Was that one kick or two?!

• 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.

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: 

How We Began Dot's Social Security Disability Application

Complications

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.

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

Excuse me dear, but I must interrupt!

O Tender Brain, my complaints were undue!

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

Photo by mensatic

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. 

I am always on the lookout for comfortable, non-binding, pure cotton clothing for Dot.   Tight, restrictive clothes trigger muslce spasms in Dot's back.  Any type of tugging or squeezing causes pain flare ups and worsens her fibromyalgia symptoms.

So I was thrilled when I scored two fibro friendly clothing items for less than $15 total at Aerie's (by American Eagle) 70% off semi--annual sale. 

Challenges of Shopping as a Caregiver

It was my first trip to the mall in over a year. Hard to believe, I know. But because Dot's fibromyalgia and chronic pain condition requires me to act as an almost fulltime caregiver combined with the demands of my part-time job, I do most of my shopping online.  Finally, I had a chance to return my online order boo-boos at the mall (to save return shipping costs) and I totally lucked out with a great find!

Pain Free Pair of Shorts and Shirt

Sample of Aerie styleMy find? A really cute and soft pair of 100% terry cloth shorts in navy and a top in a jewel toned shade of plum - perfect for Dot's fibro pain. 

• Aerie Slouchy Boyfriend Shorts are normally $24.50
• Aerie Comfy Slouchy T is usually $17.50
• I bought both for a total of $14.62!

I actually had to ask if the final price was correct.  They said "yes," and explained that they were having a special semi-annual sale.  As a final flourish, they tied up Dot's bag with a lavendar ribbon.  

I wanted to get the word out to everyone in the Fibro World because there's nothing more satisfying than a super fibro friendly bargain!

Do you know of any great fibro friendly clothing discounts?

Breakfast Chez Dot and FibroMomGluten-Free Pancakes with Fresh Blueberries

Dot's breakfast took a turn for the better this week as blueberries made an appearance at our supermarket.

They were finally plump and juicy rather than small and zingy.

As anyone who has been working with gluten-free brown rice flour knows, there is almost no way to get a puffy, tender pancake out of a mix.  Fortunately, Dot is a die hard pancake lover so flat, chewy pancakes work for her, and having blueberries in the mix, makes her giddy.

And best of all, Dot's IBS and gastrointestinal symptoms - like diarrhea, nausea, and stomach pain - aren't triggered by this delectable gluten free dish.

Simple Gluten-Free Blueberry Pancake Recipe

Here is a simple recipe thanks to Trader Joe's Gluten Free Pancake and Waffle Mix.  

I halve the recipe on the bag because these babies take a while to cook and I prefer not to deal with leftovers.

Voila!  You have a pile of rather ugly but delicious pancakes.

Photo by EverJean

The Big Botox Moment

On Monday, I finally received Botox injections in my neck (my right sterncleidomastoid to be exact) after waiting for five months and experiencing chronic pain and muscle spasms in that area for almost 4 years.

After only 3 days I am starting to feel the effects, and I am cautiously optimistic.

To sum it up:

• My neck muscles feel looser.  
• I feel 80% percent less neck pain in an area that has been unaffected by all other methods of pain management.  
• I now have hope that I'll be able to move my neck normally again.   
• Maybe, just maybe with the end of the neck muscle spasms, I'll be able to drive again!...and work, and run....and the list goes on!

So how exactly does botox help?

Botox (Botulinum Toxin) injections are placed in a spastic muscle or nerve.  The botox stops the nerve ends from sending a impulse to the muscle.  This prevents a muscle contraction/spasm.  

The goals of doing this are threefold:

1. The fewer muscle spasms and the less intense they are, the more a person's pain is reduced.
2. The less pain, the more a person is able to increase her range of motion and build back to a normal, functional life.
3. If the neck or facial muscles responsible for migraine pain are injected with botox, these muscles will relax and bring pain relief.

Since my neck is the prime source of much of my migraine pain, I hope the frequency and severity of my migraines will drop dramatically.  In the past 3 days at least, I've been migraine-free.

Beware Pain!

One major challenge I've run into with fibromyalgia, migraines and chronic pain is the multitude of wacky and sometimes unrelated symptoms.  I find myself needing a whole arsenal of devices and tools to fight pain on all fronts.

Arm Yourselves!

I'd like to share some the contents of my Fibro Fighter Tool Kit with you in hopes that the tools might help your pain, migraines and chronic discomfort - as they have mine. 

However, I do realize that everyone's body is different and what helps me may not do the same for you.  If you're going through the trial and error process to find pain relief like I did, I hope this will give you some ideas and save you time.  So to kick off this Fibro Fighter Tool Kit series, I'll begin with a review of one tool I use every night: 

The Tempur-Pedic Sleeping Eye Mask Review

Rating: 5 out 5 possible Dots

Dot's Thoughts: Tempur-Pedic's sleep mask is one of my most prized possessions/fibro weapons. Teamed up with ear plugs, the Tempur-Pedic Sleep Mask creates the perfect sensory environment that fibromyalgia and chronic pain people need to get quality, deep sleep - no light and no sound.  

Joe - Your Average Injured Occipital Nerve

Last month, my doctor said he wanted to use ultrasound guided nerve block injections to numb my injured nerves that are constantly flooding my body with pain signals.

I jumped at the chance even though it meant getting shots in my head, hoping that they might finally stop the daily throbbing neck pain and eye pain.

Occipital and Trigeminal Neuralgia

I asked what I could expect from a trigeminal and occipital nerve block.

My doctor explained that he wanted to essentially "reboot my body."  

Like a malfunctioning computer that's jammed with too many cross signals, my nerves have been overloading my body with an abnormally high amount of pain signals for nearly four years. 

As a result, my body has been continually stressed and wound up because of its need to constantly respond to the misfired pain signals.

He said that when numbed, my nerves would stop flooding your system with pain impulses. Hopefully, this would give my nerves a chance to desensitize and remember what it was like to be normal.  Ideally, the rest of my body could then stop being in a constant state of pain or anticipated pain.

My body might finally begin to recalibrate and heal.