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.
Also…I live in Michigan, where the job market is coming back but still isn’t particularly strong. Before I graduated you could often find me talking to my co-workers at school having mini mental breakdowns about how I’d pay bills and how I’d never find a job. A week before I graduated I was approached by the university about a full time position, and I literally thought that I had been saved by some divine intervention. Rather, I had made a strong impact on my co-workers and had done my job well, so they created a position for me to keep me on board. In addition to that, they also gave me a temporary 3 month contract so I could continue to work while they pushed the lengthy university paperwork through. Right at this same time, I had my practicum site ask me about doing some temporary work for them, because again, I had showed a strong work ethic and a knack for archives. Much to my surprise, I was also approached by another company who had received my resume from a friend. This company had nothing to do directly with Libraries or Archives (what I was getting my masters in), but they were essentially an internet marketing company. I love social media, and I know marketing but on paper, I don’t have a ton going for me. And here is the kicker folks…they wanted me because of my online work with Girls With Guts and this website.
Let me write that again. A potential employer wanted me because of my online work with Girls With Guts and this website.
They didn’t pass me over because I talk like a trucker, or because I have a butt disease and a brain disease and because all I do is share the consistency of my crap. They wanted me because I showed that I know the internet marketing space and how social media can be utilized to make an impact. All I have been doing, is what I love, and what I didn’t realize, and what you should all realize is that people are watching you all the time when you have a presence online. They are watching your triumphs and your faults.
So what did I do? I essentially had 3 job offers on the plate. Read that again. 3 job offers despite my health history (which they all were very aware of, in fact we talked about it during interviews), and despite this very blog. Take a moment and let that sink in.
So what did I do? I took the job at the university because I loved that job and the benefits were amah-zing. But I only worked there a month before I quit.
Wait, what? I had a stellar job, with amazing benefits, and stability and I quit after a month? I sure as hell did. Why? Because I got offered a better job.
A job so good that my boss at the university told me I HAD to take it! And here is where the world comes full circle people. Remember how I said someone is always watching? Last year, I had a concerned father email me about his daughter who was going through the same thing many of us had experienced. After some back and forth, we realized that I had already been in contact with his daughter and we had realized that they lived within miles of my house (small world!) and I met her for coffee. I continued once in a while to converse with her father when he had a question or concern. Through a strange series of events, I ended up at a football tailgate with them and we all had a really great time. A few weeks ago he approached me with a job. Not just a job, but a really good job. I was really happy and comfortable at the university and nervous about switching careers essentially into a field I was unfamiliar with. After many talks, he told me that he had monitored my internet moves, not in a creepy way but how I interact with you all, how I use social media, and how I communicate my message to the world through this blog and Girls With Guts. He really showed me that my hobbies were in fact, marketable skills.
So I took the job and I started last week. And now I work for a giant company, with amazing benefits for anyone but particularly people with chronic illnesses, in a position that will challenge me but also reward me with new skills and relationships, for a boss who knows probably more about me that he would ever want to, but more importantly who understands everything.
So do you see my point? The very condensed version is that this blog got me a career. And to be clear it is a very professional career, at a company I wont mention because while my boss is a-ok with me talking about my butt, I don’t want the company as a whole to come up when people Google my blog/name.
So the long and short of all of this is… be a good person.
Do good work. Don’t be afraid to put yourself out there, and you might just land a dream job because you told your story. In my mission to help others with IBD and MS, I have reached a lot of people. And my point is that you never know who is watching, and the people you want in your life will commend you for sharing your story and being honest.
What I’ve learned through all of this is that I really wouldn’t want to work for someone I had to hide my past from, but I’d rather work for someone who respects me for the journey I’ve traveled. For me that is what being a true activist is all about. I understand those who write anonymous blogs, but at the same time, I think they are doing themselves a disservice and a disservice to their community. As an activist, I do my best to set an example, and I would feel like a fake if I hid who I was and what I am passionate about.
I am not so naïve that I think what happened to me can happen to everyone else. I don’t think there are concerned family members reading blogs just waiting for the chance to pounce and offer up life-changing careers. But even if it doesn’t result in a fantastic career for you, do you see how you always will reach the right person at the right time? I think that is what it all comes down to. Timing. Karma. Fate. Whatever you want to call it. I do think that if you put good in the world, then someday, somehow you will get good back.
