I posted yesterday about my experience with dating with a chronic illness and in that post I said that I’d ask my new man to post about what it was like to decide to date someone who is a diseased mess. Within an hour he had sent me his post. Prepare to vomit, because its adorable.

These are the facts:

1. Jackie has no colon, like it’s not there… at all. A big space inside of her abdominal cavity that she refuses to allow me to fill with an Easy Bake Oven for Mexican Pizzas or a diet Mountain Dew.
2. Jackie has Multiple Sclerosis.
3. Jackie loves summer camp.
4. The reason firehouses have spiral staircases is because the horses that used to pull fire engines learned how to climb straight stairs.
5. I love Jackie.

There are people who would have you believe that being in a relationship with someone who has a chronic, incurable, or life altering disease is fundamentally different than when two healthy people decide to be together. These same voices would cite the hospital visits, insurance calls at three in the morning debating coverage and prescription benefits, medical alert bracelets, dietary restrictions, life expectancy, and the possibility of one partner being incapable of taking care of the activities of daily living.

I know these fears because they all fought to be heard in my own heart when I met her for the first time.

But I love her.

Jackie is not her disease. Jackie is not Multiple Sclerosis or Ulcerative Colitis. Jackie is the most beautiful 28-year-old woman I’ve ever met; she is more than what she faces everyday. She, along with the names of the brave individuals who visit this site, advocate for health awareness, give the 35 cents in their pockets to fight breast cancer and heart disease and spina bifida, and let the world know it’s okay to be sick. That there is no shame in saying how much it hurts to feel so different, that you can cry on your bad days and that doesn’t make you weak. Jackie gives IBD the finger, but she can also tell me, “I’m scared”, and that’s what makes the difference.

It doesn’t take a saint to be with Jackie, I’m not perfect (but soooo close); I can’t run away from her and it’s not just because I’m worried about the future. I would be running from myself, from the chance to become the better person she lets me be when she holds my hand and asks me how I feel.

This relationship won’t be easy, I never expected it to be. But she is so perfectly imperfect, I don’t want anyone else.

So, in short, how does one say how they feel about being with a “sick” person? Like this:

I love you, Jackie

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 posted on the BPT facebook page earlier last week that I had pouchitis and that I was taking Flagyl for it.

Well…I got cocky.

I felt better within a few days and like a total dumb ass stopped taking the Flagyl after only about 5 days, only half of the recommended course. In the past this has worked for me, however I was not so lucky this time. It came back, and it came back angry. I noticed it again last Thursday but it really took a toll on Friday. I decided to start taking the Flagyl again but by that time the damage was already done. I laid on the couch most of Friday, Saturday and Sunday hoping to get less tired and feel better but it didn’t really help. So add in some person life drama, and drinking way too much coffee over the last few weeks and bam. Tuesday I checked myself into the ER for pouchitis and severe dehydration.

If you’re like me, you debate the ER for about 3 days before actually going. I called at least 4 friends to get their opinions. I even had my spiel for the doctors and nurses ready to go. It went something like, ” Hi, I have pouchitis and I’m dehydrated, just get me some saline and a CBC and I’ll be out of your way”.  But we all know what never really works. By the time I decided to actually go, I needed to go. I got there and after I got taken back, and put in the hallway (which is so fun as a patient , I literally could not keep my head up I was so drained. I had to take a huge breath before speaking because I was out of breath, and light headed. If I had waited much longer, I probably would have needed a ride, and I hate having other people drive me to the ER. I hate inconveniencing anyone else with my stupid body.

So I get there and after about an hour and a half, I finally got my IV and my fluids. Shockingly it only took one poke, but of course it wasn’t after the nurse telling me over and over how small and deep my veins were, which generally just gets me primed to ask for another nurse, but she got it, and only after like digging around for a few short seconds. To her credit, I’m not even bruised. Well done over chatty nurse, well done. So here is the best/worst part of the ER. They only half hear what you’re saying. They asked if I had pain or nausea, and I really didn’t so I said no, or it was minimal. So when the nurse came back with my goodies she brought, saline, IV Flagyl, IV Benadryl, IV Zofran, and IV Dilaudid. I was like, well, I’m never one to turn down the fun meds so shoot up, but srsly….doctors of the world, does anyone listen? I was actually pretty stoked for the Benadryl because it would help me sleep, Zofran and Diladud are like a weird fucked up bonus.

This ER story is much like many others. They gave me drugs I didn’t need, the Resident treated me like I was an idiot, and the nurses were amazing. The end. I decided to stay in observation for a few extra hours just to get the extra fluids because I thought I’d go to work the next day. But I didn’t. I woke up feeling better, but still just so damn tired. So I stayed home and wished I had stayed in observation for 24 hours so I could have gotten the fluids.

I’ve decided to turn my life into a drinking game to keep myself hydrated. Wake up – Drink. Take a shower – drink. Pet your dog – drink. Check facebook – drink. Its really a totally blast. Actually, its not, I hate trying to stay on top of my hydration. I suck at it, because I drink enough water for normal people, but not enough for the colonless. So I’m posted up at work today with some pedialyte and a water bottle.

So what are the lessons we’ve learned from my mistakes?

Take your damn Flagyl for the whole course.

 Also above all this reminded me that no matter how far I run, or how many programs Girls With Guts has, or how many degrees I get, or the fancy job that I have…I am still chronically ill. Not that I pretended not to be, or that I thought this was all past me, but I was doing so well for a really long time. And I got careless. The worst part about all of it, is realizing that this is my fault and it all could have been prevented. I realized a long time ago that I am not fragile, but it took this to remind me that I am not indestructible.

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.

Got it?

Ok.

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.

The latest addition to my desk

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.