When Do You Tell The Kids?

Any parent can tell you that given the choice we'd gladly take the pain & suffering away from our children for any ailment even if its just a simple scratch. Seeing their little faces cringe in pain, tears flowing and they keep calling for mom or dad will easily cripple any parent so to me its far worse then anything this syndrome can throw at me by far. With children ranging in ages 22 months to 21 years old, I have reservations about even discussing my issues with the oldest children because they are trying so hard to focus on their future, they shouldnt be burdened with my stressful situation which will only cause them to lose focus. I refuse to do that too them. Obviously the younger children wont understand this at all, my son who is 7 only sees his dad in pain which I try to hide but he can see my limping sometimes or slow to get up, hes not stupid. I am of course the one who always prepares for the worst and I have made sure that his therapist is aware of my medical situation in case it becomes a matter of crisis therapy. I'd hate to even consider the possibility but given my extensive list of potential body crash points, I do have a higher fatality rate then the average Dysautonomia patient would.
The baby would have such extreme confusion. Its bad enough that we live in split homes as it is due to my wifes text announcement that the marriage was over, so to further the levels of confusion for this child would be if I suddenly didnt exist in her life. Shes much more attached to her mom which most younger kids are but her and I share an amazing bond that is filled with some of the most amazing moments that I couldnt even imagine my life without those special times to cherish. She follows me everywhere, tells me too shoosh if I am being too loud, uses her little toddler vocabulary etc... Painful to imagine this child growing up without me after I have been so much of her life so far.
My oldest biological daughter, well shes a difficult one. Her grandmother blocked me from her life early on, wanted me to sign away custody which I refused. The mother had not told me she was pregnant & I had to find out about it two months after I had moved away to Florida. Took me forever to find someone that had her phone number, I didnt even know her last name, I basically used a form of Ebonics when pronouncing it. As I said the grandmother kept stonewalling me insisting her attorney would send me the papers and I kept refusing insisting on paternity test and then doing what needed to be done. Where we went off track I wont put on this blog just in case my daughter actually is aware I even have this blog. She still doesnt know the truth of what actually happened and why she didnt have a dad. She was told that I left her which was a complete lie.
What the grandmother & the mother didnt know was I had a severe alcohol problem and by pure coincedence, their refusal to cooperate with me for paternity test was probably better in the long run for my daughter then seeing her dad drunk. Although I'd have to wonder if I might have stopped knowing I had that kind of responsibility now. Nevertheless, I had given the grandmother my home number, work number, mailing address and even the mailing address at work so they had every concievable way to contact me. As it stood the information I shared with grandmother with the exception of the home number I could be contacted right up until the year 2000. So that gave them 8 years and even after that, the new owners knew me and could easily track me down until this day so there was no excuse why I wasnt contacted by the mother to straighten things out. Well no normal excuse, only her, her mom and I knew why I wasnt contacted.
I had lost the number to contact the grandmother and mother as well as the individual I had contacted to get it. Sadly it was my room mates phone as well and he moved back to NY before I could obtain the phone records with that call I had made. Again, I was without the contact information and oddly enough, the correct spelling of their last name. Calling information with countless possibilities was pointless, it was fail after fail. I never gave up though. Each time I went to NJ, I ended up at the local library to view birth notices of all the local newspapers in that region of NJ to see if I had a hit on at least an approximate time and the mothers name. The grandmother refused to tell me the sex of the baby when I asked but did say it was a beautiful 3 month old which gave me a timeline to work with for the birth. I was unsuccessful in my searches for the birth notice, years of attempts, no hits.
In 1997, I beat alcohol and I also had met my wife, well now soon to be exwife. I had told her about the possibility of the mystery child and she was ok with it saying we'd deal with it when it happen to be an issue. Well for me it was a never ending issue from 1992 until current. I was still searching and in 1998, I began to subscribe to the internet. However, without the last name, again I was up against the wall for finding the any leads. I would later find out that as I searched endlessly in NJ, they had moved to SC so I was even further off my extremely cold trail.
When 2007 came around and I watched my grandmother dying, I was more upset with the fact that I had promised her that I would get to the bottom of that situation with the child. She was the first to hear about it when my daughters grandmother called her threatening prenatal care money, something even my daughters mother was unaware of. So the guilt of never concluding my involvement concerning this child was now overwhelming and as we buried my grandmother I vowed to step up the search until I concluded it no matter the outcome.
In 2008, with the help of some friends, that persistance came through and I contacted a now 15 year old girl on Myspace asking her three very unusual questions that would prove if her mom was indeed the mom I had been looking for. Sure enough, within two minutes, I was talking to my daughter. It was bittersweet, she had been filled with so much hatred, the lies that were told and what made it worse was the fact that even though I could prove my side of it, I knew I would only damage her further forcing her to trust no one if she found out her mom and grandmother had lied to her all that time. Of course the resistance her mother gave in the beginning was epic, she knew I was the one link to her past that could now shed light on a fabricated tangle of lies this poor kid had heard about her dad. It took her mom a good month or so before she realized that our daughter wanted a father in her life no matter what had happened. When I kept pushing the paternity issue, it was met with extreme prejudice by the mother, her argument, I wont subject my daughter to that kind of pain. Its a test swab in the mouth, no sedation, but I knew what she meant even though she tried so hard to deny it. Given the time line, she had to really think about it and she realized how wrong she had been and then she heard about the conversation I had with her mom back in 92, she of course heard a different version which didnt surprise me. What gave me validation was a very confusing statement that stuck with the mother for years until we talked, her mom stated that I refused to do a paternity test and I also refused to sign away custody. She said any other guy in the world given a chance to escape without liability would have jumped at that, it didnt make sense to her yet she never tried to call me. So instead, she makes our daughter suffer without a dad. I decided that I needed to be beyond friendly with her, I needed her to confirm our past in emails and texts so that I had a printed record of it as my absolute proof. It was flawless, she confirmed every detail, never once tried to deny it, and was actually proud of herself to some degree once she opened up about it. She now trusted me more so then her husband of 8 or so years, hows that for a twist of fate? Comically enough, she thought I was there to trash her to our daughter and steal her away but instead I kept telling our daughter how important it was to listen to her mom. When the mother began to first talk to me she had said something to me that I had only directed to my daughter and she said it verbatim so I paused and then said to her, "you using spyware?" She had to admit she had it, she obviously knew that her explanation of why she said what she said wasnt flying and I must have known so she did admit it. The ironic part, when you do something like that, be prepared when that viper bites back. She found out things about her husband that not only caused her to insist on divorce immediately but she also intended on moving back with her mom which meant I would lose contact with my daughter. I had already decided to send my daughter money directly to her account because her mom slapped my hand away in 92, so this new talk of divorce from her husband she advises me she'd have to take me to court for child support. I of course told her to pound salt, it wasnt going to her household, it was my daughters money only. She still wanted to play hardball & I of course advised her to explain to our daughter why her money stopped going into her account and into my attorneys escrow account set for a trust fund that matured when she was 18. Knowing my daughter was a spitfire and would go nuts on her mom for taking away money she used to go shopping, I pretty much held the cards for a bit. I needed to assure a better anchor however and as I made her mom fall back in love with me which took all of about 30 minutes from when we first started talking, I got her to a point one evening that she pretty much attacked the soon to be served husband in an intimate exchange. This ended in a pregnancy which as I figured would keep her in the relationship with her husband regardless of how she felt about him. Hard to believe that she was as easy to read 16 years later. I was stunned, probably because I was the first to know about the pregnancy. LOL enemy to friend, go figure. I warned her that because I had visited that there would be question as to whos child it was and she became irrate over that comment, suggesting that she lived the life of a perfect christian woman, who went to church all the time, volunteered endlessly etc... Well for the record, she was a perfect christian woman when we met too, didnt stop her that time either. Well as if it was from my mouth to Gods ears, who do you think questioned it? LOL, our daughter. I almost fell off my chair. Thats what she thought of her mom, so gotta love karma.
My relationship with my daughter has always been driven by money. When she needs it, I hear from her. We used to talk all the time about all kinds of silly stuff but as soon as the money hit the bank, out the window with manners and her obligation to keep in touch. I know its teens in general and with the way shes been brought up, I could not even expect a thank you. Its like shes been brought up by cave people, sad really, but thats what happens when you arent brought up Italian I guess, lol.
I had lost my job in Oct 2010 and told her that I had to stop sending money until I was working again. Her mother of course wondering why my parents didnt step in. LOL funny, they drove 750 miles to meet their granddaughter only to be blown off in person, never receive even a Christmas card so I'd pretty much say not to hold her breath waiting for them to send money. If I could have reached through the phone to give the mother a few vicious slaps for being that stupid I certainly would have, it amazes me that shes that dense.
So my already limited contact with my daughter became even less and every comment I made on FB she would make a point of ridiculing me in some way, or being condecending to impress her friends that she tells her dad off when she wants. The exact same content in a phone conversation she'd be giggling away and adding sarcasm too it so I allowed her the 15 minutes of fame to be impressive amoungst her friends but I also stopped commenting altogether so what did she gain?
I had received a phone call from her earlier this year which was odd. She had gotten a new number and she was EXTREMELY chatty with me. It was like when we first met via phone, endless conversation, joking, fun, future, etc... I was still cautious though, it was out of the ordinary for her so I waited and nearing the end of the conversation the angle came. Asking about my job situation and about when I might be going back to work, never asking for money but shes slick, she waited a few sentences and advised me how expensive her cosmetology school supplies were going to be and how she'd have to work more because "mom" didnt have the extra money. I had an argument with her in mid 2010 that I accused her of only contacting me when she needed money so instead of learning from that, she decides that if she hides it in an hour or so of dialog, maybe I'd be dumb and naive like her mom and not notice her angle. She forgot that she got her inteligence in working the streets so to speak from my bloodline. You take street smart and book smart and drop them off at the worst part of town with nothing but a twenty dollar bill in their pocket and tell them you'll meet them five miles away, they are taking book smart out in a body bag & street smart you have to go in and find because they have started a new business which is making a profit already. Not hard to figure out really if you met her mom and I at the same time.
So after I got off the phone I put together a letter for her graduation which was along the same lines. All the chunky discussion up front, some mild drama in the middle and then the finale at the end. I advised her that as per her mother and I, once she graduated high school, I would no longer be sending her money. This was a test. I already knew she was destined to fail, she had her mothers famous silent treatment genes and I had to see if she learned anything at all over the past three years. That was June 1st, 2011, never heard from her again. No return texts which she commented to another friend she never misses any texts, triple checks her phone to make sure. I have documented proof I sent them along with proof she received via my carrier so it clearly shows I was just a dollar amount to her. Her trip to visit 4 hours away from my house, she never told me the dates, instead a wall post to everyone she was leaving in the morning to Disney. I had no prior notice of the week and it was one of those weeks that I had three lawyer appts, one was mediation, 4 doctor appts. She also knew that because of my divorce I needed extra notice for traveling with her brother and sister out of county from ex's attorney which with limited notice that was impossible and it eliminated 4 of the possible days I could have tried to race up there myself because I had the kids those days. Besides it being an 8 hour round trip just to meet for dinner, she doesnt think of the investment of time there either. Instead, she returns home and unfriends me on FB, LOL. Nice, very mature. I am sure shes told everyone that will listen what a terrible father I am that I didnt even try to get ahold of her and she even went to FL and I didnt even try to see her. I give her credit for the attempt but its a show and tell for idiots, morons and her moms side of the family. Any normal thinking person in the world would ask her a few questions, then might even ask me for the truth and see where this went sour. I tried so many times with her, its time for her to grow up and try with me for a change. In the end, shes a child that never really had a dad and I am a dad that tried so hard to bring her into my life after she was shafted by her own family and taken from me but at the end of the day, I have four other kids that appreciate me so reality is come aboard or continue to swim the sluggish waters of drama with her mom. Its not that hard to figure out.
It may sound like I am bitter. Not at all with my daughter, shes a product of her enviornment. Being raised by manner less people you cant expect her to be alot different. I wasnt hurt by her not acknowledging me for fathers day, I was more amused that she recognized Ryan Dunn & passed on condolences. It truly shows me where her priorities are, and as sad as this is to say, god forbid a fire broke out in her house, she'd grab her bearded dragon and run out the door rather than grab one of her sisters, not because shes entirely self centered but because she'd assume that her mom and step dad had the kids and no one would grab the dragon. Not ever considering that perhaps her mom might be overwhelmed and need help or perhaps in trouble. Its the generation as well but amplified by the way they are raised. There are glimmers of hope in her futuristic endeavors such as work and extended schooling so perhaps she'll be able to overcome it all. I can only pray.
Lastly, as if this post needs to be any longer, my other two girls. The 18 year old is trying to find her place in life and after making a poor choice, shes bounced back to right the wrong and I am damn proud of her. I chose not to inform her at all of my situation because I need her to truly focus and not lose sight of the goal. She was terribly upset the last time I was hospitalized and had her mother known she'd react the way she did, she never would have told her. The girls arent my blood but you'd swear they were by the way we get along. I love them both as if they were. I promised to always be there for them and offer advise as I have over the years so when I found out that I might have promised something that I can't deliver, it truly bothered me. I am not as worried as the oldest, 21 yr old as I am for the other. They have both been let down by their real father and I have stepped in to fill his shoes on more than one occasion. They never have to feel that they can't come to me about their problems no matter the topic, I am always there. I do have guilt about not telling the oldest, it seems as though she should know about it but with her being a newly wed and staring her life 3000 miles away, I didnt want her to become overwhelmed with the thought she wasnt here for me.
In closing I am really no further along in my decision to discuss this with any of my children. I just feel I must always protect them from things and even when things pertain to me directly, I still think I take the cautious road. I think as more becomes diagnosed and I have a better handle on it medically, then I might share it with one of them. Thanks for reading

