Friday, December 26, 2008
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!
Saturday, December 20, 2008
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?”
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:
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.
*****
Larson, Jonathan. “Seasons of Love.” Rent. Warner Brothers Records, 2005.
Tuesday, December 16, 2008
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!!!)
Sunday, December 14, 2008
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!
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!
Thursday, December 11, 2008
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:
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?
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?
Tuesday, December 9, 2008
"Writing Out The Storm"
I bought the book, “Writing Out the Storm” by Barbara Abercrombie several months ago, but with the craziness of school and everything else, I only just finished it.
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.)
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
Peppermint Brownies
I went to a party Friday night and made brownies for the occasion. It has been so long since I cooked, I really had no idea how this experimental recipe was going to turn out. But it was a success.
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.
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
When Asking For Help Is Useful And Victim Blaming Is Not
The problem with feeling better is that it doesn’t mean I’m back to my old self, even though I settle comfortably back into my old routines of not enough food and too little rest.
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…
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
A Little Shameless Self Promotion
Wow, I am so behind on life at the moment, so this is going to be a really quick post.
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.
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.
Monday, November 24, 2008
"Feeling Strangely Fine"
“At night she spreads her wings
She dreams of bigger things
She floats above the town
She sings without a sound”
- “She Spreads Her Wings,” Semisonic
*****
“I spread my wings and I learn how to fly
I’ll do what it takes til’ I touch the sky
And I’ll make a wish
Take a chance
Make a change
And breakaway”
- “Breakaway,” Kelly Clarkson
The last few days I’ve been very busy with work and other things, mainly because I could. I’ve actually started to feel like my “old” self again, although this has made me fall quickly into habits that I should still be avoiding, even though I’m feeling better (like organizing at two in the morning).
But it’s strange. I was feeling pretty bad when I wrote my last post about my doctor’s appointment, which turned out not to go as I had planned. But I’ve come to the realization that Doctor C and I are never going to understand each other completely. And we’ll both just have to deal.
I think that what frustrated me the most is that in the beginning, I was basically forced into taking medication. Granted, no one had to shove it down my throat, but I was pretty unsure about the whole thing. And now, I was primed and ready to go for new medication, but Doctor C obviously had other plans.
There has also been some movement in the right direction by my department, as there seemed to be a lapse in communication, which I alerted those involved to (and the situation was resolved).
I’ve also made space in my life for things that I had sort of closed the door to, things that I probably wouldn’t really have even considered pre-illness.
It’s odd to think how quickly things can change, sometimes for better, sometimes worse. And it’s crazy to realize that, shockingly (I’ll admit), life does go on despite illness. I never thought I’d say that (and I bet you didn’t think you’d ever hear me say it), but I am saying it. And I’m happy to be saying it!
But it’s strange. I was feeling pretty bad when I wrote my last post about my doctor’s appointment, which turned out not to go as I had planned. But I’ve come to the realization that Doctor C and I are never going to understand each other completely. And we’ll both just have to deal.
I think that what frustrated me the most is that in the beginning, I was basically forced into taking medication. Granted, no one had to shove it down my throat, but I was pretty unsure about the whole thing. And now, I was primed and ready to go for new medication, but Doctor C obviously had other plans.
There has also been some movement in the right direction by my department, as there seemed to be a lapse in communication, which I alerted those involved to (and the situation was resolved).
I’ve also made space in my life for things that I had sort of closed the door to, things that I probably wouldn’t really have even considered pre-illness.
It’s odd to think how quickly things can change, sometimes for better, sometimes worse. And it’s crazy to realize that, shockingly (I’ll admit), life does go on despite illness. I never thought I’d say that (and I bet you didn’t think you’d ever hear me say it), but I am saying it. And I’m happy to be saying it!
When I look in the mirror, I’m beginning to recognize the person that stares back at me. Me! Or maybe I’m beginning to be okay with that person, cranky body and all. I feel like I’ve shed some layers or baggage or whatever you want to call it. For the first time in a while, I think I can say that I’m happy, that despite the aches and pains, life is more good than bad at the moment.
For me, illness has forced me to become more spontaneous, to let things go, and to not take things so seriously. I’ve learned that some things don’t need as much attention as I’ve given them, and others need more attention than I’d previously thought or wanted to admit (self-care, ahem (cough), ahem (cough)).
At some point, the feeling of an ever-crumbling foundation has to stop. It’s nice to have other, less pressing matters to worry about. And it’s nice to see my friends rally around me for things that at our age, we should be worried and excited about.
I do worry, though, that this burst of “health” is going to be short-lived. But I learned very early on in this journey that worrying and being afraid all the time doesn’t solve anything, in fact, it often times makes things worse.
So I’m going to face today for what today has to offer, nothing more, nothing less. And I’m going to keep this positive attitude for as long as I can.
(Now there’s something to be thankful for! And since I probably won’t get a chance to post again, Happy Thanksgiving!)
Wednesday, November 19, 2008
It's A Numbers Game
I had anticipated today’s rheumatologist appointment would be a useful one. And alas, it wasn’t.
After taking me almost an hour late – and the nurse asking me if I was okay (?) – Doctor C’s sage advice was, “Have you considered taking a break from school?” Oh yes, because it’s really that simple.
But since my “levels” are all much improved, no major change in my medication. And Doctor C can’t tell me why I’m still in pain. Doctor C is confident, though, that the pain I’m in isn’t indicative of potential joint damage.
Basically, I left my appointment feeling pissed, frustrated, and angry. Why does everything have to be so complicated?
Doctor C has cut me loose for six months. And I’ve made the decision that at my next appointment, I’m going to ask to be taken off all the medication. I’m done with this back and forth, up and down, changing doses when none of it did a damn thing anyway.
You know, as much as I think Doctor C is doing a good job, this approach just isn’t working for me. It frustrates me that the only solutions Doctor C can come up with are impossible and impractical ones. And I continue to guard my emotions, to attempt to appear invulnerable and in control.
Hence, the problem in our relationship, as it has always been, is a profound failure to communicate. Because Doctor C speaks in a foreign language and I don’t speak at all. But how to convey the frustration, the difficulties that I face and feel in an unemotional way?
I couldn’t bring myself to ask the question that I really want an answer to – Is this as good as it gets? Is the way I feel at this moment the best I can hope for? It’s a set of questions that I’m obviously not ready to hear the answer to. On the other hand, maybe I already have.
