depression

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Fibromyalgia and Doing “IT ALL”… What Do You Think?

Okay… here’s the thing. I’m just going to say it. I don’t get how people with chronic pain manage to do “IT ALL”. I am sitting in the kitchen that I made a mess; because I don’t want to sit at the desk that I left a mess; because I don’t want to sit in my bedroom that I left a mess. Honestly, there are not that many rooms left in the house. My son’s room smells like something or God forbid someone died in. My daughter has friends jumping around, hopefully not breaking the furniture in her room, and it is extremely loud in there so I wouldn’t be able to concentrate. My one sanctuary room, “the living room” in a very deep booming voice), I kind of have not allowed myself to go in so I don’t ruin it… you know the room I’m talking about. When you were growing up, it was the room that had the plastic covered furniture in it. The room no one was allowed to actually enjoy themselves in. Only grown ups were allowed in there, and only on special occasions. Sooooooo, when I grow up, I will let myself go in there! Until then, it’s just for special occasions… and I haven’t yet forced the plastic over the furniture… don’t push me, I might just go there! (if I was reading this out loud to you I would say “

Back to my topic… I can’t even stay on topic, much less do “IT ALL”, which of course IS my topic! whew! This is starting to confuse me (which as you know is not too difficult to do…). So! Since the holidays, I have had one hell of a time finding time to

  • tweet,
  • blog,
  • work my full-time+ job,
  • eat right,
  • spend time with my family,
  • exercise/ do my physical therapy,
  • read,
  • research fibro,
  • spend time with God (which should be #1),
  • spend time with family/ friends
  • paper craft

Obviously the must do’s always get done because they have to. Once prioritized, I thought it looked like this:

  1. work

Then I sat here for a while… and I decided I would rearrange things a bit. One priority just sucks… and it’s selfish and stupid, not to mention it’s not much of a life and I refuse to make that my life (did you say that in one breath?)! At one point in my life, that is actually how I lived… yes, I know, it is very sad, but true. I refuse to let that be the case now!

So, here’s what I will work on… AGAIN (because I keep forgetting and hopefully this time I will pay attention!): IN THIS ORDER…

  1. God
  2. My health
  3. My family
  4. My job
  5. My papercrafting

In between those things, I will tweet and blog. I will do my best and I will accept I can’t do it all. If I’m successful, I will get less and less of those looks from my husband where he’s shaking his head like I’m crazy because I’ve just taken on the world. If I’m successful… I. Will. Be. Content. Because I am content, I will have less flare ups… you see? I do get “IT”, I just have to accept that I am not Wonder Woman and I can’t do “IT ALL”. Those are two totally different things. But seriously, if I was Wonder Woman… I would totally dig that plane she had.

What do you think?

Thanks for reading. Stay 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!

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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!

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fibroFLUmyalgia… from bad to good

i am going out of my mind… it’s bad enough the weather is changing and every inch of my body seems to want to scream out in pain to let me know. it also seemed to be a good time to catch the flu. why not? why not get it all over with at the same time? i mean… let’s stop and pause for just a moment to think about why not:

  1. it’s not as if i haven’t missed enough time from work and
  2. it’s not as if laying in my bed 24 hours a day/ 7 days a week doesn’t thrill me to pieces and
  3. it’s not as if feeling like my head has been filled with cement is better than just the foggy feeling i usually have and
  4. it’s not as if my kids don’t love joining me in my bedroom for “mommy and me” time and
  5. it’s not as if that journey from my bed to the kitchen for my “once a day” trip out of bed doesn’t just make for a great “FIELD TRIP”! and
  6. it’s not as if the walls aren’t closing in on me in my bedroom and
  7. it’s not as if playing these same four facebook games don’t keep my interest, right? RIGHT?? and
  8. it’s not as if having the flu is really that bad… I mean it’s just aches and pains…

shit. it’s just aches and pains…. what the eff? if i thought my aches and pains were bad before… let’s just say TIMES TWO! i was not an 82-year old lady anymore, i was a 164-year old lady this week. a 164-year old lady that couldn’t sleep, had no appetite and was in excruciating pain. TIMES TWO.

