12 March »
Regular readers will note that my blogging has been slow lately. I’ve been busy offline, and meanwhile I’ve thought about refocusing this blog. Here’s what came from that process:
-I am now a member of Change.org’s Universal Healthcare blogging team, which means I’ll be doing all of my reform, politics, and policy posting over there. Change.org has done a great job of recruiting authoritative voices from all aspects of health care, all of them advocating for progressive reform. It’s one of the blogs I’ve kept in my RSS reader, and linked to every now and then. I will include brief excerpts of my Change.org posts here, but for the most part I’m done talking about reform on this site. You can read my first post, though it will be familiar material.
-I am also done talking about myself on this blog, more or less. I’ve run out of hilarious stories about my illness. I want to focus instead more on helping other people navigate their illnesses. To that end, I’m going to try to post at least one “How to…” post a week (tagged as “how2″), giving advice and ideas for getting by. See, for example, my last post: “How to… Learn to Fly!”
-I’m going to continue posting chapters of the draft of League of Mortals. I suspect nobody is reading it, but that somebody will appreciate it, sooner or later.
Tags: misc
3 Comments
11 March »
If you are sick and need (or want) to fly, it is a daunting prospect – the scrutiny, the crowds, the discomfort. What used to be a relatively benign experience has become – even for the healthiest traveler – one gigantic hassle after another. But for many trips, there’s really no other way to get where you’re going. Arriving at the airport prepared to manage your circumstances will make your trip a lot more pleasant – or at least, less unpleasant. After a digression, I offer some tips to make air travel easier.
The first thing I want to say is that none of this should be taken as criticism of the fine men and women of the Transportation Security Administration. They are, for the most part, courteous and professional to a fault – which is a huge difference over the first year or two after 9/11, when they were mostly window-licking idiots. Since then, hiring and training have gotten a lot stricter, and it shows.
The problem isn’t the TSA – it’s the laws they’re hired and trained to enforce. Let’s take a brief review of the last decade in airport security history: in 2001, a handful of guys were able to gain control of four jetliners because the cockpit doors were too flimsy to keep them out – despite the fact that this was a well-known problem already. Yes, September 11th was an awful tragedy, and pointed out some glaring flaws in air travel security.
But since then, every time a would-be terrorist even thinks about attacking an airplane, the passengers get saddled with ever more onerous restrictions. The shoe bomber failed – and now everybody has to take off their shoes. (Naturally, this happened less than a year after I bought a pair of shoes specifically for air travel – no metal – so I wouldn’t have to take them off.) Then authorities uncovered a terrorist plot involving the use of liquid explosives – nevermind that the plot was wildly implausible – and we now have to put our liquids into see-thru plastic baggies, right next to our shoes. Finally, the underwear guy burned his nuts off, and now the TSA is redoubling its efforts to take naked pictures of us. Got that so far? Good – end rant.
1. Ticketing: buy the aisle, near the back of the plane, especially if you have bladder or bowel issues. Even if that’s not your problem, you should know that the flight attendants will spend most of their free time in the aft galley of the plane – if you need water, or a snack, or medical help, it’s better to be close to the people who can provide those things.
2. Packing: You can carry any amount of any medically necessary liquid (or equipment, for that matter) as carry-on, and you should carry as much as you need with you. Don’t overdo it – pack plenty extra in your checked baggage – but make sure you have enough to get by for the duration of your trip, in case your bags get lost. How you pack those items depends on how you want to go through security (see the next paragraph). Of course, once the terrorists figure out this loophole, and start daydreaming a plot involving bombs disguised as prescription medicine, all bets are off.
3. Security: the line for security always makes me tense, but I’ve learned a few things that help me get through. First, I just assume that I’m going to get a bag check. It doesn’t always happen, but often enough that I no longer bother to put my liquids into a plastic bag. The punishment for not doing so? Bag check – so it doesn’t make much difference. If you have anything potentially embarrassing (ostomy supplies, for example) you can ask to be screened in a private area.
