Nomi the Lonely

i love this picture it reminds me of when i was a little girl and i would sit on the shore of a lake we used to visit in my big sweaters and almost bigger bows.

When you’re struck with a chronic illness it’s not uncommon to feel a great sense of loneliness. It’s there in that great big package your body gives you along with the aches, nausea and confusing fatigue. It comes even when your family and friends surround you and often have friends around. It’s just something you have to deal with.

I’ve felt loneliness before I got sick, everyone does at some point in their life. However the years coming up to it I was too busy to get lonely I was too many quests and had too many adventures to stop and think.

But as of late my thinking has been too much, the late nights when I’m still awake and it seems the rest of the world is sleeping it’s hard not to feel lonely.

I ask myself why, because I’ve got a great family and many friends and lots of support. But I think the reason I have the loneliness is because there’s no one else who knows exactly what it feels like to go through this. It’s not a “oh sad, lets feel sorry for her.” sort of thing, it’s just matter of fact. No one does, and quite honestly I thank God. Ours is an illness that no one sees, and it’s not like cancer where people have more awareness and understanding. Plus lets face it. Dysautonomia is just weird. Especially when you’re a paradoxical mess like I am.

But I’ve decided I’m thankful for these lonely spouts.

They’ve allowed me to really understand myself more and gain the most out of my experience. I’ve always had a hold of who I am. Now days fitting in is the exact opposite of what I want to do, and I love myself for it. My very conceited cousin was telling me how hot he was the other day and I thought to myself how odd our family was because we’re all so confident. But I realize the reason why we are is that we’ve been faced with a lot of challenges. Not necessarily more then the next family but for some reason a lot of us have come out with an extreme sense of self.

Now don’t get me wrong, my cousin’s a little twit but I’m proud at the same time that even though he’s in the scary high school stage he can hold his own.

I’ve embraced the lonely and turned it into a time of meditation, further understanding of myself, my progression and trying to psyche my body into healing itself.

I’m not going to lie, my spiritual ambitions are not what they used to be. I think it comes from long absences from church because of my bad days, but I think I’ve also realized how amazing it is that I can still develop testimony by studding, reflecting, and searching for answers at home by myself. Don’t get me wrong the church community is greatly needed in ones development because we learn and lean on each other. However I’m not entirely disappointed in my self progression with studding on my own.

I guess it’s one of those “if no one was watching what would you be doing?” sort of things. I’m proud of what that answer is.

But one of the most important things I’ve learned within the last weeks, it’s okay to cry. Not for an hour, not for days at a time, but sometimes it’s okay to let loose. I’ve never been one to cry over emotions, especially self pity. But I broke down the other day to my best friends and I didn’t even know why, it was over something extremely stupid.

But it was because I just finally broke. Yeah, it sucks that I’m not able to do the things I was able to do, and that the doctors go back and forth and I miss working, I miss playing soccer, and having as much energy as I used to when playing with my babies. And I feel a guilt that I’m not there for my friends and family like I used to be.

So I cry. Just for a min. Then I remind myself that I am one strong woman. Freakishly strong in fact, and that I’m going to get through this, because when you have trials God helps give you the strength to handle it. I will find a way to defy all the odds, and day by day I will get better. Even if I don’t get better physically I will get better mentally. And I remind myself I’m not ordinary, I’ve never felt ordinary. And unordinary people do extraordinary things.

Brittany Murphy, Dysautonomia (Pots syndrome), Her Brother

Actress Britney Murphy went into cardiac arrest and died December 20^th 2009. Many speculate that she died of a prescription overdose because of the toxicology reports. Mainly because of the prescriptions found in the home, however I’m not so convinced, the drugs in her system were all over the counter drugs except for one, so she would have only had one prescription. Her Husband who also died from heart failure not long after her death claimed the other prescriptions were for his severe heart condition.

She had a severe case of pneumonia and the drugs found inside he could also just be helping her get over that.

There just isn’t something right about claiming it was an overdose. Her family members are determined to get the word out and spread awareness of what they believe contributed to her death.

