Deny, Deny, Deny

“Sometimes reality has a way of sneaking up and biting us in the ass. And when the dam bursts, all you can do is swim. The world of pretend is a cage, not a cocoon. We can only lie to ourselves for so long. We are tired, we are scared, denying it doesn’t change the truth. Sooner or later we have to put aside our denial and face the world. Head on, guns blazing. De Nile. It’s not just a river in Egypt, it’s a freakin’ ocean. So how do you keep from drowning in it?”

- Meredith Grey, “Grey’s Anatomy”

*****

“Look into the depths of your own soul and learn first to know yourself, then you will understand why this illness was bound to come upon you…”

- Freud

*****

“[…] It’s hard to see the pain behind the mask

Bearing the burden of a secret storm

Sometimes she wishes she was never born

Through the wind and the rain she stands hard as a stone

In a world that she can’t rise above […]”

- “Concrete Angel”, Martina McBride

Friday was the first anniversary of my blog. For the weeks leading up to it, I was really planning to make a big deal about it; about how much has happened over the past year and how far I’ve come.

But the truth is, I haven’t come that far at all…

Yes, I’ve become a pro at telling people that I have lupus and rheumatoid arthritis. What I haven’t become good at, however, is accepting my limitations. Well, I think I’ve come to accept them for the most part, but I haven’t gotten over the fact that I need to tell the people around me about them.

It’s really hard for me to admit this. In many ways, I thought I was coming to terms with illness. I thought I was beginning to grow into this body, starting to feel comfortable in this skin.

But it has come to my attention that my filling this semester with loads of stuff has been for one reason and one reason only: to act like I’m not sick. This attempt has, however, been an abject failure. Why? Because regardless of what I was trying to prove to myself and/or others, I ended up last on the list yet again.

I tried to take comfort in things that I assumed would take away the emotional, and maybe even some of the physical pain. But the truth is, all these things did was cause more pain than was already there.

And then my body fought back and put me in the most pain that I’ve been in, in a long time. It was only then that I realized what the problem was. I am sick. And I can’t continue to live my life as if I’m not…

Would I like to think that there is some cosmic occurrence behind all of this? Sure, but honestly, I’m not sure what I believe anymore.

I used to believe that modern medicine was truly amazing. But it just goes to show that when you end up with all of the symptoms at one time that modern medicine has learned to treat, it is powerless against them. I mean, I’m taking medications just to counteract the side effects of other medications.

The truth is that there is very little beauty to this experience, no real deeper meaning or truth. There is no hope that one day life will go back to normal. Maybe there never was a normal. Maybe there was only a time when life didn’t suck this much.

Because even today, I think there is a part of me that hopes one day I’ll wake up and be pain and symptom free. Not just for a day, though. I’ll wake up and the world will feel different because I won’t be sick anymore.

I get scared because there are days when I’m so down that I think I might just throw in the towel. Because if this is how I feel now, how am I going to be able to deal with this forever?

Anger is a funny thing. It is a dark beast that hides in the pit of my stomach and rears its ugly head at unexpected times, and in unexpected places. It is like lava rising up in a volcano and it relentlessly destroys everything in its path. It is especially dangerous when it is directed at nothing and no one in particular.

I do desire to be happy, I truly do. But right now I’ve hit a wall, and I’ve dug myself into a hole that’s too deep to get myself out of on my own. In some ways, I feel like no one is listening, like I’m trapped in a glass box that’s filling up with smoke, and I’m pounding on the walls, but no one hears.

Because the truth is, if I wasn’t having a hard time facing the reality of my illnesses, I would never consider not taking my medication, I would never have skipped out on my quarterly blood work to make sure the Cellcept isn’t killing me, and I would never even give thought to how many times I’ve stared down my medication bottles, thinking how easy it would be to swallow them all down and never have to deal with any of this ever again…

I’m trying to stop the cycle of self-blame and self-loathing. I’m trying to remind myself that we do not choose our illnesses, rather, our illnesses choose us. And I’d like to think that somewhere there exists a reason for all of this. But I’m tired of fighting with myself, with my body, and with everyone around me. I’m scared that no one’s ever going to love me, really love me, illnesses and all. But most of all, I’m scared that I’m never going to feel whole again…

Emotionally Unavailable

“[…] Have no fear for giving in

Have no fear for giving over

You’d better know that in the end

It’s better to say too much

Than never say what you need to say again […]”

- “Say”, John Mayer

I’ve come to realize recently that I’m a magnet for emotionally unavailable people (namely men), not just in romantic relationships, but also in many of the other relationships in my life.

I think this is funny because in some ways, finding the right man is like finding the right doctor (see this CNN article about finding Dr. Right). And I’ve clearly failed at both, so there you go…

I was recently talking to someone who told me the story of when they were diagnosed with their illnesses. About how the doctor sat them down and basically said this is what’s going on and here’s what we’re going to do to make it better. This person seemed very comforted by this whole ordeal, as if it had to happen at all, that’s the way it should have gone…

I remember thinking, oh yeah, that’s how I thought it would be for me, too…

I think we all have this picture in our minds of what that moment would be like, of being told that your life is over, or at the very least, forever changed. It’s a scene we’ve seen thousands of times on TV.

But that’s why I always say my “official” diagnosis, because I don’t really feel like I ever got the diagnosis directly. I mean, sure, my doctor sat down with me, but I don’t get the sense that he really thought about what he was saying, that he really understood the magnitude of the situation for me and my life. That what for him was just a diagnostic code, for me, became my life. And I feel like the words have never been said in the same sentence. There is a distance between the weight of the situation and reality. And it’s something I find difficult to reconcile.

I remember the feeling of leaving the office that day and knowing that my world had changed forever in a million imperceptible ways that only I was aware of. And maybe even in ways that I still have yet to fathom…

I remember thinking how much better this year would be. Having a diagnosis made me feel powerful, in control, until I realized that there’s so much that I don’t have control over…

I’ll admit, I’m a very emotionally open and expressive person. But it seems to me that for some people, there is an unhealthy level of detachment. I’ve begun to wonder what my life would look like if it was the other way around, if I was the one who was completely emotionally closed off and unavailable, if I wore a poker face all the time. What if I became emotionally numb?

In reality, I know that will never happen because I’m not that type of person. I can’t detach my head from my heart or my heart from my head. And I guess given that, I will just have to accept the fact that people are going to hurt me.

It took me a long time to dissociate my rheum with the fact that he was the one who diagnosed me. I saw him as the executioner of my life, the killer of dreams and the murderer of my youth (okay, I’ll admit that’s a little overdramatic, but you get the point, don’t you?). I mean, seriously, how do you like someone who only gives you bad news? Maybe that’s because my first doctor had convinced me that I absolutely did not have lupus. And I was more than happy to rule that out… until I found out that I did…I harbored anger at my rheum for a long time, as if he really had the power to change the course of events.

It’s a bad sign, though, when you start to cry or show any type of emotion, and your doctor returns the “deer in the headlights” look you had given him several months earlier when he was rapidly firing questions at you to try and get a clear picture of your medical history.

Because comforting a patient he’s just dropped a bomb on is simply not in his job description.

Just like the guy who says he’ll never hurt you and then leaves you high and dry, alone and more miserable than you were before, and he can’t recall doing anything wrong…

I get it… I completely understand…

For some people, the capacity to feel other things for people other than themselves is just not possible.

“Frankly, My Dear, I Don’t Give A Damn”

It is a rare occasion that I air my feelings about comments left on my blog publicly. But in the haste and hurry of Grand Rounds, the following really got my blood boiling. The comment was left on my post, “Unnecessary Complications”*:

No problem...you are over extended and a little burned out. Don’t make major decisions like dropping out of school just yet. Make a list of everything you are doing. Include everything and prioritize the list. Make sure you put rest and relaxation on that list too. It should become obvious that there are some things that are not priorities that you can drop. Do you really need to speak at a conference or lead that arthritis walk? Learn to say “No”. I know it is hard when everything seems important but taking time to just “be” will energize you for the important things you want to get done. Good luck.

Okay, so I think it’s safe to say that everyone, including me, has established the fact that I have taken on too much!

(Gosh, I really hope this person isn’t a brain surgeon…)

But where does this healthy person get off telling me what should and should not be my priority? Because as a matter of fact, I see the DePaul conference and the arthritis walk as important steps for me in coming to terms with my illnesses.

