BlogHer Conference 2012: Looking Ahead and Wondering

Posted on August 7, 2011 by

For those uninitiated, the BlogHer conference 2011 is coming to a close.  To read my devastation over not being able to go BlogHer’s past click here and here.  This year I was only able to once again, watch from the sidelines.  Next year, God willing, I will have the money to go.  We will have Grant’s disability money and we will hopefully have mine.  It won’t be a lot but we will be like millionaires compared to the way we’ve been living.  We talk a lot about traveling and Grant knows that this is the third BlogHer that I have missed and he wants me to be there next year very much.

(You may want to stop reading here if you do not want to be shaken to your core and be made very upset.  Okay, you have been warned.) 

People always say that I have got to be more positive, more optimistic.  Well friends, I tell them that I am not pessimistic, I am REALISTIC.  These past few weeks I have come the closest I have ever felt to dying.  Two weeks ago I was having a fever every day, freezing, sweating, nauseous.  I had wounds that were not healing, that would bleed profusely by me absent-mindedly scratching a mosquito bite.  The pain was off the charts, the medicine for it, a joke.  Two weeks ago, when my fever was running and I could not get out of bed or barely speak, I swear I felt God next to me.  “Do you really want to die?  Well here is what it feels like.  Be careful what you wish for.  Death is not the peaceful, calm you think, at least getting there sure isn’t”.

I was crying.  I thought of Grant and Tyler and my cat.  I thought about the things I enjoy, just for ME, writing this blog, my voiceover work, my book club, Twitter, Google+, and then I realized…life is fun.  Not just with Tyler.  There are fun things in MY life.  There are still books to read and places to go and candles to be lit and beautiful but cheap things to have. Money is coming.  I WILL travel.  I will take Tyler to Disney World one day.  And then I said to God, “Stop!  Stop!  I don’t need to see this any more.  I don’t want to die.  I thought I did but I DON’T.  I want to live, not just for Tyler but for ME, God please let me live, I still have living to do!”

And then, it was either God the steroids or both, I got better.  Not better like I am trying out for the Olympic team but…my fever went away.  My mouth sores were gone.  My wounds healed.  I bought that “Imagination” candle I had been thinking about from the Disney Store and the Alice in Wonderland Vinylmation and my surprise “Buy one get one free” Vinylmation “Pete” from the Mickey Mouse Club House show.  And all three things are with me right now, bringing me joy.

Last Tuesday, I went to the hospital again.  I had horrific abdominal pain, with all of the symptoms of an appendicitis.  Unfortunately whenever I go to the hospital I am such a complex patient that they often do not want to treat me.  They gave me an ultrasound on my stomach and then up my…well let’s just say I could have had a career in pornography, I took it like a champ.  There was a lot of waiting, a lot of blood-letting and peeing in cups.

Throughout this my feet were swelling, like they have never swelled before.  They were purple and red, as if I had not been walking on them, as if they were starting to clot.  They looked like….like the way my father’s looked as he lay dying.  Like the feet of death.  The only feet I had seen looked like that were my father’s.  All discolored, painful.  I kept asking if they would examine my feet, if they would treat my pain, but they didn’t want to do much until they figured out what was wrong with me.  Alone, in a private emergency room, I started to pray, I started to beg and cry.  “Dear God, Jesus and Daddy.  I have a little boy that I have to make it for.  You can take me, but please, not now, not until he is a teenager and he no longer needs his Mommy.  That’s all I want!”  People on Face Book were praying for me, people on Twitter and Google+ were praying and I thank them very much.

And suddenly, I was getting better.  My feet cleared up.  My diagnosis was spastic colon or a possible flare-up of my Ulcerative Colitis.  That was a lot better than, “You need surgery on your BLANK or your BLANK.”  They had been almost positive I was going to be needing surgery of some kind!

And then I was discharged.  And Grant and Tyler came to the hospital to take me home.

So, where was I going with this, what the Hell does this have to do with BlogHer’12?  Well, the truth is I am being REALISTIC when I say I may not be there…or here.  How lucky can I get?  When God wants me, he wants me, I can only continue to pray that I live to finish out being Tyler’s “Mommy”.

Really, where will ANY of us be in 2012 anyway?  Any one of us could get into a car accident tomorrow.  Our plane might crash, we could get breast cancer.

Yes, any one of us.  But for people like me, with Lupus and other serious, worsening chronic conditions, we REALLY have to ask ourselves, where will I BE?  Will I even be here to make it to an event that for three years now has been so unobtainable?  When I have the money for next year’s BlogHer…will I really…be here?

 

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Wake Me Up Before I Go-Go

Posted on August 4, 2011 by

You know that title isn’t even funny?  Even though it is?

If you read me regularly, follow my tweets, or are on my Google+ (as Emily Cullen), you pretty much know what’s going on in my life at all times.  Lately I am starting to have as much trouble as Job himself.  As you can gather from the title, I am having a horrible time staying awake for much of the day!

