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.

Fighting Old Battles And Waging New Wars

Wow! January has been a really up and down month for me.

Honestly, I think that the death of my cousin has really taken its toll. Once I was able to stop crying and actually go out in public, (which happened rather quickly because of school), I feel like there is still a lot of emotional rewiring going on in my head.

And I forced myself to work so that I could try and get my head back into the game. But I have so many projects in the works right now, it’s crazy.

I haven’t been sleeping well at all and am feeling quite anxious most of the time. I’m not going to sit here and lie about the fact that I’m an anxiety prone person. But the fact of the matter is that I’m feeling more anxious than I think I’ve ever felt before. I feel like it’s hard to breathe sometimes, like the walls are closing in on me.

And I can’t explain exactly why this is. I’ve been in relatively good health the past few months. And there are a lot of things that are going well in my life; a lot of exciting things coming up – (such as) trying to find a publisher for the anthology I’ve been working on, trying to write a memoir, trying to create awareness about chronic illness on the U of M campus, etc. So why do I feel so unsettled?

Even just the thought of my schedule filling up and more and more hours of my time being spoken for, makes me feel kind of nauseous. On the one hand, I don’t want to live in fear and never do anything because of the worry of not feeling well. On the other hand, though, I have to prepare myself for (at least) the possibility that my body will crash again, even though I don’t know where or when that will happen. Because I do think it is not a matter of “if,” but “when.”

And it’s stupid of me to assume that I can do everything I once could, or that I can even do everything that everyone thinks I am supposed to be doing now. For instance, I teach for four hours Monday afternoons. The first class was brief because it was basically introductions and going over the syllabus. We had the second week off for MLK Day. So Monday was the first time I had really taught, and I basically went for the entire four hours straight through. It’s only logical that, that kind of work tired me out.

I’ve noticed that some of the symptoms that I dealt with at the very beginning of all this, are coming back. Despite this, I keep trying to see how far I can push the envelope. And I know this is supremely stupid on my part, but I don’t know any other way to be. When I’m being super productive, I get this incredible adrenaline rush, but then I don’t know how to stop, how to cut myself off from overextending myself.

Obviously, this is nothing new for me. But lately my life feels very unbalanced, like the ground is shifting under me, but I’m not moving. Or maybe I am. I can’t say what this “existential crisis” is truly about. Lately, I’ve been wondering if I’ve ever really been a happy person. I think so, but I sort of wonder. What the heck is going on with me?

Part of the problem is that a large component of getting through academia is the fact that you have to play (and win) the “publish or perish” game. So when I have professors asking me to work on projects, how can I say no? Inevitably, this means that my own work often gets put on hold, especially creative things that I’m trying to work on. Lately I just feel this profound sense of urgency that there’s so much to do and not enough time to do it. This is something I find rather distressing.

Invisibility comes into play again here. I think that I’d have less of a hard time saying no if it was obvious that I was sick. But in the absence of horns, tails, or flashing lights, it’s hard to explain to others. And some people do understand. My advisor always counters any offers I make to help by asking if it will be overextending myself (as if this is something I would admit, anyway), but at least I know she’s thinking about it. And the professor I worked for over the summer, who I’ve continued to work with, has been really good about it, too. It’s just the people that are newer in my life that are difficult to deal with (and they are many, even though some have been great).

It seems that all I’m good for lately is questioning myself.

In some ways, all of this makes me realize that maybe Doctor C was right in suggesting time off from school. If I don’t stop working, obviously, I’m not going to stop working. But it’s not as if I can just jump ship right now or go spend some time on a deserted island somewhere. But I feel like that’s sort of what I need. I feel like the project I really should be working on is myself. There are definitely some things about this self that need improving…

As I’ve said before, I think dealing with chronic is as much mental as it is physical. And sometimes, the mind and the body aren’t in sync in the way that they’re feeling.

I had blood work done last week, which happens routinely because I am on immunosuppressive drugs. I have gone through this seemingly innocuous task more times in the past year than I care to remember, never expecting anything to go wrong. And yesterday, I got a call from my rheum’s office. White blood count low (as in abnormally low based on my previous tests). Repeat blood work next week (instead of in three months). This call took me back to my first phone conversation with my rheum, when he called to tell me all of the tests that had come back abnormal, when I first started going to him. Obviously, my white blood count could be low for any number of reasons. This could merely be a fluke. Or it could be something else? (This does wonders for my already anxious self, by the way!)

