2015 was by far the worst year for my entire 31 years on this earth. You may remember that I fell off the planet and didn’t write for the majority of the entire year and that when I came back I promised that I’d explain it all, but the further we got into 2015 and the further we get away from it the less I want to go back through it all. So I’m not going to rehash it. I just decided. Like this second I decided that. However, I proclaimed to my Facebook friends a month or so ago that I would write a book. I wrote about a chapter and stopped because it got too hard to relive events of 2015. I hope that the further we get away from it, the more I can write, and deliver on this book that I’ve promised myself that I would write.
“If you think positive thoughts, positive things will happen”
“You can change the future if you just think positively”
“If you can’t love yourself, how will anyone else love you?”
Have you ever heard these phrases or other phrases like these? Do you think they’re a load of shit like I do? Er, did. Like I did? Let me explain.
Whelp…I’m dating again and because I can’t keep my mouth shut about my butt, I know I’m getting some new hits to this site from potential mates. I’ve talked a lot about dating in some previous posts on Health Central. One about relationship essentials for IBDers, another about dating tips. I figure I’m no ace when is comes to dating so I wanted to reach out to my new visitors with a letter.
So I’m dating. Well, I started dating. Let me rewind.
Dating is a HUGE topic in our community because there is a lot of fear around disclosure and acceptance. In the past I’ve written about dating and my opinions, but I have never actually dated since I was diagnosed with IBD. So all of my theories and advice were pure speculation, even though I still consider it solid advice.
So now I have legit experience in the dating-sphere, and I’d like to share it with you guys. I approached dating cautiously, after all the world is full of crazies. I haven’t actually dated…ever. I was in two very serious relationships for the last 13 years so not only is dating with IBD/jpouch scary, dating in general scared the literal shit out of me. I realize that I tend to talk about my butt to anyone and everyone who will listen, but I also realize that is not great first date conversation. Or at least that’s what I’ve read in forums and other blogs. Hell, I think that’s the advice that I gave in the past.
Here is what I realized…I can’t not talk about my butt. First dates, and even the predating period, it took me a matter of days, if not hours to spill the details on my defunct digestive system. I literally can not stop talking about my butt, and my blog and Girls With Guts. If this was the test, I failed with flying colors. Even if I wanted to hide my history, if just for a few dates, I can’t. My name and face is plastered all of the internet with “butt disease” slapped right next to it. I have positioned myself in a place where my future beau can read details about how I poop, see my fat face pictures, and view graphic photos of my body when it was at its worst. This is my life, there is no hiding it, there is no going back. I get that is scary for potential suitors, but whelp, this is me.
But you know what…not one of the guys I was talking with cared. In fact, many of them talked with me about their own health ailments and it made me realize a few things about the world. First, that many of us are all giant health disasters, and also that people like and fall in love with the person, not their medical records. I’m sure there are people out there who might run screaming from me on a first date, but frankly, I never found that guy. Not once.
In fact, I found the opposite. I have found someone who cares about me because of what I’ve done with the hand I was dealt. Someone who understands and can relate. Someone who I think is really great, and who thinks that the sun shines out of my ass. Actually, I’m going to ask him to guest post so he can tell you himself what he thought when he met me, learned about my butt disease, and MS and why he didn’t run screaming.
So don’t let IBD scare you away from dating. There a million reasons why someone can like you, or not like you, and frankly IBD is probably not one of them.
Something is off in the IBD universe right now and I don’t know why, but I don’t like it. Many of my close friends have been sent to the ER and had hospitals stays for blockages, fistulas and a lot of dehydration. So I’ll preface this with, srsly people. Take care of yourselves. We all need a reminder to take it easy, and to stay on top of our health, and I hope that you take my hospital fun and that of my friends as your own reminder.
So during this period of time I had an interesting situation arise. I would say 90% of my friends have IBD or related health issues. Usually when one of us goes down, be it for IBD issues or life issues, most of us are there to pick them back up. To offer support and to listen to how much life sucks at that moment. But what happens when all of your “pick me up people” are down for the count? How do you pick each other up?
