I wanted to talk to you guys about employment and how to tackle the medical history exposure part of it. I am only going to speak of my experience, as that is what I know best.

More than likely, I’ll be breaking this post into two parts because if I don’t, I know you guys won’t read it all, and this is about to be some inspiring shit ya’ll.

So the first part is how I’m going to tell you that I totally understand employment and financial woes.

Before I was diagnosed with UC, I was working a mediocre job that I liked, but didn’t love. It paid my bills – barely – but I had enough money and freedom at my job to live a comfortable life. Then I started to get sick. And then I got sicker.

My job performance lacked and for a while my employer understood, but as I got sicker and I wasn’t as good of an employee as I previously was, their compassion dwindled. I think they thought whatever was wrong with me would go away, but when I had to leave work to go to the ER unexpectedly, which would turn into a week-long hospital stay… they weren’t so understanding.

Then the complications started. The long and short of it all is that I eventually got fired. Yes, I know that is technically illegal. But I was too poor and way too sick to do anything about it at that time. Besides, it opened up the door to grad school. The most important part of this was that I knew that I’d not be able to get another job at that time of my life. I had at least 2 surgeries approaching, and no one would ever hire me if they knew that.

Not to mention that I had already posted to the world that I had Multiple Sclerosis, and by this time I was already telling the internet about the graphic details of my bowel movements. Sure there have been moments where I thought about going anonymous, or perhaps even stopping blogging, in the fear that I would always be tainted by the healthy history I’ve posted on the internet.

But honestly (and this will sound super cheesy), I felt like it all had a bigger purpose. I knew I was helping people from the emails that I would get, and more importantly I was helping myself. I have posted my biggest ups and the deepest downs on this blog… you guys know it all. And most of the time I feel like its just you and me butt buddies. But I forget the harsh reality that the world is always lurking. And frankly, smart employers are looking for potential employees by Googling them.

There is that old adage that “If they won’t hire you because you’re sick, you don’t want to work for them anyway”. Right. Thats easy to say when you don’t need a job. The reality is that there is stuff on the internet since 2006 about my medical disasters and much more now specifically about my issues with my diseased ass. Oh..and there is that. Have you guys noticed my vocabulary? Its not like I can use this blog as a writing sample, and there is the whole ‘wanting to die’ thing that I so publicly pushed to the world. Sometimes I think I paint myself as a diseased, mental case with a tiny vocabulary.

If I weren’t me, I would have thought that I’d never get a job. At least that’s what I thought until about a year or so ago. I was still in grad school and I had a former teach approach me about a graduate student assistant position through the school. I wasn’t even looking for a job, but it paid my tuition so I said I’d take the interview. Well…I nailed it. I got a job offer that day. You guys, I felt on top of the world. For the first time since I was fired, I was working a REAL job that wasn’t under the table, working on REAL projects and making a REAL “paycheck”. Well…at least this is what I thought. The reality is this is the first time anyone had wanted to give me a job in a long time, and the first time I felt worthy of a job. It did scare me that they’d look me up and see that I was some degenerate swearing butt talker. I had my family telling me I “deserved” the job, but I didn’t feel like that. It was only a part time job and all I could think about was, “Can I even do 20 hours a week?”. But I had this shining moment where I realized that I didn’t get that job because of anything other than they thought I could do it and that I brought something to the table. This GSA position was like a real job, and I wasn’t just a gopher. I did that job well for a year until I graduated and then had planned on trying my damnest to find another job. During that year, I worked hard, played hard and met some fantastic co-workers. No one there knew I was sick, or had been sick.

And when I decided to tell them all, you know what they did? Told me that I was impressive. They didn’t say that my job was on the line or anything negative but that despite my illnesses they respected me that much more. I must have impressed them, because right before graduation, they offered me a full time job at the library. And university jobs are no joke, we’re talking like a real grown up job, with grown up money and benefits and no one gave half a shit about my health history. IN FACT…most of my co-workers donated to Girls With Guts.

I want to also tell you guys that during this time I had many conversations with friends and blog readers about finding employment after you post your crap (literally) to the world. After starting Girls With Guts, it became my goal to work for myself – that way I never had to worry about who my boss was and what would happen if I got sick again. However, working full time for your own non-profit is incredibly difficult. After graduation I had to be realistic in my job prospects…I had to find a job that would pay my bills, and give me some flexibility in my life to be able to run GWG…

Stay tuned..part two tomorrow!

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.

Totally realistic image of a cavewoman

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:

Good:

Meat

Nuts

Veggies

Fruits

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.

