Mama Sick

This post was inspired by Mama Kat’s Writer’s Workshop.

When I saw the five choices for this week’s assignment I didn’t hesitate as to which one I would pick. I actually wrote to Oprah a few years ago asking her to have someone on her show who has more courage and a greater voice than I do, Christine Miserandino, who formed the But You Don’t Look Sick website seven years ago.

Christine’s website is a haven for people who suffer from Invisible Illnesses, and about 96% of all illnesses are invisible, so very sick people can look perfectly fine when seen by healthy people.

So, here I am on the Oprah Winfrey Show (which I don’t watch, so I am ad-libbing the format):

Oprah:  So Emily, tell me about your reason for coming here today.

Emily:  My purpose is to educate people about Invisible Illnesses and the people that suffer with them.

Oprah:  What is an Invisible Illness?

Emily:  Simply, put it’s any disease, illness or chronic condition that can’t be seen when you look at a person.  A lot of people can “fake it” by putting on make-up, nice clothes and doing their hair, and they don’t look sick at all.  I have Lupus, Fibromyalgia, Chronic Fatigue Syndrome, and Chronic Myofascial Pain, to name a few.

Oprah:  Well I know a bit about Lupus and know it can be a very serious disease, but you’re right, you look beautiful, you look healthy.

Emily:  Well that’s because one of your stylists did my hair and makeup for me.  But I can’t do my hair or makeup and haven’t put on any makeup or done my hair in about a year because that’s too tiring for me.  Some days I can’t bathe because it just takes too much energy.  I am housebound a lot of time because going out to even run simple errands completely drains me.

Oprah:  Wow.

Emily:  I also want to tell you and your audience that when people can’t see that some people are sick, they develop prejudices against them and make judgements about them.  Often a person’s own family or friends do not believe that their loved one is ill because they are not yet diagnosed, or they are diagnosed but they just don’t believe that they could be that sick.  They don’t believe that their friend or family is not only unable to work, but not able to get out of bed.

People also face other challenges.  They may have a handicapped placard or license plate and be able to walk, and people in the parking lot openly berate them for taking up a parking space that is meant for a “sick person”.  They may get dirty or confused looks from people when they use scooters or wheelchairs because they do not look like they need them.

A lot of people start to gain weight from either being unable to exercise due to chronic pain and fatigue or from certain medications.  Then they have to experience the added judgement of people saying, “Well, maybe if you lost some weight, you wouldn’t feel so ill”.

Oprah doesn’t have any advice for me because as far as I know she has never done a topic like this before so she is speechless, except to end the interview.

Oprah:  Well, you’ve certainly educated me and a lot of others (audience makes affirmations). How do we find out more?

Emily:  Well, one can simply google “Invisible Illnesses” or “Chronic Illnesses” and they will find hundreds of websites where they could educate themselves.  It’s important for everyone to learn about, because unfortunately, some day they may find themselves with an Invisible Illness.  And if you know someone with Fibromyalgia or someone who is chronically tired or in pain, learn a little bit about how you can help them, and ask them how you can help them.

Oprah:  Emily blogs about living with her illness while raising a child on her blog Mama Sick.com. Thank you so much for coming to speak with us today.  Coming up, we’ll be talking about fashion “do”s and “don’ts” for the fall.

Enthusiastic audience applause and music, cut to commercial about the latest drug for Erectile Dysfunction.

This book was given to me at no cost as a member of the From Left to Write book club.  This post was inspired by this book.

Cowboy & Wills by Monica Holloway is the true story of a little boy with autism who is brought out of his shell when he finally gets the pet he had wanted for a long time, a golden retriever puppy he names Cowboy.

When I was a little girl I really wanted a dog.  I made up silly promises to God such as if I didn’t look in the laundry hamper when I threw in my clothes, someday there would be a Lhasa Apso puppy waiting in there for me.  Hey, what do you want, I was seven or eight years old!

