It took a week and a half, but I found the way to explain Crohn’s Disease to Edward (and the other kids): “Your immune system is attacking your digestive system. It’s not supposed to, and no one knows why it’s doing it.” There! *brushes off hands*
Oh, wait, now I have to explain something else? Fine. “This medication is supposed to make your immune system relax so that it will stop attacking your digestive system so much. But the only way to do that is to tell the immune system to relax about ALL attacking. So your immune system is also relaxing about attacking germs and viruses. That’s why I said you have to wash your hands before AND after picking your nose.”
I had a little crisis yesterday when we picked up Edward’s new medication and saw that one of the potential side effects is a rare, rapid, fatal cancer. People and literature say, “YOU know what’s best for your child,” but actually I have no idea. How would I know? In fact, THINKING one knows what’s best for someone else is one of the classic plot lines of tragic literature. And do we think of our own parents as being the ones who know what’s best for us?
Here is the way in which it’s true I know what’s best for Edward: I know he often doesn’t really hear things the first time, so I know I need to repeat things and/or get confirmation from him that he’s understood. I know he has even more trouble understanding things if it’s a stranger talking to him, so I know it’s better if I can accompany him to things such as the MRI, to re-state for him each thing the technician says. I also know that if he is having trouble choking down a food or medicine, he really will barf it up if he forces it. This is the type of way in which I “know what’s best” for Edward. Note that even this category is pretty thoroughly dicey: maybe what would be best for Edward is if I STOPPED interpreting/repeating for him, so that he would get used to hearing things without my help; maybe what would be best for Edward is if I stopped trying to make him eat vegetables.
Here is the way in which it’s definitely NOT true I know what’s best for Edward: I don’t know if a medicine is the best one for him, or not. The doctor doesn’t know that either. Neither do any of my friends and family; neither do you. THE ENTIRE SCIENTIFIC/MEDICAL/HEALTH/PEOPLE COMMUNITY DOES NOT KNOW THIS INFORMATION. NONE of us will know until we try it and it either works, or doesn’t, or does something awful. The extent to which any of us BELIEVE we know it ahead of time (or believe afterward that we DID know it) is not correlated to the actual fact of us knowing it. The extent to which the medicine makes any of us nervous is not correlated to its effectiveness or lack thereof, or to the rightness/wrongness of a decision; believing it IS correlated is also uncorrelated.
But beliefs still enter into this HUGELY. There are entire branches of treatment options that I consider complete hooey when I have no reason to consider using those branches of treatment and have nothing at stake. Do I still think they’re hooey now that the patient is my own irreplaceable child? So far: yes. But we’re about 5 minutes into this process. Plenty a person who starts out on one branch ends up dedicating their life to Spreading Awareness after things go wrong.
********
Normally when I bring up a topic, I assume I’m bringing it up for discussion: if I didn’t want to discuss it with other people, I would leave it inside my head where I could discuss it with only myself. Today I’m overwhelmed and all over the place after reading the brochure that comes with a medication (see also: the brochure that comes with almost any medication) and then hearing “Oh, don’t give your child those DANGEROUS TOXIC POISONS! Instead try something you’ve always believed to be absolute hooey!” from someone I’d thought was going to give a very different kind of advice. Also, it’s been a week and a half since we got the diagnosis, and apparently that is about how long it takes me to absorb news.
In short, I am feeling tender and touchy and upset—not an ideal state of mind for discussions. I ate three-quarters of a pound of See’s chocolates yesterday, and I assure you that was the minimum therapeutic dose. So if you’ll allow this presumption, I’d like to GUIDE the discussion more than usual—not to make you feel nervous that anything you say will be the wrong thing, though that seems like an inevitable side effect for people as empathetic and considerate as we are, but more to clarify things ahead of time. The way a friend might arrive at the coffee shop and say, “Heads up: I have PMS, and the baby only let me sleep 2 hours last night, and I had a fight with my JERKHOLE husband right before I came here, so I might be a Bit Cranky,” and you might think to yourself, “Okay, so this would be a GOOD day to insist on doughnuts with our coffee and tell that funny story and have a little vent about spouses, and a BAD day to ask for real marriage advice or to mention the extremely irritating customer service I got the other day or to offer an opinion about the importance of treasuring every moment.”
Anyway, so I’ve come marching into the coffee shop already talking a blue streak, and I realize the topic may SEEM to be “Weigh in on what you think we should do with Edward’s treatment and/or give me alternatives to what the doctor is suggesting” or “Reassure me that I DO know what I’m doing, and that anything that makes me nervous is The Wrong Decision” or “Argue with me about how beliefs relate to reality”—but those are in fact the things that have gotten me all worked up, so although they may be good topics for another day after more mental processing has taken place, they are not good topics for right this minute.
The topic is more like “It’s so hard to know what to do for one’s child, and so hard to collect information when the information is large and group-based but the child is individual, and so upsetting and unhelpful to hear that we DO know when we really DON’T, and so upsetting to be reminded that these awful potential side effects really do happen to real people, and so odd to think about how belief systems do/don’t change based on life circumstances, and so weird to have life circumstances change like this, and so upsetting to feel like anything I choose could potentially be Absolutely Wrong and that then it will be All My Fault.”
