Mama Sick

On Sunday she was here and on Monday she was gone.  The trouble started Sunday night. Things were hectic already.  It was after 11:00 and we still could not get Tyler to bed, the result of a too long, too late nap.  I noticed our 15-year-old cat, Spanky, just sitting in the litter box. Knowing that is not a good sign, I called Grant over to take a look, all the while trying not to upset Tyler.  He took her out of the box and she was unsteady on her feet.

We debated taking her in to the veterinary that night, but Spanky was on medication and Grant thought she might have found an old pill in a treat that she ate that night, taking a double dose of her med. That seemed likely to me because we had seen it happen once before.  We made an appointment for her for 8:30 Monday morning.

I woke up before seven and found Spanky curled up in the litter box, eyes open.  She was still warm.  I started to cry.   And I felt like here is another horrible thing to happen to us in our lives where mostly horrible things have happened to us for over three years straight.  It sounds crazy I know, but seeing her like that I felt like there was evil in my home.  Like I am living in the Amityville Horror house. What the Hell had happened to her?

I woke Grant up and he looked at me and said, “She’s dead?”  “I think so.”  Grant picked her up out of the litter box a little and let her go and she fell back down.  I was completely hysterical.

Spanky was Grant’s cat.  He brought her home from a shelter when she was about eight weeks old.  He was in shock.  I knew Tyler would be getting up soon and I didn’t want him to see her like this.  I took her out of the litter box and put her in a basket and put a towel over her.  The other cats were watching me.  I took a shower on my painful feet.  Tyler woke up and I pretended like nothing happened.  I took him to school and then I went back home.  I asked Grant if he wanted to say goodbye to her.  I heard him whispering something like “Thank you for all the years you’ve given me” and then I took her to the veterinary to have her cremated.

The vet said it was most likely that Spanky died from a stroke.  Grant feels a lot of guilt that he didn’t take her in or stay with her, that she died alone, but the vet says taking her in that night wouldn’t have made a difference and that it was good she went quickly.

That night we told Tyler that Spanky went up to Heaven.  His first words were, “So now we only have two cats?” followed by “Which one was Spanky?”, but later he was trying to look for her up in the dark sky.

Spanky was my husband’s cat.  We each brought two into our marriage and we met because of our cats.  I never got super close to her but I am grateful to her for the love and comfort she gave to my husband in the ups and downs of life.  She was our largest cat so her mere presence will be missed.  May she rest in peace and may we see her again someday.

Spanky didn't really enjoy posing for pictures!

When I saw my Rheumatologist yesterday I told him about what had happened to me in the Social Security Reconsideration process.  He was very frustrated for me and for all the hard work that I had put into the application.  I know he meant well when he starting off with “The Everything Happens For a Reason” speech.  He said think about when things will get better and what you will have learned from this.  And that the more people the system fails, the more people in this country, sick or not, will realize that this part of our healthcare system, which we all pay for out of our paychecks, is really fucked up.  And that I can be one of those people advocating for change and people can learn from me.

It seems like most doctors are only aware of you when you are right in front of them.  Patients rest in a box until you take them out again and life doesn’t happen for them and they always seem to look the same, more or less.

In the over three years since my husband and I have embarked on this great “learning experience”, we have both gotten sicker, have both become too sick to work and have watched out dreams for our family go down the drain along with most of our finances.

Most people have no idea how long it takes to get disability, about two years on average from start to finish.  In the meantime, do even doctors think about how their patients are surviving?  How about the people who are in charge of making the decision on your case?

I don’t know if all of this fits nicely into the “Everything Happens For a Reason” cliche. And I am really tired of wondering what I will get out of this “Learning Experience”, which is starting to drag on like a four year bachelor’s degree in the wrong major.

I went to the Rheumatologist today for my Orencia infusion.  I have had really achy joints for three months now and for about a month my joints have been swelling as well.  At the end of the day I can barely walk.  I have been living with ice packs for best friends on my hands and wrists, elbows, knees, and ankles and feet, and have had to increase my pain medication.  I’ve even been more tired and fatigued lately.  If you think you may have read this before, you may be right, my brain fog is increasing too.

Is it this crazy summer we’ve been having or is my disease getting out of control?.  I don’t think anyone’s having a normal summer this year. By us it’s either been a total heatwave, rain, humidity, or all of the above.  I guess depending on when this weather pattern settles down is when I will have a better idea of what is really going on with my body.

Despite my discomfort, summer is still my favorite season.  Easy light clothes for Tyler and I, flip-flops and pretty toe nails, and not having to blow dry my hair all make the livin’ easy.  I just wash my hair, put some products in it and let it go curly.  My hands and arms are not going to be happy when blow drying my hair is a must when the weather is cooler.

The next add-ons to my Orencia treatment are steroids and/or Methotrexate which are full of side effects and I don’t want to make myself any sicker in order to get better, you know?  So, until I can’t stand it any more, it will just be me, Orencia and Percocet on ice!

Because our apartment can’t hold enough people.