So, thank you boss man, for taking a chance on me and helping to prove to a whole community of people that there is life beyond chronic illness.
Today is World Ostomy Day, and it has brought up some interesting emotions and realizations for me. I want to share some things with you. Intimate thoughts, and unflattering pictures.
That picture is me before my first surgery. Very sick. Very overweight from steroids. Very scared. Very VERY horrified I’d have to have an ostomy. VERY embarrassed of myself and my life. Ashamed. I wrote about what I had expected my ostomy to be like here. I wrote that I hoped I’d look back with fond memories, and in fact, I do. Having my ostomy taught me humility, but more importantly it taught me to laugh at things I couldn’t control. I remember trying to maintain a positive outlook and I just kept telling myself, ok its just 9 months. Its JUST 9 months. 9 Months. Thats it, just get through it.
But then things started to change. Slowly, I wrote this entry just 4 days after my first surgery, and even here I was writing about how I didn’t like my ostomy, but I already felt better. I remember it felt so foreign on my body. I didn’t want to touch it or hear it, or see it, and if I heard that plastic crinkle it just reminded me of the bag I was now stuck to.
It seemed like it took forever for Surgery #2 to get here. There was 6 months in between surgeries, and a lot happened in those 6 months. I tried to return to work, but just couldn’t seem to get my head in the game. I lost my job and my pending time off didn’t really help my case either. I didn’t know a soul with IBD and I desperately searched the internet for friendly words and advice and the only place I really found to be helpful was Jpouch.net. You see back then, HONESTLY, there were 2 websites about jpouches on the internet. We’ve come a long way since 2010. I found a friend, Brevin, who told me about Camp Oasis and how he’d just volunteered, and I thought well, that sounds cool, I’ll look into it. I contacted my local CCFA and had an interview to be a camp counselor which literally consisted of my crying in our directors office because, for the first time ever, I was in the presence of someone who understood how lonely it was. She was telling me about camp and how the kids who come there feel lonely and isolated and that camp was a safe place for them. And I just lost it because I was desperately searching for something like that in my life. My first year at camp was interesting. At the time I really didn’t see how magical it was or how it had changed me. I even wrote that it wasn’t as good as I thought it would be. I didn’t leave with new best friends. I didn’t really leave any different than I had arrived…or at least I thought. What I didn’t know, and I didn’t see was that camp had changed me and empowered me in ways I never even realized. And I would really need what I learned there when my second surgery came and went and was unsuccessful. That first year at camp wasn’t about the people that I met, it was about what I learned about myself and that is what I took away.
Surgery #2 was supposed to be my second step and I was supposed to get a loop ileostomy and have my jpouch created and put in place to heal for another 3 months and then I’d be done! That didn’t happen and I was devastated and depressed and yet again alone. At that time, I had you guys. I had this blog and that was really it. I didn’t really connect with my camp friends that first year, and other than my family, I was so devastated. Thats the only word I can think of to describe how defeated I felt. I thought colitis was still winning and I just didn’t know what else I could really do at that time but crawl into a hole and stay there. And I did. For a long time. But I knew that if I wanted a jpouch someday, I’d have to work for it. Literally, I had 6 months and 40 lbs to lose before my surgeon would even try again. So when I could, I got a personal trainer and started working out. I WOULD have a jpouch. I WOULD get through it. And I did. I worked my ass off literally. I worked out like it was my job and I learned how to work out with an ostomy, and I learned how to talk about having an ostomy and about my life more in person. With real people not just to the internet. I explained my life and my ostomy to my trainer at the time and while I could tell he didn’t really get it, he still encouraged me. He wouldn’t let me say “If I lose the weight”, he would say “When you lose the weight”. He honestly taught me an amazing lesson in positivity. He taught me how to picture what I wanted and that the mental game is more than half the battle. It IS the battle. He is still my trainer today, and has turned into a really good friend. A friend that puts me in headlocks on a weekly basis, isn’t afraid to tell me when I look like shit, and make me work really hard. But a friend that taught me how to believe in myself, and that if I pushed, my body could do it. I could do it. Again, I didn’t know I was learning these things at that time, but I was, and these are skills I still have now.
