronic Disease: Planning for Uncertainty

Every year around this time my husband and I get away for a long weekend.

Don’t get me wrong, we certainly go for the romance, the downtime, the quiet. It’s also the time of year we reflect on where we are and where we want to be. Having acquired more than a century between us, we figure we may as well put some of that hard-earned wisdom to good use.

Sure, we look over our finances, our budget, our housing needs, our professional lives, but we also consider our family life, social life, personal interests, and health and well-being. The way we look at it, if we don’t talk about it … if we don’t work at it … we can’t whine about not getting it.

In discussing what each person wants we discover things about each other, and even ourselves, that we may not have realized. We find where we meet on values, which is fundamental to a strong union. We can make realistic plans for what we can achieve as well as grieve and put away those things that are not going to happen.

Sometimes people ask me how I can make such plans in the presence of having a chronic disease; particularly when I am waiting on a surgery or a nail-biting test result.

My response is the same each time: How can I not?

I can’t focus on what I cannot, do not know.

I can’t focus on what I do not, cannot have.

I can’t focus on what I am not, nor ever will be.

It’s true: I don’t know what will happen with each surgery, each test result, or each new complication. It’s true: I don’t have the physical, mental, or emotional energy that I used to have and never will again. It’s true: I am not ever going to get “better” because I have a chronic disease and that’s not going to change.

But for me, it’s not about what I can’t do … it’s all about what I can.

I’m not in denial: I am quite cognizant of all that I can’t do. It’s just there is still so much that I can, so it feels wrong not to focus on that as well.

I’m not trying to put a postitive spin on things: I am realistic about what I can and can’t do. And, I am well aware that what I can do today isn’t going to be true for me tomorrow or next year.

I’m not ignoring what is: I am looking at the entire life that is mine, not just what seems to get in the way. When we focus on a single aspect of our lives – good or bad – we lose out in what the other parts can tell us. No, I’m not saying I’m happy to have a chronic disease; but I have made peace with it and that makes all the difference.

It’s a tenuous balance.

On the one hand you’ve got all the wonder life can offer and on the other you’ve got all the horror. But the way I look at it that means I’ve got two hands … two options … two pools from which to draw from …

So, I am taking all the plans, ideas, and possibilities from my planning weekend and I’m putting them into motion. Do I think they will all come to fruition? Please, my parents didn’t raise a foolish child.

Here’s the thing: There is no certainty that anyone – regardless of health status – will get all the things they want, that they work for, or that they plan for, so why shouldn’t I keep going?

I know, I know … I’ve got a few extra strikes against me.

I’ve got a few less tools in my kit bag.

I’ve maybe even got a little less runway than those with healthy privilege.

There will be days, maybe weeks, where little gets done. There will be setbacks, challenges, and unknowns to deal with. There will be ups, downs, and those irritating side-ways steps. Tell me something I don’t know.

Here’s something else I know: I’m willing to work hard. I’m even willing to work smart. I still look into the next year with an exciting plan that takes into account all the things I want, need, and, yes, deserve.

Why shouldn’t I?

 

 

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.

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.