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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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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.

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breathe in… “let”… breathe out… “go”…

Warning: I strayed from the regularly scheduled blogging and went with a more childish topic… I couldn’t resist…

So… I went to my Restorative Yoga class tonight, as I do every Thursday evening. Yet somehow tonight was going to be different.

I went to class and met up with my friend, there was only the two of us tonight. Usually there are three of us. Was this why things were different? As we enter into the yoga room. Very quiet, serene, candles lit… the lights are dimmed and I feel relaxed the moment I enter the room. I love this place. I look forward to it every week. It’s the one place I go to that I know my body will actually cooperate. I love this hour of relief that I get from my fibromyalgia. I go to my spot and put my mat down and apologize for dropping it just a bit too loudly on the ground. I whisper as I talk to my friend. It’s really warm in the room tonight. Is this what is different? No… wait, there are two men in this class. That’s different.

As I start to put my second mat down on the ground, I hear from behind me, the man laying on his mat let one loose… I mean he seriously RIPS ONE. wow. THIS is what is different.

I just keep talking to my friend like nothing happened. I’m going to give that man a one time gas pass. The class has not started yet. We are all warming up and hey… stuff happens! I’m going to let that slide. We all have our slip ups… you know, we’ve all slipped up.

The instructor comes in and we start warming up. For the next 10-15 minutes we stretch and do the normal breathing exercises to prepare for the restorative poses. I am relaxed and focusing on my breathing. The gas man is no longer on the brain.

Instructor: “Let’s get ready for our first pose.”

We all take our mats towards the walls and I get in the first pose. I am so ready to meditate.

Instructor: “I want you to just relax and let all the…….”

Gas Man strikes again… PFFFFFFFFFGGHHHHHHH!!!!!!The Gas We Pass

and again… PFFFFFGGGGHHHHHHHHH!!!!

and again… PFFGGGGHHHH!!!!!

and again PFFFFFFFFFFGGGGHHHHFFFFFFFFF!!!!!!!

Instructor: “… stress of the week leave your mind… as you breathe in say “LET” and as you breathe out say “GO” …. “L…E….T………………G….O…..””

Seriously. SERIOUSLY??  Did he just say that? I mean I know he says that every week, but couldn’t he have come up with some new material JUST FOR TONIGHT? I was no longer relaxed. I was dying inside. I knew if I even whispered a laugh I was going to lose it. I would not be able to stop laughing. I would have to leave my favorite yoga place and never return. I would die of embarrassment for laughing like a 6-yr old at the gas man.

I couldn’t look at my friend, I couldn’t talk, I couldn’t think about what happened. Here I was in my yoga class… NOT relaxing. I started to count… I started to think about funerals, arguments I’ve had, anything that would NOT make me laugh. I had another 45 minutes of class… this was going to be a long class…. this was a challenge. Thank goodness my other friend didn’t come, there is absolutely no way she would have been able to make it through that moment. That would have been  my last yoga class.

Needless to say… I did make it through and the rest of the class was quiet, thank goodness!

Well, it could have been worse. I could have been the one with gas!

Thanks for reading! 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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it’s ironic: invisible condition, invisible people & social networking

myfoggybraini found out i had fibromyalgia over a year ago… i started reading books and attempting to learn as much as possible, yet after a year has passed, i feel like i was not taking in as much information in as i should. in the last four weeks, i have learned more than in the entire year, not by books or doctors, but by social networking.

my name is “my foggy brain” and i am a fibromite. i have the “invisible condition” noone wants to believe and noone can see. the strange thing is, social media, by definition is “the unseen”. it is virtual. it is facebook… it is twitter… it is blogging. so i remain “invisible”. i remain invisible by choice. i admit i am new to this. i have only been doing the fibro twitter and blog thing for a month so maybe there is a time when people get together. i’m not sure if i’d be up to doing that… i mean by definition, we are a group of people who don’t travel well. i can’t fly and can’t see a time when that would be a good idea. i can’t ride in a car more than 45 minutes without major pain. soooooo where and how would a “tweet up” happen? don’t get me wrong here… i was just sitting here and found it ironic. invisible disease/ invisible people.

i have been doing the social networking thing for a long while now, i have two twitter accounts (probably not such a great idea for someone who can barely finish a sentence… but i digress). i have an account just dedicated to my fibro friends and it is the best thing i could have ever done. very focused, provides me great information and the people… the people are GREAT! the level of support that the people provide to each other is so nice… i would have never thought it would be so nice. it is like a 24/7 support group. i totally underestimated the value of twitter in this respect. i am kept completely up to date on the latest and greatest news, medications, therapies, etc. AND provided wonderful support… AWESOME!

with my blog… i love the comments. it’s nice to know i’m not alone. i have been reading other people’s blogs and it’s been inspiring… so many people are suffering from fibromyalgia and feel alone and many don’t have a lot of support. it’s hard to read, i want to reach out and jump through my laptop and help. this condition is so tough… it affects people in so many different ways…  the worst part about it to me is that it seems to affect people who in the earlier years were HIGH HIGH HIGH performers. people who went out of their way to help others and were always  doing too much and basically burned out their bodies. now when they need help, they don’t have a support system. just doesn’t make sense.

what do you think?

btw… if you want to follow me… i am @myfoggybrain

thanks for reading! stay cool!

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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!