Have a Holly, Jolly, Fibro Holiday!

I'm hoping you all had a nice, relaxing Thanksgiving with family and friends. A trend I've noticed with those suffering from Fibromyalgia is, we all tend to be perfectionists, over-achievers, a bit (or a lot) OCD, and extremely driven. As someone without Fibro could imagine, having such an A-Type personality make its all the more frustrating when we can't be The Hostess with the Mostess, make every side dish and dessert in our cookbooks, and feed the entire neighborhood. In other words, we like to over-extend ourselves. We were mostly likely this way before we were diagnosed with Fibromyalgia. And now, we feel even more repercussions and find it harder to bounce back. 

As great as it may feel to be told how great your great-grandmother's biscuits came out, or how easy you make the perfect Turkey look, lets be honest, it doesn't feel good enough to over come all of the pain and fatigue you get to deal with for the next few weeks....and just to do it all again for Christmas? 

STOP THE INSANITY!!!!

There are things we can do to keep ourselves from suffering through the holidays. Things we can do that might even allow us to ENJOY the holidays. 

"I already enjoy the holidays," you say. 

Well, you can't tell me you enjoy being bed-ridden after making your perfect feast, just so everything can be perfect, in your mind, for that one day.

"It's what my friends/family expect from me," you say.

Let me explain something to you. Your friends and family will not love you any less if you ask for help. They will not love you any less if you relinquish some of the responsibilities. They most certainly will not love you any less if you ask to have dinner at someone else's house this year. But if you demand to be the only one that cooks, and demand the get together be at your house every year because it's the most central location (or whatever reason you use), they will almost always let you do all the work. 

In order to relinquish those responsibilities though, you've got to be honest with yourself first. What are you able to do without over-extending yourself? What shortcuts can you take that really, (be honest), won't make that big of a difference?

We aren't just talking about cooking here. Let's talk about cleaning, eating, shopping, wrapping gifts, and something most people enjoy with holiday celebrations, alcohol.

CLEANING

If you do end up being the one having the holiday get-together at your house, instead of cleaning the entire house from top to bottom, clean the areas that will be used, and shut the doors to the "off-limit" areas. No one has to know you haven't vacuumed your guest bedroom closet. No one will honestly care :)

FOOD

If you've done your research about Fibro, you know there are certain foods that make us feel worse, and some make us feel better. Do yourself a favor, don't eat the ones that are going to make you feel like crap. And if you do get the urge to consume every sugary treat your Aunt Sally made, maybe try to do it in small portions. Remember, just because you're on Holiday, it doesn't mean your Fibro is too. Also, if you have grandkids, nieces, or nephews, this is a great time to teach them how to make some of the family recipes! Let them do the hard work while you sit back (comfortably) and supervise. 

SHOPPING

Black Friday is already over with, but there is still one day left of the weekend sale, then of course Cyber Monday. Not to mention all of the other amazing sales you'll see over the next few weeks. Whether you have 20 people to buy for, or only 2, shopping is stressful. If you haven't already, I recommend looking online at your favorite stores before going into them. Many websites let you check in-store availability before you make the trip to the crowded shopping center. If the store has it in stock, many will let you purchase your product online and pick it up in the store. If they don't have it in stock, then you can go ahead and take advantage of purchasing it online and having it shipped directly to your home! No trips to the mall or fighting crowds are necessary! Seriously, take advantage of the awesomeness that is Technology.

GIFT WRAPPING

Not only is this a time consuming task, it can often times be a physically draining task. Do you have grandkids, nieces, nephews, neighbors with kids? Pay them a nickel for every gift they wrap! Not only will they be learning the value of working for their money, your pocket book won't suffer from paying some expensive service in the mall to wrap your gifts for you! (Obviously you can pay them a little more if they're old enough to know the value of a Nickel these days haha). The gifts may not be wrapped perfectly, but they'll have charm and it will be a story to tell your guests that will make them go "Awww!!!"

ALCOHOL

As many of you know, my husband and I have recently decided to no longer drink alcohol. This was our personal choice based on how it was affecting our lives (and mostly interfering with my medication.) All of us can admit, drinking with friends at Holiday parties is fun, but it's not usually worth it for how crappy we feel the next few days. No, I'm not talking about a hangover. I'm talking simply about how alcohol interferes with our medications. Many of us are on anti-depressants (Cymbalta being the most common). Those of us who have been taking anti-depressants for some time know that missing a dose is BAD BAD BAD. Well, drinking alcohol is almost the same as missing a dose. You might as well be flushing those pills down the toilet (and they are NOT cheap!) So, instead of drinking the spiked eggnog, champagne, or hot-totti, perhaps you can enjoy some sparkling white grape juice, or hot cider instead. 

Hopefully I've been able to give some of you a few ideas on how to make your Holidays a little more doable. I know most of this is easier said than done. I'm a control freak, I'll be the first to admit it. But I've learned not to sweat the small stuff (most of the time haha.) The most important thing is to enjoy and cherish the time with your loved ones. Being able to do that in the least amount of pain and stress is what we dream of, right?

My name is Baylee, and I am NOT an alcoholic.

I realized the statement in my last post may have raised some alarm with people who aren't around me all of the time. Yes, I have been sober for 5wks. Yes, society has conditioned us that when the word sober is paired with a length of time, it automatically means "ALCOHOLIC."  However, sober simply means "not drunk" or "not under the influence of mind altering substances such as alcohol, drugs, etc." So, leaving the stigma behind, yes I have been sober for 5wks (and 1 day) now. I have had plenty of opportunities to drink, but I haven't. I've even been offered alcohol by friends who know I have chosen to stop drinking, but I said no. I've chosen to keep track of the time for me. For the moments I try to tell myself, "It isn't that big of a deal. You can have just one drink," I can look and see that I've already put 5wks of work into it. Yes, that is a big deal, and no, I don't want to ruin that.

Do I consider myself an alcoholic? No. I don't. And here is why, (according to the medical definition of alcoholism):

-My body has never been chemically dependent upon alcohol. (Meaning, my body did not go through alcohol withdrawal when I stopped drinking.)
-I never showed up to work drunk, nor did I even drink every night for that matter.
-I did not experience social or health problems directly influenced from alcohol intake. (I'm sure it didn't help my health, but my health issues were pre-existing to any alcohol consumption on my part.)

