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.

You are responsible for your happiness and your health

I had a breakthrough today… I believe that’s what it’s called. It’s personal so I won’t share it with all of you, but I felt I needed to just put it out there. Why say it at all? It was a big day for me, I wanted to mark the day as a historic moment in time. March 2nd, 2010. Done.

This life is a trip. No matter what happens good or bad, the sun still comes up in the morning and goes down at night… and let’s be honest NOONE wants that to change, right? Drama happens in everyone’s “world”, but do you ever stop and look around? Do you ever really stop and just take a good look around? I, personally, can’t take my life too seriously. I would be a real basket case if I did. I used to take my life too seriously and trust me… ALL I THOUGHT ABOUT WAS TRAGEDY.  (I bet you wish you were my friend in those days!) I was Ms. Negative about everything. I try really hard to think positive about things. I may not get it right all the time, but I do try.

Look around these days… earthquake in Haiti, earthquake in Chile, homeless people everywhere you look, you must know countless people looking for jobs, friends who have lost their spouses/children/parents… these are rough times people!! Why do you think we have chronic pain?? It is not a coincidence!!

You need to look at your life and figure out if there is a link between how you live your life and your pain.

  • Do you hang out with positive or negative people?
  • Do you have a positive or negative outlook on life?
  • Do you believe you will get better?
  • Do you believe you can be happy?

You are responsible for your happiness and your health. You have to make life choices toward happiness and good health. I have to do the same. Trust me, it’s not easy. There are days I prefer to stick my head in the sand and stay in the dark… but those are the days I need my husband to push me to get up and come outside and play.

What I’m trying to say is… your attitude about life plays a big role on how you feel and your pain level. We have so much pain already, anything that will reduce our pain … well … it helps, right?

Thanks for reading! Look forward to your comments… stay cool!

should i call this a fibromyalgia “flare down”? whatever it is… i like it!

i have been feeling really good the last six days. six days of relatively average, level 4-5 pain days. thanksgiving day was the first day i felt really good. friday i spent the day scrapbooking and i felt really good. saturday was up and down… sunday was just okay, i had some serious foot problems but thankfully my husband was home to help me through it. monday is usually the day that all hell breaks loose in my body so i was pretty worried…. i waited and waited and let me tell you. i made it! it was a good day. in fact, it was a really good day, all things considered. i had a clear head yesterday and my pain level was about a 5. i have not had a day with a pain level below 7 in many months. did you read that?? i said months! and a clear head? it felt like i went to the store and exchanged myself for someone new! what the hell is going on?

do i call this great thing a “flare down“??

today… well today was a big day for me. for all you fibromites out there, you can relate to this… i took a shower this morning and i still had energy after. i had to slow it down a bit (i got a little too happy and forgot that i actually HAD fibromyalgia for a second and completely overdid it) but i kept going. i got in my car and drove for the first time in many, many months. i drove up to the san francisco airport to pick up my boss and back down to santa clara for a meeting… i was in the office all afternoon and then out for dinner with the staff. this was a big deal for me. i have not been this active and driving since… well i honestly can’t remember! even better, i had a clear head all day… again!  again i say… what the hell is going on?

do i call this great thing a “flare down“??

at about 8:15 tonight while sitting at the dinner table… i started to feel the nudges and the tension and the bruised feeling and i thought to myself… “go away!… i am feeling good! i am feeling good!… noooooooooooooo!!… not fair!!!!!!!!!!” but i can feel the pain coming. so, i quickly decided to call it a night and come home.

now that i’m home, i can feel my elbows and knees tightening up and hurting and i’m getting pissed off. i need to do some self talk. i can feel my fingers starting to hurt as i type, my head is hurting and all i can think is “eff this shit! i am going to feel good when i get up tomorrow! nothing can stop me!”.

so did i have a “flare down”?? did i have six great average level 4-5 pain days for no reason at all?? well when i think about it … all the nights were pretty painful, the meds helped me sleep through it. i wake up and go back to sleep because of the meds… so… i’m going to think like this for right now:

  • i am having some really great days right now.
  • my nights are painful, but my meds are doing the job and helping me get some rest and when i wake up i go back to sleep so, for now, my insomnia is under control. this is great news!!
  • i probably overdid it today which is why i’m experiencing pain right now.
  • tomorrow is going to be a great day.
  • i may not be where i want to be… but thank God i’m not where i used to be!
  • i have the courage to change what i can and i will accept what i cannot… it is what it is…

my formula for getting here to my “great days”:

  • a whole lot of prayer
  • listening to my teachings by joyce meyer and pastor paul
  • my physical therapy and following through with it at home
  • a whole lot of prayer
  • the support from my family and friends
  • the support from the fibro social networking community
  • a whole lot of prayer

if  i can do this… so can you!

what do you think? “flare down”?? fluke??

thanks for reading! stay cool!