I find that one of the things I miss most since my divorce is my medical insurance. I had an amazing coverage with awesome doctors & now, its like starting all over. My insurance ran out in March 2012 so for almost a year now I have been gambling on my health something I certainly don't condone but am guilty of doing. When you have an ANS disorder, its essential to see a doctor every five weeks or so in order to see the path the syndrome is taking. Constant medication change such as dosage and or the medication itself are the only way to ensure some quality of life overall.
With prescriptions that exceeded $1200.00 a month, I opted to roll the dice & see if I could find other ways to treat this on my own without medical intervention. Admittedly, I did well for awhile with the help of the Dutchess however, as with the medication, being off medication turned up same results, the syndrome would evolve and change to where nothing I could do would help anymore.
So now after some very complex changes in my health, I'm forces back into the doctors office, a new group of doctors & perhaps see if my gambling on my health was beneficial or created yet another group of irreversible issues that could end up causing me medical failure in the future. Now I do know for fact, my chest pain issue that surfaced like 15 weeks ago was worse than any other time I had chest pains. I had never had that severe of an issue, and unlike my past issues, this one stayed aggressive for three days before letting up. It was after this that I began needing more sleep & my body always seemed fatigued. It was bad enough I chose to chew aspirin rather than go to ER like a normal person. Having had more false alarms then I could count, I just felt this was another drill my body was running so I chose to ignore the signs. According to previous EKG's, doctors still feel my bizarre EKG pattern is a result of a mild heart attack yet they are skeptical to proceed with a third catherization. Perhaps the results of a current EKG may have them singing another tune.
My kidney issues are getting worse without a doubt. Having to pass upwards of 8 stones by last count, I can honestly say this pain I have daily truly sucks! Any woman that comments "you don't know pain until you deliver a child" I can say with pinpoint accuracy "bitch, its you who doesn't know pain until you pass 5mm stone out your pee hole"! I'd gladly take child birth over kidney pain all damn day long!
The blood pressure issues......what a mess that is. Medicated or not its out of control. Not sure what they'll do with that one but I can say it will be the hardest to control. I have BP readings that would scare any nurse or doctor but should I stand or lay down I can change my BP so drastically it creates that "duh" moment for the doctor because they just don't know what to do. I do get really sick when its extremely high and I fall asleep constantly when its too low. It causes a constant amount of chest pain that for the rookie, they'd be in the hospital asap thinking this was a heart attack. Been there done that. Id like to think I know myself better than any doctor, I just hope I don't prove myself wrong by leaving my house in a black zip lock. Its gambling I know!
So Saturday morning, I get to meet the new doctor/doctors and hopefully be able to bring them up to speed promptly so I can get to the source of my current ailments that are being relentless at the moment.
In closing I'd like to say that my intentions are to be around forever BUT as a realist, I've begun to do things on the Bucket List I refused to create prior. Things change and along with change comes reality. I know I'm a ticking time bomb, I get that SO I intend to be the most prepared future corpse that's ever passed on! I'm even considering WIFI and surround sound in the coffin! They won't be calling me a stiff that's for sure, I'll be rocking even in the after life! Thanks for reading, it makes my efforts of writing crap at 215am something of meaning. Now it may be time to sleep! Ciao
Wednesday, January 9, 2013
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
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.
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.
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.
Tuesday, April 17, 2012
The Positive People
Its been a long time since I've sat down and blogged. I was going to make a point of doing it daily, like a journal but finding the time to sit down at the desktop isnt always an option. (I hate the keyboards on portable computers and my tablet touchscreen keyboard is a pain in the ass, this is why I chose desktop). So then I wanted to make an effort once a week, well as you can see, that didnt happen either. As a matter of fact, once bi-weekly, monthly or bi-monthly didnt work either so now its been months of silence and I feel compelled to write today so here I am.
Alot has happened since my last entry. I signed my final divorce papers three days after Christmas 2011 and went before the Judge to final it very early 2012 so I am officially divorced. This hasnt been an easy transition for the kids at all and I try daily to make everything about them. Their mom, well shes always made the divorce about her which I can't control that, having already introduced a new boyfriend to them even before we signed the final papers, again poor judgment. The divorce was what she wanted so she got exactly that & in the end, I've had time to regroup and realize just how badly she consumed my life with negativity even when the marriage was new.
So that being said, I took on a path of meeting new people, POSITIVE people that dont have time to see the negative in everything but always find the positive instead. Its refreshing to hear about someone who has suffered their entire life growing up and rather than point fingers and blame, they are constantly striving to overcome and move forward. One extreme example of exactly this type of positivity happens to be The Dutchess. (I chose to keep her real name private due to her up and coming R&B breakout). When I met her, even before I could see her face from across the room, I was in love. It was that classic case of "you'll know when you meet them" and that couldnt be more true. Everytime I looked into her eyes, it was like I was seeing her for the first time all over again. She is the most amazing person I've ever met hands down.
