25 July »
The Queen of Optimism asks: “Who has made a positive difference in your life and what did they do?”
In May of 2006 I’d just been released from the hospital, when my doctor asked me to come in for a follow-up. “We think you might have cancer,” he said. “You need to go see a surgeon.” I was unfazed – there are a lot of things worse than cancer, e.g. my life at that point. Still, I made an appointment with the surgeon for the following month. “You almost certainly have cancer,” he insisted. ‘Overbearing’ doesn’t begin to describe this doctor: “We just need to do a test to confirm, and then we’ll take out your colon, give you an ostomy, and start you on chemotherapy. You need to tell your loved ones right now: you could die.”
Like the man said…. when? I hoped soon, but I knew I didn’t have cancer.
Telling the parents was easy: this guy wants my colon for his trophy case, but he’s wrong. Telling the bright spot in my life was harder: so, ah, you know I was in the hospital? Well, one of the doctors is worried I might have cancer, and that would mean some operations, and things could get pretty rough. I didn’t tell her that there was no way I was going to take fucking chemo; I’ve seen that show, and have no desire to star in it.
I had known her for only a few months, and we’d been dating seriously maybe six weeks. No way anybody would sign up for this willingly. I expected her to bolt. I wanted her to bolt. I had to clear the decks so that I was ready for whatever happened, so I would hurt or inconvenience as few people as possible. No tears for me, please: I was ready to go.
She stayed on, though – which was a wrench in my plans. Are you sure you want to do this? “I’ll just see how long I can take it” – which was fair, I suppose. Why are you at all attracted to me; can’t you see I’m a sinking ship? She mumbled something about my Byronic charm; I can only hope that one day medical science recognizes the tremendous damage done by the steady diet of 19th century novels we feed young women in this country, after which you won’t be able to buy Austen, Chopin, or any Bronte sister without paperwork from the FDA.
I was totally serious about dying. I was doing a dismal job at living, and thought maybe it was time to try my hand at something else. Her decision to stick around was a major hassle; I remember thinking that stupid, obstinate woman had no idea what she was doing.
But she stayed through it all: shuttled me to examination room, shared the unsurprising relief that I did not have cancer after all, visited me in the hospital for my next bout, when the doctor insisted I get surgery anyway. She went with me to my hometown, met my parents, and then came back to visit me after the operation. She spent a weekend with my family, while I was back in the hospital with a minor complication.
Three years after that, she made the best decision compromise of her life by actually marrying me. In a church. With legal documents. You know that saying about saving a life in China – how it makes you responsible for the person for the rest of his life? Welcome to the rest of my life, Mrs. Cross.
And on the days when I remember I am a hideous monster, I also remember that she married me, and she could have done better. I find the thought redeeming.
That’s the nicest thing anyone has ever done for me. She kept me from giving up. She kept me here. And I hope someday that she will do the second-nicest thing anyone can do for me: let me go.
Tags: bio, ills, pfam
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24 July »
Act III of the 4/02/2010 episode of This American Life will be interesting to anyone who has heard of helminth therapy to treat autoimmune diseases. It focuses on a man named Jasper Lawrence, who decided to treat his severe asthma with hookworms acquired the, um, natural way. He sounds like a reasonable guy on the program, but his blog makes him seem like a crank. I suppose I’d be just as angry if the FDA had chased me out of the country.
Tags: ills, meds
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23 July »
So last week, I was trying to get my Paxil prescription refilled before I left for vacation – despite virtually no cooperation from my pharmacy.
On Tuesday morning, I called my doctor for a refill. “Sure, we’ll send that in.” A few hours later, I called the pharmacy. “Your doctor just called it in; it will be ready in twenty minutes.”
I gave them forty minutes, then drove to the pharmacy. It was around 2pm. I had a five hour drive ahead of me, and really wanted to get out of town before 3pm so I wouldn’t still be on the road when it started getting dark.
But wouldn’t you know: “Your doctor never called us.” You just told me they called it in. “Nobody here ever spoke to you.” I hit redial on my phone – and the phone at the desk started ringing. “Well, we still don’t have the ‘scrip from your doctor.”