I didn’t get a dog.  But when I was about nine a stray Applehead Siamese cat started hanging around by my house.  She would walk with me to the bus stop and would be waiting for me when I came home. She meowed (Siamese cats have extremely loud voices) very loudly and I was afraid of her.  It was winter and my parents took pity on her and started to put food and drink out for her on our porch.  After that she owned our porch; meowing, hissing and spitting at me,  and I was so scared I would go in the back door of our house.

Even though I was scared, I still wanted her.  My dad was the last holdout.  On the night of January 2, 1980, I believe, we had a horrible snowstorm with several inches of snow.  My dad told my mother “If she’s out there in the morning and I can find her, I’m going to bring her in”.  He found her huddled in an appliance box that we were throwing out.

We put her down in our spare room.  Even though I was scared I thought, “If this cat is going to live with us, I have to be her friend”.  So I locked myself in with her, determined for us to get over our mutual fear of each other before I came out again.

She turned out to be my best friend and the smartest cat I have ever known.  She even knew how to turn a doorknob. I named her “Whiskers” because she had the longest whiskers I had ever seen, not that I had known many cats.  She was absolutely gorgeous.  The veterinarian judged her to be between three and four years old.  I told her all of my secrets and I used to cry to her when I needed to talk.  She was mostly my cat, although she did enjoy laying right on my dad’s chest just under his chin (very uncomfortable but he obliged her) while he watched television.

After about a year she began to get very sick.  The veterinarian told us she had diabetes and she would require insulin injections and her food would have to be monitored.  We could never leave her alone for more than a few hours and she would always have to be taken to a veterinarian whenever we went away.

My father took on the job of giving her insulin injections.  This was back in the early 80s and the vet told us that most people simply put their pets to sleep when told that they had diabetes.  But we loved her so much and she gave so much to us, that that was NEVER an option for us.

Since she wasn’t able to tell us how she was feeling, it was a constant guessing game to approximate how much insulin she needed and how much she needed to be fed every day. Sometimes she would go into diabetic seizures when her sugar was low.  We always kept a bottle of maple syrup and sweet supplements handy.  I remember one scary time when she fell down the staircase due to a seizure.  She threw up nearly every day.

You might be thinking that Whiskers was suffering and that it would have been the kindest thing to put her to sleep, but that wasn’t the case.  Most of the time she was playful and loving. She seemed to understand that she needed those insulin injections which sometimes were twice a day, and she never struggled during them.

She lived with us for ten years.  Towards the end she was at the vet’s more than home.  The vet loved her so much too that he no longer charged us!  She died between the ages of 13 and 14 and the vet said that was (at the time) the longest he had ever seen an animal live with diabetes.

My father was so devastated he swore he would never get a cat again, he couldn’t bear to love an animal so much and have it die on him, and he was true to his word.  But my mother, brother and I all have cats.

I don’t think I will ever find a cat as special as Whiskers.  She wasn’t my dog, but she was the pet that I was meant to have.

Yesterday we took Tyler to Sesame Place for the first time.   Luckily I had my handicapped placard that got us pretty close to the park entrance.  We had reserved a wheelchair, actually we had to pay for it, which really irked me, because I have never had to pay for a wheelchair at any zoo, mall, any attraction, ever. With Sesame Street claiming to teach diversity, you would think they wouldn’t charge a person to use a wheelchair, which was $15.00.  If I wanted an electric scooter it would have been $45.00!

The first ride we saw Tyler begged us to go on.  It was easily the scariest ride in the whole park.  Grant pushed me over but then I saw that I was going to have to stand on line with everybody else!  I think I wound up walking more than being in the chair!  Anyway, Tyler did great on the roller coaster, I loved it, Grant was scared shitless.

We went on some other rides:

And Mommy and Tyler got to meet Elmo:

The park is divided into two parts, dry rides and wet rides.  I thought Tyler would go nuts over all the water slides they have but Tyler said he didn’t want to go on any water rides (half the park, we are all wearing bathing suits, we are toting around towels and changes of clothes). We had lunch and while Grant was getting the food I asked Tyler why he didn’t want to go on any of the water rides.  “Water is dangerous,” he said.  If you’ve read this blog before you know that Tyler has an issue with any body of water except the bath tub, only I don’t know why. There’s never been any incidents and it frustrates the Hell out of me trying to figure out what the trouble is.

