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