Even when I do put my liquids in a bag, the screener usually sees something that earns me a bag check; lately, it’s been my cholestyramine, which is a yellow powder (it’s in the bottle labeled “bullshit” in the photograph). Sometimes it’s the scissors I use to trim my appliance. On my last outbound flight, they wanted my teeny, tiny Swiss Army knife (I convinced them to let me break the blade off instead, so I at least had the rest of the attachments). Like I said, sometimes they don’t even bother: the last time I flew, the screener was very obviously not paying attention to the monitor when my luggage went through.
And remember, you can always refuse the body scan – and get a pat-down instead. You may not like either option, but I prefer the pat-down. The screeners have always been courteous and respectful when I decline the body scanner.
4. Boarding: there’s a non-negligible chance – especially if you fly United – that your seat assignments got screwed up between the time you purchased the ticket and the time you board the plane. In which case, you might have to do some horse trading with your fellow passengers to get the seat you want. Failing that, you can always ask the flight attendant for help finding an appropriate seat. Don’t be afraid to use the “medical condition” card: “I have a medical condition that requires me to have access to the lavatories”, or something along those lines. Let the flight attendant run interference for you, and save you the fuss and embarrassment.
5. Flying: drink plenty of water, because planes dehydrate like nobody’s business. And you can bring your own water through security – if you can make the case it’s medically necessary. Remember to get up and stretch or walk around on long flights.
It seems to me that pilots are using the “fasten seatbelts” light more and more frequently these days. The good news is that it’s not legally binding, in most cases, though disrupting a flight crew is. If you have an immediate, medical need, a flight attendant should let you address that despite the “fasten” light. And if you need help for a medical problem in flight, don’t hesitate to buzz the attendant. That’s why the button is there – for you, and not for the doofus who just wants another packet of pretzels. The attendants will be especially helpful if they already know you have a medical condition, but either way, no point in being shy.
6. Landing: you can use the airplane bathrooms while the plane is parked, before or after the flight. I have often used the toilets while everybody else was disembarking, because I couldn’t wait to get to the airport restroom.
So that’s my advice. If you have any of your own tips, feel free to add them to the comments. Otherwise, I hope this helps you have a safe and enjoyable trip – wherever you might be headed.
Tags: how2
1 Comment
10 March »
I am late and short on this – I wish my real-world life were more conducive to my blogging – but here is the 19th edition of Patients for a Moment.
You’ll recall that the question asked where you would be without your illness. I had ample time to think about this over the past week; we took a vacation out West, and drove through Colorado Springs. You can see, from Interstate 25, the distinctive spires of the Air Force Academy chapel – as a kid, all I wanted in life was to go to the Academy and join the Air Force. That’s probably who I’d be, if I hadn’t gotten sick.
That’s my shallow answer to a deep and difficult question. After reading others’ answers, I see that I made an assumption that illness is a formative event in everyone’s life. Not so, as I learned. Getting sick was probably a bigger change for me than for many people, because it came at such a dynamic point in my life (ie senior year of high school). But for an adult, already set and formed in their identity, this ends up being a trivial question. So when Vlad at WellBook Blog writes, “I have not allowed my illness to change the deep fundamentals of my personality” – that’s a claim I can’t make for myself, and it makes me wonder when he became ill.
From the other direction, Laurie at A Chronic Dose writes, “When you’ve been sick your entire life, that becomes a much harder question to answer.” When all you’ve known is illness, it’s probably quite difficult to imagine a life without illness, at least one that makes sense.
Several contributors argued they would be worse persons, at least in some respects, without their illnesses. Diana at Somebody Heal Me says she is a more humble, cooperative person for her illness, but – “I don’t think this awareness is a fair trade off for losing my career, my connections to other people and the ability to earn my own living, not to mention the pain I live with daily, but I do think it is important to acknowledge the ways in which something positive has come out of an otherwise completely shitty situation.” Leslie at Getting Closer to Myself doesn’t exactly answer the question, but comes up with similar thoughts – “Sometimes I feel like illness has made me a stronger person than I was when I was healthy. But right now that seems like a pretty big price to pay from always having to be on guard about my health.”
