I know I have said numerous times in the past as well as a target post on the effects of prescribed medications and how they will work differently on persons who have ANS disorders. This certainly is, based on my research, will be the largest issue that I will contend with for the entire ride I have dealing with this syndrome. The average doctor doesnt have time to sit down and really go over each and every medication over a patients lifetime to see how it worked, side effects, interactions with other drugs etc... Its up to each one of us to keep a mental journal so when a drug is offered we can offer input as to whether its a good thing or a bad thing to have it prescribed. Now take into consideration your mental capacity for recall is variable. Doesnt that just make things a whole bunch of fun and a barrel of monkeys? Thats the bonus part of this syndrome, the selective recall, (not to be confused with "SIMRS (Spouse Initiated Mental Recall Syndome)" thats entirely different and usually effects males that live with women that could talk the ear off an iron jack ass, but have the ability to nag like a team of thorobreds.
This is a bit different. Its kinda like getting the same list handed to you everyday of things to do and you review it, by the end of day you realize you forgot #7 so you become frustrated. So all you think about that night is not forgetting #7 and you show up the next day ready for that list. You repeat the same exact routine and this time you hit the mark, you complete #7 however, you bypassed #3. Now you followed the identical path you did the day before, even got out of the car and walked to the area where #3 was to be completed. When someone asks you to repeat your exact steps you recall the day before verbatim for #3 but can only remember heading towards the area of #3 on day two. Lets pretend a hidden camera was watching your every move. The reason you never made it to #3 is because right next door to that location was a Walmart and you remembered you were out of shampoo & Twinkies at home. That simple but extremely distracting thought came just as you should have focused for entry into #3 location so you walked right by and headed to Walmart. Finished at Walmart but not exactly as planned. You leave there with shampoo & potatoe chips because you knew there was a specific food item at home you needed but it slipped your mind as to which one it was when you got in there. You see how frustrating my day can be at times? I actually have a pill reminder so that I can keep track of my 9 prescriptions for evening and 4 morning doses. Sad part is I cant remember to fill it up.
So for people with ANS that suffer the short term or have the issues with familiarization recall like I do, its important to have journals of the meds on a cell phone or something you are sure to travel with daily to the doctors office. Because my doctor knows me so well and knows my OCD is so off the charts with following proper medication dosage, her only concerns are that I remember to take the pills. Which takes me back to the overall problem with taking the pills.
When you have pills designed to offer a control of a medical issue and your body is capable of reversing that property whats the answer for properly medicating? I know from experience I can go from one medical condition to another in a day and maintain that for unspecified time. So I couldnt imagine being my doctor, it would be a nightmare.
I took the time tonight to look up drug interactions with what I am currently on and when you get the red box marked MAJOR on three of your drugs used in conjunction, you tend to read up a bit on them. Well the good news is two of the interactions may cause ANS, wouldnt that be horrible? I wonder if by combining the drugs if I can reverse the propers of the interaction and cause something simple like a hang nail. Its worth a shot.
The other two drugs that mingle badly together, well thats a different story. I have been experiencing side effects that are a bit out of the ordinary and I make notes of them on my phone. I had also shared them with a close friend of mine because a few of the symptoms were a bit off the wall for me so I just felt the need to share. Well right there in the interactions its like text book reactions as if I wrote it. I had to kind of giggle a bit thinking to myself that here is a new drug designed to "help" me and in the end may end up doing more harm than good. But as you read on the pros and cons are weighed evenly so its a toss up. I feel better on the new drug then I had before, not by any means cured or ready to sign up for the olympics but I can endure a bit more daily now with the pills help. However, the side effects are starting to interfere and as my doctor has said, shes waiting for another three weaks for the drug to peak for the beneficial part so that means I have another three weaks of it potentially gaining strength in the side effects area as well. This drug interaction was missing only the skull and cross bones. So I am a gambling man, and right now I am currently dancing with the devil having this syndrome as it is. In its progressive state, I am a here today, gone tomorrow candidate so giving my doctor a chance to see if she can try and reverse some of the damage seems like a valid futuristic move for me. When I look at the severe drug interaction its also a here today, gone tomorrow scenario. So either way, I am either betting it all on black or on red. You really can't have this kind of fun playing Wii.
I have to joke around about all of this, no way in the world I am letting this crap bring me down. I sat there and watched the YouTube video for John Rich's release of "For the Kids" and with tears in my eyes I realized how precious life truly is. I have my goal set, educate everyone I can about what I have and what I go through so early detection can save someone from traveling the same path I have traveled. Secondly, St. Judes Childrens Hospital, I intend to be a Partner in Hope as well as an advocate for bringing more peoples attention to the wonders that hospital do for those children and familes of the children. Third, Project LadyBug, a close to home charity I had just learned about. Once I get back on my feet financially I will make my efforts to join forces there as well, also devoted to helping the children. Obviously above all else, I have my own family to spend time with and cherish as the days go by. Each birthday the children have that I attend will be another knotch in my belt of survival. I like beating the odds.
In closing I'd like to point out that even when things seem to be unevenly stacked against you, theres always some ray of hope. A small glimmer of salvation that keeps you positive that you'll defy all odds and prove all medical evidence wrong and prevail to live life to the fullest. I'd love to look back on all of this 40 years from now and laugh. Question is, at 84 will I remember what I am laughing about? I am having trouble remember now so I guess I'll just be happy with still breathing at 84, gumming a banana in a rocking chair somewhere. Thanks for reading.
Friday, July 29, 2011
Wednesday, July 27, 2011
Reverse Properties of Medications
For the most part, each person I know and I am sure applies to any and all people, if you have a particular ache, pain, burning sensation, or other annoying body signal for an abnormality, we'd like to be able to reach for a pill (s) either over the counter or prescribed and have that pill bring relief within a certain time period. Most times this is achieved within thirty minutes or so and the lasting effects upwards of two to three hours depending on the medication. Now picture each time you go for that medication it changes its healing ability or reverses the property or purpose it was set out to do. Pretty frustrating right? Well thats the hardest reality to deal with in regards to the Dysautonomia so far that to me exceeds some of the other annoying complications its caused my body.
I dont often get headaches, its not something that happens to me so when one happens its usually brutal and relentless so I want to grab something thats going to cure the issue ASAP. What I couldnt understand, until now. is I would take Tylenol for the headache and within a short time, it was gone. So common sense would dictate, Tylenol works on headaches, mental note. So of course when I get another headache many moons down the road, I reach for the Tylenol and I am ready for the relief. However this time that relief doesnt come. So now I think, is my neck out of alignment? So I do some adjustments to myself, (no I did not just say that Dr Moon) apparently taboo to adjust your own neck. Still this doesnt cure my issue. I head for caffiene, I am addicted to that so if I dont reach my minimum 24 ounce caffiene loaded Diet Dew, its a bad day in FL. So even though I had remembered to drink it, I go for another 24 ounce. Still, the headache is relentless. Hours pass and I head for the Motrin, 30 minutes later, headache gone, mental note, Motrin now works better than Tylenol. Well you can see the vicious cycle starting here. Turns out I never did find the combination that worked. Its random, it could be the Tylenol, Excedrin, Motrin, that crushed up crap in a package that tastes like bad chaulk whichever, whenever, whatever, nothing really worked twice in a row.
This also proves true with all of my other meds. One day I have hypertension, high blood pressure, the next day hypotension, low blood pressure. Now I am on hypertension medication so how could I have hypertension? Well thats easy, I am on amphetamines, they not only raise blood pressure but they also cause excessive heart rate. Or do they? My heart rate is too low and instead of having tachycardia, I have bradycardia. Now that actually can change by whether or not I am standing still or lying down, the whole reason I am sure that they will be testing me to see if I am a POTS (Postural Orthostatic Tachycardia Syndrome) candidate or not. Damned if you do, damned if you dont.
I am on a new medication for the Fibromyalgia symptoms I exhibit and the medication is called Savella. Oddly enough, one of the known side effects of the drug is tremors. Well, my Dysautonomia symptom prior to starting the medication which the sole purpose was to bring relief to my excruciating leg pain, I had hand tremors that I've had for quite some time. This is a manifested Parkinsons symptom that falls under the Dysautonomia as does the Fibromyalgia and Chronic Fatigue Syndrome symptoms. Its a complex combination of mimicing symptoms that cause so many different side diagnosis, its no wonder that people that finally get the full diagnosis are completely worn out from all the run around and near misses. Where I was headed with this was the fact that my hand tremors became controlled on Savella, the exact opposite property that most people experience. I had insomnia prior to taking Savella so it hasnt increased or decreased that effect as of yet so we'll see where that goes.
My amphetamines are working the opposite as well. Instead of making me high strung, alert, full mind activity, with raised blood pressure and heart rate, its actually doing the opposite. There was actually a period of time where I was also falling asleep everywhere I sat down which totally baffled the doctor. Well scratch your head no more doc, you can blame the ANS now for taking the medical properties of all my drugs and shifting them around to do whatever it feels my body wants to do with it. Very odd scenario indeed. Nothing worse then going to the hospital for a procedure that hypes you up so bad that they cant calm you down with the normal limits of the drug used on most patients so they hit you with six times the recommended dosage, still with limited effects. Once the procedure is completed, then the stress level drops and the drugs take on the necessary actions AFTER the procedure is done so I sleep for a day. I experienced most of this type of resistance with Versed, Dilaudid, Morphine and Valuim. I was given 20 mg of Valuim, along with muscle relaxers, Zanaflex 8mg, prior to an epidurel injection that they couldnt sedate me for and the doctor thought I had forgotten to take the medication. As I told him, had he written me for 40 or 80 mg of Valuim I would have taken all of it, I was so hyped up with panic over that injection that I was bouncing off the walls. The odd part, my body internally was not acting to what my external reactions and mind were indicating. As I laid there having my injections, almost having the nurse pummel my ass to the table, she kept trying to talk to me in that soothing voice like all was well. I had to remind her I was the one with the needle sticking out of my body, expletive expletive. The injections only take about a minute after he does the local injection for numbing so its a relatively quick procedure and you are done. The nurse then advised me to remain still and whatever I did, DO NOT GET UP.
Now to me, I felt nothing but total stress, anxiousness, feeling as if I wanted to climb the walls so I was feeling that sprinter feeling, getting signals that my body was in high gear ready to go. SOOO not the case. As I turned my head to look at the telemetry to see how far off the charts I had gotten things I was totally baffled by what I saw. My pulse was no higher than the low 60s and my blood pressure, lol, 86/50 I was borderline passout patient. My body was trying to shut down but forgot to send the email to my mind that was thinking I was still out running a pride of hungry lions. That always stuck in my head as the oddest situation or experience call it what you will. The nurse just called it shock, but now knowing what I know, the shot was so close to the nerve branch that essentially as a protection mechanism, my brain was trying to target a reboot so to speak. The only problem was the adrenaline from my stress of the needles prevented that from being a success so I foiled the plan causing my other bodily functions to stress out. If it couldnt shut my mind down, it was going to stall it out so to speak. The nurse not allowing me to stand up prevented that so again, plan foiled. Last but not least, the overall edge the body had over the Depomydrol was to reverse its healing capabilities. It actually made my pain levels increase and started to effect my sciatica more pronounced and even caused urine retention.
I have taken alot of "experimental" drugs that my Neurologist has tried to use in an effort to refire my brain for recall or at least maintain short term memory function. In doing so I have had some immediate reactions to certain drugs, with in twenty four hours and I have even had symptoms that were not something the doctor was aware of which always lead to the same answers, you werent on the drug long enough for that to have happened or it wasnt that drug that caused that issue. Well, sorry doc, I might not have gotten an MD added to my name but I can go on the internet and read. I can also research and make intelligent confirmation of your statements to prove that you just didnt want to go that extra mile to listen. Thats the ultimate insult for me, when I say to a doctor that this is happening, and they say "its impossible, that drug cant cause that", I really dont know what keeps me from ramming their stethoscopes clear up to their Diverticulum via their Rectum.
So the next time you reach for that cough medicine, cold medicine, headache reliever, arthritus reliever or one of your prescribed meds and you had the reverse effects of that drug happen to you, ask yourself how many other odd medical issues or unexplained medical failures have you had that might lead you to the wonderful world of ANS. Its completely changed everything about how I do everything in my life now and how I handle new medications, new procedures and upcoming repeat procedures. Even the anesthesia becomes an issue for me now. Before it was a necessary function of any procedure that required twilight or a full sleep mode, now I have to fully discuss everything with all doctors present to make sure I am going to wake up again. They could essentially put me to sleep for good without the proper information up front. Before I was lucky as were they, now I am informed so they need to be prepared as well.
In closing its safe to say that many complications will arise with any disease/syndrome etc... Its how you overcome the obsticle that sets you apart from everyone else. I have a positive attitude, I realize the severity of my syndrome, and I even joke around about the fact it could kill me any day, any time it truly wants. Taking it way too serious just causes more stress and its a syndrome that feeds completely off stress. So what do I do? The opposite that the syndrome wants me too. Thats right Dysautonomia, screw around with my medications and my involuntary body functions and I screw around with your ability to be taken seriously. Touche my friend, touche. Thank you for reading.
I dont often get headaches, its not something that happens to me so when one happens its usually brutal and relentless so I want to grab something thats going to cure the issue ASAP. What I couldnt understand, until now. is I would take Tylenol for the headache and within a short time, it was gone. So common sense would dictate, Tylenol works on headaches, mental note. So of course when I get another headache many moons down the road, I reach for the Tylenol and I am ready for the relief. However this time that relief doesnt come. So now I think, is my neck out of alignment? So I do some adjustments to myself, (no I did not just say that Dr Moon) apparently taboo to adjust your own neck. Still this doesnt cure my issue. I head for caffiene, I am addicted to that so if I dont reach my minimum 24 ounce caffiene loaded Diet Dew, its a bad day in FL. So even though I had remembered to drink it, I go for another 24 ounce. Still, the headache is relentless. Hours pass and I head for the Motrin, 30 minutes later, headache gone, mental note, Motrin now works better than Tylenol. Well you can see the vicious cycle starting here. Turns out I never did find the combination that worked. Its random, it could be the Tylenol, Excedrin, Motrin, that crushed up crap in a package that tastes like bad chaulk whichever, whenever, whatever, nothing really worked twice in a row.