Her Grandmother, Aunt, and half brother all suffer from Dysautonomia and P.O.T. syndrome. Although she was never diagnosed they say she displayed many of the same symptoms, including high heart rate, and extreme weight loss in a short period of time. Many claim she had anorexia but others believe it could have just been because her heart was overworked, or maybe a bit of both.

The following is a video of her brother Jeff who has suffered from Dysautonomia for years as he talks about Britney and P.O.T syndrome. The hope is to help spread awareness and open the eyes of medical professionals and the public on the severity of the disease.

Dissing Dysautonomia

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Ms. Nomi (what I call my Dysautonomia) has been visiting me a lot lately. The doctors have been tapered me off my beta-blockers because I’m paradoxical and they want to experiment with different meds before I hit the Mayo Clinic. So I’ve taken up some hobbies since I can’t do the usual fighting crime, turning trix and acting as britney spears body double.

I’ve become quite the little crafter and for my fellow P.O.T heads I’ll tell ya, get your craft on man!

My bestie and I hit JoAnn’s the other day for some sales. We looked online for coupons and found our share of deals. Take time before you go out and clip some coupons, we saved about twenty bucks. I found some adorable bird houses that just needed to be sanded and painted they started from 1.00 and went up to about 25.00.

I also got some things to start needle pointing. There’s something charming about dirty sayings in needle work.

It’s been such good therapy for my fingers. My hands aren’t what they used to be. I don’t know why but just typing is hard some days, and forget about piano playing. But I swear the needle work, knitting, and pushing myself to play the guitar and piano has really helped me.

I also make sure I walk at least 10,000 steps per-day. I try to up it each week, but of course on my bad weeks during that gifted ‘special’ time each month I’m lucky to get half that.

My heart rate is more messed up then Farrah Fawcett on letterman. I went running the other day and of course tracked my heart rate closely. It stayed between 65bpm and 120bpm. The faster I ran the slower it got. I know, once again, paradoxical. So I’ve discovered that if I just walk on a steady incline it stays at the highest beats per min. Who would of thought. The good part of having such a messed up heart rate is on my good days I can run forever. It’s exciting and disgustingly fun! I bet I could do the Iron Man…that is as long as I had floaties on during the swimming portion in case lost movement in my right side. And I would need to find a way to bike without actually balancing on a thin piece of metal in case I passed out and fell off. And I probably shouldn’t run because after drowning from swimming and passing out from biking I bet I would look like a heroin addict on the side of the road. (Nomi survivors are probably the only ones who would really understand that reference.)

Anyways, I know it’s hard my friends, but keep on keeping on, you’re never given anything you can’t handle, and if you view your life as just a pathetic joke, it makes it a lot more entertaining.

Ride on man, ride on.

"Doctor there's no way I can be pregnant, gestation freaks me out."

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Today I had the privilege to go visit my ObGyn and as I was lying there and feeling like I was on a crate of dynamite while riding a horse I began to have a delightful discussion with mydoctor. Why is it that when something new and weird shows up the doctors always resort to asking if I could be preggers? Even the ones who KNOW how much birth control I’m on, including the ultimate beauty of abstinence. That’s right people I’m abstinent, by choice! I know who’d a thought that there were still virgins in this world? Well I could show you a few people who qualify. Yes, we all live in bomb shelters and have never been exposed to the outside world. Beside even if I wasn't a nun I still would do everything in my power not to get pregnant, gestation freaks me out.

So Dear Doctors,

Just because I’m weak all the time, have extremely low blood pressure, and vomit every morning at the exact same time and after every meal; it does NOT mean I’m pregnant.

Please figure out what’s wrong, and believe me when I say, there’s no way in hell it’s possible!

Sincerely, your high paying patient.

On a more happy note I received my Mayo Clinic paper work in the mail today. It’s been a long fight, many tests, even more doctor’s visits, a couple of surgeries but I finally made it. I’m on my way! And even though I know that there’s no cure, I still believe a miracle can happen that will help treat me so I can have a better quality of life and longer life span. Wootie! Wootie!

