Invisible Disabilities: Part 1

Beauty and the Beast

I have an Invisible Disability.

You may not have seen the banana peel there, and though it might lead to an invisible disability, this is not what it is.

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Nope, that’s not one either.

Someday I’ll tell you more about mine, but today I would prefer to introduce you to my friend. Michelle is a lovely, vivacious person with a wonderful sense of humour. One of those people who can light up a room with her smile. I know that’s trite, but in this case, it’s quite true. That’s the Michelle I like to think about, but much too often she is not herself.
michelle7

In her own words, her condition has its ups and downs, however at times, the downs seem to outnumber the ups. Michelle’s condition is called Fibromyalgia. You’ve probably heard the name but possibly don’t know how bad it can be. In a nutshell though, it is a non-life-threatening illness with no solution. I guess it would be hard to find a solution when the cause is unknown, though many are being investigated.
michelle6

What happens to the victim of Fibromyalgia is called “crashing”.  This means having no energy whatsoever to do anything; even your own personal care; bathing, cooking and the like. Just the act of speaking, is terribly draining. Michelle describes it as someone having pulled the plug. Body aches, which feel like you’ve had the life kicked out of you are very hard to deal with. The crash can last anywhere from days to weeks and is especially difficult in the winter.
Michelle 2

The only practical thing she can really do is to just rest and pace herself.
michelle 3

It’s not my place, nor would I presume to try to teach you about Fibromyalgia, but please feel free to click on the link to find out more.  My real intent is to bring the whole issue of so-called invisible disabilities to your attention. If you have someone in your family, circle of friends or colleagues afflicted with one, you have a very important role to play. Believe that we are being truthful. We need to be heard. It is so hard to go through what we go through and feel judged, or criticized. “You’re tired? I’m tired too. But I get myself out of bed and go to work everyday and so should you.” Everyone needs to be understood and believed even if our condition is not readily noticeable. I can assure you that it is far too noticeable to our caregivers and loved ones, who also deserve a great deal of support.
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You may have guessed that these beautiful paintings that I have featured across my post today, are works done by my friend Michelle. While describing the Beast Fibromyalgia that lives inside of her, I also wanted you to witness the Beauty that she creates. Does she do this despite her illness or because of it? I suspect it’s both.  Please visit Michelle’s FaceBook page at Michelle’s Acrylic Artworks.

Stay tuned for Part 2 of Invisible Disabilities coming, who-knows-when? Maybe next week, maybe never.

  • If you like my blog and would like to receive e-mail notifications of new posts, please hit the Follow button in the lower right corner of the screen.  I try to post once a week and I generally try to make my posts humorous. Today’s wasn’t, but then, life can be that way can’t it?

 

Ouch! That`s going to leave a mark…

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Chemo vs. Asparagus

Well, I’m ready to start my chemotherapy on Tuesday. I’ve been fitted with a port-a-cath, which is a device surgically implanted under my skin on my upper right chest. It’s small and rounded, so a bit like having a third boob, but not sexy at all! It’s designed so that I can give up my part-time pincushion job. Any needles, intravenous solutions or blood draws that I need from now on, will be done using this. Mine is called a PowerPort, which seems only fitting, cause it’s me after all. Not just any old port-a-cath will do, it must have the word Power in it, because that’s just cool. Uh-huh!

I was in to meet the wonderful oncologist in charge of my chemo at the clinic last week, in preparation for all of this. There were many people in the waiting room; patients and family members and it appeared that a lot of the patients knew each other. These will be my peeps for the next few months, so I paid attention. One lady took it upon herself to impart some startling news.  According to her information, a cure for cancer has actually been around since 1979, when it was discovered by Richard R. Vensal, D.D.S.  I was somewhat dubious, as I’m sure you would have been, but she handed me proof.  It was an e-mail sent to her containing testimonials from five people, all unimpeachable sources; among them a 68 year-old successful businessman, a mom’s daughter, a couple of other men and a woman. These people had been cured of cancer by eating pureed asparagus. I was dumbfounded! How could this secret have been kept for over thirty years?  Actually, there is an answer for that, right in the e-mail. There is no profit to be made by curing cancer. It bears repeating. There is no profit to be made by curing cancer.
cancer cure
I began a thorough research. First I checked to see if there was any clue to the power of asparagus in the etymology of its name.  Asparagus takes its name from the Latin “asparagus officianlis”, which means absolutely nothing to me.  Undeterred, I continued to delve and came up with a little known legend, which I would like to share with you here.

In the late 14th century an Italian gentleman by the name of Gustavo Sardcucci was struck with a cancer.  His family was devastated by this dreaded illness.  His wife and three small children had no source of income and it did not take long until they were on the brink of starvation.  One day, the youngest, a most precocious child, while walking through the forest, came across a small patch of green coloured stalks of some type of plant he had never before seen.

