Tuesday, August 25, 2015

Why Do I Have to Take My Pills, Mommy?

He looks over at his brother and back to his plate. Then asks, "Why do I have to take my pills?" He says this to me inquisitively as if a light has appeared above his head realizing his older brother next to him did not have the same mealtime ritual.

What do you say to a three-year-old with Cystic Fibrosis when he asks an inevitable question? One that you try to avoid thinking about but also one that you can't stop thinking about. A parent of a child with CF must be one of extreme patience who realizes every action and reaction can make a huge difference in the response of your child.

It is at this point when the question hits hard. I sink into it for a while. A moment to let it settle into my insides as a heavy sigh escapes from my breath. "Well, ..." I begin...as I think out a response...

He waits patiently for the response behind his turquoise eyes and pale hair. Its still hot for late August and he sits in shorts, no shirt. I can't help but notice the hint of ribs against his lean, untanned body. The doctor says he is in the 13th - 15th percentile for his age and weight. The last three appointments with his pulmonologist, she has expressed concern over this- "Weight and lung function are tied together. Just see if you can get him to eat 500 more calories per day." We shared a food chart of his eating habits. This last time, we met with the dietitian on staff. Its all about adding in more calories, boosting fat. We feed him five times a day, packing it in with each meal and snack and he keeps getting taller. This percentile isn't changing. We know that she might suggest the food tube next so we are adamant about getting as much food into him as possible to get him to gain weight.

My tears saturate my eyes. I turn away from him for a moment, away from the dinner table, away from the four capsules of Creon in a small cup near his square plate. I bite my cheek for a moment and swallow hard. The tears slide down my throat and I swallow all my thoughts about it.

At this point, I realize that however I respond will determine how he eats his meal. He's already a slow and very picky eater, but what I say might change how he eats all of his dinners and breakfasts and lunches and snacks from now on. What I say had better be good.

The food waits patiently on his plate- two pieces of chicken sausage with ten grams of protein in each link, fresh cut strawberries, some spinach, a few pieces of cheese and a bowl of Honey Nut Cheerios cereal and milk enhanced with heavy cream and four scoops of calorie-enhancing powder. This is a common meal, nothing new today. He's read about digestion. He clearly understands the process and how we get energy from food. And this meal is one he's eaten many times before without the need to ask this question. Why now at the dinner table before bedtime?

Only moments have gone by but it feels like my mind has been going through this moment forever. Planning, thinking, rethinking. I wonder how much of an answer is too much, how much is too little. Is this the inevitable moment when we sit him down and explain Cystic Fibrosis? This dreadful moment his incurable illness is revealed? No. It is too soon for this type of talk. Much more planning goes into that type of talk than the fear that he might decide he doesn't like chicken sausage and strawberries and spinach and the whole lot tonight because he "doesn't like them anymore." It has to be enough of a response to satisfy his curiosity. It has to be understanding enough that he doesn't feel strange or different because he has to take pills for every meal and snack. It has to be broken down enough so that his three-year-old mind can understand. Would making mention of the digestive process help? Explain how the enzymes actually work? Is this too much at the dinner table before bed? What about the tone of my voice- more serious or lighthearted?

I turn toward him while preparing a cup of tea and decide to use a casual tone of voice. I need to make him understand that it is just something that is as ordinary as talking, or chewing or breathing. He looks up at me with those blue eyes and inside I melt. His brother looks at me too; his hazel eyes searching for an answer. I note the obvious contrast between their two silhouettes as they sit side by side. His big brother is exactly 17 months older and his height and weight are in the 80-90th percentile. He's almost an entire foot taller and more than fifteen pounds heavier. He doesn't have CF.

I pour the hot water into my cup and dip a tea bag into the water to give myself one last moment, one last thought of how to say this. And then I go for it:

"Some people take pills with their meals and snacks and some people don't." Then, I shrug to make it seem like no big deal.

I look waiting for his response. Will he ask another question? Will I need to go further down the rabbit hole?

"Okay mommy," he smiles. "I love you." Then, popping all four pills into his mouth at once, he drinks them all down with one gulp and then starts to spoon in his cereal.

