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A day in the life of chronic illness

Recently Rebecca asked in the comments of an entry:

By the way, have you been able to lose any of the weight you regained when you were attacked by the Killer Headache? Do you think you’ll ever talk about the subject? Since many (if not most) of us were drawn to this site by your book and or diet adventures, I think you’d have an eager and receptive audience. And, as a long-time maintainer of an 85 pound loss (more than five years, and holding…) I’d be interested in what you have to say about “rebounding.”

Weight loss? Oh, right, weight loss. I would still like to lose my headache weight, and I do think about losing weight every day, but lately my thoughts have been more preoccupied with figuring out how to live with my constant headache. I have a chronic illness. I will probably always have a chronic illness. I have good days. I have bad days. When I wake up in the morning I don’t know what kind of day it will be, but I soon find out.

On good days, I make my oatmeal and drink my coffee and go to my office. I work happily on my projects, either designing webs or writing words. I probably go for a run before lunch and come back refreshed and think, “I can do this! I can beat this thing! The headache won’t get the best of me!” and I eat something healthy, like a nectarine or carrot sticks. Then I go back to work and by the evening I feel a sense of accomplishment, though my head probably hurts a lot by now from working on the computer all day. Then I watch some TV and when I weigh in the next day I think, “I’m doing so much better. I can really lose the weight now!”

On bad days, I make my oatmeal and drink my coffee and go to my office. I stare at the monitor for a few seconds, then turn on the TV to watch the end of Good Morning America and the beginning of Regis and Kelly. I might read stuff in my Google Feed Reader. I read my emails but don’t have the energy to put together a proper line of thought to reply to anyone. I sigh. I slump. The act of getting out of my chair and walking outside to check the mailbox feels like I am walking through the deep end of a pool, expending all my energy to travel oh, so, so, so, slooooowly, when all I want to do is collapse and float to the top. I tell myself I should exercise because that will release endorphins and make me feel better, just like the doctors have told me. But I don’t want to exercise. I want to lie down on the couch, or my bed, so I do. I’m not really tired enough to nap, but being unconscious sounds really appealing. I feel guilty because if I don’t work, I won’t get paid, and I won’t be able to afford food to eat.

Eating sounds really, good actually, and I’ll start to fixate on something delicious that could momentarily make me feel better, like a Mint Cookie Milkshake from Steak N’ Shake or the Pumpkin Spice Frappucino from Starbucks that just came into season. I tell myself, “No, you shouldn’t eat that. You want to lose weight.” Then I disagree with myself and say, “Who the fuck cares? Life is a ball of shit and I want some fucking ice cream.” I go back and forth with myself for an indeterminate amount of time. Sometimes I’m good and don’t eat the milkshake, if only because the thought of driving half a mile to Steak N’ Shake seems impossible. Sometimes I find the energy and purchase some ill-gotten goods at the grocery via the self-checkout line so no one judges my purchase. By the end of the day, I’m thinking that if a meteor were to hit the planet and cause all life to go extinct, I would be ok with that.

Then I go to bed and wake up the next day, which is either a good day or a bad day. Who knows which it will be? There is only so much I can do to control it. I take my pills. I try to exercise. I try to eat healthy. I drive past the Krispy Kreme and don’t’ stop (except when I do). I’m still fighting it (except when I’m not). On good days, losing 30 pounds seems easy and natural and completely achievable. On bad days, I don’t care about my weight at all, and I’ll take being fat if it means I can have some cookies.

I spend most of my energy trying to maintain an equilibrium. I’m happy if I simply feel ok during the day, not necessarily happy or energized, but not depressed and miserable. That’s how it is with chronic illness. You’re never cured, you just manage it the best you can.

So, yeah, weight loss. Weight loss is great. Woo-hoo, weight loss! To those of you losing weight, I salute you, but it’s not the focus of my life right now. I am just trying to get by, an hour at a time.

Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn't Go Away
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42 Comments

Shannon • September 14, 2009 at 10:14 am

As someone else with a chronic illness, I totally get this. You just gotta do the best you can on the days you can. Sometimes it sucks. A lot. And sometimes it’s not that bad. You have my sympathy and admiration that you are keeping on, keeping on.

