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Perhaps the most difficult thing about living with a chronic medical condition in this country is the rising cost of healthcare. I have never counted myself among those less fortunate who do not have health insurance (with the exception of my first few weeks at UW due to a bureaucratic snafu). Yet, the financial fall-out associated with all of the charges my current and previous insurance carriers refused to cover makes it very difficult to maintain even the most basic standard of living on a grad student stipend (which is more than adequate for everyone else).
My current monthly payments for past medical expenses come to just under $400 per month. Add to that this month's unexpected healthcare costs (again, items that my insurance wouldn't cover) of $487 and that's more than half my take-home pay before I even get to covering rent, food, and utilities! Millions of Americans are confronted by this reality each day and there is little doubt that the stress which results from having to live this way exacerbates their symptoms. How are people supposed to be able to take care of themselves when they are forced to choose between housing, food and healthcare? Most of us associate senior citizens with this plight but medical debt favors no one demographic over others.
One third of young adults are currently uninsured in this country. Although they are the least likely to become seriously ill or injured, readers don't have to look any further than the borders of this blog for an example of a young adult who became seriously ill after two decades of good health (who gets pancreatic tumors at 22?). If it can happen to me, it can happen to anyone. Most people unfortunate enough to get sick as young adults are forced to file for bankruptcy simply because they are too old to have anyone else bear the burden of their financial obligations and too young to have accumulated the level of savings required to insulate themselves from financial ruin (on entry-level wages, no less).
It's looking less and less likely that true healthcare reform is on the way. I sincerely doubt that a bunch of fat-cat politicians in Washington have the capacity to understand just how urgent this issue is and how it will benefit this nation as a whole. People with chronic illnesses are not deadweight and no one is looking for a handout. It is impossible to measure how much productivity and homegrown talent is lost to the overwhelming cost of healthcare. How many people are forced to put their lives on hold even after they recover from illness because they cannot recoup the costs of their medical bills? Medical debt is, by far, the leading cause of bankruptcy in this country. How can we justify playing Russian Roulette with our collective future like this? I think anything less than swift, decisive action is simply unforgivable. This country needs affordable healthcare now!
For those living with chronic medical conditions, setbacks are always though. They serve to remind us that no matter how well-controlled our symptoms are, we won't ever be "cured" of our conditions. Last week, I experienced several visitations by my previous life; the one I had before coming to Madison. I was forced to choose between accepting one fate and pressing on to forge another from the ashes of its less desirable twin.
Following all the medical appointments and tests I've had to endure lately, I returned to the lab (finally) free from interruptions to pursue my research at full tilt. Slowly, I began to notice changes. Beginning at around 2pm each day, within an hour of eating lunch, a gnawing ache settled into the depths of my abdomen and slowly began to grow in intensity. Two hours later, the pain peaked and consumed nearly all of my attention, making it almost impossible to focus on my work. Over the next 4 hours, it would fade until it was gone, just after I arrived home. At first, I thought the pain clinic I went to had made some sort of mistake during the pump refill I'd had just the previous week. They reduced the concentration of Dilaudid I was receiving, but not the overall daily dose. This means that my dose should have been the same but that I would come more frequently for refills (a measure meant to preserve the drug's potency and reduce the risk for spinal granulomas). I suspected that perhaps a miscalculation was introduced during the telemetry stage of the refill and that my pump simply required reprogramming.
However, when I went back to the clinic, medical staff did not find any errors and opted to simply introduce a bolus dose that to be given at 1pm each day (before the pain had an opportunity to take root). As it turned out, they did the right thing. You see, for the first time since starting in the lab, I was able to work at full capacity. I was on my feet more, at the bench longer, and greater physical demands were being placed on my body each day. Most people would simply begin to feel tired under these circumstances but in me (no longer accustomed to working 60+ hours per week), damaged nerves rebelled once I pushed past the threshold and they were screaming for relief. After the bolus dose was added, I was able to work an additional 6 hours before my pain returned. Typically, by that time of day, I have either returned home or am at least in transit. Certainly, this means I won't be able to work later into the evenings without a second bolus but still, it's an improvement over what I would otherwise have been able to do.
\Most of the time, I don't think about my pain. Over the last few years (since getting my pump) I've worked hard to create a new foundation for my personal identity; one divorced from my identification as a chronic pain patient. Since I now spend the majority of my time being "Heather the scientist" and not "Heather the sick person", I have begun to settle into a role which would have me behave as a person who does not have chronic pain. I was lulled into a false sense of security so to speak, and forgot my limitations.
