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A lame update post

Hey guys. What’s up? Not much here.

That’s a lie.

I am one busy mofo. Hopefully you can tell that by the fact that I have not updated in over a month. …….bad blogger.

So heres the updates!

I am working hard at my new job, which I love. I feel fortunate to have it everyday and even more fortunate that my whole medical history is not an issue.

I am working my ass of for Girls With Guts right now. We are in full steam for planning our 2013 Fall Retreat. Holy crap you guys, I am so nervous but at the same time SO SO SO excited. If you’re a lady with IBD/ostomy/jpouch, I really urge you to check it out. I think we have an amazing weekend planned and frankly, it would mean a whole hell of a lot to me if some of you came. So many of you have been so important in my IBD path, and it would be nice to be able to thank you in person. If you are having a problem affording it, we’ve got scholarships! Deadline is the end of July so act fast! Also I swear that wasn’t a commercial, but its just a HUGE part of my life and I really want people to come because I think it would be really helpful and be a great resource.

I am speaking at conferences! I’ve been invited to speak at two conferences this year (I’ve declined one) but I was also asked to come speak and mentor at the Michigan Girls Scouts of America leadership camp. In the giddy 12 year old me, I am really really excited about this. I was a Girl Scout as a kid, and I remember having mostly fond memories (until I got kicked out, but that’s another story), and I remember it being a really positive part of my life. There is something inherently exciting about speaking to a group of young girls who are motivated and excited.

I DONT WANNNNNA. WHHHHAAAAA
I DONT WANNNNNA. WHHHHAAAAA

I’m back to my neurologist to start a new drug for my Multiple Sclerosis. This is sort of a touchy subject for me because I feel happy and healthy and I don’t want to be on any medication. None. I take NOTHING now and its so fantastic. But by not taking anything for MS, it’s not necessarily helping me, more or less just letting me throw my oblivious ignorant fit about being med free. So now I’m stuck between this adult rock and hard place where I want to just enjoy being healthy for the first time and a long time, and throwing a tantrum about taking meds because I DONT WANNNNNNAAAA. Getting back into medical mode is a little difficult. Doing testing again is obnoxious. But alas I am an adult and not an unruly 4 yr old. My new med won’t be a flavorful Flintstone vitamin but hell, there are medical breakthroughs everyday. You never know. Remicade could become a maple syrup you slap on pancakes once a month. Humira could just be the active ingredient in a new energy shot. A girl can dream.

Here I am looking particularly miserable as I get electrocuted.
Here I am looking particularly miserable as I get electrocuted.

I ran the Tough Mudder. It was 12 miles and 20-some military obstacles. While I’d like to be all, “CRUSHED IT”, the reality is that I did it, I finished, but I’m sure it was not pretty. It was 12 long miles of mud, mud, electrocution, mud, walls, the coldest water I’ve ever been in, mud, mud, and the norovirus. Apparently in the Michigan course we also had the added benefit of a gastrointestinal bug. Lucky day! But get this. I think I’ve put enough Good Gut Karma into the world that I didn’t get it. Dude, I know. Days after the race normal, healthy, coloned people were dropping line flies due to IBD like symptoms. I, however was not fazed. I wonder if I gave all of Tough Mudder IBD. Suckaz. The summary is that I didn’t train enough (per usual) and it was hard but not impossible. Honestly, my body and its abilities keeps amazing me. It may not be the hottest bod, or the strongest, but its been through a lot and now I have a fancy orange Tough Mudder head band.

But that’s pretty much it. I hope guys are well. I have some more stuff in the cue for postings soon so check back and I swear to not disappear again.

 

 

Job Hunting and Jpouching – Pt 1

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!

The Plan To Not Plan

100111 - planning to over planning

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.

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