Your job doesn’t need to be your passion

I recently read an article on Huffington Post entitled “Why ‘Follow Your Passion’ is Bad Career Advice.” I was immediately drawn in by the title. I’m so sick of the millennial generation feeling the need for their work to be their passion. I really think this stems from parents and teachers telling millennials “you can be anything you want to be.” Sorry, but that’s just not true. Even if I wanted to be, I’m not going to be a doctor or Olympian. I’ll be honest, my worst grades were in my science classes (with the exception of Geology: rocks for jocks!). We know I trained with Olympic swimmers, but even at my peak I was never going to be Olympic caliber, no matter how much I loved the sport. Life doesn’t work like that.

The article quotes Monique Valcour, a professor of management at EDHEC Business School in France. Her main point is we should find “sustainable careers.” Something that makes use of the skills we have, urges us to develop new skills, and among other things, provides a work-life balance. This is not what we were told growing up, hell that’s not what we’re told now. We’re told to love what you do, make your passion your life’s work. But, I truly believe, a job can just be a job. My father always says “No one wakes up and says ‘I’m going to fun today.’ No they say I’m going to work!”

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Currently my job is my escape from lupus. It’s 8+ hours a day where I’m distracted from the fact that I have this horrible illness. It’s 8 hours a day where my co-workers know me as Kristin, the account executive. Is my job my passion? No. I had that job and because of lupus I couldn’t keep up. But, that doesn’t mean I’m not happy now. I’m good at what I do; I’m valued by my company; I’m able to take a lunch break and be home in time for dinner; I’ve found a balance in my life; I’m able to take care of myself physically while still bringing home a paycheck.

If you can find a job where you can manage lupus while following your passion – great! But, with so many patients not able to work, finding a job that doesn’t worsen your symptoms, offers health insurance, and pays the bills is enough. Make yourself and your health your passion. You’ll be much happier I promise.

 

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There is no “Miracle”

Thought I’d share Chronic Rant’s most recent post about a novel she just read.

In books and movies, tv shows and plays, it so often happens that a miracle cure comes along just in time. Some researcher has a great idea, loved ones waive all liability, the cure is administered, and everyone lives happily ever after…..If only right?

Thanks Chronic Rants for saying out loud what all of us wish we could say to anyone who asks “aren’t you better yet?” Head on over and read the full post. It’s great.

Nightmare on Elm Street

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“Every night I go to bed knowing that Freddy Krueger will be waiting to beat the shit out of me with a baseball bat, and that I’ll wake up with whatever horrific injuries he’s inflicted.”

Have you read Jenny Lawson’s book Let’s Pretend This Never Happened (A Mostly True Memoir)? It had me laughing out loud all 384 pages, which meant that I had a lot of grown men looking at me bewildered when I read in public. Lawson has a chapter on RA and described the aches and pains perfectly! She also asks why treatment doesn’t include a personal assistant.

“The doctor was right about there being a lot of treatment options, but I was disappointed to find that none of them included medically prescribed Segways, or personal monkey butlers to help you open pickle jars.”

Couldn’t have said it better myself.

My Food Allergies Explained – FINALLY

Two months ago I completed food sensitivity testing. My Rheumatologist and Nutritionist ordered what’s called Mediator Release Test. They can take insurance but my insurance didn’t cover the cost of the test. It cost me $275 out of pocket, which I was more than happy to pay to get some answers to my nagging GI issues.

I went to the lab and had four vials of blood drawn. I then overnighted these vials to the lab in Florida. My nutritionist called a week later to schedule my follow-up appointment to review my results. All in all the process was pretty simple.

The results however, were not. Turns out I’m allergic to a lot. At the top of the list, wheat. No surprise there. While my celiac tests had come back negative, I suspected I was highly sensitive to wheat, which the MRT confirmed. I’m also allergic to American cheese, rye, mushrooms, and honey. Seriously I’m allergic to HONEY! I love honey, so I’m slightly pissed about this.

On the highly sensitive to list: buckwheat (there I go with the wheat again), cauliflower, codfish, cottage cheese, cow’s milk, green peas, mustard, papaya and pineapple (good thing I don’t live in Hawaii), peanuts, pinto beans, pistachios, Red #40, Yellow #6, and acetaminophen (yes I’m allergic to Tylenol).