Or doughnuts. Doughnuts are a good topic. Or things that comfort you to think of when you are in a similar tizz. (Right now I’m using “Yes, it is horrible that bad things really do happen to real people. But nothing horrible is happening to US right NOW, so there is no need to vividly imagine what it would be like if it WERE,” plus a concept along the lines of waiting to look under the bandage until a little more time has passed, plus the self-administered-medication-only concept of thinking of how many other families at the children’s hospital would want to trade places with us.) Or stories about how something scary worked out perfectly fine, like how my gut was sending me the message that Elizabeth’s tonsillectomy would result in certain fatality, and yet it went perfectly fine. Or general agreement about how life is horrible and hard and we all die no matter what we do.
Well, my current soothing thought goes like this, “I’m just going to think about the next hour. I hoping things go well during this hour, and then I’m going to think about the next hour.” I just take it hour by hour until I feel like I fit in my skin again. Also, our grocery store makes a non-fancy version of a cronut, and if all else fails I can grab one of those and then remind myself throughout the day of that feeling you get when consuming therapeutic doses of carbs or sugar. Thinking of you.
This is my mother’s method. “I can’t think about tomorrow yet. I’m just going to get through today.”
It used to strike me as very head-in-the-sand but as an adult with THINGS TO DEAL WITH it is actually deeply soothing.
That’s not just your mother’s super smart method – that’s the basis of AA. Don’t think about your life without a drink, that’s too hard. But right this minute, can you live without a drink? Yes? Great. How about this minute? And so on. It’s a well-tested theory of living.
Okay, how about this? My cousin has Crohn’s; he got his diagnosis a little less than a year ago. He’s doing better. It’s a process, and it’s not necessarily immediate relief, but he’s doing better. There is every reason to believe Edward will do better too. Crohn’s sucks.
Oh, AND – my 9 yr old has a new knock knock joke that I hear multiple times a day. It’s my fault tho… I told him. Say it out loud…
Knock knock.
Who’s there?
Smell mop.
Smell mop who?
We tell this joke as
Knock knock.
Who’s there?
I eat mop.
I eat mop who.
Countless hours of laughter, I tell ya.
I’m telling both these jokes to my sons tonight, and then I foresee them never ever letting me forget it.
As a fully-fledged adult, I still thought it was funny to name our trivia team (you know, trivia at a bar, where they call out team names and scores periodically) “Hoop Hooted”. That’s how I’d write it. Say it out loud.
bwahaha, it is still funny.
(two years later)
HAHAHAHAHA!
It’s maddening to know you are vulnerable to something, even if it’s very unlikely to happen, but to be reminded of that vulnerability…and then, what? Just have to keep on living?
I think focusing on doughnuts and chocolate and “increased” daylight and Target clearance items is a great idea. I sometimes have to remind myself in the aftermath of bad news that yes, we are all candidates for disaster throughout our lives, but if I fret about one possible catastrophe, I should statistically speaking be fretting about them all, and I don’t have time for that. Might be something that only works for me, but it is a helpful Brisk Clap (TM you) sort of thought most of the time.
That is effectively my anti-ruminating self-talk, too! It’s not just you!
I hate modern medicine for these decisions we are forced to make. Whether it be medicines, surgeries, or anything in between, it is just too hard sometimes. Just want to offer you a hug and support from me.
Oh, are we telling fun jokes?
What did the Green Grape say to the Purple Grape?
BREATHE, YOU IDIOT! (Bwahahaha. My favorite joke right now.)
I have no helpful feeling better advice, really. I hate that life is full of so much ambiguity especially when I am so crappy with handling the great unknown. Sending you warm and fuzzy thoughts. And maybe hopes that you have a book to escape into for a time.
Hehehe, I like this one.
Swistle, I feel for you so much on the hard decisions and unexpected advice. All I can think is that I’m so glad you’re such a smart and tough family.
I also liked this advice Martha Stewart gave in her reddit AMA last week, to a fan in the hospital: “We are all faced with serious challenges during a lifetime. I hope yours is not too serious and that you’ll feel better soon.”
BWAH!
and now I have a new favourite joke :D
(still two years later)
(I’m so hip with this whole Keeping Up With My Peeps thing)
I hate those decisions that you just have to make, and there’s no way to know if it was the “right” decision until later. I was just talking to my husband about that last night. Let’s just say that almost a decade ago, we made a financial decision that seemed like the smart thing to do at the time (and knowing what we knew, it was! Experts agreed!). It turned out to have been a terrible decision, of which we are still reaping the financial consequences (and in a way, we will be for the rest of our lives, as it has set us back significantly from some big goals). When my husband gets frustrated about it, he tends to say, “That is the dumbest decision we’ve ever made” and things like that. I’m always trying to point out, “No, it wasn’t a dumb decision. It seemed like a smart thing to do at the time. It was an unfortunate decision. There’s a difference.” Ugh.
My work fridge has half of a red velvet cake in it. I wish I could bring it to you and have a nice, cheering/commiserating chat.
This stuff is so hard. I don’t think in this situation anyone would expect you, as a parent with no medical training, to “know what is best for your child.” I actually think in MANY situations (not just medical), parents don’t know as well as other people — usually professionals with relevant areas of specialization — what is best (and as such it drives me NUTS when people say that, because it feels like a blame-shifting thing and don’t we have enough pressure on us already??). We do the best we can with the information given to us, but ultimately we can’t be the arbiters of every single thing that involves our children.
