Chronic Pain

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Fibromyalgia, Vacation and What Was I Thinking?

Sooooo, I thought I’d go on a little vacation and relax. What the hell was I thinkin’?? I worked my ass off all last week in the office leading a staff meeting (remember that was my 70 hr work week) and then this week was the week I took vacation. Good idea? Ummmm, hell no! I am doing my best to relax, but I am in the most excruciating pain ever. Can y’all say F-L-A-R-E U-P??? Say it with me… FLARE UP!!

OMG! As my daughter says to me all the time as she rolls her eyes at me. This is really painful. For the first time ever, I really wish I had a wheelchair. Shit. Did I really just say that? Oh and get this, I actually said it out loud earlier today. OUT LOUD! I said it to my husband. “Do you think they rent wheelchairs?” I just wanted to suck it back in after I said it. While at the same time, I wished I had one. Lord have mercy… I mean it. WTF? I mean it. Please. Have Mercy.

So I am in the most beautiful place on earth. Okay, maybe not on earth… but as far as I’m concerned it is as far as I will be going on earth for a really really long time. So it’s the most beautiful place on my “earth”… Santa Barbara. We came to look at my son’s future college, UC Santa Barbara. Let me just say this… I am proud of what I have accomplished while we have been here. We arrived on Tuesday morning. Here’s the deal:

Tuesday, 4:15 I wake up… we leave about 5:00am (again OMG! it is really early!!), drop Tani off at my folks house and get the hell out of dodge, arriving at UCSB at 10:00. So, I start my day off with a long drive in the car. NEXT… a long walking tour of the campus. I thought I was going to die. My cane and I followed this happy sophomore guide as fast as I could go… at the end? Well, let’s just say I could barely move. Where was the car? Ummm on the other side of the flippin’ campus. My foggy brain was not functioning, my son was off somewhere else, my daughter was leading the way and that was interesting as we took the long way back to the car. Needless to say… ARGHHHHHHHHHHHHHHHHH!!!!!!!

What is the moral to this story? If you have a really long, hard week… and you KNOW it’s going to be a really long, hard week. How about planning your vacation away from that really long, hard week so that you have a chance of NOT having a flare up while on vacation??

In my case, I didn’t really have a choice since I had to plan my vacation to coincide with my kids’ spring break. I’m not letting it ruin my vacation though! I am still doing what I want, I’m just working through the pain.  I was hoping my flare up would be done before we started our trip, unfortunately it has progressively gotten worse… so I just keep doing my exercises and the stretches that I learned in my pain program and carry on! Y’all know how I am. Stay positive, and keep on going!

If we let this fibromyalgia/ chronic pain stop us… we would never do anything! I am in this beautiful place, the weather is sunny, blue skies, perfect temperature… I really couldn’t ask for more. I am blessed to be able to come here, so I am not complaining. I love it! What I am saying is, in the future… it’s all about timing.

It’s all about PACING ourselves. I just need to keep reminding myself of this. Pace, pace, pace, the number one challenge I need to conquer.

Well, once again, thanks for stopping by! Please let me know what you are thinking about!
Stay cool!

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Reach One, Teach One: This video on Fibromyalgia is Amazing!

I read a lot of information on chronic pain and specifically Fibromyalgia. I personally feel like I am pretty educated. I just finished going through an awesome 10-week Level II Chronic Pain program through Kaiser (which I highly recommend to anyone who has Kaiser, send me an email if you want more information on this).

The video in the link below is of Dr. Sean Mackey, Chief of the Pain Management Division from the Stanford University Medical Center, he gives a detailed presentation of Fibromyalgia/ Chronic Pain that is just amazing… I generally have the attention of a gnat, I watched this entire video… IN ONE SITTING! I kept wanting to look away, or put my laptop down and do something else, but I was so intrigued by the information I stayed glued to the screen. He provides the answers to:

  • What is Fibromyalgia?
  • What are the symptoms?
  • What are some of the treatment options?
  • What is pain?
  • How should fibromites/ chronic pain patients be treated?
  • Alternative therapies
  • Latest studies
An Update on Fibromyalgia

http://www.researchchannel.org/prog/displayevent.aspx?rID=28078&fID=345

Tip: If you watch directly from the site (and don’t download the video), you will get the video with closed captions which is really nice to follow along with Dr. Mackey as he speaks.

The date of the video is October, 2008

Running time: 1:14 (well worth the time!)

You will learn everything you need to know about FMS in a language that anyone can understand. He is positive and I felt almost uplifted watching this even though the information was sometimes difficult to hear. He knows his stuff!

Encourage your friends and family to check this out so they can better understand what you are going through.

Thanks for reading, I hope you find this helpful!

Stay cool!