About 20 years ago I was in a major car accident.  The EMT said to me, “I don’t know how you were able to walk out of that.”  Yes, I was extremely lucky.  Always wear your seat belts! Anyway, about two months later, I was finding major difficulty getting out of bed in the morning.  I felt as if I was waking from a comatose sleep and I was extremely foggy. Frightened that my doctors might have missed something, I made an appointment with my family doctor.

“Have you experienced any kind of trauma lately?”, he asked.  I told him about the car accident in October and he told me that my body was still reacting to what I had experienced.  “See if it does not go away in a month.”  And sure enough it did.

I am really hoping that this is the same kind of thing.  I have been experiencing new trauma on a daily basis, who would want to get out of bed, much less, stay awake?  But lately, it has become worst, by the day, in fact.  I noticed on Monday that I needed five cups of coffee, some with ice cream in it, just so my eyes would stay open…while driving.  Yes, driving is the worst.  Like a newborn going for a car ride, my body wants to sleep..except it is me behind the wheel!  This, need I say, has been most distressing.  I don’t drive more than an hour any where due to my pain and fatigue, but this is downright scary.

I can drink a cup of coffee and go right to sleep afterwards.

Yesterday, I didn’t go anywhere but I was having trouble staying awake anyway, from about 3:00 in the afternoon onwards.  I took a nap, but it was not enough.  I took another nap at around 7:30 p.m. for about an hour.  I still could barely stay up.  I made Grant go out for ice cream.  “But you told me that you were on a diet, that I shouldn’t buy you ice cream, even if you begged!”  “Do you think I am fat?!  This isn’t because I want it, this is an experiment!!” I hissed.

Grant ran in terror and fear to the supermarket.

I put the ice cream (coffee) into my coffee and put in some mini Reese’s Peanut Butter Cups.  I fell asleep while drinking it.

“Go to bed, Emily, I will deal with Tyler,” Grant said, both scared and sad.

So this is where I stand.  Or sit.  Or lay.  Or sleep.  Tomorrow I see my Rheumatologist.  He is supposed to judge me to be well enough to take my immunosupressant drug, Orencia on Monday. Or he may want to switch me to the newest drug for Lupies, Benlysta, since I seem to be failing on Orencia.

And now I have this narcoleptic-like issue to deal with.

As always, I will keep you posted.

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Tuesdays With Tyler: Future Shock

Posted on August 3, 2011 by

(Usually this is the time where I write a light piece about something funny Tyler has said or done.  However, this time isnt it, so if you are looking to have a smile or a chuckle, you may want to skip this one.  However, it is a post that must be written and read, particularly if you are a chronically ill mom as it is every sick moms worse fear.)

On Sunday, my mother, who was visiting, Tyler and I went to a mall.  We had to walk from one end of the mall to the other.  My leg hurts! Tyler complained.  I didnt think much of it, I really thought he just wanted to go home because he was bored.

Yesterday morning when he got up, he called to me, Mommy, my leg hurts, I cant walk!  Of course I was frightened.  I asked him where the pain was and he pointed to his groin area.  He asked for a juice box and as usual I said, You can get that, Tyler.

No, mommy, I cant because I cant walk, I told you!

Now I was scared.  Grant, like a dummy, I thought, held a piece of chocolate out to Tyler and made him walk over to get it, as if he were some sort of a dog!  Tyler limped over to get it.  At this point I was calling the pediatric emergency triage line.  They suggested bringing him in to an appointment.  Due to Tyler being a boy, you did not want to fool around with the testicles and penis.

After examining him, the pediatrician found the pain was more local to his left hip.  The doctor felt that this was due to a post-viral complication that some children get, and that Tyler had temporary arthritis in his hip!  He told us that if it was still happening by Friday that he needed to be brought back in for some testing.  I did not want to know what the testing was.

Due to Tylers Tourettes, OCD, Anxiety, and Sensory Processing Disorder, going to the doctor is like torture for him, much more than the usual child.  I was pleased to see that he did his best ever!  When Tyler is sick we give him a Well Prize.  He knew exactly what he wanted and wanted to go to the Disney Store to pick up his Spider-Man action figure.  The mall that has a Disney Store nearest to us is about 40 minutes away.  But I had promised.

So my mother, Tyler and I piled in to the car and went off.  We had to rent one of those fire engine cars that you take your child around in.  It was either that or a wheelchair, and I did not want him to be scared.  He had a blast in the fire engine and loved getting his prize.

Until it was time to go to the bathroom.  I wanted to get a man to carry my son to the family bathroom, but he insisted on walking and when he did I just about died.  My little boy, limping like Tiny Tim, bravely walking to the bathroom.  Everyone starring at my crippled little boy.  I got sick thinking about it.

What if he was going to end up like me?  What if he has just gotten Auto Immune Disease from a virus, the same way it is theorized that I did?  What if he has that propensity within him, that makes him vulnerable to the same things I have?  

Of all of the things that I have suffered through this week and a half, two trips to the emergency room, a fire in my kitchen with Grant being burned, my mother and I being stung, this was by far the worst thing of all, seeing a glimpse of what every chronically ill mother fears; their child suffering like she does!