And to top it off Jimmy Eat World’s on letterman tonight! So minus the lame brain doctor It’s been a freaking awesome day and I’m one happy girl!!

The Art of Dying

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Growing up I always wondered what it would be like to die. I dunno I guess I thought it would be much more exciting and dramatic or something then it really is. But then again the several times I died I only died for seconds to minutes so who’s to say I actually got the whole big shebang. I sure hope not. Maybe I just got the commercial preview and not the actual cinematic production.
I had several near death experiences, they were wonderful and i'll hold some near and dear to my heart but it wasn't like a big cinematic event. I was expecting to be Robin Williams in "What dreams may Come" But it was simple.I’ve always thought trumpets should be blazing, thousands of people I have no memory of and ancestors from centuries past should be there to greet me with flowers and heavenly gifts. There should be a party in my honor and for a good hour or so I should be the center of attention and queen of the party; tiara wearing and all.I don’t think that’s the case anymore, in fact I don’t think it’s even close. I bet when you die, you experience the illusion of light brought to you by the great nerves going off like fireworks in your brain. Then you sit up out of your body, look back, think to yourself ‘gosh darn it, I sure was a sexy beast’ then pow! You’re in heaven.A couple key players would be there to greet you but it’s no big tah-do, then you’re immediately put to work.I’ve never understood why people think once someone dies, the dead go back to their own funeral to watch. I personally have already experienced my life, I don’t need an inflated optimistic summary of it. I think I’d fall asleep and drool all over my wings. That is assuming that I already earned them.I bet I have. Earned my wings I mean. I’m a pretty fantastic girl I think. Or at least that’s what a pompous self-righteous dogmatist told me yesterday. He said I had an over exaggerated view of myself as far as my saintly-hood goes. I may think I’m sexy but I do not think I’m a saint. I don’t share my Oreo’s enough to be a saint. But just to be safe I asked my shrink and she agreed, I am not a pompous narcissist.
I really hope God let’s me come back and haunt people on my breaks. I think I’d hide a lot of shoes. I like the idea of messing with the thermostat so that people sweat once they see their electric bill. Isn’t that ironic, sweating while looking at the bill for excessive air conditioning? Gosh I’m funny. Or just really tired.I hope heavens cold. I hate the heat, but maybe that’s just because my P.O.T.S. makes it so I’m an over worked farmer. By the way, holla at my peeps over there in the fields, you deserve way more then you’re getting paid! Keep bringing on my tomatoes, I’d die without them.
That would really suck if that’s how I died after all. Here I am spending all my money on hospital bills and over priced medication and then I die from shortage of tomatoes. Just my luck. I knew I’d die from something stupid.My dream way of dying would be slamming into a large gas tanker after a long high speed chase. Preferably with a psychotic super spy, not the police… I’m terrified of having a record. The huge explosion and thrill of the chase would make the whole dying thing much more entertaining and less of a bummer.But alas I’ll probably die because of tomatoes. Tragic, I was such a lovely person....I really shouldn't write these when i'm this exhausted.

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The Insanity Plea

When you are going through the hell of figuring out what the heck is happening to your body it’s a steady mission; a quest per say of which it is easy to find optimism by looking at it as an adventure. Of course it’s a crappy adventure but none the less you can trick yourself into thinking that with every new test, every new diagnosis you are just educating yourself. Educating on how the medical profession works, education on peoples body language (that may sound weird but I can now read doctors like an open book) and education in yourself.

I now am much more aware of chinks in my armor. I’m still fabulous but now that I’m more aware of myself it’s easier to admit when I’m wrong...which of course is rare, and when I should change something.

When all this started I was little miss independent. I hated getting help from others, because help was for the weak. I worked like crazy, studied like crazy, exercised like crazy, and partied crazy (well at least for my cities standards.) I only dated for the fun of it and only had one really big relationship out of high school that had absolutely no strings attached. It was much more fun moving from man to man, date to date, party to party, group of friends to group of friends. The only constant in my life was my family and an old friend Jess that came up to school with me from my home town.