Her life was filled with negative roadblocks which quite honestly, I was moved to tears a few times by how hard she had it as a child growing up but what I loved the most was how she told all the stories with a smile on her face and said how that experience made her move to the next level of positive movement. It gave me a feeling inside that I just can't explain but made me realize there wasnt anything I wouldnt do to help this girl or be there for her as she climbs to success in the music industry. Her love for family, the closeness to her mom is by far something any person would envy. I was humbled to be in her presence sometimes just listening to how much her family struggled yet their love and devotion towards each other kept things always positive. Very inspirational girl who will always be one of the most amazing people I've ever met and for sure the FIRST GIRL that I ever fell in love with as an adult. Ti Amo, Dutchess
This brings me to where I feel I want this blog to go, aiming towards the positive people that just make life that much better when you are around them whether it be in person or via social networks. I've had the pleasure of meeting a very large network of amazing Italian people via reality TV. These are individuals that exist in any REAL Italian neighborhood and we can associate that we know someone just like any one of them but overall, we feel like they are now "FAMILY" because of how appreciative they are for fan support.
@carfellamikeyD aka Mike DeLucia and his beautiful wife Nanci are constantly updating fans of where they are, who they met and ALWAYS interact with fans which makes them feel as though you've known them all your life. As it turns out, although the Italian population is massive on the east coast especially, its not uncommon to know someone that knows someone that knows Mike so in the end you know them by association as well as by who they are on TV. His crew Tommie & Mario, although dont engage as much with the fans on social networks, you have a feel that they are aces in person and any friend of Mikey D is a friend of mine. #carfellas
@GiovanniPaoloNY @BIGCHIPmamasboy @PrettyboyPeteD @anthonymamasboy @bxmamasboys having just met all of the crew on Monday nights, I'm already impressed with how they all have allowed each one of us, the fans, to become involved in their lives at home. They interact with everyone on the social networks and are extremely appreciative of the support they receive. Yet another group of Italian people who never forget where they come from & know who their friends are. The Italian culture can be misunderstood sometimes so a show such as #mamasboysofthebronx can appear to the average WASP that these guys are "using" their moms and should move out. Well what you see on TV is an exaggerated example of what looks to be somewhat odd but what you dont see is the off camera, everyday life of these individuals (and many more you dont know) who will do anything for their family, the world revolves around their moms, and the close unity of friends & family that truly defines each one of these guys who will always have the utmost respect for anyone who respects them back. In the true Italian culture, the Italian son can do no wrong & is worshiped by their moms and in return the true dynamics of family values are learned that above all else, we never forget where we truly came from, the person who gave us life in the first place.
I'm fortunate to have also met, through the above named individuals one of the most positive people I think this world has ever known. @Stucatz Big Vin has the most amazing, uplifting words of the day so to speak that just makes you feel that there are no obsticles in life that can't be overcome. We need more people like this around each one of us so that it helps us realize that no matter what is going on around us daily, there is always something positive to be found if we look hard enough. Thats an amazing way to look at life if you really sitdown and understand it. I've always been optimistic, mostly positive, so I appreciate when there is someone who lives, breathes positive energy and makes everyone around them feel the passion for being the same way.
When the doctors told me they were unsure I'd make it to see my youngest daughter turn 2, I didnt curl up in a little ball and demand "why me"? I was determined to prove them wrong and having received this news during a very negative divorce, I still maintained the most positive demeanor that to this day, most people around me dont even know I'm having medical issues. Its all about how you channel your energy and make negative in your life turn towards a positive direction. I saw my little girl turn 2, that was November 2011 and I'm sitting in front of a computer telling you all about it in April 2012 so you can see for yourself what positive energy has to offer anyone willing to engage in it daily. Yes its true that what I have has no known cure, and yes its a fatal syndrome which can take me anyday, anytime but you know what, its going to have to come at me with gloves on because I am fighting this shit right to the grave my friends. I set goals to achieve and I'm moving forward day to day with positive energy and positive people. I want to thank you personally Vinny, I read alot of things but your words have extreme impact for me and its confirmation that my positive outlook on life even with negative anchors attached, its the good I see instead of the bad. You've justified that by what you write and share with each of us in your posts. Grazie!
In closing i'd like to say that you always need to be proud of who you are and where your family came from. Regardless of the ethnicity, you always put your best foot forward and show the world that a positive outlook will overcome any and all negative anchors that we all have to deal with daily. Strive forward in life never forgetting where you came from, use the power of family to achieve the highest goals imaginable and live to make a difference in not only your childrens lives but all those you come in contact with as you go about your daily activities. Thanks for reading and make sure you follow the lives of some truly great people on TV such as #mobwives #carfellas #mamasboysofthebronx etc... Ciao all!
Alot has happened since my last entry. I signed my final divorce papers three days after Christmas 2011 and went before the Judge to final it very early 2012 so I am officially divorced. This hasnt been an easy transition for the kids at all and I try daily to make everything about them. Their mom, well shes always made the divorce about her which I can't control that, having already introduced a new boyfriend to them even before we signed the final papers, again poor judgment. The divorce was what she wanted so she got exactly that & in the end, I've had time to regroup and realize just how badly she consumed my life with negativity even when the marriage was new.
So that being said, I took on a path of meeting new people, POSITIVE people that dont have time to see the negative in everything but always find the positive instead. Its refreshing to hear about someone who has suffered their entire life growing up and rather than point fingers and blame, they are constantly striving to overcome and move forward. One extreme example of exactly this type of positivity happens to be The Dutchess. (I chose to keep her real name private due to her up and coming R&B breakout). When I met her, even before I could see her face from across the room, I was in love. It was that classic case of "you'll know when you meet them" and that couldnt be more true. Everytime I looked into her eyes, it was like I was seeing her for the first time all over again. She is the most amazing person I've ever met hands down.
