Losing, Keeping and Making New Friends

Posted on October 6, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 5)  This message has been floating around Facebook for a couple of weeks:

“If someone wants to be a part of your life, they’ll make an effort to be in it.  So don’t bother reserving a space in your heart for someone who doesn’t make an effort to stay.”  

Who does this make you think about?

Usually Mama Kat’s Writer’s Workshop is an opportunity for me to step out of my usual, for my audience to get to know me in other ways through writing prompts that allow me to talk about my childhood, my teen years, and my life before I was sick.  There is usually nothing about the fact that I am disabled by my chronic illnesses in these posts, and if you were visiting from Mama Kat’s and didn’t look at the title of my blog, you may not even know that I was sick.  And that is exactly why I like Mama Kat’s weekly writer’s prompts.

But if ever a prompt screamed out “Emily’s Blog!” or “Emily’s Mission Statement!”, it is this one.  We all lose friends through one way or another.  Like divorce, sometimes friends just grow apart in their ideologies.  A friend may move away and life makes it impossible to keep up with each other. Sometimes their can be a huge blow-out between two people and they never talk again.

When you are chronically ill, the loss of friends makes a huge impact on your emotional and physical well being.  You are going through the toughest times of your life, and the ones who are your true friends, and who believe that you are actually that ill and will never get better, stay.

As a person that is living a chronically ill life, I am finding that the sicker I get, the more friends I lose. I have been extremely ill for four years now, although I was diagnosed with Rheumatoid Arthritis in 2003.  This year I have been to the hospital four times.  I have lost hair, I have gained weight, I have picked up infection after infection.  This has probably been my worst year and I am still surprised to find friends whom I have known over a decade distancing themselves from me with no explanation. I feel they are afraid to see me this sick and are afraid that I might be contagious to them or their children, when it is they who are dangerous to me.

So what do I do to make up for old friends leaving?  I find other people like me; through support groups, Twitter, Facebook and Google+.  There have been a few people whom I just needed to tweet out that I needed support and were right there with their phone number so I could talk to them.  I have met true friends through blogging and certainly met them through my own blog, a unexpected bonus.

Tyler’s friends’ mothers are becoming some of my friends too.  Perhaps it is because they have only known me as sick, they do not have to feel sad and compare me to the way I used to be.

I have about three friends that date back from junior high, high school and college.  They are the ones consistently trying to make the effort to stay in my life, even if it is only a couple of times a year, or if we have to take out our planners and find a date two months in advance that is good for the both of us.  They understand when I am too sick on a planned day and have to cancel.  They believe me.  They are not afraid of me.  They accept me for the person I am NOW and whatever may come my way, they are going to BE THERE FOR ME.

I understand those whom have had to “drop out” of my life because they just could not take hearing any more bad news.

I have heard that if you end up with two or three people in your life whom you can truly call a friend, then that is really all that is important.

I guess I am still doing okay.

 

 

 

 

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | Tagged , , , , , , , , , , , , | 11 Comments

Tuesdays With Tyler: The Trip to the Big City

Posted on October 4, 2011 by

On Friday we took Tyler in to New York City for the first time.  If you want my take on it, you can go here.  This post is about how the trip went for Tyler.  We decided to go to the Museum of Natural History where they were having some special exhibits, including the biggest dinosaurs ever discovered (way bigger than your average T-Rex) and a frog exhibit.

It was fun seeing Tyler experience everything from going on a train to looking at the huge buildings to seeing where Spider-Man fights crime to taking a mad dash taxi to the museum.

Tyler was not so excited to see the exhibit on Early Man, although he did enjoy seeing the brains of different types of animals, including humans.  I was amazed by how he picked up on me telling him about the exhibit and that he was able to explain it to Grant perfectly.  So were the people around us!  Yes, my child learned something!

There was a lot of whining going on during the exhibit on Minerals and Gems.  After lunch we went to see the largest dinosaurs ever discovered.

This sucker is so big I can't even take a picture of his whole body, that's just his neck and head!

 

This was geared for children so Tyler really enjoyed this.  Just as his father is in museums, he became obsessed with certain parts of the exhibit.  They showed a movie on the dinosaur about how it breathed, where it’s organs were and how it reproduced that Tyler made us sit through three times.

Tyler watches the huge dino's head and neck as it eats leaves on low trees and moves to high trees. Note the lungs and heart above.

 

After that exhibit came the hundreds of dinosaur bones and other animals that we thought would wow Tyler.  But these are just a bunch of bones!  You’ve seen one, you’ve seen them all.  Tyler told us he was tired and didn’t want to see any of this stuff!  So while Grant walked around we parked my wheelchair and Tyler sat on my lap and played games on my iPhone. Here we are, in the greatest Natural History museum in the world and Tyler is playing with Talking Ben!  The mind boggles!  I guess he is a true child of this techno world we are living in.