Just as it appears that my healthy and sick lives are not synonymous, neither is my personality and Doctor C’s.
There are so many times when I’m tempted to say something like, “I know sometimes my social skills are found wanting, but that’s because I don’t feel good. What’s your excuse?”
The truth is, I had written Doctor C off a long time ago. And I’m not sure where I stand at the moment. 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.
I guess I shouldn’t be all that surprised that in the end, all it comes down to is the numbers. But I guess my main fight this whole time was to be more than just a number, more than my illnesses, and more than just a patient.
So here’s a number for you. Zero. Zip. Zilch. None. I’m done!
After taking me almost an hour late – and the nurse asking me if I was okay (?) – Doctor C’s sage advice was, “Have you considered taking a break from school?” Oh yes, because it’s really that simple.
But since my “levels” are all much improved, no major change in my medication. And Doctor C can’t tell me why I’m still in pain. Doctor C is confident, though, that the pain I’m in isn’t indicative of potential joint damage.
Basically, I left my appointment feeling pissed, frustrated, and angry. Why does everything have to be so complicated?
Doctor C has cut me loose for six months. And I’ve made the decision that at my next appointment, I’m going to ask to be taken off all the medication. I’m done with this back and forth, up and down, changing doses when none of it did a damn thing anyway.
You know, as much as I think Doctor C is doing a good job, this approach just isn’t working for me. It frustrates me that the only solutions Doctor C can come up with are impossible and impractical ones. And I continue to guard my emotions, to attempt to appear invulnerable and in control.
Hence, the problem in our relationship, as it has always been, is a profound failure to communicate. Because Doctor C speaks in a foreign language and I don’t speak at all. But how to convey the frustration, the difficulties that I face and feel in an unemotional way?
I couldn’t bring myself to ask the question that I really want an answer to – Is this as good as it gets? Is the way I feel at this moment the best I can hope for? It’s a set of questions that I’m obviously not ready to hear the answer to. On the other hand, maybe I already have.
Just as it appears that my healthy and sick lives are not synonymous, neither is my personality and Doctor C’s.
There are so many times when I’m tempted to say something like, “I know sometimes my social skills are found wanting, but that’s because I don’t feel good. What’s your excuse?”
The truth is, I had written Doctor C off a long time ago. And I’m not sure where I stand at the moment. 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.
I guess I shouldn’t be all that surprised that in the end, all it comes down to is the numbers. But I guess my main fight this whole time was to be more than just a number, more than my illnesses, and more than just a patient.
So here’s a number for you. Zero. Zip. Zilch. None. I’m done!
(And I know that one day, even some day very soon, I will look back on this post and be shocked by my own flare for the dramatic. But at the moment, I’m feeling pretty steamed…)
Monday, November 17, 2008
Left Of Center
“[…] I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me […]
[…] Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me”
- “Superman,” Five For Fighting
***
“[…] I don’t know why I was so ashamed
Such a waste of time
And I don’t know who I was trying to be
All those lies […]
Oh and there’s always something
Or somebody right behind
Well we’re not meant to be everything
We’re just a piece […]
Oh I don’t know why I was so afraid all the time […]
I used to carry the weight of the world
I used to carry the weight of the world
And now all I wanna do is spread my wings and fly”
- “Weight of the World,” Chantal Kreviazuk
My life feels off kilter and unbalanced and I’m not sure what to do about it…
I’ve realized that having attempted (and sometimes succeeded) at superhuman feats in my not-so-long-ago past life, I’ve set the bar incredibly high for which to judge myself and for others to judge me.
And now, when I’m no longer physically capable of such acts, it’s no wonder that people can’t possibly begin to understand why (not). In some ways, I feel like I set myself up for (inevitable) failure, whether caused by myself directly or by forces out of my control.
As a senior in college, I wrote a 125+ page honors thesis. And it never occurred to anyone to tell me what a terrible idea that was. And now it haunts me that the person who wrote that, whose blood, sweat, and tears created it, no longer exists – I can no longer afford to be the person I once was.
And it’s ironic (I think) that so many of us “Type A-ers” are the ones that get autoimmune diseases. Because when we are no longer able to compete at our previous levels, all there is, is disappointment.
And we are, in effect, asked to make a lifestyle change. For me, though, that doesn’t mean changing something small. It means changing who I am as a person. It means taking my expectations of myself (and by extension, everyone else’s), packing them up, and burying them. And maybe the truth is that those “profound” lifestyle changes were changes I should have made a long time ago.
This line of thinking is related to the recent backlash I have received from people. Another possibility for this treatment is that while they would never admit it, the people who have been less than helpful know they wouldn’t be as strong as I am. I don’t say that in an “I’m so great” sort of way. What I mean is that they are afraid of how they would react, being in my position. On the other hand, maybe they’ve dealt with things in their lives where they received little support and are angry and take it out on those most vulnerable because they can.
And I hope that if that’s the case, regardless of what my experiences have been, that I will never do that to others. That I won’t become so bitter and resentful that I refuse to give others a break because I didn’t get one.
But the truth is, I think it’s admirable to admit when a specific part of your life infringes on all other aspects of it and you don’t pretend like things are fine when they aren’t. And I realize now that, that is what the problem is. I’m doing fine in my program, I’m pretty much on schedule. If I were flunking out, maybe then people would pay attention.
I’ve never been one of the “popular” kids. Throughout life, I have had various personal appearance (frizzy hair, glasses, braces on my teeth for far too long, etc.) and personality (smart, etc.) issues that warranted “dork” status.
When I got to grad school, though, in some ways, I felt like I had left that complex behind. Even though there were many times in that first year when I questioned my own abilities, by virtue of having been accepted into such a highly ranked grad program in my field of study, I was suddenly thrust into the spotlight. At every turn, professors who had read or heard about my thesis would go on and on about me.
And then I got sick and my tenure as a member of the “in crowd” receded once again, relegating me even farther down the food chain than I was before – from “dork” to pariah.
And that’s where I remain.
(And I don’t mean that to garner sympathy. I say that because I have a feeling that some of you out there will know exactly what I’m talking about.)
I’ve had so many thoughts and feelings swimming through my head lately.
It’s not as simple as burning pictures and banishing memories from my head. It’s about admitting to myself and others that the person I was before can no longer be. And it’s about learning to not be ashamed of that. And about learning to ask for help, even when I don’t want to.