Anyway, I hope that you can find ample distraction and soothing today. I thought the suggestion of doughnuts AND Target clearance items was a good one. Lots of love and support to you.
I try and tell myself in situations like these that it doesn’t do anyone any good to worry about the unknown. That I shouldn’t waste the energy worrying about facts that I don’t have yet especially when the outcome could go a number of ways, and that if I do want to worry I should focus on the facts that I DO have. It sometimes works and sometimes doesn’t.
Maybe you’re right…let’s just have some donuts.
So, I’m a stranger on the internet but I’m sending you a hug and all of the positive energy I can right now via my computer screen.
Also, if we’re telling jokes: why don’t giraffes drive cars?….
…because that would be hazardous to society, duh :)
I also enjoy:
“Ask me if I’m a duck.”
“Are you a duck?”
“*thoughtful, considering pause* No.”
A man walks into a bar. Ouch.
I just laughed so hard I cried. Thank you so much for that.
So, my go-to thing right now is Sleepless in Seattle. I’ve watched it so many times I can recite it, it’s like comfort food. And I’m reading Jane Austen.
Rene Descartes walked into a bar. The bartender said, “What’ll it be, Rene, the usual?” Rene says “Eh, no, I think not” and disappears.
I hope you’re surrounded by a lot of comfort right now.
I’m replying specifically to you, Swistle, because I want you to read my joke. It’s the best joke in the history of ever…here it goes:
What’s brown and sticky?
A stick.
*chortle guffaw*
Ok, so someone shared my stick joke already (note to self, read comments thoroughly). Here goes round two…best joke in the history of ever:
Did you hear about the dyslexic devil worshipper?
He sold his soul to santa.
(Swistle, I’m so so sorry about the suckiness. Maple donuts are my personal favourite, and if I could I would mail you a baker’s dozen).
Oh, dear. I’m afraid I’m one of those people who assured you that you know what’s best for your child, but you’re right–we don’t, always. It’s easier for me to say that, five years in to a diagnosis, but it’s much harder to know how to proceed when you’ve just been handed life-changing news. Parents are on the front lines and see our children’s reactions to things/medications/foods, but you are absolutely right that sometimes we don’t have the faintest idea of what’s best. The meds for Crohn’s and colitis are scary, and what works for one person might not be effective for another so you’re risking side effects for a solution that might not even work, and that sucks.
The whole thing sucks, and even though I want to empower you to be your child’s advocate I also know from experience that sometimes we’d rather curl up in a corner and not think about it at all. So, please, eat a doughnut (plain glazed is my personal favorite) and for a few minutes, think of nothing but how delicious that doughnut is and rejoice in your ability to eat it.
About the only joke I can tell reliably:
Knock, knock.
Who’s there?
Lettuce.
Lettuce who?
Lettuce in, it’s cold out here!
What makes it funniest for me is my middle daughter’s retelling of the joke at about age 3, when she used “salad” and “lettuce” interchangeably:
Knock, knock.
Who’s there?
Salad.
Salad who?
Let us in, it’s cold out here!
Maybe this page (of “Dumb Jokes that are Funny”) will help: http://theoatmeal.com/djtaf/
This one got a laugh/groan: What’s the last thing that goes through a bug’s mind when it hits a windshield?
(its butt)
Ha! I had to read that out loud at work and my colleague said, “That joke is so awful it’s awesome!” Thanks for sharing!
I am not remotely helpful or soothing but I am highly empathetic re: “But nothing horrible is happening to US right NOW, so there is no need to vividly imagine what it would be like if it WERE.” I don’t even need it to be something that happens to real people, my brain will gladly use fictional tragedies to torture me. (I really like The Accidental Tourist! Except that I now picture someone shooting my children in the back of the head several times a day! At one point I actually had to tell myself that crime rates were higher in the 80s!) Anyway. Almost every child-related decision is hard for me, so I can only imagine that health problem decisions are twenty times harder and that really, really sucks. I’m sorry. I hope you get a lot of uplifting advice from readers who are better at that sort of thing.
What did one snowman say to the other?
“Do you smell carrots?”
I have anxiety issues and after therapy (and meds), have begun to remind myself that I should do the best I can do with what I have at the time. It is all I can control. Sometimes, the initial direction is not always clear, but at some point after you make the decision, you have to move on. I hope you feel settled soon.
Also, I love the jokes!
I have narrowed my comment down to this: I love you Swistle. I’m not a hugger but today, if we were in the same room, I might offer a hug.
And a donut. I would definitely make sure there were donuts. Or See’s candy. Did you know that I don’t have a favorite See’s candy? My hubby and both kids have favs and so MIL sends them from CA for all occasions (I have yet to inform any of them that they are available any other way) but I get none. I’m not upset about that, as I have mentioned, I don’t have a favorite. With all the other garbage I eat, this really isn’t a problem. I’m just on a See’s tangent…
You are doing the right thing simply by moving forward exploring treatment options. I could tell you some “my husband’s coworker’s son” or “my sister’s college roommate” stories, but will refrain with a mighty effort.
My 4 yr old told me this week he liked his underwear so I asked why. He said, “Because it has a pen!s pocket. Does your underwear have a vulv@ pocket?” I about died laughing.
