invisible disease

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A Simple Post: My Fibro Journal Template… Use It & Track Your Daily Progress… YES I SAID PROGRESS!!

Hi everyone!

I created this template based on the 10 week Level II Pain Program I took at Kaiser and I have used it every day for a month. It has helped me remember to take my meds, really understand my sleep (lack of sleep), how my pain goes up and down, when and how often I flare and… when I talk to my dr… I can actually speak factually (what a concept)!

Try it, tell me what you think… these are just pictures. I posted it a couple of weeks ago, but I thought if I showed you what the pages looked like, you would be more apt to try it out. :) You can download the template in my Awesome Resources tab.

If you are not tracking your progress… if you don’t use my template… create your own or buy one or do something! It’s important so you can see your PROGRESS!!!! Even if it’s small, you do progress. Even if it doesn’t feel like it… you are making progress. You will have bad days… but you will have GOOD days. Journaling forces you to see the GOOD!!

Okay, I’m off my soap box. :)

Thanks for reading and have a super cool and pain-free week-end!

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 2

MY FOGGY BRAIN: Daily Fibro Journal - Page 2

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I Am Enlightened… My Son is Graduating! I Can Do This, RIGHT?

Being a parent is so easy… When I was pregnant, I read all the books, I took in all the advice, I did EVERYTHING right… I was soooo prepared!! Man, I am the perfect parent!! Just call me and I will tell you all the answers. I am the leading advisor on all parenting issues.

Yeah, right!!! Ask my kids, they will tell you the real truth. My son is graduating from high school in a couple weeks and last night we had our “what are your plans for the summer conversation”. I am enlightened. I shouldn’t really call it a conversation. It was more of a one-way talk/defensive-response. I mean, I’m under no crazy assumptions here, I know I am not, let’s just say your Claire Huxtable/Mrs. Brady type of momma … but on the other hand I am also not your get-ready-for-primetime-Jerry-Springer-show momma either. I am smoothly on the side of “living-with-fibromyalgia-so-can’t-do-it-all-so-I-do-my-best-and-it’s-not-always-the-most” kind of mom. I am not sewing Halloween costumes or baking cookies or to be frank, doing laundry or making dinner or to really put it out there… cleaning the house or driving the children around. Are you still with me? Or did y’all quickly leave my post in disgust… that’s me, take me or leave me… I work full-time+, generally about 50-60 hours a week as a, let’s see my title this week is “Sales Operations Analyst”. I have two managers … I report to a Sr. Director of Global Operations and the VP of Sales at a hugemongous (yes I made that word up… and I like it!) corporation that is taking over the world one company at a time. I have worked full time since I was about 16. That’s 25+ years working full time, I’m just slightly tired sometimes. Until FMS hit me, I was definitely that type A personality. Now I am a type “a” personality… just give me the little “a”.

So, having said all that (remember… easily distracted)… I am enlightened. This is a difficult time for me. I want to stop the clock and just say “Wait a minute. I just want some you and me time to just chill. I know you are leaving, but I want to just hold on to you a little bit longer…” He, on the other hand, is ready to GO. I remember that time. I could not wait to get out of the house. I wanted to go, get out and not look back. This is a difficult conversation. Any words said between parent and child can be pretty hurtful.

Us. “We want you to get a job. We understand you are making money on your own, but we also want you to get some experience, have some structure, learn how to take direction within a management team, etc.”

Him: “ummmm, whatever. I don’t agree. I’d rather just hang out with my friends.

Us. “We know you are going out with your friends, we just need to say this so it’s been said… please make right choices about getting in the car with people who are driving under the influence”

Him: “I choose smart friends, why would they do that? I don’t appreciate you assuming they would do that.”

Us: “We just want to tell you our expectations for when you go to college, just on our mind…”

Him: “Why? Can’t you just tell me on our way when you drop me off in like three months, this makes no sense… I mean, why do you need to tell me now?”

Us: “You are graduating from school, you have a lot more time to contribute to the house, both inside and out. We would appreciate it if you would help out. These are not chores, these are things that need to be done, that we may ask you to do. You don’t have any chores that you do, so would ask that you help out a lot more until you leave.” (An alternative was given to pay instead of helping out…)

Him: “I’d rather pay than help.”

Anyway, I’m sure this is not drastically different than a lot of kids, but honestly. Selfishly, and I mean this, selfishly… life at work is so hard, why does life with him have to be so hard? He is so defensive and argumentative about everything that he disagrees with. He cannot discuss calmly, he just goes for the jugular. Aw well…

He was honest. He told us he’d rather spend his summers staying at the college than coming home… He said it’d be more fun staying at the beach with friends hangin’ out than coming home and getting nagged. Wow. That was enlightening. This kid has zero chores. I made a mistake somewhere not giving him chores and sticking to my guns on that one. Now any chore he is asked to do is an issue. On the other hand, this is also not so hard to understand. I would have felt the same way at his age. It’s is just hard to hear.