All of the talking and showing him the fun water rides on the map wasn’t doing any good.  He wouldn’t even go into the baby water fountain that was right in front of us while we ate. Before we packed it in for the day we took in an “Elmo’s World” Live show which Tyler really enjoyed. We showed him “Sesame Street” and then Grant pushed me into the souvenir shop where I felt like a tired gimp as I was facing a wall while they picked out a tiny Ernie and an Elmo ragdoll.

Now it’s time to return the wheelchair.  I don’t know how I’m even going to walk to the car. I’m thinking of asking Grant to push me when I turn around and see he is crouching on the ground. I go over to him to ask him why he is doing that and he is babbling, not making sense, all I could make out was “Can’t see.”  I went to the nearest concession stand and asked them to get an EMT.  Tyler and I sit on the ground with Grant.  Tyler is acting like this is an ordinary occurrence. An EMT comes and says, “Did someone get that wheelchair for him?”  “Umm, no, he was pushing me in that one, I have Lupus”, I’m laughing nervously at the insanity of it all.

They get one for Grant and push us both to the far away First Aid.  They put him on a bed, he’s suffering from some sort of heat related issue, made worse by the meds he’s on.  We knew about that but figured we’d be getting wet all of the time so he should be able to keep pretty cool.  They give him Gatorade, put cool packs on him, check his vitals.  As calmly as if he was asking if he could have an apple Tyler says, “Daddy, are you going to die?”  I felt so awful but they gave him ice pops, stickers and toys to play with and he was okay.

After a while they declared Grant fit to go home and they wheeled THE TWO of us out to our car.  As I was being wheeled I mentioned to the EMT how much walking I had to do and she said, “Didn’t anyone tell you?  There is a special entrance for people in wheelchairs, you don’t have to stand for anything.”

So how was our trip to Sesame Place?  I’m still thinking about the answer to the question.

This post was inspired by Mama’s Losin’ It!’s Writer’s Workshop.

When I started to think about this topic, I thought of how my ideas of a perfect summer have changed throughout my life.  How in my early to mid 20s the idea of hanging out on the beach, getting a fabulous tan and meeting a potential boyfriend was a pretty perfect image of a summer.  And now that I am a mother, my thoughts of a perfect summer revolve around what makes summer fun for my son. With our desires of perfection in a season changing as we age, I decided to go back to my own childhood for my five images of a perfect summer.

1. Playing, Playing, Playing!

The house I grew up in had a big backyard and front yard with lots of trees.  I was a fearless tree-climber and when I think back on it, wonder how I didn’t get myself killed, climbing as high as I could, on the thinnest branches I dared.  I used to play a lot with my brother, a year-and-a-half younger than me.  I remember playing a game called “Monkey”.  I was the Mama monkey and he was my baby.  We swung from trees and “ate” mud pies and weeds.

2. The Beach!

My mother grew up in Brooklyn and her parents were a member of Brighton Beach Baths beach and pool club.  She shared her love of the beach with us.  There were plenty to pick from along the Jersey Shore.  I loved walking along the beach collecting sea shells, and as I became older and bolder, riding the waves, holding on to my childhood best friend’s hand, screaming and laughing.  My parents took us to the beach on vacations and we also went to the beach during summer camp.

3. Television!

It wasn’t so much being able to stay up later to watch t.v., it was being able to watch the programs you missed when you were at school.  I liked getting up and watching t.v. before we were going to start our day.  Remember when we called old shows “reruns”?  Some of my favorites were being able to catch up on Gilligan’s Island, the cartoon and live-action show The Banana Splits and discovering Gidget! How cute was Sally Field?

4. Fairs and Festivals!

Summer was a time of county fairs and local festivals and I have lots of happy memories from riding the merry-go-round and beeping a horn in a car that went round and round with other cars and trucks, to being older and going on the more daring rides that were fast moving and dizzying.  I remember feeling deprived because my parents would only let us choose three rides, and yet now I do the same thing with my child!  And all of the food!  The sweets particularly stick in my mind (and to my teeth)…cotton candy and candy apples especially.

