Tuesday, March 31, 2009
I’m feeling kind of nostalgic for the “old” days, when a medication schedule didn’t rule my life, but I’m also feeling empowered by the fact that now I’m living my life with illness, and my illnesses aren’t dictating my life (for the moment).
So whether you’re a doctor, patient, or an all-around medical aficionado, please submit posts to firstname.lastname@example.org by 11 p.m. on Sunday, April 5. Make sure you put Grand Rounds in the subject line, and include your name and a link to the post in your e-mail.
Thursday, March 26, 2009
I graduated from the University of Michigan in April of 2007 and was set to start the Sociology PhD program in the fall. While I thought that there was nothing to possibly derail this plan, I was very wrong. Throughout my senior year of undergrad, I had repeated strept throat and pink eye infections, bizarre stomach bugs, and the telltale muscle and joint pain – at first only after I worked out – then eventually, the pain never went away.
While I was able to start graduate school in the fall of 2007, my whole world quickly fell apart. I was in pain all the time and had unexplainable symptoms that would come and go in the blink of an eye. I had to go to several different doctors before I was able to find someone who took my concerns seriously…
In April of 2008, I was diagnosed with lupus and rheumatoid arthritis. While I struggled with frequent doctors appointments and medical tests, and not feeling well, I also struggled with what these illnesses would mean for my graduate school career, and more broadly, my life. Simply asking my department for symbolic recognition of the situation and its varied consequences was met with resistance and unease. I felt like I was met with the implicit charge that:
If I couldn’t cut it for any reason, I shouldn’t be here…
This journey has been fraught with failed attempts and missteps. The tangible changes, in many ways, remain to be seen. I know that my situation is unique in that it started while I was in graduate school and that I have a set of very unpredictable illnesses. But should you become a player in this game, or if you are already in it, you probably know, that it is not for the faint of heart.
Still, as I’m sure there are many others out there, as well, I mostly suffer in silence. As my cohort mates celebrated the end of our first year of graduate school last April, I was at the hospital receiving outpatient intravenous therapy. A stark contrast to the 22-year-old, graduate student life I thought I’d be living. It is only a recent innovation that I don’t rush to the bathroom to take my medication five times per day so that no one has to watch me pop pills and wonder why.
There is no doubt that illness is a lonely pursuit. It is isolating. It is a litmus test for friendship. And most of all, it is exhausting to wear the brave face all the time and have everyone around you be none the wiser. This is especially frustrating that when you do ask for help, you are met with ambivalence, and sometimes, downright nastiness.
It is ironic that those of us who are sick and tired, who are the most vulnerable, are expected to lead this fight on our own. As sociologist C. Wright Mills wrote in 1959:
Men do not usually define the troubles they endure in terms of historical change and institutional contradiction [...] They do not possess the quality of mind essential to grasp the interplay of man and society, of biography and history, of self and world. They cannot cope with their personal troubles in such ways as to control the structural trans-formations that usually lie behind them.The truth of this matter hinges on Mills’ words. This personal problem, of illness and disability, is in fact, very much a public issue – even for those of us with invisible illnesses and disabilities. And until it is seen as such, the individuals that sit before you tonight will daily have to battle in order to gain the recognition and help they deserve.
As I expressed earlier, while individual action and change are important, the difficulties incurred by Katie, Walt, and I point to much more deeply imbedded, systemic issues, issues that will not be surmounted by individuals alone.
There are many matters that still need to be resolved. People are often hesitant to attach labels to themselves or to be open about such issues. While I have become adept at talking about my illnesses, this is, in fact, the first time I am publicly disclosing them in a forum such as this.
At the heart of the matter, is often that people do not stand up for issues that do not directly involve them. As journalist Richard M. Cohen wrote in Strong at the Broken Places: “Know this. Ninety million Americans battle chronic illnesses everyday. Welcome to your future.”
While this statement may sound harsh and threatening, it is the truth. Although chronic illness and disability may not be on your radar screen today, they may be your reality tomorrow. That was the case for me. While disability issues were in the back of my mind, I never expected them to become “my” issue. But now that they are, I hope that with the help of others, something good can come from my experience.