I guess sometimes I just wish that illness wasn’t a factor in everything I do, but it is, and I have to get used to it.

Grand Rounds: Chronic Babe Style

Be sure to check out this week’s awesome edition of Grand Rounds at Chronic Babe, which focuses on (the always timely) issue of women’s health.

Along with myself, some of my favorite chronically ill bloggers are represented, including posts from Being Chronically Ill Is A Pill, Rhymes With Migraine, A Chronic Dose, and Six Until Me.

Kindred Spirits And Not So Kindred Ones: Chronic Illness Is A “Strange Bedfellow”

Chronic illness, especially if you are relatively new to it, forces a person to do a lot of soul searching to find out what you really want and need in your life. Sometimes this soul searching also leads to thinking about what you want and need from other people, as well…

My sister and I don’t always get along. Especially when I was still living at home, we were always competing for everyone’s attention. And honestly, in an attention competition, my sister wins hands down.

But ever since I moved out, we have become much closer. Over break, she and I were up late, talking and laughing, just like sisters who are close in age do. But my sister and I are nearly 10 years apart, and she is quickly becoming bigger and better than me (even though she’s the younger one).

Somehow, our conversation got onto the subject of boys/men, and she asked me what qualities I thought the ideal man for her would need to have (keep in mind that she’s 14). I thought about it, told her what I thought, and then we moved on to me…

And my sister said something like, he’s got to be able to handle your diseases. I haven’t talked to my sister that much about lupus or rheumatoid arthritis, so her comment sort of took me by surprise. My response was something like, are you trying to be daft? You make me sound crazy (or like I have an STD)…

But she was being serious, and she’s right.

Something I haven’t really shared with readers of this blog is information about my personal life. And I only do it now because it relates to chronic illness.

But don’t get too excited. It’s not that exciting, I promise!

I’ve been dating here and there (read rather sparsely) recently. There hasn’t been anything serious, but it has really helped me realize the kind of person that I need and want in my life.

I went out on one date with a guy*. The date was fine, but there’s not much more to be said about it. When asked if I wanted to see the guy again, I politely said no.

While I felt like the guy wasn’t my type, and that overall, the date lacked chemistry, I felt bad. Maybe I had been too snap in my judgments. But one comment he made resonated with me. He was talking about his work (he’s not a doctor or in the medical profession) and mentioned that whenever he has to get blood drawn, he has to take anxiety medication in order to calm his nerves. The fear of needles, I completely understand – I used to have it myself (minus the need for drugs, although I do recall some handholding – 27 vials at once certainly makes that fear go away real quick) – but the reality is that someone that I have a relationship with is going to need to be able to handle a variety of health related issues.

And disclosing the fact that you’re chronically ill isn’t exactly first date material!

(I haven’t actually figured out the logistics of disclosure in a romantic relationship that lasts more than one date. But I’ll cross that bridge when I come to it…)

And I know that it’s going to be difficult to find someone who wants to be in a committed, long-term relationship with someone who is chronically ill. (I know that person is out there, I just haven’t found him yet) People go into relationships knowing that the possibility of illness may arise at some point. But it’s going to take a certain kind of person to be able to go into a relationship where that cloud is already looming.

So in many ways, my sister’s comment is spot on because accepting (and even loving) me with all that comes with me, good and bad, (sickness and health), is really the best that I (or anyone) can hope for.

So, while this particular guy and I did not connect, I feel a connection with my sister that I’ve never felt before, that only sisters have. We are kindred spirits in a way in which even best friends don’t have. I’ve often said to my sister of others, she’s my friend, but she’s not my sister.

So it’s nice to know that in a world where there are doctors and men to drive me crazy, and all of the other people that may walk in and out of my life, that there are people that really do get me. And it’s really nice, now more than ever, to know this, given the fact that I recently lost a member of my in-person support system (see Unfortunate News and Making Sense Of The Senseless).

I do still feel bad about turning the guy down for a second date, as I would not have wanted to be in that seat if the situation was reversed. However, I think it’s important to know what you need and want from a relationship, and also, be willing to put the time and effort into it if you think it’s going to work; and to know when to throw in the towel when it’s not.

