Saturday, December 22, 2012

Something Isnt Quite Right

I've noticed over the last few days that I am extremely fatigued & falling asleep just about everywhere I sit for a few minutes. Narcolepsy alert is at an all time high & it seems no matter how much caffeiene I have, it still won't prevent the episode. Along with this, I've also noticed an increase in chest pain, more than usual but not anything I haven't had before. I would say the pain I experience chest wise on a regular basis would have a first time middle aged man running to call 911 due to the extreme discomfort. Its unsettling I agree but if I ran to the hospital every time I experienced this I would honestly spend about 200 days in the hospital being told its nothing, just another ANS heart glitch. Now that being said, my cardiologist gets PISSED when I avoid medical intervention because he knows given my health issues to date, one of these episodes will be the real deal & I might not make it to the hospital at all. So I guess I'm considered a bit of a risk taker just because I won't waste the time of ER personnel to care for me if its going to be another false alarm.

I should explain the false alarm details. My heart is in crisis mode, there is something going on as I feel the pain and discomfort of what most people experience during a real heartattack however, in my situation, my heart can mimic the effects so that my body seriously considers it a heart attack but by the time I receive medical assistance things get better within an hour. My EKG does show some kind of permanent damage from I guess an episode that was perhaps not a false alarm but after a heart catherization, nuclear stress test and echo, nothing could be determined. So I'm back to square one, medical mystery.

My heartburn is BEYOND the worst its EVER been! Holy shit I'd take heart attack symptoms 1000 times over one bad night of reflux! I feel like I churning flames below & I'm constantly nauseous. Nothing like feeling like you want to puke 24/7 but you know what? I keep eating and drinking my diet Dews, status quo because I'm not changing ANYMORE of my lifestyle to accomadate this shit hole syndrome! I've sacraficed too much already so I'm just going to grin & bare it even if it means puking daily.

I've also noticed that I'm withdrawing from people lately. I have my parents here but I find I want to be alone rather than entertain, this is unlike me. Even time with friends I've almost cut everyone out & just chose to isolate myself from most of the people I know. I did some research on this & oddly enough, its natural for people that suffer major illnesses. They don't want to burden people around them or draw attention to what they have by being physically I'll around them so they tend to start closing off relationships. How ironic, the web has answers to everything!

I don't have the answers I want about this syndrome, like its origin in my life and I certainly wouldn't wish it on anyone enemies included! Its a vile bastard that effects way to many internal issues! Complications with every frigging vital function of your life, who can seriously overcome this? I know I can fight it like no other but I'm losing ground and realizing its bigger than I ever gave it credit for.

In closing, I do want to say that I have no regrets that I was the one chosen to have this issue. I'd much prefer its me rather than any of my family or friends, I couldn't watch someone I know & love deal with this although my mom was not quite as fortunate, she has one of the sister syndromes of ANS, Parkinson's and having to help her stand up or at times grab her arm to help her balance herself, that's taking a toll on me. So I'm forcing myself to do more to hide my syndrome from her which is actually causing me to shut down more so then usual. For those of you wondering, yes I've not told my mom how sick I am. She has enough on her plate & like me, stress causes even more issues when an ANS syndrome is present. My father knows & is power of attorney should things go wrong for me. I WONT burden my mom with this, my brothers were hard enough to deal with after I told them. So for now, mums the word for mom. Take care & thanks for reading. Its not the end of the world after all. No I mean it, its 12/22/12 so I'm still here making the Mayans some bullshit speaking mother f'ers! Ciao

Thursday, December 20, 2012

Nights Like These

I've managed to ignore, overlook, perhaps even pretend at times that I'm as normal medically as I've always been until I have a night like this. These are the nights that concern me the most, the nights that I fit the perfect profile of what this syndrome is best known for, taking its victim in their sleep. This is why I hate to even close my eyes, that paranoid element that you try so desperately to keep in the back of your mind but it manages to sneak up and grab you on an evening that seemed to be going so well.

