Mama Sick

I read a lot about what to say and what not to say to a person who is chronically ill.  There are lists and lists of “Do’s” and “Don’ts” and honestly, it seems like a lot to remember!

So, from my experience of being sick for nearly eight years, I thought I would just talk to you about the things people say to me, why it hurts me, and offer some suggestions about what you might want to say to your friends or loved ones instead.

If you have known me well for a long time and we talk a lot, please don’t keep asking me how I am feeling.  I have been sick for almost eight years, you don’t need to ask me how I am feeling any more. I’d much prefer something like “How are things?” or even “How are you doing?” You know, kind of what you say to your healthy friends?  If there is something new, good or bad, I will bring it up to you.

Please stop telling me to “Hang in There”.  I’ve been hanging for almost eight years, how much longer do you expect me to be able to hang for?

Now here’s what you CAN say to me.  I would really appreciate your honesty.  If you are my good friend or in my family, it’s okay if you say to me, in a heartfelt way, “I just don’t know what to say to you any more about you being sick”, and do you know what I would say?  “You don’t have to say anything.  Just be my friend, keep calling me, keep inviting me to your events, even if I can’t come, maybe sometimes I can.  Just talk to me like you would any person and if I want to share something with you about my illness I will.  Just keep believing me, and be my shoulder to cry on if I need you to.”

What can you do for me?  If you live close to me you can ask me if I need anything at the store because you are going, and for me going to the store can feel like climbing a mountain.  Ask me if I need something tidied up in my house. (I can’t remember the last time I cleaned my oven or my linen closet, I can barely keep up with the laundry.)

You can offer to cook a meal for me.  It is really hard for me to do, since I cannot stand, my hands hurt and I am exhausted.  You can offer to come and play with my son while I take a nap, he’s very nice, or to have a play date over at your place, with no reciprocation expected because I would not be able to do that.

And every so often, keep asking what you can do for me.  Because sometimes I am too proud or too sad to say, “Yes, I need your help”, but one day, I may just take you up on it.

I hope this helps people who have chronically ill friends and loved ones, and maybe gives them some insight about why we might bristle a little when you cheerily tell us to “Hang in there!”

Write about what blogging means to you. Why do you blog? What purpose does it serve you and how have you benefited from sharing a piece of yourself online this way?

This was one of the ideas for MamaKat’s Writer’s Workshop and it also just happens to work out perfectly for Invisible Illness Week.

I started going online for support in earnest around Christmas of 2004 when I told my family that I was not going to be able to travel out of state to see them this year because I was just took sick.  “Um, yeah, okay, don’t you just have Arthritis?” was the reaction I was getting.  I had Rheumatoid Arthritis, the two being as alike as an anthill and a mountain.  They just didn’t understand and they didn’t believe me, and it really hurt.  I started to find places online where there were others like me, especially But You Don’t Look Sick? and it was finally a place where others understood.  I took support, and I gave it too.

In 2008 I could no longer work.  Does being sick give you creativity or does having more time on your hands free your brain to become more creative?  I don’t know the answer to that but I suddenly found myself wanting to write, and I had never written before.  Not just about being sick but about being a mom, and my life with my family.  I owe it to Jill Asher, one of the founders of the former Silicon Valley Moms Group, who gave me my chance.  I submitted some writing samples and I was accepted!

Last year, I finally had the courage and confidence to start this blog.  It’s been hard always being able to write since I am sick but I have kept on with it, trying to write about three to four posts a week.  What I get from blogging about being a mom with a chronic illness is immeasurable.  It is a way to let out my anger and frustrations for myself and to share them with others.  It is a way to reach people who are like me.  When I get comments from people telling me, “I feel the exact same way” or “You write what I cannot say, thank you!”, it sustains me and motivates me to keep my blog going.

I also write for healthy people.   To show them what it is like to be chronically ill.  Not just the pain, but the other things chronic illness takes from you; your job, your money, the things you used to love but can no longer do.  To show them the challenges I face daily raising my son, and the guilt I feel over things beyond my control.  To be a voice that speaks to healthy people and let them know that WE ARE HERE!

