While We Wait

It started with my hands.

There wasn’t a moment of the day or night without pain. My life was reduced to transitioning from angry, hostile monster to sobbing, incoherent mess.

It was clearly no way to live and I was 42 years old.

In my case, the very last thing my physician tried was a test to see if I had rheumatoid arthritis. That is, after months of negative and inconclusive testing and, always, that uncertainty and pain. When I was finally referred to a rheumatologist I remember the intense relief: finally … I had some answer as to what was wrong with me.

That was before I realized it would be another 29 weeks – or more than 200 days – before I would see the rheumatologist and another couple weeks waiting on the additional blood test to confirm the diagnosis.

I waited because what else was I to do?

It would be another three weeks after formal diagnosis by my rheumatologist before the inflammation, and therefore the pain, would be reduced enough that I could think straight again.

I’m one of the lucky ones – wait time to see a rheumatologist is now at over 2 years.

So maybe you can understand why all the hullabaloo about wait times always makes me smile. It’s not a happy one by any means. On the contrary, it is my acknowledgment and understanding as to how brutal waiting is on every facet of our lives, because, believe me, I get it.

From the person anxiously watching the clock wondering if their parking will run out before they are seen to the person wondering if their co-workers and boss will understand that they are late; from the person juggling three active children in an overfilled waiting room to the person wondering if they will have time to make dinner when they get home before soccer, ballet and piano lessons; from the person wondering if this test will finally determine what is wrong with them to the person wondering if they are going to catch anything from the clearly sick people around them.

These are all legitimate factors when we have to wait. But, from my perspective, dealing with long wait times is only part of the solution. What happens while we are waiting is just as important.

Case in point: One of the waiting rooms I was in recently had a screen that not only posted a patient’s first name and the number of minutes until they would be seen, but was updated so if there was a change, a patient would be informed immediately.

What a simple solution to the “how much longer?” situation that not only addresses patients’ queries and concerns, but it has to affect the bottom line in terms of reducing the time of staff answering this question!

Let’s be honest, we all check before we resign ourselves to participating in the line that goes on for who knows how long. It’s one of the reasons why Appletree’s online app showing available doctors, locations, and wait times is so successful.

It’s also one of the reasons why booking online for our appointments makes sense: we don’t have to wait for staff to be available to take our call. Conversely, that same staff member’s time is reserved for some other task.

So where am I going with all this talk about waiting? I’ll sum it up with three points.

First, we need a discussion about necessary versus unnecessary waiting; between what we can and will accept versus what is bordering on immoral or inhuman.

Second, it makes sense that all stakeholders be involved in figuring out how to deal with waiting. This includes objective and critical evaluation as to the success of any program or process put into place.

Which brings me to my third point: I think I speak for many people when I say I don’t mind waiting for something if at the end it is worth the wait. Taking a look at my journey of being diagnosed I have to say I have mixed feelings. Knowing what was wrong with me gave me intense relief, especially when I had to work hard at getting taken seriously all those months. However, I don’t believe I was ever really heard.

If I had to give a single piece of advice based on my experience it would be this: listen. I mean, really, listen to the patient and don’t assume you heard unless the patient tells you that you got it right. I didn’t care what was wrong with me so much as I wanted and needed the pain to stop. Not only would the wait have been far less of an ordeal had I been heard, I likely would have been able to hear what was being said to me. I don’t believe I was being obstinate … I simply couldn’t hear past the pain.

Here’s the thing: fixing wait times is a good thing and we should do it, but it’s too big for one person to solve … but hearing what a patient needs at that very moment is doable. In doing so, we change the conversation to be about the waiting experience instead of wait times.

It would have made the wait worthwhile to me.

Playing with the D-Rings of Life

So maybe it was the thrill of being in a foreign place that a sense of adventure commandeered my better judgement. It could have been because my husband really wanted to go and this was a couples’ vacation. More likely, I was exhausted from life, hence the need for this vacation away, and he got me when I was vulnerable.

Regardless, I found myself strapped into a harness, watching the waves crashing against our tiny boat. I realized there was a lot of water around us. I started to get second thoughts. As if our local guides sensed my concern, they began to let the line out and I bounced on the bottom of the boat. It distracted me, and moments later, the lines on our sails were let out and that boat got further and further away.

There is no other way to describe it: we were being flown like a kite.

I’m not crazy about heights so I decided it was best not to look down. I didn’t like the way the clouds were gathering (yes, there was a storm approaching), so I decided to look into the distance. Again, land was a long way off, but it didn’t look so scary. And then it happened … my husband told me to stop playing with the d-rings.

I had no clue what he was talking about until he calmly explained.

