Perhaps A Breakthrough?

Anybody who suffers any kind of syndrome no matter what the name is or the effects of the ailment, its the words "not curable" that resound mostly in our head. Todays technology just seems to be so far advanced that it seems almost mind boggling that there isnt a solution to all problems in the medical field. For someone who suffers from ANS aka Dysautonomia, this is the mother of all nervous system syndromes due to the complexity of origination, containment and long term prognosis. Once you become progressive, lucky me to have gotten to that level, the doctors have a much harder time trying to rectify all the abnormal issues that arise in a normal day, week, month etc... When you suffer from Fibromyalgia, Parkinsons, Chronic Fatigue, Neorapathy with the list going on and on, its unimaginable that so much is actually wrong with you all at once and containment is the goal and only goal. I'm not a fan of the "symptom of the day" so to speak, I'd rather know that everyday I wake up, there is a constant issue where doctors can focus their efforts and make this go away. Sadly, this in not the case with Dysautonomia, it loves to mimic all of the nasty syndromes even borderline on the edge of MS given the right platform and so thus creating a much more complicated diagnosis because most doctors would rather stumble upon something obvious like Fibromyalgia, treat it and perhaps you have a few halfway decent days a month. So you think "Oh great, progress" where in fact you have fallen short of what is actually needed to correct the other days of the month that take on symptoms other then the FM.
For me at this point and time, I take a series of 26 pills a day, morning and evening just to have daily function and keep up the lifestyle of a mid 40's single man with young children who need their dad. Its a proven fact that if I dont pace myself, I can easily burn myself out day one of their three day stay and become a couch potato ruining their chances of having fun doing other events. So I try so hard to make sure I see the early signs of fatigue and try to shut down before I am forced to shut down by my own body. Its still a learning curve because I have always been the type of Aries male that doesnt believe the word "can't" exists so when I do something one day, I have to "one up" it the next day and so on so forth. This is fine of you are practicing sports to achieve that next level, I know this from hours and hours of playing pool however, when you have a body that dictates where, when and how, your choice of doing that is very limited and there is no such thing as being a hero.
When I began to have some really serious symptoms, the swelling of my throat being probably one of the most dangerous, followed by the "crushing diaphram", my doctor obviously became more and more concerned that I was seriously sliding downhill and she couldnt help me. I could tell for the first time she was scared for me, this was obvious when she was looking at the floor rather than in my eyes when I said how serious a problem is this. Her body language and dimeanor said it all which led me to my next question, will I see my baby girl turn two? It wasnt a question that got an immediate yes, it was a lead into the fact that other testing was needed asap. So I read between the lines and prepared for the worst so that I was ready in case. Once a plan was in place I could combat this more comfortably knowing that if I gave it 1000% and still lost, certain things were taken care of and in times of sorrow, this would be indeed a godsend. I admit that sitting down with a funeral director was a bit uncomfortable but having done some work for funeral homes in the past, I had been able to keep it together as I toured the grounds for a plot, picked out a casket and gave my wishes to the funeral home of choice. As it was on one hand a sign that I was losing, it was also a victory because I could no focus completely on finding my own remedy or cure. I have spent hours upon hours online researching all the different facets of this syndrome and of course having all the worst possible symptoms of it, prognosis is always the same, unknown outcome, sudden death syndrome with no real cure to be found, and when I say cure, I mean a means of containment, miracle drug (s), surgery, therapy anything that would extend quality of life. Its frustrating to be up against such a large opposition but I was determined I had to find something.
Somewhere in between all of this heartache and misery, along with a nasty divorce in its final stages as if I didnt have enough going on, I slipped away one evening to just get out. My first time out in a social setting without my children and not over to a friends house where I had been numerous times. Nope, this time I went to a club to just hear some music, maybe talk to some new people or not, I could easily sit alone and just absorb the life away from always looking for a miracle. So I entered the club, sat down furthest from everyone in the place and ordered my diet Coke. I was in there about 40 seconds when I realized, I really didnt want to be there. I had made an error. As much as I enjoyed the music, I just didnt feel comfortable being there by myself nor did I really feel like being social. A familiar face however got me to chat a tiny bit, the waitress rememered me from when I was there 7 or so months ago, I tip really well having been a bartender at one time in my life I know what is most important to always get great service whenever you do a repeat somewhere. So she remembered me after all those months and even though I was way off on her name, she still smiled and asked the usual BS questions. I had handed her a 20 and she realized she had to get more change from the bar so she walked away. When she returned with the change and was counting it out we talked a tiny bit, chit chat and I gave her a tip my usual overboard denomination and began to lift my drink. I suddenly froze and apparently my facial expression was one that she felt compelled to ask if everything was ok. I was staring at a girl who was a good 25 feet away and I literally was speachless at how beautiful she was at that distance. I stuttered when asking the waitress who she was and she just looked at her and said I dont even know her, never seen her in here before. Before I could say another word, the waitress asked if I wanted her to go and say something to this girl who was now at the bar. I told her no, I literally was tongue tied and just told her that a girl like that I wouldnt even know how to even start a conversation she was that amazing. Well the waitress bee lined right to her and suddenly this absolute goddess was looking over my way and I could only imagine that she was just thinking to herself, "what a loser, wont even come over and introduce himself". I dont think I could have made my legs walk, I just could not believe how amazingly beautiful she was.