And mostly, to show all people, that I am more than my illness.  I am a Mother and a Wife and a Friend and a Daughter and I am living my life, maybe a bit differently than you are, but I am alive like you are.  I blog to bring the two sides together, so sick people and well people can find some common ground, and realize that we are not so different after all.

For those who don’t know me, I have been chronically ill for almost eight years now with Rheumatoid Arthritis that “morphed” into Lupus, Fibromyalgia, Chronic Fatigue, etc., etc. When I was a teenager I got my first Autoimmune disease, Ulcerative Colitis, and in my early twenties developed Costochondritis.

Having lived with so many diseases and being sick since 2003, I have had to come to terms with my health, but I still have people around me, friends and family, who have not.  They still do not get it.

I am far from alone in dealing with this as it is a frequent topic on the message boards of a website I love, But You Don’t Look Sick. And I know I definitely do not have as many problems with those around me as others do.  I read about teenagers who are sick, whose parents think they are faking, young people who are thrown out of their parents’ homes because they are “lazy”, and even older people who still feel the doubt, anger and frustration from their friends, relatives and spouses.  Sometimes chronic illness can even lead to divorce as the well spouse can no longer deal with supporting his or her sick spouse.

Why so many difficulties?  Why so much conflict? Why so many awful stories from people with chronic illnesses about the people who surround them?

After having chronic illnesses for some time, I believe I have an answer.  If one does not have a chronic illness, the concept is totally foreign.  When most people get sick usually one of two things happen; they get cured or, unfortunately, they die.  The people who have chronic illness most times do neither. They just live they whole lives…sick.  And their lives may not even be shortened by their conditions, instead living a long, drawn out life of suffering with a lot of bad days and some good ones.

People with chronic illness are the people who are caught in the middle, and I think that is a hard concept for well people to wrap their minds around.  So how do we sick people get those well people in our lives to understand what we are going through?  I think we need to understand why it is that they do not understand, and we ourselves need to understand them first.  And then explain to them what it is like for us.  Whether we use The Spoon Theory or something in our own words, we need to talk to them and they to us.  Especially as we observe National Invisible Chronic Illness Awareness Week, it is time for sick people and well people to come together, support and understand EACH OTHER.

First of all, I would like to thank everyone who was thinking good thoughts that I would be able to enjoy my son’s party.  Not just get through it in pain, but actually have fun with him.  Well, you came through! Adrenalin kicked in and I was too distracted to be aware of the pain and be too anxious.  I even got to ride the big bouncy slide with Tyler, three times!

Here is a picture of the slide with Tyler and two of his friends having a blast!

Some of the dads (Grant included) looked like they were going to have a heart attack!  We all were amazed by the non-stop energy of  our children and I felt blessed to have such a healthy child.  Here is a picture of Tyler and “Aunt” Francesca getting in some bounce fun!

A Spiderman cake was the only cake for Tyler and his best friend just had to help him blow out his candles!  I didn’t mind.

And here is a photo of the three of us that I am really pleased about.  It’s not often we get a picture of the three of us looking decent and actually having all of our eyes open!

To see the joy on my child’s face during his party and to know how special he felt…there’s just nothing like it!

And after the party I still got to take my nap too!

I read Following Polly as a member of the From Left to Write book club.  This post was inspired by this book.

When I start a book I read the acknowledgements, as many people do.  Author Karen Bergreen said she appreciated the support of her parents, Barbara and Bernard Bergreen, “who, thankfully, are nothing like Mother and Barnes.”  That right there is kind of intriguing as to what Karen might mean.

Following Polly is a mystery that starts when the main character, Alice, loses her job.  With nothing else to do she starts to follow fashionista Polly Dawson, whom she has loved to hate since college. Alice has never actually “found herself” and decides to follow Polly, having nothing better to do. Alice’s mother has always given Alice her jobs and other opportunities, even suggested therapy for her.  Alice loves her mother, but her step-father, Barnes, seems to find as many ways to keep Alice away from her mother as possible.  He seems to be very controlling and often doesn’t have Alice’s best interest at heart.

As I read this book, I kept thinking “I see my inspiration for this book…oh, it’s so wrong, but oh, it’s so true!  No, I can’t write this, but yet I must!” And here it is….my stepfather…is Barnes!  How could the author know my stepfather?