Need I remind you that I was diagnosed only a year ago? I’m still at the beginning stages of this coping business…

I guess when hosting Grand Rounds, you run the risk of people unnecessarily thinking it’s okay for them to offer an opinion on a situation that they know absolutely nothing about.

This person makes it sound as if the situation is simple and clear-cut, as if I could simply “empty my plate” and all my problems would be solved. But it’s not easy, as all of these commitments I have made are integral parts of my identity, of who I am as a person, and without them, I don’t know what to do with myself.

I don’t get the sense that this person understands what it’s like to be in an academically stringent graduate program while chronically ill. And they don’t understand what it’s like to be in an environment where your priorities are different from everyone else’s. The day in and day out sludge of graduate school is hard enough on its own, add illness to the mix, and you’ve got a giant barrel of fun.

I don’t think this person was trying to be hurtful, but they weren’t being helpful, either. Everyone is absolutely entitled to his or her opinion and I don’t expect readers to agree with me all the time. But if you are going to give your “two cents,” it should either be because you know what I am going through, or you’ve been to my blog more than once.

To me, this brings up an issue that exists for those who are chronically ill, and it pretty much exists for everyone, which is that sometimes, well-intentioned opinions and advice just suck. Period. Full stop.

I know I’ve read that people have said horrendous things to other bloggers, like that they are lazy or should believe in god more, and shit like that. But regardless of what is said, the ignorance is palpable, and quite honestly, infuriating.

This is also about taking a stand, and sticking up for myself when people say things that they shouldn’t, like when someone tells me Oh, I have a friend who has lupus and she’s perfectly healthy. Usually I just shrug my shoulders a give a sheepish grin.

I know, I’m sure this person was just trying to be helpful, as well, but do they realize that it doesn’t come off that way at all? To me it sounds like victim blaming. Like not all lupus patients are as sick as you are, so what’s your problem?

Honestly, it’s people like this that make being sick difficult. It’s not about the fact that I don’t have my priorities straight. It’s about the fact that I have to mourn the loss of the life I will never be able to lead (that I’m desperately trying to hold onto), the one that I spent nearly 22 years building for myself. I have to come to terms with the fact that those who I have met since I got sick, or those that I have yet to meet, will only know me and my life with these illnesses. That’s something I find very troubling. And that’s something that healthy people can’t possibly understand until they’ve lived it.

This doesn’t mean that the life I was leading before was healthful, and it’s even less so now. But that also doesn’t mean that I can wake up tomorrow, and poof, that other life no longer exists and I’m totally fine with that.

I’m really tired of dealing with ignorance and stupidity peaceably (read: by not saying anything at all). While these kinds of comments obviously do hurt on the inside, on the outside I would like it to appear that I don’t care. But of course, I do…

So before you offer advice that has no bearing on my life or anyone else’s, maybe you should think about what it would be like to walk a mile in my shoes, hell, even a block in my shoes, before you pass judgment on how I live my life.

It’s called tact, people. If you don’t have any, maybe you should consider getting some! (And maybe ask for a side of compassion and empathy while you’re at it…)

* The comment referred to has since been taken down. This post wasn’t meant to call this person out, in particular, but rather, to point to a larger problem that exists in the gulf between healthy and sick people. And I’m getting kind of “sick” of it…

Grand Rounds Vol. 5 No. 29

“Lucy: Do you think anybody ever really changes?

Linus: I’ve changed a lot in the last year.

Lucy: I mean for the better.”

- Charles Schulz**

As I suggested in the call for submissions, the theme for this week’s Grand Rounds was loosely reflections on the way life used to be. For me, this theme was prompted by the fact that I have been a patient blogger for almost a year now, was diagnosed with lupus and rheumatoid arthritis almost a year ago to the day, and am finishing my second year of graduate school in a few weeks.

When I think about the way life used to be, I automatically think about change, and the myriad ways in which my life has changed over the past few years. Based on all of the submissions I received, this theme seemed to strike a chord.

Here is what medical bloggers (you!) had to say… Happy reading!

(Posts with a “*” were my personal favorites. They made me laugh and/or cry, and/or fit really well with the theme…)

*****

Out With The Old…

Learning To Accept The Unexpected

These bloggers suggest various ways of coping that all involve a little bit of “old-fashioned” acceptance for the things we cannot change…

* Marie, of the blog Nourish, poignantly reflects on what her life was like “Before and After” being diagnosed with multiple sclerosis.

How To Cope With Pain gives us the post, A Journey From Being Lost To Acceptance, which looks at the stages people go through when facing obstacles, and provides suggestions for moving towards the acceptance of life challenges, specifically for those dealing with chronic pain.

Amy at Diabetes Mine adds a little humor to the situation in Diabetes April Fools, where she asks patients to submit their stories and laugh in the face of chronic illness, proving that sometimes, laughter is the best medicine…

Maybe The Old Ways Aren’t The Best…

These bloggers explore how the old ways of operating around a variety of medical issues just aren’t working the way they should…

* The Samurai Radiologist over at Not Totally Rad warns (in a somewhat comical way) that powerful and dangerous bacteria can grow on stethoscopes and that like radiologists, who don’t carry them, other physicians should “Just Say No To Stethoscopes” in order to protect patients.

Walter at Highlight HEALTH questions the health benefits of the traditional “meat and potatoes” diet in the post “Meat Consumption And Mortality Risk,” which explores research showing that a diet high in red and/or processed meat isn’t necessarily good for you, and can actually increase your risk of death.

Jeffrey from Nuts For Healthcare addresses the impact that the country’s economic crisis is having on the government and private insurance industry, suggesting that the old ways of operating aren’t working, in the post “striking middle ground in a public health plan?”

Reality Rounds looks at what the job description of a nurse was in 1887, in the post “We’ve Come A Long Way, Baby”.

In the post “Mr. Bush, Mr. Obama, and the Amish Bus Driver”, Dr. Rich at The Covert Rationing Blog looks at the issue of medical professionals refusing to conduct certain medical procedures because of their own personal beliefs. Assuaging to collective rather than individual interests, Dr. Rich argues that the “traditional” doctor-patient relationship has become obsolete.

Am Ang Zhang, The Cockroach Catcher, laments the current state of the medical profession, in favor of a more paternalistic approach, in the post “House M.D.: 95% vs 5%”.

The More Things Change… The More They Stay The Same

* Maria, from My Life Works Today!, talks about the songs that have impacted her life and continue to comfort her on her journey of living life with lupus in the post “Music, Mileage, and Memories”.

* Laurie from A Chronic Dose feels fragmented. In her post, she laments the difficulties of balancing daily life and illness that occur, even when one has dealt with being ill for a long time.

In the post “Is Marriage Good or Bad for Your health?” Barbara from In Sickness and In Health suggests that while life with illness is about uncertainty, so was life before (or even without) illness, and that all situations can be complex and contradictory. She writes about one of them…marriage.

David from the Health Business Blog provides part one of a podcast of an interview with Bob Stone, the co-founder of Healthways, a disease management company founded in 1981. The podcast explores the reasoning behind why there hasn’t been widespread healthcare reform in the United States. You can listen to the interview here.

* Barbara from Florence dot com gives us the story of a Swedish ship that sank several hundred years ago. She connects this story with the epidemic of adverse events in medical practice occurring today, suggesting that like the ship, there is no regulatory mechanism in place to prevent such events, in the post “Lessons from a Sunken Ship”.

* In a post entitled “A Sordid Experience,” Dr. Cheah, a physician in Malaysia, paints a shocking picture of the conditions in local medical wards.

Everything Health vents about conservatives challenging healthcare reform that hasn’t even happened yet, in the post “Foxy Richard Scott Wants to Protect Us”.

Inside Surgery looks at the Carla Nash case and explains the general treatment strategies that are used in all critical medical cases.

In With The New…

Snake Oil And Other Fancy Things

These bloggers talk about change, and new and different experiences, some which are good, and some which aren’t…

* Kerri from Six Until Me writes about the kindness and compassion of a stranger who bails her out of a very tricky diabetes situation in her post, “Employee of the Month”.

Buyer beware! If it sounds too good to be true, it probably is… It’s sad but true, Paper Mask warns us against fraudulent health scams.

