Saturday, May 22, 2010

It finally hit me at 4AM.

This exacerbation is not going away any time soon.

A dull ache from ear to ear at the back of my head was the little birdie who told me so.

In early July I will see the neuro, but I don't know if I should wait that long. After all, Solumedrol therapy is unpleasant this time of year, but the summer is shot anyhow.

Time to seek intermediate financial help, too. If I'm lucky, that is. Maybe a stopgap loan? I don't know.

There goes the 401K.

Little Pond

Tuesday, May 18, 2010

A new process begins...


I've finally accepted that I cannot work like this. My neuro has sent the word to my family doctor that he recommends indefinite disability status. My gut is so nervous about the future that I feel awful every day. Multiple Sclerosis symptoms are now pretty constant: two different ringtones in my ears, along with very poor hearing in the left; numbness and dysaesthesia in both legs to the thighs and no real balance to speak of; clumsy numbness in both hands and my face; visual acuity comes and goes. On top of that, asthma is taking its usual toll this time of year.

I'm a terrible driver and use the car as little as possible. My home is sort of a part-time prison, only I have no energy to fix it up. Tidying and sweeping takes most of my energy every day.

I won't go into detail about the incontinence, except to affirm that self-catheterization is a wonderful thing. That's only half of that story.

The bills are currently being paid by my employer's insurance, but that will come to a halt in a few weeks.

Today I go online to prepare for a meeting with Social Security. The information and documents are all collected, and I've been dreading the meeting tomorrow for over a week. Husband RJ wants to come along, but I see no reason for it, except that I am chronically fatigued. As often as that leaves me feeling faint, I haven't fainted since the February Solumedrol infusion. I refuse to be a fainting Victorian lady; I don't even own a corset, not even a cute, sexy one.

The bills must be paid at all costs. Literally.

This time "all costs" cannot include working, as I have since my diagnosis fifteen years ago.

Pretty pickle, isn't it?

Little Pond

Tuesday, May 04, 2010

Attitude Adjustment

I just got off the phone with my mother in the next state. She told me that I will need time to adjust to my situation: Time to get all the paperwork through. Time to work out all the financial details. Time to adjust to being disabled and home.

And finally, time to learn how to live with the man I married.

Yep. Poor Husband RJ is now sort of an opponent. He's always in the bathroom when I need to go. He takes up too much room in the bed. He hogs the computer. His smoking bothers my asthma. All the gardening, indoors and out, keeps the floors in a constant mess.

The poor guy can no longer manage to mow the yard in one go. The mower messes with the hearing in my MS-damaged hearing. All the time now, since he takes it in little batches.

And this should sound familiar to fellow MSers: every day is a battle over the climate control. He likes it too hot in the winter and too cold in the summer.

For me, that is. The air conditioning kicks up neuralgia spots in my head and neck. Even with the compromise of 73 degrees max and 71 minimum, the blowing is annoying both to my hearing and the neuralgia. It was a tad easier in the winter, because I would bundle up or strip down. I sort of do that in the summer, too.

Now I treasure the times he's at work.

And feel guilty about that, too.

Little Pond

Saturday, May 01, 2010

Fifteen years ago.

March 1995. I began to notice a strange feeling in my left foot, around the toes. They felt pinched, or wet or something.

I was working in an audiovisual company on the East side of town in a largely unheated building. I bundled up a little more, glad that I worked nights in a more comfortable place. The Black Monday crash of the 80's had ruined my career as an editor, so I was working two part time jobs.

May 1995. We were pasteup artists goofing around with the Exacto knives. I forget what made me think of it, but I asked my coworker to stab me in the leg. She very cautiously did so, and shortly announced that she had drawn blood. At the same time, my sight was deteriorating, to the point where I could not discern the difference between a raw, unsharpened photo and its properly processed counterpart.

My general practitioner tested my reactions with a pin. He looked serious and was uncharacteristically quiet. I was sent to the hospital for a neurological exam. During that exam, done with electrodes and all the fixings, the neuro announced that I was being sent to another hospital for an MRI. I knew about MRI's from my work with educational audiovisuals.

Half a day later I was flat on my back in the hospital, having my first Solumedrol Drip. A very relieved neuro told me I did not have Guillein-Barre, but I did have Multiple Sclerosis. Years later I would remember that a college buddy had something that made her walk stiffly and feel constantly tired.

Memorial Day weekend 1995 was spent in the hospital. I insisted on returning to work in five days. The neuro was astounded, but I had to return to my night job, because they were considering me for a full time, benefited position. I needed the money and the benefits.

Fifteen years ago this month, I began my journey with Multiple Sclerosis. This year I am fighting to regain normalcy, but it doesn't look good. It has been over two months since the Solumedrol drip, and I am only partly recovered. Never before have I been on a long term disability.

What a difference fifteen years makes.

Little Pond.