Mama Sick

When I was four-years-old my mother took me to see The Nutcracker and I never forgot about it, the beautiful music, the scenery, the dancing…

Now I am pleased to offer you your chance to win a family four pack of tickets to see the ballet at the State Theatre in New Brunswick, NJ!

The American Repertory Ballet (ARB) brings the perennial classic to the State Theatre with Tchaikovsky’s magnificent score performed with a live orchestra, new and traditional choreography, and a cast of over 100 performers. It’s a great way to introduce your children to ballet!

ARB’s professional company will be joined by students from Princeton Ballet School to tell the story of a young girl and how a mysterious gift brings about enchanted dreams and magical scenes.

These tickets are for the Saturday, December 18th, 1:00 show.  Please do not enter this contest if you cannot make this day and time.

Entering the contest is easy and you have to chances to win:  1. Comment below and 2. Tweet out the contest and let me know you have done it by entering again.  Thus, you will have two separate entries!

The contest will run until 11:59 p.m. EST, Friday, December 3rd.

For more information about purchasing tickets for the ballet, visit the State Theatre’s website.

The performance schedule is as follows:

Saturday, December 18, 2010 at 1:00 PM

Saturday, December 18, 2010 at 4:30 PM

Sunday, December 19, 2010 at 1:00 PM

Sunday, December 19, 2010 at 4:30 PM

Good luck!

Congratulations to Monica Brand, winner of a family four pack of tickets to the Nutcracker!  Monica (#5) was chosen by random.org.

As we near Christmas, I look at my living room and approach the holiday with dread. Already our living space is scattered with toys. Actually, it appears that someone has ransacked our home and decided there was nothing worth stealing so the mess remains.

Tyler still plays with every toy that he has ever gotten throughout his four years on earth, only he plays with them differently now.  For example a toy barn becomes a hideout for villains. The Laugh & Learning Home is now a skyscraper for his action figures to climb on.  Every time I look at or think about a toy that I might throw away, Tyler psychically starts playing with again.

Broken toys?  Tyler doesn’t like to throw them out either because he “feels bad” for them.

I don’t even know how we are going to put up the Christmas tree, but perhaps a Christmas miracle will occur, when I tell Tyler that if he wants new toys he’s got to get rid of the old toys (my new strategy), and maybe then he will finally relent.

Tyler modeling what else you can do with Mr. Potato Head accessories, plus part of the load of toys behind him!

I have long debated what is the worst for me:  Chronic pain or chronic fatigue.  There have been times when I have been literally screaming and crying, a “10” on the pain scale, but for the most part my pain is such that I can get through the day with the help of narcotics.

So I think chronic fatigue is the worst for me.  There have been times where I could not get out of bed or off the couch.  When I have slept and have woken up feeling even more exhausted.  I sleep or rest about 12-14 hours a day.  It is so hard when I have to make dinner and I’ve got little or no energy.  Or when I have to give Tyler a bath.  Or when Tyler asked me to play with him and I just CAN’T.  “You never play with me”, he says.

Today I did some grocery shopping and there were no scooters available.  I had to walk the supermarket.  Sometimes I get so tired in the supermarket I start losing my mind, getting confused, and have trouble making choices that should be easy. Often I run a couple of errands and am completely exhausted by them. Sometimes I am so fatigued it makes me feel nauseous and I want to cry about it.  Most times if we go somewhere and my husband takes me in a wheelchair, I am STILL exhausted from it.

Yesterday, I THOUGHT I could run some errands…I was wrong.  I tweeted, “The worst thing about chronic illness is that you don’t know how much is too much…until you’ve done it” and I got many retweets, sick people all in agreement with me.

Most days I don’t know how I am going to get through them.  My home is such a wreck, I barely have enough energy to do laundry or to make dinner.  There is no way I can get to projects like going through stuff to throw or give away or cleaning my refrigerator or straightening my linen closet.  Our home looks like someone broke into it and was searching for something he never found.  It makes me sad to see it look this way.

Sometimes I feel I am wasting my life away resting and sleeping.

Which is worse for you?

Why are you burned out?

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

I am completely burnt out on my quest for long-term disability.

I used a mentor who helped me fill out these matrices which listed my illnesses and symptoms and how they affected my ability to work and live.  It took me a very long time, between doing laundry and paying bills and being sick.

I applied in October of 2009 and they denied me.  One of their reasons was, “We know you can’t the job you are doing now, but we believe there is some other work you can do”.  I worked at a desk job, how much easier on your body can it be?  And what kind of work did they think I could do?  Where were their suggestions?  I didn’t feel that they even READ my application for them to say that to me!

In New Jersey they deny approximately 86% of people the first time.

Then I get a lawyer in late January.  The next step is the Reconsideration process. Pages and pages of stuff they want you to fill out.  It took me eight hours.  I sent it to my lawyer who asked the Disability Office what my bar code is so that they might send them the information.  The Law Office never gets my code and I am DENIED without Disability ever READING my paperwork!  I want another Reconsideration, I say, but this is not possible, they don’t do that.

