Job Candidate: The Bipolar Narcoleptic with Fibromyalgia?

"Be the change you wish to see in the world." I end every article with this quote from Gandhi. It's a mantra of mine and I do my best to keep it at the forefront of my actions. But would you change your mantra and, by extension, your actions if you realized it was hurting your chances finding employment?

Over the last two years I've been diagnosed with fibromyalgia, narcolepsy, and bipolar II. I have used ChickOpinion for the last year as a platform to educate people about what these conditions are and how they affect the people who have them. It's my goal to help people who have these conditions cope better with them, and to help people without these conditions learn more about them. Only through education will people truly have compassion. 

I have never been shy about talking about these conditions. It has been my experience that the best way to educate people is to be honest and open about what I go through on a daily basis, so that, hopefully, they can learn from me. More than anything, I want to help people. This has been an uphill battle for me for almost two years now. If I can make that battle easier for someone else, I'll do whatever it takes.

These conditions come with massive stereotypes:

• Fibromyalgia - in pain, lazy, unaccountable
• Narcolepsy - lazy, unsafe, unreliable
• Bipolar II - crazy, unstable, depressed

You don't realize that you're being put into these stereotypes until you take a step back and look at the big picture. For me, my biggest moment of realization came last week when I was mulling over my job situation. Before my diagnoses, I was offered every job I applied for. In the last year, I've applied to over 80 positions, gotten 1 interview, and am still unemployed. I can't prove anything when it comes to discrimination or prejudice in hiring committees, but if you Google my name, you see "fibromyalgia" and "bipolar" first. 

I have done my best to embody my mantra and be the change that I wish to see in this world. I want to give hope to people who don't have a clue how to start living after their diagnoses. I want to make having a neurological condition socially acceptable. I want to be seen as who I am, not as the sum of my conditions. Instead, employers just see a liability.

I am going to continue to talk about all of these conditions, because not enough people speak up. 

I am never going to hide my conditions out of fear, because that only perpetuates the silent spiral of ignorance. 

I am going to be stronger than someone who has never faced conditions like these, because I will not give up.

"Be the change you wish to see in the world." --Gandhi

5 Things Fibromyalgia Books Don't Tell You

There are many books and articles out there that tell you lots of things about fibromyalgia. Here are five very important things you should know:

1. Mood disorders come with fibromyalgia. You don't necessarily have a bad mood because you're irate about being in pain all the time. One of my doctors is amazing and she published this article about diagnosing fibromyalgia and how mood disorders are often co-morbid with fibromyalgia. I used to be diagnosed with generalized anxiety disorder (GAD). Then I saw this awesome doctor and we talked for two and a half hours. She came up with bipolar II--a much more fitting diagnosis than GAD.

2. Some days you'd rather not be productive than actually be productive. It's way easier to sit on your butt and not do something than do something and hurt so much you have to quit. Quitting sucks. That's the hard truth of it. It's horrible. And people with fibromyalgia have to quit a lot of things they used to do: sports, work, going out, things they loved doing. Some days it's too hard to have to quit again. And you'd rather sit the day out. Just let it go by without quitting anything. Some days that's easier.

3. You start relying on things you never thought you would care about. I cancelled my cable about a month ago. We didn't need it and we were paying way too much for it. Before that, I watched "Good Morning America" every morning. And then I didn't watch it for a month. You wouldn't believe how much I missed starting my morning with Robin, Sam, Josh, and Lara. It had become a part of my days. I tweeted GMA and they tweeted me back. There was some part of me that had gotten to "know" them. I know it sounds stupid, but I needed them. We got an HD tuner over the weekend and today I got to watch GMA again! It was so good to see them again!

4. You will have to fight for your relationships. I got engaged after I was diagnosed with fibromyalgia. I asked my new fiancé if he'd thought about what it would be like to live with someone with a chronic pain condition or not. He said that he had and he was willing and happy to be with me. So, I thought that was it. But now that we're married, I want so much more to be the best wife ever. And I'm not the wife I want to be. It changes our relationship--he's a caretaker as much as he is a husband. And that's not the husband I want him to have to be. We fight for our relationship every day.

5. You will be angry and scared and upset more than you will be happy--but when you're happy, you will be happy. There are so many days that will suck more than you can every imagine. But when you get a good day, you will be over the moon, I promise! You will try to pack it as full as you can of everything you need to do: errands, phone calls, cooking, cleaning, and tons of other things! And you'll be so happy and so full of energy and life! And then the next day, you are going to hurt so much and be back where you were before your great day. But those days are so worth it! And you'll learn now to not completely pack your day full to the point of exhaustion!

Be happy, be healthy (as much as you can), and keep smiling!

"Be the change you wish to see in the world." --Gandhi

"Bipolar" is Not a 4-Letter Word

Three weeks ago I was diagnosed with bipolar II. It runs in my family and I've had friends joking about me having it for years, so it wasn't a huge surprise to get the diagnosis. I've been on medication trials for a couple of weeks and, while it's hard to find something that doubles well with the fibromyalgia, my mood has improved amazingly. I feel happy for no reason sometimes again, it's easier to not sweat the small stuff, and my relationship with my husband is better than ever!

The only hard part about this diagnosis has been peoples' reactions to hearing it. Some people immediately feel uncomfortable and ignore that I've just said something: "Oh...and how is your husband's job going?" His job is amazing, thank you. Some people feel like I need to be reassured: "It's okay. Everything will be okay." Yes, I know. Some people want to know if it's curable and act like it's a cold or the flu: "When will you get over it?" Never. This is just the way my brain works.