There is also a part of me that feels like I still have something to prove. I know from past experience that there are those within my chosen profession who believe that people like me have no place in science and that I was meant to subsist on disability for the rest of my life. While it is true that most chronic pain patients find themselves rendered unable to work at some point, most of those people are in that situation because their pain is not well-controlled.
There is a pervasive philosophy in medicine, no matter how misguided and destructive it seems, that we should "learn to live with our pain" since we aren't ever going to be cured, we should do our best to accept things the way they are and try to go on living our lives in their current state. Trust me when I say that a life without purpose is no life at all. There is no quality of life for those who suffer with pain so crippling that it prevents them from working.
The last week has been my busiest yet and all I really remember about the last few days are the experiments I was trying to cram into them. Now that I've gotten comfortable with amino acid isotherms, I've turned the bulk of my attention towards mastering lipid adsorption isotherms. My first round of experiments ended disasterously when a volumetic flask I used to make one of my solutions got contaminated somehow, resulting in an impenetrable, inky-black semi-solid substance that was of no use to me (and encrusted my test tubes like char). In an attempt to make up for lost time, I launched a series of parallel experiments which, under normal circumstances, I would have done sequentially. So far, so good; no more black muck! I haven't finished analyzing all the data yet, but I hope to have everything plotted in another day or two-- so long as I don't get interrupted again. As it is, I can't completely move forward with my lipid experiments because my PI is more interested in my work with amino acids at the moment. She is always coming up with extra things to add and new things to try. Sometimes, the results are fuzzy enough to warrant a redo but thankfully, that hasn't happened too often. Today, we had to place this project on hold because we ran out of a reagent called Ninhydrin; can't run assays without it. It's probably just as well anyway since I've been falling behind on my reading and could probably use a few days at my desk (yeah, right! Not with lipid experiments I can still do!).
I must say though, that I'm starting to feel bad about aspects of my personal life that are starting to get swallowed up by research. I can't remember the last time I visited my own website, made any jewelry, or chatted with my friends online. Someone even approached me to express an interest in doing some research together and I still haven't found time to get back to him about it. Even my blog writing is suffering as more and more data screams for analysis while I'm sitting on the bus (where I write my blog entries). I also keep forgetting to take care of certain personal errands like getting my prescriptions renewed or returning borrowed items. In some ways, I feel like I'm starting to lose myself. One of my old professors once stressed the importance of having a life outside of graduate school. Since I didn't really have much of a life during those years I was sick, I sort of got used to going without a lot of things. I couldn't afford to go out or have hobbies and I barely had enough energy to get through the day, let alone do anything extra.
So... Here I am sitting at UW Hospital having even MORE of my time wasted! Apparently, whoever scheduled my CT-scans screwed up royally! They told me that I was going to have them done at the hospital and then turned around and had them scheduled for Research Park on the other end of town! Seriously! What is wrong with people? Haven't they cost me enough time? They suggested (when I checked in at UW Hospital) that I could still make the appointment at my original location if I drove straight over.... Great! So whose car can I take to do that? Yours? Why does everyone assume I have a car? If I wasn't still paying out the nose for past medical expenses, maybe I could have bought several cars by now!
Since this time-waster was the pain doc's bright idea in the first place and then staff created this additional burden... At least the receptionist at UW Hospital knew what she was doing and squeezed me in between the patients who were scheduled properly. I'm just doubly frustrated because my PI added more items to the (already massive) to-do list and as it was, I had no idea how I was going to finish everything. She didn't realize I had medical tests scheduled for the following day and gave me another day to get things done but still... I'm trying to work around another student's projects as well so it's not a matter of simply diving into my work at the drop of a hat; it takes an immense amount of planning & coordination.
Last night, I stayed up late to run some calculations for the new experiments and find a way to squeeze them in between the ones that were already on my agenda for today, tomorrow and the day after that. I'm sure my lab mate (who I share a lot of resources with) isn't particularly happy with me right now for trying to take over the lab. I'm hoping he had other things planned for the next few days--like data analysis, which can be done on his own laptop. Meanwhile, I'm stuck waiting here for a space to squeeze into. The only other alternative would have been to reschedule and that would definitely have made a much bigger mess than we already have! I figure I’d already lost time today so we might as well get it over with.
You can be sure that the next time a doctor wants me to take time from work for tests (when I'm asymptomatic), I will refuse on the grounds that my work has suffered enough! It's like they're trying to slowly suffocate my reputation in the lab before I even finish my first semester! Sure, they probably had their reasons but if my academic career dies, nothing else will matter. I live for science and if I'm not allowed to do it, if I'm forbidden to be myself, then all that hard work and preventative care will be for nothing. Besides, there is a large part of me that feels like I have something to prove.
