Lens

I had a revelation recently. Shocking, I know. Sometimes we get so wrapped up in our own stuff that we forget all the things going on around us. We see everything through the smudged lens of our personal experience.

For me, it came with a hospitalization a few weeks ago. I returned to work and when asked how I spent the holiday weekend, I replied “in the hospital.” Responses varied from “oh my gosh!” to “what are you doing at work?” The whole time I was thinking “so what?”

You need to understand that I spend a lot of time both at doctor’s appointments and in the hospital. This week, I had 5 appointments. I average 2-3 every week. It’s my life now. I don’t even give it a second thought. When I was asked what I was doing on my day off, I replied “going to 4 doctor’s appointments.” The conversation stopped.

I now realize that my normal is not even close to “normal.” For most people, my life sounds like a major health crisis. It is. However, I don’t live like it is any different from “normal” because this is my normal. My lens doesn’t magnify my health because I choose to focus on other aspects of my life. Does this mean I’m not ill? Nope. Just that I’ve accepted where I’m at and kept moving forward.

Your challenge: Think about how you look at things. Is that drama really as dramatic to everyone else? I’m reminded of people in my past who reacted to events like the apocalypse had happened. I think about people in my life now who are wringing their hands over flat tires while I’m learning that I may have a ninth “rare disorder” that may very well change my entire life from the ground up. Keep things in perspective. Keep your lens aperture open wide.

Cynic

Sometimes, it’s not easy to see the glass that’s half full. I have my good days and my not so good days. Some days I seem to be the eternal optimist. Others I’m just rolling with it. Still others I’m about as negative as they come. I like to think we humans are all like this. So, most days I walk around with a half full glass.

Recently, that’s not been working for me. A number of things have happened in the last few weeks that make me feel like the glass is half empty. Or even three-quarters empty. There’s been some friendship stuff. There’s been some family stuff. There’s been a whole lot of medical stuff. There have been set backs on so many fronts. None are insurmountable. Compared to many, many other people my problems fall under “first world problems” as my daughter calls them.

So, I’m cynical right now. Faced with yet another health issue, I’m worrying about how things will turn out. Will the doctors listen to me? Will they understand just how stressful this is for me? Will they do what I ask them to do and not get so wrapped up in how things *should* be? These doctors don’t know me and it’s my first experience at this hospital. My Autism is telling me I must have everything planned. I have to know what’s going to happen. I have to know the outcome. But, that’s just not possible. My body tells me that my mind is just along for the ride.

I have people telling me to trust that everything will be fine. I’ve been down this road enough to know that “fine” is a very broad state of being. I have to trust people I will have met maybe once for something that has gone wrong more often than right. Stop thinking like that I’m told. Stop worrying. It will all be fine.

I wish. I really, really do. I wish I could believe that everything will be fine. I wish I could go into this expecting a great outcome. But I can’t. Fear, hope, helplessness, frustration. And, because of past experience, a whole lot of cynicism.

The one bright spot in this current mess is my primary care provider. She’s been working with me since February, when the local military healthcare providers decided to fire me as a patient. She inherited what is now known as a “hot mess.” In 8 months, we’ve come to understand each other. So when I messaged her that I needed help, she called me almost immediately. Her response was to ask what I needed, talk through the options and then handle the need. I must say, I found it encouraging. Maybe, just maybe, things will be okay.

Response to “Letter to Patients with Chronic Illness”

There is a blog post that is making the rounds again. It’s actually a great post..one that I find myself nodding in agreement with as I scroll though it. But, there are flaws when the sentiments are applied to my medical care, which I am guessing is much like many other’s experiences. You see, the blogger has opted to go into private practice, as in no insurance accepted. He makes his decisions without codes and policies hanging over his head. I respect that, but it just isn’t a reality for most people. So, here we have an excellent post that when shown to a “regular” doctor, we get laughed at.

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

Ok. I get that. But having been beaten down by so many doctors I’d say I’m a bit jaded. I see others who do come into an office with that automatic “respect” mentioned here. Those people are becoming fewer as Dr. Google tears down the mystique of “doctoring.” I say that doctors should just over themselves and their God complexes and get back to the job of doctoring.

Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.

Respect is earned. Everyone should receive a certain level of respect because that is part of being civil. But, if you want more than that, try earning it. I respect that you went to school and decided to take on this job. I respect that you have more knowledge about certain things than I do. I respect that you have chosen to be a doctor. I want you to respect that I too know many things you do not. I too went to college and while I chose a different vocation, it doesn’t make me “less” than you. I want you to respect that I came to you for help, not to get into a contest of “who knows more.” If you want me to listen to you, try listening to me first before offering more of the same platitudes I’ve heard from others before you.

Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.

Ah, a beautiful sentiment. Please, yell this from the rooftops to anyone that will listen. Doctors change practices, move out-of-state, quit the job, You leave us just when we start to think you have a clue.

Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

I wholeheartedly agree with the idea of only going to the ER when absolutely necessary. I wish the insurance companies made this possible. Right now, some practices are so booked that the only option a patient has for being seen in the next two weeks is to go to the ER.

But, here’s another side. When I go to the ER, something is so wrong with me that I can’t manage it at home. Trust me when I tell you that I have tried everything I can to avoid an ER visit. By the time I throw in the towel, my body is so far gone that only emergency treatment is going to make a difference. Now, treat me as an emergency. Stop trying to blame everything on my chronic illness and treat what you see. Give me fluids to fix the dehydration. Give me pain medication like you do other patients who are in pain. Stop questioning my “motives” and do what you proclaim to do…solve the emergent problem.

Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.

I avoid doctors. My “experience” has shown me that even if I show up with something “routine” like an infection, my doctor’s will find some way to make me feel like I’m wasting their time because it’s part of being chronically ill. If I don’t come in with a big, complicated problem, I get brushed off so the doctor can move on to the next patient. What you see as allowing things to build up, I see as me coping with the small stuff you wouldn’t have dealt with anyway.

Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.

Another nice sentiment. Driven by the insurance companies we rely on to help pay for the very expensive care required to keep us going, we don’t have that many choices. We are assigned primary care managers that we can only change once a year without penalty. How many years of “suck” are we going to have before we find one less “sucky?”

Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

A reminder for doctors…this is a two-way street. Forgive us for being, in your eyes, too pushy. We’re probably at the end of our ropes trying to cope with not only the demands of our illnesses but also with the lives we want to have. We don’t want to be constantly reminded that we are our own best hope because everyone else has better things to do than work with us.

Chronically ill means life is inherently different and most likely harder than for someone who is relatively healthy. As doctors are generally “healthy,” it stands to reason that while they can empathize with a chronically ill patient, they really do not understand how hard we fight every. single. day. We are plagued by stereotypes placed upon our heads by doctors. Our insurance companies know us by name because we are constantly battling to find the less sucky part of the road. And just when we think we have found “the one” who will listen and learn and try to help us, we discover….

That the reality is doctors have “solvable” problems that allow them to feel successful rather than helping people obtain the best quality of life possible when living with chronic illness.

Here’s the link to the original letter:

 

http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

 

Options

Attitude is a little thing that makes a big difference.~ Winston Churchill

I had another doctor’s appointment today. Another specialist who is referring me to yet another specialist. Some days it seems like an endless road of cobblestones with the all too frequent speed bumps. I know I’m not alone on this journey. Many of my social media contacts seem to have similar paths. I read their updates and laugh/cry with them. I’ve met many of them in person now and am constantly amazed at how much people cope with on a daily basis.

Today my new specialist asked me how I could be so clinical and calm when describing my health. I must have looked weary as well since she asked me how many times I had repeated my history. Truth be known, I’ve lost count. I’ve been ill since 2000 and “chronically” ill since 2010. My life changed. I can’t do some things anymore. I’ve discovered new pursuits to replace the ones I’ve had to cross off. My coping mechanisms are wide in scope since I have so many things to deal with. Yes, I am clinical. It’s actually one of my ways of dealing with the speed bumps.

What I find interesting is how different people look at their circumstances. I have one friend whose battle cry is “Quality over Quantity!” This friend is determined to live a full life, however long it is. I read their updates and find myself hoping it’s a long one. The sheer will to keep getting up day after day, never knowing how beat down you’ll be at the end of the day, is a testament to the strength of the human spirit.

And I know other people who see what I envision as small challenges melt into a hot mess. Their response to a stubbed toe is worthy of an Oscar for Best Acting. Yes, I find myself chuckling and restraining myself from posting something sarcastic. I keep telling myself that I haven’t walked in their shoes and shouldn’t judge. But, really. I have a hard time sympathizing with you over a cold that lasts THREE WHOLE DAYS when I have weeks where I struggle to stay out of the hospital.

Then there are my “in between” friends. They triumph over challenges and quietly mention their latest success. They write about things that bug them and a few days later post about how it’s amazing the way things work out.  I read about their kids and family members and cheer them on. Again, seeing the human spirit in action is an amazing thing.