Her life was filled with negative roadblocks which quite honestly, I was moved to tears a few times by how hard she had it as a child growing up but what I loved the most was how she told all the stories with a smile on her face and said how that experience made her move to the next level of positive movement. It gave me a feeling inside that I just can't explain but made me realize there wasnt anything I wouldnt do to help this girl or be there for her as she climbs to success in the music industry. Her love for family, the closeness to her mom is by far something any person would envy. I was humbled to be in her presence sometimes just listening to how much her family struggled yet their love and devotion towards each other kept things always positive. Very inspirational girl who will always be one of the most amazing people I've ever met and for sure the FIRST GIRL that I ever fell in love with as an adult. Ti Amo, Dutchess
This brings me to where I feel I want this blog to go, aiming towards the positive people that just make life that much better when you are around them whether it be in person or via social networks. I've had the pleasure of meeting a very large network of amazing Italian people via reality TV. These are individuals that exist in any REAL Italian neighborhood and we can associate that we know someone just like any one of them but overall, we feel like they are now "FAMILY" because of how appreciative they are for fan support.
@carfellamikeyD aka Mike DeLucia and his beautiful wife Nanci are constantly updating fans of where they are, who they met and ALWAYS interact with fans which makes them feel as though you've known them all your life. As it turns out, although the Italian population is massive on the east coast especially, its not uncommon to know someone that knows someone that knows Mike so in the end you know them by association as well as by who they are on TV. His crew Tommie & Mario, although dont engage as much with the fans on social networks, you have a feel that they are aces in person and any friend of Mikey D is a friend of mine. #carfellas
@GiovanniPaoloNY @BIGCHIPmamasboy @PrettyboyPeteD @anthonymamasboy @bxmamasboys having just met all of the crew on Monday nights, I'm already impressed with how they all have allowed each one of us, the fans, to become involved in their lives at home. They interact with everyone on the social networks and are extremely appreciative of the support they receive. Yet another group of Italian people who never forget where they come from & know who their friends are. The Italian culture can be misunderstood sometimes so a show such as #mamasboysofthebronx can appear to the average WASP that these guys are "using" their moms and should move out. Well what you see on TV is an exaggerated example of what looks to be somewhat odd but what you dont see is the off camera, everyday life of these individuals (and many more you dont know) who will do anything for their family, the world revolves around their moms, and the close unity of friends & family that truly defines each one of these guys who will always have the utmost respect for anyone who respects them back. In the true Italian culture, the Italian son can do no wrong & is worshiped by their moms and in return the true dynamics of family values are learned that above all else, we never forget where we truly came from, the person who gave us life in the first place.
I'm fortunate to have also met, through the above named individuals one of the most positive people I think this world has ever known. @Stucatz Big Vin has the most amazing, uplifting words of the day so to speak that just makes you feel that there are no obsticles in life that can't be overcome. We need more people like this around each one of us so that it helps us realize that no matter what is going on around us daily, there is always something positive to be found if we look hard enough. Thats an amazing way to look at life if you really sitdown and understand it. I've always been optimistic, mostly positive, so I appreciate when there is someone who lives, breathes positive energy and makes everyone around them feel the passion for being the same way.
When the doctors told me they were unsure I'd make it to see my youngest daughter turn 2, I didnt curl up in a little ball and demand "why me"? I was determined to prove them wrong and having received this news during a very negative divorce, I still maintained the most positive demeanor that to this day, most people around me dont even know I'm having medical issues. Its all about how you channel your energy and make negative in your life turn towards a positive direction. I saw my little girl turn 2, that was November 2011 and I'm sitting in front of a computer telling you all about it in April 2012 so you can see for yourself what positive energy has to offer anyone willing to engage in it daily. Yes its true that what I have has no known cure, and yes its a fatal syndrome which can take me anyday, anytime but you know what, its going to have to come at me with gloves on because I am fighting this shit right to the grave my friends. I set goals to achieve and I'm moving forward day to day with positive energy and positive people. I want to thank you personally Vinny, I read alot of things but your words have extreme impact for me and its confirmation that my positive outlook on life even with negative anchors attached, its the good I see instead of the bad. You've justified that by what you write and share with each of us in your posts. Grazie!
In closing i'd like to say that you always need to be proud of who you are and where your family came from. Regardless of the ethnicity, you always put your best foot forward and show the world that a positive outlook will overcome any and all negative anchors that we all have to deal with daily. Strive forward in life never forgetting where you came from, use the power of family to achieve the highest goals imaginable and live to make a difference in not only your childrens lives but all those you come in contact with as you go about your daily activities. Thanks for reading and make sure you follow the lives of some truly great people on TV such as #mobwives #carfellas #mamasboysofthebronx etc... Ciao all!
Monday, November 28, 2011
Perhaps A Breakthrough?
Anybody who suffers any kind of syndrome no matter what the name is or the effects of the ailment, its the words "not curable" that resound mostly in our head. Todays technology just seems to be so far advanced that it seems almost mind boggling that there isnt a solution to all problems in the medical field. For someone who suffers from ANS aka Dysautonomia, this is the mother of all nervous system syndromes due to the complexity of origination, containment and long term prognosis. Once you become progressive, lucky me to have gotten to that level, the doctors have a much harder time trying to rectify all the abnormal issues that arise in a normal day, week, month etc... When you suffer from Fibromyalgia, Parkinsons, Chronic Fatigue, Neorapathy with the list going on and on, its unimaginable that so much is actually wrong with you all at once and containment is the goal and only goal. I'm not a fan of the "symptom of the day" so to speak, I'd rather know that everyday I wake up, there is a constant issue where doctors can focus their efforts and make this go away. Sadly, this in not the case with Dysautonomia, it loves to mimic all of the nasty syndromes even borderline on the edge of MS given the right platform and so thus creating a much more complicated diagnosis because most doctors would rather stumble upon something obvious like Fibromyalgia, treat it and perhaps you have a few halfway decent days a month. So you think "Oh great, progress" where in fact you have fallen short of what is actually needed to correct the other days of the month that take on symptoms other then the FM.
