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
Monday, November 28, 2011
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.
Sunday, October 30, 2011
Dysautonomia & Autoimmune Issues, The Known/Unknown Dilemma
I guess I have become a person who feels as though when going to the source of whatever you are looking for, that source should have definitive answers that are both helpful and get you past your situation that led you to them in the first place. When the sink is clogged and Liquid Plumber have failed along with Uncle Anthony's help, you call in a plumber and you expect him to have the knowledge and tools to clear the pipe. Imagine you had to have five different plumbers coming to the house each one with a different view on the issue, all valid points of interest but not one leads to the release of the clog. Frustrating right?
You go to have your car worked on at the dealer expecting they have the most qualified person there to handle any situation that could ever plague your car, however after three visits and that frigging check engine light still popping on, you now have a team of qualified technicians, managers and even a zone representative involved all taking educated guess, no resolution all on your time of course, and you are still no further along. Again, frustrating?
Now lets step into perspective, over 10 years you have been seen by 38 different doctors, have had every concievable test imaginable with the exception of the autopsy, which they still havent figured out how to do one and have the patient still be able to go home after the procedure is complete, you find yourself with the answer as to what the problem is but the people that are trained to deal with it can not figure out how to deal with it. Now you've entered my world. I have already been discharged by my Neurologist once he realized he was dealing with ANS/NCS, he knew right away that required him to have to actually get his hands dirty and be a doctor for a change. No more throwing perscriptions at me and stating in my chart "Depression based symptoms, psychoscematic condition very possible", now do you think he went back and dictated "Fucked up, guy was spot on, really had issues, I feel like a douchebag for allowing him to suffer and additional year under my care". So my "team" of doctors now lie with three and one leading the way. My Internal Medicine doctor is the one who overall has the final say on where and when, with the Rheumatologist and Electrophysiologist just making recommendations for review. Overall however, still no definitive answer as to what I am actually dealing with in its entirety. The RA doctor had stated that with the interference of the ANS, his findings could be a false finding and treating me for AS without actually having it is damaging to the system. So hes puzzled as to what to do and has never in his practice ever had such a severe case of ANS manipulate blood values and major organs the way that mine has so he is extremely confident a high level EDS is to blame. OH GOODY! EDS for Christmas, exactly what I wanted.
So now I have three perscriptions for blood draws, all different crap which is amazing there is no overlap and again I go to be drained of numerous viles to press forward in this almost endless journey of ANS. I try to do as much research on line as I can to see if perhaps I can lend a hand seeing as we are all guessing now, why not let me take a few shots at it? So I came across the most remote condition imaginable and if I have this bastard, I am going to crap purple guppies. There are only like 200 cases ever reported in the US because its so rare but because of where I have been exposure wise, we now have to rule it out. Its part of the autoimmune issue which lies dormant in your bone marrow. Oddly enough I had found it prior to realizing that its more common in patients that test positive for HLA-B27 so that was for sure a red flag. I was in location to contract and I had the genetic failure, so we'll see if thats hiding in there somewhere.
So being OCD and one who believes in being rather organized (which is contestable by the appearance of my room and desk) I decided to go casket shopping. Morbid you would think right? Not really when it breaks right down to it. Dysautonomia in its most mild fashion is still considered a potential risk depending on its efforts to control certain functions of the body. When it becomes progressive, or should you be lucky enough to be able to check off almost 90% of the symptoms as having had or having (still looking into menstrual craps) you will find that most of the information all leads to the fact that its a "sudden death syndrome". Now I am already NCS which based on my tilt test the doctor has indicated that due to the oddities of my system, I could easily test POTS next go around just by seeing some of the variations in my report prior to passing out. So given the fact that my parents are in their late 60's and live 1300 miles away, for them to have to deal with having to arrange a funeral god forbid, while in the state of emotion they would be in, lets face it, makes sense to start looking around. Although when I got the 17K estimate for a "fair" send off, I began to think, is it possible to be buried at sea? "I'm sorry, did you say 17K"? Yep, not a typo. So that was all good news my first stop was already more than I wanted to spend, yippie. I am considering donating my body to science and afterwards have the remains packaged and sold in central park for the pidgeons. I am going to make those bastards MAD! Mad Pidgeon epidemic, yes I think I have lost my marbles.
And so my journey is still in full swing, I am still so far from the total truth, yet so close to grasping evidence of what is actually the cause of making my life a living hell. I am divorced so can't blame her anymore, lol. I just want to know as much as I can and how it will sort of play out later down the road. My friends have already been instructed to take me down should I start howling at the moon, not going for any wild Werewolf Syndrome here. Just want things to become clear and I dont mean like spending 350.00 on glasses that I only need to "focus" because at times my brain forgets how to adjust my eyes properly. When everything is in sync, I can see 20/10 with one eye and 20/15 with the other, and both can pretty easily achieve 20/20. But, give a day where things are off a bit upstairs, I'd love to know if I hit the 20/400 club, the tv is blurry. Thats some Chris Angel shit right there that my brain is able to do!
In closing always remember that its not what you do or say that create and define who you are, its how you present it. Optomist all the way to the end baby, making jokes, planning ahead being real. If you had told me 20 years ago this would happen to me, the sad reality was my drinking was so bad back then I didnt even think I'd see my 40's so I think I have beaten death already. I plan on doing it a bunch more too, stubborn Aries. Thanks for reading.
You go to have your car worked on at the dealer expecting they have the most qualified person there to handle any situation that could ever plague your car, however after three visits and that frigging check engine light still popping on, you now have a team of qualified technicians, managers and even a zone representative involved all taking educated guess, no resolution all on your time of course, and you are still no further along. Again, frustrating?
Now lets step into perspective, over 10 years you have been seen by 38 different doctors, have had every concievable test imaginable with the exception of the autopsy, which they still havent figured out how to do one and have the patient still be able to go home after the procedure is complete, you find yourself with the answer as to what the problem is but the people that are trained to deal with it can not figure out how to deal with it. Now you've entered my world. I have already been discharged by my Neurologist once he realized he was dealing with ANS/NCS, he knew right away that required him to have to actually get his hands dirty and be a doctor for a change. No more throwing perscriptions at me and stating in my chart "Depression based symptoms, psychoscematic condition very possible", now do you think he went back and dictated "Fucked up, guy was spot on, really had issues, I feel like a douchebag for allowing him to suffer and additional year under my care". So my "team" of doctors now lie with three and one leading the way. My Internal Medicine doctor is the one who overall has the final say on where and when, with the Rheumatologist and Electrophysiologist just making recommendations for review. Overall however, still no definitive answer as to what I am actually dealing with in its entirety. The RA doctor had stated that with the interference of the ANS, his findings could be a false finding and treating me for AS without actually having it is damaging to the system. So hes puzzled as to what to do and has never in his practice ever had such a severe case of ANS manipulate blood values and major organs the way that mine has so he is extremely confident a high level EDS is to blame. OH GOODY! EDS for Christmas, exactly what I wanted.
So now I have three perscriptions for blood draws, all different crap which is amazing there is no overlap and again I go to be drained of numerous viles to press forward in this almost endless journey of ANS. I try to do as much research on line as I can to see if perhaps I can lend a hand seeing as we are all guessing now, why not let me take a few shots at it? So I came across the most remote condition imaginable and if I have this bastard, I am going to crap purple guppies. There are only like 200 cases ever reported in the US because its so rare but because of where I have been exposure wise, we now have to rule it out. Its part of the autoimmune issue which lies dormant in your bone marrow. Oddly enough I had found it prior to realizing that its more common in patients that test positive for HLA-B27 so that was for sure a red flag. I was in location to contract and I had the genetic failure, so we'll see if thats hiding in there somewhere.
So being OCD and one who believes in being rather organized (which is contestable by the appearance of my room and desk) I decided to go casket shopping. Morbid you would think right? Not really when it breaks right down to it. Dysautonomia in its most mild fashion is still considered a potential risk depending on its efforts to control certain functions of the body. When it becomes progressive, or should you be lucky enough to be able to check off almost 90% of the symptoms as having had or having (still looking into menstrual craps) you will find that most of the information all leads to the fact that its a "sudden death syndrome". Now I am already NCS which based on my tilt test the doctor has indicated that due to the oddities of my system, I could easily test POTS next go around just by seeing some of the variations in my report prior to passing out. So given the fact that my parents are in their late 60's and live 1300 miles away, for them to have to deal with having to arrange a funeral god forbid, while in the state of emotion they would be in, lets face it, makes sense to start looking around. Although when I got the 17K estimate for a "fair" send off, I began to think, is it possible to be buried at sea? "I'm sorry, did you say 17K"? Yep, not a typo. So that was all good news my first stop was already more than I wanted to spend, yippie. I am considering donating my body to science and afterwards have the remains packaged and sold in central park for the pidgeons. I am going to make those bastards MAD! Mad Pidgeon epidemic, yes I think I have lost my marbles.
And so my journey is still in full swing, I am still so far from the total truth, yet so close to grasping evidence of what is actually the cause of making my life a living hell. I am divorced so can't blame her anymore, lol. I just want to know as much as I can and how it will sort of play out later down the road. My friends have already been instructed to take me down should I start howling at the moon, not going for any wild Werewolf Syndrome here. Just want things to become clear and I dont mean like spending 350.00 on glasses that I only need to "focus" because at times my brain forgets how to adjust my eyes properly. When everything is in sync, I can see 20/10 with one eye and 20/15 with the other, and both can pretty easily achieve 20/20. But, give a day where things are off a bit upstairs, I'd love to know if I hit the 20/400 club, the tv is blurry. Thats some Chris Angel shit right there that my brain is able to do!
In closing always remember that its not what you do or say that create and define who you are, its how you present it. Optomist all the way to the end baby, making jokes, planning ahead being real. If you had told me 20 years ago this would happen to me, the sad reality was my drinking was so bad back then I didnt even think I'd see my 40's so I think I have beaten death already. I plan on doing it a bunch more too, stubborn Aries. Thanks for reading.
Sunday, October 16, 2011
Finding The Origin
I have studied the dysautonomia information inside and out, over and over, up on side, down the other and trying to find that link to where this son of a bitch crossed my path is going to be the greatest find of all times. I have researched such remote things such as mercury poisioning, i.e. fillings from when I was a kid and even when we were younger in science class we played with mercury before they learned that it would cause children to grow six legs and crap.
I can remember swallowing countless ounces of Crest touthpaste as a small child, not even sure if they had warnings back then that flouride could cause your kids to glow at night. Lord knows it took them how many packs of cigarettes and countless deaths to realize that perhaps a warning or two on a cigarette pack might be helpful. So if I find a link to Crest, do I form a class action suit for all us ANS sufferers? Fights cavities, screws up central nervous system. Crest!
I came across a non related but interesting article about CSWS (Cerebral Salt-Wasting Syndrome) which I fit all the criteria to absolute perfection and I just so happen to have all my bloodwork & urine anaylsis spreadsheets for the past ten years ready for the discussion I will have with my doctor in regards to that.
I am always intrigued by all the information I come across pertaining to ANS disorders and when the complexity of NCS and an autoimmune disease are added to the mix, you have to almost get your MD just to be able to comprehend what the doctor is telling you. My exwife, although a very educated L&D nurse is so beyond clueless with all this, that talking to her about it is about as effective as talking to the 7-11 clerk as I purchase a soda, in one ear, out the other. Because she has a friend that is suspected of having EDS, although when I ask if it was RNP was positive in blood test or a genetic confirmation was done and by who so I could be referred to that doctor, it became way too much educated questioning to which my ex just stated that her Rheumotolgist advised her. I certainly hope my Rheumotolgist does that for me, certainly would save on alot of travel time, highly expensive testing and verification to determine EDS I-X. Now thats what I call service! Next time I see my EP doctor going to see if he can get me in for a teeth cleaning as well....Sarcasm, its the other white meat. Soooooooooooo anyway, leads up to the fact that the exwife is in denial, and perhaps I should define "denial".
You see, she spent the better part of six years convincing the doctors, herself, her family, our friends, her coworkers, the cats and any other asshole that would listen that all of my medical problems were in my head. So giving that some thought, imagine you are terrified of needles and cant even deal with the fact you have to go for a blood test, but due to all these medical issues that keep popping up, you are constantly getting stuck with needles, IV's and have even had two heart catherizations, yes I said two, all because this is a figment of your imagination. Now, when you finally get that diagnosis, you know, the one that everyone tried to convince you was all in your head, dont you just want to kick them so f@#king hard that your foot has to be surgically removed by a team of surgeons in Sweeden? Now, you might have some compassion if that same said person, I currently speak of the exwife with all the previous stupidity in her favor, were to perhaps step up like a normal human and perhaps apologize for being a Putana. Right? Wouldnt you just say, well just like all the doctors involved that she swayed into believing it was in my head, perhaps I owe her just a bit of compassion. Well not only did she not apologize but now is actually challenging the level of my ANS disorder. I know what you are thinking, moron right? Stubborn madre cooze? So determined to be right about something that she refuses to ever apologize for being 100% wrong. Even when she cheated on me, it was my fault she did that, lol. Yea, I introduced her to the online dickhead. Hes lucky hes still able to eat whole foods. But how could I blame him, shes the garbage that stepped out so he gets a pass.
