Tuesday, October 4, 2016

I am NOT done fighting Dysautonomia

I am so tired and it's still morning... I am sick of having Dysautonomia. I am sick of having tubes. (That Dysautonomia gave me) I am sick of fighting with doctors and their staff.  I always end up having to fight and worry over the littlest things. They typically get turned into big things for reasons I truly can't understand. All I can assume is they don't understand... So they over complicate the simple, and get confused along the way. Fighting for care typically gets easier after a diagnosis. That is not the case for Dysautonomia patients. Because A. We (our condition) is not known about by doctors... We pay the price. We aren't know of... That makes our doctors typically afraid, confused, or they don't believe us. They also simply do not know what to do. Our "treatments" or I should say our best attempts of treatments... A.K.A a shot in the dark...We do have available are weird, to say the least. They make doctors look at us like we have lost our minds. (Sadly that's the first judgement and they typically stick to it.) I am so tired of fighting for care! Even something as simple as a little virus for me turns into mad chaos. (Physically  Viruses can tend to make Dysautonomia worsen temporarily or even permanently.) when I walk into a hospital with an infection or virus, I don't get the typical treatments like the others around me. Despite the regular illness making my Dysautonomia fly off the handle...(very high heart rates, low blood pressure, purple feet, (my blood pools into my limbs and doesn't go to my brain, pre syncope), low blood volume, throwing up (despite my feeding tubes because I now have Gastroparesis due to my Dysautonomia), dehydration, low potassium (despite my regular Iv fluids), migraines, crazy dilated eyes, spinal pain so severe, brain fog, and so much more... I get shoved out the door. (no matter what shape I am in... Flared up  POTS/Dysautonomia, and virus or bacterial filled.) Even in a typical POTS flare I am shoved out the doors... All they see is a big case or they see nothing but a crazy-stressed person. Because they themselves simply don't have all the puzzle pieces to understand it. (I do my best to explain but there is not enough time to explain in the detail needed.)  Dysautonomia must not be true. (They have never heard of it before we tell them.)  And only crazy people would go to those extreme (just weird) treatment options. (Like taking 10grams or more of sodium daily.) Those treatments don't make logical sense, without a good knowledge of what we know of Dysautonomia. (No, those weird  options you could call "treatments" are the only options we have. I mean I could not have dreamed up POTS on my best day... Let alone it's treatments! I mean no one with POTS could ever have imagined it. It's so complex the brain would have never imaginarily have thought of these symptoms. You would need a good medical degree that is for sure! The patients take a lot of time to learn how Dysautonomia intertwines physically in their own bodies!!) Today I am dealing with a stupid complication on yet another magical journey of something so simple being messed up by a medical professional due to my "must have it different situations"... I am just tired of fighting. All I feel like I do is fight for the regular things in terms of medical care. Things everyone else gets but I just can't because I have Dysautonomia. For some reason that makes what an average Joe would get turn impossible for me... You know I am complicated. I agree. But because it's not normal or simple... I typically always get brushed off to fight on my own. I do a lot of my medical care and I do it on my own. Unforunelty now, I have been pushed far too many times to do the task of my own medical care...and will be in the future pushed to become my own doctor again. No, I can't just change doctors. That's not an option. It is not that simple to even find a doctor who is knowledgeable on this condition. Dysautonomia is a lonely fight in the medical world for many. Dysautonomia matters! It matters a lot if your doctor knows. It matters a lot if the ER doctors, hospital doctors, and specialists know. (It effects about everything in the body we need lots of specialists with understanding.) It shouldn't take an average of 6 years (for me 7 1/2) to be diagnosed...(all while getting worse by the day.) Should I add a simple thirty-ish minutes tilt table test is how we diagnose POTS?! It's not even hard! (You put a patient on a tilt table, strap them down, put a blood pressure cuff on their arm, heart monitor, tilt them, and log the heart rate and blood pressures...) an average of 6 years for that? We shouldn't be deemed crazy before diagnosis. (As most are misdiagnosed with a form of an anxiety disorder and seek treatments before getting properly diagnosed with Dysautonomia.) We shouldn't continue on that rath for the rest of our lives! I shouldn't have to argue my case in front of the "grand court" of medical doctors in Emergency Departments, in my hospital bed, or in a doctor's office...on my worst sick days to deem if I get care or not! (Then if I do it's typically not the right care, they do not know, they won't call someone who does... My Dysautonomia specialist, they won't listen to me... They won't listen to my family with me... Even when they come to ask me what they should be doing...)  I shouldn't spend hours on the phone to get the simplest of things taken care of. I shouldn't have to push so hard for any medical attention! It is not my fault I know more about my Dysautonomia than majority of medical professionals! Can't you see? I just want help? That I have to. I have to know to survive. Because if you don't know what to do... Shouldn't someone? #Educate this is the life of #LivingWithDysautonomia it is a daily #battle for necessary #medicalcare. I don't want to have to be a my own doctor anymore. Dysautonomia severely impacts the quality of life in it's patients. 70million world wide have Dysautonomia why is it being ignored? -Chelle 
Want to help? Go to this link: http://www.dysautonomiainternational.org/page.php?ID=95 print out a packet at the bottom and take to your doctors. (Even your local Emergency Department doctors, and hospitals... Nurses and/or EMTS!) They can learn and get resources for education on Dysautonomia. They can help recognize the symptoms in a suffering patient with no answers. They can help a agonizing patient find a diagnosis. They can be aware. They can better treat. They can learn. They can join the fight and turn 6 years into 30minutes. They can tell their doctor friends. They can reduce sufferings. You giving them this information ... Can be the first step to changing many lives.  (I do fight for medical care at a rediculous rate. I do believe it is from lack of education. Dysautonomia patients are constantly going through this. This post is suppose to show the impacts of the lack of knowledge of Dysautonomia and how it effects Dysautonomia patients... But I would like to add I have a group of lovely, talented doctors! One who treats Dysautonomia (very well) and some who have learned of Dysautonomia just for me. I am thankful for my good doctors. But even with their good care, I constantly am finding myself in the battlefield against doctors when I need care.)