Duncan Cross expresses frustration over the public relations campaign of the pharmaceutical lobbying group PhRMA, in his post “Sharing Miracles?”

Other Things Amanzi provides us with a sardonic (and admittedly bizarre) tale, suggesting that no matter what, “all bleeding stops”… eventually…

Nancy at Teen Health 411 emphasizes the importance and ritual of food preparation in her post on “The Culture of Food”.

Paul from Medicine for the Outdoors examines new research that suggests “changes in leisure time physical activity,” specifically spending more time being active, significantly reduces mortality risk. Now that it’s (finally) spring, what are you waiting for? Head outside!

Thought exercising was good for you, right? Well, it can be unhealthy if done the incorrect way. The Fitness Fixer provides tips on how to use fitness equipment the healthy way in order to avoid injury and pain.

Louise from Colorado Health Insurance Insider talks about the potential benefits of a program offering “free health care for some laid off workers”.

Allergy Notes informs readers that “mold and mothers smoking during infancy are the strongest risk factors for pediatric asthma”.

Technology: Friend Or Foe?

These days, you’d be hard-pressed to talk about change without looking at the way technology has revolutionized our lives. In an age when you can be-“friend” your doctor or patient at the click of the button, one has to wonder when it all becomes too much…

* Adina at Heal Spiel gives us the post, “Should Medical Students Make Fools of Themselves on the Internet?”, which looks at the potential positive impact that broadcasting their lives on social networking sites, such as Facebook, can have on medical students.

Dr. Shock investigates the pros and cons, and the various ways in which hospitals are using “social media”, such as twitter, in a post entitled “Twitter, Doctors, Hospitals and Medical Education.”

Clinical Cases and Images explores the reasons why electronic medical records may not be that helpful when medical professionals use a “copy and paste” method.

* On the flipside, in Getting Away From It All, Nurse Ausmed at Nursing Handover explores what it would be like for a medical professional to go to a developing country and practice medicine without the technology one is accustomed to using.

*****

Don’t miss an edition of Grand Rounds ever again! You can subscribe to the Grand Rounds RSS feed or an aggregated RSS feed that includes Grand Rounds, Change of Shift, and Surge Xperiences.

Thanks to all who submitted posts for this week (and everyone’s encouragement in hosting my first Grand Rounds)!!!

Next week’s edition of Grand Rounds will be hosted by Pharmamotion.
*****
**(Schulz, Charles. “2,522.” The 2,548 Best Things Anybody Ever Said. Comp. Robert Byrne. New York: Fireside, 2002.)

"Grand Rounds" Is Here Next Week!!!

I’m hosting Grand Rounds next week. This is my first time hosting and I’m really excited about it. The theme is loosely reflections on the way life used to be. My blog turns one in a few weeks and I’m about to complete my second year of graduate school. Plus it’s spring, always a good time to come out of hibernation and reflect…

I’m feeling kind of nostalgic for the “old” days, when a medication schedule didn’t rule my life, but I’m also feeling empowered by the fact that now I’m living my life with illness, and my illnesses aren’t dictating my life (for the moment).

So whether you’re a doctor, patient, or an all-around medical aficionado, please submit posts to gettingclosertomyself@gmail.com by 11 p.m. on Sunday, April 5. Make sure you put Grand Rounds in the subject line, and include your name and a link to the post in your e-mail.

Town Hall Speech

What follows is a speech I gave tonight at a town hall meeting about disability and access put on by the Graduate Employees Organization (GEO) Disability Access Committee, of which I am a member. As I indicate in the speech, this was the first time I have spoken to a group publicly about my illnesses…

I graduated from the University of Michigan in April of 2007 and was set to start the Sociology PhD program in the fall. While I thought that there was nothing to possibly derail this plan, I was very wrong. Throughout my senior year of undergrad, I had repeated strept throat and pink eye infections, bizarre stomach bugs, and the telltale muscle and joint pain – at first only after I worked out – then eventually, the pain never went away.

While I was able to start graduate school in the fall of 2007, my whole world quickly fell apart. I was in pain all the time and had unexplainable symptoms that would come and go in the blink of an eye. I had to go to several different doctors before I was able to find someone who took my concerns seriously…

In April of 2008, I was diagnosed with lupus and rheumatoid arthritis. While I struggled with frequent doctors appointments and medical tests, and not feeling well, I also struggled with what these illnesses would mean for my graduate school career, and more broadly, my life. Simply asking my department for symbolic recognition of the situation and its varied consequences was met with resistance and unease. I felt like I was met with the implicit charge that:

If I couldn’t cut it for any reason, I shouldn’t be here…

This journey has been fraught with failed attempts and missteps. The tangible changes, in many ways, remain to be seen. I know that my situation is unique in that it started while I was in graduate school and that I have a set of very unpredictable illnesses. But should you become a player in this game, or if you are already in it, you probably know, that it is not for the faint of heart.

Still, as I’m sure there are many others out there, as well, I mostly suffer in silence. As my cohort mates celebrated the end of our first year of graduate school last April, I was at the hospital receiving outpatient intravenous therapy. A stark contrast to the 22-year-old, graduate student life I thought I’d be living. It is only a recent innovation that I don’t rush to the bathroom to take my medication five times per day so that no one has to watch me pop pills and wonder why.

There is no doubt that illness is a lonely pursuit. It is isolating. It is a litmus test for friendship. And most of all, it is exhausting to wear the brave face all the time and have everyone around you be none the wiser. This is especially frustrating that when you do ask for help, you are met with ambivalence, and sometimes, downright nastiness.

It is ironic that those of us who are sick and tired, who are the most vulnerable, are expected to lead this fight on our own. As sociologist C. Wright Mills wrote in 1959:

Men do not usually define the troubles they endure in terms of historical change and institutional contradiction [...] They do not possess the quality of mind essential to grasp the interplay of man and society, of biography and history, of self and world. They cannot cope with their personal troubles in such ways as to control the structural trans-formations that usually lie behind them.

The truth of this matter hinges on Mills’ words. This personal problem, of illness and disability, is in fact, very much a public issue – even for those of us with invisible illnesses and disabilities. And until it is seen as such, the individuals that sit before you tonight will daily have to battle in order to gain the recognition and help they deserve.

*****

As I expressed earlier, while individual action and change are important, the difficulties incurred by Katie, Walt, and I point to much more deeply imbedded, systemic issues, issues that will not be surmounted by individuals alone.

There are many matters that still need to be resolved. People are often hesitant to attach labels to themselves or to be open about such issues. While I have become adept at talking about my illnesses, this is, in fact, the first time I am publicly disclosing them in a forum such as this.

At the heart of the matter, is often that people do not stand up for issues that do not directly involve them. As journalist Richard M. Cohen wrote in Strong at the Broken Places: “Know this. Ninety million Americans battle chronic illnesses everyday. Welcome to your future.”

While this statement may sound harsh and threatening, it is the truth. Although chronic illness and disability may not be on your radar screen today, they may be your reality tomorrow. That was the case for me. While disability issues were in the back of my mind, I never expected them to become “my” issue. But now that they are, I hope that with the help of others, something good can come from my experience.

What is truly needed, then, is a network of students who are disabled, chronically ill, or are aware of the importance of such issues, not only to those who are directly affected, but to the University community as a whole. We all deserve a living, learning, and working environment where we feel accepted and appreciated, and where our voices are heard, not because we are alone, screaming at the top of our lungs, but because there is a chorus of voices harmonizing together.

Unnecessary Complications

Yes, I’m back…And to rant…

Life as of late has become increasingly complicated. I don’t usually have difficulties with expressing how I’m feeling or talking about what is going on with my life on my blog. But the past several weeks, I have been pretty busy and feel like I’ve been bad at blogging, maybe even bad at everything.

And illness isn’t even a factor. No, I take that back…Illness is always a factor, and that might just be part of the problem.

I feel like I’m being pulled in a thousand different directions; in order to do everything and please everyone I feel is worth pleasing, I can’t take care of myself (or I can’t be sick).

My “To Do” list keeps growing longer and longer, and less and less is getting crossed off at the end of the day because I’m exhausted and in pain. Here’s just a smattering of what needs to get done over the next several months; hosting Grand Rounds, several doctors appointments and blood work, arthritis walk, DePaul conference, teaching my own class, studying for my preliminary exam, presenting at the American Sociological Association conference, taking and passing my prelim…And oh yeah, did I mention eating, sleeping, and breathing?