Annoyed, I told him I had to do something to keep myself from being anxious up there. I mean, what was the big deal? He’s an avid fiddler with anything and he was telling me not to do so?

He assured me that if I wanted to go down in a hurry I should just keep doing what I was doing. Alright, what he really said was the only thing keeping me attached to the sail was the d-rings. That I was fiddling with.

Now, I’m not one to panic, but I sure did that day. Thankfully, it took the form of freezing in place. He had to pry my fingers from the d-rings.

That was almost 20 years ago and I have never been flown like a kite since…

But, it did get me to think about how there are times in our lives when we find our situation precarious, much like my kite-flying adventure was to me. It also made me think of what I learnt from such an experience … besides never doing that again.

First of all, we should live life to the fullest. That means be watching for opportunities and when one presents itself, we should recognize it as such and take advantage of it.

Second, accept the fact that by taking advantage of opportunities, we are sometimes going to find ourselves in a less than optimal, even downright bad, situation. Gotta take the good with the bad, right?

Third, cultivate the types of friends and colleagues that will not only notice when we’re heading for trouble, they’re invested in you enough to warn and even, when called for, take steps to prevent serious harm: especially the stuff you don’t see coming.

Life isn’t without its dangers, but when you have people willing to be flown like a kite alongside you and keep your fingers off the d-rings, well, then you’re set for whatever opportunities come your way.

Personally, I’d stay away from anything with a d-ring…

All You Need is 60 Seconds

If you have a chronic illness, you need an elevator pitch.

You know what I’m talking about: the less than 60 second sound bite that explains you with your illness and how the world should deal with that knowledge. I didn’t think it was so difficult to come up with one.

The Pitch: I have rheumatoid arthritis, an autoimmune disease, involving inflammation of my joints, including those that keep my organs functioning, as well as chronic fatigue and pain. Essentially, my immune system is attacking itself and the only way to treat it is with medication aimed to reduce my immune system; the result being increased susceptibility to infection.

Pleased with myself, I shared this with my twenty-six year old daughter. She has fantastic neutral face. I wanted genuine feedback. I got it.

I may have explained my condition, but I left out the most important aspects of the perfect elevator pitch: what it means for others … in other words, why they should care and how they should relate to me.

Not to be dissuaded, I tried again. And, again. We were at it all afternoon. Turns out there’s a reason this isn’t as easy as it looks: it’s about seeing it from the other person’s perspective and we can all relate to how difficult that can be at times!

So here’s what I did: I got the clinical explanation out of the way as quickly as possible. It’s true, almost everyone has heard of arthritis. For the sake of a 60 second explanation, it really doesn’t matter that rheumatoid arthritis is like no other arthritis. I have to save that educational moment for another time.

Instead, I focused on what a person would see and what they would not see about my illness. Then, I worked out scripts people can use to interact with me.

For instance, I get tired easily, but at the same time I don’t want to miss anything (or let anyone down). If there is an understanding that I will do everything I can to avoid cancelling a get-together, appointment, deadline, or other scheduled event, and that I don’t want people to stop counting on me or start making allowances for me, then we have a starting point.

My daughter encouraged me to remember that there is limited mobility and strength which translates into asking for help opening water bottles on a regular basis. What is important is that I would prefer to ask for the help, as opposed to people pushing the assistance on me. If I promise to ask when I need it, we have a script we can all respect.

So, armed with these (and many more) examples, I tried my pitch again.

Pitch Take 2: I have rheumatoid arthritis. It’s an autoimmune disease affecting joints, including organs, and involves chronic fatigue, pain, and inflammation. I may have to ask for assistance opening a bottle, but I’m not afraid to do so. I may have to ask for your understanding if I cannot meet a deadline, but I’m not afraid to do so. I may have to ask for alone time when I’m overwhelmed with pain or lack of sleep, but I’m not afraid to do so. I’m more susceptible to infections because of the medication used to treat my disease, so do as you would with anyone else: don’t cough on me and please wash your hands regularly.

I want to live to the full extent that I am able to do so and that includes letting me try and fail things. What I want from you is not to do everything for me, nor to feel sorry for me. If I need help, I’ll ask, and if you can give it, all’s great.

If you have a question, definitely ask. When a person asks a question it’s a win-win: you get the information (hopefully) you’re looking for and the other person gets to give it to you. Such a simple exchange can mean more for developing understanding and fostering trust and respect than any one thing can do.

Just under 50 seconds.

It’s a work in progress, but I’m more convinced than ever that creating an elevator pitch and accompanying scripts for my chronic disease is an exercise that will pay off and then some.

Lies We Tell

We used to tell our children that an act of omission is as bad as an act of commission. That is, leaving out salient details is still not telling the truth, especially when we’re asking the questions…

I find myself committing acts of omission every day.

