MemyselfandI's blog: "The low down!"

BEING TOLD I AM THE BEST MAMI IN FUBARLAND... I knew it but it never hearts to hear it. Thank you Papi!

as I know they may be based in love but right now I'm so full of rage, pain and fed up with being told what I'm not being enough, doing enough, fighting hard enoough and that I'm a fake victom... I fight every day with every breath, thought,heartbeat, blink and sheer control not to sit and scream all day. I know my friends and acquaintances can only read my typed words, but those who "care care" take the time to ask me for the whole picture. Right now on weekends, if you want to know it all, call me, I can talk for hours, but not so during the week as I now have to fight my insurance company on the one of over 9 ER trips in the last month. So please, if, even in love, your going to chide me, or take offense, or anything else not made of sugar; then call me next weekend and I'll do my best to try and give you the whole picture of this massive painting that is my every moment. No submisive victim here... Nothing but warrior at heart, so thank you. So here was my day after I followed the ardent but loving advise to not wait till Monday to see im my wrist was broken because I already owe like 4000$ in ER and hospital bills. I took thier enthusiastic but loving shove to get it checked. So I went to urgency care, hoping to save nobey, and the doctor there ordered me in word and writing immediatly to the er... for the wrist that wasn't broken he discovered but assumed as a wrist doesn't hang limp with very little hand movementality, if thats a word, so even though I was willing to wait till Monday as it costs a lot less to go to the doctor than the ER, he refused and said he would contact my insurance as my not doing as ordered. So, Kevin and I swore to make it by sunday... We ended up doing as he told us and went to the ER at 3:15pm, got into a room by 4:30. Then did not see the doctor till 9:15. And until then I wasn't allowed a sip of water or anything for pain "till I was seen by the doctor." When he finally came he, as I knew would happen, blew through my history and hell even why I was there let alone, the fact I was writhing in paiin from my spine, head, hips, full left arm being nothing but pins and needles and a bed of poison tiped darts of anger and frustration as he strode through my 7 hours of hospital hell saying he was going to give me toradol for the pain, of which I explained how on several occassions, it never helped AT ALL! He simply said, "Well, we'll get that toradol ordered for you so your pain will be taken care of." He said I would feel perfectly well within 20 minutes... an hour plus later, I can tell ya FUCK NO! So when he waltzed back in with a (I've saved the world and I'm only 25) smile, adjusted his doctor glasses and then played with his thesascope like a woman would a boa, and cockily said, "Pains all gone now isn't it." I looked at him in the eye with the best smile, without bitch slapping the fuckers face, but instead, "I apologize ahead of time, but it hasn't touched any of the pain I came in with, increased to or now feel after you were testing me for numbness that I already... so no. But I'm trying to be nice, so what do you see from my films?" A little swelling around my left outer wrist bone but as I told your doctors co worker that you need to been seen for the spine, kneck and head..... yada yada yada, passing me on once again. Done I am, Fucking done... no ones gonna push me into things I don't want, need, can or cannot do. No, I'm not being a fucking victim, cuz anyone who knows me well and takes the time to check in and see if im alive at least every couple days, will tell you, I am fighting, kicking, swinging and riping my way through every doctors orders that i follow hoping matbe this one will fix this or at least maybe care enough to go farther and not pass me on to someone else that i have to spend a month educating thhem on this rare but fucking painfully debilitating stupid head disease. Its someone elses turn, I want off this fucked ride...

I've been in the hospital 4 times in the last 2 weeks and one time was for brain surgery that didn't answer any of the questions we were hoping to answer. I'm starting to feel very defeated and kind of doomed that this is going to be a life long kind of thing and fated to end up blind as well. If you knew half the crap thats gone on in the last month, you would absolutely cry but my heart keeps beating and I smile at least once a day to make sure that my face remembers how. Then after it all, my doctor doesn't know what to do after 2 years of doing everything and anything, nothings improved. Kind of sucks when your doctor throws his hands up in utter defeat and says he feels he will be wasting your time to continue being your doctor cuz he hasn't a clue what to do to help and hopes maybe another doctor with a fresh perspective could help if at the least, be able to hook me up with a specialist who can actually help for sure. UGH... didn't mean to write a book but this is my life and I'm living each day as if it was my last and holding my head up high hoping I won't pass out and keeping it real without thought! Love ya, Kara

Tomorrow morning at 9am, in 12.5 hours, yours trully will be entering the main hospital in Portland Oregon, OHSU, to have surgery. I've kind of kept it quiet because I can almost guarantee after almost 2 years of no success in any way of stoping the 247 hella pain that leaves me either passed out 3 times a week or BLACKED OUT for as little as 15 minutes up to 3 hours at least 3 times every 2 weeks.