And all I keep thinking is:

Can I hold out and not flare until August?

Can I hold out and not flare before tomorrow?

I’ve had several serious conversations with my mom recently about possibly leaving school. I don’t necessarily want to do that, but yet again, I find myself at a place where I feel like I can’t be in graduate school and stay healthy. I can’t do everything I want to do, plus attempt to have a life outside of school, plus take care of myself.

That’s the whole point of what I’m trying to do, advocacy-wise, right? I’m trying to help other students stay in school while coping with illness. But what if that’s just not possible? I’m not a quitter. I live for people to tell me that I can’t do something so I can prove them wrong. But I’m not sure how much fortitude I have left in me.

I keep asking myself:

Do I need a PhD to do what I want to do?

(Do I actually know “what I want to do?”)

How will having a PhD help me or hurt me?

How will NOT having a PhD help me or hurt me?

How bad will I feel abut myself if I “quit” school?

Aside from illness, there has been another situation in my life recently when I was very frustrated because in the end, “I had nothing to show for it.” I had come through it, but there was nothing tangible to suggest that it had ever happened at all.

Sometimes it’s better not to reinvent the wheel. Sometimes the status quo is a good thing. Sometimes boundaries were meant for a reason. There are some lines that just shouldn’t be crossed. Sometimes change is a bad thing.

If I’ve learned anything from illness, though, it’s that there are important imperceptible changes; changes on the inside that mean more than any changes on the outside (“literal” changes) ever could. I became so obsessed with proving my friends wrong and giving others the benefit of the doubt that I lost sight of what was really important…me.

So I can only hope that there are changes that have taken place inside of me that I simply haven’t been perceptive enough to notice yet…

Because right now I’m in a place that I really don’t like…And I really only have myself to blame…

I hope this doesn’t sound like a “poor me” post, because it’s not meant to be. This is more of a “gosh, why do I always have to be such an idiot?” post. Because I’m at that point just between “normal” and flare when I feel like I’ve been fighting off a cold/flu-like thing for four days. And I have the power to set things in the right direction. But will I? Probably not…That says it all…

“Hips Don’t Lie” (But Faces Do…)

“I’m fine, and my hips are fine. My false knee is fine. My false hips are fine. Everything’s cooking.”

- Liza Minnelli

Why the title of this post, you’re wondering? Because I think my hips are a metaphor for my life, albeit in a rather awkward and roundabout way. My hips tell me a lot about how I’m doing…

This week was not so good in the health department. I’ve been exhausted and in pain. But the main thing is that my hips have been giving me a lot of trouble. And they seem to be one of the first things to flare up, especially when I overload my already too heavy bag and trek nearly a mile to campus.

The point is, you can carry around excess baggage until you’re blue in the face, but whether your food indulgences go straight to your hips or you’re carrying the wait of the world on your shoulders, it’s always the hips that feel the brunt of it (sad, but true, I know).

We wear masks to conceal are true feelings, and I’ve become rather adept at hiding my pain from others. Sure, there are some who see through it, but it all comes back to the hips. One friend of mine told me that she used to look over at me during class. If my legs were crossed, she knew it was a good day. If my legs weren’t crossed, she knew I was in pain. Pretty ironic, huh?

Something that surprises me is how little we really know about the people in our lives, whether it’s because they haven’t told us or we haven’t bothered to ask (or have been afraid to). But when you’re walking slowly and can’t keep up, or you’re limping, it’s pretty obvious to others that there’s something going on…

Yes, I have a love-hate relationship with my body; I hate to love my body, and my body loves to hate me. And I am trying to work through this, I really am. But yesterday morning was one of those times when I pushed myself to workout, and now I am completely regretting it.

So, maybe the saying shouldn’t be “read my lips,” but rather, read my hips. On second thought, maybe not…

At least for me right now, it seems like it’s all in the hips…

Talking The Talk And Walking The Walk

My blogger friend Maria over at My Life Works Today has asked me to offer up some tips to my readers about living well with illness. In her post, Tying up loose ends, she offers some great tips for keeping your life in order as far as chronic illness (and all of the medical information you’re guaranteed to accumulate) is concerned.

My tips aren’t quite as practical as Maria’s, but I wanted to offer up a different set of points. So here are some tips for my readers:

Talk the talk and walk the walk

Especially when you are young and chronically ill, it’s hard to find your “authentic” self. But this is a necessary step in being able to live well with illness. So be true to yourself, your desires, and your dreams. But also be honest with yourself about what you can and cannot do because of your illnesses.

You can cope your own way

No one has the right to advise you on how to cope with illness. Now, I’m not advocating negative coping behaviors like abusing alcohol or drugs. But I do think that if your coping mechanisms aren’t bad for your health issues, you should certainly do whatever works for you. Me? I cope by reorganizing drawers at three in the morning. Like I said, whatever works (and is not detrimental to your health).

The point is, if you aren’t listening to the signals your body is sending you physically and/or emotionally, you aren’t going to be able to help (even possibly save) yourself. You are the person who knows you the best, so take some time and listen…

Fade out

I find that I’ve been talking about my health a lot lately in diverse settings. The one thing that has come out of this is telling my story. That seems like a difficult and daunting task to me. To actually sit down and write something coherent and cohesive. In reality, there is value to stepping back and looking at the situation as a whole, rather than the everyday minutiae. I’m not saying those things aren’t important, because I blog about them all the time. But sometimes stepping back and looking at the broader picture is a necessary task in order to keep moving forward. (It also makes the story a bit more balanced i.e. not all positive or all negative)

Treat yourself like you treat others

Usually it’s the other way around – “Treat others as you would like to be treated” – but the truth is, many of us, myself included, treat other people much better than we treat ourselves (even if only in a metaphorical sense).

Be your own health advocate (but have someone else on standby just in case)

Many of us know, or come to understand after experiencing illness, that the best person to fight for you is yourself. This is counterintuitive, that the sick and tired have to advocate for themselves, but that’s how it goes.

Especially as a young and chronic, it’s hard to imagine being incapacitated to the point of not being able to make my own health decisions. But unfortunately, this is something that can happen to anyone. I’ve been thinking a lot about who I want my health advocate to be, and I’m inclined to have it be someone who I don’t have strong emotional attachment to, so that they can make the most rational decision possible if called upon to do so. Although I have yet to figure out exactly who the person for this job is, I think we can all agree that chronic illness is unpredictable and you have to be ready for anything.

The point of all these tips revolves around a common theme – respecting oneself and caring enough about oneself to get the care you need and deserve are absolutely essential in living well with illness. It doesn’t matter if you are new to the club or a veteran, before you can really get organized health-wise, you’ve got to examine the bigger picture of your life first. As the title of Maria’s, blog post suggests, you’ve got to tie up those loose ends…

I urge you to check out my post, Building A Better Me, Part 1: Being A “Smart Patient” Matters*, which is the first post in a blog series that I’ve started. There I offer a more practical list of tips for dealing with illness.

I also urge you to add any advice that you have for others as a comment to this post, or post advice on your own blog. So much about the virtual community of the chronically ill is to help each other learn and grow.

Turning Back The Clock

“Be happy for this moment. This moment is your life.”

- Omar Khayyam

Well, actually, we just sprang forward, but aside from the fact that I forgot to change my clock (until I saw my cable box Sunday morning and realized I was an hour behind) and am upset that I lost an hour of sleep, I’ve been thinking a lot about if I could turn back time, to what part of my life would I pick to go back to? (And yes, that entire paragraph is one sentence… and I’m proud of it!)

Basically, this comes out of two things that happened to me over the weekend. Saturday morning, I woke up, nauseous and dizzy, with an annoying throbbing going on in my head. No, I wasn’t hung over. It was my friend lupus rearing its ugly head. It was one of those times when all you can do is hope to throw up or die. Really, it was that bad. After having to lie on the couch for nearly three hours, I finally started to feel better. But I’m still not feeling great. I think the change in weather has a lot to do with it. Rheumatoid arthritis is not fond of the cold of winter, and lupus is not fond of the humidity of spring and summer. So let bygones be bygones (I just can’t win)…

This incident really frustrated me, though. I’m back on my medication schedule and am doing the best I can, but that still isn’t good enough. This type of thing happened almost on a daily basis last year before I was on medication. But it hasn’t happened for a very long time. And I absolutely hate not being in control of my body!