I am enlightened. Since he was a small child, he has been so stubborn. Very hard headed… to the point that we took him to counseling. I think I get it. Now. Just this moment. He is very serious about his stuff. Since he was a small child all the counselors have always said, “take away what’s important, whether that’s material or something like privacy, ie. remove the door from his room”. We have done that all his life. Now he pretty much hates us for taking that action. He KNOWs his stuff will get taken away, yet he will not give a shit. At the end of the day, he is pissed at us for all the shit we have taken away in his life. Still pissed. He remembers everything. So, why did he push it to the extreme? Why did we let things go so far? Life lessons. There is no damn “this is what you should do in this situation” reference book for each individual child.

In our children and godchild’s lifetimes, we have done our best as parents. We have made mistakes. We will continue to make mistakes. That is how life works. I know this, I accept this. It is painful for everyone involved. This is how we all grow.

I do know, my miracle child is smart, he is a genius to me, he is going to go exceedingly far in life. I am so proud of him. I love him. I trust he will make the right choices. That doesn’t mean I won’t worry, that’s just part of our DNA as parents, right?

Now begins the countdown… Lord have mercy. I can do this. He is ready. I will be too. He is a strong boy and when he walks out that door, he will be a b-b-b-….MAN! He’s been prepared. It takes a village and those he has been around the last 17 years have all given him the tools he has needed to become who he is. It’s up to him to take all of that and take the next step.

Y’all pray for me and give me your support… I already miss him!

Stay cool!

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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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whew! i’m still standing. or rather sitting. or am i passed out on the floor?? all i know is… i made it through the holidays and now… i’m getting ready for 2010!!

merry christmas!! i’m still standing. or rather sitting. or am i passed out on the floor? all i know is… i made it through!!

what a whirlwind holiday season this has been! most days i had no idea if i was coming or going. i was foggy brain multi-tasking which, trust me, was the scariest thing ever. i mean it. think of this… my family room had about 15 projects going on, you could not see the floor, the table tops, the chairs, the couches, it was absolute chaos in there… but for me? i was workin’ it. i had three 6-foot tables in that room, i swear when i wasn’t in there, there were little project angels helping me… (a girl can dream, right?) i have to really give it to my husband, he let me do my thang (that’s right THANG). he generally (and by generally i really mean always, can’t stand it, has no patience for it) hates clutter and if that room was not the ultimate, extreme definition of clutter, i don’t know what is… but he just soldiered on each day, for weeks, and let me work. i’m pretty sure he knew i would have lost my mind if he said something, but that, my friends, is support.

i gotta tell you, i had a lot going on before that big guy was comin’ down my chimney… i had:

  • eight 12×12 scrapbook calendars to make (only 3 of which were the same) so i was designing scrapbook pages for hours!,
  • 28 kids to buy for (thank goodness for amazon.com!!) – let me tell you those lightning deals on amazon saved my “you know what”,
  • one 12×12 album to scan and copy to create two smaller 8×8 albums (seriously can santa bring me a 12×12 scanner next year?? scanning a page 4 times is so not fun!! can you say 26 x 4? and honestly my husband did all the scanning, what a guy!),
  • two desk calendars (thankfully there’s snapfish where i went to create online) and
  • two poster collage calendars (again i love snapfish!)
  • christmas cards (last minute decision… snap! fish!) and
  • i helped my daughter make eight custom designed tshirts (what was i thinking…. i was thinking in October… that she needed to start, which is what i told her… told her in November… told her December 1… 2… 3… you get what i’m sayin’… her beautiful brother helped me in the middle of the night to get these and the calendars done)
  • in addition to her one 12×12 scrapbook calendar… (again, why do i encourage the start of all these projects? i love the feeling of frustration and stress all at the same time… it’s such a yummy feeling! and honestly (again) i didn’t really do anything but encourage/motivate/yell/yell/yell at her to get it done) but… her creations were awesome! i have to say it again… totally awesome!!!

and all this in the span of the three weeks before santa arrives… 80% of it the 5 days prior to… oh yeah, totally forgot…i also had:

  • the cookies to bake, which the kids did (thank goodness for auntie cheryl who faithfully comes every year to lead the troops while i quality check the end result)
  • the tree to decorate, which i did in the middle of the night one night after i just couldn’t take it anymore (the tree had been put up and the lights were on it, what was my excuse? don’t get me started… but i had to put my mom’s handmade ornaments on it.)
  • i scrapbooked an album as a birthday gift for a family member (i was really happy to have done this, this one made me feel really good)
  • i worked a little bit up until christmas eve, which i had meant to take off completely… because i was needed to do some things. it took more time than expected, but it was worth it.

