Mama Sick

Due to exhaustion, pain and the fact that people with Lupus shouldn’t be out in the sun too much, I haven’t been to the beach in about two years.  I’m not feeling any better, in fact, I’ve been doing a bit worse lately. But tomorrow, my mother, son and I are packing up and driving the hour or so excursion to the Jersey Shore.  We are going to Ocean Grove, which is a lovely town and has a nice family beach.

Why am I doing this when I feel so sick?  Because I want my child to experience building sand castles, walking along the shore, and dipping his toes in the ocean.  Because I want my child to be able to take advantage of being near the Atlantic Ocean and because I don’t know where we will be next summer. Because I want him to have the same happy memories of the beach that I had when I was a child.

So tomorrow we are going to get up when Tyler gets up and just get ready and then get on the road and I am scared to death.  I wake up swollen and hurting and exhausted.  I won’t be going back to bed, letting my pain medicine work like I usually do, I won’t be trying to get any more sleep, despite the pain, migraines and intrusive thoughts that invade my nights.

My mom is going to help me but I worry about parking, despite having a handicapped placard.  I worry about carrying things, walking to where we will camp out on the beach and having enough energy to play with my son.  I worry about how I will be able to drive back.  I worry about how I will feel on Sunday, and maybe even Monday and beyond.

If you are reading this and happen to be healthy you might be wondering why the Hell I am bothering and that I should let my “mom guilt” go, and that my child would grow up perfectly fine if he never even saw the beach in his young life.  If you are reading this and happen to be a sick mom, you might see my logic and know that sometimes you’ve got to put aside your own pain and fatigue for your child and do something extraodinary and seemingly impossible for the sake of the both of you.

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

When I first saw the plot summary for The Stuff That Never Happened by debut author Maddie Dawson, part of me thought “Oh Lord, please don’t let this book be another The Bridges of Madison County, the 1992 mega-best selling novel which when I finally got around to this “must read” was one of the worst, cheesiest books I have ever read.  (Am I dating myself?)

I am happy to say that this book couldn’t be further from Bridges. The premise is somewhat similar.  In The Stuff, Annabelle McKay marries way too young and way too quickly to a man she moves from California to New York City with.  Living with her husband’s best friend and mentor, Jeremiah, and his wife and twin toddlers, the two wind up having an affair. Annabelle and her lover vow to leave their respective spouses only for Jeremiah to tell Annabelle that he is unable to go through with it… after she has already left Grant.

Grant winds up taking her back on the condition that she must never speak of what happened again. With this promise made to her husband, Annabelle spends the next over 25 years of her marriage thinking and fantasizing about Jeremiah on a daily basis.

By the way, I’m not spoiling the book for you as this is all information that can be found on the back cover of the book.  The real “meat” of the story is that Annabelle winds up meeting Jeremiah 26 years later while visiting her daughter back in New York City, and what Annabelle decides to do after that meeting occurs.

Pretty juicy, right?  Who among us hasn’t had an old flame that we think about from time to time wondering, “What if?”  or “What might have been?”

But even if you do not have an old boyfriend lurking in the dark corners of your brain, there is so much more to this book.  It is a book about feminism in the mid 1970s, being a wife, mother and daughter, choosing a career, and trying to find your identity in the midst of trying to juggle all of those things.

The Stuff That Never Happened is not just a “What if?” book.  It is about the choices we do make in life; the consequences and how we deal with them.

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 Wednesday, August 18th.  Good luck!

If you tweet this, please let me know by commenting that you have tweeted this, thus you will have two separate entries.

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.

The Stuff That Never Happened by Maddie Dawson is a book with a “What If?” type of plot. Annabelle McKay marries young and quickly, and finds herself having an affair with her husband’s mentor and best friend.  Ultimately Annabelle and Jeremiah do not leave their spouses but Annabelle spends the next quarter century of her marriage to Grant thinking and fantasizing about Jeremiah on a daily basis.

I think we all play the “What If?” game, particularly when we are experiencing down or difficult times in our lives.  What if I had married my long time boyfriend or “Man X”? What if I had never left my first career path?  What if I had decided to major in Education in college instead of Communications?