So what am I talking about in this blog post? Attitude. There’s a whole lot of “not fun” in this world. there’s also a lot of great opportunities. People who get hung up on the “not fun” parts absorb that attitude and, in a way, make their own lives “not fun.” I used to be one of those people. There was a time when I would have stayed in bed all day because of a cold. I’d bemoan my stuffed up nose and feather-filled head. Even in the early years of being ill, I’d do an “oh poor me” schtick for anyone who would listen.

Now, I see things differently. I weigh whether the level of “not fun” is worth doing an activity. I speak up and tell people what activities I can do without experiencing too much “not fun” as a consequence. Ever so slowly, my friends are picking up on my cues. More people are becoming less fearful about including me in activities. I like to think it’s because I’ve put them at ease. That maybe they have learned that while I’m ill, I’m still a person who needs companionship. I can still do many things. Sometimes it’s mind over body if I really want to do something.

It comes down to attitude. We have to make peace with our past, cherish our todays and celebrate our tomorrows. That’s what I told the specialist today. The look on her face was one of astonishment. And we proceeded to map our the next plan of action to deal with the latest issue. I encourage you to continue moving forward, head held high, facing the challenges with grace and dignity. It’s your call.

Atlas Shrugged

If you’ve ever read any of Ayn Rand’s writing, you know the focus is on a dystopian future filled with philosophical implications. I originally read her works over 30 years ago as a teenager. Then, they seemed to be a rallying cry for my rebellious self to shirk tradition and become a “forward thinker.” Now, her writings seem more predictive in that many of the situations presented in her books seem to have come true.

Atlas is a Titan from Greek mythology who crossed the Gods and must now hold the sky up for eternity. Many people believe Atlas was charged with holding up the Earth. Either way, the implication is that a sole being is responsible for maintaining the balance. That is a mighty burden.

Until recently, I felt I had found a kindred spirit in Atlas. I had crossed the powers that be and my punishment was to forever battle the weight of the world. For 4 years now, I’ve been fighting to find out what was making me so ill. My doctors fought me literally every step of the way. I would research a possibility and then be told that there was no way that could be my problem. As this process repeated itself, I became very depressed. I felt like I was the only one who was interested in discovering what was happening to me.

Last year, I was able to convince one of my doctors to send me to The Mayo Clinic. He did it reluctantly and told me that the only reason he was writing the referral was to convince me that my illness was psychsomatic. When all was said and done, I received two diagnoses. Neither one could be “faked” or deemed psychosomatic. From November until January, my doctors continued to deny I was physically ill. They refused to provide treatment for these illnesses, claiming that I was making up my symptoms. At the end of January, a decision was made by the medical group to fire me as a patient. They claimed I used too many resources and filed too many complaints about my care.

I’m sure the medical group felt they were punishing me by forcing me out of their system. In the last 6 weeks, I’ve discovered that the medical group actually did me a favor. And today, I shrugged.

I now have providers who see me as a person and are at least professionally concerned about my well being. Today, I had a provider caution me about corporate policies and what I needed to do to ensure that my medical needs were being met without crossing corporate decision makers. I have been reassured that I have physiological issues that are severe, but manageable. I was told, very compassionately, that this is my life now. No more tests, no more medication trials, no more feeling like a guinea pig. We’ll follow new developments and talk about if they are worth trying for me. I was given permission to live again.

This. Is. My. Life. I don’t consider that a death sentence. It’s a challenge. Live fully. Love unconditionally. Enjoy every sunrise and sunset. Stop worrying about my medical journey. “We’ve” got your back. And with that conversation, I realized that I was going to be okay. No promises of smooth travels, but it will be okay. And I can live with that.

“Home” by Phillip Phillips

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave (wave) is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
You get lost, you can always be found

Just know you’re not alone
Cause I’m gonna make this place your home….

Orphan Zebra

In the United States, the only place you’ll see a live zebra is in a zoo. I’m sure there are exceptions, but we don’t have roaming herds of zebras in the streets. Which means you have to go out of your daily routine to see one. Which, by definition, makes seeing one an unusual occurence.

In the medical field, physicians are taught that when they hear hoofbeats, think horses not zebras. Meaning that most illnesses are common enough that physicians see them all the time, like horses in the United States. Every once in a while, a person shows up with something that isn’t a horse. These diseases are referred to as “zebras” because while uncommon, they have been identified. Zebra illnesses are absolutely no fun. Most don’t have enough research dollars attached to them to make studies viable. So, people with zebras tend to stumble along, treating symptoms as they appear and hoping for the best.

Then there are people like me. I’m coining the term “orphan zebra” here. Not only are some of my illnesses zebras, they are so rare that there are fewer that 300 confirmed cases worldwide. We’re orphans in the medical field because doctors only read about these illnesses. Our illnesses are often mistaken for horses because the doctor has never even read about the illness. And as far as treatment goes, unless some fabulously rich individual happens to take pity on us, we muddle through because no one wants to research something that isn’t funded.