Finally, two of the most positive contributions: first, Rachel at Rachel’s Diabetes Tales says she would be lost without her illness – “I can’t put my finger on any other interests that would have sparked my writing bug and allowed me to find purpose in my life.” And Sandra at Healing Environmental Illness writes – “Illness has pushed me to come to know my true self instead of living life on automatic, half asleep, racing endlessly toward that elusive concept of who I might have been.” If we can’t all be well, we can at least hope for this sort of purpose and self-awareness.
Not too many answers this week, but thanks to everyone who contributed. I don’t have a host for the next edition (March 24th), so let me know if you are interested.
Tags: pfam
5 Comments
3 March »
I am hosting next week’s edition of Patients for a Moment. My question is somewhat related to Leslie’s from the last edition:
Who would you be without your illness?
There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?
Send submissions to dx@duncancross.net with :
1. Your name
2. Your blog name
3. Your post title
4. Your post’s URL
Deadline is midnight Sunday, March 7th, and the edition will go up on March 10th.
And I’m still looking for future hosts. Let me know if you are interested.
Tags: pfam
2 Comments
23 February »
I’ve just added Chapters 6 – 10 to League of Mortals. In the previous chapters, Wesley got sick, lost his job, and had to produce a stool stample. In these chapters, he undergoes more testing and gets a new job: helping take care of a guy named Travis, who is terminally ill. If you are new to LOM, start with the introductory page. Otherwise skip straight to Chapter 6.
Travis is based on a real person, named Chuck, who was one of my best friends. I say “was” because his illness eventually claimed him, back in 1997 or so. When I first got sick, my parents thought it would be a good idea for me to hang out with Chuck, as he was also sick and dealing with some of the same issues. I thought it was a stupid idea, but I literally had nothing better to do. Besides, Chuck was in to fishing, as was I. Contra my extraordinarily low expectations, Chuck and I got along and became good friends. We discovered that we both greatly disliked the patronizing attitudes the “adults” expressed about our illness, and our friendship was more subversive in nature than my parents had intended. I don’t know how I would have gotten past those first years without knowing Chuck, but I strongly suspect I would have been far weaker and less successful in coping with my illness. Part of the reason I am writing and sharing this work is to pass along the sensibility that Chuck helped me form, and which I credit for a large part of my resilience and strength against my disease.
Tags: LOM
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19 February »
Leslie asks : What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?
My relationship to my illness has been almost entirely bad, like Ike and Tina bad – and I’m not Ike. I’ve always wished illness wasn’t in the picture.
Yes, there have been times when it’s easy to forget my illness – like when I’m asleep, or unconscious, or otherwise not awake. I sometimes escape my illness for a few hours, get far enough away mentally that I don’t worry about it, but I’m always vaguely aware that disease is somewhere inside me. I might feel fine, but I still know where the nearest bathroom is and how I can get there before anyone notices I’m gone.
There are a few times – a precious few times – that illness has actually worked to my benefit. These times would fall under the general category of “pity dates”, and I’m not proud of that at all. I’d gladly trade those rare times for a life without illness. And then, of course, there’s the question of who I would have been dating if I weren’t sick. Those pity dates were good, but not that good.
One of the constant themes in the popular understanding of illness or disability is that suffering is somehow good for us sick people. We learn something or become something we wouldn’t otherwise be – and that whatever is better than who we were. I don’t think that’s necessarily, or even often, true. The people pushing these platitudes aren’t slamming mag-citrate, trying to induce crippling diarrhea, in the name of their own self-improvement. My disease isn’t like cancer or RA; the symptoms are easy to reproduce with over-the-counter medicines (or even bath salts). Obviously, whatever reward I’m getting wouldn’t be worth it to them. So why am I supposed to be content to know that my difficulties “build character”?
That said, there is a legitimate question as to who I would be without my illness. I like to think I’m a good person, and maybe I wouldn’t be as good a person now if I weren’t sick. Looking back at the threads of my life, I see many that don’t lead to this point. And it’s hard to know whether the person I am now would want to trade places with the person I could have been. I honestly don’t know.