Because where we live, if parties aren’t at people’s large homes with Mickey Mouse and Buzz Lightyear in attendance, they are at little gyms and bouncy places.

Because my child has been looking forward to his birthday since his last birthday and a party makes him feel really special.

Because he is a compassionate, caring, loving little boy.

Because he is the only child we will ever have.

Because you only turn four once.

Because he doesn’t know that his parents are disabled.

Because he doesn’t know that we are poor, that he is a WIC child, or that we are on food stamps.

Because someday he may have to find that out if things don’t turn around for us, and I can’t bear to do that to him right now.

Because he is a child just like any other child, and rich or poor, every child deserves to be celebrated.

One week later, I finally spoke to my lawyer’s paralegal about my Reconsideration Disaster. According to her, I am where I want to be.  There is no going backwards, no matter how unfair my Reconsideration process was.  She said the hearing is where most people win, where judges tend to be more sympathetic.

Doesn’t sound too bad, right?  Except it could take up to 15 months for me to get a hearing! I’m not sure if she said if it was just New Jersey or all over the country but they are so backlogged with people waiting to have their disability cases heard that they are flying in judges from Puerto Rico to hear cases.

15 months…where will be financially?  Where will we be living?  How will I be feeling?

15 months from now Tyler will have just turned five-years-old.

I asked her what comes next and she said that they filed for a hearing on my behalf on July 7th and that they will be sending me more paperwork.

It’s another Friday with bad news, where I have to hold my grief in because my son is home for the whole weekend.

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

Katherine Rosman’s mother, Suzy, was in incredible shape for a woman of any age, let alone someone in her late fifties.  She was a dancer and a Pilates instructor, health conscious, always moving and on the go. One of the last people you’d expect to get lung cancer, and yet she does. In If You Knew Suzy, Katie goes into some length about her mother, about how close they were and her mother’s particular ways; her love of beautiful things and needing her home to be just so.

But as close as she was to her mother, she realizes that she only knew her the way a daughter knows a mother.  A reporter for the Wall Street Journal, Katie decides to go through her mother’s address books and emails in order to contact people who also knew her mother to find out how others saw her.

From her mother’s Pilates’ students to dance instructors to the people she dealt with on eBay, Katie goes on a fascinating journey to learn about Suzy:  the friend, the mentor, the teacher and the fashion maven.

Her book is a wonderful tribute to her mother and may also inspire you to do the same.  The one caution I might have about this book is that it is at times very difficult to read if you have recently lost a loved one to a prolonged illness.  I lost my father over six years ago, but the similarities of the cycle of dying at times brought me to tears.  Even still, you feel yourself nodding at Katie’s description of her mother’s cancer, and find yourself thinking Yes, I went through that agony too.

Katie Rosman happens to be a reporter with an amazing idea to memorialize her mother, but If You Knew Suzy shows us that all people in their own way make an impact on those they touch, even if not everyone knew their name.

Want to win this amazing book that was read only once by a woman who has no contagious diseases?  Leave a comment here, and give yourself another chance to win by retweeting my tweet.  A winner will be chosen at random by 11:59 p.m. on Wednesday, July 14th.  Good luck!

Yesterday I finally got together with two of my best friends and their children.  Friends who I met at work turned out to be so much more than that, and in 2006 after one of us went on maternity leave, we never were the awesome threesome at work but continued to keep in touch.  We didn’t concentrate on any bad stuff going on, especially in my life.  We were just three friends getting together with their kids on an outrageously hot summer day.

I would say it was too bad my friend on the left didn’t take her sunglasses off for the picture, but she pretty much just looks like her twin sister on the right!

Here’s all our kids.  The Oldest who is Nine belongs to Left Twin and the two on her lap belong to Right Twin, the Little boy Just turned One and the Girl turns Four next week.  And there is my skinny white kid!

Right Twin and I were pregnant together with these two, who are just nine weeks apart.   It was so special being pregnant and working together with one of my best friends.  Here, Tyler and Almost 4 show off their colored tongues.  It was Tyler’s first time eating a bomb pop! Almost 4 is older but Tyler is extra tall and she is extra small!  Almost 4 is also proudly showing off the dress she put on herself, backwards.

It was a great time that made me feel like a normal mom and I hope we can all get together more often. Left and Right twins have never made me feel different from being sick or shied away from me.  They are real friends.

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

When I first began reading the memoir If You Knew Suzy by Katherine Rosman, I didn’t know if I would be able to get through it.  The events, times, and dates were too close; I had lost my father to cancer, the author and I were close in age, and my father also never got to see his grandchild.  I had lost my father in September of 2003, but even after all these years, living it again through the eyes of Katie Rosman brought the memories back of my dad’s death.  The horror that it is to watch a parent die of cancer and the toll it takes on the child.

My father and I were very close, we saw life the same way and shared a similar sense of humor.  A “late bloomer”, my father did not marry until he was 46-years-old and had me when he was 47.  He had six brothers and sisters and he was the last sibling to have children.