What Symptom Will It Be Today?

I've never been so unsure of how my body is going to react to stress as I have been since the beginning of 2011. Having experinced everything from kidney stone issues to severe right side abdominal pain, to severe back pain & unbearable lower extremity pain, pre-syncope to double vision, demonic headaches to severe base of neck pain. Its a crap shoot which is going to be the ailment of the day and at first it was a running joke for me to see what I was going to be dealing with but now its really starting to interfere with my daily activities.
My stress load without getting into detail because its personal family issues and such is beyond the normal case load. As a result, each day I awaken with a different assault on my body to which I have to overcome in order to go about my day & should I become successful in doing so, meaning I am able to endure the pain and discomfort or extreme fatigue, balance issues etc... then my body goes for another knockout punch. Its as if someone has that VooDoo doll with the pins and I am being filmed and when they see I am being resistant to the first torture, its onto phase two. I am not a big fan of this let me tell you.
For the most part, the one symptom I have been able to overcome and pretty much ignore even though its so uncomfortable would be the chest pain that radiates down the left arm, into the left jaw and also effects the shoulder. The presure is enormous, concerning and if its your first time experiencing it, TRUST ME, its a 911 situation. I've learned as a 10 year veteran of angina, that for me the excessive pain doesnt leave any long lasting damage and all it seems to be now that I understand the nerve end of the syndrome, is a glitch in the ANS system that fires the heart muscle. So what I am experiencing is added beats, forced blood that causes uncomfortable pressure and sometimes the nerves become extremely excited causing excruciating pain. I've managed to live with this for as I said, 10 years now so that is one symptom that doesnt alarm me at all.
The lower extremity pain can be a real bastard on certain days and when the stress level for the day is maxed, even the experimental medication I am on to help control it is completely bypassed as if I had not taken it at all. Its so painful that taking a step is enough to make me want to cry to my mom. I end up walking like one of those wind up toys with the shifting legs because the normal up and down pressure of walking makes me cringe in pain and will sometimes make my eyes water. It effects everything from the knee down, all the muscles, toes, achilles, heels, ankles and has gotten so bad at times that it actually has prevented my foot/ankle from pivoting back towards me because the muscles have tightened so severely. Its something that doesnt go away by sitting, standing, sleeping, laying, hot bath, (hot water activates the nerves & makes you feel like you are cooking making it worse), walking etc... I have tried EVERYTHING. When I told my doctor that it even manages to bypass the healing capacity of the medication I am on, she can only sit there and wonder just how involved this syndrome truly is.
I have just begun to get on a more regular basis severe neck pain at the base of my neck which actually makes it extremely difficult to turn my head, I have to pivot completely from the lower back. I feel confined when this happens and days when it does if anything else piles onto the daily stress in addition to so to speak, then comes the most vicious headache ever. It goes from back to front, causes double vision and extended visual disturbances, and even feels like you have carbonation inside your skull. A very disturbing and extremely uncomfortable feeling that you cant shake no matter what your posture is and of course the more intense it gets, the tighter the neck muscles get adding to the fun. Taking anything for it is pointless, nothing works, just gotta let it run its course. Last night was one of those nights and I dealt with that bastard for almost five hours before it released its grip. I wouldnt wish it on my worst enemy. Well maybe one person.
The abdominal pain is still of unknown origin but extremely painful. I can actually hit the spot of the worst concentration of pain & cause severe nausea as well as almost setting off a pre-syncope event. I have had Cat-scans, with and without contrast, MRI's, Ultrasounds and the only thing they found, which I already had known about due to the mysterious bruising I had, was a hematoma that formed internally. Well that hematoma was a painful bastard because of its location but after it vanished, the pain in the other area was never fully diagnosed. Maybe its another hematoma forming in a more dense area that is causing a more painful out come for me, its hard to say because at current time, the tests all show that there is nothing to be concerned about. Something I have heard for 10 years from doctors here and guess what, I have something to be worried about, its called Dysautonomia! A hematoma that forms without trauma for someone that has ANS disorder quite possible has weakened veins & arteries which explains why they constantly blow my veins just drawing blood. This makes me extremely vulnerable to embolizims and thats kinda scary knowing that its like a silent killer that can happen at any time. Very comforting. Just better wait if I am in the middle of RHONJ, dont be messing with my reality TV!
The pre-syncope and syncope events are concerning but usually can be manipulated and prevented if I am able to detect the earliest signs. Alot of times I have a very distinct visual issue that causes every object I am focused on to suddenly have extremely definitive lines rather than natural blending lines with the surroundings. This is usually followed by a slight rocking sensation even though my body doesnt move, my mind is broadcasting movement, this is the stage for the spin leading up to the dark shade light which is the blackout. This you fight by excessive movement, in a safe stance. You have to recognize that you could go down so you have to brace yourself so as to not do that and start the procedure to fight it. Most times, I'd say 95% or better, I have been able to fully over come a pre-syncope event but not without consequence. It sometimes leaves me drained physically for days. I need upwards of 12 hours a day where as normally now I am an insomniac how if lucky sees three hours a night. The pre-syncope/syncope event you most cautiously have to watch is the white light and out. This one is quick and leaves you almost no time to prevent. I have had only a few and every time its defeated me. I feel something coming on but before I can react, its white light and out. This one will often get me when I am sitting down which fortunately prevents injury. My last one was during my tilt table test and had the nurse not returned me to the lying position and kept agitating me to keep me alert, I was out for sure. It hit me fast a furious and I dont remember a few minutes of the testing so perhaps I was out but according to her notes, she said I remained conscious.
The fatigue, both mental and physical is an amazing phenomenon. If you paid me to believe it was possible, I'd tell you it was bullcrap but having it happen to me now, wow, totally mindboggling. It causes your mind to become so tangled that solving simplistic problems become impossible, name recognition seems like the hardest task since SAT's, remembering what you did 30 seconds ago, man you better have survailance cameras because its amazing how lost you become. I have found the remote for the TV in the refridgerator, not the one on the kitchen, the one in the garage used for beverages only. Have had to throw away perishable items because I left them on the counter for hours forgetting I even took them out in the first place. Stuff of that nature, very scary that your mind just skips. Try doing laundry with the lid open on the washer, I can tell you, it doesnt work. This is everyday for me, numerous items misplaced, forgotten all because my mind starts to take on more than it should and begins to misfire. So much for taking amphetamines to correct it! The physical part, holy crap! I was so bad the one day that making a sandwich was a project. I had to use a butter knife to cut the sandwich in half out of fear I would cut a finger off of the sandwich holding hand with a sharp knife. It was as if I had the knife tide to the tail of a really happy dog, it was all over the place. I was shaking so much I was afraid to get near anything but paper plates. I sat there on the couch in disbelief that I was this bad off and for no really good reason. Knowing what Michael J Fox endures daily makes a believer out of you that no man is invincable. The Parkinson side of this syndrome is at its worst when the body is fatigued. My medication that controls the normal shaking I have doesnt even touch the effects that happen at this stage, like I said, its as if I have no medication whatsoever to control my symptoms.
In closing its safe to say that each person that has Dysautonomia will have a different reaction to issues than the next person. We all share similar symptoms, but not all of us have the same complexity or the same triggers, medications may work for one person and not the other etc... Its each person for themselves in finding your overall control function but in the wider spectrum of things, we all can come together to share our struggles and triumphs to help the next person deal with their issues as they travel in our shoes. Thanks for reading.