Well I learned that you don’t. I found myself struggling between keeping my own head above water, and sincerely caring for my friends who problems were equally as complicated and sucky. Constantly torn between feeling like a shitty friend and wanting to just be selfish and sick and sad. I would fluctuate between being mad that they didn’t show enough interest or concern in my conditions but at the same time logically understanding why they didn’t and that I was not as supportive as I would have usually been.
So it became this big, mean circle. Where I got sick, and they got sick. I cared for their issues until I had to care about mine. Then I would have less of an interest in their issues, and they’d take less of an issue in mine. Then I would be angry that no one cared as much as I wanted them to. I haven’t confirmed this with any of my other friends, but I almost hope that they felt that same anger, and that I’m not a total asshole.
I am overly sensitive right now. Life is awesome, and I’m doing awesome things but my personal life is a bit of a drag. And it dragged down my health and my attitude all at the same time and I’m working hard to stay on top of it all. But recently I had this power struggle between how I aid my friends and how I aide myself. Quite frankly. I didn’t figure it out. I think I’m past this scenario at least for a while as it seems as though we’re all on the up and up, but damn. That sucked.
I am a planner. Always have been. For most things, my plans have plans and that helps me from worrying and freaking out. I predict all possible outcomes and then plan out what path I’ll take depending on the outcome. I’m a little neurotic about planning, just ask Charis.
However today I realized something.
I don’t plan long-term anymore.
When I got sick I totally lost all my planning power and since I’m so neurotic that was a huge struggle for me. But slowly over time I learned how to just let things happen because I couldn’t control anything or plan for outcomes. Today I was having a chat with my future brother-in-law and he was asking me all sorts of questions about where I see myself in 5, 10, 35 years. And I was honestly like, I don’t know…alive? He was asking me about jobs and where I’d like to be versus where I am, and what I pictured way down the line and I just didn’t have any normal kind of answer. I realized that being sick changed that about me. I’m still totally neurotic about things that I can control and that are happening right now, but anything further than this year is an open book.
Here is what I know:
I want to be happy and healthy and have a job.
There you go. Future planned. I know what kind of job I want (and have), but I don’t know if I’ll always have it or want to do it. I could get sick again and lose my job again, or lose the motor skills it takes to do that job. He asked me if I planned on staying in my house for the forseeable future and I just thought…I hope so. I could lose my house, which I love. He asked me if I was 100% sure I don’t want a family. I learned the hard way that you can never be 100% sure about anything. I don’t plan for kids, I don’t particularly want them but life changes. People change.
It dawned on me that most people have some kind of plan for their extended future. Granted many people out there are just happily floating through life, but the average joe has a plan for the next 10 or 15 years that includes more than be alive and make money.
Is this a chronic illness thing? Or is this a weird Jackie thing? Sometimes I feel like a lost 22 yr old, and other times I just feel like a calm collected adult that has learned to roll with the punches.
I think some of this stems from the generational changes from my parents to me. In my parents generation, you got a job, got married, had babies. You stayed in that house until you could afford a bigger better one, and you stayed at your job for as long as possible because there was a loyalty to your employer and it was rewarded. People didn’t switch jobs the way they do now. Picking a career was “final” and now its more like “what I feel like doing for the next 3 years”. My house is small and old but I love it. One day I’ll make enough money to move out of it, but I don’t think I will. And well, you all know how I feel about babies. “Settling down” isn’t really on my radar because it’s not like I’m particularly wild anyway. Actually last Friday night was full of insanity as I sat alone on my couch watching documentaries and crocheting. True Story.
Perhaps its just that I’m not worried about my future, because I’ve learned its exhausting worrying about the unknown. Or perhaps I’m just up for the adventure that accompanies a life unplanned. I don’t know and I’m ok with not knowing.