Bipolar II is not the "bipolar" you see in the movies. I don't stay up for four days straight obsessing over one hobby or project. I don't start screaming at people over the the tiniest things. I don't go from depressed to manic in 20 seconds flat. I go through a similar cycle to this, but over the period of a few weeks, not minutes. For a few weeks I have the tendency to be irritable, tired, and generally grumpy. Then I have a few days when I don't need as much sleep and I'm alert and happy.

Bipolar II is nothing to be afraid of. I am so thankful for this diagnosis! This helps everything. Yes, I'm doing medicine trials to try to make my pain more bearable. Yes, I've sent out over 70 job applications and I'm still unemployed. Yes, I am throwing up and having migraines almost every day because of the medicine.

But, I'm not crying every day over little tiny things anymore. I don't see myself as a victim of my circumstances anymore. I'm not scared of the future anymore. I'm happy! And yeah, I still get frustrated sometimes, but that's not because I have bipolar II--it's because I'm a person.

Please don't tiptoe around acting like bipolar II is something to be ashamed of. Keeping it in the shadows just makes it harder for those of us who actually have it and aren't ashamed of it. Ask questions, read articles, and talk about it!

"Be the change you wish to see in the world."--Gandhi

9 Ways to Make Your Mess Your Message

Robin Roberts, anchor of Good Morning America, is one of my personal heroes. She underwent a bone marrow transplant last Fall and has stayed incredibly emotionally strong through it all! My favorite saying she has is "make your mess your message." As I've been going through this year of learning how to come to grips with fibromyalgia and not being able to use my teaching degree, I've been trying to think of ways to make my mess my message. I'm driven and I want to help even if I'm not able to teach, so I've given it a lot of thought. Here are 9 ways to make your mess your message that stretch across a few areas, so hopefully everyone can find at least a couple points that help them.

1. Educate people about your "mess." One of the biggest problems I've come across with fibromyalgia is that it's still very misunderstood. Robin ran across the same problem; she had to educate people about MDS and bone marrow transplants. Helping people learn about whatever you're going through is very important.

2. Start a blog. Even if writing isn't your "thing," blogging is a great way to talk about what you're through and help other get answers. It's also incredibly cathartic--sometimes you just need a place to get something off your chest.

3. Hop on social media. Sure, it takes a while to get a lot of "followers," but once you get going, you've got a lot of people who will potentially see your message about your mess and be able to relate to it.

4. Make sure you're okay. Making your mess your message is great, but if you're not in the right emotional place to talk about it all the time and help other people with their problems, it won't go very well for anyone. Do whatever you need to do to make sure that you can stay strong. Robin not only had her family and friends to help her get through her transplant, but she had all the GMA viewers rooting for her. Now, we don't all have millions of people thinking about us every day, but if we pull together we can at least have a couple hundred strangers rooting for us. :-)

5. Volunteer. I love helping other people! If you are going through something, go find other people who are struggling with the same thing and help them out. It helps them and makes you feel better, too!

6. Create a clothing line. If you're a designer, don't you do your best work when you're inspired and emotionally connected to your ideas? So how great would it be to make a clothing line that had everything to do with your "mess" and then donate some of the proceeds to a charity that has something to do with your situation?!

7. Write a book. Will it get published? Possibly. But even if it doesn't, make it an eBook and just give it to people to help them. And you'll get your message out.

8. Start a charity. Maybe there isn't a charity in your area for your cause. So start one!

9. Be fearless. Here's another Robin quote that I've had as my computer background since February: "You can be fearful or fearless...I chose the latter." Anyone who has a mess that's worth making their message can easily become afraid of all the "what ifs." But being fearful takes a lot of energy and it doesn't let you think big or think forward. So leave the fear behind and choose to be fearless. There will be days that are hard, but if you're fearless, hard days are just little bumps in the road instead of huge hurdles.

I hope this post helps some people choose to make their mess their message. Stay strong and be fearless!

"Be the change you wish to see in the world." --Gandhi 

5 Steps to Get from Grumpy to Groovy

I slept terribly last night. I never get enough sleep, and the sleep I do get is always filled with weird dreams (last night was about a hurricane on Lake Ontario...where did that come from?). I woke up this morning in one of the worst moods I've had. It didn't help that the humidity level was at 91%; the higher the humidity level is, the more pain I'm in. The minute I woke up, one of my amazing kittens that I love so much (note the sarcasm) decided it was snuggle time and stuck his wet little nose in my face and would not go away. This was at 5:30 in the morning. I was so grumpy!!!

I've now been up for three hours and am still walking around with a black cloud over my head. My fiancé is working 16-hour days this week, I have to get the house ready for our families when they visit tomorrow, I'm working on our wedding invitations and they're not going well...I could go on all day! 

BUT...I realized that I need to get out of my funk because I have a lot to do today. So here is a five-step process to get yourself out of a funk! Before I write about each of these items, I'm going to actually do it to make sure it helps. :-)

1. Eat something healthy. I just ate a banana and Greek yogurt. Already feeling better!

2. Take a shower. Yes, I just left this for 20 minutes so I could go shower to see if it helps. And it does! Wait a second--did I just catch myself thinking a positive thought?! Uh-oh...! :-)

3. Put on clothes that make you happy and feel good. Leggings and a sweater dress for me today! I know I have to clean and I generally wear jeans to do that, but even though jeans are practical, my skin is so sensitive today that the denim is "hard" and they hurt. Today is about feeling good! :-)

4. Make a list or schedule of your day. Here's mine: dishes, counters, stove, invitations, RSVPs, vacuuming, clutter pick-up, nap. Feeling a little overwhelmed, but at the same time, once I'm done with my list, I get to watch last night's Project Runway!

