SS Disability Paperwork

I wonder how the Powers That Be sleep at night knowing that anyone who really is disabled would never be able to complete the paperwork they require.

Two & one half hours!

Well, my moment of clarity and freedom from pain lasted from 8:00 am until 10:30am. Two and one half hours!

Then I went into almost a week of fog and pain. Communication of any kind was difficult. During this week, my ability to communicate was terrible. Sometimes I could see people trying to talk to me. I could see their mouths moving and I heard sounds coming out but the sounds they made did not make sense. Most did not seem like words at all. Every once in a while a familiar sound would be spoken and I thought of it as a real word but then the rest made no sense.

Why was I pain free and coherent for two and a half hours?
Maybe it was so I could say hello to my family.
Maybe it was to tease me. Show me a glimpse of my past self.

Why did the pain and fog come back after 2 ½ hours?
I took no medicines. I wanted the lucidity to last as long as possible. This would explain why the pain came back but what about the fog? Clearly the fog is not caused simply by the medication.

I hope this made sense. I am still quite foggy.

~~~

The question is,’ said Alice, ‘whether you can make words mean so many different things’”
(Lewis Carroll).

“No one means all he says, and yet very few say all they mean, for words are slippery and thought is viscous”
(Henry Adams).

The true mystery of the world is the visible, not the invisible.
Oscar Wilde (1854 - 1900)

The most beautiful thing we can experience is the mysterious. It is the source of all true art and science.
Albert Einstein (1879 - 1955)

The creator of the universe works in mysterious ways. But he uses a base ten counting system and likes round numbers.
Scott Adams (1957 - )

It is better to obey the mysterious direction, without any fuss, when it points to a new road, however strange that road may be. There is probably as much reason for it, if the truth were known, as for anything else.
H. M. Tomlinson

QUICK!!! TAKE A PICTURE!

I woke up this morning around 8am and I am
PAIN FREE!!!
(Disclaimer- Discomfort, yes, but no pain to speak of!)
AND

MY MIND IS CLEARER THAN IT HAS BEEN IN WEEKS? MONTHS?

QUICK!!!!!
TAKE A PICTURE!!!

24 Hours To Early

I am still in such a fog. Had to go to SSD lawyer’s appointment but I really did not feel up to it. My husband and I arrived 10 minutes early and made our way to his office. His office was one flight up on the second floor. I was standing at the bottom of the steps, psyching myself to start up, when a very well dressed man came hurrying down the steps and left the building. We made our way up the steps and into the lawyer’s office. A young woman turned to us with a startled expression. We introduced ourselves and told her we had an appointment. She apologized and told us the lawyer had just left for court. After checking the schedule she told us our appointment was the following day. Oh boy, we were a lot earlier than we thought.

How could I have made the appointment for Wednesday? I get an adjustment and PT on Wednesdays. To make matters worse the second half of my EMG was scheduled for the same day.

Pain:

• Muscles and tender points. Walking with a cane. Level 8.


• TN Occasional stabbing pain on left temple and by upper back teeth. Level usually 2 occasionally 8.

Exhaustion: Was so tired when I got home I collapsed into a chair and fell asleep for at least 2 hours. Still tired when I woke up. Level 8

Cognitive: Dumb, dumb, dumb! I feel so embarrassed!
Oh well, the bright side is I get to organize my papers a bit better.

~~~

"I have a new philosophy. I'm only going to dread one day at a time."
Charles M. Schulz (1922 - 2000), Charlie Brown in "Peanuts"

My Day 10-03-05

I am so exhausted today! I cannot believe how tired I am. For the life of me I cannot figure out why I am so tired. I thought I slept okay. Sure, I woke up a few times to get more comfortable. TN pain woke me up once. My burning feet woke me up a couple times. Hmmm, now that I typed this out maybe I did not sleep as well as I thought I had.

My legs are so weak! This is a relatively new development. It is not the FMS pain and weakness that I am used to. It is more like I have been sick with the flu and am trying to get out of bed before I am well enough. They keep wanting to give out on me. Standing for even short periods of time is difficult.

Tried to go to the chiropractor & PT but my daughter lost her keys. She was running around, very stressed, looking for them. I tried to help by asking if she had looked in places I had thought of. My words got all twisted; I stuttered and took a long time to suggest she look in places she had already checked twice. She got very cross with me. The stress made it impossible for me to go. Had to reschedule for Wednesday.
Pain:

• TM - Not to bad for the most part. A bit of a headache, but when I bend over or even lean over the pain shocks me. Level 3 most of the time 7 when I bend over.
• FMS – Still very achy. Every pressure point hurts. I get tired of complaining about it. Level 7

Cognitive:Cannot talk. My daughter, who was already stressed, got so frustrated with me she told me to formulate all the sentences in my head before saying them, including finding the words I want and how they are pronounced. I might as well write a letter. I just stopped talking. Level 9

Tried to organize the papers for the lawyer’s appointment for my SS Disability claim. I thought I had everything in such good order. NOT. This is the story of my life these days.

