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. 

Update

Hello All!

Sorry I've been MIA for the past week. One of the many circumstances of picking and choosing where to spend my energy... my other responsibilities won. But I'm back with you now! This past week was insane. I'm starting to realize I may have, once again, over-extended myself by committing to too much. BUT, I can fix it. I think.

Currently I'm committed to working on 3 websites, in addition to this blog. Luckily all of that can be done while sitting at a computer, which isn't too physically demanding. It's just time consuming and brain draining at times. I know all my fellow bloggers can most certainly relate. In addition, to the  3 websites, Joy and I are currently planning Faith, Hope, and Fibro's 3yr Anniversary in February, we have our weekly group meetings, I'm planning (and executing) Christmas shopping for 26 people, wrapping said gifts for 26 people, then there is rehearsal on Wednesday nights at church for Sunday singing, Bible Study after rehearsal, Church on Sunday, and I'm back to working 40hrs a week M-F.

Yes. I'm insane. However, I'm not complaining about any of it, please don't misunderstand. I am HAPPY to be involved with such wonderful people and events. And I am EXTREMELY thankful for my job. In fact, this job has been such a HUGE blessing to Jeremy and I. 6 months ago, I was basically bed-ridden and on the verge of losing my job. This is a HUGE improvement. The most important thing for me is to find the "happy medium," though. So far, I'm doing much better at pacing myself. Some may see it as procrastination, (which I also do), but in this case I'm just making sure I'm taking care of myself a midst all of the responsibility. There's no need for me to land myself in a mess of pain, which will inevitably turn into resentment, during the holidays.

Historically speaking, Christmas has been a really hard time for me. This year is my first Christmas as Mrs. Baylee Bass, and I am doing EVERYTHING I can to make sure it's one of the best Christmas' in my life in spite of the fact that not all circumstances are ideal. 

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.

Closure...?

I finally have my diagnosis! This is good, right? Now I can make a plan, move forward and everything will be hunky-dory. 

False. 

For the most part, everything stayed the same. Jeremy still had to help me out of bed in the morning, I still had to take “ice pack breaks” at work, and I was still surviving off of caffeine highs from energy drinks around the clock. The only thing different was the added cocktail of prescription meds throughout the day while my co-workers stood by and joked about me being a pill-popper. 

I’m a pill-popper. Awesome. 

From my managers' views, I should be getting better. Sickness goes just like this: 

1. Get sick. 
2. Go to doctor. 
3. Get medicine. 
4. Get better. 
5. Viola! No more problems. 

Right. And I’m freaking Tinkerbell. 

I tried sitting down with a few of my managers to explain how Fibromyalgia works and that some days I’ll look and act normal, and other days, (most days), I’m going to hurt and need help. I tried to explain how my doctor and I are still adjusting my medications to find the right combination to give me the up-most relief I can obtain. I tried to explain to them that I was doing the best I could, that I still liked my job and I still wanted to work there. 

Yes, I was accused of not caring about my job. MY JOB!!!! The one consistent thing I’ve had since I was fourteen-years-old, and the one thing that guaranteed I would have a place to live and a car to drive. Seriously?!!?

But alas, if I didn’t have a smile on my face and a pole stuck up my you-know-what like a stick-puppet, I clearly didn’t care. Honestly, this was the first time in my life I was starting to put my health and wellness (pardon the official wordage) ahead of everything else. So why on earth was it making things worse?!

My “considerate” GM said, “You need to take care of yourself. But you need to be here, too. We have a business to run and customers to serve. So if that means you need to wake up a few hours earlier to have time to stretch and get rid of the stiffness, then that’s what you need to do.” 

I'm going to pause for a moment to let my fellow chronic peeps get their cursing fit out of the way.



<PAUSE>




Now, for those of you at home who are still learning about how this whole chronic illness thing works, I’ll lay it out for you: 


 chron•ic [kron-ik] adjective 

1. constant; habitual; inveterate: a chronic liar. 
2. continuing a long time or recurring frequently: a chronic state of civil war. 
3. having long had a disease, habit, weakness, or the like: a chronic invalid. 
4. (of a disease) having long duration ( opposed to acute). 


There. That’s better. 

Needless to say, my management didn’t get it, and they weren’t willing to TRY like I was TRYING to help them understand. The stiffness doesn’t go away. The pain doesn’t just go away. Waking up earlier makes it worse because sleep is one of the only things that help me feel better. I can’t just “walk it off” like some athlete with a charlie horse. This pain is here to stay and it really has no consideration for the customers I have to serve. Now, I understand there is a business to run. I didn't spend the last four-and-a-half years of my life whistling Yankee Doodle and staring off into space. However, there are also policies and procedures for people who have health issues that aren't necessarily planned. (Are any health issues really "planned"?) I asked to work shorter shifts until I was able to get my diagnosis. The response I received from local HR was, "Maybe this isn't the job for you." 

