“Butterfly Girl”

I haven’t posted a song in a long time, but I think this one is so amazing. Plus, since the butterfly is the symbol of lupus, I thought some of you would appreciate it.

On a side note, I’ll be out of town for about a week, so look for updates when I get back!

“Butterfly Girl” by Jaylene Johnson:

“Do you only remember the way you used to be
Full of fear and doubt and insecurity
Taking things that people said to build a web around you
Thinking you’d be safe in that place

I know you’re frightened and your wings are frail
But summer’s here and you’ve outgrown your silky veil
The walls of your cocoon have left no room for breathing
So break free
Break free

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Don’t you know (that) you’re a precious miracle
Suffering transformed to something wonderful
All the things that had you bound have only made you stronger
So trust me and fly
Trust me and fly

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Don’t you know you’re beautiful
You’re beautiful
Don’t you know you’re beautiful”

From the album, “Finding Beautiful”

“The ‘L’ Word”

As much as I hate it and it pisses me off sometimes, sometimes lupus can be useful.

For instance, when I am wigging out because of a failed relationship that my parents don’t know about, it’s just the lupus flaring.

When I’m feeling too emotionally drained to get off the couch because I feel like I’ve failed at life and I don’t want to go out, I tell my friends it’s just the lupus flaring.

When I’ve taken on too many commitments and am exhausted and in pain, it’s just the lupus flaring.

And most of the time it’s true, the lupus is flaring.

But when I meet a guy who seems interested in me, I have to wonder, how long do I wait before I drop the bomb?

Bones, joints, and muscles ache like I’m eighty years old. That’s a real turn on, huh?

Sometimes I get nauseous and dizzy for no reason at all. And my mind goes blank and I can’t even remember your name. That’s a real turn on, isn’t it? A girl who can’t even remember your name…

So before we can talk about to LOVE, let’s talk about LUPUS…

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.)