So I started roller derby. I know, right?! After much talking and about a million questions to my good friend Christy over at Ostomy on the Track, I finally decided (after almost 10 years of wishing) that it was time to start training and work towards getting placed on a team.
Hey Friends. I have been pretty MIA lately due to a busy life, a growing non-profit and an active social life. All of which wouldn’t be possible with my awesome jpouch. I put it to the ultimate test a few weeks ago though when I went on a 3 day, 4 night hiking trip at Big Bend National Park in Texas.
I’ve been going to therapy lately, and my therapist gave me a task for the next month. Be uncomfortable.
I’m uncomfortable with the idea of being uncomfortable. When she said it, my skin started to crawl, and I was all “yea, I don’t think that’s gonna be a thing”.
A few months ago I wrote about how it felt like it was raining cats and bowel problems. It felt like everyone I knew was having some issues with their IBD/jpouch/Ostomy. Like for whatever reason, the IBD gods were smiting us all. It sucked.
Well now its raining cats and depression. I have countless friends that are going through deep and severe bouts of depression right now. Myself included. I’ve found that when I get depressed, like this, there are very few things that I want to do. Most of them involve self medicating and sleeping. Wallowing on my couch has been a favorite activity for the last month. And then talking to my other friends about why they are depressed and if/how we can help each other.
What I’ve learned about having depressed friends is that it is a blessing and a curse. Its just like having other chronically ill friends. Sometimes you can relate to each other so well, that its incredibly comforting know that at least someone out there kind of understands why you haven’t showered in 5 days and are ok living on a box of cheeze its for an extended period of time.
But other times, you tend to bring each other down and its a slippery slope. My friends and I try to check in on each other daily and if I’m having a good day and they are having a bad day, I’ve noticed my feelings can change. And the same vice versa. Sometimes I have to tell certain friends that I can’t be their support network right now because I am not strong enough in my own life. Being depressed almost always revolves around some level of being selfish. Maybe you’re ignoring your friends calls. Maybe you cancel plans. Maybe you’re not a listening ear when someone else needs it. I think all of that is fine as long as you just give people a heads up on why you’re doing it. I have told people lately, that I’m have a really difficult time in my life right now, so I find myself retracting and isolating, so please don’t take it personally. And that’s all I have to say.
Some days are ok. Some days I wake up already hyper focusing on negative issues and things that I can’t change. Those days I take a lot of Xanax and when I get home I have a glass of wine. Is this the “right” way to deal with it? Nope. But right now sometimes I have to just shut my brain off, and that is how I choose to do it. Depression is a weird thing that is unique for everyone. All that I really know is that its very difficult to crawl out from it and that a lot of people I care about are down in this hole with me. But I am doing what I can to crawl out, step by step, day by day. I take my anti depressants. I take my Xanax. I go to therapy. I talk to my friends and I try to set small daily goals so I can feel like I accomplished something. Sometimes that goal is just getting the mail but at least I did it.
Just know that many of us who are chronically ill deal with depression in varying degrees. Mild to severe. Frequent to periodically. I know that it does get better, even though it feels awful right now. It does. It will. In time.
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’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.
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.
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.
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.
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.