Thursday, May 6, 2010

Carnival of MS Bloggers #61

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

What to Say, Shingles and MS, Wise Words for the Caregiver

How YOU doing?
submitted from the Better Left Unsaid blog

Clueless Co-worker: Sorry to hear that you’re suffering with your allergies.
Marvelous Me: Uh, actually it’s not allergies, I have MS and am having a relapse.
CC: *dumbfounded face* Ohh, ok then. Well, whatever it is, I hope you get better soon.
MM: *areyoukiddingme face* Thanks.
Thank You, for sending this in Marvelous Me (love the name). It raises a question I wanted to ask. How do you respond to the question “How are you doing?” Personally, I usually just say “fine” even if I’m so dizzy I can’t see straight or the pain in my legs is just about unbearable. Saying “fine” just seems so much easier than explaining everything. One can accuse me of not presenting the opportunity to help me out. Could someone say you’ve just passed up a perfect opportunity to educate someone. What do you think? Do you ever truly tell someone how you’re doing?

Attack of the Shingles!
by Karen at Quarter Acre Weed Farm

For anyone who isn't familiar with these devils, please do everything in your power to keep it that way. If you are over 60 (I'm not) or have a compromised immune system (I do) or if your doctor advises you to receive the vaccination, called Zostavax (he just did), familiarize yourself with information about Shingles and take whatever precaution or preventative available to you.

Shingles is the Chicken Pox virus which lies dormant in your body after you recover from your childhood disease. It hides in our bodies, quiet, smoldering and just waiting for something to trigger it to get moving - clawing its way along whatever nerve fibers in your body it chooses to invade and inflame. So now, my immune system (as it does after the rare occasions I've been stricken with illness in the past) over-reacts, so now the MS is kicking my butt around and I'm really feeling the effects of that. The Shingles rash is better (the pain is manageable until the afternoon) and I'm not feeling feverish and sick all the time. I am getting better. This will pass. I will get on with it.

by Rick at Multiple Sclerosis Caregiving

In Multiple Sclerosis has a History, I wrote, “I didn’t know lumbar punctures have been used for diagnostic purposes since 1913″. I think that piece of the History of MS jumped out at me because lumbar punctures (aka “spinal taps”) give me the creeps.
Believe it or not, (and I am certain she will disagree with this) my wife’s spinal tap was harder on me than it was on her.

After all her other diagnostic tests were done – Magnetic Resonance Images (MRI), Visual Evoked Reponse (VER), electromyograms (EMG), blood work (CBC, etc.), electroencephalograms (EEG) – the lumbar puncture (SPINAL TAP) was saved for last. It’s the one test that actually answers the question, “is this Multiple Sclerosis (MS)?”
The way I understand it, spinal fluid is removed and sent to a lab which uses electroflouresis and looks for oligoclonal bands – don’t worry, I don’t understand it either. If the oligoclonal bands are present in the results, then they, along with the other test results, make it official: it’s MS. (According to Wikipedia, "Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands".)
Drawing the spinal fluid is a fairly simple, uncomplicated procedure for the doctor and patient. Perhaps, not so much for the husband/caregiver, though.

I didn’t see it all because of where I was standing when it started, but it looked like a very professionally organized medical procedure. My wife sat sideways on an examining table with a nurse beside her at the table’s end. The neurologist stood behind her with a shiny tray of medical instruments.

My wife’s feet were placed on a round, stainless steel stool in front of her beside the examining table. The stool was adjusted to just the right height for her comfort. (Up front, I want to add there was no stool or seating of any kind for the husband/caregiver). I stood in front of her for moral support and to help her remain still.

A little local anesthetic was administered at the spinal tap site. After a few moments of the neurologist asking, “Can you feel it now? Can you feel it now?”, he was ready to begin.
Knowing that medical procedures have caused me to feel a little faint in the past, I focused my attention on my beautiful wife’s face. She, however, wasn’t really in the mood for deep eye-gazing and so I was pretty much to myself. But I did my job well. I kept her still and provided continuous support.

A few minutes into the procedure my wife, doing as instructed, reported to her doctor, “I can feel that. It’s like a little pressure.”

For the first time, I looked over her shoulder at the neurologist. In response to her report that she could feel something, he reached to his shiny collection of goodies. He chose a syringe with a needle and then he did the oddest thing. He tilted sideways a bit.
I looked to the nurse and she was leaning the same way! And the walls, too!

It hit me. I was fainting!

Quickly, I searched for a place to sit. And right in front of me was the stool for my wife’s feet. Perfect!

Then that little part of my brain that often has the last rational thought before it all goes black, screamed into my dark fog, “No! She can’t be moved!”

Searching around the leaning room in slow motion I saw so many things: the tilting neurologist was focused on my wife’s back, the tilted nurse was focused on the neurologist, my leaning wife was looking at me with big eyes and raised eyebrows (she suspected what was coming), the bright surgical lights were dimming, to the left was a doorway. I fell through it and, as it opened, I saw my landing place in the dark: a surgical chair! I crashed!
Fortunately, the room I crashed was empty and no procedures were in progress!
I leaned back in the chair like I were at the dentist’s. The darkness began subsiding. Slowly, I began gathering my senses and noticed a stack of surgical towels and a sink beside the chair. Grabbing a handful of the towels, I plunged them into the cool running water and covered my face waiting for the nausea to pass and clarity of thought to return.

As soon as I felt like sitting up I began pulling the towels from my head. Immediately, a nurse walked into the room through the other door.

She stopped when she saw me. I was not expected. I tried to grin without looking goofy as water dripped down my head and onto my shirt.

“Can I help you sir?”

“No, I think I’m ready to go back in for more,” I replied. Her eyes widened as she backed out of the door.

I walked softly back into the room where my wife, the neurologist and his nurse were still at it. My head pounded. Sheepishly, I stood in front of my wife. Seeing my pale face and wet hair, she knew her suspicion had been true.

“I almost fainted,” I explained softly.

“I know,” she replied.

“How are you doing?”

“He’s almost through”, she offered calmly, continuing to sit still on the examining table.

“That’s good. I’m here for you, Baby”, I offered.

“I know you are.”
Caregiver’s Tip: When forced to observe medical procedures that may cause you to faint, make certain you have an appropriate landing place before the procedure begins.

This concludes the 61st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 20, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 18, 2010.
Thank you.
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