Along with the long list of things that become an issue for people who suffer from Dysautonomia, acid reflux can come & go as it pleases. I stay clear of most things that cause this issue such as spicy foods, heavy concentrated sauces, popcorn, pretzels etc... Tonight however, I had two items that when combined apparently close to the time to which I prepared to go to sleep, it almost became a lethal combination. Could you imagine that eating something so simple as a Butterfinger & some potato chips two hours before you laid down to go to sleep, could cause you to be gasping for breath & awakening to stomach acid burning your entire chest worsening with every cough as you try to clear your airway? I was coughing & gasping so loud that I woke my parents dog up on the other end of the house with this horrible coughing fit. Sad part of it all, the scary part so to speak, wasanother visit from Katie leading me towards a bright light & asking if I was truly ready to crossover. When I asked what it would mean exactly if I crossed over she said I wasn't ready just yet & suggested I head back, this is where the violent gasping for air combined with the worse acid reflux I've ever experienced took place.

Now this is where I'm most confused. I'm sitting straight up in my bed mind you, my entire chest is on fire & it feels like I drank Drano, I'm trying to determine what is a dream verses what seems to be the final destination. I've talked to my friend about this in several conversations prior to this evening, this obviously was not my first time I woke up trying to breath again. My friend is a minister, an Evangelistic healer who travels the world spreading  the word of the bible. We share Christianity but different denominations which doesn't prevent me from seeking his guidance on spiritual matters.

According to his perception of the afterlife, from numerous years of research & I must say, all kidding aside, his knowledge of religion regardless of origination makes you wonder if he was a cowriter of the Bible itself. When I described past visits which included a very clear image of Katie, my first girlfriend who passed due to leukemia, regardless of whether there was dialog or just her presence, this is considered a dream rather than a point of crossover. People that are turned away by loved ones are apparently having dreams that are orchestrated by our minds which hold no signifigance to any known spiritual transportation yet every time its happened to me, I awoke gasping for breath & in some cases feeling as if blood was again rushing through my body almost giving me the illusion of my body warming up from a cold spell so to speak. Its SO HARD to even describe the things I've endured when I wake up this way, its overwhelming sometimes as well as concerning.

The one thing that's never been disputed is the bright light sensation that people have experienced after being brought back to life on operating tables and such. So what am I to think when I'm heading towards a light, intense beyond anything I've seen in a conscious state, how do I explain Katie's presence as I headed towards this light? Dream, not a dream, crossover, not a crossover? I'm so lost right now on what I'm supposed to think that you begin to wonder if you are losing your marbles. All I can say with 100% pure accuracy is my chest is on fire and my lungs feel like they have sunburn, that's fact! Stomach acid heading where air oxygen is intended is without a doubt one of the most uncomfortable feelings ever. Not being able to catch your breath is awkward enough especially when accompanied with coughing acid, i felt like I was drowning which is not a comfortable feeling whatsoever.

I'm obviously not going back to sleep, there is no way I'm going for round two of this crap. I do need to call him tomorrow to get his input on what I dealt with, dream or not. I honestly at times wish I could give a shit knowing this answer but with the vast history of ANS disorder patients dying in their sleep, I must say I'm intrigued to know some answers. I can't prevent it,(even avoiding Butterfinger & chips) I've had other incidents of waking gasping for breath that were not involving acid reflux, this just happens to be the most unpleasant of ways I've experienced waking up.

I suffer from EXTREME sleep apnea which I have a medical device called a BIPAP. In my case, air is forced not only inward but also on exhale. Between my mind & my airway obstruction when I sleep, even with the necessary equipment I still stop breathing regularly throughout the night. This puts tremendous strain on my heart which causes more blood pressure issues etc... Here is an example of why Dysautonomia is SO DIFFICULT to control & why Drs stay clear of patients effected unless specifically trained for this. Due to the sleep apnea, I also have narcolepsy, which for those who aren't familiar, I'm that guy that falls asleep while sitting down sometimes mid conversation with you & when I awaken again, resume the conversation as if I was alert the whole time. The only problem is, I was asleep & silent for a period of time & you are the one amused & trying to balance peanuts on my forehead until I wake up again. Where was I heading with this? Oh yes, the difficulty of controlling ANS. For the sleep apnea/narcolepsy issues they use amphetamines to keep a person alert. For most patients this is a dose which is usually 30mg daily maximum. My case, took 90-120mg which meant I needed frequent visits to my cardiologist to ensure my heart didn't explode & my blood pressure didn't stroke me out.