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How Do You Recover?

How do you start your day? If it starts out good or bad, does that determine how the rest of your day will go? Do you have the ability to turn your bad day around if and when it turns sour?

I tell you… with chronic depression, it’s like climbing up Mt. Everest carrying a 100 lbs. of cement on my back to turn a bad day — to good. Some days it just doesn’t work out. Some days the depression just hangs around like the cloud of dirt around Pigpen. Some days I am able to turn it around.

Yes, I take medication. I take medication to help me manage my pain, my depression and to help me sleep. I remember what it was like without medication. I know I don’t want to go back to those days. I hate putting these pills into my body. Every time I have to refill my pill boxes, I hate it. It cause me to go down a bit, but I have to remember that in the end it helps me. I sleep better, It helps me walk, work, spend time with my family… it helps me be human.

I worked about 70 hours this past week. I had a colleague tell me on my fourth work day at our business dinner, when I finally gave in and used my cane, that I didn’t need to use my cane, that I had walked fine all day without it. Nice. It still kills me to have to use a cane, and it’s always nice to get comments like that on top of my own pride. By Friday I could barely stand up. A few hours into the day I just lost it and during the meeting started to tear up. Really nice. Nothing like being in so much pain and so exhausted you just can’t do anything but cry… while at work with your entire management team.

How do you recover on these days? I’m not sure I did on those days. Exhaustion is difficult to recover from without just laying down and going to sleep. It’s Sunday now and I have spent the last 48 hours since coming home from work on Friday basically in a complete fog. I have either been asleep or laying down only to get up to go watch my daughter’s soccer game and to take her to the store. To go watch her game was so fucking painful, I really had a hard time even watching. So five days of work, 2 days of sleep. Normally tomorrow I’d be going back to work, thankfully I am on spring break with the kids. This has been my schedule for the last few months.

So… again… how do you recover on these days?

  • You pray
  • You rest
  • You give yourself a break
  • You relax and take care of yourself
  • You smile
  • You laugh
  • You remember it’s just one minute, one hour, one day… you don’t look past right now

That’s what I need to do.

Take care of you.

Thank you for stopping by… please share with me how you recover.

Stay cool.

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I Close My Eyes…

I notice I close my eyes a lot these days…

When I am in physical pain.

I close my eyes.

When I am hurt emotionally.

I close my eyes.

When I am mad.

I close my eyes.

When I am sad.

I close my eyes.

When I am frustrated.

I close my eyes.

When I am tired… exhausted.

I close my eyes.

When I need to think.

I close my eyes.

When my heart is feeling scratched and torn.

I close my eyes.

When I feel disrespected and I am about to lose my mind.

I close my eyes.

When I am talking and I’m not being heard.

I close my eyes.

When I need to take a mental break.

I close my eyes.

I find myself thinking what it must feel like to be blind…. memorizing my surroundings and taking mental note of what I want to remember. Visualizing in my mind the environment I want to keep in my memory if I am not able to see.

What is this about? I have no idea. I have just noticed that more and more in the last six months, it is a physical response that I have started to use. It was not something intentional, but also not something I decided I didn’t like. I like it. I like that it makes me stop and take a moment to close the world out and take a break. It tells me… “don’t lose control…. just take a moment and get it together.” This life or any life is not easy. God did not put us on earth for “easy”, we are all here for different reasons. If we accept that and stop fighting it, then life becomes easi-“er”.

I believe I know why I am here. I am put in situations and I help out where I am needed. In the end I am definitely rewarded. God is good to me. As long as I look at the big picture and don’t just think about “ME”, I do well. This life is not about me.

It’s interesting, I got up this morning, to write about something completely different. God certainly does work in mysterious ways.

I hope you enjoyed this post, please leave your comments.

Stay cool and have a happy Easter!

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Turn Up the Music!

I can remember when I was a teenager blasting music as loud as I could to tune the world out. It worked then and it works now. If I turn the music up to just the right decibel I swear it makes everything in the world seem juuussstttt fine. I remember waiting until my parents would leave the house and turning the stereo up REALLY loud, closing my eyes and just laying on the floor or writing in my journal or chillaxin’…

These days I have to remember, I’m the parent now. I’m the one who’s supposed to be saying “TURN THAT MUSIC DOWN!!!”. Sometimes, like right now, I want to turn the music up so loud the roads shake and the cars jump up and down. I want this damn pain to go away. I am so very tired. I am so frustrated. This pain makes everything so much harder. I hate that people feel bad for me. I never know what to say when my friends ask how I’m doing… I mean, I know I’m not doing fine, but I don’t want to sound like Wendy Whiner so I say “I’m alright”.  Sometimes I just want to say “I feel like shit, I feel like I just got a ‘beat in’ initiation into a gang… the fibro gang. What a fucked up gang that would be. I feel like I’m black and blue all over. I feel like my bones are broken. You can’t see any of this on the outside. I can feel it though. This fibro shit is crazy. I gotta tell you… you gotta have faith in your God to get through this shit. Excuse my language. I’m a little out of control tonight. Just feel the need to vent a little.

