I am Scared…..Tremendously

I don’t work in the healthcare field. I’m not an expert in healthcare issues, but I am a person with health issues, and the way the healthcare system is set up in this country scares me – tremendously.

It was ten years ago when I became a “no longer healthy person”. Before that time, I went to doctors for mild reasons, in search of quick fixes to temporary, benign illnesses. I usually walked out of my doctor’s office with a prescription and 5-7 days later, I’d be back to normal. Healthy again. Living my life with the expectation I wouldn’t see my doctor again until another bug was caught, and another antibiotic prescribed.

Like many people who develop significant diseases spontaneously in the midst of their life, my pattern of going to doctors has changed. I no longer wait until my perfect health is temporarily hijacked by a nuisance bug to see a doctor. I am now on a schedule with my doctor. Every three to six months. Sooner, if I need. But no longer than six months. Got to be kept tabs on when your health is compromised in a, more than likely, permanent way.

Although I didn’t have much experience with doctors, and hospitals, and medical procedures when I was given my diagnosis, I was, however, very much aware of the term pre-existing conditions and its implication.

And it scared me – tremendously.

Luckily, I was working and had insurance. But I knew my disease was complicated enough that it may interfere with work. As doctors told me the treatment plan for my disease, the medications I must take, and all the procedures that were needed, I called my insurance company with a panicked heartbeat, praying everything I had to do was covered.

This scared me – tremendously.

Lucky for me, everything was covered. But that didn’t end my worry. What if I lost my job because I couldn’t do my work at the same level? I could never afford insurance on my own, and besides, no insurance would touch me because I now had a pre-existing condition.

I worried about  one day being without insurance, but having insurance didn’t stop my worry, either. Multiple hospital stays in the ICU for over two weeks each visit, racked up huge bills. My insurance paid everything minus the deductible, but I had a lifetime limit on my insurance of about five million dollars.

To a healthy person, that may seem like a lot. But when you’ve already spent over three hundred thousand dollars from hospital stays, and monthly treatment costs over twenty-thousand dollars, those millions go by fast. According to CNBC, in 2013 bankruptcies from unpaid medical bills was the number one cause of such filings. They also found “15 million people will deplete their savings to cover medical bills.” (CNBC) 

When Obamacare came out and ruled that insurance companies would no longer be able to discriminate against people with illnesses, and offer them coverage, I was morbidly relieved. I was assured that even if I lost my job for whatever reason, as well as the insurance benefits that came with it, I could be picked up by another insurer, despite my illness.

This was huge. I was no longer tremendously scared.

Not only did I no longer have to worry about being denied health coverage, thereby being left to die in the streets with no insurance, but President Obama also eliminated the lifetime limit. That was huge too, because hospitals charges are unfairly astronomical.

But now, insurance companies are pulling out of Obamacare because it seems covering sick people is just too darn expensive, and since the United States, the most powerful and developed country in the world, has a for-profit health industry, profit is the bottom line. Sick people be damned.

I’ve heard regular people, people who don’t work fancy jobs for insurance companies, talk about the situation as if it is perfectly normal. “Of course the insurance companies had to get out. They were losing hundreds of millions of dollars!”

Yes, let’s feel sorry for the insurance companies making billions of dollars in profit, as well as their CEO’s with their tens of millions in annual salary. These companies that are pulling out of Obamacare are still going to make billions of dollars in profit at the end of the year, but they may not make as much as they did back in the days when they only insured healthy people, while leaving the sick ones to fend for themselves or die.

For the first time insurance companies had to cover sick people and it cost them too much money, so now they’re out.

We should be outraged. Covering sick people in healthcare should be the norm. Where’s the healthcare in denying sick people coverage? The people at the top, filled with their greed, are laughing their asses off at the sheep we have become. Profit over people is a horribly immoral way to run a healthcare system.

I am, once again, scared – tremendously.

 

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Photo courtesy of freedigitalphotos.net

Michael Myers Versus the Needle.

I have a condition that requires infusion treatments called IVIG (Intravenous immunogobulin) treatments. No big deal. I sit in a chair for four hours with an IV stuck in my arm as a clear, gunky-like liquid substance slowly drips from a bag, through a tube and into my body. And for the next four weeks I get my life back (thanks to the healthy individuals who donate their plasma so people like me can enjoy some semblance of their old life).

