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.

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)

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)

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.

]]> http://duncancross.net/2010/06/pfam-first-anniversary/feed/ 0 http://duncancross.net/2010/06/this-is-my-brain-off-drugs/ http://duncancross.net/2010/06/this-is-my-brain-off-drugs/#comments Sun, 06 Jun 2010 17:50:39 +0000 dx http://duncancross.net/?p=2897 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.)

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.

And, she reminded me that I am due to host the next edition. This will be the first anniversary of Patients For a Moment – that’s almost 26 editions (minus a few skipped weeks) of patients talking to patients, learning and growing from each other. I suppose I’ll have to get my act together and write a post this time.

One of the most immediate benefits of health-care reform is the Federal high-risk pool, which takes effect July 1st. This program allows people who have been uninsured for more than 6 months because of a pre-existing exclusion access to health coverage. At last, some of the sickest and most vulnerable people in our society will get the help they need.

It’s worth noting that the high-risk pool program is a stopgap, intended to help out the most needy people until the full reform bill takes effect in 2014. I have previously argued against high-risk pools as a matter of permanent policy, but in this case I think it’s necessary to provide at least some relief until better policy takes effect.

I meant to do this weekly, but have been super busy the last few weeks – nothing bad, but still enough to keep me from giving this blog and project the attention it deserves. I am hoping things will mellow out enough over the next few weeks to let me get back into regular posting, and so that I can finish uploading Mortals in a timely fashion.

The truth is that health care in this country is a civil right, and our current system severely constrains the political, social, and economic freedoms that all Americans ought to enjoy.

This is a familiar idea for readers of this blog, but is now focused on a specific controversy in the ongoing reform debate. I honestly believe that our kids will look back at the reform-repeal effort as an ugly and baffling moment in American history, if history remembers that moment at all.