I'll survive

Banish any crazy thoughts of renal failure.


Three days on a very expensive antibiotic is beginning to clear things up a bit.  Unfortunately, such a long time before seeing the doctor has left me in pain for a while to come.


A huge copay and a long recovery period should teach me not to self diagnose next time.  Without the copay, Levaquin costs over $400 for 14 horse pills.  And the inflammation will take weeks to go away.


How's an MSer supposed to know what went wrong?  I thought I might have pulled a back muscle, so I waited for it to subside on its own.  And it did subside.  The remaining pain stayed along for the ride.


Not all better, but at least on the mend.


Oh, and having a new grandson (7 lbs, 2.6 oz and 20.5 inches long) (3.25 kilos and 52.07 cm) born just yesterday also eases the pain.


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Little Pond

Something is wrong.

You know, if I had real feeling in my body, I would almost guess some sort of UTI.  But I used those little orange pills and get no relief.  Is it my left kidney?  Can't be a left ovary, because that's been gone for years.


This is a weird pain in my lower back.  Enough pain to make me writhe if I need to bend over for anything.  Pain anywhere below the belt is odd.  This is not a Multiple Sclerosis thing at all.  It's almost comical, the way I trigger it, just to have some sort of feeling below the belly button.  Or actually right about at belly button level, only in the back.


It's even warm in just one teensy spot on my back, and there's no knot for the muscles.  Fascinating.


(Only an MSer could play with pain out of sheer enjoyment.  I HAVE PAIN.  YIPPEE!)


I will call my family practitioner Monday morning.


Weird.


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Little Pond

Christmas time is tired time

Bet this looks familiar to many of you.  The baby has moved the Christmas Creche figurines, one by one.  She watches as I line them up for her to see, telling about each one.  When we are done, every piece except the manger and Baby Jesus will be laid out on the cocktail table.


Fortunately, VM will turn her attention to HuggaMutt.  And I will return the figures to their rightful place.  A visit from the baby consists of my watching her and letting her entertain me with her wanderings.


Happy Holidays to you all.


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Little Pond

In the Merry Mood

Just had to go up, one more time.

Everything was already decorated, but I wanted to give some old stocking hangers to my daughter.  I found them in the attic, alongside  a box of Christmas angels.  Had just promised myself I wouldn't put up any more stuff, but I couldn't resist.


Instead of a simple bag of stocking hangers, I descended the ladder carrying a small box with the bag of hangers, an angel ornament, and my Holy Family tree topper.


Don't know how I did it, but that little box caused me to trip on the attic pull-down ladder.  In a split second, I knew it was either the box or me.  One or the other would have to crash.  I let go of the box and grabbed for the stairs' mechanism.  Crash went the box, and I don't quite remember what happened to me.


I now have a huge, scraping bruise on my left leg, some strange achiness around my right ankle, and a certain amount of skin off both hands.  I can hardly move today, and my limp is worse than ever.  Fortunately, with the MS, I don't really have much pain.


Worst of all:  two stocking hangers broken beyond repair, and Baby Jesus flung out of his mother's arms, and she out of St. Joseph's embrace.  Baby Jesus is missing a hand, and Mary will need to be reglued.  Only the angel ornament survived the wreck unscathed.


Wasn't really worth the trip.


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Little Pond

No one else

A week later, and I still am fighting the snots.  And I still am the only person in the vicinity with a cold. 


And let me tell you, dusty stuff stowed away since last year doesn't help.  One good thing:  when I couldn't take the sneezing and hacking, I cut the decorating short.


Result?  A few boxes left unopened, and a tastefully understated living room, still ready for Christmas.


And tons less to be destroyed by a very busy, overly curious toddler.  Picture taken at MamaDog's home.


Enjoy the season, everyone!


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Little Pond

Helluva Head Cold

Holy moley.  Fighting a head cold since last Wednesday, and only now beginning to emerge from the fog.  GrandGirlie had a fever and runny nose three days before, and I am the only one who caught it.


Now I only have a stuffy, runny nose and chest congestion.  Soooo much better than I've felt in days.  I juggled  a few cold remedies, depending on the time of day or night, but in the end, it was better to just deal with the darned cold, than to be stupid and foggy and debilitated.