This also proves true with all of my other meds. One day I have hypertension, high blood pressure, the next day hypotension, low blood pressure. Now I am on hypertension medication so how could I have hypertension? Well thats easy, I am on amphetamines, they not only raise blood pressure but they also cause excessive heart rate. Or do they? My heart rate is too low and instead of having tachycardia, I have bradycardia. Now that actually can change by whether or not I am standing still or lying down, the whole reason I am sure that they will be testing me to see if I am a POTS (Postural Orthostatic Tachycardia Syndrome) candidate or not. Damned if you do, damned if you dont.
I am on a new medication for the Fibromyalgia symptoms I exhibit and the medication is called Savella. Oddly enough, one of the known side effects of the drug is tremors. Well, my Dysautonomia symptom prior to starting the medication which the sole purpose was to bring relief to my excruciating leg pain, I had hand tremors that I've had for quite some time. This is a manifested Parkinsons symptom that falls under the Dysautonomia as does the Fibromyalgia and Chronic Fatigue Syndrome symptoms. Its a complex combination of mimicing symptoms that cause so many different side diagnosis, its no wonder that people that finally get the full diagnosis are completely worn out from all the run around and near misses. Where I was headed with this was the fact that my hand tremors became controlled on Savella, the exact opposite property that most people experience. I had insomnia prior to taking Savella so it hasnt increased or decreased that effect as of yet so we'll see where that goes.
My amphetamines are working the opposite as well. Instead of making me high strung, alert, full mind activity, with raised blood pressure and heart rate, its actually doing the opposite. There was actually a period of time where I was also falling asleep everywhere I sat down which totally baffled the doctor. Well scratch your head no more doc, you can blame the ANS now for taking the medical properties of all my drugs and shifting them around to do whatever it feels my body wants to do with it. Very odd scenario indeed. Nothing worse then going to the hospital for a procedure that hypes you up so bad that they cant calm you down with the normal limits of the drug used on most patients so they hit you with six times the recommended dosage, still with limited effects. Once the procedure is completed, then the stress level drops and the drugs take on the necessary actions AFTER the procedure is done so I sleep for a day. I experienced most of this type of resistance with Versed, Dilaudid, Morphine and Valuim. I was given 20 mg of Valuim, along with muscle relaxers, Zanaflex 8mg, prior to an epidurel injection that they couldnt sedate me for and the doctor thought I had forgotten to take the medication. As I told him, had he written me for 40 or 80 mg of Valuim I would have taken all of it, I was so hyped up with panic over that injection that I was bouncing off the walls. The odd part, my body internally was not acting to what my external reactions and mind were indicating. As I laid there having my injections, almost having the nurse pummel my ass to the table, she kept trying to talk to me in that soothing voice like all was well. I had to remind her I was the one with the needle sticking out of my body, expletive expletive. The injections only take about a minute after he does the local injection for numbing so its a relatively quick procedure and you are done. The nurse then advised me to remain still and whatever I did, DO NOT GET UP.
Now to me, I felt nothing but total stress, anxiousness, feeling as if I wanted to climb the walls so I was feeling that sprinter feeling, getting signals that my body was in high gear ready to go. SOOO not the case. As I turned my head to look at the telemetry to see how far off the charts I had gotten things I was totally baffled by what I saw. My pulse was no higher than the low 60s and my blood pressure, lol, 86/50 I was borderline passout patient. My body was trying to shut down but forgot to send the email to my mind that was thinking I was still out running a pride of hungry lions. That always stuck in my head as the oddest situation or experience call it what you will. The nurse just called it shock, but now knowing what I know, the shot was so close to the nerve branch that essentially as a protection mechanism, my brain was trying to target a reboot so to speak. The only problem was the adrenaline from my stress of the needles prevented that from being a success so I foiled the plan causing my other bodily functions to stress out. If it couldnt shut my mind down, it was going to stall it out so to speak. The nurse not allowing me to stand up prevented that so again, plan foiled. Last but not least, the overall edge the body had over the Depomydrol was to reverse its healing capabilities. It actually made my pain levels increase and started to effect my sciatica more pronounced and even caused urine retention.
I have taken alot of "experimental" drugs that my Neurologist has tried to use in an effort to refire my brain for recall or at least maintain short term memory function. In doing so I have had some immediate reactions to certain drugs, with in twenty four hours and I have even had symptoms that were not something the doctor was aware of which always lead to the same answers, you werent on the drug long enough for that to have happened or it wasnt that drug that caused that issue. Well, sorry doc, I might not have gotten an MD added to my name but I can go on the internet and read. I can also research and make intelligent confirmation of your statements to prove that you just didnt want to go that extra mile to listen. Thats the ultimate insult for me, when I say to a doctor that this is happening, and they say "its impossible, that drug cant cause that", I really dont know what keeps me from ramming their stethoscopes clear up to their Diverticulum via their Rectum.
So the next time you reach for that cough medicine, cold medicine, headache reliever, arthritus reliever or one of your prescribed meds and you had the reverse effects of that drug happen to you, ask yourself how many other odd medical issues or unexplained medical failures have you had that might lead you to the wonderful world of ANS. Its completely changed everything about how I do everything in my life now and how I handle new medications, new procedures and upcoming repeat procedures. Even the anesthesia becomes an issue for me now. Before it was a necessary function of any procedure that required twilight or a full sleep mode, now I have to fully discuss everything with all doctors present to make sure I am going to wake up again. They could essentially put me to sleep for good without the proper information up front. Before I was lucky as were they, now I am informed so they need to be prepared as well.
In closing its safe to say that many complications will arise with any disease/syndrome etc... Its how you overcome the obsticle that sets you apart from everyone else. I have a positive attitude, I realize the severity of my syndrome, and I even joke around about the fact it could kill me any day, any time it truly wants. Taking it way too serious just causes more stress and its a syndrome that feeds completely off stress. So what do I do? The opposite that the syndrome wants me too. Thats right Dysautonomia, screw around with my medications and my involuntary body functions and I screw around with your ability to be taken seriously. Touche my friend, touche. Thank you for reading.
Monday, July 25, 2011
The Emotion Switch
Most people deal with emotional issues in their own way, whether its right or wrong, we all have our own set boundaries of dealing with issues of: anger, depression, fear, pain, loss, happiness etc... If it works for you, great then I say go with it. I can say that all my life I have had such unusual reactions to situations that in some cases had me talking to myself later wondering if I had lost my marbles. My severe outbursts of rage over something small and otherwise considered to be nothing big, yet you would swear I had lost something so valuable that my actions of rage could be justified but later you learn that someone had moved my pen to a different location. What makes this sometimes funny to me is the fact I am not exaggarating the simplistic catalyst in my anger outburst, the oddity is the fact that you could run over something of extreme value of mine in the same day after seeing that explosion and figure you should prepare to leave the country but when I am told of the situation, I am as calm as can be. Thats the missing link to this puzzle, the control mechanism that allows me to be calm for one situation and not the other.
I was a happy child, very passive and for the most part the ultimate mediator. I could calm a situation between two or more people so they could focus on the important things at hand. I dont recall any serious anger issues as a small child, or issues of rage over simplistic situations I pretty much followed the rules and tried to make sure I made everyone happy. I had one thing that I recall I was famous for when I didnt get my way, and now seeing my son do the identical thing without any knowledge of my childhood makes me laugh internally but also expresses some concern that hes way too much like me, will he also inheirit the health issues as well? I pray daily he does not, hes too precious in my life to even consider the possibility something could be wrong with any of my kids. Moving on......
As I was saying, my infamous attempts to level the playing field with my adult family members to get my own way consisted of bringing suffering to myself. Taking a prized childhood possession to them for surrender if I didnt get my demands met. My mom and my grandparents I truly believe formulated the "no negotitation with terrorists" format this country has as a result of dealing with me as a child. They never gave in to me and would take my items that I declared meant nothing to me anymore without that trip to Dairy Queen or the ability to ride my bike in the rain, and they would hold their ground. Every kid uses some form of leverage, mine was always a disadvantage knowing that I really didnt want to lose the item but knowing that meant so much to me how could they not say yes to my demands? Took me a good three years to grasp the concept that I wasnt winning with them. Slow learner or defiant, strong willed, determined little boy who just wouldnt take no for an answer? I'll allow you to draw your own conclusion.
I bring this up only to point out the disconnect of the mental status of Dysautonomia. It never occured to me back then because of my age, that I had so many mental disconnects from things that meant alot to me. I could walk away from sentimental items of choice but others I couldnt live without. If I had three best friends and they all broke their left legs identically, each one would get a totally different response from me whether it be concern, humor, ridicule etc... All were considered best friends but my mind would trigger different impulses for each. It seems pretty normal, alot of people do the same thing. Well heres where it gets a bit deeper, the reason I believe that to this day I still have tremendous sadness towards the loss of my first girlfriend that died in 1978. That was what, 33 years ago, but I can sometimes relive it all over. PTSD (Post Trumatic Stress Disorder) hardly, it doesnt interfere with my ability to function, doesnt hinder my everyday activities. I can carry on without falling into a depressive state, all that happens is a total recall. Whats unique about her and a select few others in my life, is I hadnt presented the "end of life" scenario. Let me try to explain this one. As a small child, not ever having lost a family member, friend, or someone close to me until I was 11, for whatever reason, I would have functional day dreams of losing a particular person from my life to the point it would bring me to tears and after that would happen, I would have this extreme sense of relief. Now I know, or I am pretty sure that prior to 11 my scenarios were that of my closest friend moving away forever, never to be seen again. I did this with everyone I was close too, it was so odd.
Along comes Katie in 1975, she consumes my life. My ultimate best friend and by description first official girl friend. She was everything to me, as was I to her. If we werent together, we were on the phone for hours. I had never run my farewell scenario with her at any time, for whatever reason, I just never did. It was the one thing that allowed me the ability to disconnect emotion from anyone I chose at any time. The oddest thing I had ever encountered. Well, her passing in 1978 came as a complete shock to me, I was totally devastated and crushed. I cried for days, unable to accept the fact that she was truly dead. I just expected to see her the next time I went to the house. Even seeing the white coffin in the funeral home, following it to the gravesite just didnt seem real to me. Took me several months to realize she was truly gone, 33 years later it still hurts.
I came across some of what I was looking for in regards to the mental oddities regarding the emotional detachment I had with others. Its a common trait, Norepinephine issues most likely to blame in most case studies. Dysautonomia patients have a severe intimacy disconnect along with other facets of emotional and supportive disconnects that follow suit. My early childhood detachment preparation has some merit due to circumstance within the household but after coming across two other ANS sufferers in a medical chat room, I had time to fully grasp the fact that this was just an early manifest of what was to come. Its scary to meet people that suffer the same way and have the same oddities that now become more of just a normal trait of the syndrome.
I have held a childhood memory of guilt to this day that still haunts me. When I tell people I get mixed reviews anything from: boys will be boys, to you should have told your parents. Whatever the proper way to have handled it was, its long passed, the memory of what I did plays like it was yesterday yet I am pretty sure I was 8 years old when it happened. While vacationing in Canada with my older brother and father, I had taken a vast interest in large frogs and dragon flies. Each day I grabbed as many frogs as I could and played with them, one in particular was absolutely huge with distinguishing marks on his back that made him easy to find daily. I would find dragon flies to bring to my frog friends. The entire week was devoted to keeping them happy, fed, clean and safe. I was the perfect friend to them.
Our week ended and I realized that I wouldnt see them anymore but I was determined to take the largest one with me, and I grabbed him to bring him with us back home to the US. My father told me that he couldnt come along and I begged and pleaded with him with no success. The owner of the lodge finally explained to me that a Canadian frog couldnt live in US, he would die because he didnt have Canadian air. I didnt understand death, lost some goldfish and two annoying birds but I did understand air, he made sense. So I walked the huge frog down another path towards the water edge, placed him on the concrete slab next to me and said my goodbyes. I was very sad, I didnt want to say goodbye but knew I couldnt take him home either. I told him to go, he just sat there. I tried to push him towards the water, he refused to move. It was as if he didnt want to leave me either. I knealt down, reasoned with him as any 8 year old would do and again suggested he go because I needed to leave. Still, he would not budge. For reasons unknown to me, something I have never been able to figure out yet as I said, I have lived with the guilt of my actions of this day since, I picked up the largest rock I could lift and I dropped it on my frog friend, crushing him. I can remember the feeling of extreme remorse as I realized what I had just done, it was that very second that my father called from the hill top and said we were leaving. I pushed the rock off my frog friends mutilated body, grabbed his leg and threw him as far as I could into the water, I then pushed the rock into the water as well. I came up the hill and was confronted by my father who asked me several questions that I am pretty sure he had witnessed what I had done but I swore I had let the frog go. It was a long 10 hour trip home, spent the time that I was awake thinking about that frog. That event cost me numerous Hail Marys and Our Fathers at confession but that didnt erase the guilt. Its a haunting reminder to me throughout my life.
I think what makes it even more odd to me is that I have more remorse for that frog then I do for the loss of certain people in my life. Its odd how I always thought I was wired wrong but come to find out alot lies in the depletion of certain brain chemical. I hope to have a handle on it someday, I'd like to have equal emotional memories of my lost paternal grandparents. I idolized both of them yet I accept the loss of my grandfather without the loss of another tear knowing he died a good 20 years too young, but cant grasp the loss of my grandmother who died a year shy of 90 from a stroke.
In closing its relevant to say that given the broad spectrum of the syndrome, nothing can be taken for granted anymore. Things that were bottled up for years out of fear that you werent "quite right" can now be discussed openly in medical chat rooms because others share the same situations. When its too unbelievable to absorb in your own mind chances are theres a medical reason behind it. I am now a believer on that one! Not sure what the answer is to correct it, I have some serious medication alterations coming up I am sure as they pinpoint the exact cause and effect of all the body functions combined. Nevertheless, feels good to be normal again and moving on to better educate not only myself but others I come in contact with. I'd like to blog more often but sitting long periods of time causes so much excessive pain in my lower legs/feet that it makes it hard to concentrate on the topic, I constantly have to go back and reread the previous paragraph. For those people suffering Fibromyalgia, you can appreciate what I am talking about. Feels like your toes and between your toes are going to burst. VERY unconfortable! Thanks for reading
I was a happy child, very passive and for the most part the ultimate mediator. I could calm a situation between two or more people so they could focus on the important things at hand. I dont recall any serious anger issues as a small child, or issues of rage over simplistic situations I pretty much followed the rules and tried to make sure I made everyone happy. I had one thing that I recall I was famous for when I didnt get my way, and now seeing my son do the identical thing without any knowledge of my childhood makes me laugh internally but also expresses some concern that hes way too much like me, will he also inheirit the health issues as well? I pray daily he does not, hes too precious in my life to even consider the possibility something could be wrong with any of my kids. Moving on......