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Peggy • September 14, 2009 at 10:38 am

I know you have said that you don’t want any more migraine remedies or causes. I just have to share with you that a good friend of mine was suffering terribly with migraines and discovered that hers have been caused by fluoride toxicity. This was determined by her doctor with blood and urine tests. She is going through de-tox now and her migraines are gone. Apparently flouride is in alot of things….love your blog!

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vivi • September 14, 2009 at 10:54 am

Doesn’t walking make you feel better? A bit of fresh air always helped me with my (tumour-driven) headaches. Walking ten or fifteen minutes towards a rewarding milkshake might help.

(Noone in Europe would drive half a mile, but that’s because we live mostly in cities, and maybe that half a mile of yours means crossing over the motorway or something, so I’m writing nonsense here).

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kylie redmond • September 14, 2009 at 11:16 am

wow i can see why you dont like to talk about the headache everyone seems to think they have the solution dont they? well i have a two year 4month old son and since he was 2 months old i have had a head/neck ache on one side of my head that sometimes maked me stay in bedd all day long, which is hard to do with a child!!! i have come to the conclusion it is due to the quack anisthesiologist who messed up my 3 epidurals that didnt even work, and am pretty sure ill have it for life :-( so i just want you to know i know exactly how you feel because on days when my headach is bad, its BAD and i dont feel like i can go on any longer, and then the next day its no so bad and i play with the baby and we are hapy as can be but i know just around the corner is another bad day….

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Laura P • September 14, 2009 at 11:56 am

Oh Man! I can’t even imagine having a chronic headache. It’s not like you can pretend you don’t have a headache…you kind of need your head to be clear for most things you do! Thanks for taking time to write about what it’s like to have this illness. I’m sorry you are going through this!

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Kelly • September 14, 2009 at 11:56 am

Thanks for this insight into your days. My mom suffers from chronic pain (arthritis) and is now completely disabled. Sometimes I don’t know how she bears it. I give you a lot of credit for doing all you do, despite the pain.

I look forward to reading your book!

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Mindy • September 14, 2009 at 12:29 pm

Thank you for sharing your struggle with this. I know that was difficult and you will now have to endure people again giving you advice.

I appreciate that you took the time and fortitude to be so honest.

Hugs to you my friend.

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Diane Fit to the Finish • September 14, 2009 at 12:32 pm

Thanks for your honesty and the insight into daily life with chronic pain. I lost a lot of weight too (12 years ago) but haven’t had to deal with what you are going through.

Take care.

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Christy • September 14, 2009 at 12:39 pm

Thanks for this post. I have suffered with anxiety and depression since I was a teenager and have been on medicine and in and out of therapy for 6 years. My parter of 10 years has Rheumatoid Arthritis. It’s a barrel of laughs at our house, some days, and other days, not so much.

Last week, I said to her, “what are we going to do about being fatties?” Her reply: “Nothing, I don’t care right now.”

Some days, it’s a struggle to get out of bed for me, to get out of the house, to do what I have to do to function like a normal person. I just don’t have it in me to fight the ice cream cravings when I have to fight to get a shower.

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Heather • September 14, 2009 at 1:40 pm

Thanks for posting this. Weight loss and headaches… two subjects I’m very familiar with. I’ve battled my weight all my lief and I also have frequent migraines. I went through a really bad spell this summer where I also had a cronic daily headache for about two months, with migraines every 2-3 days. It was awful. I’m still headachy more often than not but at least I’m functional again. No worries, I’m not about to offer any advice – I totally get how annoying it is to hear 15 different people talling you about something their friend’s cousin’s sister-in-law tried that worked. :) I get that people are just trying to help but really, the last thing you need when you are in serious pain is to try to have any kind of conversation, much less one about your pain.

For me, when I have a migraine eating actually relieves the pain. It only goes away while I’m eating; a few minutes after I stop eating the pain comes right back. Not very conducive to weight loss…

I’m really looking forward to your new book when it comes out. Thanks again for sharing.