Never mind a cure for MS.  When are we going to find a cure for the Common Cold?


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Little Pond

Feeling Better?

Apparently "feeling better" is not actually being better.  I am reminded of my training in Recovery.  "Feelings are not facts!"  Generally this is a great mantra for people who feel as if they are going mad.  Unfortunately, it works both ways.


I visited my new Neuro today, who I will refer to as Ms. Neuro.  Not that I've never had a female before.  However, this is a lady who seems competent and self assured.  While things are not always as they seem--see above quote--I left the appointment a little more assured of subsequent proper monitoring.


At no point did she sound convinced that I am healing.  I know I am healing because my knees hurt like hell.  In fact, they hurt like never before.  Frankly, to have my knees feeling anything whatsoever is a comfort.  After a few walking demonstrations, Ms. Neuro began to explain some of the newer drugs available to improve my gait, as she said.  No links until I know more.


I also feel as though my sight returned.  Recall that I had an episode of double vision in September of 2009.  My sight was sort of crummy for a while.  This past spring an MRI done specifically to follow up on that showed a great deal of correction. 


Feelings are not facts.  Ms. Neuro determined that I am experiencing some sort of weakness in the side vision of both eyes, that creates double vision.  Dumbass that I am, I simply said, "Doesn't everybody?"  I was tersely given to understand that no, it is not normal.


Long story short:  There is to be no--none--whatsoever--preparations for Tday.  Husband RJ is incredulous, and suggests that Ms. Neuro can't possibly understand our situation.  We must have Tday at our house.


B---s---t!  I agree with Ms. Neuro, and am beginning to wonder about ole RJ.  Her exact prescription is that we go to my daughter's place, bringing nothing that requires homemaking, and that someone else drive me to and from the party.  Apparently, she detects a certain amount of SuperWoman complex, and wants to knock me down a few.


Funny thing is I agree with her.  Wouldn't it be nice to enjoy a couple glasses of wine, sit back and watch the mob work without me, and go home to sleep in a tryptophan and alcohol induced coma?


Damn.  I'm feeling better already.


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Little Pond

Sorry about the visual.

This week I remembered why I shave you-know-where year round.  It's getting colder here in the Southern Tier of Upstate New York, and I'm inclined to stop shaving legs and underarms.  But anyone who must wear incontinent or feminine protection can tell you what happened.


I have to feel clean.  Clean, clean, clean!  That's one of the things that makes living with a smoker so very difficult.  Dusting and vacuuming are constant and can occur at the drop of an ash.  As for the physical cleanliness, I have creams and powders for my face, body, and especially my feet.


All unscented and without alcohol, thank you very much.  And they can't be aerosols, either, because that would precipitate an asthmatic incident.


Now that I'm on disability, I have plenty of time to wash, shower, touch up with a washcloth, et cetera, et cetera, et cetera.  I also can return to those items of clothing that I couldn't wear to work.


The nicest being those lovely undies from Victoria's Secret.  I have a perfectly prosaic reason for frequenting Vickie's.  If you've ever seen my photos in the other Blogger blogs, the answer is obvious.  To say that this kid is not buxom is an understatement.  Vickie's puts out an enormous array of sizes, and you get to try them on, assisted by highly skilled salespersons.  It took decades, but VS finally began to put out bras for people like me, whose incidentals are a little bigger than lentils.


I love the incredible variety of their panties, too, and have a whole drawer of the darned things.  Some VS undies are very abbreviated, so much so that one can barely find enough material to attach the sticky surface of my intimate protection.  And I can just pass by the gorgeous layouts--all attractively priced!--of thongs.


Now, I don't go out for more than 1-2 hours at a time, for the same reason I wear intimate protection.  Let me tell you, even one hour is way, way, way to much time when one's nether curls are stuck to a pad and being cruelly yanked by any movement whatsoever over the course of grocery shopping or doctor's visits.


Even with the accumulated nerve damage done by 15 years of RRMS, the exquisite discomfort of those tiny hair-pulls are enough to have this person climbing the walls,  unassisted by salesperson or ladder.  It's enough to send me speeding home to a fast shower, and yes, some very gingerly barbering of a very delicate area.  


