My New Life: A Bionic Knee and Multiple Sclerosis

In late May 2016, I underwent total knee replacement surgery, and thought my troubles were just about over.  That’s when life threw me that inevitable curveball that changed the entire course of my life.

I anticipated that after recovery and PT, I’d be back enjoying everything I had been missing because walking had been too difficult: trips to the zoo with future grandchildren, walks thru the park, in-person Christmas shopping, hiking thru a parking lot to stand in line for a concert, leisurely trips to the grocery store (OK – short agonizing ones…my walking and standing ability would change – not my temperament.) Boy howdy, was I in for a surprise.

I didn’t expect PT to be a walk in the park but neither did I expect it to be the start of the most difficult journey of my life. While strengthening and retraining the muscles surrounding the 20-30 year bionic right knee, my left leg got weaker to the point that while doing some standing exercises, I would actually start sinking to the floor. I would come home completely wiped out, barely able to get up the stairs to lie down. Then my bladder failed me. I don’t mean the laugh/sneeze accidental squirt all women of a certain age who have carried a child face. I mean FAILED. I was 65 and wearing Depends. It was humiliating.

Deep depression set in approximately two months after surgery. Crying jags, total lack of interest in anything, inability to concentrate, and lost time where I sat in a chair and the next thing I knew it would be an hour later. The previous summer, my hands and fingers started getting numb and tingly, which my previous health care provider attributed to carpel tunnel. (by now I was with a different practice and never thought to bring it up to my physician.) My new doc prescribed anxiety and depression meds that summer, but I was too embarrassed to bring up the incontinence issue, even though she was my doctor, for pity’s sake. My mental and emotional state was a wreck

Between Christmas and Thanksgiving, things really started going to hell in a handbasket. My problems sleeping intensified, I could not control my body temperature, the “heebie-jeebies” drove me to take more and more anxiety meds, my left leg started to drag and was difficult to lift even enough to get into a shoe, falls were frequent and unexplained, vertigo started plaguing me, my shins became so itchy that I often left deep scratches in them, the toes on my left foot curled under to become more like claws, making it impossible to stand long enough to take a quick shower without leaning heavily on the shower wall.  There were times that it felt like lighting was going down my left leg as it would straighten and spasm for a few agonizing seconds. Calf, foot, and ankle cramps left me in tears at night. My energy and give-a-damn left completely, my handwriting began resembling that of a 15 month old toddler, and on and on and on.

Eventually, I dictated all these symptoms into my phone’s notes, and made an appointment with my doctor and handed her the phone. After a complete physical, she watched me attempt to walk (I could only use a walker by then), and ordered an MRI of my spine and cervical column. A month later, she went over the results and made an appointment with a neurosurgeon.  A couple of weeks later, he went over the MRI, checked me over, and told me there was good news and bad news.  The good news was that there was no injury that needed his surgical services.  The bad news was that I needed a neurologist, and that appointment sometimes took months, but that he would see what strings he could pull with a colleague.  A couple of weeks later, I saw the neurologist, went thru a battery of office tests, and he ordered an MRI of my brain.

On July 17, 2017, I was back in his office and was handed a box of tissues immediately. I was given the diagnosis…Relapsing/RemittingMultiple Sclerosis. Over time, something (no one yet knows what) started attacking the myelin surrounding my nerves. Think of how the rubber coating over an electrical cord can break/wear away, and how it causes shorts and possible fires.  My nerves, no longer insulated, were misfiring in my brain, telling different parts of my body to go haywire. Unfortunately, there is no electrical tape for the nervous system. Damage done cannot be fixed, and all the knowledge and drugs in the world can only help alleviate symptoms and maybe slow down the degenerating progression of this auto immune disease. Remember Annette Funicello? It’s the same disease she had, only before the modern drugs that can help with symptoms. Teri Garr also is an MS warrior as are Ann Romney, Clay Walker, Walter Williams (the O’Jays), Richard Pryor, two Osmond brothers, and a host of others.