Then we went to the gift shop.  The shop is three floors long but we just stayed on the first floor. There was any kind of dinosaur toy or book you could ask for, tons of cool puzzles and games, but Tyler wanted…Lego.  Yes, the kind you could buy in Target or Toys ‘R Us.  I looked at the price, it was double what we pay where I live and refused him.  That’s all he wanted, except for a lollipop, which was a really cool lollipop.  So we rested while Grant explored the entire gift shop.

I think this was Tyler's favorite part of the museum.

 

After this respite we went to see the Frog exhibit.  Grant and I had no idea what this exhibit would be like but it turned out to be frogs from all over the world in their natural habitat.  We all thought it was pretty cool, especially the most beautiful frogs you have ever seen in your life…that can kill you! How awesome is that?

Separated only by glass, Grant and Tyler look at the beautiful yet most deadliest frogs in the world!

 

After that we were all ready to call it a day.  We had probably visited only about 25% of the museum, we had not even touched the planetarium area.  Tyler having the attention span of a five-year-old matched Grant and I s’ exhaustion level perfectly.

 

 

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , | Leave a comment

The Day After the Day After

Posted on October 2, 2011 by

No, I did not survive a nuclear explosion, I just feel like I did.

I’m talking about when a chronically ill parent decides they are going to give it their all, usually to do something stupid if not impossibly beyond their body’s capabilities, for their child.

On Friday, Grant and I took Tyler into New York City for the first time, to the Museum of Natural History.  I had not been to the city in five years, right after Tyler was born, even though New York is about an hour away from me.

On Saturday I remembered why that was, as every system in my body, gastrointestinal, joints, muscles, brain, etc. screamed in agony and protest.

But first, let me tell you how I got that way.

On Thursday we were supposed to go to my cousin’s house for a Jewish New Year celebration.  It was early for the kids, the dinner was at 3:30, which is good for the kids, but is right in the middle of my nap time.  I am at the point where if I do not take a nap, I cannot make it through the day.  I mean, I will involuntarily fall asleep at some point or get a major headache or be sick to my stomach if I do not lay down.

I couldn’t picture getting through the day just continuously drinking coffee so I laid down for an hour and a half, but when that alarm rang there was just no way I was getting Tyler and I ready and sitting through a usually really good time, you know?  I called my cousin, I can barely remember the conversation, and passed on our regrets.  He is a great guy and understands my last minute cancellations.

And then my feet and hands began to swell more than they already were and the nodules made themselves known.  I have this topical cream that I rub into my joints and Grant was rubbing my feet.

And then came Friday.  New York City Day, Tyler’s First Time in New York, Going to the Museum of Natural History.  Grant was looking forward to it even more than Tyler was.  To disappoint them and say I could not go was not even in my realm of thinking.  My feet may have had lumps in them, but I was going.  I find I can walk more when I bandage my knees. We were going to try to minimize my walking, by taking a cab to the museum and getting a wheelchair for me.

But it was still more walking than I do in a week; walking from the parking deck to our train station, walking through one of the largest train stations in the world to get to a cab, and walking up to the entrance of the museum where I could finally get a wheelchair.

Yes, there was a damn good reason why I had not been to New York in five years.  And by the way?  It was like I had never been away, New York will never change.  I’ve either lived in one of the boroughs or been an hour away from my New York my whole life.  I have been everywhere I need to go, most of the museums, Greenwich Village, SoHo, a few Broadway plays, seen all the tourists spots when I was little or when I was older with visiting friends.  As far as I am concerned, from where I painfully sit now, I never need to go back there again.  I still think it is the greatest city in the world, a must see in your lifetime, but I have pretty much done New York and the next time there is something in there I want to see, I will just buy a book on it and become an armchair or bed traveler.

So even though I was in a wheelchair, I can walk.  But just because one can does not mean one should.  

Grant was particularly looking forward to a the newly refurbished exhibit on Early Man, but particularly the tools and drawings of early man.  I had forgotten what being in a museum with Grant is like.  When he comes for something in particular, you could just leave him there for the next three hours and see the museum by yourself.  Tyler was whining and rightly so as most people would find this extremely odd behavior, especially with a five-year-old in tow. I had no choice but to show Tyler other parts of the Early Man exhibit on foot and then on to Gems and Minerals as Grant was still riveted to ONE PART OF ONE EXHIBIT.  I had to take Tyler to the bathroom on foot.

Grant was very good about pushing me through the museum, I never had to walk anywhere far, but the little walks added up.  I walked through the special exhibit of “The Largest Dinosaur Ever Discovered” and through the gift shop.  The last thing on our “to see” list was the special frog exhibit. There were strollers parked outside the entrance to the exhibit and we asked if we could take a wheelchair in.  The woman taking our tickets asked me, “Can you walk?”, which I thought was kind of a strange way to phrase things, and said that it was awkward having the wheelchair in the exhibit.

So although the exhibit was small by normal people’s standards, I walked the whole frog exhibit.  I saw the most amazing frogs ever, but again, next time I will just buy a book.  I was hurting so much. Walking with nodules on the soles of your feet is like walking on rocks inside of your feet.