Developing a life-changing illness (and there are many) can happen so quickly you feel you were teleported into this new life of constant blood work, invasive medical examinations, tests, doctor appointments, surgeries, hospital stays, pills (lots of pills), because you can’t remember how you got here. “Wasn’t it just yesterday that I hadn’t been to a doctor in over five years.” Um. No. Those days are over. And it doesn’t matter how young you are. If your body no longer works the way it’s supposed to, you see a doctor and you see them often.

Being diagnosed with a disease (any disease) takes you to a scary and lonely place.  I was never alone, but I was often lonely even though I had no shortage of family and friends calling me and offering their help, support, their love and their time. But still I felt a profound disconnect to the healthy people around me when I was the only sick person in the room.

A person with health can only empathize so much. Though my family makes me feel safe when I am at my sickest, they can’t look in my eyes and know, really know, how I feel the way another sick person can. The condition may not be the same, but the doubts and fears are.

I had no idea how much I would rely on other sick people to make me feel better because the first time I walked into the Infusion center I almost cried. It was a room set up in the back of a doctor’s office. There wasn’t anything spectacular about this room. It was a slightly-larger than regular sized room – emphasis on “slightly.” About eight or nine reclining chairs lined the walls in a circle. We sat next to each other with just enough space between us for a small table and maybe a handbag. There was no privacy. I could see each person and they could see me.

I almost cried and not just because of the lack of private space, but because the room was filled with sick people. Though I’d been sick for a while, denial allowed me to believe I was really a healthy person suffering from temporary set-backs. But I was there that day because my condition was getting worse, and yet I was still lying to myself. “What am I doing in the same place with all these sick people? I don’t belong here.”

But I did, and soon I realized how much I needed that place. Needed those (sick) people. After almost four years I have developed close relationships with my nurses and other patients who have become familiar faces with names and shared stories.

That place makes me laugh even when I want to cry. Like the time a woman (now known between my nurses and me as “The Screamer”) walked in. I barely noticed her… until she started to scream. Whatever her condition is, it doesn’t affect her lungs. That woman can scream. I couldn’t see her face because two nurses were sitting on either side of her, holding her down, but her feet were flailing. And those screams.

I turned to my nurse. “What are they doing to her?”

My nurse sighed deeply and said, “The same thing we do to you. They’re starting an IV.”

An IV? A simple needle? But those were “Michael Myers is in my room and he’s trying to kill me!” screams.

From then on whenever my nurse says to me, “Hey Alicia, ‘The Screamer’s’ coming in today.” I smile because no matter how sick I may feel, there’s always something to look forward to. More screams, please.

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Photos courtesy of Freedigitalphotos.net

I’m not Superman, anymore

I was strong before I had MG – really strong. An athlete since I was a child, I enjoyed sports and being active. I also loved to lift weights. Maybe a little too much, that was debatable, but I liked the appearance of looking strong and loved how it made me feel so capable.  I have a friend who’s in a wheelchair and she’d always tell me to wait for someone to help pick her up. I’d smirk and say “G, I got you.” And leaning down, I’d scoop her into my arms with such ease, so high, that she’d say, “I think you can put me over your shoulder and run up a hill!”

I probably could have. I was that strong, but not anymore. That kind of strength had been unknown to me for so long I’ve forgotten how it feels. I don’t remember a time when I could talk as long as I wanted without my jaw getting tired or my tongue feeling like a dead fish in my mouth – completely useless. I was often referred to as “the quiet one” – shy around those I didn’t know well, but now I wished I’d talked more. Not because I had anything all that relevant to say (trust me, my words of wisdom continue to be few and far between), but simply because I COULD!

Like everyone who suffers from something, some days are better than others. Sometimes I find I could talk more, walk more, DO more. But the people who love me know when I need to rest and are very supportive.  My twelve year old nephew, whom I share a very deep relationship with, always knows when I’m not good. I play with my nieces and nephews as much as I can, but they know Auntie can only do so much. It’s my little Joey, Jojo, who shows so much concern for me. He’ll say, “Auntie, your talking’s not good today.” Or he’ll notice when one of my eyes start to droop, ever so slightly, a sign that I’m getting weak. He watches me. REALLY watches me. I’ll tell him that Auntie needs to rest and then go lie on the couch. He’ll lean down, give me a kiss and a big hug while telling me to get better.