About The Bucket List

I have spent countless hours on the internet researching ANS and its many fingers of offset sister diagnosiss' and although a form of progressive Dysautonomia is not cureable & hard to fully control, I find it very difficult for myself to feel as though I need to create a Bucket List. Yes its true I have all the most dangerous ailments of the syndrome that basically are the Grim Reapers dream list but to give into it as factual seems to me that I am giving up & that I am not willing to do.
First of all, I have my children to grow old with & enjoy their many accomplishments as they cross each milestone in their life. Being a mid-40's father with biological children ranging from just shy of 2 yr and oldest just shy of 19, then my lovely "adopted" daughters 18 & 21, the mere thought of not seeing the next big thing in each of their lives is just overwhelming to me. If I had to define Bucket List for me based on all my medical abnormalities, it would be a never ending and changing list of things needed to be accomplished. Yes I want to some day have dinner with the Manzo family, who wouldnt, thats truly one of those items that you put on a Bucket List if thats what it takes to help you reach the cemetary a completed soul. However, for this Jersey guy, seeing my youngest turn 2 in November, thats a goal, followed by her turning 3 the following year and so on. My son turning 7 was awesome, I was there and for his 8th, I plan on being as well. My oldest biological turning 19, well she lives in SC so wont be there for her birthday but I want to see her over the holidays if I am feeling well enough, another goal followed by the same the following year. My other two Angels, well got to be the proud dad seeing one get married, the oldest so the next venture, being a grandfather, this too I will be there. The 18 year old who has just turned 18 this past April, seeing her find her path in life will be a happy day for me and each year she stays on this path, I will be there to raise a toast.
I wont lie, I wake up sometimes in such bad physical condition that I can hardly walk the necessary 12 feet to my medication in the kitchen and on days like that I find myself just sitting on the couch all day long only using the bathroom or getting something to drink. I dont ever sit there feeling sorry for myself, or have a "why me" perspective, instead I took up a hobby, Twitter. I now follow some of my favorite people and tweet with them, comment to others or abuse the haters that cross the line with my favorites. Its all about making the best of your situation and never giving up.
I made a list when I was 16 of things I had to do prior to getting married and some of the things I cant write here because this is a family blog site but never the less, at 16 naming some of the items were relatively outrageous at the time and just seemed as though the list was going to be a complete joke rather than an actual premarriage contract. Well as fate would have it, I actually completed that list before I got married, the last two items were when I was 29 and both accomplished with the same lovely girl. What turned out as a joke one night between two alcohol induced teenagers, actually became a reality in my life. So after the completion of the list I realized that by setting your mind to something when you have a determined and driven personality, you need to carefully watch what you wish for. Hence the reason a Bucket List is never an option for me.
I have not put forth the fulll effort I truly want to as of yet in regards to St Jude Childrens Hospital. My inability to work, limited income & resources have me on a very low scale monthly donation regiment. I so badly want to make an epic donation, one that truly honors the memory of my first love, Katie who lost her battle with luekemia back in the late 70's. I also want to become involved with charities closer to my home base, Bergen County NJ. Tomorrows Childrens Fund & Project LadyBug are two that I hope to be a part of very soon. TCF was founded by several parents & one of those parents was a very close family friend of ours. He built a large wing onto Hackensack Hospital, had countless fund raiser with numerous high end celebrities and sadly, with all the money raised, all his resources, both him and his daughter lost their fight with cancer. You can have all the money in the world, without your health you are poor.
As for Project LadyBug, well its not only a Jersey based charity but its organized by two women I admire not only because of their continued class on TV but by their words of wisdom. Manzo sisters Dina & Caroline from Real Housewives of New Jersey, put forth their efforts to make a difference in the lives of children stricken with cancer. I had no idea this charity existed until I began to follow Dina on Twitter, she'll be forever idolized by me for making a difference with this charity as well as Caroline.
So you can see that I have too much going on currently to even consider the idea of a Bucket List. Dysautonomia may control me but it doesnt own me. Everyday I open my eyes is another day I beat ANS and its many capable ways of extinguishing life. I am a stubborn Italian/Irish, Bergen County native, born Aries guy who refuses to allow an annoying Central Nervous System malfunction to disturb my goals. I'll continue to make fun of it, make light of it, beat it. Thats what I do because I can!
In closing I want to just say that what brought this post on was a tweet I received about a girl who wanted to trend as one of her goals associated to her Bucket List. She was a 15 year old girl from the UK who has a terminal form of cancer. It really hit home for me to realize that a 15 year old girl has accepted her fate and has found the courage to fun with it and do what she needs to do in order to complete her lifes goals. As much as its extremely depressing because of her age, its also triumphant if it truly brings her peace. My prayers go out to her and her family. For a girl I never met, who lives an ocean apart I am pretty sure I'll never forget her trending attempts #alicesbucketlist. Thanks for reading