So I called the doctor. In fact, they had not called in the prescription. Fuck me. The pharmacist glowered at me like I was a crazy person, which I sort of was, but I certainly didn’t imagine that goddamned phone call – and why had they never gotten in touch with my doctor in the three days since I called in the refill? Jerks.
I drove to my doctor’s clinic and marched past the reception desk. The tech in the back asked me what I wanted, and I explained that I needed my prescription, and would not trust the usual channels. She told me to wait outside the exam area while the doctor finished with her patient, but I was 60% sure the tech was going to call the cops.
I positioned myself next to the fire alarm pull, just in case the cops did show up and tried to drag me off. Obviously, I wasn’t in a particularly good frame of mind. As I waited, I watched the clock tick off five, ten, then fifteen minutes. In all the time I’d been going to that doctor, I’d never had an appointment last longer than 15 minutes. I decided to give her another ten minutes, and then I was going to raise hell – maybe pull the fire alarm just for the hell of it.
If this was my cholestyramine, I probably wouldn’t have been upset. But it wasn’t – I was trying to get my anti-depressant refilled. And since it’s pretty well known that going cold turkey off these drugs has nasty consequences, I just don’t see why getting that scrip filled was not an urgent issue for all concerned. It occurred to me that I could just start shooting people (not that I had a gun) and plead temporary insanity; I had an airtight case.
But at last, five minutes before my deadline, the doctor appeared. She was very sweet and patient and understanding, even though my homicidal fantasies were probably immediately visible to trained eyes. “We’ll call that in”. Actually, I’d rather leave with paper in my hand. “We can do that.”
I got the scrip filled in the downstairs pharmacy, and headed out: 3:30pm, just barely not so late that I missed yet another day of vacation. Even without taking any pills, I was very much relieved and pacified for having them with me.
Incidentally, I’m never going back to that pharmacy again. It was a CVS: I’ve heard horror stories from friends about the chain, but never had any problems myself. Until now. It’s not just the sheer incompetence of that particular pharmacy, but the bullshit attitude of the pharmacist that I found so off-putting. One of the things that I just hate about my illness is that it so often puts me at the mercy of such cretins. One day, those five minutes will run out – and then I’ll be free.
Tags: bio, ills, meds
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13 July »
I am supposed to be on vacation this morning, headed down to Florida for a week. Instead, I am sitting at my computer, waiting for my pharmacy and my doctor to get their shit together, so I don’t have to go cold turkey on my Paxil, and end up a homicidal maniac burying his victims in the sugar-fine sand of the Florida beaches. Not that I’d be the first to do so.
My massive inconvenience is apparently your gain, insofar as reading my soul-crushing bildungsroman counts as a gain. Anyone actually following the adventures of young Wesley Peary will wonder: why so long since last time? The problem was that I discovered the chapters were appearing in my search results, which made search useless for anyone looking for actual information. So I decided not to put up any more chapters until I could get that problem resolved, and it took me until today to do so: thank you, Jonathan Dingman.
In the meantime, I meant to flag this story from the NY Times, which asks whether patient memoirs are worth reading. Obviously, I have concluded that a straight-up memoir isn’t worth writing, and for good reason: the events of my life have not happened in the right order to be compelling reading. Instead, I’ve condensed more than ten years of my life into a single year of narrative, which ends up being entirely true to my experience, even if not strictly factual. (I even get to be more candid, since I can always deny anything that’s too embarrassing.)
And indeed, the only reason I can justify writing the horrible things I write is that they are, at some level, absolutely true. Too often memoirists try to tie their lives together, to package them and wrap them in meaning, so as to justify themselves and their work to the audience – with the result being too pat, too easy, too comforting. Fiction requires no such defense; my only obligation is to be as true to my experience as I can.
So I now have through Chapter 40 available: if you are just getting started, start here. Otherwise, Chapter 32 was the last chapter I posted.
