A Child’s Goodness to Our Family

About a month ago I met with a friend whom I hadn’t seen since college.  We had kept in touch over the years and he works very close to where I live so we went out to lunch.  It was like 20 years had not passed as we fell right into step with each other.  We talked about our children, his 12 year old daughter and his five year old son, who is the same age as Tyler. We talked more about the battle my family has been fighting, Grant and I s’ illnesses, my disability fight, and all of the money problems and worries associated with our situation.  We had a nice time despite the serious talk and I hope it won’t be another 20 years before we see each other again!

On Monday we got what appeared to be a Christmas card from the Holy Trinity Interparochial School in Westfield, NJ.  Puzzled, I opened the card and found $275 worth of gift cards from Target!

It said that my friend’s daughter was one of their students and had given us our name!!

“The children of Holy Trinity want to brighten your Christmas this year.  Please accept our gift…to purchase something useable for you.  Peace, God Bless you, Sister Maureen Fichner.”

I emailed my friend my stunned thanks for giving them our name and he told me that it was his daughter, “Samantha’s”, idea.  They had prayed for our family at home and Samantha was so touched by our family’s struggles that the next day at school she told her teacher and principal that she was starting a fund for us and asked for their help.

Thank you so much, Samantha.  If you are capable of spearheading something like this at twelve, I can only imagine what you will be able to accomplish when you are a grown-up! And for the children and adults connected to the Holy Trinity Interparochial School in Westfield who donated to help us out, you have my heartfelt thanks.   To give to a family whom you have only heard of is amazing.  How nice to know that someone cares about us! All of you represent the true meaning of the season!

May God bless you all and Merry Christmas!

Love, Emily, Tyler and Grant

 

 

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O Christmas Tree: A Family Affair

This year between my physical and mental health I could not be the driving force behind getting the tree, putting up the lights, decorating it, etc.  It is probably the latest I have ever done it, but the Christmas tree is up, done!  And my shaggy dog of a child has a haircut!

Instead of coming for Christmas this year, my mother came early because of the overlap of Christmas and Hanukkah. (Long story for another post) It worked out because I really needed help getting things together and keeping things together.  On Saturday by the time we got Tyler’s haircut (always stressful for him and then for me), me having to lift him onto the barber chair, struggling with the cold and winter clothes with the car seat, and then went to lunch, my body aches and exhaustion were telling me I was done for the day.  I am really a one event a day person, if that.

I was very upset, but Grant told me he and Tyler would get the tree, that I shouldn’t worry.  It was a father and son outing and the two were like superheroes, back in a flash with the tree. Tyler had picked it, Grant said.  It was very different from the trees that we usually have, tall and not as full, but beautiful.  It turned out to be the perfect tree because it was easy for me to put up the lights, since it didn’t require as many as a fuller tree would.

Tyler decorates the Christmas tree. Yeah, he's got no pants on. That's how the men in my home roll.

 

Mom decorating the tree, singing Christmas carols. It doesn't get much cheesier, does it?

 

I was too exhausted to decorate the tree this year, but it didn’t matter, the tree was up, for my son.

My contribution, putting up the angel. Tyler was too scared to be lifted up to do it!

 

The finished product.

 

For a close-up of some of my favorite ornaments, check out this post.

So, one big Christmas stress is over and done with!  The next one?  Hoping Tyler’s presents that we have ordered online show up in time!  Will Tyler need an I.O.U. from Santa??

 

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The Appeal

I had news about my appeal the day after I was denied disability, but it has been difficult for me to write anything about this process, good or bad.  This rejection has really taken it’s toll on me and I’ve had to question how I need to move forward with my life.  I realize that it’s going to take me longer to obtain my goals and in fact I might have to give up some of my dreams, the main one being able to move to a bigger place to live, the dream of giving my son a backyard.  Throw this into the holiday stress one experiences, moreso when one is disabled, and I am a mix of depression and anxiety, almost always completely miserable.  I am praying and hoping for some peace and to be able to give my child the Christmas he deserves.

I am even having trouble blogging, so please excuse me if I am not writing as well as usual.

When I called the lawyer’s office a week ago the administrative assistant said they too had just gotten a decision.  Typically the lawyer reviews the decision and gives the person his recommendation as to what he believes is the next course of action.  She told me to wait a week to ten days to hear something from him.