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rebecca • September 14, 2009 at 1:53 pm

Pasta Queen, I appreciate your taking the time to reply to my query – and wanted to say that I can relate more than you might imagaine.

Shortly after I lost the 85 ponds, I was diagnosed with cancer, Thank heaven, a total hysterectomy took care of that. A year later, however, I had a back injury that made it necessary – after months of chronic pain and no response to myriad non-surgical interventions – to have not one, or two, but three surgeries. The last one – the fusion of four sets of vertebrae – “fixed” the structural probelm, mercifully, but has left me in a state of chronic discomfort (on a good day) or pain (on a bad day). So, I get to deal with that unpredicatble, “what kind of day do I get today?” chasllenge, myself.

In the face of this, I’ve found that maintaing my weight at a healthy, thin level has been very theraputic for me: it’s a part of my physical self that I can actually have some control and/or influence over! I may not be able to decide if I’m going to have a painful or less-painful day, but I sure as heck can decide whether or not I eat that family-sized box of Cheez-Its or not. I’m no saint, but it keeps me from feeling like “Who the fuck cares? Life is a ball of shit and I want some fucking ice cream” because, you know wht? I DO CARE – and even if I can’t control the whole herd, so to speak, I will take whatever bull by the horns that I can. My limitations are just that – not the end of things.

Please don’t thin I’m lecturing or preaching – we each of us must deal with things like this as best we can. I just want to give you a little encouragement, because, no pun intended, I really DO feel the pain!

May you feel MUCH better, very soon.

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tgt • September 14, 2009 at 2:08 pm

Hey PQ,

Just wanted to jump in with everyone and thank you for writing this post. I have chronic migraines that are, thankfully, usually managed with meds, but on the bad days, or until the meds kick in, I can only manage to hold my face and cry. The fact that you are self-employed and managing your health is amazing

BTW, after randomly coming across your blog I read through your archives (during the work day…and I’m a lawyer and lost quite a few billable hours…’cause you’re that good) and read your book. I think you and your writing are great.

All the very best to you, Pasta Queen!

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Brendan • September 14, 2009 at 2:22 pm

No advice from me, just a huge ‘thank you’ for sharing. I made the weight-loss decision a couple of weeks ago, enjoyed reading your book this past week. I know that the ‘you can do it so I can do it’ argument is false but your story is still inspirational. Armed with a healthier attitude towards food, a determination to excercise regularly, and few advesities, I am confident I can stay on the healthy lifestyle path. Your book contributed to that confidence. Thank you – I hope your life sucks less.

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Abby • September 14, 2009 at 3:01 pm

Hey – I just wanted to throw some positive energy your way…who gives a shit about 30 pounds? Look at all you have done and continue to do. I have been “trying” to lose 30 pounds for about 2 years now, and have no headache (usually) but just bits of depression that also leave me with good and bad days. If one day at a time is all you can do for now, or all you can ever do, so be it. Thank you for your words and putting yourself and your honesty out there.

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fd • September 14, 2009 at 3:33 pm

@Abby – too right.

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Aimee • September 14, 2009 at 3:53 pm

Just bought your memoir yesterday and am already quite entertained.

I know what you mean about chronic illness. I’ve been struggling with chronic fatigue since summer 2008 – and yes, it is annoying to endlessly be diagnosed by well-meaning (but wrong) people.

My mom had a continuous tension headache for over a year, but after seeing an herbalist, she’s been cured for more than a year now.

Best wishes to you in finding your remedy.

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Shaunta • September 14, 2009 at 4:04 pm

I don’t have chronic pain. But I do have celiac disease. (I was amused to see that on your list of causes helpfully provided by the internets.) If I eat bread, pasta, whatever with gluten in it for any length of time, I am miserable. Exhausted, bloated, gassy (TMI!), my hair falls out, among other things. (No headache though.) The problem is, I go gluten-free and I feel better. MUCH better! And then I want a sandwich. On real bread, not on something that looks like bread but smells like vinegar and tastes like crap. And I can eat one without too much reprecussion. I’ll need a nap probably, and I might get a little bloated, but nothing super serious. Worth the sandwich! But then I can’t stop, and a few weeks later….ugh. Misery.