5. Blast some music to get you going! I have 50 channels of music on my TV and Pandora on my computer. Easy enough to find something to get me pumped up! 

Wow. After about an hour of all this, I am no longer a grumpy grouch! :-) I highly recommend doing this if you're in a funk.

"Be the change you wish to see in the world." --Gandhi

Unemployment Rate Drops!

I got a job!!! :-) So, technically that means the unemployment rate has dropped! Yesterday I got asked to interview for and landed a virtual assistant job for an eco-friendly product company out of Brooklyn. It really seems like a perfect fit! It's going to be part-time at first, going to full-time on an as needed basis. 

I've had a long stint of being unemployed...about a year and a half. I quit my receptionist job before my last year at school because I was too busy to work and student teach. Then I was diagnosed with fibromyalgia before I graduated from college, so I didn't get a teaching job after I got my degree because I can't have a job that is so stressful.

When I moved to Florence, KY I started this blog and then two months later, I started my site. So far I've made $11 in ad clicks from them! :-) I've been published by ThoughtfulWomen.org almost 60 times. I started my Etsy shop a few weeks ago, but haven't gotten any sales yet. Even though financially it doesn't look like I'm doing very well, my "brand" is growing! Yesterday I was asked to contribute to a blog because of a tweet I sent. When people I've tweeted have met me in person, they don't know "Kinsey" but when I tell them that I'm "ChickOpinion" they're thrilled to meet me! 

Building a brand takes time, and I'm pretty happy with what I've been able to accomplish in a relatively short time. I am, however, very happy that I get to add a job to the mix so we can have some supplemental income! Unemployment gave me the opportunity to create the ChickOpinion brand and get the ball rolling, but I am not really well-suited for unemployment; not because of the lack of money, but because of a sense of not doing enough for other people.

So, here is my advice for all of you who are unemployed (not by choice): 

• Commit yourself to something and work on it every day. Someone will find you and recognize your work! I didn't even apply for this job--she found me! She needs a social media guru and realized that I'm a good fit. 
• Apply for everything you can. 
• Don't limit yourself to what your degree says you can do. I've applied for everything from assistant positions to social media director positions to online elementary teaching positions. My degree is in K-12 music education. If you think you can do it and it's something you're interested in, go for it!
• Be honest with your potential employers. I was very forthcoming with my new employer about having fibromyalgia and not being able to work 24/7. She ended up being amazingly caring and very cool about it. If you don't have an employer who is going to care about you when they know everything about you, would you really want to work for them?
• Don't give up. You will have hard days and feel like you're never going to be good enough, but it'll be okay.

Sending happy thoughts to everyone today!

"Be the change you wish to see in the world." --Gandhi

GMA's Robin Roberts Returns!

Good Morning America/Ida Astute

This morning we welcomed anchor Robin Roberts back to Good Morning America! She contracted myelodysplastic syndrome (MDS) as a result of her chemotherapy for breast cancer a few years ago. Here is an explanation from her doctors of the procedure that would fix the MDS: a bone marrow transplant.

Robin has been off the job for 174 days! She has recovered remarkably well, starting dry runs of GMA in January and coming back for her first show today. Her doctors said today that she will be taking it one day at a time because some days she won't feel well enough to come in to work.

Fibromyalgia is not nearly as crazy as MDS or cancer or anything, but I feel like all of us who have something we are trying to get through can take inspiration from Robin's story. When her doctors mentioned that she would taking it day by day, I smiled because I know exactly what that's like. I never know when I'm going to wake up feeling good and ready to go, or in so much pain I can barely move.

Robin's photo should be in the lexicon next to the phrase "the power of positive thinking." I know that she always knew in her heart that she would get better and come back to work. There were days that were struggles, but she never gave up. And now she's back, sooner than any of us ever imagined she would be!

Even though I know my fibromyalgia might never go away, I believe in the power of positive thinking and I need to practice it more. We are only truly victims of our conditions when we refuse to see the light. Robin saw the light and still does. The rest of us would do well to follow her amazing example. :-)

Robin, I've never met you, but you have helped and will continue to help inspire and motivate me every day. Thank you.

#WelcomeBackRobin

"Be the change you wish to see in the world." --Gandhi

Almost 10,000 Hits!

I'm 24 and I graduated from college almost a year ago. I'm engaged and planning our wedding for this summer. My fiancé and I live together in a small apartment close to the high school where he is the choir director and theory teacher.

I started the ChickOpinion blog in late August as a way to stay connected with the world while I dealt with my fibromyalgia diagnosis. I've talked about politics, social issues, religion, and personal struggle. I've also gotten almost 10,000 hits in less than six months! I know that that's not "viral," by any means, but it seems like a lot to me. :-) I've also gotten 6,000 hits on my website that I started a few months ago.

I am still unemployed. I've applied for over 50 jobs and haven't gotten any of them. Granted, I've got fibromyalgia so that limits the kind of job I can have. But it's not like I'm not keeping busy--I have a wedding coming up, I'm opening an Etsy shop (today, hopefully, if I can figure out the tax code!), and I do a lot of the household chores.