moving on… i’m getting ready for 2010!!

now that christmas is over it’s that time of the year where everyone starts to make resolutions for the coming year and reviews the goals they did or did not achieve for the prior year. we do this as a family in my house. we set aside a day and scrapbook a page and each list our “10 most memorable moments” and “10 goals for the year” some of the goals are the same for each year, some are different – it’s not a time to be judged. my son is very good about listing smart achievable goals, he knows how to create achievable goals. i am going to learn from him this time. what a novel idea… an achievable goal! this is such a great skill he has at such a young age… he is very wise for a 17-year old. tomorrow is the day we will work on our lists and scrapbook together as a family. i hope for a drama-free day… i plan to just work at my desk with the family with tani by my side and get into my groove with positivity and God on my side… because that is how i plan to start 2010!

this will be a year of change for my family…

  • my son will graduate from high school. we will find out what his next path in life will be in the spring, i am going to be brave about this, but i already miss him. my best friend’s son is leaving for the air force in february… i miss him already even though i never see him as they live a state away. he was the first baby between the two of us bff’s so i feel as though he is leaving me too.
  • the company i have worked my entire adult life for, the last 24 years will be acquired by another company come the end of January. this will be a change like no other for me…
  • i start my chronic pain program in january, this is supposed to change everything for me as far as my pain. the pain team says they have seen people leave this program, literally, with renewed lives. i’m excited to see how i am doing as i progress through the program.

i am thinking about my goals for the coming year, i know all of you are as well. i am wishing all of you less pain in 2010 than you had in 2009 and continued sharing and support. we hold each other up in the good times and the bad and together we will continue to make each other stronger.

thank you so much for making me a stronger and better person despite having fibromyalgia, this community of fibromites/ chronic pain people seriously ROCK! nothing can hold us down!

thank you for reading and stay cool!

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tis the season… calling all fibromites! what’s your perfect christmas present?

today is december 7th and i can promise you, telling you i have a lot to do is the definition of an understatement. i am not going to be hard on myself. there’s no whip cracking (wait a minute! mayyyybeeeee that’s the sound i keep hearing… let me check, just give me onnnnnneeeeee second… nope, that’s definitely just the rain outside. whew! i got scared for a second there!), as i was saying i am on my own schedule. i put the pressure on myself every year.

i have this crazy idea that i want to make presents for people. i love love love to give people gifts. in my next life i’m coming back as santa. (to the one above, let me be specific… when i say i would like to come back as santa… i mean THE santa, not the homeless guy in nyc or any other person with that same name… i mean THE one and only the big guy that ‘makes the list and checks it twice, gonna find out whose naughty and nice’ please let us not do any funny play on words… thank you very much!) again, as i was saying, if i was a bazillionaire (this is a real word in my dictionary), i would just find ways to give away without involving all the politics… yet i digress.

in making all these gifts, every year, down to the wire… i always end up working around the clock. this is the first year i’m dealing with my pain levels being so crazy bad. this is the year my fibromyalgia decided to come and visit… and never go home (if you say it with that deep scary voice, it is much more effective and entertaining). last year was pretty bad, this year… let’s just say… prettier badder… or even prettierest badderrest!! okay shit… it just effing sucks but it’s christmas time and i’m trying not to say bad words and i just did and now i feel bad!!

so what was the point of all that anyway?

hmmmmmm my title says “tis the season… calling all fibromites! what’s your perfect christmas present?” what was i going to say… (the sound of my foot tapping does not help me remember oddly enough)… oh yeah! seriously… this is real time and i sadly did forget what i was writing… that was foggy brain at it’s best. you have just witnessed my foggy brain in action. whew! back to my blog.

what i want for christmas! geez i better type fast before i forget again… i want the perfect organization system for foggy brains. let me explain so you know what i mean:

  • something i can carry with me 24/7 in my purse
  • something i can write in and journal as i think (so i don’t forget!)
  • place to take down work notes while on calls or in meetings
  • calendar tickler to keep my work and personal key dates coming up
  • place to take down work and personal actions/ to-do’s
  • reference information that i need to keep either for work or personal
  • i would like to keep my work and personal separate

i have an iphone so i don’t need to keep contacts and i also have my calendar in my iphone for reminders… but i am a visual person i don’t remember unless i physically write things down to feel and see myself write it down… and also… if you have an app for that (hahahaha…. say it… say the commercial “i have an app for that!”) let me know, i’d love app suggestions for my iphone as well, i have tried GTD, OmniFocus, and i can’t remember what else…

if you have made something, i’d love to copy it… if you have thought of making something, i’m taking ideas…

i love stationary… i’m kind of crazy about paper, i think that’s why i love to scrapbook and love stationary stores… i have looked at tons of personal organizers (in weight.. really, i bet the total is probably 1/4 of a ton, what… does that seem like a lot or too little?). why the crazy look on your face?