For me, though, playing the “What If?” game doesn’t really work because when you live a life with chronic illnesses and pain, you sort of have the answer to a lot of your questions.  It doesn’t matter who I married, what I chose for my profession or what I chose to major in, because in the end, I still would have wound up being sick.

What if I had not gotten sick? Well, some of the answers are easy.  I would be most likely earning a six figure salary, I probably would have had more children, I would be living in a house instead of an apartment which we have outgrown.  If I play the “What If?” game, I could honestly go crazy so I stopped playing it a long time ago.

Dr. Elisabeth Kubler-Ross defines the five stages of accepting a chronic illness as:  1. Denial 2. Anger 3. Depression 4. Bargaining (“If I give more to charity my diseases will go away”) and 5. Acceptance.

I’ve been going back and forth between Stages 2 and 3 for a long time now, but that’s what medication and therapy is for!  I guess, subconsciously, I really am still playing the “What If?” game.

In life we make choices.  You change them if you are really unhappy, or, if you feel committed to them, you do what you can to make them better.  Or if you are stuck in a situation not of your choosing, you play the hand you’ve been dealt and try to live your life as best as you can. I will still continue to strive for Acceptance.

I’ve been blogging since June of 2008, first with the Silicon Valley Moms Group.  When BlogHer ’08 came around I was barely familiar with what it was.

I started this blog in May in 2009, and really wished I could go to the July ’09 annual BlogHer conference in Chicago.  But I couldn’t because I was too sick.

Now the annual conference is here once again, in New York City of all places, and this Jersey girl still can’t go.  I wouldn’t have even needed money for airplane flight this time around.

My wonderful husband gamely volunteered to take me to the conference, saying that he would wheel me around to whatever panels and discussions there were, to whomever speakers I wanted to see.  But it’s not just the lack of mobility that made me tell him thanks so much but no thanks.  It’s the pain, the tiredness, and the complete lack of energy that I have.  Even with sitting in a wheelchair all day I would still be exhausted.  Getting dressed professionally or even decently and putting on make-up and doing my hair are beyond my capabilities.  I can’t make it through the day without a nap.  I can’t function before 9:30 a.m. and even that’s a stretch.

Besides all of that, even though Grant wanted me to spend the money on the conference, we plainly just don’t have it. When you haven’t worked in over two years and have spent almost a year in the disability process already, you go through any money you have saved, fast.

I’m not writing this for you to say “Oh, poor, Emily”, or maybe you are saying “She’s writing like she is the only one who is too sick to go to BlogHer”!  I’m writing this for people like Christine Miserandino, otherwise known as “The Spoon Lady”.

For those of you who don’t know her, Christine’s blog, But You Don’t Look Sick, and her message boards are literally a lifeline for those who are chronically ill, diagnosed or undiagnosed, and whom just like her blog says, don’t look sick.  The people who experience the dirty looks when they use the handicapped parking spaces or the skepticism and/or denial from their family and friends. She has been blogging on BYDLS for seven years and is an inspiration to me and to thousands of others.

Christine has Lupus too and is also too sick and too poor to go to BlogHer.  She lives on Long Island, NY and wouldn’t have needed the plane fare either.  Last year, when we heard that BlogHer would be in New York in 2010 she said, “We’ll go together!”, and yet here we are.

Unlike me, which is the thing that really breaks my heart for Christine, she was a finalist in the 2010 BlogHer Voices of the year.

Recently I have made a new friend, Selena, of Oh My Aches and Pains! thanks to Twitter and to But You Don’t Look Sick.  Selena is a cancer survivor, has dysautonomia, fibromyalgia and chronic fatigue, among other goodies.  She has been chronically ill for over 20 years and she too is home this weekend.

I’m not going to speak for Christine, Selena or for anyone else like us, but after having serious and worsening illnesses since I was a teenager, I’m wondering if I will ever be able to go to BlogHer.  I’m wondering if I will ever be able to network and meet with the friends I have made through blogging, or if I will ever have the opportunity to take my blog to greater heights through conferences like BlogHer.

While looking at Selena’s blog I ran across an anonymous quote:  “Inside every sick person is a well person wondering what the Hell happened”.  And I ask all of you who are at the conference this weekend to count your blessings that you are able to be there, and to think about all of those who cannot.