He called me the next day.

He had said he wanted to call me yesterday but that he felt it was too late.  He laid in bed that night, replaying it all in his head.  I said, “Thank you for caring” and he said, “I’m not just saying this to be a nice guy to you.”  I told him I wish I had had more time at my trial and he said, “You could have had another hour with this judge, her mind was made up about you.”

He told me he was going to start working on an appeal that day.  That’s where he takes apart her reasoning as to how she came up with the decision, and identifies the legal mistakes made.  He felt he had plenty to work with.  For myself, I could not bear to read what she said.  It was pages and pages long and just too painful.

Once the appeal is done, a different judge reviews it but Social Security has five to six months to make a decision!   More waiting, more worrying in the battle of my life.

I feel good in that the lawyer was really shocked and he seemed fired up to help me.  He’s got a stake in this too of course, but he really seems to believe in my case.

In Grant and I s’ heart, we really expected a favorable outcome and readjusting to this unfavorable decision has been extremely difficult for the two of us.  I started this process officially in October, 2009 if you are counting.

It makes me angry about my illnesses all over again.  I think about the way I used to be, before I got really sick.  A busy working mom bringing in good pay, taking care of my family. And the way I am now, struggling every day, with no control over my destiny, just waiting for a stranger to recognize that I truly am ill.  Literally my life once again hangs in the balance of one person and I can only hope that this time this person makes what in my heart I know is the right decision.

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Tuesdays With Tyler: Another Meeting With the School

In follow-up to our October meeting with the school, Grant and I again met with the child study team last week.  We have agreed to have Tyler evaluated.  This would include being evaluated for “academics”, speech, occupational, social and psychological. I thought Tyler was doing better in school as we have had no calls from the teacher but the teacher says Tyler remains very disruptive.  It’s not anything she hasn’t been able to handle but right now she has a student teacher helping her and soon she will not.  Tyler seems to require more attention, more time to calm down and sit still then the other children.  She said that Tyler can barely write his name and is way behind the other kids.

I brought up a concern about some muscular weakness.  When Tyler uses a stylus at home he can write on his little computer and if he uses chalk he can write on the sidewalk.  He has always had difficulty riding a bike and he struggles to button or snap his jeans.  They told us he will be evaluated for this, to see if it is a matter of that he just won’t do it or that he can’t, and whether it actually is a muscular issue.

All of the women there truly seemed to want to help Tyler.  The principal even sat in on our meeting.  Things sure have changed since I went to school, when the principal was a man to fear and you never heard from him unless you were in serious trouble.  She told us that she has met Tyler and that she knew he was a good kid, that he had touched her heart.  She also said that a lot of kids have trouble transitioning into kindergarten.

All of the people that knew Tyler had wonderful things to say about him, his amazing memory, how well he told a story.

On another front, we decided to let the psychologist go.  She had drawn up this behavior chart for Tyler that was broken down to before school and then after that every hour when he came home.  Basically, every hour he would either get a star or not, depending on whether he was good.  Grant and I felt that seemed like overkill; every hour we would be discussing with Tyler whether or not he was good or bad?

We told the child study team why we decided against this psychologist and they all thought the behavior plan was too much.  We aren’t going to rule out therapy in the future, but we didn’t click with this therapist.  Also, thankfully, some of the issues that brought us to see the psychologist in the first place have improved.  Tyler has only hit me twice, does not use bad language (we all “swore” it off) and is speaking to us less violently.  I pray that this was a stage and that he is learning to get a hold of his anger and use better words to express it.

So, Grant and I signed on the dotted line last week to agree to the evaluation, which won’t start until after the new year.  I can only hope that the child study team is as genuine as they seem to be and has Tyler’s best interests at heart.

 

 

 

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Disability: Denied

After waiting nearly five months for a decision on my disability trial, in yesterday’s mail I received an “unfavorable” decision.  I don’t know how well I will write about this because in my heart I felt that I would get my disability and that the reason it was taking so long was that they were just trying to figure out how they would award me.  My lawyer’s office had said they were expecting a fully favorable outcome and when last we talked my lawyer said that the evidence presented by my treating doctors was one of the strongest he has ever seen.  I called the office immediately yesterday and they told me that they had also received the decision, that my lawyer would probably start reviewing the case today and get back to me within a week to ten days about what his recommendation would be.  I have sixty days to notify them if I will appeal the decision.  Until I speak to him I am not quite sure what will happen next.