I must note, my allergies are not the “eat it and my throat swells to the point of death” type. Rather when I consume the aforementioned ingredients I feel sick to my stomach and generally sluggish. Most of these can increase my autoimmune responses and could increase lupus flares.

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My reaction to all of this: I’m super pissed about the honey and pineapple; I don’t like mushrooms, mustard, or cottage cheese anyways; giving up cow’s milk means no ice cream which is sad; sensitive to food coloring and acetaminophen is a pain in the ass. Have you found a cold medicine without all three of these? The only ones I found were then naturally flavored with honey = fail! All but two multivitamins at my local pharmacy had food coloring in them. Those that didn’t were super expensive.

I have to be a lot more conscious about reading labels. I grabbed a carton of rainbow sherbet the other day at the grocery store and come to find out it has pineapple and food coloring in it. But, like an idiot I discovered this AFTER I had eaten a few spoonfuls from the carton. No immediate reaction but I have to be more careful.

I’m happy I discovered what I’m allergic to. In a disease like lupus which has no rhyme or reason, it’s nice to have control over something. Totally worth $275.

Help solve the Cruel Mystery

I know I’ve said raising awareness is the purpose of this blog, why I walk, why I share my story. But let’s be honest to further lupus research and lupus treatments we need money.

There are plenty of ways to donate:

My walk page is still open until the end of May

Make a general donation to the Lupus Foundation of America

Funds donated to the Lupus Foundation of America go to medical research, patient support programs, community education, and advocacy for public policies. The LFA has been instrumental in providing support services for me. I don’t know how I managed this disease for so long without the help of my local chapter.

Make a donation to the Alliance for Lupus Research

100% of the donations to the ALR fund lupus research. Since 1999 the ALR has given $81 million to 159 research programs. One of their funded programs (the study of B-cells) helped pave the way for Benlysta, the first lupus drug in a century.

Purchase one of these awesome shirts and $8 of every sale goes to the ALR.

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No donation is too small. Even the change between the couch cushions helps. Thank you to those of you who have donated, and thank you in advance to those who intend to donate.

Seeing an invisible illness

I’ve heard “you don’t look sick” so many times; overused the phrase “invisible illness;” my personal motto for dealing with lupus day in and day out is “fake it till you make it.” But, it’s getting harder to fake it, harder to hide the fact that I have lupus.

I consider myself lucky to not have a bad case of the lupus butterfly rash, or skin lesions like many lupus patients suffer from. My hair is not falling like many of the lupus patients who are on chemotherapy as an immunosuppressive treatment. I’m not on mass amounts of steroids causing weight gain and bloating.

But, I see lupus every day. I see how tired my eyes look, how dry my skin is, how yellow it can look from my liver involvement, how messy my hair is, how bland and sick I am. Even though I’ve had this disease for ten years, it’s getting harder and harder to look at myself in the mirror every day. Every day before leaving the house I fight back tears, sometimes more successfully than others.

This weekend was packed full of social activities with family and friends. May I remind you that I live in the south where young women really do put hours into their appearance and really look like the women you re-blog on Tumblr and pin on Pinterest. Their hair is always curled just perfect, their skin is flawless, their outfit always put together, heels to the sky.

Don’t try to tell me it’s just the magazines. In Atlanta/Athens it’s real life. Women are perfectly put together every day. I like looking my best, doesn’t everyone? But, I can’t keep up.

I’ve tried to keep up. This weekend I gave myself four hours to get ready for a party. Four hours to shower, dry and curl my hair, and put on my makeup. Why four hours? Because I have these spoons you see, there’s only so much energy I can expend. I can only hold my arms above my head so long; my neck can only hold the weight of curlers so long; no amount of moisturizer can fix my skin instantly; no product can really take away my tired eyes.

I wish this stress of looking nice only occurred when I had a social function to attend, but it’s every day. Women come to work looking like this. I come to work in jeans, slipping into my Ugg moccasins under my desk to keep the Raynauds at bay. I dry and straighten my frizzy hair once a week as I don’t have the energy to do it every morning and extra sleep is precious. When I have a client meeting I try a little harder, like I do when I have a social event.