So how is it that I still feel like I'm just on the brink of something big? I know that a lot of us dream of doing something that gets attention on a big scale. I used to want to be a well-known inner-city teacher, something akin to Erin Gruwell (the "Freedom Writers" teacher). Then I wanted to be an amazing education researcher, published in all the great journals. With the fibromyalgia diagnosis, all of that was put on hold, but I don't think the passion is gone.

I've always had this drive and a knowledge that I can do something bigger than what I'm doing at any given time. I also have an intense urge to help people. I'm really good at social media networking and I feel like that's going to do something for me sometime soon. Hopefully. I'm not necessarily on the drive to be "famous." I don't want to come off like that. I just want to use the abilities I have to help other people, whether it be fibromyalgia patients, third-culture kids (I guess I should do a story on this soon), or smart unemployed young people.

The hats and scarves my Mom and I sent to Hurricane Sandy victims.

So, whether it be through writing, fashion, education, or volunteering, I hope I inspire you. Please keep sending me your stories--they inspire me every day!

"Be the change you wish to see in the world." --Gandhi

Social Media and Philanthropy

Social media has become a part of what I do every day. I started my ChickOpinion blog in late August. I started my Twitter account somewhere around that time, too. It seemed to be going well, so I started ChickOpinion.com in late October. That is also going well.

Andrew Springer explaining our engagement photo!

I've been going nuts on Twitter lately, trying to get my name (well, ChickOpinion's name) out there. In the last week alone, I've been tweeted by Ginger Zee (meteorologist for Good Morning America), four of the local ABC news anchors and reporters, the local ABC station, CNN Presents, Sam Champion (meteorologist for GMA), a few writers for different newspapers, Anderson Live, Project Runway, Andrew Springer (social media strategist for GMA and ABC News), Tyra Banks, Jo-Ann Stores, Dan Harris (anchor for GMA), The Katie Show, and Lara Spencer. Today one of our engagement photos was on GMA Live because I tweeted it to them. One of my tweets was also on Anderson Live earlier this week, but wasn't read on air.

It's been a little bit insane, but here's why I'm glad it's happened: I want to make a difference. We're coming up on the one year anniversary of my getting diagnosed with fibromyalgia. It has been an interesting year: diagnosed with fibro in January, narcolepsy in April, graduated from college in May, got engaged in June, moved to Florence, KY in July, my fiancé started a new job in August, I started volunteering for the Obama campaign in September, and I've been working on my blog/website all fall. I don't have a job. I can work pretty hard (seated, not standing) for about three or four hours and then I have to take a break. I am definitely not the only one in this position. People all over the country (especially women) struggle with this.

I want to create a nonprofit organization, called "FibroPhilanthropy." One of the best things for my pain is to make and give things to people who need them. Two weeks after Superstorm Sandy, my mom and I sent 15 hats and 25 scarves to the victims in New Jersey. My mom makes adorable little kid hats and I knit and sew, so we got busy! I loved spending my time making things for people I knew would be so grateful for them. It was the best couple of weeks I've had in the last year--I was happy, my pain was manageable because I wasn't having to move around much, and I was helping people. 

With FibroPhilanthropy I want to make it possible for fibromyalgia patients to make things (scarves, hats, blankets, clothes, sweaters, anything else people can make) for disaster relief to send to victims of natural disasters. Patients all across the country can make anything, we can collect the items, and then the second a natural disaster happens, we send everything we have to the victims. Then we start all over again! If it's a nonprofit, we can be exempt from taxes but still take donations, so the materials and postage could be paid for by the organization. I know first-hand that most fibro patients can't afford to do this on their own.

I know I've been a little over the top lately with the tweeting, but it's one way to get people all over the country to see what I already have on my site and, now that I'm posting this, what I want to do in the future. Maybe we can raise enough awareness that we can get the funding we need to start this nonprofit organization and be ready to have a batch of warm items ready to send out by the time the next natural disaster happens.

Please share this, email it, retweet it, favorite it, or whatever you need to do on the social media platform you use to raise awareness of this idea. I would love to get as many people involved as possible so we can help everyone we possibly can!

"Be the change you wish to be in the world." --Gandhi

Mannequins that "See" You?

Kitten snuggle time. :)

Good morning! I can't tell you how happy I am to be writing this early in the morning! I quit my pain meds last night and I was shocked when I heard my fiancé's alarm go off this morning at 5am. I haven't heard it in a month! I got to spend the morning with him while he got ready to go teach. I haven't done that in so long. My kittens and I got to have snuggle time while I watched Good Morning America while it happened (not tevoed!).

The down side of all this "awakeness" is that I'm seeing a lot more. The first thing I said when I sat up in bed this morning was, "Omigosh. Apparently I didn't do laundry last week." Josh laughed and said, "I mentioned that multiple times." Oops. Then, I walked into the kitchen and realized that the floor needs to be washed. And the counters need to be washed. And the sinks. I guess I haven't done anything for the last month!

I'm awake and don't feel groggy, but I still am having vision problems. Also, not surprisingly, the pain has come back with a vengeance. But I am in such a great mood, I don't really care. I am coherent, I got to kiss my fiancé goodbye, and I can remember things! I was definitely right: not having something for a month makes you so much more thankful for it!