5. Me Time!

My favorite part of summer was having the freedom to just be me.  No school pressures, no schedules, no homework!  I was an avid reader and loved being able to read anything I liked! When I got into high school I really resented the “Summer Reading” requirements.  I didn’t need anyone pushing me into reading!

Summer was my favorite season growing up and even though I am now an adult, despite the heat and humidity, extra laundry from towels and bathing suits, and now being in charge of my own child’s summer, the wonderful memories I have back then still make summer my favorite time of year.  I still get sad when it’s “back to school” time, even though I am not the one going back any more!

I take part in the Sponsored Tweets advertising program, which up until now I was very pleased with, and will continue to be if they pull this advertiser.

I always believe in recommending or advertising to my followers only legitimate opportunities. This site had received 100% approval from other Tweeters. Normally, I do not even post these types of “Make lots of money by doing almost nothing” ads but I was stupid enough to sign up for it myself. Living in poverty will do that to a person. Today I looked on my bank balance and a charge of $139.95 was on my card from this company. I was still waiting to receive my “start-up kit” in the mail. When I called to complain I was told this was a legitimate charge because I did not cancel within five days and it was “clearly written” that the charge would be incurred if I did not cancel. Well, I certainly did not see it. This company claims to make you money, instead they charge YOU!

The customer service representative says she was authorized to refund me half of my money, but normally they do not even do that.  She also told me that if I had not cancelled, that charges would continue to incur on my card.

Here is an example of what you might see on Twitter:

“Stay at home Mom makes $7,658/Month Working Online. Read this shocking report to see how she did it! sponsored http://spn.tw/tukX3“

Three people clicked on my this ad that I tweeted. Who knows how many people have been taken in by this company? I am ashamed that I tweeted this to my followers who trust me and I apologize if anyone has been taken in like I was.

These are desperate times for my family and I and I am kicking myself that I could have done something so stupid.  I am so sick and I just wanted to bring in some money into my household. I am so angry at myself and besides this am now $70.00 poorer than I was.

The old saying, “You can’t get something for nothing” holds true, and again, if my tweet caused anyone to be taken in like I was, I am truly sorry.

(I know my font is all screwed up, but I wanted to get this out to my readers as soon as possible)

I’m about a month behind in posting our summer activities!  We went to this nearby annual event in July. I think we took Tyler once, though before he was born I used to go all of the time!  You know how that can be!  The food, rides and games are packed pretty tightly together so it wasn’t too bad of a walk for me and there were tables were I could sit down when I needed to.

It wasn’t as crowded as it’s been in years past and Grant and I can only blame the economy. $8.00 for a sausage and peppers sandwich?  And by the time you figure out what the tickets cost to get on the rides, they wind up being three or four dollars per person!  Maybe that’s just New Jersey?

Anyway, here’s Tyler on his first “roller coaster” ride.  He’s so fearless. We watched the ride first and some of the kids were screaming on it and had to come off but he said he wanted to do it.

Tyler was equally brave on the teacups with me.  He loved spinning around really fast.  I had thought my days of rides were over but I can still handle the teacups!

The last ride of the night was the giant slide which Grant didn’t learn until they both got up there that a new law had passed since last year and you could no longer slide down the slide holding your child. I was down at the bottom wondering what the Hell Grant was thinking letting Tyler ride on his own! He loved it!   I think he takes after the both of us in our love of fast and wild rides!

The fireworks, which are done by the same people who do the Macy’s 4th of July fireworks, didn’t start until 10:00 that night, so we decided against that.  We all had a great time!

Hey New York and New Jersey Moms, I am pleased to announce your family’s chance to win a family 4 pack of ticket vouchers to Sesame Street Live’s “Elmo’s Healthy Heroes!”

When Super Grover loses his superness, Sesame Street needs a hero! Never fear, Elmo and his team of Healthy Heroes are here. Teaching lessons of healthy habits through song and dance, Elmo, Abby Cadabby and your favorite Sesame Street friends will explore exercise, nutrition, sleep/energy and hygiene – all in a quest to put the “super” back in Super Grover. It’s Elmo’s Healthy Heroes to the rescue!