Did I have unhealthy drinking patterns? Yes. I did. And I am admitting that to you all now for accountability. Alcohol was something I used to go to when I was stressed, or depressed. Many people go to food, cigarettes, promiscuity...I chose alcohol. I could drink to make myself sleepy, I could drink to make video games funnier, or I could drink to slow my brain down to keep from being extremely anxious about uncomfortable/stressful situations. Basically I used it to not have to experience life as it really was.

Yes. I realize alcohol mostly, if not completely nullifies the purpose of my anti-depressant. But it worked Right. Then. I'm sure anyone who smokes or used to smoke cigarettes can empathize with me. 

Was I wrong for depending on alochol to handle my emotions rather than dealing with them directly myself? Yes. Not only is it unhealthy for my body, it is unhealthy for me psychologically. It not only fed my addictive personality, it allowed me to avoid dealing with uncomfortable situations. It allowed me to run away. 

This new portion of my life is all about facing my demons/ghosts/fears...whatever you want to call them. I realize if I never face these issues, however small or big they already are, they will only continue to get bigger and eventually explode, causing yet another traumatic, dramatic experience in my life.

Ain't nobody got time for that.

I'm doing everything I can Right. Now. to break my old, unhealthy patterns that kept me in a continuous spiral over the past several years. Sometimes I will mess up, and some of this process is going to be rough as I figure out what works for me. But the most important part is that I've realized the "error of my ways" and I'm taking the steps to correct the behavior patterns. That, my friends, is what matters most to me. I ask for your support in this, but regardless of your support, I'm doing this for me so that I may be a better friend, daughter, wife, and some day mother.

The Process of Acceptance

Yesterday I made 5 weeks sober.

"The only solution is to let go of who you once were and try to embrace the person you are today."

This is one of the many statements I wrote down when I first started brainstorming for my blog. It was followed by the questions,

"Who did I used to be?" and "Who am I now?"

To be honest, I'm not even sure I know the answers to those questions. But I'm going to try my best to answer them now...so bare with me here. It might be a little rough.

Who I used to be: Emotionally reactive, whether it be happy, sad, frustrated, or down right angry. My emotions always led the way. There was no hiding it. Some people referred to me as "high strung." I can't say that I would disagree. I overloaded my plate ALL of the time. I wanted to do everything for everyone. I was completely and totally insecure about everything. When I say everything, I mean down to every. word. that. came. out. of. my. mouth. Everyone who was nice to me, I assumed they were just "humoring" me. Even though I was successful with my job, I required confirmation from my boss or other peers to feel validated that I really was doing well. In fact, I required validation of my feelings about most anything. 

Constantly I felt guilty because there was always something wrong with me. When someone would ask what was wrong or if I was in a bad mood, I'd normally lie and just say I was tired. I felt like a hypochondriac. I didn't understand why, at the mere age of 24, I felt so bad all of the time. I was destructive. Emotionally and physically. I'd literally hate on myself all of the time. I hated that I gained weight. I gained enough to where I decided I'd never lose it. It would be impossible. I hated that I was socially awkward, when all I wanted was to fit in (this stems back all the way to grade school.) I hated that I couldn't just "get myself together" and be "fine." Did I mention that I hated there was always something wrong with me?

 Physically I'd destroy myself by staying up too late, not sleeping enough, eating food that only further displeased my already messed up digestive system, and of course alcohol. Lots and lots of alcohol. If you're familiar at all with the show How I Met Your Mother, you'll understand when I say every time I drank, my mindset was, "Challenge Accepted." How much could I drink and manage to still stumble up the stairs to my bedroom. Or not. A few times I allowed relied on Jeremy to help me. The next morning I wouldn't remember things that happened the night before (which is bad since I don't remember lots of things when I'm sober either.) I hated myself for drinking, so I'd drink more to not feel so bad about hating myself. Yes I know, that doesn't make sense. But the mindset of someone with an alcohol issue usually doesn't make sense. I never felt like doing my make-up or hair in the morning, so I'd say I didn't care. But then I'd be self-conscious every day at work and feel ugly. Even though I had some really interesting and nice accomplishments, none of it really seemed to be that big of a deal to me. To sum it up, I hated myself and assumed no one really liked me either.

Who I am now: I'm still emotionally reactive, but I'm getting better at controlling it in certain situations. I've also accepted that my emotions make me who I am. I also have made it a point to remove myself from situations that I know will only increase my stress. (Stress is the easiest way to start a flare, for me at least.) I try my best to only associate myself with people who impact my life positively. I try to limit the things I commit myself to. I realize I can't fix everything for everyone. I try my best not to dwell on everything, especially the things I have no control over. My awesome friend Kalli has helped me a ton by helping me identify the things I can control, and quantify if the result will be "the end of the world," or what the worst case scenario really is. (Usually it isn't nearly as bad as I make it out to be.) 

I lost 30lbs before my wedding. By doing this, I realize it isn't impossible. I have put back on a bit of the weight I lost, but I don't hate myself. I'm not that little 130lb thing I used to be (and probably never will be again), but I have learned to dress myself appropriately where I can still be comfortable in my own body. And most of all, I have realized and accepted that my husband didn't fall in love with 130lb little ol' me. He didn't even know me then. He fell in love with the heavier, curvier me. And I feel secure in that. I've worked through a lot of the insecurities regarding my friends and the feelings of being "just humored." I learned to accept that its quite possible there are people on this planet that sincerely enjoy being around me. (Gasp!) 