When I decided to write this must-write post, I started to compile a list of examples and had to stop because I could have written my own book on evil stepfathers.

My stepfather used to work with my father.  When they retired they remained “Christmas card friends” and called each other around the holidays.  When my father passed away, my mother continued the tradition.  “Max” had recently been widowed as well.  They talked for a few months and decided to meet for a long weekend starting Saturday.  On Monday morning I got a call at my office from my mother telling me to sit down.  I have a desk job so I was already sitting down, but I was nearly eight months pregnant…my mother and Max had gotten engaged.  I. was. speechless.  Was this my mother or a 16-year-old teenager?

Max lived near Boston and my mother lived close to me in New Jersey.  She wanted to be here for me and especially her soon to be born grandson.  She wanted to watch him grow up and wanted her husband to live here.  A few months later she broke the engagement as he was adamant about them living up north.  A few weeks later Max called begging my mother to marry him, that they would live in New Jersey, that he just wanted her.

The engagement was back on.  They married and within six months Max declared he hated New Jersey and they had to move to Massachusetts.  I was by then very ill and had a little baby to care for.  My mother could either 1. move to Massachusetts 2. spend half the time in NJ, half in MA or 3. my personal choice, divorce this creep because he was a lying bastard and he had planned this all along! Guess which one she chose?

Yep, they moved to MA to his home, which, interestingly enough, he had never sold.  Like a little girl I felt abandoned, almost orphaned, but my mother never saw through Max.

I could go on and on, but I will just mention a few more “Max stories” as my friends and I refer to him. Like the time he told me that even though I was totally disabled by Lupus at least I was “smart”?!

Like this past week, when I had to work my son’s whole birthday party around my mother. You see last week was the Jewish New Year.  If your Jewish, or maybe you know it anyway, Jewish holidays begin at sundown.  I told my mom since the holiday started Wednesday night, she could come in Friday, but she told me Max didn’t believe that, he did his dinners Thursday and Friday.  My mom would have to come Saturday (9/11) afternoon.  Every Jew I knew did not know exactly what sect of Judaism Max was celebrating.

So on Wednesday evening my mother calls me and mentions that she is having the New Year dinner soon.  I said, “You told me Max never has his dinners on the eve of holidays”?  “Yes, we are having one now…Max just wants me to be with him until the end on Friday”.  Did I mention my mother doesn’t go to temple, nor is she kosher, nor is religious at all?  Max just had to keep her one more day.

As I said I could go on…perhaps Max is even worse than Barnes.

Now here’s something interesting.  I wrote this post while my mother lay reading right next to me the. whole. time.  I even asked her about the Jewish New Year and how to spell Judaism (she didn’t know).

Pretty sneaky of me, huh?

Today you had your 4th birthday.  A few thoughts come to mind. 1. I have kept a person alive for four years! and 2. Where has the time gone?  You are still my little sweet pea, though.  You call me “Mommy”, tell me you love me and love to kiss, hug and cuddle with me while we watch t.v. together.  You are a real Renaissance kind of kid when it comes to television, liking everything from “Blue’s Clues” to “The Backyardigans” to”Batman”.

This year we explained to you that mommy has a “disease” and it is never going to go away, although sometimes it could be better and sometimes it could get worse.  We said that is why I need to take naps, use scooters and wheelchairs and why you can’t roughhouse with mommy too much because it can hurt her.  I promised that I was not going to die, even though that is a promise that I should not have made to you.

You sleep faithfully every night and nap every day at school with Eeyore.  Your favorite toys are Spiderman and Batman and their enemies, and you want to be Batman for Halloween.

You are one of the most kindest, generous and compassionate people I know.  You are very smart and I know it to be true because your teachers have taken us aside and said your mind goes places that other kids’ minds your age don’t go to.  You love to sing and act out scenes from television and movies, just like Mommy!

We have made it through potty training, though there were at times I really had my doubts! You have made it out of my room and go to sleep in your own bed, although we are still working on you making it through the night there!  I know that you are scared to be alone and I understand.