And then Grant wheeled me to the exit where I had to do the same amount of walking I had to do to get there in the first place.

Yesterday I just got sicker and sicker as the day wore on.  I spent most of the day laying down, trying to sleep through the pain and nausea.  I was completely useless.  Gone went my plans for the day.  No karate for Tyler, no food shopping, no buying a birthday gift for a kid whose birthday party is today.  I was too sick to blog, thus the title of this post.

I told Grant that Tyler was of an age where he could handle taking him to New York by himself and that I would not be going in the future.

It is a sad life but honestly I feel better and feel almost good and well, if I stay at home and do nothing.  When my mother comes and does all the cooking and dishes and cleaning, I actually feel like I am on the mend.

I am at that point where were it not for Tyler and Grant I would choose to be completely housebound.  I’ve got the internet, I’ve got a television and an iPhone. What else do I need?

Who’s with me?

If I never had had a child, and had someone do my hair and makeup every day, I would look just like her.

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | 7 Comments

Fishing Trip and Other Tales

Posted on September 29, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 2.  A memorable fishing trip.

I’ve only been fishing one time so right there that’s pretty memorable.  But this isn’t so much about a fishing trip as it is a story from my youth.

I was 16 and I had my first job.  I was pretty but I didn’t know I had turned into a pretty girl.  I was a waitress at a delicatessen, sometimes I would work the cash register.  The job was an awful one, but I was no quitter and I liked the money that I got from my tips.  When I think back to some of the things that happened on the job, I wonder if it is like that today, and I feel sorry for today’s working teenagers, especially the girls.

My bosses treated me, and all of the waitresses, like garbage.  I wasn’t just hit on, I was out and out molested, with one of my co-workers pinning me up against a wall, unzipping my uniform and jamming his tongue down my mouth.  I struggled from his grip, managing to escape any other damage.  Everyone just thought it was a riot.

And then there was Mel, seriously his name was Mel, and he was our short-order cook.  He liked me right away and he respected me.  The only problems were:  he was not cute enough for me, this WAS his career, and, oh, yeah, he was 21 years old!  I think if he was cuter this would not have mattered for me, although I was quite the innocent, having not even kissed a boy yet, “all the way”.

Mel would always ask me out and he would promise to be a gentleman.  “Just go out with me, I promise we will have fun.”  I always turned him down politely although I liked being his friend.  One day it happened to come up that I had never gone fishing.  “You’ve never been fishing?  Oh, please, you have to let me take you!”  He wanted to go on our lunch break one Saturday to a nearby pond. I agreed to go, but I wanted it to be just friends.

Mel brought all his fishing gear and bait from home.  We drove in his car that was something like a Gremlin, one of those really awful cars.  And Mel was true to his word, he did not try a thing with me and I felt comfortable with him.  We didn’t catch any fish, but it was a pleasant time nonetheless. Mel had packed a picnic lunch for us, I think with free stuff from the deli. So we probably ate pastrami and drank cream sodas while we fished.

Mel took me on another one of my firsts, canoeing.  We went on a day when the deli was closed for a Jewish holiday with some of the other people from the restaurant.  Mel picked me up at some obscene hour, like 4:30 a.m. because we had a bit of a drive.  As I got in the car he exclaimed, “You are wearing makeup!  It is 4:30 in the morning and you have done your hair and are wearing full makeup!”  But in those days I never went anywhere without my makeup at any time, day or night.  I didn’t think I was pretty enough not to.

I remember getting to the canoe place and the only other female, a woman in her mid-30s with two kids, was really annoyed at me for wearing makeup.  The whole trip everyone was remarking in a good natured type of way how they all looked like the dregs of humanity on the canoe trip and I looked like a model, my hair and makeup totally unscathed.

I hated canoeing, I wasn’t in shape and I gave out early.  Mel had to mostly row our canoe himself. And we got bit everywhere by mosquitoes, I mean everywhere.  

That was my last time canoeing.

Another time Mel invited me to a party at his apartment.  I was going to go with a girl who worked there who was my age but who was a lot more savvy, so my parents said okay.

It was one of the weirdest, most disappointing, most fascinating times of my life that I can still see so clearly.  Mel’s place was a dump.  There were tons of people I did not know, but there were a lot of people from work there too. Mel came over to me and told me he had some, I think it was Percocet, and he asked if I would like to sniff it to get high.  I said no; I was really shocked that he would ask me but I guess he thought he was being a good host. This was probably one of the reasons he was a short-order cook instead of going to college.

And then Mel told me that in the other room people were doing cocaine and would I like to try some of that?  I said no, but could I watch them?  I went with my friend into the room where I came upon a scene that is still burned in my brain.  They had the coke on a mirror, to me it looked like a lot but I had no idea, and people were snorting it.  I watched, amazed yet horrified, as the people I knew began to do it.  I was especially shocked when I saw the mother of two doing it.  I wondered how she could take care of her kids when she got home when she was high.

After that party, I never felt the same way about Mel and I never went anywhere with him again.

