enjoying life

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I am Flare Free!!! This and my Journey with Fibromyalgia the Last Few Weeks

I have to tell you… I have started this post and others many times. It is now May 16th and I am happy to say that I am flare free. Did you hear me??? FLARE FREE!!! Uh-uh. No. Don’t just read that sentence like it’s nothing. Read it again… Say it out loud with me. Wait a minute, Let me make it easier for you:

I   A M   F L A R E   F R E E !!!

I actually feel good. I can’t believe it. What the hell is going on? I’m not complaining or anything, but seriously, what the hell is going on? I like it! The timing is great! I need the energy to get through the next few weeks to get shit done. I hear you, PACE. I know. I am learning. Every day I am learning.

What I’m saying is… it can happen, I went from excruciating pain to feeling good. My medication is working. My exercise is working. It’s not magic. It’s not a miracle. It’s work, it’s what I learned from Physical Therapy, Counseling and research and most  important it’s about being consistent! Don’t give up. Each and every day I have to remind myself that it takes positivity and work to create change. Some days it takes more positivity than others… “This too shall pass” are the words I meditate by on those days. I deep breathe and on the in and out, I say those words and with each breath I get a little bit calmer.

This last 6 weeks has been a super-duper challenge for me. I thought I was going to lose the ability to walk and was starting to wonder about the use of my hands. Very scary. Noone can understand the fear this creates in the brain of a fibromite. I am feeling really blessed to be able to walk without my cane for an entire day.  I’m excited to be able to go to my son’s High School graduation in a couple weeks and not have to worry about being completely out of it. I can walk without everyone asking me what happened! This. is. awesome.

I understand tomorrow is not promised. I understand tomorrow I could wake up and not be able to walk. I have not lost my marbles (well that can be debated, I know! :)). Today is a great and awesome day. I am going to enjoy it. I am going to appreciate what I have. If tomorrow is completely different, I will deal with it when it comes. For now? I can walk and I can do what I want and I LOVE it!!

You all have a beautiful week and thank you so much for stopping by! Please leave a comment and let me know how you are doing.

Stay cool!

PS. I started and stopped the two posts below and never got around to posting them, I thought I’d include these posts with this one since it’s all a part of my journey…

Wait Do I Really Have Fibro?

It’s May 13th… April 9th is when it started. That is the day I woke up to the most horrible FLARE in a long time and I am praying tonight that it is finally coming to an end. Today was the first day that I woke up and felt human. I had one of those days, you know what I’m talking about — you wake up and you think “Wait, do I really have fibro… I’m feeling really good right now!”.

I felt so good I didn’t want to admit it to anyone. I didn’t want to say it out loud. I didn’t want to even whisper it. I did, however, say to myself “Today’s going to be a good day!” over and over in my head. I believe in the power of positive thinking.

You have to understand… stay with me for a minute.

  • For the last month I haven’t been able to stand up in the shower, wash my own hair and to get really personal, on most days I needed help to wash my own body.
  • I haven’t been able to walk without my cane. Walking with my cane, making it around the block would be an amazing feat!
  • I haven’t driven myself anywhere in so long, it’s amazing I even know how to drive anymore!
  • Just this week… I was in a wheelchair on Tuesday so I could participate at a conference with my colleagues at work. A wheelchair. Let me say that again… a wheelchair. Once more, a wheelchair, and let me say I was the first one to use it AND I borrowed it from a woman in her 90’s who is in WAY better shape than I.
  • Just yesterday, I was in tears I was in so much pain before going to the office.

All of a sudden today, I was able to walk without my cane and I was able to get through most of my restorative yoga class and it’s the end of the day and I now definitely feel the pain, but I’m still okay. This pain stuff is just crazy. So, all I’m sayin’ is… the FLARE better be gone! It visited for over a month, it’s definitely time to go!!