I don’t feel like I can say anything other than sending you soothing thoughts. So just…*HUGS* and doughnuts.
If we really were meeting in a coffee shop, I’d probably want to sit very close and pat you every so often. It’s what I end up doing because these things strike me dumb.
Well, unless I knew that you hate that. Then I wouldn’t.
Lots of candy seems like a fine idea. And yes doughnuts are so good for this application, too. I love the heavy, dense cake kind with a coating that mostly soaked in but left a little crispy glaze on the outside. Yes.
1. The world is a terrible place. We just have to do the best with the tools we have.
2. I’ve been meaning to tell you about some brothers I grew up with. Their names are Thomas John and John Thomas. Tommy is the older one. The dad is named John, and I’ve always assumed the middle name is Thomas. Isn’t that…really weird? Tommy was my brother’s best friend in 5th grade. Then he was a drug addict and ran over a bicyclist in a weird hit and run and eventually had to go to prison but first he posted all these weird semi-nude portraits of himself on facebook in like…nothing but chaps and a cowboy hat. With a lot of painful THIS CANNOT BE REAL introspective poetry about cars.
3. My method of dealing with stressful situations is Distracting Stories.
4. I really HAVE been meaning to tell you about Thomas John and John Thomas.
Jenny, have you heard that “John Thomas” is a slang term for the, um, male appendage? Makes it even weirder, huh?
I HAVE NOT HEARD THIS
My favorite cheesey joke-
What did the Mama tomato say to the baby tomato?
Ketchup!
In a similar vein, a tomato and her son are watching a scary movie together, and the mom says “Don’t worry dear, it’s not real ketchup.”
When my son (8 now) was a baby, the pediatrician told me all about his milk/soy protein intolerance and said “no more breastfeeding, let’s try formula.” I sat there in her office and argued with her and flat out refused her medical advice. I won. When my daughter (now 4) had the same thing, the doc said “you’re my expert, can you make me a list of foods I can hand out to other breastfeeding moms with this issue?” I felt enormously empowered challenging the doc and trying things my own way. Fast forward years ahead. Doc wants to take out tonsils, I refuse. He’s 8, he still has tonsils and alot less strep these days. There is a time and place to challenge the docs. Sometimes it turns out well and sometimes its just part of the process of learning and acceptance before you try the maybe but probably not fatal medicine. Feel your way through and go with your gut. And I always have a bear claw or frosted brownie when I’m at a cafe. Wanna split? Panera makes really delicious brownies. No splitting- you need the whole brownie today. I’ll get a latte. Mmmmmmm, better. Hugs.
My sympathies, Swistle. I am wishing the best for you and Edward. This coffee shop is crowded with everyone wishing the best for you.
I used to belong to a mom’s forum, and the keyboard of one of the frequent commentors stopped working right. The “u” would write as “m” instead. Her frequent “hugs to you” became “hmgs to yom” and it sort of became our mantra. Therefore:
Hmgs to yom, Swistle.
That should be a t-shirt – “Hmgs to yom.”
:)
Sending warm thoughts and hugs and virtual doughnuts your way. This is just plain HARD. The difference between thinking of this stuff rationally in the abstract and going through it with your child is ginormous.
Even (especially) in the the middle of your tizz (a great word!) you write about this so eloquently. I especially liked this: “the self-administered-medication-only concept of thinking of how many other families at the children’s hospital would want to trade places with us” AND the whole bit about (what we consider to be) hooey options and how we start to investigate them when we are desperate for help for our children (been there, done that).
You are absolutely right – there is no way to know the best course of action in these awful situations. We do the best we can with the little information we and the professionals have and then we just ‘do the next thing’, be gentle with ourselves, and cling to the fact that the fog will lift eventually. Hang in there.
Just offering my commiseration. My daughter had a skiing accident last week, suffering a broken leg requiring surgery. Everything went great as far as surgery and recovery but the medication she is on for pain is the one that every heroin overdose article you read (and there are SO MANY lately) refers to it as the gateway to heroin addiction. OH MY GOD. Her pain is under control which is so important for her recovery, but am I possibly subjecting my daughter to a lifetime as a heroin addict? My husband and pediatrician point out that used for a short period of time to manage pain it is perfectly safe, but google turns up all kinds of horror stories.
I am glad to hear you got a diagnosis for Edward, and wish you strength as you navigate this unfamiliar territory.
Hugs to you and everybody in your family, Swistle, but an extra couple for Edward.
So, if we lived in the same town – which I am pretty sure we don’t! – I would bring you some of the artisanal doughnuts from my favorite place in town. They use the best ingredients and the doughnuts come out in small batches throughout the day. It’s the kind of place where somebody like me- an avowed indifferent to the plain glazed kind of doughnuts that set some people to drooling – can finally understand the fuss about what a plain glazed doughnut can be at its best.
My favorite from this place is probably their Strawberry Cheesecake doughnut, but their special this month is Dublin Double Chocolate Stout and I haven’t gotten to try it yet.