SERIOUSLY!?!?! Is THAT why you put me in the position I was in? Yes, please, make me a leader in your building and responsible for financial results. I'll work 40-50hr weeks and come in on my days off to help YOU. But when I need help, "this isn't the job for me." 

/end rant

The day of my diagnosis, my rheumatologist told me I needed to find a new job. I laughed at her then. I wasn't laughing anymore. Instead, I was devastated. This company, that I’d put almost five years of my life into, was now seemingly betraying me. It was now clear that I HAD to find a new job. By this point though, it wasn’t my choice or on my own time. Shortly after my “just walk it off” conversation, I found out my supervisor position was being eliminated soon due to the massive Corporate Restructure the company was going through. Thanks to the awesome economy, I soon would not matter anymore. Here Jeremy and I are, about to be married in less than three months, and I’m going to be unemployed for the first time in ten years. I had the option to re-apply for other positions, but based on how I was currently being treated I knew this was my time to walk away with my pride (and anger) still intact. Conveniently enough, my vacation was coming up the week after I got the news of my elimination. I was supposed to be going home to have a relaxing and fun week planning my wedding with mom. I don't know that it was necessarily relaxing, but I did manage to have a fun week and get most of the wedding planning done.  I never went back to work, even though I was guaranteed a job for another three weeks. Instead, I elected to drained my vacation, sick time, and personal time to keep an income. Once I returned to New Orleans, I slept a lot, and I drank even more. I’d call it your good old fashioned pity party with a side of self-destruction. 

Yeah, I know. Go me.  

My next rheumatology appointment was approximately a month after I was laid off. I still was not improving pain-wise. We changed a few more of my medications, including my anti-depressant. For the next two weeks, all I can say is, I don’t know how on earth Jeremy lived. Seriously, it was bad. My mood swings were off the charts! One minute I’d be freaking out about something so small, the next I’d be crying because I was so sorry for being crazy, shortly followed by zombie mode where I'd just stare off into space. If I was interrupted from staring off into space, the cycle would repeat. I'm going to say that with the grace of God and patience of Buddha, Jeremy managed to keep his cool and never once came back at me crazy like I was coming at him. Needless to say, all of the craziness was shortly followed by another adjustment to my medication, and another…well, you get the idea. Finally we got it leveled out and I stopped re-enacting scenes from "Psycho Fiancée Part III."

In between the sleeping, drinking, and watching lots of Ellen Degenerous, I was managing to put in ten to fifteen job applications per day. I wasn’t eating much. (Gotta fit into that wedding dress!) I didn’t hear back from a single application I put in. Apparently, my previous company didn’t hold as much weight on a resume as I thought it did. What was left of my ego/self-confidence was officially crushed. 

Had the last four-and-a-half years of my life been a total waste?





They say when you’re diagnosed with a life changing illness, you go through the same, or similar, five stages of loss or grief: 

1. Denial and Isolation 
2. Anger 
3. Bargaining (if only we had…) 
4. Depression 
5. Acceptance 

I can definitely see the similarities. Technically it is the death of the life I once knew. By this time I was smack dab in the middle of Step 1 and well on my way to Step 2, my forte. Somehow, I imagined the “closure” portion being much more......closure-like?

The Diagnosis

The day of my rheumatology appointment finally arrived. As "luck" would have it, my parents had previously scheduled their vacation to New Orleans to be the same week as my appointment. Once I got checked in at the hospital, the four of us sat in the waiting room. Dad and Jeremy played Angry Birds on the iPads, and mom and I just sat there. Waiting.

 Finally my name was called, and Jeremy, my mom, and I rose from our chairs to go back to meet my new doctor. Immediately the nice nurse with the braces made a "aww poor baby" face and said, "Sorry, only one person can come back with you."

I elected to have my mother come with me. I knew I was already nervous and scatter brained, so hopefully my mom would remember to ask all of the things I would inevitably forget. After being weighed (ugh) and getting my temperature taken, we got settled into the examination room. The nice nurse with the braces handed me an ugly hospital gown to change into. 

          "Everything but your underwear, hun. Here's an extra one to put around your backside."

How thoughtful.

I changed into the dreadful garments and sat, fumbling around with the two-page list I'd written the night before of things I wanted to mention. I kept thinking to myself that I was going to look like an insane hypochondriac when I started rattling them off. But oh well, this is what I waited eight weeks for. Go big or go home, right?

We waited a short time in awkward silence, my nerves vibrating the entire time. My mom kept patting my knee and saying, "Just take a deep breath. It's going to be fine."

Finally, Dr. Collins came in. She had a kind smile and a soft hand shake. After a few routine questions, I brought up my list. To my surprise, she acted very pleased that I made it. 

Maybe I'm not a hypochondriac after all? 

