And, the Lucky Disease is … Dysautonomia!!!

That’s right, I even took a picture of what my doctor wrote down for me.  I have Acquired Idiopathic Dysautonomia with Polyneuropathy, and I couldn’t be happier. How cool is it that my doctor even misspelled a word?

When I heard him, I was like, “What the fuck is that?”  Acquired Idiopathic means they don’t know exactly how I got it, but it could have been due to:

• Autoimmune disease, such as Guillian Barre (I may have this, but both my doctor and I don’t want to do a spinal tap.  I told him not unless I’m dying!)
• Epstein Barr Virus (Which I have.)
• Heavy Metal Poisoning (Which I may have been exposed to growing up in ‘the Heights.)

And Polyneuropathy means multiple nerve damage, which I have per one nasty EMG.  Good times!

So, this just leaves Dysautonomia, pronounce “Dis-Auto-No-Mia.”  It’s complicated and can kill me, but I am just so happy to know that I am not crazy.  Because I KNEW something was very wrong with me.  It took many doctors, thousands of dollars worth of tests, and the determination of one nutty bitch to get it done.

So, here is what this crazy ass disease is all about.  Before I begin, let me say this:  There is barely anything out there on the web on it, one version of it is listed on the rare disease database, and I have found very few bloggers who talk about it, let alone the fact that there was only one book in my public library that even talks about it and even then it is a two in one book. So I’m going to write a long post, for those who are out there and wonder what the hell is going on?

Dysautonomia is a disorder of the autonomic nervous system (ANS) function.  ANS controls the unconscious bodily functions, such as:

• Breathing
• Heart rate
• Gastrointestinal
• Muscles
• Blood Pressure
• Urinary
• Bowels
• Muscles
• Metabolic
• Endocrine

In easier terms, I have a delayed, inappropriate, and/or exaggerated response of my nervous system to stimuli that are either internal or external.  Researchers have found people with my disease have excessive amounts of Adrenaline, and we are also very sensitive to it.

My symptoms, and the symptoms of this disease are:

• Excessive fatigue.  I feel so tired that I literally lay in bed as much as possible.  Nights and weekends I’m done for the count.  Even at work I have been known to lay on the couch during my lunch hour.  I also have Fibromyalgia.
• Light-headedness/Dizziness/Vertigo.    I have been nauseated daily since 2005.  It’s not constant, but it comes and goes every day.  And I have been diagnosed with Vertigo.  I feel dizzy often, and when it happens out in public or while driving I get really scared.
• Syncope.  I had fainting spells in high school.  And a few times in college, now that I have been thinking about it.  I passed out quite a few times, but I just thought it was from being semi starved.  Not by choice, but from crazy mom and being poor and on welfare.  Recently, I passed out this summer, and have been increasingly feeling more faint this winter.
• Anxiety/Panic. Strangely enough, I have read that going into a hot tub/sauna gives you a delayed anxiety attack.  I had a few in the mid-90s, and this was when I went to a hot tub/sauna nightly.  This was the reason I ran away to Vegas, and then ran back.  (A story for another time.)  I barely get them, but from time to time I will wake up in a panic, thinking something horrible.  I control them with behavior techniques rather than meds.  Works for me.
• Rapid or slow heart rate.  I have Bradycardia, (Heart rate slow, under 60) and an extra beat in my heart.
• Headaches.  I have migraines, and cluster headaches and tension headaches.  My migraines have gotten better with Relpax and the fact that I removed my endometrium, thus cutting back on periods. I get these really weird headaches in the back of my head.  I actually prefer a migraine to a headache.  At least I have medicine that works for the migraines.
• Pallor.  From time to time the nice older ladies at my work tell me I look pale.
• Malaise.  Shit, everything hurts and I always feel like bloody hell.
• Fatigue.  My number one symptom.  If I could feel refreshed for one day in my life (Not since 2003.) I would sell my soul, maybe.
• Mental Confusion.  This is the worst.  I do everything from buying the same gifts twice to calling a door a window to just plain misspelling words.  I’ve revised this post four times in ten minutes.  Keep finding mistakes.  I had to quit graduate school because I can’t read my notes.
• Facial Flushing.  I have this often.  Plus, I have Roceasea too, which is an autoimmune disease of the skin.
• Constipation or Diarrhea or Irritable Bowl Syndrome (IBS).  Lets not go there.
• GERD/Acid Reflux.  Yep, got that too.  Yucky.
• Visual Disturbances.  Haven’t been to the eye doctor in three years.  I have seen black floaters since 2005.  And my eyes unfocus from time to time.  Once I saw something that can only be described as an acid trip.  Freaked me out.
• Urinary problems.  I have to pee like every 40 minutes.  Not fun.  Once in Europe I had to hold it for four hours and was crying like a baby.  The fear of peeing your pants is horrifying.  I was referred to a top specialist in Michigan and he couldn’t find anything wrong inside my bladder.  Thank god I never have to have a Cystoscopy again.  OMG those are HORRIBLE.
• Orthostatic Hypotension.  My blood pressure fluctuates from 100/30 to 60/42 to 70/50.  When I got diagnosed my doctor took it and I told him it would be high, because I was stressed from having my car break down on the way to my appointment.  It was 100/70.  Normal is 120/80.
• Numbness.  My hand and feet go numb all the time, for years now.  It freaks me out and hurts.
• Nerve Pain.  Yep, I get burning and stabbing pains all over.
• Trouble Breathing.  I have Asthma, and get chronic Bronchitis and have had Pneumonia twice.  (Once was in Paris, on my honeymoon.  I was trapped in a hotel room without books and the Paris Hilton jail release scandal for four days.  My Pulmonologist has been doing tests and has found my right lung is functioning at 75%.
• Chest pains.  I have horrible pain, which has sent me to the emergency room.  Daily since 1999.  Mostly mild, but tonight its at a 7.  I have to ignore it and its very hard.  Sometimes it is in my right breast or radiates all the way to my back.
• Severe Cough.  When I asked my son “What do you see me do all the time he responded “Well, you cough a lot.“  We were cracking up.  I cough and cough and get no relief.  I have to constantly tell my co-workers who forget “No, I’m not coming down with anything.”
• Sleep disorders.  I have been diagnosed with Insomnia and Sleep Hypopnea (Where your breathing slows down.)  I hate sleeping pills, because they make me more tired, and my mouth tastes like metal.
• Endocrine disorders.  I have Hashimoto’s Thyroiditis, my second autoimmune disease.  Finally taking Synthroid after four years from when I was first diagnosed.  I feel a little better, and have caught myself smiling at work for no reason.  So I know its working.  Thank god!
• Lady issues.  Not a technical term, but I have everything from a double uterus to heavy periods, ovarian cysts and endometrial polps.  and, even though it wasn’t supposed to, my endometrium that was ablated (Burned out) has grown back within a year and two months.  I do not want to get a hysterectomy, but I can’t have all this and periods again.
• Thermal irregularities.  I’m always heat intolerant, and get really cold hands and feet.  The book I was reading says that your temperature should be 98.6.  Mine was low, 97.4.

When I told my medical doctor about my diagnosis, he drew a blank, gladly accepted the literature I had found on the web, and told me he hadn’t heard of the disease I have in over 40 years, since medical school.  He was AMAZED that my neurologist caught it, and said how it really fit everything I was suffering from!

So, there is no cure, and not much can be done to treat the symptoms.  I have been prescribed thigh high compression tights,

which take ten minutes to put on with special gloves and make me pee, and Midodrine,

which will raise my blood pressure.  It can put me into cardiac arrest, but my cardiologist says I can try it.  I’m scared to.