The Complicated Cardio VS Gastro Symptoms

I have been able to go back in my life and pinpoint all the times this ANS has crossed paths with my life and in some way or another caused me a certain level of discomfort or a medical impossibility that had doctors scratching their heads and just ordering medications & tests more so for curiousity then anything else I think. This couldnt be more evident then the case of the 2001 ER visit with chest pain that has the ultimate history of all my hospital visits. Of course now, revealing the Dysautonomia connection, EVERYTHING makes sense but to the doctors involved back then, no one in the world was even on the page of an ANS dysfunction especially 10 years ago in a smaller Florida city.
Having arrived at the hospital with the tightness in the chest and some rather classic heart attack symptoms such as left arm numbness, left shoulder pain and into the neck, very pronounced heart rate disruption etc... it wasnt hard for the admitting RN to evaluate that something wasnt quite right based on entry blood pressure. Now they do take into consideration that if this is your first time with chest pain, BP will be elevated due to nerves and such but once I was IV'd, blood was drawn, Nitroglycerine was administered and suddenly my symptoms were beginning to fade away. So this is a testing tool for the doctors while the blood test is being sent out STAT, the Nitro being able to subside the issue allows them the possibility that this could be a valid pre-heart attack event that was caught at just the right interval so as to not cause major damage. The EKG will show severe interruption, damage, previous rythum issues but its not always acurate for things that are happening now or are happening so you are on constant telemetry until they can evaluate all the evidence in your case file so to speak. I had gotten some Morphine as well and it was the point at which I realized that I had a severe tolerance to the levels they gave me. When I requested more for a lingering area of my chest that was still proving painful the nurse looked at me cross eyed and told me that I had been injected with quite a large dose already and she'd have to get it approved. Of course I am thinking to myself, "am I not in a frigging hospital to resolve pain issues? START PUMPING MEDS WOMAN!" She did get another dose approved and commented that the doctor would be really watching my levels, it was then of course that they ask if you do recreational drugs. I have NEVER done any recreational drug or smoked even a cigarette in my life. I did however drink enough alcohol to support most of the bartenders in NJ, NY & PA so that probably assisted in my ability to resist the function of Morphine. Of course fast forward 10 years and I know that it was the Dysautonomia that actually didnt allow the Morphine to work. It was responsible for firing the nerves that caused me to be there in the first place so it was also responsible for the outcome of all testing and relief that was going to be happening as well. Its like having an evil twin inside you in a way.
The first blood draw was negative and two more would follow 8 hours apart so that automatically decided for me that I was staying the night. If you suffer any kind of heart muscle injury, your blood enzymes are erratic and will flag the chemistry team. Most people that suffer small attacks usually get past the first blood draw with a negative result & sometimes the second but seldom does someone who has had even the smallest of attacks get past the third draw without detection. What confused me on the blood draw issue and each of the numerous times I ended up in the hospital for this exact set of tests is why they need to stick you each time rather than use the IV line. I HATE needles, even when they came in to test my blood sugar, that little prick on the end of my finger, I swear if I had known what that was all about prior to him doing it I would have asked my wife to move aside so I could have kicked the SOB right through the sheet rock. Again, now knowing about the amplified nerve pain brought on by the ANS, I know that I wasnt being a baby about it, I just have a different pain level index on certain areas of my body then others do.
The cardiologist arrived and he was pretty confident that it wasnt a cardiac issue however due to job description & the fact that I had been to that ER before with a baseline EKG, he felt that safer was better than sorry. So the following morning I was going to be scheduled for an Echocardiogram with & without contrast and a stress test. Sounded good to me, nothing like some expensive heart tests to get your blood pumping in the morning.
The one thing you'll need to remember about being admitted to a cardiac observation floor is that there is NO SLEEP. I dont mean this as a joke, this is as serious as could be that by the time they wake you the 20th time you either want to have a major heart attack so you can sleep in intensive care or you try to evaluate if any of the drugs they administered will give you grounds for temporary insainity when you strangle them with the TV remote cable. I have literally done the cardiac floor a good 9 to 10 times and EVERY time I become so angry with the nurse and CNA that I am surprised I dont have that heart attack. It might be their intention, provoke an episode so it saves the doctor time and effort but my God, its so annoying. I understand they need to do certain things every four hours, thats wonderful but they manage to make it so that the RN's four hour project with you is over & just as you doze off again, here comes the CNA to do her four hour project. So now you have them every hour & figure you are in the clear until in walks the phlebotomist ready to draw blood on the third hour. So its a constant revolving door and if you get an hour sleep solid its amazing. Gods honest truth, my first time in and deep into the wee hours the nurse wakes me up and says to me, "The doctor wrote you a prescription for sleeping pill, would you like one?" Notice I said, "WAKES ME UP". Yes this did happen. Now even with my extreme lack of sleep, I still have available to me a very wicked humor/sarcasm/anger option in my mind that can strike without being sensored so my response was to her, "See if directly under that prescription if he comments that if you need to wake me up to ask me this if I have permission to hit you with a bed pan directly across your head?" Not sure where this lady was from but all she said was, "so I'll say you declined it?" I just closed my eyes because any further engagement of any kind with her was going to cause a visit to the ER and not for me.
So bright and early in the am, 0700, I was downstairs preparing for my tests. No sleep but I knew that if I passed them I was going home! So the adrenaline from that was enough to get me rolling. I had the first phase of the Echo which happens prior to the stress test, kind of a baseline to see how things are working before they get you all fired up. I was then hooked up to the stress equipment & the tech noticed that I was beginning to slump over, I was having a pre-syncope event. I became overly drowsy & I thought now the lack of sleep had caught up with me but the doctor was immediatly called into the room and he jumped into action. He started to watch the EKG sheets as they were now beginning to print out. He saw something in my EKG that wasnt there the day before, however it wasnt something that a cardiologist finds concern with. Instead, he said, "this is cardiac, this is gastro, you have T wave abnormalities". WTF do I know doc, I feel like crap is all I am thinking to myself when he says "yep definately gastro, BUT you're already hooked up here, lets do the test so we can confirm 100% the heart is out of the race". This is just what you want to hear when you almost pass out that someone is now going to pistol whip your ass with the intentions to fully stress your heart out hoping to cause it to fail if theres a problem. I couldnt help but notice the crash cart all covered up in the corner so even though I felt as though I was dying I couldnt help but to crack some Jersey humor in that room to make myself feel better. I asked if the thing with the paddles in the corner was for making grilled cheese or were they going to pull it out as a precaution in case I went down for the count"? The tech was laughing outloud but the doctor was apparently aware I was from NJ, he just said that he had up to four minutes to decide shock or pump life back into me. I knew I was in good hands.
I of course passed the cardiac tests with flying colors and the cardiologist even tried to view the gall bladder with his Echo ultrasound equipment but it wasnt set to view that part of the body. He just told me that while I was here, he would get a gall bladder test ordered STAT while I was still NPO (Nothing Per Oral) and have some answers finally as to why I was in the hospital. I guess I was excited that I had T wave abnormalities, why not right? Well now of course understanding Dysautonomia, ST, T wave abnormalities along with negative test results for pretty evasive testing, its a huge red flag for ANS disorder. Again, who would have known.
I ended up having my first "upper & lower" as the lay person calls it. An EGD/Colonoscopy which I can tell you now, asking the techs to do the EGD first so your breath doesnt smell like crap just to lighten the mood doesnt really do that at all. They take their job a bit serious so my humor, not wanted. The prep was the worst part of the whole ordeal. Had I known it meant another night in the hospital & 431 trips to the toliet seeing things leave my colon that I consumed in grammar school, I probably would have opted for the out patient option. They feel it necessary to use one ply toliet paper as well rather than having compassion and giving you a box of wet wipes. Anyone who has had this done knows that if your home, wet wipes are gospel, in the hospital, they pretend you are enjoying the 80d sandpaper they have in the bathroom marked toliet paper. An aspirin/Tylenol is between $6-12.00 billed through the hospital. After the 7th trip to the bathroom a box of wet wipes could easily be billed $512.00 for 50 quantity and for sure, NO COMPLAINTANTS!
So after all said and done, both tests done, I find out that I have a rare case of Tourettes Syndrome coming out of anesthesia. This I did not know but given the fact that all the nurses including my wife were mouth wide open, gasping for air and firing away at Rosary Beads, it was obvious that any future procedures involving a full sleep it was important that I let them know what might happen. They not only knew I was apparently not happy with the assisting nurse in the procedure room but they also knew what ethnic background she was and had heard racial slurs that made Satan cringe. I am not that type of person in the awakened state, I like all people provided they are good people so not exactly sure what happened, not one person wanted to repeat anything that came out of my mouth. Good thing I havent seen it on YouTube either, I guess I'd have alot to explain there! I later had several Tourette issues coming out of anesthesia and although I have no memory of the incidents, the only ones that ever repeat portions of it will be the male nurses. The one said that I would have made Andrew Dice Clay look like an altar boy, wow thats a scary compliment! Without getting any further off track, the test results were negative and I was cleared of any types of gastro issues which meant I was referred back to cardiology.
I left the hospital after the gastro testing and really had no further information then I had when I went in other than I had T wave abnormalities. I probably should have begun to really research the hell out of that back then but I never felt I had to doubt the medical professionals before so I was willing to wait for the next time something when a foul. It turned out I didnt have to wait long, I was back in the hospital within a week but this time I went in via ambulance. I went out of commission while talking to the bosses wife in her office. I wasnt feeling well or looking good so she suggested I sit with her for a bit and after about 15 minutes or so I slumped over and it was curtains closed. Next thing I remember was EMS guys working on me to start IV, I was still in the seated position in the chair but now I was starting to recall things around me. They took me out via stretcher and I was once again at the same hospital. The same routine, blood draw, IV, Morphine and wait. Cardiologist came in and was extremely reluctant to proceed with the next level of testing. It meant the super evasive Catherization which has a list of complications when a doctor is going in to correct something, they certainly dont want to go in just to look around. My wife assured him that as a nurse herself she was puzzled but asked him to please figure something out because it was obvious something was happening and it needed to be resolved before I really did have a major issue. They always asked about stress and I was never one to have stress issues. In school, pile on the detentions, suspensions etc... no big deal, I'll take my punishment with a smile. At work, I always did 125% or better so never had issues with performance and as far as customer relations, I was the master at keeping things under control. We were newly weds for the most part so that wasnt it, the only thing going on was the fact that my wife decided that she needed, not wanted, needed to move into a "normal" house now. We originally had a premarriage plan to stay in a friends duplex for a couple of years to save up money, it was really low rent & for the most part a nice place for a couple, just not adequate for someone whos parents were living the 7 digit dream. So I was not really happy that we were now looking a year or two earlier than planned and pressure was on heavy to purchase. Knowing now that Dysautonomia takes and amplifies stress in an internal, disfunctional fashion and causes involuntary body functions to fail at will, it makes such sense as to the timing involved and how I was being pressured to go outside my comfort zone for this house issue. Externally stress just bounced off, internally, it was shutting organs down, I really love finding that out after the fact.
I had previously posted the results of my Catherization so I wont go on here but I will say it was negative for any visible internal glitches within the heart muscle and or any damage that had been caused by my past two weeks episodes. My cardiologist was now fully convinced it was not cardiac in nature and once again assured me it was gastro. He suggested that something was overlooked and that I should have further testing done to confirm for sure that the gall bladder wasnt the culprit. My cardiologist suspected the gall bladder from the first time he saw the T wave issues and it was 18 months later, numerous tests including a gall bladder dump test with dye that was also negative, CatScans, Ultrasounds, then due to an insurance change to an HMO with my wifes employments change, I then saw another 4 cardiologists along with more ER and overnight hospital visits. I had nuclear heart tests done, more stress tests, I was on as many as 6 heart related medicaions at the same time which caused me to not only have the most mellow heart rate it also calmed me to the point of a walking coma. I could have Jason from Friday the 13th, Jack the Ripper and Michael Myers running at me ready to do their thing and I would be cracking open a diet beverage and perhaps having a few crackers as if I had no where to go. I was also being monitored by an Internal Medicine doctor that would watch the levels of my bloodwork which were at times so outrageous that he'd call for a retest because my liver enzymes were in a range that were unbelievable to him. After the second draw, he'd see it was a legit draw and then order several other draws until my values dropped to normal. This would take 10 days or so and no answers as to why it happened. Again, Dysautonomia playing with every area of my body it could and causing all these doctors to go out of their minds searching for solutions.
The 5th cardiologist in the HMO group stopped all the other wild medications saying it wasnt heart related and basically booted me out of their groups care. I was relieved but right back to square one. Now I had no extreme medication blocks ready to combat an attack so I had to be ready for anything. I was able to go back to the previous cardiologist that started everything and now we were a year and a half past the original episodes & a super load of other testing had been done as well in other areas.
Later in 2002 almost 18 months after it all began, I had a new symptom. The chest pain, arm pain etc... was controlled by Nitro I carried with me at all times but now I had severe right abdominal pain that was so unbearable that I couldnt stand, sit, walk or lie down without severe pain. My Internal Medicine doctor admitted me into the hospital and I had 3 days of intense testing under not only him but a newly advised Gastroenterologist and I was NPO for all of the 3 days. Worst part was having all those test come back negative, blood work so extensive I was even tested for affects from the Moon Walk and still nothing. I was beyond pissed. I finally had something to eat and drink but within a short time of eating, the severe pain had resumed & I was beyond miserable. A long 3 doctor, my wife & I debate began about exploritory surgery which the surgeon was literally accusing my wife of purposely putting me under the knife for no reason. No evidence whatsoever supported any findings of any organ especially the gall bladder of failure. It was literally going to be a surgical exploration. There was a definate no from two of the doctors that gall bladder was a problem and a possible 10% chance from the other. I was about to undergo surgery based on 10% confidence of finding an issue. I was so miserable that I was prepared to go with 0% chance. Surgical time set, and the next morning I was wheeled to the OR for surgery.
I woke up screaming in pain, thought I was still in OR having procedure & a nurse was yelling at me that I wasnt premitted to speak like that, whatever that meant. Then I could hear the words I was using, wow consciously saying them was making me blush I couldnt imagine what I said prior to realizing what was being said. They pumped me so full of Morphine that they advised my wife that I had a full days dose right there and then and with that I was unable to really yell out anymore, it was all internalized. I could hear them and I was yelling to them more meds, something stronger but words werent leaving my lips. I could hear them say that my vitals were off the charts, heart rate, BP and especially my breathing was extremely erratic and labored. My body was fighting the Morphine rather than letting it help calm the pain. So now instead of being able to verbalize how excruciating the pain was, they had put my mind in twilight and I could hear them but they couldnt hear me. What an experience let me tell you.
In the end, surgeon arrives to say that the gall bladder was diseased, not the conventional way they are used to seeing it, very hard to detect even with a visual. But again here we are with Dysautonomia fully undetected and its ability to inflamate areas by cause nerve interruption thus creating the illusion of a failed organ. Notoriously speaking, Dysautonomia loves to assualt the gall bladder because of that organs ability to mimic other bodily function errors. Its an easy target and without the presence of gallstones, its almost completely impossible for modern medicine to confirm a gall bladder failure. It takes a surgical intervention such as mine to even view the possibility of an issue. Had ANS disorder ever been discovered, I might still have my gall bladder today. There was talk of a Tilt Table test being done to me in early 2002 and I wish it had been, I am confident that something would have come up during that test and I would have saved years of heartache, dispair and nightmares related to health.
In closing its best to not necessarily challenge a doctor to proceed but I think to take not to the fact that I had some really disturbing complications that caused me to go so far as to do a heart catherization and the exploritory surgery. Thats why I get so aggravated when someone says it was in my head, as if I would voluntarily subject myself to that kind of torture because its a mental illness. Yea, sure, read up on Dysautonomia doubter and educate yourself so that the next person like myself that comes along you know what you are doing. Thanks for reading