For me at this point and time, I take a series of 26 pills a day, morning and evening just to have daily function and keep up the lifestyle of a mid 40's single man with young children who need their dad. Its a proven fact that if I dont pace myself, I can easily burn myself out day one of their three day stay and become a couch potato ruining their chances of having fun doing other events. So I try so hard to make sure I see the early signs of fatigue and try to shut down before I am forced to shut down by my own body. Its still a learning curve because I have always been the type of Aries male that doesnt believe the word "can't" exists so when I do something one day, I have to "one up" it the next day and so on so forth. This is fine of you are practicing sports to achieve that next level, I know this from hours and hours of playing pool however, when you have a body that dictates where, when and how, your choice of doing that is very limited and there is no such thing as being a hero.
When I began to have some really serious symptoms, the swelling of my throat being probably one of the most dangerous, followed by the "crushing diaphram", my doctor obviously became more and more concerned that I was seriously sliding downhill and she couldnt help me. I could tell for the first time she was scared for me, this was obvious when she was looking at the floor rather than in my eyes when I said how serious a problem is this. Her body language and dimeanor said it all which led me to my next question, will I see my baby girl turn two? It wasnt a question that got an immediate yes, it was a lead into the fact that other testing was needed asap. So I read between the lines and prepared for the worst so that I was ready in case. Once a plan was in place I could combat this more comfortably knowing that if I gave it 1000% and still lost, certain things were taken care of and in times of sorrow, this would be indeed a godsend. I admit that sitting down with a funeral director was a bit uncomfortable but having done some work for funeral homes in the past, I had been able to keep it together as I toured the grounds for a plot, picked out a casket and gave my wishes to the funeral home of choice. As it was on one hand a sign that I was losing, it was also a victory because I could no focus completely on finding my own remedy or cure. I have spent hours upon hours online researching all the different facets of this syndrome and of course having all the worst possible symptoms of it, prognosis is always the same, unknown outcome, sudden death syndrome with no real cure to be found, and when I say cure, I mean a means of containment, miracle drug (s), surgery, therapy anything that would extend quality of life. Its frustrating to be up against such a large opposition but I was determined I had to find something.
Somewhere in between all of this heartache and misery, along with a nasty divorce in its final stages as if I didnt have enough going on, I slipped away one evening to just get out. My first time out in a social setting without my children and not over to a friends house where I had been numerous times. Nope, this time I went to a club to just hear some music, maybe talk to some new people or not, I could easily sit alone and just absorb the life away from always looking for a miracle. So I entered the club, sat down furthest from everyone in the place and ordered my diet Coke. I was in there about 40 seconds when I realized, I really didnt want to be there. I had made an error. As much as I enjoyed the music, I just didnt feel comfortable being there by myself nor did I really feel like being social. A familiar face however got me to chat a tiny bit, the waitress rememered me from when I was there 7 or so months ago, I tip really well having been a bartender at one time in my life I know what is most important to always get great service whenever you do a repeat somewhere. So she remembered me after all those months and even though I was way off on her name, she still smiled and asked the usual BS questions. I had handed her a 20 and she realized she had to get more change from the bar so she walked away. When she returned with the change and was counting it out we talked a tiny bit, chit chat and I gave her a tip my usual overboard denomination and began to lift my drink. I suddenly froze and apparently my facial expression was one that she felt compelled to ask if everything was ok. I was staring at a girl who was a good 25 feet away and I literally was speachless at how beautiful she was at that distance. I stuttered when asking the waitress who she was and she just looked at her and said I dont even know her, never seen her in here before. Before I could say another word, the waitress asked if I wanted her to go and say something to this girl who was now at the bar. I told her no, I literally was tongue tied and just told her that a girl like that I wouldnt even know how to even start a conversation she was that amazing. Well the waitress bee lined right to her and suddenly this absolute goddess was looking over my way and I could only imagine that she was just thinking to herself, "what a loser, wont even come over and introduce himself". I dont think I could have made my legs walk, I just could not believe how amazingly beautiful she was.
Well whatever the waitress said to her, to this day still unknown, this girl made her way right over to me and sat down right next to me. I almost had a heartattack. At 25 feet she was beautiful, right next to me, she was a STUNNING GODDESS. All I could say rather than "hey, my name is, whats yours?" I blurted out "you are the most beautiful girl I have ever seen". That was the ice breaker. Her smile and comment about how I made her blush started to make me feel comfortable and for the next 6 hours, we never took eyes off of each other. I could not stop staring into her eyes and telling her how amazing she was, she truly was breathtaking and I just knew I had to somehow make this night the best ever because I really felt due to where she lived, (hour and half away) this could be the first and last time we met. She was reluctant about exchanging numbers, even though I wasnt drinking thus not making an ass out of myself, she had been badly burned in a relationship two months prior and had no intentions of really meeting anyone new. She told me straight out that caution was going to be very high and I felt the same after 14 years with the same woman getting a text that the marriage is over, you do kind of lose faith in the opposite sex, and trust is gained not assumed.