Tyler and I went to a blueberry festival at a Protestant Church a few weekends ago.  It’s funny, you parents drag you to these things that you complain about as tweens and teens as really cheesy and then you bring your kids to the same things!  We didn’t know a soul but the people there were welcoming and friendly.

Tyler immediately went for the cupcake with blue frosting while I went for the more traditional blueberry short cake. We drank lemonade and then I convinced him to try something with actual blueberries in it, blueberry pie!

They had a band and Tyler immediately began dancing.  He loves to dance.  I tried to get him to dance with a little girl there but they were too shy.  I was his dancing partner for a while.

Looking more like a concertgoer at Woodstock, Tyler gets into the peace and love by listening to Christian folk music!

I love summer nights like this.  Whenever we go to something like this, Tyler always asks, “Can we come here again next week?” and I have to explain to him that these fairs and festivals happen only once a year. Fortunately our wonderful times together are a lot more often than that!

Sometimes it frustrates me that people who have the same diseases I have are doing better than me. I’m not jealous of them, I don’t want anyone to be sick.  It just gets to me that some people can have serious diseases and are able to function so well.  For example, I know a friend of a friend, who was sick for a while; joint pain, feeling like crap, etc.  In fact she goes to the same Rheumatology group that I do.  She was diagnosed with Lupus like me, put on Plaquenil, and then just resumed her life.  She is fine!  She is working!  She owns a condominium!

Why, when I got Lupus, did it disable me to the point where I could not work any more and my life is such a mess because of it?  Why have I never gotten better?

Then there are those people who have more serious conditions than I, have more diseases than me and they still are doing okay in this world!  They are working!  They are working out!

Sometimes when I am getting my monthly I.V. of Orencia, I sit next to people who are getting Orencia or Remicade and they talk about their work, one of whom is a police officer.  One time I was sitting next to a woman who had to be around 80 and she was telling me how she lives alone and has her routines and goes about doing this and that.  And I wanted to say How, how are you able to do this? You are eighty-freaking-years-old and I am forty!  Why can’t I just get my monthly infusion and go on with my life?

My questions and rants are mainly rhetorical.  I was diagnosed with Ulcerative Colitis when I was 16 and with Costochondritis in my early 20s.  Rheumatoid Arthritis came in 2003 with Fibromyalgia to follow a couple of years later.  I worked with my RA for five years and it wasn’t easy.   For the first year and a half of my RA, my feet were so swollen I had to ice them about five times a day.  I brought my ice packs to work, I brought my ice packs on business trips.  I sometimes took up to eight Percocets a day to get me through work.  I sometimes would throw up in the morning and then just go to work.

So, I guess you can’t say I haven’t given it the old college try.  When Lupus came, I just never seemed to recover and other conditions followed.  I know I am sick, know I can’t work, know I can’t do normal mommy things…I just wonder how they can.

But  I’d be lying to you if I told you that I am 100% positive about all of this.

There is a tiny part of me that sometimes thinks maybe I’m lazier than these other people, maybe they just WANT IT more than I do, or maybe I’m just simply crazy.

Confession:  I do know that I used to be one of those other people who had diseases and were working and having babies and going out to dinner and I used to look at people like me now and thought, “I just WANT IT more than they do!  I am triumphing over my illnesses!  They have given up!”

And now, the only thing I do know is that for some reason, I no longer…can’t.

This month was our first full month using the Food Stamp program.  Applying for Food Stamps was very stressful for me because we were on the poverty borderline, so I really wasn’t sure if we would get them.  They only take in to account your income, rent and childcare. Credit card debt (which unfortunately we need to use to survive) and out of pocket medical expenses (of which we spent over $18,000.00 on in 2009) are not taken into account.  So although you may be desperately poor, you may not qualify.

But we did and I am thankful and feel lucky.  It is such a relief to be able to buy my son healthy snacks and fruits, have the money to make healthy meals, and not have that sick feeling in the pit of my stomach that I cannot afford any of it.

But I think about those other families who may not be so lucky, who may be making just a bit too much more, even a dollar more, and are not able to qualify for the food stamp program. Are those families doing any better off than mine?