Today was a better day for Tyler, so I am praying that the worst is over.  And that nothing like this rears its ugly head again in Tylers life, so full of promise.

Mom and I at the Disney Store, with Tyler seated in his fire engine, holding on to his Spider-Man villain for dear life!

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Being Neighborly

Posted on July 30, 2011 by

I read The Costume Trunk by Bob Fuller.  As part of a member of the From Left to Write book club.  I was given a free copy as part of the book club.  This post was inspired by the book.

I eagerly awaited my copy of The Costume Trunk because it was a children’s book and I could not wait to read it with my son who is almost five.  As soon as he saw the book he said, “Ugh, this book is yucky, it’s for girls!”  I told him how Mommy was reading this book for her writing and I needed to read this to him so I could get a reaction from him.  “I won’t do it!, Tyler howled.

Sigh.  I felt a little twinge, the same way I learned when Tyler was a boy at first.  Please don’t get me wrong, Tyler is my one and only, my treasure and I could not imagine having a girl. But the book reader in me felt upset that we would not be able to share some of the classics that were normally read to little girls.  Madeline or Edith the Lonely Doll, for example.  When he grew older I would not be able to pass him down my collectible beloved blue Nancy Drews or share the Little House on the Prairie series with him.

I need to give the book to a little girl, I wanted to at least get a reaction from a child, since this was a children’s book after all.

On Monday, I met a woman named “Rebah”.  Tyler had just started Sports Camp this past week.  The local school was teaming with different camps in the fairly large building.  I parked my car and went into what I thought might be the main entrance that would take me to the gym.

I was wrong.  I was told where Tyler and I had to go was another entrance that was a two block walk.

I am disabled.  Walking two blocks is nearly impossible for me…walking back…I didn’t know how I was going to do it.

That’s when I met Rebah.  I was asking the camp counsellors if they knew of anyone who could drive me back because of the great pain and exhaustion I would have to suffer.  “I’ll drive you back”, Rebah said.  “Really???” “Sure, it’s no trouble.”  After both of us dropping our kids off, we started talking.  It turned out Rebah was sick too, but she also did not look it. I knew her diseases better than she did, and she also had some neurological difficulties, but nothing that would preclude her from driving a car or loving her children.

“Thank you!  Thank you!”, I exclaimed.  “It was no problem, it took us under two minutes by car”, she smiled.  I got out and said I probably would see her later.

I had no idea what would come later in the week.

My mother arrived on Wednesday night and she was happy to accompany Tyler to camp while I drove.  I got into the car and started screaming.  The pain was so bad, I thought maybe it was a tick entring my body, although that has never happened to me before.  “Mom, I have a tic!  Come help me get it out!”  My mother came running.  “Emily, there is no tic”, my mother said.  Well something had either bitten or stung my neck, the spreading rash and entry point of the bug, evident.  Armed with my Epi Pen, I decided to make the drive to Tyler’s camp.

Excuse my language, but it was hurting like a bitch!  I saw Rebah as we walked Tyler up to the gymnasium.  “I have Benedryl in my car if you want.”  “Oh, yes, please I would love a couple of Benedryl!”

I walked back to her car.  She had brought her little boy with her and he appeared to be of Asian origin.  I felt comfortable enough to ask her if her husband was Asian.  “No”, she said.  “My husband and I were unable to have children of our own so we adopted two children from China.  My son here who is three and my little girl who goes to the camp.”  This was so fascinating, I wish that I had the time to hear more!

Then I hear my mother scream!  The damned beast that had left it’s mark on me and taken the ten minute ride with us, and when my mother got into the car, stung or bit her!  There was Rebah with some Benedryl and  a first aid kit, which she simply gave to us.  After hearing that I had an Epi Pen and was allergic to bee stings, she insisted on following me home, which was in the complete opposite direction for her.

I was stunned.  People just do not do those kinds of things any more, you know?  I thanked her profusely.  “Oh, I was just being neighborly”

Neighbors do not usually do these kinds of things and Rebah was not even my neighbor!  I told her this and she laughed.   “Yeah, my mother always says, I am not just nice, I am “Minnesota” nice.”  It made me quickly want to move to Minnesota as I wanted to live in just such a place where people were so kind to each other.

On Friday, the last day of camp, I wanted to do something special for her, only I do not have any money.

But I had The Costume Trunk and wouldn’t it be a lovely gift for her little girl, Elizabeth?

I was pleased to give her the book yesterday morning and she was shocked that I would give her such a beautiful gift for her child.  I told her that it had really been no trouble.  It was free, I explained about my blog and The From Left to Write book club that I was in.  She was glowing and so was I.

The warm feelings that you get from “being neighborly” and people exchanging kindnesses is kind of the same feeling you will get when you read The Costume Trunk, which is a lovely book, both to look at and read.

I plan to make it my business to hold on to Reba’s telephone number and she asked for all of my contact information.

Because good neighbors sure are hard to come by.

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Women Bosses? Ugh!

