Fibromyalgia Fog Journal

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Thursday, March 24, 2005

Twisting Face?

The side of my face, which has the Trigeminal nerve problem, seems to be twisting.
I have noticed my eyebrow appears to be going up while my cheek appears to be going down.
Could this be my imagination?

~~~
It's a shallow life that doesn't give a person a few scars.
Garrison Keillor (1942 - ), in Salon.com

The scars of others should teach us caution.
Saint Jerome (374 AD - 419 AD), Letter

Saturday, March 19, 2005

My Day 3-19-05

Still working on the SSD forms. Worked on them all day except for food, drink, naps and other short breaks. I keep getting distracted. It is hard to keep focused on the forms. Thinking about a question makes me remember something and then my mind is off. I have to keep pulling myself back. Not a very easy task.

Pain: Mainly TN and some muscle pain for most of the day, (level 6). Toward the end of the day it jumped up to a level 9 due to light and sound hypersensitivity.

Energy: Not to bad today. Level around 4. A surprisingly good day.

~~~
"Derive happiness in oneself from a good day's work,
from illuminating the fog that surrounds us."
Henri Matisse (1869 - 1954)

Friday, March 18, 2005

My Day 3-17-05

Went to the doctor for my arm today. (See My Day 3-16-05.) My arm is as good as it is going to get. The good news is this means no more physical therapy, which can be quite painful. The bad news is I will miss everybody. I do not get to socialize much. PT and doctor visits are the only time I see other people.

Pain: Ranged from moderate(6) to disabling(9).
  • Muscle pain mainly in in legs and arms.
  • Sight and hearing. Spent most of the day wearing sunglasses and ear plugs.
  • Some TN.
Cognitive: Very dizzy, queasy, woozy, spacial issues, overly sensitive to light and sound, cannot talk, one word sentences and set myself on fire.

Energy: Could not keep my eyes open after noon. Took a three hour nap and still had a hard time arising.

Depression: Cannot talk, cannot follow conversations, no more PT, sunglasses & ear plugs and to top it all off I set myself on fire.

"Deeds, not words shall speak me."
John Fletcher (1579 - 1625)

Thursday, March 17, 2005

FIRE!

I was putting some water on to boil for tea and reached up to get a teabag. I have very long hair and it must have gotten to close to the flame. I did not even realize I WAS ON FIRE! Then I smelled it, turned around and saw the flames! I grabbed all of my hair and pulled my hand down it. All of the flames went out instantly.

Now
  • I have fewer split ends
  • I know to wear my hair up when in the kitchen.
  • I understand what my family means when they say I am becoming dangerous in the kitchen.
  • I will use the microwave instead of the stove whenever possible.

Wednesday, March 16, 2005

My Day 3-16-05

I went to physical therapy today. I have to go 3 times a weeks because I really messed up my arm last June when I fell. I fell because of FM.

The reason I fell is because some of the symptoms of FM are:


GENERAL NEUROLOGICAL
  • Lightheadedness; feeling "spaced out"
  • Sensation that you might faint
  • Vertigo or dizziness
  • Numbness or tingling sensations

EQUILIBRIUM/PERCEPTION

  • Feeling spatially disoriented
  • Dysequilibrium (balance difficulty)
  • Staggering gait (clumsy walking; bumping into things)
  • Dropping things frequently
  • Difficulty judging distances (e.g. when driving; placing objects on surfaces)
  • "Not quite seeing" what you are looking at
Sometimes I have the sensation that I don’t know where my body is in space and I get very dizzy. This has caused me to fall or hit against walls several times. In fact, last June this condition resulted in the dislocation of my shoulder. The bone pressed on the nerves for 12 hours and I ended up with really bad nerve damage. I go to PT to get the use of my arm back. (By the way, the pain is horrible!)

I am always exhausted after PT so I have no choice but to sleep for the rest of the day.


Tuesday, March 15, 2005

My Day 3-15-05

I HATE filling out social security disabilities forms.