Chronic illness isn’t an easy thing to deal with, and it can have a wide-ranging impact. So I can’t begrudge a guy who can’t handle it, it’s just that’s not what I need in my life. I need someone who is going to stand by me and be there for me. And quite frankly, there have been several people in my life giving me mixed signals, and honestly, I don’t have time and energy to pursue nothing, so it’s good to be honest and up front about what you want and what you don’t.

I tried unsuccessfully and for too long to deny the reality of my illnesses and their consequences. But in order to move my life forward, and make it as productive as possible, I have to know and admit to others that things have to be different. And that includes my relationships, romantic or otherwise.

I guess, illness or not, a girl’s got to do what a girl’s got to do. Am I right?

Sometimes the best self-care is knowing who or what is best for ourselves.

* This post is in no way meant to embarrass this person, especially considering that the details have been purposely kept vague, I only met him once myself, and he probably will never read this blog.

An (Un)Happy Anniversary

“I hope you know, I hope you know

That this has nothing to do with you

It’s personal, myself and I

We’ve got some straightenin’ out to do […]

The path that I’m walking

I must go alone

I must take the baby steps ‘til I’m full grown, full grown”

- Fergie, “Big Girls Don’t Cry”

Ten days ago marked the 0ne-year “anniversary” of my “seeing” Doctor C. It’s pretty funny that this is my longest relationship with a member of the opposite sex. How sad is that?

(I’ve tried to keep my doctors gender neutral, but I’m sure many of you have figured it out already)

In some ways, I feel like my reliance on Doctor C, over the summer, for instance, was because of my own insecurities. I guess I wasn’t so much worried about being able to take care of myself, but rather, I was worried that I couldn’t, and wasn’t, managing my lupus and RA symptoms.

In retrospect, I think that being cut loose was in some ways liberating because it forced me to take control of the things that I could be in control of and wasn’t, and resigned myself to the fact that there are and were some things that I just simply don’t, and maybe never will, have control over.

Since my appointment in November, it has been my longest stint of feeling well most of the time, and the longest I’ve gone without seeing a doctor, since all of this started. It’s nice to (finally) have tangible proof that I am making strides, no matter how slowly or awkwardly.

It’s funny, though, in an ironic kind of way, to think back to my life a year ago. Before then, I never knew it was possible to extract 27 vials of blood from a 90-something pound person. I never really knew what lupus was, or that rheumatoid arthritis wasn’t the kind reserved only for older people. I didn’t know that one day the body could be fine and the next it could be going crazy.

I’ve come to think of it something like this:

My body was like a train speeding down the track. Suddenly, the track forks. There are two ways to go. A simple decision, right? Not when you can’t see what the other side of the fork holds. So one way leads to a smooth track so the train can keep speeding along. The other leads to a track that is broken, an unfinished track that leads the train off a cliff. And what switch does my body pick to flip?

I keep thinking a lot about forgiveness, too. I’ve come to realize that Doctor C really does have my best interest at heart. And although the diagnosis giver, he is not responsible for the diagnosis. But there is, then, the lingering question of who is. And for some reason, I can’t seem to forgive myself. I can’t get off the fact that maybe there is something I could have done to prevent all of this from happening…

I think back to my job writing for a newspaper the summers before my junior and senior years of undergrad. I worked at least 80 hours a week because I didn’t know any differently and didn’t think to care that maybe such a work ethic was causing permanent damage to my body. And a pretty nasty habit that I gained from college was not eating when I was stressed. Most people who have stress related eating issues binge when they’re feeling overwhelmed. I stopped eating. Most people worry about gaining weight their freshman year (“the freshman 15”). I lost ten pounds that I really didn’t have to lose. So I have to wonder if any or all of these things contributed to my current health status? I probably will never know for sure.

In some ways, this whole lupus thing makes sense. But in other ways, I still shake my head when uttering the words. How is this really happening? There is definitely still a part of me that wonders what might have been without having lupus and rheumatoid arthritis in my life. But even as the thought crosses my mind, it is overshadowed by the fact that I will never know the answer to that, because I will never know a time when I don’t have these illnesses in my life.

So, as I reflect on this moment, I also try to stick to my New Years resolution and not ruminate too much about the past. I’d like to think that both good and bad have come from being chronically ill.

It’s strange because I left my last appointment with Doctor C incredibly frustrated and angry. But since then, I’ve started feeling a lot better. Is that a sign? What does that mean? I’ve talked often about considering seeking out a new rheumatologist. But as many of you know, I’m sort of a creature of habit who doesn’t deal well with change. So at the moment, I have no immediate plans to switch doctors.

