**as you will see,this post was disrupted during a computer update,crossing my fingers this was the only one! i salvaged what i could because of what i believe to the irony of the next post after this and after my neurology appointment (though the new information,if it leads to what we are now hoping, could still be affected by government cut backs).**
i know i haven't been online socially for a bit now. i did post a tweet that i would be resting. what i didn't say was, maybe because i didn't realize it at the time, that my brain needed a rest from things like the government taking away or threatening to take away things like rare diseases research, medicare,disability and more, from those of us who need it most. along with the thought of so many people seeing this as the right thing to do.
just when we have started learning so much through stem cell research and genetic testing, i fear, during my up coming appointment with my stroke intervention/moyamoya neurology specialist, i may be told i will not be allowed to come back *not to mention the fact i signed legal papers to donate my body for research of moyamoya and other vascular diseases and what happens if i die before they get their heads out of their a$$e$* because of government cut backs, ...no matter if it is through sequester cuts to teaching hospitals and payment to DRs accepting medicare or obama care cuts to medicare coverage... either one could mean losing the most important doctor in charge of my care for a rare disease, which is actually one cause of one of the leading causes of death or disability in this country and many countries around the world, STROKE, and one that is responsible for many of the strokes endured by infants,children and young adults. i do not understand why the cause of a persons strokes is less important than the strokes themselves. i do not understand why a persons age is considered a factor in whether or not they receive benefits for treatment of something progressively debilitating and disabling, not to mention deadly, for which there is no cure.
i do not understand how the deprivation of medical research and treatment of any disease, rare or otherwise, by ones own government, or any government program, state or federal, is not seen as unconstitutional or at the very least medical discrimination.
i do not understand why i am repeatedly asked,*during home visits, for review of my disability program qualifications or as part of my care team (of which i am supposedly a part of) by people who have little or no knowledge of moyamoya disease*, things like 'why is it so dark in here' to which i reply 'because bright light and shadows make me dizzy and disrupt my brain recognition and vision', or 'why is it so cold in here' to which i reply 'because i get over heated easily,causing me to feel faint and fatigued', or 'how are you sleeping' to which i reply 'i've been sleeping a lot cuz i'm not feeling well,or,i've been in a pattern of sleeping 4 hours awake for 4 hours,sleep 4 awake 4... or,i've been having insomnia or lost time eoisodes... all of which i believe to be part of moyamoya, the part they call altered states of consciousness or 'how often are you eating','how has your mood been'. ...'i think you should take a blood pressure pill','you haven't had any emergency room visits in quite some time now' << these last 2 get the same response 'because i live here with as much independence as possible i'm able to follow DR, Zaidats instructions on how to take my blood pressure and my blood pressure medication, and because of that i do not need to go to the emergency room every time my blood pressure goes to high, nor does it go to low as often,which is just as dangerous to me as that can cause a low flow stroke', to which one nurse repeatedly tells me 'this is not the way this blood pressure medication is normally prescribed', to which i repeatedly reply, 'i'm not a normal blood pressure patient, i am a moyamoya patient with high blood pressure which means i have different blood pressure parameters of 130 to 150 systolic',*even after he told her himself ,a year ago in his office, that i'm doing it right, i still had to explain it to her again this past friday*.'have you had any falls','do you own your hospital bed,because you don't fit our criteria for needing one' (WTF?),or a pharmacist asking me over the phone 'why are you taking so many prescriptions for cholesterol when your cholesterol is better than mine and i'm younger and physically fit' to which i replied 'do you have moyamoya disease or a history of stroke?' i believe he replied humbly 'uuhh,no.' then filled my order and shipped it to me.
LMAO,WOW!!...i guess THIS.... >>> ... *data-blogger-escaped-..="" data-blogger-escaped adventure="" data-blogger-escaped-all="" data-blogger-escaped-am="" data-blogger-escaped-and="" data-blogger-escaped-anyone="" data-blogger-escaped-anything="" data-blogger-escaped-are="" data-blogger-escaped-as="" data-blogger-escaped-be="" data-blogger-escaped-but=""*... <<< ... is what happens when you upgrade back to windows7 from vista and data gets transferred BEFORE 238 problems can't be fixed till after upgrade!
... i decided not to delete it all because it reminds me of the movie 'THE SHINING'!!!! CLASSIC!!!!! LMAO!!!
**no clue what is missing here**
'what are your goals' ok,this is a touchy one for me... i mean seriously, what are my goals? here THEY are viewing ME as a normal stroke survivor they are expecting to talk about having recovery goals they hope to meet. not viewing ME as an individual person who has had this progressive brain disease for at least 20 years and is unable to have brain bypass surgery because i was misdiagnosed for 14 years! taking a dozen or more prescriptions, most of them more than once a day to live, and there THEY sit insisting I need to set a goal. 'it's mandatory for everyone on the program to set goals every 6 months' they tell me... so for the last 2 years my goals have been raising awareness of moyamoya disease, to, raising awareness of moyamoya disease to a larger audience through twitter,to, continuing to raise awareness of moyamoya disease through twitter and to reach an even larger audience through face book and now my blog,to, continuing to raise awareness of moyamoya disease and the other 7,000 rare diseases through twitter,face book,my blog and volunteering for clinical testing of moyamoya disease,plus legally donating my body then for further research of moyamoya and other vascular diseases'...
due to government cuts... have all my efforts been in vain...