When I'm asked how I feel, I'm honest, but I've learned how to phrase things in different ways to where I don't constantly sound like the Debbie-Downer I used to hate. Instead, when I'm asked how I'm doing I choose to focus on the good things going on in my life, thus giving me a positive answer. It isn't a lie to say, "I'm doing well." I have a lot of really great things going on, and I'm learning to cherish them as they are. I've also stepped out of the bitterness and started asking how other people are doing. I know that may sound extremely selfish, but used to I would never ask, "How was your weekend?" or other variations. Frankly, I didn't want to know because I knew it would be better than mine, because mine inevitably sucked. I'm getting better at what I like to refer as, "The Social Contract." I also realized that I do not have to drink alcohol to comply with, "The Social Contract." I do not have to drink alcohol at all for anything. So I don't. It's hard, especially at get-together's with friends and everyone is having wine or a martini. But my husband is encouraging, and so far I've done ok.

Most of all, I've begun to accept that I am enough. I do have times where I fall down the rabbit-hole of doom and despair, but for the most part I feel good about myself. I'm involved in an amazing support group, I get along with people at work, I'm confident my boss likes me, and I'm finally back at church. In spite of my pain and in the moments of sadness when I get frustrated that I even have to deal with this illness, I also know that God would not have given it to me unless I could handle it. This was a wake-up call for me. The moment I realized I had no control over my body, and never had, I was humbled to the grace of God and reminded that He has had control all along, regardless of my attempts to ignore Him. I was also reminded that I don't have to go this alone. My hope is only that I can continue on the right path and to lean on God when I need strength. 

So it seems that letting go of the old me would be easy since the old me didn't seem to pleasant...but it was hard. And I still hold on to bits and pieces of the old me. I'm still cynical about most things, but I'm much more open to positivity than I was before. I have chosen to be Happy.

The Life of Retail: Oh, the Humanity!

(My retail friends and fellow retail retirees will appreciate this.)

Oh my, where do I even begin. 

Retail is one of the most common jobs in the United States. From small businesses to big corporations such as Wal-Mart, Best Buy, and Macy's, retail is everywhere. It is what I consider one of the many unfortunate necessary evils in our world. There are so many things that go into making a Retail business successful. This post will be speaking mostly about the bigger Corporations.

Several roles are required to run a large Retail business. Remember the PC game Sim's Theme Park? You created this huge theme park and had to place workers everywhere to run the place. Little messages would pop up and alert you to complain about puke not getting cleaned up fast enough from one of the roller-coasters, or the trash not getting taken out fast enough. It was intricate, and unless you could effectively manage all of these little imaginary people, your customers would walk out because your bathrooms smelled or you ran out of corn dogs. Sometimes you'd get so many notifications it'd get over-whelming. Ridiculous for just a game right? Welcome to retail.

Let's rewind the clock to five years ago, when the economy still sucked, but it sucked just a little less. 

There was a different team for everything....

Inventory: Received the truck, pulled down the big items like TV's and large appliances, performed carry-outs for customers, did weekly counts of the items in the store, and they sent back items to manufacturer's that were "past their date of selling".

Merchandising: Stocked items, put signs up in the store, changed all of the prices and set the new ad on Sundays.

Loss Prevention/Asset Protection: Basically security. They watched the cameras, greeted customers as they came in, and said good-bye as they left. Checked receipts, called for carry-outs.

Customer Service: Returns/Exchanges

Cashiers: Rang stuff up (duh)

Sales: In my previous employer's terms that would mean MP3, TV's, Audio, Computers, Appliances, Cameras, and Media (CD's/Movies/Video Games) were all separate. 

I think you get the idea of the separate department thing now. Each of these departments had their on personal supervisor and manager. That's A LOT of sups and managers. And that's just at the store level. When you start adding in District and Territory support, corporate teams in charge of writing the HR policies, the out-sourced call centers for HR support, payroll, accounting, marketing....then you have the international relationships. It's fascinating how many people are involved, just so people can walk into a brick and mortar store and buy a new release movie every Tuesday, or a new TV because the most recent thunderstorm zapped theirs out. 

Now fast-forward to the present. The thousands of people who made up that very corporation...take a third of it away. The amount of different roles in the store, cut it in half. In stores that used to run 6 managers, they now only have 3. Where there used to be 8 supervisors, there are only 4. (Yes I'm sure you understand the concept of "half" but I'm shooting for context here.) Keep in mind, even though the number of employees has decreased, the number of tasks and responsibilities to run the business has not decreased.

I get it. The economy SUCKS right now. Sure, cut the amount of jobs. That will save boat loads of money. Everyone is doing it. But what does this mean for all of the store level employees? More work and more responsibilities. Aren't all of the District, Territory, and Corporate employees affected too? What about the ones who lost their jobs at the Corporate level? Well I'll tell you what happens. Most of them will receive a large severance package that will keep them going for quite a while. And those who didn't lose their jobs? Well they still get to work Monday through Friday, leave at 5pm, and spend evenings, weekends, and holidays with their families. They get to take 4 or maybe more vacations a year because the business will run without them.


The store level employees however work the nights and weekends and holidays, so consumers can wait last minute to buy gifts, so people can go buy a TV at 9 o'clock at night. (Who needs to buy a TV that late at night!?!?) I get it though. It comes with the territory, you say. That's what you sign up for when you decide to work retail. And it all comes down to money. People need to make money so they can support their families. Retailers need to make money, so they make their products available for more hours per day to be consumed, just in case someone might think, "Hey. I think I'd like a new TV," at 9pm one night. It's all about money. That's what makes our world go 'round. Money, money, money. 

So the pressure from Corporate starts coming down on Territory staff, then it trickles down to District, then they put pressure on the store Managers, which then gets transferred down to the store employees. The store employee who was once responsible for one department instead of four departments feels the pressure. Oh man, do they ever. They are expected to work longer hours, over-time, answer their personal phone any time of day even when it's their day off, and even expected to come in on their day off. What about their personal life? Well you can forget it. Unfortunately, it seems the money is more important.

This, my friends, is NOT what a person signs up for when they choose to work retail. Not if you're working part-time and getting paid minimum wage with no benefits or bonuses. When the head count gets cut, the responsibility increases for those that are left. But it's funny how the pay doesn't increase. Even if only the increase was a small amount, the money could still save money. It seems though that the majority of the bigger corporations have lost sight of the fact that it's their employees that make them the money they're so obsessed with. This brings me to my next point....