The decision was more than 10 pages long and I have not even looked at it and don’t know if I even can.  When I saw the lies the Social Security doctors had written about me and the true results of my case not put in the exam, it nearly brought me over the edge.  I really thought the rebuttal letters from my lawyer and I would shake things up a bit, but were they even read by my judge? These doctors committed medical malpractice, they lied and they did not put in pertinent information that would have been favorable to my case…what recourse do I have towards them?  Who pays for this besides myself and my family?

I know that when I originally had my disability trial on July 19th, I did not blog about it because I felt it was too traumatizing to relive it on paper but now I feel compelled to write about it, at least the major highlights.  I truly felt I did not have “my day in court”, the judge kept looking at the clock.  I had over a dozen diagnoses, took many medications but she only asked me three questions.

1) “What do you take for your Lupus?”

“I take Orencia.”

“What is that?”

What is that?  What is that? You, the person in charge of my future, you, who hears testimony from sick people every day…has never heard of Orencia??  Do you watch television?

When we got into the courtroom, I put my feet up, as I cannot for any length of time sit with my feet down due to the swelling.  But the room was too small so I put my feet up to my chest.

2) “How come you can put your feet to your chest?”

“It is easy for me because I am hypermobile.”

“What is that?”

I would think that any idiot would be able to figure out what “hyper” and “mobile” might be.  Need I write any more about this one?

3) You take Pristiq for your depression.  What side effects do you experience on this?

“Not too many, except for the sexual side effects.”

3a) How much sex are you having?

I was in shock, what in God’s name does that have to do with whether or not I am capable of doing a job?  I looked at my lawyer and he said I had to answer the question.  I answered it, I will leave the how much or how little to your imagination but it was embarrassing and degrading.

Most of the time was spent with the judge offering up jobs that she thought I could do and my lawyer knocking down each one, I did feel he was a very good lawyer.

I think my whole trial was about 30-35 minutes long.  When she was wrapping things up I got up and told her I had a few statements of my own to make, which she allowed.

I said, “I can’t believe you are trying to figure out what jobs I can do.  I am bedridden on most days!  Every single second of my life is miserable and were it not for my child I would not BE HERE!”

I was angry and crying.  She said, “Well, I hope you feel better” and I said, “With all due respect, your honor I will NEVER feel better!”

I feel like I couldn’t have gotten a worse judge.  My lawyer said she was one of the worst he has ever experienced but not the very worst.  When I went for my court ordered doctors’ exams, people asked me what judge I had and when I told them her name one man groaned and shook his head.  Apparently she had somewhat of a reputation.

Back to the here and now.  I have heard of people needing to go to court two or three times for their disability but I never thought I would be one of them.  My Rheumatologist told me in her experience they always denied the sickest people.

As I break the news to my family and friends, I know that some will question if I am really deserving of my disability, and that maybe some of you will too.  The only thing I can say is that being this sick, and not being able to work because of it has put my family into poverty.  I will never be able to help my child go to college or maybe ever take him on a vacation.  I don’t see how they could think anyone with a family would deliberately not work if there was any way that they could.  I did work disabled for five years and I just couldn’t do it any more and I wish to God that I could.  This was not the track I was on, my future looked very bright.

Going through this process, now over two years, has been the hardest thing I have ever done, physically and mentally and if I didn’t need the money, if Grant were not also disabled I wouldn’t do it, it’s just too hard to beat this literally criminal process.  But I don’t have any choice but to continue on with this fight.

 

 

 

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My Favorite Christmas Ornaments

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 1)  Have you decorated your Christmas tree?  Share a favorite Christmas ornament.

I always feel a week behind during Christmastime!  My mother is coming in next week and we plan to get our Christmas tree next weekend, so no, no tree up yet.  As for the ornaments, they are all ready to go.  Some of you may know from last year that we decorate our tree with all cat related ornaments.  I’m not sure when I started doing that or why, it just happened that way.  And since our cats are the way we met, it just seemed the right thing to do!

