The Break-Up Conversation

Today my rheumatologist broke up with me. 

Ok, not technically a "break-up" per se, but she basically said she can't do anything else for me since my auto-immune system isn't broken. Now I'm being referred to a Pain Management Clinic(PMC).

I haven't decided whether this is a positive, neutral, or negative thing. I've tried to read up a little on the PMC I'm being referred to, but there isn't much material online about it. It's just part of the hospital I already visit bi-weekly. Maybe I should start keeping track of my miles for tax purposes....*Memo-to-self*

Something Dr. Collins did mention today is that the PMC has access to a wider variation of treatment options such as other medications, topical treatments, and injections (yay...not). As if I'm not already a human pin cushion.

I don't really have anything productive to say...I'm mostly just going in circles inside my head about how much I hate this illness and how this isn't the way I thought I would be living my life. You know the papers you write in high school where they ask, "Where do you want to be in 10yrs?" I can tell you exactly what I DIDN'T write:

"Chronically ill, back and forth on the verge of being disabled, and heart broken over it all."

Don't get me wrong, I have a lot to be thankful for. 10yrs ago I hoped to be married, but I never knew how amazing of a husband God would bestow upon me. He is my rock and the reason I get out of bed every morning. I have a wonderful family and support system back home, and a team of medical professionals who really are trying to make it to where I feel better.

It's just that when I think we've finally found a plan that works, another hole appears in the boat, water shoots out, and we start sinking a little bit more. 

Where's the duct tape when I need it?

Train Wreck

"Train Wreck" is a pet name my chiropractor likes to call me on super special days like today. It makes me feel all warm and fuzzy inside.

Not.

As I lie here in bed on ice packs, missing yet another day of work, I have to wonder if I'm really going to be able to continue working Full Time like a "normal" person, or if I'm going to end up on Disability. The organization I work for right now has allotted me many wonderful blessings. I finally have a Monday-Friday 8:30am-5pm job. I never work on holidays. I get to take a two week, paid winter recess. And on top of it all, I'm finishing my degree for free at a prestigious school. What moron wouldn't just find a way to "make it work"?

The "make it work" solution has eluded me. It's not that I don't want it, which I have been accused of before. I just can't figure it out. My body is this puzzle that I'm constantly battling. It throws a different obstacle at me daily, often times multiple times a day. Just when I think I've got it managed, it throws another wrench in my pain management plan. And right now, I'm not doing a very good job at keeping up with it. 

At this point, I'm researching other solutions that will allow me to make the same, or close to the same amount of money, but where I can have more freedom if I'm having a really bad pain day. I currently hold a position to where if I'm not there, it's a pretty big hassle to find someone to cover me. And don't get me wrong, they have been more than understanding with me. But just a few weeks ago I did an 11 day stint in bed, 9 of those days were working days. Now I'm out again today. I know it looks bad to them, and I know they have a business to run. You put 2 and 2 together.

Employment options that give you more freedom are typically self-run/home-owned businesses or work from home stuff. I've researched work from home jobs extensively, and I'm having a difficult time finding the right fit. As much as I would LOVE to have a home-owned business, it's just not the time right now for Jeremy and I to go down that road. Someday perhaps, but not right now.

Next week I will be meeting with my rheumatologist. I'm having a full Thyroid Panel run and I'm having her test my Adrenal gland. But until then, until I get the results, I'm just stuck. I wake up in the morning and I hurt. I try to be optimistic and say, "Ok. I'll lay here 5 more minutes and maybe I'll feel better." But 5 minutes passes and it isn't better. So I try stretching for a little while. Still not better. So then I think maybe a shower will make it better...but it doesn't. Finally, I come to the realization that it's just not going to get better today. Those are the days that I stay home. Days like today, where I feel stuck and have no clue how to "make it work."

I am definitely a Train Wreck.

< Insert Something Inspirational/Educational >

Hey there fellow Fibro peeps, supporters, readers, and the person who accidentally happened upon this blog and doesn't know how or why they're here.

The last few days I've been searching for inspiration to help me write a new post. This is what I came up with...

....nada/zip/zero/nothing.