You may be asking yourself, where were my parents in all of this?  Well they were interested, but not enough.  They never asked me what was going on at work, maybe I would have told them, but I liked the money too much to quit, never thinking that I could get another job.  The food was good too and I didn’t realize how wrong it was for guys to be harassing me, I thought this was just what went on when you were in your working teenage years.  My parents did ask me about Mel but I told them all of his bad points and that I was not interested in going out with him and so they trusted me.

I was very innocent and so were my parents.  They were lucky that they had such a level-headed kid on their hands.

That job and the people there certainly opened my eyes about life.

If any lesson should be taken away from this, I would tell parents of teens to ask questions about their kids’ after school and weekend jobs, just like they ask how school was.

My first job was a lot more dangerous than high school ever was.

 

 

 

 

 

 

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | Tagged , , , , , , , , , , , , , | 3 Comments

The Walking Dead

Posted on September 28, 2011 by

The Social Security Disability Doctors said it, some of my friends on Twitter are saying it, and my last psychiatrist was suspecting it; maybe I am indeed bipolar.  I thought the two extremes would have to come at the same time, and I have been depressed much longer than I have been manic, but after several months of being manic, in these last few weeks, I seem to be in more of a funk, more pessimistic than optimistic, more sad than happy, more dark side than light, with me still being able to see the light, but it being further away than the dark.  Perhaps it is from this darker side that I write this post.

You may remember that last month I went on the “ShutMyMouth” diet and some of you vowed to even do it with me.  After the first week of sticking to the diet I weighed myself and found that I had GAINED five pounds!!  It was then that I realized that this was more than a case of just overeating, something was wrong with me.  It wasn’t just the quick weight gain, there were a host of symptoms that I started to put together after that.  Actually most of my symptoms were the same, they were just MORE!  More tired than I ever have been, falling asleep talking, more confused, being half a block from my house and not recognizing where I was.  I also noticed that my voice was deeper.

Many people who are reading this are probably thinking I have some sort of thyroid disease and that’s what I was thinking too.  Indeed, I was a text book case for Hashimoto’s Thyroid, an Auto Immune Disease, which is actually one of the first AI Diseases to attack those who already have an AI Disease.

I went to my Primary Care Doctor who agreed that I most likely had Hashimoto’s, but to both our surprises, my lab work, while some results were on the edge of normal, were still in the normal range.  I took my symptoms and results to my wonderful Rheumatologist who all but tossed those results, saying I needed a full work-up and referred me to an Endocrinologist.

I had seen her about three years ago.  I had extreme Vitamin D deficiency and Osteopenia, the pre-cursor to Osteoporosis.  It was mainly for a two-time consult and I never saw her again.

As luck would have it, there was a cancellation and I called last Monday and got in to see her on Tuesday.  I was weighed and measured.  I now have Osteoporosis and have already lost an inch in height!  I have always wished to be petite, be careful what you wish for, I guess.  I came into the patient room in shock by my loss of height, in only a couple of years.

When the doctor came in I told her that we had met before although I am sure she would not remember me, which she didn’t.  “I’ve only gotten sicker with more diagnoses”, I said. “Don’t say that”, she laughed empathetically.  “Well it is true.”

She immediately latched on to my Osteoporosis, and wanted me to have another bone density test but insurance will only pay for one every two years and my last one was last year.  She was obsessed with my bone loss, you know it is bad when in the middle of your exam the doctor stops and says, “Let me call your Rheumatologist”, and then she leaves and dials a magic number where she is instantly put through to the doctor’s office that I have been calling all morning.  Can I have that number, please?  What are those secret numbers?!

Then she started to look at my family history which contains both thyroid issues and diabetes.  I had Gestational Diabetes with Tyler.  The belief is that if you have Gestational Diabetes, it is only a matter of time that you will get Type 2 Diabetes.  Diabetes, no offense to anyone here who has it, is one of those diseases that I feel I could not handle.  The eating restrictions, the blood sugar testing, the dangers of the disease.  One of my aunts is now blind because of it.  It contributed to my maternal grandfather’s death in his mid-60s.  She said that I was eating like a pre-diabetic, a life of sugar and caffeine.  But what else can one do when one has to stay up?  If you do something differently to stay up when you have to be awake, I would like to know about it, please!

During the middle of my examination she noted my swollen, blue-ish feet.  She touched them. “Raynaud’s?”, she asked and I said yes.

And then we got to my thyroid and hormones.  She wanted me to have full blood work for both and do that annoying 24-hour urine test collection where you have to give up a day of your life and stay home and capture all of your pee in a bottle.  She also wanted me to have an ultrasound of my thyroid to test for nodules.

During the entire exam I was thinking,”What am I doing here?  Why am I even bothering? So I can add to my more than a dozen diagnoses?  Am I merely prolonging a life when I am slowly dying?”

When you are chronically ill and in chronic pain and feel like chronic shit, you wonder these things.

I am one of the walking dead.