I had to cut short a get-together with a friend not too long ago, explaining that I hadn’t slept well the night before. It was absolutely true: I had slept fitfully and maybe 2 hours. What I left out was the reason: I’d had a flare-up of my rheumatoid arthritis.

Now, that doesn’t sound so bad what I left out does it? Let me tell you why I think it matters.

There are days, weeks even, when I am able to do less than usual, certainly far less than I would like, either directly or indirectly because of my chronic disease. It’s difficult enough to admit this to myself, let alone someone else. Add in that I may inconvenience or let someone down and I think you’re getting a glimpse of what I’m getting at here.

On the surface, people can be extremely gracious (we are Canadians, after all), and accommodating, given the reason of insufficient sleep for less than par performance or participation. I don’t need people to be polite. I want them to tell me when I’ve put them in a difficult position and then brain-storm together how to handle it.

Consider if I had a broken leg and that’s why I had trouble sleeping. I share this with people and they immediately get where I’m coming from. In fact, we’re likely to exchange stories of people we know that have been in similar situations. If I slip, I’m clumsy and we share a laugh. If I attempt an ambitious snowboard stunt and almost make it, I may get an approving nod and again we share a laugh.

However, I explain that I couldn’t sleep because I was in pain and … instant silence.

People aren’t sure what to say. Maybe we say “sorry” (we are Canadians), suggest ways in which I could “deal with” the pain … and the list of polite, yet distant, responses continues. I don’t want people to feel awkward about asking me or talking to me about my health. I want them to ask me straight out if I feel it’s under control, or being managed, just as they would ask who the surgeon was that set my broken leg.

I don’t know if it’s because one is a physical and temporary condition and the other is a physical / mental and chronic condition, or what, but it does make you stop and think, which brings us back to what else is going on in our heads.

For me, I’m wondering if the person I’m speaking with will think I’m unreliable, weak, fabricating or embellishing my condition, or worse, wonder why I didn’t just tough it out. I want a world in which it is not mutually exclusive that I have a chronic disease and am reliable.

There’s a reason people are reluctant to discuss a chronic condition: we don’t know how to manage the conversation. We have no script.

I can hear the argument: You don’t have to tell people everything. It’s absolutely true. I don’t have to tell them that I am less reliable due to a health condition because I don’t know when there will be a flare-up. I can do what I’ve done for years and manage my health as best as I can and give acceptable reasons for when I am unavailable. But is that really the best we can do?

I want people to see me as capable of managing my health and my life as anyone with a physical and temporary injury: because I am. And, if someone calls me out on something that they believe I’m not managing, I’ll just call them a true friend. I don’t want people to “fix” me, but just like the person with a broken leg, I want to be able to ask for a little help now and then.

Either way, what we leave out of a conversation can be more important than what we include and that’s something we should talk about.

My Blood, My Results: So What?

No one said this was going to be easy and most days that’s just fine with me. I’m not looking for easy; I’m looking for doable.

Being diagnosed with a chronic disease changes your life in many ways. You bounce between relief that you know what’s wrong with you and horror that you know what’s wrong with you. Not to mention you are inundated with information: about what you should do, what you should not do, when you should do it, when you should not do it, how you should do it, how you should not do it, and the new order of things goes on.

After a time, if you’re fortunate, you stabilize and that’s when it hits you that you’re the passive participant in your own life. You wait for the specialist to tell you the type and amount of medication to manage inflammation, fatigue and pain. You wait for the technician to tell you when they will draw blood. You wait for the receptionist to tell you when your next appointment will be. And, you wait for someone else to tell you the results, consequences, and next steps of every test you take.

If you look at lab results as a sort of report card on how your disease is being managed, you get a sense of how impatient a person can feel waiting to hear about those results. And, if you don’t hear about the results unless there is something terribly wrong, well, I don’t know about you, but I like to know before I fail that something is going in that direction. That’s why I’m getting my lab results online from now on.

You could ask: But what if you can’t do anything about the results? Good question.

I mentioned in my last post about watching erythrocyte sedimentation rate (ESR) as it indicates inflammation level and is one piece of information that my rheumatologist uses to decide if my medication increases or changes. For someone with RA, it isn’t unusual to have a slightly higher than normal ESR. Anyone living with inflammation can tell you if their disease is active just by being conscious.

Seeing an increasing trend in ESR is useful to me for two reasons: the pain is real and I need to address it, and it gets me prepared for a conversation with my rheumatologist.

When I say the pain is real I mean just that, which could seem ludicrous to some people, but there it is. The problem is that when you’re living with chronic pain, all too often you don’t know when it’s too much until you find yourself crying in the corner. I see my ESR increasing over a couple months and I will take the discretionary anti-inflammatory medication more readily as opposed to toughing it out.