Overall, Saturday was a pretty bad day, trying to get my emotions in check and trying to catch up on all the work that I’m super behind on. I was having a minor (maybe major) freak out and my friend suggested that we go to the gym.

I haven’t been to the gym in well over a year. I’m self-conscious about my body… I’m self-conscious about everything. When I work out, I do a video in my apartment. Two miles in half-an-hour seems pretty good to me (and no one has to see that I can’t lift my legs and arms high enough). But I desperately needed to relieve stress, so I went to the gym. And I survived!

I was pretty despondent Saturday. That’s the sickest I’ve felt in awhile without it being self-induced. On the other hand, though, I was pretty amazed that I walked on the treadmill for 35 minutes (2.5 minutes of which I jogged), and then I did an elliptical-thingy for 15 minutes. It was nice to push myself in that way.

Pretty ironic, huh? In the morning I felt like I was going to die, and then I felt well enough to workout more than I have in a long time. But there never seems to be a victory march that isn’t overshadowed by illness. The constant cycling of these diseases, especially within a 24-hour period, is what really gets to me (both physically and emotionally). I’ve really tried to stay positive lately, but sometimes that’s incredibly difficult.

If only I could go back to the day before I got sick…On the other hand, I’ve learned so much about myself in the last year and a half. And maybe more than learning about myself, I’ve learned what I don’t know about myself – and these are realizations that I never would have come to otherwise. I would have been stuck in the same old box, living the same old life.

Being sick and having a body that pretty much does what it wants when it wants sucks. But there are a lot of people I know that are really emotionally detached from their lives, and they aren’t really happy people. And they are healthy. It seems to me that we always want what we cannot have...

The point is that I can’t be stuck ruminating about the past and the things I can no longer do. And I can’t always be waiting for the future to come, hoping that there is something better down the road. I have to live in the now. I can’t undo the past and I certainly can’t predict the future.

The experience of illness is fraught with moments of lurching forward and then being catapulted back to the reality of a situation, which has the upper hand in the control department. This is undeniably difficult. I went a little over two months feeling pretty well. And then I’m knocked out with a punch to the gut. It’s not a good feeling, but I don’t really have much choice in the matter, do I?

Holding Ourselves (And Others) Accountable

For me, there has been a lot of self-blame that has come with illness. It’s easy to see how that can happen when people who are young and healthy abound. That said, I think it’s important to step back and acknowledge that our illnesses don’t only affect us. They have a broad impact on our lives, including the people we surround ourselves with (even those who are young and healthy, and who act like they don’t care).

As I’ve counseled several friends recently in various aspects of their lives, it feels good to finally be able to give advice to others. I feel like I’ve had the monopoly on being the advice getter for a while now, so to be in the position of advice giver feels pretty good. And I think this is key. Sometimes we need to look at our situation from the outside in order to gain the clarity we need – or we need to look at the situation of others in order to look more positively and compassionately at our own.

From Patient to Doctor (Sort of)

I think sometimes we need checks on ourselves. Not like, “Oh, am I still breathing?” kind of checks, but rather, “Am I doing the best I can?” kind of checks.

Being chronically ill, rarely leaving the role of the patient, holds a person accountable. Every day, I am accountable to myself: Did I take my meds? And did I take them at the right time? Am I eating well and/or enough? Am I getting enough rest?

It is certainly tiresome and annoying to never turn off that voice inside my head that cycles through all the things I should be doing to be as healthy as possible. It is frustrating to have to be that disciplined. Because let’s face it, when you’re chronically ill, staying healthy can be a lot of work. But it is also good to have built in checkpoints for myself. When dealing with a set of unpredictable illnesses, it is often easier to deny having any control at all than to take responsibility for the small aspects that I do have control over.

Running around for eight hours on two Pop Tarts and coffee, for instance, is not smart. And at the end of the day, I pay for those kinds of lapses in judgment. I can’t push my body to the breaking point anymore. If I push, my body pushes back at me even harder.

And after round five*, I’m down for the count.

From Insider to Outsider

I’ve gotten used to the fact that only the people that truly care about you ask how you are doing. And it’s hard when you’re chronically ill, because that question is kind of a red herring. But when someone actually offers real compassion and concern, it really strikes a cord. And it is difficult to see the pain and anguish on someone else’s face when they really want to help, but there’s nothing they can do. If I could reach out to those people, I would tell them that just being there is enough. Because it so rarely happens that a person asks how you are doing in more than an obligatory fashion.

It’s hard when someone is asking how you are and they are standing face-to-face with you expecting an honest answer. Trying to be tough and fighting back tears, it seems the only real answer I’m able to give most of the time is I’m okay. I’ll be fine, even when my whole body hurts and the pain is so intense that I can’t think about anything else.

And I can imagine that when I do end up in a serious, long-term relationship, it will probably be much harder for that person to deal with my illnesses than it is for me. I think at this point I have a pretty high pain threshold, although I do tend to get cranky when I’m really in pain. But for a person to have no other choice but to sit idly by when a situation seems to demand action is difficult for anyone.

I know this because I’ve heard that same despondency in the voices of my parents many times. Just tell me what I can do for you. Isn’t there anything I can do? And usually, there isn’t. It’s hard to live in a world where few people are willing to help, show care or concern, and those who are and do, can’t really do anything. I feel the pain of that, too. And I definitely wish that I could spare them that pain.

From Doctor to Patient

I recently spoke with a doctor I know who is dealing with illness. This isn’t one of my personal physicians, so it’s not so weird. But I definitely felt bad, as this person expressed finally knowing what it was like to be a patient, and not liking it very much.

In some ways, I almost wish that at some point, all doctors could experience this. Not that I wish sickness on anyone, but I wonder how care and demeanor would change if doctors knew 1/100th of what it was like to be a patient.

Unfortunately, I guess I’ve gotten so used to being sick, that I forget that people can potentially go their entire lives without having a major health crisis. It seems unlikely, but I guess it does happen. So it definitely makes me wonder how many doctors have actually experienced what it is like to be a patient, especially in a long-term scenario.

I wonder: Do doctors get better care than we “non-physician” patients do? Are doctors’ bad patients or do they actually comply with the orders they are given by their own doctors?

It’s difficult for me to imagine how things would look if the situation was reversed and doctors became patients, but I can only imagine that it would give a whole new meaning to compassionate care.

From Patient to Care Giver

Lately I’ve been having difficulty managing my health. There are a lot of reasons for this, but it strikes me as odd because if I was a caregiver to someone else, I certainly wouldn’t shirk, or at least I hope I wouldn’t, on taking care of that person.

If it were an immediate family member or any other important person in my life who was ill, instead of me, there would be no decision about what would come first in my life. The priority would be obvious and straightforward (hopefully). Even if they didn’t want me to, I would probably try to drop work or school (or whatever) to be there for that person. So why can’t I do that when it comes to my own health? And why do so many of us push through, even taking on additional care giving tasks along with being chronically ill, yet so often put our own health and well-being at the bottom of the list?

“How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these.”

- George Washington Carver

Because the role of being a patient is ever-present for those of us who are chronically ill, I think we tend to forget that we are held accountable for other aspects of our lives, as well. As people, we are held accountable for our attitudes. No matter how little control we have in our lives, the one thing that we always (for better or for worse) have the power to control is our outlook on life. Because the truth is, doctor or patient, insider or outsider (etc.), we are the makers of our own happiness.

* how many times a day I take meds...

Mis(s). Directed And Mis(s). Understood

“I’ve been down this road walkin’ the line

That’s painted by pride

And I have made mistakes in my life

That I just can’t hide […]

I’ve been searchin my soul tonight

I know there’s so much more to life

Now I know I can shine a light

To find my way back home […]”

- “Searching My Soul Tonight”
(Theme Song From Ally McBeal),
Vonda Shepard

A lot has been going on in my life recently; broad, abstract questions arising from small, specific (hopefully isolated) incidents. I know, that makes about as much sense as I feel my life does right now…

I was off school this past week, which was nice. I took a trip to see a friend that lives three hours away by train. I was excited about getting away, but came back exhausted and drained, which was my own fault. Between hormones, the weather, late nights, a wacky medication schedule, and train travel, it was just too much for my body to handle. I’m definitely flaring.