As I said in the beginning, I do see the “light” side, somewhere deep down.  I am living for Tyler and my husband needs me and so do my readers.  Some parts of life are still fun, but then my dark side says but is it worth how sick it makes you feel afterwards?

I am in the dark side right now, thinking When WILL I die?  Why do I keep doing this every day? Why do I keep on going, walk around looking like a mummy with so many joints bandaged, feeling so awful every single day?

I never realized that people would read me and count on me to be there for them, and sometimes I feel I always need to be the voice of reasoning and reassurance for them, the one who has been through it all and is now wiser.

Lately I have been feeling that I could use some one like that in my life.

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | 7 Comments

On Being Remembered

Posted on September 26, 2011 by

(I read Cleopatra A Life as a member of the From Left to Write book club.  I was given a free copy of this book.  This post is inspired by the book.

Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our five-year-old son, who also has some special needs.  My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. )

One does not have to read Stacy Shiff’s book Cleopatra A Life to believe that one knows all they need to know about the Egyptian queen.  Many of us have read about her through Shakespeare, or confuse her image with Elizabeth Taylor’s portrayal in the 1963 movie, Cleopatra.  Even if one has never read about her through plays or watched the classic film, Cleopatra is as notorious or famous now as is our modern day Lady GaGa.

And yet, without reading this book or a book that writes about Cleopatra’s actual history, you would have many misconceptions.  She was not a great beauty “a la” Liz Taylor.  A temptress maybe, but she did not have much time to do this tempting as she was dead by age 39.  There is only evidence that she actually had sex with only two men in her life, but they do happen to be pretty important ones, Julius Caesar and Mark Antony, sound familiar? She was married twice, each time to a brother.

Most will not read this book or any other that is historical, and so the misconceptions about the Queen will live on.  But above all, Cleopatra was a shrewd strategist and an ingenious negotiator, who in her short life, reshaped the ancient world.

As I read this book, I thought about how I would want to be remembered.  Poor Cleo must be “rolling over in her tomb” if she is able to.

What do people think of me right now?  If you are a faithful reader to this blog, I would say you know me pretty well, better than a lot of my friends and family.  If you are not a regular reader of this blog, a first-timer, you may wonder how anyone could be so sick, or think they are so sick that they could give up a successful career as a headhunter, a good salary, and raise her child in poverty.  How could anyone do that?  Isn’t their something this woman could do to support her family, instead of living off of our government for food stamps, and seeking disability, when she is only 41 years old? Maybe it makes you mad when you think that somehow she is taking your tax dollars to live off of. That if you were sick, nothing would stop you, that you have a family to support and whatever came your way, even if it was cancer, you would still get up every day and go to work, that you would have to, that you MUST!

Perhaps you wonder how anyone could have 15 diagnoses and live?  Is this woman telling the truth?  Is she one of those bloggers who makes up a life in order to get successful through advertising?  When will she die?  Surely, no one could claim to be that sick and be able to throw her child a birthday party or celebrate Christmases or take her son to karate classes.  Something just does not add up here.

If you see me in real life, with bandages on my wrists and elbows, you may wonder what in God’s name is wrong with me?  What the Hell happened to her?  If you know me well and know that I am on an immunosuppressant drug and that I catch colds and weird infections frequently, you may be scared to be around me.  When exactly the opposite is true, it is you who are a danger to me.

What do I want to be remembered for when I die?  It is something I do think about frequently as if you do the math, it does not appear that I will live to a ripe old age, that at 41, my life is more than half way over.

Maybe Cleopatra didn’t think much about what her legacy would be, but I have had plenty of time to, as I am not busy ruling over a country and am more likely to be found in bed in my pajamas.

When I die, I know a world will not mourn my death, or be thinking about me over two thousand years later, but I know those who are my readers, close friends and family will.  I would hope that with this blog and the way that I live my life and through my conversations, that I have brought comfort to a few thousand or so people who are sick and raising children, just like me.  That I have educated healthy people on what being chronically ill is like and that NOT just the uneducated, those mothers who are not sure who their “babys’ daddies” are, or illegal aliens need food stamps; that there are disabled people who need them too.  That those who use scooters or wheelchairs are not just old, quadraplegic or have a terminal illness.

I would like to be remembered as someone who used her 15 illnesses to make a difference in this world.  Maybe not to millions but to those few whose lives I have touched.  I would like to be mourned not as a sick person who died slowly, but as someone who lived every minute of her life to the fullest.  As the best mother she knew how to be, the best wife, relative and friend that she was able to be.

And now let’s talk of my death no more.  I have a life to lead now.  I have to get ready to start my day which includes getting an ultrasound done on my thyroid, picking up a big bottle for a 24 hour urine test, making a shopping list and buying a few things at the grocery store, and planning tonight’s dinner.  I am thinking about what my son and I will do when he comes home from school. I am looking forward to the new episodes tonight of “Gumball”, “Adventure Time” and “The Regular Show” on the Cartoon Network, which my whole family loves.

Maybe you are going to do some of those things too.