My son has an auto-immune disease and the treatments that seem to work sound like the one you’re contemplating, side-effect wise. At 10, he’s too young to take them yet, which is fine by me because the decision to start him on them or not would scare/paralyze me. One of the things the doctor said last year was that he’s got this disease at a great time, because by the time he’s old enough to start the treatment, the drug companies will have figured out the good parts of the drugs and minimized the side effects or at least have figured out which course of treatment is the best. I hope that’s true, for your son and mine. In the meantime, I’ll listen to all the ‘advice’ and anecdotes from well-meaning people and take it all with a grain of salt-ed chocolate caramel doughnut. :-)
If I were you, I’d go to Target and get a full fat, full whip Starbucks mocha and wander the store for an hour and buy some frivolous crap :)
Sending lots of good thoughts your way!
I have nothing. But! But!
When I have empty air space in my head (I don’t know how else to describe it), I end up singing the Beatles “Yellow Submarine.” IN RUSSIAN.
I empathize with how overwhelming the situation must seem. I don’t think any words of mine would make it easier, but I’m good at dumb jokes!
What is brown and sticky?
(a stick)
Oh no! I totally thought I was the first to share this one. I made such a show of it too, earlier on in the comments. Oh well, it’s the best joke ever, it should be shared twice ;)
I can so relate. My husband and I are going through something similar with his health. We have ups and downs as we struggle, but as many people said; it truly is one day, or one test, or one pill at a time. He wonders if he is doing the right thing and I’m just hanging in there sometimes. But then we do forget about it for days on end and can laugh and live as normal! Reader’s Digest jokes really help!
I have a funny story about a bad joke. My college boyfriend was the oldest in his family and when we were dating his youngest sister was 3rd – 5th grade. This was the era of the horrible “dumb blonde” jokes and one day she found a whole list and was reading them to the entire family. Everything was going great until she said “How do you know a blonde has been using your computer?” We all said, “I don’t know, how do you?” She answered (reading from the paper) “because there is lipstick on the joystick.” I wanted to crawl into the floor and DIE. Their father was super strict and ashen faced. Thankfully, their mother and the other siblings were laughing hysterically. The best part was that younger sister kept saying “What’s so funny? I don’t understand. What does lipstick on the joystick mean?” That just made everyone laugh harder. Her list of dumb blonde jokes magically disappeared after that!
I think the hardest thing about illness (your own or the illness of someone you love) is that you can’t control it or foresee everything that will happen. We spend a lot of time controlling our bodies with vitamins and healthy foods and exercise and meditation and Fitbits and No-Doughnut November and makeup and Spanx. But illness reminds us we aren’t in control. It’s totally infuriating and shitty. And I am so sorry. We make our best decisions using the information we have, and that’s what you will do.
How did the hipster burn his mouth?
He drank coffee before it was cool.
I’m just so sorry you are having to deal with this. I have nothing helpful to add, not even a joke because my internal joke memory craps out at the worst times. I wish I could make you some fancy cocktails with pretty garnishes and watch silly shows without any stress or drama in them. <3
I will chime in on the topic of doughnuts – I hear Dunkin Donuts’ St. Patrick’s-themed doughnut filled with some sort of creme and mint and chocolate is delicious, and I myself intend to try one this afternoon.
My favorite knock-knock joke:
Knock knock
Who’s there?
Dwayne
Dwayne who?
Dwayne the tub, I’m dwowning!
My first thought was, Oh! I’ll tell her a joke! My second thought was, Or maybe some zen advice. I see others have beat me on the joke, and the zen advice — I’m not sure if that would help or not. So I’ll go with a joke anyway. I hope it’s not too colorful. So two brothers get up one morning and they decide they’re going to start swearing. They march downstairs for breakfast and their mom says, “Good morning! What would you like for breakfast?” The first brother says, “Aw hell, I guess I’ll have some pancakes.” Whap! The mom slaps the brother upside the head and sends him to his room. Then she turns on the other brother and says with a scowl, “Well? What do YOU want for breakfast?” “Well,” he says, “I sure as shit don’t want any pancakes!”
All I have for you is an internet hug and a really, REALLY bad joke:
What did the male fly say to the female fly?
“Pardon me, Miss, is this stool taken?”
All I have to offer is commiseration/fretting about how one just doesn’t KNOW and if you make the wrong choice it’s not only wrong with possible consequences, but the consequences are your fault . ACK!!! Most terrifying and bewildering part of parenting so far.
Also I hate how medicine is not really a science! It is scientific, and science based, sure. But it is a lot of art and guesswork and that maddening/terrifying! My husband and father have in past been frustrated/dejected by patients who get upset when there isn’t a cure or a right answer. Which I understand – they have training and skills and experience but they aren’t magic. But also, RIGHT ANSWERS PLEASE! Definitive, right, workable answers!
ACK.
(By “not a science” you understand I mean, not definitive, yes? Am typing on tiny phone keyboard.)
Can we have an honest discussion about doughnuts? Because, in theory I love doughnuts, but when it comes down to picking a doughnut, I always go for chocolate glazed cake doughnut and I get all disappointed so I have to have ANOTHER doughnut and it is usually a sprinkles doughnut, and then I’m EVEN MORE disappointed until finally I realize I just wanted a chocolate long john and I eat that too and then I go into a crazy sugar panic spiral and everything is terrible and WHY did I eat 3 doughnuts?! And I decide I hate doughnuts until faced once more with a plate full at the office.