I’ve also uploaded Chapters 41 through 45, and scheduled them for publication next Tuesday. I should be still on vacation, or fleeing from authorities, depending on whether I get that prescription filled. In any case, that should put me ahead of the ball, and with the technical problem fixed, I should be able to upload the rest of the chapters fairly regularly through the rest of the summer. Thanks for reading.
Tags: LOM
1 Comment
12 July »
For this week’s PFAM, Leslie asks… “What have you done (or what do you aspire to do) in spite of illness?”
When I was first diagnosed, my doctor told me I had to take it easy: too much stress would make me sicker. That meant no sports, no hard classes, etc. So I stopped going to crew practice, and dropped all but a couple of my honors/AP classes in high school. Big mistake – I was miserable.
The class thing was done, but later that year I started going back to crew practice. Guess what? It didn’t make me worse. And the next year, I started college off with a courseload full of honors classes. It didn’t make me worse. And after two years of that, I transferred to one of the best schools in the world, and was still on the crew team – and it didn’t make me worse.
Point being that a lot what I thought was illness keeping me from doing things was in fact other people keeping me from doing those things. The only thing I really wanted to do before I got sick that I haven’t been able to do is join the Air Force, but to hell with that. I’m so near-sighted, it’s not like they’d ever let me fly, and I discovered that I have a serious allergy to authority figures anyway.
Otherwise, I’ve had a life that’s more full than many healthy people I know. I graduated from that tough college, participated in and witnessed some historic events, got a Master’s overseas, spent some time in countries with no health care system whatsoever, got married, et cetera. I can’t think of anything I haven’t or can’t accomplish that’s due to my illness, that’s anything I really want to do. Maybe thru-hike the Appalachian Trail, but my life is so full right now that I don’t have the eight months to spare.
A lot of my accomplishments are due to what I think is the right attitude: I’m not afraid to fail. After I graduated from college, and was thinking about making some pretty big changes, I had a doctor who was intense and aggressive in his treatment. I was planning a trip to Latin America, and worried about my health, and wanted his blessing; he said, “Look, this isn’t for me to say. I think you can do it, but it’s more important whether you think you can do it. And if you’re not sure, you can always bail. But don’t not do it just because you’re worried you might have to bail at some point.” I went, I had a good time, and didn’t get sick at all.
So when it comes to stuff I want to do, I take the same approach: I try it until I discover I can’t do it. And I have been surprised at the things I can do, even when I thought I couldn’t. Granted, my illness is a factor, and something I often have to work against or around, and there have been a couple minor things that were just too difficult, but I’ve had a pretty amazing life, nonetheless.
What I have done is rather a lot, and what I aspire to is just about everything else.
Tags: biog, ills, pfam
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12 July »
I wrote this post for Change.org, and my editor decided it was “not right for Change”. I still think it’s important, so I want to publish it here (with minimal edition).
Recently [Change.org] welcomed a post from Fran Drescher, asking readers to support her charity, Cancer Schmancer. I hope some lucky reader enjoyed a call from Ms. Drescher, but I hope most readers did not in fact donate.
I have no doubt that Cancer Schmancer is founded and run with the noblest of intentions. But the fact is, Cancer Schmancer – like hundreds of similar charities – will not get us one step closer to real health reform and universal health care.
I have written at length about this problem [here] – one post, Don’t Walk, is the most-read on that site. To recap briefly, as important as early detection and cures for diseases are, they are not a substitute for real, systemic reform. Imagine a woman whose cancer was detected early through Cancer Schmancer’s efforts: what if she can’t afford the expensive medicines necessary to treat that cancer. How is she better off for knowing sooner that she will die?
Or consider a man whose prostate cancer is detected early: arguably, he’s worse off. According to the National Cancer Institute, recent studies “suggest that many men were diagnosed with, and treated for, cancers that would not have been detected in their lifetime without screening and were consequently exposed to the potential harms of unnecessary treatments, such as surgery and radiation therapy”.
Early detection is not the key to fighting cancer. Neither is an expensive cure. What we need first and foremost is a health care system that takes care of all sick people. That’s why this blog is called “Health Care”, and not “Cures and Detection”.