As I was saying, my infamous attempts to level the playing field with my adult family members to get my own way consisted of bringing suffering to myself. Taking a prized childhood possession to them for surrender if I didnt get my demands met. My mom and my grandparents I truly believe formulated the "no negotitation with terrorists" format this country has as a result of dealing with me as a child. They never gave in to me and would take my items that I declared meant nothing to me anymore without that trip to Dairy Queen or the ability to ride my bike in the rain, and they would hold their ground. Every kid uses some form of leverage, mine was always a disadvantage knowing that I really didnt want to lose the item but knowing that meant so much to me how could they not say yes to my demands? Took me a good three years to grasp the concept that I wasnt winning with them. Slow learner or defiant, strong willed, determined little boy who just wouldnt take no for an answer? I'll allow you to draw your own conclusion.
I bring this up only to point out the disconnect of the mental status of Dysautonomia. It never occured to me back then because of my age, that I had so many mental disconnects from things that meant alot to me. I could walk away from sentimental items of choice but others I couldnt live without. If I had three best friends and they all broke their left legs identically, each one would get a totally different response from me whether it be concern, humor, ridicule etc... All were considered best friends but my mind would trigger different impulses for each. It seems pretty normal, alot of people do the same thing. Well heres where it gets a bit deeper, the reason I believe that to this day I still have tremendous sadness towards the loss of my first girlfriend that died in 1978. That was what, 33 years ago, but I can sometimes relive it all over. PTSD (Post Trumatic Stress Disorder) hardly, it doesnt interfere with my ability to function, doesnt hinder my everyday activities. I can carry on without falling into a depressive state, all that happens is a total recall. Whats unique about her and a select few others in my life, is I hadnt presented the "end of life" scenario. Let me try to explain this one. As a small child, not ever having lost a family member, friend, or someone close to me until I was 11, for whatever reason, I would have functional day dreams of losing a particular person from my life to the point it would bring me to tears and after that would happen, I would have this extreme sense of relief. Now I know, or I am pretty sure that prior to 11 my scenarios were that of my closest friend moving away forever, never to be seen again. I did this with everyone I was close too, it was so odd.
Along comes Katie in 1975, she consumes my life. My ultimate best friend and by description first official girl friend. She was everything to me, as was I to her. If we werent together, we were on the phone for hours. I had never run my farewell scenario with her at any time, for whatever reason, I just never did. It was the one thing that allowed me the ability to disconnect emotion from anyone I chose at any time. The oddest thing I had ever encountered. Well, her passing in 1978 came as a complete shock to me, I was totally devastated and crushed. I cried for days, unable to accept the fact that she was truly dead. I just expected to see her the next time I went to the house. Even seeing the white coffin in the funeral home, following it to the gravesite just didnt seem real to me. Took me several months to realize she was truly gone, 33 years later it still hurts.
I came across some of what I was looking for in regards to the mental oddities regarding the emotional detachment I had with others. Its a common trait, Norepinephine issues most likely to blame in most case studies. Dysautonomia patients have a severe intimacy disconnect along with other facets of emotional and supportive disconnects that follow suit. My early childhood detachment preparation has some merit due to circumstance within the household but after coming across two other ANS sufferers in a medical chat room, I had time to fully grasp the fact that this was just an early manifest of what was to come. Its scary to meet people that suffer the same way and have the same oddities that now become more of just a normal trait of the syndrome.
I have held a childhood memory of guilt to this day that still haunts me. When I tell people I get mixed reviews anything from: boys will be boys, to you should have told your parents. Whatever the proper way to have handled it was, its long passed, the memory of what I did plays like it was yesterday yet I am pretty sure I was 8 years old when it happened. While vacationing in Canada with my older brother and father, I had taken a vast interest in large frogs and dragon flies. Each day I grabbed as many frogs as I could and played with them, one in particular was absolutely huge with distinguishing marks on his back that made him easy to find daily. I would find dragon flies to bring to my frog friends. The entire week was devoted to keeping them happy, fed, clean and safe. I was the perfect friend to them.
Our week ended and I realized that I wouldnt see them anymore but I was determined to take the largest one with me, and I grabbed him to bring him with us back home to the US. My father told me that he couldnt come along and I begged and pleaded with him with no success. The owner of the lodge finally explained to me that a Canadian frog couldnt live in US, he would die because he didnt have Canadian air. I didnt understand death, lost some goldfish and two annoying birds but I did understand air, he made sense. So I walked the huge frog down another path towards the water edge, placed him on the concrete slab next to me and said my goodbyes. I was very sad, I didnt want to say goodbye but knew I couldnt take him home either. I told him to go, he just sat there. I tried to push him towards the water, he refused to move. It was as if he didnt want to leave me either. I knealt down, reasoned with him as any 8 year old would do and again suggested he go because I needed to leave. Still, he would not budge. For reasons unknown to me, something I have never been able to figure out yet as I said, I have lived with the guilt of my actions of this day since, I picked up the largest rock I could lift and I dropped it on my frog friend, crushing him. I can remember the feeling of extreme remorse as I realized what I had just done, it was that very second that my father called from the hill top and said we were leaving. I pushed the rock off my frog friends mutilated body, grabbed his leg and threw him as far as I could into the water, I then pushed the rock into the water as well. I came up the hill and was confronted by my father who asked me several questions that I am pretty sure he had witnessed what I had done but I swore I had let the frog go. It was a long 10 hour trip home, spent the time that I was awake thinking about that frog. That event cost me numerous Hail Marys and Our Fathers at confession but that didnt erase the guilt. Its a haunting reminder to me throughout my life.
I think what makes it even more odd to me is that I have more remorse for that frog then I do for the loss of certain people in my life. Its odd how I always thought I was wired wrong but come to find out alot lies in the depletion of certain brain chemical. I hope to have a handle on it someday, I'd like to have equal emotional memories of my lost paternal grandparents. I idolized both of them yet I accept the loss of my grandfather without the loss of another tear knowing he died a good 20 years too young, but cant grasp the loss of my grandmother who died a year shy of 90 from a stroke.
In closing its relevant to say that given the broad spectrum of the syndrome, nothing can be taken for granted anymore. Things that were bottled up for years out of fear that you werent "quite right" can now be discussed openly in medical chat rooms because others share the same situations. When its too unbelievable to absorb in your own mind chances are theres a medical reason behind it. I am now a believer on that one! Not sure what the answer is to correct it, I have some serious medication alterations coming up I am sure as they pinpoint the exact cause and effect of all the body functions combined. Nevertheless, feels good to be normal again and moving on to better educate not only myself but others I come in contact with. I'd like to blog more often but sitting long periods of time causes so much excessive pain in my lower legs/feet that it makes it hard to concentrate on the topic, I constantly have to go back and reread the previous paragraph. For those people suffering Fibromyalgia, you can appreciate what I am talking about. Feels like your toes and between your toes are going to burst. VERY unconfortable! Thanks for reading
Tuesday, July 19, 2011
Why Certain Injurys Never Hurt
I think most of us would agree that in some cases a splinter can be as painful at times as a severe sprain or even a broken bone. It all depends on the location of the little devil whether it can be ignored or it becomes the only thought that consumes your entire brain energy. Whatever the case, its your mind that has the final say on what is priority and what is going to be ignored until later.
I had my share of bumps and bruises growing up. Some are extremely memorable due to the origin of the injury or the pain level it created and in some cases the lack of pain sometimes made me recall it upon request throughout my life. I can remember sleighriding with my cousins when I was all of about 7 or 8 years old and I was given a sled that had no steering ability. It was point and go. The hill was extremely steep so you had to make sure you adjusted your timing just right. We were told we had to go home, I was insisting on going that one last time and thats usually when things happen right? Off I went, everything going as planned, picking up tremendous speed, essentially no one in my way except one lone person way down below. For whatever reason, I had gained so much speed that even that one lone person had suddenly become a target and I was going too fast to slow the sled and I had no way to steer. I yelled as loud as I could for them to get out of the way and with their back to me, they selected the wrong direction to get out of the way. As this person moved to my left and turned, they had no time at all to brace for impact. I hit him and my sled stopped but I kept going and I landed face first in the hard ice covered snow. I had screamed so loud from the pain, I was oblivious to what had happened to the other person I had hit. They too were screaming in excruciating pain.
Within less than a minute, my older brother was at my side trying to figure out how bad I was. It was just dark enough that he had to almost carry me to a lit area to see what had happened. He knew blood was everywhere but he couldnt see the origin of the injury. Parents began to appear to lend a hand and out of the corner of my eye I could see them lifting the other child I had hit who was now crying much louder than I was and my pain had suddenly began to disappear. I had difficulty speaking but I had asked if the other person was ok and my brother said he wasnt sure yet. I told him to run over and tell that person I was so sorry to which he said I could do so myself later, it was my cousin that I had hit. I was mortified. My cousin was three months older than I was and to think that I had hurt him just upset me beyond words. I no longer felt pain, it was the oddest thing.
Turns out, with the help of a flashlight from a neighbor, that I had split my lower lip completely open and cut my chin. No other injuries to my face, I was still crying uncontrollably not due to pain anymore but due to the fact that I had hurt someone and to make matters worse a family member. My cousin was carried home for evaluation of his injury, his mother was an RN so I couldnt wait to get home to see him. By now all the adults in the house were frantic because he was home with an injury and the person that carried him home advised that another child had been injured as well and it was revealed by the injured cousins brother that I was the other child that got hurt. Needless to say, when I was spotted walking towards the house on my own two feet, there was a huge relief that I had sustained minor injuries.
No hospital visits needed, ice packs and lots of hugs were the remedy we needed. I looked in the mirror of course as soon as I got home and I was shocked how bad I looked. As a small child you can't visualize healing so I just felt I would always look that way. As for my cousin, poor kid. The bruise on his leg was massive. How his leg hadnt broke was purely amazing. I cant recall if I had even broke the skin on his leg, I think all the thick clothing prevented that from happening but I know he had trouble walking for days.
The purpose of bringing that up was the point at which I had first recalled the ability to "will" off pain so to speak. Similar to the broken arm issue from a previous post my body had the ability to pick and chose areas of the body to target pain for chronic, relentless and miserable daily suffering but also had the ability to completely shut down an area of obvious trauma i.e. open lip/chin and make that pain go away completely.
Dysautonomia is such a complex syndrome. I have spent as I said countless hours online researching all kinds of data in reference to things directly associated with me but I also read blogs and forums that touch on either things to come or what others have in common. The one thing that seems to be the biggest gray area is the pain disturbances. I have chronic back pain, two car accidents have helped my back to become quite vulnerable so I am always in constant pain there. I can't shut that off at all, it can't be ignored, forgotten etc... Along with that I have a pinched nerve that causes sciatica and peripheral neuropathy so again something that can't be ignored. Well it makes total sense. Its part of the CNS, its a nerve issue and the back injury is near the spinal cord which is surrounded by nerves so there is no way in the world the brain could shut that down.
Now I've mentioned I had a surgery on my left hip that left me with a 6 inch incision. The following day I returned to work, no pain killers, mild discomfort more so from the sutures. I had nothing but complications, two more surgeries that led to a staph infection and IV meds for 31 days. Now I am past all that by just over 6 months and no issues that I am aware of except: I now get a severe pain in my left arm near the area where the PICC (Peripherally Inserted Central Catheter ) was inserted and if I touch the adjacent area or anywhere with 4 inches, I can actually cause enough pain for a blackout. If I leave it alone, I become systematic, I start having chest pains, dizzyness, some visual disturbances until it passes. Very odd and it happens upwards of three to five times a day.
My thigh, thats usually numb and has been since the surgery, I get the most intense, sharp, disturbing pain that only lasts a few seconds but is so violent I have often blurted out an expletive even with my children sitting there which of course my son just looks at me like I have three heads because he can't quite figure out what SpongeBob has done to get me so pissed. This pain however hasnt yet manifested any type of other followup symptoms but I am keeping a close eye on it.
Whats essentially happened to the best of my knowledge is my body has gone haywire and has picked mainly my extremities and my back as the target area for the most aggressive pain areas. My son will sometimes slap my leg joking around and I have to tell you, it feels like he hit me with a hot spatula. It stings for a good minute and actually makes me angry. I know he doenst understand, and I could never explain it too him but unless you live this, whats considered a touch to one person is considered abuse to people with Dysautonomia. The medication I am on that keeps the Fibromyalgia symptoms somewhat under control I am finding that my body is working on ways to overcome the relief I get from that medication. Now the discomfort I used to get from my shins down to my feet is all centralized to my toes and in between my toes. You want to talk about pain and discomfort? Thats some serious assault there. When my thumbs act up, its extremely annoying as well. Very painful and something I found out purely by accident, my son happened to grab my thumb when I was at the maximum threshold of pain but before I could react and pull away he stated that my thumb was ice cold. So I put up with him grabbing both of my thumbs and squeezing them evaluating that both were equally cold. I was seeing stars as he did it but it was a helpful piece of the puzzle that led me to the sink and the hot water test. I could hold my thumbs under steaming hot water indefinately when in this phase.
I had read some forums of people that had the thumb issues and had been blown off by their doctors because they had Blackberrys. There is a new syndrome I guess Blackberry Thumb Syndrome which is similar to Gamers Thumb, people that play too many video games. I do have a BlackBerry but I dont use the keyboard enough to have that issue. I am pretty certain it wouldnt cause the thumbs to go ice cold either.
So in closing thinking back to the numerous injuries I had, the ones that didnt hurt that should have and the ones that did hurt that shouldnt have are all in relation to the nerve location and most effected areas of Dysautonomia. It is a targeting syndrome so alot more things make sense. I still have mysteries to solve which I am determined to do so. Thanks for reading.