When I was doing all my reading of books about lupus, rheumatoid arthritis, and prednisone, about how to dance with the devil and still make it out of hell, I wasn’t grieving. I was still trying to be an “outsider,” viewing my life from someone else’s perspective and not my own.
And I struggle with the fact that I have an appointment with Doctor C on Wednesday, and while I’ve thought of every possible way to get out of it, it seems that hiding or attempting to run from my problems is the unhealthiest way to deal with things.
The whole concept of “premature aging” pretty much sucks, but learning to accept your own fallibility, is unfortunately, a valuable lesson to learn. And I’m not sure that there are ever enough tears that can be shed or that we can ever truly accept the fact that we are only human.
And yet again, disclosure is a complicated thing. It’s hard to decide how open to be about such things. But what really frustrates me are the people who have no right to think they know what my life is like, and yet they compare themselves.
There are, however, friends I’ve made from the chronic illness virtual community who sometimes shock me because they get me so well. Even though we don’t communicate face-to-face, they can sometimes fill my wordless void and come up with the right words for me. And then there are people in-person whose unsympathetic, unsupportive words hit me like a ton of bricks. Shouldn’t the roles be reversed? How can someone that I’ve never met before get me so well, and someone I see on a weekly basis not know me at all?
Then there are those, who, in their own quiet way, are watching, and listening, and appreciating the effort that it takes just to get through the day. But inevitably, they are the ones who are all too familiar with the “identity shift” that takes place when you go from “healthy” to sick.
So, I guess what I’m trying to say in my own convoluted and verbose way is that I’m deeply confused. I’ve realized that I have to let go of my “pre-illness” self and learn to adapt to life as a new person and I have to learn which battles are worth fighting and which are not.
Fighting for control in a situation that you don’t have control over is like fighting for air with a plastic bag over your head. And the truth is, I haven’t exactly taken the bull by the horns with the little part that I do have control over. I’m just not that good at the self-care part.
That was then, this is now…
Heal thyself.
Life and let live.
(I’m not even sure how much sense this post makes because it has been written in fragments over the past week or so, but I figured it was long overdue, so I posted it anyway…)
Friday, November 14, 2008
Virtual Book Tour: "Women, Work, And Autoimmune Disease: Keep Working Girlfriend"
Today, I am honored to be interviewing Rosalind Joffe about her book, coauthored with Joan Friedlander, “Women, Work, and Autoimmune Disease: Keep Working Girlfriend” for her virtual book tour. Rosalind was one of the first people I connected with online when I started researching autoimmune diseases and was trying to find the support of others like me (chronically ill). She interviewed me for her blog Working With Chronic Illness very early in my blog “career,” so I feel like I have come full circle having the opportunity to interview Rosalind today for my blog.
Leslie Rott: First of all, Rosalind, could you provide my readers with a little bit of background about yourself and your book?
Rosalind Joffe: I’ve lived with chronic illnesses for 30 years – multiple sclerosis, ulcerative colitis (5 years and then ‘cured’ with ileostomy), and others. My husband and I have two grown daughters and I’ve worked since college (35 years) except for two years, when I was on SSDI. When I returned to working after disability, I decided I had to figure out work that I could continue to do with my unpredictable health issues. And it had to be something I cared deeply about, enough so to get me out of bed even on the worst days and would be worth devoting my limited resources. And I have done that -- coaching people with chronic illness in keeping their careers going. This experience inspired the book. Realizing how difficult it is for anyone, but women in particular, to live with chronic illness and stay successful in the workforce.
LR: What is a virtual book tour? How does it work and why did you decide to have one for your book?
RJ: A virtual book tour is an online journey that takes readers to different bloggers who post something about your book. These days, non-fiction books don’t typically sell well in brick and mortar bookstores. But the Internet, with its ability to hone in on a special interest, gives niche books an opportunity to find their audience. I know that the disease community is a vibrant blogging force and believe that this is a terrific way to get my message out there while also creating stronger links among the bloggers.
LR: Why did you choose to focus your book on working women specifically?
RJ: From working with such a wide variety of people with chronic illness, it’s easy to see that there are so many issues that need to be addressed regarding work and chronic illness. We chose this focus for three reasons: both Joan and I had personal experience with autoimmune disease and working, four times as many women than men have autoimmune disease, and these diseases tend to get worse during those years when most people are at the intersection of career and family building.
LR: How do you, as a woman with chronic illness, manage to balance all of the commitments in your own life?
Leslie Rott: First of all, Rosalind, could you provide my readers with a little bit of background about yourself and your book?
Rosalind Joffe: I’ve lived with chronic illnesses for 30 years – multiple sclerosis, ulcerative colitis (5 years and then ‘cured’ with ileostomy), and others. My husband and I have two grown daughters and I’ve worked since college (35 years) except for two years, when I was on SSDI. When I returned to working after disability, I decided I had to figure out work that I could continue to do with my unpredictable health issues. And it had to be something I cared deeply about, enough so to get me out of bed even on the worst days and would be worth devoting my limited resources. And I have done that -- coaching people with chronic illness in keeping their careers going. This experience inspired the book. Realizing how difficult it is for anyone, but women in particular, to live with chronic illness and stay successful in the workforce.
LR: What is a virtual book tour? How does it work and why did you decide to have one for your book?
RJ: A virtual book tour is an online journey that takes readers to different bloggers who post something about your book. These days, non-fiction books don’t typically sell well in brick and mortar bookstores. But the Internet, with its ability to hone in on a special interest, gives niche books an opportunity to find their audience. I know that the disease community is a vibrant blogging force and believe that this is a terrific way to get my message out there while also creating stronger links among the bloggers.
LR: Why did you choose to focus your book on working women specifically?
RJ: From working with such a wide variety of people with chronic illness, it’s easy to see that there are so many issues that need to be addressed regarding work and chronic illness. We chose this focus for three reasons: both Joan and I had personal experience with autoimmune disease and working, four times as many women than men have autoimmune disease, and these diseases tend to get worse during those years when most people are at the intersection of career and family building.
LR: How do you, as a woman with chronic illness, manage to balance all of the commitments in your own life?
RJ: Well, it depends on what you mean by balance. We’re always “balancing” commitments, but that is different from being “in balance”. In the last chapter of the book, I describe hope and resilience and I think those two qualities are what sustain me. The sense that however bad this moment is, tomorrow could be different and better, is hope. And the ability to bounce back to a standing position, even after you’ve been hit with a resounding punch, is resilience. I’ve worked all of my adult life on nurturing these two qualities.