Exploring Options With Family Doctor

My visits to my family physician used to be somewhat simplistic, a followup from an ER or hospital visit which basically just kept her in the loop and always kept her guessing why all these wonderful things happened to me. Well now we have Dysautonomia to discuss and although we have an anchor point to deal with we still have the unknown avenue of diagnostic to contend with because my area to which I live does not offer the level of genetic specialists needed to pinpoint the extent of "fingers" this Dysautonomia has grasped me with. We have discussed today alone based primarily on symptoms, the presense of NCS, JMS, ANS, ME/CFS, & the possibility of EDS all being linked to my situation. Sounds to me like I need CSI to call FBI and investigate the CIA of my internal body functions! What scares me the most is that my doctor can use all the abbreviations and I know what they mean, thats the scariest.
She offered the possible use of a Nuero-physcologist which I have already met with one after my TE back in March 2010 so the fact that the report was never faxed to my family doctors office, she now wants a copy of this report to verify that the avenues of diagnosis for specific nuero interference have been properly explored. With the presense of NCS its something that can pass by undetected in all the MRI's, CAT Scans, EEG's and random cognitive tests done by a nuerologist. So now we have to look back to see if this Nuero-Shrink crossed the T's and dotted the I's.
We discussed the possibility of panic/anxiety attacks which I shot down almost as quick as the words left her lips. I am without a doubt one of the calmest people most of the time and to get a reaction out of me sometimes takes an act of god so that was highly unlikely. I had monitored my pulse during my Monopoly fiasco and it did not elevate, breathing sustained normal, no pre-syncope and no evidence of hyperventilation or abnormal pressure in chest which would lead to a feeling of "loss of control" as most people that have PA tend to feel. The strong possibility of ME/CFS is definately on the table for discussion and I think we strayed away from POTTS and are turning towards NCS as far as the syncope events are concerned. I am still waiting to get the complete results of the Tilt Table Test from the EP doctor, that will be on the 29th of this month.
So for now, its still the mystery game but in a different direction. Its knowing but controlling has become the issue now. What medications to use, tests to run to confirm types of syndromes present, overall life changing effects that were not present in 2010 but now are part of my future in mid 2011. Being 44 and suddenly looking down the barrel of a possible dissability situation is something that has me stunned completely. I have without a doubt done more physical labor in my life since the time I was 12 until about 1996 when I split my sternum then most people will do in their entire life time. I have worked 100 hour work weeks, worked 7 days a week for six months straight without a day off and did it because my boss needed me. I showed up to work two days after having a heart catherization when I was told to take 10 days off. Was back to work the day after having a 6 inch incision in my left hip to remove a lypoma, my doctor thought I was totally wacked out of my mind. (no pain killers either) Chopped wood all weekend with my father when I was 15 after returning from the ER for Xrays on my wrist to determine if it was broken or not. They sent me home in a removable cast and with every strike of that axe, I cringed with pain but kept going because it had to be done. Found out that following Tuesday after the holiday Monday, that the radiologist had made an error, my wrist was broken and I needed to go to have my wrist set. I unloaded close to 500 bails of hay with one arm right after I broke my collar bone. I was in a body strap & sling and still did the work because it had to be done. So to now realize that my body is slowly trying to take over and keep me from being in control, its ego deflatting. I am not used to it at all. I do however realize that under the circumstances I could never be a loyal employee having to go to so many doctors, having to deal with so many physical issues daily and the ever looming presense of an ER run lurking in the background for days that my body just says FU buddy. So take all that into consideration, then add in the fun of being unemployed and living on a tight budget with thousands due in medical bills how does one not allow stress to happen? Yes I realize that this is a stress driven syndrome, how about giving me the 6 numbers required to hit the lottery and we'll illimunate the stress that way? Its easy to say to someone, "lose weight, dont stress, dont worry, chill out etc..." but its not so easy to follow through with the demand when your life is a cluster fu.... of stress piled high with more stress. I used to love stress, made me work harder and focus but apparently my body went on strike and now I am alone on that voyage.
I like to keep it real. I am not afraid to speak it like it is and that sometimes causes others to become uncomfortable with my way of verbalizing. I am very open about this syndrome and the effects its had as well as the effects its capable of. I also know its ability to shut me down indefinately, its a reality which I speak very openly with my doctor about. She likes that I have a grip on it so tightly because most people go fetal when they are told they have a disease/syndrome thats killing them, but for me its an insult to which I am prepared to fight the bastard win or lose. Yea there are days that you think about how much it sucks you could potentially miss so much of your kids life as they grow up but thats the negative stuff that has people going fetal. I prefer to make each child birthday count, each holiday memorable and each time I purchase a calendar, its a good year. From what I have read mostly on the syndrome anyway, it gets you in your sleep so what control do I have over that? Just one less day I have to make my bed is the way of looking at it.
I have read many forums about how people like myself, suffering from Dysautonomia, have to or should go to see a shrink. Ok, why? So I can boo hoo on someones shoulder about "why me'? This is therapy right here, talking about it in blog form. I feel alot better each time I post something. Not because I needed to get something off my chest but I feel if just one person someday reads this and its someone that needed help in determining if their symptoms were making sense to my diagnosis and it saved this person from a live long misery of doctor/er visits, then there is no better healing process then that I am afraid. What I do know about people that see therapists/shrinks etc... is that they only offer things that they feel they want corrected leaving out the true meat and potatos of whats really wrong with them. A therapist isnt a mind reader so if you go in telling them something about your life and only give them 60% but they feel its your 100%, when they diagnose you Post Traumatic Stress Disorder based on "baiting" technique, it sells the true art of therapy right down the river. Having an online diagnosis of yourself, confirmed by a friend who contacts the therapist prior to your visit, and then only offering details that walk the therapist right into the diagnosis you want to hear is manipulative and is actually the work of a bi-polar patient rather than a PTSD patient. So I have to say that others abuse the art. If I were depressed, or misguided in anyway, yes I would go immediately but at this time, given the circumstances even, I am in rather good spirits because I know I am doing all I can to move forward with this syndrome as an anchor but I wont let it hold me down completely.
In closing its best to say that finding a family doctor that is 100% on your side in listening to your symptoms, assessing your complications and never giving up on you. When you have Dysautonomia, you consume a good 25% of your family doctors time and effort. Long after you have gone home for the day, you are on that doctors mind day and night because everything is there but the final diagnosis and the ultimate goal, bringing relief to a patient. No good doctor wants to fail and will make giant steps to move you towards finalizing your overall syndrome needs. For me that path has begun and its a long hard road but I am prepared to travel it no matter the outcome. If you come along for the ride, just keep reading. If the blog posts just stop, well thats when you know that I lost and Dysautonomia won. I usually try to post within 10 days at the latest. You can always follow me on twitter @poolplayer123 I am always tweeting because I do it mobile and its easy regardless of how bad I may feel that day. Thanks for reading.