I had my share of bumps and bruises growing up. Some are extremely memorable due to the origin of the injury or the pain level it created and in some cases the lack of pain sometimes made me recall it upon request throughout my life. I can remember sleighriding with my cousins when I was all of about 7 or 8 years old and I was given a sled that had no steering ability. It was point and go. The hill was extremely steep so you had to make sure you adjusted your timing just right. We were told we had to go home, I was insisting on going that one last time and thats usually when things happen right? Off I went, everything going as planned, picking up tremendous speed, essentially no one in my way except one lone person way down below. For whatever reason, I had gained so much speed that even that one lone person had suddenly become a target and I was going too fast to slow the sled and I had no way to steer. I yelled as loud as I could for them to get out of the way and with their back to me, they selected the wrong direction to get out of the way. As this person moved to my left and turned, they had no time at all to brace for impact. I hit him and my sled stopped but I kept going and I landed face first in the hard ice covered snow. I had screamed so loud from the pain, I was oblivious to what had happened to the other person I had hit. They too were screaming in excruciating pain.
Within less than a minute, my older brother was at my side trying to figure out how bad I was. It was just dark enough that he had to almost carry me to a lit area to see what had happened. He knew blood was everywhere but he couldnt see the origin of the injury. Parents began to appear to lend a hand and out of the corner of my eye I could see them lifting the other child I had hit who was now crying much louder than I was and my pain had suddenly began to disappear. I had difficulty speaking but I had asked if the other person was ok and my brother said he wasnt sure yet. I told him to run over and tell that person I was so sorry to which he said I could do so myself later, it was my cousin that I had hit. I was mortified. My cousin was three months older than I was and to think that I had hurt him just upset me beyond words. I no longer felt pain, it was the oddest thing.
Turns out, with the help of a flashlight from a neighbor, that I had split my lower lip completely open and cut my chin. No other injuries to my face, I was still crying uncontrollably not due to pain anymore but due to the fact that I had hurt someone and to make matters worse a family member. My cousin was carried home for evaluation of his injury, his mother was an RN so I couldnt wait to get home to see him. By now all the adults in the house were frantic because he was home with an injury and the person that carried him home advised that another child had been injured as well and it was revealed by the injured cousins brother that I was the other child that got hurt. Needless to say, when I was spotted walking towards the house on my own two feet, there was a huge relief that I had sustained minor injuries.
No hospital visits needed, ice packs and lots of hugs were the remedy we needed. I looked in the mirror of course as soon as I got home and I was shocked how bad I looked. As a small child you can't visualize healing so I just felt I would always look that way. As for my cousin, poor kid. The bruise on his leg was massive. How his leg hadnt broke was purely amazing. I cant recall if I had even broke the skin on his leg, I think all the thick clothing prevented that from happening but I know he had trouble walking for days.
The purpose of bringing that up was the point at which I had first recalled the ability to "will" off pain so to speak. Similar to the broken arm issue from a previous post my body had the ability to pick and chose areas of the body to target pain for chronic, relentless and miserable daily suffering but also had the ability to completely shut down an area of obvious trauma i.e. open lip/chin and make that pain go away completely.
Dysautonomia is such a complex syndrome. I have spent as I said countless hours online researching all kinds of data in reference to things directly associated with me but I also read blogs and forums that touch on either things to come or what others have in common. The one thing that seems to be the biggest gray area is the pain disturbances. I have chronic back pain, two car accidents have helped my back to become quite vulnerable so I am always in constant pain there. I can't shut that off at all, it can't be ignored, forgotten etc... Along with that I have a pinched nerve that causes sciatica and peripheral neuropathy so again something that can't be ignored. Well it makes total sense. Its part of the CNS, its a nerve issue and the back injury is near the spinal cord which is surrounded by nerves so there is no way in the world the brain could shut that down.
Now I've mentioned I had a surgery on my left hip that left me with a 6 inch incision. The following day I returned to work, no pain killers, mild discomfort more so from the sutures. I had nothing but complications, two more surgeries that led to a staph infection and IV meds for 31 days. Now I am past all that by just over 6 months and no issues that I am aware of except: I now get a severe pain in my left arm near the area where the PICC (Peripherally Inserted Central Catheter ) was inserted and if I touch the adjacent area or anywhere with 4 inches, I can actually cause enough pain for a blackout. If I leave it alone, I become systematic, I start having chest pains, dizzyness, some visual disturbances until it passes. Very odd and it happens upwards of three to five times a day.
My thigh, thats usually numb and has been since the surgery, I get the most intense, sharp, disturbing pain that only lasts a few seconds but is so violent I have often blurted out an expletive even with my children sitting there which of course my son just looks at me like I have three heads because he can't quite figure out what SpongeBob has done to get me so pissed. This pain however hasnt yet manifested any type of other followup symptoms but I am keeping a close eye on it.
Whats essentially happened to the best of my knowledge is my body has gone haywire and has picked mainly my extremities and my back as the target area for the most aggressive pain areas. My son will sometimes slap my leg joking around and I have to tell you, it feels like he hit me with a hot spatula. It stings for a good minute and actually makes me angry. I know he doenst understand, and I could never explain it too him but unless you live this, whats considered a touch to one person is considered abuse to people with Dysautonomia. The medication I am on that keeps the Fibromyalgia symptoms somewhat under control I am finding that my body is working on ways to overcome the relief I get from that medication. Now the discomfort I used to get from my shins down to my feet is all centralized to my toes and in between my toes. You want to talk about pain and discomfort? Thats some serious assault there. When my thumbs act up, its extremely annoying as well. Very painful and something I found out purely by accident, my son happened to grab my thumb when I was at the maximum threshold of pain but before I could react and pull away he stated that my thumb was ice cold. So I put up with him grabbing both of my thumbs and squeezing them evaluating that both were equally cold. I was seeing stars as he did it but it was a helpful piece of the puzzle that led me to the sink and the hot water test. I could hold my thumbs under steaming hot water indefinately when in this phase.
I had read some forums of people that had the thumb issues and had been blown off by their doctors because they had Blackberrys. There is a new syndrome I guess Blackberry Thumb Syndrome which is similar to Gamers Thumb, people that play too many video games. I do have a BlackBerry but I dont use the keyboard enough to have that issue. I am pretty certain it wouldnt cause the thumbs to go ice cold either.
So in closing thinking back to the numerous injuries I had, the ones that didnt hurt that should have and the ones that did hurt that shouldnt have are all in relation to the nerve location and most effected areas of Dysautonomia. It is a targeting syndrome so alot more things make sense. I still have mysteries to solve which I am determined to do so. Thanks for reading.
Sunday, July 17, 2011
Falling Asleep Anywhere
It seems when you buy a new car, suddenly all you ever see on the road is the same kind of car you purchased. When you get inside information about a new restaurant or night club you assume you'll be the only one that has access to that and when you get there to see theres an hour or more wait, you feel justification to be angry with the management.
Well the same theory seems to be in place on a different level concerning the newly diagnosed Dysautonomia. Now its a daily look back in the archives of my mind and my days are filled with alot of "holy crap" moments. So thats why that happened. Now it makes total sense. Wow, I just thought I over did it. All things that went through my mind back then but as I can recall on some occasions, some early signs were present that were just missed by coincedence.
I have always been a very active minded person, even as a child I would run numerous scenarios through my mind of how certain things should play out, or perhaps run options of things that could be done that day with the criteria of time constraints in place etc... So I may be sitting there in Sunday mass but my mind at the time very well could have been plotting the afternoon out regarding friends and riding bikes. We all day dream, I just took mine very serious and thankfully the Catholic religion is almost so repetitive that you can have your mind on autopilot to run the numerous sit, stand, kneel motions.
What I am remembering as key information in regards to my activities of the day, I always had to figit. Not like an annoying type that I had to be threatened with a back hand but just simple, heel tap, or finger on leg, always some sort of movement. I was always doing that, had kids comment on it but it didnt mean anything back then. I wasnt ADHD, or ADD, nothing like that, just this constant simple movement that wasnt to any particular beat or pattern, it just had to be done. The consequence for lack of this movement was the almost immediate loss of conscious state of mind. I would drift off to sleep no matter what the position I was in at that moment and that could last for minutes or hours all depending on surroundings. I never realized that back then as a child, I had the presense of mind to realize that if I kept moving slightly, I could prevent the sleeping sensation. I still to this day do the same identical thing and I have to actually apologize to people I dont know that I move alot when seated. Of course now, the added amount of complications has amplified the simplicity of my childhood remedy so now I had to add an occasional leg shift or arm cross followed by a full readjust in the seat I am in.
I have been diagnosed with OSA (Obstructive Sleep Apnea), Narcalepsy, and soon by popular demand HJS ( Hypnagogic Jerk Syndrome). The OSA was determined in the mid 90's, I suddenly began to sleep upwards of 32 hours in a row, yes 32 hours, and would feel as though I hadnt slept at all. I had a terrible drinking problem during the early part of this discovery which was 1995, I began to fall asleep everywhere. I had actually fallen asleep standing up and had my friend not shouted at me when he did, I would have face planted to the cement. We all found it amusing of course, not realizing how life threatening it was. I still kept drinking and when the weekend would come I would sometimes sleep from Saturday right through till Monday morning and not at all feel refreshed. I had excellent medical insurance but hesitated going to doctor because I just felt I was drinking too much and my body was just telling me to slow it down. So I elected to back off on the alcohol. This did not come with a good outcome, I now began to fall asleep at traffic lights and on the interstate at speeds upwards of 70+ mph. I would be in the middle of a conversation and if I didnt have the infamous finger tap going or something moving while telling a story, out I went. I was now a danger and it became imperitive that I went to an ENT doctor for advice. I was advised of the procedure called a sleep study which I didnt mind having to spend the night at the hospital for evaluation. As we sat there and talked about the symptoms and how long they had been present, I had told him about my ability as a child to fall asleep virtually anywhere if I sat still for any length of time. He then mentioned Narcalepsy as a secondary diagnosis.
As my visit with him was wrapping up, one of the longest consultations I had with a doctor in my life, he saw a prescription in my hand and inquired as to what the medication was. This is where I began to doubt the Florida medical professionals. My family doctor of that time had been seeing me on a Workers Compensation case as well. So while he had made his recommendation for a referral to see this ENT that I was consulting with, he was briefed in full on why I needed to see him and he also made the referral based on his discovery of "possible sleep apnea" which is how he addressed the transfer of medical to the ENT. So prior to seeing the ENT, I stopped by my family doctor to get a prescription filled for the Workers Compensation case while I was in the same building. He wrote me a script for Percocet, 10/320 every 3-4 hours as needed for pain. I had split my sternum and separated numerous ribs moving equipment at a previous job so my pain level was freakishly high. A later post will include that injury as a part of the Dysautonomia as well, its notoriously responsible for chest connective tissue failure which would explain why no one had an explanation as to why the sternum split without impact. My injury was consistant with that of a football player being hit by another player helmut first. Like I said, diagnosis made, a lifetime of "holy crap" discoveries to uncover.
So getting back on track, the ENT almost threw his chair against the wall. He was so pissed that a doctor with knowledge of a life threatening sleep disorder would give me stimulating narcotics known to slow your minds ability to react to situation of oxygen deprivation. He was outraged. Meanwhile I was popping them like M&M's as prescribed and yes, drinking sometimes using alcohol to wash the pills down. I never said I was an inteligent alcoholic, show me one that is. I had been doing it for so long it was second nature so the thought it was related to my current situation wasnt a thought.
The sleep study was performed and on a Sunday I was contacted by the ENT that I had best be in his office when he opened on Monday morning no if, ands or buts. A doctor calling on a Sunday usually meant you were screwed so I prepared for the worst.
I was at his office as the deadbolt retracted from his lobby door and before long sitting in front of him. He was coming unglued. Had no idea how I was still able to be sitting there alive in front of him. My sleep apnea was so severe that I essentially stopped breathing so many times through the night that the technician almost considered stopping the test. My oxygen level was at 50%, and this was all on a sober, unmedicated test night. He was beyond words with the thought of what could have been if all factors were in place while the test was conducted. He then revealed the Narcalepsy connection. My ability to fall asleep while talking or sitting still, this dating back long before the most severe symptoms of the OSA became present.
I was immediately set up for the next sleep study and this one was the corrective sleep study. It was determined that while wearing a BYPAP (Bilevel Positive Airway Pressure) machine, I was able to return to normal oxygen saturation, REM (Rapid Eye Movement) sleep patterns for a more restful sleep, and almost zero sleep interruptions.
It took me until 1998, almost 3 years later to obtain the equipment needed, I decided instead to eliminate the use of the pain killers and over time I found that this seemed to help. I still would fall asleep on occassion in the most unusual places, and sometimes while driving mostly at stop lights that were extended in time for traffic concerns. It seemed to me that I had improved. In 1997, I had quit drinking and I had also gained about 35 lbs so my sleep symptoms began to surface again. It wasnt until I had a severe apnea episode that had caused me such discomfort that finally sent me for the equipment in 1998. If anyone ever experiences the feeling I had that evening, I think you'll agree that it was a long overdue intervention. I can only describe it as my mind being fully alert but realizing that every signal to move an extremity was not being processed due to the total lack of feeling anywhere in my body. I was completely numb, information was being formatted but no communication with the host. I had enough time to realize I was screwed and as my mind scrambled to assess the situation, my last ditch effort was a command to breath. It was as if I had been under water for 5 minutes as I deeply sucked in air and this rush of feeling began to come back to my body. It almost hurt all the ends of my fingers and toes and it went in a very patterned fashion, down side, to legs then up other side through arm, across shoulder to other arm and then this feeling of excessive warmth in my chest. I had a BYPAP within two days.
Its the Narcalepsy thats always taunted me since I was a kid. Falling asleep in the loudest, hardest, most unpredictable locations imaginable and somewhere along the line, I was able to figure out all it took was a simple movement to distract the episode from happening. I missed my calling as an MD.
