The Sudden Interest In My Body, Butt and Denim

First , there will be no pictures.

OK, there will be one.  I think.  Anyway, I have this gender-free shot here to show how the doctors, or  nurses if its late in the day and docs haven't had lunch yet.  That's a good reason to do your colonoscopy in the morning.  The last one I had was about ten years ago (more on that later) and the Gastroenteritis who died right after my last colonoscopy in 2009. Stay away from people offering to do it for  cheap using a vacuum cleaner.  But it can be okay if you're up that late and can't stand seeing ancient Emeril Lagasse pushing his chicken cooker thing at three at the morning, another sad story of the Food Channel Monster eating its own children (with some garlic! Everybody loves garlic!)

I may have lost track there for a second or two but no worries, the afternoon drugs will kick in at some point and I will be eligible frasking corn. Be right backkkkkkk.

(sounds of sipping water}

So first you have to sign twenty or more papers to give the medical facility the OK to look  at a naked person'in the first place, then undress the person, and put on a silly looking large towel that has no ability to shield you from commentary from the nursing staff, who are trained enough to giggle about us at the assigned nurse stations near food carts, and large machinery that may or may not be part of what they are sticking up your bum shortly.

Meanwhile, the idea is to make this invasion of your dignity as gentle as possible, so the largest nurse on the floor to begin the happy job of getting you sedated. Suddenly you are part of a giant machine dulling your senses and preparing for the TV show, "Poop -free travels!"  Yes, at least, five professional in whites and goggles move toward the terrified patient, me, with soothing words and wires to go inside to make a terrorist attack upon my butt.

For those science fiction fans out there, think Borg, Cybermen, or back otar Walking Dead back of the crowd scenes.  Early on in the WD series there was a hospital scene in which Rick is trying to escape the facility, with newly dead patients, docs, nurses, and people having colonoscopies, out on the street with all that medical stuff hanging out as the now dead patient goes in search of fellow dead patients.  Rick does escape these unfortunate folks and then I've forgotten whatever went on after that.  

Here I must give a tip of my Brooklyn Tip Tops baseball cap to the doctors I deal with.  When it was found that I had MS, the docs decided I should be excused for ten years for any anal exploration.  My time expired this year, so I went through with it.  The drugs allowed me keep in contact with the hordes of people and machines watching this:

OK, two pictures.

Again, it (me) has a sci-fi feeling in this photo.

Kirk: Spock, what is this place?

Tri-corder sound.

Spock: Unknown, Captain. We appear to have beamed into a living organism of immense size.  We were invited, and were given these coordinates.  Perhaps we should proceed  along this pathway and down this hall. 

McCoy:  Jim! Spock! Wait! This is not a hallway! It's a waste passage, intestinal.  I think we need to go before...

KIrk: My god.  KIrk to Enterprise!  Scotty, beam us! Now-"

McCoy: Jim, wait! There's a light coming toward us. I think it may be a welcome device-"

Spock: Perhaps not, Doctor.  It has seen us and it is reversing course. Perhaps we have been duped into a colonoscopy for some large human like being miniaturized, and placed here for some reason. Or we remain at our regular sizes and this creature is massive version of a human form.      

A large set of pincers next into the hall and opened their arms and snatched before what be attributed to some orb, attached to left orb.

Spock: Time to go, gentlemen.  The next visit should be upon us it 

KIrk: Scotty? Anytime now?

Click. Click. Click. "Clear!" the doctor said,  stepping back off from the patient! "I could swear I heard voices in there."

"In his butt?' the nurse asked. "Doctor Mugabe, man, you are something else."

" I swear, Nurse Chapel, I could hear the voices.coming from his rectum.  Hear, the tri-corder can help. Place it at the rectal

"In your head, Doc. Not in Mr. Martin's butt."

"Let's look at the film. Run the video."

I went home so I don't know the outcome of the dreamBut something tells me no more colonoscopies for Tom until 2029  Since MS is having its way with me, it may not be a big deal. And I am

Oh ,by the way, one week after this, I was at the urologist, and bingo, pants down, turn around and bend over.  "This may hurt a bit.  Yep. But the second invasion of my person showed all is well.

My psychiatrist says I'm losing weight.  12/31/2010  193 lbs (last day at work) 10/7/2019 173 lbs.
More on this later, but I can fit into my 9th grade denim jacket.