Posted on July 28, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 5.) Write a post where the first and last sentence contain any form of the word “boss.”

Words of advice:  never take a job without taking an interview with whom your direct boss is going to be.

That was my mistake when I took my last job as a recruiter for a semi-large firm in April of 2007.  I wasn’t stupid, really, as their policy was whatever manager was available would interview a person for a job.

My first day of work, I could tell my direct manager, “Carrie”, loathed me.  She had just had a baby, I had just had a baby.  She probably weighed close to 175 pounds.  I was the same height and weighed 117 pounds. After the arrival of Tyler I had gotten very thin, mystifying my doctors.  The scariest thing though was they were checking me for cancer!  On top of that I had just recovered from a nasty stomach virus.  I looked skeletal, horrific, I looked like one of those “heroin chic” models in my size four office clothes.  My new colleagues would come up to me and say, ” You just had a baby?  You look amazing!” and I could feel Carrie seething at me.  No one was telling her she looked amazing.

I swear, Carrie reminded me of all of the petty nothingness you went through in high school, the jealousy over the pretty girls, the cattiness.  I knew more than she did in some things, I had very specialized skills, and she hated that.  She knew my salary, which was was quite high, and probably fairly close to hers, as I was brought in to fill a void the company was lacking in.

The deal was I was to work from home because the commute took me almost two hours one way, but I would train for at the office for two weeks.  It was right then that Grant’s mental health started to decline rapidly, which would ultimately lead to his being fired.  I knew that Grant wasn’t doing well.  I was uncomfortable being so far from him, but I needed this job, this brand new job.

On my first week there, one of the administrative staff burst into the office that I shared with Carrie.  “You’re husband is on the phone, he says it is urgent.”

“Grant, what’s wrong, where are you?”  Grant was crying, he could barely speak.  “Emily, I-I am sorry. I can’t take it any more.  I want to kill myself, I am going to kill myself.”  He was on the road, out on his job.  He was THREE hours away from me.  “Do you want me to come and get you?”  “No, it’s just…I think I could come home, I NEED you home!”  “Okay, okay, I am two hours away from home but I will get there, Grant!”

It was my first week on the job.  I did not know yet the depth of Carrie’s cold-hearted bitchiness.  I had to leave, but what excuse?  I could not lie to Carrie, as she had heard some of the conversation. I said, “Can I please take a walk outside with you?”  “Sure”, she said.  I told her that my husband was going to kill himself and I needed to get home right away. “Well of course, of course”, she said.  I was so relieved!  Then she said, “Emily…ah…do you think this is the best time for you to be working here?”  I didn’t get it.   “What do you mean?”  “I mean, you just started this job, your husband is obviously very sick.  I’m just saying…perhaps this is not the right time for you to be starting a job.  You have to learn an awful lot of stuff, and your mind is obviously elsewhere.”

I couldn’t believe it!  Carrie was trying to fire me!  She hated me from day one and was looking for any excuse!  I came back at her and told her I was 100% dedicated to this company and the work I was doing here, and I most CERTAINLY could handle this job.  Of course I was in complete shock. New job verses a very sick husband.  I told her I would be in the next day.

A few weeks later Grant agreed to commit to an in-patient stay for mental illness.  This had come after he had spent time in the hospital.  By this time, I was working from home and I didn’t DARE tell Carrie what was going on!  What business was it of HERS what I did in my off-time as long as I was putting in my 40 hours?  I remember one night going to bed at 2:30 and being ready to work from home right on the dot of 9 a.m.  No one was the wiser.

When I took this job and I heard that my direct supervisor was a mother of two with a 6 month old, and I had a 7.5 month old, I thought she was going to be a dream manager.  But she turned out to be cut from the same cloth as Satan.

Woman bosses?  Never again for me, if by some miracle I was able to go back to working full-time, which since it’s been over three years, does not look good.

What have your experiences been with woman managers or bosses?  Good or bad? 

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Tuesdays With Tyler: The Biggest Champion, The Smallest Child

Posted on July 27, 2011 by

(If you have been keeping track of me via Google+ (Emily Cullen), Facebook, or Twitter (@mamasick), you will know that I went to the E.R. again today.  For the second time in four days, if you are counting.  I do plan on writing a full blog, but today is Tuesday, and that always means “Tuesdays With Tyler” and so I didn’t want to cheat him, or so many who actually really love this part of my blog.  I will just say that I am home, they did rule out anything to do with my reproductive organs, which Lupus can attack, but they have not ruled out appendicitis.  The best case scenario is that it is a Spastic Colon, G.I. related type of issue.  I do have Ulcerative Colitis which is usually very quiet and I will make an appointment to see my Gastroenterologist.)

As amazing as Tyler is, is as sad I am that he has to be this amazing.  A child four-and-a-half, almost five should not have to be so wise, so empathic.  I wanted to write some examples of how not just how incredible I think my child is, but how incredible others around me think about him.  And then you can decide.

There are so many stories, I can only pick a few for length’s sake.

