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. 

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.

30 Things About My Illness You May Not Know

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

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

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

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

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

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

7. My favorite medical TV show is:
House

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?