This chronic illness routine gets old really quick. It wasn’t so much that having to pack all of my medication was a pain, as much as I was surprised at how quickly I was able to forget that I needed to be taking it. Truth be told, my medication schedule has been pretty thrown off for about the past month. But it’s always sobering to realize what I would feel like without it. And so, while I was only going to be away for about two and a half days, I decided that it only made sense to pack a weeks worth of meds, just in case.

Being chronically ill definitely puts a damper on being spontaneous, and maybe that’s why I feel so ill at ease making plans not that far in advance. And maybe that’s why lately, any opportunity to be spontaneous is desired greatly and often regretted afterwards.

While I recounted for my friend some of the exploits of the past six months (late nights, tequila shots, etc.), her response was something like most of that doesn’t sound like you at all. Lately, I wonder…would I know a “me thing” if it bit me in the ass?

This profound crisis of identity that has been going on for the past year or so is really bad. And it needs to end soon.

When I think about the fact that I’ve only been in graduate school for a year and a half, and that I’ve only been dealing with illness for about the same amount of time, it’s sobering. It feels like decades have gone by. Not that I’m wishing my life away, but the sludge could sure move a little bit faster. When do I get to the good part?

Clearly, what I have come to realize, is that graduate school is not the place for self-exploration and self-understanding, not the place for finding oneself, and not the site for teenage rebellion that’s happening a few years too late.

This is not the time to “feel your wheaties” (of any variety). Those who party harder than they hit the books are shunned, seen as slackers. All that fun is kid’s stuff. That’s for college, not for graduate school. Even so, if you aren’t 100% committed, for whatever reason, there is definitely a learning curve. The thing is, getting into graduate school makes you think that the next five, six, or however many years it takes you to get a PhD are set. But sometimes, life has other plans, and it’s often difficult for graduate school to accommodate massive life occurrences, such as illness.

And maybe that’s why those of us who become academics do. While we thrive on asking tough questions about the world, we never seem to have the time or energy to ask tough questions about ourselves.

And maybe that’s what has been so difficult about the past year and a half in dealing with graduate school and chronic illness. The lingering question is not so much Why me?, but rather, Who am I and how did I get to where I am today? And does my current direction make sense with the curve balls that life has thrown at me?

Lately, my whole world is off kilter. I went to the bank recently and put money into an account that I had closed several months ago. Luckily (and surprisingly) getting the money into the right account was an easy fix. But come on, where is my head?

I’m rational and practical. I like order in my life. I think I’ve started to worry that I’m always the downer, the party pooper, the one sucking the fun out of life.

All this is to say that I feel like I don’t really know who the heck I am. Sometimes I feel like a chameleon, adapting to the wants and needs of those around me, and not to my own needs, wants, etc.

When I flare, I tend to retreat. The other day is a good example. I was flaring and feeling a bit off, so I never got dressed or left my apartment. But the truth is, I have dragged myself many places for others, only to realize that after, I’m even more tired and drained than I expected to be.

It’s difficult to try and explain to my friends how I feel on a day-to-day basis, especially considering how quickly symptoms come and go. And no matter how hard some of them try to understand, it often seems easier for me to follow their plans than try and explain why they won’t work for me.

On a slightly more positive note, I am excited to say that the paper I submitted to the American Sociological Association conference was accepted to the Disability and Social Life section, which is very exciting. But the thought of having to fly out to California in August for my first professional conference and presentation, and all of the illness-related complications that could ensue, is particularly daunting, especially considering what a shock to my system two days of traveling through Michigan was.

The whole point I’m trying to make here is that I’m not living my life realistically right now. At some point, exactly when I’m not sure, I decided to try and stick it to my illnesses and live the life I would be living if I wasn’t sick. But that obviously doesn’t work. I’m not sure when I made this shift, but I do have to wonder about the following: when does the power of positive thinking become denial?

Lupus Advocacy Day: March 3rd, 2009

Here is some information about how you can get involved in Lupus Advocacy Day that Wick from the Lupus Foundation of America Blog (On the Road to a Cure) requested I post for my readers:

March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.

· Call your Representative and Senators and tell them to provide more funding for lupus research. To find your Senators and Representative, go to http://www.capwiz.com/lfa and click on the link “Call your Members of Congress Tuesday, March 3rd!” Then you will enter your zip code, and get the contact info for your senators and representative.

· Send an e-card. Raise awareness about lupus and the need for new treatments by sending your friends and family an e-card. Go here to send an e-card.

· Donate. With your donation we can continue to fund cutting-edge lupus research. Go here to make a donation.

Facebook
There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.

“YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa”

Twitter
If you have a Twitter account and are joining us for Advocacy Day, you can “tweet” your Advocacy Day experience. You might want to post updates such as “Heading to Capitol Hill now” or “Meeting with Senator Young.”If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested “tweets.”

“Support LFA’s Advocacy Day tomorrow. Tell Congress 50 years without a new
FDA-approved lupus drug is too long. http://www.capwiz.com/lfa”

“Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa”

Building A Better Me, Part 1: Being A “Smart Patient” Matters*

“Wham! From the very first moment of a health crisis, you’re unprepared and not in control […]” (170).

Welcome to my first blog series. I’ve been on a self-improvement kick lately, so I’ll be exploring a variety of issues, some which deal specifically with chronic illness, others that do not. I hope that you find some of these posts useful for your own life, and that you’ll humor me as I do some rather public self-exploration.

When I embarked on this journey of self-discovery, which basically meant scouring the shelves for books related to various aspects of self-improvement, and devouring them as quickly as possible, the one thing I promised myself is that I would try and stick to looking towards the experts for advice on the things in my life I was looking to improve.

That said, I wasn’t too impressed with myself that I scored a 19 out of 40 on the “Smart Patient” Quiz. On the other hand, though, I wasn’t all that surprised. When you’re not expecting more than annual visits to the doctor and a few minor ailments here and there, when you’re hit with a chronic illness, you’re thrown feet first into the medical “ocean”. And honestly, it’s not always that easy to keep up. It’s literally sink or swim…

While I don’t pride myself on being enamored of Oprah’s cronies, I’ll admit that “You: The Smart Patient” by Drs. Michael Roizen and Mehmet Oz was very useful and user friendly.

They say, “[…] our patient really plays a triple role, he or she is our partner and our chief, and also the very citizen we’re protecting and serving” (13). I really like this analogy because a lot of times, the doctor-patient relationship can be very unbalanced. It’s nice to hear doctors acknowledge that we are their business, front and center. However, much of the onus is still on us, the patients… “Most patients don’t do a great job of communicating with their doctors […]” (41).

In my opinion, these are the top 10 tips that I gleaned from the book:

1. Ask questions of your doctor. “Sweat the small stuff.” In other words, don’t lay low. “Speak up!”
2. Know your family history.
3. Find a doctor who is experienced, but young enough to see you through the majority of care over your lifetime (Not sure this is one is doable for some us in the young and chronically ill category).
4. Explore cutting edge techniques, the best doctors, and hospitals (“size matters”).
5. The pharmacist is a great resource for medical information.
6. Always get a second opinion (you shouldn’t feel guilty about doing so).
7. Appoint a health advocate.
8. Don’t believe everything you read on the Internet.
9. Even though you are a patient, you have rights. So use them or lose them.
10. Be skeptical about and cautious of alternative medicine therapies and remedies. That doesn’t mean you shouldn’t utilize them, just always make sure to consult your doctor in order to avoid any interactions with medications you are already taking.

And remember, all of this is the advice for the (currently) healthy folks… Means some of us “sickos” have a lot to learn…

Overall, “You: The Smart Patient” is a good resource to look things up in as needed, but I don’t recommend you read it cover-to-cover like I did, and I don’t feel it is particularly useful for chronically ill people (especially those of us new to this camp). For instance, one suggestion is that you take all of your actual medication bottles to doctor’s appointments. Really? You’re lucky that I take my medication, so don’t push your luck…

The main thing that this book emphasizes, which I think is critically important, is that we have to be our own health advocates. While it’s also good to have someone appointed as your health advocate in case you can’t make decisions for yourself, we are the keepers of ourselves. We have to be the first line of defense in finding the right doctors and providing those on our medical team with the information they need to help us get the best care possible.

