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!

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!

i did it… and i’m gonna celebrate it!!

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YAY!! I did it!!

Okay… all I’m sayin’ is… I DID IT! I was in some serious pain and I really believed I was not going to be able to go out with the kids trick-or-treating… but I ate some food, put my shoes on and I walked out the door.

So let me backtrack a bit. I went to my daughter’s soccer game in the afternoon and thought I was going to have to go to bed on the way home from that. I was almost in tears on the way home, my body hurt so bad. I just took some deep breaths and when I got home, I sat down and relaxed for about 20 minutes before folks started coming to the house.

As family and friends came over and we started to get the food out and the kids started to get ready, I started to get excited and at the same time really nervous… “would my body fail me… would I just go for it and pay later...”

My sister-in-law drove over the hill from Santa Cruz, bringing with her my 11-year-old niece and 3-year-old nephew… God bless her for that!

As we all stepped out the door to go trick-or-treating, the thoughts going through my mind… “please don’t make me have to call my husband to pick me up… body, please don’t fail me now… just let me have fun on this Halloween night!

My nephew kept me laughing for the next hour and a half as we walked the neighborhood. He was sooooo excited, his excitement and happiness from the night just overflowed and had me smiling and laughing!! He ran from house to house to house and told us every piece of candy he got from each house. He was first at the door in front of the big kids. He said “Trick-or-Treat”, “Thank You! Happy Halloween!” at every single house without being told. He knew to only go to the houses with the lights on, he told us which houses to go to… he carried that bag of candy by himself and did not complain ONE TIME! Man! I was in awe of this child… how can we bottle up that joy? At the end his bag of candy had to weigh at least 1/2 his body weight! He carried it like Santa carries his bag of toys, slung over his shoulder…

So… yes… I am celebrating the fact that I walked the neighborhood and didn’t have to be picked up!

Mostly, I am celebrating the fact that I have this little angel to be thankful for, that made me so happy and allowed me to enjoy Halloween for another year.

Stay cool and thanks for reading!

sleep… what does that feel like?

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What have I done to deserve this??

** I will not be held responsible for any spelling/ grammatical errors… blame this dang insomnia!! **

Sleep… who would have thought it was so difficult to achieve such an easy task? Apparently I always took it for granted. I remember in high school sleeping all the time! I guess I used up all my sleep hours. Damn! Had I only known then what I know now… I may have saved some of those sleep hours for now. Hmmmmm… doubt it I was too selfish then!

Insomnia is the best torture tactic ever. Without sleep one starts to feel crazy… at least I do. It’s been weeks since I’ve slept through the night. I don’t know why people say “I slept like a baby”… I’m sleeping like a baby now and waking up every couple hours SUCKS! The last few nights I can’t even get through an hour straight… Who made up that saying? Babies don’t sleep through the night! I guess if I’m ever in a situation where I need to torture someone, I know what to do… (Now you know I need sleep! I’m thinking I’ll be in a situation where torture figures in… )

I feel frazzled, my head feels like it weighs 20 pounds and what’s with this constant fog? I mean I live close to San Francisco, but there’s no fog in this city I live in!! It’s sunny and blue skies outside… I’d really like to take advantage of this weather!!

I would also like to work and be able to sound and feel like an intelligent human being. I am human, aren’t I? Wait… maybe THAT’s what the dr. forgot to test me for!! I’ve been tested for everything else!

I’ve just been prescribed Nortriptyline on top of the other meds I’m taking. I started to take it last night. I hope it helps with the pain and helps me sleep… I’d like to know what it feels like to sleep again… ahhhhhhh…. the feeling of …. zzzzzzzzzzzzzz……..  huh, sorry I dozed for a minute! Side effect of no sleep during the night… just kinda doze off and on throughout the day… yeah right! I wish!!

Praying for sleep tonight… for me and all you beautiful fibromites out there suffering from the same crazy insomnia…

Stay cool! Thanks for reading!

today’s a bad day…

Blue skies and windy outside and I am still laying down for the fourth day in a row. I think I have become a professional facebook gamer. It’s a good enough distraction from the pain, but it is starting be a constant reminder that I am doing nothing.

I stare outside the window and pretend I’m looking at the ocean. I wish I were scrapbooking or capable of reading a book. For all the hours I have sat and played facebook games, I could have completed many scrapbooks or read books that could enrich my life! It’s my life wasting away and it is THE MOST frustrating experience ever. I’m too anxious to read and I’m in too much pain to sit and scrapbook.

The last 3 days I have been in a deep depression. I feel like I am in a dark cave and I can’t see my way out. The fibro Twitter gang that I follow have been great! I feel like they can relate to what’s going on. My friends are worried and I feel incredibly sad about that, I just don’t know what to say or do. My husband is worried and I’d like to just snap my fingers and feel better. It just doesn’t work that way. I have to claw my way back to the light that is reality and make myself feel again. I feel broken.

I know I will have days that are good and days that are bad. I’m looking for my next good day to come soon…

Thanks for reading… stay cool!

celebrate the small victories…

I had this crazy pain today in my feet that felt like the most intense type of pins and needles… like my feet went to sleep… It started to shoot up my legs and I just froze. It was so painful, I just froze. I called my husband when it first started to come and help me, do what? I’m not sure because when he came in the house I could not speak I was in so much pain.

Can I tell you how frustrating this experience was? I woke up this morning feeling pretty good. I intended to do some scrapbooking. I came and sat down and started to work and was highly motivated. FIFTEEN MINUTES into my relaxing scrapbooking project… BOOM! My feet just exploded in pain. WTF? I just don’t get it.

The pain lasted about 10 or 15 minutes… but my emotional state was not great. I was frustrated… very frustrated. I silently cried tears once again out of frustration for this pain causing havoc in my life. I was angry for getting emotional, which of course, didn’t help… Needless to say, I was exhausted afterwards. I ended up falling asleep for a couple hours.

I did get up and push myself up and off the couch and back to my scrapbooking project. I am very proud of myself. I finished ahead of my goal for the day. I will celebrate that!

It was a very rough day, but I made it through! I need to celebrate the small victories more often… Today I was so much better than my FMS!!

It’s so hard to remember that we are more than our condition, stronger, better… we need to celebrate our victories no matter how big or small… we need to lift ourselves up when we walk around the block for the first time, when we have a pain-free day, when we can remember where we parked the car… I am learning, with this condition, I need to celebrate all my wins. I don’t know how much pain I will be in tomorrow, but I can do my best to control my environment and stay positive.

Be cool!