"I love you too, buddy," I say as I lightly sigh relief. But I can't help but wonder, when this will come up again.

Friday, August 21, 2015

Why DOES the Government Hate the Disabled?

Until my son was diagnosed with Cystic Fibrosis when he was 10 days old, I hadn't given much thought to the plight of the disabled and the journey they take. My husband and I are in our early 30s and we spent our earlier lives together dating and living life with our friends. But since the early months of my son's diagnosis (he is now 3), I have spent at least four hours every week on the phone, at least two weeks a year on paper work and countless hours doing medical treatments(our vest system says over 300 but that doesn't count the last two years before he had the vest and we did manual physio) and visiting at least four different doctors between 4-6 times a year--- and this is when there are no major medical issues. 

Recently, I have come to face major roadblocks in our life:

1.    Rejection from Medical Disability for our child
2.    Rejection for Child Care Works services through CCSI
3.    Rejection for monetary subsidy from the government
4.    Living in constant medical and credit card debt

Granted, you might say that each person is a grown adult and is responsible for taking care of the family, and everyone comes on tough times- You're right. I shouldn't complain. We are blessed that I have a salaried job here in the U.S.- it is not minimum wage- but a living wage with medical, dental and vision benefits so that I can take care of my family. But, I also use my remaining evening hours to work a second part-time job so that my husband can go to college and we can avoid daycare for our two children (ages 3 and 5). But what about parents those who aren't so lucky?

I read posts on private Facebook forums all the time from parents looking for money or used medical equipment, searching for alternative medications or deals on vitamins, attempting holistic methods and seeking advice on how to balance working numerous jobs just to make ends meet- all from a place of fear. This fear permeates the CF community because every action one takes can change a pathway, one that can lead to the ultimate longevity of your CF'ers life.

In Pennsylvania under a loophole that considers my son disabled enough for medication (somewhere in the depths of medicaid), my son gets his specialty medications, medical equipment and doctor's visits taken care of. But, this same government loophole that allows him to receive these benefits doesn't actually consider him "Disabled" under the guidelines of government "Medical Disability"- sound strange? That's because it is.

Maybe its because CF is different for each individual, meaning the symptoms can range in severity. My son has DDF508 which is the most common form, but my son is actually lucky in terms of having CF. He's only on six - seven different medications and vitamins, including:

1. Nebulized (inhaled) treatments that can take anywhere from 1-5 hours daily,
2. Specialty CF vitamins that add extra A, D, E and K to his diet,
3. Enzymes that have to be taken with every single meal that includes any fat or protein (which is every meal so he can maintain or gain weight on a special hi-fat/hi-protein diet), and
4. A specialized antibiotic half of the year to combat a nasty infection called Pseudomonas Aeruginosa that doesn't affect non-CF folks, but destroys CFers lung functions and progresses lung illnesses more quickly.

This still renders us in a position where one parent has to stay home for his care. And still, on two to three occasions after applying for various services, we have received rejection letters.

What is the government's requirement for being disabled if you have Cystic Fibrosis? According to Social Security website:

"Disability" under Social Security is based on your inability to work. We consider you disabled under Social Security rules if:
  • You cannot do work that you did before;
  • We decide that you cannot adjust to other work because of your medical condition(s); and
  • Your disability has lasted or is expected to last for at least one year or to result in death.
For each of the major body systems, we maintain a list of medical conditions that are so severe they automatically mean that you are disabled. If your condition is not on the list, we have to decide if it is of equal severity to a medical condition that is on the list. If it is, we will find that you are disabled.  

Reading into the CF requirements in Section 103.04, you can see that SSDI Medical Disability guidelines for minors with CF state that without a minimum number of progressively worsening of symptoms or hospitalizations annually and a regular scheduled dose of antibiotics, a child is rejected from being eligible for medical disability benefits. Additionally, just as an extra little dagger in the side from Uncle Sam: even if your child did meet those terrible and scary requirements- the parent's annual salary is factored into the equation. While our son might be considered based on having "persistent pulmonary infections," I make a moderatish income (a little over 40,000) that is actually considered too high for him to receive the benefits. The government required guidelines always throw in an income requirement for good measure. So does one's "disability" depends on how much money you make according to the government?