BLACK FRIDAY: The biggest shopping day of the year next to Christmas Eve. It's what every large Retailer spends their entire year planning for, and where you'll see fights break out over a "good deal" on the most popular toy of the year as early as 2am. When you choose to work retail, you inevitably sign up for working Black Friday. It's a non-negotiable. I'm sure you all have noticed though that over the years, the opening time has started creeping up a little earlier each year. When I first started retail, we opened Black Friday at 5 or 6am. (It was a while ago, I don't remember exactly.) The opening was early, but it allowed the employees who had to work the morning shift to at least spend a full day celebrating Thanksgiving with their families the day before, and get a semi-normal nights sleep before encountering the craziness that is Black Friday. This past Black Friday, my 6th in retail, we opened at midnight. MIDNIGHT! Employees working the morning shift had to show up as early as 10pm on Thanksgiving night. That day, our store was open a full 23hours straight. So not only did we have to come in earlier, some of us worked anywhere from 11-18hr shifts. Some of us were lucky and got to split them between two shifts and catch a nap at home in between. But several people commute to work, so running home and taking a nap wasn't really an option in between shifts. So in order to get enough rest to work the insane amount of hours that day, most people had to cut their Thanksgiving day festivities short. I personally went to bed at 3pm Thanksgiving day, to wake up at 8pm and get ready for my 14hrs of craziness. I got to see my family for 3 hours on Thanksgiving. Some "holiday" right?

This year, Wal-Mart has announced they will be opening their doors for Black Friday on Thursday at 8pm. This is two hours earlier than last year when they opened on Thanksgiving day at 10pm. They aren't the only ones either! See a list of retail store opening times here. 

First off, It's called Black FRIDAY!!!! For pete's sake. But, as we established earlier, its about making that extra buck. Who cares that the employees are going to be sacrificing time with their families. Now I will say, some companies are offering incentives to those willing to open on Black Thursday/Friday. Target is offering bonuses to their employees who will come open their doors at 9pm on Thanksgiving night. However, Wal-Mart is offering NOTHING. And I'm sure they aren't the only ones. And because of that, this is what they're getting.

That's right. As stated in the article, employees started their strike in October. A full two months before Black Friday. 160 employees walked out between 28 different stores. Now while this is a very small amount compared to Wal-Marts 1.4million US employees, it's a start. Tons of other strikes are planned for Black Friday that will include more people walking out, Flash Mobs, and other special surprises. What will it take to make this insanity stop? As also stated in the article, employees have attempted several times to organize a Union to stop the inhumane treatment. But Wal-Mart leadership retaliates on these employees by cutting their hours, basically forcing them to find other jobs to support their families. (I'm pretty sure that's illegal.)

Wal-Mart is just an example of the crazy treatment employees are receiving in the world of retail, where customers money comes first. As consumers, I must ask you, when dealing with anybody regarding business, please remember they are humans, too.They deserve to be treated as so, not as servants. Especially in a Retail environment. When it comes to the Holidays, namely Thanksgiving and Christmas Eve, remember those employees have families too. And although they did sign up to work retail, they don't always get to choose the conditions they are put in just to make a living for their families. Furthermore, please don't be one of those jerks that walks in 5 minutes before closing on Christmas Eve, then get angry when they kick you at precisely at closing time. It's not their fault YOU waited until the last minute to buy your gifts. And it's most certainly not their fault YOU waited until the last day of the sale to come pick up the $199 laptop the ad said the store would only have 5 of. 

<Let the comments commence. Family friendly venting is encouraged.>

Baylee's Fibro Team

You know the saying, "It takes a village to raise a child." Well, I feel like we could also apply that to Fibromyalgia, only it would be, "It takes a team to support a Fibromite." Or something like that. I'm sure you guys could come up with something better. 

The point of this post though is to give a shout out to all of the different people who make up "Team Baylee." They will be listed in no particular order, by the by.

Dr. Collins- My rheumatologist, the sweet lady I see once a quarter, and the lady who hooks me up with my meds. Every appointment we go over my pain levels, she re-examines my body to check for new issues, and she makes it a point to address not only the pain but the psychological side of the disorder. She's listens to me when I tell her something isn't working, and she is always helpful when I call to ask about adjusting my medication. This woman has definitely found her calling. Every time I leave my appointment, no matter how upset or discourage I was when I walked in, I always feel refreshed and ready to go fight some more. 

Target Pharmacy Team- I LOVE my pharmacy. I get the best customer service from them (except for one time, but it was an isolated situation.) I can never keep track of which medicine I'm actually supposed to be picking up. All of my med refill dates over lap and I never know which one is up. The few times I've ran out of refills they've taken care of me and are always willing to contact my doctor for me. They are just AMAZING! 

Rachel- The nice lady who used to listen to me talk once a week. I don't see her anymore for financial reasons, but she was there through everything that happened over the year before I got my diagnosis. She is the first therapist I've seen that I have actually been 100% open and honest with. She helped me through several previous existing issues, and gave me great advice for the current situation I was in. She gave me tools that I will be able to use for the rest of my life to deal with stress that don't include medicating myself. That in itself was worth all the money I could ever give her.

Dr. Pace- My chiropractor, my life saver. He has never lost faith in my ability to get better. He encouraged me through my weight loss before the wedding. I was always so excited to report my new results to him! He was there through all of the frustration of my diagnosis process and what I went through at work. Him, his wife, and staff all genuinely care about both Jeremy and I. We love them to pieces and consider them family!

My Mom and Dad- My mother, who also has Fibromyalgia, is the person I call when I want to vent, celebrate, or just get an outside perspective. I don't have to pretend with her. If I feel like crap, I can just tell her I feel like crap, she understands, and vice versa. If I need to get my head straight I can ask her if I'm being crazy or if I'm valid for feeling the way I do. I know she'll be honest with me. She's always told me, "There's nothing you will ever do or see that I haven't already done or seen." As a kid I always just laughed and shrugged it off. I have since learned that it's absolutely, positively true. She seriously knows everything. Dad has always taken such good care of Mom when she would flare. And he did an even more amazing job taking care of me as a child when Mom was feeling really bad. Now that I'm an adult, he has turned into a wonderful friend that I can ask advice from. Or we can just talk about music, movies, video games...he's just a wonderful support role that I know will always be there to love me and help if I need it. I couldn't and wouldn't trade that sense of security for anything in this world. 

