Social Security Woes

Well, in my process of seeking help I applied for Social Security Benefits.  I have enough credits since I have worked most of my life, so I know SS help is there for me, however, I was denied.  My lawyer told me to expect this denial,  In fact, expect not to get it at all, partly because of my age. 

Although the denial should not have bothered me, it did.  My doctor wrote a letter stating he deemed me to be unable to work because of the dibilitating effects Narcolepsy has had on me.  He further stated that he viewed me as disabled.  Since I lost my job, as most of you know, I lost all insurance and income, thus my ability to pay for medication is no longer there. 

Without the medication I am not able to work.  Mainly because my Cataplexy is so invasive, there aren’t any employers who want to take a chance on me since I could hurt myself quite easily.   Unmedicated I can’t work.  I need a job so I can afford meds, I need the meds so I can get a job.  That is what is known as a piss take. 

It is frustrating.  Hopefully I will get the long term disability.  That will give me some income to depend on.  What upsets me is the fact that I have paid taxes, social security through my jobs yet it is not there for me when I need it.  However, people who come here illegally get benefits and help.  Why is that?  If you are an illegal alien why are you not arrested?  The word illegal insinuates that someone broke the law.  So why are they not arrested?  Why are they able to draw money from something that tax payers made possible?  Why am I paying for their aid, but it can not be used to help me?  A citizen versus someone who is not.  The more I think on it, the more it makes me mad.  So here we are, back at square one.  There is always hope though.  Long term disability is still being looked at by my lawyer.  Since he took my case I have to believe that he believes he can win.

In the mean time I am looking for ways to earn money that will allow me to stay home.  I have come up with the idea of mailing letters to area doctors in the hopes that someone would like to have transcriptionist help.  It’s something I can do from home and it would help make ends meet.  The other hope is to get someone interested in my book.  I have sent out a query to one agent.  Now it is about waiting for an answer.  Of course, in the mean time I have found a small press that takes short stories.  They are of the spicey variety, but if I had a shot of getting published, I would go for it.

Even though Social Security let me down, I am not downfor the count.  Hope still reigns.  As long as I have hope I can make it through each day.  With everything that has happened since last summer I am learning that each time you win or lose a battle, you have to immediately go on and find another battle to undertake.  You see, it’s the battles that hope are born from.  Don’t we need all the hope we can get?  I know I do.

Perhaps one day I can look back at all of this and see it as an educational tool that I can share with other people who are facing issues with their Narcolepsy.  We’ll never go the distance in anything if we don’t arm ourselves with wisdom, hope and an unfalling belief in what we are standing for.

Call It A Quirk

Who knows the why’s of Cataplexy triggers.  I have read so many places and been told by my neurologist that emotions provide the trigger for the attacks.  With my attacks, I have to say that emotions do play a major roll in the attacks I have.  A movie with some poignant parts will almost always make my lips droop down and the skin under my eye droop.  If it really gets to me, I may get really shakey and wobbly.  Fortunately, when you watch a movie you’re sitting, so other than some head rolling I don’t stand the chance of kissing the floor with my bum.

Laughter doesn’t get me so much.  It can, but mainly when it’s completely by surprise.  Mom can read me something on the net while I am behind her or sitting near and I can feel the warning signs travel to the surface.  Feeling the beginning of the attack is a good thing.  I can catch it sometimes and keep it from getting out of hand.  The process of doing that is one that uses alot of inner strength.  I have to be totally dialed in to overcome an attack.  Many times the attack wins, but I have to fight it if I can.

However, as time goes on, I acquire different triggers.  One in particular that doesn’t have anything to do with emotions.  I can make toast in the oven and all is well, BUT take tonight.  I made a sheet cake.  Putting the pan in the heated oven was no issue, but opening the oven to check it made me feel shakey.  Opening the oven to take it out sent me into a full body attack.  This happened last week as well and I almost fell over into the open oven door.  It scared me and weirded me out a bit.  As far as I know, the oven doesn’t make me feel anything.  Heat yes, but with small items there is no issue.  But I can’t grip that pan.  My hands will not hold it.  It feels like they are paralized.