The next step is the hearing process where I go in front of a judge.  It can take up to 18 months to get a hearing!  They give me more paperwork.  It takes me about eight hours to complete over a three month period of time.  And now I am just waiting for my hearing.

Meanwhile I am only getting poorer and into more debt.

I have spent hundreds of dollars copying my medical files.

I have spent so much energy chasing my doctors telling them to please fill out their forms.

My friends and former co-workers have written letters.

Did I mention how extremely depressing it is to write in great detail about how sick you are?  Sometimes I cried when I was filling out their forms.

Over this journey I have heard incredible stories.  Like the one where they denied someone who needed a liver transplant.  Or the one where they told a lawyer she was not qualified to be a lawyer any more but that she should be able to work in a laundromat.

I cannot imagine someone would fake being sick to try to get disability because this is the hardest job I have ever had to do.

I think my food stamp problems may be coming to a resolution soon.  I finally talked to the person who looks over your application and comes up with the dollar amount.  I told her that nothing has changed and if anything we are doing worse so why were we decreased?

She said, “Because you don’t have dependent care”.

“My son is in daycare”.

“But why when neither of you is working?”

I explained to her that we were both disabled, going through the disability process and she said if we could get doctors’ notes to attest to this then we may even qualify for more stamps than before!

There are notes from doctors in our file but none specifically stating that we can not care for Tyler on a 24 hour/7 day a week basis.

It just shows that it pays to call, advocate for yourself, ask questions, because no one else is going to do it for you.

Hoping this follow-up goes smoothly!

Last week as part of the ChronicBabe blog carnival I was asked to write about Gratitude.  I decided to write about the people in my life whom I was grateful for, but after I sent it over to them, I realized I had forgotten the most important person in the world to me, Tyler!

I am grateful to God first, that despite being sick I was able to become pregnant and have my baby.  God gave me such a special little boy.  Before Tyler, I never knew that it was possible to love someone so much.  To actually be “in love” with a child.

I don’t know where I would be without Tyler.  Times are so tough for us right now, what if there was no Tyler, would I still want to be on this earth?

Tyler is the reason that keeps me going; keeps me moving despite the pain and depression I have.  I know Tyler needs me.  I know he would not be better off without me.  As hard as it is, as poor as we are, I am Tyler’s Mommy and I don’t believe he would have it any other way.

Despite the usual temper tantrums that every kid has, he is simply a wonderful person. People have told me that about him.  That he is special, that he is very smart, so it’s not just me bragging!

I love looking at life from his eyes.  My childhood was a happy one and when I read him Curious George or any of Richard Scarry’s Busy Town books, when I watch It’s the Great Pumpkin, Charlie Brown, or take him to a carnival, I am reliving my childhood.

I (mostly) adore everything that comes out of his mouth, I love his humor, his creativity and how he loves to sing.

When I am depressed he is the reason I get out of bed, and it makes me feel better being around him.  Even though it’s hard to accomplish things when he’s around, I miss him when he is not.  He brings joy and love into my darkness.

I have a beautiful bracelet with Tyler’s name, and a hand stamped necklace with his name, his birth stones and the moon and starts, as he was fascinated with them when he was little.  I also have a locket.

Every day when I go out, I wear one of those things, and no matter how sick I feel I think, “Do it for Tyler”.  Every day I live is for Tyler.

Inspired by the Chronic Babe Blog Carnival. They’re kicking off their Thanksgiving holiday a little early this year.

“Tell us all about the people, resources, services, sources of inspiration, etc., that you are grateful for and how they have changed your life as a ChronicBabe for the better.”

I am thankful for my husband, who also has chronic illness.  Things have been rough for us for a long time now.  We have been through things that would cause most marriages to break up. Instead it has become stronger.  He is always there for me and I for him.  I always say “We are fighting a war, but we are fighting it together.”  He is so supportive in everything I do, including blogging!  Here is an excerpt of an email he wrote me.  Subject:  I love you  “(I have just caught up) on all your posts and THEY ARE ALL GREAT, and reading them lets me get inside your life even more and see how wonderful a person you are.  I can see why you have so many followers.”

I am thankful for those friends and family who have not forgotten about me.  Who don’t ask me how I am doing because they know what the answer is already. Who don’t just tell me to “hang in there” because I’ve been hanging for almost eight years, how much more hanging can I do?  The friends who are honest with me and tell me that they don’t know what to say any more.  Those who keep calling me, keep inviting me to their events.  Even if I can’t come, maybe sometimes I can.  The friends and family who believe me that I am sick, even though I don’t look it.

All of the wonderful friends I have made on the internet.  Some are healthy, some are sick and even though we’ve never met, they are there for me when I need them. Sometimes it’s just easier to say something on line to a person than it is in real life.

I am thankful for a new friend I have met through my son’s school who has tried to help me with what ever she can do for me.  It’s not just lip service for her, she really means it.  She is the first new friend in years that I have let into my life, who I have told my secrets to, whom I trust.  She even invited us for Thanksgiving this year!