The truth is, I had written Doctor C off a long time ago. And I shouldn’t have. Because the reality is that while Doctor C was doing the best job that could be done, I was the one who was unrealistic about things. It’s crazy to think that you can be healthy one minute and then the next you are never able to feel that way again. Maybe the real truth, though, is that both Doctor C and I had unrealistic expectations. It’s hard for anyone, especially someone to has spent their life with the goal of helping and healing, to see health go out the window, especially for a young person.

As I’ve talked about before, the doctor-patient relationship is a hierarchical one, but it doesn’t have to be. Just as our doctors need to put themselves in our positions, we also need to put ourselves in their positions. And when you look at things from that perspective, you come to realize that chronic illness isn’t easy for anyone involved. I think both Doctor C and I were misinformed in our thinking that things would be perfect. Things are fine, much better than last year at this time, but there are still (and probably will always be) issues that have to be dealt with.

So here’s to you Doctor C, and many more years together (maybe).

Breaking My Silence (And Possibly Other Things)

Okay, so the “other things” part is only half serious. Yesterday, I fell in my apartment. It was one of those times that I was glad I was alone – because as of late, I’m feeling a little bummed about being by myself most of the time – but this was one of those moments where you look around to make sure no one saw, even though there was nobody else there. Although I’m fairly sure the people that live below me must have heard it.

This is not a glamorous story. I basically missed my rolling desk chair, lost my balance, and fell sideways. And of course, I had to land on my right hip and elbow, the body parts that give me the most constant and consistent trouble. And this makes me not believe that “the bigger they are, the harder they fall,” because I fell pretty darn hard.

Floor meet Leslie. Leslie meet floor. Hello…floor.

Come to think of it, my hair dryer fell off my bathroom shelf the other morning, and smacked my left wrist. Maybe I should just stay on the couch. That seems to be the safest place for me lately.

Other than a little bit of bruising, and a fairly big bruise to my ego, I’m fine, although I’ve been feeling a bit off these past few days (both emotionally and physically).

The past few weeks have been difficult, to say the least. I had started writing a few posts that I had intended to finish, but then my cousin died, and everything else took a backseat. I haven’t really had time to adjust to the new semester, and it has been difficult to reflect on some of the topics that I wanted to write about.

Walking to campus for the first time since break really tired me out. I really felt out of shape. My ankle was sort of swollen by the time I got home, which has never happened before. And the first day of school, I woke up and felt “wasted.” And if you have lupus, you know exactly what I’m talking about. My head just didn’t feel right, like I’d never slept, and I felt vaguely hungover.

On the other hand, though, the last few times I’ve exercised, it has actually felt energizing, rather than energy depleting for the first time in over a year.

Given the physical (lack of sleep) and emotional toll that the past few weeks have taken, I am surprised that I haven’t flared.

That’s all I have…for now…

Making Sense Of The Senseless: Things Left Undone

First and foremost, I would like to thank everyone for your words of encouragement and support during this difficult time. They are appreciated more than words can say.

*****

Several months ago, I had addressed an envelope to the wife of my cousin, preparing to send her a card of encouragement. I couldn’t imagine where she drew the strength to care for a sick husband and four young children. The day I went to send the card, my parents informed me that my cousin was doing badly, so I opted not to send it. The card had been in a drawer, and I had yet to write and send it. The morning my cousin died, before I had been informed of his passing, I finally wrote the card to his wife. But then my day got crazy and I wasn’t able to send it.

At first, I felt relieved that my lame platitudes, at what was really an awful time, had not been received. I felt that nothing I could say or do in such a time of uncertainty was enough. But as I started reading “When Bad Things Happen To Good People” by Harold Kushner, I realized that maybe such a card, telling my cousin what a strong and amazing person I think she is, is exactly what she needed.

In such times of despair and anguish, what is it that we really need to help us through? As much as I am broken up about the death of my cousin, I can only imagine the pain that his wife and children are feeling.

I don’t really feel like I’ve been endowed with the capacity to cope with something like this. I haven’t gotten dressed in days, and if I’ve had to, it has been with minimal effort.