What is truly needed, then, is a network of students who are disabled, chronically ill, or are aware of the importance of such issues, not only to those who are directly affected, but to the University community as a whole. We all deserve a living, learning, and working environment where we feel accepted and appreciated, and where our voices are heard, not because we are alone, screaming at the top of our lungs, but because there is a chorus of voices harmonizing together.
Wednesday, March 25, 2009
Life as of late has become increasingly complicated. I don’t usually have difficulties with expressing how I’m feeling or talking about what is going on with my life on my blog. But the past several weeks, I have been pretty busy and feel like I’ve been bad at blogging, maybe even bad at everything.
And illness isn’t even a factor. No, I take that back…Illness is always a factor, and that might just be part of the problem.
I feel like I’m being pulled in a thousand different directions; in order to do everything and please everyone I feel is worth pleasing, I can’t take care of myself (or I can’t be sick).
My “To Do” list keeps growing longer and longer, and less and less is getting crossed off at the end of the day because I’m exhausted and in pain. Here’s just a smattering of what needs to get done over the next several months; hosting Grand Rounds, several doctors appointments and blood work, arthritis walk, DePaul conference, teaching my own class, studying for my preliminary exam, presenting at the American Sociological Association conference, taking and passing my prelim…And oh yeah, did I mention eating, sleeping, and breathing?
And all I keep thinking is:
Can I hold out and not flare until August?
Can I hold out and not flare before tomorrow?
I’ve had several serious conversations with my mom recently about possibly leaving school. I don’t necessarily want to do that, but yet again, I find myself at a place where I feel like I can’t be in graduate school and stay healthy. I can’t do everything I want to do, plus attempt to have a life outside of school, plus take care of myself.
That’s the whole point of what I’m trying to do, advocacy-wise, right? I’m trying to help other students stay in school while coping with illness. But what if that’s just not possible? I’m not a quitter. I live for people to tell me that I can’t do something so I can prove them wrong. But I’m not sure how much fortitude I have left in me.
I keep asking myself:
Do I need a PhD to do what I want to do?
(Do I actually know “what I want to do?”)
How will having a PhD help me or hurt me?
How will NOT having a PhD help me or hurt me?
How bad will I feel abut myself if I “quit” school?
Aside from illness, there has been another situation in my life recently when I was very frustrated because in the end, “I had nothing to show for it.” I had come through it, but there was nothing tangible to suggest that it had ever happened at all.
Sometimes it’s better not to reinvent the wheel. Sometimes the status quo is a good thing. Sometimes boundaries were meant for a reason. There are some lines that just shouldn’t be crossed. Sometimes change is a bad thing.
If I’ve learned anything from illness, though, it’s that there are important imperceptible changes; changes on the inside that mean more than any changes on the outside (“literal” changes) ever could. I became so obsessed with proving my friends wrong and giving others the benefit of the doubt that I lost sight of what was really important…me.
So I can only hope that there are changes that have taken place inside of me that I simply haven’t been perceptive enough to notice yet…
Because right now I’m in a place that I really don’t like…And I really only have myself to blame…
I hope this doesn’t sound like a “poor me” post, because it’s not meant to be. This is more of a “gosh, why do I always have to be such an idiot?” post. Because I’m at that point just between “normal” and flare when I feel like I’ve been fighting off a cold/flu-like thing for four days. And I have the power to set things in the right direction. But will I? Probably not…That says it all…
Saturday, March 21, 2009
“I’m fine, and my hips are fine. My false knee is fine. My false hips are fine. Everything’s cooking.”
- Liza Minnelli
Why the title of this post, you’re wondering? Because I think my hips are a metaphor for my life, albeit in a rather awkward and roundabout way. My hips tell me a lot about how I’m doing…
This week was not so good in the health department. I’ve been exhausted and in pain. But the main thing is that my hips have been giving me a lot of trouble. And they seem to be one of the first things to flare up, especially when I overload my already too heavy bag and trek nearly a mile to campus.
The point is, you can carry around excess baggage until you’re blue in the face, but whether your food indulgences go straight to your hips or you’re carrying the wait of the world on your shoulders, it’s always the hips that feel the brunt of it (sad, but true, I know).