Friends- There are so many friends I depend on, and they're all in their own little category. I have the friends who can always make me laugh when I'm frustrated or sad, the friends who I can vent to and no matter how crazy I sound they'll always offer to go beat someone up just to make me laugh and feel better. I have the friends that drag me back to reality when I've gone down the rabbit hole of depression/anxiety and start freaking out about something I have no control over. I've got my Facebook Fibro friends, my Twitter FIbro peeps, and of course my gals of Faith, Hope, and Fibromyalgia. Those ladies have made such a huge impact on my life and I've only known them three weeks. Namely, Joy Peterson, the founder. She checks on me daily via text or email, we pray for each other and pray over our husbands that God will give them the strength, patience, and energy to help take care of us. I've got my friends who live far away and we only talk through Facebook. I can't tell you how amazing it is when I see you guys following my posts here or on Twitter. It seriously means the world to me that you would even be interested in learning about Fibro! THANK YOU! Your support uplifts me daily!

Jeremy- I know you guys are probably sick and tired of hearing me go on and on about my husband and how awesome he is. But you'll just have to get over it :) He's SUPER awesome. He has the patience of a saint, and the tolerance of a wooden statue. Sometimes I don't know how he puts up with me, but I know without a doubt he loves me. This is another sense of security I am thankful for. I know he will be there for me. Always. Love you babe :)

Maggie- This amazing woman is the one I call my Best Friend. I can't help but using that term. We've known each other going on 13yrs. She is the ying to my yang. We're complete opposites but fit so well together. She has inspired me to write and reach out about Fibro, like she has about Crohn's. She has been so encouraging throughout the entire time we've known each other. She stuck with me through all of my crazy boyfriend nonsense in high school and my huge heart breaks in college. She's seen me at my best and most certainly at my worst. Some people mistake us for sisters, and we used to call ourselves The Grace Sisters back in high school. (The most clumsy in real life, yet graceful in dance.) She was the Maid of Honor in my wedding, and one day my kids will call her Aunt Maggie. Even though she's in Chicago and I'm in New Orleans, we still find time to talk and check on each other. This friendship is one that will, with no doubt, last a lifetime. 

It goes without saying that God is on Team Baylee as well. I know I'm exactly where I'm supposed to be in my life. I feel that more right now than I ever have before. 

And there you have it. I hope I haven't left anyone off. There are so many people who I know support me, so please don't be offended if I didn't list you by name. I love and appreciate every single one of you. 

<Who makes up YOUR Support Team?>

Fibro Fog Moments

Fibro Fog...my fickle friend... Otherwise known as:

Brain Fart
Losing your place
What's that word?
Zoning out....  


What were we talking about? Oh, right, Fibro Fog. One of the least physically painful symptoms of Fibromyalgia, but in my opinion is equally as frustrating as the chronic pain. How on earth could forgetting a word or zoning out be just as frustrating as hurting all of the time? I'll tell you why. Because Fibro Fog likes to rear its space-cadet head at the most inopportune moments, usually when you're actually feeling decent and doing well.

For once you're able to sit down and have a good conversation with your mom, sister, friend...whoever. You're feeling better, they're making you laugh, then you think of that funny thing that happened the other day that you should totally tell them. And then it's gone. Sometimes mid-sentence, sometimes before you can even get it out. And once more, you're reminded you aren't nearly as sharp as you once were. You aren't the old you. The one that was quick and witty, the one who could stand her ground in debate and never lose her place. Yeah, that isn't you anymore. Now you recluse from conversations, especially with people who don't know about the Fibro...people who would only look at you like you're stupid. 

Then there's the times when it happens at work. You're on the phone with a client and they tell you their name, you go to write it down in the same moment and it's gone. So then you have to look like the inconsiderate Customer Service Representative who couldn't bother to remember their name and ask for it again...possibly one or two more times. Or maybe by that time you've just switched to calling them "Sir," or "Ma'am," because it's too embarrassing to ask for their name again. Thank goodness for those two words. They really save me sometimes.

My favorite though is the conversations with my husband. Two of the most common questions I get from him is, "Remember? I told you that the other day," or "We talked about that already. Did you forget?" Yes. I did forget. In fact, I usually have no recollection of the conversation at all. Like zero. It never happened. Whereas used to I would argue to the death that I was right and we absolutely did NOT talk about whatever subject it is...I have now learned to accept and basically assume he's right. Because more times than not, I am wrong. My short-term memory is basically non-existent. Sometimes I get to play the fun game of, "Did I say that out loud or did I just think it?" Never being sure can make things quite interesting. 

My friends and husband like to joke about my ADD. I've never actually been diagnosed with ADD or ADHD before...and I'm honestly not sure how much of my space-cadetness (yes I just made that up) comes from the Fibro Fog and how much could possibly be attributed to something else such as OCD or ADD. All I know is I'm spacey, I forget things all the time, and my brain is usually going a BAJILLION MPH. And I do tend to get frustrated with myself when I cannot cognitively function up to par with the rest of my friends. 

<What are some of your best/worst Fibro Fog moments? Please share!>

30 Things About My Illness You May Not Know

This post was originally supposed to be done during Invisible Illness Week (Sept. 10-16). At that time though I hadn't joined the awesome world of online health networking, so...I kind of missed it. However, I think the concept of this post is really interesting. My awesome Fibro-Sister, Untypically Jia, inspired me with her rawness and honesty. I hope to inspire someone else the same way with my own sincere answers to this exercise.

1. The illness(') I live with is/are:
-Fibromyalgia
-PTSD
-Depression
-Anxiety

2. I was diagnosed with it in the year:
Fibro- 2012
PTSD/Depression/Anxiety- 1999

3. But I had symptoms since:
Fibro- 2008
PTSD/Depression/Anxiety- 1992-1998???

4. The biggest adjustment I’ve had to make is:
Acknowledging my physical limits, and accepting my feelings/emotions are valid. 