My father had few close friends, unlike Suzy, as I think it is the case with most men of a certain age. His world mostly existed of his family, reading the newspaper and books about history, and watching CNN and the Yankees.

Unlike Suzy, my father seemed resigned that the prostate cancer would kill him the second time around, ten years after he had beaten it the first time, although he did try radiation and chemo. Looking back, it seemed to make his quality of life in that last year far worse than if he had chosen nothing at all.

If he was afraid to die, he never expressed that to my mother, brother or I.  You could say that might be a trait of men, not wanting to share their emotions, but my father, in particular, preferred to “suffer in silence”, whether it be a cold or cancer.

On the day of his death my husband and I had planned a regular Saturday visit.  One of the hospice nurses came to me.  “I’m glad you are here, I had left you a message.”  My father had fallen into a coma that he was not going to come out of and they predicted only a few hours left for him.  I had arrived before the rest of my family.  “What’s that machine running?” “That’s not a machine it’s the death rattle,” she replied.  “Your father’s got one foot in this life and one foot in the next.  You need to tell him that it’s okay to let go.”

And so I did.  I told him that we would all take care of each other, he didn’t have to worry any more and that he should go and see his mother and father and brother and sister again.

We were all there when my father died.  And then, after the initial shock, my mother said we needed to eat so she took us out for a late lunch.  It was one weird lunch.

At my father’s funeral, as we all put roses in his grave, one of my cousins threw in the candy Good & Plenty.  “Your dad used to bring me these all the time when he would take my sister and I out.”  And it occurred to me that my dad had lived almost a whole lifetime before I came along.  He was the fun uncle and he enjoyed going out with all his nieces and nephews.

There are so many things that I don’t know about my dad from my family and this book has inspired me to get in touch with them and ask them for a memory or story about him before I was born.  It will make a nice piece for next Father’s Day and I thank Katie for giving me the idea.

My husband opened up two very important pieces of mail on Friday while I was sleeping and just as he was about to pick Tyler up.  It was 5:30.  Bad news, and nothing I could do about it until TUESDAY!

I have been denied by Social Security during my Reconsideration process, in their invisible timeline where you work as hard as you can re-applying, copying medical records at a dollar a page, and meeting with doctors to fill out forms, with no word from Social Security on when they actually will be making a decision.   It took me over eight hours working on my application alone.

The part that was really shocking was the letter I got from my lawyer on the same day.  It was copied to me and said in part…”We have significant medical information to submit…However, we have not been advised as to the office of the Division of Disability Determination which is handling this matter and have received no bar code with which to submit these materials…”

In other words, my law firm was never informed by Social Security how to send over all of the information gathered and despite that, a decision was made to deny me!  This is so ridiculous and I am so angry that I can’t even cry about it, I have been in a state of complete shock that this has happened. And I have just been waiting out the long weekend until I can call my lawyer.

How could this have happened?  How could a decision have been made?  How could the Reconsideration process be over and can it be reopened since no new information had gotten to Social Security – because of Social Security!  Why would I take on the lengthy Reconsideration process with no NEW information?

None of this makes sense to me!  It is a complete JOKE and if I think about it too much I will go crazy. One more day until I can hopefully get in touch with my lawyer and get some answers.

Well, really advocating for yourself does.  It just happened that standing up for myself on the phone with my food stamp case worker was done in a matter of teary good points.  She reopened my case and it is truly with mixed emotions that I can say that our family has received food stamps.

My first thought when I got the letter telling us about our benefits was I can’t believe we are in this situation, that we are now this poor that we finally qualify for food stamps.  Then I was glad, of course, because this will help us a great deal, stop the bleeding so to speak.  Still, it’s never in one’s plans or dreams to be here.

I went on Tuesday to get my card and choose my pin number.  As with any well run state agency in New Jersey, all of the Food Stamp people pick up and go to lunch at the same time. I sat there for over an hour, just waiting, with too much time to think.

I tried to breathe through my mouth by the man who gave off a stench of urine every time he got up or sat down.  I looked around at women who had a child and an infant, or who had a child and another one on the way.  I got involved in the soap opera of the 20-ish or so girl who was trying to sort out the babydaddies of her children and who should pay for what.  I felt so bad for these beautiful children being born into this life and wondered why men and women thought it was a good idea to let it keep happening.

I got really angry because I wasn’t supposed to be here!  This was not the plan for a woman who had been working since she was thirteen, who was driven and who along with her husband was supposed to be living in a house with two children and doing the dual-income family thing.  Who was supposed to be working hard to give her children everything she had growing up and more.

For the first time in a long time I really got upset and angry at the diseases that had brought me to the Middlesex County Board of Social Services, waiting for my food stamps so my husband, son and I could eat. This wasn’t supposed to be me, us, our family!  I was starting to tear up and I figured if anyone asked if I was okay I could always say that I was reading a very sad book, which I was.  But no one asked me.

I went home feeling really down and wondering when I will get my disability and the kind of life my family and I will lead for the rest of our lives, just because I got sick.