Within a year, all recorded on my implanted heart monitor, instead of my heart working extra hard from all the speed, mine was actually doing less & beating at such a slow rate the word "Pacemaker" came into the picture. It wasn't until I reminded dear old doc it couldn't be possible due to the high percentage of speed I took daily, that's when that Dr discharged me to seek the professionals at a university hospital. Wonderful!

As I prepared to leave, her last comment was "you may need to increase your sodium intake to try and regulate your heart naturally". Now this is the same Dr that said I needed to limit or totally remove sodium from my diet to keep my blood pressure normal. Do you see now the complication? So I did increase my sodium, which in fact raised my heart rate to a more reasonable BPM that everyone was happy with HOWEVER now my blood pressure is through the roof. Damned if you do, damned if you don't. I'm the only person I know who can lose weight and actually have worse blood work results then when I'm 50lbs overweight. Another situation my other Drs would just scratch their heads over. A total medical mystery on a daily basis.

I entertain myself sometimes taking blood pressure readings at random in my home. I check it a few times a day. Tonight for giggles and shits I decided to do the NCS/POTS diagnostic so to speak where your BP is checked in a lying position & then rechecked in an upright position. I enhanced this by adding sitting which led me to wonder WTF is my body thinking. Lying down: 144/65 77BPM not bad, no medication whatsoever mind you for BP issues. Immediately stand 155/60 104BPM ( for those of you who may not see the issue, your BP is supposed to go up when your BPM goes up) sitting 168/108 99BPM lie back down 148/70 75BPM sit upright 185/104 91BPM stand 160/80 111BPM. All of these pressures happened within a 5 minute period. Now I think you can relate to why more Drs in my area have gray hair.

What bothers me is the unknown. When you have other terminal diseases they give you a window, you start fading away, make peace with everyone, a lot of cases say goodbye to people prior etc... My case its going to be sudden & unexpected which means a lot of people I'm not going to have the luxury of saying goodbye or for that matter truly finding peace. I met with my priest already for the blessing that as sudden as it may happen, God has my back & all but let's face it, not knowing when or where is so F'ing stressful you couldn't possibly imagine! It would be like the most highly respected psychic in the world telling you that you'll die as a result of getting hit by a bus but never telling you where or when. What do you do, move to Amish community to avoid buses? Frustrating right? Welcome to my world.

In closing I guess what im going to say to have some closure to my current situation, the optimist side of me expects to live until I'm 100+ and see my kids reach all their life goals and expectations. Based on my health & the realist side of my personality, if chosen to leave before my time, please know that my love for my family & friends has always been my biggest priority. Whether we knew each other for years or months, if I spoke to you in ANY capacity along the way, you were always considered a friend from the get go. If I suddenly disappear from Twitter for any length of time, I'd say more than two weeks without ever returning, my destiny was finalized but because of all the support of friends & family near & far I left knowing I made a difference in each persons life & you made a huge difference in mine. It would take me months to include everyone's name so we'll consider my blog entries as my connection to you all as well as my departing thank you for all the support you have all given me should the unthinkable happen to me. God Bless & love you all. Thanks for reading, Ciao.

Tuesday, December 18, 2012

The Little Things

When you are faced with a syndrome that consumes your body and creates symptoms that cause all sorts of illness and pain, its sometimes the little things that help you focus on getting through another day.

When my kids aren't with me, I rely on social networking to keep me company as well as meeting a handful of special people in person. For the short bursts of attention I receive during these interactions, the pain is put on the back burner and I feel like I'm living again. It may not seem like a huge accomplishment but when you have to force yourself to get out of bed on a regular basis you might understand it a bit more.

I never thought I'd like Twitter so when I signed up in 2009 I really didn't see that it would end up being an addiction as well as an avenue to keep close to Twitter friends. Its now one of my favorite ways to communicate with friends near and far.