5. Most people assume:
I'm just a whiner, I'm lying to get out of doing things, I'm always in a bad mood because my "resting" facial expression apparently looks angry...when really I'm just in pain.
 
6. The hardest part about mornings are:
Waking up and getting out of bed. To this day, my Husband still helps me up.

7. My favorite medical TV show is:
House

8. A gadget I couldn’t live without is:
My phone. It keeps track of everything for me.

9. The hardest part about nights are:
Staying awake long enough to get everything done.

10. Each day I take 11-15 pills & vitamins.

11. Regarding alternative treatments I:
Receive chiropractic care as often as possible (depends on $$$), go to support group meetings, do relaxation breathing, and I do yoga/stretching every once in a while.

12. If I had to choose between an invisible illness or visible I would choose:
Having a visible illness would be easier. But I feel like I've been given an invisible one for a reason...I've learned so much from it and it has made me a better person, in spite of the pain.

13. Regarding working and career:
Thankfully I am still able to work full-time. During my diagnosis process though, it was pretty touch and go for a while. I hope to finish my education in the next few years and continue working at this institution.

14. People would be surprised to know:
Recently my husband and I decided to abstain from alcohol consumption. It's been much harder for me than I thought it would be. I didn't realize how much I was using it to cope.

15. The hardest thing to accept about my new reality has been:
I'm no longer this young little thing that can stay up all hours of the night and go out. I have to be responsible. I have to go to bed at my bed time. Otherwise, I jeopardize my career and my future.

16. Something I never thought I could do with my illness that I did was:
Reach people all over the world. Currently I have reached people in Austrailia, Germany, Malta, and the UK.

17. The commercials about my illness:
Are stupid. Except for the fact that they use the word "Fibromyalgia." They do not portray the illness well to the general public. The one that sticks out the most to me is the lady laying on the red couch while all of her friends and family do activities around her in various locations. While we do feel depressed and like we can't get up sometimes, I feel like we could better educate the general populous about the sensory overload we experience and other illness' that sometimes accompany Fibro.

18. Something I really miss doing since I was diagnosed is:
Dancing

19. It was really hard to have to give up:
My previous job.

20. A new hobby I have taken up since my diagnosis is:
Blogging and community outreach

21. If I could have one day of feeling normal again I would:
Go to Disney World. I'd get there as soon as the gates open and I'd see everything in the park until it closed down without being tired. I'd eat all of the food I'm not supposed to eat. I'd ride the rides that would normal land me in bed for a week from being jolted around. And I'd walk around on my feet all day without my legs, knees, feet, or back hurting. It would be perfect.

22. My illness has taught me:
I've learned to cherish my body. I am now more careful of what I put into my body. I make sure to let my body rest and relax when it needs to. Our nerves can only handle so much. We are our body's manager. If we over-work our body and it under-performs, we are to be held responsible.

23. Want to know a secret? One thing people say that gets under my skin is:
You know I can't just choose one.
-Handi-capable. I appreciate your optimism, but it's actually offensive.
-Just try <insert suggestion here>. It'll fix you right up.
-Does it hurt?
-Just walk it off.
-Oh come on, you're such an old fart. You can stay up later for one night.
24. But I love it when people:
-Consider my health and ask if I'm up to doing a task before they just assume.
-Ask me how I'm feeling.
-Read my blog and give me feedback.

25. My favorite motto, scripture, quote that gets me through tough times is:Revelation 21:4
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.

26. When someone is diagnosed I’d like to tell them:
This isn't the end. There is life beyond Fibro, and it's a pretty stinking good life too, if you want it to be.

27. Something that has surprised me about living with an illness is:
I am more in touch with my body and my emotions now than I have ever been.

28. The nicest thing someone did for me when I wasn’t feeling well was:
<Insert anything my Husband has ever done for me.> I have been blessed with an amazing man. He goes out of his way every single day to make my life easier and more convenient. He remembers the things I forget due to Fibro Fog. He is most definitely my better half.

29. I’m involved with Invisible Illness Week because:
Well, I actually missed it. But I'm definitely going to be involved next year!

30. The fact that you read this list makes me feel:
Vulnerable, that you know all of these things....things I normally wouldn't share. Yet, I'm thankful for those who have taken the time to learn about Fibromyalgia. I will never be able to convey how much it means to me for you to care not only about me, but the illness itself.

Body vs Mind: The Civil War

I’ve been thinking about this post for quite some time now but I just couldn’t quite figure out how to word everything I wanted to say. Finally, I decided I’m just going to word-vomit it all down on here, do my best to edit said word-vomit, then post it and hope someone besides me understands what I’m trying to say. So, here goes nothin’…

Body vs Mind is like Fibromyalgia’s own Civil War. What I mean by that is, with all of the different aspects that the Body and Mind disagree on in cases of Fibro (or other chronic illness'), it’s like a bunch of separate battles happening all over that get wrapped up into one big war called Fibromyalgia. Make sense? Probably not, but I’ll try to explain.

Battle #1: My Brain says it hurts, but the medical tests say it shouldn’t.

To reference my last post, Fibromyalgia is invisible. When you first go to the doctor and start describing your pain, they’re going to run every test in the book. They’ll be looking for cartilage damage, tendon and ligament damage, auto-immune diseases, vitamin deficiencies, red/white blood cell count, cholesterol, kidney function, liver function…ok you get the point. If you have Fibromyalgia (and not any other prominent issue), all of those tests are going to come back negative/non-conclusive. They will find NOTHING. What will make the biggest difference in your life though is if your doctor has the brains to tell you, “It’s OK,” and that the negative test results are all part of the diagnosis process. You ARE NOT crazy. The pain is REAL. It’s just that all of the initial tests don’t go looking into your Central Nervous System. Even if it did, it’s not like your CNS is holding up a big red flag that says “Oh hey! I know the answer!” The CNS, being the complicated system that it is, does not tend to offer up much in ways of answers when it comes to Fibro, yet. Doctors are still researching to find definitive answers for us, and I have faith that they will.

Battle #2: My Brain thinks I can, but my Body says otherwise.