Bad:

Dairy (except eggs)

Grains (ALL grains)

Legumes (peanuts, and chickpeas, ect)

Sugar

Fried food/fast food

Processed foods

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:

 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.

Justin in Egypt

Traveling with a J-Pouch can be nerve-racking and a tad more difficult than it is for healthy-coloned folks, but from my personal experience, J-Pouch travel is infinitely easier and more pleasurable than traveling with active ulcerative colitis. I would compare traveling with UC to getting a colonoscopy with absolutely no pain medication or anesthetics while traveling with a J-Pouch is like getting a routine pouchoscopy.

As a comedian, I spend a great deal of time on the road. My last UC flare began in the spring of 2008 and continued until I underwent my first surgery in December of 2010. Even though I feel incredibly grateful that people pay me to tell jokes, my “business” trips were not that fun during those two and a half years. Often, to get to my gigs, I have to take two flights, then rent a car, and then drive two to four hours to reach my destination. Doing these marathon trips while experiencing intense stomach pain and defecating 30 times per day was pretty brutal. There would be times when, after the plane landed, I had to push old women aside as I made a mad dash to the nearest toilet. There were tons of uncomfortable and worrisome moments, but a few will always stick out in my mind.

I’ll never forget the time I was driving from Albany, NY to Canton, NY, when I was in the middle of nowhere and I knew that I only had minutes (if that) to reach a restroom. I’m sweating, clenching every muscle I could possibly clench, and envisioning the worst-case scenario. Thankfully, I spot a gas station, do that uncomfortable walk/run while attempting to keep my butthole closed and just make it to the facilities, barely avoiding having to get the rental car detailed. I know I’ll never make a more satisfying trip to a gas station bathroom. Then, there was the time when I was driving from Milwaukee, WI to LaCrosse, WI and faced a very similar situation. On this occasion, I found myself running through a fancy hotel, hoping to make it to a toilet before I soiled the marble floors of the hotel lobby. I think many of you know that having UC involves a series of close calls and unfortunate mishaps.

A few months ago, I was asked to go on an overseas tour of the Middle East to entertain the troops during the holidays. I would be going to Lebanon, Jordan, Turkey, and Egypt. I immediately accepted and was excited about the opportunity. Since my J-Pouch surgeries, I have resumed my frequent travel schedule and I haven’t had any real problems while traveling. However, all my trips had been domestic and I was aware that I had to take extra precautions with international travel. I would be going to places where the food and water have wrecked the stomachs of people without my issues, and I would be visiting countries where there probably wouldn’t be a surgeon or doctor around who knew anything about J-Pouches.

I returned from my twelve day trip on Friday, and I’m happy to report that I’m doing just fine. I made sure to pack everything that could help me if any J-Pouch related issues arose. I brought Lomotil, Immodium, Cipro, Protonix, and my butt-burn ointment. Because I performed at the American embassy in Lebanon and on military bases in Jordan, Turkey, and Egypt, I had American medical personnel available if I ran into any issues. Also, the military has evacuation plans in place if you run into a serious medical problem so that they can get you to a hospital that can provide adequate care. I avoided drinking the water and tried to only eat foods that I thought were safe.

Making the locals angry!

My trip wasn’t completely problem-free. I experienced some stomach pain that was alleviated after I popped a Protonix and got some serious butt-burn. However, I was more than willing to experience some butt-burn in exchange for such a remarkable, fun, and fulfilling trip. I was able to snorkel in the Red Sea, visit the place where Jesus was baptized, do some karaoke with Russian tourists in Egypt, and joke around with a two-star general from New Zealand. More importantly, I was able to meet and entertain hundreds of troops who were incredibly appreciative to be able to see some comedy while they were away from their friends and families over the holidays. So, even though I became a little worried when the troops stationed in Sharm Al Sheikh, Egypt told me that the food they ate there had given them what came to be known as the “Sharm Shits”, I was confident that the “UC Shits” were much worse and I’d survive if I was to be afflicted with this unfortunate ailment.

If any of you are contemplating any sort of trip or excursion, but are concerned about traveling with a J-Pouch, I strongly encourage you to go on your adventure. Although I still worked as a touring comedian while I had active UC, ulcerative colitis robbed me of so much and kept me at home and in pain way too often. Now that I have a J-Pouch, I am unwilling to let my health situation deter me from living the life I desire (I try to avoid doing anything too stupid, though). I feel like I’ve been given a new opportunity and another chance to truly live. I want to make sure that I take full advantage.

Check out what Justin has wrote for BPT in the past.