After shakily rambling off everything on the list, Dr. Collins interjecting here and there, she asked me to sit on the examination table. Carefully, she examined my entire body. She felt each of my fingers, joint by joint, moving to my wrists, *ouch*, up my forearms and squeezing my elbow a bit, *ouch*. There weren’t many places she touched that didn’t hurt. Once she finished the examination of my back and legs, she let me get dressed. 

            

         “Based on your test results and physical examination, I’m going to definitely say you have Fibromyalgia,” Dr. Collins said matter-of-factly. 

What? I’m twenty-five. This is not supposed to be happening to me. I’ve always joked with my friends that I had the body of a 90-year-old woman, but I didn’t mean it. I take it back. Is this my payback for being an ornery kid when my mom was suffering?

X-rays of my hips were ordered to make sure I didn’t inherit my biological father’s arthritic cartilage. Then, a different nice nurse lady drew six vials of blood to test for every auto-immune disease and deficiency in the book. Finally we were allowed to go. This time, I left the doctor with three prescriptions in hand. I finally had my answer. I was supposed to feel better right? Now I knew why I hurt. I was supposed to feel closure, have a new outlook, and make a new plan for how my life would be from now on. I now had a name for it. A label. I am labeled. Fibromyalgia. That damned F-word again.

As soon as we got in the car, I text my best friend. I wasn't really in the mood to be consoled. Other than my mother, my best friend Maggie would understand it better than anyone else. She too lives with an invisible, chronic disease. She’s strong and inspiring. She wouldn't pity me and make me feel like I’d just been diagnosed with a terminable illness. I had my brave face on and I was accepting the information like it was the score of a football game I had no interest in. 

“Just got done with the rheumatologist. She said Fibromyalgia,” I said shortly.

Almost immediately she text back.

           

          “That sucks, dude. I’m sorry. You ok?”

Not the response I was expecting. My brain was already in “no big deal” mode. Everything was cool. This piece of information was as important as the brand of cereal I ate this morning for breakfast. It didn’t even warrant a second thought, until she asked if I was ok. Maggie has a few ways of showing emotion: activism, dance, good old-fashioned soapbox ranting, and every once in a while, she gets serious. This was serious. It was exactly then that I realized my life was never going to be the same. But I kept my brave face on, and off we went to do tourist-y things and have fun. We were on vacation, after all.

The Breakdown

For the most part, I’ve always experienced some sort of pain in my body. I didn't realize everyone else didn't experience the same thing. I actually thought it was normal. So when the pain duration and intensity began increasing, I tried my best to ignore it and write it off as “the usual” pain in my…well, you pick, it probably hurt. I talked to my mom about it and she chalked it up to my lack of nutrition and rest. I wasn’t treating my body right, so it wasn’t treating me very well in return. From there I tried the diet change. I stayed out less and went to bed earlier. It helped a little, but not enough for me to want to keep up the good habits. 

The turning point for me was when the pain started radiating in my joints. My hands, wrists, elbows, shoulders…places I had never hurt before were beginning to hurt: no, ache. I felt like the last fragile petal of a rose, ready to fall from the stem. Pain medicine didn’t help; sleeping didn’t help (unless it was for more than fifteen hours). It didn’t matter what I did, I hurt everywhere. Adding that in with being on my feet eight plus hours a day in a high stress environment, it finally hit me. I am no longer in control. I could no longer ignore the pain and pretend like it wasn’t there. There might as well have been a big, huge rainbow sign saying “PAY ATTENTION TO ME, OR ELSE!!!” Go ahead and add on a big smiley face too, just for spite. So, I finally broke down and made an appointment with a Primary Care Physician. I wanted an answer. Go to the doctor, get an answer. Easy-peasy. 

False.

After the appointment, I left frustrated, discouraged, and prescription in hand. The doctor continuously cut me off when I tried explaining the pain. She asked questions I didn't know the answer to and then treated me like I was a stupid inconvenience for not being able to answer within five seconds. Needless to say, I got no answer. 

          “Call back in a month if you’re still feeling pain and I’ll refer you to a rheumatologist,” the doctor with terrible bedside manner said.

Ha. I’m always in pain; can we just skip the formalities and go straight to the next step? No. Of course not. So I spend another month taking a prescription three times a day that doesn’t work. In fact, it tears my stomach up. On top of that I’m unable to work a full eight hour shift. My attendance at work has suffered ridiculously due to having trouble even getting out of bed most days. My husband, then fiancé, has to physically pull me up from the bed and hold me until I steady. Only then do I dare walk without assistance to begin my morning regiment: a regiment that used to take a full hour consisting of a shower, blow drying my hair, straightening my hair, and make-up application. Now I do the bare minimum. 

I wash my hair; pull it back in a wet pony tail, then put on a headband to hold back the fly-aways. I find the cleanest sports bra in my drawer; real bras are not an option. The straps cut in and feel like a bruise being taunted by a four year old: 

“*Poke* Does that hurt? *Poke* Does that hurt?” 