So today I'm literally going to word vomit the things on my mind. They may not flow well, and some of it might not even make any sense. Here we go...

My elbows hurt. And my shoulders. I'm sitting with an ice pack on my lower back. I came to work today in spite of having pains shooting down my right hip. Mostly because I missed work last week and two weeks before that. I'm not interested in making it a habit. My body is the most frustrating thing in the world. Jokes are constantly made about how complicated women are, that men (and women) can't ever understand the mood swings, double standards, illogical conclusions, and manipulative actions. My husband is always trying to predict how I will react to things. Any husband does this, I think. It's their job to know their wife well. I feel like I can understand his frustration with me finally. Currently I'm looking at my body and my mind as two separate beings. My mind is constantly trying to predict how my body will react, what consequences I'll have to endure depending on the activities I partake in. If I could understand my body and the repercussions I'd have to endure, I feel like I would HAPPILY walk on egg shells in order to not provoke the pain I'm experiencing right now. Today, right now, I would do anything to not feel like this.

Today is the first day I've come to work here without make-up on. I literally have not done that since I worked at Best Buy. Usually I'd be self-conscious about it. Today, for the first time in a really long time, I truly don't care. I've been asked, "Isn't there something you can take? Like ibuprofen?" 

If I'd felt like it, I would've laughed at that statement. But instead I answered, "Nope. Can't take anything but Tylenol and it doesn't do enough to matter. I took too much ibuprofen and other NSAIDs as a teenager and now my stomach is torn up over it." 

I don't WANT to have to rely on pain meds. I hate taking the amount of medications I take right now. I'm to the point now though where when my body freaks out like this for weeks at a time, I wonder how I am ever going to maintain a career. Or go to school for that matter. I'd be a huge idiot not to take advantage of finishing my bachelors while I work here. Not to mention Jeremy can go back for his...and if I'm here long enough, by the time my kids are of age they can come here. I can't imagine any of that happening. It all seems impossible. I don't know how I'm going to get through the day, let alone having kids in the next few years.

I'm afraid: absolutely terrified that my employers patience/understanding will run out. I'm terrified of going through what I went through at BBY. But it becomes difficult for someone without Chronic Pain to continue believing that yes, in fact, I do STILL hurt. Yes, it's been days/weeks/months, but it hasn't gone away. There isn't a quick, or long-term, "fix" for it. All you can do is learn to maneuver around it. And sometimes, Fibro likes to bring a gun to a knife fight. It isn't fair, but that's the way it works. 

It isn't acceptable to miss work consistently. Disability is difficult to get approved for. Even if I did apply for it, I would be basically consenting to never working again. I would be admitting defeat. And I wouldn't make as much money. Contributing to my marriage financially is important to me. Sometimes I can work. Sometimes I can't. But with Disability, you can't go back and forth from day to day or week to week. You choose Disability, therefore you are Disabled. 

Its not being Disabled that scares me. It's giving up on working. I like to work when I feel alright. I like to help people. I like trading crazy stories with my friends and family about the people I had to deal with throughout the day. 

But some days those same crazy people I deal with can cause me to go into a downward spiral if my nerves get bad enough. 

Nerves bad=Pain=Fatigue=Missing Work=Nerves Bad...etc. 

You get the idea.

I think I'm just going to leave it at that. No conclusion. No closure. Just "here ya go."

My word vomit.

When people ask, "How are you feeling?", can they handle the truth?

When a person asks someone with chronic illness, "How are you feeling?", most of the time the inquirer is not prepared for the answer. Here's the bottom line:

Chronic Illness is uncomfortable to talk about for people who have never experienced it. I've already done a post on "My Do's and Don'ts of Fibro Talk". 

Today though, we're talking specifically about the dreaded question, "How are you feeling?"

Why is that question "dreaded", you ask? Let me explain, from my personal perspective, at least.

When someone asks me how I'm feeling, I have two options:

1) I can give them the answer most people want to hear: "I'm fine." This relieves any responsibility of the inquirer having to listen, understand, or sympathize. Yet, it allows them to feel good about themselves for asking in the first place. It ends the conversation quickly and allows everyone to go back to their business. Done and done.