Things are about to get really crazy around here… and I mean crazy. PACE is going to either be my best friend or my enemy. I guess that’s the real definition of FRENEMY. Lord have mercy. Did I really just say that? Seriously. I need help. I mean mental help, I’m starting to lose it. Okay, so I already lost it… so that just means I don’t have to worry about losing “it”, right? If anyone finds my “it” anywhere… just send “it” back to me. I don’t know what you’d want my “it” for anyway, you can see by the way I operate, my “it” is not in very good condition!

See how easily I am distracted? FOCUS! Okay so! I have a lot coming up in these few weeks, I don’t have time for a FLARE.

Day 25 of My Very Intense Flare…

I will apologize now. I am not the most upbeat today. It’s Day 25 of a very intense flare. One of the most intense flares in, wow, SIX months! Just looking back through my posts, I thought it had been much longer, but it’s only been six months. I am now feeling just a little bit worse. I am going to allow myself to feel like shit for just this moment so I will hopefully feel better by the time I get done writing this post. It’s getting very difficult for me to keep it together minute to minute, hour to hour, day-to-day as this flare continues.

This flare is different from before… very different. For the first time in the history of my flares, I cannot get enough sleep. I am tired all the time. I mean, I am exhausted when I go to sleep, when I wake up, when I eat, when I work, when I breathe… just when. On Monday when I went to the dr., he got it. Exhaustion from pain. This time is different. I am in level 8-10 pain 24 hours a day, 7 days a week… every second of the day… and it makes me tired. It makes me frustrated and it’s starting to make me really angry. I am really, really, really trying not to let this shit take over my life.

Today was the day I hit the wall. If I had the strength I would have beat the shit out of the wall. I have taken a vacation and not been able to walk, I have been to a wedding and not been able to dance, I have been to the beach twice and not been able to walk to the ocean… for me? not walking to the ocean is actually a first… I should not whine, it’s a blessing that I can walk at all. It’s a blessing that I am able to go to the beach and I was invited to a wedding… a beautiful wedding with some great people and I got to watch my son dance all night, it was the best night ever! What the hell am I complaining about? I’m not complaining… I’m not.

I believe what I am trying to say is… I am tired. I am in a lot of pain and it is hard to deal with. Some days are harder than others and today is one of those hard days.

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Fibromites, Do You Wake Up Refreshed? Just Smile!

It is Saturday morning, 6:30am and I am sitting here wide awake. Ask me why… c’mon, ask. Come onnnnn…. Okay fine! Because it’s Saturday and I can actually sleep in (well not really, my daughter has a soccer game and I would have to get up in a bit anyway, but that’s not the point!). The point is, it’s Saturday and I don’t have to get up at this time and it’s like flipping backwards day as usual in my life and I am awake for no reason when I should be asleep and here I am wide awake! Whew! That was a long sentence! It is not as if I got enough sleep so I woke up feeling…. and I hate this word now –> REFRESHED (Wait a minute, I honestly have tried to take that word out of my vocab… so rewind, erase and replace hate with strongly dislike). How many fibromites actually feel “refreshed” when they wake up? (could you actually feel me doing the quote/unquote really strongly with my fingers that time? because I was, well as strong as these grip-less hands would let me). I mean, that is just not something I have felt in years. I wake up feeling like …. hmmmm … not sure I have thought about this … I wake up and think about how I slept, what hurts and will I be able to walk when I get out of bed and then I try and figure out what day it is. Now as my daughter says, “sharing is caring” so when y’all read that one, laugh with me, not at me… because, for example, today I woke up and really thought it was Thursday for some reason. I was pretty happy it was Saturday once I figured it out. Still laughing at me, I mean, with me? That’s alright, that’s why you visited my blog today, some pain relief. :)

So back to my point, most days I wake up feeling tired, half of those days along with tired foggy decides to join the party and maybe 15% of those days depression decides to crash the party and bring everyone down. So refreshed never really happens. I wonder what that’s like. You know when you are watching t.v. and that commercial comes on with the chick in her all white pajamas changing the all white sheets, and the light shining through the wall of glass behind her and she just looks all clean and refreshed? She is the anti-me. I ha… oh wait, really dislike her.