Please, someone tell me it isn't just me.


Oh, and sorry for the visuals.


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Little Pond

It's safe to go back to Little Pond

We had an ugly hiatus for a while, after a nasty malware was stuck to Pats Pond.

I cleaned it up and we seem to be back in business.

Rest assured, I will watch carefully for those weird comments that seem to be non-sequitors.

What the frig? Who has nothing but time and the will to ruin other people's sites?

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Little Pond

Where's the logic?

What part of "disabled" and "fatigue" is hard to understand?


The amount of paperwork to get here was literally staggering.  I was reeling under the complexity and volume of it all.  Looks like we are settled for a short while, until the next request for medical update.


Now my neighbors want me to doggy-sit for them.  The poor old muck is clearly dying of arthritis and poorly-set broken bones that were hidden by the arthritis or whatever.  This dog needs to be carried everywhere, so it's good thing it weighs only about eight pounds, or about 3.5 kilos.


I still have my granddog three days a week.  The two critters are now in competition for snacks and attention.  Three visits a day for the little rat, for the next three weeks, and Ellie is three days on, four days off.  Husband RJ is working full time, and so expects me to handle it.  He was the one who couldn't say no.  


Now for the kicker:  the dog's owners are both retired on disability, and travel often.  They said (to RJ) that their dog doesn't like the regular dog sitter any more.


I wish my disability gave me leave to travel all around.  I can't go two hours away, or even more than two hours anywhere close.  Somehow I got the wrong disability.


Right?


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Little Pond

Blessed relief

Say hello to the e-cigarettes!

 With the click of a mouse, we ushered in a new century.  Now there is no excuse to smoke around us asthmatics.  E-cigarettes deliver a dose of nicotine, and the soothing relief of the need to puff.

 My sister introduced us during a visit, and we purchased a starter kit for Husband RJ.  He favors the menthol cigarettes, but prefers the flavored e-cigs. 

 The house is cleaner already.  Since it is summer, RJ takes the real deal on the porch.  First time ever, although this may be temporary with the frigid winters we experience in Upstate New York.

 I'll take whatever I can get, and my own lungs feel better these days.

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Little Pond

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

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.

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Little Pond.

Another brother down.

Please visit Little Pond today and follow the links in the top two posts. We need to support those who care for us when we get beyond medical help.

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Little Pond

Rinse and repeat

Wow. It's deja vue all over again, as they say. Monday I finished the latest round of doctors' visits and MRI--this time with a complete spinal scan.

As a matter of course I went to the neuro's to inquire if paperwork went out to Aetna for the temporary disability time. At the moment I am required to return to work Monday, April 18.

Not feeling great, but really, I went right back to work after the first attack, some fifteen years ago. Perhaps the intervening years have taken their toll on my ability to bounce back.

As has already happened twice before, the office reacted with shock when I announce that I was going back to work on Monday. Voiced the same indignation over the insurance company wanting further documentation. And, of course, had not sent in any of the papers that I had filled and given to them to send along to Aetna.

Just like the last time. If I were feeling just a tad better, I would return to work on Monday and tell the neuro (and his office) to screw himself. I'm tired of playing my own disability caseworker.

Although I must admit, I'm becoming a pretty good one. Lots of practice, you know.

Maybe I should consider a change of careers.

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Little Pond

A working-over?

So now I have been poked, prodded, stuck, and a few things I can't describe in any sort of good taste. In fact, who knew all the places they can tack-on electrodes?

At this point, I have healed from the bruising left after the three Solumedrol infusions. And I have gotten over the rashes left by the tapes used to secure various medically-invasive implements. The worst one being the goop used to secure and maintain the connection needed for the electrodes attached to my scalp. Again: who knew?

And lets not forget the ringing in the ears. Two different tones, apparently one for each side. It wasn't there, I don't think, before all this frigging loveliness.

Ahem. Some of the adhesive left only a minor spot or two that healed in just a day or so, but the electrode in the hair, well, that is still a sore/hot spot in my scalp. Sort of like those hot spots fleas leave on a dog.