Honestly, trying makes it worse, more stressful. I’ve tried so hard and still failed, half-assed it because I got too tired to finish the job. I stare at myself and ask “why do I try?” because trying doesn’t make it better. My hair is still a mess, my eyes still tired (and now red from crying), my skin still dry and yellow. Looking at myself is too hard.

I’ve become more self conscious lately, which is strange considering I was on television and it was part of my job to look the part every day. Sean can tell me “you look pretty” before we leave the house but it doesn’t help. Nothing seems to help right now. Do I keep trying, only to mentally break down? Or do I avoid trying (and mirrors)? I wish I had the money to pay someone to do my hair and makeup for me everyday (I know every girl dreams that) but that’s not realistic. I’m just not sure how to fake feeling good when I don’t look good.

My first lupus walk

This weekend was the Walk to End Lupus Now in Atlanta. Despite having lupus for more than a decade, this was my first lupus walk.

I arrived at Piedmont Park not knowing what to expect. The Atlanta walk is different than most other fundraising walks. For starters, the walk doesn’t start until 5pm allowing for a full afternoon of picnics, entertainment, and general celebration of the cause. Atlanta is the largest lupus walk in the country with more than 8,000 people in attendance.

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While I was a top fundraiser for many weeks, I fell from the top ten. (My competitive nature didn’t like that). But, I’m happy to report I raised $2,731 for the Lupus Foundation of America.

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I wouldn’t say I was aggressive in my fundraising efforts. Besides the Lupus Awareness game at Oregon, I posted messages to Facebook and Twitter, and sent emails to friends. I was blown away by the support of friends; friends who I haven’t spoken to since high school; Sean’s friends whom I’ve never met; parents of my brother’s friends.  I loved it when an email hit my inbox that said “Congratulations you’ve received a donation” generated automatically from my walk page.

The best part of the whole day was having my friends show up to walk with me. I didn’t even have to ask, they wanted to be there. They brought friends and along the walk route wanted to know more about my disease and how it affects me. That means more to me than any amount of money.

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A huge thank you to everyone who donated. I appreciate it more than words can express.

Oregon Baseball and the fight against Lupus

My family at Oregon's PK Park

My family at Oregon’s PK Park

Tonight at 7pm the Oregon Ducks will take on UCLA in not only a huge PAC12 series but the first ever Lupus Awareness Night hosted by the University of Oregon baseball team.  My brother Jeff or “Bucky” as I’ve always called him “pitched” the idea to the baseball operations manager who got the ball rolling. Tonight my baby brother will throw out an honorary first pitch (he’s not scheduled to start) and deliver a short pre-game speech with my dad. There will be raffles, donation buckets, and a lupus information table manned by the lovely ladies of the Pacific Northwest Chapter of the Lupus Foundation.

Wednesday evening The Oregonian published a story on Bucky and me. Read it here! I had a 15 minute phone call with the reporter who then spoke with Bucky later that afternoon. Now yes if you read the article you will definitely get that my brother marches to his own “beat.” But, what surprised me is the fact that he knows how sick I can be.

That's him on the right...just a little wacky

That’s him on the right…just a little wacky

When I was first diagnosed Bucky was only 12. Then I promptly left for college and didn’t return until three summers later. I was very ill that summer, unable to get out of bed most days with rounds of tests at the hospital. But, he was still a kid, running around town with his friends without a care in the world. After graduate school I moved home, Bucky’s senior year of high school. That year he did a project on lupus for his health class. He and his two friends interviewed me. It wasn’t until I explained my daily pains, lack of energy, and organ complications that he started to understand.

I don’t want to say my brother is selfish because he’s not. But, he comes across as very carefree. I took that carefree attitude as a lack of empathy. This article proved me wrong. Bucky may brush me off when I ask about the speech “I got it, yah whatever” but my dad told me he’s been practicing what he’s going to say. He’s acknowledging my fight to his teammates and the local reporters. He even got every guy on the Oregon baseball team to donate a few bucks to the Lupus Walk. The Oregonian article was posted to his Facebook page by his non-baseball friends and received hundreds of likes.

I wish so badly I could be in Eugene tonight to join my family. It’s been a year since I’ve seen Bucky and this week makes me miss him terribly. I couldn’t be happier than he’s helping bring awareness to lupus and encouraging others to do the same. I love you Buck.IMG_0033

If you’re in the Eugene area please head out to PK Park tonight (Friday April 19th) as the Ducks host UCLA. Get there early for the acknowledgement of Lupus Awareness Night.