So now the next chapter in my life is dealing with an ignorant exwife rather than an ignorant wife. The fact that I have a progressive form of ANS, which for us ANS savy peeps, means I possess another level of the syndrome that makes it that much more fun and dangerous. I exhibit Parkinson symptoms almost to a T and by the symptom chart alone, I am upwards of a level EDS V by symptom. I have random hematomas that form and actually cause bruising, its rather unique. So this rocket scientist I was married too wants to sit in with my doctor to challenge her diagnosis and if she fails to do that, then wants an exact TOD (Time of Death) so she can properly prepare the kids for this. Sorry if any kids are reading this but "IS SHE A FUCKING RETARD?" Terminal cancer patients given 3 months to live are walking around 5 years later but a cancer patient in remission has an infection dies in a week. HOW IN THE FUCK DOES A DOCTOR PREDICT A SUDDEN DEATH STYLE SYNDROME YOU DOPE? Un fucking real, you have no idea what kind of arguments have erupted from all of this. As I prepare for the worst, I have this boob asking me where, when and how as if I can predict it any better than the doctor. I have no freaking idea, I dont feel good, I am getting worse, I have an added autoimmune disease, yet I am still doing some things out in public from day to day. You get a freaking head cold and you are bed ridden for a day. Her father, the same way. A frigging cough and this makes him head for home yet he complains when someone calls in sick at his company. I told her, and anyone else in her family that wanted to walk a day in my shoes to step right up, I'll just give them ONLY the NCS and these fucking babies will be in the fetal position all week. I passed a 5 mm kidney stone with only two percocets, had that bastard in a jar to prove it too. So dont sit there passing judgment on me or pretend you have any clue what I am going through because even if I share ANS with someone else, we have totally different issues.
Inevitably I have death to look forward too, everyone else has to deal with her for the rest of their lifetimes. I'd do seven tours of hell drenched in gasoline in a heartbeat then to ever have to talk logically to her in any fashion. This is the most stubborn woman on the planet. I know my father reminds me I married her and I am going totally on record saying that once the I DO's were said, SHE CHANGED 1000%..... So whoever is single reading this, anyone who tells you that nothing changes after you get married, BULLSHIT!
So where was I, it seems I began to vent there just a smidge. Oh yea, all this ANS and where it may have entered my life. I also began to think lead paint, the old 1929 house I was born into had so many coats of lead paint on it that the doors wouldnt close tightly anymore. My grandmother had this belief that you had to paint every year so she did. I could chip away a good 1 inch thick slab of paint off any given wall it was so layered on there. I dont think it ever had time to cure from the first year application.
The house was also filled with asbestos covered pipes. Thats usually a cancer agent so not sure I will look into that but all these different things.
Then an oddity came up. I have to go over this one with doctor because of its rather odd introduction but very possible effects on me. Its called Brucellosis and its actually an animal disease BUT also a zoonotic which I found to be interesting. For those of you scratching your head and heading for Google or Bing, Brucellosis is an infectious disease that has alot of characteristics of Lupus and other autoimmune diseases and its extremely hard to detect. Left undiagnosed, its attacks liver, spleen, joints etc... Zoonotic just means that an animal can pass it to a human by direct fluid/mucus contact. You touch an infected animals eye, then accidentally rub yours its all on you now. Also through cuts and stuff like that. As a child and also as a young adult, I used to visit a friends house where in the back part of his ranch they had a slaughterhouse. As kids we'd go down there and "play" with the dead animals and their perspective "guts" etc... A breeding ground for every disease known to man. Having thought back, one of the lead butchers ended up with Lupus or Lymes disease, will have to further research, one daughter died of CLL (Chronic Lymphocytic Leukemia) and another daughter suffers from neurological issues. It has me intrigued now to think that perhaps something like this could have harbored itself for so long undetected and waited for me to become weak enough to attack. I am so open minded to all these medical oddities now especially the ANS and autoimmune.
So in closing, my best advice for anyone who is dealing with any type of syndrome, disease, disorder etc... to web surf with any stupid thought that crosses your mind and see if quite possibly it opens a corridor into an area of your medical life that is totally unexplored and has baffled doctors. It can't hurt to ask questions and if they say no, but later realize its a possible yes, not that "I told you so" makes it better, it just makes you feel as though you are in control of yourself to some degree. Its humbling to have to sign over power of attorney to your aging father knowing that its highly likely that you'll become incapcitated in the near future. I always worried about having to worry about what to do for my parents when they became too old to take care of themselves and now, the shoe is on the other foot. Very surreal. Thanks for reading.
I can remember swallowing countless ounces of Crest touthpaste as a small child, not even sure if they had warnings back then that flouride could cause your kids to glow at night. Lord knows it took them how many packs of cigarettes and countless deaths to realize that perhaps a warning or two on a cigarette pack might be helpful. So if I find a link to Crest, do I form a class action suit for all us ANS sufferers? Fights cavities, screws up central nervous system. Crest!
I came across a non related but interesting article about CSWS (Cerebral Salt-Wasting Syndrome) which I fit all the criteria to absolute perfection and I just so happen to have all my bloodwork & urine anaylsis spreadsheets for the past ten years ready for the discussion I will have with my doctor in regards to that.
I am always intrigued by all the information I come across pertaining to ANS disorders and when the complexity of NCS and an autoimmune disease are added to the mix, you have to almost get your MD just to be able to comprehend what the doctor is telling you. My exwife, although a very educated L&D nurse is so beyond clueless with all this, that talking to her about it is about as effective as talking to the 7-11 clerk as I purchase a soda, in one ear, out the other. Because she has a friend that is suspected of having EDS, although when I ask if it was RNP was positive in blood test or a genetic confirmation was done and by who so I could be referred to that doctor, it became way too much educated questioning to which my ex just stated that her Rheumotolgist advised her. I certainly hope my Rheumotolgist does that for me, certainly would save on alot of travel time, highly expensive testing and verification to determine EDS I-X. Now thats what I call service! Next time I see my EP doctor going to see if he can get me in for a teeth cleaning as well....Sarcasm, its the other white meat. Soooooooooooo anyway, leads up to the fact that the exwife is in denial, and perhaps I should define "denial".
You see, she spent the better part of six years convincing the doctors, herself, her family, our friends, her coworkers, the cats and any other asshole that would listen that all of my medical problems were in my head. So giving that some thought, imagine you are terrified of needles and cant even deal with the fact you have to go for a blood test, but due to all these medical issues that keep popping up, you are constantly getting stuck with needles, IV's and have even had two heart catherizations, yes I said two, all because this is a figment of your imagination. Now, when you finally get that diagnosis, you know, the one that everyone tried to convince you was all in your head, dont you just want to kick them so f@#king hard that your foot has to be surgically removed by a team of surgeons in Sweeden? Now, you might have some compassion if that same said person, I currently speak of the exwife with all the previous stupidity in her favor, were to perhaps step up like a normal human and perhaps apologize for being a Putana. Right? Wouldnt you just say, well just like all the doctors involved that she swayed into believing it was in my head, perhaps I owe her just a bit of compassion. Well not only did she not apologize but now is actually challenging the level of my ANS disorder. I know what you are thinking, moron right? Stubborn madre cooze? So determined to be right about something that she refuses to ever apologize for being 100% wrong. Even when she cheated on me, it was my fault she did that, lol. Yea, I introduced her to the online dickhead. Hes lucky hes still able to eat whole foods. But how could I blame him, shes the garbage that stepped out so he gets a pass.
So now the next chapter in my life is dealing with an ignorant exwife rather than an ignorant wife. The fact that I have a progressive form of ANS, which for us ANS savy peeps, means I possess another level of the syndrome that makes it that much more fun and dangerous. I exhibit Parkinson symptoms almost to a T and by the symptom chart alone, I am upwards of a level EDS V by symptom. I have random hematomas that form and actually cause bruising, its rather unique. So this rocket scientist I was married too wants to sit in with my doctor to challenge her diagnosis and if she fails to do that, then wants an exact TOD (Time of Death) so she can properly prepare the kids for this. Sorry if any kids are reading this but "IS SHE A FUCKING RETARD?" Terminal cancer patients given 3 months to live are walking around 5 years later but a cancer patient in remission has an infection dies in a week. HOW IN THE FUCK DOES A DOCTOR PREDICT A SUDDEN DEATH STYLE SYNDROME YOU DOPE? Un fucking real, you have no idea what kind of arguments have erupted from all of this. As I prepare for the worst, I have this boob asking me where, when and how as if I can predict it any better than the doctor. I have no freaking idea, I dont feel good, I am getting worse, I have an added autoimmune disease, yet I am still doing some things out in public from day to day. You get a freaking head cold and you are bed ridden for a day. Her father, the same way. A frigging cough and this makes him head for home yet he complains when someone calls in sick at his company. I told her, and anyone else in her family that wanted to walk a day in my shoes to step right up, I'll just give them ONLY the NCS and these fucking babies will be in the fetal position all week. I passed a 5 mm kidney stone with only two percocets, had that bastard in a jar to prove it too. So dont sit there passing judgment on me or pretend you have any clue what I am going through because even if I share ANS with someone else, we have totally different issues.
Inevitably I have death to look forward too, everyone else has to deal with her for the rest of their lifetimes. I'd do seven tours of hell drenched in gasoline in a heartbeat then to ever have to talk logically to her in any fashion. This is the most stubborn woman on the planet. I know my father reminds me I married her and I am going totally on record saying that once the I DO's were said, SHE CHANGED 1000%..... So whoever is single reading this, anyone who tells you that nothing changes after you get married, BULLSHIT!
So where was I, it seems I began to vent there just a smidge. Oh yea, all this ANS and where it may have entered my life. I also began to think lead paint, the old 1929 house I was born into had so many coats of lead paint on it that the doors wouldnt close tightly anymore. My grandmother had this belief that you had to paint every year so she did. I could chip away a good 1 inch thick slab of paint off any given wall it was so layered on there. I dont think it ever had time to cure from the first year application.
The house was also filled with asbestos covered pipes. Thats usually a cancer agent so not sure I will look into that but all these different things.
Then an oddity came up. I have to go over this one with doctor because of its rather odd introduction but very possible effects on me. Its called Brucellosis and its actually an animal disease BUT also a zoonotic which I found to be interesting. For those of you scratching your head and heading for Google or Bing, Brucellosis is an infectious disease that has alot of characteristics of Lupus and other autoimmune diseases and its extremely hard to detect. Left undiagnosed, its attacks liver, spleen, joints etc... Zoonotic just means that an animal can pass it to a human by direct fluid/mucus contact. You touch an infected animals eye, then accidentally rub yours its all on you now. Also through cuts and stuff like that. As a child and also as a young adult, I used to visit a friends house where in the back part of his ranch they had a slaughterhouse. As kids we'd go down there and "play" with the dead animals and their perspective "guts" etc... A breeding ground for every disease known to man. Having thought back, one of the lead butchers ended up with Lupus or Lymes disease, will have to further research, one daughter died of CLL (Chronic Lymphocytic Leukemia) and another daughter suffers from neurological issues. It has me intrigued now to think that perhaps something like this could have harbored itself for so long undetected and waited for me to become weak enough to attack. I am so open minded to all these medical oddities now especially the ANS and autoimmune.
So in closing, my best advice for anyone who is dealing with any type of syndrome, disease, disorder etc... to web surf with any stupid thought that crosses your mind and see if quite possibly it opens a corridor into an area of your medical life that is totally unexplored and has baffled doctors. It can't hurt to ask questions and if they say no, but later realize its a possible yes, not that "I told you so" makes it better, it just makes you feel as though you are in control of yourself to some degree. Its humbling to have to sign over power of attorney to your aging father knowing that its highly likely that you'll become incapcitated in the near future. I always worried about having to worry about what to do for my parents when they became too old to take care of themselves and now, the shoe is on the other foot. Very surreal. Thanks for reading.