Big hugs and donuts to you Swistle. One thing that occurs to me…maybe think of this like childhood. A diagnosis comes with stages too. Sometimes those stages are paralyzing because you are sure no matter what you do you are going to screw the kid up, but those stages pass, and there is always some new and crappy stage, but there are also the “Oh thank goodness my kid is finally capable of pouring their own cereal and I haven’t even THOUGHT about how nice that is” stage. So here’s hoping that first stage goes by quickly, and you find the things that work to get you both through it.
My coping tool: I remind myself that in the entire history of civilization, worrying has never changed one.single.thing. And next time, I’m going to follow that thought with the reminder that laughter is the best medicine and come here and read these wonderfully stupid jokes. Big hugs.
Swistle! If I’m ever incapacitated during a discussion about popoulation vs. individual risk, I’m leaving you the keys to my blog and twitter. You have communicated it all very well. I’m so sorry you’re dealing with it, but I do think you have a very reasonable grasp on the issues. All you can do is play the statistics, and hope you don’t end up on the wrong side. (which, well, you PROBABLY won’t!) And it is ABSURD that a) the professionals don’t actually TELL us the statistics in a useful way, and b) that they pass the buck on decision making, blah blah blah CYA.
When I get myself well and truly worked up about all of this, both generally for the world, and specifically for my own medical stuff, I have to look at soothing pictures of baby animals on the internet, and eat some cookies. Good luck, my dear.
This sounds so stressful. I am so sorry that you and Edward and your family have to deal with this.
I don’t know whether this is helpful or not, but: remember that you recognized that something was wrong and pursued it until you had an answer. You are so attentive and watchful, you will be able to see what things are working and what aren’t, and you will have the courage and wherewithal to seek out other things and talk to his doctors. I know someone with Crohn’s who wasn’t diagnosed until her 40s, and her family thought it was all in her head until that point — Edward will never have to deal with something like that.
Okay, onto doughnuts. Has anyone actually tried a cronut? I’m skeptical. Croissants are already delicious and buttery — it seems like deep-frying them would just obfuscate their flaky delicacy. But I’m willing to be proven wrong.
The fact that you wrote obfuscate made me really, really happy.
Cronuts are amazing. I would eat a cronut every day if my jeans could stand it. And I’ve only had the ones my grocery store bakery makes. I bet a fancy bakery could really knock your socks off.
I know this is all kinds of wrong, so no one flame me, but I bet you snort with laughter if you have a twisted sense of humor like I do.
Knock Knock
-who’s there?
Little Boy Blue
-Little Boy Blue who?
Michael Jackson
(ok, back to my hidey-hole)
Wow. That is totally how I’m feeling about child #3’s ADD diagnosis and the to-medicate-or-not decision my husband and I had to make. STILL don’t know if we did the right thing and totally do NOT want to discuss it with anyone–let alone the teachers/school!
…And even the ear drops I just had to get for child #1’s swimmer’s ear!
Donuts are awesome. I had the Dunkin Donuts Oreo Mint one the other day, and it was a bit sweet, but it did hit the spot.
Big hugs.
There is nothing nothing worse than something scary being wrong with your child. I am so so sorry. Eat all the chocolate.
Also, what works for me in these times of high anxiety is just not thinking very far down the road. Take it one little bit at a time. And Xanax, that also helps.
What did the fish say when it swam into a wall?
Dam.
My oldest child had a really bad week last week and was sad, angry, disappointed, all of that, so, naturally, my week last week was also pretty bad. Based on this experience, I fully agree that 3/4 of a pound of Sees candy is the minimum recommended dosage to treat worrying about your kids. I need to pick up some “medication” today.
I’m sending lots and lots of hugs. And doughnuts. And wine.
As I quickly cruised through the comments, I realized that jokes were being told (did I miss something? I’ll go back and see once I’ve typed this) so I’ll share the very first joke (that made sense) my son told me when he was small (it’s also the only joke I can actually remember from start to finish):
Why do cows wear bells?
Because their horns don’t work!
(Imagine a teeny, tiny guy telling you this – in all seriousness – and then it’s funny)
My 5 year old thinks Carmen Sandiego has a child (thanks husband!), but that the child is off somewhere being a child and doesn’t know what their mother is doing. We have a children’s book with a slightly similar theme (Burglar Bill), and last night my daughter asked me if I used to be a thief.
Life is crazy.
My preferred doughnut method is to buy one of every kind, and then eat small portions of each, cutting off slices w/ a knife so as not to contaminate the ones I don’t want to finish. See also: how I eat a box of mixed chocolates.
Love and hugs to you guys! This is so tough. I hope it becomes the new normal very soon!
My dog was once in a test group for a new drug (please note – I’m not equating a dog with a child, just telling an anecdote), and the vet explained to me that I must tell him ANYTHING out of the ordinary that happened while she was on the medicine, no matter how mundane that thing was. He told me that if, for instance, in a group of 1,000 dogs not taking the medicine, you would expect 3 to seem drowsy at some point over the course of 2 weeks, and if 4 out of a group of 1,000 dogs actually taking the medication seemed drowsy, they would have to put “may cause drowsiness” on the list of side effects. I told that to a friend whose husband is a doctor, and she said that is why her husband tells her not to read the extensive side effects portion of drug labels.
Also, life is, in fact, hard, especially when trying to decide what to do for one’s child. When my daughter complains her tummy hurts, I never know whether to send her on to school or not. Is she sick or just anxious? If she was running a fever, it would be easy to know what to do. Aaargh.