Well whatever the waitress said to her, to this day still unknown, this girl made her way right over to me and sat down right next to me. I almost had a heartattack. At 25 feet she was beautiful, right next to me, she was a STUNNING GODDESS. All I could say rather than "hey, my name is, whats yours?" I blurted out "you are the most beautiful girl I have ever seen". That was the ice breaker. Her smile and comment about how I made her blush started to make me feel comfortable and for the next 6 hours, we never took eyes off of each other. I could not stop staring into her eyes and telling her how amazing she was, she truly was breathtaking and I just knew I had to somehow make this night the best ever because I really felt due to where she lived, (hour and half away) this could be the first and last time we met. She was reluctant about exchanging numbers, even though I wasnt drinking thus not making an ass out of myself, she had been badly burned in a relationship two months prior and had no intentions of really meeting anyone new. She told me straight out that caution was going to be very high and I felt the same after 14 years with the same woman getting a text that the marriage is over, you do kind of lose faith in the opposite sex, and trust is gained not assumed.
So as to not be to overly forward we both decided to exchange email addresses and to be honest, even after 6 amazing hours with her of non stop talking and laughter, I was still skeptacle that she might just give me bogus info to be safe seeing as she was there pretty much by accident and intended to go back to the other coast. I am the optomist however, the side I much prefer, I decided to email her as soon as I got home and was curious to see if she'd respond. Imagine how thrilled I was when I got a response the next day from her, mid afternoon. I realized that there was potential here to perhaps see her again and I knew that a response meant she was slightly interested. So knowing that my children were with me until Sunday morning I knew to keep the emails very light so I didnt come out of my skin wanting to go over to see her, I wont sacrafice my time with my children for anyone but I didnt need the extra stress of her wanting me to be there and I had to say no.
I told her I was free Sunday evening and she didnt jump at the chance to meet so I figured here comes the caution she warned me about, I guess I'll take it back a notch. Later Sunday evening however, she did ask me if I could meet her by her home at a place she felt comfortable around noon. I almost jumped through the computer. I was ready to rock! I got the address of the location, mapquested, punched it into GPS on my phone and left the next morning to make the hour and half drive to see her. In my excitement, I forgot the printed Mapquest directions and as I approached the other coast, my phone GPS lost signal so I began to almost hyperventilate. How could I leave the directions behind. Luckily I remembered the address and actually texted a friend of mine to Mapquest it and text me the info. He did so and I made it on time. She was already there and she looked even more spectacular then she did the previous time I saw her. Much to her surprise, I showed up. Why in Gods name wouldnt I??? Apparently, most guys would have tried to make her come to them which I didnt even try to do and without a single sign of negativity, I shot across the state to see her, this won me some serious brownie points.
This began a three day multiple hour visits that were more amazing each time. We would spend 6 to 8 hours just talking, laughing, learning about each other never a single awkward silence, I pinched myself at one point which she kinda thought was odd but I explained that I wanted to make sure I was truly awake and it wasnt a fantasy. I managed to say all the right things, nothing stupid, and oddly enough, I was falling for her with no sign of return. She was indeed infectious. I knew that after I left her Wednesday evening I wouldnt see her until the following Monday because I was with my kids again so it was extremely hard to say goodbye that night, for both of us. I left with a smile ear to ear, I was on cloud 9, she was into me and all eyes were on us because she was the super hottie and I was that guy that everyone goes, "how did he end up with her?"
As I began to miss her Thursday and Friday, I also noticed something rather odd. My symptoms were relentless, I was worse then I had ever been. I could barely drag myself off the couch and I contributed this to all the travel back and forth. I increased some of the inflammatory drugs due to excessive pain and aches but I had never felt this awful. I knew I had pushed it too far. But with this tribulation, I also recalled that when I was with her, my symptoms, even the ones that are always there day to day, the constant naggers, were almost undetectable or for the most part extremely ignored by my conscious self. I realized that I had the ability to do the "mind over matter" when it came to pain and being with her. It was something I began to actually put alot of thought into and of course the fact that I really felt I was falling in love with her only after knowing her for 4 days technically. So I emailed her about my health demise, I was honest about my long term prognosis and she didnt run away, you have to respect and idolize a woman like that who is willing to fight the fight with you knowing it could have a poor outcome. Thats a sweet person right there, forget her beauty, just take in the fact that she knew ALL my medical complications and insisted on seeing me the next day. Mad respect for a girl like that.
