Alot has been happening in the world of ANS which is my world. Not sure if I revealed that I was preparing to explain more details to my exwife or not but I had to break the ice in order to get the testing begun on our seven year old. With the possibilities of him having the early symptoms of this ANS nightmare, the quicker we get it researched, the better overall for him to live a fairly normal life should he prove positive. With mine having gone undetected for essentially a good 40+ years, I am now in the full progressive state and the syndrome has a way of manifesting new symptoms far above anything I was prepared to handle.
For years I have dealt with the angina, pre-syncope issues and all cardiac type of symptoms associated with this lovely disorder and as time has progressed, I have even gotten used to the Neurological, Gastroenterology, Urology issues that have sprung up along the way. Not that I am a pro or anything but I have been able to adapt a lifestyle around this monster and for the most part, up until 2010, I was winning to some degree. However, here we are in 2011 and I have to give this round to ANS/NCS thus far. I have been plagued with symptoms that just linger for days and really disrupt the normal cycle of life I was so accustomed too. I dont want to say that I am looking forward to getting used to these new symptoms, they are extremely disabling and at just under mid 40's, I feel I am just months shy of needing a cane or some other type of walking assistance device. The only thing thats left strong on me is my spirit and will to defeat this with all the odds stacked against me, I love a good fight.
I had a sitdown with my exwife today and as I expected all was well until she became emotional. I didnt ask for the divorce, I'm not happy about the divorce but to find out so many aspects of my failure in the marriage is due to this medical syndrome, I can see where she has become almost engulfed with guilt that had she hung in there just a few weeks/months longer we may have been able to get the diagnosis and perhaps move towards reconstruction of our marriage. Its easy to take that stand now because I know in my heart I want to believe it would have been true but on the other side of things, the reality of it all, my future is still shaky at best and to subject her to being a widow at her age of mid 30's, I'm not sure thats any more fair than her asking me for the divorce. The true victims here are the kids. Two of the oldest girls know and I was quite surprised how well they took the overall news. The younger of the two, shes 18 now, has almost shifted into a maternal mode which I have never seen with her before. I am trying to spend time with her as much as possible in case I do slip the wrong way. Caroline Manzo, one of my truly inspirational favorite reality stars, had commented about life with smiling children. As it was retweeted by Kathy Wakile, it really struck me hard realizing just how precious those smiles are and the fact that I could be limited to the exposure to them is overbearing. For two woman I've never met who just merely spoke and thought from the heart, simply put, they defined exactly whats important in life. I see families pulled apart by drama, no mentions of names but they know who they are and when you find that you arent invincable, its sometimes too late to mend fences. Family is family and if you enjoy the smile of your children, then those smiles should be shared with everyone in the family at all times. Leave the bickering behind and consider the fact that at any moment something unforseen can truly change your life forever. I am living proof of that. I went from nuisance ailments that all had serious formalities involved and such but overall survivable and now, I am told to get my affairs in order.
Sit there for a minute and absorb that. Now add in five children ages, almost 2, 7, 18, 19 and 21. Picture all those wonderful times you share with each one of them either as a group or individually and then close yourself in a closet with the lights out to simulate what you'll see for eternity rather than their smiling faces. Now that I have your attention, is it worth not talking to family members over silly garbage? Reality knows no rules and will hit below the belt before the uppercut delivers the fatal blow, so wake up and smell life, its right in front of you waiting for your inspiration.
My other two girls sadly life so far away. With one in California and the other in South Carolina, times like this are especially hard because you just dont know when you'll see them the next time. I am generally optomistic, and the fact that I poke humor at this all the time even to the point I want to test drive coffins is just an extension of my personality, you cant bring me down. Teresa Guidice said it best that shes a Jersey girl and nothing brings her down, well same rules apply for the men as well. We just keep getting back up until theres nothing left. We are high spirited and certainly able to roll with the punches.