Without going into the nasty details, I am only left with a Urinary Tract Infection, caused by the tubing used to pump me full of sterile water. Of course, I have a mild UTI almost all the time, anyway, from self-catheterizing, but the laboratories caught this one. Now I am on Amoxicillin for the next ten days.

Last, but certainly not least, is the after effects of the MRI: an entirely new one now scheduled for next week.

We are now officially keeping the Arnot Ogden Medical Center in business, single-handedly. The bills for the copays, etc, are piling up.

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Little Pond

"Normal" MRI

Don't want to say too much about the MRI results just yet, because the neuro hasn't seen them; he's still in Mexico.

"There are 2 punctate foci of high signal in the left frontal perventricular
white matter on the FLAIR sequence of doubtful significance, and there is
asymmetry in CSF space about the IACs left larger than right, a normal
variant."

Whatever that means. So you can see I really need to discuss it with the neuro. Anyway, at best this means that there was no new damage! At worst: I would have to go in for another MRI. Pray it's the first, please.

So lets see where I stand:

Two calls and two letters from Aetna, and I am still scheduled to return to work the 29th. Fine, I guess, although my neuro, if he were able to be reached, would probably not like that at all, since he prescribes three months at home.

Papers were not sent to Aetna with the doctor's orders until last Friday. See post below. The doctor's orders are faxed, but nothing from Aetna.

I called the uro only to find that "no tests, no appointments" is the report from them. This was puzzling, since I know he told me we would have some sort of followup. I said as much and thanked the person. Less than an hour later I get a frantic message on the machine that I should call back immediately.

Figures. Of course there are not only tests, but followup appointments and more tests, enough to fill next week with a lot of running around.

Of course. Wonder if I will be hearing of their firing soon, too?

So this morning I called Aetna yet again and told them I have a whole week of appointments scheduled and really can't go back to work yet. I am now in Farmville, rearranging my crops and livestock, while waiting for the inevitable callback.

You know, I would heal an awful lot faster if I weren't always so knotted up in nerves over whatever paperwork wasn't getting done by whoever. Many times I have had to do all the running, faxing, and calling myself.

Another thing: I am a very conscientious worker who not only gets work done, but has the courtesy to follow up immediately with whomever I promised the work. I see none of this in any of these offices.

Doesn't anyone do their job well anymore?

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Little Pond

After a couple of days to sink in...

Friday's events are becoming real. They were so dreamlike, I needed the time to assimilate them.

The lady in the neuro's office is gone. While my neuro is on vacation for a month, the parent company--a local medical center--fired her.

My mother and daughters all wanted the results to the MRI. Usually I wait to hear from my neuro on that, because they have a better idea what it will actually mean, and I won't get hysterical or so depressed.

This time, however, everyone was waiting, so I called the neuro office. The phone rang a very, very long time, and was finally answered by a shaky-sounding fellow who mostly handles the ortho's business. He informed me that the lady was gone, but he would dig up the results.

The results were negative. Huh? What's that mean? It said it was "normal." (Much more on that later.)

At that point, I panicked. But I am not well, and my work insurance will cancel, and I will need to return to work, and I will need to travel three hours every day again. Et cetera.

The nice man couldn't help me and I could hear the phones ringing in the background as he told me that the lady who processed the neuro's stuff was now gone, fired in the early part of the week. Stunned, I thanked him and hung up the phone.

It was a pretty fair bet that they didn't file the papers I sent them on Monday. The fired lady took her time about everything, usually smiling and telling me they would be fine, sweetie.

Yes, sweetie. I called my family and informed them that the MRI was normal. My younger daughter told me to call my GP and ask him what we should do.

Duh. I never thought of that.

I called the GP, who immediately--and I do mean immediately--called back and told me to ride the neuro's office until I had proof that those papers went out. The GP couldn't help me at all, because it would all cycle back to the neuro.

Well, I went in person to the neuro office, and found the poor fellow rummaging through files, with a phone in one ear, and the other phones ringing incessantly, and people still waiting for the ortho, lined up nicely in the waiting room.

After waiting until I was sure he took care of the others, I approached him again and explained my troubles. It seemed to me that we simply needed to find out if papers were faxed to Aetna.