Before I knew what was causing me to feel so bad, I went to many doctors. I tried everything. Nothing worked. And then it did, and it was like the heavens opened up and the angels sang.

I’ve lost the point of this post. Just–I love your blog, I love your book, I think you are hillarious–and I’m not going to reccomend a gluten-free diet! I promise!! I’ll just send whatever good, healing juju I can your way.

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Jen S • September 14, 2009 at 6:05 pm

I suffered from chronic headaches in high school. I am fairly certain they were simple stress headaches but I do remember the debilitating pain.

Anywho, I totally understand that some days are about survival. Thinking about food is the last thing you want to do. I have 2 toddlers and when they have a particular bad night and I am working on no sleep, I just don’t care what I eat.

And, like a PP said, you have still lost a sh!tload of weight!! So you gained back a little? Who cares! Still a tiny fraction of what you have already lost!

I do hope a solution is found for your chronic pain soon. Until then you gotta just take it a day at a time. Sometimes an hour at a time…

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Quix • September 14, 2009 at 6:42 pm

I was curious but I thought no news was good news… boo that the headaches still come and go. I’ve never had to experience anything like this so I won’t even try to say anything but I hope things continue to trend in the happy, good day direction.

As long as you are happy where you’re at for the time being, who gives a flying leap what the scale says. :)

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Moosecat • September 14, 2009 at 7:13 pm

Thank you for sharing this. I was wondering how your headache was going but didn’t want to ask as I felt that would have been rude. Have lived with Rheumatoid Arthritis for 20-odd years now and totally understand the good day/bad day scenario. Medication does help but not always. Sending you hugs from Australia.

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Rae • September 14, 2009 at 8:16 pm

Hey, No advice from me, but a very BIG thank you. I’ve been umming and ahhing about losing weight for a long time now. It took a photo taken on the weekend to jolt me into ‘oh my goodness, i look like that?’ realisation.

I’ve been reading your blog for a bit now, and I just want you to know you are a very big inspiration. That photo will keep me going (when I look at the biscuit barrel, I’ll picture the photo and not have a bickie) and your blog will also help, just knowing that you have done it, and are still doing it.

I really hope there is an end to your headache soon. It really is a hard way to ‘be’.

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Deb • September 14, 2009 at 9:30 pm

It really sucks what you continue to have to go through with your headaches. For what it is worth I am very impressed that you have maintained the vast majority of your weightloss through all this.

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Debbi • September 14, 2009 at 10:36 pm

That was an intense post. I am amazed how you can in a few paragraphs, tell us so much about yourself without sounding like your whining or complaining. It’s all just matter-of-fact. Thank you.

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Merry • September 14, 2009 at 11:55 pm

All I can say is that sharing your pain is probably really helping someone out there who feels all alone with a similar situation. Judging by the comments, a lot of us have to deal with recurring headaches, though of course you have to be an overachiever in this regard you shameless hussy.

Seriously? It might not make you feel any better, but I am sure a post like this will help other people. Maybe that will earn you good karmic points.

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Bonnie • September 15, 2009 at 12:34 am

Read the book (loved it) and been reading your blog for a few months.

I can’t imagine how exhausting your pain is — day after day. I am sorry you have it, and I hope it goes away.

Thank you for your book, and your insights. You have an excellent ‘written voice.’ You always add value to my day.

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Bonnie • September 15, 2009 at 12:35 am

Read the book (loved it) and been reading your blog for a few months.

I can’t imagine how exhausting your pain is — day after day. I am sorry you have it, and I hope it goes away.

Thank you for your book, and your insights. You have an excellent ‘written voice.’ You always add value to my day.

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Callie • September 15, 2009 at 1:18 am

Wow. I hadn’t grasped how bad an entire day could be because of your headache. I also hadn’t realized how little control you have over how the day goes. I’m very sorry to hear this is how it is for you. I hope this damned headache disappears, and soon.