The HJS is something that usually happens when I am just drifting off to sleep and it feels as though my body has become airborn with this jolt of super muscle spasm. I have experience an upright version of this as well in my neck that literally feels as if I was shot. Its beyond painful but because I have dealt with this for over 30+ years, and the nocturnal HJS spasm is more a nuisance rather than painful, I have just blown it off until now. I can finally start to put together all the pieces of this puzzle and interlock them into my complete medical biography. HJS and Narcalepsy coexist and usually have the same nuerological disturbance pattern. I just wish after 5 sleep studies I could have had a good HJS so they could have seen me do a Linda Blair right off the sheets. I only contributed some sort of peripheral left leg spasm which turns out, yep you guessed it, another side effect of the Dysautonomia.
I havent put together exactly how many specialists I have seen over the years but its in the teens or better and it amazes me that after all the years passed, it takes all the symptoms to happen in one year for the red flag to go up and see the connection between past and present formulating a diagnosis. Its nice to know, dont get me wrong but from a progressive stand point, I have gotten so much worse that my energy levels are almost depleated on a daily basis to the point of exhaustion but my mind is wide awake.
In closing I find that my blogs have taken on a "novel" format. Its hard not to fully explain certain situations. Not only for the benefit of someone reading this who might be trying to self diagnose their issues but for my sake. I am finding certain mind functions have become difficult as well. I am losing my thought process far too often, becoming forgetful again and I think the more information I can put each post the more I have to reflect on later should I have difficulty recalling issues. Of course password retention will be key here so lets pray thats the last thing that goes. Thanks for reading
Well the same theory seems to be in place on a different level concerning the newly diagnosed Dysautonomia. Now its a daily look back in the archives of my mind and my days are filled with alot of "holy crap" moments. So thats why that happened. Now it makes total sense. Wow, I just thought I over did it. All things that went through my mind back then but as I can recall on some occasions, some early signs were present that were just missed by coincedence.
I have always been a very active minded person, even as a child I would run numerous scenarios through my mind of how certain things should play out, or perhaps run options of things that could be done that day with the criteria of time constraints in place etc... So I may be sitting there in Sunday mass but my mind at the time very well could have been plotting the afternoon out regarding friends and riding bikes. We all day dream, I just took mine very serious and thankfully the Catholic religion is almost so repetitive that you can have your mind on autopilot to run the numerous sit, stand, kneel motions.
What I am remembering as key information in regards to my activities of the day, I always had to figit. Not like an annoying type that I had to be threatened with a back hand but just simple, heel tap, or finger on leg, always some sort of movement. I was always doing that, had kids comment on it but it didnt mean anything back then. I wasnt ADHD, or ADD, nothing like that, just this constant simple movement that wasnt to any particular beat or pattern, it just had to be done. The consequence for lack of this movement was the almost immediate loss of conscious state of mind. I would drift off to sleep no matter what the position I was in at that moment and that could last for minutes or hours all depending on surroundings. I never realized that back then as a child, I had the presense of mind to realize that if I kept moving slightly, I could prevent the sleeping sensation. I still to this day do the same identical thing and I have to actually apologize to people I dont know that I move alot when seated. Of course now, the added amount of complications has amplified the simplicity of my childhood remedy so now I had to add an occasional leg shift or arm cross followed by a full readjust in the seat I am in.
I have been diagnosed with OSA (Obstructive Sleep Apnea), Narcalepsy, and soon by popular demand HJS ( Hypnagogic Jerk Syndrome). The OSA was determined in the mid 90's, I suddenly began to sleep upwards of 32 hours in a row, yes 32 hours, and would feel as though I hadnt slept at all. I had a terrible drinking problem during the early part of this discovery which was 1995, I began to fall asleep everywhere. I had actually fallen asleep standing up and had my friend not shouted at me when he did, I would have face planted to the cement. We all found it amusing of course, not realizing how life threatening it was. I still kept drinking and when the weekend would come I would sometimes sleep from Saturday right through till Monday morning and not at all feel refreshed. I had excellent medical insurance but hesitated going to doctor because I just felt I was drinking too much and my body was just telling me to slow it down. So I elected to back off on the alcohol. This did not come with a good outcome, I now began to fall asleep at traffic lights and on the interstate at speeds upwards of 70+ mph. I would be in the middle of a conversation and if I didnt have the infamous finger tap going or something moving while telling a story, out I went. I was now a danger and it became imperitive that I went to an ENT doctor for advice. I was advised of the procedure called a sleep study which I didnt mind having to spend the night at the hospital for evaluation. As we sat there and talked about the symptoms and how long they had been present, I had told him about my ability as a child to fall asleep virtually anywhere if I sat still for any length of time. He then mentioned Narcalepsy as a secondary diagnosis.
As my visit with him was wrapping up, one of the longest consultations I had with a doctor in my life, he saw a prescription in my hand and inquired as to what the medication was. This is where I began to doubt the Florida medical professionals. My family doctor of that time had been seeing me on a Workers Compensation case as well. So while he had made his recommendation for a referral to see this ENT that I was consulting with, he was briefed in full on why I needed to see him and he also made the referral based on his discovery of "possible sleep apnea" which is how he addressed the transfer of medical to the ENT. So prior to seeing the ENT, I stopped by my family doctor to get a prescription filled for the Workers Compensation case while I was in the same building. He wrote me a script for Percocet, 10/320 every 3-4 hours as needed for pain. I had split my sternum and separated numerous ribs moving equipment at a previous job so my pain level was freakishly high. A later post will include that injury as a part of the Dysautonomia as well, its notoriously responsible for chest connective tissue failure which would explain why no one had an explanation as to why the sternum split without impact. My injury was consistant with that of a football player being hit by another player helmut first. Like I said, diagnosis made, a lifetime of "holy crap" discoveries to uncover.
So getting back on track, the ENT almost threw his chair against the wall. He was so pissed that a doctor with knowledge of a life threatening sleep disorder would give me stimulating narcotics known to slow your minds ability to react to situation of oxygen deprivation. He was outraged. Meanwhile I was popping them like M&M's as prescribed and yes, drinking sometimes using alcohol to wash the pills down. I never said I was an inteligent alcoholic, show me one that is. I had been doing it for so long it was second nature so the thought it was related to my current situation wasnt a thought.
The sleep study was performed and on a Sunday I was contacted by the ENT that I had best be in his office when he opened on Monday morning no if, ands or buts. A doctor calling on a Sunday usually meant you were screwed so I prepared for the worst.
I was at his office as the deadbolt retracted from his lobby door and before long sitting in front of him. He was coming unglued. Had no idea how I was still able to be sitting there alive in front of him. My sleep apnea was so severe that I essentially stopped breathing so many times through the night that the technician almost considered stopping the test. My oxygen level was at 50%, and this was all on a sober, unmedicated test night. He was beyond words with the thought of what could have been if all factors were in place while the test was conducted. He then revealed the Narcalepsy connection. My ability to fall asleep while talking or sitting still, this dating back long before the most severe symptoms of the OSA became present.
I was immediately set up for the next sleep study and this one was the corrective sleep study. It was determined that while wearing a BYPAP (Bilevel Positive Airway Pressure) machine, I was able to return to normal oxygen saturation, REM (Rapid Eye Movement) sleep patterns for a more restful sleep, and almost zero sleep interruptions.
It took me until 1998, almost 3 years later to obtain the equipment needed, I decided instead to eliminate the use of the pain killers and over time I found that this seemed to help. I still would fall asleep on occassion in the most unusual places, and sometimes while driving mostly at stop lights that were extended in time for traffic concerns. It seemed to me that I had improved. In 1997, I had quit drinking and I had also gained about 35 lbs so my sleep symptoms began to surface again. It wasnt until I had a severe apnea episode that had caused me such discomfort that finally sent me for the equipment in 1998. If anyone ever experiences the feeling I had that evening, I think you'll agree that it was a long overdue intervention. I can only describe it as my mind being fully alert but realizing that every signal to move an extremity was not being processed due to the total lack of feeling anywhere in my body. I was completely numb, information was being formatted but no communication with the host. I had enough time to realize I was screwed and as my mind scrambled to assess the situation, my last ditch effort was a command to breath. It was as if I had been under water for 5 minutes as I deeply sucked in air and this rush of feeling began to come back to my body. It almost hurt all the ends of my fingers and toes and it went in a very patterned fashion, down side, to legs then up other side through arm, across shoulder to other arm and then this feeling of excessive warmth in my chest. I had a BYPAP within two days.
Its the Narcalepsy thats always taunted me since I was a kid. Falling asleep in the loudest, hardest, most unpredictable locations imaginable and somewhere along the line, I was able to figure out all it took was a simple movement to distract the episode from happening. I missed my calling as an MD.
The HJS is something that usually happens when I am just drifting off to sleep and it feels as though my body has become airborn with this jolt of super muscle spasm. I have experience an upright version of this as well in my neck that literally feels as if I was shot. Its beyond painful but because I have dealt with this for over 30+ years, and the nocturnal HJS spasm is more a nuisance rather than painful, I have just blown it off until now. I can finally start to put together all the pieces of this puzzle and interlock them into my complete medical biography. HJS and Narcalepsy coexist and usually have the same nuerological disturbance pattern. I just wish after 5 sleep studies I could have had a good HJS so they could have seen me do a Linda Blair right off the sheets. I only contributed some sort of peripheral left leg spasm which turns out, yep you guessed it, another side effect of the Dysautonomia.
I havent put together exactly how many specialists I have seen over the years but its in the teens or better and it amazes me that after all the years passed, it takes all the symptoms to happen in one year for the red flag to go up and see the connection between past and present formulating a diagnosis. Its nice to know, dont get me wrong but from a progressive stand point, I have gotten so much worse that my energy levels are almost depleated on a daily basis to the point of exhaustion but my mind is wide awake.
In closing I find that my blogs have taken on a "novel" format. Its hard not to fully explain certain situations. Not only for the benefit of someone reading this who might be trying to self diagnose their issues but for my sake. I am finding certain mind functions have become difficult as well. I am losing my thought process far too often, becoming forgetful again and I think the more information I can put each post the more I have to reflect on later should I have difficulty recalling issues. Of course password retention will be key here so lets pray thats the last thing that goes. Thanks for reading
Saturday, July 16, 2011
The Alcohol Connection
Setting aside all possibilities of trauma, Lymes disease, brain stem deformity or other suspected ways Dysautonomia can begin to take over your ANS system, there is one other way that I can honestly say I am 100% guilty of supplying my body with the ingredient for disaster if its truly the origin. This being the introduction of alcohol and the misuse of alcohol.
I was first introduced to alcohol when I was very young. Not in the conventional way, i.e. dare by friends in the neighborhood or at a sleep over but instead in an entirely different setting. I was from Bergen County NJ, brought up strict Catholic in an Italian/Irish household. We werent the A typical Italian side however, where the kids were offered wine at dinner. I had no clue what alcohol was in that household thanks to a VERY strict Irish grandmother to whom I idolized until the day she died in 2007.
My father had gotten involved with, of all things, the rodeo lifestyle. Even though he had severely broken his elbow in six places and required several pins to reconstruct it, that didnt stop him from being around that kind of element. He purchased a couple of horses that were specially trained to barrel race and he ended up with one of the fastest horses in the Northeast. The horse was so well known that she had to be snuck in with other live stock and entered into the event at the last minute otherwise people would withdraw from the event knowing they would lose to her.
This activity brought us into very rural areas of Sussex county and other rural counties nearby. It was there in 1975 that I met my very first girlfriend, Katie. She would become my life for the next three years and my world revolved around her, sadly she lost her fight with luekemia in spring of 1978 and it was something I never got over. It is however my drive to focus on places like St. Judes Childrens Hospital or charities that are similar that bring my heart back home to NJ such as Project LadyBug and Tomorrows Childrens Fund. I dont want to get totally of track of where this post was heading but I felt it was important to introduce the importance of why people are driven to chose certain charities.
Shortly after my initial introduction to the rodeo life and my first taste of rural lifestyle, I was influenced by Katies older brother to step up and become a real cowboy, drink beer like they do. Now I had just turned 9, and the way I was brought up, I knew this was an extremely bad idea but he kept insisting that it would be the only way that I could achieve the full cowboy experience and also get full respect from him to be his sisters "boyfriend". I look back now at this challenge and see that poor thought process for males concerning acceptence when it comes to a female is something that exists from childhood until the day you die. I never did ask how long he had been drinking but I do remember him saying over and over how it wouldnt kill me. Had we been able to fast forward many years I wonder if he would have said that? I was a full blown alcoholic who puked blood by morning and waited until just after 5pm to feel better to do it all over again.
His strategic badgering finally wore me down and this started my taste for alcohol. I didnt like the taste of beer at all, but when someone, especially your first girlfriends teen brother considers you a wimp because you cant handle it, you begin to deal with the awful taste. Every weekend I was alone with him, where Katie wasnt in the hospital, him and I were drinking beer. We had to do it early in the day because my stumbling into the walls, although amusing as hell to him and his other teen friends, would have meant some serious issues from his dad had he been caught lifting the beers from the other guys for his friends, himself and I. Lets face it, we were all just kids, I was the youngest, but the oldest was maybe 14.
This went on for years, got even easier as his friends would spend the night and bring in private stash and it was now obvious that the rodeo guys werent needed at all. I was always able to spend the night whenever Katie was home from the hospital, the only thing in the world she wanted other than to be healthy was to be with me. Yes we were kids, but we had a bond that was just precious and she was the ultimate companion in my life.
After Katie passed away, the rodeo lifestyle ended. By now, even my father had lost interest as if he had lost a daughter. When I close my eyes, I can still see that white coffin, even hear the words of the pastor, the overwhelming sadness of the living sisters as they tried desperately to enter the room where the coffin was. The father sat motionless as well as speechless just starting at that coffin, the mother, her body had not handled the stress of losing her little baby. She was hospitalized for kidney issues. A truly sad day that left me very empty inside as well as realizing that we never had the chance to say goodbye.
I felt a change inside me moving forward from that day, and I had met two new friends that would be instrumental in my decision to replace sadness with alcohol. By the time I was 13, I was drinking almost a half bottle of any liquor I could get my hands on. Between the three households of myself and the other two deliquents, we managed to keep ourselves very well stocked in hard liquor and beer became a thing of the past.