We wear masks to conceal are true feelings, and I’ve become rather adept at hiding my pain from others. Sure, there are some who see through it, but it all comes back to the hips. One friend of mine told me that she used to look over at me during class. If my legs were crossed, she knew it was a good day. If my legs weren’t crossed, she knew I was in pain. Pretty ironic, huh?
Something that surprises me is how little we really know about the people in our lives, whether it’s because they haven’t told us or we haven’t bothered to ask (or have been afraid to). But when you’re walking slowly and can’t keep up, or you’re limping, it’s pretty obvious to others that there’s something going on…
Yes, I have a love-hate relationship with my body; I hate to love my body, and my body loves to hate me. And I am trying to work through this, I really am. But yesterday morning was one of those times when I pushed myself to workout, and now I am completely regretting it.
So, maybe the saying shouldn’t be “read my lips,” but rather, read my hips. On second thought, maybe not…
At least for me right now, it seems like it’s all in the hips…
Friday, March 13, 2009
My tips aren’t quite as practical as Maria’s, but I wanted to offer up a different set of points. So here are some tips for my readers:
Talk the talk and walk the walk
Especially when you are young and chronically ill, it’s hard to find your “authentic” self. But this is a necessary step in being able to live well with illness. So be true to yourself, your desires, and your dreams. But also be honest with yourself about what you can and cannot do because of your illnesses.
You can cope your own way
No one has the right to advise you on how to cope with illness. Now, I’m not advocating negative coping behaviors like abusing alcohol or drugs. But I do think that if your coping mechanisms aren’t bad for your health issues, you should certainly do whatever works for you. Me? I cope by reorganizing drawers at three in the morning. Like I said, whatever works (and is not detrimental to your health).
The point is, if you aren’t listening to the signals your body is sending you physically and/or emotionally, you aren’t going to be able to help (even possibly save) yourself. You are the person who knows you the best, so take some time and listen…
I find that I’ve been talking about my health a lot lately in diverse settings. The one thing that has come out of this is telling my story. That seems like a difficult and daunting task to me. To actually sit down and write something coherent and cohesive. In reality, there is value to stepping back and looking at the situation as a whole, rather than the everyday minutiae. I’m not saying those things aren’t important, because I blog about them all the time. But sometimes stepping back and looking at the broader picture is a necessary task in order to keep moving forward. (It also makes the story a bit more balanced i.e. not all positive or all negative)
Treat yourself like you treat others
Usually it’s the other way around – “Treat others as you would like to be treated” – but the truth is, many of us, myself included, treat other people much better than we treat ourselves (even if only in a metaphorical sense).
Be your own health advocate (but have someone else on standby just in case)
Many of us know, or come to understand after experiencing illness, that the best person to fight for you is yourself. This is counterintuitive, that the sick and tired have to advocate for themselves, but that’s how it goes.
Especially as a young and chronic, it’s hard to imagine being incapacitated to the point of not being able to make my own health decisions. But unfortunately, this is something that can happen to anyone. I’ve been thinking a lot about who I want my health advocate to be, and I’m inclined to have it be someone who I don’t have strong emotional attachment to, so that they can make the most rational decision possible if called upon to do so. Although I have yet to figure out exactly who the person for this job is, I think we can all agree that chronic illness is unpredictable and you have to be ready for anything.
The point of all these tips revolves around a common theme – respecting oneself and caring enough about oneself to get the care you need and deserve are absolutely essential in living well with illness. It doesn’t matter if you are new to the club or a veteran, before you can really get organized health-wise, you’ve got to examine the bigger picture of your life first. As the title of Maria’s, blog post suggests, you’ve got to tie up those loose ends…
I urge you to check out my post, Building A Better Me, Part 1: Being A “Smart Patient” Matters*, which is the first post in a blog series that I’ve started. There I offer a more practical list of tips for dealing with illness.
I also urge you to add any advice that you have for others as a comment to this post, or post advice on your own blog. So much about the virtual community of the chronically ill is to help each other learn and grow.
Tuesday, March 10, 2009
Well, actually, we just sprang forward, but aside from the fact that I forgot to change my clock (until I saw my cable box Sunday morning and realized I was an hour behind) and am upset that I lost an hour of sleep, I’ve been thinking a lot about if I could turn back time, to what part of my life would I pick to go back to? (And yes, that entire paragraph is one sentence… and I’m proud of it!)