Since my diagnosis, I have started on two different oral meds that have helped my bladder return to normal, and have given me a little more mobility with the left leg. In August, I was approved for three time a week injections that are designed to slow the relapses to maybe one or two a year – we won’t know until another brain scan months down the road shows a decrease in the number of new lesions.

Meanwhile, we have decided that since I can no longer get back up fifteen very steep stairs to the bedrooms (8” risers), I am living on the second floor of the house. We have turned one of the four bedrooms into a kitchen/sitting room of sorts, with a dorm size fridge, microwave, toaster oven, and Keurig. We are having a master suite added to the main level which will allow room for maneuvering a wheelchair in coming years, if it comes to that

I am slowly coming to terms with everything, and while I am still overwhelmed with everything, I am slowly learning this disease, and what I can do to help myself. The biggest thing so far is to learn to communicate my needs and ask for help. I’m a mom - I’m supposed to solve and do it all. Everyone is supposed to depend on me, not the other way around. I have had more than a few talks with the Man Upstairs, asking for His help and guidance. I have had a few with Garageman, being honest in how helpless and inadequate I feel.

I am trying to remember every day that I have not failed, and neither has my body. God chose me for this life for a reason, and my purpose is to discover why and do with it what He intends. Meanwhile, I’ll just keep on keeping on, and if I ever get too morose or whiney, please feel free to call me on it. All in all, my life is very, very blessed, and I have nothing to bitch about.

Today's Brain Dump

Why, no matter what the weather, do we so often long for the opposite?

And why is the weather such a wide topic of conversations? People don't agree on it any more than they do on politics or religion.

What are the questionnaires like on dating websites? Do they ask trivial stuff like your favorite color or really important and meaningful questions like what is your ideal thermostat setting, and how often do you take a break from your cellphone?

Why do we return from a $200 trip to the grocery store only to open the fridge and be disappointed that there’s nothing there that sounds good?

Why do I only break toes on my left foot, and is that why they all curl under instead stick out straight like those on my right foot?

Why do I expect the worst out of strangers?

If you use “light” margarine on bread, is it just as likely to fall butter side down?

Why do bugs bug us?

How do erasers really work?

Why do we say the alarm clock goes off when it comes on?

Why do children tend to use their indoor voices only when they are hiding something?

What do I want to be when I grow up, and as far as that goes, when will I start to feel like an adult and not a goofy, awkward young teenager?

If I could have dinner and conversation with anyone famous, living or dead, how would I ever begin to determine who I would choose?

When the clothing tag says “100% virgin wool”, who has been assigned to make sure that the sheep it came from is still untouched and innocent?

If I never shaved my legs, how long would the hair be by now?

How were we ever so sure of ourselves that when we signed yearbooks, we only signed our first name, expecting that in 30-40 years, the owner of that yearbook would know exactly who it was?

What’s for supper, which pizza place will be making the delivery, and why can’t they deliver a six pack and a bottle of wine with it?

Why does my foot tap to the rhythm of the ceiling fan when I’m trying to go to sleep?

Why do I wake up with a song on my mind that I haven’t heard in years? I mean years….like 3rd or 4^th grade? This morning I woke up sing an old Dodie Steven song - Tan Shoes With Pink Shoelaces. Where was my subconscious last night while I was asleep for those three precious hours?

How long would the government regulation be if an area had an endangered animal that ate only an endangered plant?

How can people not like cheeseburgers and steak?

Why does my mind come up with all this crap at 2am?

Why are Saturday and Sunday called a weekend, when according to calendars, the week starts on Sunday?

Would I rather be a ninja or a pirate?

Why do most things taste better battered and deep fried?

What's on my Desk, May 1, 2017

This will probably either show true genius or reveal what a slob I am, because I have not looked through the desk prior to writing.  Let’s get started.