Because of this I believe there are many things that can act as triggers that are perhaps unique quirks to individuals who have Cataplexy.  Another example would be today at the unemployment office.  I was called and followed the man helping me.  All is well.  However, when he leads me to the back to fill out some papers I start to feel shakey as I walked past numerous cubicles that were occupied by employees, some with clients.  I sat down and got myself together.  He left me alone and I filled the papers out.  Perhaps 15 minutes to do this.  I got up and walked back to his cubicle as he had asked me to.  

When I got a few feet down the hallway, I felt shakey again.  If I had to tell you how I was feeling I would say I wasn’t feeling anything.  Just in a going through the motions kind of thing.  I almost fell though so I hurried to sit down.  All I could think was, Where did that come from.  It happens randomly when I am in public for no apparent reason.  Since I can’t put it to an emotion I am feeling I call it one of those quirks I have. 

Does it happen to anyone else?  What triggers your Cataplexy?  Anything besides emotions?

Mr. Levi’s

Sleep.  Deep Deep Sleep.  With each breath I take, a dream begins to form in the land of Morpheus.  The clouds melt away and I am 19 again.  I see people from then and it’s as if I just saw them yesterday.  We talk about unknown topics.  I am that girl among them talking and laughing, yet I am also hovering on the edges of their world, like Scrooge in a Christmas Carol watching the past. 

Suddenly I’m in my first apartment.  It’s thundering and lightening.  I am afraid of it and can’t sleep.  Again I’m on the outside looking in, but I’m still that girl whose afraid.   A guy I was friends with shows up.  *Eye Raised*  He knows I am afraid so he came over.  OK, so he is cute, sweet and probably the guy I should have taken seriously rather than the one I did.  Like some deja vu do over that you want to make end better, You know?  Unfortunately the dream doesn’t last long enough to cruise down memory lane with Mr. Levi’s.

I hear something.  It’s here, at home, not in the dream, at leasst I don’t think it is.  I want to wake up because I don’t know if it is something that will harm me.  I can’t move.  I’m probably still asleep and still dreaming  (I preferred the guy coming over SO much more) but I think I am awake and unable to open my eyes, unable to move.  Fear starts to set in now.  It’s bad enough that I can’t open my eyes but I can’t move.  The worst part is whether I am awake or asleep factually is beside the point.  “I” feel awake.

After what seems like forever, I open my eyes.  I feel disoriented. My eyes are searching around in the darkness for an intruder.  Of course there wasn’t one.  Perhaps I’m halfway between awake and sleep  because I go back to sleep.  It’s like I’m immediately shakey.  Again I feel paralized for no reason.  Again I feel myself going back into dreamland, minus the guy I was to blind to see for a good guy 20 years ago.  Why are the best parts gone??  UGH!  Nothing is clear, just murky, almost like strange feelings but no sound or sight. 

The continuing of these weird feelings combined with not being able to move, and the new sensation of feeling shakey, which is probably Cataplexy due to the emotions present, are sending me back and forth between semi awake and semi sleep hell.  It must sound like a bad night of sleep huh? 

I wish it were that easy to dismiss, unfortunately, the terror that came with that night of sleep is more normal than a sweet dreams kinda sleep.  Good nights of rest are far few and in between.  The things I described are part of my Narcolepsy.  There are times I wake up from these dreams and go into a full body Cataplexy attack upon standing. 

The interrupted sleep only mean that when I wake up I am just as tired as I was when I tried to go to sleep.  Several naps in a twenty four hour period are attempts my body makes on its quest for that restful sleep.  My nighttime sleep amounts to naps as I am never asleep for more than 2-4 hours.  4 hours of uninterrupted is bliss!  Of course, dreaming of Mr. Levi’s was nice.  I’d love to dream about him again.

This is Me

We all have good days as well as bad ones, nothing new there. I’m finding that I increasingly have days that are neither good or bad, simply frustrating. For the most part, I take Narcolepsy in stride. The Cataplexy is another ballgame though.