LR: One thing that I have found so interesting during my time as a chronic illness blogger is the universality of the stories and experiences shared by members of the chronic illness community, regardless of disease. Just as an example, even though I am not a working woman, your book resonated with me on many levels (see my review of "Women, Work, and Autoimmune Disease: Keep Working Girlfriend"). Why do you think this is and do you view this as an integral part of what keeps the chronic illness community going? :
RJ: I’m delighted to hear you say that because from the outset, when I developed cicoach.com, I decided that I wanted to work with anyone who lives with any chronic illness or condition, not just people with multiple sclerosis or ulcerative colitis (diseases I have). We focused the book on AD because of the prevalence among women, but we tried to emphasize that although course and symptoms among chronic diseases might vary, the issues that they create in our lives are the same.
And I think that’s critical for people to realize. It gives all of us living with chronic disease a common voice rather than struggling to see how one disease differs from another. The more we can see the common themes, the better able we are to address and get what we all need – from healthcare, the workplace and society at large.
And now, I’ll step down off my soapbox!
LR: In your book, you provide a lot of advice for working women, women who are knee-deep in their careers when chronic illness steps in. What advice would you give to women in their 20s and 30s who are coping with chronic illness and are trying to balance other life issues as opposed to working (for instance, being in graduate school, like me)?
RJ: I’ve found that it’s helpful to realize that we are who we are wherever we are. It doesn’t matter whether you’re a student, a parent, or a working person. The issues are the same. You’ve got competing demands on your energy and time. You’ve got other people’s expectations for what you can and can’t do. Finally, you’ve got your own interests, needs and expectations. You can’t possibly meet them all – even healthy people don’t. You’re just likely to meet fewer than other people. But if you normalize the challenge by recognizing that everyone makes compromises, faces disappointing themselves and others, and has to realign what is possible, you can put things into perspective. We waste a lot of time being unhappy over what isn’t. Better to focus on what is.
LR: In your book, you talk about women with chronic illnesses as being part of a “sisterhood”. Aside from blogging and sharing our stories with others, how else can we keep the “sisterhood” going and participate in advocacy and awareness regarding chronic illness without wearing ourselves out in the process?
RJ: That’s a tough one for me to answer because blogging and sharing stories is what I do (in addition to working with my clients, coaching them). Although we wrote the book for women, I’ve always wanted to and tried to include men in this discussion as well because I’ve seen that chronic illness is just as hard on men as it is on women and in many of the same ways. We all benefit from knowing we’re not alone.
LR: Is there anything else you would like my readers to know?
RJ: Since I have a hunch that most of your readers are more like you (a student) than not, I encourage them to consider the long term when making decisions – whether it’s about school, work or personal. Living with chronic illness can mean that you live with more limitations than you’d like. So you have to be more strategic and maybe even a little less spontaneous. But if you’re lucky, life is long and if you’re patient, you have time to achieve most of what you seek. It might not be in the time frame you want or even the package you expect. But when you maintain hope and resilience, you’re more likely to recognize that dream when it becomes your reality.
LR: I think that many of us hope to live up to the challenge that you pose, to fulfill ones passions, while still being able to balance all of life’s craziness in addition to chronic illness.
Thank you, Rosalind, for allowing Getting Closer to Myself to be one of the stops on your virtual book tour! My readers and I greatly appreciate all of your efforts and the advice and wisdom that you offer, both in the interview today, and in your book, “Women, Work, and Autoimmune Disease: Keep Working Girlfriend”!
LR: In your book, you provide a lot of advice for working women, women who are knee-deep in their careers when chronic illness steps in. What advice would you give to women in their 20s and 30s who are coping with chronic illness and are trying to balance other life issues as opposed to working (for instance, being in graduate school, like me)?
RJ: I’ve found that it’s helpful to realize that we are who we are wherever we are. It doesn’t matter whether you’re a student, a parent, or a working person. The issues are the same. You’ve got competing demands on your energy and time. You’ve got other people’s expectations for what you can and can’t do. Finally, you’ve got your own interests, needs and expectations. You can’t possibly meet them all – even healthy people don’t. You’re just likely to meet fewer than other people. But if you normalize the challenge by recognizing that everyone makes compromises, faces disappointing themselves and others, and has to realign what is possible, you can put things into perspective. We waste a lot of time being unhappy over what isn’t. Better to focus on what is.
LR: In your book, you talk about women with chronic illnesses as being part of a “sisterhood”. Aside from blogging and sharing our stories with others, how else can we keep the “sisterhood” going and participate in advocacy and awareness regarding chronic illness without wearing ourselves out in the process?
RJ: That’s a tough one for me to answer because blogging and sharing stories is what I do (in addition to working with my clients, coaching them). Although we wrote the book for women, I’ve always wanted to and tried to include men in this discussion as well because I’ve seen that chronic illness is just as hard on men as it is on women and in many of the same ways. We all benefit from knowing we’re not alone.
LR: Is there anything else you would like my readers to know?
RJ: Since I have a hunch that most of your readers are more like you (a student) than not, I encourage them to consider the long term when making decisions – whether it’s about school, work or personal. Living with chronic illness can mean that you live with more limitations than you’d like. So you have to be more strategic and maybe even a little less spontaneous. But if you’re lucky, life is long and if you’re patient, you have time to achieve most of what you seek. It might not be in the time frame you want or even the package you expect. But when you maintain hope and resilience, you’re more likely to recognize that dream when it becomes your reality.
LR: I think that many of us hope to live up to the challenge that you pose, to fulfill ones passions, while still being able to balance all of life’s craziness in addition to chronic illness.
Thank you, Rosalind, for allowing Getting Closer to Myself to be one of the stops on your virtual book tour! My readers and I greatly appreciate all of your efforts and the advice and wisdom that you offer, both in the interview today, and in your book, “Women, Work, and Autoimmune Disease: Keep Working Girlfriend”!
Please make sure to check Rosalind’s site and view all of the other blogs that have taken part in the virtual book tour thus far, and who are yet to come next week.
Tuesday, November 11, 2008
The Lemonade Award
While I hadn’t planned on posting again this week until Rosalind Joffe’s Virtual Book Tour for “Women, Work, and Autoimmune Disease: Keep Working Girlfriend” stops by Getting Closer to Myself (GCTM) on Friday, Maureen Hayes from Being Chronically Ill Is A Pill has graciously awarded GCTM yet again, this time with the Lemonade Award.
