My latest therapy

Not that I have much choice.  When Ellie is visiting, we will go out every day, more often than not to the Chemung River.  In bad weather, we go to Elmira College, Eldridge Park or even something closer like Riverview Park in Elmira Downtown.

I am feeling better every day, but there is so much damage that seems permanent this time around.  The loss of hearing is worse, the ringing in the ears is the worst I've ever seen (and I've seen some tough stuff), weakness on the left side is worrisome.  And over all of it is a killer fatigue.

But I have come back before, and I will again.  It took time, and this will, too.

I will survive.

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Little Pond

Too Tall?

It's the big day.  Neuro followup visit.


I have a huge packet of forms for them to fax to Aetna.  Gannett insists I apply for longterm coverage.  Apparently, they--and only they--get to decide whether or not I retire.


Here is my list of observances.  I hate to call them complaints:

• half deaf, left side; tinnitus right side
• numbness up to knees, but some feeling in toes
• clumsy hands
• nap every afternoon, but poor sleep at night
• no strength in arms.  Just enough to pick up the baby!
• poor balance.  I feel "too tall" for my height, for goodness sakes.
• forgetful and stupid
• too tired to walk more than 20 mins
• can't style hair (hair or arms?  your call)
• incontinent

Let's see how it all shakes out.

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Little Pond

"It just exploded!"

I'm back from Walmart, ready to replace the shower head.

This morning, Husband RJ came downstairs mumbling about the shower head, how it was spraying all over the place.  I had just "repaired" it with electrical tape, hoping to delay a trip out for a new one.

While not exactly admitting to damaging the thing, he did say he dropped it onto the side of the bathtub at one time.  The attachement was cracked right at the coupling to the hose.

No problem,  I simply taped it securely, making it useful until we could get to Walmart for a new one.

So why is this posted to the MS Companion?

Well, I forgot.

I forgot that as an MSer, I shower in only slightly warm water.  Many women I know will also shower in slightly warm water.  Just warm enough to be comfortable.  The head gave me no problem.

I forgot that Husband RJ fills the entire upstairs with fog when he showers.

He apparently turned the hot on fully, then adjusted the temperature with the cold water.  Then he pulled the diverter.  Apparently the shower head lifted itself out of its fixture and exploded on its way down to the floor of the tub!  The remaining hose snaked and swirled all over the stall, squirting in every direction.

God I wish I had been there to see it all!

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Little Pond

The Eagle Has Landed

We are now on Disability.  More details later.  At present, I am weathering the heat wave.

Out to the river before 8 AM.  Resting in a cooled house most of the day.  I hope to go to the grocery store later, when we are expecting rain.

Yesterday, I went for groceries at 6AM.  Good thing, too.  It was sweltering and suffocating both.

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Little Pond

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.

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Little Pond

A new process begins...

So.

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?

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Little Pond

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.

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Little Pond