I Can’t Hear You

You go along, working on being strong but conserving your strength (LOL) like the Doctors tell you and then…….Reality hits like a sledge hammer.

Paresthesias  abound.  You try to ignore them.  You go about your business as though nothing is wrong and then you finally succumb to whimpering and crying because this particular one is unusual in its tenacity to hang on to you as though there is no one else in the world to bother.

Ianded up in the hospital on morphine for two days.   The Doctors there scratched their heads trying to figure out what was the cause of it.   They weren’t neurologists.   My Neuro was an hour away unaware of what was happening, and beside that, he had no visiting privileges to that hospital.

They put me on morphine.  That was good because it quieted things down a bit.   Then I could see that look in their eyes of “what do we do next?”

I told them over and over, “call my neurologist”.  They said they would call the neurologist on call.   Meanwhile, they drew blood or tried to.  After about an hour of trying, they decided to put a PICC line in me.  Oh great!  More to deal with!  Off to Interventional Radiology I went.

After that ordeal, it was decided to do an MRI of the spine.  Great!  It’s their money.  I’m just a patient.  I don’t know what is wrong with me!  Wrong!  I do but I don’t.

The Doctors came back with the Radiology report in hand and indicated to me that they were still unsure.  It could be this or that and by the way, did you know, blah blah blah?

The next day they told me the Neurologist was just outside my room.  Great, I thought.  Now we will get these other Doctors to understand the nature of having Multiple Sclerosis.

He came in after consulting with the other Doctors and said to me, “I hear you have back pain!”  I said,

                “What?”

                “You have back pain and we will leave you on morphine for the time being until we get more information.  Also, I have ordered a heating pad for you.  See if that helps.”

                “But Doctor.” I said.  He interrupted me and said,

                “Speak louder, I can’t hear you”. I realized then that this man should have retired years ago.  He didn’t understand me and I couldn’t understand him either with his thick accent.

I looked at my husband and he said “Useless.”  That’s my husband.  Comes straight to the point with one sentence.

My assigned nurse came down with a strange looking box and plugged it.  She handed me the pad part and told me to lean back on it as she held it in place.

I sat there dumbfounded.  I realized that this hospital or at least the neurologist assigned to me knew very little about MS.  They knew about the disease but didn’t know how to treat it.

I knew that either I was having an exacerbation of MS or that something was wrong with my lower spine.  What was wrong with my lower spine could be a lesion from MS or it could be normal wear and tear.

I decided to sleep with the pad because the heat felt good and deal with the issues that were pounding my brain trying to get a voice out.  I quieted the voices down and told them later.  My husband just sat there quietly, but when everyone he said,

“We are never coming here again!”  I nodded.

The following day, after waiting more than 5 hours for my GP to arrive, we decided to leave AMA (against medical advice).  On the way out, we ran into my doctor.  We explained to her why were leaving.  She told me she was going to refer me to a Rehab Facility.

I sit here now talking to you through my words at 5:02 a.m.  I slept a few hours earlier and now I’m wide awake.

MY TAKE ON THIS:

Don’t despair if you are in crisis and taken to a hospital. Deal with it, get what you need such as pain meds and leave.  You can’t really fault the hospital for not knowing how to deal with you.  The only thing they know how to do is run diagnostics on you and treat the symptoms.  For that matter, so would a hospital with knowledge of Multiple Sclerosis do the same thing.  Run diagnostics and treat the symptoms.

What makes a difference in hospitals is the neurologists they have on call.  I could have waited the second day and asked to see a different neurologist, however; I was at a point in my pain frustration that all I wanted to do was go home and deal with it there until I saw my own neurologist.

Turn this bad experience and find something laughable about it.  We did.  My husband and I laughed all the way home after bitching about what happened.  It was a fiasco.  The only good thing about it was having morphine for two days.

Sedate me please!!!

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Call Me A Jerk

Hello my dear friends,

Today and the previous two days my myoclonic jerks and/or dystonia have been acting up.  Just call me a jerk.

UnknownI’ve been so spasmodic that my husband’s face was creased with worry.  He demanded that I go back to bed.  It was a good thing to do.  I was slipping and sliding in my chair because I could not control the jerks that propelled me forward inch by inch towards the end of the chair, and eventually, I would be on the floor writhing in agony.

You see, I also have a form of Dystonia.  I forget which one my Neurologist told me, but he rattled it off on my last visit.  He said, “You know that you have?????? dystonia, don’t you?”  I was surprised.  He said, “not only do you have MS but you have a secondary disease of ??? dystonia.”  I stared at him looking dumb.  I replied finally, “Great, just great.”  I knew I had myoclonic jerks, but I didn’t know that I had a second disease.

All of what is happening to me these days is because of stress.  My quality of life is a daunting challenge and I have to fight every day for some form of normalcy.  I mean, my kind of normalcy, which we all know is also challenging.

The cause of all this stress is my upcoming surgery on Thursday.  My surgery is unrelated to Multiple Sclerosis or Dystonia.  This surgery will be attended by two Doctors and will take 3-5 hours.  I have good reason to be concerned which I won’t go into here.

slideshow_1259634_131408-clocksI have to focus on my 5-minutes at a time.  If I didn’t, I would be a mess right now.  However, the stress is still there even if you have a plastered smile on your face and I’m good at wearing a smile despite everything in my life.  Surprisingly, it works in that once you have a smile on your face, although it is “put on” in the morning, you find yourself living that smile.

My take on all this:

Stress is not always evident by your physical nature, however; it finds it way to the surface psychologically of physically in due course.  When it becomes evident to you and others by your body’s reactions to every day occurrences, then it’s time to figure out what may be causing that stress.  Once you know what it is then you can find a way to deal with it.  When you can’t find a way to deal with it, take your day in small increments and handle it that way.

I sit here hoping to hear your prayers on Thursday with a smile on my face taking my life 5 minutes at a time.  Sure, I’m still jerking around all over the place but that can’t be helped.  There is no way to take away the underlying fear of surgery.

I will happily jerk my way until Thursday at which point I will probably succumb to tears.  Meanwhile, I am as ever, a jerk.