Revisiting Fatigue With Known Catalyst

I had previously posted the mystery of having the overwhelming sensation of both mental & physical fatigue almost take over my body to the point that I felt as though I was three times my normal gravity pull. I wasnt sure exactly what caused the situation, only what I was doing at the time of the incident which was playing Monopoly and I had also indicated that I had bypassed an article about the Dysautonomia connection to impairment and or fatigue brought on by solving simple math problems. At the time it was hard to immagine, but after the fact, I had wished I had read the article in its entirety to see what exactly I was dealing with.
I spent the better part of the next day trying to create the same type of crippling effects that I had done the day before with the Monopoly and I was completely unsuccessful, this included doing bills, reading, researching and pretty much over working the brain so I could duplicate the incident and better understand it. My efforts were all in vain and I just kept looking online for more and more information in regards to that issue but I had not found anything helpful. My history recheck was not as of yet helpful, I hadnt realized just how much research I had done in the past 8 or 9 weeks. I had visited so many sites, forums, blogs etc.. that it would take me a good week to revisit all of them. I would imagine its going to be a needle in a haystack to find that identical article. Of course the information in regards to Dysautonomia in general lists brain fog, short term memory loss, confusion, inability to recall familiar areas and so on, its not the same connection thats bugging me to death now. Having OCD along with all of this isnt helpful because now its a mission to find that information in direct regards to the math issue.
My son returned for a short visit and asked to play Monopoly and for a moment I chose not to play because of timing issues but then I thought perhaps the stimulation of the game might just be that correct irritant I needed to become symptomatic so I could better evaluate & confirm the possibilities of what I was dealing with. I accepted his challenge. As the game started, all was well, I was sharp as a tack no math problem to large to do in my head as I have done for all the years of my life. As we progressed into the middle part of the game, I noticed a decline, not so much in the ability to solve but in the ability to maintain the information (A+B=C I would forget either A or B and have to ask my son to repeat one of the two). The game went on and as we got further into the game, the decline became more and more evident and before long, the physical fatigue began. I had begun to lose the comfortable use of my arms, now each dice roll felt as though I was rolling cinderblocks and my shoulders began to ache. I had severe burning in my legs now which I had not had before, it was only isolated to my toes and I was becoming not only extremely uncomfortable but extremely agitated and angry. I felt a complete transformation of my personality due to the overwhelming effects that this game was now taking on my body and mind. I kept fighting the side effects because as much as it was killing me, I knew that knowledge inevitabley will be power. The more I know about what plagues me and how, when, where, the better equipped I will be to deal with it.
I pushed on, by now math was almost impossible and I was saying everything outloud over and over again so that my son would hopefully answer it because it was now taking me upwards of a minute or more to figure out how to make change of a five hundred dollar bill when a three hundred twenty dollar property was purchased. This extended torture now led to the inability to read the Chance & Community Chest cards, my vision had become so impaired that I could not even read. It was double/blurred vision and I grabbed my Blackberry and also realized that I could no longer read my text field. I was really pushing it hard now but where do you stop when everything you have going on is your body essentially messing with you?
When my vision was impaired the last time in 2010, I went from 20/10/ 20/15 to 20/40 overnight. Doctor of course said that due to age it happens, sight one day, nothing the next. I called bullshit because in my world everything has an explaination, I dont go for the cop out. He wrote me a prescription for glasses and the only thing that prevented him from pushing the issue was a black box that blocked my field of vision which he could not diagnose. I was sent to a Nuero-opthamologist that became frustrated when my tests would vary each visit. He sent me to a retina-opthamologist to further the diagnosis and find the illusive black box. The retina specialist also started with the same bs about age and losing sight all of a sudden blah blah blah but for some reason he was stumbling over his tongue when he returned to find out that I had retested at 20/25 & borderline 20/20. Whats the matter doc, is it a miracle or were you perhaps premature in running your mouth? They never did find the cause of the black box, I did this past year on a Dysautonomia symptom chart of things that happen less frequently to some patients.
So getting back to the game and my slow decline in mental function and sudden physical dispair, my neck had become so stiff that I could hardly turn it and I was having problems completing sentences. I used the wrong words, or would get so far off topic my son would look at me like I had a polar bear crapping on my head. It was then that I decided to stop the game, I was afraid that the progression might lead to a more severe complication that could leave me incapcitated and I wasnt ready to risk that.
When I stood up, I was visibly shaky, dizzy, unstable but no signs of presyncope. Heartrate was normal for the most part and I just move slowly with the wall near by. We moved to the couch and I just fell into it. I was demolished. His mom called and made arrangements to pick the kids up which after this was a god send. I forced myself to get up and dress Gia while we waited for their mom to get here.
After they left, I made lunch, having to lock my knees so that my legs wouldnt shake so severely, my arms were so fatigued that even cutting the bread seemed like the hardest task, I was totally shocked. I retreated to the couch and began to eat. That was over four hours ago and I still have severe muscle fatigue to the point that even the slightest physical function causes shaking. I need to sue the makers of Monopoly, I didnt realize it was such a deadly game to play.
So now the hard part, finding the connection of syndrome to the catalyst which in this case happens to be Monopoly. I had far more symptoms to play with so I kept hitting them in until I was finally able to not only connect with a good possibility but I come across the whole mother load. Every detail right down to the visual and along with all of it lies the mathematics difficulty, fatigue etc... Each time I come across stuff like this I am always first blown away because its like I wrote it about myself but then I am like, damn some other poor soul has this same crap? To hit upon something that links up identically to exactly what I experienced brings me great pleasure that I am not losing my mind but I know that finding a dr in my area that isnt going to want to send me in for yet another mental evaluation is always something I fear. Nothing worse then telling someone the truth, proving it and have them still want to find a reason to disprove it because its "complicated". Well Dr Douchebag, ever think of what its like to HAVE the issue? Maybe thats complicated too. My family dr isnt the problem, its the specialists I have to deal with. My Nuerologist, who by the way overlooked EVERYTHING as far as I am concerned and should have picked up on this, is one of those doctors that scratches his head with disbelief, kisses my ass with the "we'll keep trying buddy until we get it" and then dictates in his reports "highly recommend mental evaluation of possible underlying past trauma". Well, already went to your recommended dr, he realeased me because he couldnt understand why I was there in the first place. So now you go back and look at ALL THE FACTS and just like I have, with the exception my name doesnt have MD after it, you realize that ALL of my medical issues are not only direct complications of Dysautonomia, I have two other doctors scratching their heads because the issues I have in their field of expertise i.e. Gastroenterology and Urology doesnt comply with the normal medical situations they see in other patients. IBS (Irritable Bowel Syndrome) without any sign of the normal irritable bowel infection or irritation. (hint, Dysautonomia IBS is a nerve driven issue).  Kidney stones with high phospherous & calcuim composition that has no dietary connection. (Dysautonomia has the unique ability to dump certain high level compounds into the urine which causes abnormal stone formations that baffle Urologists that arent aware of the presense of other Dysautonomia symptoms or ailments). I had a lithrotripsy on my kidney to break up stones three days prior to seeing my Nuerologist and told him about the wierd compound of the stones, also telling him about the severe pain in my side that I was going to see a Gastroenterologist about and he could only offer that I had bad luck. Perhaps a doctor whos specialty is ANS, CNS should pick up on the fact that Dysautonomia is an ANS disorder and two of the MANY problems I had, I was having at the time of his visit. Thats my biggest issue with non city doctors. A big city doctor might have asked a few more questions or looked into my chart a bit closer.
I think I left everyone in enough suspense while I wandered off there, the diagnosis I matched up to almost 99.99 persent making it my biological father, is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Another linked facet of Dysautonomia that of all of them with the exception of Shy-Dragar Syndrome, is the most draining. I have a friend that suffers from this and shes absolutely miserable most of the time and now I can TOTALLY relate to her misery. Mine so far is only brought on my Monopoly for the most part the most severe of symptoms but at what point will I become worse? Each day is without a doubt a learning experience. I am probably the perfect person to have something like this because of my Aires determination to push the envelope to produce symptoms for my own research and developement and now my blog might someday help in the early detection for someone who has some odd symptoms that feels they shouldnt share with a doctor as of yet, or has shared and has hit stone walls as I have. Once I get into a full and complete understanding of all the dos and donts this syndrome have to offer, its time to get verbal and make people realize its ok to come forward and be persistant to get answers. There are only a million or so Dysautonomia patients in the USA but I am betting there are another 10 million that are getting the run around like I have over the past 11 years because not enough literature is available to get people to start to investigate the possibilities on their own of having it.
In closing I have gotten to the point that the unexplained isnt good enough anymore. Even when it comes to home based symptoms. If I can duplicate it, document and learn from it I am going to do so. Each time I go to the doctor now, they will have to convince me in an entirely different way because quite honestly I have become extremely knowledgable about this syndrome but also I have the edge, direct link to the test subject, myself. Thanks for reading.