So, I guess in line with my "name" being "ChickOpinion" I should have an opinion today about something on the news. Here you go!

There has been a development in technology that is hitting the stores. This BusinessWeek article explains the EyeSee, a mannequin that uses facial recognition technology with a camera through a pupil in the mannequin's eye to collect shopper demographic information so the store better understand its customers. Does this sound creepy to anyone besides me?

While the article claims that the mannequin doesn't store any images or data, I call bulls#!t. I don't believe that at all. If you stop to look at a dress or top on a mannequin it's taking in all of your visual data. The fact that the above-mentioned article mentions this has already changed store displays and layouts means that it obviously stores and assimilates data for a certain amount of time. What's keeping the store from downloading those images and data?

I like the person in the article who says, "If you go on Facebook...you can see exactly what information they're going to collect and what they're going to do with it. If you're walking into a store, where's the choice?" Agreed! I have not given any of the stores I go to permission to take my image. The article also mentions that the company responsible for these EyeSee mannequins is also working on "ears" for the mannequins so they can eavesdrop on what the shoppers looking at the display are saying. Wow. That's not an insane invasion of privacy at all...*sarcasm*

So, I think the moral of this story is, if you see a mannequin with a pupil and you don't want to have your image recorded, cover your face. As for me, I think I'll be utilizing fake mustaches and lots of hats.

Well, maybe it's not really my look...

"Be the change you wish to see in the world." --Gandhi

5 Things to Keep Me Going

Today marks the start of a journey for me. I'm going to start titrating down off of my pain meds. That means I'll be in pain, but hopefully I'll have my brain back. I've felt like I've dropped about 30 IQ points in the last month and I've decided that I would rather be in pain and learn how to manage it the best I can. The following things are what I need to remember while I'm starting to feel the pain again.

I have a wonderful fiancé. One of the reasons I want to get off the meds is so I can be back to my old stubborn sparkly self. I want to remember the times I have with him and I want to be cognitively available for him. I am so incredibly lucky to be with him.

I live in a house where we have a room solely dedicated to computers and crafts. My craft room is for stuff. We have a whole room just for things. That's more room than about 5/6 of the world has. It's amazing if you think about it.

I am close to a lot of my family. So many of my friends aren't close to their families. They "hate" their mom or their dad's never been in the picture. I live only an hour and a half away from my parents and my sister and love going back and hanging out with them. The rest of my family is out west and, while I'm not physically close to them, I get to talk with them on the phone and there's no bad blood in my family. I like that and am thankful for it.

Even though I've got fibromyalgia and I'm in pain, it could be so much worse! I could have a disease that could kill me or a degenerative disease or something like that. Yes, I'm in pain, but honestly, I'd rather have this and be able to think and work from home than be in the hospital for the next few years until I die.

I have food that is nutritious and tasty. The fact that I have incredible choice in what I eat is something that, again, 5/6 of the world doesn't have. I am so lucky.

So, the next few weeks are going to be hard. But I have everything that I just mentioned, as well as the site (that I'm really excited to be updating soon!), so I need to remember all of this when I'm hurting. Thank you to all of you for allowing me to have this wonderful job!

"Be the change you wish to see in the world." --Gandhi

Are You Defined By Your Diagnosis?

Today I was watching "Good Morning America" (people who think I'm one-note, please keep reading; this isn't a political post) and Catherine Zeta-Jones was on the show talking about the movie "Playing for Keeps." After talking about the new film, Elizabeth Vargas asked her about her bipolar disorder. Catherine said something that struck me: "I'm tired of talking about it. I never wanted to be the poster child for this. Everyone has their own thing and we all deal with it the best we can and then keep going."

I feel like even though Catherine Zeta-Jones doesn't want to be a spokesperson for bipolar disorder, just saying what she said will inspire people with bipolar disorder. She has it and is coping quite well. People who have bipolar disorder and are struggling will be able to see her success and be inspired to get their lives back on track.

I was diagnosed with fibromyalgia almost a year ago and narcolepsy six months ago. While I don't want to come across as a victim or define myself by my medical diagnoses, I feel like it is important to talk about it. I agree with Catherine in that playing a victim is not the way to handle it, and everyone has their own thing going on in their lives. I disagree with her, though, in that I think it's important to talk about it and raise awareness.

I have been on experimental medicine for the last month and am going off it next week. I can't wait! I feel like it's made me lose 20 IQ points, I can't focus on anything, and I've gained six pounds in a month. When I get my brain back, I'm planning on writing an e-book about being a young person with fibromyalgia. So many young women are being diagnosed with it and coping is incredibly difficult. I want to write the book to help people, not to whine.

When I was diagnosed in January and having a breakdown about it, my fiancé told me, "This is something that will make you stronger in the long run. Right now it feels like you're in the furnace, but you will come out a stronger person." It's so true. I feel like I'm on the cusp of getting out of this metaphorical furnace. It hurts every day and it will continue to be hard, but it's going to be okay.

Actually, it will be great. I won't settle for anything less.

"Be the change you wish to see in the world." --Gandhi

The American Dream: Where Does Money Come In?

Last night the winning numbers for the largest Powerball jackpot of all time were announced. There were two winners and it's all over the news this morning. Everyone can't wait for the winners to come forward so we can see what they decide to do with the money.

I got to thinking about this: these people might be wonderful people with great intentions doing amazing things, but no one has heard of them; until now. Now that they have won a lot of money, suddenly the press will be watching what they do. Thinking about this was a stark realization for me: money gives you power.