According to Maureen’s blog, “This award is given to blogs demonstrating a [n] attitude of gratitude.”
While I’m very appreciative of this award, I’m going to monkey with tradition a bit here and provide ten things that I’m thankful for, instead of awarding this to ten other blogs. The reason for this is because several of the blogs Maureen awarded along with GCTM, I would have awarded also (it’s not that there aren’t others that deserve it, or that I don’t read that many blogs! – truthfully, I’m pretty strapped for time at the moment), and because it’s almost Thanksgiving (and what better time to think of things to be thankful for?):
1. My family and friends
2. Days when my pain doesn’t get the best of me
3. People who read my blog other than me
4. Lately, coffee/caffeine
5. The passion I have for my research, which is really the only thing keeping me in grad school these days
6. Random “adventures” with friends that still allow for a little spontaneity in my life
7. Doctor’s appointments schedule at the perfect time, right when I’m at my breaking point
8. A good book (suggestions welcome – I’ve been a little sparse on the “pleasure” reading lately)
9. People that appreciate me for who I am
10. Knowing that there are other people out there like me, even if they aren’t in the same state
I guess that about sums things up right now! I hope it’s okay, Maureen, that I monkey-ed with tradition a bit, and I hope this post is still in keeping with the spirit of the award.
Also, make sure you stop by my other (new-ish) blog, Chronic Illness Creative Energy Project (CICEP) and check out the new things I’ve posted there!
"My Life As I Know It ... Right Now (An Unconventional Poem)"
I am burning through my SPF 50 sunscreen
I think I am allergic to the rain
I take 11 pills a day... Count them... 11
My hair is falling out...
I thought this, but my sister assured me when we were at the hairdresser getting hair cuts and she told me that my hair was clogging up the drain
I don’t have much of an appetite
The fluorescent lights in my office give me a headache
My head is foggy and I can’t concentrate on anything but trying to compose a thought
I’m so nauseous and dizzy, I get stopped in my tracks... I can’t distinguish the ceiling from the floor
My body seems to know only two temperatures – Too cold and too hot
I am still sporting a bruise from blood I had drawn nearly three weeks
My patience is wearing thin
I hate looking in the mirror
I am sick of bumps in the road
I am tired of being tired all the time
I wish I felt my age instead of feeling like I’m 80 when I’m only 22
But of course, things could always be worse...
So they tell me, and I try to believe...
This is the poem that I submitted for the “Creative Corner” of “Lupus Now”. I highly recommend checking out the other stories and poems that are posted there.
I think I am allergic to the rain
I take 11 pills a day... Count them... 11
My hair is falling out...
I thought this, but my sister assured me when we were at the hairdresser getting hair cuts and she told me that my hair was clogging up the drain
I don’t have much of an appetite
The fluorescent lights in my office give me a headache
My head is foggy and I can’t concentrate on anything but trying to compose a thought
I’m so nauseous and dizzy, I get stopped in my tracks... I can’t distinguish the ceiling from the floor
My body seems to know only two temperatures – Too cold and too hot
I am still sporting a bruise from blood I had drawn nearly three weeks
My patience is wearing thin
I hate looking in the mirror
I am sick of bumps in the road
I am tired of being tired all the time
I wish I felt my age instead of feeling like I’m 80 when I’m only 22
But of course, things could always be worse...
So they tell me, and I try to believe...
This is the poem that I submitted for the “Creative Corner” of “Lupus Now”. I highly recommend checking out the other stories and poems that are posted there.
Monday, November 10, 2008
"Seeing Is Believing"
You look at me
And think that looking also means
Knowing who I am
But underneath the polished veneer
That you take to mean an easy life
My life is far from easy
Some people would even call it hard, difficult
Some might even say it sucks
So I can no longer linger on what you may think
Of me
Or not think of me, for that matter
Because I am
A multitude of things
And whether or not you choose see it
I am me
I had jaded myself into thinking that I would make this poem longer. But to no avail, I finally decided to post it. This poem explores issues of judgment and invisibility, and while it does not explicitly talk about illness, it is in reference to such illness-related issues.
And think that looking also means
Knowing who I am
But underneath the polished veneer
That you take to mean an easy life
My life is far from easy
Some people would even call it hard, difficult
Some might even say it sucks
So I can no longer linger on what you may think
Of me
Or not think of me, for that matter
Because I am
A multitude of things
And whether or not you choose see it
I am me
I had jaded myself into thinking that I would make this poem longer. But to no avail, I finally decided to post it. This poem explores issues of judgment and invisibility, and while it does not explicitly talk about illness, it is in reference to such illness-related issues.
Making The Choice And Facing The Consequences
One of the many choices we face, as chronically ill people, is whether we should or want to be labeled as such. I, personally, have had several experiences with this.
The first is, as I have mentioned several times before, that Doctor C was at first hesitant to provide me with a diagnosis because of not wanting to “label” me.
More recently, however, more labels have been tied to my person. I have joined the ranks of students with “disabilities.” Doctor C had to fill out the “chronic health conditions” verification form, which was submitted to the office that advocates for students with “disabilities.”
Don’t get me wrong here. I’m certainly appreciative of the help and support that I have received from these organizations. However, an issue that we talk about often – disclosure – really takes center stage here. Not only do I become a person with lupus and rheumatoid arthritis, I also become seen as being chronically ill and disabled.
Obviously, since I blog about my illnesses, I have accepted the label of being chronically ill. However, accepting these labels in the “institutional” setting makes them even more real than they were before.
And there are, of course, pros and cons to being seen this way. So maybe for those who wonder why I waited so long to ask for help (nearly a year and a half of being sick and six months after my diagnosis), can understand that being “out” about such issues is both a blessing and a curse.
When disclosing goes well, or you share in a “safe space” with like others, which rarely happens, it can feel like a weight has been lifted off of your shoulders. I, for one, struggle on a daily basis with the fact that so few of the people I am around most of the time have no idea what’s going on. It makes me feel like a fraud. It makes me feel like I really do have something to be ashamed of, that I actively have to hide and conceal my illnesses for fear of being exposed as what I truly am – sick – and all of the questions about my ability that comes with it.