So as to not be to overly forward we both decided to exchange email addresses and to be honest, even after 6 amazing hours with her of non stop talking and laughter, I was still skeptacle that she might just give me bogus info to be safe seeing as she was there pretty much by accident and intended to go back to the other coast. I am the optomist however, the side I much prefer, I decided to email her as soon as I got home and was curious to see if she'd respond. Imagine how thrilled I was when I got a response the next day from her, mid afternoon. I realized that there was potential here to perhaps see her again and I knew that a response meant she was slightly interested. So knowing that my children were with me until Sunday morning I knew to keep the emails very light so I didnt come out of my skin wanting to go over to see her, I wont sacrafice my time with my children for anyone but I didnt need the extra stress of her wanting me to be there and I had to say no.
I told her I was free Sunday evening and she didnt jump at the chance to meet so I figured here comes the caution she warned me about, I guess I'll take it back a notch. Later Sunday evening however, she did ask me if I could meet her by her home at a place she felt comfortable around noon. I almost jumped through the computer. I was ready to rock! I got the address of the location, mapquested, punched it into GPS on my phone and left the next morning to make the hour and half drive to see her. In my excitement, I forgot the printed Mapquest directions and as I approached the other coast, my phone GPS lost signal so I began to almost hyperventilate. How could I leave the directions behind. Luckily I remembered the address and actually texted a friend of mine to Mapquest it and text me the info. He did so and I made it on time. She was already there and she looked even more spectacular then she did the previous time I saw her. Much to her surprise, I showed up. Why in Gods name wouldnt I??? Apparently, most guys would have tried to make her come to them which I didnt even try to do and without a single sign of negativity, I shot across the state to see her, this won me some serious brownie points.
This began a three day multiple hour visits that were more amazing each time. We would spend 6 to 8 hours just talking, laughing, learning about each other never a single awkward silence, I pinched myself at one point which she kinda thought was odd but I explained that I wanted to make sure I was truly awake and it wasnt a fantasy. I managed to say all the right things, nothing stupid, and oddly enough, I was falling for her with no sign of return. She was indeed infectious. I knew that after I left her Wednesday evening I wouldnt see her until the following Monday because I was with my kids again so it was extremely hard to say goodbye that night, for both of us. I left with a smile ear to ear, I was on cloud 9, she was into me and all eyes were on us because she was the super hottie and I was that guy that everyone goes, "how did he end up with her?"
As I began to miss her Thursday and Friday, I also noticed something rather odd. My symptoms were relentless, I was worse then I had ever been. I could barely drag myself off the couch and I contributed this to all the travel back and forth. I increased some of the inflammatory drugs due to excessive pain and aches but I had never felt this awful. I knew I had pushed it too far. But with this tribulation, I also recalled that when I was with her, my symptoms, even the ones that are always there day to day, the constant naggers, were almost undetectable or for the most part extremely ignored by my conscious self. I realized that I had the ability to do the "mind over matter" when it came to pain and being with her. It was something I began to actually put alot of thought into and of course the fact that I really felt I was falling in love with her only after knowing her for 4 days technically. So I emailed her about my health demise, I was honest about my long term prognosis and she didnt run away, you have to respect and idolize a woman like that who is willing to fight the fight with you knowing it could have a poor outcome. Thats a sweet person right there, forget her beauty, just take in the fact that she knew ALL my medical complications and insisted on seeing me the next day. Mad respect for a girl like that.
So for shits and giggles, I decided to just Google the perception that I had fallen in love, was there a possibility of chemical release that could actually aid in the prevention and or control of ANS or other affiliated syndromes? I expected a humorous outcome from some Arab based site or some other weird situation but when published accounts of how the body reacts to "love, sensuality, sexual desire, physical attraction" I almost fell of my chair. It wasnt in my head at all, well I mean as a fictional thought pattern anyway, it was a proven medical fact on numerous sites that being in this kind of euphoria actually releases the chemicals in the body/brain that aid in keeping the ANS under control. Could it be that meeting this girl basically on a pure coincedence, (neither one of us were supposed to be in the first club we met, both had plans that fell through with other people and ended up there) she could actually hold the key to a successful containment of ANS? Well let me tell you, when I saw her the following Monday and my symptoms deminshed when I was with her and everyday after that until we were separated and I was alone with the kids again, thus my body fell into an extreme symptomatic situation, it had become clear that for me, these chemicals were indeed essential for my body to remain even. I needed to get with my dr asap. With the holiday of course she is out of town until my next appt but let me tell you how excited I am to know that this girl may have unlocked the key to my successful future in "remission" so to speak. I thanked her over and over of course which she can't understand how shes responsible, kind of blows her mind but nevertheless, after months and months of online research, the answer was actually right in reach with this girl. I had to fall in love though, lol no issues there, I am loving that especially with her!!