Sure! Your brain says it would be a great idea to go out clubbing with the girls until 4am. But your body is going to cruelly make you pay for it tomorrow (and probably for the following week.) This battle is one we Fibromites start fighting before we even get diagnosed. It’s the first official “Sneak Attack.” Once being diagnosed, you will gain extra tools in your belt to understand the “enemy.” If you choose to use the tools, you CAN win this particular battle and the enemy (your body) can slowly start becoming your friend once again. It all comes down to Acceptance. If you can accept that your Body is changing (whether you like it or not) and that your mindset must change with it, this battle goes down in your History as being a turning point in the long war that is Fibromyalgia. By listening to your body, you may feel like you are surrendering to it; and in a way you are. But by doing so you will gain the upper-hand and become triumphant once more!

Battle #3: I know I should listen to my doctor and exercise, but my body tells me, “No way, Jose!”

This is a battle I still fight each and every day. Even in my younger years, I associated exercise with pain. It was just a little more bearable back then since I loved marching band and teaching dance was one of my jobs. By now I’m sure you know there is currently no cure for Fibromyalgia, you should also know that there are very few remedies researchers have found that work. One remedy that has proven to work time and time again is exercise. I know; how in the heck should Fibromites be expected to exercise when we are fatigued and hurt all over? Well, here’s how: In terms of Fibro, exercise takes on a new definition with each Fibromite. Just like each person’s pain is different, the amount of activity that can be done differs with each individual. Once again, IT’S OK. This is another one I’ve had a hard time coming to terms with. Just because I used to be able to leap in the air and do the splits, doesn’t mean that in order to exercise I have to throw myself back into an Advanced Ballet class. (Trust me, I tried. It was kind of tragic. Follow the link if you want a good laugh, though.)

I understand that in Battle #2 I told you to listen to your body. Now it’s going to seem like I’m contradicting that very statement. I’m not, though; just consider this a grey area. In the times you feel like you just can’t move, the BEST thing you can do for yourself is to move (in most cases.) Your worst enemies in this battle are both your Mind AND Body. How? By being in pain, your Body is going to discourage you from feeling like you can do one of the two things researchers have found helps everyone with Fibro: EXERCISE!!! I’m not talking about running a marathon or lifting weights. If you know me at all, I have proclaimed running is against my religion since the 7th grade.

I have learned from my support group meetings that some of us walk with canes, some have to wear back and leg braces, and some of us have other illness’ that accompany our Fibro. But when we do our movement exercises as a group, everyone can participate. We do some of our stretching while sitting in chairs, some standing up, and some sitting on the floor. Just doing a small amount of movement allows blood to flow through our achy muscles and tired joints. It is the movement and energy flowing through our body that allows us to flush the pain/toxins out of the nerves. What happens when we get tired and we’re hurting? We lie down or sit down, often for long periods of time. Don’t get me wrong, I know resting is a huge part of feeling better; but if we only rest and never move, the energy and toxins in our nerves/muscles have nowhere to go. Instead, they stay put and muster, resulting in even more pain.

Battle #4: Mind over Matter

I can confidently say this is a touchy phrase for all of us. At some point in time, I'm sure some idiot, (pardon my honesty), has said to you, "You can control the pain. It's just mind over matter!"...or something along those lines. And as we all know, if we could simply will the pain away, we would have a LONG time ago. While we don't have control over the fact we have been given this chronic illness burden to bear, we do have control over some of the things that make our pain worse. I feel that its extremely important for any person with a chronic illness to take responsibility over the things they can control. We are our own advocates when it comes to our health, and when the effort is put forth, there are ways to make our quality of life the best it can be in spite of chronic illness. It is OUR responsibility to do that though. Not our doctors, not our caregivers, spouses, not even the medication. While we would love to depend 100% on all of those people/things, the only thing we can truly depend on is ourselves. No one will ever know our bodies like we do. If we listen close enough, our bodies tell us exactly what we need. However, until we've accepted our new friend Fibro, for better or worse, we won't be in the right head space to be able to utilize all of the tools and hints our body gives us to make our lives better. We most work with the universe, not against it. 

In my own personal struggle with Fibromyalgia, I have triumphed over Battles #1 and #2 (for the most part). My biggest struggle remains Battle #3. To this day, I have the hardest time finding the motivation to get up off my bum and stretch or just simply move around. The fact that I am able to do so little compared to what I used to be able to do often discourages me. I feel like the little bit I am able to do is insignificant. THIS IS WRONG. I am wrong. (Go ahead and mark it down in your calendars folks.) The truth of the matter is, when it comes to Fibromyalgia, every little thing helps. I feel like Battle #4 is a daily battle for me. Some days I want to lie down and blame the whole world. But on my good days, I get up, take responsibility for myself, and I fight like hell.

<No matter which battle you're currently in, please feel free to reach out to me for support. If you’re discouraged about movement/stretching/exercise or if you're interested in learning relaxation techniques, I would be happy to make recommendations that are simple based on what you are able to do!>

Removing the Invisibility Cloak from Fibro

DISCLAIMER/PREFACE: I am not a doctor/healthcare professional. The information I am about to share is collective of my own personal research/findings from various websites and articles. If you have Fibro, much of this information will not be new news to you. My goal is to share this information in a way that is easy to understand by people without Fibro, and also to be used as a tool for people with Fibro to share with others.

When most of you read the title of this entry, you’re immediately going to think of the awesomeness that is Harry Potter. (You have good taste, by the way.) Unfortunately this post has nothing to do with Harry Potter, Hogwarts, or magic of any kind. This post is going to be mostly informational, but not to worry! I promise to make it interesting!

Thus far in my blog, I’ve mentioned how Fibromyalgia is an Invisible Illness, and that there is chronic pain involved. I’ve told you about my personal experience with said pain, but I have not explained how and why the pain occurs in the first place. Don’t worry, I’m not about to throw a bunch of medical mumbo-jumbo at your face. This isn’t a pie throwing contest (although that would be fun, too). I promise this entry will be painless (Ha) and maybe even a little fun. So, let’s get started shall we?

