Out of whack!

For the past several days I've been awakening in a strange fog, almost a stupor. I can't see clearly and have no balance and, worst of all, I'm dizzy. Over the balance of the day, I can usually even out to the point where I can at least drive, if not walk very far.

Until today, I have been attributing it to the leftover steroids in my system, worsened by middle age. After all, it has been around a decade since my last infusion.

Today, I was replenishing my everyday cubby of prescription meds, when I noticed that I have no bottle for Potassium.

Potassium was the first substance that went completely awry when I started Diovan for the blood pressure. That was a few years ago, and I had the same sort of symptoms back then. Now, it's been about a week, maybe, since I tossed the old bottle and did not replace it. I forgot.

So many meds, so little brain space to store them in!

Now I must wait a few days before I reassess my post-Solumedrol progress.

My current status: Aching, twitching muscles, especially in my arms and thighs. Dizziness and weakness. Bad taste in my mouth, relieved only with a good scrubbing with baking soda (toothpaste tastes bad, too!): I can't even taste chocolate and citrus. Poor overall coordination and emotional depression. Not weepy, but just hopelessness and anxiety constantly playing in the background.

Back in a few days with a new report.

Expecting great things!

pb
Little Pond

Solumedrol, then and now

Before it fades in my memory, I want to mention the Solumedrol drip. Almost a decade has passed since my last infusion, so this trip was new territory.

It is my best guess that infusion centers are a result of insurance giants protecting their bottom line. Since we used to have to chip in a sizeable amount out of pocket, we are not complaining about the ride over and back. Reasonable, I guess, although the nurses were not pleased to learn I was alone after a minor "episode."

A liter of the solution used to infuse over a few hours, done by a very attentive home health care provider. I was amazed to see only a very tiny--maybe 250 l.--amount waiting for me. The nurses said it would take one hour, and that they would check with my doctor. Neuro wanted several hours, but agreed to try the new way.

Immediately, my hand swelled up. In fact, both hands swelled up and got very sore and achy. The discomfort left me wondering if something was going very wrong. I say discomfort, because it is very difficult to detect pain these days. This exacerbation has left me in a mess.

In the meantime, MSers were also taking the cure around me. They seemed comfortable, at least in contrast to the many others who were getting, blood, and God knows whatever else was being dispensed there that day. In fact, I watched one MSer come, receive his infusion, and leave, all in the time it took for the nurses to even find a vein to poke in my arms.

Was I a wimp? Well, in ten years I had gotten older. I also developed hypertension and asthma during that time, so things were very different for this old carcass.

About 20 minutes in, I could hardly stand what was now pain. I moved my body, to see if shifting my weight in the chair would help. This made my head light and my stomach sick, and I reached for the wastebasket. There was so much paper and medical waste, that I thought the overworked nurses didn't need a mess to clean, so I straightened up to sit back. The curtain of sparkles fascinated me a second or two before I realized I was fainting.

"Some help over here, please." I am still proud that I maintained full composure.

Chaos ensued. A call went out for more nurses. A call went out for the Rapid Response Team. And seemingly dozens of hands picked me up and placed me into a lounger--my chair. (Later, I would find little bruises on my arms and legs.) The RRT couldn't find the infusion center and showed up when I was fully stabilized. I was not impressed with the RRT.

Of course: "This never happened before." I knew that was coming, because they had told me, and my neuro after me, that they had never had a problem with Solumedrol.

They resumed the drip and we finished over the next hours. The remaining infusions were two-hour drips over the next two days, and were uncomfortable, but uneventful.

So, did I just get old? I think so, because others breezed through. The nurses watched more carefully, and offered food and drink over the next two days. No more troubles.

Maybe I'm just a wimp, after all.

pb
Little Pond

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.

pb

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.

pb
Little Pond

I want my naps back.

My co-commuters had an intervention, and I no longer share the driving. They say the spasticity is getting scary. I couldn't argue that.

Every day at about one pm I begin drifting off at work. In fact, nearly all my worst errors occur at that time. Funny: I used to be an excellent employee--a top performer and contributor.

I am desperately trying to keep up with family, friends and even fellow bloggers in Facebook. And it's not working.

The working and commuting are making it impossible to find time to go to the doctors, dentists, etc. I miss having my teeth cleaned and am unable to "visit" with the neuro for that "chat" he suggested over the phone a while back. "Unwell" now is part of my regular vocabulary, so please don't ask me how I am doing. I don't want to complain.

While we are still (mostly) paying our bills, my house is falling into disrepair and filth. I miss my blogs and my books; I miss writing. When I get home at night after eleven or more hours of commuting and working, I have no energy for anything except television. Yesterday, I cried over not being able to write.

People with relapsing-remissing Multiple Sclerosis should not be working and travelling long hours. If you are a doctor, and your patient says she or he needs to alleviate the work situation, please cooperate as much as possible.

New York is a horrible state in which to navigate the disability system. I understand that you don't want to get involved, and waste all the time and effort, but this Multiple Sclerosis patient seems to be slipping away, both physically and mentally, and she is trapped.

pb
Little Pond

Weird as hell

A very strange interlude. Has this happened to anyone else?

