Sick Upon Sick

It sucks to be acutely ill on top of having a chronic illness.

But it is also in some ways liberating in that, you are, in some ways, in the same position as someone who isn’t chronically ill.  You get a cold or a cough or a sore throat (or all of the above) and you go to the doctor.  You can easily point out what’s wrong.  And usually doctors can usually pretty quickly figure out what’s going on. 

It can be very complicated, and yet, it can be so uncomplicated. 

Diagnosing the cold, flu, sinus infection, strep throat, and many other acute conditions, is so much easier than diagnosing illnesses like lupus and rheumatoid arthritis.

You leave the doctor with a plan, usually a rather simple one, and you feel better in a few days.

None of this try this awful treatment and it may or may not work.  Or it might pose a risk to your future children, but that’s just pennies in the grand scheme of things.

I am sick of being complicated. 

Sick of being sick.

Sick upon sick of being sick.

I wish every doctor’s appointment was in and out just like that.  But those are the exceptions rather than the rule. 

And obviously, being chronically ill and acutely ill could mean that you are in danger of getting really sick from something that would only be a blip on the radar of a healthy person. 

And in reality, what would take a “normal”, healthy person two days to get over, took me over a week.

A cold is just a cold, but you have to be super-vigilant to make sure that it doesn’t morph into something worse.

It’s annoying when your system just can’t seem to shake something off.  It lingers.  It’s like enough already. 

You just want it to be gone, but then, even when you’ve been restored to your previous state of health, you aren’t healthy.  It’s great that you can be “cured” of acute ailments, but many ailments remain.  So unlike “normal”, healthy people, you continue to go to the doctor even once you are “well”, or at least, not acutely ill. 

 
And I do worry that when I go to student health for things like this, that they don’t understand how important it is to consider the whole picture.  It might work for healthy people to look at each acute health issue as being in isolation of everything else.  But for those of us who are chronically ill, it’s important that our usual health issues are considered when treating something acute.

A “Bitter Pill”: Weighing In On Our Broken Healthcare System

An article in Time Magazine (titled “Bitter Pill”) recently chronicled the high costs of medication and other hospital services.

For those of us who are chronically ill, we know all too well that the financial costs of healthcare are extremely high, and can add a lot of stress to an already over-taxing situation.  So too are the emotional costs. 

It’s stressful when things don’t go the way you planned.  And I don’t just mean medications working the way they’re supposed to, test results, etc., I mean something as basic as procuring a prescription.  And it’s not just that these experiences are annoying.  They are unnecessary. 

Here’s an example:

When I started a new medication a few months ago, I was told that the prescription had been submitted to the hospital pharmacy where my rheumatologist’s office is.  I went to the pharmacy, and of course, they had no record of the prescription. 

I went up to my rheum’s office and talked to a receptionist.  I was informed that the prescription had been accidentally submitted to the student health center pharmacy, and that my doctor would have to redo the whole thing.

You would have thought I was a drug addict “jonesing for a fix”.  I’m not.  The problem was that there are very specific instructions for lab work that has to occur at certain times and at regular intervals.  To make it easier on myself, I had decided to do the blood work on Tuesdays, as I am already at the hospital to volunteer.  If I wouldn’t have been able to get the medication, I would have had to change my whole plan.

I called the student health center and they confirmed three things I pretty much already knew:

   1)      They could not fill this prescription because they do not stock the medication.

   2)     My insurance would only cover the prescription at a specialty pharmacy, which the student health center is not.

   3)     Because my doctor does not practice at the student health center, they could not have filled the prescription anyway, regardless of numbers 1 and 2 just mentioned.

So why did the system even allow it to get submitted there in the first place?

Ultimately, despite what I had been told, the student health center was able to call the hospital pharmacy and transfer the prescription over.  And I was able to get it that day.  But what started out as a 15-minute errand, turned into a nearly two-hour ordeal.

This directly speaks to the use of technology in the healthcare realm.  For the first time, patients are able to interact with their medical records and health information in truly amazing ways.  However, this technology has its pros and cons.  I talked about this at length in my post, “The Trials And Tribulations Of Electronic Medical Records And E-Prescribing* **”. 

As I suggested in that post, E-Prescribing doesn’t seem to work very well.  If you cannot get all of your prescriptions at one pharmacy, this is not something the system can deal with.  Similarly, the system defaults in ways that can cause the wrong pharmacy to be chosen or the wrong medication, wrong dose, wrong administration, etc. 