And part of this feeling is based on the fact that my department has not been entirely (if at all) supportive of what has been going on. One of many questions I ask myself lately is - do I want to continue in a department that does not support my needs? Do I want to stay in graduate school?
I had another meeting this week, with a different person from a different office. The meeting, itself, went well, but I am not really sure what the status is of things at the moment.
And as I spent that meeting telling my story and contemplating my need for voice recognition software and a backpack on wheels, I realize that there are choices that have to be made. And they are no different than the ones I make on a daily basis.
Early on in this experience, I was playing the role of a rebellious teenager, thinking about the allure of defying medical authority by not taking my medication. There was no rationale behind this thought other than to “stick it” to someone. Now, however, there is the question of whether I am better off taking the medication or not. And while the answer seems like a simple one, it isn’t.
Next week, I have an appointment with Doctor C, and it is clear to me that some changes need to be made. But I also know, even before having the options in front of me, that the choice will not be an easy one, because there is always something to be gained and something to be lost in this process. For instance, given the choice of prednisone or not, would I go for the prednisone again?
These are tough questions. But there always have been and always will be tough questions. I think sometimes my friends get frustrated with my indecisiveness about little things, like where to study or where to eat, etc. But the truth is, it’s only because I have to face the tough questions and make decisions, that when it comes to the little ones, it honestly doesn’t matter all that much whether we go here as opposed to there.
You know, having to have answers to the tough questions, sometimes on the fly, is both physically and emotionally draining. And lately, I have not been good at deciding when to take a break. Last week was crazy busy – I can’t believe that my last post was nearly a week ago – but on the other hand, I’m not all that surprised.
On Saturday, it wasn’t until my cell phone started vibrating in the other room that I got out of bed. And on Sunday, it wasn’t until the obnoxiously loud bells from the church down the street ushered me out of bed. For once, isolation was nice. The people that needed me or wanted to see me or talk, called or e-mailed me. I wasn’t rushing out to go anywhere, mainly because I didn’t have the energy to do so.
And Saturday was one of the most productive days I’ve had in a long time. But no matter how relaxed or “normal” things can seem, there are always reminders. I met some friends for brunch yesterday morning to celebrate one of the friends birthday’s. It was a pretty long walk and really cold out. By the time I got home, I was exhausted. So I fell asleep on the couch at about three in the afternoon. And while you might want to say, “But Leslie, there are people in the world who nap who don’t have chronic illnesses,” that’s true. But this is all relative. And I never was much of a napper before the chronic illness stage of my life.
There are many mornings where I stare at the prescription bottles lined up on the counter and think about how much easier life would be without them. On the other hand, I know if I take the cellcept more than three hours later than my usual time, I will end up with one of the worst headaches imaginable. The back of my head will pound and it will feel like my brain is going to explode.
So there are many choices that have to me made. And some are easier than others. Do I disclose and risk losing everything or do I stay silent and risk losing everything? Do I take my medication or do I tempt fate? Do I go to a get-together or do I stay in bed? Do I put on a brave face for nearly everyone in my life, when really, I’m in pain?
Yes, there are always tough questions. But it’s about opportunity cost, about calculating the risk and the reward. But sometimes, we don’t have the time or energy to consider the opportunity cost. And sometimes we don’t have the energy to think that hard and over-analyze everything (as some of us are wont to do).
The first is, as I have mentioned several times before, that Doctor C was at first hesitant to provide me with a diagnosis because of not wanting to “label” me.
More recently, however, more labels have been tied to my person. I have joined the ranks of students with “disabilities.” Doctor C had to fill out the “chronic health conditions” verification form, which was submitted to the office that advocates for students with “disabilities.”
Don’t get me wrong here. I’m certainly appreciative of the help and support that I have received from these organizations. However, an issue that we talk about often – disclosure – really takes center stage here. Not only do I become a person with lupus and rheumatoid arthritis, I also become seen as being chronically ill and disabled.
Obviously, since I blog about my illnesses, I have accepted the label of being chronically ill. However, accepting these labels in the “institutional” setting makes them even more real than they were before.
And there are, of course, pros and cons to being seen this way. So maybe for those who wonder why I waited so long to ask for help (nearly a year and a half of being sick and six months after my diagnosis), can understand that being “out” about such issues is both a blessing and a curse.
When disclosing goes well, or you share in a “safe space” with like others, which rarely happens, it can feel like a weight has been lifted off of your shoulders. I, for one, struggle on a daily basis with the fact that so few of the people I am around most of the time have no idea what’s going on. It makes me feel like a fraud. It makes me feel like I really do have something to be ashamed of, that I actively have to hide and conceal my illnesses for fear of being exposed as what I truly am – sick – and all of the questions about my ability that comes with it.
And part of this feeling is based on the fact that my department has not been entirely (if at all) supportive of what has been going on. One of many questions I ask myself lately is - do I want to continue in a department that does not support my needs? Do I want to stay in graduate school?
I had another meeting this week, with a different person from a different office. The meeting, itself, went well, but I am not really sure what the status is of things at the moment.
And as I spent that meeting telling my story and contemplating my need for voice recognition software and a backpack on wheels, I realize that there are choices that have to be made. And they are no different than the ones I make on a daily basis.
Early on in this experience, I was playing the role of a rebellious teenager, thinking about the allure of defying medical authority by not taking my medication. There was no rationale behind this thought other than to “stick it” to someone. Now, however, there is the question of whether I am better off taking the medication or not. And while the answer seems like a simple one, it isn’t.
Next week, I have an appointment with Doctor C, and it is clear to me that some changes need to be made. But I also know, even before having the options in front of me, that the choice will not be an easy one, because there is always something to be gained and something to be lost in this process. For instance, given the choice of prednisone or not, would I go for the prednisone again?
These are tough questions. But there always have been and always will be tough questions. I think sometimes my friends get frustrated with my indecisiveness about little things, like where to study or where to eat, etc. But the truth is, it’s only because I have to face the tough questions and make decisions, that when it comes to the little ones, it honestly doesn’t matter all that much whether we go here as opposed to there.
You know, having to have answers to the tough questions, sometimes on the fly, is both physically and emotionally draining. And lately, I have not been good at deciding when to take a break. Last week was crazy busy – I can’t believe that my last post was nearly a week ago – but on the other hand, I’m not all that surprised.