The last person I am thankful for absolutely blew me away the other day.  I know her through a chronic illness board.  She knew about My Food Stamp Nightmare and she gave me a $100.00 gift certificate to a supermarket! I couldn’t believe that someone whom I have never met before would do that for me, and I am tearing up just thinking about it right now.  She is truly an angel on earth. She has asked to remain anonymous, saying “Give God the glory, not me. He’s the one that places opportunities before me to be His hands and His heart and His feet to ‘walk the talk’.

Those are whom I am thankful for.  Those who know that I am a mother first, a wife second, and sick person third, in that order.

Sara Silverman once gave an interview where she described her childhood depression as feeling homesick while at home.  How would you describe it?

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

I have been sick with Lupus for around three years, before that, Rheumatoid Arthritis.  In March of 2008, I was laid off and because of my Lupus, have never been able to go back to work. My husband is also ill and does not work.  (What are the odds, eh?)  We are both going through the lengthy disability process. Obviously no work and seeing your savings disappear is something that would make anyone depressed.  That is referred to as Situational depression.

Clinical depression comes on so slowly you don’t even recognize it at first.  If I look at the list of clinical depression symptoms I have 13 out of 18 of them. I felt sad all the time and I cried a lot.  I couldn’t eat any more.  Doing things with Tyler was no longer fun for me.  I didn’t want to leave my home but I didn’t want to be there, either.  I felt enormous feelings of guilt over what I couldn’t give to Tyler any more because I was sick.  I felt that my life was hopeless and we would never come out of the situation we were in.

I was being treated by my primary care doctor for depression but nothing was working any more.

I credit my husband with recognizing the signs of a more serious form of depression.  He even made me an appointment with a psychiatrist who told me that I had been situationally depressed for so long my depression had now become clinical.

It is fortunate perhaps that this prompt from Mama Kat came up this week because I am in the middle of a severe depression so I can tell you how I am feeling now.

I had a very bad experience last Thursday that kicked off this depression.  I refer to experiences like that as my “hot button” issues.  I just can’t shake this depression off.  I am angry at it.  “Go away!”, I want to shout to it. I feel as if I am moving through molasses.  I am forcing myself to do everything the household needs but it feels like an enormous burden to me.  I am exhausted due to this burden.  I’ve got a child so I am careful to “put on a happy face” for him but that in itself is exhausting.

As I am writing this, tears are rolling down my face.  It is just so hard.  I don’t feel positive about anything in my life.  There is very little joy except from what my son gives to me.

I see my psychiatrist next week and we will talk it over.  The brain is so hard to figure out, I feel like a guinea pig.  What if we raise this medicine or put you on this?   It is a constant balancing act.  “This is your brain on drugs…”

Since I am depressed I know this post has come across as very negative towards seeing a psychiatrist.  Psychiatrists and psychiatric meds CAN help you.  Mine is one of the most caring in the world.

I urge you who are seeing yourself in this post to get help.  There can be joy and happiness in your life again.  I am just going through a particularly bad time.

That’s what it sure as Hell feels like anyway.  It started about six months or so when we transferred the money from his savings account to our checking account.  We needed it for bills, clothes for him, and food.  We could not pay our bills without it.

Now we just take whatever Tyler gets from his birthday, Easter or Halloween money and just throw it into our “mix”.  Part of me knows that he needs clothes, shoes or underwear whenever the seasons change so we are spending a lot of the money on him, but the other part of me feels like this is so wrong.

A couple of weeks ago we took out his 529 college fund.  Apparently if you have lost more money than you had originally put in you are entitled to take it out.

When I was growing up, any money I would get as gifts was put in my college fund.  My parents never had to “borrow” out of it.  The money was mine.

This wasn’t what was supposed to happen.  Grant and I were supposed to be working and putting investments into his 529 and our 401Ks and saving for our retirement.  We knew we would never be able to send him to college without help from student loans, but we wanted to help him as much as we could, like our parents did for us.

I don’t know if we will ever be able to pay him back.

The worst part of it all for me is that Tyler is too young to know what we are doing with his money.  We cannot ask our four-year-old’s permission.  And what would he say if we could? Would he say what we did was wrong, or agree that we did it for all of us and say he understood?   Would he be angry at us?  Would he have wished for parents who could have taken care of him better than we did?

All I know is I hate taking my beautiful son’s money and it feels like the worst crime in the world.  A crime against my child committed by the parents he loves and trusts.

“Im just a kid who’s four, each day I learn so more, I’m Caillou…”  If you haven’t seen the show Caillou, it is centered around his wonderful family and wonderful life and is based out of Cananda.

I’ve never seen Caillou’s parents punish him or raise their voices to him, because they don’t need to.  Caillou doesn’t have temper tantrums, doesn’t whine and is happy and well-adjusted all of the time.  He eats everything his mother cooks for him.

I’ve never heard Caillou tell his parents, “I don’t love you any more, get out of my house”!  He doesn’t watch t.v., he is always playing outside.  I never heard him ask his parents for anything and he always goes to bed right on time with a smile on his face.

So, naturally, when Tyler became four, I expected him to turn into a Caillou-like type of child. I don’t know what happened, but Tyler is pretty much the same kid he was when he was three.

Did I do something wrong?  Or does this just happen to Canadian kids?