My babies, little G who turns 2 in November and Mr. Skwoosh who is now 7, are the ones who will most suffer from all thats occuring. The divorce itself has burdened them with such uncertainty that after you spend countless hours reassuring them you arent going anywhere, for something to happen to you, its as if you've told them the most awful lie in the world. The trust they will lose in their lives will be unimaginable. So that weighs heavy on me currently as well as the fact that my son has to start testing as well to make sure that his symptoms are benign and not the early progression of what I have. I am already crushed that hes possibly affected so him testing positive will be a very difficult road to travel. With this being a stress driven syndrome, anything added will just run me down quicker and at that point I am no good to anyone. I wouldnt wish any of this on my worst enemy, truly a disgraceful, relentless, savage type of disorder. To find the origin and be able to advocate throughout the country in hopes of prevention would be a goal well worth its weight in gold but sadly I cant find the link. I wont give up and I hope that should I pass one of my daughters continue the mission of getting to the source of this genetic animal.
I was heading somewhere earlier with this blog and I got sidetraced but after stubbing my toe I suddenly became refocused. I was into the sitdown with my exwife a very short time and she was visibly shaken and extremely upset which I take no pride in seeing anyone that way. I didnt want to tell her in the first place because I truly felt that A. she might have guilt or remorse knowing it was a medical issue that truly drove us apart, B. she tends to get emotional alot these days and knowing that we had just discussed my sons possible link, she was treading thin already and C. shes an RN and usually they are ready for the doom and gloom of any ailment they encounter. I can remember my youngest going into the hospital at around 11 months for dehydration mostly but they needed to draw blood and when someone called my wifes cell, instead of saying blood work looked fairly normal, she says "they've ruled out luekemia". I am the father and I didnt even know they were even looking for that but then realized the source. You could have a hangnail and she'd tell someone that you avoided amputation of the limb. So you can see my hesitation to share. At any rate I receive a phone call that when it seems that your life is in the crapper already, why not add one more thing to see where everyone is. My blood work now reveals an autoimmune disorder to top off my ANS issues. So my ex gets to listen in on that wonderful bit of news and well it kind of sets the mood for the rest of the talk. So now I am ANS/NCS/AS which the AS could change after I see the specialist. I chose the less damaging of the autoimmune, my optimistic blend there, and added that rather than Sjodgen Syndrome, just seemed like the polite thing to do. I wasnt surprised exactly, had been doing my reading on the ANS disorder and how in the progressive state it takes over the host but I was really kind of hoping for negative blood work. Oh well, keep it coming and God if you are listening, if you adding these syndromes to me one by one somehow spares the lives of multiple children by either beating cancer or not ever testing positive for cancer in the first place, bring it one, keep adding. You havent broke me yet and if it means saving lives, I am all for it. I've not done anything in my life really that I am overly proud of so let me pull out all the stops in the final sprint!
In closing, life is still what you make it. Yes I have all these issues and granted I could meet demise any day, thats not a reason to assume the fetal position and have a why me attitude. It means to find what will make you happy and keep your mind off the issues as best as possible so that you can deal with the everyday aches and pains. I found my niche, RHONJ on Twitter, tweeting with the Wakiles, the Manzos, the Marinos and good old MikeyD, it doesnt get much better. I use Dina Manzos quotes as my goal for finding a more peaceful me, Caroline Manzo, Rich & Kathy Wakile for inspiration when it comes to positive parental values. Amazing how the children are but when you see the core, the parents, it makes sense. To not take notes or try to learn from them is foolish. Of course theres Teresa Guidice, my favorite "character" of RHONJ. She is classic and makes me laugh outloud. One day of course I am hoping to get her to tweet me, its a work in progress. We'll see, I never give up hope, lol. MikeyD and his crew, whats there not to love? If they dont make you think NY when they speak or even mime their movements, then no one will. The Marino/Yates Klan, hoping more to come from their show. I enjoy chatting with them daily, good people. Anyway, thats all for now folks and for all those busy Reality celebs that take the time to respond, thanks for keeping it real. I enjoy the chats. Thanks for reading.
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