He picked all he could find and took them home to his mother.  Well, there wasn’t enough for the whole family to eat but Mama Maria decided that she would feed her children and her husband, in the hope that he would get well and be able to once again take care of his family.  As she served her husband, with trembling hands, she fervently prayed.  “Please God, take me, but spare Gus. Spare Gus.  SPARE GUS!”  As you know, when you factor in the Italian accent her prayer would sound like Please a-God, take a-me, but a-spare  a-Gus. A-spare a-Gus. a-SPARE a-GUS!

frantic lady

a-SPARE a-GUS

That was the first documented case of the miracle asparagus cure, but like many folk stories, this one was buried in the annals of history and fabricated discovered only recently by me. Incidentally, I just lately found a relative of Gustavo, by the name of Father Guido Sarducci. You may remember him from his many appearances on SNL in the 70’s and 80’s. While the padre had nothing to say about his his ancient relative or asparagus, he did carry on quite a bit about mushrooms or “da shrooms” as he insisted on calling them.

it’s no wonder that scientists have been sitting on this information. Try to imagine if you will, the implications, if everybody found out about this miraculous cure.  Asparagus would become a controlled substance, available only to the very wealthy and even then by prescription only.  Prices would go right through the roof.  Out of work oncologists would be reduced to selling it on street corners and getting arrested for having asparagus grow-ops in their homes.  Entire hospitals would be shut down and the pharmaceutical industry would cave from the decline of their fortune.  Those lucky enough to get their hands on this magical green vegetable would only be allowed to have enough for their own consumption.  Asparagus trafficking would become a world-wide crime epidemic.

I continued my research and was eventually led to an article in Snopes. I was shocked to find that there was no real basis to the purported medicinal properties of this common vegetable.  It is, as are many fruits and vegetables, an excellent anti-oxidant and low in calories, but it will not cure a person of cancer.  So, sadly, I guess I will have to attend my chemotherapy after all.

But I am stocking up on asparagus..just in case.</p>

Here’s a little of the dear Father Sarcucci, for your pleasure. For me it’s nostalgia, but for you it might all new.  Etiher way, enjoy!

Sarducci standup

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It’s the most wonderful day of the year!!

Julie was born right on her due date, and right in the middle of the worst snowstorm Timmins had ever seen.  In Timmins, a foot of snow is a sprinkling, so when I say it was bad, it was really bad.

As most babies seem to do, Julie decided to wake us in the middle of the night to let us know she was making her grand entrance. At first she was just nudging me a bit, “Hi Mom, I’m running out of room in here”, and I wasn’t entirely sure that I was in actual labour. She quickly became more insistent, doing what felt like cartwheels and jumping jacks at regular intervals.  At this point I thought it was time to wake up my ex-husband.  Let’s call him Paul, cause, well, that’s his name.  Also, just to be clear, he was still my husband at the time.

His reaction would have put Usain Bolt to shame. He raced around, getting the pre-packed suitcase, and throwing his clothes on while urging me to hurry up. He ran to the door and I was surprised to see, that when I finally waddled over, he was just standing there looking out with a stunned look on his face. Our car had disappeared, as had our front step, the driveway and the whole street. There had to be at least four feet of snow. What to do? He shovelled like a mad man.
shoveling
I don’t think a snow blower could have moved that white stuff any faster. Then he drove the car into the street and started shovelling out the street. What should have been a three minute drive to the hospital, turned into a two hour odyssey and I think I’m being conservative in my estimate.  I wasn’t really paying attention to the actual time, because time was being measured for me in a whole new way; grinding pain every two freaking minutes. We finally made it to the hospital and the nurse said “Wow, I sure hope the doctor can make it in.” This stopped my labour right on the spot, and Paul kind of looked like this:
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But they said that considering the weather they would let me stay. Eventually, Julie must have felt it was safe to try again, because she resumed her gymnastics, which caused my water to break.  Really, they tell you children are messy, but they start even before birth for heaven’s sake.

When it was finally time to go to the delivery room, I had changed my mind about the whole thing, but nobody would listen to me.  They even had the colossal nerve to laugh.  I had been very clear with Paul, that when the time came, he had to make sure I was wearing my glasses so that I could see the baby come.  During the last crucial push, where she actually popped out all at once, he had dutifully placed my glasses on my face.  Julie entered the world with the doctor yelling “Stop pushing!” and Paul yelling “Open your eyes!”

I didn’t see her come out 😦

When my parents came to visit, we all walked over to the nursery where all the new babies were on display like so many freshly baked loaves.  My mother, looked in on Julie, and exclaimed “She’s the most beautiful baby in there!”  Then she smugly looked at all the other unfortunate parents and grand-parents, who would have to make do with their inferior specimens.  “Mom”, I said, “everyone here thinks their baby is the most beautiful baby.” She looked at them all as if to say, ‘you poor, misguided people’.  Of course, Mom was a hundred percent correct.