The outlook?  I may have other diseases that go hand in hand, like Sjogren’s Syndrome, (Which my neurologist thinks I have, and my Rheumatologist said he wasn’t sure.) Parkinson’s disease, Guillian Barre, or Mitral Valve Prolapse Syndrome.  Actually, I have many of the weird symptoms of the MVPS, like being tall and lanky, long fingers, Scoliosis, and micromastia, which, swear to god, is “smaller than usual breasts, unlike the rest of your family members.”  My mom is bigger than a DD.  I think she is EEE.  In high school, I was voted third smallest boobs.  Before getting fat, I was flatter that Gwen Steffani before her hush-hush boob job.  Oh, and two of my heart valves have mitral regurgitation, include the mitral valve, which my father and his father both had replaced in their early fifties.  Who knows?

According to the National Institute of Heath, people with chronic Dysautonomia generally have poor long-term prognosis.  Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest.

By the way, Happy Rare Disease Day!

I have found these two websites to be helpful:

http://www.dinet.org

http://www.ndrf.org/

Thank you if you read this all the way through.  If anyone has more info, please comment or email me … or if you suffer from it yourself.

Ghetto Girl

Lost – The Life and Death of Jeremy Bentham

LOST totally kicked ass tonight!  I am still having chest pains just thinking about everything we learned tonight.  First, I have learned that this episode was supposed to originally air before 316, but the producers thought flipping the episodes would be much more interesting.  I am so glad they did that!

Can I just say this first?  Ben is one evil, conniving, and mysterious man.  I’m hoping the very last episode of LOST is going to be all about Ben.  Because all I really need to know is just who in the hell is this person?

Tonight we meet a few new friends, Caesar and Ilana, who were on Ajira Airlines Flight 316 from LA to Guam with Ben and Frank Lapidis and almost all of The Oceanic 6.  They’ve crashed on the island, and the show begins with both of them searching an abandoned Dharma bunker, where Caesar hides a gun that he found from Ilana.  Now, I’m about 90% sure she was the officer who had Sayid in handcuffs on the plane.  And I also think Charles Widmore had something to do with them getting onto that flight.  Makes sense right?  Hmmm.  Then we learn that Locke is alive, on the island, and was standing in the water in his death suit, found by the new group of Losties.  And that Frank and Sun survived the crash, and took off in one of the boats left behind from Danielle and her french gang.  So, where the heck is Sayid?

Lost, as always, has great one liners, and here are a few good ones from the first five minutes of the show:

“Nobody remebers you being on the plane.”

“This suit was the suit they were going to bury me in.”

“I remember dying.”

I love how Ilana just walked away from John like he was nuts.  Good times!

So, we flash back to John showing up in Tunisha, with a compound fracture and strangely on film via video camera, and that this is how he was rescued.  Charles Widmore and Matthew Abaddon are there to welcome him and help heal John.  Mr. Widemore tells Locke who its nice to see him again, and reminds him that they met over 30 years ago when he was just 17 … and for John, that was 4 days ago.  That was so damn cool.

More good quotes:

“I haven’t tried to kill you.”

“He needs Linus removed so it can be your time to lead.”

We learn (As I suspected) that Widmore was the leader of The Others, except they weren’t The Others but rather his people, and he was exiled by Ben, just as he assumed Locke had been exiled by Ben.  Has Locke been manipulated to leave, or was Richard telling the truth?  its getting crazy mulling it all over.  What I found simply fascinating is that Widmore said there was a war coming, and that the wrong side will win if John isn’t back there.  So, who is in the war, and who is the wrong side.  Will the original Losties join Dharma and fight The Others?  Will the original Losties join the new Losties and fight Dharma or The Others?  Or will The Losties join The Others and fight Dharma?  The time line is screwed up, so history is changing on the island … remember we see Jin in the Dharma van … so if Ben gases the island, does this mean our Losties will die with Dharma?  Because this is what I think … THE WAR IS THE ORIGINAL WAR BETWEEN DHARMA AND THE OTHERS …. and now how is everything going to end?  I’m thinking perhaps Ben will now help Dharma survive along with the original Losties and kill The Others in an effort to outsmart Charles Widmore.  What do YOU think is going to happen?

