Some background for those trying to follow along on my journeys.
I have a very rare bleeding disorder. Its very complicated, and involves platelets, mast cells, and probably uric acid crystals causing widespread inflammation, including intracranial. My doctor isn’t really sure how I’m alive, and encourages me to embrace the self identity of a superhero cartoon character instead of a victimized trauma patient.
In 2016, it was activated by exposure to mold and I had two major seizures in the back of a police cruiser because I had called them due to work complications and well, they weren’t really equipped to bring me in. And in retrospect it wasn’t entirely the officers’ fault; how often do you encounter someone with an atypical seizure disorder due to a seizure disorder in full panic mode when they constantly train in self defence and dance?
So, during the lead up to the American election, shortly after I added several politicians and military personnel to my various social media platforms and right before NATO held Project Syrenko, which was a contest to go to Belgium and ask pesky questions directly to the NATO chiefs, yours truly ended up on her first forced period of R&R at Alberta Hospital Edmonton, and was misdiagnosed as a paranoid delusional schizophrenic by a man whose ego is bigger than I am tall and reminds me of a torture porn freak who sought to deflect and diminish me by manipulation of the terms of reality by denying that stories I was passing along on my blog weren’t real.
So here I am. I was just released again from Alberta Hospital; this time for investigation of gross subdural bleeding and epilepsy, because again, I have subclinical kidney failure due to metabolic acidosis from this stupid bleeding disorder; in January I was suffering from a bout of internal bleeding most likely caused by lecithin, of all things, in the most unlikely of places you would expect to find a “toxin” causing internal bleeding; Glucerna. I will be okay, but need to reassess my priorities a lot here and give myself a lot of time to recover, but here’s the problem.
I can’t get care for the internal bleeding because I have been diagnosed wrongly as a schizophrenic, and because of the nature of my work and the relationships I have – many of them rather notary, and often working relationships, I am dismissed as delusional or that I am experiencing somatic symptoms due to mental illness. I am not. I have been told very directly by a bleeding disorders specialist that I have some sort of bizarre genetic curse and the GP who has known me since childhood says that I need to try and understand that to the medical community, I *appear* to have psychiatric problems but am actually a mythology and that they simply don’t cover this in school.
The doctor who told me that it is a bleeding disorder, or a blood-borne illness rather, is an immunologist and hematologist at a comprehensive clinic here in Edmonton and I have seen him twice I think. They are chronically underfunded because of the degree of stigma and superstition regarding blood diseases, and my experience in reality is really quite horrifying because well; I am mythological.
The disorder causes hemolyzation of blood in response to certain foods it seems, as I get very sick after eating certain things and I believe that the overlying cause falls under the category of atypical hemolytic uremic syndrome causing low platelets or macrothrombocytopenia.
It is very very painful and when it flares, I feel I need saline, possibly morphine and antihistamines, and maybe corticosteroids in order to prevent the chemical reaction causing the seizures from leading to potentially fatal encephalitis, and to try and avoid triggers. Triggers however are really hard to identify and depending on the level of inflammation and stress I am experiencing, my tolerance really varies.
So, because I was in more pain than I could handle and realized I had been acting like my father when he had high sugars and blood pressure and my head was literally killing me, I tried to get medical care.
The good news is I am alive and will probably recover but need to reduce stress and focus on executive function type stuff and try and rest and get out more as tolerated; the bad news is that I am still in extreme pain because they denied me morphine and it took me I think three days of going to the emergency and finally giving up and calling 911 for suicidality and hopelessness caused by a massive migraine and atypical seizure disorder. I almost didn’t get treated either; I had to call ahead to security and let them know I was coming in and wouldn’t leave without a saline drip and maybe morphine and that I would be cooperative. I almost died because there is a chronic shortage of vital life-saving fluids and the increase in mental health problems and poor supply chain management combined with hurricanes has people like me in extremely dire straights.
My head hurts a lot, but you know; I re-read my journals and I remember everything, and it feels a lot like the headaches and kidney injury are being caused by the system ignoring my existence and denying the reality that I have created for myself out of extreme trauma and self interpretation. Sure, I have acted “crazy”, as in akrasia; against one’s best interests, and my pain during these seizures could actually be rationalized as a junkie having a psychotic break; the problem is that to me they feel like a werewolf transformation, and they are brought on by extreme stress and intracranial swelling and what feels like my cells exploding and turning into glass and attacking me everywhere.
So it feels like the stress from having the endlessly repeat myself in order for me to establish the truth behind the narrative of the experience of my perception of my own witness is what is causing the hemorrhaging, and having male psychiatrists who take an innate power position and deem me hostile rather than imperious and brazen is what is causing all this harm; they are literally trying to tell me that I’m delusional that I went on trips and have so and so following me on Twitter etc and they won’t even look at my blog!
I am angry, and I have a right to be angry, and I don’t understand why a psychiatrist won’t even admit that fact. However, for the most part this visit went very well and they contacted the people on my personal directive and let me authorize the treatments as they gave them to me. It bothers me that I basically had to figure out a way to take the system hostage without any casualties through charm and wit and reasonableness in order to get a saline drip, and I have to say that throughout the experience I was wondering what it might be like if I were a black man in Chicago and it was my baby girl and I had a gun. Interesting question, one to which I will never truly know the answer.
My GP told me that in order to get care I have to be absolutely charming and very careful with what I say and that I am basically screwed here.
If you are still following along, I should tell you that I love to receive fan mail and if you want to help me out so I can keep writing, either send me seeds or donate to Dr. Akabutu’s Comprehensive Clinic for Rare Bleeding Disorders at the K Clinic Edmonton. in my name, Rene Millward.