Anyhow, I dozed a bit after the tuneup was done and woke from the enforced nap.  I had one polyp getting ready to cause problem and "snip", it went away. Was told as they won't need to see me for 10 more years. 10 more years of MS.  My heart Doc says that all  is good after tests to assure that there were no more problems when my heart beating 42  beats per minute, which when you do the math means I'm dead 18 seconds a minute.  I was in this group:

• Blue Whales. 8 bpm.
• Elephants. 30 bpm.
• Horses. 36 bpm.
• Tom 42 bpm.
• Humans. 75 bpm.

Anyway, I did feel better after four consecutive Ihop breakfasts and sitting around the house watching Hall mark the heart rate is up to 72 pbm.  Running (pretend I do) against my Nemesis is relentless tedium, but there's sometime for hope yet. And I hope to get this blog rolling again.

It's good to have goals, especially those of us with "special"  challenges. Whether it be making your bed, listening to good music, calling people who are aware what's going on and will have an ear for your needs (support teams - bless'em all)  You need to know where your health buddies are. I know where mine is. Jackie, my dear wife.  That's pretty much it.   My actual family sends a Christmas card or two for us each year.  Due to my challenges, I am a cranky SOB somedays but I try to be nice. Mostly.   And I thank you for reading.

September 1971

January 2020

Spazzing is a MS thing or how to be a hypnagogic jerk

And now...spazzing.

I’d like to start off with my best spazz (uh..muscle spasms, a very annoying symptom).  Many of us have muscle twitchings as part of our own MS world (your symptoms may vary) but on for me, when I lay down my weary bald head, the twitching begins. Upper back, left arm, the upper left thigh, dash over to my lips, and a stop in the back before it repeats.

And then comes the best part, but allow the pictures and words below tell the story.

I was in a doctor’s office awaiting my wife Jackie’s return from her appointment with her physician.

A waiting room like this one, only there were actual humans in some of the chairs.  I’d put me in the far row, the second chair just below the right hand framed picture. And as I’m usually prepared for these waits (30 years and you should have picked up the pattern, or you won’t still be there in 30 years).  I had my book and my Starbuck’s latte.
                                           

And the waiting began.  The book was a thick one on the Civil War and, after 20 minutes, the small details of the Battle of Cedar Creek and the small print were starting to get to me (remember I’m drugged up as well), and my eyes began to close, but I bucked up, downed more of my latte, and charged back into the Confederate strategy of that mid-October battle.  And then....

This lucky guy here at least had his left arm to support his tired little head.  Me? When the brain had decided to go to neutral, it forgot (it does that a lot now) to pay attention to the update from the Hands department, that they had an opened hook in the right hand, and the left held the coffee cup.

So my body started to fall into a peaceful nap, but full hands and an empty lap, and MS, as many of you can attest, loves moments like this….

The dreaded full body spasm!  My muscles went all which way.

 

And, a second or two later the result…..

Dropped book and… (sigh)

and all eyes

                                                         


were on me. I quietly picked up my book, cleaned the coffee up as well as I could (what’s another stain on that rug?) and retreated to my chair.  The eyes returned to what ever they were doing before I spazzed, but not without occasional glances my way.

See, this is where being sick has even more challenges because you wonder if you should try to explain why all your muscles all began going in opposite directions.  But unless you’ve got a plague like MS or  one of the other nuero ailments, folks will just say “That’s a weird thing ya just done, splattering your coffee and your reading material there. Arms and legs flinging all over. Funny. Still, you’re looking great!” and move on.

These muscle spasms are also night visitors.  Their favorite time is after you’ve snuggled into your bed and are starting that lull into a relaxed thought, the last time for me as I was thinking about crossing a street.  My right shoe stepped down from a cement sidewalk to a cobblestone street.  The “thought me” said “I better move my left foot over or I might tumble over -

Under the sheets my arms and legs splayed out, my eyes bulged open, and I breathed quick. I knew the score. MS 1, Tom 0.  I was now wide awake, and shuffled down to the den and read for about two hours.  Maybe I should have read that Civil War book again.

At www.livescience.com, there is a good definition for this uh, thing:

A hypnagogic jerk is an involuntary muscle spasm that occurs as a person is drifting off to sleep. The phenomenon is so named in reference to the hypnogogic state — the transitional period between wakefulness and sleep. Hypnagogic jerks are also commonly known as hypnic jerks or sleep starts.