Long story short, once Locke heals enough, Widmore sends Abaddon with Locke to try and get the Oceanic 6 back to the island.  Locke won’t speak to Abaddon, and they go one there way, visiting most of the 6 and Walt in all over.  As always, John is a failure on Earth, and can’t convince any of them to go back.  He doesn’t seek out Sun because Jin makes him promise not to.  and Walt is a grown boy who he realizes has been through way too much to come back.  And I love how Abaddon reminds John who he was the one who told him to go on his walkabout, because he is the one who shows people how to get to where they are supposed to be, and Locke refuses to acknowledge this, because that means he has to admit that he was once paralyzed.

I love how everyone was putting Locke down.  For instance:

“Is it because you have no where else you can go?”

“You didn’t make it?”

Look how far you’ve come.”

“Maybe you are just a lonely old man who crashed on an island.”

Here is when we start learning about what happened during those three years The Oceanic 6 were away from the island.

1. Sayid found and married the love of his life, only to have lost her nine months later when she was murdered.  You can bet Ben had something to do with it, and this is how he manipulated Sayid for two years, by having him kill of Widmore’s men by saying Widmore was behind the killing of Sayids wife.  Brilliant!
2. Widmore was having everyone followed, so this is why Abaddon was at the Santa Rosa Mental Institute to get Hurley.
3. Hurley is seeing the dead because he just does.  This is why he thinks Locke is dead, because he soon will be.  Hurley is a hyper sensitive, as is Walt, and that is why both came to the island in the first place.  Because they island needed them.
4. Kate is in love with Sawyer … this is why she asked John if he was ever in love when he asked her didn’t she care what happened to everyone left behind.  She thinks she should be with Jack, but in the end, she’s going to be with Sawyer, because he is her soul mate.
5. Jack becomes a drug addict and reckless plane hopper because Locke figured out that he ws Christian Shephard’s son.  And Jack, a man of science wonders if he can believe Locke … is his dad really on that island, and more important, how the hell is his dad alive on the island.

I also beleive that Helen Norwood, Locke’s lady, is not dead.  She would have come to John’s funeral, don’t you think?  That grave was a fake, and of course Ben was there to kill Abaddon, who had to be killed off because of his new show Fringe.   John survives a car crash as he tries to flee Abaddon’s murder scene.

We see Locke at his wit’s end, tying to hang himself in a cheap motel room.  He writes out the letter to Jack.  Ben slams through the door in time to save Locke, who utters his most shameful secret:

“There is no helping me … I’m a failure.”

Ben talks him out of killing himself, by telling him he convinced Jack to go back to the island, because Jack bought a round trip plane ticket to Sydney.  And John tells him how Jin is alive, and shows him the wedding band.  But once he mentions Eloise Hawking, Ben strangles him … killing him a second time.  Now, even though they are off the island … is this how Locke lives?  Because maybe Ben can’t really kill anyone for good?  Hmmm … what do you think?

We see Ben tell John’s dead body as he is cleaning up the murder scene and faking John’s suicide “I’ll Miss You John, I really will,” then swipe Jin’s ring and go off on his merry way.

Caesar and Locke speak back on the island, where we learn Caesar saw Hurley disappear before the plane crashed … and he shows Locke the hospital they have set up … and who else is there, other than Ben.  But he looks the same as when he had just had his ass kicked, so I know he is faking until Locke shows up.  I love it!

Wanna know who the real Jeremy Bentham was?  An English Utilitarian Philosopher and Social Reformer.  Like our John Locke, he was a child prodigy.   Don’t forget John knew all about Smokey and drew this picture as a child in foster care.  Remember how Charles Widmore told him HIS PARENTS had a sense of humor and named him after an english philosopher?  I thought John’s young mother gave him up because she wasn’t married … So, was all of that a lie?

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Just a quicky … vacations and illnesses and publicists

Hello blog friends and foes!