Sickness humbles you; you have to admit you’re just as vulnerable as the Roman Empire. I had my ten year plan; I wouldn’t have ever seen myself here.

When you go through the hell of diagnosis you go through all the stages of grief over and over again every time the doctors change their mind or get new results from different tests.

Then you have other outside forces pulling you, like friends and families. I lost a lot of friends when I got sick. There was even one that complained that I wasn’t paying enough attention to her and her problems. Others just don’t keep up because they don’t understand what’s going on or they’re were just bummed I turned from being a crazy fun loving gal to one on a couch most of days of the week completely passed out. I’ve even had a little drama with my extended family because of it. they simply don’t understand the disease. At first this bugged me but now I’m glad. The friends I have now are few, but really very loyal. I take the relationships with the sexy man friends more seriously and I’m still a work in progress but them taking care of me doesn’t make me uncomfortable anymore. I know my family will come around, my bond with my mother is stronger then the wall of China, and the respect and love my father shows me would make any daughters heart melt.

Then when you  FINALLY get the actual final diagnosis and everything is pretty much sign, sealed, and engraved you have to go through the steps of grieving all over again.

I’ve finally found a way to deal with this.

I plea insanity.

Simple as that. I just don’t care anymore, I’m now a complete ditz, my thoughts are never completely formed and the flap between my brain and mouth that filters what I say, doesn’t really exist. At least I won’t go to hell now for lying.

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So I plead insanity, I dance in the streets, bounce in puddles, have long conversations with strangers, wear what I want to wear no matter how insane it looks, cry for no reason, take bigger risks, and many other fun things I won’t say just incase it will incriminate me later.

And you know what?

It’s AWESOME being insane!!!

The Compromise

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I had another little chat with my nero yesterday, i'm so tired of the back and forth but I just keep reminding myself, it's not their fault they are just "practicing" medicine after all.

We rediscussed the school option and I explained the importance to me, that i'm not like most people and that I don't "stress" out over school except during exam season. We came to the compromise that I'll take online classes, something that never involves me having to go on campus, nothing that leaves me unsupervised in a testing center, and nothing difficult. They want me to start out with like a film class or art 101.

So I was able to take a DEEP breath, a chill pill, and realized I really should take it one step at a time. I'm so used to my five and ten year plans that I never thought i'd ever be making a one month or one week plan.

Oh well that's my new life, i'm just ecstatic that i'm going to be able to take an online class! woohoo!!!!

Today I Discovered I am a Masochist.

I have a HUGE weakness. Here in this part of the country we have a BEAUTIFUL place, a MAGICAL place, a PERFECT place we like to call...THE PIZZA FACTORY.

The addiction started in high school it was our little hang out spot then it didn't get any better when I became friends with the owners son. Oh dear oh dear. It was bad.

When I moved away I was sadden by the thought of departing from that perfect pasta (yes it's a pizza factory that made pasta) and heavenly, succulent, bread sticks. If man and food were allowd to marry I would marry those bread sticks.

So with tears in my eyes I parted ways and never looked back.

But then the other day I was looking for a place to eat with my auntie C and as we were driving up and down the hills throughout our beautiful city I saw the clouds part, angels started singing and there it was...a Pizza Factory glistening in the sun calling out my name. I almost fainted with excitement and had to put pressure on my chest because my heart started pounding and jumping out of control.

Because of it my aunt and I have gone there not once but three times in the last week and a half.

Now many of you may be thinking big deal, that sounds wonderful. but the thing is, I think i'm gluten intolerant or something. When I eat too much bread I not only spend the next three days in the bathroom puking and other things, but I also end up having episode after episode.

