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.

 

Chronic Disease / Life Balance: Acceptance and Never Back Down

It’s always something.

My latest blood results show my ESR still very high, albeit it has declined a few points from last month. Small consolation, but at least I know without having to wait until my next appointment. And, at least my liver function is back to normal. I have to say this one does concern me from time to time.

However, I have more evidence of iron deficiencies as yet another measure indicates a lower low than the month before. The trend has been holding steady low throughout the course of my disease.

You’d think this talk about my health is what my life is all about, and in some ways that’s just the way it is when you’re living with a chronic condition.

My question today is: How do you manage something that permeates every facet of your life without it taking over? You know, achieve some life balance?

Some people wonder why I bother knowing these numbers and terms when my physicians went to school to learn them and that’s why I get called in to their office from time to time.

Some people caution me – and other patients – that these numbers need to be properly interpreted by an expert.

Some people want me – and other patients – to be as involved, committed, and knowledgeable as I can possibly be.

Is it any wonder I like these last people best?

But, I digress …

To achieve any sense of life balance, I think you have to accept three things:

1. Accept this is not someone else’s responsibility. It’s yours. So, no matter who you have to consult, do it. No matter what you have to read and learn, do it. No matter what you have to figure out, do it. All to the best of your ability.

2. Accept that the degree to which you are able to manage your responsibility will fluctuate, much like the status of your condition. That’s just the way it is. That means some days you’ll make progress and other days you’ll fall further behind than you’ve ever been. That sucks. Big time. Again, just the way it is, so pick yourself up, dust yourself off, and throw yourself back into the thick of it.

3. Accept the support of those around you. I’m talking about the healthcare professionals that may not always get it right, but I have to believe really care about our well-being. I’m talking about the family and friends that may not always get it right, but I have to believe really care too.

I’m also talking about the voice inside of you that’s telling you what you need to do for yourself right now.

Sometimes, it’s get off the couch and go for a walk.

Sometimes, it’s get off your feet and have a nap.

Sometimes, it’s play with your kids or grandkids because that’s what kids are for.

To answer my original question: There is no way to prevent your chronic disease from permeating all aspects of your life. By virtue of being with you forever, the disease will, from time to time, be part of all aspects of your life.

So, ask a different question: What can I do when I feel overwhelmed because my chronic disease has permeated all aspects of my life?

Now that’s a question I can answer ….

I accept the responsibility for the job of managing my disease.

I accept the support from all the people helping me manage my disease.

I accept that at the end of the day, only I can say what direction I will take with managing my disease.

Does that sound a little daunting?

Sounds  empowering to me.

 

Writing prompt: Never underestimate the lives of old men sitting on park benches

Three elderly men sat on a park bench.

“Looks like a storm brewing.”

“Nothing to do with me.” The man in the middle asserted quickly.

“Didn’t say it did.” The first man returned slowly.

“You say that now, but we both know you don’t mean it.” He growled deeply. “Whenever there’s trouble you automatically think of me.”

“It’s just conversation! Besides, it’s not you that’s the real trouble-maker of our home.”

The heretofore silent man smiled, amused, as he patted the dog at his feet. His eyes were closed as he enjoyed the breeze passing through the nearby trees.

“And what are you smiling at?”

He sighed, opening his eyes out of habit. “Enjoying the day, brother.”

“Leave him be.” The man on the other end of the bench sighed. “You know he doesn’t get out often.”

“Do any of us?” The man in the middle grumbled. “I remember when we could have had a time of it on a day such as this one.” This was said wistfully and the other men nodded in agreement. Now, they just enjoyed the quiet.

A warning rang out, “Look out there!”

With lightning reflexes, the middle man caught something as it flew towards them. The contact made a resounding smack, but he barely noticed. Opening his large hand, he realized how wrinkled and faded it had become after all this time. He stared in fascination at the round object in his palm.

“It’s gold.” He whispered.

“It’s not.”

“It is. Look again!” He asserted, shoving it in the other man’s face. His hand shook, but whether from age or something else, who could say.

“It’s merely a ball.” The third brother’s calm voice interrupted.