this week, i was unable to walk the hall from the kitchen to my bedroom after dinner one night. it was a horrible experience. i was embarrassed. i was in shock really. it was as if i forgot how to walk. i could not lift my knees up to take a step so i just held on to my husband and literally scooted my way down the hallway in my slippers, one inch at a time. i had to stop three times to take a break it was so exhausting. meanwhile the tears are just rolling because i am in pain, i am frustrated, i am pissed off because i am once again put in this position of complete invalid. i feel the words at the tip of my tongue… “I AM PISSED OFF AND I CAN’T TAKE IT ANYMORE!!!!”, instead i just go lay down… take a few minutes to get it together and then call my son in to watch “grey’s anatomy” together and get my “mommy and me” time in. i cherish this time together like i cherish sleep.

this is when i realize… i am blessed. let me say that again. i. am. blessed. i have this beautiful child. my first-born. he is  a miracle child, he was almost lost to me during my pregnancy. he is a fighter, he has been since he was inside my belly. he had to fight to stay alive and he’s kept that attitude ever since. he’s an awesome kid. he’s graduating from high school this year and i must cherish every moment i have with him. so… screw this pain. don’t let this shit take away from my moments with him. i must remember this moment right now, this feeling i have right now. these are the moments to be cherished. you don’t get do-overs in life.

thank you for reading! time is so precious and i appreciate that you take the time to help me as i work through my experiences through my blog. this has helped me tremendously get through the days and nights.

stay cool!

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i have faith. i will overcome this disability!

I am disabled.

Wow.

I am a proud owner of a handicap placard.

Woot! Woot!

Is that how I am supposed to feel?

Yeah! I get preferred parking now when I go shopping! Hell yeah!

Let me tell you how it really goes down…

In the morning when I get up

this is how i feel…..

i wake up and

i feel tired and

in pain and

i slowly get out of bed after about 30 minutes (if i’m lucky) and

i get my laptop so i can work and

i sit down on my bed and

i start my work day and

my beautiful husband brings me coffee and toast and

i take my medication and

i drink my coffee and

i eat my toast and

by noon i am exhausted. i am already exhausted!!!

my brain can hardly focus and

i’m pretty damn frustrated because i know that it wasn’t that long ago that i was damn good at my job and seriously?

this fibro fog sucks!

i attempt to eat lunch, which these days ends up being my one real meal of the day after my toast and

then i attempt to work again and

i end up playing facebook games and

twittering and

now it’s dinner time and

i sit with the family and

i’m not hungry so we talk about our day and

after i go back to bed and

i attempt one more time to work and

again fibro fog and

again facebook games and

again twitter and

now it’s time for my night time meds and

i can’t sleep so i write my blog and

at the end of the day

this is

what i know for sure

regardless of anything else

i am blessed. i. am. blessed.

i am alive and

for today, i am able to work and

i have my family and friends to support me and

who believe in me and

i have faith.

i have faith that i will get better.

i will make myself a better person and

i will do my physical therapy and

i will eat healthy food and

i will educate people on fibromyalgia and

i will take my medication and

i will overcome this disability!

what else do i know?

if i can do this?

anyone can!

having the preferred parking ain’t what it’s cracked up to be… i’d rather walk the extra distance.

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don’t give up! my experience getting into the level 2 pain program…

dont-give-up1Last week was one heck of a week! I had been waiting for that week for months… the day when the decision on whether or not I get into the pain program was determined. I go to Kaiser, but I believe this process is probably similar at any hospital/ medical center. The main point you have to remember… DON’T GIVE UP! Be vigilant about your health, it’s YOUR body, and at the end of the day you are the only one that will make it a priority.

It all started when the nurse practitioner I had been seeing for years… retired. I was suddenly at a loss. She was very caring and seemed to know what was going on and prescribing my meds, taking me off work when I needed, etc. She was a Subject Matter Expert. So I thought. I still have extremely great thoughts about her, but not in any of that time did she even MENTION this Level 2 Pain Program.