Most patients in my situation leave their professions and never return. The general public tends to look at chronic pain patients a certain way and I want to completely dissolve that stereotype. Furthermore, I think it's important to give hope to others suffering from chronic pain. I want to show people that it is possible to have it all; that you can successfully shuffle medical responsibilities, professional obligations, fiscal crises and still find time to have a social life. Although, I have to say, that last item may be somewhat of a stretch. Between mounting expectations, a growing workload and constant interruptions, I'm finding it difficult to find time for myself.
As it is, I write all my blog entries on my smartphone while I'm on the go (usually on the bus or in waiting rooms). I never write from a desk. That's why there are long gaps between posts as well. I'm lucky if I can log in more than once a week (to post multiple entries at the same time, written on different days). So if you happen to notice lengthy periods where the blog isn't getting updates, you can be fairly certain that it's because I have too much work to do and too little time for my personal life. I'm also starting to worry about AARI's upkeep. I haven't had any time for the website, fundraising, or advertising lately. My poor volunteers haven't even gotten their stuff yet! I keep hoping things will settle down by "such-and-such-a-date" but then it never does...
Well, I guess that's the end of my writing for today; just lost one arm to an inconveniently-placed IV.
My resentment for having to take time away from research for medical appointments is reaching an all-time high. I have all these plans for getting back on schedule (yes, all the interruptions have put me behind), but I can't seem to find enough time (where others aren't using the equipment I need) to actually execute them! I just had my pump refilled today (getting there & back plus all the waits took all afternoon) and tomorrow morning I get to spend the whole morning at UW Hospital for CT-scans (yes, more than one) so I won't be able to start anything in the lab at all until I'm through there. Since most experiments take several consecutive days to do, I already know that the only hope I have of getting anything done this week is to sacrifice the weekend entirely. After all the running around, I could sure use a proper rest!
On top of that, there was talk at today's appointment of having me come in to discuss the films being taken tomorrow too! Don't these people realize I have to work? I don't have time for all this! How ridiculous is it to sacrifice an entire afternoon (a whole day's experiments) just to be told you're fine and the films are clear? Sheesh! I keep having to explain to everyone that I'm completely reliant on public transportation and can't just pick up and go to the other end of town whenever the mood strikes me. None of my medical appointments are within walking distance of the lab so I have to coordinate bus schedules (and my research) pretty far in advance. It's almost like they EXPECT to find trouble. I say, why poke your nose in the hornets nest?
I just don't want my PI to be disappointed when she comes back (she's away at the moment). Also, I don't want to be disappointed in myself. My undergraduate advisor always told me that I was too hard on myself and my lab mates seem fairly impressed with the speed at which I picked up new techniques but still... I can't seem to find a way to put that "to-do" list (my PI left for me) out of my mind. Maybe I'll feel better once I reach the halfway point... And I did lose a few weeks in the beginning to training so maybe I'm not as far behind as I think. Sure, I'll just keep telling myself that...
Here's a funny pic to cheer us up on a crappy, crabby day! Who doesn't like cute, chihuahua puppies?
Last night, I read a short story called, The Spoon Theory by Christine Miserandino. Although it was originally written as a way to describe living with lupus to one of her healthy friends, it is just as applicable for anyone living with a chronic medical condition who finds themselves lacking the words to describe what daily life is like. To be honest, this piece actually brought me to tears. The beauty of this story is in it's simplicity; those living with serious medical conditions have to budget so much more than just money. There is never enough of anything so we are forced to go through life in "disaster mode" full-time.
Symptoms chew away at our physical resources, excess medical expenses dissolve our assets, the lack of understanding from those who are healthy eats away at our social support systems. Every single accomplishment, no matter how small, derives from extensive planning and preparation because despite our best efforts to stretch our limited resources to the fullest, we won't ever be able to accomplish everything we set out to do each day. Activities the healthy take for granted require Herculean efforts from those who are ill and so the battles we wage against the challenges of daily living go unnoticed.
I consider myself to be locked somewhere between the worlds of the sick and healthy. Before I got my pump, every aspect of my daily existence came with a cost. I had to decide whether to eat or ameliorate my pain. I had to decide whether to go out to lunch with my colleagues or cover the co-pay on my prescriptions. I had to decide whether I would take work home with me in the evening or go to work the next day. I never seemed to have enough of anything required to cover the most basic life necessities. Going without things considered by most to be "bare bones minimums", meant that I eventually grew accustomed to a life of deprivation.
Even after I got better, I still couldn't bring myself to emerge completely from "disaster mode". I plan my experiments at least a full week in advance (back-up plans included), I keep all of my workspaces in a highly organized state (can find anything I have in under 10 seconds), and before even coming to Madison, I had a list of concerns a mile long which centered around issues such as whether I could actually afford to move here and how much medical insurance should I purchase until UW's policy kicked in.