“What did you think…?” The first brother began, then stopped as he looked again. He paled. “It really does look like an apple…”

“Can I have my ball back?” A youth stood in front of the men, shifting uneasily from one foot to another.

“Give the boy back his ball.” The third brother prodded the man next to him.

Eyes narrowing, the man with the ball looked critically at the youth before him. “Doesn’t look like a scamp…” He began, clearly unconvinced.

“Nothing like … your spawn…” The first brother’s eyes were wide as he leaned closer to have a better look.

“Is … there something wrong with him?” The youth asked uncertainly.

“My younger brother is reminded of an outing long ago. There was … another … yellow object…” The third brother paused. “It did not end well.”

The youth frowned, looking from one old man to the other.

“We’re frightening the boy.” The third brother sighed, shaking off the memory. “Here… catch lad!” Quick as silver  the man snatched the golden ball and threw it into the air.

Catching the ball, the youth looked again at all three old men before joining his friends that had walked over to see what was happening.

“Everything okay?” One of the boys asked.

“Yeah.” The youth shrugged.  “Just some old guys talking like they’ve never seen a ball before.” He scoffed.

The dog growled, shifting uneasily.

“Easy, Cerebus.” The man patted the dog. “They mean no harm. We should be getting back before we’re missed.” He heard his brothers grumble as they got to their feet and began walking behind him. They walked in silence for a time.

“You think they found out we were gone?” The first brother asked quietly.

The youngest brother shrugged. “What do you make of it, Hades?”

Hades heard the concern in Zeus’ voice, though he tried to hide it. He knew without seeing it, the worry in Poseidon’s walk. “It was merely some boys playing. But … you know all too well what comes of not inviting her.”

All three men shivered. If only people realized even the gods didn’t like to cross Discord.

Note: If you don’t already know it, check out “Golden Apple of Discord”

I Write

In fact, I’ve spent my career and life writing. There is nothing I will not write: proposals, grant applications, elevator pitches, press releases, slogans, collateral, advertisements, advertorials, customer service guidelines, technical columns, user handbooks, bed-time stories, poems, songs, and even fanfiction.

Now I write a blog.

There’s something about language … selecting the precise word to convey a specific action or emotion; describing a feeling so completely that a reader is unaware of any other; drawing that reader into a character’s mind and world so they want nothing more than to know what’s next…

There is nothing quite so heady as realizing that’s what’s on your desk for you to accomplish that morning. Every morning…

It is also humbling.

Never mind that some days it is the most daunting, overwhelming, disorganized ordeal attempting to write anything at all … some days it’s nothing you’d let anyone read.

But, this blog is about all parts of my life. My family has been quite clear: They want to read what I’m writing. So, here is an assortment of ramblings from various writing prompts and excerpts from various projects all for your entertainment.

Don’t say I didn’t warn you…

 

Innovation 101

I attended Ottawa’s first Hacking Health Hackathon a couple weeks ago. The place was humming with energy and it reminded me of my internet start-up days. The projects and teams were diverse, excited, and committed to their ideas.

It made me wish I had more time and energy to get involved because I learned a long time ago you want things to change, you have to get involved. Besides, as a patient, it’s my responsibility to ensure my perspective is part of all this innovation. And, I take that seriously.

However, something happened to me as I walked around speaking with the teams. I became less excited about the “innovation” which in many cases wasn’t anything new. There are many wait time tools, self-care monitoring tools, and the like already available. As a patient I was disheartened that there was so little participation from patients (the ultimate beneficiaries), including no patient representation among the judges.

And then it occurred to me: Yet again, people presume to know what is best for me.

I continued to smile and speak with people as I walked through the next room, but I couldn’t help but begin to look at the people and projects differently. I began to feel more uncomfortable about being there as a patient.

I took away two things from this event.

First, the greatest projects aren’t the ones that try (and fail) to solve the big stuff. The best aren’t trying to catch your attention and they sure aren’t innovative. Projects like the free flap monitoring floored me. Why? Simple, really. These teams took on something they could accomplish in a relatively short period of time. These projects have immediate impact on the quality of a patient’s life. You don’t need to convince the patient the benefit of this project, unlike so many of the apps.

These guys get patients.

There are projects that are not sexy. They are even boring. But, they are doing what needs to be done. Many cases, these should have been done a long time ago.

