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.
Sunday, October 30, 2011
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
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