Whenever we see each other, he always asks how I’ve been feeling and if my breathing’s been okay. It’s very sweet the way he worries so much about me, but I wish he didn’t have to. When he falls asleep on the couch cuddled against me, I wish I could carry him to his bed. But I can’t. I know there was a time I could have, but each day takes me further away from those days that I barely remember them.  I now have to wake my sleeping nephew and watch as he groggily makes his way to his bed.

The day it hit me that I’d really lost my strength was when I had to ask my near-seventy year old mother to open a jar for me. That was brutal. It made me sad and she knew it.used to be the one people asked to open jars, carry the heavy bag, etc.  This happened in the first few years of the disease as I was slowly transitioning from my old life into this new one. It was hard for my mom to witness. Often, I’d hear her on the phone, expressing to someone with sadness and maybe a little anger too, “She was used to being so strong.”

Thankfully, I am now able to open jars by myself. It’s a part of the “good days” that the new forms of treatment my doctors have put me on allow me to enjoy. The treatments have increased what I am able to do, and for that I am grateful, but it isn’t anywhere close to the capabilities I once enjoyed.

My nephew was too young to remember how I was before I got this disease. He only knows me as being sick, yet despite this, the song we hold hands to and refer to as “our song” is Bon Jovi’s “Superman Tonight.” It’s one of our “road trip” tunes burned onto a CD designated to accompany us to whatever destination our journey brings us.

The chorus goes like this:

“Who’s gonna save you when the stars  fall from your sky? And who’s gonna pull you in when the tide gets too high? Who’s gonna hold you when you turn out the lights? I won’t lie, I wish that I could be your superman tonight.”

The line where Jon Bon Jovi sings, “Who’s gonna hold you when you turn out the lights?” My nephew yells out “Auntie is!” and while I’m driving I reach behind me and we clasp hands every time that verse is sung.  Every time. Although I hardly feel capable of being someone’s hero anymore, at least I can still get a glimpse of it during a car ride while I sing out loud with a little boy who really, really loves his Auntie and sees her as his “Superman.”

Maybe I can’t lift my friend from her wheelchair, carry my sleeping nephew to bed, or bench press the ridiculous amount of weight I probably had no business lifting in the first place, but there are days when I feel like I can. I do as much as my body allows. And although it may not come close to what I used to do, I go to bed snuggled underneath the cape that is Superman because there are days where I still feel invincible.

When I was a little girl Superman was my favorite superhero.  It really wasn’t a hard decision. As a toddler he was already lifting cars, he could fly, run faster than a speeding bullet AND the guy could change clothes in a hurry. I’m talking in like a millisecond, which would come in handy during a hurried morning-after getaway (not that I would ever do that! I’m the girl who stays and makes you breakfast)   Did I mention the guy could frickin’ fly! (I purposely didn’t bring up the whole x-ray vision thing because that ability played NO role in picking him as my favorite. None whatsoever).

But the best part about being Superman is that he gets to save the woman he loves while she’s falling into the pits of the Niagara Falls. Who wouldn’t want to do that? I sure would. I’d always seen myself as being the protector of my family, though sometimes I doubted my ability to do so. I worked out because I wanted to look tough. Hoping that if I appeared that way, no one would mess with me because I didn’t know if I possessed the courage to fight back. I only knew I never wanted to find out and that’s why I needed to look so strong on the outside because it countered how I felt on the inside.

Though this disease has taken away much of that outer strength, it has made me realize the inner strength I never knew existed.

Maybe I’m not Superman anymore, but ego-check, I never was.

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Thank you for reading this and if you’ve never heard Bon Jovi’s “Superman Tonight” please check it out! Great song! My nephew and I also love Bon Jovi’s “Love’s the Only Rule” Another road trip song we blast out loud!

“What If?”