It isn’t all about innovation: Finding the new, the exciting, the panacea … it is about doing all the simple things that make the overall life of the patient better.

My second take-away is a two-parter. I should not be surprised that there is inequity in patient involvement because that has been the status quo for generations. Instead of leaving me dis-spirited, this inspired me. But, because there was little patient involvement, it got me to re-think what innovation really means.

Innovation is about change, revolution, upheaval, transformation, metamorphosis, and breakthrough.

Innovation doesn’t have to be a thing; it can be a new way of thinking.

Innovation isn’t the end; it is a means to an end.

Innovation can take tried-and-true from other industries because these ideas can be revolutionary or innovative simply by virtue of never having been done that way before in healthcare.

When you look at it that way, who wouldn’t want to be part of it?

However … you cannot bring innovation to healthcare … you cannot transform healthcare … without actively involving patients throughout the process. I’m not saying you won’t get it right without patients. I am saying whatever you do can be better with patients … if for no other reason than you get all stakeholders in the same room.

So, you want innovation? Be careful what you ask for. I’m a patient and I intend to change your opinions, revolt against your way of thinking, cause upheaval in the status quo, and transform the way we get things done.

I can’t wait to see what happens next…

The Thing About Hurdles

I used to love track and field as a youth. I loved to watch and I loved to participate. I loved the challenge of hurdles and long distance runs best.

I never could say what happened. All I know is the person next to me slipped, falling against me, causing me in mid leap to hit the hurdle right across the knees.

It wasn’t my first bad fall and it wouldn’t be the last. It was, however, the last time I ran hurdles. Although, now that I think about it… I’ve been dealing with hurdles of one kind or another all my life. So, maybe it’s not so much that we have hurdles we have to deal with, but rather how they come at us?

Fast forward to this point in my life… I often read that in order to be engaged, patients need to have more knowledge. I’m a patient and I’m telling you lack of knowledge may not be the greatest obstacle to engagement: It’s the constant barrage of hurdles.

In my quest for knowledge, I read a study in the American Journal of Managed Care (April 19, 2017) which found that 98% of patients want to receive their results online. Can’t say I’m surprised. Top reasons why: it saves time and we get more complete information. This is what I’ve been talking about for some time now!

Many patients do not mind receiving abnormal test results. While healthcare professionals continue to be concerned that without the face-to-face interaction and personal encouragement of such a visit (to receive lab results), patients are more likely to fail to plan their next treatment steps, it is clear patients want the information in their own hands. It’s called empowerment.

Which brings us to today’s particular hurdle: Extra charges for lab test results.

I received an invoice in the mail this week for a test that is no longer covered by OHIP. It’s for AST, a “relatively non-specific marker of liver disease and therefore has limited utility in the community setting”. So, maybe there’s good reason to exclude it unless the requesting physician is a hepatologist (as indicated on the invoice)?

I just want to know how else am I going to know that my liver function is still okay considering the nasty drugs I have to take for my RA? That piece of information was not included on the invoice.

So, in addition to this valid concern, this is the first I’ve heard of it and, according to the invoice, the decision was made in 2013, although it didn’t come into effect until April 2017.

I want to know where have I been for the last 4 years when I’m sure patients were being told about these changes?

I have a standing order from October 2016 and there was no mention of this change (and charge) from the physician nor from the lab that handled my requisition.

I’m one of those people who read everything, and I do mean everything, when I’m in a waiting room. Again, nothing in any of the physicians’ waiting rooms nor in the lab where I had my lab work done for the last 4 years.

Disappointed. Annoyed. Not surprised.

Some days it doesn’t matter how hard you try to keep yourself informed, educated, and knowledgeable, you still get stuck with a nasty surprise. It’s not that I don’t like a challenge, and I’m in this for the long haul (guess I still like that long-distance race). It’s just some of these hurdles seem so unnecessary. So easily avoided.

You want the best for patients? Don’t worry about abnormal test results. I have a support network for that. Don’t worry about unclear test results. I have google for that. Changes to what is covered and what is not? Now that I could have used a heads-up on.

Oh. That’s right… Guess someone did tell me… when I got the bill.