Yes. It sounds callous. But our society has resorted to empty greetings in passing because most people are too busy/distracted to really listen. It doesn't make them a bad person. It just makes them a typical human. When I answer like this and I'm not really "fine", I feel like I'm cheating myself and I hate not being truthful. Which leads me to my second option...

2) I can tell the inquirer the truth. Some days, the truth is "I'm fine." Most of the time, however, people inquire when they notice you aren't feeling/looking well. Personally, I feel guilty or bothersome when I answer truthfully. People who don't live with chronic pain are able to be more carefree and positive. I'm not saying those with chronic illness are negative, but a huge part of our survival is being real with ourselves. And just because we're acknowledging we aren't feeling well, that doesn't mean negativity for us. It's just another part of our typical day. We  rarely get "carefree days," if ever. I tend to feel like a Debbie Downer though when I'm honest with people about my pain levels because it isn't the "typical response" to the question. I tend to be emotional when I'm in pain anyway. So for me, the reaction from the inquirer can really affect the way I'm feeling about myself. 

Being honest with someone about my pain levels is a very intimate, vulnerable thing for me.  I don't like to admit my pain often. The less I talk about it, especially when its really bad, the less over-whelmed I get. I choose very carefully who I talk to about my pain and struggles. A statement I made in my "Do's and Don'ts" post is to please not handle me with kid gloves. If I openly talk to you about my pain, I'm not expecting you to fall all over me with sympathy. In fact, for those who know me, I tend to approach things with humor. Even though this illness is a very serious thing in my life, sometimes taking the seriousness out of it helps me to cope. 

The reality of it is, I'm reminded daily that I can't live my life like a normal 25yr old newlywed. So to cope, I like to say things like, "I'm going to cut off my elbow", or, "I really need a back transplant", or, "I'm going to punch my immune system in the face." Granted most of the time my friends and husband reply with, "I'm going to have to advise against that." But they understand. That's what makes me feel better.

However, in the rare times I am serious when I share how I'm feeling, I know it can be awkward for the person inquiring. What do you say to someone who has a condition that has no cure? I've already gone over what NOT to say. If you are ever in need of an appropriate response, here are some that could help:

"I'm sorry you're hurting. I'll pray for you."

"That really sucks man. Hang in there."

"I'm sorry to hear that. I hope you feel better."

However you decide to reply, remember to be GENUINE. We can spot fakes a mile away.

An example that actually happened today that is NOT an acceptable response (and a great example of Option #1's reaction) is this:

Inquirer: How are you feeling today?

Me: Thanks for asking… My back and hands are still really bothering me. My chiropractor told me I was a “train wreck” yesterday…and I do have to say, I feel like a train ran over me a few times. I think it’s just the fluctuation in weather. I’m hoping to be feeling better by this weekend. I’ve got so much to do with the church event on Saturday.

Inquirer: Great. Glad to hear you're feeling better.

I'll pause so you can process for a moment.....

Yes. That actually happened. And this is why I try to choose carefully who I am honest with. Clearly this is a person I should have replied to with, "I'm fine." They weren't really interested in the answer. 

My advice today is PLEASE don't be that person. If you're going to ask, be prepared that you may not get a quick and easy response. Our lives aren't quick and easy. Everything is complicated, and once in a while, explaining that to someone makes us feel a little better. If you are chosen to be that person we share details with, try to be a good listener. If you don't know what to say, its OK. Just don't respond like the person above did. A response that is inappropriate based on the information given is not only frustrating, its down right hurtful.

This post goes out to all of my fellow Chronic peeps that are afraid to answer with the truth. 

Insurance Companies are Communists

There is not nice way to say this:

My insurance company sucks. I have had nothing but trouble over the past two years since I started seeking treatment/diagnosis/etc. First it was my Chiropractor. God Bless him for helping us in spite of the crap my insurance pulled. I called them over and over and fought with them on the wording in the plan description. I consulted other people who had more experience with insurance lingo. Yet, the answer they gave me was, "It depends on how its interpreted."

SERIOUSLY!?! So what they were really saying was, "Well, today I feel like interpreting it so it says I'm going to leave you hanging with $1000's of bills even though we said we'd cover it at first."