On Monday, I cannot believe that was only yesterday, Tyler started a week of Sports Camp.  I knew where the school was but it turned out I didn’t know where in the school Sports Camp was.  We wound up having to walk the length of about two blocks, briskly.  “Oh, my God”, perhaps I shouldn’t have said this out loud but I did.  “I cannot do this.  I cannot possibly walk back to the car.”  As we neared other people going to the gym, Tyler started to ask, “Can anyone help my mommy?  She cannot walk back to the car.  My mommy is sick. Can anyone drive my mommy back to her car?” He got me a ride home.

I also had my emergency appointment with my Rheumatologist yesterday.  Not surprisingly he said my Lupus is out of control as is my Fibromylagia.  He ordered blood work, wanted to see me next week and gave me a prescription for steroids.  It is the steroid prescription that I have a problem with. I have been sick since I was 16 but I have always been lucky enough, or have found a way to avoid steroids.  Mostly for vanity’s sake, I have to admit.  I have, while not any Eating Disorders, a big problem with being comfortable in my own skin.  And ever since I have had Lupus, I don’t seem to have a say in how much I weigh and my weight has fluctuated greatly.  Lately I have been gaining weight and I am around my heaviest ever. The thought of taking steroids and having the side effects of weight gain and facial mooning…let’s just say, it’s going to do a lot to my self esteem.

I was telling Tyler about the changes that Mommy is going to be going through.  That I may look a little funny but that it is going to help me get better and that I still will be Mommy.  “But you still will be pretty, Mommy”, he told me.  “Thank you, baby”, I said, as I hugged him and tried not to cry.  How can my little man be so young and already know what to say to a woman?

And also yesterday, Tyler and I went grocery shopping, just for a few things.  Tyler insisted on helping me with the cart as he knows it is too heavy for me to push without pain.  Usually he will take the whole cart, but of course I had picked one with a bad wheel, so we both had to push.  Him trying to help me actually made it more difficult and people behind us sighed impatiently.  I had to turn around to them and say, “I’m sorry, but I am sick and my little boy insists on helping me with the cart because he knows that it is too painful for me.”  And I watched their looks of annoyance with us change into either looks of shock or smiles.

Here I am at just over 700 words, and all that was just yesterday.  I feel so blessed in the gift that God gave to me that is my son.  The skinniest, longest string bean…who is the strongest man in the world to me.

Tyler and I at a Pirate themed birthday party, about a month ago.  Arrgghh!

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A Personal Best: Calling 9-1-1 Twice in One Day

Posted on July 25, 2011 by

I think if I were a reader of this blog, I would start to wonder:  Is this stuff really happening to this woman?  This woman has got to be getting this life out of a book or just has SOME imagination!

I know I would be wondering.

Anyway, on Saturday I took Tyler to a birthday party.  The kind where there is some huge structure and you let your child loose and you see him sometimes when he says, “Mommy, I am having so much fun!”

We were late to the party and as I was driving I realized that I had forgotten to bring any pain medication for breakthrough pain.  Oh well, I thought, I can make it through an hour and a half party.

Lately my Lupus has been raging out of control.  For those who do not know what that means, I run a fever every day, I am having to wrap up my wrists and knees to stabilize them, otherwise I cannot walk and cannot use my hands.  I am on huge amounts of painkillers which I will not name here. Sometimes, the pain “breaks through”.  I am nauseous every day.  With the fever comes a headache, of course.  My feet, ankles, knees, wrists and hands are swollen.  I have mouth sores and my tongue is often painful and swollen, and my throat hurts.   Yes, I am WAAAYYY below my usual level of crap.

Usually between my mania and painkillers I could make it through such a party.  But there was a “fly in the ointment” so to speak, or should I say a Spider.  Yes, Spider-Man came from New York City to Central New Jersey!  Actually, he was damn good imitation.  I am gabbing with mothers and fathers while the children are on a scavenger hunt with Spider-Man and a child screams, and unfortunately it is mine.  I look and, this was so surreal, Spider-Man is cradling my child in his arms, comforting my crying kid.  I hand another mother my coffee and cell phone and run over to Spider-Man and Tyler. Tyler’s tears are all over Spider-Man’s costume.  He had fallen and hit his head.  I wasn’t really scared but Tyler was asking for an ice pack.

And then, I think this is where I made my BIG mistake, I TOOK Tyler from Spider-Man.  I CARRIED my 38 pound kid over to a couch and comforted him.  One of the staff was right on the case with a…Spider-Man ice pack!!  By this time Tyler is ready to go,  I use the Spider-Man ice pack for myself.

The party ends.  I have a gift for one of my friends who has just had a baby.  We are the last two in the whole lot, it is a hundred degrees.  I am not even kidding you, she is telling me that I should be more positive about my diseases, and live and enjoy for Tyler.  But at the party she told me that I pay way too much attention to Tyler.  Oh, I love her anyway!  I understand at this point in my life that she does not grasp the severity of my illnesses, even though at Christmas-time her husband had…a brief stint with thyroid cancer, it was over and done with in a few months and they resumed their glorious lives.