“What if?” It’s a question an old college instructor taught that every writer had to ask herself. “It’s what creates ideas,” class was told. My best friend in high school (who remains my best friend to this day) used to contort her face in such expressions that would make Jim Carrey cringe, and ask, “What if I looked like this?” Or, she’d slump really low (mind you, she’s six foot one and half! Truly, she’s a beast) and move as if she had a hunchback and then ask, “What if I walked like this?” Laughing,  I’d yell out, “What if a lot of things!”
I look back now and of course my young teenage-self could have no way of knowing the path her life would take. I don’t know if it was foreshadowing or just a ‘wise beyond her years’ moment, but I couldn’t have been more right-on when I uttered those words over twenty years ago. Really, what if a lot of things?
It was recently suggested to me that I start a blog. I just published my first book, a novella, and was told authors need to have a blog. So, in addition to writing novels, novellas, short stories, screenplays, etc, writers also have to write blogs. Who has time for that? Well, apparently, you make the time. So, this is it. Welcome to my blog.
Though it may appear I’m doing this begrudgingly, the truth is, I’ve been wanting to start a blog for over six years and denial is the only thing that has kept me from doing it. What I considered blogging about was something I was trying hard to pretend wasn’t really happening and since I knew it’d be impossible to live through something while writing about it, without acknowledging it exists, I chose to ditch the blog and deny it as long as I could. Well, I can’t anymore.
I met a young woman at a support group recently and she told me about her blog and how over 15,000 people have viewed it and that it was just her way of ‘spreading the awareness.’ Wow. And at the time she’d only been diagnosed for less than two years and there I stood, eight long years into this disease and not a peep. Not a blog, not a fundraiser, nothing. She was doing her part, but I wasn’t even close to doing mine. I’m hoping to change that.
The disease is Myasthenia Gravis and I have it. It’s a muscle disease caused by an immune system that is attacking itself. I could tell you the scientific explanation, but basically, my muscles no longer work the way they’re supposed to. It’s hard to express what it was like sitting in that doctor’s office – a new neurologist – as he told me what he believed I had. He couldn’t say for sure because no ‘formal’ tests were done, but he didn’t need it. He saw the symptoms. “I think you have Myasthenia Gravis,” he told me.
“What? I’m sorry? Myas, what? Can you please spell that for me, doctor?”
I couldn’t pronounce it, but I had it. I didn’t even realize how weak I was until my doctor did a couple strength tests on me and I failed miserably. I couldn’t hold my leg up against even the slight pressure he applied, same with my arms, fingers and neck, even though I swore I was trying. I left the office walking on unsteady legs, weak arms, and with hands that could barely hold a pen long enough to fill out medical forms. With drooping eyes (because we need muscles to keep our eyes open) and my mother by my side, where she has been throughout this entire eight-year journey, we headed toward the car.
With an arm around my shoulder, she turned to me and said, “I think this is the disease that Ann Margaret’s husband has.”
Wonderful, I thought. I have an old person’s disease. Thanks, mom. But I knew she was trying to be supportive by putting a face to the disease, an old face, but a face nonetheless, to make me feel less alone because it’s scary being told you have something you never heard of and need a dictionary to pronounce.
But I knew I wasn’t right when I went to the doctor. We know our bodies and by then my symptoms were too obvious to ignore. My muscles stopped working. Just like that. My first symptom was a droopy eye. I was at a Bret Michaels concert with a friend (don’t judge me) and she noticed my left eye was half closed. I couldn’t lift it. Swearing there had to be something wrong with my contacts, I tossed the contact out my window and drove home using only my right eye, while a hand covered the other. But shortly after, other symptoms began to show.
I’m lucky to have the family that I do. My two married sisters left their own families to be with me that night. One even came with an armful of documents she had printed out from the internet. But not ready to read any of it, I stayed downstairs, in my room, crying in the arms of a relationship that held me while promising to always be there, a relationship that left six years ago.
I began my journey with, for the most part, a positive attitude while always recognizing there were others who had it much worse than I did, but the question, what if, has come up often. Not why me, because really, why anyone? But instead, what if? What if I never developed this disease? What if I’d been healthy when I turned 30, instead of preparing to undergo a surgery, that may or may not help, where would I be right now, eight years later? Surely, not sitting in a room, getting my monthly IVIG treatment.
I think about my healthy-self from years ago and all the things I was capable of doing, but never did. I was often shy and self-conscious, holding myself back. I wish I hadn’t. What if I’d taken those karate classes I’d wanted to? Or climbed a mountain? Or ran a marathon? A triathlon? Really, what were my limits? I had none. I only wish I’d known it and lived like it.
 What if I hadn’t settled for being just a spectator in life when I could have been so much more?
As a writer, I’m always asking ‘what if’ for a story. It’s exciting. It builds and creates plot, character development, but asking that question about your own life is profoundly painful and brutal.
I’m not sure what will become of this blog, but I hope it provides me with the peace and fulfillment I’ve long been searching for. And maybe, I’ll get so much from this blog that it’ll force me to ask myself, “What if I never got this disease, would I ever have started this blog?”
Thank you for reading this and if you’d like to know more about Myasthenia Gravis, please check out the blog of the young woman I referred to at Chronicallycheerful.blogspot.com

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