And what’s most troubling about the many disease charities is that they stood on the sidelines for the most important health care struggle in a generation. Of the hundreds of charities out there, only a few joined significant coalitions like HCAN to work towards an equitable and effective health care system. Who, exactly, are they trying to help?
Charity is important. We should all consider the needy and unfortunate around us, and give accordingly. But charity isn’t change – and it’s certainly not justice.
(Photo credit: anniemole)
2 Comments
30 June »
At last – it’s finally here! The first-ever anniversary of Patients for A Moment – the blog carnival for, by, and about people with illness.
When I started blogging just under two years ago, I was disappointed that there weren’t more people blogging about living with illness. But I was even more disappointed to learn that the people who were blogging really weren’t talking to one another. I started Patients for A Moment to try to change that, and I’ve been delighted to watch this conversation unfold – especially since we started asking specific questions for each edition.
This edition’s question was: what have you learned? What have you learned about yourself, your illness, and other sick people? If nothing else, I hope you’ve learned over the past year that we really do have more in common with one another than our differing diagnoses would suggest. No matter what pills you take, what specialists you see, what bills you pay – you’re still doing all of those things, just like any other sick person. The details are different, but the experience is the same.
As for me, I have learned over the last few months that I can’t do justice to this carnival; I don’t have the time to give it the attention it deserves. So I put it up for adoption. Leslie at Getting Closer To Myself will be hosting the next edition – July 14th – and after that she will be in charge of coordinating each the calendar and helping hosts put together each biweekly edition.
Much as it pains me to let go, I know Leslie will do a great job with this. She’s been one of the most reliable hosts over the last year, and also one of the most consistently thoughtful and interesting contributors. For this week’s edition, Leslie writes about her learning curve with lupus and RA. She’s come farther in two years of dealing with illness than I did in my first ten years.
Lisa at Rest Ministries says her answer to this week’s question could be a book – and her post is long and fruitful.
Selena at Oh My Aches and Pains! writes about the benefits of being a sick chick. Did you know there were any such benefits? I would not have guessed it, but you have to go read her post to find out what they are.
Aviva at Sick Momma writes about an “Unhappy Anniversary” – fortunately, she’s not talking about PFAM. Even after three years of dealing with illness, she’s still a “medical mystery”.
Joanna at Dear Thyroid writes “I hate you, thyroid cancer, and love is bigger than fear” – which is also a concise synopsis of her post. Joanna hates cancer, but “loves the person” she’s become. I think a lot of us share the same sentiment.
Most people who are chronically ill learn sooner or later to stop apologizing for their illness. Still, some people feel they’re taking up too much of their doctors’ time. Dr. Rob at Musings of a Distractible Mind writes about those apologies – not that he’s apologizing himself, just writing about apologies.
Finally, Dot at Fibro World reports on Botox as a treatment for fibromyalgia.
There you have it: a strong showing for the first year of Patients for a Moment. Be sure to check in with Leslie for future editions, and let her know if you can host. I look forward to another year of engaging conversation through this carnival – and I hope you do, too.
(Photo: cleverboy68)
Tags: pfam
4 Comments
17 June »
I dropped the ball: yesterday should have been the first anniversary ever edition of Patients for A Moment. I’ve been busy offline, by way of excuse – but better late than never.
Since I never sent out an announcement, or even posted a question, I will do the anniversary edition next week. And the question is: what have you learned? What have you learned about yourself, your illness, and other sick people?
Send your answer to me at dx@duncancross.net by Sunday midnight, with:
a. Your name
b. Your blog’s name
c. Your post’s title
d. The URL for that post
I will compile the posts and put them up next Wednesday, the 23rd. And spread this announcement around: let’s finish our first year together with a great edition of PFAM.
Tags: pfam
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6 June »
For the last several months I have been taking a drug called paroxetine – the generic version of Paxil. Paroxetine is a selective serotonin re-uptake inhibitor (SSRI) used to treat people with depression. In my case, I’d been having difficulty focusing and getting things done, and my doctor felt that this might be due to a low-grade form of depression. And for the last several months, things have been much better in that department.
