The first diagnosis was viral meningitis.
I was ordered to the hospital infusion center where every day for five days I was given IVIG. It’s a donor plasma product that costs 10,000 dollars a bottle.
If plasma donations are called vegetable soup, I was getting the extracted
pepper. That’s how refined it is. It takes 100 people to give me one dose. Wow!
The thing is, nothing prepares you for being sick.
I showed up the first morning, a room full of people in recliners, all covered in a weird pinkish blanket. Some asleep, some watching personal t.v.’s, some have visitors who all had a forlorn look I would come to recognize everywhere.
When you get infused, it’s long hours of being attached to an IV pole.
You watch this fluid drip and drip and you dream it’s the fix you need.
In my case it wasn’t.
Two weeks later, I couldn’t climb stairs and my feet hurt too bad to wear shoes.
I started walking like the old Tim Conway character from” The Carol Burnett Show. “
The tingling was relentless and my hands were getting weaker.
My writing looked like a serial killers’.
Another month went by.
Mid- April I saw Dr. Stuart again.
This time I was diagnosed with Guillain-Barre ‘Syndrome.
The mildest case he’d ever seen, that’s why he missed it the first time.
It’s described as rare. “1-2 cases in 100,00 people.
Polyneuropathy, a disorder affecting the nerves. It can occur after a viral illness or immunization and manifested by loss of muscle strength, loss or altered
sensation and sometimes paralysis.”
I’m not sure how I felt about it but we went back for five more infusions and were told many stories of people who just spontaneously got better.
We were told it’ll go as quick as it came.
I was using a crutch for balance.
The tingling was going up my legs.
We went for my first EMG or as I like to call it, “shock the monkey.”
There was a very famous song/video on MTV in the 80’s that featured a monkey being tortured and to this day if I hear the song, I see the monkey.
Love the song, hate the video and hate the test even more.
I’m in a hospital gown, which by the way are never cute or in a good color. The very sweet, very southern nurse starts by apologizing before each zap. She’d say “Okay honey,here comes another, I’m sorry this may be a big one, I’m sorry.”
I got so tense before each zap that I swore it made it worse. You literally jump off the table.
Enough volts to light up a lightbulb or two. If that’s not enough, she then inserts a needle that’s attached to a computer and wiggles it around in your muscles.
Yeah, it’s terrible, and hot tears rolled down, another thing out of my control.
Diagnosis confirmed, Dr. Stuart suggested something called Plasmapheresis.
We would check into the hospital the next day and I would have the blood drained from my body, it would be strained for plasma and put back in. What?
This just went to defcon weird.
Being the newbies that we were to all things medical, we show up at the hospital after a big, delicious breakfast.
Bacon and eggs are apparently a” no no “ for being put under.
They are going to have to insert tubes into my neck that will serve as in and out portals that I’ll keep in during the two weeks this process takes.
And now I get to do the procedure awake? Fantastic!
One of the nurses sensed my panic and I do believe she believed me when I
offered to put my fingers down my throat, handed over a couple of pills. Let’s call them happy pills because that’s what they made me.
So off I’m wheeled into the procedure to get my neck tubes.
It’s quick, strange and almost painless.
Now I’m wheeled back and meet the nurse who will drain me.
She works for the Red Cross.
Hospitals do this so rarely they don’t or can’t stay current so there is only two or three nurses for the state of Georgia.
She’s good and kind and explained it to us like we were babies. I felt like one.
You can’t go to the bathroom once you start and it takes five hours or so but the happy pill wore off and I slept through most of it.
I was allowed to check out later that day. You only do the procedure every other day, so on my off days I could be at home. I would just be readmitted the day
One would think I would stay home and rest, one would be wrong.
I went back to work.
After each of the prior ten infusions I would get a ride home, change clothes and drive to the store. I scheduled my time so I’d be the first one there at seven am and be done by 12:00 or 12:30, I’d only miss a few hours and could work the rest of the day.
At the time it just seemed right, my responsibility, my job.
No one could tell me no. With the tubes in my neck, I wrapped up in a scarf and went to work.
The store needed me and I needed it and I had a horible case of denial.
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