I know that this is not exactly a bombshell; "money is power" is a saying that is common. But it made me sad to realize this. I feel like it's a very different "American Dream" than the one my ancestors had. It used to be that the American Dream was to work hard and earn enough money to provide for your family. Now, the American Dream (as I see it) is to have excess and not necessarily have to work hard for it.

I live the American Dream every day by fighting through the pain, the dizziness, the emotional instability, and everything else that comes with fibromyalgia. I live the American Dream by helping the victims of Superstorm Sandy even though I don't know them. I live the American Dream by taking an active part in my democracy. I live the American Dream by continuing to write even if I know only 50 people a day are reading what I write. I live the American Dream by continuing to have hope even while I receive rejection letters from all the sites I write to asking if they'll consider having me as a contributing writer. I live the American Dream by not giving up.

I want to be powerful before I get a lot of money. I want to be the voice of women who are struggling with fibromyalgia and anorexia and can't work. I want to inspire other people who have dreams and have to work to get them. I want to be the new face of the American Dream.

Getting interviewed as I left the polling location on Election Day.

"Be the change you wish to be in the world." --Gandhi

Medicine, Incoherence, and Love

Well, I feel like I need to have another personal post.

I have been late getting my posts up in the last couple of days and they haven't been very good, in my opinion. I just had to double the dose I'm taking of my pain meds. I am really feeling it. I am incredibly dizzy, very tired, nauseated, and forgetful. Honestly, I could deal with all of the side effects if I wasn't forgetful. One of my biggest assets is my memory. I was supposed to do laundry on Thursday. It's now Tuesday and I still haven't done it; not because I don't want to or something, but because I just forget.

I used to write my posts between 6:30am and 8:30am. It's now almost 10:30am and I'm just starting to become coherent. I'm trying to keep up with writing these posts in the morning, but I'm not sure how it's going. My page views have tanked and I'm incredibly unimpressed with my writing when I read it in the evenings when I'm actually awake. I don't have the energy or attention to look for sponsors for my site or promote it online.

It's affecting my amazing fiancé, too. I am our housekeeper, since he works a full time job, but lately I haven't done anything around the house. This morning I woke up after my fiancé was already up. I stumbled out and he looked upset and sad. I asked what was wrong and he said that he's worried about how this medicine is affecting me. I got upset because I really want to be the best fiancée ever for him, but the medicine is making it virtually impossible for me to be amazing. I am incredibly lucky because he loves me more than anything in the world, and he's worried because he loves me, not because he is upset about the effect the medicine is having on his life.

Please stick with my site; I'm probably going to start writing in the evenings and scheduling it to post in the mornings so my posts are a little bit more coherent. Also, check out the craft and food sections. I just updated those and there are some really nice things on there!

In terms of the morals of this post, be kind to people in your life; you never know what's going on in their lives. Yesterday when I went to the grocery store, I was getting some weird looks. I think I probably just looked really out of it. Be kind to each other.

"Be the change you wish to see in the world." --Gandhi

5 Weird Things

As many of you know, I have fibromyalgia: a syndrome in which the central nervous system mistakes every sensation for pain. I just started a new treatment regimen that has left me with very little energy. I am not turning this into a pity party, by any means. I just wanted to give an inside look into what having fibromyalgia is like.

I think the weirdest thing about fibromyalgia is what hurts me. Think about the everyday things you do. Now think about what it would feel like if every one of those things hurt. Here are some examples:

• Jeans feel hard against my skin.
• Loud sounds feel sharp inside my body.
• Crowds feel like hail inside my head.
• Bright lights feel like knives on my skin.
• Someone touching my skin feels like fire.

It's very strange to have this happen. A year ago, I was just fine. Now, I work from home, I can't go to the mall for long shopping sprees anymore, I hate going anywhere with large crowds, and I never know when I'm going to have a flare-up and have to cancel everything I'm planning on doing that day.

For those of you with fibromyalgia, here are some things I do that help my pain levels (other than medicine):

• Yoga
• Healthy diet
• Exercise
• Consistent schedule
• Relaxing

I know that it's not the ideal life: I just graduated with a college degree and I'm not using it. But you know what? I still have a great life. Yes, I have to deal with this, but I do what I love every day. I write, I cook, I knit, and I have the best fiancé of all time. Find what you love and do it. It's the best way to work your way through learning what your treatment plan needs to be.

Again, I'm not looking for sympathy; just raising awareness. If you have someone in your life who has fibromyalgia, understand that it is a real thing. They feel pain even though it's not physically there. They are not making it up. They want more than anything to get back to a normal life. 

Please be kind to each other.

"Be the change you wish to see in the world." --Gandhi

Letter to My 12-Year-Old Self

Good morning! I've been thinking about writing a letter to my younger self for a while, and one of my new favorite bloggers, AccordingToLara, inspired me to finally do it.

Dear 12-year-old Kinsey,

Hi! It's you in 12 years. Happy birthday! Enjoy your Harry Potter themed party--it's less cool to have a Harry Potter party when you're 24!

In six days, there is going to be a lot of confusion in the 2000 election. It's going to take until December to figure out who the president will be. Stop running around burning bridges with people, because Gore loses, and you're only 12. While it's important to be politically active, don't be a jerk about it.

You are about to find out that your dad has to have heart surgery. He and your mom are going to go to Texas for the surgery and leave your with your grandparents. He ends up being just fine!