I have so many “favorite” ornaments, I couldn’t share just one!

We got this very fashionable kitty in Las Vegas on our honeymoon in November of 2002, along with another similar themed kitty ornament.  I remember the two were over $30 each, buy hey, we were on our honeymoon, and I was gambling and winning!

For my 35th birthday, Grant surprised me with a Christmas trip to the beautiful seaside town of Cape May, NJ. We stayed in a cozy bed and breakfast and of course couldn’t help but buy a couple of cat-related goodies for our tree!  We bought these two kitties on their sled at a shop that specialized in dog and cat gifts.

This ornament is new this year.  Who doesn’t love Hello Kitty?  The reason I chose it as one of my favorites is because this year Grant got his disability.  We overcame a big hurdle in our lives and have a little bit of money so that I could finally afford to buy something new for our tree.  Literally I had not bought any ornaments in a few years so this represents a hopeful start for us.

Whatever you are doing this holiday season, I hope you are filling it with old memories and memories to come!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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For Women With Curves: Win Some Fashion For the Holidays!

This is the third time I am pleased to be working with the fine women from Fashion to Figure, a site that carries very trendy and fashionable clothes for the plus size woman at great prices!

Wouldn’t it be nice to have something new to wear to jazz up your holidays?  Fashion to Figure will give one lucky winner the chance to choose anything she wants for up to $30.00.

And here are some of the things the winner could choose:

 

 

This dress and these tops are all either $30 and under!  Fashion to Figure has great clothes at great prices, with sizes from 12-26!

There are three ways to enter:

1. leave a comment

2. tweet this contest out

3. link it on your Face Book page

Each entry counts as ONE so if you do all three, please comment THREE times.

The contest will run until 11:59 p.m. EST, Wednesday, December 14th!  Good luck!

Congratulations going out to Stacey Gamberg, winner of my contest for up to $30 worth of holiday fashion!  Stacey’s entry, #4 was selected by random.org.

Even if you didn’t win, make sure you take a look at Fashion to Figure’s  amazing website and take advantage of their holiday sales.  Treat yourself, you deserve it! Thank you to all who entered!

 

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Tuesdays With Tyler…And Santa!

Despite my worries about how I would be able to handle the normal rites of Christmas while being sick and in the middle of a bankruptcy, our trip to see Santa was a success!  I even got a handicapped parking spot at the mall!

Practicing his smile for Santa as we waited on line.

 

As we waited in Santa’s Enchanted Forest on line, Tyler had all kinds of emotions running through him.  First he wasn’t sure he wanted to sit on Santa’s lap, then as we got closer he got very concerned about his appearance. “Do I look clean?” “Does my mouth look clean?” “Am I drooling?”

Drooling?!

The mall we went to had a great Santa.  I gave his assistant Tyler’s name and when it was his turn Santa said, “No, this can’t be Tyler, he got so big in just one year!”

I heard a little of what they were saying and it made me kind of sad.  Tyler told Santa that he wanted another Leapster Explorer, that his had broken because he had thrown it on the floor so many times.  “I got angry”, he said.  I heard Santa say that getting angry once in a while is okay but that he has to be careful when he gets his new computer.  I think this Santa is better than the therapist I am taking Tyler to! Hmmm.

After taking the picture and getting off Santa’s lap, Tyler told me he only could remember one thing he wanted and I told him that was okay, Santa knows what else he wants.

When we came out of Santa’s Enchanted Forest I took this picture.  Tyler just seemed so happy that I even decided to make it our Christmas card this year.  I entitled it “Have a Holly, Jolly Holiday!”

And I sincerely hope you do.

Love,

Emily

 

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Chronically Stressed During the Holidays

Every December for me is always the same.  What should be the season to be jolly is looked upon as a season of dread, depression and the feeling that I am not living up to what is expected of me as a wife, mother and friend.