Basically, this comes out of two things that happened to me over the weekend. Saturday morning, I woke up, nauseous and dizzy, with an annoying throbbing going on in my head. No, I wasn’t hung over. It was my friend lupus rearing its ugly head. It was one of those times when all you can do is hope to throw up or die. Really, it was that bad. After having to lie on the couch for nearly three hours, I finally started to feel better. But I’m still not feeling great. I think the change in weather has a lot to do with it. Rheumatoid arthritis is not fond of the cold of winter, and lupus is not fond of the humidity of spring and summer. So let bygones be bygones (I just can’t win)…
This incident really frustrated me, though. I’m back on my medication schedule and am doing the best I can, but that still isn’t good enough. This type of thing happened almost on a daily basis last year before I was on medication. But it hasn’t happened for a very long time. And I absolutely hate not being in control of my body!
Overall, Saturday was a pretty bad day, trying to get my emotions in check and trying to catch up on all the work that I’m super behind on. I was having a minor (maybe major) freak out and my friend suggested that we go to the gym.
I haven’t been to the gym in well over a year. I’m self-conscious about my body… I’m self-conscious about everything. When I work out, I do a video in my apartment. Two miles in half-an-hour seems pretty good to me (and no one has to see that I can’t lift my legs and arms high enough). But I desperately needed to relieve stress, so I went to the gym. And I survived!
I was pretty despondent Saturday. That’s the sickest I’ve felt in awhile without it being self-induced. On the other hand, though, I was pretty amazed that I walked on the treadmill for 35 minutes (2.5 minutes of which I jogged), and then I did an elliptical-thingy for 15 minutes. It was nice to push myself in that way.
Pretty ironic, huh? In the morning I felt like I was going to die, and then I felt well enough to workout more than I have in a long time. But there never seems to be a victory march that isn’t overshadowed by illness. The constant cycling of these diseases, especially within a 24-hour period, is what really gets to me (both physically and emotionally). I’ve really tried to stay positive lately, but sometimes that’s incredibly difficult.
If only I could go back to the day before I got sick…On the other hand, I’ve learned so much about myself in the last year and a half. And maybe more than learning about myself, I’ve learned what I don’t know about myself – and these are realizations that I never would have come to otherwise. I would have been stuck in the same old box, living the same old life.
Being sick and having a body that pretty much does what it wants when it wants sucks. But there are a lot of people I know that are really emotionally detached from their lives, and they aren’t really happy people. And they are healthy. It seems to me that we always want what we cannot have...
The point is that I can’t be stuck ruminating about the past and the things I can no longer do. And I can’t always be waiting for the future to come, hoping that there is something better down the road. I have to live in the now. I can’t undo the past and I certainly can’t predict the future.
The experience of illness is fraught with moments of lurching forward and then being catapulted back to the reality of a situation, which has the upper hand in the control department. This is undeniably difficult. I went a little over two months feeling pretty well. And then I’m knocked out with a punch to the gut. It’s not a good feeling, but I don’t really have much choice in the matter, do I?
Thursday, March 5, 2009
As I’ve counseled several friends recently in various aspects of their lives, it feels good to finally be able to give advice to others. I feel like I’ve had the monopoly on being the advice getter for a while now, so to be in the position of advice giver feels pretty good. And I think this is key. Sometimes we need to look at our situation from the outside in order to gain the clarity we need – or we need to look at the situation of others in order to look more positively and compassionately at our own.
From Patient to Doctor (Sort of)
I think sometimes we need checks on ourselves. Not like, “Oh, am I still breathing?” kind of checks, but rather, “Am I doing the best I can?” kind of checks.
Being chronically ill, rarely leaving the role of the patient, holds a person accountable. Every day, I am accountable to myself: Did I take my meds? And did I take them at the right time? Am I eating well and/or enough? Am I getting enough rest?
It is certainly tiresome and annoying to never turn off that voice inside my head that cycles through all the things I should be doing to be as healthy as possible. It is frustrating to have to be that disciplined. Because let’s face it, when you’re chronically ill, staying healthy can be a lot of work. But it is also good to have built in checkpoints for myself. When dealing with a set of unpredictable illnesses, it is often easier to deny having any control at all than to take responsibility for the small aspects that I do have control over.