He brightened right up and began rummaging again. He took care of the waiting ortho patients, and finally unlocked the neuro's office--remember how the neuro had gone on vacation-- and came back empty handed. He began to look desperate, then wandered out to the "back room" and came back with my folder.

He actually told me I needed to look at the folder and tell him what was significant! There, right on top, were the papers that needed to be sent. I sighed with relief and pointed them out to him. He shook his head and said, "If they had gone out, there would be a notation on it."

We looked them over, page by page, and ultimately found that the last paper needed to be signed by me.

I signed the paper, and he faxed them to Aetna on the spot, returned copies to me. Those papers included the "office notes" that should have been sent weeks ago. The nice man marked a paragraph for Aetna that gave the time period that was needed for my recovery: three months.

Mystery solved; immediate crisis averted. I thanked him profusely.

Now I have to work on the uro's office. They were supposed to call me with a date for my tests.

That was last week, so here we go again.

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Little Pond

Overdid.

How do you like my new header?

Thanks to my BlogSis

(DigitalKaren.com)

for a new, much fresher look!

Yesterday, I was wiped out after the MRI. No real exercise, no real anything, but I was exhausted. Fell asleep in front of the television that evening.

Today I tried my usual round of groceries.

I started at Walmart, "cherry-picking" the best prices on our weekly stuff. Then I moved to Tops, already noticeably flagging.

When I finished Tops, I knew I needed to hit Weis for 5-6 items not available elsewhere. I finished the shopping and went home.

Then I found that I still needed to run the bank errands.

All in all, some four hours of running. After all, what else did I have planned? Anything not finished would need to be done Friday, likely in the rain.

I can barely move right now, and am blogging because I don't have the energy to do anything else.

I won't do that again. Four hours is way too much for me, these days.

Well, maybe better days are coming.

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Little Pond

Let the testing begin!

MRI today at 2:30. I am apprehensive enough to lose sleep over it, but not enough to demand an Open MRI. I will meditate and pray during the ordeal.

Neuro Lab on the 30th for hearing and vision tests.

Still waiting on Elmira Urology appointment. I don't want to see the numbnuts out in Corning. They were worse than useless the last time. We actually wound up having the Neuros write prescriptions for them, because they refused! My suspicions are that Elmira Uro will be more of the same, but at least we can get some tests out of them.

Will follow-up with the Uros after I survive the MRI.

Anxiety is growing. The bad economy, lack of local advertising, and who knows what else, all promise no good for local employment.

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Little Pond

Back in whack

So here's the p00p:

Yesterday I noticed that I had inadvertently stopped taking the Potassium supplements need to counteract the diurected needed to regulate my blood pressure. (That was a trip!)

And today I can already see better and am much more awake. My blood pressure is normal and I ran right through the morning paper, the sudoku and the crossword. Admittedly, those are the easier versions that get harder as the week wears on.

Unfortunately, I still wobble. A lot.

Aetna tells me I am covered until March 28th. At the same time, they requested the dates for 1: the MRI, 2: the bladder tests, and 3: the next neuro visit. A quick trip to Arnot Health Services (neuro) verified that the next visit is April 26th. The two scans/tests are not yet set, because our insurance requires pre-approval.

Where does that leave me? Assuming the tests are approved, we should be then covered until the neuro visit in later April.

I assume nothing.

Am I ready to return to work?

I would say "yes" if I were working here in Elmira. A resounding "no" if I must go to Binghamton. For the first time in a year, I am getting about 8-9 hours of sleep, albeit interrupted by trips to the bathroom. And that includes a short nap at midday.

The bottom line is this: if I am not covered by Aetna, I will definitely return to work on the 29th of March, even if I must return to Binghamton. We are only one paycheck away from financial disaster--the crash and subsequent Bank shenanigans have guranteed that. I had been merrily paying down and eliminating bills before then. Then one after another, they ground to a near halt, as the interest rates rose to unimaginable levels, at least for someone who never missed a payment, had an excellent rating, etc.

It doesn't take a neurologist to figure out what triggered this last exacerbation. Eleven hour days of commuting and working await me, but my job is in Binghamton, and they are holding for me. And the bills still need to be paid.

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Little Pond

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!

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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.

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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.

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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.

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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.

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Little Pond