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.