Running around for eight hours on two Pop Tarts and coffee, for instance, is not smart. And at the end of the day, I pay for those kinds of lapses in judgment. I can’t push my body to the breaking point anymore. If I push, my body pushes back at me even harder.
And after round five*, I’m down for the count.
From Insider to Outsider
I’ve gotten used to the fact that only the people that truly care about you ask how you are doing. And it’s hard when you’re chronically ill, because that question is kind of a red herring. But when someone actually offers real compassion and concern, it really strikes a cord. And it is difficult to see the pain and anguish on someone else’s face when they really want to help, but there’s nothing they can do. If I could reach out to those people, I would tell them that just being there is enough. Because it so rarely happens that a person asks how you are doing in more than an obligatory fashion.
It’s hard when someone is asking how you are and they are standing face-to-face with you expecting an honest answer. Trying to be tough and fighting back tears, it seems the only real answer I’m able to give most of the time is I’m okay. I’ll be fine, even when my whole body hurts and the pain is so intense that I can’t think about anything else.
And I can imagine that when I do end up in a serious, long-term relationship, it will probably be much harder for that person to deal with my illnesses than it is for me. I think at this point I have a pretty high pain threshold, although I do tend to get cranky when I’m really in pain. But for a person to have no other choice but to sit idly by when a situation seems to demand action is difficult for anyone.
I know this because I’ve heard that same despondency in the voices of my parents many times. Just tell me what I can do for you. Isn’t there anything I can do? And usually, there isn’t. It’s hard to live in a world where few people are willing to help, show care or concern, and those who are and do, can’t really do anything. I feel the pain of that, too. And I definitely wish that I could spare them that pain.
From Doctor to Patient
I recently spoke with a doctor I know who is dealing with illness. This isn’t one of my personal physicians, so it’s not so weird. But I definitely felt bad, as this person expressed finally knowing what it was like to be a patient, and not liking it very much.
In some ways, I almost wish that at some point, all doctors could experience this. Not that I wish sickness on anyone, but I wonder how care and demeanor would change if doctors knew 1/100th of what it was like to be a patient.
Unfortunately, I guess I’ve gotten so used to being sick, that I forget that people can potentially go their entire lives without having a major health crisis. It seems unlikely, but I guess it does happen. So it definitely makes me wonder how many doctors have actually experienced what it is like to be a patient, especially in a long-term scenario.
I wonder: Do doctors get better care than we “non-physician” patients do? Are doctors’ bad patients or do they actually comply with the orders they are given by their own doctors?
It’s difficult for me to imagine how things would look if the situation was reversed and doctors became patients, but I can only imagine that it would give a whole new meaning to compassionate care.
From Patient to Care Giver
Lately I’ve been having difficulty managing my health. There are a lot of reasons for this, but it strikes me as odd because if I was a caregiver to someone else, I certainly wouldn’t shirk, or at least I hope I wouldn’t, on taking care of that person.
If it were an immediate family member or any other important person in my life who was ill, instead of me, there would be no decision about what would come first in my life. The priority would be obvious and straightforward (hopefully). Even if they didn’t want me to, I would probably try to drop work or school (or whatever) to be there for that person. So why can’t I do that when it comes to my own health? And why do so many of us push through, even taking on additional care giving tasks along with being chronically ill, yet so often put our own health and well-being at the bottom of the list?
- George Washington Carver
Because the role of being a patient is ever-present for those of us who are chronically ill, I think we tend to forget that we are held accountable for other aspects of our lives, as well. As people, we are held accountable for our attitudes. No matter how little control we have in our lives, the one thing that we always (for better or for worse) have the power to control is our outlook on life. Because the truth is, doctor or patient, insider or outsider (etc.), we are the makers of our own happiness.
* how many times a day I take meds...