I’m working on two huge posts for this week and trying to plan a vacation for my husband’s birthday.  Plus living life, working full time, grocery shopping and watch my tv shows.  Shit, I even missed Americal Idol last night.  Went to bed at 9pm.  And getting physical therapy a few nights a week.   Plus dealing with an exhaustion that is getting so bad I think I slept like 29 hours Friday and Saturnday night.  I feel like I am missing out on so much fun stuff to write about and reading my friend’s blogs and finding new blog friends.  I miss keeping up with the Kate Gosselin chatter on here.  Always puts a smile on my face.

Right now, after slamming a can of soup for lunch (It can be done, but its gonna hurt later) I have dashed over to my local library to write this.  As I’m typing, again my long lost possible serial killer in training brother is sitting behind me and has no idea that I’m here.  He lives over 60 miles away from me, yet comes to the library near my work to undoubtedly stalk his victims.  My BFF the Big A suggests I take a picture of him … and I forgot my camera today.  Damn, I assure you, its a funny situation that happens about once a week. 

So, on to vacation stuff.  I want to fun a plan trip for me and the hubby over Memorial Day weekend.  5 day trip.  I have been to about 40 states, he’s been to about 15 or so.  Where should we go?  I’m pulling for San Francisco, as I have only been there once.  Anyone live or know what non-traditional things we can do there?  Any historical info … help me win him over … Texas is a possibility as well.  But how damn hot does it get there in May?  Which is the best city to visit?  Or Oregon?  I’d love your help.

Illnesses – Yes, multiple.  I’m sick of all of them, and the many doctors I have.  Last week I was diagnosed with something weird, rare and scary that I’m posting on Friday or Saturday.  There isn’t much info out there … But I am realyl happy as hell to finally have my answer. 

Publicists – a few publicists have contacted me to promote their clients shows.  I wonder if there are any savy bloggers out there who can give me advice about this.  I’m not going to write about a show just because someone sends me an email … but then again should I?  I have been writing about the things I do enjoy watching.  Also, has anyone ever tried to go to an event as a member of the press for their blog?  My god I’d love to do that.  Plus I have a great digital camera and I’m a decent photographer.  Please share some tips or email me.  I’d be eternally grateful.  I’d love to be ablt to write full time rather than work a 9-5 job.

Lastly, I am thinking of doing a “Readers Questions” sort of post.  I’ve done tons of different meme’s and quite possible have written everything there is to know about me, but if you all want to post questions here for me to answer … I’ll do it.  Just not things about where I work, what I do, or my name.  I think everything else is up for grabs.

Academy Awards Hot Mess and Best Dressed List

Forget about the Oscars … tomorrow all we are going to talk about is who wore what on the red carpet …

Here are my winners of my Hot Mess and Best Dressed awards … and a few kooks thrown in to laugh about.

(Here I am in my finest Angelina Jolie costume a few years back … pre-Brangelina)

My Favorite Hot Mess Ladies:

Angelina Jolie, you got the cut right, but the color all wrong.  I’d love to see you in a striking green or blue gown.

Jessica Biel, your black purse and shoes look hideous with this sack of a dress, but your still hot.  You should have posed with your ass tonight.

Kate Winslet, you are talented and beautiful, but this cut doesn’t look right on you …

Miley Cyrus, just what the hell are you wearing?  This was the first dress you saw and you picked it?  Yikes!

Amy Adams … I’m not enchanted.  The hair and necklace don’t work with the dress.  Black stripes and chunky beads clash.

Beyonce, I can’t handle this.  You look like a piece of furniture rather than a young hot thing.

Amanda Seyfried, you are wearing the same dress I wore to my senior homecoming dress, but in red.  Mama Mia!

Penelope Cruz, you may have won an Oscar tonight, but you lost on my list.  This 60 year old dress is nothing but fugly!

Sophia Loren – All i can say is nice rack.  that doily of a dress you have on is a fright.

Vaness Hudgens – Loose the earrings and flowers and you’ll look a lot better on the red carpet.

Here are my Best Dressed:

Taraji Henson – I LOVE THIS DRESS!  I don’t know who you are, but you looked fantastic tonight!

Marisa Tomei – Not only does your dress work, but your Botex looks very realistic!  You go girl!!!