Oh and hey... nothing to be happy or proud of but its a mile marker none the less, as I did end the month with over 50 times of passing out with the most recent being in the hallway of the Emergency room with way too many people trying to pick me up without asking, and putting me in a wheel chair like a true handicap girl, I think I deserve a present of some sort and no, not a helmet as some have so sarcasticly suggested or a wheel chair as one person thought of that will get them bitch slapped if they reccomend it again... but something fun and pretty. Something unique but shows I'm heard, seen and understood... despite my dreadful run on sentances due to great big Shots of morphine in a long sip of IV saline! I think Not Breaking my skull 50 times deserves a good present! Knowledge is power so something pretty would be nice or a gift certificate to my favorite online, which is... http://www.pyramidcollection.com/ , that and or dinner at Olive Garden with some good friends or some kinky as hell fun toys to try out on a friend or two... aka gift certificate to Castle in Portland!!!!! Knowledge is power people, so now you know! Tee hee! Licks and kisses, Kara ps... Morphine starting to wear off... and to bed I go!

Anyone whos lovingly connected with me or spoken with me in asking trully how things are with me in the last two weeks... no last 9 (now 10 days), know that life and this damn disease has sucked big time, to put it as nicely as possible. Don't get me wrong, the people in my life have been thier wonderful, thank God for them, loving people they have always been and probably always willl be but my health and this damn pseudoturmor cerebrai disease and its fucking complications have had me in and out of the hospital so many times that it may take me a lifetime or two to pay off all the hospital and test fees that were "neccessary to help efficantly and effectivly draw to a understanding and draw a conclusion. This all for why I've, in the last 9 (now 10) days passed out over 26 times, with the last one in the hallway of Southwest Medical Hospital here in Vancouver in the ER's hallway face first sending three nurses running for help and being woken up by my right arm being almost pulled out of my socket as they tried to wake and lift me at the same time. Kind of funny how saying "Fuck no!" in a semi loud voice can make people drop you softly back onto the hard floor you already face planted onto in the first place. This is also for why in the last 9 (now 10) days I have blacked out, which is a newbie thrown into this fun ride in January, three times with the shortest amount of time being 15 minutes and the longest time being 2 hours and 35 minutes according to my ex. I wouldn't be to shocked with the blacking out if it wasn't for the complete and utter loss of memory of anything that happened a good 15 minutes before it happens and my utter misunderstanding, aka brain sludge, for a good 15 minutes after it happens. According to people who have been with me or interacting with me at the time of these black outs, I suddenly begin to act and sound without any warning like I'm drunk and unable to carry on any kind of conversation while continuously repeating myself or asking the same questions without resolution. Now, I will be the first one to say, I've never been the brightest yellow in that section of the 96 crayon box set, but I can keep things moving and groving even with the stupidest of humans. So for me, having more minor short term memory loss thats been becoming more and more common since my VPShunt brain surgery back in August of last year, combined with sudden and randomn black outs for up to almost 3 hours time, and passing out at the drop of a hat... has got me and my doctors scared and overly concerned. What to do? Sometime in the next two weeks I am once again undergoing brain surgery to see if the vessels leaving from my brain may have had a narrowing of a major blood vessel in my brain that carries the neccessary fluids and regulates the pressure in my head and spine... aka, somethings clogged and not working right possibly. If so, then it can most likely be fixed and I can hopefully go back to the normal crappy pain I've had since April 13th, 2006 and or back to life as I knew it before all that. ((Wishing for red ruby slippers)) Either way there is hope... wish I had theheart to give hope a chance but for now... I'm going to cling to that little peice of hope and believe for a miracle again. So, now I'm going to go strip down as naked as a chocolate girl can be, climb under my 'lectric bankey and try to go night night while this lovely morphine shot from the ER is still in my system! Sometimes they can be a good place to go when your willing to cut off the back of your head just for some release from torture pain... thats a whole nother ball of wax children so don't freak out... Goodnight, Goodmorning and may you all be blessed with the health I pray for. Much love and thanks for your love, Kara ps... Don't forget to remind me, cuz I will forget, to tell you how theres a good chance I may have cancer in both my eyes sometime, K? Night