It’s becoming harder instead of easier to convey to people when something triggers an attack. I’m fortunate that I’m learning to notice triggers because it enables me to work out the safest way to hit the ground. Unfortunately, when I feel an attack coming on speaking feels like a skill I don’t have for a few seconds and in those few seconds I am going down. Literally.

It hurts peoples feelings I think, inpart because perhaps they feel responsible for the attack. Maybe it’s because they love me and know there isn’t anything they can do to help the attack end. Is something that has to see itself through. For me, I deal with it all better when afterwards I can talk about it. Explain to whomever, what I think caused it. Go ahead and get it out in the open. Frankly, I hate tip toeing around it because like it or not this is going to be part of me for the rest of my life.

For the most part, when I have attacks, I’m learning to laugh at myself. Please don’t think this sounds disfunctional, but if your skeletal muscles go kaput and you hit the ground, after awhile you have to laugh or else end up depressed. I remember, in another life it seems, when I would trip or fall and the first thing I did was look around to see if anyone saw me. Who doesn’t do that? We all wonder if someone has seen us when we are completely clumsyor you end up with your bum sticking up. I don’t worry about that anymore. Heck, I could care less if someone sees me. Seeing me flat on my face is going to be a way of life now and then, so everyone may as well get use to what I look like ass end up.

The laughter also hides the frustration for me. It’s so hard to be the only person you know who deals with this oddball disorder. The feeling of no one understanding me or being able to relate is hard at times. There are no support groups close by. The closest thing I have to support from fellow Narcoleptics are forums that I have found along the way. It was enough at first, but now it’s beginning to be inadequate.

Today the frustration and need to be around people like me is overwhelming. I want to HEAR someone say, I know exactly what you mean, or thats happened to me so many times. Just to hear those words verbalized would be wonderful. I want someone who has Narcolepsy and has Cataplexy in my life. Not all people who have Narcolepsy have Cataplexy, so that compounds the difficulty in finding people to talk to.

What do I do? I will come here and blog away. Just typing away for a few minutes does help release some of the pent up frustration, so if nothing else comes from this blog, it’s theraputic for me. As always, if there is anyone out there who wants to learn more about Narcolepsy, feel free to get in touch with me. Knowledge is power!

Work and Disability

I’ve always had a job.  I got my first paycheck when I was 12 years old from summer farmwork.  At 15 I added working at a local burger joint to my job list.  During the day in the field and nights taking peoples orders.  Those experiences early in my life are ones I am thankful for.  That and having parents who taught me that if you wanted something you had to work for it.

Time progressed, as did the jobs I had, each one teachinig me invaluable lessons that would last a lifetime.  However, there is one thing I never considered.  What would I do if I couldn’t do the work that paid the bills?  How do people make it from day to say when the disorder they are living with prevents them from performing certain tasks?

My last job, the one I thought i would be at forever gave me an experience I’ve never had in my entire life.  I was terminated.  At first it was with a great amount of shame that I would utter the word terminated.  In fact, I just said I got fired.  Mama explained that termination didn’t mean I was a bad worker, but that I couldn’t do the work I had been hired to do.  Still, I felt like I got fired.

Narcolepsy has been a learning experience.  I’ve learned new terminology besides termination.  I can say several big words that I had never heard of before.  I also know what it’s like to be between a rock and a hard place. 

After having a Cataplexy attack at work, I was sent home.  Later that day I was called and told that I was being put on short term disability.  I was not to come back until the Cataplexy attacks were under control.  Of course, that day I didn’t know it was Cataplexy, I called them spells.  Already I had an appointment with a Neurologist, but the appointment had not come yet. 

In my ignorant mind I figured that after I went to the doctor I’d get a pill and go on my merry way.  Why wouldn’t I think that?  That’s how things went with any other medical issue I had.  You live and learn though.  When I went to the appointment I was scheduled for all types of tests.  They were performed and by the time the results were back, a month had passed.  Although I was getting 70% of my salary, I wasn’t worried, the short term disability would last for up to 6 months and surely I wouldn’t use all of that time.  6 months seemed like a long time.