I think the worst part about being an orphan zebra is that no one believes these illnesses exist. There is very little research and you have to dig through many medical journals to find it. Doctors are uncomfortable with the findings because they’re not “normal” and thus out of anyone’s area of expertise. You can treat the symptoms, but there is no guarantee the standard treatment will work, because the treatments were developed with horses in mind.

The second worst thing for me is knowing exactly what is wrong and not being able to do anything about it. I have the diagnosis. Now what? Well, nothing. I can’t travel to an exotic location where the one person who is researching these illnesses lives. There are no clinical trials. It’s all hit or miss, mostly miss unfortunately.

The third thing that bothers me is that people with similar symptoms suddenly believe they have the orphan zebra. I’m not naming things in this post because I’m tired of others assuming they have these orphan zebra illnesses. This is a personal pet peeve. In some social media groups that focus on chronic illnesses, it’s called “the dyingist game” and people post to one-up each other on who is the sickest. This kind of behavior detracts from the seriousness of the illness.

I will give one example. Our local news outlets have spread the word that this year’s flu is deadly. In my home state, 23 people have died from it while over 25,000 cases have been reported. I was in a local emergency room last Tuesday. There were people there who had been waiting over 4 hours to be seen. Many were school aged children who were running laps around the waiting area. As I watched them be called back and sent out 15 minutes later, bottle of acetaminophen in hand, I wondered why they didn’t just stay home and let the bug run it’s course. Then I realized the media had turned a horse, the flu, into a zebra.

In the meantime, my zebras were running rampant in my body to the point where I was about to pass out. After 2 hours, I was placed into an ER room. I swear those zebras trampled my innards, worked up a sweat that translated into a fever for me and burned up all my glucose causing a diabetic emergency. A bottle of pain reliever was not going to fix this.

My piece of wisdom for today…don’t go looking for zebras. As the United States moves towards universal healthcare, accept that you may contract some horses and take responsibility for recognizing that and caring for yourself. Going to the hospital is not “cool.” Resources are going to get scarcer and you’ll be more comfortable at home anyway. Should a zebra come knocking, make sure you do seek appropriate care and learn all you can about how to care for your zebra. And should your genetic fate include an orphan zebra, well, learn as much as you can and keep an open mind.

Chasing Zebras

Medicine is a science of uncertainty and an art of probability.~ William Osler

Anyone who has a chronic illness can tell you that reaching that diagnosis was a long journey. Even the diseases doctors know the most about take a winding path to diagnosis. Imagine spending almost half your life trying to figure out what’s wrong with you. Being told it’s psychosomatic. Having doctors shake their heads and announce there’s nothing wrong with you.

This is my life. Fifteen years ago I had a doctor tell me that I needed to see a doctor who specialized in finding “zebras,” or odd diseases. For various reasons, that didn’t happen until about 6 months ago. My primary care doctor finally agreed he had met his match and sent me to a major medical center. I’ve been at this center for 5 months now, shuffling from one specialty to the next. Learning all about insurance and bureaucracy. Oh, and the bureaucracy!

I feel like we’re in the home stretch now. That elusive diagnosis may very well be confirmed tomorrow. Let’s just say that getting here has involved scores of things that no person would readily agree to unless they were desperate. I guess that made me desperate. Trust me when I tell you that there truly are some um, odd, people coming up with testing. I would really like to meet the inventors of some of the diagnostic tests (who came up with using three IV lines for three different dyes during the same exam).

Sadly, if this is the diagnosis, it explains much but there is no cure. There are definitive treatment options which is a plus as my doctors will no longer be fumbling around trying to figure out what to do. It’s not progressive in that I will die from it. But, it does get worse and the complications are high. Over 40% of the people diagnosed with this disease die from complications. Before that freaks you out, the statistics on this condition are that it occurs in 1:50,000 across the globe. There is still much to be discovered and new treatment options are being explored.

So, I may have caught my zebra. I’m borderline hopeful right now because labels are what doctors understand. Labels are what makes treatment possible. Labels are what help track progression. Think about it…you break your arm and the doctors know what to do. Doesn’t matter where you are, the treatment is pretty standardized. But, show up with cold/flu symptoms and what happens? Some testing to rule out infections and then treatment based on your provider’s informed diagnosis. Show up with vague symptoms that don’t fit neatly into a box…you probably have a zebra on the loose.

So here’s to zebras and the people who chase them. I really, truly hope mine has been caught.