My mother went back to school leaving me a couple of evenings free at home to drink once I managed to get my younger brother to bed. I couldnt wait to hit the bottle and get my drink on. I would drink until I could barely walk and pass out in my room. How I managed to keep this concealed from my parents is still a full mystery to me. They werent aware of my alcohol issues until I had turned 21 and it seemed I was completely spiraling out of control. DUI, hospitalized twice, AA, therapists, interventions, medical issues, nothing worked, even random car accidents that could have killed me didnt stop the want or the need.
I was the worst kind of drinker as well, the black out drinker. Fully functional and dangerous but without any memory recall. Come to find out that this also is a side effect of the syndrome and looking back I do recall times that even very small amounts of alcohol would cause me to black out. My friends would reflect on something that happened and I would not have any memory of the event yet it was something that happened on or around my second drink. Makes sense now, my body was trying to shut me down or send a signal but I was on Alcoholic over drive. I would drive places and fall out of cars, having people look at me horrified that I had driven even 10 feet nevermind 40 miles. This path of destruction did however come to an end in 1997 and I am proud to say I am alcohol free with no desire whatsoever to drink. It was a long, hard road that may have paved a vicious path of future medical failures but I only have myself to blame.
It left me with what I thought was its exiting trademark, hand tremors, but that was something I always thought went away with the alcohol intake, perhaps it never did, who knows. I can say that Dysautonomia also skirts the wonderful side effects of Parkinsons so the hand tremors that I thought were gone with alcohol consumption, was probably just wishful thinking. A medication I was recently introduced to for the Fibromyalgia symptoms of this symdrome has helped with the hand tremors which may or may not have been the intended purpose. Who cares as long as I can now do things without shaking like a leaf.
In closing, alcohol may or may not be held responsible for all my issues with the ANS disorder but I can guarantee, it didnt help. I have warned my oldest daughter the risks of alcohol and dependency in our family so I can only pray she steers clear or just keeps it to a social level. I couldnt imagine any of my kids having to suffer the way I have medically over the years, let my mistakes be their guidance and knowledge to stay healthy. Thanks for reading, stay healthy.
I was first introduced to alcohol when I was very young. Not in the conventional way, i.e. dare by friends in the neighborhood or at a sleep over but instead in an entirely different setting. I was from Bergen County NJ, brought up strict Catholic in an Italian/Irish household. We werent the A typical Italian side however, where the kids were offered wine at dinner. I had no clue what alcohol was in that household thanks to a VERY strict Irish grandmother to whom I idolized until the day she died in 2007.
My father had gotten involved with, of all things, the rodeo lifestyle. Even though he had severely broken his elbow in six places and required several pins to reconstruct it, that didnt stop him from being around that kind of element. He purchased a couple of horses that were specially trained to barrel race and he ended up with one of the fastest horses in the Northeast. The horse was so well known that she had to be snuck in with other live stock and entered into the event at the last minute otherwise people would withdraw from the event knowing they would lose to her.
This activity brought us into very rural areas of Sussex county and other rural counties nearby. It was there in 1975 that I met my very first girlfriend, Katie. She would become my life for the next three years and my world revolved around her, sadly she lost her fight with luekemia in spring of 1978 and it was something I never got over. It is however my drive to focus on places like St. Judes Childrens Hospital or charities that are similar that bring my heart back home to NJ such as Project LadyBug and Tomorrows Childrens Fund. I dont want to get totally of track of where this post was heading but I felt it was important to introduce the importance of why people are driven to chose certain charities.
Shortly after my initial introduction to the rodeo life and my first taste of rural lifestyle, I was influenced by Katies older brother to step up and become a real cowboy, drink beer like they do. Now I had just turned 9, and the way I was brought up, I knew this was an extremely bad idea but he kept insisting that it would be the only way that I could achieve the full cowboy experience and also get full respect from him to be his sisters "boyfriend". I look back now at this challenge and see that poor thought process for males concerning acceptence when it comes to a female is something that exists from childhood until the day you die. I never did ask how long he had been drinking but I do remember him saying over and over how it wouldnt kill me. Had we been able to fast forward many years I wonder if he would have said that? I was a full blown alcoholic who puked blood by morning and waited until just after 5pm to feel better to do it all over again.
His strategic badgering finally wore me down and this started my taste for alcohol. I didnt like the taste of beer at all, but when someone, especially your first girlfriends teen brother considers you a wimp because you cant handle it, you begin to deal with the awful taste. Every weekend I was alone with him, where Katie wasnt in the hospital, him and I were drinking beer. We had to do it early in the day because my stumbling into the walls, although amusing as hell to him and his other teen friends, would have meant some serious issues from his dad had he been caught lifting the beers from the other guys for his friends, himself and I. Lets face it, we were all just kids, I was the youngest, but the oldest was maybe 14.
This went on for years, got even easier as his friends would spend the night and bring in private stash and it was now obvious that the rodeo guys werent needed at all. I was always able to spend the night whenever Katie was home from the hospital, the only thing in the world she wanted other than to be healthy was to be with me. Yes we were kids, but we had a bond that was just precious and she was the ultimate companion in my life.
After Katie passed away, the rodeo lifestyle ended. By now, even my father had lost interest as if he had lost a daughter. When I close my eyes, I can still see that white coffin, even hear the words of the pastor, the overwhelming sadness of the living sisters as they tried desperately to enter the room where the coffin was. The father sat motionless as well as speechless just starting at that coffin, the mother, her body had not handled the stress of losing her little baby. She was hospitalized for kidney issues. A truly sad day that left me very empty inside as well as realizing that we never had the chance to say goodbye.
I felt a change inside me moving forward from that day, and I had met two new friends that would be instrumental in my decision to replace sadness with alcohol. By the time I was 13, I was drinking almost a half bottle of any liquor I could get my hands on. Between the three households of myself and the other two deliquents, we managed to keep ourselves very well stocked in hard liquor and beer became a thing of the past.
My mother went back to school leaving me a couple of evenings free at home to drink once I managed to get my younger brother to bed. I couldnt wait to hit the bottle and get my drink on. I would drink until I could barely walk and pass out in my room. How I managed to keep this concealed from my parents is still a full mystery to me. They werent aware of my alcohol issues until I had turned 21 and it seemed I was completely spiraling out of control. DUI, hospitalized twice, AA, therapists, interventions, medical issues, nothing worked, even random car accidents that could have killed me didnt stop the want or the need.
I was the worst kind of drinker as well, the black out drinker. Fully functional and dangerous but without any memory recall. Come to find out that this also is a side effect of the syndrome and looking back I do recall times that even very small amounts of alcohol would cause me to black out. My friends would reflect on something that happened and I would not have any memory of the event yet it was something that happened on or around my second drink. Makes sense now, my body was trying to shut me down or send a signal but I was on Alcoholic over drive. I would drive places and fall out of cars, having people look at me horrified that I had driven even 10 feet nevermind 40 miles. This path of destruction did however come to an end in 1997 and I am proud to say I am alcohol free with no desire whatsoever to drink. It was a long, hard road that may have paved a vicious path of future medical failures but I only have myself to blame.
It left me with what I thought was its exiting trademark, hand tremors, but that was something I always thought went away with the alcohol intake, perhaps it never did, who knows. I can say that Dysautonomia also skirts the wonderful side effects of Parkinsons so the hand tremors that I thought were gone with alcohol consumption, was probably just wishful thinking. A medication I was recently introduced to for the Fibromyalgia symptoms of this symdrome has helped with the hand tremors which may or may not have been the intended purpose. Who cares as long as I can now do things without shaking like a leaf.
In closing, alcohol may or may not be held responsible for all my issues with the ANS disorder but I can guarantee, it didnt help. I have warned my oldest daughter the risks of alcohol and dependency in our family so I can only pray she steers clear or just keeps it to a social level. I couldnt imagine any of my kids having to suffer the way I have medically over the years, let my mistakes be their guidance and knowledge to stay healthy. Thanks for reading, stay healthy.
Broken Bones A Bit Too Frequently
It was discovered early on, probably by the middle of kindergarten that I was truly lactose intollerent and certain dairy products would make me very ill. This of course, the dairy I am suggesting, is a primary source of calcium for growing children. I still managed to eat certain ice creams, yogurt, some butters and skim milk so I hadnt been entirely cut off from the natural source of the calcium needed to provide for strong bones as I grew up.
With only shoulder dislocations, a few smashed toes resulting in the loss of toe nails, the usual skinned knees, and an occassional rusty nail stuck into my thigh, I was moving along pretty well in early childhood without any serious injuries or medical issues. That would all change in seventh grade however. From this point on, it seemed to always be the usual question, "what did he break this time?"
I had gone roller skating as I always had for many, many years. I was at the rink with friends and had taken the usual amount of falls doing stupid stunts that most kids do trying to impress their friends and by this time to get the attention of the girls. It was a full floor and I had gotten up a good amount of speed when I locked wheels with another kid and found myself going down yet again for the day. This time wasnt quite the same. With the 70's disco music cranking at maximum, I was able to hear a very audible cracking noise which immediately left my right hand numb. I remember lying there, feeling stupid that I was down on the floor again but being right handed and not being able to move it, even the slightest finger movement was almost an impossibility, I knew this fall was going to be an issue. Numerous friends and skating strangers tried to grab my left hand to pull me up as they went by but I just pulled away knowing I had to stay down, I was too busy trying to figure out why I had lost feeling in my hand. There was no pain, just completely numb. Finally an announcement over the loud speaker to clear floor and workers were advised that a skater was injured. My first thought of course was, "poor bastard", not realizing it was me that was the injured skater. I could see all the people to my right lining up off the floor trying to get a glimpse of what happened to me as two employees of the rink skated over to me.
The first to arrive, reached to my left arm and said, "come on, I'll help you up". I told him it seemed like a great thought but advised him that I had no feeling in my other arm. The older employee quickly began to assess the situation asking if I could feel and move my legs, which I was able to do. Asked if I had hit my head which I was pretty sure I had, but really couldnt remember anything but that loud cracking noise but I was able to comprehend everything and he looked directly into my eyes and I guess he felt the pupils were still looking north and not one east, one west. Looking back, crossing my eyes would have had some entertainment value, but I was a bit distracted by the numbness of my right hand. He finally got to the right arm questions. I told him I was completely numb from what I could perceive as the forearm to fingertips. He asked if he could pull up the sleeve on my long sleeve shirt to investigate the injury before moving me and I told him it was fine, I couldnt feel anything anyway so have at it. He slowly pulled back the sleeve and it was obvious to not only myself and the two rink workers but Stevie Wonder from 30 yards out was seeing the problem with this arm. It wasnt a compound fracture that came out of the skin but it had completely broke both bones in two and had given the illusion that my arm was another two inches or so longer. I thought the one rink employee was going to puke when he saw it and all I kept saying in my mind was "why doesnt this hurt?'
The elder of the two employees began to bark out commands for a splint type set up and ice so he could secure it before helping me up. He was extremely gentle when he began the process of installing the splint and while he did this the other employees had gathered around to either help set the arm in a stable way or gather information to contact my parents. The whole 911 option was not thought of when I was young, if you were talking, they got you up and walking so that your parents could bring you in for the ER run. The arm was fully secured and ice was applied. It was then and only then that pain had become an issue. All his lifting and moving to secure splint, not a problem at all. Getting me to my feet, no issues. Applying ice to the obvious area of the break, HOLY FRIGGING CRAP, pain was so intense I almost passed out.
My parents arrived to the rink, and then I was taken to the hospital. X-rays were a formality, anyone with a day of education could see it was broken it was only done to see if it broke clean or if it was going to need surgical intervention. A nurse came in to give me a shot to calm me down. Now I had completely broken both bones in my right arm near the wrist, hadnt complained once at the hospital about pain nor had I gotten anything for pain, I was a minor so that wasnt an option anyway. I was calmly sitting there minding my own business when she comes in and announces this. Never having broke a bone before, I just go along with it and the needle is to be injected into my left thigh. Seemed like it shouldnt be a real big deal. I could not have been more incorrect about that decision, she had hit a nerve or bone, something that caused me to almost suck the mattress up in my butt cheeks her only response was to tell me to relax. I was always a very respectful kid with adults, this needle hurt so much that my respectful gland of my brain was overrode by my adolesant foul mouth response system to which I yelled out "Relax??!!! Isnt that what this f#$king shot is supposed to do is relax me? This f#$king hurts like hell!!!!" She could only respond with shock I think but basically suggested that the more I tensed up the harder it would be. But by the time she finished that statement, the needle was out, and she was leaving the room. Just for the record, that so called "calming" needle caused me to miss two days of school because I was unable to walk at all due to the pain generated in the muscle of that left thigh. So I went in with a broken arm and left with a severely tortured leg from a needle which led to the inability to walk. Everyone wonders why I had a phobia of needles after that.
The doctor came in and sedated me with local agents, mostly to fog my brain and completely numb my arm so he could set the break and cast it. This would be the first time I realize that I am immune to certain types of medications used to "trick" the CNS (Central Nervous System) masking the pain. When he began to set the bone, I could feel everything now, unlike before when they were splinting it. Now the arm was completely live and everything the doctor did felt like he was intentionally trying to cause me so much pain that he could make me pass out. I came close twice.
Back then it didnt make sense to me how I had no sensation for so many hours but after injections my body was suddenly active and felt everything. It was the exact opposite of what the doctor intended but they contributed it to the fact that I was watching him set the arm and I had possibly created that thought in my mind that it hurt rather than the fact that I actually was feeling the pain the way my body internally was projecting it. I still cringe at the memory of that feeling of pure pain from the needle in the leg and the setting of the arm and now knowing that the medications given to sedate me essentially were blocked by my ANS disorder through what seems to be a combination of both stress displacement and blood supply to the proper nerve cluster.
After the cast was secured, I walked aimlessly in circles in front of the automatic door. I only remember this because they kept asking me to walk away from the door and I did hear them but it just didnt register. The drugs were now taking on the proper affects to my body long after the procedure was done.
I followed that bone break with a collar bone fracture a few years later, broke same wrist bones again, this time however while landing on my right elbow, I stress cracked both of them, completely wiped out right knee, all ligaments, cartilidge and fractured a bone under knee cap, fractured ankle, fractured foot twice, separation of sternum, split that and forced ribs to pull away, achilles both sides, also plantar fasciitis one foot, broke a few toes and I think that about covers all of them. Turns out that the Dysautonomia is a calcium depleating syndrome as well, so it leaves your bones weak. Of course when I broke bones all throughout high school I was "accident prone" per the doctor, not the possibility of anything underlying. No of course not, let me find it out 30 years later, much appreciated.