So in closing, rather than saying exactly what I found, I want to get with my doctor to see if what I need is available in a medicinal way. I will share the second I have it in my hands that is for sure. As for now, I am letting love led the way. Thanks for reading
For me at this point and time, I take a series of 26 pills a day, morning and evening just to have daily function and keep up the lifestyle of a mid 40's single man with young children who need their dad. Its a proven fact that if I dont pace myself, I can easily burn myself out day one of their three day stay and become a couch potato ruining their chances of having fun doing other events. So I try so hard to make sure I see the early signs of fatigue and try to shut down before I am forced to shut down by my own body. Its still a learning curve because I have always been the type of Aries male that doesnt believe the word "can't" exists so when I do something one day, I have to "one up" it the next day and so on so forth. This is fine of you are practicing sports to achieve that next level, I know this from hours and hours of playing pool however, when you have a body that dictates where, when and how, your choice of doing that is very limited and there is no such thing as being a hero.
When I began to have some really serious symptoms, the swelling of my throat being probably one of the most dangerous, followed by the "crushing diaphram", my doctor obviously became more and more concerned that I was seriously sliding downhill and she couldnt help me. I could tell for the first time she was scared for me, this was obvious when she was looking at the floor rather than in my eyes when I said how serious a problem is this. Her body language and dimeanor said it all which led me to my next question, will I see my baby girl turn two? It wasnt a question that got an immediate yes, it was a lead into the fact that other testing was needed asap. So I read between the lines and prepared for the worst so that I was ready in case. Once a plan was in place I could combat this more comfortably knowing that if I gave it 1000% and still lost, certain things were taken care of and in times of sorrow, this would be indeed a godsend. I admit that sitting down with a funeral director was a bit uncomfortable but having done some work for funeral homes in the past, I had been able to keep it together as I toured the grounds for a plot, picked out a casket and gave my wishes to the funeral home of choice. As it was on one hand a sign that I was losing, it was also a victory because I could no focus completely on finding my own remedy or cure. I have spent hours upon hours online researching all the different facets of this syndrome and of course having all the worst possible symptoms of it, prognosis is always the same, unknown outcome, sudden death syndrome with no real cure to be found, and when I say cure, I mean a means of containment, miracle drug (s), surgery, therapy anything that would extend quality of life. Its frustrating to be up against such a large opposition but I was determined I had to find something.
Somewhere in between all of this heartache and misery, along with a nasty divorce in its final stages as if I didnt have enough going on, I slipped away one evening to just get out. My first time out in a social setting without my children and not over to a friends house where I had been numerous times. Nope, this time I went to a club to just hear some music, maybe talk to some new people or not, I could easily sit alone and just absorb the life away from always looking for a miracle. So I entered the club, sat down furthest from everyone in the place and ordered my diet Coke. I was in there about 40 seconds when I realized, I really didnt want to be there. I had made an error. As much as I enjoyed the music, I just didnt feel comfortable being there by myself nor did I really feel like being social. A familiar face however got me to chat a tiny bit, the waitress rememered me from when I was there 7 or so months ago, I tip really well having been a bartender at one time in my life I know what is most important to always get great service whenever you do a repeat somewhere. So she remembered me after all those months and even though I was way off on her name, she still smiled and asked the usual BS questions. I had handed her a 20 and she realized she had to get more change from the bar so she walked away. When she returned with the change and was counting it out we talked a tiny bit, chit chat and I gave her a tip my usual overboard denomination and began to lift my drink. I suddenly froze and apparently my facial expression was one that she felt compelled to ask if everything was ok. I was staring at a girl who was a good 25 feet away and I literally was speachless at how beautiful she was at that distance. I stuttered when asking the waitress who she was and she just looked at her and said I dont even know her, never seen her in here before. Before I could say another word, the waitress asked if I wanted her to go and say something to this girl who was now at the bar. I told her no, I literally was tongue tied and just told her that a girl like that I wouldnt even know how to even start a conversation she was that amazing. Well the waitress bee lined right to her and suddenly this absolute goddess was looking over my way and I could only imagine that she was just thinking to herself, "what a loser, wont even come over and introduce himself". I dont think I could have made my legs walk, I just could not believe how amazingly beautiful she was.
Well whatever the waitress said to her, to this day still unknown, this girl made her way right over to me and sat down right next to me. I almost had a heartattack. At 25 feet she was beautiful, right next to me, she was a STUNNING GODDESS. All I could say rather than "hey, my name is, whats yours?" I blurted out "you are the most beautiful girl I have ever seen". That was the ice breaker. Her smile and comment about how I made her blush started to make me feel comfortable and for the next 6 hours, we never took eyes off of each other. I could not stop staring into her eyes and telling her how amazing she was, she truly was breathtaking and I just knew I had to somehow make this night the best ever because I really felt due to where she lived, (hour and half away) this could be the first and last time we met. She was reluctant about exchanging numbers, even though I wasnt drinking thus not making an ass out of myself, she had been badly burned in a relationship two months prior and had no intentions of really meeting anyone new. She told me straight out that caution was going to be very high and I felt the same after 14 years with the same woman getting a text that the marriage is over, you do kind of lose faith in the opposite sex, and trust is gained not assumed.
So as to not be to overly forward we both decided to exchange email addresses and to be honest, even after 6 amazing hours with her of non stop talking and laughter, I was still skeptacle that she might just give me bogus info to be safe seeing as she was there pretty much by accident and intended to go back to the other coast. I am the optomist however, the side I much prefer, I decided to email her as soon as I got home and was curious to see if she'd respond. Imagine how thrilled I was when I got a response the next day from her, mid afternoon. I realized that there was potential here to perhaps see her again and I knew that a response meant she was slightly interested. So knowing that my children were with me until Sunday morning I knew to keep the emails very light so I didnt come out of my skin wanting to go over to see her, I wont sacrafice my time with my children for anyone but I didnt need the extra stress of her wanting me to be there and I had to say no.