I made the choice about 2 weeks ago to switch to a Paleo diet. Since diet is such a common topic among my Butt Buddies I figured I’d let you in on what I’ve been doing. So here are the basics.
What is Paleo?
Paleo is also known as the “caveman” diet which basically means you only eat things that cavemen could have eaten in their time. Seem rudimentary doesn’t it? Trust me there is no pointing and grunting involved and if you’ve ever tried eating Gluten Free its very similar.
Here are the very very basic cliffsnotes:
As organic as you can get. All those hippie terms are now your BFF.
Things that are organic, locally grown, grass-fed, free range, no GMO, ect.
Dairy (except eggs)
Grains (ALL grains)
Legumes (peanuts, and chickpeas, ect)
Fried food/fast food
OR you can use this fancy info graphic to help you make your choices. (Click to view larger)
So that’s it pretty much. Now go and stuff your face with meats and veggies. Well initially this sounds awful and quite frankly scary from an IBD standpoint. The basic theory on the Paleo diet (or lifestyle I prefer to use, because “diet” insinuates that its temporary), is that when cavemen were bee boppin’ around, humans didn’t discover agriculture yet, and because of that we didn’t eat grains. Actually grains are pretty difficult for out bodies to digest, those of you who are GF already know this. And grains are one of the more processed things that we eat daily, and things we are lead to believe are “good” for us. The reality is a single piece of bread is very processed, and most grains honestly do not hold much nutritional value. Sure there is the whole grain argument, but I’m not here to argue, I’m just explaining Paleo.
Why can’t I eat peanuts?
You are free to eat nuts, as long as they are not processed. So that means no roasted nuts, unless you’re fancy and roast them yourself. That means no salted cocktail nuts. That means no peanut butter. Wait…why not peanuts? Because peanuts are Legumes, not nuts silly.
Why not dairy?
Again, cave folk didn’t use dairy products. Hence neither do Paleo lifestyle people.
Ok so what CAN I eat?
You can eat as much meat and veggies as you want. Some fruit but be careful because it has a lot of natural sugar. You can eat eggs, and I eat a lot of them. They key is eating the cleanest food you can. The real complaint about Paleo is the money. Grass fed beef and free range chicken are pricey. Organic fruits and veggies are expensive. But I had this epiphany the other day where I realized that I’m willing spend a boat load of money on fun, and material things (I use the term “boatload” loosely), but not on what I feed myself. What the hell is wrong with me? This is a personal choice, but after what my body did, and the great comeback it made, I’ve chosen to reward it with eating the cleanest food I can find, even if it costs me a damn fortune. My body has 1,000 reasons to fail and crumble, and I won’t let the food I eat be one of them. Also baked goods and deserts are not out. You can use almond flour, or coconut flower for a lot of baking needs. Frankly I cook a lot more, and I have eaten some delicious stuff.
How the hell am I supposed to eat so many veggies? I have a butt disease.
This is going to be the deal breaker for a lot of people. I can already notice that with my increase in vegetable intake that my bowel movements are different. Many are thicker, which makes pooping a little more difficult, but frankly has slowed down my system enough and its kind of nice. And its all about the veggies you can eat. If you can’t do celery, do freaking eat celery. I roast a lot of them, cook them in a pan, ect. I do not eat most of them raw. When I notice things are not moving as nice as I’d like, I use some apple juice to get things moving. I’m only 2 weeks in, but its going well. I slowly transitioned and that helped my system adjust. I’m still having a hard time breaking up with sugar, and I still crave it a lot but I have found a piece of fruit or a small amount of organic fruit juice helps to quench the craving and then its gone.
So how do you feel?
I think it’s really too early to actually say. I’m still fighting sugar cravings but they are lessening. It could be coincidence but I have slept much better the last few days, and I swear I have more energy. I don’t ever feel like I’m dragging ass anymore. When I wake up in the morning, it never feels like a bus hit me anymore. My stomach and intestine have adjusted quite nicely, and nothing I have eaten has given me any issues. I eat meat, veggies and fruit all day now. I eat nuts a lot too but I make sure to CHEW CHEW CHEW. A single nut at a time until it’s a paste. And I’ve lost 2 lbs.