The 40^th and 45^th high school reunion yearbooks from 2008 and 2013 respectively. Why are those out? For the same reason my 1968 senior yearbook is on the floor to my right….trying to figure out who I’m talking to on Facebook.

An “Important Safety Recall” for my 2007 Honda CRV, telling me that the “driver frontal airbag could produce excessive internal pressure upon deployment” in which case, metal fragments could burst thru and implant themselves into my brain. That could only help, according the the family.

A check from the state of Kansas for $40.62, for which no reason is given.  I hesitate to cash it for fear that in ten years, they will have found it was sent in error and ask for it back, along with $3,986.35 extra for penalties and interest.

A large number of Explanation of Benefits from Blue Cross Blue Shield detailing payments made to my physical therapist and what portion is my responsibility. Guess what….the therapist gets my portion up front. No need to tell me what I owe. Truly now, why do I pay these people to make me hurt? Shouldn’t they pay me for the privilege? Serious case of BDMS there. Since I am learning to walk again, I am Bound in a gait belt, Dominated over by a Sadistic therapist, and then my Masochistic self keeps going back.

Care instructions from the ophthalmologist for eye care after my YAG capsulotomy on March 27. (Why it wasn’t with the eyedrops in the nightstand, I cannot explain.)

Receipt from the surgical center for my co-pay on the above procedure.

A reminder from the hospital that it is past time for my annual boob smashing episode.

Thank you notes from the nieces and nephews for Christmas presents.

An empty plastic sack.

One salt and one pepper shaker.

One lipstick, color 265.

A yellow, extra light tension gripmaster for gaining strength in my fingers.

Bose headphones and the iPod to computer cord.

A large number of bank statements.

A book of various sized post-it notes.

Scotch tape.

An empty Alka Seltzer Plus cough and cold box containing a thermometer, 2 mascaras, lip gloss (color unknown), a staple puller, 3 plastic knives, 2 plastic sporks, 1 plastic fork, and 2 plastic spoons.

Neosporin

A thumb drive

Eyeglasses cleaner

A nearly empty tube of Dr. Pepper chapstick that is too low to use, but can still be sniffed.

2014 tax returns.

A small bit of Santa paper left over from wrapping presents on top of the laptop.

A compact brush that is supposed to be in my purse.

A 3 ounce can of WD40.

The rim that fell off of the ceiling light fixture above the desk.

Imitation pearl necklace. This one really bothers me since I don’t wear jewelry, and have never owned an set of pearls, imitation or otherwise. I can only surmise they were in the junk/ broken jewelry box my dad gave me when mom died in 2001 and that was all I kept.

A pencil and a pen.

A pair of white flip flops.

A spray bottle of Cepacol

My son’s extra dental ID card

Pistachios waaaaay past their prime

Two cameras with dead batteries

Sunglasses case. (The sunglasses are downstairs, crammed into the glasses case along with the glasses.)

Philosophy Falling in Love cologne spray

Resolve spray carpet cleaner

Hand cream

Facial cream

Volume IV of the collected plays of Neil Simon

Savannah Breeze by Mary Kay Andrews

Outlander by Diana Gabaldon

A recipe for Martha Stewart’s Meatloaf 101

A pad of note paper

A bible

Several magazines, all under the books and I don’t feel like getting up to lift the books to see.

1-1/2 pair earrings (don’t ask)

24” gold chain with my parent’s wedding rings

½ bottle super glue

Black electric tape

Dental floss

A pink marker

A ceramic Daffy Duck pen hold containing 1 pencil, 1 pen, and a straw

Six quarters, five pennies, and 2 nickels

Enough dust to create a few sculptures.

In 2023, I shall compare this list to see what remains on the desk.

First Loves

Probably opening a can of worms here as some of you think unkindly on that love ‘em and leave ‘em, never called you back, took your virtue and ran fella. Some may think of the guy/girl who you knew was so far above you that you wouldn’t dare even talk to her (news flash: he/she was scared of you too and far more insecure that you could ever imagine.)  Others may even recall a genuine connection where you grew apart as your minds and ideas of real life became realities, or even the one you had bottled up and still yearn for, but realize you’re better people separately than together.

