I really dont feel like writting today. Normaly when i write its in a freeflowing state, the thoughts just flow onto the page via the keys without pushing. Today is not a day like that. This equates to this piece of my blog feeling a little contrived. I think its because i had to be exsposed to a ptsd trigger yesterday and my natural way of coping is to shut down and log off cerebraly.
SO,
this xolair is about 270 english pounds per injection. Its an anti IGe drug. IGe is a biological signaling molecule which is part of the allergic cascade which finishes with the production of histamine. Im sure you will all have seen or take anti-histamines when your body has been exsposed to an allegen (particle wich your allegic to). Being back in england allows me the priverlage of being under the wing of the NHS which means i dont have to pay to have the opportunity to trial it. Before i go on i will say that the NHS is not some glowing saintly thing, i am on lots of waiting lists for help, the doctors have little time to deal with my holistic care but its always free at the point of delivery and for this im very grateful. In New Zealand i had to pay to see the doc, pay for my meds but not emmergency hospital care.
Post Traumatic Stress Disorder induced by the trauma of emmergency medical care (this care not being one off but many many times). Emmergency life saving treatment for asthma so severe it ends in respiratory arrest and the need of resucitation and adrenaline and/or the placement of myself onto mechanical ventilation although for the right reasons is a brutal thing. To be in a state of hypoxia (low blood oxygen level) is an amazing feeling and the closer you get to death the more comfortable death is. I am not frightend of death quite the opposite although im not ready for it right this second, its the journey to that destination which worries me.
The ptsd means that in any medical environment, even talking on the phone to anyone medical iduces rapid onset of accute symptoms which are underplayed by everyone but my dad. Hes been at myside supporting me through the last 12 months and he see's how i am normaly and the rapid change of sophie within the environment. I know its not them.....i just know its me...the person i become is an antethesis of who i actualy am. I become hypervidulant/hyperaroused...dry mouth, tingling in my lips and fingers, heart in my mouth, butterflies in my tummy, feeling i could be sick and paranoier and my personality so out there it induced scorn and judgment. To such a degree i deal with the perrils of my health when bad at home for fear of becomming that animal of primal actions....the fight or flight woman i am as cortisol and adrenaline mix in my system to make this pussycat into a rabid lion.
Anyway all this and my visit yesterday make me think of canceling this xolair, this life changing medication, my lat chance at physical freedom. For nothing more than not having to go to hospital every month for the rest of my life. I have medication now to help, the amiltryptaline, the valium....but even this mix of exotic chemicals isnt helping me much. The docs and nurses already poluted by my unmedicated personality.....i feel so misjudged....so judged.... the more i fight for the right treatment the more i piss those who care for me off. This ptsd is an unseen inury....i have no plaster, no bruising.....and those who help me have no wanting to understand. I cant not continue this xolair trial....i just cant...so i have to be put in an arena where i am discrimminated and raw.
On my return home yesterday post hospital i took an adissional 5mg of diazepan which allowed me to move through the feelings of being bad, dark and combative....and so exhausting was the emotional journey of yesterday that i slept for 12 hours which for a ptsd sufferer is a miracle....so that why going for treatment or help is so complext for me. Its box rational and irrational....so i wait for my next psychiatrist appointment and wait patiently on waiting lists and i keep taking the medication.....
I am a medical paradox.....and i care....oh how do i care and so it hurts deeply. No wonder i wish to hide away in reclusion....here im safe....not judged but my life stays stagnent....i pray for change....i pray for the waiting lists to allow me to get cognitive help.... In saving my life with emergency medicine they took my old life and i awoke with a different unwanted life.....and there attitude is i should be grateful to have survived and arnt we all good for saving you and look how you repay us....not with gratitude (although i am) but with this comabtive aggresive attitude....oh lord i wish that will power could overcome my feelings but after 27 years of this compounding each time into one massive life threatening problem i am at a loss. Its why the misdiagnosis of bipolar has caused me such damage...cos 8 years of that misdiagnosis could have been spent treating my real issue which is ICU/hospital induced ptsd and thats as simple as i can say it.
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