Finally I look for the softest t-shirt I can find to put under my uncomfortable polo. Add the dreaded khakis and belt, and the Reeboks that save my feet, and Viola! I’m ready for the day.  I’m not much to look at, but luckily I don’t need to impress anyone. I’ve got my hubby and he loves me anyway.

I counted down the days until I could call my lousy Primary Care Physician and ask for the rheumatology referral. She said the Rheumatologist's office would call me to make the appointment. 

Oh yay, more "hurry up and wait." 

Finally, one day at work I’m laying on an ice pack on the couch in the break room, as I often did on my lunch break. My General Manager is sitting on the couch adjacent to mine, shoving french fries and a burger down his throat. Gross. My phone rings and it’s finally the rheumatologist calling to set my appointment up. 

            “We can get you in on May 15^th, Ms. Weatherford.”

I hate it when they use my last name, whoa what? May 15^th?

“May 15^th…that’s eight weeks from now. I can’t keep missing work. The medication I’m on right now isn’t working and I’m hardly functioning. Can’t you get me in any earlier?” By now my GM is eaves-dropping and not doing a good job at hiding it.

         

              “No ma’am. This is the earliest appointment we have available.”

“Ok, then I guess I’ll take it,” I said with defeat.

I end the call, basically devastated. How on earth am I going to make it another two months? I’ll be fired by then. I look over at my GM, who is now back to shoving fries into his mouth and clearly avoiding any eye contact or conversation. I decide to tell him about the appointment anyway, hoping that he will find some kindness in his heart and have lenience with me. 

Stupid. 

The cycle is rather vicious in the corporate world. If you’re unable to work your normal hours, you must request a Medical Leave of Absence. In order to request an MLA, you must have a diagnosis from a doctor. To have a diagnosis, you have to actually be able to SEE a doctor. All I could do was literally wait it out and hope to dear God I wouldn’t be terminated before I could see the rheumatologist. If I were terminated, not only would I be jobless, I wouldn’t have the insurance to cover seeing the rheumatologist in the first place! 

May 15th couldn't come soon enough.

Back in the Day

I’m sixteen and little do I know it, I am in the best physical shape I will ever be in. I go to early morning marching band practice at 6:30am and carry an eight pound instrument around my neck for two hours. Then I attend school, sitting at a desk for the majority of seven hours, followed by a drive to the dance studio and being on my feet, (or on the floor) for another five to seven hours. Somewhere in there is a break to slam down Taco Bell or Burger King, all before getting to go home just to sit at my desk some more and do homework until midnight. Sleep for five to six hours, rinse and repeat. 

Now, don't be fooled. I didn't do all of this with ease. I was never, and will never be considered "normal," if such a thing even exists. (Which it doesn't. But that's for another time and a different soap box.) I think my body has always been a little different compared to other females my age. As a child I was never particularly athletic, which is not completely unusual. But I started having back and muscle problems at the young age of ten and began seeing my mother’s chiropractor. The muscles in my hamstrings have always been “wound tight," which caused me to have to work much harder at stretching and flexibility in dance. The tightness, paired with my back spasms and alignment issues, also made recovery time from dance or other exercise much longer than most my age. My knees began giving me incessant issues around the age of fifteen. I had always had what my doctors thought were growing pains, but when I started dance it worsened quickly. Lucky me, I inherited my biological father’s Osgood Schlatters. This is when the tendons do not connect completely to the bone in your knee, usually due to a growth spurt in an active adolescent. Usually kids grow out of it, but in my blood line, it sticks around forever. Yay. Once I was diagnosed with this, I was told to quit any running, jumping, squatting, and anything that would cause acute knee impact, or I’d have to have knee replacements before I was thirty. Fifteen-year-old Me was not ready to give up what seemed like everything that was important and made me happy. Especially since thirty was so far away.

Naivety at its best, my friends.

Most people look back and joke about how good they looked “back in the day”. I’ll admit, I did look what I would personally consider "my best" back then, at 5’5” and 130lbs. Nearly ten years later though, I’m not looking back and thinking about how good I looked, I’m looking and longing for how much I was able to do. Thirty isn't that far away anymore... *shudder*

As a child, I never understood why my mother had to budget her energy, picking and choosing each little thing she would or would not do. She tried to explain to me that she had "Fibromyalgia" and it made her really tired sometimes. At the age of seven, I didn't understand it, nor was I interested. It was just a big F-word I couldn't pronounce. It frustrated me that naps and resting came before activities and fun most days. Sometimes I would get so bored having to play by myself, that I would “accidentally” be loud just to see if I could wake her up so she would play with me. If I knew then what I know now, I never would have made a peep.

I’m sorry, Mom. I get it now.