First, let’s start with how pain is received by a person who does not have Fibromyalgia. Typically it goes like this:

• *Contact with stimulus -- Stimuli can be mechanical (pressure, punctures and cuts) or chemical (burns). 
• **Example: Hand touches hot stove.
• *Reception -- A nerve ending senses the stimulus. 
• **Example: Nerve says, “You idiot. I guess I better send the troops to alert the brain.”
• *Transmission -- A nerve sends the signal to the central nervous system. The relay of information usually involves several neurons within the central nervous system. 
• **Example: “Charge! The skin has been infiltrated! Alert, Alert!”
• *Pain center reception -- The brain receives the information for further processing and action. 
• **Example: ”OUCH! That’s hot!”

* http://science.howstuffworks.com/environmental/life/human-biology/pain.htm
**Baylee’s Examples.

People without Fibromyalgia have what would be considered a “normal" nervous system. Their nervous system can tell the difference between an un-harmful touch and a painful touch. For example, when a non-Fibro person sits down on a chair, nerve endings in their back and buttocks are constantly shooting signals up their spine to their brain so they can feel the pressure on their buttocks from sitting in the chair. Since their brain can sense that it is not a harmful touch, it sends back a “No Pain” message that still allows us to feel the sensation of pressure on our buttocks from sitting, but it does not cause pain.

People with Fibromyalgia have what is considered an “overactive" nervous system. Many articles and doctors say our nervous system is on “Sensory Overload.” Being that the nervous system is the director of The Five Senses, (Taste, Smell, Sight, Touch, and Sound), things get interesting when all five, or even just a couple of the senses are in over-drive. Often times in certain areas of the body, un-harmful touches are interpreted as painful touches. Because of this, a simple hug or squeeze on the arm can be nearly debilitating. The best way I can personally describe it is it feels like someone poking at a bruise. My sensitive areas are the sides of my legs, calves, and arms.

In addition to the over-loaded touch-sensors, a person with Fibro may have extreme sensitivity to lights, sounds, and smells. (I personally have not experienced a heightened sense of taste, but I’m sure it happens.) Sometimes I feel like I have “pregnancy-nose.” I will smell things and ask my husband if he smells it too, and he’ll just look at me like I’m nuts. Loud, abrupt noises always make me jump, and I  prefer a darkly lit room to bright fluorescent lighting.

<Do you have Sensory Overload problems? If so, what are they?>

Another way a person with Fibromyalgia experiences pain is in their joints and muscles. This is usually referred to as “widespread pain.” Widespread pain occurs when the nervous system gets overloaded with messages of perceived pain from the nerves. When the brain gets overloaded with these messages, it can’t keep up with the “No Pain” replies that should be getting sent back down to the nerves. Instead, the brain (figuratively) throws its hands up in the air, leaving the overload of pain messages to land where they “fall.” This allows the pain messages to get sent back out into the body like an “Out of Office Reply.” Only these replies do not have a set destination; thus, widespread, sometimes randomly placed, pain. 

Over several years of research, doctors came up with eighteen (or nine pairs) of trigger points to test. In order to be diagnosed with Fibromyalgia, you must have a minimum of eleven “active” trigger points. (You also must undergo several blood tests to rule out other diseases.)

These trigger points are found in the following areas on both the left and right side of the body:

• Back of the Neck
• Elbows
• Front of the Neck
• Hips
• Lower Back
• Knees
• Upper Back
• Shoulder

To view a trigger point map, go here.

As you can see, most major junctions in the body are listed above. Not everyone with Fibro has pain in each one of these points, but as stated above, you can bet there is pain in at least eleven of these locations. This is why you often times hear someone with Fibromyalgia say, “I hurt all over.” We really do! Because each Fibro patient is different, each person has an extremely personal, customized treatment plan. If you have a good doctor, your treatment plan should be continuously evolving with your Fibro symptoms. No one day is ever the same with our trickster, Fibro. However, being in touch with your body and learning your limits definitely helps to avoid major flares.

A common misconception about Fibromyalgia is that it is a Disease. This is FALSE. Fibromyalgia is a Syndrome. What’s the difference? I thought you’d never ask! 

Highlighted below are the two qualifications Fibro does not meet, meaning it cannot be a Disease:

Disease: a morbid entity characterized usually by at least two of these criteria:

1.     Recognized etiologic agent (cause)

2.     Identifiable group of signs and symptoms

3.     Consistent anatomic alterations

Syndrome: a collection of signs and symptoms known to frequently appear together but without a known cause.

Simply put, Fibromyalgia is not what is there; it is what is not there.

Confused? Don’t worry, keep reading!

We still do not know the cause of Fibromyalgia. Many believe the development of Fibro can be attributed to a physical or emotional trauma. (I personally agree with that.) I will say, if there is one thing to be thankful for regarding Fibro, there are no “consistent anatomic alterations.” AKA: Fibro does not cause joint damage, or any other alteration to the body like an auto-immune disease would. It is literally INVISIBLE!!! No test can “find” Fibromyalgia. It is also extremely common to have other illness’ that coincide with Fibromyalgia that are visible, such as: Irritable Bowel Syndrome, Depression, Anxiety, etc. This is why in order to be diagnosed with Fibromyalgia, one must undergo several tests to rule out other diseases (many of them being auto-immune.)

Therefore, because we do not know the cause of Fibromyalgia, and it does not cause internal or external damage to the body, it cannot be a Disease. SYNDROME, SYNDROME, SYNDROME!

/steps off soapbox

Lastly, let’s talk about the word “Fibromyalgia” and why it was chosen to represent the many symptoms that encompass this chronic SYNDROME. Here’s the breakdown:

Fibro -- Fibrous Tissue (This is where the overactive nerve endings live.)
My -- Muscles (Where some of the pain is felt.)
Algia -- Pain

Pain in the fibrous tissue and muscle. Make sense? See, I told you this would be easy!

Hopefully I have been able to help you “remove the Invisibility Cloak” from Fibro for yourself or someone else!

<Are there any examples you like to use when explaining Fibromyalgia to friends/family/co-workers/strangers? If so, please share!!!>