As this syndrome is a journey forward, its also a journey back to see how it crossed my lifes path and was overlooked. I understand that even the diagnosis in todays medical field of technology is one that most doctors steer away from due to the complexity of the syndrome, but the internet is the source that allows most people to go to their doctor with specific details to better assist the doctor in helping them help you/me. Thats my new goal now, I have the on going knowledge and research into this syndrome, so its up to me to keep my doctor informed on what my needs are now.
There arent any miracle drugs out there that can cure all of the symptoms without causing some other kind of side effect that is sometimes worse then what you started with. My frustration lies with the doctors that say "you can't feel that way" or "thats not a usual side effect for that medicine, I doubt its causing that problem". I know my body EXTREMELY well. A person with OCD (Obsessive Compulsive Disorder) ((another known and highly tracked side effect of the syndrome by the way)) makes mental notes of all things in their lives that hinder A to B conclusions. So when it comes to medical, ANYTHING out of the ordinary is immediately documented and if its super serious, the doctor is contacted ASAP. Thats when I usually get some BS (Male Cow Poop) about how the meds didnt have sufficient time to build up in my system yada yada yada. Well guess what doc? With this diagnosis, do you have time to apologize for the numerous negative and unsupportive comments you made to me over the past year +? Or perhaps explain why you, the SPECIALIST, missed this and my regular family doctor went over your head to order all the tests that ended up bringing her towards this conclusion? Welcome to Floridas healthcare system. They are so used to dealing with retirement aged individuals that middle aged people like myself must be faking our symptoms because they have to actually work and think about all possiblilities of why this is happening.
Another post completed, time to relax and consider the next subject to be covered. Thanks for reading.
With only shoulder dislocations, a few smashed toes resulting in the loss of toe nails, the usual skinned knees, and an occassional rusty nail stuck into my thigh, I was moving along pretty well in early childhood without any serious injuries or medical issues. That would all change in seventh grade however. From this point on, it seemed to always be the usual question, "what did he break this time?"
I had gone roller skating as I always had for many, many years. I was at the rink with friends and had taken the usual amount of falls doing stupid stunts that most kids do trying to impress their friends and by this time to get the attention of the girls. It was a full floor and I had gotten up a good amount of speed when I locked wheels with another kid and found myself going down yet again for the day. This time wasnt quite the same. With the 70's disco music cranking at maximum, I was able to hear a very audible cracking noise which immediately left my right hand numb. I remember lying there, feeling stupid that I was down on the floor again but being right handed and not being able to move it, even the slightest finger movement was almost an impossibility, I knew this fall was going to be an issue. Numerous friends and skating strangers tried to grab my left hand to pull me up as they went by but I just pulled away knowing I had to stay down, I was too busy trying to figure out why I had lost feeling in my hand. There was no pain, just completely numb. Finally an announcement over the loud speaker to clear floor and workers were advised that a skater was injured. My first thought of course was, "poor bastard", not realizing it was me that was the injured skater. I could see all the people to my right lining up off the floor trying to get a glimpse of what happened to me as two employees of the rink skated over to me.
The first to arrive, reached to my left arm and said, "come on, I'll help you up". I told him it seemed like a great thought but advised him that I had no feeling in my other arm. The older employee quickly began to assess the situation asking if I could feel and move my legs, which I was able to do. Asked if I had hit my head which I was pretty sure I had, but really couldnt remember anything but that loud cracking noise but I was able to comprehend everything and he looked directly into my eyes and I guess he felt the pupils were still looking north and not one east, one west. Looking back, crossing my eyes would have had some entertainment value, but I was a bit distracted by the numbness of my right hand. He finally got to the right arm questions. I told him I was completely numb from what I could perceive as the forearm to fingertips. He asked if he could pull up the sleeve on my long sleeve shirt to investigate the injury before moving me and I told him it was fine, I couldnt feel anything anyway so have at it. He slowly pulled back the sleeve and it was obvious to not only myself and the two rink workers but Stevie Wonder from 30 yards out was seeing the problem with this arm. It wasnt a compound fracture that came out of the skin but it had completely broke both bones in two and had given the illusion that my arm was another two inches or so longer. I thought the one rink employee was going to puke when he saw it and all I kept saying in my mind was "why doesnt this hurt?'
The elder of the two employees began to bark out commands for a splint type set up and ice so he could secure it before helping me up. He was extremely gentle when he began the process of installing the splint and while he did this the other employees had gathered around to either help set the arm in a stable way or gather information to contact my parents. The whole 911 option was not thought of when I was young, if you were talking, they got you up and walking so that your parents could bring you in for the ER run. The arm was fully secured and ice was applied. It was then and only then that pain had become an issue. All his lifting and moving to secure splint, not a problem at all. Getting me to my feet, no issues. Applying ice to the obvious area of the break, HOLY FRIGGING CRAP, pain was so intense I almost passed out.
My parents arrived to the rink, and then I was taken to the hospital. X-rays were a formality, anyone with a day of education could see it was broken it was only done to see if it broke clean or if it was going to need surgical intervention. A nurse came in to give me a shot to calm me down. Now I had completely broken both bones in my right arm near the wrist, hadnt complained once at the hospital about pain nor had I gotten anything for pain, I was a minor so that wasnt an option anyway. I was calmly sitting there minding my own business when she comes in and announces this. Never having broke a bone before, I just go along with it and the needle is to be injected into my left thigh. Seemed like it shouldnt be a real big deal. I could not have been more incorrect about that decision, she had hit a nerve or bone, something that caused me to almost suck the mattress up in my butt cheeks her only response was to tell me to relax. I was always a very respectful kid with adults, this needle hurt so much that my respectful gland of my brain was overrode by my adolesant foul mouth response system to which I yelled out "Relax??!!! Isnt that what this f#$king shot is supposed to do is relax me? This f#$king hurts like hell!!!!" She could only respond with shock I think but basically suggested that the more I tensed up the harder it would be. But by the time she finished that statement, the needle was out, and she was leaving the room. Just for the record, that so called "calming" needle caused me to miss two days of school because I was unable to walk at all due to the pain generated in the muscle of that left thigh. So I went in with a broken arm and left with a severely tortured leg from a needle which led to the inability to walk. Everyone wonders why I had a phobia of needles after that.
The doctor came in and sedated me with local agents, mostly to fog my brain and completely numb my arm so he could set the break and cast it. This would be the first time I realize that I am immune to certain types of medications used to "trick" the CNS (Central Nervous System) masking the pain. When he began to set the bone, I could feel everything now, unlike before when they were splinting it. Now the arm was completely live and everything the doctor did felt like he was intentionally trying to cause me so much pain that he could make me pass out. I came close twice.
Back then it didnt make sense to me how I had no sensation for so many hours but after injections my body was suddenly active and felt everything. It was the exact opposite of what the doctor intended but they contributed it to the fact that I was watching him set the arm and I had possibly created that thought in my mind that it hurt rather than the fact that I actually was feeling the pain the way my body internally was projecting it. I still cringe at the memory of that feeling of pure pain from the needle in the leg and the setting of the arm and now knowing that the medications given to sedate me essentially were blocked by my ANS disorder through what seems to be a combination of both stress displacement and blood supply to the proper nerve cluster.
After the cast was secured, I walked aimlessly in circles in front of the automatic door. I only remember this because they kept asking me to walk away from the door and I did hear them but it just didnt register. The drugs were now taking on the proper affects to my body long after the procedure was done.
I followed that bone break with a collar bone fracture a few years later, broke same wrist bones again, this time however while landing on my right elbow, I stress cracked both of them, completely wiped out right knee, all ligaments, cartilidge and fractured a bone under knee cap, fractured ankle, fractured foot twice, separation of sternum, split that and forced ribs to pull away, achilles both sides, also plantar fasciitis one foot, broke a few toes and I think that about covers all of them. Turns out that the Dysautonomia is a calcium depleating syndrome as well, so it leaves your bones weak. Of course when I broke bones all throughout high school I was "accident prone" per the doctor, not the possibility of anything underlying. No of course not, let me find it out 30 years later, much appreciated.
As this syndrome is a journey forward, its also a journey back to see how it crossed my lifes path and was overlooked. I understand that even the diagnosis in todays medical field of technology is one that most doctors steer away from due to the complexity of the syndrome, but the internet is the source that allows most people to go to their doctor with specific details to better assist the doctor in helping them help you/me. Thats my new goal now, I have the on going knowledge and research into this syndrome, so its up to me to keep my doctor informed on what my needs are now.
There arent any miracle drugs out there that can cure all of the symptoms without causing some other kind of side effect that is sometimes worse then what you started with. My frustration lies with the doctors that say "you can't feel that way" or "thats not a usual side effect for that medicine, I doubt its causing that problem". I know my body EXTREMELY well. A person with OCD (Obsessive Compulsive Disorder) ((another known and highly tracked side effect of the syndrome by the way)) makes mental notes of all things in their lives that hinder A to B conclusions. So when it comes to medical, ANYTHING out of the ordinary is immediately documented and if its super serious, the doctor is contacted ASAP. Thats when I usually get some BS (Male Cow Poop) about how the meds didnt have sufficient time to build up in my system yada yada yada. Well guess what doc? With this diagnosis, do you have time to apologize for the numerous negative and unsupportive comments you made to me over the past year +? Or perhaps explain why you, the SPECIALIST, missed this and my regular family doctor went over your head to order all the tests that ended up bringing her towards this conclusion? Welcome to Floridas healthcare system. They are so used to dealing with retirement aged individuals that middle aged people like myself must be faking our symptoms because they have to actually work and think about all possiblilities of why this is happening.
Another post completed, time to relax and consider the next subject to be covered. Thanks for reading.
Friday, July 15, 2011
Looking Back With an Educated View
I have extensively researched the origin of this syndrome and it appears that there are some opinions by medical experts but no real definative explanation as to how, where, why or when. So I am left to fill in the blanks based on cirmcumstance. I have had to dig deep for this, going back into the mental archives, some of which seem to now be lost. Another side effect of the syndrome is memory loss, both short term and in some cases, event loss or familiar person, place or things that once were very much a part of your life. I have recently endured this issue with people that start talking to me and based on my blank look, they realize that I have no idea who they are and they begin to tell me that we've known each other the past 6 to 8 years yet I have not one single memory of them whatsoever, not even facial recognition. This is a scary reality for someone with OCD tendency that also had the ability to recall not only verbatim conversations from whenever/whereever, but could also describe right down to the clothing everyone was wearing the day of the conversation. Its like being someone entirely different but the only problem is, you are the only one who doesnt get it. I just dont see these people as anyone I once knew so they are strangers, but after they give details of the past, I feel bad that I still dont know them or recognize them. How would you like to have the entire memory of your childs birth erased from your memory? The only evidence I have of my youngest daughters birth is a tremendous amount of pictures taken that tell the story to where I can almost trick my mind to believe I remember every single moment. My sons birth, 2004, I have detailed memory but have lost the crucial information such as birth weight, length and time. Other than that, all else seems to be in order.
So I see the most common remark in regards to possibility is trauma to the nerves and or neck/spine area. Well I could easily contribute numerous events that could have happened as a child from infant on up. I managed a fall from my play pen at 6 months which was always the talk of every family function for years. How I constructed items in a ladder form and pulled myself up and over, landing on my head. I am not sure if the time line is accurate based on everyones account of the situation, not doubting I achieved this, just doubting at 6 months this was possible. I have raised two children now passed the 6 month mark and I dont think either one of them could achieve falling off a throw rug onto tile never mind climbing out of a play pen. Yes I was a determined little soul but not an up and coming super hero.
I have childhood memories of multiple falls down stairs. I still to this day have an uneasy feeling as I come to the top of a staircase preparing to go down. If I stand long enough there, I can actually create a dizzy spell and I distinctly remember on one occassion as a child, having that exact situation happen and I still attempted to walk down, this led to a substancial fall down multiple stairs to the landing below. The homes built in the late 20's were real wood and they hadnt heard of a product called "padding" used under the stair carpet so falling down head over heals was a memorable and painful experience. This could easily have been the beginning of where all of this started, I might have inadvertently damaged a nerve cluster which with the days medical equipment available, late 70's technology, it would have been overlooked anyway had I been taken to the hospital. The mentality in those days basically led to a few questions that if successfully answered, you were told to walk it off. A trip to the ER was almost taboo and if the neighbors heard about it, I guess it was a huge deal. Not the case today. Kids take a substantial fall, right to the ER for the necessary tests to assure they are ok. No guess work for me when it comes to my kids!!
The secondary part of my findings is the presence of JHS (Joint Hypermobility Syndrome). This is also known as "double joints" which as a kid, was more of a showcase to entertain and disgust people that would watch me bend my arms, legs or fingers in abnormal directions. My grandmother had often talked about the first time my shoulder dislocated and that it became more frequent, well of course as time went on, by the end of first grade, I was able to dislocate my right shoulder almost on command. Another add on to my shocking display of oddities and side show. We were told in gym to bend over and touch our toes which I decided to take to that next level, I calmly put my palms flat on the mat while bent over as some of the kids struggled just to tough their ankles. For added fun I lifted all my fingers off the mat leaving just the base of my palms on the mat which over extended my wrists. This would always draw attention to me and many times the teacher would demand I stand right up and not participate just for fear I would hurt something. The fact that I could reach behind my back, with my head perfectly straight, and creap my hand up until I was touching the back of my head was also a show stopper. I would do this with both arms and kids would take turns forcing my arms as far as they would go to see if they could cause me pain, this never happened. Again, back then all for show and tell, now with research, its become an eye opening learning experience of how this may relate to my Dysautonomia.