It’s difficult to keep all the things in life balanced and working. Life. Marriage. Work. Family. Personal. Health. Throw these things up in the air… which one do you catch first and which ones get dropped? I tell you, I roll out of bed in the morning and start working and I probably work a good 10-12 hours a day these days. I am actually pretty darn focused. Would I actually “catch” work though or would it fall slowly to the floor… interesting question. Scary proposition. Is it possible to catch all of them? It is impossible to multi-task, so something has to give. One can only focus on one thing at a time. Given there’s only 24 hours in a day (now you understand why most of my posts go out after midnight!) if 10-12 are spent working, 5-6 are sleeping, there’s roughly 6 hours left to focus on everything else. Hmmmmmmm. I better take a look at my Maintenance Plan I came up with from my Level II Pain class. I definitely have a problem of “pacing” myself. I can’t seem to work just a “little” bit.

I think I better turn up the music and think about this for a while…

Thank you so much for reading and please leave me a note. I love to hear from you!

Stay cool!

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Nothing like a little ADHD to go with your morning coffee!

I don’t have enough change in my life so once again I decided to change the theme of my blog. There aren’t a whole lot of WordPress themes to choose from, which is probably a good thing for me since I like to change these types of things,  I am still obsessing about the look/feel of this blog. I am crazy woman. I am the person that decides to move the furniture… RIGHT NOW. I am the person who decides that I want to be organized and need a new planner… RIGHT NOW. I need to get organized, therefore, I need to figure out a new file system, which requires new files, which requires a trip to the store…  I need to find a way to track my actions, so I need a new binder or a new planner or a new system or a new spiral notebook or a new ARGHHHHHHHHHHHHHHHH!!!!!!!!!!! WAKE ME UP OUT OF THIS CRAZY ASS NIGHTMARE!!!!!!! MAKE IT STOP!!!!!! Yes indeedy, I have ADHD… I have told you this before. Nothing like a little ADHD to go with your morning coffee. Or how about a little ADHD to go with your morning review of actions… it goes a little something like this:

Me…. reading email, drinking coffee… getting my brain engaged and ready for the day.

My ADHD: “hmmmm so much to do, how are you going to figure out how to prioritize all this stuff… I mean where do you even start?  You should start by prioritizing! You should figure out where to start… You can’t start until you prioritize. You have to prioritize before you start!”

Me: “Don’t do it.”

My ADHD:  “What do you mean don’t do it! You KNOW if you prioritize you’ll be organized.”

Me: “Don’t do it. IT’s A TRAP!”

My ADHD: “Puh-lease. A trap? I wouldn’t do that to you. I am here to help. WE are a TEAM. You need to prioritize. How are you going to prioritize?”

Me:  “Shit how am I going to prioritize? I gotta figure out how I’m going to prioritize! I gotta get a system.”

My ADHD: (whispers) “WINNER!”

Me an hour later…  “SHIT! SHIT! SHIT! I did it again!!!! Oh man I gotta stop getting distracted and focus.”

I have a system for capturing my actions. I just have to keep using it and getting off-track and letting myself get  distracted. It’s just another way of bringing me down and creating pain.

Tonight changing the theme on my blog was a nice distraction after a very long and painful day. My work has been very challenging since transitioning to my new job. It’s difficult to work the long hours and manage the pain.  So after a long day, the time I took to look at the themes and find and edit one of my photos for the header and put a new picture up of Tani… well, it was worth it.

This is the thing… if I can do one pleasurable activity a day, my depression should stay manageable. That’s the hope anyway. I think it’s working for the most part. I have learned this in my pain class. If I can manage the depression, it’s just one more way of helping to manage my pain. Once again, there’s always a connection.

I can manage through the pain. For me, this is my life. In other words, if I accept this is my life, then I will continue to LIVE. I won’t let the pain take me away from living. If I wait until I feel good and there’s no pain to do anything… I may never be able to leave my house! It’s easier said than done… but we all work on this every day, right?

So this post is kind of all over the place, but sometimes it’s just like that! I can’t help how my brain works. I mean you just get to read this… I’m livin’ it 24/7! :) I started writing and I honestly thought I was going to write about something completely different and ended up, well… here.

I hope you enjoyed it. Thanks for reading! I hope you leave a comment, I really appreciate hearing from you!

Stay super cool!