Is it really just an MS thing? No. But we, or I do, also have my legs numbing up so I’ve got a real careful moment when I get up sa-low-lee.  The bedroom is dark (though, having other brain problems, I see flowers and lace and swirling leaves, all white, but that’s another blog) and Jackie has not woken or even moved in our bed.  Anyway, start with livescience.com and Google around.

One memory still clear in me is seeing my father sitting in our kitchen watching the small TV we had there in the late seventies.  He would watch for hours, breaking only to doze off, have his head start to sag to his chest, eye lids closing and then his body would spazz.  He’d look around and then turn his watery blue eyes back to the TV.  I was concerned, and slightly scared then, because, well, that it could happen to me, and as I researched MS I saw spazzing would be part of what this is drudgery.  And it is.  He had no idea what this thing was.  I know what this thing is and what it is doing and will continue to do to me. Which is better?

Social Security Disability, Part II

So here I sit on the little bed in the doctor's office, and I'm wearing the back open gown.  And I'm up to chapter three of the life of William Herndon, who was Abraham Lincoln's law partner, long ago and far away.  But since I've read everything possible in the room while waiting for the doctor, I was now down to the actual book I brought.  Not that the President's friend's life story is boring or anything, it was a powerful time in US history, and Herndon found himself as an eyewitness to Lincoln's rise to the White House, and had access to people and papers - first-hand-sitting-there-access- that biographers don't have now.

But Herndon never had to kill time waiting for the IMA physicians to finally call my name.  Naturally I had to print directions and download a picture of the place in order to not waste time driving around as I do now because  the directional light in my brain just flashes yellow after years of left and right arrows sending me the correct way.

Applicants for disability go in the back entrance (not pictured) and sit in a waiting room like all waiting rooms, drab with ongoing television.  They fill out the forms they are handed and wait to be called.  It is just so surreal to sitting out here waiting to be called (every time one of the people in the white lab coats came out the main door, it was like The Price Is Right - Come On Down! You're the next contestant on You Say You Can't Work! Pick Me! Pick Me! I have lesions!)

It did like they were just hoping some people would just leave in exasperation which meant their case would be denied for benefits, not only with SSD, but other forms of assistance as well.  It's one of the perks of being an old Social Services worker  (though I prefer the term later middle aged old time Social Services worker).  But eventually they got around to me and I did the half  hour with the psychologist and I can still name the three things she wanted me to remember (tulip-chair-brown which was fairly easy because you could think of a brown chair with a tulip on it) and I did pretty well with number orientation (start at 20, and count in intervals of three backwards).  A little bit of historical information, medical stuff, here's a list of the scripts, and yes, on top of the file I brought with me is a sheet of paper with directions to the building, a picture of the building, a list of things I wanted to mention, plus a list of other errands.  I held this in my hand so the doctor could see it.

"I have a Master's Degree in Public Administration. I am a published writer. But unless I write down what I need to do immediately, its gone.  I can walk from my writing desk to any part of my house, and any part is no more the 20 feet away, and by the time I get that 20 feet, I've forgotten.  I'm a person who uses words for a living, and the words are being hidden by my own brain."

I'm not sure how I did, but I can say that at least she got sort of an idea of what its like, especially when you get the old line "Forgetting when you walk into another room what you're in there for? You're just getting old!" No. This is not normal.

Making the case to the next doctor while I am wearing this:

was somewhat problematic because (Okay, Everyone - 1, 2, 3) "You look great!" And I can touch my nose with my hand quite well, thank you.  I prep for days before my next nuero appt. I can walk but then I'm supposed do the heel-toe thing, and it comes out that no matter how great I look I live in a brain fog where I can go off balance any old time, and taking umbrellas and nearby pedestrians with me.

"It says here you were on Copaxone.  Why aren't you still taking it?"

"Copaxone does not work for people with PPMS/DD," I said.  "My new neuro got me off of it immediately."

"Why not on steroids?"

"It does not work.  My lesions are in my brain."

And why are looking in my ears? You can't see the disease that way.  No optic problems so far.

Reflexes (also known as hammer time):

"Strange your left side is different from your right," said the doctor.

Yep.  Everything is different.

I'm not sure that he got much info from said new neuro except a faxed letter saying I've got lesions, and good luck!  I was dismissed quickly, got dressed and out of there.

Will I qualify? Not sure yet. And then its going to get harder if I do get rejected.  But writers know rejection slips pretty well. "It's not personal," editors will say.  But you've turned yourself and your story over to people who look charts and eligibility criteria to decide your fate. Nothing personal, and you do

look marvelous, darling.

Thanks for reading - more soon.