Tuesday, October 4, 2011
Finally Someone Is Listening
I spent the better part of ten years telling people that things were not right with me and after tests were run and negative results were produced, of course on more than one occasion, I began to lose credibility. How many times can a person cry wolf you ask? Well historically, ANYONE who knew me, I'd have to have a limb falling off to even see a doctor in the first place so that was sign number one that perhaps I wasnt doing all this for attention. Sign number two, I am SEVERELY, DESPERATELY, OVERLY, ABOVE & BEYOND, terrified of needles, even getting a simple glucose test from a finger prick you'd swear they were asking to take my spleen while I was lying awake unmedicated. So again, every hospital visit and a large majority of my doctor visits involved blood draws, injections, IV's, operations, even heart catherizations, who the f@#k fakes symptoms to have two of those done????? So as I sit here reading over ten years of medical history, comparing all of my outragagous bloodwork results and reviewing doctors comments, I am saddened to see that the one person to whom I thought was my best friend, my wife/soon to be exwife, had manipulated the doctors to believe that it was indeed either psychosomatic, depression/anxiety or some other deep rooted psychological episode that caused physical distress. Each time she had done this, the doctors were swayed from a course of medical study and the focus was drawn away to a complete dead end, meeting with therapists. I hadnt realized until reading back into these medical files and notes that I was actually unintentionally sabatoged by the very person who was seeking the answers along with me to my suspicious and extremely random medical issues. I was so close to possibly being diagnosed at one point in 2004 but she managed to sidetrack the doctor and the test that he was going to suggest and proceed with, the very one that I failed in 2011 that confirmed NCS was detoured for a visit with a psychotherapist. I never really focused on the timeline until now as I read all of this and as I face the final stages of our divorce proceedings, I can't help but wonder what could have been if I had been successfully diagnosed back then.
My issues in our marriage, ALL of them, each and every complaint my wife had, all answered when I was diagnosed with ANS, it was as if a huge burden was lifted from my shoulders because I just didnt have any answers for her. I knew I wasnt doing my share to make things right but I couldnt explain what it was that was causing it to go so drastically wrong either. To hear over and over "its in your mind" wasnt helping the situation, I refused to believe it, I knew something was drastically wrong but I hit roadblock after roadblock. The divorce introduction was the final blow, my body just attacked me and its said to say that the divorce was actually what led to my being diagnosed, who wants to find out that way? Now as I sit down talking to my soon to be ex about all the issues that are now explainable, she has regrets of what she did to end our marriage, not apologetic, just regrets and extreme emotion. All I can really say is "do you believe me now?" Its not an "I told you so" moment, no one is victorious here, I lost my wife/friend/marriage and she lost the ability to be the victim in this divorce which I explained all along even long before the diagnosis, the kids are the only victims. All I wanted was for someone to figure out what was wrong with me and for the people around me who I thought loved me, to believe in me.
I face each new chapter of this syndrome alone now and I selectively share details with her that may pertain to our son who is soon to begin his journey of early diagnosis in the ANS world. My new battles with Autoimmune disease has been a much more difficult transformation. Between the already disabling complications of the ANS syndrome I now have to contend with the unknown Autoimmune disorder. I am awaiting the results of the blood tests from my three days of blood draws and its said to think that I am praying for Lupus, but over all with the profile that I failed thus far, Lupus will be the best case scenario.
I understand alot more about ANS then most people and oddly enough, even some medical professionals are confused by it and I have to offer my knowledge to them as well. When you are plagued with something you almost have to become an expert, its the only true way you can ensure that everything your lifestyle offers will manage to coexist with your medical limitations.
I have ordered my medical alert bracelets, just another step in accepting the enevitable reality that this isnt going away. Out of anyone in my family however, I am the only one who can truly handle it and remain focused on moving along whatever the outcome. I deal with things much differently than most and constantly making jokes about it and even references about coffin shopping rather than car shopping makes me laugh. I have a "come and get me attitude", I already made my peace with God so all is good there.
Its nice to go to my doctor now with new symptoms and have her undivided attention, its no longer viewed as "here we go again" its a whole new chapter of whats to come next. With new things happening everyday, I know I am supposed to keep a journal and all but the saying "Lifes too short" has suddenly become a reality and I just dont have the time anymore for what I feel are silly things that I may be able to recall when I see the doctor. I'd rather focus on my kids and how they are doing or what we will do next time I see them. My son knows somethings wrong with daddy, I can't hide my physical limitations from him anymore, I used to be able too but hes too smart so I just need to do the best I can and hope that I can keep it up a long time.
In closing I think its safe to say that anyone who feels that a spouse, loved one, family member isnt really hearing what you are saying when you indicate you are in pain and perhaps they are even suggesting you are over dramatizing it or inventing it, in your heart if you truly are symptomatic, share with them all of the blog entries that discuss the deterioration of relationships due to lack of TRUE support. I have come accross so many people that have these issues and not just people with severe issues like mine, others with a more simplistic diagnosis of just Fibromyalgia. ANS sufferers also have Fibro so we can relate to those days where we have just those symptoms and they should never be discounted. Chronic illness is something you can never discount or deny unless you have walked our shoes. Thank you for reading
My issues in our marriage, ALL of them, each and every complaint my wife had, all answered when I was diagnosed with ANS, it was as if a huge burden was lifted from my shoulders because I just didnt have any answers for her. I knew I wasnt doing my share to make things right but I couldnt explain what it was that was causing it to go so drastically wrong either. To hear over and over "its in your mind" wasnt helping the situation, I refused to believe it, I knew something was drastically wrong but I hit roadblock after roadblock. The divorce introduction was the final blow, my body just attacked me and its said to say that the divorce was actually what led to my being diagnosed, who wants to find out that way? Now as I sit down talking to my soon to be ex about all the issues that are now explainable, she has regrets of what she did to end our marriage, not apologetic, just regrets and extreme emotion. All I can really say is "do you believe me now?" Its not an "I told you so" moment, no one is victorious here, I lost my wife/friend/marriage and she lost the ability to be the victim in this divorce which I explained all along even long before the diagnosis, the kids are the only victims. All I wanted was for someone to figure out what was wrong with me and for the people around me who I thought loved me, to believe in me.
I face each new chapter of this syndrome alone now and I selectively share details with her that may pertain to our son who is soon to begin his journey of early diagnosis in the ANS world. My new battles with Autoimmune disease has been a much more difficult transformation. Between the already disabling complications of the ANS syndrome I now have to contend with the unknown Autoimmune disorder. I am awaiting the results of the blood tests from my three days of blood draws and its said to think that I am praying for Lupus, but over all with the profile that I failed thus far, Lupus will be the best case scenario.
I understand alot more about ANS then most people and oddly enough, even some medical professionals are confused by it and I have to offer my knowledge to them as well. When you are plagued with something you almost have to become an expert, its the only true way you can ensure that everything your lifestyle offers will manage to coexist with your medical limitations.
I have ordered my medical alert bracelets, just another step in accepting the enevitable reality that this isnt going away. Out of anyone in my family however, I am the only one who can truly handle it and remain focused on moving along whatever the outcome. I deal with things much differently than most and constantly making jokes about it and even references about coffin shopping rather than car shopping makes me laugh. I have a "come and get me attitude", I already made my peace with God so all is good there.
Its nice to go to my doctor now with new symptoms and have her undivided attention, its no longer viewed as "here we go again" its a whole new chapter of whats to come next. With new things happening everyday, I know I am supposed to keep a journal and all but the saying "Lifes too short" has suddenly become a reality and I just dont have the time anymore for what I feel are silly things that I may be able to recall when I see the doctor. I'd rather focus on my kids and how they are doing or what we will do next time I see them. My son knows somethings wrong with daddy, I can't hide my physical limitations from him anymore, I used to be able too but hes too smart so I just need to do the best I can and hope that I can keep it up a long time.
In closing I think its safe to say that anyone who feels that a spouse, loved one, family member isnt really hearing what you are saying when you indicate you are in pain and perhaps they are even suggesting you are over dramatizing it or inventing it, in your heart if you truly are symptomatic, share with them all of the blog entries that discuss the deterioration of relationships due to lack of TRUE support. I have come accross so many people that have these issues and not just people with severe issues like mine, others with a more simplistic diagnosis of just Fibromyalgia. ANS sufferers also have Fibro so we can relate to those days where we have just those symptoms and they should never be discounted. Chronic illness is something you can never discount or deny unless you have walked our shoes. Thank you for reading
Tuesday, September 27, 2011
Trying To Dodge The Punches
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.
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.
Thursday, September 15, 2011
Informing The Exwife Of My Condition
Throughout the past 10 years, all the testing that has been done to me has come back for the most part negative, it had just enough shades of concern to further investigate but overall no major concern on any doctors part that they felt it was a major issue. Along with this, they began to feel it was physchosomatic and I had been seen by three different therapists to evaluate that avenue of diagnosis as well. Of course that theory was also put to rest and again we were right back at square one.
As time progressed however, my wife at the time began to put full stock into the fact that perhaps it was in my mind afterall and they just couldnt unlock the link. Shes an RN and certainly given the tremendous medical workups I had throughout the years, I could see her having a thought about that but to actually take full confidence in that theory over what I was telling her began to slowly deteriorate the bond that we once shared. If the one person who at one time claimed to be your best friend above all else forgetting the bond of marriage and all that goes with it has now lost faith in everything you express is a cause of concern with your health, what do you really share with this person? It became a medical slander and even with one facet of our personal issues finally tested and confirmed by our family doctor, she joined me for the results of his findings. He explained the situation to her, I was overly relieved to realize it was a medical issue because I had no explaination for it otherwise. She had a Q & A with the doctor and found out what the solution would be for possible theraputic value and correction, got every detail down verbatim and I was confident as we left the office we would have a newer understanding that when I say there is something wrong with me medically not to doubt this or sabotage me with mental slander. We werent a minute down the hallway when she indicated that it was good that the doctor found the root cause of my medical issue but she still felt it was in my head. There is not good response to that, other than to mark that date down as the date to which the marriage begins to crumble, one spouse no longer believes in the other so whats the point?
Many more events happen over the years & hospital visits almost become routine and somewhat comical within the immediate family structure. I always bounced back quickly no matter what they did to me with the exception of the Toxic Encepolapathy which was a brutal 7 to 8 week recovery just to be human again. I still have ongoing issues from that nightmare. I've lost so much during that period, have people that talk to me that I dont even recognize but claim they know me for many years, have difficulty with very bright lights again, no picnic whatsoever.
Any medical issues suffered in a relationship are stressful, theres no arguing that at all. When its frequent and at times the ailments seem as though they are going to be possibly life threatening, its a time that adds alot of emotional stress to the marriage especially when there isnt a break from it. Thats never been argued, nor has it ever been discounted. However, when it becomes the source of pity and the focus is all about the one dealing with the spouse in the hospital rather than the spouse thats having all the major issues and countless tests and procedures done, thats when its tilted in the direction of looking for a way out. When you take your vows and you say the words "in sickness and in health" its not just words to fill up time at the alter its supposed to mean something. Not in this case though. As I was reminded in the earlier part of our separation, the fact that we were married in a church against her wishes, none of what the priest said mattered, essentially meaning we werent married before god, we were married before family and should something come up that disrupts the marriage such as health, its automatically void. I apparently didnt perceive the same meaning in those words and had the tables been turned, I'd still be there. I was once ridiculed for flying up to NJ overnight to see my grandmother in the hospital. I heard weakness in her voice and flew out Saturday morning, saw her and flew back home on Sunday evening. Its what you do when you love someone unconditionally.
A few days before last overnight hospital stay, my mother in law had a surprise birthday party of about 16 or so couples. At one point, she went around and said something about each and every person there, either how they met or how they impact her life. She worked her way to my wife and said all the things a mother would say about a daughter she was so proud of and I was sitting right next to my wife however, my mother in law moved her attention across the table to other couples in front of me. She made her way around until she spoke about the last person who was sitting on my other side and then she was reminded that she forgot her husband. My father in law had been rather stand offish in the past few weeks preceeding this party so that along with this obvious move to block me out it was an indication something was up. I didnt say anything and nothing was said.
The next day we ended up at my inlaws house where without any comment whatsoever her first order of business was to apologize for her "accidental" slip up of not recognizing me at the table for comment. She couldnt understand how it happened other than to say she didnt remember much due to the intake of wine, so she was extremely apologetic and again blamed the wine for allowing her to not only do that to me but allow her to forget most of the evening. I've studied people my whole life and when someone is blowing smoke it takes me about 1 nano second to detect it. So I figured shes indicated that she cant remember anything at all about that time period due to the wine, made sure to repeat it so I merely began to say the opening words she said to the person across from me, the person that she selected after my wife in order to bypass me and verbatim she recited everything she said about them at the party. Perhaps the people they deal with normally are idiots, I am not.