To quote myself in an e-mail to a blogger friend, I wrote, “It’s funny how when you’re ill, you think you know all the right things to say – and then life presents a situation where you are powerless to make it better. It’s odd, too, because right now, lupus and RA don’t seem so bad. That’s pretty sick, isn’t it?”

****

A few years ago, after the death of a high school classmate, my mom suggested that I read, “When Bad Things Happen To Good People.” I refused. When I got sick, my mom found a way to sneak this book into my apartment. But it wasn’t until I was trying to process my grief over the death of my cousin that I pulled the book from my shelf to read.

As I peeled back the cover, my hands were shaking. Can a book induce fear just at the sight of it? Maybe it’s what the book contains that scares me – answers to a question that seems unanswerable. I don’t want to ask why because I don’t think that there is any answer that will be acceptable.

*****

What has bothered me most about the death of my cousin is the suffering he went through, which ended up having the same outcome as if he would have refused treatment altogether. The other thing that gets me is the effect his death has on those he has left behind. So many good people… so much sadness… and no one deserved any of it.

When people in our lives, or ourselves, are senselessly struck down, it’s easy to question.

When I got sick, I turned my back on religion, partly out of anger, but mostly out of confusion. So you can understand my squeamishness at reading a book authored by a rabbi.

*****

I would say that this is really the third (major) time in my life that I have had to deal with the passing of a loved one. When I was seven, my grandfather, my mother’s father, died unexpectedly. Just the week before, his doctor had given him a clean bill of health, and guaranteed him 20 more years of life. Just one week later, he was gone.

Before that, I don’t think I really understood death. My notions of it were confused and it was a harsh reality to face. Then, when one of my high school classmates died my senior year of undergrad, I had a really difficult time dealing with it. Again, there were so many things I didn’t understand. While we hadn’t spoken or seen each other since our graduation from high school four years earlier, I remembered her being one of those people who transcended groups. She literally was a friend to everyone. I was in her group for the fashion show for marketing class, and I remembered her bubbly personality. She died just a few days short of her 21st birthday. Why would she never get to celebrate that milestone? I began to think how unfair it was, all the opportunities in life she would miss. And of course, I wondered why. And now, as my life is touched, again, by the loss of a loved one, I wonder why the world can be so cruel.

*****

Because Jewish law requires burial as soon as possible after a person dies, my cousin died early Wednesday morning and the funeral was held on Thursday. There was no way for me to arrange a ride to get home in time for it, but I wanted to.

I ended up going home for a few short hours on Sunday in order to pay my respects to his family. I was able to hold it together while talking to his mother and three brothers, but when I got to talk to his wife, I lost it.

There I was, in my cousin’s time of grieving, and she was comforting me, telling me that we would find the strength to get through this.

And I can only imagine that when friends and family leave, and my cousin’s children go back to school, that the realization of his death will finally hit my cousin’s wife. And I can only hope that she will find the strength she needs from those closest to her.

*****

One line from “When Bad Things Happen To Good People” that really resonated with me was something early on: “[…] when we cry out to G[-]d in our anguish, G[-]d responds by sending us people” (xi).

As I have said often, illness (or any other difficult life passage) is a great way to weed out those who are not true friends. However, it is also a way of discovering who will be there no matter what.

“But, of course, we cannot chose. We can only try to cope [….] [and] the really important question is not why bad things happen, but where we will find the resources to cope when they do happen” (xiii, xiv).

And I think this is true of this blog. While I think we all attempt to answer the “why” question at one time or another, we are much more focused on what we can do to help ourselves and others cope with experiences that we have already had.

As I think about the fact that I have not had my diagnosis for a year, or that I have not been on all of my current medications for a year, I realize that as time goes on, the “why” piece matters less and less. Because it isn’t why we have to deal with the cards we’re dealt, but how we deal with the cards that is what really matters.

*****

Beyond sadness inevitably lies fear. If a wonderful man, an adoring husband and father, a successful lawyer, one of kindest people you would ever want to meet, is taken away so tragically, it makes us realize that it can happen to anyone at any time.

In some ways, I feel like life is always about the cards we don’t send or the things we don’t say or do, until we realize that the window of opportunity has closed and we are no longer able to do them.

Unlike most of us, my cousin and his family had no financial strings. They had the power to seek out any doctor in the entire world. And still, there was nothing that anyone could do to change the situation. My cousin didn’t die from cancer. He died from radiation-induced dementia, a condition that can debilitate someone who has had high levels of radiation to their brain, depriving it of oxygen.