Maybe it is just that the program is for SSDI. Social Security has always been based on income guidelines, so what about other government-sponsored programs? 

My other son who does not have CF at all cannot receive aid to attend a government sponsored preschool because---according to the rejection letter and agency representative for the CCIS Child Care Works Subsidized Child Care Program, "each adult in the household is required to work 20 hours a week OR 10 hours plus 10 weekly college/school hours." This is a good thing. It shows big brother you are attempting to make ends meet, but still aren't quite making it and as a result, you might need some extra help... but what about families where that ideal situation doesn't work? Our son's health and our family's circumstances rely on my husband being able to stay home with our child. The representatives answer? A sigh and shoulder shrugged answer, "Well, they don't take disability into account for this program." And once again, we are rejected from this program as well. It seems to me that these denials don't just hurt the CF patient and his/her care, but additionally other family members suffer as a result of this blatant back-turning and rejection of families in need.

Where's the logic in all of this? Let me see if I can break it down to make sense. I work two jobs and my husband is attempting to better his circumstances by being in school for 9 credit hours. Because he isn't working at least ten hours a week in addition to 10 school credit hours, even though most schools work on courses with three credits each, we are rejected again. And just in case he did get a job for ten hours a week and threw in a one credit gym class for each semester, we wouldn't meet those pesky income guidelines again because we would make too much money.

So DOES the government hate the disabled or do they just hate giving money to help their citizens? It appears to me considering this unabashed and outright disregard for the suffering of families both financially and emotionally, the government cares only about hoarding fistfuls of money while families floating near the poverty line suffer with the constant fear of losing their homes, livelihood, personal pride and health.

Let's look into this further before we make a hasty decision about the American Government. Let's see some facts. Let's start by examining what Cystic Fibrosis is first: 

(1) Cystic Fibrosis is a hereditary disorder passed genetically to their child from two parents who are carriers of this gene. Parents who are both carriers have a 25% chance their child will have CF, 50% chance their child is a carrier of the gene (sometimes having symptoms) and 25% chance that they will have a healthy child without this illness. Historically, it is thought that this hereditary disorder came from the human body's natural adaption to avoiding Cholera. Today, it is the #1 genetic disorder in the white community with over 30,000 people living with the diagnosis and 1,000 more annually being surprise diagnosed after their child is born even though it is easily found with testing during pregnancy. By the way, this genetic disorder is it is not required to be mentioned to couples during regular optional screenings in American hospitals.

(2) The illness itself is based on a defective gene that contains a mutation which causes incorrect communication within your own body's cells. This microscopic confusion causes water and salt to improperly move between cells resulting in thick gunk build up around major organs causing them to trap bacteria, cause infections, blockage and eventual organ and system shut down. The organs and systems affected are: the lungs, pancreas, bile ducts, liver, sweat glands, digestive system and reproductive system. So what does this all mean?

-Only half the population of CFers are older than 18 and this "life-threatening" disorder results in death with an average lifespan between 30-40 years old.
-All CF patients eventually need lung transplants
-80% of CF patients have little to no pancreatic functions- meaning they have to take medications to aid them in food digestion just to survive without starvation and nutritional depravity
-Many are required to have food tubes to maintain the high caloric intake required to stay healthy- about double the ordinary person, for adults with CF that means 3000-4000 calories for kids that's about 2000
-New evidence and hospital guidelines every year from the CF Foundation suggest that the more often a CF child is exposed to respiratory and other illnesses, they are more likely to have a faster disease progression, and
-Bottom Line: There is no cure for Cystic Fibrosis.

It seems obvious that the diagnosis of Cystic Fibrosis alone should be the sole deciding factor in one having a disabling condition by any standard, right? But its not.

Where my point lies is within the blatant disregard for taking into account a family's circumstances in rejecting them from being eligible for services that directly relate to them, especially when these parents already suffer every day thinking about how they will pay for their child's $11,000 bill for a 30- day supply of enzymes... or the $100 co-pay per month for life-saving antibiotics... or the money for $1000 grocery bills and nutritional supplements to avoid having a child with a food tube....they wonder how they can possibly avoid another hospital visit when they have to send their child to daycare with sick kids during flu season... This emotionless group of lawmakers deny these parents aid when they are forced to deal with the terminal nature of their relationship with their child before their child can even walk, crawl or eat solid food.