That weekend I was in the hospital for a five day stay and not that it was abnormal for me to be in the hospital, what was missing was my wife. In all the times prior she had never missed coming to the hospital to get with the doctor, she had even taken off of work, or son was in school and the baby could easily go to day care. A few days before, mother in law has her party mishap and now wife is MIA from hospital. When you are in the hospital with poor TV choices, you have alot of time to evaluate situations and this was one that I began to see as an issue.
Sure as God made little green apples, the day after I left the hospital and returned for outpatient IV meds, I received a text from my wife that the marriage was over. I had just seen her in person 8 minutes before that but with todays technology, who does anything in person anymore. My suspicions were confirmed, something indeed was up and her parents were aware of it for however long.
The divorce is actually what led to my diagnosis for the ANS disorder. The overload of stress from the initial shock, the fact that I never had a chance to recover from the hospital stay, the eviction process that was presented as a ploy to remove me from the home & my children, finding out about the other men & the singles dating site, the childrens reaction to the separation, my wifes annoying attorney, trying to find a place to live, no job/no money, I guess it was enough to finally set the body in motion for a full symptomatic attack in 2011 which in the end I am blessed with the ANS diagnosis.
I was certainly not at all interested in telling my soon to be exwife any of my medical findings due to the fact that she signed off on our marriage by her choice, but a comment she made to me that I realized how little she thought of me now, she clearly stated that if she owned a gun god knows what she'd do with it. This was said at a very awkward time in our separation concerning the kids. By things she said via phone and text she put me in one of the most awkward positions of my life, she was actually debating when I would see my children again depending on if she approved my home or not. Attorneys had to step in and she didnt see our youngest child until a parenting plan was in place which caused some delay. From a time standpoint it was no different then the amount of time she electively took when she had a weekend party with her friends from work, dropping Gia off at day care 6:15am Friday morning & she didnt see her again until Sunday almost noon and it would have been later had I not embarrassed her into coming home sooner. Its ok to stay away from your child electively for any time selected but the same time period told you cant see them is different.
The true reason for even inviting her into that spectrum of my life now is due to the fact that its possible our son my be affected by the same ANS disorder but obviously a much lighter variation. If caught in the early stages, maintaining it and controling it are a much more successful task and his prognosis for future is more appealing. We may not be married anymore but we are bound by our children therefore its always got to be in the best interest of the children that we move forward from this point on.
Although my wife was shocked and seemingly upset, I think shes somewhat relieved shes no longer with me knowing my future is rather grimm. My symptoms are getting worse and new ones are appearing daily which make this an ever evolving mess that I must sort out in order to survive.
In closing its best to say that when someone quotes the infamous words "life is short" seriously contemplate that as gospel. You just never know when you get your calling card. Thanks for reading
As time progressed however, my wife at the time began to put full stock into the fact that perhaps it was in my mind afterall and they just couldnt unlock the link. Shes an RN and certainly given the tremendous medical workups I had throughout the years, I could see her having a thought about that but to actually take full confidence in that theory over what I was telling her began to slowly deteriorate the bond that we once shared. If the one person who at one time claimed to be your best friend above all else forgetting the bond of marriage and all that goes with it has now lost faith in everything you express is a cause of concern with your health, what do you really share with this person? It became a medical slander and even with one facet of our personal issues finally tested and confirmed by our family doctor, she joined me for the results of his findings. He explained the situation to her, I was overly relieved to realize it was a medical issue because I had no explaination for it otherwise. She had a Q & A with the doctor and found out what the solution would be for possible theraputic value and correction, got every detail down verbatim and I was confident as we left the office we would have a newer understanding that when I say there is something wrong with me medically not to doubt this or sabotage me with mental slander. We werent a minute down the hallway when she indicated that it was good that the doctor found the root cause of my medical issue but she still felt it was in my head. There is not good response to that, other than to mark that date down as the date to which the marriage begins to crumble, one spouse no longer believes in the other so whats the point?
Many more events happen over the years & hospital visits almost become routine and somewhat comical within the immediate family structure. I always bounced back quickly no matter what they did to me with the exception of the Toxic Encepolapathy which was a brutal 7 to 8 week recovery just to be human again. I still have ongoing issues from that nightmare. I've lost so much during that period, have people that talk to me that I dont even recognize but claim they know me for many years, have difficulty with very bright lights again, no picnic whatsoever.
Any medical issues suffered in a relationship are stressful, theres no arguing that at all. When its frequent and at times the ailments seem as though they are going to be possibly life threatening, its a time that adds alot of emotional stress to the marriage especially when there isnt a break from it. Thats never been argued, nor has it ever been discounted. However, when it becomes the source of pity and the focus is all about the one dealing with the spouse in the hospital rather than the spouse thats having all the major issues and countless tests and procedures done, thats when its tilted in the direction of looking for a way out. When you take your vows and you say the words "in sickness and in health" its not just words to fill up time at the alter its supposed to mean something. Not in this case though. As I was reminded in the earlier part of our separation, the fact that we were married in a church against her wishes, none of what the priest said mattered, essentially meaning we werent married before god, we were married before family and should something come up that disrupts the marriage such as health, its automatically void. I apparently didnt perceive the same meaning in those words and had the tables been turned, I'd still be there. I was once ridiculed for flying up to NJ overnight to see my grandmother in the hospital. I heard weakness in her voice and flew out Saturday morning, saw her and flew back home on Sunday evening. Its what you do when you love someone unconditionally.
A few days before last overnight hospital stay, my mother in law had a surprise birthday party of about 16 or so couples. At one point, she went around and said something about each and every person there, either how they met or how they impact her life. She worked her way to my wife and said all the things a mother would say about a daughter she was so proud of and I was sitting right next to my wife however, my mother in law moved her attention across the table to other couples in front of me. She made her way around until she spoke about the last person who was sitting on my other side and then she was reminded that she forgot her husband. My father in law had been rather stand offish in the past few weeks preceeding this party so that along with this obvious move to block me out it was an indication something was up. I didnt say anything and nothing was said.
The next day we ended up at my inlaws house where without any comment whatsoever her first order of business was to apologize for her "accidental" slip up of not recognizing me at the table for comment. She couldnt understand how it happened other than to say she didnt remember much due to the intake of wine, so she was extremely apologetic and again blamed the wine for allowing her to not only do that to me but allow her to forget most of the evening. I've studied people my whole life and when someone is blowing smoke it takes me about 1 nano second to detect it. So I figured shes indicated that she cant remember anything at all about that time period due to the wine, made sure to repeat it so I merely began to say the opening words she said to the person across from me, the person that she selected after my wife in order to bypass me and verbatim she recited everything she said about them at the party. Perhaps the people they deal with normally are idiots, I am not.
That weekend I was in the hospital for a five day stay and not that it was abnormal for me to be in the hospital, what was missing was my wife. In all the times prior she had never missed coming to the hospital to get with the doctor, she had even taken off of work, or son was in school and the baby could easily go to day care. A few days before, mother in law has her party mishap and now wife is MIA from hospital. When you are in the hospital with poor TV choices, you have alot of time to evaluate situations and this was one that I began to see as an issue.
Sure as God made little green apples, the day after I left the hospital and returned for outpatient IV meds, I received a text from my wife that the marriage was over. I had just seen her in person 8 minutes before that but with todays technology, who does anything in person anymore. My suspicions were confirmed, something indeed was up and her parents were aware of it for however long.
The divorce is actually what led to my diagnosis for the ANS disorder. The overload of stress from the initial shock, the fact that I never had a chance to recover from the hospital stay, the eviction process that was presented as a ploy to remove me from the home & my children, finding out about the other men & the singles dating site, the childrens reaction to the separation, my wifes annoying attorney, trying to find a place to live, no job/no money, I guess it was enough to finally set the body in motion for a full symptomatic attack in 2011 which in the end I am blessed with the ANS diagnosis.
I was certainly not at all interested in telling my soon to be exwife any of my medical findings due to the fact that she signed off on our marriage by her choice, but a comment she made to me that I realized how little she thought of me now, she clearly stated that if she owned a gun god knows what she'd do with it. This was said at a very awkward time in our separation concerning the kids. By things she said via phone and text she put me in one of the most awkward positions of my life, she was actually debating when I would see my children again depending on if she approved my home or not. Attorneys had to step in and she didnt see our youngest child until a parenting plan was in place which caused some delay. From a time standpoint it was no different then the amount of time she electively took when she had a weekend party with her friends from work, dropping Gia off at day care 6:15am Friday morning & she didnt see her again until Sunday almost noon and it would have been later had I not embarrassed her into coming home sooner. Its ok to stay away from your child electively for any time selected but the same time period told you cant see them is different.
The true reason for even inviting her into that spectrum of my life now is due to the fact that its possible our son my be affected by the same ANS disorder but obviously a much lighter variation. If caught in the early stages, maintaining it and controling it are a much more successful task and his prognosis for future is more appealing. We may not be married anymore but we are bound by our children therefore its always got to be in the best interest of the children that we move forward from this point on.
Although my wife was shocked and seemingly upset, I think shes somewhat relieved shes no longer with me knowing my future is rather grimm. My symptoms are getting worse and new ones are appearing daily which make this an ever evolving mess that I must sort out in order to survive.
In closing its best to say that when someone quotes the infamous words "life is short" seriously contemplate that as gospel. You just never know when you get your calling card. Thanks for reading
Tuesday, September 6, 2011
Preparing For The Neurologist
In the past, my visits to the Neurologist were always just to brush up on where I was at with medications, cover some symptom updates, evaluate the overall quality and benefit of what the medications were doing for me and I'd be on my way in about 4 minutes and $214.00 lighter in the pocket. However, this coming Monday this will not be the case. My Neurologist will essentially be blindsided by a tremendous amount of events, procedures, medications administered, diagnosis rendered all of which hes essentially been out of the loop on. I have to assume that the other doctors that have taken lead in all of this have been including him in everything thats transpired since my last offical visit with him but who really knows. The last notes my family doctor sent to his office were ignored & my family doctor took it upon herself to order the necessary tests that should have been the Neurologists responsibility.
When I was first seen by him, he had ordered a battery of tests & other doctors to evaluate my situation, this was due to my toxic encepalopathy, most of which is a blur but I have the records that I have glanced at and I am actually shocked at all the stuff that was done to me with no real results found. Surprised, no but the fact that I really didnt recall all these visits, yes. As time went on and it seemed he was becoming more frustrated with the results of medications he was giving me as if they were miracle drugs and I should magically snap out of the funk I was in, he then started to have my wife involved in my visits which only complicated things for the worse. I no longer existed in the room, I was being treated like I was a 4 year old and my wife tells the doctor I was depressed which was music to his ears, a way to pass the buck to another doctor. I chose not to defend it, why you ask? Well the first thing that further proves the stupidity of others is denial of what they suggest. I knew I wasnt depressed, its was my wife who was being treated for depression and she wanted someone else to come aboard. I knew whatever physcologist I saw would easily see it wasnt depression. This is obviously where the Neurologist dropped the ball a bit. He looked for that quick escape rather than studying my medical history which had all the answers right there for him to see, ANS disorder is a Neuro disorder, all those wall charts in his exam rooms might as well have been pictures of ducks throwing hand grenades, they obviously werent there to value any logical thinking for the office.
So I went to the shrink and after a handful of visits, he said without hesitation, no depression whatsoever and didnt need to see me unless I wanted to see him. I asked why I would want to see him if I didnt have depression issues and he just said he was intrigued by the fact that I had so much happen to me and I wasnt depressed, he was so curious as to what truly made me tick. I thanked him of course and told him to buy the book and we both laughed.
I returned to the Neurologist after all those visits, not to rub it in or be a smart ass but to inform him that I had done exactly what he had requested & when he heard it wasnt depression, he was almost kind of angry with that. He brought up a Neuro/Shrink test I had taken which all I remember is being dropped off for many hours at an office and they kept asking me crap. He said that my results came back as manipulative. Ok, so what does that mean? I had this test done, dont recall taking it, found out it was a bullet multiple choice test so I can only imagine what I chose as answers if I cant even recall the fact I held a pencil to take the test. I had to question him at this point only because of the fact I didnt even remember the doctor that I saw for the test so how is it possible to have this test as gospel when the total visit is a blur? He decided to retest me which I was all for. Oddly enough, my positive response to being retested and willingness to get it set up immediately ended up being a dead end. The referral never happened because it became apparent he knew I was pulling anyones chain here, I was truly screwed up and all I wanted was help which he was running out of answers.