Surgery #3 came around in March 2011. I did it. I lost the weight I needed to lose. I drove my ass back to Cleveland and I walked into Dr. Remzi’s office and I was ready. Let’s do this. I was never more prepared for a surgery in my life. I was mentally strong, and physically stronger than I had been in over 2 years.
The surgery came and went and was flawless. I left Cleveland in a timely fashion and felt like a damned rockstar. Until a day later when my stoma separated. And I have never been more horrified in my life. I had also been fighting that nasty ulcer, and that combined with the separation made me absolutely terrified. Again…I felt defeated. Would ANYTHING work properly? Would I ALWAYS have problems? So back to cleveland I went. Defeated. Frustrated. Angry. Depressed. But this is why I learned that sometimes, you don’t have a choice. You have to keep going, and trying because there is not another option. And as much as it sucks, you pack up everything you JUST unpacked, you call your mom crying, and you ask her to come over help. You learn to ask for help. You let you mom make phone calls for you, and then you have your Dad come pick you both up and drive you 4 hours right back to Cleveland. I think I cried the whole way there because I just couldn’t think of anything else to do. But right there, in that time, I learned how amazing my family was. I mean I knew it before then, but it was moments like this that I knew I’d never be able to do it all without them. I also learned that no matter how old I was, there would still be times that I wanted and needed my parents to come to my rescue and that it was ok to ask for their help and to depend on them because sometimes they wanted to be needed too.
So after that got taken care of, I went home mentally exhausted, but at the same time I knew that if I just made it until June, I’d have my takedown. I just had to make it 3 more months. And then I had an MS attack that took my vision and all of my optimism. I was told I’d have to push back my surgery…again. And this my friends, is when I lost it. Right there, that was my rock bottom. Physically and mentally overloaded and after years of just pushing through, I caved. Everyone has breaking point and that was mine. I retracted into myself, I stopped answering the phone, going places, eating. Everything. I learned why people choose to die over choosing to keep going. I learned that I had that choice too and it took me a while to choose to keep going. I had tons of support from everyone here, but at that time in my life, I had to choose to live on my own.
And I did.
During all of this I also found a new surgeon because I was having problems with my surgical team at Cleveland. And then…it was June. My takedown was scheduled for June 6th and when June 1st hit I had this mini identity crisis. I was so excited to take the next step in my IBD journey and try out my jpouch that I had worked SO hard to get. But at the same time it was like diving head first into the unknown. It was like my first surgery all over again, I was scared, and nervous, and doubtful that it would even work. I took tons of pictures of me with my ostomy because I wanted to remember myself in that place. Happy. Healthy. Confident. Proud. I wanted to remind myself that if I could feel this way with my ostomy, that I could take on the world with my jpouch.
I never posted some of these pictures, because its one thing to be confident, its another to post half naked pictures of yourself on the internet. But you know what internet, I look back at these and I see progress. I see a body that I worked hard to get, even though it wasn’t perfect. I see scars that are healing nicely. I see that I was starting to build myself back up.
Surgery # 4 was different.
I was so prepared for it. I was so ready and I thought it would be easy peasy but it wasn’t. It was a difficult recovery. But when I woke up in my bed the first thing I did was reach down to feel for my bag. And it wasn’t there. I didn’t feel relief. I wasn’t super happy. I actually mourned the loss of my ostomy a little. For the next few weeks I kept reaching down to touch my bag, or adjust the stool. I had created all these habits from having the ostomy, and I never even realized it. It was almost like a nervous tick, I just did things without even thinking about it, and now…I didn’t have to. It was weird. The other day I was actually thinking about how fast we create habits…and then how quickly we forget those habits. I probably stopped checking my “ostomy” just a few weeks after surgery. At the time, I felt like I’d always be checking for it. So quickly we forget.
I don’t want to ever forget. I remember my ostomy like I remember an old friend. I learned a lot from it even though it caused me stress and frustration. I am thankful I had it, because it saved my life. Having my ostomy introduced me to so many new people, and put me in many new situations that I would have never been in. IBD changed me, but I think having an ostomy molded me. It helped turn me into this person who I think is pretty great. Like I said, my ostomy taught me humility, but it also taught me how to be proud of myself and my accomplishments. I learned about my own personal drive in life, and my passions. My ostomy took me to new places, and I’m not just talking about an OR table, or comedic situations that would make that scene from Bridesmaids look like a disney movie. I’m talking about the places I’ve gone, the people I’ve met, and the places that I went in my own evolution.
