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.
Tuesday, September 27, 2011
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.
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