I told her I was free Sunday evening and she didnt jump at the chance to meet so I figured here comes the caution she warned me about, I guess I'll take it back a notch. Later Sunday evening however, she did ask me if I could meet her by her home at a place she felt comfortable around noon. I almost jumped through the computer. I was ready to rock! I got the address of the location, mapquested, punched it into GPS on my phone and left the next morning to make the hour and half drive to see her. In my excitement, I forgot the printed Mapquest directions and as I approached the other coast, my phone GPS lost signal so I began to almost hyperventilate. How could I leave the directions behind. Luckily I remembered the address and actually texted a friend of mine to Mapquest it and text me the info. He did so and I made it on time. She was already there and she looked even more spectacular then she did the previous time I saw her. Much to her surprise, I showed up. Why in Gods name wouldnt I??? Apparently, most guys would have tried to make her come to them which I didnt even try to do and without a single sign of negativity, I shot across the state to see her, this won me some serious brownie points.
This began a three day multiple hour visits that were more amazing each time. We would spend 6 to 8 hours just talking, laughing, learning about each other never a single awkward silence, I pinched myself at one point which she kinda thought was odd but I explained that I wanted to make sure I was truly awake and it wasnt a fantasy. I managed to say all the right things, nothing stupid, and oddly enough, I was falling for her with no sign of return. She was indeed infectious. I knew that after I left her Wednesday evening I wouldnt see her until the following Monday because I was with my kids again so it was extremely hard to say goodbye that night, for both of us. I left with a smile ear to ear, I was on cloud 9, she was into me and all eyes were on us because she was the super hottie and I was that guy that everyone goes, "how did he end up with her?"
As I began to miss her Thursday and Friday, I also noticed something rather odd. My symptoms were relentless, I was worse then I had ever been. I could barely drag myself off the couch and I contributed this to all the travel back and forth. I increased some of the inflammatory drugs due to excessive pain and aches but I had never felt this awful. I knew I had pushed it too far. But with this tribulation, I also recalled that when I was with her, my symptoms, even the ones that are always there day to day, the constant naggers, were almost undetectable or for the most part extremely ignored by my conscious self. I realized that I had the ability to do the "mind over matter" when it came to pain and being with her. It was something I began to actually put alot of thought into and of course the fact that I really felt I was falling in love with her only after knowing her for 4 days technically. So I emailed her about my health demise, I was honest about my long term prognosis and she didnt run away, you have to respect and idolize a woman like that who is willing to fight the fight with you knowing it could have a poor outcome. Thats a sweet person right there, forget her beauty, just take in the fact that she knew ALL my medical complications and insisted on seeing me the next day. Mad respect for a girl like that.
So for shits and giggles, I decided to just Google the perception that I had fallen in love, was there a possibility of chemical release that could actually aid in the prevention and or control of ANS or other affiliated syndromes? I expected a humorous outcome from some Arab based site or some other weird situation but when published accounts of how the body reacts to "love, sensuality, sexual desire, physical attraction" I almost fell of my chair. It wasnt in my head at all, well I mean as a fictional thought pattern anyway, it was a proven medical fact on numerous sites that being in this kind of euphoria actually releases the chemicals in the body/brain that aid in keeping the ANS under control. Could it be that meeting this girl basically on a pure coincedence, (neither one of us were supposed to be in the first club we met, both had plans that fell through with other people and ended up there) she could actually hold the key to a successful containment of ANS? Well let me tell you, when I saw her the following Monday and my symptoms deminshed when I was with her and everyday after that until we were separated and I was alone with the kids again, thus my body fell into an extreme symptomatic situation, it had become clear that for me, these chemicals were indeed essential for my body to remain even. I needed to get with my dr asap. With the holiday of course she is out of town until my next appt but let me tell you how excited I am to know that this girl may have unlocked the key to my successful future in "remission" so to speak. I thanked her over and over of course which she can't understand how shes responsible, kind of blows her mind but nevertheless, after months and months of online research, the answer was actually right in reach with this girl. I had to fall in love though, lol no issues there, I am loving that especially with her!!
So in closing, rather than saying exactly what I found, I want to get with my doctor to see if what I need is available in a medicinal way. I will share the second I have it in my hands that is for sure. As for now, I am letting love led the way. Thanks for reading
Tuesday, November 15, 2011
Still In Limbo
Once again I find myself in that same dilemma of knowing but not knowing whats next when it comes to my medical issues. After testing positive for the HLA-B27 and a positive ANA profile, you would think that all would be cut and dry, move towards diagnosis and then towards the probable course of treatment. Not so fast! It appears that with the complications of having an ANS disorder lurking and too many possitive signs of a high number EDS disorder, this has even cause the new doctor to second guess his next move. Knowing how I can test positive for something in the morning and negative in the evening has him quite scarred and for good reason, I have given him a spreadsheet of my bloodwork over the last ten years all catagorized for easy viewing, this made it very easy for him to realize that again, is he dealing with a true AS situation, or is it a false positive HLA-B27 which will lead to the, why would it show a genetic mutation in the first place? I can not believe that I am now faced with yet morei iobsticles and fewer answers as I go. The only person that made any sense at all was the Optometrist who explained that the ANS disorder was causing severe focus issues with my eyes and the only way he could see a possible solution was to fit me with glasses. Its a weak prescription at best and progressive lenses which someone having balance issues and nausea should really be prepared for many uncomfortable situations to come up just by merely turning your head too fast. I think I am finally getting used to having them on 24/7 and I have to admit, it has kept my vision more accurate on a daily basis rather than one day I can see the next I can't.