this is my dream… to create the perfect organizer for people like me. an adhd foggy brained fibromyalgia chronically depressed insomniac scrapbooking crazed mom! if that is not the best description… man the next time i’m in a work meeting and someone says “why don’t we start by going around the room and introducing ourselves”, what do you think? should i start with that?

thanks for reading! stay super cool!

happy holidays!

ps. i thought i’d share some sites with you that may be useful to you fibromites/cfs peeps during the holidays:

pps. if you just need a serious laugh… (not for the politically correct folk), check out my most favorite place to go when i really need some relief from pain. she makes me laugh out loud every single time i read her blog:

ppps. if you actually read all the way to the bottom of this… i know that i could have matched my pictures to my blog a little better (like a diary or an organizer but i haven’t found the perfect one so that actually would not have made sense… hmmm), but i love my dog and any excuse to use her holiday pictures and i’ll take it… and really, it is my blog right?

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is this fibromyalgia stuff catchy??

contagiousi know fibromyalgia is not contagious… but you would have really thought it was in my house this past couple of weeks…

i gotta tell you, God works in interesting ways… the last few months, my husband must have really really wanted to know what it felt like to be me. i mean he must have really been saying to himself (in bold and underlined one hundred times if this web editor allowed me):

husband: “i wish i knew what it felt like to be in pain 24/7 and not be able to sleep”

[pretend insert me saying, to myself of course:  “what a complete idiot!“]

God’s response: “some wishes are really just too easy to pass up!”

… and so begins the best blog topic to come to mind!

my wonderful husband has a pinched nerve in his neck/ shoulder area… we think. aha! so begins the quest for the real diagnosis… sound familiar? anyone? anyone?

about a month ago, while starting the mower and pulling that damn string or whatever the hell you call it, he pulled or pinched something. this started in the shoulder and then moved up to his neck, down his arm and now his finger is numb. he’s been to the primary dr. who told him he had a pinched nerve and gave him prednisone and vicodine. he felt pretty good for a week while on the meds… well… after the week, he stops the meds and boom! he feels like crap because he stops the prednisone and now he’s feeling the pain of withdrawal and pain of … well… pain! we’ve all been there.

meanwhile… i have started my new meds and while still having sleep issues, when i actually do sleep, i sleep very hard. you can’t wake me up unless you turn the house upside down. i am scary asleep… like he tells me he’s watched t.v., kids coming in and out of the room, lights are on, crazy loud in the room and i am sleeping through all of it!

strangely enough he has become the light sleeper and the one who cannot sleep. he is the one getting up in the middle of the night because the dog and i are snoring in stereo on each side of him. he is in pain and now he’s getting up, leaving the room and sleeping on the couch. what the hell is going on here?

he has now become a walking zombie. shit. now there are two of us in the house. we can’t really afford this. i mean, i’m high maintenance as it is. my husband does everything in the house and he keeps it all together. he is everything to me. what do i do if my everything is broken? i’m already broken. we can’t both be broken… can we? this fibro shit is not cool. and i’ll be damned if all of a sudden it’s contagious… noone told me it was contagious! i gotta tell you, he even had a little bit of the foggy brain… i was getting a little scared! two of us in the house with foggy brain? the kids would be running the house… ummmmmm, halo3 24/7 in one room and texting, tv and facebooking in the other. we better get our shit together! thankfully his foggy brain only lasted about 8 hours. enough time for him to get a complete understanding of what it felt like to be me.

start of week 2 of my ever complaining, can’t take the pain, husband… (did i just say that?)… and he is in some real pain (truth be told, he is in real pain, i do know and most importantly believe that). he calls the dr. and they tell him to come in for a follow-up appt. he told his dr. that he shouldn’t be in this much pain (good for him for putting his foot down with his dr!) and the dr. gave a referral for him to see a rheumatologist and to come back to see him to get a lidocaine shot which will take the pain away…. however when he sees the rheumatologist, she tells him his dr. should not have given him prednisone and that the source of the pain was in his neck not shoulder, blah blah blah… end of the day… he still doesn’t have a diagnosis. and those damn shots didn’t help a bit. can we fibro people relate? hell yeah!

he says to me… “i understand how you feel. i know this is small in comparison to what you feel, if God wanted me to know… i got the point! i can’t believe you have to go through this everyday… ”

i never would have wished it on him or anyone else. it definitely makes a difference that he understands, but i don’t want him to feel pain. emotional or physical.

i find it interesting that this has occurred. anyone else have this happen in their relationship?

thanks for reading! stay cool.