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 7 Comments

Results of the Social Security Doctors’ Exams – It Ain’t Pretty

Posted on September 22, 2011 by

Before you read this post, you might want to read my first post from last month, when I went to the Social Security doctors that the judge asked me to in the middle of my disability trial.  It has been over two months since my trial and I am trying to believe that no news is good news, but honestly, those on trial for murder have received speedier verdicts!

I received the results of my medical exam last week.  The first page was a letter from my lawyer which I took to be a rebuttal of the results, saying that you cannot compare two 20 minute examination to years of reports from my treating doctors.  Oh, God, I guess I did not do as “well” as I thought I did!  Here are some highlights of the results.  Read back to my first post, compare and you can decide for yourself:

There was a lot of “she claims” and “she says”, instead of “she has”.  They felt the need to tell the judge that I was overweight and 159 pounds and 5 feet 5 inches tall (I have already lost an inch from osteoporosis), I guess to say, “Well her problem is that she is fat and that is the cause of her pain.”

“…Physical examination…Neuro:  Mental status, cranial nerves, pinprick, vibration, reflexes, muscle strength, position sense all normal.”  Say what, now?

“Range of motion of hands, wrists, elbows, shoulders, normal.”  Excuse me?”

“History of Lupus.  I would strongly suggest that we get documentation for this including a SED rate, rheumatoid factor, and anti-DNA looking for evidence of Lupus…Bipolar disorder.  Today she appears to be extraordinarily manic.  I suspect that her major illness is Bipolar disease and Mania.”  I think if anyone was waiting four and a half hours for their exams, anyone would be manic.  I do not have Bipolar disease but if you want to say I do, I’ll go with that.

What followed were charts that said things like I do not need a cane.  I told the doctor that I cannot use a cane because of the hypermobility and pain in my wrists, and that I need to use a scooter or wheelchair when faced with a supermarket, mall, zoo, etc.  But all it said was that I did not use a cane.

The doctor also said that I would be frequently able to climb ladders or scaffolds, although he never asked me if I could.  That I would do well with unprotected heights, humidity and wetness, dust, odors, fumes and pulmonary irritants, extreme cold (I have Raynaud’s Disease), and vibrations.  He said that I was able to shop, travel without assistance, prepare a simple meal, and care for my personal hygiene, even though I told him I could not.

The other doctor only proved me to be more crazy than I actually was so I am not going to take issue with any lies that are favorable to me in my case.

How does this doctor sleep at night??  How does he even have a medical license??  How can he lie, every single second of his job, how can he violate his Hippocratic Oath on a daily basis?

I now see why 86% of New Jerseyans are turned down for Social Security Disability on a first time application.  I now see how people whom I know needing lung transplants, in comas, having morphine pumps in their backs, are turned down all over this country every single day.

I have now lived it.  I have been called a liar, even though I did not do anything that day except tell the truth.

I was devastated.  It was one of those sedate myself, see you tomorrow days.  This stuff is not for the faint of heart of or mind!

The next day I called my lawyer and yelled and screamed and he took it from me and then he told me that I should also write a rebuttal letter to the judge, along with the one he had already sent her.

Here are some excerpts from my letter to the judge:

“…Upon receiving these reports I must respectfully say that I am more surprised not by what is there, but by what is not there.

…As part of my examination, a tuning fork was touched to my body.  When he did that I jumped and started to scream and cry, ‘You hurt me!  You hurt me!’  I observed a look of shock and horror upon his face.  ‘I am so sorry!’, he said.  ‘This part of the examination is not supposed to hurt!  Please stop crying, I am sorry!’

You may therefore imagine my surprise that despite the tuning fork examination producing grossly abnormal results…my neurological examination was “Normal” with a major part of the results being completely overlooked.

During another part of my examination the doctor examined my flexibility and range of motion.  I told him, ‘I am hypermobile’…and the doctor said to me that I was indeed so hypermobile that I ‘could work in a circus!’

To not note that this exchange took place and to dispute my residual functional capacity when my treating doctors agree that I can barely walk or use my hands due to my hypermobility is again, to me, surprising.”

I also wrote that although the doctor noted that there was no swelling anywhere, that he never even gave me a Rheumatological examination and that my bandages that I wore on my wrists and knees were never even removed.  

“…I received my Lupus diagnosis in August of 2008…the blood work states that I do indeed have Systemic Lupus Erythematosus by the indication of a positive ANA.  It also named my Lupus pattern and titer, all indicating that I was positive for the disease.  This was included in both my records and the doctors’ records when I first applied for disability in October of 2009 and can be provided again to you if requested.

…I respectfully ask that you take into account MY report of my physical examinations, as well as the years of testimony given to you by my four treating physicians, one who has known me for over ten years, when you consider the medical reports given to you by the doctors who are employed by the Social Security Administration.  Most sincerely…”

My lawyer sent my letter to the judge last week and we are now waiting.

Who do you believe?  Am I so crazy that I hallucinated those exchanges with the doctor?  Is that what the doctor will say?

What do you think?

