I spent the better part of ten years telling people that things were not right with me and after tests were run and negative results were produced, of course on more than one occasion, I began to lose credibility. How many times can a person cry wolf you ask? Well historically, ANYONE who knew me, I'd have to have a limb falling off to even see a doctor in the first place so that was sign number one that perhaps I wasnt doing all this for attention. Sign number two, I am SEVERELY, DESPERATELY, OVERLY, ABOVE & BEYOND, terrified of needles, even getting a simple glucose test from a finger prick you'd swear they were asking to take my spleen while I was lying awake unmedicated. So again, every hospital visit and a large majority of my doctor visits involved blood draws, injections, IV's, operations, even heart catherizations, who the f@#k fakes symptoms to have two of those done????? So as I sit here reading over ten years of medical history, comparing all of my outragagous bloodwork results and reviewing doctors comments, I am saddened to see that the one person to whom I thought was my best friend, my wife/soon to be exwife, had manipulated the doctors to believe that it was indeed either psychosomatic, depression/anxiety or some other deep rooted psychological episode that caused physical distress. Each time she had done this, the doctors were swayed from a course of medical study and the focus was drawn away to a complete dead end, meeting with therapists. I hadnt realized until reading back into these medical files and notes that I was actually unintentionally sabatoged by the very person who was seeking the answers along with me to my suspicious and extremely random medical issues. I was so close to possibly being diagnosed at one point in 2004 but she managed to sidetrack the doctor and the test that he was going to suggest and proceed with, the very one that I failed in 2011 that confirmed NCS was detoured for a visit with a psychotherapist. I never really focused on the timeline until now as I read all of this and as I face the final stages of our divorce proceedings, I can't help but wonder what could have been if I had been successfully diagnosed back then.
My issues in our marriage, ALL of them, each and every complaint my wife had, all answered when I was diagnosed with ANS, it was as if a huge burden was lifted from my shoulders because I just didnt have any answers for her. I knew I wasnt doing my share to make things right but I couldnt explain what it was that was causing it to go so drastically wrong either. To hear over and over "its in your mind" wasnt helping the situation, I refused to believe it, I knew something was drastically wrong but I hit roadblock after roadblock. The divorce introduction was the final blow, my body just attacked me and its said to say that the divorce was actually what led to my being diagnosed, who wants to find out that way? Now as I sit down talking to my soon to be ex about all the issues that are now explainable, she has regrets of what she did to end our marriage, not apologetic, just regrets and extreme emotion. All I can really say is "do you believe me now?" Its not an "I told you so" moment, no one is victorious here, I lost my wife/friend/marriage and she lost the ability to be the victim in this divorce which I explained all along even long before the diagnosis, the kids are the only victims. All I wanted was for someone to figure out what was wrong with me and for the people around me who I thought loved me, to believe in me.
I face each new chapter of this syndrome alone now and I selectively share details with her that may pertain to our son who is soon to begin his journey of early diagnosis in the ANS world. My new battles with Autoimmune disease has been a much more difficult transformation. Between the already disabling complications of the ANS syndrome I now have to contend with the unknown Autoimmune disorder. I am awaiting the results of the blood tests from my three days of blood draws and its said to think that I am praying for Lupus, but over all with the profile that I failed thus far, Lupus will be the best case scenario.
I understand alot more about ANS then most people and oddly enough, even some medical professionals are confused by it and I have to offer my knowledge to them as well. When you are plagued with something you almost have to become an expert, its the only true way you can ensure that everything your lifestyle offers will manage to coexist with your medical limitations.
I have ordered my medical alert bracelets, just another step in accepting the enevitable reality that this isnt going away. Out of anyone in my family however, I am the only one who can truly handle it and remain focused on moving along whatever the outcome. I deal with things much differently than most and constantly making jokes about it and even references about coffin shopping rather than car shopping makes me laugh. I have a "come and get me attitude", I already made my peace with God so all is good there.
Its nice to go to my doctor now with new symptoms and have her undivided attention, its no longer viewed as "here we go again" its a whole new chapter of whats to come next. With new things happening everyday, I know I am supposed to keep a journal and all but the saying "Lifes too short" has suddenly become a reality and I just dont have the time anymore for what I feel are silly things that I may be able to recall when I see the doctor. I'd rather focus on my kids and how they are doing or what we will do next time I see them. My son knows somethings wrong with daddy, I can't hide my physical limitations from him anymore, I used to be able too but hes too smart so I just need to do the best I can and hope that I can keep it up a long time.
In closing I think its safe to say that anyone who feels that a spouse, loved one, family member isnt really hearing what you are saying when you indicate you are in pain and perhaps they are even suggesting you are over dramatizing it or inventing it, in your heart if you truly are symptomatic, share with them all of the blog entries that discuss the deterioration of relationships due to lack of TRUE support. I have come accross so many people that have these issues and not just people with severe issues like mine, others with a more simplistic diagnosis of just Fibromyalgia. ANS sufferers also have Fibro so we can relate to those days where we have just those symptoms and they should never be discounted. Chronic illness is something you can never discount or deny unless you have walked our shoes. Thank you for reading
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