So for shits and giggles, I decided to just Google the perception that I had fallen in love, was there a possibility of chemical release that could actually aid in the prevention and or control of ANS or other affiliated syndromes? I expected a humorous outcome from some Arab based site or some other weird situation but when published accounts of how the body reacts to "love, sensuality, sexual desire, physical attraction" I almost fell of my chair. It wasnt in my head at all, well I mean as a fictional thought pattern anyway, it was a proven medical fact on numerous sites that being in this kind of euphoria actually releases the chemicals in the body/brain that aid in keeping the ANS under control. Could it be that meeting this girl basically on a pure coincedence, (neither one of us were supposed to be in the first club we met, both had plans that fell through with other people and ended up there) she could actually hold the key to a successful containment of ANS? Well let me tell you, when I saw her the following Monday and my symptoms deminshed when I was with her and everyday after that until we were separated and I was alone with the kids again, thus my body fell into an extreme symptomatic situation, it had become clear that for me, these chemicals were indeed essential for my body to remain even. I needed to get with my dr asap. With the holiday of course she is out of town until my next appt but let me tell you how excited I am to know that this girl may have unlocked the key to my successful future in "remission" so to speak. I thanked her over and over of course which she can't understand how shes responsible, kind of blows her mind but nevertheless, after months and months of online research, the answer was actually right in reach with this girl. I had to fall in love though, lol no issues there, I am loving that especially with her!!
So in closing, rather than saying exactly what I found, I want to get with my doctor to see if what I need is available in a medicinal way. I will share the second I have it in my hands that is for sure. As for now, I am letting love led the way. Thanks for reading

Still In Limbo

Once again I find myself in that same dilemma of knowing but not knowing whats next when it comes to my medical issues. After testing positive for the HLA-B27 and a positive ANA profile, you would think that all would be cut and dry, move towards diagnosis and then towards the probable course of treatment. Not so fast! It appears that with the complications of having an ANS disorder lurking and too many possitive signs of a high number EDS disorder, this has even cause the new doctor to second guess his next move. Knowing how I can test positive for something in the morning and negative in the evening has him quite scarred and for good reason, I have given him a spreadsheet of my bloodwork over the last ten years all catagorized for easy viewing, this made it very easy for him to realize that again, is he dealing with a true AS situation, or is it a false positive HLA-B27 which will lead to the, why would it show a genetic mutation in the first place? I can not believe that I am now faced with yet morei  iobsticles and fewer answers as I go. The only person that made any sense at all was the Optometrist who explained that the ANS disorder was causing severe focus issues with my eyes and the only way he could see a possible solution was to fit me with glasses. Its a weak prescription at best and progressive lenses which someone having balance issues and nausea should really be prepared for many uncomfortable situations to come up just by merely turning your head too fast. I think I am finally getting used to having them on 24/7 and I have to admit, it has kept my vision more accurate on a daily basis rather than one day I can see the next I can't.
I find that the most draining of all the issues weighs heavily on whether I do too much physically or I get into a heated discussion with someone. This causes major muscle failure and uncontrollable spazms thoughout the body which bypasses any of them medication that has been administered to prevent those symptoms. It literally drains me to the point of exhaustion and its a feeling I truly hate with a passion. Probably the most helpless feeling in the world that you know your body is letting you down when your mind is wanting to go do something. I have read up on this and most of what I find leads back towards ME/CFS which is quite possible with any ANS issues present. Of course its one of the most difficult to diagnose because it seems most doctors want to believe there is something else wrong with you rather than the fact that its just possible that severe fatigue is truly the culprit.
I found that steriods did help with the joint and bone pain to some degree and as I am now off the dose pack for several days I am beginning to notice the return of the nagging pain that was severe in my leg bones especially and hip joints. I hope that by the doctor giving me that dose pack and it having some benefit, it leads him to some conclusion of what may be next. I dont take pain medication with the exception of Naproxen, (Turbo Aleve) so unlike most of my fellow sufferers who can turn to the percocet, or oxys for relief, that world doesnt exist for me. I unfortunately have to grin and bear it. Not sure how much longer I can endure that sort of punishment but for now, I just dont feel adding more pills to my regiment of ridiculous medication intake is in the cards for me at the moment. Besides, having two small children to attend to half the week which requires alot of driving, I dont want anything that would hinder my ability to drive in any way. My exwifes attorney is just itching for another reason to be a pain in the ass, so I am sure that using my medications against me would be her next planned attack. I have no respect for that C ending in T. I am certainly not done with her by any means, I'll let her have her glorydays with me thinking shes winning in court etc and then "surprise bitch" bet you didnt see that coming. When you live in a smaller community, its wise to make sure that the person you are going after doesnt do alot of checking into your past as you are doing to his. It could become rather embarrassing. Touche'
So at present time, I am still no further on the extreme fatigue, the burning under the skin, continued memory loss, the excessive shaking, in ability to use my hands at times to open things etc... I'm glad we have the diagnosis though! Hats and horns on that one. I didnt expect it to be overnight success but I guess I just figured that now that everyone was on the same page, it would be smoother. I'm not seeing smoother yet. I am however seeing the return of my narcolepsy. I love just slipping off to sleep and waking not even knowing I feel asleep in the first place. Its especially entertaining when at the computer sitting upright in the chair, fingers still on the keyboard. I think the cutback on amphetamines was good in a way, but I can see where its going to be bad for other areas. Damned if you do, damned if you dont.