In a year, you're going to move to Vanuatu. It's going to be scary and lonely, but you get to live right by the beach. Enjoy it while you're there. Don't stress out about what's happening back home, live in the moment. Breathe in every breath filled with the salty air and relaxed atmosphere; your life is going to change more than you can imagine when you move home.

You'll move back to the States when you're 16. You're going to feel incredibly out of place and do really terrible, self-destructive things to try to make it better. You won't listen to this, because you won't even understand it right now and when you do understand it you'll think you know better, but keep eating.

Also, be prepared for a relationship that will change your life. You will not be able to trust any man again for years because of this trusted adult who will take advantage of you. Keep going to your therapy sessions even though they open wounds you don't even want to remember. They will help, I promise.

When you're in college, you're going to vote in your first presidential election. Don't worry; your guy wins this time! Your parents will move to Ethiopia. Sounds like a long way away, huh? But don't worry; they come back after only seven months. They come back because your dad has to have heart surgery again, but just like last time, he's fine. :)

You're going to end up getting fibromyalgia. Doctors don't officially know what causes it, but I think the previous paragraphs explain the reason you get it. Keep fighting. It is so hard but you'll get better, because you don't have to fight alone. The most wonderful man asks you to marry him when you're 23 in your favorite place in the world: the Lamar Valley in Yellowstone.

Recognize this? It's where you go with your class three years in a row for Expedition: Yellowstone! You end up falling in love with this valley.

The ring is perfect.

You're going to work on the Obama campaign in 2012. I actually can't tell you how it turns out; the election is tomorrow! But I can tell you that this is the first time you've listened to my advice about not being a jerk to the other candidate. :)

You and your sister get to see Barack Obama in person! Oh--and you get glasses. You feel like you're going through a midlife crisis at first, but you do get used to them.

You're going to be just fine. Live in the moment and savor every day. Remember that your greatest asset is your heart, not your brain. You can empathize to the nth degree if you let yourself. Get that brain out of the way--you overuse it way too much! :)

Engagement photos! You're going to meet him more than three years before you start dating. Don't tell him, though!

You also fall in love with shoes.

You get two amazing kittens who love napping on you!

Love,

24-year-old You

"Be the change you wish to see in the world." --Gandhi

The Modern Woman: How Do You Define Being a Woman?

I've been a "feminist" my whole life. I was raised believing that women can do anything we want to do, and I have always expected that I would take the world by storm. I've always played with the boys and demanded nothing less than being better than them. To me, being a 21st century woman meant being a powerhouse career woman and defying all odds to beat the men.

This year is definitely not going how I expected it would go. I am not working a full-time job because I'm taking the year to learn how to cope with fibromyalgia and what my body needs to be healthy while it's in pain. I'm writing this blog and contributing to another site, as well as working on the Obama campaign. I live with my fiancé who is a high school teacher and when we moved in together, we came to the very practical agreement that I would do most of the housework, since he works full time.

To be completely honest, when it started, I loved it! I thought it was fun because we had just moved up here and everything was new. I was setting up house and playing the role of the 1950s housewife. It was fun, sending Josh off to work, then cleaning and making the house look nice while he was gone, and kissing him when he got home with dinner simmering on the stove. That lasted about two weeks.

I suddenly realized in mid-August that I was relying on a man to bring in money and I was keeping his house. I went through a major identity crisis. What had happened to the career-driven woman from my past? Was it wrong for me to enjoy staying home and making it look nice? Had I completely wasted the last five years in college getting a degree I'm not using? Was realizing that I want to have kids and be a stay-at-home mom good enough for me? What does "good enough" mean? It was the worst month I've ever had! I was engaged to a wonderful man who supports me doing anything (something I've always wanted), but I wasn't happy, because I couldn't figure out what I wanted.

Now, two months later, after weekly psychologist visits and continued support from Josh, as well as the success of this blog, I am comfortable with where I am. Is being a homemaker where I saw myself at 23? No way. But we can't ever imagine the curve balls life will throw us. I was diagnosed in January with fibromyalgia--how would I have ever guessed that this would happen to me? It's still hard sometimes, seeing Josh with his own classroom and program, because sometimes I feel like that's where I should be, too; but I'm learning to be comfortable with myself and my circumstances, and that's something that when I wanted to be a career woman I had never thought of at all. One thing I have found is that the more comfortable I get with myself, the less pain I'm in.

I absolutely can't wait to have kids and stay home with them*. I love having a clean house. I enjoy making food. I really like writing this blog. I love the fact that I don't have to miss work because I'm feeling bad on a particular day; I just relax and maybe the dusting doesn't get done that day.

I don't think the dream of being a powerhouse woman is gone at all. I just think that the perception of what a "powerhouse woman" is, has changed. I am going to be the best mom ever (except for my mom, of course!). I am working on having a successful "from home" blogging career. This blog is going better than I ever expected! It's crazy! I have over 3600 hits in less than 6 weeks! I look forward to being one of the logistics coordinators for the Obama campaign during GOTV in November. After the election, I can't wait to volunteer for a different non-profit organization. And, most of all, I love the fact that I'm getting healthier. I am proving that even though fibromyalgia can change the course of your life and take you where you never expected to go, you can make it something great and thrive. I am a powerhouse woman. I have to take naps and sit down a lot, but I honestly believe that I am on my way to being exactly who I never knew I wanted to be. :)

So, I guess I am a bit of a 1950s girl, but you know what? Being a 21st century woman means that you get to define what being a woman is for yourself. And I love being this definition of "woman" I've chosen for myself.