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psychsarah • September 15, 2009 at 7:51 am

You are such a great writer! I have clients who tell me this kind of stuff all the time, but with the way you craft your words, it comes through so clearly, and like others have noted, not whiny/complaining, just reality. I may send some of my clients here to read this, as they often struggle to explain their illness to others in their lives. I can’t wait to read the next book-I bet lots of people will benefit from your ability to express these ideas so well.

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Heather • September 15, 2009 at 7:52 am

As someone who has been living with migraines for the last three years and a long-time lurker of your website (hi!), I appreciate you sharing this. It’s hard to get across how tiring it can be having your head hurt some or most days. It just saps your energy.

While I wouldn’t wish this condition on my worst enemy. it’s just nice to know someone else understands and can put it into words.

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Bet • September 15, 2009 at 9:08 am

Remember me? I have Pseudotumor Cerebri (which most medical professionals think will go away with weight loss–most who specialize in the disease say IT causes you to hold on to weight)

You hit this right on the head. Invisible illness is EXTREMELY challenging. My doctor has suggested I carry a cane just so that people understand. I would, but I’d just leave it somewhere or attempt to tapdance with it.

From this post, I hope more people understand, not all of us have our health. If we smile, it’s not because we feel good, but it’s in spite of not feeling good. The days when you just can’t muster more than the couch have to be understood too.

We don’t want sympathy, but understanding. We don’t want help, unless we ask for it, and realize that the asking is almost impossible.

Thank you for this. Fantastically written. You are not alone, sometimes that helps.

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MR • September 15, 2009 at 10:43 am

I found this post really hilarious – I don’t mean that in a rude way, but I have had a chronic migraine 24/7, 365 days a year for 10 years now. I would like to lose 10-20 pounds and sometimes I wonder why I don’t just get on that already. Then I remember that I am too sick to work, socialize or even read a book and I kind of have to laugh. I mean, sure, if you can actually PLAN your day, it is pretty easy to lose weight and exercise. But when the best laid plans for everything from grocery shopping to hot sex can be obliterated by blinding pain while I stamp my feet and the universe cackles evilly at me… I find it really hard to care about my fat ass. Sometimes I find this funnier than others.

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harmony • September 15, 2009 at 1:23 pm

Hey hun. First, thank you for sharing. Living with Chronic depression, often times people look at me like i’m just… making an excuse. “oh, exercise will make you feel better”. Yeah, thanks. Bah Humbug!

I was wondering if you have ever read “The Spoon Theory”? If you haven’t, i highly recommend it… you know, on a good day. You can google it or i’ve added the link above. It really helped me explain my situation to my fiance. Some days i just dont have enough spoons to do what i need to, and other days my cup runneth over. I hope you have an abundance today.

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Abby • September 15, 2009 at 1:58 pm

I don’t have a chronic illness and still completely relate to your post. I’m most likely going to be laid off at the end of the month, so soft serve from DQ always sounds justifiable these days. Good luck with your head and keep writing. You tickle my giggle spot.

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Widgett Clark • September 15, 2009 at 11:55 pm

So I just need to say one thing. You are more of an inspiration to me now that you have said you are not focused on weight as much anymore. Illness or not, as a person who has now lost 81 pounds and plans to keep going, it is nice to hear that I will be able to move on mentally. I don’t want to think about weight and food and exercise constantly like I do now. Thank you for focusing on life, as it should be.

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Sarah • September 16, 2009 at 8:50 am

OMG. This post totally spoke to me!

I had major back surgery last fall and have lost significant functioning in my legs & feet as a result. I’ve gained 30 pounds during my recovery from lack of exercise. This is after I’d just lost 20 on WW over the course of 9 months.

Dealing with the recovery from this has been arduous, frustrating, humbling, daunting…you name it. I would also love to lose that weight I put on but at some point you have to just accept today and keep going. It will come off when it’s ready. I need to worry more about functioning like a normal human again.