It really makes me think – and wonder – about whether the treatments we are presented with by our own doctors are really worth it. Do we really understand the risks? I think we understand percentages, but I don’t think we ever stop to consider that we might just be that 1% who is hurt more by the treatment than the actual disease.

But I don’t think drugs and treatment are an absolute. I think that at some level, in the back of our minds, we all have a point that we are willing to go to. And the one thing I can say about this situation is that I don’t think my cousin would have wanted to continue in the state he was in for an indefinite amount of time. But that doesn’t mean that he deserved cancer and to die, to never see his children grow up, to never live another day on this planet.

*****

“Innocent people do suffer misfortunes in this life. Things happen to them far worse than they deserve – they lose their jobs, they get sick, their children suffer or make them suffer. But when it happens, it does not represent G[-]d punishing them for something they did wrong. The misfortunes do not come from G[-]d at all” (60).

In opposition to everything most of us have been taught, Kushner suggests that “sometimes there is no reason,” that even G[-]d is sometimes powerless to change situations (63). He goes on to suggest that when a plane crashes, we like to think that all of those people were cosmically connected somehow, and that those who were supposed to be on the plane and missed it by chance, were somehow better than those who were on the plane, but that this line of reasoning is completely untrue.

In some ways this is reassuring – that G[-]d does not will the tragedies of the world on people. On the other hand, though, if G[-]d is not responsible than who or what is?

Kushner further suggests that the events in our lives that anger and sadden us are the same events that anger and sadden G-d because “G[-]d finished His work of creating eons ago and left the rest to us” (75).

In some ways, it makes me feel better to know that all of the headlines I read each day with people killed here and there are random acts of violence. But if there is nothing controlling the universe, then how do we stop it from spinning out of control? Maybe the answer is that we don’t.

Lupus, cancer, and all of the other diseases in the world do not have consciences. They don’t pick their victims based on the moral worth of that person. They happen because the genetic conditions are ripe for them to occur. It’s not more complicated than that, although somehow, even understanding this explanation, we manage to complicate things by searching for answers to questions that no one can provide the answers to.

*****

While Kushner doesn’t always tell us what we want to hear, the book is written in a gentle, almost soothing way. And it becomes obvious that the reason for this is because he has suffered, as well.

In some ways, Kushner’s conclusions are found wanting. We try to find meaning in situations where truly no meaning exists. We try to find words and actions for situations where our capacities as humans fail us. We are ever caught up in a cycle of suffering and coping, and we aren’t always good at doing either.

There are two lessons that I take from “When Bad Things Happen To Good People”. They aren’t as earth shattering as I had hoped they would be, but they do give me some sense of hope. The first is that sometimes, no matter how hard we try, we are unable to make sense of things. Sometimes there is no reason. But in the face of suffering, we are lucky if we have people around us to support us.

And maybe we get to see who people really are when they are faced with adversity. I feel like I have such a unique bond to my cousin and his wife because in their adversity, they let me in. They let me see them at their worst, and I think I actually got to see the best in them.
*****
(Kushner, Harold S. When Bad Things Happen To Good People. New York: Schoken Books, 1981.)

Unfortunate News

I found out tonight that one of my cousins, who was diagnosed with a brain tumor several years ago, passed away. He would come to Ann Arbor for treatment, so nearly every time, he and his wife would take me out to lunch. Here, while their family was struggling with illness, they were making sure that I was taken care of. And as I embarked on my own illness journey, my cousins were there to listen to and support me, despite having their own issues.

I became really close with them and felt like my cousin and I were partners in illness, which is not the kind of bond that you can have with just anyone.

I am having difficulty processing this now, so I probably will not be blogging for some time.

Sometimes life just does not make any sense...

(Click here for more information)

"Why Does Distance Make Us Wise?" A Lesson In Letting Go

I have never really been “into” New Years resolutions, not because I can’t follow through on them, but because I usually decide to change things about myself that are not really amenable to change. But this year, I’m in the mood to make a resolution that I make a concentrated effort at following through on – because I can.

I’m at a crossroads in my life where I can either take a leap of faith or not. It’s like when you’re a kid and you’re hanging from the monkey bars, too afraid to reach for the next bar, and too afraid to let go of the bar and land on the ground. So you’re just… stuck…

So whether its letting go of people in my life who I no longer have the things in common with that held us together, being okay with making choices in my life that others don’t agree with, or letting new people in, I have to follow my own intuition more, listen to others less, and know when my energy is better spent elsewhere and on other things.