Yeah.

That’s not who I’m going to talk about right now. Today, the first loves on my mind go further back than teenage or college angst and dreams. They go back to solids. The ones you can still count on today to pull you out of the hell of everyday doldrums and put a nostalgic, goofy grin on your face, or sweet smile deep in your heart as you remember.

For me, my first love was Papa Joe, my mother’s dad. He has been gone since 1964 and I still miss him like crazy, and get teary eyed thinking about him. He was my buddy, my ally in my fight with my mom against all things girly, and to this very day, 53 years after his death, I can see and hear him more clearly than any other relative that has passed. When I was around 3 and wanted a fire truck, he bought me one. He might have lost that argument with my mom, but he listened to what I wanted and loved me enough to provide it instead of getting me another stupid darned doll. We went fishing together, although I rather imagine it was on days my mom and her mom went shopping and I was left in his care. We kept my beautiful cane pole hidden in his basement, and I was thrilled every time we went out to the county lake for blue gill, crawdads, and turtles. Bologna and butter sandwiches wrapped in wax paper, and (shhhh) grape Nehi always went with us. I don’t know how he explained those boiled crawdad dinners, or the turtle soup (the blue gills were always too small and thrown back to grow for next year), but those were precious times. I also dearly remember sitting on his lap in front of the ancient round screen, black and white TV and watching the Gillette Friday Night Fights, and Ozark Mountain Jubilee. Fourties and fifties country music is still my go-to. Yup. I know my cousins who lived all the way in Boston back then, feel the same way about him. He was and still is a very special man. We all miss and love Papa Joe dearly.  

Another first love of mine was Gordon the mailman. To a toddler, he looked like a big, scary, giant, but he always got eye level with me when he talked….and talk he did. He told me about his grandchildren before I could understand that other people had families too. I think he always had a treat for me and the other kids on the block, and he was never in a rush. Of course, this was back in the day when the mailman carried a big, heavy pouch and walked his route, depositing mail into actual mailboxes all the way up on people’s front porches. On scorching hot days, he was always invited to sit on the porch a spell and partake of some lemonade, and on cold and rainy or snowy days, there was always a cup of hot coffee for him in the kitchen. Now I understand the concept of the different looking child in the family being jokingly referred to as the mailman’s.

Of course, if we are talking love, Roy Rogers cannot go unmentioned. From age 14 months to 6-1/2 years, every Saturday morning allowed, I plopped my then tiny behind on the floor and watched the most wonderful man alive, who also happened to have the most beautiful horse (Trigger), and the funniest friend (Pat Brady) who in turn, had a contrary jeep (Nelly Belle.) As for the woman in the fringe skirts, with the pretty horse named Buttermilk, well, I pretended to be her along with my trusty red plastic stick pony. She had the best life…her own business, great music, a cool cowboy boyfriend, and a silly best friend named Pat Brady whose goofy open jeep always took off without him. I must confess that occasionally, my nostalgia runs so deep that I hook up with a few episodes on youtube. Don’t tell my family. I fear they are already drawing up papers to have me committed. 

My last first love has been around since the 1930’s so when I first fell, I don’t know, but when I fell, I fell hard and have never recovered. Daffy Dumas Armando Sheldon Duck. Such love I will never again see the likes of, for it is all consuming. To even classify it as love seems too insignificant. Daffy is indeed my dethpicable soul mate. The one. My love for all time into infinity and beyond. I still watch his cartoons on the internet and some children’s channel, and although I have given up adding to my collection of memorabilia, I still drink from my plastic Daffy glass, and drink from my Daffy mug, of which I have a child size replica should I ever have a grandchild. We will sit and sip cocoa with marshmallow fluff from matching mugs and watch cartoons together. 

