Today, I'm feeling frantic and shaking.
I just got a letter from the VA in the mail AFTER calling to request a new doctor because the one I've had for several years isn't a very good listener and had added diagnoses that were incorrect. When I went to my hearing last January, I told the Judge in very plain language that this is a big concern of mine and one of the reasons I've been seeking a judgment of disability from them so that I can have different insurance and see doctors other than those at the VA.
Don't get me wrong, the VA has a LOT of good here in Ohio. They have been one of the VA's I've had contact with over the years that have been very responsive in other aspects and for that I'm very thankful. The issue I have is one that is a very heavy concern to me, it's this problem I have with misdiagnoses and which could result in my death or the deaths of others they may also misdiagnose.
I will try my very best to calmly explain to you since I feel like the polar opposite of calm at the moment. I will say recently I saw a Facebook post from someone named Amber Smith reference anxiety that has apparently gone viral and tons of people are either following or talking about this. This is something that may boost awareness of others for part of what I go through on a daily basis, and I'm appreciative of that, though I've been talking about that and other things for years and I have a following of a whopping 11 people LOL....... I don't care, I'm not really looking for "internet fame" or recognition of anything, this blog is for ME to vent and talk through the difficulties I have with the "system". If it brings any help or enlightenment to others, so much the better, but it's primarily for MY peace of mind. Anyway, if you have an interest in that whole anxiety viral thing, here's a link. Viral Anxiety FB post
So to explain why this is so upsetting to me, I should first explain, I got out of the service in 1997, I had seen a doctor prior to my release about some issues, and had been diagnosed with PTSD reference those issues. I went about my business and tried my best to be a good citizen for years and years, and when I had need of the VA, I contacted them to find that they'd decided to put a diagnosis of "depression" on my benefit claim. Now, I must make people understand, I don't think that depression is more or less of an issue than PTSD, it is VERY difficult and I feel for those that have depression, either clinical or other. What is upsetting to me is that this is a clear mis-diagnosis, and could result in me being treated in a way that is contradictory with my true diagnosis, OR completely wrong and result in my becoming dependent on medications used to treat someone that actually has that diagnosis. I have no desire to be a drug addict because I'm given medications for a medical/mental issue other than the ones I have, nor do I wish to cause an imbalance in my brain from mistreatment CAUSING me to develop depression, because of forcing brain changes from taking the wrong medication. I think you can see fairly clearly why a mis-diagnosis would be troubling to anyone. When I did receive my diagnosis in 1996 of PTSD, the Psychiatrist said to me, it seems as if you're depressed about this or that, and asked if I wanted anti depressants at that time, to which I replied, you know what, sometimes life SUCKS, and you get sad about it, that doesn't mean you're clinically depressed, that means you're SAD and if and when life changes, you'll be happy. A pill isn't going to fix what went wrong, only time does that, and I refused medication and I made certain he understood that in no way was I in need of medication for depression. I'd worry more about someone who was happy about crappy things happening than I would about someone that was sad when crap happened. I told that guy as much and it was the LAST time I went to see him, because I'll be damned if I become a statistic because some jackass wants to over-diagnose or over treat things and turn the world into addicts.
Well, today I got a letter from the VA stating that I should call them and schedule an appointment for diabetic retin imaging dated the 15th, AFTER I called and explained my concerns and reasons for requesting a change of doctor to the nurse at primary care, and telling her that when I first started seeing my DR. I clearly told them over 20 yrs ago when diagnosed with PCOD I was in the 99% stage of my disease, meaning that 99% of all those diagnosed with my severity, had developed diabetes, and that I remained in the 1% that did NOT develop it, and that yes I do take a medication NORMALLY given to those diagnosed with diabetes, but that PCOD is also a system wide endocrine disorder and also calls for similar treatment in order to control/aid digestion etc etc, but when tested for diabetes at the baseline level I routinely tested NEGATIVE. I had been fighting with her and her nurse ever since to make sure that it was not stated in my record as being a diabetic as that would be a mis-diagnosis and has no place in there since I've never been tested positive for that disease. I found out at my January hearing last year that it was in there somewhere, when the judge stated COUNTER to my advising him that I've been fighting with my DR to make sure I didn't have a wrong diagnosis in my record, "I see here, your diabetes is controlled by medication." Really.......just wtf REALLY!!!?
Ok, if I had diabetes, I would gladly consent to having it stated in my record that I DO have it, but having it stated that I have something I've tested negative for for the past 20 years, watched my diet etc so that I would REMAIN in the 1% that didn't have it with PCOD, which by the way is a HUGE feat on my part, is a MASSIVE frustration for me. I got an instant migraine and my hands have been shaking uncontrollably ever since I got that letter because when I talked to the primary care nurse on the 11th, asking for a change of a doctor, and please can I have someone with good listening skills, she stated to me that she saw nothing in my record to indicate that there was a wrongful diagnosis stating diabetes in there......really? then WHY THE FUCK am I getting a letter telling me to make an appointment for DIABETIC RETIN IMAGING!!!?
They are going to KILL ME!!! They are going to continue NOT LISTENING TO ME AND KILL ME BY TREATING ME FOR THINGS I DON'T HAVE!!! And they wonder why every time I leave my home my BP jumps to stroke level. I'm only safe HERE where people aren't going to try to force wrong diagnoses or medications down my throat!!!
I've had a few triumphs with the VA, after fighting with them they changed my benefits diagnosis from depression to unspecified anxiety, which is a small victory, and one which my psychologist and I laughed over since she agrees that it's PTSD, and should clearly be that everywhere, not just her office, and so I continue to fight to get the right diagnosis on my benefits area, and eventually it will be there correctly, but it's FRUSTRATING. Why......why are you SO afraid to put the RIGHT diagnosis there? It wasn't YOU that violated me causing that to be so, though you ARE very much violating me right now, by continuing to place wrong diagnoses on formal records.
Some days you just want to shake some sense into the world.