Every time you have a conversation with your physician, you need to be your own staunchest advocate. By this I mean, you simply cannot agree to take more of a medication because you are told to, nor can you agree to taking a biologic without doing adequate due diligence. Remember, this is your life, not someone else’s. By all means, listen to all the good advice of these experts, but don’t ever forget: you are the driver.

All this brings me back to getting access to my lab test results … and it isn’t nearly enough, but it’s something that helps me manage and that has to be good enough reason to do it.

There’s a joke I like to tell that illustrates the difference between involvement and commitment. It’s about the roles that the chicken and pig play in making bacon and eggs for breakfast. The chicken is involved, but the pig is committed. I may be the pig, but no one is going to call me chicken.

You damn right it’s not easy, but this is my life, and I’m committed to living it with all the information that is mine.

My Blood, My Results: Am I Right?

I am one of those people that has blood work done at least once a month. I have to say it doesn’t bother me (I watch) and we usually don’t have trouble getting a vein. Regardless of whether it’s easier for me or not, I still dread going. Maybe it’s my aversion to rigid authority … the appointments are set with a 1-2 day window prior to the actual appointment date or the entire month is skipped. It could be that at least once a month I have a cold. Or, it could be that I just hate waiting for my test results.

When a good friend brought it to my attention that I didn’t have to wait for my lab test results, I was stunned. Now, this may not be news to some people, I realize; and, others may not care much about it, but I have to tell you I was both intrigued and peeved at the same time. I was intrigued about the possibilities this information has for me and yet peeved because I want to know why I haven’t heard about this before?

Again, this could just be my expectation that simply because the test was ordered for my health, using my blood, that I would have a right to see the results in their entirety, when they are ready. My interest in getting the information quickly overcame such resistance.

To date, feedback on my test results is only given in one of two ways: when I go in for my semi-annual appointment or if there is a problem. To me, that is an unacceptable number of test results that I don’t hear about; and not just because I feel it is my right to have access to my results.

Erythrocyte sedimentation rate (ESR) is a screening marker for inflammation associated with rheumatoid arthritis because it measures the interaction of red blood cells with inflammatory proteins. The higher the number, the more active my disease, and the more active my disease, the more likely I will have to increase the amount of medication I take. You can see why that would be important to me.

Of course, my rheumatologist will call me if and when we need to take action so does getting access to this information really change anything? That’s a really good question.

At the end of the day, it’s my information, my health. I pay the consequences and carry the mantle of responsibility for managing my disease with the resources that I can access. It is all about a sense of control over something I have so little control over. I don’t control when the appointments are, I don’t control how often I get to see my specialist, I don’t get to control my inflammation, fatigue or pain. If I get access to a little more information so I know what’s up ahead of me, then why wouldn’t I do so?

I don’t want to wait until my rheumatologist calls me to tell me “we” have a problem. To me, just waiting in the darkness as a passive participant is no longer an option. Getting access to my test results has everything to do with actively taking control and responsibility for my life.

What am I doing for myself this month? I’m checking out Dynacare Plus to get access to my lab results because it’s my blood, my results and I have a right to access it when I want to.

So, when you ask if it matters that I can access my entire blood test result when I want, I respond: Damn right it matters.

Break Your New Year’s Resolution Yet?

It’s not just that New Year’s resolutions are so easy to break; it’s that they’re so easy to make. Do more <good habit> or do less <bad habit>, am I right?

We all start out hopeful and full of energy, or is it just the sugar-high from Christmas? Regardless, if you’re like me, we really do start out with the best of intentions. And, if you’re also like me, it doesn’t last long. The disappointment, frustration, and disgust, however, do …

Which brings me to what I do this time of year: pick my annual theme. It works best if it is a single word or phrase. A theme works because it gives focus to connect actions and intentions all year long. Choices become clearer; as do consequences, but without the same guilt of breaking a resolution.

If at all possible, make your theme a verb. It gives you momentum. My theme for 2017 is “flex”. I’m not talking muscles, exactly. Although, now that I think about it … it could.

I want to push my boundaries, my capacities, and my degree of tolerance (and acceptance) for change. Sounds like a lot, but when I wrap all I want for myself into “flex”, suddenly it becomes clearer what I should do each day.

It also means that when my husband has some cool technology that I “really have to try” I don’t throw something at him. Instead, I’ll ask him why and be genuinely curious.

Who knows? I may actually like trying new things? I mean, I doubt it, but I’m ready for 2017 with a theme that promises to be an adventure.

Credit and thanks to Lisa Martin (personal coach) for the notion of a New Year’s theme.