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Friday, May 31, 2013

< 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.



Thursday, May 23, 2013

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. 

Monday, May 20, 2013

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!