I chose my current residence on the basis of economics and proximity to the UW Hospital. I never buy anything that hasn't been on a list for at least a week and if I can't eat, cleanse with, or use an item for work, I don't buy it. In the event of a sudden financial crisis (i.e., surprise medical bills), I know what foods to slash from my grocery list and how to my juggle accounts in order to keep all the bills covered. I could grab every item I can't imagine living without in under 30 seconds if a tornado siren ever woke me in the middle of the night. I even have supplies so that in the event that I get really sick (to the point that I can't keep anything down) and can't get medical care (used to happen a lot), I can sustain my own life for a few weeks (once, I actually had to do this).
When it comes to that last item, why would I ever need to prepare for such a thing? Let me put it this way, you'd be surprised how many ER docs label chronic pain patients as drug seekers and turn them away. Since there aren't any tests to differentiate between addicts and everyone else, mistakes happen and at some point, every chronic pain patient has paid a steep price for it. You see where I'm going with this. I got so used to anticipating catastrophes, that I'm having trouble turning it off. I don't want to become completely carefree and ignorant of the risks around every corner-- this could be a very useful skill to have someday if I'm ever fortunate enough to have kids-- but I know I'm investing (wasting) a lot of time and energy that could otherwise go towards more productive endeavors. The evidence of my anxiety is everywhere... I keep everything, from my bench in the lab to the clothes in my closet at home, in a highly ordered state. My smart phone is crammed with lists, appointments and research documents (backups if my laptop ever dies). I keep backups of backups elsewhere and my computer is locked up like Ft. Knox.
I still document everything but I'm not as bad as I used to be. There was one lab I worked in where I trusted people so little, I kept a digital recorder running in my pocket all day long (there is no need here). You're probably laughing but trust me, I had a darned good reason to do it then! The point is that our behavior is shaped by our experiences. I'm gradually learning to loosen up & let go but it's a long, slow process. Maybe by the time I graduate, I will have gained much more than just a PhD... I'll have a sense of normality to go with it.
Every lab has it's own suite of shared equipment. Often these items aren't cared for as much as those designated for use by an individual researcher. Since no single person is responsible for their maintenance, they often get covered in grime, go uncalibrated for extended periods of time, and "mysteriously break" or "stop working all by themselves". Shared items in the Sahai lab are generally well taken care of; perhaps one of the more beneficial side-effects that come with keeping the size of the lab down (fewer suspects when something goes awry). Still, there are other issues from which no lab is immune.
Every member of a lab has their own research projects; each with their own unique protocols and requirements. This means that even though some people may depend on the same piece of equipment, the ways in which they use it may conflict with the plans other people have for it-- whether that means modifying/programming an item for customization or needing it at a particular time for a given length of time (so that others can't use it). People either deal with these situations in one of two ways: 1) Pulling rank (seniority dictates priority) or 2) Trying to work through conflicts by planning in advance (discussing with others who needs what, when and for how long). The latter is generally preferred in this lab and usually, that seems to work fairly well for everyone.
Problems arise however, when someone in the "chain of custody" loses sight of what his/her colleagues need. In my case, someone shut off a high-temperature heat block I was using near the end of one of my experiments (specifically, I was studying the adsorption of DPPC on alpha-Al2O3). Once I realized what had happened, I spoke with the only other person who was in the lab with me that day. Rather than admitting it was an accident, I was assaulted by a torrent of lies and excuses in rapid succession which I found utterly insulting (this person was not a lab member, by the way).
Something many people don't realize about me is that I have always been very good at analyzing microexpressions. As an undergraduate, I also took a lot of psychology courses, where I gained an appreciation for signs of deception (and plenty of A's too). Sure I was disappointed that I'd have to start over because of someone else's mistake, but it was an accident. People make honest mistakes all the time and I can appreciate that. What really bothered me was the fact that this person preferred to lie about it, instead of apologize. It took this person over an hour to say they were sorry and even then, it was very hard for them to resist making excuses.
Test yourself on the METT!
So, if you ever find yourselves in a situation where you make an honest mistake that compromises someone else's work, the best thing to do is own up to it, apologize and offer to make ammends. If you are dishonest about your accidents and someone catches you, they could come to resent you for it and may not be willing to help you out in the future. Research groups really are like surrogate families; everyone is supposed to look out for everyone else. How would you be able to trust your siblings if you already know that they can't trust you? There is plenty of inter-lab rivalry in science already! Who needs bickering from within? Besides anything that raises your lab's status as a whole, makes it's individual members look good too!