Suddenly I scream.  “What is the matter?”, she asks.  “I just got some bad pain in my right arm.”  The pain is sudden and shocking, it just comes out of the blue and it is a 10 on the pain scale. “You’re bleeding!”, she then says in horror.  This has been another one of my symptoms that I believe is related to my Lupus.  I will be absent-mindedly scratching an old mosquito bite and blood just starts pouring out of it.  Ever since I have had Lupus I have been very slow to clot, but this has been out of control.  My friend, mom that she is, helps me stop the bleeding with a wet wipe and tissues and she goes on her way.

Tyler and I are all alone.  I am just driving in the parking lot, when the pain hits again in my right arm so badly that I need to pull over.  It is excruciating, it is unpredictable.  It cannot be safe to drive with pain like this.  I call Grant, FOUR times.  So much for having his cell phone by him at all times.  “I want to kill your father”, I tell Tyler.  “Is that just an expression, Mommy?” “Yes, baby that’s just an expression.”  I have no other recourse than to call 9-1-1.  I am TEN minutes from my home but this pain is too dangerous.  I am kicking myself for not remembering my pain meds.

It is difficult explaining my situation to 9-1-1.  Tyler is calm until the ambulance comes.  I step out to flag them down and they immediately grab me.  “My son! My son!”  “Ma’am, we need to get you out of this heat immediately!”  They are dragging me.  “My son is in the car!” I scream.  One of them gets Tyler and they give him a yellow stuffed bear that they keep for children on such an occasion.  Tyler is howling because he wants his goodies from the party which the EMTs are kind enough to get for him.  I tell him he can have any candy he wants, that he is being such a good boy.

I request to be driven home.  If I can take another pain pill and get some rest, I feel sure I can get hold of this pain.  Tyler is now very excited about driving in an ambulance.  One of the other EMTs drives my car home.

Can I tell you how hard it is to pretend that we are having a fun adventure for Tyler’s sake? The emotional toll it took on me not being allowed to cry and scream in pain?

We made it home and Grant was so sorry that he actually let me talk about every single thing that happened since I had left for the party, a great sacrifice on his part, listening to my chatter, and well he should be tortured.

You may now be asking yourself, “Well this woman has written over a thousand words as it stands…when does she then get to calling 9-1-1 again?”

When we all settled in to calm down and watch some t.v., I took some sedatives in hopes that this would help in conjunction with my pain meds.  It didn’t.  I am popping my lower dose pain meds like Pez when I realize, Just because I am not getting pain relief does not mean I am not heading towards a possible overdose.  You can’t keep popping pills just because they are not working.

I called my pharmacist and told her I was very sleepy and she told me that I can take a nap, but that Grant needs to check on me every so often so to make sure I have not become unconscious!  Then she said, “I think you should go to the E.R.”

I too was convinced and very frightened.  I am by now very used to packing for the E.R.; a good book, a magazine, my iPhone with headphones and then I call 9-1-1.  Tyler had also given me his little ambulance bear so I wouldn’t be scared, my sweet little boy.

Nobody would let me sleep until I was evaluated by the doctor.  Luckily there were not too many people in the E.R., amazing for a Saturday on a day with unhealthy air qualities.  I had to tell my story to at least four different people.  By the time the doctor comes in and asked me what is going on I said,”Well, did you read my chart?”  “No.”  Not the best bed-side manner.  So I tell him.

“So, you want to know if you are having an overdose?”  “Well, yes, or am I heading towards one?”  “The answer is no.  So, I will talk with the nurse to release you, do you have a ride home?”

“Well wait, I am here, why don’t you treat my pain?”  And he looked at me and he said possibly one of the most scariest things I have ever heard.

“I have nothing to give you.”

I was in shock.  I am in a hospital and my pain is so bad, so beyond anyone’s capabilities in the E.R. that I cannot be treated!

“Ms. Cullen”, he continued.   I just starred blankly at him.  “Do you have a Pain Specialist or Anesthesiologist?”  “Not yet, my life has been too crazy to seek one out.”  “Well, I suggest you make that your TOP priority.  Good luck.”

And then he was gone.  Now they let me go to sleep and I slept the sleep of a person who has been through a serious physical and emotional shock.  Due to the amount of medicine I had taken, they insisted on me staying in a wheelchair until Grant and Tyler were able to pick me up.

On Monday, I have an emergency appointment with my Rheumatologist.  For the first time in a long time, I am very scared as to what may be coming next for me.

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In Search Of…Sex Ed.

Posted on July 22, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 4.) Sex education! How old were you when you learned about the birds and the bees? Who taught you? Describe that experience.

I don’t know how young I was (four? five?) when I asked my mother where babies come from, but I remember asking her over and over again and her answer was always, “The man puts the seed in the woman’s vagina and they make a baby.”  That answer never seemed to suit me.

I learned a lot about sex from Dr. Ruth Westheimer and the dictionary.  I was 11 when I discovered her show, “Sexually Speaking” aired Sunday nights at midnight on a small New York City station, WYNY. I didn’t have a television in my room, but I had a radio and found her during my quest for something to fall asleep to, an insomniac even at age 11.