May 2009. My first appt with, and I’ll call him… “Dr. No Bedside Manners” was horrible. He barely acknowledged me as having Fibro, was really abrupt while examining me… didn’t acknowledge I was in real pain even though I was clearly crying while he was examining me… told me that I shouldn’t still be taking opiods after all this time, basically made me feel like a drug addict… just all in all… not a good visit. This after seeing a very sympathetic, understanding yet knowledgeable NP before. I seriously thought to myself… “Oh crap, here I am again, back in Kaiser hell…” BUT I do have to acknowledge that he told me about the Level 2 Pain program and enrolled me in the introduction class. That’s pretty big… so kudos to Dr. No Bedside Manners for that. At any rate, when I walked out of there, I looked at my husband and decided that would be the last time I saw that guy.

My Intro class was scheduled for July. Unfortunately I had to travel for work, unexpectedly the same week and had to cancel out of my class. Had I known the consequence of that decision, I would have never canceled. When I received my new date, it was not until October 6th! I called every few weeks and there was just no way I was getting a new date. In fact, I received a call and the class was pushed out a few days!

In between May and October, I was bounced from my PCP to the Dept of Physical Med & Rehab. This is the Dept that does the referrals to the Level 2 Pain Program. I took the time to fill out a complete profile of myself and gave it to a Physiologist who put the information into the computer… only to tell me that she can’t treat me, but will refer me to the program (again) and basically her only role is as the “gatekeeper” to the Level 2 Pain Program. What? She can’t prescribe meds, she can’t help with my handicap placard, she can’t help me determine if I should continue to work or not…. she can’t help me period! Very good use of my time… and after this visit, I looked at my husband and we just walked to the car in silence and once in the car I just burst into tears.

So… back to my PCP… between May and October is a long time to be in excruciating pain. I needed a solution for my pain. I was not sleeping, I could barely walk most days. I was almost 100% confined to my bed. My life sucked. I up’d my anti-depressant, I had hit bottom. My PCP is looking at me, she says “I’m not a pain specialist, I can try to help you, but I’m not sure what I can do…” I’m ready to just give up.

Through all this, the only consistently good things? The support from my family… AWESOME! The support from my boss… WONDERFUL! The support from my friends… BEAUTIFUL! They are all the best, I couldn’t ask for better. I have been truly blessed from this perspective.

If it hadn’t been for all the support, I don’t know what I would have done. Let’s just skip to the good now. It’s now Friday, October 9th (my son’s 17th bday) and I’m at the Intro to the Level 2 Pain Program class.  Before coming, I had to fill out this 7-8 page form which provides a very comprehensive/ detailed overview of my pain problem. During the class, we are taught how pain is processed, active vs. passive chronic pain treatment, cycle of pain, about opiates… and about the chronic pain team. While in class, my information is reviewed by a psychologist.

There is only one absolute criteria that you have to pass… you cannot be on any opiates to join the program. You have to sign an agreement that you will discontinue use. This wasn’t an issue for me… I only take a few times a month. Once you finish the intro class, you get a call from the Nurse Care Manager to set up the pain team evaluation appt. And now we have gone full circle… back to where I started….

October 2009. Last week was my pain team evaluation appt. It was four hours and I met with a Doctor, Psychologist and a Physical Therapist. Each for 45 minutes. Earlier in the week I had a phone appt. with a Clinical Pharmacist to review all the meds I was taking and had taken previously. At the end of the three 45 minute sessions the three + Pharmacist + Nurse Care Manager all got together in a room and agreed on a treatment plan for me. They then brought me in the room and reviewed it with me. They recommended that I:

  • Participate in the 10-week Level 2 Pain Program starting in January
  • Light aerobic exercise 2-3 times a day for 10-15 minutes to work towards 30 minutes a day
  • Individual PT appts
  • Biofeedback appts
  • Individual Psych appts for cognitive strategies
  • Make some changes on my meds

There were two options for the Pain Program. There was a pilot program starting November 2 for Fibro and Migraine patients but the team felt it would be too heavy-duty on the exercise as well as the people they were including were, for lack of better words, in better shape than me,  I was not ready for it.

I am really excited to get into this. I hear great things about this. Success rate is very high providing you always follow what you learn and make it a change in your life and don’t fall back to your old habits.

This was a long post, but I wanted to make sure you understood the process I went through. This way, when you start to go through it, maybe you will be better equipped and your expectation will be more realistically set. It’s not a quick one… so please be patient.

Thanks for reading! Stay cool!