An interesting thought experiment, but nothing more. The fact is I am who I am, mostly despite my illness – not because of it. And if I have learned anything from my illness, I consider it my duty to humankind to teach those lessons to other people, so they nobody will ever have to suffer to learn them again.
Yes, people will suffer – that much is inevitable. But when someone tells them, “your disease will teach you X“, they can reply: “I already know X. I read it on Duncan Cross’s blog. Now piss off.”
Tags: pfam
3 Comments
11 February »
One of the goals in my theme update/upgrade has been to provide an easier means for me to publish League of Mortals. Unfortunately, WordPress does not make it easy to provide non-bloggy content, but I think I finally cobbled together an acceptable workaround.
I have published the first five chapters in this new format, so you don’t have navigate them like you do blog posts, but more like you might a book. It’s a lot easier for me, too, to publish them—which was part of the reason I ran out of steam in my first attempt last summer.
Start here for disclaimer and licensing information: League of Mortals . As you click through the chapters, the next chapter becomes available in the right-hand bar (clever, no?). I will try to post another five chapters a week, since it’s easy for me to work in batches.
Let me know if you have any problems with the format; the actual content I will just go ahead and apologize for again, and remind you once again it is Not Safe For Work.
Tags: LOM
No Comments
10 February »
The current edition (forget which number) is up at Oh My Aches and Pains. Thanks to Selena for her excellent job as host.
If you’re interested in hosting, let me know.
Tags: pfam
No Comments
8 February »
I upgraded to WordPress 2.9 today, and took the opportunity to try a new theme, too. As you can see, I still have some work to do with the buttons and the stylesheet, but everything should be functional for the time being. I’ll try to get it all cleaned up by the end of the week.
No Comments
7 February »
For her edition of Patients for a Moment, Selena asked: “What are the four letter words you use to describe your life with chronic illness?” I could fill a month’s worth of posts with just the profanities that come to mind—but who would read it?
“Suck” would be the most descriptive. “Pain” is also appropriate. “Poop”—also apt. But the four-letter word that is most problematic, the most central to my disease, the most consequential and challenging of all is this: “food”.
Granted that’s not much of a description, so let me elaborate. I have a “digestive disease”, which means I wouldn’t have any problems if I didn’t have to eat. If my intestines were useless vestigial organs—like knuckle hair—I would be fine. But we haven’t advanced that far: I still have to eat, and what I have to eat is food.
So I have a pretty complicated relationship with food. Most of the time, when I eat the wrong thing I suffer. Sometimes, when I eat anything, I suffer. And sometimes I can’t eat anything at all. I’ve been ‘fed’ through a vein, and I lived for a month on nothing but vanilla Ensure and water. I’ve been anorexic for stretches of time, simply incapable of putting food into my mouth, until I grew weak enough that my survival instinct took over and forced me to eat.
On a day-to-day basis, I’m pretty picky. I can’t eat just to eat; I have to want the specific food I am eating, to be excited about it. It has to be worth taking the risk that it will make me sick, because I never know when I will discover a new food sensitivity. My present list of food sensitivities is long and onerous: uncooked dairy, alcohol, caffeine (including chocolate), soy, hot pepper, mustard, citrus, artificial sweeteners.
It’s not all bad news: apart from that list, I can eat just about anything I want: I don’t have to worry about fatty foods, in particular, because I lost the part of my gut that absorbs fats. I just poop it out—which can sometimes be its own problem, but I still fit into pants I bought in the 1990s.
And then there are the foods I can’t live with out. Ginger: nothing is better for soothing an upset stomach. Chicken and rice soup stops diarrhea like nobody’s business. Herbal tea: just to drink something warm every now and then. Gummi bears: my favorite candy, and oh-so-gentle to my system.
Being more deliberate about my eating has also had some positive consequences. I don’t eat much junk, because I can’t. I learned to cook—I had to—just to make sure I was getting food I liked. And I took up gardening, so that summers at least have an assortment of tasty fruits and veggies—because what supermarkets are selling often tastes like wet paper.
Maybe someday I’ll transcend my need to eat, but until then I’m stuck with food: sometimes I love it, and sometimes it’s a four-letter word.
Tags: biog, ills, pfam
2 Comments