Keep plugging along, you’re doing great!
Haven’t read all of the comments but
I MUCH prefer to be on the “Oh, THIS is what worked for US” side of any diagnosis.
Also: I feel you. Our son has some issues that require periodic medication consideration of the “I cannot BELIEVE you would give your child THAT” variety. And my response is almost always–well, we AREN’T because they haven’t worked but if they did, I would be.
I have to have a painful, invasive test for a possibly fatal disease in a couple of weeks and this topic and the comments have been incredibly helpful. My husband pointed out to me the other night all the times we have imagined the worst and the worst has never once been the outcome. Recently, we took a trip and one of our cats disappeared. The cat sitter was sure it was gone for good and so were we, but when we got home he was waiting for us by the front door. It was helpful to be reminded that I have a tendency to try to protect myself by trying to think of/ preparing for every, awful outcome. It always just makes day to day life worse and everything is always okay. I have also learned from you all that I need to, no, deserve to, eat more goodies.
My favorite donut is a Bavarian cream.
I’d totally share one with you, if I had one right now.
Nicole from GirlinaBoyHouse and I have this thing where I’m really bad at making emoticons with computer keys, and once when I tried to make a heart I did >3 instead of <3 which looked like a bum instead of a heart, so now we say "heart bum heart". Thus: my bum hurts for you right now. I wish for the best possible outcome for you and Edward with all my bum. Love, Allison
“With all my bum” made me laugh suddenly/hard enough that I started choke-coughing.
I hate stuff like this, and I hate that I feel like, in the end, all of the responsibility for the choice rests on ME, so, if something goes wrong, it’s MY fault!
I have had to make scary medicine decisions for various of my children, and there were a few comforting thoughts I found: 1.) We had to go in frequently to check in and report on any side effects, so, between me watching and the doctor asking about various things regularly, it felt like attention was being paid and we were likely to catch anything that needed to be caught. 2.) Children are resilient, so, if we noticed something going wrong, which we were likely to since we were paying attention, chances were good that the child would be fine in the end, and 3.) We can only do our best. Sometimes there is a right or wrong choice, but, often, it seems like there are better or worse choices and the only way to find out which is which is to try something and then try another thing and then try another thing until we’ve got it narrowed down a little.
Since you are only taking the minimum therapeutic dose of See’s, I recommend adding some quality ice cream to take care of any deficiencies the chocolates are leaving.
Am really, really unsure if this will be helpful at all. Am a microbiologist (not an immunologist) and am constantly reading journals. Read a hypothesis some time ago regarding autoimmune diseases that basically states that developed countries are too hygienic and does not offer enough challenge for an immune system that has evolved in the presence of disease and parasites.
If you google “helminth crohn nih” you’ll pull reputable, peer-reviewed, scientific papers on the use of helminths to treat autoimmune disorders in general, and Crohn’s in particular. Know it’s odd and may seem gross, but medical practices use leeches to restore blood flow and maggots to debride wounds.
Hoping for the best for you and your family. Also hope you find more information helpful rather than overwhelming.
I’m so sorry – trying to sort through this stuff while you’re scared out of your mind is damned near impossible. It takes time. The choices may not improve, but your ability to work with the choices available will improve. And here’s something that got lost in the fear when I had to start taking immunosuppressants for ulcerative colitis — when they work, they let you live a pretty normal life without having to think much about the disease, or pain, or “other” symptoms, and that’s huge. I still worry about the Ominous Potential Side Effects, and I hate having this stupid disease, but I’m so happy to be (almost completely) healthy that those things are usually background noise. The amazing progress researchers are making with autoimmune disorders is encouraging, too.
I wish I could hand you a glazed old-fashioned sour cream donut with an Irish whiskey chaser, and tell you fourteen Ole and Lena jokes in a row.
These comments are great; you have such a wonderful group of readers. I am feeling exactly the same way over giving my child a medication for a neurological issue and I ate a very large bowl of chocolate ice cream with cool whip and chocolate chips today. And half a loaf of cinnamon bread. And possibly a few pieces of artisanal chocolate with ginger centers. Hugs to you.
What do you call a broken boomerang?
A stick.
The “smell mop who” joke made me laugh out loud.
Umm..so a horse walks into a bar. The bartender says “why the long face?”
Why do pirates take so long to learn the alphabet?
Because they can spend years at C!
(Tell that joke to anyone and they’ll always guess “Because they always get stuck on Arrrrrrr!” Every time.)
And here’s one that falls under the “so bad it’s good” category…
Two men were lost in the middle of the desert, about to starve to death. They decided to take turns going out to look for food and water. The first man went out and returned the next day looking excited and happy. He said to the second man, “You wouldn’t believe it! I walked east for ten miles, and in the middle of the desert there was a huge tree with slices of bacon growing on its branches! I wanted to get close enough to take a piece but I decided wait until you could see it for yourself.” The second man was skeptical, of course, and told the first man that he must have been hallucinating since bacon clearly doesn’t grow on trees. But he was so close to starvation that he was willing to try anything, so went out the next day in search of the bacon tree. He walked east for ten miles and sure enough he came across a huge tree in the middle of the desert! Upon closer inspection, though, he realized that the tree was growing ham, not bacon. And there was every kind of ham you could think of…cured ham, black forest ham, honey baked ham, you name it. He reached out to grab a piece, but as soon as he touched it a bunch of cannons rose out of the sand and started firing at him. Despite his starvation, adrenaline kicked in and he ran away, narrowly missing the cannons’ fire. Once he was out safely he walked the remaining distance back to where the first man was. The first man asked him eagerly if he’s found the bacon tree. His response: “That’s not a bacon tree! It’s a hambush!”