Yep. Super awesome.

When I got hooked up with my Rheumatologist, I thought things were going alright. We had a very clear expectation of how much of the quarterly visits would be covered, plus all of the tests/x-rays/prescriptions that would be required during my diagnosis period. It still cost us a bit of money, but we made it work. We have finally gotten into a rhythm with my doctors visits and prescriptions...my pain management plan is working (mostly), and I feel better than I've felt in a long while. HOORAY! This is the ultimate goal of any chronic pain survivor!

Well go ahead and just smash that little happy bubble. A few days ago I received notification that as of January 1st, my insurance company is no longer going to cover my Cymbalta. For those of you who aren't as familiar with all of the different meds used to manage Fibro, Cymbalta is in a class of medications called selective SNRIs (serotonin and norepinephrine reuptake inhibitors). It is used to treat Depression, Anxiety, pain from Fibromyalgia, Chronic Low Back Pain, Osteoarthritis pain, and nerve pain from Diabetes. 

Cymbalta works differently for everyone, but for me personally it has been an AMAZING help. I have been on several different anti-depressants throughout my life, and from a psychiatric standpoint, Cymbalta has worked the best. (My husband and mother will attest to this too!) 

Some of you may be thinking, "Why don't you just ask for the generic?" or "Why don't you just switch to something else?"

It isn't that easy. Cymbalta has no generic available. It is extremely expensive. WITH my insurance, I was paying close to $50 for a 30day supply. WITHOUT my insurance, it will now be impossible for us to afford it. 

How much is it without insurance? <Drumroll>

$220 for a 30day supply. (For context, that's more than my car payment.) 

Needless to say, I'm going to have to change meds. Again. 

Let me tell you, transitioning from one anti-depressant to another is NOT a happy fun time. You have to be weened off of one completely before starting the new one. For me, my sensory overload gets put on over-drive, my (emotional) nerves freak out, and in general, I am just NOT fun to be around. High-strung and crazy is an under-statement. Or at least that's how I feel like I am during the transition.

So....I'm extremely fearful of the transition...and I'm especially fearful that whatever medication I get put on will not work as well as the Cymbalta does. 

So there you have it. Insurance Companies are Communists.

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.

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!>

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!>

Would you like a slice of Reality with your wine?

If there is one thing I can say without a doubt about myself, it’s that I tend to do things backwards or just completely out of order: willy-nilly, if you will. My willy-nilly nature made going through the five stages of grief interesting to say the least. Before my diagnosis, I spent much time being angry, then in denial about the condition my body was in. Those were my two favorite steps, and the ones I subsequently spent (spend) the most time on. Some days I’d pretend I was sixteen again and I could physically do as I pleased. I even went to a dance class with Jeremy’s younger sister, Victoria, just to show that “I still had it.” I don’t know who I was trying to prove “it” to. Myself, I suppose. However, I quickly learned that “it” was long gone and running as fast as Usain Bolt in the 100 meter dash, never ever to return.

We started with stretching. This I could do, mostly. We pointed and flexed our feet in a straddle.

What the hell…my feet are sickling. STOP THAT. Turn out, turn out!!!

(For the non-dancers, sickling means turning your foot in, instead of out. Bad ju-ju.)

Then we began the floor combinations. The nice 30-something year old teacher with her mid-drift showing (post-baby and looking darn good) quickly ran through the combination. I stood at the back of the line to give myself more opportunity to learn it. (My brain isn't that fast these days.) She added floor work to the beginning of the combo…I’ve always hated floor work. By the time it came to be my turn I decided to just go after it.

Fail.

            “Hold your center! Don’t fall out of your turn! UP UP! You’re behind! Chasse, Tor Jete, Soutenu, Plie!” the too skinny teacher shouted as I made my way across the floor with the grace of a walrus on dry land.

All of the little teeny-boppers were watching, smirking. I was mortified. Not only could I not complete a simple Pique turn without sickling my damned foot, I couldn’t get my fat arse off the ground fast enough to stay with the music. I stood at the back of the line once more, holding back my tears as Victoria gave me an encouraging look.