The Fatigue Mystery

I had thought for sure I was beginning to gain a handle on this syndrome in figuring out the does, donts, where, when, hows and nevers but its always throwing the infamous curve balls. I have suffered insomnia for months now, dating back to November 2010 & have relied on a mere two or three hours a sleep a night with an almost black tie party extravaganza if I managed to get in a four hour siesta. I have had a few crash periods in between that lasted a day or upwards of five days where I had found it hard to stay awake and my mind & body would crash for 12+ hours, then I would return right back to the insomniac style of life all over again. I altered the way I take my meds in order to see if an earlier consumption would better assist but that isnt the cause. I just deal with the fact that I am only going to sleep when my mind is damn good and ready.
That being said, the miscommunication between mind and body becomes an issue. My body is screaming for sleep, each muscle crying, nerves sending pain signals through the roof to the point that I feel like several teams of angry knife bearing trolls are stabbing at my toes and in between my toes with the force of ten men. Its enough to seriously make you crazy sometimes when you just can't seem to convince your mind that the simplistic art of sleeping may just remedy the situation and allow the pain to disappear for another day.
Sadly, not lucky enough to get the two communicating on the same level, its like an episode of RHONJ sometimes internally in my body. I've got tables flipping, every other word has to be bleeped out and I find that my once fun filled personality is becoming engulfed in painful rage, inability to truly enjoy getting out of the house and taking in all the things that life has to offer. When you are lying in bed and you have to argue with yourself to get up knowing that first step is going to burn and feel like you stepped on a board of tacks, after awhile it does become hard to get up.
My drive to function, very simple, my children. My only true love in life is to see their angelic faces and hold them another day. Yes the pain is still there, sometimes so bad that when they arent looking at me I grit my teeth in pure agony, but when we make eye contact, its all smiles. My son turned 7 today and the first half of the day went well from a physical point of view but as the day progressed, I had become so drained, I wasnt sure I was going to be able to attend his birthday dinner. When it gets that bad, to the point you'd break the heart of your own child by not attending something that means so much to him, you then realize that your quality of life has deminished to its all time low.
What made todays fatigue so much worse though? In the past, it was unknown as to why I was so worn out until a visit with my EP Cardiologist determined I had bradycardia along with hypotension which was causing a very sluggish response from my body. Even though my mind was able to function on little sleep, my body wasnt able to ever recover because blood flow was never quite sufficient enough to endure the strain of the lack of sleep. I was slowing down one facet of my anatomy while the other was getting all charged up. So to remedy that, an increase of salt & caffiene has seemed to not only keep the blood pressure more regulated but also has raised my pulse rate to a more respectful level therefore keeping my bradycardia events at bay since April of 2011. A victory right? Wrong, still get fatigued, well with lack of sleep I could see that happening but today was way beyond the norm and I wasnt experiencing any presyncope events so it was pure fatigue. I was starting to lose the ability to freely move my arms without pain and my neck and shoulders were now effected along with the heaviest feeling I had ever had in my legs. It almost felt as if my gravity was tripled and I was now stuck to my chair. It was awful and the entire time my mind was racing to find the cause. I ran scenario after scenario through my brain trying to figure out what I might have done differently. Did I take the wrong meds? Did I take too many meds? What did I drink or eat? Did I have enough caffiene? Nothing abinormal about my day but I was physically tired beyond belief and 25 minutes from meeting up with others for my sons birthday dinner. I had to force myself to get up and do stuff, each little thing was an effort. I just could not believe I was failing so to speak and although my mind was fully capable of sending the messages to get my shit together, my body wasnt complying. With this syndrome also having the capability of snuffing me out at any given time, its not unusual to start to wonder if this is how its going to feel to head that path of fate "towards the light" so to speak. I dont exactly know what to think at this point but I do know that I have to, yes HAVE TO, get my son to his birthday dinner and do it in a fashion that no one in the world knows how badly I am doing from a physical standpoint.
I got the kids ready and as I lifted my daughter for the 11th time in a row, I knew this simple function was also taking its toll. My upper body was actually trembling under the stress of carrying her little 24lb body. I locked my arms together and had her hug my neck, I didnt want either of them to see me struggling to carry her. I was, without a doubt, far worse then I had ever been and without the catalyst of why, when and where, I had to do what I could to conceal, and make sure at the same time I was functioning in a safe manner for my children.
Again, I double checked pulse rate, all well, evaluated possibility of presyncope, nothing to present any evidence of oncoming episode, just pure muscle fatigue. I am aware that along in the mix of all the wonderful ailments that Dysautonomia has to offer, you can also order CFS (Chronic Fatigue Syndrome) if you act now, for only $19.95, once you have it, NO RETURNS! So that thought went through my mind that my ever changing circumstances at home were manifesting the other charateristics of the syndrome and bringing about all the possibilities that were available to take my body over. I was ecstatic of course, who wouldnt want something else to focus on healthwise, shit, lets bring on some eyebrow cancer next. I'd never get anything thats curable or normal, it has to be exotic and only contractable if I had traveled to Madagascar on the fifth Monday of the seventh month of the year while riding a unicycle backwards in a yellow speedo playing a 1921 right handed banjo and also playing a harmonica to only Guns N Roses songs. (still researching if this is how I contracted ANS in the first place, pretty sure I had a blue speedo on)
I had gotten to the birthday dinner, managed to get home but still I ache to the point of wanting to cry like a girl scout who didnt sell 6,000 boxes of cookies to get her "cookie selling" badge. Then it occurs to me that I decided to bypass an article I had come upon after many, many, many hours of research online for the Dysautonomia. The article had focused on one of the conditions I had already which was the unexplained loss of balance and/or visual disturbances. I have had this issue happen, reoccur etc... since March 2010 so its old news but the other part of the article, the one I should have read, seemed stupid and unrealated so I just ignored but I recall the subject matter. It had detailed severe fatigue symptoms brought on by simplistic brain function such as mathamatical stimulation. I thought it was absurd so I just moved on. Now I kick myself in the ass that I didnt read it because as fate would have it, I was absolutely fine, (when I say fine, meaning my normal aray of pain, annoyances and daily glitches I have learned to live with) but I began to get progressively worse, started to ache, become as I said fatigued beyond belief and what was I doing as all this began to unfold? If you guessed counting all the money I won from the lottery you were close, just missed it by a tiny bit. What I was doing exactly was playing Monopoly with my son. As I had to do more and more math in my head I found it harder and harder to calculate simple math problems in my head and started to get confused to the point I would have to start over again & say everything outloud. (the beginning of the game I was able to do it in my head without saying anything outloud) By this time, as I repeated it outloud, the simplicity of the math was so that my now 7 year old son would answer the problem for me. The longer we played, the worse I had gotten, I was fine when we first sat down but by the time I had gotten to the end of the game, I was completely wrecked. Something about Dysautonomia and its counterparts has an adverse effect on the part of the brain responsible for use in simple math, can you freaking believe that? The result, fatigue. It was in a section that was one of those "not common for everyone" side effects of the syndrome so I need to go back through all the history now and find that article. It was the one and only time I saw it. I can not believe that by solving math problems, I actually caused my body to shut down in a way that its almost as if I had lifted a fleet of cars by hand. I am intrigued but also very alarmed. Whats next, if I sneeze I begin to do pattycake with my shadow on the wall? I mean I realize its a complex syndrome, go it, but complex and F'ing fully beyond ridiculously outrageous are two different things. I have been terrified to scratch my balls as most guys will do, might cause a tail to grow or some other wacky crap.
In closing its best to suggest that even if the absurd seems well beyond whats possible, its worth looking into, you just never know. I have no idea how I even contracted the syndrome in the first place so that mystery unsolved, I shouldnt look at anything as being too messed up or crazy to read into. Reading is knowledge, knowledge is power, power is control and control is not pissing your pants, very simple concept. Thanks for reading.