I saw him after being in the hospital with the staph infection & he was aware of the upcoming lithotripsy, cant recall if he knew about the abdominal issues but he will be briefed when I arrive on the 12th. I think what I am most concerend with now is the doctor ego issues. When the diagnosis is floating in front of everyone and someone finally grasps it but not the doctor that should have been the one to notice it, now I have to wonder if he'll work with the others to do his part to combat my issues and further test me for the other linking syndromes or will he go against the other doctors diagnosis and create a total shit storm for me which he did in my personal injury case? This is the concern I now have for a doctor that I once saw as my saving grace, I now view him as 50/50 and I have my concerns. I know that I cant function without the meds hes prescribing so his end of the care is working to help me function but not at 100%. However, now knowing what everyone is up against, I dont think any doctor on my "team" can expect 100%, we have to be happy with 80% its just that complicated an issue. When I go fully symptomatic, it over rides all medications so what chance do I have of being 100%? I dont really think anyone can figure out how that happens, I live it and it completely baffles the crap out of me.
I dont know how many other specialits will be involved before this is all over but I will say that its an education beyond belief. I never imagined I would have such complications in my life that would affect me to this extent & essentially leave me damaged to where its a struggle to leave the house some days. You read about stuff like this and in your mind you have sympathy but you also have that thought of "geez, get over it man, stop over reacting". Well for anyone I ever expressed those thoughts too in the past, I am beyond sorry until you walk in another persons shoes, you can't make a definitve statement about them.
In closing I have to say that given a choice somedays between life and death, there are days so bad that death looks promising, thats how real this is. The pain is so intense and so relentless that it causes you to feel as though tomorrow may be worse & who wants that? All it takes for me to deal with it another day is thinking about my children and how much they mean to me. The pain makes me irritable and angry sometimes which sadly comes out in front of the kids, not at them, its usually some ridiculous household item that decides to cause me havoc but nevertheless, if I could manage to keep that under wraps, I'd say thats the only thing that truly bothers me about this whole mess. You have to stay positive always. Thanks for reading.
When I was first seen by him, he had ordered a battery of tests & other doctors to evaluate my situation, this was due to my toxic encepalopathy, most of which is a blur but I have the records that I have glanced at and I am actually shocked at all the stuff that was done to me with no real results found. Surprised, no but the fact that I really didnt recall all these visits, yes. As time went on and it seemed he was becoming more frustrated with the results of medications he was giving me as if they were miracle drugs and I should magically snap out of the funk I was in, he then started to have my wife involved in my visits which only complicated things for the worse. I no longer existed in the room, I was being treated like I was a 4 year old and my wife tells the doctor I was depressed which was music to his ears, a way to pass the buck to another doctor. I chose not to defend it, why you ask? Well the first thing that further proves the stupidity of others is denial of what they suggest. I knew I wasnt depressed, its was my wife who was being treated for depression and she wanted someone else to come aboard. I knew whatever physcologist I saw would easily see it wasnt depression. This is obviously where the Neurologist dropped the ball a bit. He looked for that quick escape rather than studying my medical history which had all the answers right there for him to see, ANS disorder is a Neuro disorder, all those wall charts in his exam rooms might as well have been pictures of ducks throwing hand grenades, they obviously werent there to value any logical thinking for the office.
So I went to the shrink and after a handful of visits, he said without hesitation, no depression whatsoever and didnt need to see me unless I wanted to see him. I asked why I would want to see him if I didnt have depression issues and he just said he was intrigued by the fact that I had so much happen to me and I wasnt depressed, he was so curious as to what truly made me tick. I thanked him of course and told him to buy the book and we both laughed.
I returned to the Neurologist after all those visits, not to rub it in or be a smart ass but to inform him that I had done exactly what he had requested & when he heard it wasnt depression, he was almost kind of angry with that. He brought up a Neuro/Shrink test I had taken which all I remember is being dropped off for many hours at an office and they kept asking me crap. He said that my results came back as manipulative. Ok, so what does that mean? I had this test done, dont recall taking it, found out it was a bullet multiple choice test so I can only imagine what I chose as answers if I cant even recall the fact I held a pencil to take the test. I had to question him at this point only because of the fact I didnt even remember the doctor that I saw for the test so how is it possible to have this test as gospel when the total visit is a blur? He decided to retest me which I was all for. Oddly enough, my positive response to being retested and willingness to get it set up immediately ended up being a dead end. The referral never happened because it became apparent he knew I was pulling anyones chain here, I was truly screwed up and all I wanted was help which he was running out of answers.
I saw him after being in the hospital with the staph infection & he was aware of the upcoming lithotripsy, cant recall if he knew about the abdominal issues but he will be briefed when I arrive on the 12th. I think what I am most concerend with now is the doctor ego issues. When the diagnosis is floating in front of everyone and someone finally grasps it but not the doctor that should have been the one to notice it, now I have to wonder if he'll work with the others to do his part to combat my issues and further test me for the other linking syndromes or will he go against the other doctors diagnosis and create a total shit storm for me which he did in my personal injury case? This is the concern I now have for a doctor that I once saw as my saving grace, I now view him as 50/50 and I have my concerns. I know that I cant function without the meds hes prescribing so his end of the care is working to help me function but not at 100%. However, now knowing what everyone is up against, I dont think any doctor on my "team" can expect 100%, we have to be happy with 80% its just that complicated an issue. When I go fully symptomatic, it over rides all medications so what chance do I have of being 100%? I dont really think anyone can figure out how that happens, I live it and it completely baffles the crap out of me.
I dont know how many other specialits will be involved before this is all over but I will say that its an education beyond belief. I never imagined I would have such complications in my life that would affect me to this extent & essentially leave me damaged to where its a struggle to leave the house some days. You read about stuff like this and in your mind you have sympathy but you also have that thought of "geez, get over it man, stop over reacting". Well for anyone I ever expressed those thoughts too in the past, I am beyond sorry until you walk in another persons shoes, you can't make a definitve statement about them.
In closing I have to say that given a choice somedays between life and death, there are days so bad that death looks promising, thats how real this is. The pain is so intense and so relentless that it causes you to feel as though tomorrow may be worse & who wants that? All it takes for me to deal with it another day is thinking about my children and how much they mean to me. The pain makes me irritable and angry sometimes which sadly comes out in front of the kids, not at them, its usually some ridiculous household item that decides to cause me havoc but nevertheless, if I could manage to keep that under wraps, I'd say thats the only thing that truly bothers me about this whole mess. You have to stay positive always. Thanks for reading.
Friday, September 2, 2011
The Annoying Symptoms List
When you get a splinter, a cut, break a bone or sprain something, there is a known level symptoms to expect from the injury with the only surprise being the location as to where it occured. This is something that is annoying to most, interferes with daily activities but for the most part we get better each day and our lives get back on track with nothing more than a story to tell someone down the road. Now picture if you had no idea what your symptom of the day was going to be and each day you woke up it was completely different, some of the symptoms being so draining to the body that you feel as though you are totally unable to function at all for the day. That would suck right? Well thats the world of alot of ANS disorders such as, Parkinsons, Chronic Fatigue Syndrome, Fibromyalgia, Neoropathys etc... just to name a few off my head. All of which have the symptoms from hell which cause the affected to wonder why they were chosen to bear the grief of such a devastating syndrome, only having a few good days a month but even those good days are trade offs they have to deal with. Symptoms are still there just tolerable for that day so what happens? You try and go back to the life you once remembered prior to all the pain and pills but the next four days you spend absolutely miserable wishing someone would push you off a cliff so you could end it all. The overall pain of over doing it can't even be explained on the normal 1-10 pain chart because anyone whos suffered the syndromes knows that days of a 9-10 happen, then you over do it, you wish to God you had that 9-10 back again. When its said you wouldnt wish it on your worst enemy, its truly an understatement, no person should have to suffer like this ever.
With all that being said and you sit there pondering all those people in your life that might have one of those syndromes I mentioned & you are feeling bad that you might have spoke ill of them behind their back because you felt they were dramatically adding to their issue, wrap your mind around this concept. Imagine someone who has the pleasure of suffering the symptoms of all the syndromes combined. Yep, a person who can totally relate to someone who just has Parkinsons & another person who just has Fibromyalgia, or another who just has Chronic Fatigue Syndrome. So as each of these persons battle their one issue and it seems as though the world is ending for them, trust them, it is with some of the harshness of the symptoms of each seperate syndrome, along comes someone with Dysautonomia. The mother of Satan without doubt. I can talk to any person within the realm of a CNS, ANS disorder and be able to relate to exactly what they are going through because I have a taste of each and everyone of the wonderful facets of the syndromes within this area of diagnosis. So when my day begins, its a roll of the dice whether or not its going to be a Parkinsons day, a Fibromyalgia day or a Chronic Fatigue Syndrome day etc... If I am really lucky, like I have been lately, I can exhibit a combination of several all together to where it over rides all my medications & essentially lays me out on the couch for many hours trying to recover as if I had been hit by lightning. Fully drained to the point where SpongeBob cartoons make sense to me. This is how my life goes now daily & as I enter new territories of how my body will attack, I am never fully surprised, just more shocked that I didnt think of it first and prepare myself. This weeks thus far is severe muscle fatigue upper extremities, so bad I cant move my hands without severe pain, writing its excruciating. I hadnt realized just how bad it was until I couldnt open a 24ounce soda bottle. The pain that went through my forearms and the lack of grip I had with both hands was utterly mind boggling to me, I felt like I was 80+ years old. This was also joined by difficulty swallowing, the glands in my neck severely swollen which would come and go through out the day, very odd indeed. Head ache beyond anything I could ever expect, for someone whos experienced about 13 headaches my entire life, this one made a believer out of me, which also I noticed my neck at the base of where the skull and neck meet, was severely painful. I had severe burning in my legs, the Fibro connection which fires out the bottoms of my feet and toes as if it was pure fire. Very uncomfortable & enough to bring tears to your eyes at times. I think I much prefer severe brain fog, short term memory loss and leg muscle issues over this one no doubt.
I woke up gasping for air, coughing, around 0500, I noticed the infamous swollen gland issue was extensive and for most of today thus far, my swallowing seems labored so eating today will be a challenge but quite possibly avoided until I feel that all is back to normal. I already suffer sleep apnea and use some pretty high settings on my BiPap, so the extra added restriction is not exactly needed today. My eyes are affected pretty badly today as well, seem cloudy & I am having trouble distinguishing colors such as difference between red & pink. Not sure whats up there but hoping eyes return to normal later today, very annoying to be visually impaired with all the other crap going on, this frustrates me the most. I am also flash sweating without any movement. Just sitting still and suddenly start sweating as if someone had me in a frying pan. A few minutes later, I need a cover so the internal tempature is wacky as well.
Its been a nightmare thus far 2011, before I was diagnosed it was just one issue at a time, now its everything all at once and its alot to deal with in that fashion. Very hard to digest the fact that your body hates the person you are. So you end up living with your arch nemesis who has control of your every movement. Very difficult concept to absorb but so much the truth when you look at it as if there is another "person" thats causing the issue. To think of it as just a system failure makes me feel like I am less than perfect and I want to just give in to it. Blaming it for whats happening, makes me want to fight it that much stronger but its hard to win a football game when the other team has your play book. As I had said in my Bucket List post, I plan on seeing my daughter turn 2 in November, then wait for her to turn three. Thats my way of dealing with this, not letting it get inside my head.