Well, I got medication.  Expensive medication.  Some of it worked but not all of it.  I was still having Cataplexy attacks.  Time passed and it was December.  Cigna calls.  It’s time to start the long term claim so if you need it, it will already be in the works.  The way they said it, I figured I would get it if I needed it.

I got a letter from my company in February.  My short term expired the end of January, so I was not getting any income.  They informed me that since I wasa not able to do 100% of my job that I would be terminated on the 28th.  My insurance would expire about a week later.  OMG!!  I can’t afford the medication, which totaled over 300 a month WITH insurance.  I sure as heck coudln’t afford it with no income or insurance.

The icing on the cake was disability denying my claim for long term.  Talk about a rock and a hard place.  How can you go get a job when you can’t afford the medication, therefore the Cataplexy attacks are horrible.  Sometimes I have upwards of 6-8 a day in varying forms and degrees.  Yes, since last July my disorder has progressed alot.  Can’t buy the meds so I’m going to have the attacks.  It pretty much rules out work.

Well I have a lawyer and have gotten him all types of papers that he needs and finally today he says he will take my case on.  Of course I am hopeful because he doesn’t get paid if I don’t, so for him to finally take it gives me hope.  BUT, it could take anywhere from three months to a year and a half to get results and even then there is no promise that I will get it.

Options.  Something I am searching for.  I’ve decided to go for food stamps.  Pride is fine but it isn’t paying the bills.  I’m going to go for my unemployment, which I should have done to begin with.  I didn’t because I didn’t want it to interfere with the disability claim.  Unfortunately, the only work I can do is going to limit jobs that I can do.  I can do typing and computer work but I have no certification.  My goal was to get the long term, have a means to pay for meds and my bills and take advantage of job training for displaced people.  The only way I will be able to support myself is going to be get trained in some job or trade so I can be as independant as I can be.

What I need is help in getting there.  Although I am hopeful since my case has been taken, I’ve learned that for each battle you win, there are ten more battles that materialize, therefore I have to start exhausting all options.  I’ve got a home mortgage, I have a life, and most of all I have dreams.

We all have dreams.  I could give up and sell my home, move in with my parents and just let life pass me by.  It seems that is what Cigna wants me to do.  They don’t care if I lose it all.  So “I” have to care.  I’ve won each battle I’ve been faced with so far.  More keep appearing but so many people are praying for me, I know whatever is for me, will be mine.  I just have to go out there and get it. 

If you think there were alot of “I”’s in this entry, there had to be.  This journey is all about me and what I have to do.  All I need is a cheering section and people to have the common belief that I can do it!  I frimly believe that regardless of what happens, as long as I believe in me and have hope, things are going to be ok.  Perhaps not what I envisioned, but I can be ok!!

If you’re going through a bad time, you can be ok too!!

Two Seconds of Thoughts Before I Fall

Have Cataplexy (C)?  If so, you’ve probably gone to the floor in a muscleless blob at some point.  When I first started falling due to the C attacks it seemed like if there was a bad way to fall, that was the way I was heading.  Perhaps it is wisdom that comes with time or God actually gives you an additional sense to protect yourself, but as time and the attacks have progressed, my ability to save myself from pain has grown.  I like to akin it to how your remaining instincts take over if you go blind or cannot hear.

When the attack happens, its sudden.  However, many times there is that quiver I feel before it happens, no matter how slight it is.  Two seconds is about what I have before I am going to go splat. Those two seconds have become invaluable to me.  Although it doesn’t work all of the time, more often than not I am able to figure out in those two seconds how to fall.  If there is something soft, I will lean in that direction.  It sounds easy but it’s not because my body doesn’t allow me normal control.  It is a fight to say the least because my involuntary reactions shut down and I have to force myself.

If you’ve ever fallen from a C attack, then you know that feeling you get between standing and the floor.  If you are standing on a concrete floor and have fallen enough, the first thing you think of is how hard that darn floor is going to be.  Survival instincts seem to take over and for that I’m thankful.  While I can’t stop the fall many times and I never stop the attack, I am finding that I do have a bit of control over the landing.  My knees are thankful for that!