So for now, Happy Trails to You, and don’t forget that it’s always wabbit season.

A Sincere and Long Overdue Thank you and Love Letter

There are times when I take the most wonderful people and things they do for granted. We all do it. I have, as far as I can remember, rectified the situation with a heartfelt apology and a well thought out plan to not do it again. I believe that I have succeeded 99.9% of the time, but there is still one apology to be made.

Kaldi, I never knew about you, and yet for years, have taken your discovery for granted, never once giving you the appreciation and love you deserve. I realize that we have never met, being separated by centuries and half a world, but, still….Kaldi, I love you. Sincerely, madly, and deeply. It was you, the simple Ethiopian goat herder who noticed the increase in energy of your precious charges after eating berries from a small tree. You took those magic berries to the local monastery and told them the story. The abbot, tired and unable to stay awake during the long hours of prayers, boiled some of the magic berries and drank the potion. It kept him up all night, and he was so pleased, he shared the magic drink with the other monks, greatly enhancing their devotional abilities to long hours of prayer. It was a true miracle.

This miracle potion is the elixir of life. The sun in my shine. The reason I get up in the morning. The true Love of My Life. The juice of Jack’s magic beanstalk berries.

Coffee.

>bows head reverently and gives thanks<

So Kaldi, thank you for your astute observation of your precious goats, thank you for taking them to the monastery, and thank you, dear abbot, for having the revelation to boil them into a drink. It is because of both of you that I have remained felony free for so many years.

Welcome Aboard the Crazy Train

So the rat bastard 2016 is over.

It was the year I learned the term “popliteal aneurysm.” It started with the mister asking me to take him to the ER one morning in January. After about 8 hours, he was admitted and spent the next 10 days there, eventually having his right leg cut open from ankle to groin so they could remove the clot and clogged artery, and replace it with a vein that you really don’t need. Thank you God for spare parts. He was lucky he did not lose his lower leg or foot, and still walks with a limp because complete feeling never returned due to nerves dying.

It was the year of intense arthritis finally driving me to a full knee replacement. The left knee will just have to live with arthritis when it gets bad. Never. Doing. That. Again.

It was the year of intense political hatred to the point I came closerthanthis to hiding Facebook posts of friends from BOTH sides of the political spectrum because of their vitriol towards the other side. Still might in the case of a couple of them that refuse to let go, or maybe I’ll just introduce them to each other, lock them in a room and let them scream at each other until neither has a voice or the will to keep it up.

It was the year of loss. Three wonderful, dear, kind, funny, intelligent friends of mine went on to their final reward. Seems like I have cried continually since July, and with each one, the tears come from deeper within me. At 66, my mortality is staring back at me every time I look in the mirror. So many “I shouldas” that will never be. Kids….live life when you are physically able. The day will come when you can’t.

The rat bastard wasn’t all bad, though. Connected with even more friends from high school and went on the second annual WHS Class of 68 trip to southern Missouri and northern Arkansas. Such a wonderful group of people. Those of us born in 1950 are just plain exceptional.  LOL. We ladies still get together monthly –in warm months only, because we are older, not insane – and “do” lunch. I think we get rowdier and laugh more with each gathering. So much fun!

After a few career false starts, the kid went to work for a world-wide IT company and enjoys his job, especially the fact that there are set hours and nothing ever gets brought home. After a lifetime of watching his father and I bring the office home evenings and weekends, he knew what not to do. He still runs with the same group of friends from elementary/middle/high school, and we have been watching them slowly pair off, starting lives and families of their own. I still look at those mid to late 20 faces and see the 8-10 year olds I first met. So hard to see them as homeowners and parents, but time marches on and waits for no one.

So here it is 2017, and a few decisions have been made for this year.

The interior of the house will be updated and once finished, we will start looking for a much smaller one story with laundry room NOT in the basement. Stairs are not kind to either of us these days. Personally, I’d move to where snow is something you only see on a calendar, but that’s a battle I’d never win without involving attorneys and property settlements, and quite frankly I’m too damn cheap to pay their fees, so Kansas remains my home.