This technology makes doctors lazy.  They type stuff in without making sure that what gets submitted is correct.  And that’s what happened in this case. Because UMHS and UHS are very similar, my rheum thought he had selected one, when he had actually selected the other.

Then these things get sent out into the ether, and you only find out if there is a problem when you go to pick up the prescription and it hasn’t been filled for whatever reason.

And then it becomes the patient’s job to slog through the system to find out what went wrong where, and what can be done to fix the problem.

And since some insurance companies require different pharmacies for certain medications, drug interactions are a real concern, especially when the patient deals with four separate pharmacies for their various medications.

If that’s not stressful, I don’t know what is.  It means that the patient – who is often sick, tired, and unable to be a real advocate – really has to be on top of everything. 

On the one hand, you would think that it’s great to be an empowered patient with the technology that is available, but the way the system works has the opposite effect, and in fact, can be very disempowering. 

When obtaining a new prescription is like running a marathon, it’s very easy to want to beg out.  It’s overwhelming.  In some ways, the big things should be stressful, but these little things should not have to happen at all. 

I can’t imagine what it’s like for those who can’t do what I did or don’t have someone to do it for them, to hunker down and wait until the situation is resolved.  Not that I enjoy spending hours going on a wild goose chase, because I absolutely don’t, but I can.  I don’t take no for an answer.

It’s not easy to be chronically ill.  It’s downright stressful.  That’s why these “small” stresses brought upon by the healthcare system are so maddening.  Is it too much to ask for something to go smoothly, just once?  Yes, apparently it is.

Sometimes too much technology is a bad thing.  While, again, I do think that there are definite benefits to patients having so much of a direct connection to their health information, I also think that the system, as it currently stands, relies too much on technology that isn’t designed to deal with the nuances that come with having a chronic illness.   

Technology is supposed to make things easier, and maybe as far as healthcare is concerned, it does in the realm where healing time is quickened, procedures are made less invasive, things like that.  But in the realm that is the doctor, the patient, insurance companies, and the receptionists and pharmacists, it makes things more complicated.

Sometimes I want to scream, “Just give me a damned piece of paper.”  That’s an old-fashioned notion, I know.  But if I, the patient, could take the prescription to the correct pharmacy on the first try, it would certainly make things less stressful.  Or if I had that paper, and three prescriptions need to go to three different pharmacies, I could take care of that – and get it right – on my own. 

I think the most stressful part about this, however, is that in some ways, my life is in the hands of these people, and they don’t get it, they could care less.  The sense of urgency that I feel doesn’t register in their world.  So I take control.  I have to be my own – and best – advocate.  And yet, no matter how I hard I try, I sometimes find myself on the losing end anyway. 

Chronic illness is stressful.  And it would be nice if just once in awhile, one of the many people in the healthcare arena got it.  That they could feel your pain, or sense your frustration, and offer to lighten the load a bit.  But that rarely happens.  Instead, I’m stuck talking to technology that doesn’t respond.  I’m fighting a system that cannot be fought.  And while I appreciate the technological advances, I have seen firsthand, time and time again, the wisdom of a paper prescription that your doctor has to write out and sign.  That you agree to the terms and leave, prescription in hand, feeling empowered, feeling like the master of your dominion. 

Instead, I feel like a lame duck, like I’m stuck in a cycle of ridiculousness.  I leave feeling acutely that I’m chronically ill, knowing that my healthy counterparts deal with the system so much less often, and probably much more smoothly on the occasions that they do.

So my pills are a constant reminder of the struggle I face.  Even though they may be hard to get my hands on, I swallow them dutifully, albeit, even though they leave a bitter taste in my mouth, the remnant of fighting for my health and my life, in a system that seems to serve everyone other than the patient.

  

Interview With Author Amy Ryan*

I recently read “Shot” by Amy Ryan.  Amy was diagnosed with Type 1 Diabetes at the age of 29. 

I’ve invited Amy here today to tell you a little bit about herself and her book. 

So, where do I begin?  I have so many questions.  So much of what you said in your book resonated with me.  And because chronic illness narratives tend to be similar despite having different illnesses, I really enjoy reading books by patients who have diseases other than my own.

First off, can you tell my readers a little bit about yourself?

AR: I am 46 years old, and was diagnosed with Type 1 Diabetes when I was 29.  Since then, I’ve gotten married, had a daughter, helped to raise two stepsons, gone to law school, and now written a book.  I live in Alexandria, VA, and practice law in Washington, D.C.

