Sunday, February 28, 2010

A few days into the treatment

Hands are still a little bit wooden, but the Solumedrol is doing its thing. Of course, I feel like I've been tossed down a rocky hill. But it is a familiar sensation, and I know it means that everything is working.

It all finally got rolling on Tuesday. MammaDog brought me to the neuro's, where we proceded to drive the poor man crazy in stereo. We can work up quite a repetory together.

I had been keeping him abreast of the rapid decline I was experiencing over the past few weeks. His reponse was immediate this time:

Doctor's orders to be off work until July 6. Why that exact date, I can't imagine.

Prescription for a three day infusion of Solumedrol, followed by a four day taper of Prednisone.

Re-evaluation in April.

An MRI and a huge battery of blood tests for CBC, Comprehensive Metabolic, Free T4 and TSH, all routine. I will go for the blood tests this week, close to home.

The steriods are depleting me of stamina, so I am no venturing far. Also, my sight always seems to go out during the treatments.

If it were not for the earthquake in Chile, I would have nothing to worry about for a while. As it stands, my sister and BIL's family, as well as our foster son, Brian Alegria, are all beyond our reach and ability to contact. I worried myself to exhaustion yesterday, and am leaving it all in the hands of their local and authorities. They are experts in earthquakes, and sounded very confident in their ability to recover. The death tolls are relatively low.

My foster son is a slum dweller, and they reside higher over the coast in a hilltop village, sort of. One can only hope that they simply had less to crash down on them. As for the Tapias, and their extended family, we can only join our prayers as a clan.

When I have more energy, I will have more news.

Thanks to all for your prayers and well wishes.


Thursday, February 11, 2010

For God's Sake, Get a Grip!

Today is Thursday, and I am home because of a furlough day. Actually, I was looking forward to this one, because I was to have seen my Neuro--who will remain nameless for now.

Due to 1 1/2 inches of snow (3.81 cm) we were canceled. Yep, that's right. Not even enough snow to shovel, only to sweep, was enough to cancel my appointment.

A little background for anyone just tripping somehow on this blog:

Diagnosed with MS in 1995 (I think. Need to ask my husband RJ to verify.) At that time I was unceremoniously dropped into a hospital bed after my legs went numb and my sight got fuzzy. From that, I recovered and returned to work in five days. It was only the first of many Solumedrol infusions over the next decade or so.

I continued to work, because my supervisors and coworkers made it plain that I was not only useful, but absolutely necessary for the office to function properly. For which I was thankful nearly every day of the next 13 1/2 years. Able to continue to contribute, despite the lack of elevator or nearby ladies' room, even though my mobility and continence were both compromised. I worked because I preferred to work.

Fast forward to March 2009:

Facing certain layoff, those of us who couldn't afford to accept it, put in applications for jobs in the new CNY order of things. At the time we were already forced to accept five days unpaid layoff each quarter--although that stopped in the Fall of 2009.

By September 2009, I was already experiencing loss of feeling or numbness in my legs, and a very strange double vision in my right eye. The vision thing was weird because I have always experienced most of the MS involvement on my left side. It lasted a few hours.

But I was out in Binghamton and my doctor, who for now will remain nameless, was not to be reached. His substitute told me it was probably an exacerbation and I should see an eye doctor, "if it would make me feel better." Boy, did I feel sheepish. Still do.

In December 2009, my neuro, who for now will remain nameless, quickly, and without examining me, decided I was "distraught" and prescribed a tranquilizer. (Now I felt like an idiot!) It didn't matter that I told him I hate, hate, hated the long drives to Binghamton, and felt like I was losing ground. He decided I was hysterical and needed to calm down.

He also insisted I shouldn't drive and should go to the Human Resources and tell them so:
(See below for how well THAT worked out for me.)

By January 2010, I was sick enough to finally send the jerk a long letter detailing just exactly what I was going through every single work day.

These include (but are not limited to):

  • Numbness in my chin and nose, and around my eyes.
  • Numbness and clumsiness in both hands.
  • Numbness up to, but not quite including, my hips.
  • Loss of balance.
  • Loss of hearing in my left ear.
  • Loss of clarity of vision, sometime more in my left eye, but also somewhat in my right.
  • The worst emotional roller-coaster feeling I have EVER experienced in the last 14 years.
  • Extreme, unremitting fatigue. I am so tired, I cannot even sleep anymore, not without exhausting dreams of working, fighting, driving--well, you know--anxiety nightmares. Every single night.
  • Almost total bowel incontinence: including the inability to empty them on command.
  • Bladder incontinence, compounded by intermittent inability to urinate on the toilet.
Without going into disgusting detail of how I am managing all this while commuting/working 11 to 13 hours, five days a week, I can simply assure you that:

I live in terror of a huge bowel and/or bladder accident. I do wear protection and I keep doggie bags with me. You know, the ones I use to pick up Ellie's messes. I use a lot of them.

Much of the time I do not make it to the ladies room, and must clean up after myself. I'll bet the janitors are really beginning to wonder what the hell is going on.

I can count on at least one bladder accident a day that is caused by the 1 1/2 hour commute alone.

The ladies' room is farther away than it ever has been in my working career: that is to say 42 years. I simply do not make it. A lot.

Can anyone tell me if this sounds like I should be getting some sort of cooperation for someone, anyone, say, my neurologist?

The difficulties I have faced have left me depressed. Frankly, I have too many bills to pay to push for total disability. I need to work.

I need to work and I want to work near home. I was some sort of accomodation from stinking Gannett, for whom I have slaved for over 15 years. Even at my sickest, I rarely used sick days. I almost never use up my personal and vacation days.

I like to work. I want to work. I need to work.

Why the hell can't I get any help with this?

Because of yesterday's debacle, I have nothing to report to anyone. I took an unauthorized personal day to visit the neuro, and he couldn't be bothered to go to work. Because of 1 1/2" of snow (3.81 cm)!!!

I have never felt so trapped in my life.

Except for those weeks in Spain when they wouldn't return my passport, and wouldn't grant me the visa I needed to stay there, either. Back then, I had friends in somewhat high places, who pulled strings and got me both.

No such friends now, just every Catch-22 imaginable. And a neuro who strikes me as something less than fully competent, and for now remains nameless.

And I feel so unwell.

Little Pond