It’s really not all bad, it’s my reality. I’m just saying it’s Saturday and “hellllllooooooooo”, just thought I might sleep in today, but apparently I needed to get up and greet the world. Okay… seriously, I am smiling… I really am. I just realized it. I am crackin’ myself up as I write this… I have to take my own advice, right? Don’t take life too seriously… and THAT my friends is why I am up early. I needed to wake up and get an early start so I could smile and hopefully make you smile. If I didn’t get up early enough I would not have been able to write this before getting out of the house for my daughter’s game. That’s the start of my day… smiling. Awesome!

Hope you enjoyed my post. Thanks for stopping by and I hope you start your day with a smile!

Stay cool!

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My Mom and I Sport Matching Canes & I Want to Tattoo this on my Children!!

If you all go back into your memories and think about how you were raised, the moments that stick out into your mind… what do you remember that relates to your health today? What should you remember? What is that you want to communicate to your children that they may want to keep in mind as they grow older?

I went to lunch with my folks yesterday and one comment the manager of the restaurant said stuck in my mind… he said something like “I like how you two sport the matching canes!” From that comment, this post was born…

I remember, when my mom was my age, she certainly was not using a cane. She was in much better shape than I. When my grandmother was my mother’s age now, she certainly was not using a cane, she was in much better shape than my mother. It amazes me how the health of the three of us have deteriorated between the three generations. My grandmother was in really good shape until her 90’s. I don’t see that for myself. How is it that my grandmother lived to her late 90’s and both of my aunt’s have passed away already? They were not even into their 80’s! As I look into the past, this is what I  remember…

  • In my childhood years, my mother used to do all the cooking and cleaning, driving us around, in addition to all that, she was also very active in a non-profit group with my father.
  • In my high school years, I remember my mom working and running errands and helping us do whatever needed to get done… her life had to be frustrating dealing with 2 teenagers in the house! She was working at a medical clinic and still doing the cooking and cleaning. I was not paying much attention, I was a selfish teenager just paying attention to myself. I can somewhat appreciate my son’s attitude as he graduates from high school this year. I was a bit more oblivious than he is!
  • After I moved out, I noticed my mom took a lot more naps in the afternoon and tired a lot easier. It’s hard to work, take care of a house, and cook. I think she stopped cooking as much as her lack of energy didn’t allow her to do it all. Completely understandable.
  • As I started having children, my mom’s health really started to decline. She had to stop driving and her eyesight was not as good as it used to be so she was not able to enjoy the hobbies she once used to love. Now quality of life was so different that it once was. I can definitely relate to this.

I know through all of these years, there was a hysterectomy, hypoglycemia, diabetes, kidney transplant, plus a lot of stuff going on with her eyes… all the while my dad has had his own medical issues to deal with.

When I think about all this, I sit back and want to tatoo this on my children.

  1. Exercise, exercise, exercise!!!
  2. Please, eat a balanced diet… don’t go crazy, just eat good foods!!!
  3. GET EDUCATED!
  4. Never be too proud!!!
  5. Have fun, tomorrow is not promised, don’t take life or people too seriously!!!

Honestly, there have been many moments in my life where I have let things get to me and bring me down for WAYYYYY to long. I mean, really… REALLY? Was it worth it? HELL NO! Let’s be serious. I wasted that time just being angry.  So as I said… wasted time! Stop wasting time being angry and get over it!

I have definitely wasted moments in my life not getting educated vs. getting an education. That may sound strange, but instead of actively learning I would honestly sit in class and just not pay attention. If you have the opportunity to learn – pay attention and get educated!! I just had a really hard time, I believe I was depressed and I let myself fall further and further behind and never raised my hand up and said I needed help. I was too proud. Never be too proud. Especially if you have chronic pain. That is one thing I have learned in so many ways… over and over and over and over again!