Wow!  So in other words, you haven’t let Type 1 Diabetes stop you from living your life.  What made you decide to write a book about your experiences with Type 1 Diabetes?

AR: This might sound unusual, but I wanted to write a book about T1D that people who don’t have the disease might read.  I feel like T1D is a very misunderstood condition, and that few people outside the families of those who have it, really understand how taxing it is on a daily basis.  I think most of the books about T1D are directed to people who have the disease – books about how to manage it, how to plan meals, etc. I wanted to write a readable account of daily life with T1D that people who have diabetes can relate to, but I wanted to do it in a way that would be an interesting read for people who don’t have diabetes as well.  My goal with the book is that it will raise awareness about our condition outside the realm of those who suffer with this disease.

For you, it all started off with a yeast infection, which seems harmless enough.  Then as you got deeper into the medical realm, you began to realize that you had been having symptoms for a while. What was that like for you?

AR: It was perplexing, really. I didn’t understand how this could have been developing within me, how this had happened to me, without me really being aware of it. It left me questioning many things – how could I ever trust my instincts, or know if I was healthy, if I had missed all of these warning signs?  And this may sound cliché, but it made me realize how much I had taken my good health for granted. Good health is such a gift, and I think I did not fully appreciate it when I had it.

You talk about insulin shots and glucose levels, ketoacidosis and many other Diabetes-related concepts.  It’s overwhelming.  What was the learning curve like for you?  Were you able to master the art of self-injection?  I know that’s something that I, and other chronically ill people, not just those with Diabetes, have struggled with.

AR: The learning curve was steep, and at times overwhelming.  Just when I would think I had a handle on things, something new would come up and I would feel like I was behind the eight-ball again.  For a long time, I felt like I could never get ahead of this disease. I still feel that way sometimes now. I did master the art of self-injection, because I had too.  All of us with T1D have to master it, because there is no other treatment for Type 1.  In the beginning, I really didn’t think I could make myself do it, but eventually it becomes second nature, as much a fact of life as brushing your teeth. 

Your syringe collection sounds a lot like my prescription bottle collection.  I’ve kept every empty prescription bottle since I got sick.  We’re talking over five years now.  It’s quite a nuisance, actually, because it takes up a lot of room in my tiny apartment, but there’s something about them.  It’s as if they are the thing that makes me being sick real, as like you, most of the time, I don’t look sick. 

AR: It’s interesting that you say that, because you are right – you don’t look sick if you have T1D.  It’s not a disease you can see.  Sometimes when I tell people that I have diabetes, they say, “You do? You don’t look like you have diabetes.” That always gives me a chuckle – how am I supposed to look?  For me, the piles of syringes that used to accumulate before I started on an insulin pump were a stark physical representation of the toll that this disease takes over time.  You might not be able to see this disease, but it’s there constantly, piling on with stress and worry year after year – just like all those used syringes in my shopping bag.

You talk a lot about the realization of what it means to have a chronic illness – the fact that it never goes away.  Can you say more about that?

AR: That, for me, is the most daunting part of this disease. It was such a hard thing to adjust to, so difficult to really understand what always means. In the early days after my diagnosis, I think in the back of my mind I thought I would be able to stop my treatment at some point. If ever I had been sick before then, I might take antibiotics for 10 days, or have some other course of treatment, but it would always stop and I would be well again. With a chronic illness, it never stops. Not for a day.  That was a gradual, painful, and depressing realization for me.

I have Lupus and Rheumatoid Arthritis.  My readers have other illnesses, as well, so it might be helpful to give a bit of information about Type 1 Diabetes.

AR: I sympathize with you, as I have RA as well, which was diagnosed about 10 years after the diabetes.  Like Lupus and RA, Type 1 Diabetes is an autoimmune disease.  I think this is one of the facts about T1D that many people don’t understand – it’s not a lifestyle disease, it’s not caused by diet or lack of exercise, and it’s not a disease of childhood either.  In Type 1 Diabetes, the immune system attacks and destroys the beta cells in the pancreas that produce insulin, which everyone needs to stay alive.  This is why people who have T1D must have injections of insulin in order to survive. 

 
One of the most heart-wrenching parts of the book is where you talk about “Dead-in- bed” syndrome.   Can you explain more about that to my readers?