Our biggest challenges are observing your Tourette’s Syndrome wax and wane, wondering if your anxiety will get better or if you will have OCD.  I’m frustrated over why you have such a fear of water. It’s still too early to tell, but I promise you, Tyler, that as much as your daddy and I will concentrate on helping you with these things, we will concentrate just as hard on the gifts that you have been given and we will nurture them.

Every so often you say, “Why is my room so beautiful?” or “Why do you make my home so beautiful?” and I wonder when you are going to realize that we are living in an apartment that is too small for us and ask me why we can’t have a house.  I wonder when you will realize that we are desperately poor.

Sometimes I get so tired having to put on a happy face and pretend that everything is fine, even though I am not sure what is going to happen to us if our money runs out before your dad and I s’ disability comes in.  It can be so exhausting.  When I look back at the letter I wrote for your 3rd birthday, I had the exact same worries.

You deserve everything, honey.  A nice house, a backyard with a swingset, vacations.  Please know that if any child deserves these things it is you.  You are so sweet, sensitive and unspoiled.

Things are bad now, baby.  The only reason I know that God has not forgotten about me is that he has given me you, you who keep me going despite my illnesses and what they have caused. You are the greatest joy that I will ever know.

Happy Birthday to my angel and my hope.

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

Having lived in central New Jersey for over 30 years of my life, I have often thought about my dream home and even have my dream town all picked out, should I win the lottery.  The town is one of the oldest in New Jersey, Cranbury, and was first settled in the late 1600s.  It’s “main drag” is Main Street, and contains old churches, book stores, boutiques, antique shops, and very nice places to dine al fresco or inside a warm cozy inn.

Most of the houses now standing were built in the late 1800s or early 1900s and are well kept.  I have often dreamed about living in one of those homes.

So, with my lottery winnings I would like a home in Cranbury that has kept it’s old time charm but has been completely renovated as I am not one to DIY.  The rooms in the homes on Main Street are small but cozy and they have fireplaces and I would love to decorate it true to the time period.  Many have roomy porches and backyards that are just the right size, and I think my family of three would fit in very nicely there.  I long for a small town feeling, idyllic type of life that Cranbury and my home would provide while still being fairly close to New York City, Philadelphia and the beach.  Could you ask for anything more?

That is my dream home and location were I to win the lottery.  In real life, as some of you might know, my husband and I are both disabled and we are lucky to be living in the apartment that we have grown out of some time ago.

One of the dreams I had for my son was to give him a home with a backyard to put a swingset in and trees to climb on, in a town that had a real “neighborhood”.  I have suffered from chronic illness since 2003 and in 2008 had to stop working when I was diagnosed with Lupus. Of all of the things that Lupus has taken from me, it was this dream I had for my son that I cannot reconcile with or accept that this cannot be.  It has become an obsession with me, so much so that I need therapy and medication for it.  It was so bad for a while that if I even saw a cartoon of characters living in a house or playing in a backyard that I would cry.  And I know that is absolutely crazy, know it, but yet there it is.

I don’t think wanting a home for my child is too much to ask in this country that we live in.  It is the least of what my sweet little boy deserves.  And I know that one day he is going to ask me, “Mommy, why don’t we live in a house?”, and I feel as if it is all my fault, even though I know I had no control over it.  I feel that I have failed my son and fear that someday he may blame me for it.

My only hope for a home is for Grant and I s’ disability/social security to finally go through and then we will move out of this crazy expensive state that is New Jersey and rent a home. Even just renting a real home would make me so happy, even if it is a small one.  I feel so adrift here and cannot bear the uncertainty of our lives.

So, if you are someone who prays, thinks good thoughts, or wishes people good vibes, I ask you to think of me, who, while not necessarily able to have my dream home, will someday get a home that I dream of for my family.  Thank you.

Invisible Illness Week was started by Lisa Copen in 2002 as a way to help people who are affected by chronic illnesses that are not easily seen and as a way to bring greater awareness to those of us whose chronic pain and disease are not validated or respected.  Lisa suffers from Rheumatoid Arthritis and Fibromyalgia.

This is my first time blogging for Invisible Illness Week.  If you would like to get involved or just browse an informative website, just click on the link above or click on the button to in the right hand column of my blog.