There are so really useful handouts in the book, though, that you can use to keep track of all of your health and medical information. You can find versions of these for free at www.realage.com.

*My friends have had it with me, but they’re going to have to hang in a little longer. They can no longer ask for book suggestions because all I read are patient narratives and books for my self-improvement “project.”

*****

(Roizen, Michael, and Mehmet Oz. You: The Smart Patient. New York: Free Press, 2006.)

Authenticity And Truth-Telling In Chronic Illness Blogging

While I had promised myself that I would stop reading patient narratives for awhile and try and tackle some “lighter” reading in my spare time, I haven’t been so successful. I’ve recently finished reading:

“Against Medical Advice” by James Patterson and Hal Friedman, “Turning White” by Lee Thomas, and “Unexpected Blessings” by Roxanne Black. (For more information see http://ificanhelp.com/, http://www.turningwhite.com/, and http://www.roxanneblack.com/, respectively).

A surprising commonality in all of these stories of illness is how the author’s decide to tell the(ir) stories. It isn’t only that the stories are each written in their own unique style. It’s that the very act of telling ones story is centrally important to the chronicle provided by the book.

All of these books are written very differently. “Against Medical Advice” is a book about a boy that has Tourette’s syndrome and severe Obsessive-Compulsive Disorder, and the triumphs and tragedies that occur in his life and the life of his family over many years of struggle.

“Turning White” is by Lee Thomas, a reporter for one of the local Detroit TV stations. He has vitiligo – the same autoimmune disease that Michael Jackson has – which causes an erasure of skin pigment. He tells the story of what it has been like to have such a visible disease and be in the public eye. He has not always been open about his illness, and continues to wear makeup on the air when reporting so that he won’t detract from the stories he is reporting on.

“Unexpected Blessings” is by and about a woman who has lupus, and who has done amazing advocacy work for people with all types of chronic illnesses. After enduring two kidney transplants, her story is still one of hope.

Reading all of these books, I laughed and cried. Despite their different stories, it was again reinforced to me the similarities in chronic illness experience, even when the diseases vary so greatly; a profound lack of control dominates.

The reality is that all of these books chronicle tales that, at least at some point in their telling, are pretty unbelievable. I don’t mean that I didn’t believe what I was reading, but there are such extreme situations that many chronic illness patients have had to endure. Taken together, it seems like these three people have experienced all the possible health issues that a person could ever imagine.

*****

I know that our situations are relative to ourselves. Lee Thomas mentioned in his book that he shouldn’t take his illness so seriously because unlike other chronically ill people he has met, his disease isn’t fatal. While that might be true, the one thing that I really resent is when chronic illness blogging becomes a competition. And what happens when someone does blow something out of proportion to the point of it being insulting (especially if they aren’t chronically ill)?

For example, a non-chronically ill friend blogged about arm pain, only to make an unnecessary insinuation about the impossibility of having arthritis in ones 20s. I’m not trying to downplay this person’s pain. But I do resent the fact that they can’t imagine that there are people living among them who might actually be dealing with an actual health crisis (because they are too obsessed with their own lives to look around them and actually get to know other people’s stories).

Why is it that every healthy Tom, Dick, or Harry amongst us feels no shame shouting it from the rooftops when they have a minor ache, pain, or cold, but the chronically ill among us only complain to each other. We worry that we will be seen as complainers, over-dramatizing our issues; that people will come to only see us for our illnesses. But isn’t that the way things are already? Either that, or they don’t see us at all.

The point of this story was to show that there are people out there who can’t imagine going through the things that we blog about. Heck we know, live, and breathe next to those people. So it isn’t all that shocking to wonder about how people think we are portraying ourselves and our stories.

Several people have made the comment to me: “27 vials of blood? Really?” I know, it’s pretty unbelievable, huh? If it hadn’t really happened to me, I never would have believed it myself. It does make me sad, though, to think that there are people that would doubt some of these details (or take advantage of the vulnerabilities that come with them). This experience has been harrowing enough. I could never imagine making things sound scarier than they actually are.

*****

I guess this post has sort of strayed from its intended target, which was truth telling. But my need to find myself makes me realize that I am more constructing the story as I go, rather than reporting on a story that has already happened. (After all, that is the great thing about blogging, right? Everything is happening in real time.) Truth be told, several recent posts have not been posted immediately. I have had to wait until the time felt right for me and I was further removed from the original events.

There seems to be a fine line between the truth and stories for the sake of telling stories. This post is in no way supposed to offend anyone. It is just meant to make us think about what stories get told, and which stories stretch the truth.

To me, honesty is the best policy and I pride myself on being open and honest with my readers. As a blogger, there is no better feeling than someone telling me that my blog has resonated with them (especially if they don’t share my illnesses). It would be horrible for people to commiserate and then later find out, Surprise! None of this is true.

The fact that this experience can have a positive spin (hopefully helping others) is something I am incredibly grateful for. I think we all have a flare for the dramatic (some of us also have flares for other things; bad pun, I know), and I usually try and admit when I know I’m writing at a time when I am particularly emotional about something and that I will probably look back later and see the situation differently. This doesn’t mean, though, that I’m trying to inflate the story for the sake of garnering attention. It just means that, that is my interpretation of my story.

I think we all start out blogging with altruistic motives. But at what point does it go too far in the other direction? Believe me, I’m guilty of these things, too. It’s just sometimes I have to wonder…

I’m working on writing a memoir and I’ve been working on an anthology. The one thing that I’m not satisfied with in the draft of the anthology is my own story. It feels very bland and detail oriented. The quality of writing just isn’t there. The verbal prowess of my blog just doesn’t carry over. All that aside, though, the real question is what the story is about. What parts of my story do I pick to tell? Where does it begin and end? What kind of persona do I want to give myself? Which people in my life do I want to include?

These are, or should be, the same questions we ask ourselves about what stories we publish on our blogs.
*****
(Black, Roxanne. Unexpected Blessings. New York: Avery, 2008.)

(Patterson, James, and Hal Friedman. Against Medical Advice. New York: Little, Brown, and Co., 2008.)

(Thomas, Lee. Turning White. Troy: Momentum Books, 2007.)

When Professional Oaths Mean Nothing And Male Power Means Everything

So, this may be a little off topic, but I have to vent. Today, my friend and I were in a *minor* car accident. The weather was horrible and we got stuck as we were trying to turn a corner. My friend was outside of the car trying to push it, while I was inside the car, when we were rear-ended.

We weren’t hurt, but my friend wanted to call the police so that they could take a report. The person who rear-ended us did not want my friend to call the police because she did not want *more* points on her license and was driving her friend’s car.

We waited quite awhile for a police officer to arrive. When he showed up, he was attitudinal and belligerent, and there was clearly an issue of power. The police officer let the other driver off because she was cute and upset, worried that her driving record would be ruined. A quintessential damsel in distress.

It ended up that while we were waiting for things to get figured out, two more cars crashed, luckily not into us. The police officer told us that we should leave the scene because the situation was dangerous, and that if we really wanted to file a report, we could go to the police station to do it.

So that’s what my friend and I did, feeling that the officer had acted inappropriately and not done his job. At the station, the power dynamic only worsened. The police officer there really wasn’t taking things seriously.

When we went to the police station to file a report, the police officer seemed very confused about what had happened, as were we. The officer there called the officer who had reported to the scene and kept saying things such as “supposedly” and “they claim.”

This took me back to two experiences in relation to my health that I would rather forget. The first is my first rheumatologist appointment, when I felt like a deer in headlights. I was in a total fog, like this can’t possibly be happening to me. Similarly, this whole situation is completely shocking. Here, we were victims being treated like we had done something wrong.

The second is when I got my medical records. My CT scan report read, “22-year old female complaining of right flank pain.” This “complaining” was seen completely as hearsay, suggesting that the pain was not really believed and the only way to substantiate it was via the CT scan, just as our report of the accident was seen as not true, because the responding officer hadn’t filed a report.

Finally, I told the officer at the station that he wasn’t listening to us, and that this wasn’t so much about the damage to the car, but how the situation was handled. Basically, mid-sentence, the officer got very forceful with his language and told me to “go take a seat.”