Moral of the story? The time you have is valuable, use it wisely.

  • Live, love and laugh!
  • Don’t be too proud to ask for help so you can use your energy to have fun vs. washing the dishes or cleaning the house.
  • Get educated, we are the best advocates for chronic pain and fibromyalgia, let’s keep pushing the knowledge out there!

Does this make any sense? Let me know.

Thanks for stopping by my foggy brain blog. It’s been one hell of a painful week. I end this vacation wishing I had another week off, but accepting I don’t. Thanks for all the support!

Big HUGE thanks to Teia Hassey for my Sugar Doll award, that has totally made my vacation week!! Everyone check out her blog, it’s awesome!

Just Breathe – Life changing experiences with tibial torsion, ovarian cancer,vertigo,tinnitus,and Fibromyalgia. My quest for happiness.

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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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!

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Don’t let chronic pain steal your joy… My challenge to you: Enjoy life in 2010

I have started and stopped this blog at least fifteen times now. I have deleted four or five blogs completely, for this blog you are reading now I have erased sentences, paragraphs and entire pages before getting to the point of actually posting this one. I’m not sure what my problem is, I just have not been feeling the writing mojo in 2010… until now.

I cannot believe it is 2010… two-thousand-ten or twenty-ten or two-thousand AND ten or however the heck you want to say it! First, let’s get the awkwardness out of the way… YES I changed my look on my blog! Whew! I am one of those people that has to change things. I move the furniture (in the middle of the night I might add), I want to change the paint colors on the walls, I change my desk around, I always want something different! here again, easily distracted… now you know why! I love the feel of “brand new”. I thought, “new year” => “new look” to my blog. now that that is out of the way! Oh and before I forget… I also think I better start using my capital letters the right way. I am going to work for a “new” company soon, so I better think of it as a “new” job. I should start getting used to typing better in case I really really have to get a “NEW” job if you get my drift!!

So! There is a lot of newness going on in 2010. To be honest with you, and I feel I can be honest since you are all my virtual friends and family, I don’t like change. I like tradition. I like “brand new” added to tradition. I. don’t. like. change. Funny, I always thought I liked change, but now I realize I like “brand new” which is not the same thing as “change”. I will say this. I adapt well and I can be pretty darn flexible. I just fear the unknown. I said it. I don’t like change. I can move on now. It will take awhile to accept that, but at least I know.

I am still working on what I want my goals to be for 2010. The last couple years, in fact, the last three to five years have been tough ones for me. I have lost many loved ones and my health has not been great (understatement). I know one of the areas I really want to work on is just living above all the sadness and really getting into life and making 2010 all about living life at the fullest! I haven’t gardened in years, I haven’t done things just to have fun in a long time. I want to laugh and have fun and remember those people that have passed on in a fun/ loving way and be done being sad. I want to enjoy scrapbooking again. I want to enjoy working and enjoy living. I want to learn how to “LIVE” again. I don’t want fibromyalgia to take over my life. I don’t want chronic depression or any other medical condition to rule how I live. I understand this will not be easy, but I will take one day at a time and know that there will be days when things won’t go so good and on those days… doing something fun will be the most important part of my day!!

It’s interesting, in my Level II Chronic Pain program this past week, one of the homework assignments we received was to do something we enjoy every day… one of the people in the class said “everyday?” as she read the list that was provided as an example… we just seem to forget what it’s like to enjoy life when we are in pain.

Can you do something everyday that you enjoy? It can be something as simple as having coffee in the morning while you read the morning paper or playing games on facebook or something that requires more energy like going for a walk or seeing a movie… whatever you want! This is all about Y-O-U!

I have my homework that I’d like to make a habit instead of just homework… that’s my challenge to you!

Thanks for reading. Stay cool!