           

          “Don’t worry. I’m out of shape too. I can’t do near as much stuff since I tore my hamstring," she whispered with an encouraging smile.

That didn’t help. But she tried.

“It’s just so frustrating! I used to be able to do all of this, easy. And now I can’t even point my toe correctly!”

            

          Giggling, she said, “It’s ok. Neither can half of these dumb girls either. Just have fun!"

Once again, she tried, but it didn’t help. How was I supposed to have fun when I was failing so miserably at one of the things I used to be so confident in? This was one of the biggest ego-destroyers I had ever encountered.

  

It’s kind of funny how Denial has its way of hiding its big, scary-self when Reality comes to give you a swift round-house kick to the face. Right about the time my face met with the bottom of Reality’s shoe, I decided to add “Dancing” to my list of “Things I used to be able to do, but I can’t do anymore because of this stupid Fibromyalgia crap.” Ok, so maybe that isn’t the exact name of the list, but you get the idea.

There are several things on that list that I cannot do, at all, or at least without some assistance. The list includes but is not limited to: lifting heavy objects, vacuuming the stairs, scrubbing the bath tub, giving the dog a bath, dancing, standing on hardwood/concrete floors for long periods of time without proper shoe support, sitting up-right for long periods of time, lying down for long periods of time (unless a muscle relaxer or two is involved), crossing my legs, sitting “Indian-Style”, holding a blow-dryer….the list really could go on and on.

You might be asking yourself at this point, “Well what on earth can she do?” It took me an extended amount of time to figure that out for myself. I spent a good portion of my time hanging out in the Step 4 Lounge after I received my diagnosis. It’s actually been one of my favorite places to frequent on and off for the last fifteen to twenty years. Needless to say, Depression and I go way back. If we were to have a relationship status on Facebook, it would be “It’s Complicated”. If we were to have a song, it would probably be “I Miss You” by Blink 182. Just call us “Catherine and Heathcliff.”

I think I’ve made my point.

In the past, we would tango every once in a while about things from my childhood, some tango’s lasting longer than others. Ever since I had met Jeremy though, my "dances" with Depression were getting shorter in duration with longer periods of time in between. After Reality hit me though, I basically tried to adopt Big-D as my BFF. It took several friends’ encouragement and a TON of research for me to finally ease my way out of the Step 4 Lounge and start inching towards Step 5 Adventure-land FunPark.

But wait, I skipped Step 3! Yes, actually I did skip Step 3. Completely. Unfortunately (or fortunately?) with my existing knowledge of Fibro with my mom, I didn’t bother with the "if only's"; which is odd considering I was inducted into the Dweller’s Hall of Fame at the early age of six. However, I knew in this case, there wouldn’t be much use in dwelling. If only (haha) I had taken that approach from a holistic perspective, I probably could have skipped straight to the Step 5 FunPark!

Ah….Step 5 Adventure-land FunPark. Arguably one of the best places I have ever been in my life. It most definitely beats any park I ever visited as a child. The entire place is tailored completely for ME (says the only-child, with excitement)!!!!! As soon as I arrive, a good looking man that strikingly resembles Chris Hemsworth hands me a pair of glasses that conveniently flatter my features. When I put the glasses on, everything turns bright! There are rainbows and happy people all around who understand everything about Fibromyalgia. There are no stair cases to climb or uncomfortable chairs to sit in. Everything I touch becomes as light as a feather. All sodas are sweetened with Splenda, and fresh fruits and vegetables are available at every corner. If I start getting fatigued, a big fluffy bed appears out of nowhere to sweep me off my feet into a comfy, deep sleep. The best part about this place, though, is the attire. Only soft sweat pants and t-shirts with fuzzy socks and memory foam slippers are allowed to be worn. It IS the perfect pla….you aren’t seriously buying this crap are you?

Alright, let’s get real, shall we? Acceptance isn’t this perfect little place where suddenly everything becomes OK again. In fact, that place doesn’t exist and it never will. But, with the right tools and state of mind, you can get really close. And that’s what I’ve been doing.

Yes, I have finally accepted and determined that I have Fibromyalgia and I will continue living.

All together now, “I have Fibromyalgia, and I WILL continue living.”

Good.