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We're a mother-daughter team.  Dot is in her late twenties and has had fibromyalgia, chronic pain and migraines for nearly 4 years. Fibro Mom is a 60-ish, sometimes crabby caregiver who works part-time.

We talk about our daily triumphs and setbacks in coping with an invisible and chronic condition.

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Thursday
Jul152010

You know you have fibromyalgia when...

Was that one kick or two?!You know you have fibro when...

  • Lyrica ads make you laugh.  
  • You can't answer the question: "Where does it hurt?"
  • Your exercise routine has a maximum of 1-2 repetitions (but it's still not easy!)
  • You say "oops" a lot and tip over.

  • It takes a long time to say the same thing twice.

  • You say the same thing twice, a lot, a lot.

  • Fibro Fog is always passing just overhead.

  • Your doctors have stopped making eye contact and say "hmmm" a lot.
  • You've been screened for lupus, lyme disease, and multiple sclerosis. 
  • Your best friend is your heating pad.
  • Eggplants and tomatoes become your enemies.
  • Your temporary disabled parking placard keeps getting renewed.
  • You let your family members cut your hair.
  • Your old running shoes still look brand-new.
  • You've been to all the "ologists": rheumatologist, gastroenterologist, dermatologist, otolaryngologist, neurologist, psychologist...
  • Cartoon hippos make you happy! Even if you can't spell hippopotamus. 

 

PS. For a really funny, highly rated children's hippo book,

check out Dot's fave: Hippos Go Beserk by Sandra Boynton.

 

by AuthorFibro Mom on DateJuly 15, 2010 Comment9 Comments | in
Tuesday
Jul132010

Dot Gets Social Security Disability for Fibromyalgia

Part II  - Dot's Social Security Disability Application Begins

First of all, my apologies to those of you who have been waiting for Part II to be posted. Part I was about what went into our decision to apply for disability.

Here, I will talk about how we proceeded with the disability application.  To keep this post from being overwhelming, I have divided it into 4 parts: 

  1. How We Began
  2. Complications
  3. Our Strategy
  4. Helpful Links, Resources and Tips

How We Began Dot's Social Security Disability Application

  1. Googled and read everything on line  
  2. Read books on Social Security Disability  
  3. Contacted and tried to hire a disability lawyer through a free referral system  
  4. Called Social Security for a paper application form since Dot couldn't use the computer
  5. Sounded out Dot's doctors on whether they would support her disability claim
  6. Requested doctor's reports from each doctor 
  7. Filed online

Complications

  1. Photo by Evil ErinFibromyalgia not listed as a condition covered by disability.  There are no definitive tests to confirm fibromyalgia so far (ie. blood tests, MRI's, xrays).  And worst of all, FM has a bad rep as a malingerer condition.
  2. Rarely approved first time. It's very difficult to have a disability claim approved on the first round.  

Click to read more ...

by AuthorFibro Mom on DateJuly 13, 2010 Comment6 Comments | in
Tuesday
Jun292010

The Fibromyalgia Advocate Book Review: Fibro Mom Re-reads a Great Fibro Book

The Fibromyalgia Advocate by Devin J. Starlanyl

When Dot did not heal from the soft tissue trauma from a car accident, we started buying and borrowing books to try to figure out what was happening with her body and what we should do.

One of the books I bought online because there was no copy in our library system, and because it got great reviews, was The Fibromyalgia Advocate by Devin J. Starlanyl.  

Disability Application Helper and All Around Guide

I initially used the book to help with Dot's application for social security disability, which Dot received on her first try without a lawyer, thanks in large part to the advice in this book. There are two chapters which were invaluable - Legal Rights and Advocacy and Social Security and Medicare.

Click to read more ...

by AuthorFibro Mom on DateJune 29, 2010 Comment4 Comments | in , ,
Thursday
Jun242010

Ode to Fibro Brain

 

Dot's Big Beeping IdeaO Little Fibro Brain of mine,

Why are you always leaving me behind?
I swear my last thought bordered on divine, 
But you left it in the dust before it could shine.
You speed around like a crazy car going zoom zoom
And I'm left alone breathing your fumes
(and drawing cute cartoons).
You toot your horns and blast your radio, 
Flash your lights like we're at the disco.
All the while, I can't keep pace,
My ideas fade and then erase.

Excuse me dear, but I must interrupt!

The charges you fling may cause me to erupt.
I used to be calm and productive, it's true,
But that was before fibromyalgia made things askew.
This dizzying speed, I just can't control.
I put on the brakes but they just don't hold.
Your cruel words have made me worse, I'm sure.
So many goofy thoughts, I've had to endure!
So I'm counting on you to find a cure.
(But remember, my sweet, no more manure.)

O Tender Brain, my complaints were undue!

I didn't realize you were suffering too.
We'll work together to win this fight
with every weapon available in sight.
Botox, Savella, PT and nerve blocks,
The solution to fibro -- you and I will unlock.

 

-- Written by Dot and Fibro Mom (representing Dot's Brain)

by AuthorDot on DateJune 24, 2010 CommentPost a Comment | in
Sunday
Jun202010

7 Things Doctors Can Do to Help Fibromyalgia and Chronic Pain Patients without Medication

Photo by mensaticSmall Changes, Big Impact

I'm very fortunate to have a talented, knowledgeable and caring team of doctors who treat me with dignity and respect. My doctors are focused on providing me the best medical care possible.  

But before I get to actually see my doctor, there are a few things that would make my office visit more productive and pain free.  

These items not only help fibromyalgia and chronic pain patients, but they also benefit physicians by

- reducing staff workload
- maximizing office efficiency 
- ensuring that their patients are not in so much pain that they cannot express their medical needs   during the appointment

7 Point Wishlist

1.  Written instructions and notes.  I really appreciate it when my doctors provide me written notes/instructions at the end of my appointment and additional info regarding any treatment options we've discussed.  I always bring a notebook, but because of fibro fog, I can't process material quickly.  I often miss huge chunks of important info that I really need to know.  The doctors who say, "Don't worry, I'll write this down for you," make me feel more confident and help me take a more active role in my health. 

Click to read more ...

by AuthorDot on DateJune 20, 2010 CommentPost a Comment | in
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