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.

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!

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!

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!

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!

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.