The latest visit with the neuro was strange from beginning to end and after. First off, he didn't go through the usual test of my eyes, strength, balance, etc.

Then he asked about work. I told him I drive 1 1/2 hours each way to work, that I dislike my workday and that I am tired.

Then he told me "I don't want you driving three hours a day." We then discussed the need to husband my resources and spend less time devoted to getting back and forth to work and more time seeing to my health. He said I should go to human resources and talk to them.

Well my boss told me right off that HR wouldn't do anything without a note from him. I admit I was so messed up by the whole concept of such a change, that it hadn't occurred to me that they would even talk to me at all. I had my husband call the doctor's office.

The office told us that the doctor does not give "notes." He would only sign papers from work.

I contacted HR, who told me they do not provide papers without a note from the doctor. Instant stalemate.

W. T. F? Why on earth would the doctor even tell me to get the ball rolling on all that silliness? The doctor's office then said that the record (whatever that could be) of our visit (what visit? nothing happened.) would be sent to my Primary Care Physician marked as Priority.

That was last week. Where on earth does that leave me?

I can tell you that I went to my boss and told her that I am mystified by all this. I had to assure her that I do not intend to quit working, and that I frankly am looking for a new neuro.

I intend to get a copy of the record of our "visit" and find out exactly what that guy was thinking. Or at least what he put down on paper.

Oh, yes. He also prescribed Valium to talk in small doses all day. My co-commuters immediately raised objections to that. So I am not taking Valium, because I have to share the driving.

It binds me up anyway.

pb

Eight Months of Worry

Have taken their toll on me. I am now resolved to retire and apply on disability in the Summer.

Still, concerns of financial problems cropping up have me wishy washy about the whole thing. We have not cleared away the bills as I had hoped two years ago. The banks have seen to that, and they are getting worse as times go on.

On the bright side I have had a couple of reassurances from Higher Up that things will turn out well, or at least for the best:

The Two Dreams

Seemed like a place in Elmira, but we didn't own it. My mother was part of the dream, as if we were both staying there by ourselves.

Outside in the street a large rig, like a semi was almost clogging the street and parked itself. I remember seeing how huge it was as I stood near it. Then, people came out of it, like a large family. I think they were in the back, but that wasn't really important to the dream.

My mom or I invited them into the small place upstairs. We all crowded into the living room, everyone sitting in different spots. The children were becoming restless and it broke my heart, so I offered them something to eat. My mother looked at me and asked what we thought we were going to feed them. I didn't have an answer, so I went into the kitchen to check.

The place was pretty bereft of cooking utensils, and the fridge had very little. Somehow, I figured I could put together something from the freezer and some buns. But the freezer was all frosted over and the shelves were broken. I asked my mother about it, and she sort of shrugged. We began digging into the rime, which came away easily.

First I found a packet of a little meat, not very fancy, like hunter's venison. I thawed it and threw it into the oven. While I was scrounging for more, some of the children came to me and whined for food. Their mother or mothers pulled them away into the living room.

This again tore my heart, and I shouted after them, trying to console them. "We will manage! No one will go hungry."

In the meantime, the little steak seemed to be enough for four or five people, so we carved it and sent it out. Immediately we found another packet, but probably the last one, in the frost.

When I thawed that one, it was too large for the little pan we found, so we had to spread it out on a cookie sheet.

There would certainly be enough, and we would not need to scrounge for more. I could smell bread, so I guess my mom was baking, too.

At that point, I realized that we were in a "loaves and fishes" situation, and everything was much brighter.

No one would go hungry.

==

Right after that, I found myself in a thrown-together church, meeting in a gymnasium. The church where I was baptised was for the longest while just like that.

We were praying when the person behind me grabbed my arm. When I looked, a lady (apparently someone from my childhood) looked startled and pointed out that she wasn't touching me.

At that moment I was lifted up to the ceiling, with everyone watching. I was estatic, as was the entire congregation. We all praised God, and I floated back down again. No one was frightened by the happening, and we finished out service. Incidentally, I mentioned that the ceiling was acoustic tile, and that they should be replaced. That was just a strange aside.

Afterwards a senior woman came to me, and jokingly told me, "Now maybe you can bless our restroom, because it's a disaster!"

I thought that was a sensible thing to try, so I went upstairs in the back of the gym, and there was indeed a restroom. It was very old, with a huge tub, the sort for just soaking things, like a washer-room tub, for clothes. It was filled to the brim with water, almost overflowing.

Everyone around me was going about their business, the way that athletes do after or before a game. All the women ignored me, because they were busy.

I stared at the brimming tub, and was struck by the notion that there indeed was plenty of water for the blessing.

What it all means is anyones guess, but I woke in a cheery mood.

Now if the Banks were only run by believers in God, we'd be all set. Alas, it is obvious that this is not so. One can only imagine how this is affecting those less fortunate.

And I actually saw a car dealer bragging that they were Pioneers in Sub-Prime Lending!

The evil of it just gives me the willies.

pb