Friday, December 26, 2008
Saturday, December 20, 2008
moments so dear.
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?”
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
$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.
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”
Larson, Jonathan. “Seasons of Love.” Rent. Warner Brothers Records, 2005.
Tuesday, December 16, 2008
Sunday, December 14, 2008
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
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!
Thursday, December 11, 2008
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:
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?
Tuesday, December 9, 2008
While the personal story of Abercrombie that is weaved throughout the book focuses on breast cancer, I would recommend this book to a general audience, specifically those dealing with chronic illness.
The book chronicles a writing group that Abercrombie created, but what I love about it is that she provides writing exercises about how to deal with, talk about, and cope with illness.
She suggests “writing as therapy” (xii), as “a tool for finding voice in a situation that leaves you feeling as if you have no control, no voice” (xii). She also suggests writing, in some ways, as an escape from the goings on of the present moment: “If I keep writing, I won’t have to think about why I’m here” (1).
For instance, one of the many writing exercises she suggests is, “Write about people’s reactions when you tell them the truth. Write about the consequences of reaching out – or not reaching out” (24). Disclosure. We can all relate to this.
I love the way Abercrombie conceptualizes of illness and the way in which she writes about her own ordeal. She says, “The hardest thing is to leave yourself, the innocent, healthy you that never before had to face her own mortality, at the border. That old relationship with your body, careless but friendly, taken for granted, suddenly ends. Your body becomes enemy territory” (39).
Of why it’s important to write your illness story, Abercrombie suggests having “Faith that there is meaning in each breath you take and in each small detail of your life and that this is worth writing about. Faith that others will find comfort and connection in your story” (145).
I realized through reading this book that blogging is truly a useful exercise for those of us who are chronically ill because it serves a dual purpose. It’s not just the people we meet along the way who offer comfort and support, but it is also our own abilities to tell our stories and put into words our deepest thoughts and feelings and being willing to share those with others – although writing and not sharing is fine, too!
This book has certainly helped me conceptualize of my illnesses in new and different ways, sometimes abstractly, sometimes concretely. And I have tried to find other books like this one, but I haven’t been able to. I’m also trying to sort through my own writing that has come from the suggestions in this book. Maybe I’ll post something when I get my thoughts together.
(Abercrombie, Barbara. Writing Out The Storm. New York: St. Martin’s Griffin, 2002.)
Monday, December 8, 2008
Nothing settles a crummy weekend like chocolate! (plus they are almost guilt free - seriously)!
There’s a whole bag of Starlight mints on top of those babies. Too bad all of the pan smacking came before all the drama…
And I’ll admit, I was feeling a little festive.
(My camera is still out of commission. Thanks D for photographing!)
Saturday, December 6, 2008
For the past few weeks, I’ve been feeling markedly better. And then, Tuesday was very busy and at 8 p.m., as my head started to pound and I couldn’t see straight, I realized that I had forgotten to take my evening cellcept, which I usually take around 5 p.m.
Realizing that if I was going to get any work done after class, I needed to take the cellcept to get rid of the headache, but had to take the cellcept on a not so empty stomach. (Notice that I was worried more about not being able to get work done than about not taking my medication…) Needless to say, I ended up with a horrible headache, nauseous and dizzy, suddenly remembering the feeling that I hated so much when I was really sick – being plastered to a wall, waiting for someone to scrape me off of it – and of course, there was no one there to talk me down.
Unfortunately, this was a good lesson. Except that the week got progressively crazier. I came back from Thanksgiving behind on everything. Somehow, I managed to grade 47 term papers in two and a half days. But of course, that meant that I sacrificed a lot of sleep to do that. So much, in fact, that I completely forgot to take my GERD medication one day, and made the decision on two occasions not to take the flexeril because I wasn’t going to be able to sleep enough to fully recover from the haze that it puts me in. For instance, I went to bed at 1 a.m. on Thursday to be up at 6 a.m. to get ready to teach. I didn’t sleep well, though, so I probably go less than four hours sleep.
So, I’ve been a pretty bad patient this past week, which only goes to prove Doctor C right that grad school and chronic illness don’t mix. This has been, by far, the most stressful part of this semester, and my medical routine went right out the window. But I am somewhat impressed with myself that I’m finally at a point where I know when my medication is going to do me more harm than good. Or I’m at a point where I no longer care…
Of course, all of this rebelliousness isn’t without self-loathing. It immediately started the cycle of self-defeating thoughts. If only I had taken the cellcept when I was supposed to. If only I were a better patient, student, etc., etc… Then what? I wouldn’t be sick? The problem with this kind of thinking is that it doesn’t lead to anywhere good.
The other thing is that just because I feel better, doesn’t mean I feel like I fit into the world any better. When I was feeling bad, I actively tried to hide it by plastering on a fake smile. Now that I’m feeling good, I feel like I’m doing the same thing. It’s all a façade. Happiness doesn’t come in pill bottles. Sick is sick…
On the school front, aside from trying to survive the last few days of the semester, things have fallen into place in my favor for next semester, so it looks like I may be attempting to take things a little easier. Sometimes asking for help is necessary because it means saving your own ass…
So, as the New Year approaches (more quickly than we’d think), while some people will try and shed pounds or adopt new forms of spirituality, I am going to attempt to cut down on my commitments. This isn’t going to be an easy thing to do, as I am a “yes” woman. But it’s necessary.
Just call this identity crisis two million and one. I’m not surprised. Are you?
Sometimes, denial is a good thing…
Tuesday, December 2, 2008
Check out last week’s Grand Rounds, hosted by Canadian Medicine. It’s a very diverse edition of Grand Rounds and features a post by yours truly.
Also, I contacted Ellyn Spragins, the author of “What I Know Now: Letters to My Younger Self”. I shared the letter I wrote to myself with her and she asked if she could publish it on her site. Check out my letter! Thanks, Ellyn!
Once my life calms down a bit in terms of workload, I’ll be back on the blogging circuit.