Thank you for posting this. You can’t imagine how much better I feel now.

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emma • September 17, 2009 at 9:44 am

Jennette,

Thanks for your honesty.

Headaches like you have are killers. I hope yours will go away someday and never come back.

And depression, well, as far as I know, that may come and go throughout one’s life.

You are a beautiful, inspiring person, and a wonderful writer. You are still so young, I guess there are lots of good days around the corner for you.

By the way, I’ve read every blog post you’ve ever written. Why do I keep reading? Mostly because I, too, struggle with 20-30-pound weight gains and losses (been doing it for 45 years now, with no end in sight). I read your blog because you can articulate struggles (wins and losses) I’ve experienced but can’t put into words. I’m excited for your new business endeavor, too. I love to read about entrepreneurs (sp?).

I just wish you didn’t have those terrible headaches.

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Theresa • September 17, 2009 at 11:03 am

Just a thought. Who said thirty pounds lighter was where you were supposed to be with weight anyhow? Maybe this is where you are supposed to be for now. It’s just a number.

Here’s hoping today is a better than average day for you. :)

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Sally Parrott Ashbrook • September 18, 2009 at 1:41 pm

@rebecca – I love this wisdom you share, Rebecca. Just what I needed about right now. :D

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Jo • September 20, 2009 at 3:40 pm

I am almost finished reading your book, which I have equally laughed through and been inspired by, and just today logged onto your blog for the 1st time! I lost 140 lbs. (to goal) about 5 years ago and have re-gained about 50 lbs. I am desperately trying to get a grip and get back on track.

My heart goes out to those of you who deal w/ chronic physical or emotional pain and can only imagine how difficult it must be to add the weight issue to your list.

I don’t have any health issues and have no excuse whatsoever for letting my old eating habits take over. I am humbled by what you’ve written. Thank you for being honest and so transparent with us.

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Tiffany S. • September 27, 2009 at 1:01 am

I hope you really know deep down in your heart that on any given day when you even feel well enough to type or pick up the phone, there are a bunch of us out here who’d be happy to hear you bitch, moan, and cry if it would make you feel better for one second.

When I used to have migraines, the thought of just standing up vertically would make me vomit. I’m just sayin’…for those days when you’re a little more coherent…we’re out here for you.

:)

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Anonymous • December 13, 2009 at 8:24 pm

> I am so sorry to hear about your headaches and know exactly how you feel. I have severe sinus pain that makes me feel on bad days like I have concrete weighing down on my cheeks to the back of my neck. (It is chronic, due to polyps and has robbed me of all sense of smell and taste.) I have gained 10 pounds this year. Just like you, sometimes I wake up supermotivated and can go for a run (which does help me feel better, once I get there), on bad days, I slump on the couch and watch TV. Have you thought about trying celexa? I am on anxiety/depression medication and it does help a little to lift my mood, although the joy of chronic illness is that there will always be bad days and good days.

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Julie • June 1, 2010 at 7:14 pm

I am so looking forward to your new book coming out, Chocolate and Vicodin. I am into my 19th month of a unilateral migraine, unresponsive to triptans, or anything. I found your website the same day I came home (in tears) from an appointment to the 4th neurologist I had seen last year. I had waited 3 months to get an appointment with this neurologist that was suppose to be the best in our area. She said to me with a tone of irritation “What do you expect me to do about it?” Uh, suggest something, being the specialist–that would be a start. Kind of thought that was the idea of going to see the professional. Good thing your website was there, and I just stumbled onto it, as I needed to laugh that day in a very desperate way.

I have found a new Dr., still no solutions, but reading your posts provide delightful distraction. Distraction is my best relief.

Hoping you better days, and looking forward to your book (my next big fix!).

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Jennette Fulda tells stories to the Internet about her life as a smartass, writer, weight-loss inspiration, chronic headache sufferer, and overall nice person (who is silently judging you). She does this at JenFul now, but you can still have fun perusing her past here.

Disclaimer: I am not responsible for keyboards ruined by coffee spit-takes or forehead wrinkles caused by deep thought.

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