If they really wanted to help the truly disabled, It should be that if one is able to complete all of the paperwork on their own they are not bad off enough to collect SSD. As I sit and look at the mountain of paper with the lengthy questions, most of which I can never remember how they started by the time I reach the end, I wonder what happens to those who just are to disabled to complete it. This all stresses me to much to continue and I find myself needing to nap.

Pain: Mainly TN but also some FM in my left leg.
Level around 7. Serious, almost disabling.

Energy: I am so tired today! I just cannot stay awake. Did I over do yesterday? Going to bed very early tonight.

Brain Fog: Woozy all day. Speech slurred. Cannot find words or communicate well.


Monday, March 14, 2005

My Day 3-14-05

  • Pain: Mostly trigeminal nerve pain, but I wonder if the severity of the TN pain is masking the FM pain the way the pain from hitting one's thumb with a hammer might seem less when one stubs one's toe. The FM pain is bad enough that I need to use a cane to walk.
  • Brain Fog: Cannot follow conversations. Speech is slurred. Hard to find words. Use wrong words.
  • Depression?: Got the neuropsycologist report back from when I had been tested several weeks ago. That day I had been so wound up. I rambled on and on. I wanted to tell her everything quickly before I forgot. I had taken a Ritalin that morning so I would be able to stay awake during the exam. I take them so infrequently I was almost racing. I had no clue what a neuropsycologist did. I expressed myself all wrong. She thinks I am a slacker who just wants to get out of working. I do not blame her. That day I would thought I was nuts, too.
Was the neuropsycologist right? Was I a slacker? I set out to prove her right. I will start of slowly. I will strive to add and complete a few more chores everyday. If she is right maybe I could go back to work. If I can I am sure I would make more money than I would get from SSD.

This is my new goal.

~~~

"The celebrated Galen said that employment was nature's physician.
It is indeed so important to happiness that indolence is justly considered the parent of misery."

C. C. Colton

Why in a blog?

  • I do not have to search for a paper and pen.
  • I do not have to find a clean, uncluttered surface on which to write.
  • I am VERY unorganized. I lose everything. Where would I keep the papers? They would be all out of order, food stained and incomplete.
  • As hard as it is to admit this, I cannot read my own handwriting. When I am in a fibro fog it gets even worse. Sad but true.
  • The computer is always on and ready to go.
  • I have a hard time remembering things from one minute to the next. This way, all will have to do is type it into the computer.
  • I can add things to it anywhere I go, as long as there is a computer. Not that I go anywhere but doctor’s offices.
  • If my doctor wants to see what is going on I do not have to remember to bring it to him. He can access it from his office or even his home.

I am sure there are more but I cannot think of them right now.

Introduction

Hi, my name is Moe.

I am a married 48 year old woman with 2 daughters.

About 7-9 years ago
I came down with an illness that was first diagnosed as mononucleosis, then chronic fatigue and finally fibromyalgia. It has not improved so it seems I am stuck with it for the rest of my life.

I was unconscious for two years. My husband tried to wake me up to eat and I was able to make it to the bathroom but besides that I slept.

Obviously, I was out of work for a long time. My boss was absolutely wonderful and when I finally went back to work it was for part time, only. I got to choose my own hours, I could leave when I needed to and it was okay if I needed to take a week off, here and there, when I had Fibro Flares.

Unfortunately, she moved on and my flexible schedule did not fit into the work style of the person who took over her position.

In addition, I have just been diagnosed with a brain tumor that is wrapped around my trigeminal nerve.

I am in constant pain, on lots of meds and have applied for disability. I am hoping I get approved before I have to declare bankruptcy.


I have found my disabilities have provided great learning experiences. Some of the things I have learned are:
  • empathy for others,
  • an appreciation of the fragility of health,
  • the intolerance of the ignorant,
  • how wonderful family & friends can be,
  • how easy it is to be forgotten,
  • and the strength those with disabilities can display.
One wise disabled lady I know said to me,
"We should not be referred to as 'disabled'.
Those who are not disabled should be referred to as`temporarily-abled'. At some time in our lives we are all disabled."

The reason I am starting this is to keep a journal of my thoughts and feelings over time. Maybe if I keep track of things I will be able to match my Fibro Flares to something I am experiencing. If I find a correlation, maybe I can find a way to reduce them.