That’s where I feel my life is right now. And I think I have a pretty good idea about why I am where I am.

So my resolution is to become better at letting go of things. I’m an over-analyzer; I analyze, re-analyze, and analyze some more. I’m not good at letting go of people or things. It’s a pretty non-discriminating quality.

But I have been thinking a lot about the people that have hurt me lately and the fact that I give them far more energy than they deserve. And I have been evaluating the friendships and relationships in my life that are truly meant to last.

And because there is always a lesson in “Sex and the City,” here is Carrie Bradshaw’s take on letting go:

“Maybe the past is like an anchor holding us back. Maybe you have to let go of who you were, to become who you will be.”

The past is just that – it’s the past. It’s done, it’s over with, and it’s time to move on. And while I know that, that is much easier said than done, I’m at a point in my life where I can no longer afford to ruminate about past slights and hurts, which I have done to others and others have done to me, decisions and indecisions, and all of the other things that are preventing me from moving forward in my life. I need to concentrate on the future. My future. And hopefully 2009 is the beginning of something great!

Wishing everyone a happy and (as) healthy (as possible) 2009. Sorry I’ve been a delinquent blogger these past few weeks. The holidays, getting together with family and friends, a slow Internet connection, and a lot of reading pretty much did me in. But it’s a new year, and I promise to be more consistent with blogging (and my medication schedule)!

Happy Holidays Everyone!

Just wanted to wish everyone a very happy and *healthy* holiday season and a wonderful 2009! Posts will resume as soon as I am back from break!

How Do You Measure A Year?

“525,600 minutes
525,000
moments so dear.
525,600 minutes
How do you measure, measure a year?
In daylights, in sunsets, in midnights, in cups of coffee.
In inches, in miles, in laughter, in strife.
In 525,600 minutes
How do you measure
a year in the life?”

When you’re chronically ill, time can play tricks on you. I was thinking yesterday about how good I’ve been feeling and how long it has been since my last rheum appointment, only to realize that it was only a month ago to the day of my last visit. Not so long ago after all. Especially since I’ve been known to plateau in the feeling good department after about a month.

Being chronically ill also makes you mark milestones differently. As I prepared to celebrate Thanksgiving with my family, I couldn’t help but think back to Thanksgiving 2007. I had my CT scan the night I was going home for Thanksgiving.

And now, as I prepare to head home for the holidays, I think back to last year, and my impending (first) rheum appointment at the beginning of January, and all of the unknowns that lay ahead of me at that point in time.

And maybe that’s why I’m not really in the holiday spirit this year. Lately, everything feels like too much work. But maybe it’s more about the fact that things are different now. The moments in my life that signify the holidays are no longer things associated with the holidays, but things associated with illness.

I remember in those “first months,” especially October 2007 through January 2008, standing in the shower (most mornings, when I was feeling well enough), hugging myself and crying. Like a little girl who lost her favorite doll, what seems like the most important thing in the world, I was worried that I was losing… my life.

Physically and emotionally wounded and in pain, I would stand there, waiting for a sign that things would get better or worse. Either way, I wanted and needed to know.

Looking back now, what seemed like the worst then, undoubtedly wasn’t and still isn’t the worst that life has to offer me. But I think about everything that I’ve been through in the past year, with all of the ups and downs, all of the back and forth, all of this:

30+ doctors appointments

40 prescriptions

2,200+ pills

$14,100+ of tests, and blood work

(Thank goodness for insurance, although that figure doesn’t include appointment and prescription co-pays!)

(If this were a credit card commercial, I think the word “priceless” would come after all those numbers. But priceless what?)

(Yes, I am this crazy and anal that I’ve kept track of all of this stuff to the point that these numbers were practically at my fingertips)

And it’s honestly hard for me to believe that all of this is real and happening to me.

I guess my penchant for keeping all of the prescription bottles is that I want to have something to show for the trials and tribulations of the last year and a half. Aside from the emotional scars, there has to be something tangible to take away from this.

I do think that this has been a time of immense personal growth, but it seems like a big price to pay for wisdom. I guess that’s life.