Alica Keys – I never cared for you personally, but you looked great tonight.

Natalie Portman, you always are a little doll.  I have loved you since the movie Beautiful Girls.  I wish I could shrink you down and carry you in my pocket.  And, I forgive your acting in Star Wars.

Frieda Pinto … this color is fantastic on you … girls, learn your lesson, wear the color and you get put on my best dressed list.

Heidi Klum – You make an attempt and bring it to the red carpet.  You go girl!

Sarah Jessica Parker – I’m soory your personal life is a mess … (Could Matthew Broderick have looked more miserable?) but at least you always have fun clothes in your closet!

Queen Latifah – You overcome the challenge of wearing a dress over a size six very well.  You go girl!!!

Anne Hathoway – Its young and fun, like you.  Good choice.  And I love that you know how to pose to hide your size six ass.

And finally, my WHAT THE FUCK picks:

Mickey Rourke -  A grown man wears a suit and does not wear a lock of their dead dog to the oscars.  If you win tonight, I will just about puke.  You are a joke to the red carpet.  I can not believe you are even the same person from Wild At Heart.

Briget Fonda – Did you really think it was a good idea to wear a dress from Fashion Bug?

Tilda Swinton – Um, words can’t describe how bad you looked tonight.  Dear lord no one should match a top to their hair color.

Phoebe Cates – After seeing you in this gown, I no longer feel bad about wearing fleece pajamas all weekend, because in my heart I feel I look cuter than you did tonight.

Melissa Leo – Who are you, and whose bridal party did you miss standing up in tonight?

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Michigan Film Industry Hits a Snag

Last year Governor Grandholm signed the Michigan Film Incentive, officially called the Film Production Credit, which is a refundable tax credit of up to 42% of the production company’s expenditures (depending upon type) that are incurred in producing a film or other media entertainment project in Michigan.

This film incentive was supposed to create more jobs in Michigan by giving filmmakers huge tax breaks and luring them Michigan.  But, as time rolls on, I keep hearing about more scams to Michigan actors.  For instance, there are tons of offers on craigslist for film jobs, and most are just for unpaid “experience” only.  Even David Spade filmed a movie here last summer, and per the add on craigslist the extras for the film would not be paid for their work, rather they had a chance to win “prizes” which were to be given out on set.  And today, the below email was forward to me from a friend who worked on a another movie in Michigan that managed to stiff all these Michigan people out of their paychecks.

“First, we would like to offer you our most heart felt apologies regarding the untimely payment on High School vouchers.

We have communicated with many of you on an individual basis, and  many of you might have pieces of information.  In January, we were told delays in payment were due to the holidays.  Upon pursuing this matter further, we were told that there were some financial concerns but we need not worry as a wire transfer was pending.  We were told there was a wire transfer pending for about 2 weeks.  We then connected with one of the producers who apologized profusely for this unfortunate situation, but monies were on the way.  PLease know, that we trusted each piece of information that we received.  WE have been in contact with the producer almost daily for the past three weeks.  The money is in hand, and ready to go, however, to complicate this situation even further, the contract with the payroll company had expired.  Now, the story seems to be that we are waiting for the payroll company and the producers of High School to renegotiate a new contract to facilitate payment to extras as well as to the remaining crew members yet to be paid.”

I thinks it is a damn shame that the people of Michigan are getting scammed opportunists and even by some film makers.  Sure, extra work may not be skilled labor, but anyone willing to stand on set for fifteen hours chearing, dancing, or fighting are entitled to their minimum wage check.  I also have noticed that many of the craigslists adds for production assistants or actors have been reported as fraudulent.  Even today I saw several positions listed for no pay.  Tell me, how is this helping out Michigan’s ecconomy?  It pisses me off!

Good news is that they are finally going to build several film studios here in the D, and I hope to land a job at one of them. Perhaps when these legit agencies move in Detroiters stand a better chance at getting paid for the work they do.  Until then, shame on all of you scammers out there giving the film industry a bad name!!!