AR: This is a rare yet terrifying syndrome in which a person who has Type 1 Diabetes, typically a teenager, dies during the night, while sleeping. The presumed cause is hypoglycemia (low blood sugar).  It occurs in people who have no history of complications from diabetes, and who otherwise are in good control of the disease.  For a parent of a child with diabetes, this is their worst nightmare, and it’s something they have to be concerned about every single night. The parents of children who have T1D never get a rest, never a night off from the worry. 

What’s an insulin pump, and how has it impacted your life as a patient with Type 1 Diabetes?

AR: An insulin pump is a medical device that’s worn on the body and releases a constant dose of insulin through a cannula (a thin tube) that is inserted and remains under the skin.  Except in rare circumstances (such as if there are problems with the pump or blood sugar is unusually high), people who use insulin pumps no longer have to give themselves shots of insulin because the tube under the skin emits a steady dose.  Wearing an insulin pump has helped me because I no longer have to keep up with hundreds of syringes and related supplies every month, and because it enables me to adjust insulin dosages discreetly, which I was not comfortable doing in front of other people when I took insulin by injection.

After you were diagnosed, you ended up getting married and having a baby.  How did you manage that and Type 1 Diabetes?  It certainly gives other chronically ill women hope that they can have a family and manage a chronic illness. 

AR: I was extremely fortunate when I was pregnant to have dedicated doctors – both my obgyn and my perinatologist (high risk specialist) – who always made time for me and who gave me the support, both medical and emotional, that I needed to get through my pregnancy.  I was very motivated to take care of my diabetes because I was not just taking care of myself, but also the new life I was carrying.  It also helped that the pregnancy was for a finite period of time – I found it a bit less daunting to think I only have to manage this so intensely for 30 more weeks, then 20 more weeks, etc., as opposed to looking at it for the rest of my life.  The finite chunk of time seemed more manageable.

There is a lot of misinformation out there about Diabetes, or at least people think they know a lot about it when they actually don’t.  How has it been to deal with other peoples’ preconceived notions about what it “means” (or who fits the profile) to be a person with Diabetes?

AR: Honestly, very often I would not even tell people that I have T1D, because I would not feel like fielding the follow-up questions.  People will say, “Can’t you go on a diet or something?  Don’t you exercise?” Or sometimes, they will tell me about someone they know who lost a foot to diabetes, or lost their vision. Besides that, it’s a very complicated disease to explain, it’s not as simple as saying that I take my insulin every day and move on.  It’s actually one of the reasons that I wrote the book – the next time someone asks what it’s like to have Type 1 Diabetes, I want to be able say, “Here, read this book. This is what it’s like.” From my own perspective, it takes a book to explain this disease. 

At the beginning of the book, it isn’t immediately apparent that your diagnosis took place in 1996.  How have things in the Diabetes world changed since then?

AR: Things have changed so much, all for the better.  There are faster acting forms of insulin that were not available in 1996.  There are finer-tipped syringes, and syringe pens that make injections easier. There are more advanced insulin pumps, and continuous glucose monitors.  There’s also much more of a community, and it’s easier to find information than it was in 1996 (pre-Internet).  There are so many terrific blogs for people with T1D, and they provide such a sense of community and comfort. I feel far less alone with this disease than I did 17 years ago. 

What have you learned from your experiences?

AR: I have learned that everyone struggles with something.  Everyone faces challenges and has to deal with things that they wish they didn’t have to. Many of these things, like T1D, are things that no one else can see, but they’re there nevertheless. This is what I tell my daughter and stepsons, that you can’t assume anything simply by looking at someone, you can’t assume their life is easy or they don’t have challenges to overcome. We all have so much more beneath the surface than what meets the eye, and not all of it is pretty or easy. 

I think that’s a great lesson.  What do you hope readers will get from your book?

AR: For readers who suffer with T1D, or any chronic condition, I hope they will relate to the story and feel that they have found a new friend. For those who aren’t familiar with T1D, I hope they will read the book and understand a bit more about what life with this disease is all about.

What’s next for you?

AR: For now, I’m trying to get the word out about the book, which has been a lot of fun and tremendously gratifying. I’m doing some book signings and attending some JDRF (formerly the Juvenile Diabetes Research Foundation) events.  I’m connecting with blogs like yours, and enjoying some of the early feedback I’ve gotten on the book.

Thanks so much for talking to me!

Thanks, Amy for sharing your story!  And thanks for stopping by Getting Closer to Myself today. 

*I received a free copy of this book from the publisher.  However, my choice to have Amy as a guest blogger was my choice, and had to do with my personal opinion of the book.