When Reality Becomes Reality

All my life, from early childhood until present day I have always been known to be more than 85% passive, 10% creative thinker mostly from the hip inclusive of quick whit, 3% anger related, usually alot of swearing which ends up entertaining people more so than anything because most NJ people have the natural talent of running a two paragraph rant of swears without using the same combination twice. Then I'd say 1% explosive anger, the kind that scares people, you lock doors and wait for it to blow over. I had been known in my younger years to damage or throw objects in a rage that normally I would need assistance to lift. Its a black out anger and once its over, all is calm, right back to whatever was going on prior. Everyone else in the room is pale white with fear, but I would just return to whatever it was I happened to be doing just before the outrage occurred. Lastly, 1% emotion, I was very tight on that and never showed it anywhere at anytime. It seemed unexcepted in our family for the men so it was sucked up and dealt with, most likely the reason for the outrageous outbursts that happened at random, the mind just exploded. This was how I lived my life for the most part for as long as I can remember. All that changed in March 2010, reasons I would later find out about but this was the turning point for the mental assault that Dysautonomia was going to take on me from this point on.
I had two car accidents which had injured the same area for the most part. The first accident in 2007, the second 2009. Due to the nature of the 2007 accident, a more laid back approach was done to improve the effected areas due to my phobia of needles. Physical therapy & Chiropractic measures were in place of surgical intervention, pain killers or epidural injections. It was working, really slow, but working to some extent. I was slowly starting to regain some of the mobility I had prior and I was returning to normal activities.
Then the 2009 accident happens. I leave on a back board, not because the accident was so severe with major damage but because my back spasms were so bad I couldnt lift my left leg to get out of vehicle. When EMS arrived I requested assistance to get out of vehicle to walk it off due to previous injury & the fire fighter first to respond said to me that no such help was available. If I couldnt get out under my own power, they were lifting me out. So option B happened and these guys fought to get me out of this frigging 88 Jeep Cherokee company vehicle I was in and refused any help whatsoever that I could offer, just made me lie motionless. I had substantial damage to the lower back this time, herniated the disc & it was pinching a nerve which had caused both of my shins to tingle and feel cold all the time. At this point, I had no choice but to go the route of injections to speed the recovery.
Well the injections & the medications prescribed to help "heal" ended up causing a TE (Toxic Encephalopathy) which caused me to "blank out" completely on my couch while holding my infant daughter. My wife called EMS and I was brought to hospital where I woke up, (in my mind only, I had conversations with people in between but have no memory of it) the next day from what the nurse told me had been my arrival day. Wierdest part was I had lost most of the day prior to the day I had arrived as well & after going through my Blackberry, realized I had missed my cousins wedding, the birth of my daughter, Michael Jackson had died etc... In a mere 24 hour period, I had lost weeks, segments of years, three minutes ago etc... But everything else was different as well. A frigging puppy on TV would make me cry, my OCD tendencies as per my wife had gotten so tuned in that she was ready to call in for help. Sensitivity to light was amplified, confusion to patterns, i.e. diagnol tile patterens I suddenly couldnt walk on them. I was calm, sensitive, emotional & oddly enough, the missing emotion was anger.
Now I can only question what others brought to my attention but I can verify the emotional issue. There are times where the reality of my reality will hit home and the fact that I have something as constricting on life as a terminal illness, it will hit me like a 90mph fast ball to the back of the head. I could be watching the worlds funniest movie and suddenly be taken over by such a thought, be full blown emotional and then right back to normal within a three minute period. Probably going to be the hardest, wierdest, most overwhelming part of this whole syndrome to overcome. Its never a depression, like take me now feeling, its more an overwhelming pool of emotion of sadness for those people I will leave behind if this defeats me and then my determination kicks in and off I go back on track to "normal".
Well, I have never had any type of issues with the kids around, I refuse to show my hand to them. Their mother cries all the frigging time as it is and has made our son an emotional wreck and basically has parentalized him to feel he needs to take care of her, hes 6 years old, no kid should have to live with that much stress at his age. So I have always gone the extra mile to make sure I am always BEYOND excited and charged even though I am beat up and falling apart inside with every fiber of my body screaming "UNCLE". I dont want my son feeling he has to take care of both his parents.
So we're sitting on the couch watching TV together, the kids and I like always. Nothing different, same reruns of ICarly which make me want to vomit daily but when you love your kids you live with what you are dealt with to spend time with them. At one point during a commercial break, my youngest, the 21 month old turned and looked at me, big hazel eyes, red hair, adorable face, binky in place and she slowly reached up and gently rubbed my cheek with her little hand with this facial expression that almost said "dont worry about us, we'll be fine" and it was that reality and image right there and then that was too much to keep from emotional expression. I had an endless tear situation going on for almost 5 minutes but had to compose myself due to my son being on the other side of me without any knowledge of the fact his dad was in such an emotional distress. My daughter just stared at me as my tears ran down my face and she never stopped rubbing my cheek, it was the most heart breaking moment of my life to think that the reality of my situation is a potential of dying young and never seeing this little angel grow up. I was devastated and I just pulled her in as close as I could knowing that each moment I hug & kiss either of them is could be the last so I have to cherish each and every single time with all of my heart.
My oldest daughter choses not to speak to me, shes not one that enjoys hearing the truth, a lot of people prefer to hear how great things are or how great they are but can't handle someone that tells them like it is. I made every attempt in the past 3 years to make things right with her but with all the negativitiy her mom & grandmother project trying to hide a twisted past, all they've truly done is keep a daughter from knowing her dad. Its her loss, I have gotten past the feeling that as a parent I'm not supposed to ever give up on a child but the "vehicle" that houses that child is 18 now and believes they are an adult so I have to pretend she knows whats best for her now. I think she's going to find out too late that shes made the wrong decision, once I am gone, there isnt any such thing as ReFriending a father that has passed away. I have left the truth with several trusted friends that all have a way of contacting her so its not like I couldnt have come in like father of the year tearing up her mom & her grandmother, I have more class than that. I do however have everything in her mothers words exactly what had happened so it puts to rest all the BS they fed to my daughter the years prior. When you live in a glass house always make sure your neighbor isnt a slingshot salesman, and especially make sure you dont confirm everything you denied in writing. Another example of reality becomes reality.
In closing its important to realize that the mind does drift drastically with Dysautonomia and when fueled by prescriptions that most times the effects are reversed it can seriously play with you in ways that you begin to question your own mental status. I have a superior survival thought process so it seems that my defense against the syndrome in the mental attacks its waged on me have been beaten by me ability to self diagnose the mental impulse and spin it to a positive, task driven device instead thus defeating its negative grip. My only complication to this was when I was being injected with Testoterone, that unfortunately was a 24/7 thought process of ways of proceeding through with suicide, planning, plotting etc... I was almost Baker acted when I told my dr, the one who presribed the injections originally, she actually had me sign a waiver and immediately discontinue use. Not sure what the issue was with it, but what a mix up of communication there. So make sure you talk openly with your dr about ANY medication side effect no matter what it is when you suspect you might be sufferening from an ANS disorder. Any type of chemical imbalance can prove fatal. Thanks for reading.

Tilt Table Test

Today was the infamous Tilt Table Test which is the first step in the long road of twists, turns and road blocks for Dysautonomia patients. Each and every version of the syndrome offers the Tilt test as one of the first test to proceed with because it seems that syncope or presyncope is pretty common regardless of which ever form ANS disorder you actually have. So its a step in the right direction, hopefully one that will answer some much needed information leading to my future with this wonderful syndrome.
I had arrived early as usual and the standard prep procedures were enforced. Fasting, NPO for eight hours prior to procedure, normal and very routine for someone of my very veteran status in the hospital procedure world. I met with the procedure nurse & although I should have been flattered she remembered me from the last visit I had to the Heart Cath floor of the hospital I couldnt help but realize that here I am 44 years old and this was my fourth visit to this identical floor since 2001. She remembered me from my 2010 surgical implant of the loop recorder so I guess you could say we were like old friends.
She updated me on the expected procedure and how intensely boring it was but I had to remain unstimulated. Yep, no Blackberry, no TV, no radio, just motionless standing while strapped to a bed. Of course I can't be that normal patient that just goes with the flow I have to ask the stupid questions like "if a fire breaks out, you unbelt me before running correct"? That question didnt seem to bother her enough so the second question of "if the table malfunctions and the belts fail, should I become lodged in the sheetrock face first, does my medical insurance cover that or is that on you?" If I am going to be in a room for 45 motionless minutes with anyone, I am shooting for lightening the mood regardless. She was like Stonehenge, didnt even crack a smile.
So we got all cranked up, IV in, BP cuff on and before long, shot to upright position. I didnt realize how difficult it was to read upside down, but I was trying desperately to read her notes as he entered them, the whole time she kept asking me how I was doing. About 35 minutes in, I was burning up, I mean like frigging on fire and I remember telling her how insanely cold the room was and how the gown didnt cover enough real estate to guarantee I wouldnt get frostbite. So as I complained about excessive heat, she began to watch me more closely. Asked more questions about how I felt, why I was getting quiet etc... All I knew it was F'ing hot and I needed to cool down. Another disadvantage of Dysautonomia, it controls your core temperture. It can cook you or freeze you whenever it wants. I could remember running temps of 96.1 and swearing the temp gauge was defective then hours later be at 102.4. Stuff like that never occured to me as being anything less than just a viral hiccup but now I realize how uncontrolled my body was with dealing with issues of stress or attack to the immune system.
I made it through the first half of the test and now part two was done with Nitrolingual spray which I have had to use MANY times in the past. Hell, I have filled at least two prescriptions of the spray and three of the pills in the past years so I was like whats this for? She didnt go into detail just said it was a diagnostic tool for the test and I stated that I used to use it frequently & other than nasty headache, it was used to take away chest pain, angina. So she shot me under the tongue and we just waited. She asked me again about the heat issue and I noticed I was getting even hotter. I was explaining it to her, as the second minute passed. I wasnt watching the clock, the BP cuff was set on 60 second intervals so you knew each passing moment as your arm got the crap squeezed out of it. As minute three was coming on & just upon us, the white lights, slurring and bye bye broadway started. She jumped on that down pedal, like a four year old on a bowl of Fruit Loops. Just kept saying to me "stay with me" I was there but not, the fat lady was singing her final note but as the bed hit base, I began to regain my alertness. She was scrambling to gather all the data and quickly unbelted me. My inner dialog was still on humor, I wanted to say "you headed for the crash cart?" but the words never left my lips I was too busy clicking my heals together and heading back to Kansas.
Within five minutes, she sat me up and evaluated that I was within acceptable BP & heart function status that I could be released. I then noticed the code blue button on the wall and joked about how we forgot to designate who was going to hit it in an emergency situation. I finally broke her, laughter at last. She quickly composed herself and said to make an immediate followup with my dr and she was faxing the results to him STAT.
Now, I'm not one that over reacts or worries so to me thats just another knotch in the belt of "whatelse is new" for me. I am expecting to hear, "POTS, NCS," or something along those lines so to me urgency isnt an issue. I already know what they are and I already know what to expect, and I am already on the meds to counteract the effects so now what? But that leaves open the actual Cardiac issue. A valve issue, pulmonary issue etc... So its again, damned if you do, damned if you dont. Optimist as always, I am going NCS, the lesser of the evils. Somewhat benign, underlying, stress induced, Nuerocardiogenic Syncope. An ANS failure brought on by..........go ahead guess..............Dysautonomia. If its POTS, well it is what it is right? Either way its still causing my heart to slow down, drop pressure and make me pass out. This is bad.
In closing, I have to point out that I have a genuine fear of hospitals and doctors. I am not fond of them, hate going to them. So the fact that I have had EXTENSIVE testing, years and years of probing, medication lists that would choke Courtney Love, I do all these things because I cant live with the unknown. There is always a reason for something to happen, an action has to have a basis. So allow my experiences to be your bible & shortcut to avoid the unnecessary. I have been that pin cushion, that lab rat. In the end, I will have proven to EVERYONE that no person could ever dream something like this up in their head and subject themselves to such evasive procedures, thus placing themselves in harms way, just merely to keep a "lie" going, this is the real deal and dont EVER let anyone tell you its in your head when you know yourself you are fighting your own body daily for the answers. Thanks for reading.