Dr. Ruth and the people who called in seemed to be speaking another language.  Masterbation? Orgasm?  Blow Job?  The next day I would look up these words in an unabridged dictionary my mother had bough in the early 1960s.  I was pretty disappointed in the definitions and why when I looked up “blow” and “job” could I not find the answer to what that meant???  I would listen every weekend, trying to piece together the information, trying to define the words through the context in which they were used.

Freshman year in high school in 1983 we were given a “Sexual Education” course.  I couldn’t wait!  I would finally learn what a blow job was and where a clitoris was, and who had one!

But it was very clinical, it was sort of like studying for an English class, except the terms were “testicles”, “fallopian tubes”, “Vas deferens”.  My mother had always helped me study for tests so this class was no different, but I remember her saying, “My God, Emily!  I don’t even know these terms myself!  A gonad??  Vulva??  Labia Minora???  What are they teaching you in this class?”

But study I did and as I was in Honors English, I was able to get an A in Sex Ed.

The last day of the class, the teacher who was very nice and “cool” said that he was going to pass around a paper bag and we were each to write a question that had either not been covered in depth or that we had not covered at all.

We all put our questions in the bag, but classes were only forty minutes or so long.  Would he get to my question??  I held my breath, while trying to look cool and nonchalant.  And then it came:

“What exactly IS oral sex?”

Of all of the questions, this seemed to throw him the most.  He hemmed and hawed.  I tried to look as though that was not my question.  The class waited.  I could tell some of the kids knew and some of them didn’t.

And then he said, “Well there is oral sex and then there is oral genital sex.  The person did not ask about oral genital sex and so I would say that oral sex is just….kissing.”

And then he then he threw my question in the garbage.

I was SO disappointed!  I was so wronged!  Would I ever find out what oral sex REALLY was??

I was a bit of a late bloomer but I did eventually figure it out, and partook in it, about six years later.

And so it begins again as my son has, at four-and-a-half, already asked me where babies come from. “Did you buy me?, Tyler laughed.  And I said, “Well, when a husband and a wife love each other very much, they make “crunchies” (his word for heavy kissing, don’t ask, I have no clue where he came up with that one!) and they hug each other and they make a baby.”  “Oh”, was all Tyler said.

I wonder if he will ever remember asking me that question…and if he thought my answer was satisfactory or not.

 

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My So-Called Disability Hearing, Part I

Posted on July 21, 2011 by

First off, I am sorry that I have not been able to blog sooner.  The mere act of skipping a nap on Monday and packing Tyler and I s’ clothes, the drive to the hotel, etc. has left me extremely ill.  Right now Grant and Tyler are at a library program, Reading to a Therapy Dog, so I figured I would get started. By the way, if it wasn’t for the library, my child wouldn’t be having much of a summer.  I fear the cutting of those programs.

It turned out, no surprise, that my Maquest’s directions to the hotel were…WRONG!  They got us to Newark, but that’s when they stopped being so helpful.  After stopping a couple of times to ask directions, I finally spotted the side of the hotel out of the corner of my eye. Three handicapped spaces for the WHOLE hotel.  I’d write “The Great Eastern Hotel” if I had the time, they were never not filled up.  While we were checking in, we asked if the front desk people knew where the courthouse was.  They said yes, it was very close by, but we decided to get directions in the morning. Having filled up on McDonalds (probably my first time in over 10 years) we didn’t need any dinner and I had packed plenty of healthy and unhealthy (comfort) food snacks.

Tyler had been a little scared of this whole outing.  A few months ago he asked me,”Mommy, what is a vacation?”, something that I feel no child should have to ask his mother and it really broke my heart, thinking of Grant and I s’ childhood.  I never remember NOT going on vacation.   But he and Eeyore enjoyed the amenities offered by the hotel:

and our view:

You can see New York in the far background

Even Eeyore pondered the view:

We watched t.v., had reading time, and Tyler went to bed around 11:00.  With the help of medications I fell asleep a little after 11:30.  David who?

When I woke up, God was I happy that we had stayed over and that I had set my alarm and wake-up call back-up for 7 a.m.  I could not walk, I could not stand up straight.  I was walking as if I was a baby “cruising”.  I woke up Grant and asked him to make me a cup of coffee, while I popped a pain pill and laid in bed, waiting for the pill to take effect.  Tyler had fallen asleep like a dog in our queen sized bed and he slept on.

Even though I was still not feeling well, I had to get up and shower…and iron!  Grant got Tyler up as just the two of us were going to go down to breakfast, complimentary!  Our lives are so pathetic, I actually enjoyed being in a REAL hotel.  I haven’t been in a hotel since they had flat screen t.v!  The hotel served a lovely breakfast.  Tyler is such a character.  EVERY person he meets he says, “Hi, I’m Tyler, I’m four-and-a-half, almost five!”  Most people think it is very cute, some either do not hear him, or at least, pretend not to.  Then his feelings get hurt and I have to tell him that he has a little voice and he is a little boy and people are tall and cannot always here him, or they are too far away.