On Saturday, it wasn’t until my cell phone started vibrating in the other room that I got out of bed. And on Sunday, it wasn’t until the obnoxiously loud bells from the church down the street ushered me out of bed. For once, isolation was nice. The people that needed me or wanted to see me or talk, called or e-mailed me. I wasn’t rushing out to go anywhere, mainly because I didn’t have the energy to do so.
And Saturday was one of the most productive days I’ve had in a long time. But no matter how relaxed or “normal” things can seem, there are always reminders. I met some friends for brunch yesterday morning to celebrate one of the friends birthday’s. It was a pretty long walk and really cold out. By the time I got home, I was exhausted. So I fell asleep on the couch at about three in the afternoon. And while you might want to say, “But Leslie, there are people in the world who nap who don’t have chronic illnesses,” that’s true. But this is all relative. And I never was much of a napper before the chronic illness stage of my life.
There are many mornings where I stare at the prescription bottles lined up on the counter and think about how much easier life would be without them. On the other hand, I know if I take the cellcept more than three hours later than my usual time, I will end up with one of the worst headaches imaginable. The back of my head will pound and it will feel like my brain is going to explode.
So there are many choices that have to me made. And some are easier than others. Do I disclose and risk losing everything or do I stay silent and risk losing everything? Do I take my medication or do I tempt fate? Do I go to a get-together or do I stay in bed? Do I put on a brave face for nearly everyone in my life, when really, I’m in pain?
Yes, there are always tough questions. But it’s about opportunity cost, about calculating the risk and the reward. But sometimes, we don’t have the time or energy to consider the opportunity cost. And sometimes we don’t have the energy to think that hard and over-analyze everything (as some of us are wont to do).
Wednesday, November 5, 2008
Seeds of Change, Roots of Hope
I have attempted to keep my blog as apolitical as possible, but in light of yesterday’s election, I felt like I wanted to say something about the power that we have as bloggers.
For the first time in a long time, I am hopeful about the future. And given the physical and emotional ups and downs of the last year and a half, that is saying an awful lot!
And I’ve been trying to figure out why my generation (20-somethings) is so affected by the current political climate. And then I think about what my parents and grandparents have lived through – they have seen and been at the forefront of many important changes that this country has seen over the past half-century.
But I can’t say the same for myself. Sure, I was 16 when September 11th occurred and that profoundly affected my views on the world. But in a world where strife and hardship are a daily occurrence, I don’t feel like there has been any movement away from that.
And Barak Obama highlighted this historical trajectory in his victory speech (which you can read via NPR) early this morning – “A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination” – and it is this technological revolution, which has probably been the greatest change of my generation, which helped Barak Obama win the election (see BBC story about Internet strategy and the primaries). And it is that same technology that helps us advocate for people who are chronically ill everyday.
No matter what minority group you are a member of, even those that have yet to be spoken for, it is us, the everyday people, that have the ability to make change happen in America.
In a world where we daily fight for a shred of recognition, where some of us live in constant pain, without health insurance, people that don’t always understand us, doctors that speak another language, cures that don’t come fast enough or that are worse than the diseases themselves, by telling our stories and supporting each other, we set the stage so that change truly can occur.
I was thinking back to my parents growing up during the 1960s and the influences of that time that they have injected into my family. And the first thing I thought of was folk music. I think of songs, like “The Times They Are A Changin’” by Bob Dylan, which 35 years after it was originally written, holds as much meaning and promise as it did then:
If you don’t know all of the words of the song, I strongly suggest you read them here.
And so it is not only the outcome of yesterday’s election that gives me hope. Everyday I have hope because of all of the people that I have been able to meet in the chronic illness community; people who support each other and who give each other hope that tomorrow can be better than today.
So no matter what your political affiliation is, we all have the power to create change.
For the first time in a long time, I am hopeful about the future. And given the physical and emotional ups and downs of the last year and a half, that is saying an awful lot!
And I’ve been trying to figure out why my generation (20-somethings) is so affected by the current political climate. And then I think about what my parents and grandparents have lived through – they have seen and been at the forefront of many important changes that this country has seen over the past half-century.
But I can’t say the same for myself. Sure, I was 16 when September 11th occurred and that profoundly affected my views on the world. But in a world where strife and hardship are a daily occurrence, I don’t feel like there has been any movement away from that.
And Barak Obama highlighted this historical trajectory in his victory speech (which you can read via NPR) early this morning – “A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination” – and it is this technological revolution, which has probably been the greatest change of my generation, which helped Barak Obama win the election (see BBC story about Internet strategy and the primaries). And it is that same technology that helps us advocate for people who are chronically ill everyday.
No matter what minority group you are a member of, even those that have yet to be spoken for, it is us, the everyday people, that have the ability to make change happen in America.
In a world where we daily fight for a shred of recognition, where some of us live in constant pain, without health insurance, people that don’t always understand us, doctors that speak another language, cures that don’t come fast enough or that are worse than the diseases themselves, by telling our stories and supporting each other, we set the stage so that change truly can occur.
I was thinking back to my parents growing up during the 1960s and the influences of that time that they have injected into my family. And the first thing I thought of was folk music. I think of songs, like “The Times They Are A Changin’” by Bob Dylan, which 35 years after it was originally written, holds as much meaning and promise as it did then:
For the loser now
Will be later to win
For the times they are a-changin’.
If you don’t know all of the words of the song, I strongly suggest you read them here.
And so it is not only the outcome of yesterday’s election that gives me hope. Everyday I have hope because of all of the people that I have been able to meet in the chronic illness community; people who support each other and who give each other hope that tomorrow can be better than today.
So no matter what your political affiliation is, we all have the power to create change.
Tuesday, November 4, 2008
This Is Hilarious… And So Not True!!!
But it certainly put a smile on my face (and made me have delusions of grandeur about how much sway I have in the world)!
Where do people come up with this stuff?
* Please note that there is language in the above link that is not suitable for children. Please make sure that there are no children in the room when you click on the link. (I’m just trying to be a responsible citizen!)
Monday, November 3, 2008
Showing Up
Friday night I sat down to write a “poor me” post. I was alone in my apartment trying to recover from an exhausting week. But I didn’t end up finishing that post (as is evidenced by my lack of posting in recent days). Because the truth is, there were more ups than downs this week. And for once in a long time, the odds may finally be stacked in my favor.