Monday, March 2, 2009
- “Searching My Soul Tonight”
(Theme Song From Ally McBeal),
A lot has been going on in my life recently; broad, abstract questions arising from small, specific (hopefully isolated) incidents. I know, that makes about as much sense as I feel my life does right now…
I was off school this past week, which was nice. I took a trip to see a friend that lives three hours away by train. I was excited about getting away, but came back exhausted and drained, which was my own fault. Between hormones, the weather, late nights, a wacky medication schedule, and train travel, it was just too much for my body to handle. I’m definitely flaring.
This chronic illness routine gets old really quick. It wasn’t so much that having to pack all of my medication was a pain, as much as I was surprised at how quickly I was able to forget that I needed to be taking it. Truth be told, my medication schedule has been pretty thrown off for about the past month. But it’s always sobering to realize what I would feel like without it. And so, while I was only going to be away for about two and a half days, I decided that it only made sense to pack a weeks worth of meds, just in case.
Being chronically ill definitely puts a damper on being spontaneous, and maybe that’s why I feel so ill at ease making plans not that far in advance. And maybe that’s why lately, any opportunity to be spontaneous is desired greatly and often regretted afterwards.
While I recounted for my friend some of the exploits of the past six months (late nights, tequila shots, etc.), her response was something like most of that doesn’t sound like you at all. Lately, I wonder…would I know a “me thing” if it bit me in the ass?
This profound crisis of identity that has been going on for the past year or so is really bad. And it needs to end soon.
When I think about the fact that I’ve only been in graduate school for a year and a half, and that I’ve only been dealing with illness for about the same amount of time, it’s sobering. It feels like decades have gone by. Not that I’m wishing my life away, but the sludge could sure move a little bit faster. When do I get to the good part?
Clearly, what I have come to realize, is that graduate school is not the place for self-exploration and self-understanding, not the place for finding oneself, and not the site for teenage rebellion that’s happening a few years too late.
This is not the time to “feel your wheaties” (of any variety). Those who party harder than they hit the books are shunned, seen as slackers. All that fun is kid’s stuff. That’s for college, not for graduate school. Even so, if you aren’t 100% committed, for whatever reason, there is definitely a learning curve. The thing is, getting into graduate school makes you think that the next five, six, or however many years it takes you to get a PhD are set. But sometimes, life has other plans, and it’s often difficult for graduate school to accommodate massive life occurrences, such as illness.
And maybe that’s why those of us who become academics do. While we thrive on asking tough questions about the world, we never seem to have the time or energy to ask tough questions about ourselves.
And maybe that’s what has been so difficult about the past year and a half in dealing with graduate school and chronic illness. The lingering question is not so much Why me?, but rather, Who am I and how did I get to where I am today? And does my current direction make sense with the curve balls that life has thrown at me?
Lately, my whole world is off kilter. I went to the bank recently and put money into an account that I had closed several months ago. Luckily (and surprisingly) getting the money into the right account was an easy fix. But come on, where is my head?
I’m rational and practical. I like order in my life. I think I’ve started to worry that I’m always the downer, the party pooper, the one sucking the fun out of life.
All this is to say that I feel like I don’t really know who the heck I am. Sometimes I feel like a chameleon, adapting to the wants and needs of those around me, and not to my own needs, wants, etc.
When I flare, I tend to retreat. The other day is a good example. I was flaring and feeling a bit off, so I never got dressed or left my apartment. But the truth is, I have dragged myself many places for others, only to realize that after, I’m even more tired and drained than I expected to be.
It’s difficult to try and explain to my friends how I feel on a day-to-day basis, especially considering how quickly symptoms come and go. And no matter how hard some of them try to understand, it often seems easier for me to follow their plans than try and explain why they won’t work for me.
On a slightly more positive note, I am excited to say that the paper I submitted to the American Sociological Association conference was accepted to the Disability and Social Life section, which is very exciting. But the thought of having to fly out to California in August for my first professional conference and presentation, and all of the illness-related complications that could ensue, is particularly daunting, especially considering what a shock to my system two days of traveling through Michigan was.
The whole point I’m trying to make here is that I’m not living my life realistically right now. At some point, exactly when I’m not sure, I decided to try and stick it to my illnesses and live the life I would be living if I wasn’t sick. But that obviously doesn’t work. I’m not sure when I made this shift, but I do have to wonder about the following: when does the power of positive thinking become denial?