 

 

 

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | 12 Comments

Wondering About My Son’s Future

Posted on September 21, 2011 by

(I read Carry Yourself Back to Me by Deborah Reed as a member of the From Left to Write Book club.  I was given a free copy of this book.  This post was inspired by the book.)

The thing I like most about our book club is that you do not write a review of the book, but must write a post about what the book makes you think about.  As soon as Annie Walsh’s brother, Calder, was introduced, within the first dozen pages or so, I had my inspiration.  I caught on right away that something was not “right” with Calder, as the author and Annie noted his tics, and that they had started again.

Tourette’s Syndrome.  My son has had it since he was two and a half years old.  Yes, you read that right, two and a half.  There is a family history of mental illness, including OCD. Males are affected three to four times more often than females.  And after extensive trauma in his life and being bullied by his former friend in daycare (yes, bullied), my son was a trussed up target for Tourette’s.

I’ll never forget the first time I saw it.  Tyler kept blinking his eyes, hyper-blinking.  I thought at first “allergies”, but he had no other symptoms.  We then took him to an opthamologist who prounounced his vision better than most toddlers his age.  We were baffled.

But then we began to notice sniffing, throat clearing, heavy breathing and yawning.  I called the pediatric nurse a couple of times in a panic only to be told if my son was having trouble breathing he would be “laying like a wet towel on the couch.”  Tyler was not only NOT sitting around, in fact, the blinking, sniffing, coughing, etc. seemed to get worse when he was active.

Finally at three-years-old, a Pediatric Neurologist diagnosed my child with Tourette’s, along with Obsessive Compulsive Disorder.  I did not want to believe it; just because my three-year-old put together a puzzle in a certain way, he had OCD??  Maybe he was just smart!

But sure enough, the OCD has also manifested itself in my son.

I think in my child’s five years of life, the worst time with the Tourette’s was when he started coughing uncontrollably when we would try to put him in his “big boy” bed.  Tyler was so scared about being left alone in a room (and STILL is) that he would begin to cough.  “I can’t stop coughing,” he would tell me, and I would try to rub his back to soothe his anxiety. Finally, after this going on for a couple of weeks and him not being able to sleep, every night to midnight or one ‘o clock, I took him to bed with me, where, being with his Mommy, he was finally able to stop tic-ing and rest peacefully.

Between sleeping in a sleeping bag by my bed and being in bed with me, Tyler spent almost two years in my room, with Grant forced to sleep on the couch.

A lot of mothers said it was the wrong thing to do, but I say until you live it, until you helplessly watch your child cough so much he can hardly breathe, then you can tell ME what I should do.

And now he has come to the age where he realizes that sleeping with Mommy is not the right thing to do.  He is still too scared and anxious to sleep alone in his own room and so he has graduated to the love seat, where Grant still sleeps on the couch.  Someday I believe I WILL have my husband back!

With Tyler’s form of Tourette’s, he is mostly able to hold back his tics during the school day. As soon as Grant would pick him up from pre-school he would start to tic.  Like many children with Tourette’s, he feels comfortable enough with Grant and I to “let loose”.  He has only been in kindergarten for a few weeks but even through pre-school, the Tourette’s never affected him “academically”.

At Tyler’s age, it is common for the tics to wax and wane, and for many months now, except for a few weeks when he was very nervous about starting kindergarten, we have noticed few tics.  It is indeed possible that he does not have true Tourette’s; that this is just developmental, and that he could stop tic-ing altogether.

But I can’t help wondering…will he be able to make something of himself like Calder was able to in Carry Yourself Back to Me, or will his Tourette’s lead him to trouble, like it also does with Calder?  I worry about him being teased in school.  I have heard all of the great success stories of kids who had Tourette’s and grew up to be extremely successful and then I have heard the stories of kids who fall in to drugs, get in to trouble with the law, and wind up living with their parents in their adult years, unable to even get a job.

As a parent, all I can do is to do my best to educate myself, to observe, and give Tyler the help he needs.  At this time Grant and I are looking for a child psychologist for him.

And I can love him…

and…

Wait.

Myths About Tourette’s Syndrome                                                                                                             

 

 

 

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , | 11 Comments

Tuesdays With Tyler: Birthday With Pictures!

Posted on September 20, 2011 by

Tyler’s fifth birthday (and LAST birthday extravaganza!) was this Saturday and a good time was had by all.  I was so scared that I would not get through it.  The day before, my fever was 100 degrees before I stopped it with a fever reducer.  I was having my period which makes all of my illnesses, especially the hypermobility problem, twice as bad.  I prayed to God and asked my friends, including some of you, probably, for prayers, good thoughts and Spoons.  I mostly just wanted Tyler to enjoy his party without him having to worry about me.

On Saturday I felt okay.  My joints were feeling very unsteady and so I bandaged my ankles, knees and wrists.  I was self-conscious about the weight that I have gained and looking like a mummy but it’s not about me, is it?