HAHAHAHAHA…okay, that one’s more silly than funny.
It will all be OK. Find doctors you trust and follow their advice. Check out science based medicine blog if you need to reality check things. Breathe. Just breathe.
The most helpful thing I can think of when I start to spin out: just do the next right thing. That’s all.
Every medication and therapy that you try is a drop IN the bucket labeled Finding Out the Best Way to Manage Edward’s Crohn’s. Man it sucks that knowing that doesn’t make those decisions easier or less loaded. Yay for chocolate.
I know you have a new post up about See’s, but I am still stuck back here trying to think of what to say. Hugs to you.
I laughing hysterically here by myself, reading everyone’s jokes. (And taking note of them, to share with the kids after school. Well, SOME of the jokes…)
Something I used to repeat to myself is “Serenity is not freedom from the storm, but peace within the storm.” And putting that into practice can be as simple for me as spending 30 seconds watching a leaf twirl in the wind. For those 30 seconds there is nothing else to think of or worry about.
Doughnuts help. There is a local place of importance called Allie’s Donuts here in RI and we even had their donut cakes for our wedding cake. There’s a flavor for every mood…
And if all else fails, just check out this cat in a hat. And with dreads. And an easel. This is my go-to picture to share with others when they need a smile. :)
http://bitsyandbug.wordpress.com/2014/01/05/mister-chill/
My therapy recommendation is to take two bags of Swedish Fish, put the lime in the coconut (flavored rum, that is), and put on something ridiculous to watch, maybe Ghostbusters or Men in Black. Sometimes I love being able to Google health-related stuff and sometimes…ergh. I hope you find comfort soon.
I’m sorry you’re having to deal with this — it sucks!
My mom and I were pretty freaked out when I was first diagnosed with Crohns, but like I mentioned in another comment, once I got on medication for it my life improved drastically. I imagine it’s a lot easier to make these decisions when the patient is 22 though, instead of a child. :-/
So! Doughnuts! Donuts! Where I live, the Tuesday before Ash Wednesday is not only “Fat Tuesday” it is also Paczki Day! Pazcki is a polish doughnut. It is round and can be glazed or dusted with powdered sugar, and it has a filling — usually a fruit (my favorite is blueberry) but I have seen it with custard or whipped frosting inside. The dough is thicker than a normal doughnut — these are delicious bricks of sugar/fat, not light fluffy things. They are ONLY available in stores in the few days leading up to Ash Wednesday, so it is a special once-a-year treat. Convenience stores advertise them, bakeries advertise them, some people wait in loooong lines for them… it is a real big-deal tradition. Up until a few years ago I assumed that everyone everywhere celebrated Paczki Day but as my high school and college friends all started getting jobs out of state they began posting on Facebook about questing for pazcki and how no one had heard of them.
So I thought I’d tell you about them. :-) Polish tradition has people eating them on “Fat Thursday” which is the Thursday before Ash Wednesday, but in the US we celebrate on Tuesday.
1) Hi! I’m the Coloradan reading through your archives, and this is my first comment.
2) What did the zero say to the eight?
.
.
.
Nice belt!!
3) I get it, as someone a little too familiar with children’s hospitals and the hardness of medical issues and children (I have a micropreemie). You don’t need my permission or endorsement, but maybe it helps for someone to say, “Yeah, that sucks, and I like your approach.” If it does, then pretend I just said that as I handed you a doughnut.
Hmmm. I am sorry you are dealing with this and in favor of doughnuts, also possibly Daniel Silva books (I cannot put them down, they distract me so — in a good way). OTOH, maybe this is not the moment to be distracted and up late reading, and it is true that some of the story lines include things like members of the main character’s family get hurt or killed (not by diseases, or medications either!), so — maybe not.
I think you have just walked into the coffee shop and that I am stammering. Let me go buy us both some biscotti. You like chocolate, right?
Ah, OK, right. Not (I hope) strictly speaking an “alternate approach,” but surely there is a mom and/or Crohn’s patient or two out there who has blogged about living with Crohn’s and making these decisions? Would finding someone else’s first-hand experience and being able to read through it (without it being advice, or a dialogue, or a medical expert giving you choices) be helpful? I guess that might depend where (on whose blog) you landed.
Out here, trying to send doughnuts your way.
I recommend a hot bath, hot tea, and curling up with a Georgette Heyer novel or two (Frederica is a good choice).
Many hugs.
In these situations one coping mechanism I use is reminding myself of all the horrible side effect/outcomes I was absolutely positive I was going to suffer from and then didn’t, to prove to myself how unlikely those horrible outcomes are. Like I was sure I was going to end up paralyzed or dead from the epidural but I’ve had two kids now and I’m still alive and kicking! Or all those plane rides that I took. Okay now I have to stop listing examples because I also fear speaking things into existence, but you get the idea.