My father-in-law predicted that my second child would be early, and because he was right about most things, I believed him.  One of his favourite expressions was “The only time I was wrong, was the time I thought I was wrong.”  Jessica, who has always been on her own schedule, made her appearance a grueling eleven days late.  Fortunately there was no snow storm, but her birth was not without its particularities.  She was born in a teaching hospital in Sudbury and being the easy going person I am, I agreed to have student nurses observe and help with the labour and delivery.  They told me that my student nurse Terry would be in to see me shortly and that I would be prepped for birth.  If you’re a mom, you know what this consists of, if you’re not…well, never mind.  As it turns out Terry was not short for Theresa but for Terrence, and I didn’t want to hurt his feelings, so I suffered my humiliation in silence.  He was with me for a few hours and was more nervous than a long-tailed cat in a room full of rocking chairs.

longtailed cat

city-countyobserver.com

I’ve always wanted to use that expression.  I love this blog!

When Terry’s shift ended, he said not to worry, Pat would be arriving shortly.  As it turned out, Pat was not short for Patricia.  I have nothing but respect for nurses, be they male or female and Pat was really great.  He was also very concerned with my level of discomfort and kept asking me if I was absolutely sure I didn’t want something for pain.  Maybe it was my screaming, I don’t know, but something was definitely frightening him.  I was determined to have a natural childbirth, just as I had with Julie, so I refused all medication until about five minutes before the actual birth.

I didn’t see her come out 😦

Just after her birth, Jessica’s APGAR scores were a little wonky – my pain meds? – so, she had to go into the incubator for a night.  We had to look at her through the glass of the nursery.  My Mom was at home looking after Julie, so she wasn’t there to exclaim that she was “the most beautiful baby in there!”  I just said it quietly to myself.

Obviously, I’m writing about my daughters because today is my favourite day of the year.  Mother’s Day! To me, this day is better than Christmas, my birthday, and every other holiday all rolled up into one.  Yes, I do realize how hokey that sounds, but it’s true.

I often feel like I don’t deserve my daughters. Some wonderful, magical thing happened and these two beautiful people came into my life.

deepintolove

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Don’t worry, because I am so totally on top of my child’s health.

I told you I was going to reblog something you’d enjoy as soon as I figured out how. It’s getting close to Mother’s Day and this lady’s blog is hilarious and apropos.

The Ugly Volvo

I try to be careful with my son’s health.

Not crazily “I Purell my lips when I kiss him” careful, but careful, regardless.  It is hard, sometimes, not to immediately assume the worst when things go wrong.  The other day he coughed and 85% of my brain went, “All children get sick and cough!” but 15% of my brain had, within seconds, summoned scenes from every movie in which a character is dying of tuberculosis.

This happens all the time.  On discovering a small circular red mark on his leg, my first thought was, “This is probably nothing,” which was immediately followed by the thought, “It is possibly the Ebola virus and by this point we are all living on borrowed time.

He is not yet walking and while part of me is positive that he’s just nervous about taking those first, uncertain steps, I am…

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Pain sucks!!!

It’s been an interesting week. What started as a niggling pain in my side after my second colonoscopy, developped into full-blown agony.  A simple muscle pull, either during the surgery or immediately after, combined with the stress of a cancer diagnosis, landed me in the emergency ward, where I was lucky enough to be looked after by some of the best in the health care system.
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The nurses were funny (and you know I like that), caring and professional. Dr. N. in particular, was especially kind.  My husband told him about the cancer and he looked at me with so much compassion, I almost dissolved on the spot and then when he witnessed  the muscles spasms I was having, his caring and concern were obvious and genuine.

After he determined that it was in fact a muscle spasm and nothing more nefarious, he ordered some really good drugs. Later, he came back to ask me how I was feeling and I saId “Can I lishen to your shleth-stesh-heartscope thingy?”  Later, when he figured I should be a little less loopy, he wanted to know if I could walk. Well, my vertigo was off the charts, so I had to tell him about that too.  He simply commented that I sure have a lot on my plate.  Here’s how that made me feel:
Thank you
They told me they would be giving me Dilaudid, which for some reason made me think of the movie De-Lovely.  So, I just wanted to show you that even when in pain, my mind is not idle – warped perhaps, but never idle. I wrote a little poem, that I hope you’ll enjoy.

Ode to Dilaudid

It’s de-lovely to be on Dilaudid
Cause Dilaudid is quite a delight
It delivers a punch somewhat delicate
That at de least helps me sleep through de night

Don’t deliberately hold back my Dilaudid
Morpheus and I have a date
This mythic god has me besotted
So Dilaudid should not be delayed

I’m no Maya Angelou, but please consider how stoned I am was. Here’s some fine print, that isn’t teensy-tiny, because some of us aren’t getting any younger fer cryin’ out loud!

Losing my Virtiginy does not condone the use of prescription medications for recreational purposes, no matter how good they are.

Of course, who want to use a not good medication as a recreational drug?

Nothing to do this weekend?  Buy a box of Ex-Lax!  Guaranteed to flush away boredom of any kind.  Ex-Lax, so you don’t have to spend the weekend just sitting on your couch.

Uh…not very appealing is it? Now you see my point.

I’m keeping it short this week, ’cause… Still. In. Pain. I do however, intend to reblog a post by another blogger that I thought you would find really funny.  I just need to figure out how to do that.  If you don’t understand, please see an earlier post entitled Me and My Computer.

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