Tyler only knew four of the kids, the rest were the kids of my friends, new and old.  I loved watching Tyler having fun but I also enjoyed catching up with two of my friends whom I have known since junior high school and high school, and getting to know my new friends better. Tyler also has made some close friends and I have become friends with their moms as well. Seeing my weight gain and my bandages, my Invisible Illnesses becoming Visible, I think some of the people who did not fully understand before finally “got it”.

I was really proud of Grant.  I know how hard it was for him to even be there and not only was he there, he was the only adult to go through the jungle gym with the kids…FOUR times! (I thought I might have to call the E.R.)   Honey, I love you so much!

The highlight for all was that, can you believe it, Spider-Man came to TYLER’S party?!  I told Tyler that Spider-Man was webbing his way from New York to our township in New Jersey. When Spider-Man came out Tyler shouted, “He came!  I knew he would come!”  I was so happy that I was able to make my child feel so special, the way he deserves to feel.

The only downside of the party was when Tyler fell from his birthday seat during pizza time, biting his lip.  He ran to me, exhausted, crying, and hurting.  As he sat on my lap with an ice pack, and I rocked and comforted him, he said to me, “I don’t care about all of this stuff any more.  I just want to go home and open my presents.”

Oh, well.

Into everyone’s life some tears must fall or some bad times must happen, or else how are we to know joy and happiness when it comes?

 

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | Tagged , , , , , , , , , , , , | 2 Comments

Planning Ahead With SmartTalk and the State Theatre of New Brunswick!

Posted on September 19, 2011 by

(I am working with SmartTalk in exchange for the opportunity to see these speakers at no cost to me, and for promotional opportunities for my blog.  I am not being monetarily compensated.)

I am pleased to announce that I have partnered with SmartTalk Women and the State Theatre in New Brunswick, NJ to bring you an extraordinary opportunity.

SmartTalk has been bringing women together to experience the power of the spoken word since 1991, and has grown into the one of the most powerful and entertaining live events in the United States.  SmartTalk believes that women can be inspired by the heart and voice of other remarkable women with the the hope that the end results leave women thinking of, participating in and experiencing the most connected conversations of their lives.  For more information and the answers to frequently asked questions click here.

Show performances start on January 14, 2012 in Cincinnati, OH.  The series will also be in Des Moines, Iowa, The Twin Cities, Wilmington, Delaware and in Tampa Bay, Florida, and of course, The State Theatre of New Brunswick, NJ.

The scheduled speakers at The State Theatre will be:

Dr. Jane Goodall, on January 16th, 2012.

Many people know of Dr. Goodall’s work with chimpanzees.  Besides her extensive body of work, Dame Goodall is serious about the current threats facing the environment and will explain to you her reasons for hope in these complex times, encouraging everyone to do their part to make a positive difference.

Donna Brazile, on February 28, 2012:

A veteran Democratic political strategist, Donna Brazile’s other accomplishments include author, syndicated columnist, television political commentator, and former chair of the DNC’s Voting Rights Institute.  Besides being a native of New Orleans, Ms. Brazile’s passion is encouraging young people to vote; to work within the system and to strengthen it, and to inspire them to run for public office.

Frances Mayes, on March 27, 2012:

Author of the bestselling book, Under the Tuscan Sun, Frances Mayes is also a professor, poet, and a seasoned Italian cook.  Now she devotes herself to full-time writing and her new furniture and accessory lines.  She is the founder of the Tuscan Sun Film Festival in Italy, and has a new cookbook to be released in 2012.

Cathy Rigby, on April 18, 2012:

Born premature and growing up with an alcoholic father, Cathy Rigby was able to overcome these obstacles and in 1968 earned the highest U.S. gymnastic scores.  At 15, Ms. Rigby became anorexic and bulimic and nearly died.  After retiring from gymnastics she married, gave birth to two sons, and became a commentator for ABC Sports.  After divorcing her husband and seeking medical intervention, Rigby reinvented herself as a successful actress and singer.  Her story will inspire you to soar higher than you have ever thought was possible!

Sigourney Weaver, on May 22, 2012:

Academy Award nominated actress Sigourney Weaver has captivated audiences as one of the most esteemed actresses on stage and screen, with her breakout movie being the unforgettable science fiction/horror film, Alien.  She has recently starred in Avatar, Paul, and You Again.  Meet Ms. Weaver as you have never seen her before!

If you are not in the New Jersey area but would like to attend these talks in the other cities that I have mentioned, please visit the SmartTalk Women Tickets page.  Also check out their Bloggers area for discounts and chances to win tickets.

 

For those of you who are in New Jersey, tickets go on sale starting October 18th for those who do not have a subscription.  You can visit The State Theatre, call 732-246-7469, or purchase them online at the SmartTalk Women Tickets site.

 

And for YOUR chance to either win tickets, or receive information on ticket discounts to the State Theatre venue, keep following Mama Sick!

 

 

 

 

 

 

 

Share and Enjoy: These icons link to social bookmarking sites where readers can share and discover new web pages.
  • Digg
  • StumbleUpon
  • Facebook
  • TwitThis
Posted in Uncategorized | 3 Comments