Its amazing how you take things that seem so trivial in your life and given the right direction, they now become essential in completing the reason why you are where you are today. As an adult now, I still have more than normal joint extension, it was brought to my attention at PT (Physical Therapy) but I lack the flexible muscle response I had as a child that allowed me the ability to move without pain. Now the over extensions cause me extensive discomfort and pain, with a very audible "cracking/popping" noise that is disturbing to anyone close by that hears it. The comment "Sucks to get old" is the under statement of the year but its not properly presented. "Sucks getting old with medical issues that cripple you". Thats what truly is the problem with gettting old. If someone had told me at 44 I'd be fighting my body for survival and find myself unable to leave the house at times due to lack of energy or just such extreme discomfort that walking was not an option, I would have laughed in their face. I'm not laughing anymore, this is the real deal and when every step feels like someone is sticking needles between your toes with extreme force, while your struggling for balance, fighting nausea from the spins and dealing with daily chest pains, this reality isnt going to take a break and leave me alone. This is a fight to the death I am afraid, but I am going to do it with as much a positive outlook as I can and try very hard to help others get early detection so that they can prevent it from becoming progressive like mine. I am also involved with St. Judes Childrens Hospital, Partners in Hope. This is something near and dear to me. Once I am financially stable again, I also have interest in Project LadyBug and Tomorrows Childrens Fund. Unlike St. Judes which is based in TN, the other two are NJ based charities which I always like to keep my roots back home in NJ. Will keep you posted when I expand to the other two charities. Again, thanks for reading.
So I see the most common remark in regards to possibility is trauma to the nerves and or neck/spine area. Well I could easily contribute numerous events that could have happened as a child from infant on up. I managed a fall from my play pen at 6 months which was always the talk of every family function for years. How I constructed items in a ladder form and pulled myself up and over, landing on my head. I am not sure if the time line is accurate based on everyones account of the situation, not doubting I achieved this, just doubting at 6 months this was possible. I have raised two children now passed the 6 month mark and I dont think either one of them could achieve falling off a throw rug onto tile never mind climbing out of a play pen. Yes I was a determined little soul but not an up and coming super hero.
I have childhood memories of multiple falls down stairs. I still to this day have an uneasy feeling as I come to the top of a staircase preparing to go down. If I stand long enough there, I can actually create a dizzy spell and I distinctly remember on one occassion as a child, having that exact situation happen and I still attempted to walk down, this led to a substancial fall down multiple stairs to the landing below. The homes built in the late 20's were real wood and they hadnt heard of a product called "padding" used under the stair carpet so falling down head over heals was a memorable and painful experience. This could easily have been the beginning of where all of this started, I might have inadvertently damaged a nerve cluster which with the days medical equipment available, late 70's technology, it would have been overlooked anyway had I been taken to the hospital. The mentality in those days basically led to a few questions that if successfully answered, you were told to walk it off. A trip to the ER was almost taboo and if the neighbors heard about it, I guess it was a huge deal. Not the case today. Kids take a substantial fall, right to the ER for the necessary tests to assure they are ok. No guess work for me when it comes to my kids!!
The secondary part of my findings is the presence of JHS (Joint Hypermobility Syndrome). This is also known as "double joints" which as a kid, was more of a showcase to entertain and disgust people that would watch me bend my arms, legs or fingers in abnormal directions. My grandmother had often talked about the first time my shoulder dislocated and that it became more frequent, well of course as time went on, by the end of first grade, I was able to dislocate my right shoulder almost on command. Another add on to my shocking display of oddities and side show. We were told in gym to bend over and touch our toes which I decided to take to that next level, I calmly put my palms flat on the mat while bent over as some of the kids struggled just to tough their ankles. For added fun I lifted all my fingers off the mat leaving just the base of my palms on the mat which over extended my wrists. This would always draw attention to me and many times the teacher would demand I stand right up and not participate just for fear I would hurt something. The fact that I could reach behind my back, with my head perfectly straight, and creap my hand up until I was touching the back of my head was also a show stopper. I would do this with both arms and kids would take turns forcing my arms as far as they would go to see if they could cause me pain, this never happened. Again, back then all for show and tell, now with research, its become an eye opening learning experience of how this may relate to my Dysautonomia.
Its amazing how you take things that seem so trivial in your life and given the right direction, they now become essential in completing the reason why you are where you are today. As an adult now, I still have more than normal joint extension, it was brought to my attention at PT (Physical Therapy) but I lack the flexible muscle response I had as a child that allowed me the ability to move without pain. Now the over extensions cause me extensive discomfort and pain, with a very audible "cracking/popping" noise that is disturbing to anyone close by that hears it. The comment "Sucks to get old" is the under statement of the year but its not properly presented. "Sucks getting old with medical issues that cripple you". Thats what truly is the problem with gettting old. If someone had told me at 44 I'd be fighting my body for survival and find myself unable to leave the house at times due to lack of energy or just such extreme discomfort that walking was not an option, I would have laughed in their face. I'm not laughing anymore, this is the real deal and when every step feels like someone is sticking needles between your toes with extreme force, while your struggling for balance, fighting nausea from the spins and dealing with daily chest pains, this reality isnt going to take a break and leave me alone. This is a fight to the death I am afraid, but I am going to do it with as much a positive outlook as I can and try very hard to help others get early detection so that they can prevent it from becoming progressive like mine. I am also involved with St. Judes Childrens Hospital, Partners in Hope. This is something near and dear to me. Once I am financially stable again, I also have interest in Project LadyBug and Tomorrows Childrens Fund. Unlike St. Judes which is based in TN, the other two are NJ based charities which I always like to keep my roots back home in NJ. Will keep you posted when I expand to the other two charities. Again, thanks for reading.
Introduction
I'm not exactly the "Blogging" type however, I find myself in an unusual situation in my life that I feel a certain need to express "thoughts" so I can not only help myself deal with my current medical standing but perhaps someday help others understand early symptoms so they dont have to travel the hard road I have to find a diagnosis.
For me, the journey started in 2001. While minding my own business, discussing an automotive situation with a customer, I suddenly had severe chest pain, which also led to a very pronounced pounding that I could feel very evidently. I had trouble focusing on the conversation, lost track of where I had left off and apparently had looked rather ill from a skin color perspective because the customer immediately asked if he needed to call 911. Hard to believe that I went from totally normal to knocking on deaths door in a matter of sixty seconds. I convinced the customer that it had to be something I ate and that I would appreciate it if I could call him back shortly to discuss the matter. He agreed, left my office and I headed right for the front of our store and grabbed the Bayer aspirin. Wasnt exactly my favorite thing in the world to chew up an aspirin, but I vaguely remembered someone doing it in a commercial and it supposedly saved his live. So I did it and rather than walking 100 feet to the fire station behind our repair shop, I jumped into my car and headed right for the ER. Dumb I know, but its a macho guy thing. If you are going to have a heart attack, bragging rights that you drove yourself to the ER seemed the better choice. LOL not really the case, I just got in the car and I couldnt really tell you what I was thinking, I just drove to the hospital.
They ran a bunch of tests, I had some tests run by a gastroenterologist as well and after all said and done, released 48 hours later, no results found. I returned a week later and had my first heart catherization done, quite the unpleasent experience I might add. Turns out the medication they used for it did not have any effects on me so I was completely maxed out on the anxiety scale to the point that the cardiologist had to explain to me in harsh tone that he had my fermoral artery open and if I continued to jump around I was going to drain out all over the OR. I managed to somehow stay a bit calmer until he said "uh oh, record that". That was then followed by, "everythings fine, dont panic, EKG STAT, no big deal here, GET HIS WIFE HERE NOW, just remain calm". Oh yea, I was as calm as a gazelle with a pack of cheetah's chasing it.
My wife was brought in to give me the news that the doctor had accidently knocked my heart out of sync, so when the telemetry was hooked up, its looked like a 9.6 earthquake rather than an EKG. I kept thinking, did he say to remain calm? I managed to ask just one question as he stood there studying my heart rate, I said "Doc, is this a bad thing?" He responded with a slight chuckle in his voice, "well if you were 65 or older, we wouldnt be having this conversation, you'd be dead, it should go back into rythum". That made me feel so much better. It did manage to calm back to normal sinus rythum and all was back to the same result, he didnt find anything. So I was leaving the hospital, yet again, without a diagnosis.
This started January 2001 and here we are now in July 2011 I am now finally getting a diagnosis of why nothing was ever found. Now theres alot of missing medical disasters in between that I will slowly post. I have had just about every test known to man and have had failures/complications with my kidneys, gastro, cardio, neuro, pulmonary systems. My doctor wrote down "autonomic disorder" on a piece of paper at my last visit and after a long two weeks of cross referencing all the complications, the adverse issues with medications, the crazy symptoms that no one had answers for, the final out come, DYSAUTONOMIA. I am relieved that as I read all of the information in regards to this nasty central nervous system syndrome, it was like reading my own medical journal but I still have a long way to go. I now have to confirm whether or not I also suffer from POTS (Postural Orthostatic Tachycardia Syndrome) and also EDS (Ehlers-Danlos Syndrome) both of which directly relate to my symtoms exactly to a tee. I can't believe something that I always found amusing from my childhood is a red flag for EDS. I had what was commonly called, double joints. I could flex arms, legs, shoulders, fingers, ankles to an almost disturbing degree. This is called JHS (Joint Hypermobility Syndrome) which now I am finding out is a bad thing in my case. Who knew?
So in closing, now that I have bored the tears out of anyone reading, this post is just a taste of whats to come. I expect that I will be as medically correct as I can and I will try to include every single ailment that I suffered that is related to this ANS (Autonomic Nervous System) and hopefully it will not only help me to get it off my chest but someday, someone reading this that feels as I once did, where not only your spouse doubts you, but doctors start thinking you need a mental evaluation. I had three mental evaluations, its not pyschosymatic, this is the real deal. Oh, and for that asshole doctor that felt that I was over dramatic in regards to my pain level complaints, Fibromyalgia and Peripheral Neourapathy are two of my other symptoms, the PN has been medically proven by an EGD so you can kiss my big white butt. When I say I am in F'ing pain dude, you better be paying attention and not dictating that I am overdramatizing the issue.
Well its time for me to take my medications and try to go to sleep. Not fond of the insomnia but it comes with the territory. Its currently 02:13am Eastern time so I attempt to whind down for the day. Thanks for reading.
For me, the journey started in 2001. While minding my own business, discussing an automotive situation with a customer, I suddenly had severe chest pain, which also led to a very pronounced pounding that I could feel very evidently. I had trouble focusing on the conversation, lost track of where I had left off and apparently had looked rather ill from a skin color perspective because the customer immediately asked if he needed to call 911. Hard to believe that I went from totally normal to knocking on deaths door in a matter of sixty seconds. I convinced the customer that it had to be something I ate and that I would appreciate it if I could call him back shortly to discuss the matter. He agreed, left my office and I headed right for the front of our store and grabbed the Bayer aspirin. Wasnt exactly my favorite thing in the world to chew up an aspirin, but I vaguely remembered someone doing it in a commercial and it supposedly saved his live. So I did it and rather than walking 100 feet to the fire station behind our repair shop, I jumped into my car and headed right for the ER. Dumb I know, but its a macho guy thing. If you are going to have a heart attack, bragging rights that you drove yourself to the ER seemed the better choice. LOL not really the case, I just got in the car and I couldnt really tell you what I was thinking, I just drove to the hospital.
They ran a bunch of tests, I had some tests run by a gastroenterologist as well and after all said and done, released 48 hours later, no results found. I returned a week later and had my first heart catherization done, quite the unpleasent experience I might add. Turns out the medication they used for it did not have any effects on me so I was completely maxed out on the anxiety scale to the point that the cardiologist had to explain to me in harsh tone that he had my fermoral artery open and if I continued to jump around I was going to drain out all over the OR. I managed to somehow stay a bit calmer until he said "uh oh, record that". That was then followed by, "everythings fine, dont panic, EKG STAT, no big deal here, GET HIS WIFE HERE NOW, just remain calm". Oh yea, I was as calm as a gazelle with a pack of cheetah's chasing it.
My wife was brought in to give me the news that the doctor had accidently knocked my heart out of sync, so when the telemetry was hooked up, its looked like a 9.6 earthquake rather than an EKG. I kept thinking, did he say to remain calm? I managed to ask just one question as he stood there studying my heart rate, I said "Doc, is this a bad thing?" He responded with a slight chuckle in his voice, "well if you were 65 or older, we wouldnt be having this conversation, you'd be dead, it should go back into rythum". That made me feel so much better. It did manage to calm back to normal sinus rythum and all was back to the same result, he didnt find anything. So I was leaving the hospital, yet again, without a diagnosis.
This started January 2001 and here we are now in July 2011 I am now finally getting a diagnosis of why nothing was ever found. Now theres alot of missing medical disasters in between that I will slowly post. I have had just about every test known to man and have had failures/complications with my kidneys, gastro, cardio, neuro, pulmonary systems. My doctor wrote down "autonomic disorder" on a piece of paper at my last visit and after a long two weeks of cross referencing all the complications, the adverse issues with medications, the crazy symptoms that no one had answers for, the final out come, DYSAUTONOMIA. I am relieved that as I read all of the information in regards to this nasty central nervous system syndrome, it was like reading my own medical journal but I still have a long way to go. I now have to confirm whether or not I also suffer from POTS (Postural Orthostatic Tachycardia Syndrome) and also EDS (Ehlers-Danlos Syndrome) both of which directly relate to my symtoms exactly to a tee. I can't believe something that I always found amusing from my childhood is a red flag for EDS. I had what was commonly called, double joints. I could flex arms, legs, shoulders, fingers, ankles to an almost disturbing degree. This is called JHS (Joint Hypermobility Syndrome) which now I am finding out is a bad thing in my case. Who knew?
So in closing, now that I have bored the tears out of anyone reading, this post is just a taste of whats to come. I expect that I will be as medically correct as I can and I will try to include every single ailment that I suffered that is related to this ANS (Autonomic Nervous System) and hopefully it will not only help me to get it off my chest but someday, someone reading this that feels as I once did, where not only your spouse doubts you, but doctors start thinking you need a mental evaluation. I had three mental evaluations, its not pyschosymatic, this is the real deal. Oh, and for that asshole doctor that felt that I was over dramatic in regards to my pain level complaints, Fibromyalgia and Peripheral Neourapathy are two of my other symptoms, the PN has been medically proven by an EGD so you can kiss my big white butt. When I say I am in F'ing pain dude, you better be paying attention and not dictating that I am overdramatizing the issue.
Well its time for me to take my medications and try to go to sleep. Not fond of the insomnia but it comes with the territory. Its currently 02:13am Eastern time so I attempt to whind down for the day. Thanks for reading.
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