So it was NO surprise when I had a big ol' doosy of an event last night. It was one of the most terrible events I've had for a couple of months. Every sensory nerve in my body was going nuts. I couldn't touch anything without stings of uncomfortable spikes pressed through my skin. I can't explain it any other way then it feels the same way for your skin as it feels for your ears to hear finger nails on the chalk board. Clothes off, I was on my tip toes with my arms stretched out and my legs spread so that nothing was touching me. Including the carpet. The only thing that seemed to help was an intensely cold shower and spending a good couple of hours out in the cold. Then the migraine and wiggly limbs came.

and it may all be because of those heavenly bread sticks. (BTW when your obsessively track what you eat and do then compare it to your episodes and events, this will allow you to connect what triggers them.) Oh dear. Yes I know. So last night I swore I would refrain, not allow myself to be weak and never go back. But then my aunt came over and she needed a fix. Oh no, I've made her an addict. She was jonesing bad, and honestly, so was I. My mom gave me that look, you know the mom look. But my cravings were pushing me, chewing at me, my heart gave out and I went. Ordered my usual salad and bread sticks. and now 'I've been going back and forth to the bathroom and I know that by the time the sun is up my brain will be extra foggy and my i'll be fighting off my wiggly limbs.

I must be a masochist. I still want another one.

Dysautonomia Today I'm a Daisy.avi

Thank you Michelle for sharing it. :) []jOaMi

Telling Me what I Can and Can Not Do will Only Make You Look Like an Idiot Later On

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I've been staring at the wall for the past five minutes wonder just how much force I would need to use in order to punch my head through....F=ma

This week has been from Hell, I mean, you might as well send me down and chill with Hades for a while. I was asked by one of the Nero's if I've thought about just ending school all together. I asked him how he'd feel if he just stopped taking showers all together. I mean REALLY? How the hell am I supposed to keep my head up and have hope when my docs are telling me I should just chill at home reading novels about Fabio getting it on with some desperate hooker? And what person in their right mind actually thinks thats a good idea? I thought they meant just for now, but nope he clarified that I can find a good job suitable for my "disability" and that way I can practice on getting better and not "over doing it."

OH the Stupidity.

I'm really sick of the stupid. Maybe that's what I can do, I can figure out a way to end all the stupid. After my doc told me to stop trying so hard to continue my education I went out and bought several books on mathematics and the Quantum Field Theory.

I mean really? Really? Like educating myself is really going to stump my recovery.

No wonder most of the blogs about Dysautonomia and P.O.T.s are filled with horrible hope and a depressing longing for happiness. Doctors are dicks. And apparently it's common for them to strip patients of all hope.

This week as i've said has been hell, I've refrained from posting anything because I kept hoping something good will come of it. That hasn't happened, but I refuse to let this be it with my life. And the rest of the week will NOT be Hell. I've been thinking of everything the docs have said the last week (i've seen three) and I've decided I'm going to do this. I don't know how, but I'm going to do what I want to do and i'm going to excel so well that when someone else is diagnosed with a chronic illness that makes it almost impossible to stand up in the mornings they will know they still have a life worth living.

Pitty really, I feel bad that so many actually feel that a life in bed is all they can live because that's what their doctors make it sound like that's all they can do.

New rule, Doctors aren't allowed to say "we may not be able to do anything else for you." These words are detrimental to a person in my position. We don't need you to find a cure. We don't even need you to find away to make the pain or the events go away. We just need to know that our doctors are trying as hard as they can to find a way for our quality of life to improve. There is ALWAYS something else you can do. ALWAYS.

Just you wait, I WILL fly.

Internet: The Hypochondriacs Bible, or an Excellent Research Tool?

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I learned early on that looking up info on WebMd to figure out a diagnosis for your symptoms is pretty much a death sentence. Doctors can sniff a world away if you are a internet WebMd hypochondriac, the bad part is they also easily confuse those of us who honestly have issues with those who just like to live their lives with a theatrical stick up their butt.

Because of those lovely people the rest of us have to suffer. So I learned very quickly, play stupid, try to ask the right questions and steer away from the computer. Otherwise they'll sniff out the fact that you've been researching on the internet, scoff then refuse to even look that direction as far as the diagnosis.

Generalizing here? Heck yes I am, but after all the doctors i've seen and after all my experiences I think i've earned the right to say a lot of doctors arrogance shows off their ignorance.

A few years ago when my symptoms really started increasing my boss tole me she watched a show called Medical Mysteries. The girl on this one particular episode had all my same symptoms, ended up having Dysautonomia, and my boss referred it back to us to ask the doctors about it.