After purposefully gorging on first a 12 pack of Dr. Pepper and another of Barq’s in 2016, I have now been soda free for months. I am tackling sugar and flour this year.

I am in collaboration with a friend to write a book, and I have vowed to finish the one I started in 2005, even if I have to plot all year and commit to finishing it for NaNoWriMo. It will get done.I still am fortunate enough to be a 'first-reader' for a couple of established authors, and love seeing the entire process from first draft to published book.

I have vowed to blog weekly on something, be it short and whimsical or a long rambling rant.

There are a few other things rattling around in my strange mind, but those are still in formation or discussion within myself. What it boils down to is that 2017 is the year of living. Since retiring at the end of March 2013, I have pretty much stagnated, so in 2017 I have chosen to change.  We shall see where my journey takes me. Welcome aboard the Crazy Train.

Random Thoughts From a Squirrely Brain

Why do the trash and recycle people come some Thursdays at 7am and others at 5:30pm? Why do they sometimes hit one side of the street and not the other?

Why do boobs have to sag as you get older? Bras are uncomfortable, and free-forming it creates epic boob sweat and bruised knees. And don’t believe the articles saying they won’t sag if you never wear one…..we’ve ALL seen photos in National Geographic.

Why do men get ear hair when they age?

Why isn’t permanent hair color permanent?

Why do I procrastinate?

Why didn’t Noah ban snakes and mosquitos from the Ark?

Wasn’t Noah lucky that dinosaurs were extinct before the flood came?

Why don’t I have the guts to chuck it all and leave for a warm climate?

How does electricity convey television and music magically into my home?

Does anybody really know what time it is?

Is love really all we need?

Where did my get up and go go to?

Why must things get even more complicated? What’s wrong with simple?

Why are we all so impatient?

How did a sentimental and emotional old fool like me get together with a spouse who doesn’t do sentiment or emotions?

When did my body get old and why is my brain still 17?

Where do you keep things like cash, credit cards, pens, tissues, and breath mints in a nudist camp?

Why do even the oldest drawings of Adam and Eve show them with belly buttons?

Is there another word for thesaurus?

Why do some buildings go from floor 12 to floor 14, even though floor 14 is really floor 13?

Why is the alphabet in that order, and isn’t it amazing that in even the largest library, everything still comes down to 26 letters in random order?

Why doesn’t arm hair grow while leg, head, face, and pit hairs do?

What’s the difference between partly cloudy and partly sunny?

What happens if a glassblower sneezes?

Exactly what is grape flavor, because it isn’t the taste of grapes?

Why didn’t Tarzan have a beard?

Who was the first person who said, “Lets eat whatever comes out of this chicken’s butt?”

Why did everyone on The Minnow have all their worldly possessions with them for a mere three hour tour?

Why are yawning and laughter contagious?

Who let the dogs out?

Why does the urgent need to use the bathroom correspond with a critical scene in a movie or tv show?

Why does no one talk to me when I am sitting there with them (even though I am making an attempt to engage in conversation), yet those same people become quite chatty the second I give up and pick up the Kindle?

How can a dog lift a leg and hit his mark with great accuracy, yet a human male, using a hand for guidance, hit not only the target, but the floor, the seat, and the wall next to him?

Why is there about ten times more salt in a salt packet than pepper in a pepper packet?

If a wool sweater shrinks when washed, why don’t sheep shrink when it rains?

Why doesn’t butter fly?

If ants can carry 5,000 times their weight, why can’t my son carry his clothes to the hamper?

If you enjoy wasting time, why is it wasted?

Cinderella’s shoes fit all night long, feet swell as the day or activity increases, yet she lost one while running?

Is it half full or half empty?

Would it ruin a recipe if you used chocolate milk instead of plain?

Who are “they” in they say?

If water is clear, why are wet things dark?