Instead of the aid they need, every year these 1,000 new babies are lumped in with everyone else and their 30-40 year life span suffers. Just do a quick google search or look on a Facebook page for pleading parents attempting to make ends meet, attempting to keep their kids out of the public school system, trying desperately to avoid giving their child a food tube because meal planning is tough when two parents HAVE to work to survive, stay afloat monetarily AND take care of their special needs child.

Shame on you Government Employees. Shame on your purposeful rejection-based policies. Shame on your hatred for those who can't make ends meet. For those who give every penny for their disabled child out of love and hope for one more day with them, I stand with you.

Share your story below and let everyone know how this government has treated you when you needed them most.

Sunday, September 21, 2014

A Politically Incorrect Christmas

You can say there’s no such thing as Santa, but as for me and the audience of “The Eight: Reindeer Monologues” at Paper Kite Press in Kingston on Dec. 12 , we believe we’ve seen the real Kris Kringle and his eight reindeer … in a darkly comedic and sinister work environment.

So this is Christmas … and what has he done? Mr. Claus has been a sadistic pervert who molests poor little reindeer on the job while Mrs. Claus has been drinking herself into a daily eggnog stupor and pining over the male reindeer, making an embarrassment out of herself during holiday celebrations. Who knew the North Pole had so many problems with sexual harassment in the workplace?

As the accusations begin to unravel, the eight reindeer, a group of seriously flawed characters, stand before the audience, much like at a news conference, each professing their own points of view in this extended one-act directed by Ilvin Nieves and Kimmie Wrazien of the Bracken Theatre Company.

Upon the opening of the play, Alicia Nordstrom sets the tone and plot. Nordstrom plays the lead reindeer (Dasher) in the “Elite Eight” and does a convincing job of ranting like a senior-level worker about the ridiculousness of the accusations in her workplace and gushing about her amazing on-the-job feats.

In the second monologue, Ilvin Nieves “makes the yuletide gay” with Cupid, the only openly homosexual reindeer in the elite eight. Nieves convincingly flames around the stage, dirtily discussing Santa’s secretly placed candy cane tattoo and North Poles. Under these strange circumstances, Neives convinces us that Cupid is happy that he is the only reindeer that hasn’t been molested by Santa, and his overly boisterous tone hints that his open homosexuality is what keeps him safe.

As the monologues evolve, the play becomes more sobering as confessions and loyalties become clear. The character of Blitzen is an extremist who is protesting Christmas this year and is bent on a walkout. Unfortunately, Donna Vojtek’s Blitzen was timid and line-reading compared to the angry feminist the audience might have expected from such powerful lines as, “When a doe says ‘no,’ she means ‘no’.”

Also, personally embarrassing situations become clear as the audience is lead to wonder, what is the truth about how Rudolph got to lead Santa’s team that year? Apparently, once a part of the team, Rudolph did join in the reindeer games and was permanently traumatized as a result. The tension in the room rises as Billy Joe Herbert, who plays Donner, Rudolph’s guilt-ridden alcoholic father, distressingly admits the sick details. While we do feel pity for his character, Herbert himself needs to work a bit more on his blue-collar noon drunk.

After the complex and unrepentant Wrazien (Vixen) speaks a captivating fall-down wine-drunk, emotionally detached and unsettled final monologue, the audience members are left to squirm uncomfortably in their seats. Especially when they hear her profess a very real and distressing question: “Why is it a woman is only a slut if she meets with some degree of success?”

Overall, all the actors, including David Giordano as Hollywood (formerly Prancer), Will Moore (Comet) and Christine Skiro (Dancer), bring depth and emotion to their roles so well that you may forget that they’re wearing bright red antlers. This play was definitely not for children, and now that I’ve warned all you friends and neighbors to watch out for a man who drives a sleigh and plays with reindeer, let’s just hope this holiday’s a good one without any fear.