Knowing we were just two blocks from the hearing, I cut it pretty close, we left at 9:15 as I was supposed to meet my lawyer by 9:30.  I stopped by the front desk and asked about the courthouse. “What courthouse two blocks away?” was my answer from BOTH of the front desk people!  They started to look on their stupid computers but they could not help me.

“Forget it!” I said and we rushed out to the car.

It was a bit like out of a movie but thanks to some kind Newark…ites?….Newarkarians?…and many illegal turns and the wrong way down a one way street, we finally got there.  I was late.  I had called my lawyer’s office while Grant was driving and told them that we had gotten lost but we were close and I would DEFINITELY be there.

At about 9:36, we pulled up to the courthouse.  The plan was for Grant and Tyler to go back to the hotel, chill out, watch television, maybe read or do a puzzle, etc. while I was in for one of the most hellish days of my life.  But what else could we do with Tyler?

And so they left me with kisses, I love yous and good lucks and there I stood, alone.

END OF PART I

(Please note that I put up only part of the story because it is a very long one and I was getting many requests.  As many already know, what happens next is honestly quite brutal and I have been mentally damaged from it, as well as physically.  It might be a couple of more days for the next either part or conclusion, depending on how it writes out.  I plan on having my usual rest of the week, doing Mama Kat’s tomorrow and hopefully Friday Fragments.  Blogging this story will be extremely difficult for me but I feel strongly that sick people who are wondering what a hearing MAY be like might want to experience mine, and that well people should realize what we chronically ill people are going through in these fine disability courts in this country EVERY DAY.  Thank you.)

Also special thanks going out to Cynthia Biaggi, @MomBto3, a wonderful friend who lent me the money so that I could stay in this hotel.

“True friends do not value you for what you can do for them – they simply value you.” Ruhani Rabin

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My Disability Hearing Is Tomorrow

Posted on July 18, 2011 by

So of course I am up at 4:30 and cannot go back to sleep, thinking about all of the things I have to do for it, which includes packing a bit of stuff for Tyler and I, Grant can pack his own stuff, as we have decided to stay in a hotel overnight because I cannot see myself having to get up at 4:30 or 5:00 in the morning to drive all the way to Newark.  You can learn more about that decision from my last post.

We are going to get our flat tire looked at today too.  The man who changed it and put on this “not quite a donut but not quite a real tire sort of thing” said he thinks the tire can be patched, saved, and we will not have to buy a new tire, which we really cannot afford, but you cannot dare drive such a long distance on the spare.

I have still to write down all my diseases and medications, there is a 50/50 chance that the judge will let me read from them.  I am afraid I will not remember my more than a dozen conditions, how they affect me; all of my meds, and how they affect me.  This should be a long trial if the judge wants to hear all of it!

I have to pick up more pain meds and Xanax later today, and buy some ice to keep my ice packs cold.  I might even take along some hot packs, maybe there will be a microwave at “the hotel”.  I will be taking my ice packs to the trial, along with my ACE bandages for my wrists and knees.  I honestly use those things every day so my lawyer said to take them to the trial.

I am in such shock that tomorrow is finally the day.  I liken it to when I knew I was going to be induced with Tyler, only this time he will be with me.  I told him we were going on a little vacation because he is scared about staying away from home, afraid we will never come back here.

But like at the end of my pregnancy, my mind just sort of went into a detached mode, not letting me feel the emotions that would probably cripple me.  I knew this horrific thing (labor!) was going to happen to me.  There would be an outcome (a baby) but I did not know exactly what would happen to get that baby, you know?

Grant is feeling more like when they took Tyler away from us due to all of the court proceedings, and so I know he is more freaked out than I.  He will be taking care of Tyler during the trial, maybe going back to the hotel and hanging out until check-out time.  We are staying at the “Great Eastern Hotel” if you get my drift.  We will bring a bunch or books and toys to keep him entertained, and of course his beloved Eeyore.

I don’t know if I will be able to write any more before the hearing although I am going to take my laptop and hope they have Wi-Fi.  I will always have my phone so I will tweet a little, except not in front of the judge!

So if this the last time I speak with you, please, everyone, think good thoughts, vibes, pray, etc., that this part of the nightmare that is my life will end and justice will be served.  I am nervous, but I feel good about it.  I am bedridden/housebound for God’s sake.  I am hoping my judge feels a kinship to me, as a woman, maybe she has some kids, because I know I will weep and I will comment if I am asked to.  During both of my preps done by the lawyer, I cried. It is very emotionally damaging when you have to tell someone EVERYTHING that is wrong with you and EVERYTHING that you take and how EVERYTHIING feels.  Hopefully I will be able to keep my manic mind together, my lawyer will give me a little wave if I am going off track.

Tuesday, July 19th, is finally my day in court.  Please, everyone try to think about me at 10:30 EST.  I need all the help I can get, and know that you will be with me, just a tweet, a Google+ or a comment away.

Thank you.

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