 

Ways to be happier at work

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Inc. had a wonderful post, entitled 17 Ways to Be Happier at Work. While this list was written for the normal workers, I think many can be applied and more deeply discussed by those of us working with chronic illnesses. Here are just a few of Inc’s tips that spoke to me:

1. Don’t compare yourself to others. Everybody, and I mean everybody, starts out in a different place and is headed on their own journey. You have NO idea where someone else’s journey might lead them, so drawing comparisons is a complete waste of time.

Those of us with a chronic illness are different from the normal worker. We take more sick days, we may move slower, forget more, etc. Do not compare yourself to your colleague who works 12 hour days, or the colleague who travels 3 days a week. As long as you are getting your work done on time and/or on budget you don’t need to compare yourself. I can’t travel like the rest of my colleagues who can jet off to Detroit or Austin on an hour’s notice. But, I can make sure all the back end work at the office is complete and organized. As long as you are doing your job to the best of your abilities do not compare your work style to others.

2. Never obsess over things you cannot control. While it’s often important to know about other things–like the economy, the markets that you sell to, the actions that others might take, your focus should remain on what you actually control, which is 1) your own thoughts and 2) your own actions.

This one is huge for me. I can’t control what a client throws my way, or if an event I’ve planned goes awry in the field. But, I can control how I react when things go wrong. Lupus is aggravated by stress, so it is important not to stress about things I can’t control.

3. Know and keep your personal limits and boundaries. While your job might sometimes seem like the most important thing in your world, you’re killing a part of yourself if you let work situations push you into places that violate your privacy and your integrity.

While Inc. describes this tip in regards to workplace ethics, I think about it in regards to time. I’ve made a New Year’s resolution to keep work at work. If a situation is immediate, most colleagues will call; which means not checking my work email while away from work. I know this is hard in the world of Blackberries/ iPhones, where the lines between work and personal life have become blurred. But, in order to control my stress levels as discussed above, I must keep work and personal separate. Bonus: this means I can give my full attention to my loved ones or my health when I’m not at work.

4. Don’t over commit yourself or your team. It’s great to be enthusiastic and willing to go the “extra mile,” but making promises that you (or your team) can’t reasonably keep is simply a way to create failure and disappointment.

Again, back to managing the stress levels. You want to seem like to go-getter, the over-achiever. I know because I am that person, despite my limitations. But, when you only have so many spoons in a day it is best to avoid over-committing.

9. Make peace with your past lest it create your future. Focusing on past mistakes or wrongs inflicted on you is exactly like driving a car while looking in the rear view mirror. You’ll keep heading in the same direction until you collide with something solid.

I think of this tip in big picture terms. For years I had a dream of becoming a sideline reporter for ESPN. I worked toward that dream covering two BCS National Championships, MLB playoffs, the Little League World Series. But I couldn’t keep up. Lupus wouldn’t let me continue to run ragged, work a month without a day off, or carry a 40 lb. camera while running up and down a football field. Yes, I never made it to ESPN, but I lived my dream. I did the same job, if not more, than the other sideline reporters, and I got to cover some really cool sporting events. I can’t look back on my career change and be bitter that I didn’t make it to the top. I have to make peace with the fact that my new career allows for a lunch break, a chance to sit down, and the ability to turn work off. In the end that’s better for my health and psyche than completely fulfilling my dream.

It is enough

EffectivenessInTheRightJungleFrom 7 Habits of Highly Effective People via Jess Lively

How fitting is this quote for us lupus patients? How often do we feel guilty for not being physically able to do enough? I feel guilty if I don’t cook dinner after a long workday, or if I let the laundry pile up an extra few days, or if I spend a Saturday napping instead of enjoying the sunshine. That guilt of not doing enough, the guilt of feeling lazy even if I am extremely fatigued.

But, this quote is a gentle reminder that we as lupus patients don’t have to do it all. If going to work is enough of an effort, then it’s enough. There are only so many spoons and hours in a day. As long as we put the energy into the absolute most important thing that day then the rest doesn’t matter. It’s enough.