One thing I have learned above all else, Italians because of our heritage immediately bond and develop long term Twitter bonds. One person in particular that I seem to keep in touch with most lately is an amazing vocalist/musician named "G" or Gaetano. He goes by @g_got_soul on Twitter which isn't entirely a name that defines him, he should be @g_IS_Soul. I come across a lot of amazing vocalists & I'm not an easy judge to please but this guy, WOW, seriously one of the most amazing talents I've met in years. If you can closeyour eyes & listen to an artist as they sing & have them make you FEEL the music, then this is a person who has extreme gift & should never stop putting out this talent for all to hear no matter how long it may take to sign with a great label. Not by any means a comparison but an eexample, Katy Perry was basically laughed out of her first label & told she'd never make it in the industry. Persistence made her a star because the word NO is just not an option when you have passion driving great talent.

I personally want to thank Gaetano for allowing me to be a fan of his music, it brings me to a place of comfort I used to feel 20+ years ago when I actively sang & now that chronic sickness has consumed my life, its the little things that take me on short mental vacations so I can feel alive again. Obviously, if I had the financial means to excel his career, I would not hesitate one second to bring him to that next level. I TRULY believe he's on the edge of success & all those countless years of practice, investment, devotion is about to pay off. I want to witness that happening, its on my Bucket List.

My other Twitter obsession, black women. What is it about beautiful black woman that has peaked my curiosity so much that I basically don't even acknowledge white women anymore? Yes I did fall in love with the most amazing black girl ever that propelled my interest but after having several failed interactions with a few other black women after her I still feel the ultimate draw to them. One of my closest friends now is a married woman I met on Twitter, she's black & adorable & I can't go a day without talking to her. Its not what you would think, I'm not trying to pull off a robbery, I don't play like that but I do adore this young lady & the times we share chatting. She allows me to fully express myself, which is certainly awesome to be able to say ANYTHING & get away with it. I do prefer girls as best friends most of my life so having her now in my life makes me feel comfortable again so to speak. I know I say the craziest shit to you T, but it is all in good fun & my way of venting or should I say purging my inner thoughts? Lol, regardless, we have something amazing going on & I'd like to think I'll live long enough to be able to do a couples vacation with her, her hubby & whoever my Mrs. Right might be moving forward.

Speaking of my Mrs. Right, who will she be? I've met so many amazing women lately & its not like I'm sifting through them waiting to find a winner, I'm still trying to figure out what I have to offer them. Take for instance Ms Kash. Now here is a BEAUTIFUL woman, aspiring model who actually gets paid for it unlike those girls who say they are models & just pay a photographer to film them. She's going back to college for a great career, she's driven to support herself & make her life more & more stable as she goes. Why can't I date a girl like this? She knows I care about her, I've never hid that from her, the only thing I have hidden from her is my health which if she's smart, I'd be the last guy she should be interested in. I can't guarantee her a future if I'm unable to have Drs tell me exactly what I have in store for me. Yes I understand the whole "sudden death syndrome" I get that but give me a date PLEASE! I was told to get my affairs in order, create small goals & if I made it to see my youngest daughter turn 2, I was doing better then they could predict. That was a year & a half ago, still here so now what? I've gotten worse, true, but I'm f**king determined to stick around forever if its up to me. The will to live MUST be stronger the the anticipation of death. Who knows, but Kash, just know that you are the perfect girl for ANYBODY who's willing to step up & treat you with the respect you deserve. I'm so glad I met you & I'm happy no matter where the future may take us later down the road. Im satisfied just knowing you the way I do & if it never goes beyond where we are at now, great friends, then so be it, I'll be here when you need me.

In closing I'd like to say that T was responsible for me doing this blog again. Apparently she went & read some of the previous posts & felt I needed to get back behind the keyboard to put things out there again. Hope you like this one "Sis" its 2am & I'm unable to sleep so I guess this is as good a time as any to blog. Thanks for reading, my next blog might be the story of how I met Dutchess. Its really such a unique story that has actually spark the interest of a movie producer in NJ, someone who has worked with my cousin on a few movies so we shall see. What a legacy that would be & NOTHING would please me more than making Dutchess famous. She meant that much to me. Story for another day, Ciao.