someone asked me yesterday 'are you sick or is it a joke?' maybe it's my own fault that someone would feel the need to ask me such a question. maybe i have not explained enough. maybe i have not complained enough. maybe i've become too good at hiding it. maybe i should say more about what i live with everyday,because maybe they think i'm looking for personal attention. maybe they think if all i have said about my disease were true that i should be in a nursing home unable to function think or speak. truth is by all accounts...i should be.
i need to live in a controlled environment as i have sensitivities to temperature,light and sound, which are due to brain damage caused by numerous ischemic strokes which have deprived approximately half of my brain of blood and oxygen in progression with each of these strokes over the last 19 years at which time i had my 1 and only hemorrhagic stroke aka brain bleed. i was working out with weights at a gym at the time. after about a year of numerous tests i was told i had lyme disease and the brain bleed was most likely a one time vascular event. i was told i could not donate blood or organs after having lyme disease and that it would be best not to have another child as i may not carry to term or if i did i and the baby would be at high risk of death during delivery. i was also diagnosed with hypertention which had started a few months before the brain bleed,also that i now had fibromyalgia and could end up in a wheel chair within 10 years (i am at 18 yrs. and still walking with the use of a rolator walker for 2 years now).
i am an asthmatic with many allergies,have been since early childhood, migraines since i was 19,i have chronic lyme disease,arthritis throughout my body,degenerative disc/joint disease including 3 sections of my spine-1 being my neck,i have gerd, ibs, PTSD, vertigo,high cholesterol, low potassium and vitamin d,essential tremors and uncontrolled muscle movements (which sometimes resemble cerebral palsy),i have sleep disturbances and altered states of consciousness from MOYAMOYA DISEASE which i was finally properly diagnosed with in december of 2008 and has been the cause of the blockages in my blood vessels and arteries in my brain,plus the small defective new blood vessels which grow after a blockage in an attempt to supply the brain with blood and oxygen,however with MOYAMOYA DISEASE they grow skinny and tangled leaving with looks like a puff of smoke on a brain angiogram. also,with most of these illnesses and symptoms comes pain.
almost every single moment there is pain somewhere in your body... you can adjust to pain after living with it for a while, but as the illnesses add up so does the pain,you readjust your pain level again,and again,and again. you can get to the point where it's normal to have a pain level of 5 and not consciously be aware of it it;s like playing cards you can have three 5's and adjust,meaning 3 areas throughout your body with a pain level of 5 all at the same time,but then you make the simplest move or stay still for too long and suddenly pain levels start spiking. it can be as simple as one spot goes up to an 8 or each of the 3 spots go up to an 8 OR you may suddenly go from pain in the tops of your feet at a five jump to a level 8 and extend from your toes to your hips with it feeling as though someone is stretching and pulling all your veins,tendons and arteries out of your legs thru the tips of your toes. pain,tremors,uncontrolled muscle movements,vision problems.lost time episodes and more all being controlled by a brain that no longer has normal active transmission of signals to you body or even your mouth for normal speech or thought. have you ever been in the middle of a sentence and not only forget what you were saying but suddenly feel like your brain has in an instant gone from turning clockwise to suddenly turning counter clockwise,it's as if your brain is suddenly weightless and adrift or have you ever been driving and hit black ice and totally lost control of your car and its all in fast motion then suddenly the car stops and it all turns to slow motion. that is what it's like,but it is the sensation of your brain moving out of control and an instance of not knowing which end is up.then your brain suddenly has no sense of direction or coherency,your brain and your body become totally unsynchronized and confused or leaving you lethargic and sometimes in a slumped stare. which i can sense i am headed for right now,so i need to stop for today. #MOYAMOYADISEASE