The theme for this year’s Invisible Illness Week is low tech and fun:  “Each One Can Reach One”.  If you want to watch the detailed video featuring Lisa on how it works you can go here. But it is so low tech that I can also explain it to you.  This year, those who participate arm themselves with “sticky” notes with messages like “Are you in pain?  You are NOT alone”, “If you are wondering if anyone cares…someone does!” or “Got an invisible illness?  Find visible hope!” and include the www.invisibleillness.com website on the bottom of each note.  Then take your notes where sick people might be hanging out; the doctor’s office, the pharmacy, a bathroom in a professional building, stick up your note AND take a picture of it!  If you want to go higher tech, go to the site and upload your secret notes.

I did my first one today in a bathroom after I had gotten my blood drawn.  I felt like a spy trying not to get caught!  I put my note up and had to take three pictures so I get the note without the glare of the shiny bathroom door.  I wondered what people thought I was doing in the stall, texting, playing video games?

It’s fun thinking about who may find your note. Perhaps someone who can really use it or just someone who will be intrigued enough to go to the website to learn more.

Have fun!  Next week, I will be featuring some posts dealing with Invisible Illnesses in one way or another.

Yes, this is going to be another one of the hundreds of posts you will read (or skip) from mommy bloggers about their child’s first day of school.  I can’t believe that Tyler is in Pre-K! He has a new room and new teachers, plus a new cubby.  His school is doing a Nick Jr. theme and his class is The Backyardigans and he is Pablo.  We bought him a Spiderman backpack and lunchbox to get him excited for this transition.  He practiced carrying the backpack with a load of sheets, throws and spare clothes that start every week and he was practically falling over.

Looking eager to start his first day of Pre-K!

We have been told that he will have homework (?!) and that on the first day of school they are given a journal (?!) with the idea being that at the end of the year they will be able to write some words and maybe even a sentence or too.  It sounds so hard to believe!

September is such a big month for Tyler as in five days he will be turning four!  I’m excited for him to come home tonight and have him tell me about his day and discuss his daily “report”!  I am a proud mommy!

This book was given to me at no cost as a member of the From Left to Write book club.  The opinions, though, are my own.

I was a bit hesitant to read Cowboy & Wills by Monica Holloway, a memoir written from a mother’s perspective about navigating the challenges of raising a child with autism.  First, I am very sensitive about reading about children who are ill or special needs ever since I have become a mother, and secondly, because Tyler has Tourette’s Syndrome, Anxiety and a possible OCD diagnosis.

And yes, there were some uncomfortable moments in the book for me when I read about Wills’s special quirks; although Tyler has grown out of most, he still has some that make me wonder where this is all going to end up.  I could sure as heck relate to how Monica felt after she got the report on her son from the Pediatric Neuropsychologist.  How after seeing my son for an hour or so a Pediatric Neurologist made all these diagnoses about my child, the one I lived with 24/7.  I never finished reading the report. I thought Tyler could do better and so could Monica about her son, as well as and the therapist, aids and others that were committed to breaking Wills out of his autistic shell.

What really does it for Wills is when he finally gets his golden retriever puppy, whom he names Cowboy.  Through Cowboy, Wills is able to be introduced to the world as he introduces his “sister” to everyone.  He also finds a best friend to confide in.

This book did make me uncomfortable and did make me shed some tears, but I highly recommend it. Whether you are a parent with a child on the Autistic Spectrum or not, this book will resonate with you as a parent, pet lover, as a person!  It speaks about the challenges Monica faces raising Wills, while trying to overcome her own fears and anxieties.  It speaks about the complexities of marriage, made even more difficult while trying to parent a special needs child, it speaks about life and death in general.

If anything, it will bring you into a mind of any parent who has either a sick or special needs child and tell you what NOT to say to them and make you understand why they might be so sensitive to certain comments.  As a person with chronic illness, I certainly could relate to what people say to me!

Cowboy & Wills is not just a great book for the autistic parent, it is simply a great book.

Want to win this 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., EST  on Monday, September 13th.  Good luck!

If you tweet this, please let me know by commenting that you have tweeted this, thus you will have two separate entries.  I cannot be aware that you have tweeted this out UNLESS you leave me a separate comment.