What else do I need to know?
Are you working out at all? If you’re going to do Paleo you need to be doing some kind of activity, because all the protein you’re stuffing into your body will just sit there and turn to fat if you’re not working it out. If you are, it will help turn it into lean muscle and also to help burn fat. What I like most about Paleo is that you can customize it to work in your life. If you wanna be crazy Paleo person you can follow the diet exactly and maybe go a little nuts along the way. For me, I do it as best as I can, and know that there are some vices I won’t give up. I like to drink Cider (Angry Orchard, or Strongbow). AO is Gluten Free but its still got a boatload of sugar….every once in a while. I”m ok with that. I lightly salted my roasted veggies with kosher salt. Some people can’t give up cheese. Some people can’t give up diet Coke. Thats fine. The goal is not to make you miserable, its to make your life healthier and if 95% of what you eat is good, clean food its probably an improvement from what you eat now. Frankly, giving up a lot of the grains and things hasn’t been that hard. Sure, I love me some pasta covered in cheese, but I can live without it and it doesn’t make me sad, but you better believe when my Mom makes an apple pie I’m eating it. And then I’m going to the gym. Also when it comes to eating “clean” meats, I have learned it’s not only that they are expensive but they are hard to find. If you can’t find it, or can’t afford it, its ok to buy meat from Kroger. Again the goal is to eat as clean as possible, whatever “possible” means for you.
Also it really works for me because it lets me eat when I want and as much as I want. Its not horrible to skip meals, and it doesn’t mean tiny portions. It means if I don’t eat lunch, fine, who cares. A lot of the food can be pre-made, and frozen, so all you have to do is thaw it and then stuff your face which works well for me. I pre-cook a lot of meals and then I don’t have to worry about “whats for dinner”.
Here is another info graphic with some more info:
As usual, I’m about 3 weeks late to this party. I tend to avoid controversy while its happening, and then right when you think its over and everyone has forgotten…BAM. Here I am all, “I have an opinion and I’m sure its going to piss you off”. You all know what I’m talking about, right? The CCFA ad campaign.
I’m not going to be delicate with this one.
I don’t understand what everyone is all butt hurt about. Period. Its as simple as that. Don’t we have anything better to do than bitch about the first ever IBD awareness campaign? This all goes back to my theory and post about Invisible Awareness week. This is marketing….real marketing. Perhaps its just because I am a marketing professional but I understand this campaign. I’ve seen many people say that this trivializes IBD. People asking “Why aren’t they showing what its REALLY like to have IBD?”
Well…here’s why: Its scary.
If you want any kind of response from the masses you can’t scare them. Think about other large disease awareness campaigns, like Cancer and AIDS. Do they show you people literally dying in hospital beds? No. Why? Because its fucking scary. Commercials for St. Judes, show kids with cancer…in the hospital but happy and smiling. Laughing and hugging cuddly teddy bears. If they showed kids post their chemo treatments, when they are sick and puking their guts out do you think people would be receptive? No.
Do you think the families of those children are upset that the “real” side of cancer isn’t being shown? Hell no. They are happy to get donations to St. Jude to help them care for their children. Lets talk about those commercials that ask you to donate your money to the starving, sick kids in Africa or wherever. They give you a sob story about children that can’t afford food or clothes, and who have no parents or education. They show you sad, adorable children. Do they show you the reality? Children emaciated and literally dying in the streets? Do they show violence over limited food supplies? No. Why? Its scary.
The point of the campaign from the CCFA was to raise awareness. Every ad had the letters “IBD” on it and if nothing else its getting that term to the masses. And quite frankly, everyone pissing and moaning about it, just raised more awareness for IBD because your blog posts, and reposts of those photos just make the terms show up more in Google. Perhaps behind the scenes, they were hoping this campaign would be controversial. Controversy raises conversation, and conversation raises awareness.