"Be the change you wish to see in the world." --Gandhi

*For all of you freaking out and wondering if I'm pregnant, I'm not. :) We are not having kids for a long time. I'm just looking forward to it when it does happen.

FLOTUS ADA Experience

I am currently at the FLOTUS event in Cincinnati waiting for Michelle Obama to speak. I am registered on the ADA list because this is a 3 hour long event and since I have fibromyalgia I can't stand for that length of time on concrete. We just stood in line for about an hour and a half and I'm already completely exhausted. While we were in line I was asked by about 6 volunteers if I was in the right place and when I said "yes" they gave me looks like they didn't believe me. When I offered to show them my doctor note they said they didn't need to see it, but they still looked very unsure. When I came in there were volunteers who asked about it and then were completely accommodating when I told them why I was on the ADA list. But there were a lot of the companions of the other people on the ADA list who were telling me, "Well I have fibro but I'm standing up" and "Well my aunt has a cane so you need to let her have your chair." Um...no, not a chance. We all have problems and that's why we're ALL on this list. I happen to have been waiting longer, so that's why I have a good seat. If there was literally no other chair and an old woman with a cane needed my chair, of course I would give it to her. But there were a lot more chairs behind me.

The fact that people are in a pissing contest about disabilities makes me so upset! And that companion who claimed she has fibro ended up taking a person's chair while they were in the bathroom and now has a better seat than I do. I'm glad she does have a chair now because she would have hurt a whole lot if she would have had to stand the whole time, but just because I look healthy and I'm young does NOT mean that you get to tell me what's best for me. That would be like me saying to someone with MS or cancer or something that you can't "see" just by looking at them, "But you look fine, why can't you stand for the whole time?" That would be highly offensive of me to say, and it infuriates me that fibromyalgia is so misunderstood by so many people that they are willing to discount any pain I'm in because I look great so I must feel totally fine.

Please be kind to each other today. There is always something that you can't "see" about someone you're interacting with, so be gentle with each other.

"Be the change you wish to see in the world." --Gandhi

I am so close to the stage! :)

Fibrobama

Good morning!

Yesterday was truly spectacular! My sister and I went to Eden Park in Cincinnati to watch Obama speak. We had a fantastic time; so much so, in fact, that I am going to be working on another page for my blog with photos and video of Obama I took, as well as news about him and a place to discuss it! It's going to be a huge part of the next six weeks' news, so it probably deserves its own page. Stay tuned over the next 24 hours for that page; I'll be working on it today!

As amazing as yesterday was, there were some serious consequences. I was under the impression that there would be chairs or benches or something for us to sit on. I was apparently mistaken. We were standing for hours on concrete steps once we got into the park. Before that, we were standing on the street outside because we were told that we had to take our camping chairs back to our car. All in all, we were standing or sitting on concrete for six hours.

As people were lining up to go into the park, there were volunteers taking people with walkers or canes into a different line. I asked one man if, since I have a chronic pain condition, I could get in that line, too. He said that it was only for people with apparatuses. I look completely healthy. So, this got me thinking: what does it take for a person with fibromyalgia to get the opportunity to get a chair? I started looking around online and chatted with a representative at americanmedical-id.com about it:

You are now chatting with 'Vanessa'

Vanessa: Thank you for visiting our website.  My name is Vanessa.  How may I help you?

you: Hi! I have fibromyalgia and was denied a seat yesterday at an event. I ended up standing for six hours and I am incapacitated today because of it. If I got a medical ID would that give me a shot at getting a chair next time?

Vanessa: That is awful to hear. I am sorry about that. Since all ID's are custom engraved we can have that info on any of the items

Vanessa: Have youhad a chance to browse the site? Do you see anything you like so far ?

you: Yes--I understand that I can get anything on it, I'm just wondering if people who haven't even heard of fibro will honor it if I show it to them.

Vanessa: I , unfortunately cannot answer that with certainty as everyone will react different to this information. Fibromyalgia is common and dont see why they would not honor it

you: Okay, thanks...I will talk to my fiancé about the IDs I like and I'll get back with you soon! :) Thank you so much for your help!

Vanessa: You are welcome.  

So maybe this is an answer! I asked on a fibromyalgia forum what other people do. I haven't gotten any responses yet, so I will update this later with their answers and ideas.

I think that my experience yesterday, though, is a reminder to all of us with chronic pain conditions, whether it be fibromyalia or CFS or anything else, that we need to take care of ourselves and choose what we do that is outside of our comfort zones. Any time we do anything that is out of routine for us, we feel it. We have to think ahead of everything we want to do, "Is this going to be worth it tomorrow when I can barely get out of bed?" Now, I feel like yesterday was 100% worth it, but I also wish I had been able to have a chair. This experience also throws into sharp relief that not everyone is educated on fibromyalgia and we need to continue to share what we go through every day with more people. 

Here are some good websites to go to if you would like to learn more about fibromyalgia:

US National Library of Medicine

Mayo Clinic

Web MD

Please raise awareness in your communities, whether it be in your neighborhoods or online. Fibromyalgia is real and needs to be made known. Maybe next time Obama is in town the "Fibrobama" fans will get a seat.

"Be the change you wish to see in the world." --Gandhi