But I’ve also had sleep disturbances, sexual side effects, and an excessive appetite the entire time. And lately I wonder whether I would be better off without paroxetine; after all, I can’t take it forever. So I talked to my doctor, and he agreed that I could start to wean off the drug. He told me to watch out for “SSRI discontinuation syndrom”, and I’m quoting his email here:
which is common and can cause mild dizziness, fatigue , headache, nausea, and diarrhea. Uncommonly, it can cause various tingling and nerve distrubances
I’ve been taking half my dose since Wednesday, and I yesterday I woke up a little dizzy. I thought, well, “it should only be mild, and it’s not unexpected”. I decided mild dizziness was not a problem as I went about my day, which included some driving – in fact, a two-hour round trip to get to a meeting I had promised to attend.
As near as I can tell, serotonin does two things: mostly, it works in the gut to help regulate intestinal movement – hence the abnormal appetite. Secondly, it works in the brain to help regulate social interactions. And the way SSRIs work is to keep the serotonin in your system by preventing it from being soaked up by your brain. If your brain is inhibited from re-uptaking the serotonin, then it stays better attuned in various stressful situations.
The thing about driving is that even when you’re in a car by yourself, it’s a surprisingly social activity. You have to interact with the drivers around you, and obey all sorts of rules and conventions, and all the while without any easy way to communicate directly. And what my doctor apparently did not tell me is that a lack of serotonin can make you deeply anti-social.
So after a half-hour of driving – in heavy traffic – my brain had sucked up all the serotonin my body was going to produce. I was a mess, and a wreck waiting to happen, and not even halfway to my destination. The lack of serotonin made me defensive and paranoid and irritable. I screamed at one driver for cutting into my two-car-lengths’ safety zone, while I was trying to focus intently on the car ahead of me and thinking, “To hell with the mirrors, Watson*, they’re nothing but bad news!” I seriously considered stepping out of my car at a red light and beating the crap out of the driver’s new Ford with a tire iron. I knew it was a “bad idea”, but I also knew it would make me feel a lot better. I talked myself out of it while the light changed.
At that point I was already headed home. I realized there was just no way I was going to make it to the meeting and back again without killing somebody. I made it home safely, took the rest of my dosage, and tried to chill out.
Despite this being a minor debacle, I did some things right. First, I made a point of talking to my doctor about what could go wrong, and what to expect, and how to react. Second, I kept double-checking myself to make sure I was behaving normally – a habit I learned while taking prednisone, the gift that never stops giving you nightmares. Had I not been so well-informed, and so attentive to my brain, yesterday might have gone a lot worse.
None of this is going to keep me from going off paroxetine, and it wouldn’t keep me from taking it again at some point. But, like a lot of things, it’s just going to be a little tougher than I expected. In the meantime, I think I’ll probably ask someone to hide that tire iron from me.
(*Coach Watson taught drivers ed and tennis at my high school. He insisted that we check our mirrors every ten seconds while driving, and eight to twelve times before even turning on our blinkers. He wasn’t a very good tennis coach, either, if memory serves.)
Tags: biog, docs, ills, meds
2 Comments
3 June »
My latest post for Change.org is up, and I talk about my discomfort with the medical marijuana movement, and how there’s a plant I would much rather see legalized:
I would be more comfortable — and supportive — if marijuana were the basis of numerous drugs currently used as medicine. Or if it had a long history of medical use, and its effects and applications were well-known to medical science. Or if it were widely available and already legally grown in this country, by farms and garderers alike.
None of this is true of marijuana – but is true of another plant: Papaver somniferum, also known as the Breadseed or Opium Poppy.
For whatever reason, marijuana legalization is a very popular topic on Change.org, at least among the membership. This means that a number of the site’s causes and petitions focus on some aspect of marijuana legalization or medicalization. With that in in mind, I wrote this post partly just to yank some chains, so there’s that. But I actually do find it intensely frustrating that the government has these absurd rules on this particular plant. It would be immensely gratifying if one consequence of the broader legalization movement would be that I could grow and use the poppy without fear of a felony conviction.
Tags: change, laws, meds
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