So what makes me fall?  More on that in my next post!  Take care

What’s Wrong With Her??

That may be what people whisper under their breath if they catch me at the right moment.  Outwordly I resemble someone having a seizure, although somewhat shorter in length.  Well, it’s not a seizure, it’s my Cataplexy.  See I am a Narcoleptic and I live with some quirks that most people don’t have to deal with. 

Narcolepsy is a chronic neurological disorder caused by the brain’s inability to regulate sleep-wake cycles normally.  1 in 2,000 Americans are affected.  Not all, but many Narcoleptics also have buddy that comes along for the ride.  Cataplexy, which is the sudden loss of muscle tone that leads to feelings of weakness and a loss of voluntary muscle control.

While the definitions above are mostly textbook, nothing about Narcolepsy can fit into a nice neat package.  What makes one person have a Cataplexy attack may not bother someone else.  Some people struggle with the sleep aspect while others not so much.

For me, the Catpalexy is more pronounced than the need to sleep.  That isn’t to say I don’t have sleep issues because I do, but it goes back to what I said before, you can not make this fit into a package where it’s one size fits all. 

Initially, my emotions, such as laughter, anger and sadness triggered Cataplexy for me.  The attacks didn’t happen every day.  They were sporatic at best, but in 8 months time I have gotten to the point where I have attacks every day, and many days I have several in a 24 hour period.  What is frustrating is that my emotions don’t seem to be the only thing that triggers the onset of an attack.  Taking something out of the oven almost always sends my Cataplexy over the edge.  That is a new feature I didn’t have say a month ago but now baking is somewhat impossible if not dangerous.

Day to day life for people with Narcolepsy can be quite frustrating.  I have time where I can go to sleep in a matter of seconds.  The need to sleep is so overwhelming that once I close my eyes it’s over with.   It’s ever changing though.  People with Narcolepsy normally face countless medication changes before a liveable combination of drugs is acheived.  What makes this harder is the fact that the medications made exclusively for the treatment for Narcolepy are not vast.

Medications that are developed for other needs are the most effective in treating some of the symptoms.  Currently I don’t take my meds because I lost my insurance, but when I did, I was taking medication for ADHD, depression,and sleeping.  Sadly, none of my medication was perfect in it’s ability to help me, although it did mask some issues.  You may think I was depressed or had ADHD but the answer to that is no.

Depression medication is widely used in the treatment of Narcolepsy patients with Cataplexy.  Since there is no medication to stop the Cat attacks, depression medication is used in an effort to level things out.  You see, when I take anti depressants things that make me cry, mad, upset, and laugh don’t happen as often.  I am more or less on an emotional autopilot.  After awhile on the anti depressant meds I do start to feel all of the emotions I’ve been holding in and the need for release become more demanding.  A bit like a bottle that is shaken up and under alot of pressure.  Sooner or later I’m gonna  blow.

Ritalin is an interesting little tablet for me.  While it calms hyper activity for ADHD patiens, for me it has the opposite result.  I was taking  it with my Provigil.  Together they work  as a stimulant.  The Ritalin gets me high and I am filled with a nervous type of energy.  Unfortunately, once the results wear off I have to take another because you come down from the high so fast that sleep hits fast.  Why take it?  Well, increments of Provigil haven’t helped and are VERY expensive. 

Through this experience I am learning that with or without medication, Narcolepsy is going to alter my life.  Perhaps that is the most important lesson or adjustment that I have to grasp.  Even though it changes the dynamics of parts of my life, it doesn’t have to turn my life into something I don’t like. 

There are so many things I have to tell you.  I want to talk to you about other side effects, how people perceive you, and learning how to be compassionate.  The list really goes on and on, but that’s the purpose of this blog.  If one person who doesn’t know what Narcoelpsy is about reads this, then I’ve helped promote a bit of awareness. 

I encourage anyone to make comments and ask questions.  I am more than happy to help and learn.