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.

The Liebster Award

Hello all!

Today I received notification from a really awesome person, Kathryn H., that I've been nominated for a Liebster Award. (Go check out Kathryn H.'s blog! http://equigems.blogspot.co.uk/)

Part of accepting the nomination is to do the following:

Thank the person who nominated you and include a link back to their blog. (Please see above.)

List 11 random facts about yourself.

Answer the 11 questions given to you.

Create 11 questions for the bloggers you nominate.

Choose 11 bloggers with 200 or fewer followers to nominate and include links to their blogs.

Go to each blogger’s page and let them know you have nominated them.

So, here we go...

11 Random Things about Yours Truly

1. In High School I taught private piano, violin, and saxophone lessons and dance lessons.

2. I can sing in front of thousands, but I'm terrified to play piano in front of anyone, even though I've been doing both the same amount of time (22yrs).

3. I'm TERRIFIED of spiders.

4. I collect Pandas.

5. I'm 1/8 Cherokee Indian, but you'd never know it because I look more like Casper the Friendly Ghost.

6. I love bird art (mostly silhouettes and prints), but I'm scared to death of the actual animal.

7. My ears are extremely ticklish and I hate to have them touched.

8. Elephants are my second favorite animal, (Panda's being first).

9. I would be what you'd consider a Geek. I love video games, table top games, RPG's, cos-play, sci-fi...you get the idea.

10. My mom is my best friend.

11. I have the attention span of a...oh look a shiny! 

11 Questions given to me by Kathryn H. (http://equigems.blogspot.co.uk/)

1.          Why is your blog named what it is? 

I named my blog Fibro vs Life because that is what I feel my every day goal is. Me vs Fibromyalgia. This blog is journey of working through the pre-diagnosis up until now where I am in the "maintaining" the symptoms. (Heh.)

2.         What is the most exciting thing that’s ever happened to you?

I met the love of my life. AND I got to marry him. (Sorry, had to be mushy gushy for a second.)

3.         Do you have any animals in your life, if so who/what how many?

I have one dog named Lucy. She is a Chocolate Lab/Corgi mix. This dog is my heart and my child. I love her to pieces!!!

4.         If you were given 1 million pounds what would you do with it?

Well, 1 million pounds wouldn't do much for me here in the US... but if I had a million dollars (and wasn't singing the Bare Naked Ladies song)...props if you got the reference...I would pay off mine and my husband's debt, our family's debt, buy us a house, buy our parent's houses, then set up a trust fund for my children's education, then invest the rest for retirement.

5.         Do you have any hobbies?

I like to paint with acrylics, (although I'm not super awesome at it.) I also enjoy reading when I have the time. My most recent series is the Harry Dresden series by Jim Butcher. 

6.         What is your best ever holiday and is there anywhere you HAVE to visit one day?

The best vacation I've taken so far was the tour I took with my collegiate choir to Italy. It was such an amazing opportunity that I probably would never have gotten otherwise! My husband and I have several places on our list to visit, but one that is a MUST is Disney World. He's been there a million times, but I've yet to have a true Disney experience.

7.         Why do you write a blog and what keeps you going?

I write my blog in hopes of comforting others going through similar chronic illness issues, to educate those who have never heard of Fibromyalgia or may not understand how a chronic illness works, and I also use it as a therapeutic tool for myself. Life keeps me going. Things never stop happening, so there's always something to write about! 

8.         Do you have a Facebook page?

Yes! However, my Facebook page is set to Super-Private Mode. If you'd like to friend me though just leave me a comment and I'll be happy to add you!

9.         Where do you see yourself in 10 years time?

Let's see...in 10years I will be just about to turn 36. (Oy.) I hope to have one or two children, own a home of my own, be closer to my parents, and hopefully I will have started, if not finished my master's degree.

10.       Who is your favourite famous person and why?

This is a hard one...I have a different favorite famous person every other day. (Can I name a superhero? No? Ok.) How about Walt Disney. He created most of my childhood, so that's pretty awesome. But also if you've ever seen inspirational quotes by WD, he was an extremely intelligent, beautiful person. 

11.       If you like art share your favourite painting, or share your favourite song if more music orientated.

Since I'm in a choral mood tonight, I'll say Samuel Barber's vocal arrangement of Agnus Dei. It gave me chills every time I performed it, and it still gives me chills every time I listen to it. 