I decided to include a few of the symptoms that cause issues for someone suffering from Dysautonomia. I will most likely include some from Neurocardiogenic Syncope Syndrome as well because I had that diagnosed on Monday. Not sure how long this list will get but I am putting the ones that affect me first:
Lightheadedness
Fainting/Near Fainting (Syncope/Pre-Syncope)
Generalized weakness
Palpitations
Tremulousness
Shortness of breath
Chest discomfort and/or pain
Loss of sweating/Excessive Sweating
Bloating after meals
Nausea
Abdominal pain (Sometimes so bad it will cause syncope event if I press on it)
Diarrhea/Constipation
Bladder dysfunction (having this delight right now)
Pupillary dysfunction (yep, blurred, double, tunnel, foggy vision)
Fatigue (beyond physically, mentally not too bad most of the time)
Sleep disorders (sleep apnea ((Severe obstructive)) narcolepsy, insomnia)
Headache/Migraine (recent have only had about 13 total headaches in my life 3 this last month)
Myofascial pain (beyond words. Forearms, calves, thighs, hands severely affected)
Neuropathic pain (Peripheral Neuropathy lower extremities tested positive)
Dizziness
Tachycardia (Original reason loop monitor was implanted)
Exercise intolerance (rode a bike one day with my son, took three weeks to recover)
Intolerance to heat/cold
Feeling cold all over
Low blood pressure upon standing (NCS positive)
Cognitive impairment (good lord yes, I need to start recording stuff to recall)
Narrowing of upright pulse pressure (thats what led to my Tilt Table Test)
Cold hands (only when I feel symptomatic, my son has told me my hands turned to ice)
Chills (rare but comical when it happens, room tempature is usually 78 degrees)
Hypertension (blood pressure has scared people it was so high)
Hypotension (blood pressure so low, everyone kept asking if I felt faint, same week of high BP)
Numbness or tingling (alot of this going on even in the pelvis/groin area, elboys, fingers, legs)
Low back pain (um, herniated discs, big yes here no syndrome involved on this)
Aching neck & shoulders (this has become severe last 9 months)
Noise sensitivity (certain styles of noise make me cringe, especially bathroom fans)
Light sensitivity (severe flourecent lighting makes me walk oddly to the left, eyes get wierd)
Disequalibrium (I crash into the walls at least 30 times a week, getting used to it)
Arrhythmias (its actually been described as an added beat when I have a severe episode)
Chemical sensitivities (oh my lost 5 days over this, who, what, where, when & why)
Easily over-stimulated (if I am having a heavy symptom day, 2 things going on seem like 100)
Feeling full quickly (I eat like two bites & I am full, I call BS and just keep eating)
Feeling wired (perhaps not wired but my mind is way to alert at times, insomniac)
Food allergies/sensitivities (suddenly became allergic to seafood, slightest salt causes food binge)
Loss of appetite (I lost like 32 pounds in three weeks it was crazy)
Loss of sex drive (not proud of this one)
Muscle aches/joint pain
Polydipsia (thirst beyond belief, sometimes I am totally shocked by what I drank)
Weight gain/loss (lost alot of weight, was asked to use sodium again, gaining weight now)
Feeling detached from surroundings (could never explain this one but always felt I was alone)
Hypnic jerk (if you ever had on, its a blast. I have multiple even sitting)
Visual obstruction (had a black box blocking my view in one eye, no one could tell me why)
Due to a time limitation, i.e. getting my son from school, I'll have to stop there on symptoms. I have many more to share but I think I am going to include them in my post when they uncover the JMS/EDS syndrome connection. Thats going to be a fun one for me.
In closing I guess its safe to say that no matter what is happening to you, my theory is "someone has it worse" so I am able to overcome this daily issues and move alone in live. Yes I suffer daily, yes it suck, yes I want to lay down somewhere and just wake up when its all over but I have two small children that rely on their dad every day where as my oldest kids are self sufficient & can get on with life without having to have me over their shoulder each second. So for me its all about the energy of the little ones that gives me the boost to get going each day. I admit when I prepare to go to sleep finally, usually around 3-4 am, my last words are "Now I lay me down to sleep......" its a prayer that I feel is necessary to recite each and every night. I may never know when its my last time I am going to say it so I always want to know I did. I wont sit there and beg God to heal me, or ask why me etc... Instead, I ask that he heal all the children in the world burdened with cancer especially because its so close to my heart, I use my energy where I feel its most important. Thanks for reading. P.S. Dont be afraid to comment. Especially if you suffer from some form of ANS disorder.
With all that being said and you sit there pondering all those people in your life that might have one of those syndromes I mentioned & you are feeling bad that you might have spoke ill of them behind their back because you felt they were dramatically adding to their issue, wrap your mind around this concept. Imagine someone who has the pleasure of suffering the symptoms of all the syndromes combined. Yep, a person who can totally relate to someone who just has Parkinsons & another person who just has Fibromyalgia, or another who just has Chronic Fatigue Syndrome. So as each of these persons battle their one issue and it seems as though the world is ending for them, trust them, it is with some of the harshness of the symptoms of each seperate syndrome, along comes someone with Dysautonomia. The mother of Satan without doubt. I can talk to any person within the realm of a CNS, ANS disorder and be able to relate to exactly what they are going through because I have a taste of each and everyone of the wonderful facets of the syndromes within this area of diagnosis. So when my day begins, its a roll of the dice whether or not its going to be a Parkinsons day, a Fibromyalgia day or a Chronic Fatigue Syndrome day etc... If I am really lucky, like I have been lately, I can exhibit a combination of several all together to where it over rides all my medications & essentially lays me out on the couch for many hours trying to recover as if I had been hit by lightning. Fully drained to the point where SpongeBob cartoons make sense to me. This is how my life goes now daily & as I enter new territories of how my body will attack, I am never fully surprised, just more shocked that I didnt think of it first and prepare myself. This weeks thus far is severe muscle fatigue upper extremities, so bad I cant move my hands without severe pain, writing its excruciating. I hadnt realized just how bad it was until I couldnt open a 24ounce soda bottle. The pain that went through my forearms and the lack of grip I had with both hands was utterly mind boggling to me, I felt like I was 80+ years old. This was also joined by difficulty swallowing, the glands in my neck severely swollen which would come and go through out the day, very odd indeed. Head ache beyond anything I could ever expect, for someone whos experienced about 13 headaches my entire life, this one made a believer out of me, which also I noticed my neck at the base of where the skull and neck meet, was severely painful. I had severe burning in my legs, the Fibro connection which fires out the bottoms of my feet and toes as if it was pure fire. Very uncomfortable & enough to bring tears to your eyes at times. I think I much prefer severe brain fog, short term memory loss and leg muscle issues over this one no doubt.
I woke up gasping for air, coughing, around 0500, I noticed the infamous swollen gland issue was extensive and for most of today thus far, my swallowing seems labored so eating today will be a challenge but quite possibly avoided until I feel that all is back to normal. I already suffer sleep apnea and use some pretty high settings on my BiPap, so the extra added restriction is not exactly needed today. My eyes are affected pretty badly today as well, seem cloudy & I am having trouble distinguishing colors such as difference between red & pink. Not sure whats up there but hoping eyes return to normal later today, very annoying to be visually impaired with all the other crap going on, this frustrates me the most. I am also flash sweating without any movement. Just sitting still and suddenly start sweating as if someone had me in a frying pan. A few minutes later, I need a cover so the internal tempature is wacky as well.
Its been a nightmare thus far 2011, before I was diagnosed it was just one issue at a time, now its everything all at once and its alot to deal with in that fashion. Very hard to digest the fact that your body hates the person you are. So you end up living with your arch nemesis who has control of your every movement. Very difficult concept to absorb but so much the truth when you look at it as if there is another "person" thats causing the issue. To think of it as just a system failure makes me feel like I am less than perfect and I want to just give in to it. Blaming it for whats happening, makes me want to fight it that much stronger but its hard to win a football game when the other team has your play book. As I had said in my Bucket List post, I plan on seeing my daughter turn 2 in November, then wait for her to turn three. Thats my way of dealing with this, not letting it get inside my head.
I decided to include a few of the symptoms that cause issues for someone suffering from Dysautonomia. I will most likely include some from Neurocardiogenic Syncope Syndrome as well because I had that diagnosed on Monday. Not sure how long this list will get but I am putting the ones that affect me first:
Lightheadedness
Fainting/Near Fainting (Syncope/Pre-Syncope)
Generalized weakness
Palpitations
Tremulousness
Shortness of breath
Chest discomfort and/or pain
Loss of sweating/Excessive Sweating
Bloating after meals
Nausea
Abdominal pain (Sometimes so bad it will cause syncope event if I press on it)
Diarrhea/Constipation
Bladder dysfunction (having this delight right now)
Pupillary dysfunction (yep, blurred, double, tunnel, foggy vision)
Fatigue (beyond physically, mentally not too bad most of the time)
Sleep disorders (sleep apnea ((Severe obstructive)) narcolepsy, insomnia)
Headache/Migraine (recent have only had about 13 total headaches in my life 3 this last month)
Myofascial pain (beyond words. Forearms, calves, thighs, hands severely affected)
Neuropathic pain (Peripheral Neuropathy lower extremities tested positive)
Dizziness
Tachycardia (Original reason loop monitor was implanted)
Exercise intolerance (rode a bike one day with my son, took three weeks to recover)
Intolerance to heat/cold
Feeling cold all over
Low blood pressure upon standing (NCS positive)
Cognitive impairment (good lord yes, I need to start recording stuff to recall)
Narrowing of upright pulse pressure (thats what led to my Tilt Table Test)
Cold hands (only when I feel symptomatic, my son has told me my hands turned to ice)
Chills (rare but comical when it happens, room tempature is usually 78 degrees)
Hypertension (blood pressure has scared people it was so high)
Hypotension (blood pressure so low, everyone kept asking if I felt faint, same week of high BP)
Numbness or tingling (alot of this going on even in the pelvis/groin area, elboys, fingers, legs)
Low back pain (um, herniated discs, big yes here no syndrome involved on this)
Aching neck & shoulders (this has become severe last 9 months)
Noise sensitivity (certain styles of noise make me cringe, especially bathroom fans)
Light sensitivity (severe flourecent lighting makes me walk oddly to the left, eyes get wierd)
Disequalibrium (I crash into the walls at least 30 times a week, getting used to it)
Arrhythmias (its actually been described as an added beat when I have a severe episode)
Chemical sensitivities (oh my lost 5 days over this, who, what, where, when & why)
Easily over-stimulated (if I am having a heavy symptom day, 2 things going on seem like 100)
Feeling full quickly (I eat like two bites & I am full, I call BS and just keep eating)
Feeling wired (perhaps not wired but my mind is way to alert at times, insomniac)
Food allergies/sensitivities (suddenly became allergic to seafood, slightest salt causes food binge)
Loss of appetite (I lost like 32 pounds in three weeks it was crazy)
Loss of sex drive (not proud of this one)
Muscle aches/joint pain
Polydipsia (thirst beyond belief, sometimes I am totally shocked by what I drank)
Weight gain/loss (lost alot of weight, was asked to use sodium again, gaining weight now)
Feeling detached from surroundings (could never explain this one but always felt I was alone)
Hypnic jerk (if you ever had on, its a blast. I have multiple even sitting)
Visual obstruction (had a black box blocking my view in one eye, no one could tell me why)
Due to a time limitation, i.e. getting my son from school, I'll have to stop there on symptoms. I have many more to share but I think I am going to include them in my post when they uncover the JMS/EDS syndrome connection. Thats going to be a fun one for me.
In closing I guess its safe to say that no matter what is happening to you, my theory is "someone has it worse" so I am able to overcome this daily issues and move alone in live. Yes I suffer daily, yes it suck, yes I want to lay down somewhere and just wake up when its all over but I have two small children that rely on their dad every day where as my oldest kids are self sufficient & can get on with life without having to have me over their shoulder each second. So for me its all about the energy of the little ones that gives me the boost to get going each day. I admit when I prepare to go to sleep finally, usually around 3-4 am, my last words are "Now I lay me down to sleep......" its a prayer that I feel is necessary to recite each and every night. I may never know when its my last time I am going to say it so I always want to know I did. I wont sit there and beg God to heal me, or ask why me etc... Instead, I ask that he heal all the children in the world burdened with cancer especially because its so close to my heart, I use my energy where I feel its most important. Thanks for reading. P.S. Dont be afraid to comment. Especially if you suffer from some form of ANS disorder.
Sunday, August 28, 2011
When Do You Tell The Kids?
Any parent can tell you that given the choice we'd gladly take the pain & suffering away from our children for any ailment even if its just a simple scratch. Seeing their little faces cringe in pain, tears flowing and they keep calling for mom or dad will easily cripple any parent so to me its far worse then anything this syndrome can throw at me by far. With children ranging in ages 22 months to 21 years old, I have reservations about even discussing my issues with the oldest children because they are trying so hard to focus on their future, they shouldnt be burdened with my stressful situation which will only cause them to lose focus. I refuse to do that too them. Obviously the younger children wont understand this at all, my son who is 7 only sees his dad in pain which I try to hide but he can see my limping sometimes or slow to get up, hes not stupid. I am of course the one who always prepares for the worst and I have made sure that his therapist is aware of my medical situation in case it becomes a matter of crisis therapy. I'd hate to even consider the possibility but given my extensive list of potential body crash points, I do have a higher fatality rate then the average Dysautonomia patient would.
The baby would have such extreme confusion. Its bad enough that we live in split homes as it is due to my wifes text announcement that the marriage was over, so to further the levels of confusion for this child would be if I suddenly didnt exist in her life. Shes much more attached to her mom which most younger kids are but her and I share an amazing bond that is filled with some of the most amazing moments that I couldnt even imagine my life without those special times to cherish. She follows me everywhere, tells me too shoosh if I am being too loud, uses her little toddler vocabulary etc... Painful to imagine this child growing up without me after I have been so much of her life so far.
