It’s been awhile

Apologies for being MIA. It’s been a whirlwind of a year:

1) We got married!

Kristin and Sean

Ten days after I wrote my last post, Sean and I went skydiving. I arrived (safely) on the ground to a huge “Will you marry me?” sign and Sean on one knee. In June we held a small, casual wedding in downtown Atlanta. My wedding planner Anna transformed a sports bar into our ceremony venue. The weather was perfect for an evening dancing and drinking on a rooftop. We’ve been settling into married life ever since.

2) I switched jobs/careers.

When I left the world of television I was originally hired as a writer/communication expert at a marketing firm. As business grew they needed more account executives and changed my role. It was a role I did not enjoy for a company becoming more and more hostile. The company wanted me to go to a meeting in Chicago the day before the wedding and then I travelled with the client for the two weeks immediately following our June nuptials.

Somehow I found time to interview with a large communication agency and got the job. I’ve been in my new role since August and am so happy. My work-life balance has been restored and I enjoy the company of my coworkers. They’ve been supportive of my fight against lupus and have encouraged me to work from home when needed. It’s amazing how simple and powerful empathy can be.

3) I paid off my medical bills.

Besides getting married, November 14th was the happiest day of my life! Finally after eight years of debt from the worst of my lupus flares is gone. I owe nothing to a hospital! The weight off my shoulders is indescribable.

4) We’re looking for a house.

Now that my career is settled and the bills are gone, we’re looking for a house halfway between my job and Sean’s. Currently we live in Sean’s bachelor condo, an hour commute from my office. It’s time to be a grownup and own a house. Stay tuned for more updates on this front.

I’ve vowed to get back on the blogging train and make this blog a resource for those working while battling lupus. But, I also vow to make this blog a little more of me as my lupus does not define who I am. Thanks for sticking with me!


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!”


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.


Puppy Love

Seriously, how cute is my dog? (Rhetorical question – of course she’s frickin adorable).


She was not my dog to begin with but she has become my dog since I’ve been with Sean. We have our little bonding time when I get home from work first and take her on a walk around the neighborhood, just the two of us.

The first time I was sick at Sean’s apartment, Lu didn’t leave my side. She stayed in bed with me until I went to the hospital and then immediately cuddled up with me when I got back.

d7cc0168618a11e19896123138142014_7When I was in the hospital for a week earlier this year, she flew threw the air as I got home, wanting to sit on my lap, lick my hand, and cuddle. She instinctively knows when I don’t feel well, knowing when it’s ok to get get close and when to lay just at the foot of the bed.

IMG_0681I’m a little weird in that I’m deathly afraid of thunderstorms (yes I know it’s lame, but growing up in California we don’t have thunderstorms). Lu normally sleeps on a mattress pad in our closet, but as soon as she hears the thunder outside, she springs onto the bed, hops right over Sean and comes to cuddle with me. You know how dogs have thundershirts to calm them down, my dog is my own thundershirt. She’s extremely protective.


Having a dog is great and I truly think her presence helps when I’m sick. Studies have shown just five minutes with a dog lowers your stress level. When lupus flares are triggered by stress, it makes sense that having a puppy around means fewer flares. Petting a dog lowers your heart rate and blood pressure, which is extremely important if you have any sort of kidney problems.

I know it’s hard to stay active when I’m not feeling well, when my energy is low and I’m in pain. But even when I’m in pain I have to take her outside, I have to walk around the parking lot at the very least. It is a way to keep me active. This may seem hard for some people, especially on days you can’t get out of bed (thank god I have help if I need it) but so many chronically ill patients don’t make any attempt at exercise because they think it’s too much. Walking the dog a great way to get a minimal amount of physical activity.

Besides, when you feel horrible what’s better than coming home to a dog who’s incredibly happy to see you. It puts a smile on my face every time.


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


“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.


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.

GREY AMY-194x260

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.

World Lupus Day


Today is World Lupus Day! Today I’m wearing purple for myself, my friends with lupus, and for the family members of friends who have passed from this horrible disease.


I woke up this morning and my early rising friends had put on purple too. My old tv producer Molly wore a HUGE purple ribbon this morning. My friend Odie, who also suffers from lupus wore lovely purple ribbons with butterflies to honor two family members who died from lupus.

I hope you wear your purple proud today!



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.


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.


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.




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