Think about this campaign as a first step. It is step one to telling the world about IBD and telling our stories. You can’t scare the world or else they won’t listen, won’t donate, and won’t give a crap. I asked a few people I know who don’t have IBD what they thought about the ads, because everyone keeps saying “People will think that this disease revolves around the bathroom” (News flash: It does). Well the first person I asked, said, and I quote,” I don’t get it, so those people have IBD?”
I think we’re all a little sensitive to the whole “being tied to the toilet” thing, and as a result we think that everyone else must think that IBD is a toilet disease. That’s why I tell my story and why you should too. Talk about it…tell people what its like. Why does it seem like this is one of those “I can make fun of my sister but you can’t” things? In the IBD community we make butt/toilet jokes all the time. We do it because its funny, and because its a coping mechanism. I learned to laugh at this a long time ago…but here’s the thing. The ads don’t make me laugh. They aren’t funny. No one is making fun of us or trivializing anything. Why can we talk about our realities (being stuck in a stall) but no one else can? And if you say because people will just think its the same as IBS then I’ll drop kick you in the face because I have NO Idea how anyone can deduce that from these ads. “IBD” is written all over them, and the info on the bottom gives more info about IBD. I have no clue where the hell IBS comes into this, and I think its just another reason for people to complain about things they can’t control. Was every IBDer consulted on these ads? Nope. Should they have been? Nope. Why? Because you can’t please everyone.
Do you really think that a full account of what IBD is like can be depicted in an 8×10 printed ad? If so, make one. Hell, I’ll fund it and shop it out to ad agencies if you think you can accomplish the following:
- A non-threatening or scary account of life with IBD
- Information/stats/facts about IBD and what it can really do to your body
- Images depicting IBD in a non-offensive manner and in a way that won’t embarass patients or viewers of the ad
- Resources for those who have IBD
- Individual stories about how it affects people differently
- Information about how IBD can affect your mental state in addition to your physical state
- A list of all other ways IBD can affect your body
- Information about PICC lines, TPN, NG tubes, surgery, ostomies, and JP drains
- A list of all the side effects of the medication
Gee that sounds like an awful lot, right? This is a list that I complied from those who are complaining about these ads. I’m telling you right now, its impossible. You cannot fit all of that into a single marketing campaign. Since you can’t, does that mean we shouldn’t market IBD at all?
With all due respect…fuck no. I want people to know about my disease. I want them to know its name. I want them to know that it DOES involve a bathroom so when students in a classroom bolt out the door, their teachers don’t punish them. I want people to know that IBD can alter a life. To me…that is a good starting point and these campaign do exactly that.
The NEXT ad campaign perhaps can give more information. Yes…I said the NEXT one because I’m hoping this is the beginning of many campaigns, campaigns that will make IBD a household name and one that will no longer keep us in hiding. So that we can Escape The Stall…whatever your stall may be.
I think that the CCFA took a risk on this campaign and I think it was worth it, and if you don’t like….fund your own damn campaign or find someone to do it pro-bono. Go find your own celebrity with IBD and have them jump on board to be your spokesperson because that is what awareness takes unfortunately. You have to make your disease sexy. Right now IBD is not a designer disease…but with this campaign it can be. That sounds shitty, right? Well that’s marketing people.
I know many people feel like this campaign depicts our disease in a negative light. Whelp….get over yourself. Period. This campaign is not about you and its not about me. Why? Because it affects us all differently, so one blanket campaign is not going to tell your story or mine. Its a collective voice just telling the world that IBD exists and a lot of different kinds of people live with it.
I’m glad that they took a risk, and put these ads out there. All that I see with these ads is a chance for conversation. A chance to talk about it, share your story, and raise awareness. Whether you like the ads or not, they have done exactly that.