I LOVE SURPRISES

My husband works nights and I cherish the nights he has off. There are times he will take a night off here and there as a vacation day. He makes sure to tell me a few weeks in advance at which time I express surprise and delight.

Every week he tells me again. Again I am surprised and delighted. The week of his vacation day he will tell me every day. Sometimes I remember and sometimes I am surprised.

Then the night of his vacation day arrives and I express concern that he is not dressed for work and will be late.

Imagine my surprise and glee when I find out he has the night off!

~~~

Think to yourself that every day is your last;
the hour to which you do not look forward will come as a welcome surprise.
Horace (65 BC - 8 BC), Epistles

My Day 10-2-05

MORNING

Slept terribly. Then, when I wanted to be awake to watch CBS Sunday Morning, I kept fading in and out so I only caught pieces of each section.

Youngest is doing better. Her fever broke and she is requiring less care.

Pain:

• Headache, Terrible level 6 –8.
• Muscle – tender points, arms legs, neck, legs, arms. All over. Level fluctuates between a 6 and 8.
• Sensory – Wearing ear plugs and sunglasses in the house. There is a cricket outside that is chirping at just the wrong pitch. The ringing in my ears has really gotten bad. Level 8.
  

Weakness: Lately I have been feeling really weak in my legs and arms. I cannot stand for to long. Anything that requires standing I have to do for short periods of time and then rest before continuing. Level7

Cognitive: I thought I was doing okay until my eldest got home from meeting and we tried to have a conversation. Using wrong words, stuttering, forget what I was saying in mid sentence. I finally just let her talk and I listened. Level 7.

Dizzy: Not as bad as yesterday. Level teetering between 3 and 4.

EVENING

Took a nap from 3pm to 5pm. A 2 hour nap and still had a hard time getting out of bed. I had awakened with a start several times during the nap.

Made baked chicken, baked potatoes and corn for dinner.

Pain:

• Headache, Still terrible even after a nap. Level 6 –7.
• Muscle – tender points, arms legs, neck, legs, arms. All over. Level 7.
• Sensory – No longer wearing ear plugs and sunglasses in the house. The ringing in my ears is a little better. Level 6.
• TN – Much worse than this morning, especially when I bend over. Level 5.

Weakness: Weakness in my legs and arms quite bad. Standing up to make dinner was very difficult. I had to find ways to work without putting a strain on my legs, such as resting one foot and then the other on a stepping stool and I sat down between activities as much as I could. Level7

Cognitive:

• Hard to follow some of the dinner conversation and a show we watched after dinner.
• My youngest swears that I had given her permission to do something. For the life of me I cannot remember doing so. My husband told me I had let her do it several times before, but since I am the parent I could make a new rule. It was rather frightening. I really do not remember her ever doing it before.
• The good news is I did not stutter. I did say the wrong word several times but the word I said instead sounded similar so that is a big improvement.

Dizzy: Better than this morning. I did get a bit woozy a few times but that did not last to very long. Level 3

The weather was absolutely beautiful today. A much better than average day.

~~~
"It was one of those perfect English autumnal days
which occur more frequently in memory than in life."
P. D. James

My Day 10-1-05

I am so woozy and dizzy today. Several times my eldest daughter had to steady me while I walked to a chair. My youngest daughter is very sick today with a high fever. I cared for her while my eldest went out on an errand. I had to be very careful walking. The last thing I wanted to do is fall. I have a tendency to really hurt myself when I fall.

Pain:
Sensory (sight and hearing) - Level 6-8 most of the day. Probably lower because the house was dark and quiet for sick kid.
Muscular - level 5-7 throughout the day.
TN not to bad today.- Level mostly 3 with short periods of 8.

Energy: Exhausted all day. Level ranged between 6-9. Took a 2 1/2 hr nap. Was at level 6 at arising and just got worse from there.

Cognitive: Cannot find words, stutter, keep asking the same questions over and over, forget what I am doing, put things in the wrong places.

~~~
"There is a time for many words, and there is also a time for sleep."
Homer (800 BC - 700 BC), The Odyssey

"The body says what words cannot."
Martha Graham (1893 - 1991)

Dishes on top of the Fridg

I collected the dishes and the bag of snacks the kids had left in the family room while watching TV, brought them to the kitchen, put the snacks in the sink to soak and the dishes on top of the refrigerator. I did not realize my mistakes until I turned to run the water over the snacks.Luckily, the bag of snacks was in a waterproof bag and only had be rinsed off and dried.