“525,600 minutes-
How do you measure the life
of a woman or a man?
In truth that she learned,
or in times that he cried.
In bridges he burned,
or the way that she died”

So, how do you measure a year?

*****
Larson, Jonathan. “Seasons of Love.” Rent. Warner Brothers Records, 2005.

Grand Rounds: The Year's Best Posts

Check out this week’s edition of Grand Rounds over at Laurie Edwards’ blog A Chronic Dose. Laurie presents her picks for the best health-related blog posts of 2008. (And mine is one of them!!!)

GCTM’s Top 13 Best Posts of 2008

When I read Laurie Edwards’s concept for Grand Rounds, I really wanted to submit something. But where to begin? I’ve only been blogging since April, but there are so many posts to pick from.

So, I decided to jump in headfirst and re-read most of the posts that I have written. It was tough deciding on these posts, especially the top one, but here are the top 13 (because that’s how many I picked) best posts:

13. "Coming Out"
12. Why Does Hurt, Hurt?
11. The Secrets We Keep, The Lies We Tell
10. Unloading
9. Would You Rather Be A good, Sick Person, Or A Healthy, Bad Person?
8. Making The Choice And Facing The Consequences
7. Left Of Center
6. “Illness As Metaphor” For Life
5. Forced Disclosure And The Battle Within
4. To Heck With "Normal"
3. The Hospital As “Pick-Up Joint”
2. How Do You Get Your Doctors To Talk To Each Other?

And the winner is…

1. “First Do No Harm”

It’s funny (and coincidental) that so many of these posts turned out to be ones that were submitted for Grand Rounds (at least I’m consistent) and that the number one post happens to have “first” in the title.

I’ve learned a lot about others around me and myself over the last eight months that I’ve been blogging. But it was really interesting to go back and re-read many of my posts, to see if I agreed with everything that I said, and that the thoughts and feelings still apply today. For the most part, they do.

There are common issues throughout the posts, some more obvious than others. I talk about the obvious things; school, doctor’s appointments, etc. But I also talk a lot about desperately wanting to be healthy again, and what it feels like, physically and emotionally, to be ill (abnormal).

I also notice that there is a different tone to my posts. The older ones are much more tentative. I’m clearly unsure if I have the right to own up to my illnesses (or if I even want to), to consider myself an “expert” (as in I have firsthand experience) on the topic of chronic illness.

I’m sort of amazed at my candidness. But there were, and still are, times when this blog is all I have to turn to. Sometimes I can’t believe how coherent my thoughts come across. At other times, I can’t believe how abstract and nonsensical I can be.

I feel like I’ve come a long way in the past eight months and I have many of the people I’ve met through blogging to thank for that. I won’t name names here, but you all know who you are and how much you are appreciated. If it weren’t for the readers of this blog, there wouldn’t even be a favorite post, let alone a list of 13 of them.

Comment on which post is your favorite, and feel free to mention one that isn’t on my list!

Tis The Season For Retail Therapy

Let’s admit that we all have weaknesses - chocolate, shopping, others that can’t be mentioned here...

Lately, I’ve found comfort in retail therapy. If I’m feeling really upset, I’ll just hop online and buy something to make myself feel better. The best part of it is that I can order things from the comfort of my apartment (the comfort of my own chair, really). Even though it’s delayed gratification, there is an immense amount of anticipation waiting for said purchases to arrive at my door (give me a little credit – I do have some self control).

I am ashamed to say that on occasion, however, I have forgotten about purchases and only remember them once my credit card bill comes. My spending isn’t out of control, but the lack of recall bothers me.

Anyway, I have long lamented the idea of clothes shopping. But shoes are another thing entirely. And lately, my purchases have been of the more practical (but fun) nature. Observe:

My awesome rain boots!

My puffy, pink boots. They kind of remind me of Wonder Woman’s boots, but lately, I need all the girl power I can get!


And finally… My new, gray Kangaroos. I have two other pairs of these in wild colors, but I needed a more everyday, neutral pair.

I have small feet and it’s hard for me to buy shoes, so these three pairs are a major jackpot.

I am aware that this is not the best coping skill – but I’m trying to limit the rest of my spending to holiday gifts. Retail therapy for me and a gift for someone else. Does it get any better than that?

There may be some truth to Paolo Nutini’s song “New Shoes,” afterall. “Hey, I put some new shoes on/And suddenly everything is right.” Maybe?