Today is World Ostomy Day, and on this day every year, I’ll remember how I got to where I am. I actually kind of wish I had an Ask Me About My Ostomy shirt because I am more than happy to tell anyone about my front butt that saved my life.
Wouldn’t it be great if when someone said, “I’m going for a scope tomorrow”, it meant they were getting a sweet telescope. That they were going to spend their day anticipating the next starry night, instead of drinking clear liquids and shoving enemas up their butthole?
I’ve been due for a scope since June 6th, which was my year post take-down assiversary. I however, promptly celebrated by eating cake and did not have a scope. July…no scope. August…no scope. September…no scope. You see where I’m going with this.
“The time has come”, the walrus said. I’m pretty sure walruses don’t have to get scopes, so he wasn’t talking about a camera up his big ol’ walrus butt.
I’m being a cry baby. I know I should go get my check up, and that I should waltz on in there and be all “Ok here’s my ass, shove a camera up there”.
BUT I DON’T WANNA.
I have successfully gone almost a year without getting ANYTHING shoved up my ass. That’s like a freaking Guinness book world record for IBD patients. A whole year without any fingers, tubes, camera, pills, NOTHING.
And now..my “winning” streak is ending. In our world…a year with no butt intrusion is winning. Take that Charlie Sheen.
So tomorrow, I shall do my stupid scope. Awake.
I KNOW. I vowed to NEVER ever do that again, but this is a pouchoscopy, which means its short and sweet…or so they tell me. And as much as I’d love to get knocked out an anesthetized tomorrow…in lieu of taking the whole day off, and making someone else take a whole day off to cart my doped up ass around, I’m putting on my big girl pants (well actually I’ll be taking them off), and going to go do this stupid thing awake.
Also…its not until 2:45pm. Also…I have to work the morning before.
So I will not be taking the recommended 2 enemas before hand. Why? Because I have a jpouch damn it. It’s practically a build in enema…nothing stays in there more than a few hours anyway. AND…because I’m a rule breaker. I do what I want.
Tonight I had my “go to” clean out meal…a double cheese burger meal, and I’m sure in a few hours I’ll be all kinds of cleaned out.
Secretly though I’m kind of hoping that while I’m sitting there on the table, staring horrified at my own ass as the camera gets closer and closer, that when the scope is all up there doing its thing, perhaps we’ll find the Hamburgler stuck up my ass.
I have been asked many times why I am an advocate or why I spend my free time and money on raising awareness for IBD. I have a long winded, drawn out answer for this question and depending on my audience it can be really inspiring and technical, or loaded with swear words and jokes. I like to think that I understand my audiences. I have this same strategy when people ask me what a Jpouch is. I have loaded responses ready to be verbally vomited into the ear canal of the unsuspecting question asker. Depending who asks, they will either get my medical jargon-ed response, or something about how my colon is gone, yadda yadda, new internal plumbing, yadda yadda, wham bam poop chute answer. I’m really quite eloquent with words.
I heard that from a homeless guy in downtown Detroit once. I thought it was clever. Clever enough for a buck.
I was asked recently if I take donations for my site. I didn’t…but not because I’m against money but because I never thought about it. So I set up a donations button through Pay Pal and slapped it on the right side column of my blog. Now lets be clear, I am not ASKING for donations. In fact, I think that sites like mine that ASK for them is kinda weird and I’m all “what the hell are they spending money on anyway”.
It does cost money to run this site, not a lot, but since I’m living on grilled cheese as it is, it is enough to be significant in my life. So what I’m saying is, if anyone out there feels so inclined and wants to pay my mortgage, who am I to stop them? I mean really, that would be rude.
Also in case you’re wondering my mortgage is about $400/mo. So cheap, right? Wouldn’t break the bank for you at all. KIDDING.
No seriously, the idea of accepting money from strangers to pay for hosting and what not on my site is a weird thing for me and makes me mildly feel uncomfortable. But I wouldn’t have made it possible if someone didn’t ask me to do it.
Stop being all judgy. And start being more spendy. Kidding. Again.