Need I remind you that I’m 4’11” and 90 pounds? My language wasn’t half as forceful as the officer’s was. I was simply trying to make a point, but of course, the officer was not going to admit that he or the responding officer were being blatantly sexist and that’s why they weren’t taking the situation seriously. And when the police officer at the station asked for my information, he clearly wasn’t listening and I had to repeat the information no less than three times.

Just like doctors, police officers and other public safety personnel are supposed to serve and protect. But this doesn’t always happen, which is clearly the case here. Plus it’s nearly as difficult to get a copy of a police report, as it is to get your medical records. And it’s your own personal information.

Police officers, upon receiving their diplomas take the following oath, “I will preserve the dignity and will respect the rights of all individuals […] I will discharge my duties with integrity and will promote understanding and conciliation […] I will act with honesty, courtesy and regard for the welfare of others, and will endeavor to develop the esprit de corps […].”

This is strikingly similar to the Hippocratic Oath taken by doctors. Observe:

“I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug […] Above all, I must not play at God […] I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick […] I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm […].”

It’s odd to connect two seemingly separate spheres of life, but I think this is an apt comparison, and a very unfortunate one.

I think in all of this, sometimes doctors and police officers act as if they are above the oaths they take, and if not that, that they are more powerful and worthy of respect than their patients and community members. Sometimes the need for respect and compassion takes a backseat to power and control, in times when the patient or community member needs it most.

I guess I thought that America in 2009 was a little bit more progressive than it is. Just as I don’t deserve to be treated like some dumb kid by my male rheumatologist, I don’t deserve to be treated like an overly emotional female by a cop with a giant male ego.

Not only is this situation disheartening, but it is emotionally draining, as well. The treatment by the officers was much more emotionally damaging than the accident itself. And that just isn’t right. If you can’t see it, it didn’t happen or doesn’t exist. Puts a whole new meaning on invisibility.

While I am thankful that no one involved in this mess was physically hurt, the demeaning treatment and feelings of powerlessness will last for a long time.

Picking Up The Pieces And Rebuilding Myself

“How many times can I break till I shatter?
Over the line can’t define what I’m after […]

Give me a break let me make my own pattern
All that it takes is some time but I’m shattered […]”

- “Shattered,” O.A.R.

*****

“I was bruised and battered

And I couldn’t tell what I felt

I was unrecognizable to myself

Saw my reflection in a window

I didn’t know my own face […]”

- “Streets of Philadelphia,” Bruce Springsteen

There has been a lot going on in my life lately. Between school and work, a crazy schedule that is no ones fault but my own, and everything else, I’m feeling completely overwhelmed. And something that I’ve realized is that while attempting to appear emotionally numb and unavailable, the truth is, I’m an emotionally needy person.

I’ve kind of had a major freak out, both physically and emotionally, and now I’m trying to pick myself up, and find the pieces missing from this puzzle that I call “me.” I guess you could say that right now my life is somewhat of a beautiful disaster.

I’ve also realized that in the pursuit of attempting to conquer the demons of my illnesses, I’ve lost myself. With illness came a profound sense of not knowing who I was. And while I was cognizant of that, the truth is that I never bothered to stop, go back, and find out who I actually am. And lately, and mistakenly, I have turned to others to validate who I am or convince me of who I am supposed to be.

I have been having people tell me things about myself that are 100% true, shockingly so. But it’s crazy that others have had to tell me those things in order for me to realize them. I know that sometimes we can only gain clarity by stepping outside of our own situation, but how do you step outside only to realize that there’s nothing on the inside that you recognize?

Self-discovery, or re-discovery, can only be done by me. No one else can do that for me. And it’s especially difficult to realize that at times, especially recently, my physical and emotional pain are indistinguishable. Illness brings up a lot of unresolved feelings, some that you don’t even recognize until much later when seemingly completely unrelated events bring them to the fore of your world.

What happens when you fill one void in your life, only to open one much bigger, that you never expected to find? I know that someday, and I hope it is very soon, I will find the answers that I’m looking for and I will be strong enough to take down the demons that are haunting me.

“Humpty Dumpty sat on a wall; / Humpty Dumpty had a great fall. / All the King’s horses / And all the King’s men / Couldn’t put Humpty together again!”

And just as Dorothy (Judy Garland) said in The Wizard of Oz (1939) upon her return to Kansas, “The next time I go looking for my heart’s desire, I won’t look any further than my own backyard; if it’s not there, then I never really lost it to begin with.”

I realize now that my physical health will not be okay until I rid myself of the self-blame that I am harboring. The feeling of being broken, damaged, and less than perfect, will continue to weigh me down unless I find a way to recognize that what has happened over the past several years of my life is no ones fault, including my own. To me, the scariest part of the last few weeks of my life has been feeling myself begin to flare, and literally, sending myself spiraling into a flare. Actually having control in the palm of my hand, and not being able to execute it. It’s difficult to have the knowledge that I can make myself feel better, and I don’t; that I should be taking care of myself, and that for many reasons, I haven’t been.

Right now I’m working on finding my way back to myself. And hopefully sometime soon I won’t feel quite so lost or alone as I do now. But this is something that I have to do… because life goes on whether I like it or not…

It appears that ten months after my diagnosis, I am no closer than I was then to accepting and dealing with the repercussions of these illnesses. But I can finally talk about them without crying, so that’s a step in the right direction…

Just consider this identity crisis number two million and one! Illness can be a real mind (you fill in the blank)...

Finding The Trigger (A.K.A. The Search For Answers)

This is Caramel several years ago. Got to love the hair!

I have been trying to write this post for a really long time. But it has been very difficult for me to try and put my thoughts and feelings on this subject into words.

I’ve tried to think back to what in my life possibly could have set off this crazy turn of health events. And the only thing I’ve come up with is that all of this really got going in early June two summers ago after my cat died.

I had gotten him for my eighth birthday, he was 14, and he was supposed to move with me into my first apartment.

If you’ve never seen a sick cat before, their demise is sort of like the trajectory of autoimmune diseases. You’re fine one second and the next you’re fighting just to breathe. I had noticed him getting thinner and then I noticed that he was breathing from his mouth. Cats just don’t do that. They don’t have to open their mouths to breathe.

I had been the one to make the choice. To decide that a cat who couldn’t breathe, whose lungs were full of fluid, who was only going to get worse, was not worth saving. Mainly, I knew that keeping Caramel alive would have been a completely selfish pursuit, for me and not for him. And I felt that for my family, it would be much more traumatic to come home one day and find him dead somewhere in the house than to do the only thing that seemed right to me at the time (however difficult it was). Honestly, I think it was the hardest decision I’ve ever had to make. And I don’t regret it. I think I just wish that I was an emotionally stronger person and that I wouldn’t have seen this singular event as so devastating.

And now here I am, everyday making the same decision about my own life. Do I take these pills today or let fate run its course? Do I take matters into my own hands and become my own fate? I’ve been doing a lot of soul searching lately, much of it difficult, and find myself yet again in a place where I really wish my life wasn’t complicated by illness. Sometimes there’s just too much to deal with at once.

I’ve heard of car accidents and severe physical traumas triggering autoimmune diseases. But my cat dying? That sounds kind of lame to me. That, that event would have caused all of this. And I know that this has all been building up inside of me for some time, long before the cat died and long before my episode of vertigo a few years ago.

But after that, I was never feeling quite like myself again.

In some ways, I know that this quest to pinpoint the exact moment I got sick is a futile pursuit. On the other hand, though, I’ve never been a person who is satisfied with not having answers to my questions.

But maybe simply by voicing and opening up about these concerns, I can finally put them to rest.

One issue that I’ve realized in my life is that I am, at some times, very good at minimizing the pain and hurt caused by people and events in my life, and thinking that I should move on before it’s time or far before I’m really able to. But sometimes I think we all need the encouragement of others to tell us that we aren’t crazy or weird for feeling the way we do about certain events in our lives.

That’s why, as I continue to process the death of my cousin, I realize that “survivor guilt” has come into play. It seems to me, however irrational I know that this is, that as his health deteriorated, mine got better. And that is something that is so incredibly hard for me to deal with.

Daily I search for answers to questions, about my life and the lives of others, that are quite possibly unanswerable…

Grand Rounds Is Up At “Not Totally Rad”

Be sure to check out this week’s edition of Grand Rounds at Not Totally Rad. The theme was anniversaries, so you will see my An (Un)Happy Anniversary post there. Be sure to read all of the other great posts, as well.