As I’ve been writing about a lot lately, I’ve been having problems with getting my department on board about my illnesses and all that goes along with them. I had finally gotten a meeting with someone at the level of the graduate school. However, in talking with someone who has sort of been along with me during this entire process (even last year), I caught a break. The person I was talking to was very frustrated that I had been jumping through all these hoops without any help and offered to make a call to “a friend in a high place” on my behalf.
A half-hour later, I was in a meeting with that person, explaining the entire situation. And guess what? In two days time, more was accomplished than had been in the previous six months. This person called dozens of people for me, directed me to what forms had to be filled out by Doctor C, and was coordinating all of it. And Doctor C turned the form around in not even 24 hours worth of time.
Apparently, I’ve been talking to the wrong people all along, because I shouldn’t have been the one having to do the coordinating. But what is most interesting about this situation (other than the fact that it’s not what you know, but who you know) is that I was commended for taking the initiative to get “all my ducks in a row” before there was some emergency where they needed to be. While that was my whole point all along, I didn’t really see any positives where my abject failure is concerned.
However, in a roundabout way (about as roundabout as all of this coming together so quickly and seamlessly – finally!), this leads me back to an earlier lesson from this semester…
In my academic publishing class, my professor has stressed to us the importance of “showing up” for our daily scheduled writing times. In the beginning of the semester I rebelled against this notion. With a medication schedule and a newfound curfew/bedtime, I resisted any other attempts to further routinize my life.
But I’ve been doing some soul-searching these last few days, and I have realized that despite all evidence to the contrary, showing up really is key and I have a profoundly stupid ability to do so.
As I’ve tried to explain to several people, sometimes just my being able to be present in class, to drag myself to campus, to show up – is a big thing. And as I talk to others who skip class for no good reason, I realize that while others have to give me a break, I have to give myself a break, too (a shocking realization, I know).
But… [sigh] old habits die hard. And Thursday was a perfect example. Whether it’s the extra sleep I’ve been forcing myself to get over the last month and a half as per Doctor C or my newfound coffee habit (bad, bad, bad – I know), I do find myself with more energy than before. To me, though, extra energy still means exploit it, not conserve it. So I put in a 17-hour day. And it wasn’t until I hit my bed that I realized how exhausted and in pain I was. And I definitely paid for it all weekend.
Now the whole point of that is to say that now that my department is on board, I have to be more willing to ask for help and concessions when I need them. I didn’t just spend that last six months, and the last month in particular, trying to work these things out for nothing. And I should be more willing to take a day off when I need one. Everyone else does, so why shouldn’t I? After all, my whole purpose in this situation was to forcibly end my (and everyone else’s) denial that my life hasn’t changed since I’ve gotten sick. Because of course it has.
And now that things with my department are no longer on the fritz and I have people on my side, working to make sure that there are contingency plans in place, should I ever need them, I feel much more relaxed about things.
Of course, there are still hurdles to be jumped – personally, professionally, and medically – but for that matter, there will always be hurdles. At least for today, though, the hurdles are more my size. And even if I stumble along the way, at least I had the tenacity to show up in the first place.
* P.S. – Check out the first stop on the Women, Work, and Autoimmune Disease: Keep Working Girlfriend” virtual tour over at Rhymes With Migraine. The theme of that post goes really well with my post for today.
As I’ve been writing about a lot lately, I’ve been having problems with getting my department on board about my illnesses and all that goes along with them. I had finally gotten a meeting with someone at the level of the graduate school. However, in talking with someone who has sort of been along with me during this entire process (even last year), I caught a break. The person I was talking to was very frustrated that I had been jumping through all these hoops without any help and offered to make a call to “a friend in a high place” on my behalf.
A half-hour later, I was in a meeting with that person, explaining the entire situation. And guess what? In two days time, more was accomplished than had been in the previous six months. This person called dozens of people for me, directed me to what forms had to be filled out by Doctor C, and was coordinating all of it. And Doctor C turned the form around in not even 24 hours worth of time.
Apparently, I’ve been talking to the wrong people all along, because I shouldn’t have been the one having to do the coordinating. But what is most interesting about this situation (other than the fact that it’s not what you know, but who you know) is that I was commended for taking the initiative to get “all my ducks in a row” before there was some emergency where they needed to be. While that was my whole point all along, I didn’t really see any positives where my abject failure is concerned.
However, in a roundabout way (about as roundabout as all of this coming together so quickly and seamlessly – finally!), this leads me back to an earlier lesson from this semester…
In my academic publishing class, my professor has stressed to us the importance of “showing up” for our daily scheduled writing times. In the beginning of the semester I rebelled against this notion. With a medication schedule and a newfound curfew/bedtime, I resisted any other attempts to further routinize my life.
But I’ve been doing some soul-searching these last few days, and I have realized that despite all evidence to the contrary, showing up really is key and I have a profoundly stupid ability to do so.
As I’ve tried to explain to several people, sometimes just my being able to be present in class, to drag myself to campus, to show up – is a big thing. And as I talk to others who skip class for no good reason, I realize that while others have to give me a break, I have to give myself a break, too (a shocking realization, I know).
But… [sigh] old habits die hard. And Thursday was a perfect example. Whether it’s the extra sleep I’ve been forcing myself to get over the last month and a half as per Doctor C or my newfound coffee habit (bad, bad, bad – I know), I do find myself with more energy than before. To me, though, extra energy still means exploit it, not conserve it. So I put in a 17-hour day. And it wasn’t until I hit my bed that I realized how exhausted and in pain I was. And I definitely paid for it all weekend.
Now the whole point of that is to say that now that my department is on board, I have to be more willing to ask for help and concessions when I need them. I didn’t just spend that last six months, and the last month in particular, trying to work these things out for nothing. And I should be more willing to take a day off when I need one. Everyone else does, so why shouldn’t I? After all, my whole purpose in this situation was to forcibly end my (and everyone else’s) denial that my life hasn’t changed since I’ve gotten sick. Because of course it has.
And now that things with my department are no longer on the fritz and I have people on my side, working to make sure that there are contingency plans in place, should I ever need them, I feel much more relaxed about things.
Of course, there are still hurdles to be jumped – personally, professionally, and medically – but for that matter, there will always be hurdles. At least for today, though, the hurdles are more my size. And even if I stumble along the way, at least I had the tenacity to show up in the first place.
* P.S. – Check out the first stop on the Women, Work, and Autoimmune Disease: Keep Working Girlfriend” virtual tour over at Rhymes With Migraine. The theme of that post goes really well with my post for today.
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