Performances are 90 minutes long and include singing, dancing and audience participation, plus a 15 minute intermission.

This contest is for these venues only:

Nassau Coliseum, Uniondale, NY

Thursday, September 16, 7:00 p.m.

Friday, September 17, 10:30 & 7:00 p.m.

Saturday, September 18, 10:30 a.m., 2:00 p.m. & 5:30 p.m.

Sunday, September 19, 1:00 p.m. & 4:30 p.m.

IZOD Center, East Rutherford, NJ

Thursday, September 30, 7:00 p.m.

Friday, October 1, 10:30 a.m. & 7:00 p.m.

Saturday, October 2, 10:30, 2:00 p.m. & 5:30 p.m.

Sunday, October 3, 10:30 a.m.

Westchester Community Center, White Plains, NY

Thursday, October 21, 10:30 & 7:00 p.m.

Friday, October 22, 10:30 a.m. & 7:00 p.m.

Saturday, October 23, 10:30 a.m., 2:00 p.m. & 5:30 p.m.

Sunday, October 24, 1:00 p.m. & 4:30 p.m.

This contest will run until August 29th 11:59 p.m.EST.

There are two ways for you to enter:

1.  Leave a comment below.

2.  Tweet out this contest and in a separate entry, let me know that you tweeted it out.

Important Thing to Remember About This Contest:

The winner of this contest will receive ticket vouchers which must be exchanged live at the box office for actual tickets.  It is in the winner’s best interest to exchange these vouchers for tickets at the box office as soon as possible in order to get the best seats available.

P.S. Increase your odds by checking out my partner in crime’s blog, Ramblings of a Semi-Conscious Mastermind Mommy, as Jennifer is also giving vouchers away for the same performances!

If you are not a winner and still want to see the show you can enter the code ERNIE online at ticketmaster.com to receive $3 off each ticket! (excludes Gold Circle, VIP, Sunny Seats, and Opening Night performances)

Good luck!

This post was inspired by the writer’s workshop from Mama’s Losin’ It!

Dear Mommy,

I know a few weeks ago you and daddy sat me down and told me that you had a “Disease”, which is something that will never go away.  That you are sick, but not “sick, sick” and that it doesn’t mean you are going to die.  It just means that sometimes you are in pain and that’s why you need ice packs or heat, and that’s why you need to use a wheelchair, and sometimes, well every day, you need to nap so you can be a good mommy and have more energy to take care of me.

I’m not sure I understand because you are the best mommy there is.  You always make me yummy food, especially pasta and yummy snacks with fruit.  You are the most beautiful mommy with the prettiest voice.  I love singing with you, doing puzzles with you, eating lunch out with you.  Pretty much doing anything with you is fun even though we can’t always go out, I just like being with you, even if we are just watching t.v.

My birthday is September and yours is in October and I want to give you a WordGirl party because I know she is your favorite superhero.  We can have a Word Girl cake and balloons and you can wear your “Super Mommy” pajamas.  Daddy says I can dress like Captain Huggyface and he will be Beau Handsome.

I’m not quite sure what you meant about having a disease because nothing has changed.  You are still the best mommy in the whole world and I wouldn’t trade you for any other.  Most important to me is how much you love me.  You are always kissing and hugging me and telling me that you love me and you make me feel happy when you say how smart I am and how proud you are of me, and that I am your favorite person in the world.  You are always smiling and never get angry.

I love you too.

From,

Tyler, who will be four-years-old soon.

So, we did it and I lived to tell the tale!  Tyler woke up around 6:45 on Saturday morning and when I told him we were going to the beach he started crying and saying he didn’t want to go. Weekend mornings are Tyler, Daddy and television time and the two of them look forward to it.  Part (okay, most) of me wanted to just say “Okay, we don’t have to go if you don’t want to” and drag myself back to bed but Tyler hasn’t been to the beach enough to know how wonderful and fun it is.  I told him we weren’t going right now so he could watch some t.v. with Grant and that seemed to satisfy him.