My oldest biological daughter, well shes a difficult one. Her grandmother blocked me from her life early on, wanted me to sign away custody which I refused. The mother had not told me she was pregnant & I had to find out about it two months after I had moved away to Florida. Took me forever to find someone that had her phone number, I didnt even know her last name, I basically used a form of Ebonics when pronouncing it. As I said the grandmother kept stonewalling me insisting her attorney would send me the papers and I kept refusing insisting on paternity test and then doing what needed to be done. Where we went off track I wont put on this blog just in case my daughter actually is aware I even have this blog. She still doesnt know the truth of what actually happened and why she didnt have a dad. She was told that I left her which was a complete lie.
What the grandmother & the mother didnt know was I had a severe alcohol problem and by pure coincedence, their refusal to cooperate with me for paternity test was probably better in the long run for my daughter then seeing her dad drunk. Although I'd have to wonder if I might have stopped knowing I had that kind of responsibility now. Nevertheless, I had given the grandmother my home number, work number, mailing address and even the mailing address at work so they had every concievable way to contact me. As it stood the information I shared with grandmother with the exception of the home number I could be contacted right up until the year 2000. So that gave them 8 years and even after that, the new owners knew me and could easily track me down until this day so there was no excuse why I wasnt contacted by the mother to straighten things out. Well no normal excuse, only her, her mom and I knew why I wasnt contacted.
I had lost the number to contact the grandmother and mother as well as the individual I had contacted to get it. Sadly it was my room mates phone as well and he moved back to NY before I could obtain the phone records with that call I had made. Again, I was without the contact information and oddly enough, the correct spelling of their last name. Calling information with countless possibilities was pointless, it was fail after fail. I never gave up though. Each time I went to NJ, I ended up at the local library to view birth notices of all the local newspapers in that region of NJ to see if I had a hit on at least an approximate time and the mothers name. The grandmother refused to tell me the sex of the baby when I asked but did say it was a beautiful 3 month old which gave me a timeline to work with for the birth. I was unsuccessful in my searches for the birth notice, years of attempts, no hits.
In 1997, I beat alcohol and I also had met my wife, well now soon to be exwife. I had told her about the possibility of the mystery child and she was ok with it saying we'd deal with it when it happen to be an issue. Well for me it was a never ending issue from 1992 until current. I was still searching and in 1998, I began to subscribe to the internet. However, without the last name, again I was up against the wall for finding the any leads. I would later find out that as I searched endlessly in NJ, they had moved to SC so I was even further off my extremely cold trail.
When 2007 came around and I watched my grandmother dying, I was more upset with the fact that I had promised her that I would get to the bottom of that situation with the child. She was the first to hear about it when my daughters grandmother called her threatening prenatal care money, something even my daughters mother was unaware of. So the guilt of never concluding my involvement concerning this child was now overwhelming and as we buried my grandmother I vowed to step up the search until I concluded it no matter the outcome.
In 2008, with the help of some friends, that persistance came through and I contacted a now 15 year old girl on Myspace asking her three very unusual questions that would prove if her mom was indeed the mom I had been looking for. Sure enough, within two minutes, I was talking to my daughter. It was bittersweet, she had been filled with so much hatred, the lies that were told and what made it worse was the fact that even though I could prove my side of it, I knew I would only damage her further forcing her to trust no one if she found out her mom and grandmother had lied to her all that time. Of course the resistance her mother gave in the beginning was epic, she knew I was the one link to her past that could now shed light on a fabricated tangle of lies this poor kid had heard about her dad. It took her mom a good month or so before she realized that our daughter wanted a father in her life no matter what had happened. When I kept pushing the paternity issue, it was met with extreme prejudice by the mother, her argument, I wont subject my daughter to that kind of pain. Its a test swab in the mouth, no sedation, but I knew what she meant even though she tried so hard to deny it. Given the time line, she had to really think about it and she realized how wrong she had been and then she heard about the conversation I had with her mom back in 92, she of course heard a different version which didnt surprise me. What gave me validation was a very confusing statement that stuck with the mother for years until we talked, her mom stated that I refused to do a paternity test and I also refused to sign away custody. She said any other guy in the world given a chance to escape without liability would have jumped at that, it didnt make sense to her yet she never tried to call me. So instead, she makes our daughter suffer without a dad. I decided that I needed to be beyond friendly with her, I needed her to confirm our past in emails and texts so that I had a printed record of it as my absolute proof. It was flawless, she confirmed every detail, never once tried to deny it, and was actually proud of herself to some degree once she opened up about it. She now trusted me more so then her husband of 8 or so years, hows that for a twist of fate? Comically enough, she thought I was there to trash her to our daughter and steal her away but instead I kept telling our daughter how important it was to listen to her mom. When the mother began to first talk to me she had said something to me that I had only directed to my daughter and she said it verbatim so I paused and then said to her, "you using spyware?" She had to admit she had it, she obviously knew that her explanation of why she said what she said wasnt flying and I must have known so she did admit it. The ironic part, when you do something like that, be prepared when that viper bites back. She found out things about her husband that not only caused her to insist on divorce immediately but she also intended on moving back with her mom which meant I would lose contact with my daughter. I had already decided to send my daughter money directly to her account because her mom slapped my hand away in 92, so this new talk of divorce from her husband she advises me she'd have to take me to court for child support. I of course told her to pound salt, it wasnt going to her household, it was my daughters money only. She still wanted to play hardball & I of course advised her to explain to our daughter why her money stopped going into her account and into my attorneys escrow account set for a trust fund that matured when she was 18. Knowing my daughter was a spitfire and would go nuts on her mom for taking away money she used to go shopping, I pretty much held the cards for a bit. I needed to assure a better anchor however and as I made her mom fall back in love with me which took all of about 30 minutes from when we first started talking, I got her to a point one evening that she pretty much attacked the soon to be served husband in an intimate exchange. This ended in a pregnancy which as I figured would keep her in the relationship with her husband regardless of how she felt about him. Hard to believe that she was as easy to read 16 years later. I was stunned, probably because I was the first to know about the pregnancy. LOL enemy to friend, go figure. I warned her that because I had visited that there would be question as to whos child it was and she became irrate over that comment, suggesting that she lived the life of a perfect christian woman, who went to church all the time, volunteered endlessly etc... Well for the record, she was a perfect christian woman when we met too, didnt stop her that time either. Well as if it was from my mouth to Gods ears, who do you think questioned it? LOL, our daughter. I almost fell off my chair. Thats what she thought of her mom, so gotta love karma.
My relationship with my daughter has always been driven by money. When she needs it, I hear from her. We used to talk all the time about all kinds of silly stuff but as soon as the money hit the bank, out the window with manners and her obligation to keep in touch. I know its teens in general and with the way shes been brought up, I could not even expect a thank you. Its like shes been brought up by cave people, sad really, but thats what happens when you arent brought up Italian I guess, lol.
I had lost my job in Oct 2010 and told her that I had to stop sending money until I was working again. Her mother of course wondering why my parents didnt step in. LOL funny, they drove 750 miles to meet their granddaughter only to be blown off in person, never receive even a Christmas card so I'd pretty much say not to hold her breath waiting for them to send money. If I could have reached through the phone to give the mother a few vicious slaps for being that stupid I certainly would have, it amazes me that shes that dense.
So my already limited contact with my daughter became even less and every comment I made on FB she would make a point of ridiculing me in some way, or being condecending to impress her friends that she tells her dad off when she wants. The exact same content in a phone conversation she'd be giggling away and adding sarcasm too it so I allowed her the 15 minutes of fame to be impressive amoungst her friends but I also stopped commenting altogether so what did she gain?
I had received a phone call from her earlier this year which was odd. She had gotten a new number and she was EXTREMELY chatty with me. It was like when we first met via phone, endless conversation, joking, fun, future, etc... I was still cautious though, it was out of the ordinary for her so I waited and nearing the end of the conversation the angle came. Asking about my job situation and about when I might be going back to work, never asking for money but shes slick, she waited a few sentences and advised me how expensive her cosmetology school supplies were going to be and how she'd have to work more because "mom" didnt have the extra money. I had an argument with her in mid 2010 that I accused her of only contacting me when she needed money so instead of learning from that, she decides that if she hides it in an hour or so of dialog, maybe I'd be dumb and naive like her mom and not notice her angle. She forgot that she got her inteligence in working the streets so to speak from my bloodline. You take street smart and book smart and drop them off at the worst part of town with nothing but a twenty dollar bill in their pocket and tell them you'll meet them five miles away, they are taking book smart out in a body bag & street smart you have to go in and find because they have started a new business which is making a profit already. Not hard to figure out really if you met her mom and I at the same time.
So after I got off the phone I put together a letter for her graduation which was along the same lines. All the chunky discussion up front, some mild drama in the middle and then the finale at the end. I advised her that as per her mother and I, once she graduated high school, I would no longer be sending her money. This was a test. I already knew she was destined to fail, she had her mothers famous silent treatment genes and I had to see if she learned anything at all over the past three years. That was June 1st, 2011, never heard from her again. No return texts which she commented to another friend she never misses any texts, triple checks her phone to make sure. I have documented proof I sent them along with proof she received via my carrier so it clearly shows I was just a dollar amount to her. Her trip to visit 4 hours away from my house, she never told me the dates, instead a wall post to everyone she was leaving in the morning to Disney. I had no prior notice of the week and it was one of those weeks that I had three lawyer appts, one was mediation, 4 doctor appts. She also knew that because of my divorce I needed extra notice for traveling with her brother and sister out of county from ex's attorney which with limited notice that was impossible and it eliminated 4 of the possible days I could have tried to race up there myself because I had the kids those days. Besides it being an 8 hour round trip just to meet for dinner, she doesnt think of the investment of time there either. Instead, she returns home and unfriends me on FB, LOL. Nice, very mature. I am sure shes told everyone that will listen what a terrible father I am that I didnt even try to get ahold of her and she even went to FL and I didnt even try to see her. I give her credit for the attempt but its a show and tell for idiots, morons and her moms side of the family. Any normal thinking person in the world would ask her a few questions, then might even ask me for the truth and see where this went sour. I tried so many times with her, its time for her to grow up and try with me for a change. In the end, shes a child that never really had a dad and I am a dad that tried so hard to bring her into my life after she was shafted by her own family and taken from me but at the end of the day, I have four other kids that appreciate me so reality is come aboard or continue to swim the sluggish waters of drama with her mom. Its not that hard to figure out.
It may sound like I am bitter. Not at all with my daughter, shes a product of her enviornment. Being raised by manner less people you cant expect her to be alot different. I wasnt hurt by her not acknowledging me for fathers day, I was more amused that she recognized Ryan Dunn & passed on condolences. It truly shows me where her priorities are, and as sad as this is to say, god forbid a fire broke out in her house, she'd grab her bearded dragon and run out the door rather than grab one of her sisters, not because shes entirely self centered but because she'd assume that her mom and step dad had the kids and no one would grab the dragon. Not ever considering that perhaps her mom might be overwhelmed and need help or perhaps in trouble. Its the generation as well but amplified by the way they are raised. There are glimmers of hope in her futuristic endeavors such as work and extended schooling so perhaps she'll be able to overcome it all. I can only pray.
Lastly, as if this post needs to be any longer, my other two girls. The 18 year old is trying to find her place in life and after making a poor choice, shes bounced back to right the wrong and I am damn proud of her. I chose not to inform her at all of my situation because I need her to truly focus and not lose sight of the goal. She was terribly upset the last time I was hospitalized and had her mother known she'd react the way she did, she never would have told her. The girls arent my blood but you'd swear they were by the way we get along. I love them both as if they were. I promised to always be there for them and offer advise as I have over the years so when I found out that I might have promised something that I can't deliver, it truly bothered me. I am not as worried as the oldest, 21 yr old as I am for the other. They have both been let down by their real father and I have stepped in to fill his shoes on more than one occasion. They never have to feel that they can't come to me about their problems no matter the topic, I am always there. I do have guilt about not telling the oldest, it seems as though she should know about it but with her being a newly wed and staring her life 3000 miles away, I didnt want her to become overwhelmed with the thought she wasnt here for me.
In closing I am really no further along in my decision to discuss this with any of my children. I just feel I must always protect them from things and even when things pertain to me directly, I still think I take the cautious road. I think as more becomes diagnosed and I have a better handle on it medically, then I might share it with one of them. Thanks for reading
The baby would have such extreme confusion. Its bad enough that we live in split homes as it is due to my wifes text announcement that the marriage was over, so to further the levels of confusion for this child would be if I suddenly didnt exist in her life. Shes much more attached to her mom which most younger kids are but her and I share an amazing bond that is filled with some of the most amazing moments that I couldnt even imagine my life without those special times to cherish. She follows me everywhere, tells me too shoosh if I am being too loud, uses her little toddler vocabulary etc... Painful to imagine this child growing up without me after I have been so much of her life so far.