(Photo thanks to www.theweekender.com )

Monday, May 11, 2009

Zine Workshop Flyer

At Paper Kite Press in Kingston/Edwardsville.

Saturday, April 11, 2009

Remembering Snail Mail

Wendy from A Passion for Letter Writing and a handful of her readers have begun a correspondence with me based on Wendy's writing prompt called Let's Freak Someone Out!

I received 5 letters: Bonnie from Pittsburgh PA, Lisa from Flower Mound TX, Danielle from Rochester NY, Ilona from Newport RI, and Monica from Chicago IL. Each letter was more exciting than the last. Thank you for the amazing letters. I'll be getting back to you all soon.

In this throwaway world, do you even remember the last time you actually got something in the mail that was worth keeping? Something that wasn’t a bill? Something that wasn’t a pre-scripted card? When was the last time you actually scripted or received a letter? Not a business letter such as a cover letter for a job, but a hand-written cursive letter just discussing or contemplating the day’s events without fear of judgment?

For most of us, we might recall that we had a pen pal in elementary or middle school. I personally remember for over a year, I wrote to another girl my age that was living in England. While, I’d lost contact with her in my teens, especially after learning to drive, I still kept all of her letters in a box under my bed. Last fall during a cleaning spree, I pried open the box of memories and rediscovered them. As I read through each of the letters, I was flooded in memory. While her letters took almost a month to arrive, as soon as I mailed mine, I would check the mailbox excitedly for her response in the red white and blue international envelope with the words “Par Avion Air Mail” strewn across the front near my scribbled name. I recall once, after the lengthy correspondence, I received a phone call from her. We talked for approximately 2- 5 minutes and then her phone card ran out. It was one of the most exciting moments of my life. It was more wonderful than any of the other random memorabilia (blank concert wristbands, photographs of strangers, the dateless dried flower) that remained forgotten inside the box.

Over the last month, I have been reading “Love in the Time of Cholera.” The majority of the important correspondence appears in letter form between the two main characters. Suddenly, I had the striking realization that letter writing had become a lost art form. Since the only excitement in the post office box is a paycheck (as long as you don’t have direct deposit) and the hopes of a random postcard leave you feeling quite depressed since you aren’t the one on vacation, in an effort to regain enjoyment of opening the post box, I have begun corresponding. Now my words are inspired by the gentleman I write who lives in Kingston, a mere 15-minute drive from my home.

I began sending and receiving letters almost three months ago. This might be seen as ridiculous considering the more simple forms of communication: phone call, email, Facebook, MySpace, text messaging, and meeting in person. However, pre-generated text and email is easily disposed of, phone conversations are faceless communications, and I am convinced that the importance of words is lost to the ease of innovation and business side of communication. So while the “snail mail” pace of communication is a laughable amount of time considering the day or two it takes the postman to hand over my thoughts from days prior, there is just something about the magic of the letter that I keep close to my heart. It may be the swirls and swooshes that slow the mind when I make pen strokes that force me to consider spelling, word choice, and most importantly, a deep thought or two, because those things that are easily brushed over with spell checks, networking business letter structures, and the stiffly blocked fonts of computer programs. It may also just be the ever-so-rare excitement of receiving a letter.

No matter what the reason, this letter writing must continue. Receiving a handwritten letter is reliant upon a meager.43 cent stamp. And so, I am giving all writers a call to action. Hunter S. Thompson’s books did not take off until after the Fear and Loathing film. Many were published posthumously after carbon copies of every letter Thompson ever wrote were found, thus publishers discovered that the author had major talent beyond journalism. So this week, write one letter to someone and mail it from your local post office. Write a friend, pick a name out of the white pages (that’s the phonebook for you who use 555-1212 or 411 too often), or even write yourself a letter under a different name. Write the letter in your own handwriting and pour out your day, your heart, your soul, your hopes, your beliefs, and your dreams. Try writing more than one page and staying on topic.

*Published in The Weekender

Other interesting links:

Give your best wishes to Ilona's sister Esmerelda and future brother-in-law for their wedding:

Give this guy your address and he'll write you a letter: http://www.iblogbetterthanyourmom.com/2009/04/letter-writing-project-day-1.html