We got on the road at around 9 a.m.  Normally, I am bothered by my mother’s non-stop need to chatter but this morning I needed it to keep me awake.  At one point we heard from the backseat, “Guys, calm down”.

When we got there at 10:00, the beach was already  pretty crowded and all the handicapped parking spaces were gone.  Ocean Grove does have a free parking lot so we got a space there. My first worry had come true, the long walk to the beach with our stuff.  We made camp and unfortunately the ocean was very rough along with high tide coming in.  Tyler seems to fear all bodies of water besides the bathtub and this was a day it was even hard to walk along the shore line.  That disappointed me because I had this image of me walking along with my son with the water just tickling out feet.

But his desire to make a sandcastle was strong enough that I convinced him to go close enough to where the sand was wet.  We were digging, sitting on a towel when out of nowhere a wave came and knocked Tyler and I down flat.  People started running to move their beach stuff.  I grabbed for Tyler and pulled him up.  He was wet up to his neck, frightened and crying.  As if he didn’t fear the water enough!  My mother and I kept telling him he was okay but that did it for being anywhere by the water for the rest of the day.

We went back up to where our stuff was and Tyler was satisfied enough to make sandcastles from the water that had flooded his bucket and that my mother brought back to us.  We put little shells and parts of shells and seaweed to decorate his architectural masterpiece.  At this point I am pretty well spent, already.  My joints were hurting wherever the sun hit them even though I tried to stay under the umbrella.  My hips hurt too much to lay down.  I felt sad that it had to be like this.  Sad that my illnesses always color my good times with Tyler.   But Tyler did say that he was having a great time so that helped.

I didn’t perk up much after lunch so Tyler and my mom took a walk on the boardwalk. Conversations heard and weird stuff:  “Let’s go have a cigarette while we put more sunblock on the baby”.  And a woman with a tattoo that looked like she had a garden growing out of her vagina.  Ewwwww!

When Tyler and my mother returned, thinking of our long trek back to the car I told her it was time to go.  We had been there three hours.  My mother balked, she’s a real beach goer, but I said, “Mom, I am in p-a-i-n”.  Shortly after getting on the road I stopped at Dunkin Donuts to get an iced caramel latte so the sugar and caffeine could power me home.  Tyler fell asleep immediately.

Despite the pain and exhaustion I am glad I did it for Tyler.  He’s what it’s all about.

My mother, Tyler and I before the wave from Hell!

Tyler showing off his first sandcastle!

Tyler cuddling with Mommy. Nice ass, Mommy!

I hate Mondays but not for the reason most people do as I no longer work, so I don’t have what my husband refers to as “Sunday Stress” leading to Monday Morning Dread and Panic.

For me, every Monday is the same.  I wake up exhausting and hurting after taking care of Tyler all weekend long.  I drag my ass around whenever Tyler gets up, giving him breakfast, dressing him, making his lunch, etc.  I kiss him goodbye and tell him to have a good day and Grant brings him to school.  The only saving grace I have while I am getting him ready is knowing that I can go right back to bed afterwards.

Then I take my pain meds and psychiatric/sedation meds and go back to sleep or rest for a couple of more hours or so.  I listen to Howard Stern while I fall off to sleep or just sort of doze and if I am just laying there after a while I get up and get the coffee going.

I go on my computer, check my Twitter and emails and try to get enough coffee in me to start doing laundry.  I make phone calls, fill out paperwork or maybe l go to a doctor’s appointment. I am in disability limbo, waiting for a hearing date.

Every Monday is the same and pretty much has been ever since I stopped working nearly two and a half years ago.  It doesn’t seem like that long and yet it is.  Every Monday is the same.

Only…it isn’t.

Even though I am doing the same things, time IS passing and my savings are being drained with every Monday that passes.  My child is growing older.  My debt is growing larger.  My hopes are dimming and so is my faith.

It is an illusion that every Monday is the same.  There are so many factors that are beyond my control and yet, after taking my meds and sleeping those few hours trying to recover, I get up and fight the good fight for my son, husband and I, hoping and praying that next Monday will be different.