11 Questions for my Nominees to answer:

1. If you were a superhero, what powers would you have?

2. Do you have any animals, if so how many and what are their names?

3. What are your hobbies?

4. Who is the most influential person in your life?

5. Who/What inspired you to write your blog?

6. If you could visit anywhere in the world and money was no option, where would you go?

7. If you could go back in time and witness any historical event, which would you choose and why?

8. Which 5 celebrities/famous people (dead or alive) would you invite over for a dinner party?

9. Ninja's or Pirates, and why?

10. If you could go back and change any one decision in history, which would you choose?

11. What is your favorite movie?

My 11 Nominee's (I'm not sure how to see how many followers anyone has...)

1. http://www.childlessnothopeless.com/

2. http://crohnschronicles.blogspot.com/

3. http://chroniclesoffibro.blogspot.com/

4. http://jjongsma.blogspot.com/

5. http://ourlifewithalex.blogspot.com/

6. http://www.inflamed-and-untamed.com/

7. http://www.taminginsanity.com/

8. http://coisasdeartista.blogspot.com/

9. http://diaryofafostercat.blogspot.com/

10. http://www.midwesterngardener25.blogspot.com/

11. http://di-dad.blogspot.com/

And there you have it! Viola!!!!!

< 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. 

It's Been a While...

Hey there!

I know I've been MIA via Blogger for a while. My (almost) 6 month "sabbatical" has been necessary though. Here are some things that have happened since my last post:

• Tulane University offered me a permanent position in their Human Resources department after I temped there for 3 months. I accepted, of course :)

• Lucy, (our dog), had to have two small malignant tumors removed from her belly. She has since developed two more and we are trying to decide whether to do surgery again or not. (It costs a lot of money that we don't exactly have right now...)

• I totaled my car on a pot hole on my street. Yes, a pot hole. No, I wasn't going fast. Yes, New Orleans streets are that bad. No, the city is not going to reimburse me (unless I get in line with the thousands of other people who receive less than $100 a few years after their claim. Not worth the hassle.) The pot hole was unmarked and it was dark outside. It caught the front end of my car, cracked the center of the frame and smashed one of the corners to where it looked like "a smashed soda can" according to the mechanic. The airbag deployed. Of course this caused my already existing whiplash to flare, and I sustained chemical burns on my arm from the airbag. Overall, no big deal. It just set back my recovery/maintenance on my back problems. Oh and we were less than a year away from having the car paid off. Yay...

• We bought a new-ish car. We're SUPER happy with it! We bought a 2011 Hyundai Sonata. The person who had it before us hardly drove it at all. We bought it with 12k miles on it. The former owner also put ALL of the bells and whistles on it, so we lucked out there too!

• July 1st, I go back to school. I will be attending at Tulane (obviously). I am going to finish my Bachelor of Arts degree just to get it under my belt. Then I might go for my MBA...but we'll have to see when that time comes.

And that pretty much sums up the last 6 months as far as big events go. My pain has been up and down. I've also re-entered therapy, as highly suggested by my rheumatologist. She referred me to an awesome LCSW whose specialty is in Dialectical Behavioral Therapy (DBT). (I'll be doing a post specifically on DBT later to explain my personal experience with this therapeutic technique.) So I guess I can officially add Dr. Stavros to Baylee's Fibro Team. I've been going consistently for a few months now and it's most certainly helped me with day-to-day struggles and stressors. I don't always look forward to going, but I know it's helping. I've never been good at staying consistent with these things. You could call me a therapist-hopper I suppose. But, with the support of my hubby, I will continue to go in spite of the dread I experience before each appointment. Once I get there and after the appointment has concluded, I'm always glad I went.

Last, but most certainly not least, I'm going to church again. Jeremy and I were blessed to find a church just a few blocks from where we live. It's clear to me that this plan has been in place for a long time. We were attending off and on before Christmas, but I was having a problem staying consistent with going. (Are you seeing a pattern here?) In fact, this is the first time I've gone to church consistently since I lived at home in High School.  We've met some wonderful, supportive people who I consider to be family. Without a doubt, Bethel Missionary Baptist Church is a huge part of my Fibro Team now. 

So there's your update on the ongoing craziness in my life. I hope to be posting more frequently now that I'm more adjusted to my new routine. Thanks to those who've continued checking in on me!

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.