I find that the most draining of all the issues weighs heavily on whether I do too much physically or I get into a heated discussion with someone. This causes major muscle failure and uncontrollable spazms thoughout the body which bypasses any of them medication that has been administered to prevent those symptoms. It literally drains me to the point of exhaustion and its a feeling I truly hate with a passion. Probably the most helpless feeling in the world that you know your body is letting you down when your mind is wanting to go do something. I have read up on this and most of what I find leads back towards ME/CFS which is quite possible with any ANS issues present. Of course its one of the most difficult to diagnose because it seems most doctors want to believe there is something else wrong with you rather than the fact that its just possible that severe fatigue is truly the culprit.
I found that steriods did help with the joint and bone pain to some degree and as I am now off the dose pack for several days I am beginning to notice the return of the nagging pain that was severe in my leg bones especially and hip joints. I hope that by the doctor giving me that dose pack and it having some benefit, it leads him to some conclusion of what may be next. I dont take pain medication with the exception of Naproxen, (Turbo Aleve) so unlike most of my fellow sufferers who can turn to the percocet, or oxys for relief, that world doesnt exist for me. I unfortunately have to grin and bear it. Not sure how much longer I can endure that sort of punishment but for now, I just dont feel adding more pills to my regiment of ridiculous medication intake is in the cards for me at the moment. Besides, having two small children to attend to half the week which requires alot of driving, I dont want anything that would hinder my ability to drive in any way. My exwifes attorney is just itching for another reason to be a pain in the ass, so I am sure that using my medications against me would be her next planned attack. I have no respect for that C ending in T. I am certainly not done with her by any means, I'll let her have her glorydays with me thinking shes winning in court etc and then "surprise bitch" bet you didnt see that coming. When you live in a smaller community, its wise to make sure that the person you are going after doesnt do alot of checking into your past as you are doing to his. It could become rather embarrassing. Touche'
So at present time, I am still no further on the extreme fatigue, the burning under the skin, continued memory loss, the excessive shaking, in ability to use my hands at times to open things etc... I'm glad we have the diagnosis though! Hats and horns on that one. I didnt expect it to be overnight success but I guess I just figured that now that everyone was on the same page, it would be smoother. I'm not seeing smoother yet. I am however seeing the return of my narcolepsy. I love just slipping off to sleep and waking not even knowing I feel asleep in the first place. Its especially entertaining when at the computer sitting upright in the chair, fingers still on the keyboard. I think the cutback on amphetamines was good in a way, but I can see where its going to be bad for other areas. Damned if you do, damned if you dont.
I find that the most draining of all the issues weighs heavily on whether I do too much physically or I get into a heated discussion with someone. This causes major muscle failure and uncontrollable spazms thoughout the body which bypasses any of them medication that has been administered to prevent those symptoms. It literally drains me to the point of exhaustion and its a feeling I truly hate with a passion. Probably the most helpless feeling in the world that you know your body is letting you down when your mind is wanting to go do something. I have read up on this and most of what I find leads back towards ME/CFS which is quite possible with any ANS issues present. Of course its one of the most difficult to diagnose because it seems most doctors want to believe there is something else wrong with you rather than the fact that its just possible that severe fatigue is truly the culprit.
I found that steriods did help with the joint and bone pain to some degree and as I am now off the dose pack for several days I am beginning to notice the return of the nagging pain that was severe in my leg bones especially and hip joints. I hope that by the doctor giving me that dose pack and it having some benefit, it leads him to some conclusion of what may be next. I dont take pain medication with the exception of Naproxen, (Turbo Aleve) so unlike most of my fellow sufferers who can turn to the percocet, or oxys for relief, that world doesnt exist for me. I unfortunately have to grin and bear it. Not sure how much longer I can endure that sort of punishment but for now, I just dont feel adding more pills to my regiment of ridiculous medication intake is in the cards for me at the moment. Besides, having two small children to attend to half the week which requires alot of driving, I dont want anything that would hinder my ability to drive in any way. My exwifes attorney is just itching for another reason to be a pain in the ass, so I am sure that using my medications against me would be her next planned attack. I have no respect for that C ending in T. I am certainly not done with her by any means, I'll let her have her glorydays with me thinking shes winning in court etc and then "surprise bitch" bet you didnt see that coming. When you live in a smaller community, its wise to make sure that the person you are going after doesnt do alot of checking into your past as you are doing to his. It could become rather embarrassing. Touche'
So at present time, I am still no further on the extreme fatigue, the burning under the skin, continued memory loss, the excessive shaking, in ability to use my hands at times to open things etc... I'm glad we have the diagnosis though! Hats and horns on that one. I didnt expect it to be overnight success but I guess I just figured that now that everyone was on the same page, it would be smoother. I'm not seeing smoother yet. I am however seeing the return of my narcolepsy. I love just slipping off to sleep and waking not even knowing I feel asleep in the first place. Its especially entertaining when at the computer sitting upright in the chair, fingers still on the keyboard. I think the cutback on amphetamines was good in a way, but I can see where its going to be bad for other areas. Damned if you do, damned if you dont.
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