Is it just my imagination or am I sicker than I was last year?  No, I know it is true.  After my third visit to the endocrinologist last week, I was basically given the “all clear” from her.  This time my cortisol level was normal. Although she felt the first low result was a fluke, I did convince her to run another test on it which I plan on getting this week.  She said for my cortisol to be that low I would be in a hospital right now, but that is kind of like how I feel. Twice as tired, twice as nauseous, and increased confusion since the summer, along with weight gain. She advised me to see my gastroenterologist next as some of my symptoms may be an indication of having a long term bacterial infection in my G.I. tract.

My PCP ran out of samples of an antidepressant I was on and due to the cost of it I decided I would see if I could taper off of it.  (I am on another one besides this one)  I don’t know if it’s the holidays or that I am no longer taking the drug but I grow more anxious and depressed by the day.  Between my physical and mental symptoms it is getting harder to get out of bed each day.

Yeah, definitely sicker than last year.

Besides being sicker and December 3rd upon us, my husband and I are in the middle of filing for bankruptcy. When we met the low-income lawyer last month I was so relieved because I thought we were done.  We had gotten together so much paperwork.  After meeting with her, we received via email another stack of forms to be filled.  Besides me being sick, Grant has had a cold/lung infection that combined with his asthma has made him sick for weeks, he just can’t get rid of this thing.  The two of us are definitely moving slower than usual and the November deadline for our planned bankruptcy filing had to be changed to a December one.

And now into this whole mess, here comes Christmas a-ablazing, with the days passing whether we are ready or not.  I still have most of my Halloween decorations up, although I did manage to put our Thanksgiving Day turkey nutcracker decoration away to make room for the Advent calendar.  Our living room is so cluttered I don’t even know how we will fit a tree in there.

Today I am planning on taking Tyler to see Santa.  A haircut will have to wait as I don’t think I am able to do both in one day.  And then tomorrow, if we have the strength, Grant and I will try to put out our decorations.

And Christmas cards???  Well, if you were expecting one from me this year, you probably ain’t getting one.  If it wasn’t for the internet, I don’t even think my child would get a visit from Santa.  Luckily Tyler is still too young to care if the gifts are wrapped or not.

I know I am not the only one who is sick and feeling this way and that is why I am writing this as well.  I know a lot of you have it even worse than me, I read about all of my sick friends, one who is even homeless for Christmas and then I feel guilty that I am not feeling more grateful for what I have.  Even though Christmas may be one hot mess at least I have a roof over my head to have it.  Logically I know that many more are suffering than me but mentally I am too wrapped up with my own problems to see that.

No matter what I tell myself every year, no matter what my therapist says; that Christmas is going to come and go no matter what I do or don’t get done, I still feel this way every single year.

And didn’t I write a post just like this the year before?  Yes, yes I did.

Wishing all of my chronically ill friends the happiest holiday season they can possibly have plus a Christmas miracle or two thrown into the mix.  We’re going to need them.

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The Advent Calendar That Will Probably Doom Me to Hell

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 3.  The first day of December is upon us!  Describe an Advent calendar or a special way you count down days until Christmas (past or present).  Inspired by (Classy Chaos)

For years, long before Tyler was born, I had a cute wooden fireplace with numbers that as each day you pulled one out, Santa would move closer to the chimney until on that last day before Christmas little Santa was in your fireplace.  But that’s 24 numbers to take care of and it was a Christmas miracle in itself that we held onto all those numbers as long we did, especially with both cats and a child to occasionally knock the fireplace over and to play around with those numbers.

This year I was determined to buy an Advent calendar a little closer to the true meaning of the season and then I saw this:

 

The Fisher-Price Imaginext Advent Calendar in which, according to Fisher-Price:  “Combines the excitement of Imaginext and the holidays with a fully assembled Advent calendar!”

I knew that Tyler would love it but I hesitated.  It was about as far away from the true meaning of the season as you could get.  I waited on it.

Already a typical man at five, Tyler likes to look at a magazine or catalog when he “does his business” in the bathroom.  One day he asked for a magazine and I handed him the Fisher-Price Holiday Catalog.  After spending a fair amount of time in the bathroom, Tyler came out and said, “Mommy, I want this for Christmas”, pointing to the Imaginext Advent Calendar.

My mind was made up.  I can’t wait until he comes home from school tonight and we show it to him.

Yes, I will have made my little boy very happy.  But I probably haven’t exactly scored many points with God and Jesus.

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