WELL, as ,many of you know, in April 13, 2006, I started to have a headache that was so physically dibilitating that I was passing out at work and in my bosses office, which she did not like and sent me home on short term disability till it was under control after a week of this. I pushed it out to as far as I could and ended the month at the top of my game having won an awark in the wake of the storm that would soon become my life. I figured it would stop within a week as our family has had a history of migraines for all the women in biologically born into our family do once they've become a woman and are plagued onec a month with a migraine headache from hell as our blessing to bare fruit and continue the legacy that my white grand parents left me... AKA nothing but eggs on my part. So, that headache that never stopped and kept getting stronger in intensity and debilitating pain pushed my then basic nuerologist to do a spinal tap to see if somehow I had an infection in my brain and spinal fluid of if anything else was going on since there was no high pressure of brain of spianal fluid which usualy shows in your eyes as it can press upon your optic nerves and eventually lead to blindness... we later found out. For a just lets rule out a few things, she set me up for a spinal tap to check the pressure in my spine and brain for fluid abnormal or not. So I had a spinal tap at South West mecial center here in Vancouver washington and found out that not only did I have a little higher than normal spinal fluid in my nereval center of the body but I had twice the normal pressure which should be 15... mine was 33. So right then and there, they took out the extra spinal fluid before it blew out my spine and did the normal testes on the fluid and ofund it was good just way too much for no good reason. After spending a couple days at home resting and getting over a spine shoved deep into the middle of my spine, I realized that the pain was not going away and each day, it was getting worse and worse to the point that I was sitting in a chair in the living room at my EXS house and was shaking so hard the chair was squeaking like an elephant confronted by a mouse with razor fangs and was basicly shaking so hard I couldn't speak but for screams and gasps of pain. Kevins family was not ok with this so they called the doctor and just from hearing me scream in the back ground had me taken in immediatly to the ER and found that in 3-4 short days my pressure had climbed back up to28 when it should have been the 15 they had extracted fluid for to fix it days before. So after another 2 days my pressure once again was climbing again and I was diagnosed with a disease that is totaly non communicable called Intercranial Hypertensions (pseudo tumor cerebrai) which I have type 1 where there is no reason for it that they can find but it kicks your ass and normal pain pills tend to not touch it in any way let alone that most people with this disease find it totaly dibilitating. Its been my bane since then and as any of you who trully know me in anyway shape or form know, I fight this disease for my independance as much as possible. Its taking my sight slowly step by step with a retinal disease that I just found out yesterday, leads to eye cancer that very easily spreads quickly to the rest of the body and is reccomended that with anyone with this diesease needs to be checked immediatly for cancer in thier entire body as it spreads fast like my dads cancer does. In some ways this would be an answer to prayers as it would be a reason beyond what they've found that is the reason for all this bull shit but at the same time, cancer is what killed my father... soooo... At this time, I don't have eye cancer but from what they are already seeing, I have the changing cells that do lead to cancer of my eyes and slowly just destroy my retinas as they are already being seriously fucked with. So now its just waiting to get refered to another specialist to find out if this can be stopped or if I have to have cancer fighting grains inserted into my eyes and do chemo on it before it spreads beyong my eyes like my dads did that took him in 3 months... I'm praying for Gods will in it come what may. Back to the rest, well the specialist found through the MRI that I do in fact have a severe narrowing of the tubes that are suppposed to be leaking out brain fluid to the parts of my body that need it and that may be why I've passed out 26 times in the last week alone, not counting the 3 hours of black out that I've lost memory with. And seeeing how anything that I do besides resting tends to find me and whatever I'm carrying on the floor praying I don't break my spine as the doctor is so afraid I'm going to do ... But I do what I can and hold my strength for the times when I need it and when I do go out to do anything at all, I surround myself with people who understand my disease and know not to freak the hell out if I pass out or black out and just watch over me till I come back to life as usual. Hard on them but either that or I can sit at home and do the same thing... so I leave that choice with them as to what they are willing to handle or not. So for the next 3 days I'm doing jack to prepare for a dear friends hopefully celebratory success in getting into a masters degree course after a basic test that brings alot of tricky questions with it and being part of her celebrating would be kick ass cool as I love spending time with her! So keep me in your prayers that this surgery that will take place in the next week or so shows a huge difference that I feel daily in my head, will be so obvious in this surgery that they can but a stint into it and hopefully fix it so I'm not passing out and hopefully help withthe pain the mean time. Cuz almost 2 years on 247 worst mirgraine I've ever had X 5 is tiring and I'm ready to get off this ride... And thats where I am. If you don't see me much online, thats why... blacking out on a computer chair and falling to the floor and only finding out about it is a goose egg on my head from hitting my desk and bruises all over my legs from getting them trapped in the mahogany desk is not fun anymore. Brusises on chocolate people for some reason always look worse than just the vanilla crowd let alone the fact that it makes us like damn dirty and I'm not up for that as I already have to have someone there to help me shower lest I pass out in the shower crack my head on teh shower or crack the tub bottom... Sorry but I want my deposit back! ROFLMAO... not really but at least I'm smiling a little. Now how do I tell me family in Indiana without them panicing... I'm thinking I should wait till its done and find out if it can be fixed and go from there or just leave them in the same holding pattern and not get thier hopes up as I'm trying not to get mine up as well. Hurts to much to have your hopes dashed daily. Just keeping the ones I love informed! Love ya and see ya soon!