We made the mistake of telling the doctors where we heard of Dysautonomia and the three doctors we mentioned it to all shot it down.

So you can probably understand why I’ve just been getting my information from the doctors instead of researching it myself.

Today i've decided that's bull crap and I should have the right to take it into my own hands and research however I can. This is an odd illness, and with how chronic it is, I SHOULD be able to study it all I want. I see the reasons why doctors hate internet-itis they have a good point, it's feeding hypochondriacs everywhere.

With all this being said it taught me something important. I am very glad that my doctors had such resistance over researching on my own because now I realize I need to take all the info I do find on the computer with a grain of salt. If I read an article I need to really look at it with an open mind and a critical point of view and don’t let the Hypochondriac part of myself get the best of me.

If you look at the information you find this way critically you will be much more informed then if you were to read article after article and take it as gospel. Medicine is a practice, they will never be completely right and that is why as a Patient you must be patient; and keep an open mind.

I Cant Post a Title because I've Forgotten how to Spell

Yesterday I was told by one of my doctors that I need to put my education on hold even longer, and another doctor second it. Apparently my brain is being ‘over worked’ in their opinion. They say I need to give it a rest and let my body heal before I go back. This will be the fourth year I’ve been on leave from school. Yes, right now I’d be working on my masters if ‘nomi’ didn’t bother me.

For many people this wouldn’t be a really big deal, but it devastated me; almost as much as when they told me I shouldn’t be teaching in a classroom until I get better control over my body. They also told me today to think of it as if I’m just one of those students that take a year off and go to Europe. I almost punched someone. I’ve already taken three years off I think I’ve had a good rest, don’t you?

…Now time to find the upside, because the purpose of this blog is not to whine, but really see what can I make out of all this, how can I kick some Dysautonomia butt? So today after I was pathetic and climbed into my hole and moped for an hour I got bored, so I decided to make one of my lists of things I’ll do instead. Everything I can do with all my beautiful ‘limitations.’ NOTE: I promised I would take a break from my studies, but I’m a nerd through and through even in my deepest darkest parts. SO…I may ‘take a break’ but I bet my definition won’t be congruent to their definition, and frankly I don’t care I’m doing it for my own sanity.

New Activities and Goals

Write children’s books explaining disabilities to a younger audience, I see so many issues with some of the younger kids today, they are so confused about certain disabilities and the misconceptions even among adults is devastating.

Get my craft on. I’ve been inspired by our city’s art festival, and etsy.com. I figure even though being able to sew a straight stitch is as impossible as Heidi Montag going scuba diving without her boobs exploding; the other crafts are most defiantly doable.

Become a fabulous photographer. I’ve decided it’s something I can physically do easily and since one billion people are now buying camera’s and then photo-shopping the crap out of their photo’s to make master pieces why not I be a joiner too? One of my best friends actually has genuine talent. She has no need to try to channel Merlin to make her magic. So I’ll mooch off her knowledge and make her make me the Kodak Queen!

Calm my inner nerd. I will chill out on my studies and research even though I think it’s lamer then the Lord of the Rings trilogy. I’m still going to read the good stuff with real substance because if I was forced to read romance and Oprah’s book club novels my mother would probably end up finding me burning all the books in the back yard as I threw myself in the fire to put me out of my misery.

And last but not least I’ll find my inner chi. My best friends were really in to meditation in High School, and of course I was too ADD and couldn’t care less about calming my inner soul. Calm people make parties a drag. Plus I never understood why you would want to sit for hours on end mimicking the same position a monkey sits in as he eats his banana; especially if you’re not allowed to eat a banana.

However I’ve had a change of heart, an awakening of sorts, and I’m going to put my wiggly limbs to use. I still refuse to chant.

So the past couple life card’s I’ve been dealt really are making me wonder if I’ve got some bad Karma, but that will stop. Not necessarily because the news will get better, but because I refuse to let it define how I live my life. It’s my life, and I’m still going to figure out how to live it MY way! Wish me luck. I’m off to change the world.