Can families like this get help?  Sure, but there is no freedom to eat what you want and to feed your children healthy foods like with the food stamp program.  The food banks contain lots of pasta, cereals, starches, sugars and canned goods.  There is not too many healthy options. Programs that allow you to buy food at approximately 50% off…well, you get what you pay for. The meats are high in fat, and again, lots of unhealthy foods from brands you’ve never heard of. WIC is a good program but can only provide you with milk, orange juice, and brands that a lot of stores don’t carry.  And trust me, I’ve tried all of these options before saying I’d rather go into further debt than use these programs.

Were I to hit the lottery (yeah, good luck, right?) I would love to set up a fund for families on the fringe. Those who just don’t quite meet the poverty level yet have high expenses, especially for families like me who have gotten into this situation just because they are sick.

The New York Post today in an article written by Carrie Seim. The article is about banning gifts for kids’ birthday parties.  I’m quoted at the end.  It is on-line and in the newspaper.

Here is the original post that I had written on the subject:

No Gifts For Kids’ Birthday Parties?

Anyway, I’m really excited because it’s my first time that my little blog and I have been mentioned!  I hope you will give it a look!

Last year I went to the dentist and wound up racking up a $3,000. dental bill, of which I have only succeeded in paying about a thousand dollars off on a dental credit card.  I couldn’t afford a six month check-up so I went on my year anniversary.  I knew something was wrong with my teeth, they always hurt, especially when I wake up in the morning.

No cavities, everything looked good but I explained my problem to the dentist and although I think I do not grind my teeth at night I think I clench them, I know I always sleep with my mouth closed.  The dentist pointed out to me that I had chipped my two front teeth and that my canine teeth were flat and not pointy the way they are supposed to be.  It’s not awful, you would only notice it if I pointed it out to you, but I had noticed my slightly chipped teeth before.

The dentist said I needed a night guard and yes you could buy one from a pharmacy but they don’t feel right and people end up not wearing them.  I know that’s true because Grant wore one for about two days before tossing it.  A custom-made one costs about $500.00.  He said that I am literally breaking my teeth and a broken tooth costs a lot more money to fix than five hundred dollars.

And so, with the check-up, X-rays and custom night guard I spent about $800.00 today!

And then went on to spend $19.00 on a haircut I couldn’t afford either but needed.  I hadn’t had a cut since April.  I’d been wearing it curly and putting it in a headband but yesterday I tried to blow it out to make it look nice so I could look halfway decent for a birthday party Tyler was going to and it looked like crap.

I asked Grant, “Does my hair look bad?” and making the ultimate husband faux pas, he said, “Yeah, it really does.  I think you should put it up in a ponytail.”  “I can’t believe you said that, don’t you know you’re not supposed to say things like that?!”  “I’m sorry, I’ve never told you that you look bad at any other time ever.  I’m sorry!”

I put my hair in a pony tail.  “How does it look?”  “It looks nice!”, Grant said brightly.  Stupid husbands.

On Monday night Grant and I broke the news to Tyler that one of our cats had suddenly died. He hadn’t said much more about her.  Then this morning I was in the kitchen and I heard him talking to our cat, Scotty.  “Are you sad that your brother died, Scotty?  Don’t be sad, it’s okay.” Scotty was looking at him and listening.  Despite the fact that Spanky was a female, I praised Tyler on how kind he was being to Scotty.

As I settled Tyler in for his breakfast he suddenly asked me a question I wish he didn’t have to ask me at his age.  “Mommy, what happens when you die?”  I was thrown for a loop, I just didn’t think he was capable of asking such a philosophical question when he wasn’t even four-years-old.

I said, “Well, when a person or animal is old, and Spanky was old, or very sick, they go up to Heaven. Just the good parts go up there.  Like what is in here and here”, I said, pointing towards his brain and heart.  “Tyler is more than just this knee or this arm”, and he started to giggle.  “You now how we always tell you that you are such a good boy and have a good heart, and are funny and smart?  Those are the parts that go up to Heaven.

“Spanky is up in Heaven with Grandpa Joe (my father) and Rosie (our other cat) and some fish.  Grandpa Joe waited for Spanky to come up to Heaven and then he took her to his room. And now Spanky is well and happy and is playing again with Rosie and Grandpa Joe. Grandpa Joe really loved cats.”

Tyler was smiling and laughing at that image.  And I was too.