My oldest biological daughter, well shes a difficult one. Her grandmother blocked me from her life early on, wanted me to sign away custody which I refused. The mother had not told me she was pregnant & I had to find out about it two months after I had moved away to Florida. Took me forever to find someone that had her phone number, I didnt even know her last name, I basically used a form of Ebonics when pronouncing it. As I said the grandmother kept stonewalling me insisting her attorney would send me the papers and I kept refusing insisting on paternity test and then doing what needed to be done. Where we went off track I wont put on this blog just in case my daughter actually is aware I even have this blog. She still doesnt know the truth of what actually happened and why she didnt have a dad. She was told that I left her which was a complete lie.
What the grandmother & the mother didnt know was I had a severe alcohol problem and by pure coincedence, their refusal to cooperate with me for paternity test was probably better in the long run for my daughter then seeing her dad drunk. Although I'd have to wonder if I might have stopped knowing I had that kind of responsibility now. Nevertheless, I had given the grandmother my home number, work number, mailing address and even the mailing address at work so they had every concievable way to contact me. As it stood the information I shared with grandmother with the exception of the home number I could be contacted right up until the year 2000. So that gave them 8 years and even after that, the new owners knew me and could easily track me down until this day so there was no excuse why I wasnt contacted by the mother to straighten things out. Well no normal excuse, only her, her mom and I knew why I wasnt contacted.
I had lost the number to contact the grandmother and mother as well as the individual I had contacted to get it. Sadly it was my room mates phone as well and he moved back to NY before I could obtain the phone records with that call I had made. Again, I was without the contact information and oddly enough, the correct spelling of their last name. Calling information with countless possibilities was pointless, it was fail after fail. I never gave up though. Each time I went to NJ, I ended up at the local library to view birth notices of all the local newspapers in that region of NJ to see if I had a hit on at least an approximate time and the mothers name. The grandmother refused to tell me the sex of the baby when I asked but did say it was a beautiful 3 month old which gave me a timeline to work with for the birth. I was unsuccessful in my searches for the birth notice, years of attempts, no hits.
In 1997, I beat alcohol and I also had met my wife, well now soon to be exwife. I had told her about the possibility of the mystery child and she was ok with it saying we'd deal with it when it happen to be an issue. Well for me it was a never ending issue from 1992 until current. I was still searching and in 1998, I began to subscribe to the internet. However, without the last name, again I was up against the wall for finding the any leads. I would later find out that as I searched endlessly in NJ, they had moved to SC so I was even further off my extremely cold trail.
When 2007 came around and I watched my grandmother dying, I was more upset with the fact that I had promised her that I would get to the bottom of that situation with the child. She was the first to hear about it when my daughters grandmother called her threatening prenatal care money, something even my daughters mother was unaware of. So the guilt of never concluding my involvement concerning this child was now overwhelming and as we buried my grandmother I vowed to step up the search until I concluded it no matter the outcome.
In 2008, with the help of some friends, that persistance came through and I contacted a now 15 year old girl on Myspace asking her three very unusual questions that would prove if her mom was indeed the mom I had been looking for. Sure enough, within two minutes, I was talking to my daughter. It was bittersweet, she had been filled with so much hatred, the lies that were told and what made it worse was the fact that even though I could prove my side of it, I knew I would only damage her further forcing her to trust no one if she found out her mom and grandmother had lied to her all that time. Of course the resistance her mother gave in the beginning was epic, she knew I was the one link to her past that could now shed light on a fabricated tangle of lies this poor kid had heard about her dad. It took her mom a good month or so before she realized that our daughter wanted a father in her life no matter what had happened. When I kept pushing the paternity issue, it was met with extreme prejudice by the mother, her argument, I wont subject my daughter to that kind of pain. Its a test swab in the mouth, no sedation, but I knew what she meant even though she tried so hard to deny it. Given the time line, she had to really think about it and she realized how wrong she had been and then she heard about the conversation I had with her mom back in 92, she of course heard a different version which didnt surprise me. What gave me validation was a very confusing statement that stuck with the mother for years until we talked, her mom stated that I refused to do a paternity test and I also refused to sign away custody. She said any other guy in the world given a chance to escape without liability would have jumped at that, it didnt make sense to her yet she never tried to call me. So instead, she makes our daughter suffer without a dad. I decided that I needed to be beyond friendly with her, I needed her to confirm our past in emails and texts so that I had a printed record of it as my absolute proof. It was flawless, she confirmed every detail, never once tried to deny it, and was actually proud of herself to some degree once she opened up about it. She now trusted me more so then her husband of 8 or so years, hows that for a twist of fate? Comically enough, she thought I was there to trash her to our daughter and steal her away but instead I kept telling our daughter how important it was to listen to her mom. When the mother began to first talk to me she had said something to me that I had only directed to my daughter and she said it verbatim so I paused and then said to her, "you using spyware?" She had to admit she had it, she obviously knew that her explanation of why she said what she said wasnt flying and I must have known so she did admit it. The ironic part, when you do something like that, be prepared when that viper bites back. She found out things about her husband that not only caused her to insist on divorce immediately but she also intended on moving back with her mom which meant I would lose contact with my daughter. I had already decided to send my daughter money directly to her account because her mom slapped my hand away in 92, so this new talk of divorce from her husband she advises me she'd have to take me to court for child support. I of course told her to pound salt, it wasnt going to her household, it was my daughters money only. She still wanted to play hardball & I of course advised her to explain to our daughter why her money stopped going into her account and into my attorneys escrow account set for a trust fund that matured when she was 18. Knowing my daughter was a spitfire and would go nuts on her mom for taking away money she used to go shopping, I pretty much held the cards for a bit. I needed to assure a better anchor however and as I made her mom fall back in love with me which took all of about 30 minutes from when we first started talking, I got her to a point one evening that she pretty much attacked the soon to be served husband in an intimate exchange. This ended in a pregnancy which as I figured would keep her in the relationship with her husband regardless of how she felt about him. Hard to believe that she was as easy to read 16 years later. I was stunned, probably because I was the first to know about the pregnancy. LOL enemy to friend, go figure. I warned her that because I had visited that there would be question as to whos child it was and she became irrate over that comment, suggesting that she lived the life of a perfect christian woman, who went to church all the time, volunteered endlessly etc... Well for the record, she was a perfect christian woman when we met too, didnt stop her that time either. Well as if it was from my mouth to Gods ears, who do you think questioned it? LOL, our daughter. I almost fell off my chair. Thats what she thought of her mom, so gotta love karma.
My relationship with my daughter has always been driven by money. When she needs it, I hear from her. We used to talk all the time about all kinds of silly stuff but as soon as the money hit the bank, out the window with manners and her obligation to keep in touch. I know its teens in general and with the way shes been brought up, I could not even expect a thank you. Its like shes been brought up by cave people, sad really, but thats what happens when you arent brought up Italian I guess, lol.
I had lost my job in Oct 2010 and told her that I had to stop sending money until I was working again. Her mother of course wondering why my parents didnt step in. LOL funny, they drove 750 miles to meet their granddaughter only to be blown off in person, never receive even a Christmas card so I'd pretty much say not to hold her breath waiting for them to send money. If I could have reached through the phone to give the mother a few vicious slaps for being that stupid I certainly would have, it amazes me that shes that dense.
So my already limited contact with my daughter became even less and every comment I made on FB she would make a point of ridiculing me in some way, or being condecending to impress her friends that she tells her dad off when she wants. The exact same content in a phone conversation she'd be giggling away and adding sarcasm too it so I allowed her the 15 minutes of fame to be impressive amoungst her friends but I also stopped commenting altogether so what did she gain?
I had received a phone call from her earlier this year which was odd. She had gotten a new number and she was EXTREMELY chatty with me. It was like when we first met via phone, endless conversation, joking, fun, future, etc... I was still cautious though, it was out of the ordinary for her so I waited and nearing the end of the conversation the angle came. Asking about my job situation and about when I might be going back to work, never asking for money but shes slick, she waited a few sentences and advised me how expensive her cosmetology school supplies were going to be and how she'd have to work more because "mom" didnt have the extra money. I had an argument with her in mid 2010 that I accused her of only contacting me when she needed money so instead of learning from that, she decides that if she hides it in an hour or so of dialog, maybe I'd be dumb and naive like her mom and not notice her angle. She forgot that she got her inteligence in working the streets so to speak from my bloodline. You take street smart and book smart and drop them off at the worst part of town with nothing but a twenty dollar bill in their pocket and tell them you'll meet them five miles away, they are taking book smart out in a body bag & street smart you have to go in and find because they have started a new business which is making a profit already. Not hard to figure out really if you met her mom and I at the same time.
So after I got off the phone I put together a letter for her graduation which was along the same lines. All the chunky discussion up front, some mild drama in the middle and then the finale at the end. I advised her that as per her mother and I, once she graduated high school, I would no longer be sending her money. This was a test. I already knew she was destined to fail, she had her mothers famous silent treatment genes and I had to see if she learned anything at all over the past three years. That was June 1st, 2011, never heard from her again. No return texts which she commented to another friend she never misses any texts, triple checks her phone to make sure. I have documented proof I sent them along with proof she received via my carrier so it clearly shows I was just a dollar amount to her. Her trip to visit 4 hours away from my house, she never told me the dates, instead a wall post to everyone she was leaving in the morning to Disney. I had no prior notice of the week and it was one of those weeks that I had three lawyer appts, one was mediation, 4 doctor appts. She also knew that because of my divorce I needed extra notice for traveling with her brother and sister out of county from ex's attorney which with limited notice that was impossible and it eliminated 4 of the possible days I could have tried to race up there myself because I had the kids those days. Besides it being an 8 hour round trip just to meet for dinner, she doesnt think of the investment of time there either. Instead, she returns home and unfriends me on FB, LOL. Nice, very mature. I am sure shes told everyone that will listen what a terrible father I am that I didnt even try to get ahold of her and she even went to FL and I didnt even try to see her. I give her credit for the attempt but its a show and tell for idiots, morons and her moms side of the family. Any normal thinking person in the world would ask her a few questions, then might even ask me for the truth and see where this went sour. I tried so many times with her, its time for her to grow up and try with me for a change. In the end, shes a child that never really had a dad and I am a dad that tried so hard to bring her into my life after she was shafted by her own family and taken from me but at the end of the day, I have four other kids that appreciate me so reality is come aboard or continue to swim the sluggish waters of drama with her mom. Its not that hard to figure out.
It may sound like I am bitter. Not at all with my daughter, shes a product of her enviornment. Being raised by manner less people you cant expect her to be alot different. I wasnt hurt by her not acknowledging me for fathers day, I was more amused that she recognized Ryan Dunn & passed on condolences. It truly shows me where her priorities are, and as sad as this is to say, god forbid a fire broke out in her house, she'd grab her bearded dragon and run out the door rather than grab one of her sisters, not because shes entirely self centered but because she'd assume that her mom and step dad had the kids and no one would grab the dragon. Not ever considering that perhaps her mom might be overwhelmed and need help or perhaps in trouble. Its the generation as well but amplified by the way they are raised. There are glimmers of hope in her futuristic endeavors such as work and extended schooling so perhaps she'll be able to overcome it all. I can only pray.
Lastly, as if this post needs to be any longer, my other two girls. The 18 year old is trying to find her place in life and after making a poor choice, shes bounced back to right the wrong and I am damn proud of her. I chose not to inform her at all of my situation because I need her to truly focus and not lose sight of the goal. She was terribly upset the last time I was hospitalized and had her mother known she'd react the way she did, she never would have told her. The girls arent my blood but you'd swear they were by the way we get along. I love them both as if they were. I promised to always be there for them and offer advise as I have over the years so when I found out that I might have promised something that I can't deliver, it truly bothered me. I am not as worried as the oldest, 21 yr old as I am for the other. They have both been let down by their real father and I have stepped in to fill his shoes on more than one occasion. They never have to feel that they can't come to me about their problems no matter the topic, I am always there. I do have guilt about not telling the oldest, it seems as though she should know about it but with her being a newly wed and staring her life 3000 miles away, I didnt want her to become overwhelmed with the thought she wasnt here for me.
In closing I am really no further along in my decision to discuss this with any of my children. I just feel I must always protect them from things and even when things pertain to me directly, I still think I take the cautious road. I think as more becomes diagnosed and I have a better handle on it medically, then I might share it with one of them. Thanks for reading
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